FASD Ireland News, Media & Blogs

FASD ADHD Comparison: What Families Need to Know

Sun, 13 Sep 2026 00:01:00 GMT

FASD ADHD Comparison: What Families Need to Know

A FASD ADHD comparison can feel personal as well as clinical. A child, young person or adult may have been described as impulsive, inattentive, hyperactive or oppositional for years, while families have been trying to understand what sits beneath those experiences. Clear information can help replace blame with understanding and guide support that fits the individual.

Foetal Alcohol Spectrum Disorder (FASD) and Attention Deficit Hyperactivity Disorder (ADHD) can look similar from the outside. They can also occur together. Yet they are not the same condition, and assuming that every challenge is ADHD can mean that a person with FASD does not receive an appropriate assessment or the practical support they need.

FASD and ADHD: why the distinction matters

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. It can affect how the brain develops and how a person manages attention, memory, planning, communication, sensory information, emotions and everyday tasks. FASD is not defined by behaviour alone. Its impact can be uneven: someone may be articulate, caring, funny and capable in one setting, then need substantial support with tasks that appear straightforward in another.

ADHD is also a neurodevelopmental condition. It is commonly associated with differences in attention, activity levels and impulse control. ADHD can be recognised in childhood or later in life, and support may include environmental adjustments, therapeutic approaches and, for some people, medication.

The distinction matters because a diagnosis should lead to understanding, not simply a label. A strategy that helps with ADHD may be useful for somebody with FASD, but it may not address challenges with memory, cause-and-effect reasoning, adaptive functioning or sensory processing. When support is based only on what is visible, the person may be expected to do more than their brain can reliably manage.

Where FASD and ADHD can overlap

Both FASD and ADHD may involve distractibility, restlessness, impulsive decisions, interrupted sleep, emotional overwhelm and challenges following instructions. A student may lose focus in class, call out, leave their seat, struggle to begin work or appear not to listen. At home, routines, transitions, chores and getting ready to leave can become sources of stress.

These shared traits are one reason FASD can be missed or mistaken for ADHD. However, the same outward behaviour can have different causes. For example, a person who does not complete a three-step instruction may be distracted, but they may also have difficulty holding information in working memory. Someone who appears defiant may be confused by language, overwhelmed by noise, unable to shift from one activity to another, or unable to predict what will happen next.

Behaviour is communication. Asking what the person is finding hard, rather than asking why they will not comply, creates space for a more accurate and compassionate response.

Key differences to consider in an FASD ADHD comparison

There is no single behaviour that proves either FASD or ADHD. The following patterns can nevertheless help families and professionals ask better questions.

With FASD, challenges may be particularly noticeable in executive functioning. This includes planning, organising, remembering instructions, managing time, learning from consequences and applying a skill learned in one setting to another. A young person may understand a rule when it is explained, yet not recall or use it when the moment arrives.

People with FASD may also experience differences in adaptive functioning. This means that their everyday independence can be less developed than others might expect from their age, language skills or apparent confidence. They may need repeated support with money, personal care, travel, appointments, safety, cooking, forms or relationships. These needs can continue into adulthood.

Sensory processing, sleep, speech and language, motor skills, social communication and emotional regulation may also be affected in FASD. Some people are highly sensitive to sound, touch, light, hunger or changes in routine. Others seek movement or sensory input. These experiences are real needs, not a choice or a sign of poor parenting.

ADHD can include executive functioning challenges too, and every individual is different. The central point is not to use a checklist to decide on a diagnosis. It is to recognise when the person’s profile is broader, more complex or less responsive to standard ADHD approaches than expected.

Can someone have both FASD and ADHD?

Yes. FASD and ADHD can co-occur. An ADHD diagnosis does not rule out FASD, and FASD does not rule out ADHD. In practice, this means it may be unhelpful to frame assessment as an either-or decision.

A person may benefit from support for attention and impulsivity while also needing accommodations for memory, sensory needs, communication differences and daily living skills. Medication can be helpful for some people with ADHD traits, but responses vary. Any discussion of medication should take place with an appropriately qualified clinician who understands the individual’s full developmental history and current needs.

The aim is not to collect labels. It is to build a clear picture of strengths, support needs and the conditions in which the person can thrive.

Seeking an appropriate assessment

If you are wondering whether FASD could explain a child’s, young person’s or adult’s experiences, bring together the information that shows the whole person. Families often hold vital knowledge that can be lost in short appointments or school reports.

Useful information may include developmental history, prenatal alcohol exposure where this is known, health records, education reports, observations from teachers and Special Needs Assistants, examples of daily living challenges, sensory needs and what helps the person regulate. It can also be valuable to record strengths: interests, trusted relationships, practical talents, humour, empathy, creativity and the environments where they feel safe.

An appropriate assessment for FASD is multidisciplinary and considers more than attention or behaviour. Access routes can vary, and families may need to persist in asking for their concerns to be heard. If prenatal alcohol exposure is unknown, that should not end the conversation about support. Many people have incomplete early histories, particularly those who have experienced care, adoption, family separation or loss.

Practical support while you seek answers

Support does not need to wait for a diagnosis. Small, respectful changes can reduce stress and build confidence at home, in education and in the community.

Use short, concrete language and give one instruction at a time. Pair spoken information with visuals, demonstrations or written prompts. Build in extra processing time, because a delayed response may mean the person is thinking, not refusing.

Predictable routines are often protective. Prepare for changes in advance, repeat plans calmly and use consistent cues for everyday tasks. Break activities into smaller steps, and offer support at the point it is needed rather than assuming a person can transfer yesterday’s success into a new situation.

In education, focus on adjustments that make learning accessible. This may include a quieter workspace, movement breaks, reduced written load, visual timetables, repetition without shame and support to organise materials. Expectations should be based on functional ability in that setting, not on age alone or on what the student can manage on their best day.

When emotions run high, connection usually comes before correction. Reduce demands where possible, use a calm voice and revisit the issue once the person is regulated. Consequences that rely on remembering rules, anticipating outcomes or learning from punishment may not teach the intended lesson. Co-regulation, repetition and practical repair are more likely to build skills over time.

Looking beyond the label

Families are often told to be consistent, but consistency should not mean treating a person as though their needs never change. Hunger, fatigue, sensory overload, anxiety, illness and unfamiliar environments can all affect capacity. A flexible support plan is not lowering expectations. It is scaffolding skills so that expectations become achievable.

For adults, recognition can be especially meaningful. Some have spent years being called lazy, careless or unreliable when they were living with unsupported neurodevelopmental needs. Understanding FASD or ADHD can open the door to more suitable help with housing, employment, budgeting , relationships, health appointments and daily routines. It can also support self-compassion.

No diagnosis defines a person’s future. People affected by FASD deserve environments that recognise their strengths, respect their dignity and provide support without judgement. When families and professionals understand the difference between cannot and will not, they can begin to create the safety and structure that allow a person to grow.

For more information...

Please contact FASD Hub Ireland on 065 670 3096 Open Monday to Friday 10am to 4pm. FASD Hub Ireland is a parent led, peer supportive, national telephone helpline provided by volunteers who have living experience of Foetal Alcohol Spectrum Disorder.

FASD Versus Trauma Responses and Support

Fri, 11 Sep 2026 19:36:00 GMT

FASD Versus Trauma Responses and Support

When a child, young person or adult is overwhelmed, shuts down, becomes highly alert, reacts strongly to change or struggles to trust others, it can be tempting to seek one simple explanation. Yet FASD versus trauma responses is rarely an either-or question. Foetal Alcohol Spectrum Disorder (FASD) is a lifelong neurodevelopmental disability caused by prenatal alcohol exposure. Trauma can affect a person’s sense of safety, relationships, body and stress response. Both may be present, and both deserve understanding without judgement.

For families and professionals, the most helpful starting point is not, “What is wrong with this person?” It is, “What might their brain and body be communicating, and what support will help them feel safer and more able to cope?” This shift protects dignity and helps us build on strengths rather than focusing only on challenges.

Why FASD and trauma responses can look alike

FASD can affect brain development in ways that influence memory, attention, impulse control, sensory processing, communication, sleep, emotional regulation and understanding cause and effect. A person may know a rule one day but be unable to use it in a busy, stressful or unfamiliar moment. They may appear to agree with an instruction, then forget it quickly. They may become overwhelmed by noise, demands, waiting, transitions or unexpected change.

Trauma responses can also involve heightened alertness, avoidance, distress, shutdown, anger, sleep challenges, concentration challenges and difficulty trusting adults. A person who has experienced frightening, unsafe or unpredictable events may be constantly scanning for danger. Their nervous system may react before they have words to explain what is happening.

Because the outward signs can overlap, people affected by FASD are sometimes assumed to be deliberately defiant, uncaring or unwilling. Equally, trauma may be overlooked when every challenge is attributed to FASD. Neither assumption is fair or useful. Behaviour is communication, but it is not a diagnosis.

FASD versus trauma responses: the key distinction

A trauma response is linked to experiences that have overwhelmed a person’s ability to cope or feel safe. With appropriate, consistent support and safety, some trauma-related responses may lessen over time. FASD, however, is lifelong. It reflects differences in brain development that can continue to affect daily functioning across childhood, adolescence and adulthood, although the support needed will change over time.

This does not mean a person with FASD cannot heal from trauma, learn new skills or thrive. They can. It means that trauma support alone may not address neurodevelopmental needs such as working memory challenges, sensory differences, difficulty generalising learning or vulnerability in social situations. A person may need information repeated calmly, routines made visible, tasks broken into smaller steps and trusted adults who adapt expectations to their developmental functioning.

It is also possible for an individual to have both FASD and trauma. Many children and adults affected by FASD have experienced loss, disrupted care, stigma, misunderstanding or repeated experiences of failure. These experiences can add to stress. A diagnosis should never be used to dismiss someone’s lived experience, and a trauma history should never prevent consideration of an appropriate FASD assessment.

Look beyond the visible moment

The same action can have very different causes. A student leaving a classroom may be escaping sensory overload, trying to avoid a reminder of a frightening experience, struggling to understand the work, or responding to several pressures at once. A young person who seems unconcerned after an incident may be masking distress, have difficulty reading social cues, or need extra time to process what has happened.

Context matters. Families and professionals can begin to notice patterns: what happened before the response, what the environment was like, who was present, whether there was noise or change, and what helped the person recover. This is not about scrutinising someone or collecting evidence against them. It is about becoming curious and reducing avoidable stress.

It can help to remember that chronological age does not always reflect developmental age in every area. Someone may speak confidently and seem capable, while needing much more support with planning, emotional regulation, money, time, safety or social judgement. Expectations based solely on age can unintentionally increase shame and overload.

Support that helps whether the cause is FASD, trauma or both

A trauma-informed approach is valuable, but people affected by FASD also need FASD-informed support. Safety, predictability and connection are essential, alongside practical adjustments that recognise neurodevelopmental differences.

Use clear, concrete language. Give one instruction at a time and check understanding without putting the person on the spot. Visual prompts, written reminders, routines and advance notice of change can reduce the load on memory and processing. Rather than asking, “Why did you do that?”, try, “What happened just before this?” or, “What would make the next step easier?”

Regulation comes before reasoning. When someone is overwhelmed, explanations, consequences and lengthy conversations are unlikely to land. First reduce demands, lower noise, offer a calm space, use a familiar grounding strategy and allow time. Talk through learning later, when the person feels settled enough to take it in.

In education settings , collaboration between family, teachers, SNAs or Special Needs Assistants, and relevant support staff can make a meaningful difference. Helpful adjustments may include predictable transitions, reduced verbal load, movement or sensory breaks, visual timetables, a named safe adult and work presented in manageable chunks. The aim is not to lower aspiration. It is to provide the scaffolding that makes success possible.

At home, consistency is often more effective than punishment. This may mean preparing for appointments, keeping essentials in the same place, offering limited choices, using checklists and revisiting plans kindly. For teenagers and adults, support may be needed with travel, budgeting, medication routines, forms, employment expectations or managing online safety. Independence is built through repeated, supported practice, not by withdrawing support too soon.

Why labels alone are not enough

Receiving a diagnosis or identifying a trauma history can bring relief. It can help families make sense of years of unanswered questions and guide professionals towards better support. But a label should open doors to understanding, not close down possibility.

An appropriate assessment considers the whole person: prenatal alcohol exposure where this information is available, developmental history, health, learning, communication, sensory needs, mental health, strengths, family context and current challenges. Lack of confirmed information about prenatal alcohol exposure should never be treated as a reason to blame a child, adult or family member. Many families carry gaps in information that are outside their control.

Avoid approaches that rely on shame, repeated sanctions or assumptions that a person will learn from consequences in the same way as others. These can deepen stress and damage relationships. Instead, ask what skill, support or environmental change is missing. A person may need co-regulation before self-regulation, practical teaching before independence, and compassion before they can risk trying again.

When to seek further support

If FASD may be part of the picture, it is reasonable to seek FASD-specific information and discuss the possibility of an appropriate assessment with relevant health professionals. Keep a short record of patterns, strengths, daily living challenges and supports that have helped. This can make conversations with services clearer.

If someone is showing signs of significant distress, feels unsafe, talks about harming themselves or others, or their functioning has changed suddenly, seek urgent professional support through the appropriate local service. Safety always comes first.

Families should not have to work this out alone. Peer support can offer something services cannot always provide: the reassurance of speaking to people who understand the everyday reality, listen without judgement and recognise the effort behind every small step forward.

The most compassionate response is to stay curious, lower blame and offer support that fits the individual in front of you. Whether the challenges relate to FASD, trauma or both, understanding can become a foundation for safety, belonging and hope.

For more information...

9th September Is International FASD Awareness Day

Wed, 09 Sep 2026 19:35:00 GMT

9th September Is International FASD Awareness Day

At 9.09am on 9th September, people around the world pause to mark a message that deserves to be heard clearly and without judgement: 9th September is International FASD Awareness Day. It is a day to recognise people living with Foetal Alcohol Spectrum Disorder (FASD), to stand alongside their families, and to strengthen prevention through accurate, compassionate information.

For many families, FASD awareness is not confined to one date. It is present in the daily work of supporting regulation, communication, memory, sleep, sensory needs, learning, relationships and safety. International FASD Awareness Day creates a vital opportunity to make those experiences more visible, challenge misunderstanding and ask for support that truly fits.

Why 9th September matters

The date and time are deliberate. The ninth day of the ninth month, marked at 9.09am, represents the nine months of pregnancy and the importance of an alcohol-free pregnancy. It is a public-health message, but it must never become a reason to blame or shame people.

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. Alcohol can affect the developing brain and body at any stage of pregnancy, sometimes before a person knows they are pregnant. The impact varies greatly from one individual to another. Some people may have clear needs from early childhood; others may go unrecognised for years, particularly when their challenges are misunderstood as defiance, poor parenting, anxiety or a lack of effort.

Awareness matters because recognition can change the response. When families, schools, health services and communities understand FASD, they can move away from asking, ‘What is wrong with them?’ and towards asking, ‘What support will help them thrive?’

International FASD Awareness Day is about people, not labels

A diagnosis or appropriate assessment can offer a framework for understanding someone’s experiences. It does not define their personality, talents, hopes or future. People with FASD have individual strengths, interests and abilities. They may be warm, creative, practical, determined, funny, caring or highly skilled in areas that are meaningful to them.

At the same time, FASD can involve significant and lifelong challenges. A person may understand something in one moment and be unable to recall or apply it later. They may find abstract language, time, money, cause and effect, transitions or sensory environments overwhelming. Stress can make these challenges more visible. This is not a matter of choosing not to cope.

The most helpful approach is to adapt the environment and build on strengths. Clear routines, calm communication, repeated teaching, visual prompts, movement breaks and realistic expectations can reduce pressure. What helps will depend on the person, their age, their health, their home life and the demands around them. There is no single strategy that works for every family.

Recognition can reduce isolation

Families often describe a long path to answers. They may have known from an early age that their child needed more support, while being told to wait, try harder or use approaches that did not reflect their child’s neurodevelopmental needs. Adults with FASD may also have spent years feeling misunderstood, especially if they did not receive recognition when they were younger.

This uncertainty can be exhausting. It can affect family relationships, education, work, finances and wellbeing. Carers may be navigating appointments and services while responding to needs that do not fit neatly into one system. A compassionate response acknowledges that load rather than adding to it.

Appropriate assessment matters because it can help identify a person’s profile of strengths and support needs. It can also inform practical planning across health, education, social care and daily living. Assessment is not about placing limits on someone. It is about making sure expectations, communication and supports are fair and informed.

For a student, this may mean predictable classroom routines, instructions broken into smaller steps, visual supports and extra time to process information. Teachers, SNAs and other education professionals can make a substantial difference when they understand that a repeated question or forgotten instruction may reflect a brain-based need, not unwillingness. Consistency between home and school is valuable, but families should not be expected to carry this work alone.

Prevention needs compassion as well as clarity

International FASD Awareness Day is also a prevention day. The safest choice during pregnancy, and when planning to conceive, is not to drink any alcohol. This message needs to be accessible, consistent and supported by services that people can trust.

Prevention is most effective when it is free from stigma. People need accurate information before pregnancy and during pregnancy, alongside practical support where alcohol use is a concern. Fear of blame can stop people from seeking help. Kindness, privacy and respectful care make it more likely that someone will ask questions, share what is happening and accept support.

It is equally important to remember that no family should be judged because FASD is part of their story. Blame does not improve outcomes for a child, young person or adult living with a lifelong neurodevelopmental disability. Understanding, support and early action do.

What meaningful awareness looks like

Awareness is not simply posting a fact for one day of the year. It is reflected in the decisions people make afterwards. A health professional might consider prenatal alcohol exposure as part of a careful developmental history. An education setting might review whether its supports are genuinely accessible for students with additional needs. An employer might offer clear instructions, predictable tasks and a supportive induction. A family member might replace criticism with curiosity.

It also means listening to people with living experience of FASD. Families and individuals affected by FASD understand the gap between a plan on paper and the realities of a difficult morning, a distressing appointment or a student who has reached capacity. Their insight should shape services, training and policy.

If you are marking the day in a school, workplace or community group, keep the message simple and respectful. Share the fact that FASD is a lifelong neurodevelopmental disability. Explain that prenatal alcohol exposure can affect development. Encourage an alcohol-free pregnancy. Most importantly, make room for the voices of people affected by FASD and avoid language that suggests fault, failure or hopelessness. You can always wear red shoes, take a picture and post to your social media with the hashtag #RedShoesRock, or if you can, light up your home or workplace building in red, and capture the moment at night - then share it across your social media. You'll be joining buildings across Ireland including Leinster House, and Enniskillen Castle, as well as landmarks across the world like Niagara Falls. Please remember to tag @FASDIreland in your message, and ask family and friends to like and share your posts.

A day to ask for better support

Awareness must lead to action. People affected by FASD need timely pathways to appropriate assessment, FASD-informed health care, education supports, family peer connection and practical help through the systems that shape their lives. Professionals need training that goes beyond a brief definition and helps them respond in ways that are informed, realistic and compassionate.

In Ireland, FASD Ireland brings together living experience, peer support , information and advocacy so that families do not have to navigate these challenges in isolation. Connecting with others who understand can bring practical ideas, reassurance and the reminder that you are not alone.

On 9th September, a pause at 9.09am can be a small but powerful act. Let it be a commitment to see people more clearly, support families without judgement and build communities where every person with FASD is met with understanding, dignity and the chance to flourish.

For more information...

On International FASD Awareness Day - Tristan speaks to Clare FM

Wed, 09 Sep 2026 11:52:01 GMT

On International FASD Awareness Day - Tristan speaks to Clare FM

Listen back to the interview by clicking below.

Is FASD a Disability? What Families Need to Know

Sun, 06 Sep 2026 19:29:00 GMT

Is FASD a Disability? What Families Need to Know

When a child, young person or adult is struggling to manage everyday demands, families are often asked to explain needs repeatedly - at school, in appointments and when seeking practical help. So, is FASD a disability? Yes. Foetal Alcohol Spectrum Disorder (FASD) is a lifelong neurodevelopmental disability resulting from prenatal alcohol exposure. It can affect the way a person’s brain develops and how they manage daily life.

That definition matters, but it is not the whole story. Every person with FASD is different. Some needs may be highly visible, while others may be missed because the person speaks well, is friendly, or appears able to cope for short periods. Support should be based on the person in front of us: their strengths, their challenges and the barriers they meet in everyday environments.

What does lifelong neurodevelopmental disability mean?

FASD can affect brain-based skills used throughout life. These may include memory, attention, planning, organisation, communication, emotional regulation, sensory processing , understanding consequences, managing money or time, and coping with change. A person may know a rule one day and struggle to apply it in a busy, stressful or unfamiliar situation the next.

This is not a matter of unwillingness, poor parenting or a lack of effort. It reflects differences in brain development. Expectations that rely on a person simply trying harder can increase shame and distress, particularly when needs have not been recognised.

A lifelong disability does not mean a person cannot learn, contribute, enjoy relationships or build a meaningful life. People with FASD have abilities, interests and hopes like everyone else. The difference comes when environments, communication and expectations are adapted so that those strengths can grow. Consistent support, practical scaffolding and compassionate relationships can make a profound difference.

Is FASD recognised as a disability in Ireland?

FASD can meet the definition of disability used across many Irish services and legal settings because it is a lifelong complex and challenging condition that may substantially affect day-to-day activities. However, access to a particular support, scheme or accommodation is rarely decided by a diagnosis alone. Each service may have its own criteria and assessment process.

In practice, this means it can be helpful to describe functional needs clearly. Rather than only saying that a person has FASD, explain what support helps them to participate. For example, they may need instructions given one step at a time, reminders that do not rely on memory, extra processing time, a calm space, visual routines, help with transitions or support to understand forms and appointments.

This approach can be especially important where a person is awaiting an appropriate assessment or diagnosis. Their needs are real now. Families should not have to wait for a label before a student is offered reasonable, needs-led support, or before an adult is treated with dignity and understanding.

Diagnosis and disability are not the same thing

A diagnosis identifies a health condition through an appropriate clinical assessment. Disability describes the impact a condition may have on a person’s ability to take part in daily life, particularly where systems and environments do not meet their needs. These ideas overlap, but they are not interchangeable.

Not everyone with prenatal alcohol exposure has FASD. FASD should only be diagnosed through an appropriate assessment by professionals with relevant knowledge and experience. Equally, a person can have significant additional needs even when diagnosis is not yet available, incomplete or complicated by other experiences and conditions.

Many people affected by FASD have faced trauma, disrupted care, mental health challenges, learning differences or other diagnoses. None of this makes FASD less relevant. It does mean that support needs to be thoughtful and person-centred, rather than based on assumptions about one diagnosis.

Why recognition can make a difference

For families, recognition can bring relief after years of being told that a child is naughty, defiant, lazy or simply not trying. For adults, it can offer a more accurate explanation for lifelong challenges that may have been misunderstood. Recognition does not change who a person is. It can change how others respond to them.

In education, a strengths-based understanding of FASD can help teachers and SNAs or Special Needs Assistants move away from approaches that punish disability-related behaviour. A student who repeatedly forgets equipment may need a visual checklist and spare materials. A student who becomes overwhelmed at lunchtime may need a planned quiet option. A young person who agrees to something without understanding may need language checked gently and privately.

At work, in healthcare, welfare, housing or legal settings, adjustments can reduce preventable harm. Clear written information, a trusted support person, flexible communication, reminders and extra time are often simple changes. They may be the difference between a person being viewed as non-compliant and being genuinely able to take part.

Support should follow needs, not stereotypes

There is no single FASD profile. One person may have significant sensory needs and little awareness of danger. Another may manage well at work but become exhausted by social demands and paperwork. Someone may appear independent while relying heavily on family members to organise food, travel, appointments and finances.

Because many challenges are hidden, people with FASD are sometimes expected to cope at a level beyond their current capacity. This can lead to cycles of anxiety, exclusion, conflict and burnout. Looking beneath behaviour is kinder and more effective. Ask what may be making the task hard: Is the language too complex? Is the environment too noisy? Has the routine changed? Is the person overloaded, hungry, tired or worried?

Support is not about lowering all expectations. It is about making expectations achievable. Break tasks into smaller steps, offer choices without overwhelming, use concrete language, practise skills in the setting where they are needed and keep routines predictable where possible. Build on what is working. A person’s interests, humour, creativity, determination and connection with trusted people are valuable starting points.

What families and professionals can do next

If you think FASD may explain a child’s or adult’s needs, begin by recording everyday examples. Note what is going well, what situations bring challenge, what support has helped and what happens when demands become too great. This can make conversations with schools, health professionals and services more specific.

You can also ask for needs-led supports while considering assessment pathways . Families may need help to understand diagnosis, education supports, welfare concerns, family stress or how to advocate without having to become an expert overnight. Professionals can make a meaningful difference by listening to carers and to people with lived experience, and by seeking FASD-specific training rather than relying on general assumptions.

FASD Ireland understands that these conversations can carry grief, uncertainty and fear of judgement. You are not alone, and you do not need to have every answer before reaching out. A community that listens without judgement can help families find language for what they are seeing and practical ways forward.

A more understanding response starts here

Calling FASD a disability should never be used to limit a person or decide what their future will be. It should open the door to recognition, appropriate support and more compassionate expectations. When we understand that FASD is a lifelong neurodevelopmental disability, we can stop asking why someone cannot simply cope and start asking what will help them thrive.

For more information...

FASD Awareness Starts With Listening and Support

Sat, 05 Sep 2026 00:04:00 GMT

FASD Awareness Starts With Listening and Support

FASD awareness is not simply knowing what the letters stand for. It is recognising that Foetal Alcohol Spectrum Disorder is a lifelong neurodevelopmental disability, understanding how it may affect a person’s daily life, and responding without blame or judgement. For many families, being heard and believed is the first meaningful step towards support.

A child, young person or adult with FASD may be bright, caring, funny, creative and determined, while also facing significant challenges with memory, attention, communication, sensory processing, emotional regulation, planning or understanding consequences. These challenges are often invisible. When others see only behaviour, rather than the brain-based need beneath it, people with FASD can be misunderstood for years.

Awareness changes that. It helps families, schools, health services, employers and communities replace assumptions with curiosity, practical support and respect.

What FASD awareness should mean

Foetal Alcohol Spectrum Disorder can occur when alcohol is consumed during pregnancy. Alcohol can affect the developing brain at any stage of pregnancy, and there is no known safe amount or safe time to drink alcohol when pregnant or trying to become pregnant. Prevention information needs to be clear, compassionate and free from stigma.

FASD is not a reflection of a person’s worth, their family’s love or anyone’s effort. It is also not a parenting issue that can be solved through stricter rules, rewards or consequences alone. People with FASD need informed support that recognises the effects of prenatal alcohol exposure on the brain.

Good awareness holds both truths: preventing prenatal alcohol exposure matters, and people already living with FASD deserve understanding, dignity and support throughout life. Blame can stop people asking questions or seeking help. Compassion makes earlier recognition and appropriate support more possible.

Why FASD is so often missed

FASD does not always look the way people expect. Many people have no obvious physical features, and their strengths can mask the level of support they need. A young person may speak confidently, for example, but struggle to understand abstract language, remember multi-step instructions or apply a lesson learned yesterday to a new situation today.

This uneven profile can be confusing. Families may hear that their child is capable, yet see how exhausted they become after managing an ordinary school day. An adult may appear independent in one setting but need considerable support with money, appointments, time, travel, housing or keeping safe in another.

Without FASD awareness, these differences are too easily labelled as laziness, defiance, carelessness or a lack of interest. That can lead to repeated sanctions, exclusion from opportunities and a deep sense of failure. With awareness, the question becomes more helpful: what is making this hard, and what support would make success more likely?

FASD awareness in everyday settings

Awareness is most valuable when it changes everyday responses. It is not enough for a professional to have heard of FASD if a family still has to explain the condition from the beginning at every appointment, meeting or service referral.

In education, an FASD-informed approach can help students feel safer and more able to learn. Teachers and SNAs or Special Needs Assistants may need to use short, concrete instructions, visual prompts, repetition and predictable routines. Extra processing time, movement breaks and a calm space can also make a real difference. Expectations should remain respectful, but support should be matched to the student’s additional needs rather than their chronological age alone.

At home, carers often become skilled observers. They may notice that a busy supermarket, an unexpected change of plan or too many verbal instructions can lead to overwhelm. Planning ahead, reducing demands at stressful times and offering one step at a time are not ‘giving in’. They are practical ways of scaffolding strengths and reducing unnecessary pressure.

For adults, awareness can influence whether services offer information in an accessible format, whether an employer provides clear written routines, and whether a person is given time to understand a decision before being asked to agree. Small adjustments can protect confidence, independence and wellbeing.

Appropriate assessment can open doors

Families often spend a long time searching for an explanation for the challenges they are seeing. Some may first encounter concerns around learning, sleep, sensory needs, anxiety, behaviour, relationships or managing everyday tasks. An appropriate assessment can help build a fuller picture of a person’s needs, strengths and support requirements.

Assessment is not about placing a label on a person. It can provide language for experiences that have previously been misunderstood, guide support planning and help families advocate more effectively. It may also help professionals understand why approaches that work for other people have not worked here.

The pathway can feel fragmented and slow. Keeping a record of developmental history, current challenges, school observations and any available information about prenatal alcohol exposure may be helpful when seeking advice. Not every family will have access to all background information, particularly adoptive families, foster carers and kinship carers. A lack of information should never be treated as a reason to dismiss genuine support needs.

Listening to families is part of awareness

Parent-led and lived-experience-led support matters because FASD affects whole families. Carers may be managing appointments, school meetings, financial pressure, disrupted sleep, safeguarding concerns and the emotional toll of being misunderstood. They may also be supporting a young person who feels different, overwhelmed or ashamed because others have failed to understand their needs.

No family should have to carry this alone. Peer support offers a community that listens without judgement and understands that progress is rarely a straight line. It can be a place to share practical ideas, ask questions that feel too small or too personal for a formal appointment, and find reassurance after a challenging day.

FASD Ireland supports people affected by FASD with practical guidance, peer connection, condition-specific information and training. Reaching out does not mean you have failed. It means you are looking for support that fits the reality of your family’s life.

Prevention messages must be clear and kind

Public awareness has a vital prevention role. The message is straightforward: the safest choice when pregnant or trying for a baby is not to drink alcohol. But how that message is communicated matters.

Fear, shame and judgement can make people less likely to seek healthcare or disclose concerns. A compassionate approach gives accurate information, encourages early conversation and recognises that pregnancy and alcohol use can involve complex circumstances. Healthcare and community professionals have an opportunity to offer non-judgemental advice, timely support and respectful listening.

Prevention and support are not competing priorities. A society that takes prevention seriously should also ensure that children, young people and adults with FASD are recognised and supported for life.

Turning awareness into action

Real FASD awareness asks more of us than a poster or an annual campaign. It asks professionals to seek training, schools to make reasonable and informed adjustments, services to communicate clearly, and communities to stop equating invisible disability with bad behaviour.

It also asks us to notice strengths. A person with FASD may have remarkable empathy, practical talents, humour, honesty, persistence or a strong sense of fairness. Strengths do not remove support needs, but they offer a foundation on which confidence, skills and belonging can grow.

If FASD may be part of your family’s story, you do not need all the answers before asking for help. The next conversation, with someone who understands and listens carefully, can make the path ahead feel less isolating.

For more information...

FASD Education Planning That Starts With Strengths

Wed, 02 Sep 2026 00:04:00 GMT

FASD Education Planning That Starts With Strengths

A student with FASD may arrive at school bright, funny, sociable and keen to please, yet still be overwhelmed by a busy classroom, forget an instruction given moments ago, or react strongly when a familiar routine changes. FASD education planning is most helpful when it starts there: with the real student in front of us, their strengths, their neurodevelopmental needs and the practical adjustments that make learning feel possible.

Foetal Alcohol Spectrum Disorder is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. It can affect memory, attention, executive functioning, sensory processing, communication, emotional regulation and understanding of time, cause and effect. These challenges are not a sign that a student is unwilling to learn, badly behaved or poorly parented. They reflect differences in brain development and require informed, compassionate support.

A good plan should reduce demands that overload the student while building on what helps them succeed. It should also give families, teachers and SNAs a shared way of understanding needs, rather than leaving everyone to respond to a crisis after it happens.

Start with understanding, not assumptions

FASD is often described as a hidden disability. A student may speak confidently, appear capable in one setting and manage a task one day but not the next. This uneven profile can lead adults to assume they are being oppositional, lazy or deliberately disruptive. In reality, the student may not have understood the language used, may have forgotten the first step, or may be coping with noise, uncertainty or anxiety that others cannot see.

Education planning should therefore look beyond attainment alone. Ask what the student can do independently, what they can do with support and what situations consistently create stress. Notice their interests, preferred ways of communicating, sensory needs, friendships, creativity and practical skills. Strengths are not an optional positive addition to a plan. They are the foundation for connection, confidence and meaningful progress.

It is also useful to recognise that behaviour is communication . A student leaving the room, shutting down, arguing or becoming distressed may be showing that a demand has exceeded their current capacity. The question is not simply, ‘How do we stop this?’ It is, ‘What happened before this, what need is being expressed, and what support could prevent it next time?’

Make FASD education planning specific and shared

A general statement that a student needs ‘extra support’ is rarely enough. Effective FASD education planning names the situations that are challenging and agrees what adults will do differently. This gives the student consistency, particularly when several staff members are involved.

A planning meeting can bring together the parent or carer, the student where appropriate, teachers, SNAs, school leadership and relevant professionals. Families hold vital knowledge about what helps at home, during transitions and after a difficult day. Their observations should be treated as expertise, not as an afterthought. Equally, staff need space to explain classroom demands and identify changes that are realistic within the school day.

The plan should use clear, practical language. Rather than saying ‘improve organisation’, it might state that the student will have one named adult to check their visual timetable at the start and end of each day. Rather than saying ‘manage emotions’, it might identify a quiet, agreed space, a simple card or signal to request a break, and an adult who responds calmly without lengthy questioning.

Priorities will depend on the individual, but a useful plan often covers these areas:

predictable routines, transitions and advance notice of change
communication, including short instructions and visual supports
sensory regulation, movement and access to a calm space
learning tasks, assessment arrangements and manageable workload
relationships, emotional wellbeing and responses when the student is overwhelmed.

Not every support will be needed by every student. The aim is not to make school smaller or less ambitious. It is to make expectations accessible and to scaffold skills over time.

Turn helpful ideas into everyday classroom practice

Consistency matters more than elaborate paperwork. A beautifully written plan cannot help if staff have not had an opportunity to understand it or if supports disappear during busy moments. Keeping key strategies brief and visible can make a significant difference.

Many students with FASD benefit when information is concrete. Teachers and SNAs can give one instruction at a time, then ask the student to show or explain the first step. Visual timetables, checklists, labelled materials and worked examples reduce the load on working memory. It is usually more effective to say, ‘First put your name on the page, then complete questions one and two,’ than ‘Get started on your work.’

Time can be particularly difficult to understand. A visual countdown, a timer and warnings before a transition can make the end of an activity less abrupt. Changes to routine should be communicated early where possible, using simple language. If a substitute teacher, school event or room change is expected, preparation can prevent a day of anxiety from becoming a day of distress.

Sensory needs deserve the same attention as academic ones. Noise, crowded corridors, bright lights, scratchy uniforms or the unpredictability of break times may affect a student’s ability to learn. Small adjustments - such as a quieter work area, planned movement breaks, ear defenders where appropriate, or permission to enter a busy space a little earlier or later - can protect regulation and participation.

When a student is overwhelmed, adult calm is a support in itself. Reasoning, consequences and detailed conversations can wait until the student is settled. In the moment, use few words, reduce the audience, offer familiar choices and focus on safety. Afterwards, the team can reflect without blame: was the work too long, was an instruction unclear, did a transition come too quickly, or was the environment too demanding?

Plan for learning without mistaking support for lowered expectations

Students with FASD can learn, make progress and contribute richly to their school communities. However, progress may not be linear, and a skill learned in one place may not transfer automatically to another. A student who can follow a routine in a quiet classroom may need the routine explicitly retaught for the sports hall, a school trip or a new academic year.

Breaking learning into smaller steps helps, as does repetition without shame. Shorter tasks, reduced copying, access to assistive technology, practical demonstrations and opportunities to answer verbally may show what a student knows more accurately than a lengthy written task. Assessment arrangements should reflect the student’s profile and should be discussed early, rather than only when pressure is highest.

This does not mean removing every challenge. It means offering the right level of support so that challenge is achievable. A student may need an adult to begin a task with them, a visual prompt to continue independently, or an alternative way to demonstrate learning. Success builds motivation; repeated experiences of failure can quickly damage it.

Review the plan at the points where school changes

Education plans need to be living documents. A support that works in primary school may not be enough when a student moves to post-primary education, changes class, begins work experience or faces a more complex timetable. Transition planning should begin early and include visits, photographs, a map, introductions to key adults and a clear explanation of what will happen on the first days.

Review meetings are also an opportunity to listen to the student. They may not describe their needs in clinical language, but they can often say which lessons feel safe, when they become tired, who helps them understand and what makes them worry. Their voice should shape the plan wherever possible.

If you are concerned that a student’s needs are not being recognised, keep a simple record of patterns: what happened, what came before it, what support was offered and what helped. This can make conversations with the school and relevant services clearer. Appropriate assessment and FASD-informed training can also help adults understand the full picture and avoid approaches that unintentionally increase stress.

No family should have to carry this work alone. FASD Ireland understands that education can become exhausting when parents and carers are repeatedly asked to explain a student’s needs. A community that listens without judgement can offer both reassurance and practical knowledge. The most meaningful plan is one in which the student is known, their strengths are noticed, and the adults around them agree to adapt the environment rather than expecting the student to cope without support.

For more information...

Best FASD Family Resources for Everyday Support

Wed, 26 Aug 2026 00:03:00 GMT

Best FASD Family Resources for Everyday Support

When a child, young person or adult’s needs begin to make more sense through the lens of Foetal Alcohol Spectrum Disorder (FASD), families often face a second challenge: knowing where to turn next. The best FASD family resources do more than explain a diagnosis or list symptoms. They offer practical help, trusted information and connection with people who understand that FASD is a lifelong neurodevelopmental disability - not a reflection of poor parenting, a lack of effort or a person’s potential.

No single resource will meet every need. A family may need support with assessment, school, sensory needs, sleep, communication, welfare, relationships or simply the exhaustion of carrying too much alone. The most helpful starting point is to build a small circle of support that respects the individual, recognises their strengths and reduces the pressure to manage everything at once.

Start with information that is accurate and kind

FASD can affect the brain in ways that are not always visible. A person may be friendly, verbal and keen to please, while also finding memory, planning, cause and effect, emotional regulation, sensory processing or everyday routines challenging. This uneven profile can be confusing for families and professionals alike.

Choose information that describes FASD with care and precision. It should acknowledge prenatal alcohol exposure without blame, explain that people can have different strengths and support needs, and avoid presenting behaviour as deliberate defiance. Resources that focus only on challenges can leave families feeling discouraged. Better guidance helps you ask, “What is this person communicating?” and “What support would make this task more manageable?”

It can help to keep a notebook or secure folder for information that feels relevant. Record examples of what supports the person well, what makes situations harder and what changes have made a positive difference. This is useful for family conversations, appointments and meetings with services, but it also creates a clearer picture of strengths over time.

Find peer support before you reach crisis point

Peer support is one of the most valuable resources available to families affected by FASD. Speaking with another parent, grandparent, foster carer, adoptive parent or kinship carer can bring relief that a leaflet cannot provide. You do not need to explain why a simple morning routine has become overwhelming, why a child can remember a detail from years ago but not yesterday’s instruction, or why a family outing requires so much preparation.

A good peer group is a community that listens without judgement. It does not promise a quick fix or compare families. Instead, it makes room for honesty, shared problem-solving and the recognition that carers need support too. Some people prefer telephone support or an online group, while others benefit from meeting in person. The right option depends on your circumstances, privacy needs and capacity at that time.

FASD Ireland provides lived-experience-led information and peer support for people affected by FASD. Reaching out early can make fragmented systems feel less isolating and may help families identify their next practical step.

Look for support that fits the person, not a label

The best FASD family resources encourage an individualised approach. Two people with FASD may need very different support, even when their challenges appear similar. Age, communication style, sensory needs, physical health, trauma history, family circumstances and access to services all matter.

Practical resources are often the ones that translate understanding into everyday adjustments. A visual timetable may help one child anticipate the day. A young adult may benefit from reminders, a simplified plan for appointments or help breaking household tasks into smaller steps. An adult may need reasonable adjustments at work, support with money management or an advocate for meetings.

The aim is not to make someone appear more independent than they are ready to be. It is to scaffold skills, safety and confidence in ways that are realistic. Support can be increased or reduced as circumstances change. Needing help with one area does not erase ability in another.

Use assessment and diagnosis resources carefully

For families seeking an appropriate assessment , the process can feel uncertain and slow. Useful resources should explain what information may be needed, how to prepare for appointments and why a full understanding of a person’s developmental history is valuable. Assessment is not about proving that somebody is “bad enough” to deserve help. It can provide language for needs that have long been misunderstood and guide more appropriate supports.

Gathering records can be emotionally demanding, particularly where family history is incomplete or sensitive. Take this at a pace that protects wellbeing. You may find it helpful to bring a trusted person to appointments, write down questions beforehand and ask for information to be explained in plain language.

A diagnosis can open doors for some people, but support should never be withheld while a family waits. If a person has clear neurodevelopmental needs, practical adjustments can begin now. Predictability, reduced verbal overload, calm communication and sensory-aware environments are helpful for many people, regardless of where they are on an assessment pathway.

Make education resources part of a shared plan

School can be a source of belonging and achievement, but it can also place heavy demands on attention, memory, transitions and emotional regulation. Resources for education should help families work constructively with teachers, SNAs or the National Council for Special Education (NCSE) , and other adults like caretakers and school bus drivers who have contact with the student. The school may be a FASD Aware School , or be interested in completing the in-school training provided by FASD Ireland.

The most useful plans are specific. Rather than saying a student needs “more support”, describe what helps: one instruction at a time, visual prompts, movement breaks, a quiet place to regulate, advance notice of changes, extra processing time or a familiar adult at key transitions. It is equally important to identify strengths, interests and subjects where the student feels capable.

Regular communication between home and school can prevent small concerns from becoming major ones. Keep it manageable. A short weekly update may be more sustainable than trying to document every event. Families should not be expected to become the sole experts in a school setting. FASD-informed training helps staff understand that behaviour may reflect brain-based needs, stress or a mismatch between demands and available support.

Choose resources that support the whole family

FASD affects family life, not only the person with the diagnosis or suspected diagnosis. Siblings may need time and truthful, age-appropriate explanations. Grandparents may want guidance on why approaches that worked in the past are not working now. Carers may need permission to acknowledge grief, frustration and fatigue alongside love and pride.

Look for resources that treat respite, counselling, peer connection and practical help as legitimate needs rather than luxuries. A calm home routine may involve fewer activities, more preparation and different expectations from those of other families. That is not failure. It is responsive parenting and caring.

It can also be useful to agree a few shared phrases within the family. “Let’s make this smaller” can be more supportive than repeating an instruction. “You are having a hard time, not giving us a hard time” can shift the tone of a difficult moment. These changes do not remove every challenge, but they can protect connection when stress is high.

Know what to expect from trusted FASD resources

Not every resource is equally helpful. Be cautious of advice that makes sweeping promises, suggests one strategy suits everyone or places responsibility for change entirely on the person with FASD. Equally, avoid material that is so clinical that it loses sight of the person and family in front of it.

The best FASD family resources are evidence-informed, practical and respectful. They explain the lifelong nature of FASD while holding onto hope. They recognise that progress may be gradual and non-linear. They encourage families to plan for transitions, including adolescence and adulthood, rather than assuming support needs disappear at a certain age.

Most of all, good support leaves people feeling more understood, not more judged. You do not have to have every answer before asking for help. One conversation, one adjustment or one supportive connection can make the next day feel more possible.

For more information...

Understanding FASD Communication Challenges

Wed, 19 Aug 2026 00:06:00 GMT

Understanding FASD Communication Challenges

A child may appear to understand a request, say “yes”, and then do something entirely different. An adult may agree to an appointment but struggle to recall the time, place or purpose later that day. These experiences can be mistaken for defiance, a lack of interest or poor motivation. In reality, FASD communication challenges can reflect differences in how the brain receives, processes, remembers and uses information.

Foetal Alcohol Spectrum Disorder is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. Every person with FASD is different, and communication challenges are not a measure of intelligence, effort or potential. With understanding, patience and the right scaffolding, people can communicate more confidently and take a fuller part in home, education, work and community life.

Communication is more than talking

Communication includes listening, understanding words, reading facial expressions, remembering information, finding the right words, taking turns in conversation and recognising what a situation requires. For someone with FASD, one or several of these areas may be challenging, particularly when they are tired, anxious, overwhelmed or in an unfamiliar environment.

A person may be very chatty and use advanced vocabulary, yet have difficulty understanding what has been said to them. They may repeat a phrase they have heard, agree with an adult to avoid pressure, or give an answer they think the listener wants. This can create a painful gap between what others assume they understand and what they have actually processed.

Abstract language can be especially challenging. Phrases such as “pull your socks up”, “be sensible” or “sort it out” may not give enough usable information. Questions with several parts, quick instructions and changing expectations can also be hard to follow. It is not that the person is choosing not to listen. Their brain may need information presented in a clearer, slower and more concrete way.

Why FASD communication challenges can be missed

Many people living with FASD have real strengths in social connection, humour, storytelling, kindness or conversational confidence. These strengths matter and should be recognised. At the same time, they can mask underlying support needs, particularly when someone is expected to manage independently because they sound capable.

Communication is also closely linked with executive functioning, memory, sensory processing, emotional regulation and attention. A young person who cannot explain what happened after an incident may not be withholding information. They may have struggled to sequence events, recall details under stress, understand another person’s point of view or find language quickly enough.

When demands exceed a person’s capacity in that moment, communication may reduce further. They might go quiet, walk away, use repeated words, become tearful or react strongly. These are signs that support is needed, not evidence that a person is being difficult.

Signs that may point to communication support needs

Communication challenges can look different across the lifespan. A child may have difficulty following everyday routines unless each step is shown or repeated. A student may understand a topic during a one-to-one conversation but struggle to respond in a busy classroom. A young adult may find telephone calls, forms, interviews or appointments particularly demanding. An adult may need practical support to understand official letters, manage workplace instructions or speak up during meetings.

Some common patterns include taking language literally, losing track during longer conversations, interrupting or speaking at length without noticing cues, struggling with open questions, misunderstanding tone, and finding it hard to describe needs or feelings. There may also be differences between what a person can say and what they can understand, remember or put into action.

These patterns do not diagnose FASD on their own. They do, however, offer useful information about the kind of support that may help. Appropriate assessment can explore communication alongside wider neurodevelopmental needs, rather than viewing behaviour in isolation.

Ways to make communication clearer

The most helpful changes are often simple, consistent and respectful. They reduce pressure on the person to process information at speed and make success more likely.

Use short, concrete sentences and give one instruction at a time. Rather than saying, “Get ready because we need to leave soon and make sure you have everything,” try, “Put on your coat.” Once that is done, offer the next step. Allow extra time for processing before repeating or rephrasing the request.

It can help to show as well as tell. Visual timetables, written reminders, pictures, checklists, calendars and demonstrations can make information easier to hold onto. For some people, a brief note on a mobile phone or a photograph of the items needed for an outing is more useful than a spoken explanation.

Check understanding gently, without putting someone on the spot. Asking, “What is the first thing we are doing?” is often more useful than, “Do you understand?” A person may say yes because they want the conversation to end, because they are worried about getting it wrong, or because they think they understand until they try to begin.

Offer choices, but keep them manageable. “Would you like tea or water?” is clearer than an open-ended question about what someone wants. If a decision is complex, break it into smaller parts and return to it later if needed.

Supporting communication in education and services

Students living with FASD benefit when adults share an understanding of their communication profile. Teachers and SNAs can support participation by using clear language, visual prompts and predictable routines, while also giving the student private opportunities to ask for clarification. A busy classroom can make it harder to process speech, so reducing background noise or providing written instructions may be helpful.

It is worth considering how information is delivered, not only whether a student can repeat it back. A student may need a task modelled, started alongside an adult, or revisited after a short break. Repetition is not a sign that teaching has failed. It is a reasonable accommodation for a brain that may need more opportunities to encode and retrieve information.

The same principle applies in health, welfare, legal and family services. Avoid jargon where possible, explain one point at a time and provide key information in an accessible format. Offer a trusted supporter where appropriate. Decisions with serious consequences should never rely solely on a person appearing verbally confident in a pressured conversation.

Build on strengths, not assumptions

Communication support should not be about making someone appear more typical. It should help them be understood, express preferences, build relationships and participate with dignity. Notice what already works. Perhaps the person explains things well through drawing, messages, music, humour, practical demonstration or a conversation while walking. These strengths can be scaffolded and used as a bridge when spoken language feels difficult.

Try to separate the person from the challenge. Instead of saying, “You never listen,” consider, “This was a lot of information. Let’s make it easier to remember.” That shift protects trust. It also helps families and professionals stay curious about what is getting in the way, rather than blaming the individual.

For carers, this work can be exhausting. It is reasonable to need support yourself, particularly when communication breakdowns happen repeatedly or other people misunderstand your child, young person or adult family member. You are not alone, and a community that listens without judgement can make a meaningful difference.

With the right language, pace and practical supports, communication can become less about correcting perceived weaknesses and more about creating the conditions in which a person with FASD can be heard.

For more information...

Please contact FASD Hub Ireland on 065 670 3096 open Monday to Friday 10am to 4pm. FASD Hub Ireland is a parent-led, peer-supportive, national telephone helpline provided by volunteers who have living experience of Foetal Alcohol Spectrum Disorder.

CEO Tristan speaks to the Pat Kenny Show on Newstalk

Sat, 15 Aug 2026 10:23:51 GMT

Foetal Alcohol Spectrum Disorder: the disability affecting nearly

400,000 people you may be unaware of.

Our CEO Tristan speaks to Pat Kenny on the Pat Kenny Show on Newstalk.

Foetal Alcohol Spectrum Disorder (FASD) affects 381,000 people and nearly 1 in 10 children in Ireland, leaving the country with the third highest incidence rate in the world.

The disorder, which is an umbrella term for 3 alcohol-related conditions developed during pregnancy, is a neurological disability which can affect brain processing such as sensory functions.

FASD is caused by a foetus being exposed to alcohol during conception or pregnancy, from either parent. Experts claim that consuming a single drink is enough to cause the disorder, something 81% of women living in Ireland have done.

On The Pat Kenny Show, Tristan Casson-Rennie, founder and CEO of advocacy group FASD Ireland, said that FASD poses a daily challenge to those living with the condition.

He differentiated between FASD and Foetal Alcohol Syndrome (FAS), a condition included in the FASD umbrella, where children are born with facial dysmorphism. He said FAS affects “10% of the overall FASD cohort.”

Mr. Casson-Rennie also noted that there are 428 different recognised conditions associated with FASD.

“Ireland is an outlier” for FASD support

Mr. Casson-Rennie said that Ireland was an outlier when compared to countries in Europe and the wider world by “not having a diagnostic pathway for FASD.”

He said multidisciplinary teams are needed before a child can be determined to be suffering from FASD, with several steps required before a positive diagnosis can be reached.

These steps include analysing parents’ exposure to alcohol, blood tests to determine whether symptoms are due to a child’s genetic makeup, and evidence of several of the 428 conditions associated with the disorder.

Consequences

Mr. Casson-Rennie noted that studies have found that the average life expectancy of those living with FASD is 34.

Additionally, other research showed that those living with FASD are “19 times more likely to engage with the judicial system.”

He said this is due to an “impacted short-term memory and a lack of impulse control.”

Demands

Mr. Casson-Rennie called on the government to recognise FASD “and instigate a public health awareness campaign so that people are aware of the risks of prenatal alcohol exposure.”

Additionally, he wants Ireland to develop a diagnosis pathway; “We need clinicians to be trained, and we need a clinical lead at the HSE.”

Lastly, Mr. Casson-Rennie said a framework for support for those living with FASD must be created, as many adults living with FASD “fall through the cracks.”

You can listen to the full interview below.

FASD Adult Support for a More Manageable Life

Wed, 12 Aug 2026 00:06:00 GMT

FASD Adult Support for a More Manageable Life

For many adults, finding the right FASD adult support can come after years of being misunderstood. A person may have been described as careless, impulsive, unmotivated or difficult, when the real picture is a lifelong neurodevelopmental disability linked to prenatal alcohol exposure. Receiving recognition of FASD, whether through appropriate assessment or a growing understanding of personal needs, can bring both relief and grief. It can explain so much, while also raising new questions about what happens next.

Support in adulthood should not be about asking someone to become more independent than their brain can safely manage. It should be about creating the right conditions for them to live with dignity, build on their strengths and take part in the life they want. You are not alone in working this out.

FASD does not end when childhood services end

FASD is lifelong. Yet many supports are designed around children, leaving adults and their families facing a sudden gap when school, paediatric care or child-centred services come to an end. Adult life often brings more decisions, less structure and greater expectations around work, money, housing, relationships and appointments. These expectations can expose challenges that were previously held in place by family routines or school support.

An adult with FASD may be articulate, sociable and eager to please. These strengths can sometimes lead others to overestimate what they can manage without help. A person may agree to a plan without fully understanding it, remember part of an instruction but not the whole sequence, or appear confident in the moment and then struggle to act on what was discussed.

This is not a lack of effort. Differences in executive functioning, memory, processing speed, sensory processing, communication and emotional regulation can make ordinary adult demands feel overwhelming. Support works best when it is based on the person’s day-to-day functioning, rather than assumptions made from their age, appearance or conversation skills.

What meaningful FASD adult support can look like

There is no single support plan that suits every adult with FASD. Needs can change with stress, health, living arrangements and the demands of a particular setting. However, practical, consistent and relationship-based support can make a significant difference.

A trusted supporter may help to turn a large task into a few clear steps, attend an important appointment, explain a letter in plain language or check that an agreement has been understood. This is not about taking over. It is scaffolding - offering the structure that allows a person to use their abilities more successfully.

Predictability matters. Regular routines for meals, travel, medication, bills and sleep can reduce pressure on memory and planning. Visual reminders, calendars, written instructions and alarms may help, but only if they are kept simple. Too many alerts, lengthy forms or complicated apps can become another source of stress.

Communication is equally important. Short sentences, one topic at a time and time to process information are often more helpful than repeated explanations. It can be useful to ask, “What will you do first?” rather than “Do you understand?” This gives the person a chance to show what has been understood without feeling tested or judged.

Support with housing, money and daily decisions

Independent living is not an all-or-nothing goal. Some adults with FASD may thrive in their own home with regular check-ins. Others may need supported living, a family home, shared living arrangements or more intensive assistance. The right option depends on safety, available relationships, practical skills and how well support is maintained over time.

Financial vulnerability can be a particular concern. Difficulties with cause and effect, impulse control, abstract thinking or recognising risk can make someone more open to scams, online spending, pressure from others or agreements they do not understand. Clear safeguards are not a punishment or a removal of autonomy. They can be an essential form of protection.

Where possible, decisions about money should be made openly and respectfully, with support that matches the person’s capacity for each task. This might mean a weekly spending plan, help with bills, limits on online purchases or another trusted person attending financial appointments. The aim is to reduce harm while preserving choice wherever possible.

Employment and meaningful occupation

Work can provide purpose, routine, income and connection. It can also create high levels of stress when expectations are unclear, environments are noisy or fast-paced, and mistakes are treated as carelessness. A good fit is often more valuable than a prestigious role.

Adults with FASD may do well in roles that have clear routines, practical tasks, consistent supervision and a supportive manager. Written checklists, demonstrations, predictable shifts and one named person for questions can be more effective than broad instructions such as “use your initiative”. A calm environment and planned breaks can also help with sensory overload and emotional regulation.

Not every person will be ready for paid employment, or able to sustain it at every point in their life. Volunteering, training, creative activity, caring roles and community participation can be just as meaningful. Success should be measured by wellbeing, stability and a sense of belonging, not by whether someone meets a narrow idea of adult achievement.

Health, wellbeing and relationships

Adults with FASD can experience anxiety, low mood, sleep challenges, trauma and other health needs. They may have had repeated experiences of failure, exclusion or being blamed for needs they could not explain. A trauma-informed approach is vital. Asking “What happened to you?” and “What support would help?” is more compassionate and more useful than asking why a person has not simply tried harder.

Healthcare appointments can be challenging because of waiting rooms, unfamiliar language, multiple instructions and the need to remember information afterwards. Bringing a supporter, requesting clear written notes and arranging follow-up can make care more accessible. Professionals should avoid assuming that an adult has understood a diagnosis, treatment plan or consent process simply because they have nodded along.

Relationships also need thoughtful support. Some people may be trusting, eager for acceptance or unsure how to recognise unhealthy boundaries. Conversations about friendship, online safety, consent, coercion and personal space need to be direct, respectful and repeated over time. Vague warnings are rarely enough.

When families are carrying too much

Parents, grandparents, siblings, foster carers, adoptive parents, kinship carers and partners often continue providing substantial support well into adulthood. They may be coordinating appointments, responding to crises, managing finances and trying to protect a loved one from exploitation, all while worrying about what will happen in the future.

These concerns are understandable. Family supporters need information, peer connection and space to speak honestly without judgement. They also need professionals to recognise that family insight is valuable. The people who know an adult best can often identify early signs of overwhelm, changes in routine and strategies that genuinely work.

At the same time, adults with FASD deserve to be included in conversations about their lives in ways they can understand. Good support holds both truths together: family members may have vital knowledge, and the adult’s voice, preferences and rights must remain central.

Asking for the right support

It can help to describe needs in practical terms rather than relying only on a diagnostic label. For example, explain that a person needs information broken into steps, support to attend appointments, help to understand forms, predictable routines or safeguarding around money and relationships. This makes it easier for services, employers and community organisations to identify reasonable adjustments.

If an adult has not had an appropriate assessment, it may still be possible to seek advice about current needs and support routes. A diagnosis can be helpful, but a person should not be left without practical assistance simply because assessment pathways are complicated or delayed.

FASD Ireland offers living-experience-led information, peer support and training to help families and professionals understand the lifelong impact of FASD. Being part of a community that listens without judgement can replace isolation with shared understanding and practical hope.

A more manageable life is rarely created by one big intervention. It is built through people who understand, environments that reduce unnecessary pressure, and support that sees the whole person - their challenges, strengths, hopes and right to belong.

For more information...

Please contact FASD Hub Ireland on 065 670 3096. Open Monday to Friday 10am to 4pm. You can also register online to join our Peer Support Groups FASD Hub Ireland is a parent-led, peer-supportive, national telephone helpline provided by volunteers who have lived experience of Foetal Alcohol Spectrum Disorder.

FASD Behaviour Strategies That Reduce Stress

Wed, 05 Aug 2026 00:06:00 GMT

FASD Behaviour Strategies That Reduce Stress

A child who is shouting, refusing, running away, swearing or shutting down is often being described as ‘behaving badly’. For a person living with Foetal Alcohol Spectrum Disorder, these moments may instead show that their brain and body have reached capacity. FASD behaviour strategies work best when they begin with this understanding: behaviour is communication, not a measure of character, parenting or care.

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. It can affect memory, emotional regulation, impulse control, sensory processing, communication, sleep and the ability to understand consequences in the moment. A strategy that relies on remembering a rule, reading a social cue or calming independently may ask more than the person can manage at that time.

This is not about lowering expectations or excusing harm. It is about replacing blame with support, creating safety and teaching skills in a way the brain can access. You are not alone in finding this difficult, and small changes can reduce daily stress for the whole family.

Start with regulation, not correction

When someone is distressed, their thinking brain may be unavailable. Reasoning, questioning and consequences delivered in the heat of the moment can make things worse, even when they are intended to help. The immediate priority is regulation and safety.

Use fewer words and a calm, steady voice. Offer physical space where appropriate, reduce noise and demands, and avoid asking for explanations while the person is overwhelmed. Simple phrases can help: “You are safe”, “I am here”, “We can talk later”, or “First, let’s get some quiet.”

For some children and adults, co-regulation is essential. This means another calm person helps them return to a settled state through their voice, presence and predictable response. It is not a sign of immaturity or manipulation. It is support for a nervous system that may struggle to regulate without help.

After the incident, when everyone is calmer, curiosity is more useful than criticism. Consider what happened before the behaviour. Was the environment noisy? Was there a change in routine, an unclear instruction, hunger, tiredness, pain, embarrassment or a demand that felt impossible? Looking for the reason does not remove accountability. It helps you prevent the same difficulty happening again.

FASD behaviour strategies for everyday routines

Predictability can be deeply reassuring for people with FASD. Many find that transitions, unfamiliar places and last-minute changes are especially difficult because they require flexible thinking, working memory and emotional regulation all at once.

Make routines visible rather than relying on verbal reminders. A simple morning chart, a written after-school plan or pictures showing each step of a task can reduce pressure on memory. Keep instructions short and give one step at a time. Instead of saying, “Get ready for school, find your bag, put on your coat and hurry up,” try, “Shoes on first.” Once that is done, give the next instruction.

Preparation also matters. If an appointment, visitor or family event is coming up, explain what will happen, who will be there and how long it may last. A visual countdown can help. Where possible, offer a clear exit plan or quiet break. This is not avoidance. It is a reasonable adjustment that can make participation possible.

It may help to build regular opportunities for movement, food, water, rest and sensory breaks into the day. A person may appear oppositional when they are actually hungry, overloaded, exhausted or unable to process what is being asked. Needs that look small to others can become urgent very quickly.

Change the environment before asking for change

A useful question is: “What can we change around the person to help them succeed?” This shifts attention away from punishment and towards practical support.

Sensory needs vary . One person may need headphones, dimmer lighting or a quiet corner; another may need movement, deep-pressure input or a familiar object to hold. Some may find crowded shops, busy corridors, strong smells or scratchy clothing unbearable. Observe patterns without judgement and involve the person in identifying what helps where possible.

Time can also be difficult to understand. Phrases such as “later”, “in a minute” or “soon” may be confusing. Use specific, concrete language: “We are leaving after this programme ends,” or “You have five more minutes, then we will put the game away.” A timer can make an invisible demand easier to grasp.

Keep choices manageable. Too many options can lead to overwhelm, particularly when a person is tired or anxious. Offer two realistic choices, both of which you can support: “Would you like to put your shoes on in the hall or in your room?” This gives agency without creating an unmanageable decision.

Teach skills outside the difficult moment

Many people living with FASD know a rule but cannot use it consistently under pressure. This gap between knowing and doing is often misunderstood. Repetition, modelling and practice are usually more effective than assuming the lesson has been learned once.

Teach one skill at a time in a calm moment. If waiting is difficult, practise waiting for a very short time with support, then gradually build it up. If a child struggles to ask for a break, rehearse the words, sign or card they can use before they need it. Praise the effort clearly and immediately: “You showed me you needed space. That was a good way to ask for help.”

Natural, proportionate repair can be valuable after harm has occurred, but it should be achievable. A lengthy lecture, forced apology or removal of every comfort may create shame without building understanding. Depending on the person’s age and needs, repair might mean helping to tidy up, checking whether someone is okay, drawing a picture, or practising what to do differently next time.

Work together across home, education and services

Consistency is helpful, but it does not mean every setting must use identical rules. It means adults share an understanding of the person’s needs and use supportive approaches rather than interpreting difficulties as deliberate defiance.

In education, families, teachers and SNAs can work together to identify triggers, early signs of overload and adjustments that help. These may include clear visual instructions, movement breaks, reduced language, a calm place to reset, support with transitions and extra time to process information. Behaviour plans should describe what adults will do to prevent escalation, not only what happens after a crisis.

A strengths-based approach is equally important. Notice what the person enjoys, what makes them feel capable and who helps them feel safe. A child or adult who hears constant correction can begin to believe they are the problem. They are not. Their needs may be hidden, inconsistent and demanding, but they deserve understanding and appropriate support.

If behaviours have changed suddenly, are placing someone at risk, or are accompanied by significant distress, seek advice from relevant health or support professionals . Appropriate assessment can help build a fuller picture of neurodevelopmental needs, including possible co-occurring conditions, communication differences, sleep difficulties, trauma and sensory needs.

When a strategy does not work

No approach works every time. A strategy may be right but used when the person is already too overwhelmed, or a support that worked last year may no longer fit as demands change. Review what happened with compassion: what was the demand, what support was available, and what could be made easier next time?

Try to avoid interpreting setbacks as failure. Families and carers are often carrying an exhausting level of planning, advocacy and worry. It is reasonable to need support yourself. A community that listens without judgement can make the difference between coping alone and finding a way forward.

The most effective response is rarely the loudest or strictest one. It is the one that helps a person feel safe enough to borrow calm, practise a skill and try again tomorrow.

For more information...

FASD Criminal Justice Support That Makes a Difference

Wed, 29 Jul 2026 00:06:00 GMT

FASD Criminal Justice Support That Makes a Difference

A missed appointment, an apparently inconsistent account or a quick agreement to something not understood can have serious consequences in a justice setting. For a person living with Foetal Alcohol Spectrum Disorder, these may reflect a lifelong neurodevelopmental disability rather than a lack of care, honesty or willingness to cooperate. Effective FASD criminal justice support helps systems respond fairly, safely and with dignity.

FASD does not cause crime. People with FASD are individuals, not a risk category. However, the impacts of prenatal alcohol exposure can make a person more vulnerable to being misunderstood, exploited, drawn into unsafe situations or unable to manage the demands of legal processes. The right support is not about excusing harm. It is about making sure that expectations, communication and interventions are realistic and accessible.

Why justice processes can be particularly difficult

FASD can affect memory, attention, impulse control, planning, understanding of time, communication, sensory processing and the ability to learn from consequences. These differences are often hidden. A person may speak confidently, appear to understand, or agree with an authority figure, while not fully taking in what has been said or what will happen next.

In an interview, they may try to please the person asking questions. They may answer before they understand, fill gaps in memory, become overwhelmed by lengthy or repeated questioning, or give a different account on another day because recall is affected. None of this automatically means that a person has FASD, or that their evidence is unreliable. It does mean that professionals should slow down, check understanding and consider whether additional support is needed.

The pressure does not end after an interview. Court dates, conditions, appointments, paperwork and changes to routine can all be hard to manage. A person may understand a condition in the moment but struggle to remember it later, calculate when they must attend, organise travel or ask for help before a problem escalates.

Families and carers often see these difficulties long before a system does. They may have spent years supporting a young person or adult who says "yes" when confused, loses letters, becomes dysregulated in unfamiliar places or cannot explain what has happened under pressure. Their knowledge can be valuable, provided the person’s privacy, consent and rights are respected.

What good FASD criminal justice support looks like

Support works best when it begins early, rather than after a perceived failure to comply. A confirmed diagnosis can be helpful, but a person should not be left without reasonable, needs-led support simply because assessment is pending or unavailable. The practical question is: what will help this person understand, participate and stay safe?

Communication that can genuinely be understood

Plain language is essential. Professionals should use short sentences, cover one point at a time and avoid jargon, idioms or leading questions. Important information should be repeated calmly and given in writing in a clear, accessible format.

Checking understanding is different from asking, “Do you understand?” A person may say yes to avoid embarrassment or to move a stressful conversation along. It is more useful to ask them to explain the plan in their own words, or to show what they need to do next. If they cannot, the information needs to be explained again in another way.

Extra processing time matters. Silence should not be treated as defiance. Equally, a fast answer should not be assumed to show full understanding. Breaks, a quieter room, reduced sensory demands and the presence of an appropriate support person can make a meaningful difference.

Consistency and practical help

Justice systems can be fragmented, but the person’s support should feel joined up wherever possible. A named contact, a clear plan and predictable reminders may prevent small difficulties becoming breaches or crises. Phone reminders can help some people; others may need visual prompts, a written timetable, assistance with travel or a trusted person to go through information with them.

Conditions and plans should be specific and achievable. “Keep out of trouble” is too vague to guide anyone, particularly someone who finds abstract language difficult. A better approach sets out what is expected, where they need to be, who they can contact and what to do if they are becoming overwhelmed.

This may require flexibility. A person who repeatedly misses a morning appointment may not be refusing support. Difficulties with sleep, routines, executive functioning, anxiety or transport could be part of the picture. The response should still take accountability seriously, but it should first identify the barrier and adjust the plan where possible.

Advocacy that is informed, respectful and person-centred

A family member, advocate or support worker can help a person prepare for appointments, remember questions and communicate their needs. Their role should not be to speak over the person. It should help the person take part as fully as possible.

With consent, it may be helpful to share a short needs profile. This can explain what supports communication, what triggers distress, how memory difficulties present, and what helps the person regulate. It should focus on practical needs rather than labels alone. Not every person with FASD has the same profile, and assumptions can be as harmful as a lack of awareness.

For children and young people, adults around them need to avoid interpreting neurodevelopmental differences as deliberate bad behaviour. This includes recognising the effect of trauma, disrupted care, disability, mental health needs, substance use, poverty and unsafe relationships where they are present. FASD may be one part of a complex picture, not the whole explanation.

Steps families and carers can take

If someone you support is involved with Gardaí, legal services, probation, youth justice or a court process, begin by making a simple record of their day-to-day needs. Include communication preferences, memory and time difficulties, sensory needs, known triggers, calming strategies and the support they need to attend appointments.

Ask early whether communication adjustments, extra time or an appropriate support person can be considered. Encourage the person to seek legal advice promptly. If they are willing, help them prepare questions beforehand and write down the answers afterwards in straightforward language.

It can also help to create one calendar containing every appointment, deadline and contact number. Keep instructions brief and visible. Rather than asking, “Have you sorted that?”, try one step at a time: “The appointment is at 11am on Tuesday. Shall we look at how you will get there?”

Families should not have to carry this alone. The stress of justice involvement can be intense, particularly when a loved one is misunderstood or when past experiences of services have been difficult. Peer support can offer a space to talk with people who understand the lifelong realities of FASD without judgement.

What professionals can do differently

FASD-informed practice does not require a person to become an expert overnight. It starts with curiosity, humility and a willingness to adapt. Avoid reading missed appointments, eye contact, apparent agreement or emotional responses as proof of attitude. Consider whether cognitive, communication or sensory needs may be affecting participation.

Professionals should document adjustments that work, so the person does not have to explain their needs repeatedly. They should also use training and consultation to build confidence in recognising possible FASD and responding appropriately. FASD Ireland works to strengthen condition-specific understanding across services because fair access depends on more than goodwill.

There are limits to any single adjustment. Some situations will require specialist assessment, mental health support, disability services, safeguarding action or legal advice. Yet simple changes in language, pace and follow-through can reduce distress and improve a person’s ability to engage from the outset.

Fairness means support before failure

A justice process asks a great deal of anyone. For a person affected by FASD, it may demand skills that are significantly harder than they appear from the outside: remembering, sequencing, regulating emotions, resisting pressure and understanding consequences in the future.

FASD criminal justice support should therefore be proactive, individualised and grounded in rights. It should recognise strengths as well as needs, involve the person wherever possible, and work alongside families and trusted supporters rather than treating them as an obstacle. When systems make communication accessible and expectations achievable, they create a better chance of safety, participation and lasting change.

No family should have to choose between protecting a loved one’s dignity and asking for help. Naming unmet needs is not making excuses. It is often the first step towards a response that is more humane, more effective and more just.

For more information...

Please contact FASD Hub Ireland on 065 670 3096 Open Monday to Friday 10am to 4pm. FASD Hub Ireland is a parent-led, peer-supportive, national telephone helpline provided by volunteers who have living experience of Foetal Alcohol Spectrum Disorder.

FASD Benefits and Entitlements for Families

Wed, 22 Jul 2026 00:03:00 GMT

FASD Benefits and Entitlements for Families

A diagnosis of Foetal Alcohol Spectrum Disorder (FASD), or a strong concern about prenatal alcohol exposure, can leave families facing a demanding question: what practical help is available? FASD benefits and entitlements are not one single package, and the route can feel confusing when a child, young person or adult has needs across health, education, care and everyday life. You deserve clear information, respectful listening and support that recognises FASD as a lifelong neurodevelopmental disability.

The starting point is this: FASD does not automatically guarantee a payment or service. Decisions are usually based on the person’s functional needs, the level of care required, household circumstances and the evidence provided. However, a formal diagnosis is not the only evidence that matters. Reports which describe real daily needs can be just as important while a person is awaiting appropriate assessment.

Understanding FASD benefits and entitlements

FASD can affect memory, attention, communication, sensory processing, emotional regulation, sleep, learning, impulse control and the ability to manage daily tasks independently. These differences may be invisible to others, particularly where a person can appear articulate or capable for short periods. Families are often left carrying a high level of supervision, planning, co-regulation and advocacy that is not obvious on a form.

When applying for a benefit, support or educational provision, describe what happens on an ordinary difficult day, not the best day. Explain the prompts, repetition, supervision and recovery time needed. For example, a young person may be able to get dressed but cannot reliably sequence the task, judge the weather, remember medication or leave the house safely without support. That context helps decision-makers understand need beyond a diagnostic label.

Keep copies of assessment reports, letters from health professionals, school plans, records of appointments and a brief diary of care needs. It can also help to write down examples before completing a form, as the daily reality of caring is easy to minimise when you are used to simply getting through the day.

Domiciliary Care Allowance

Domiciliary Care Allowance may be relevant for a child under 16 who has a severe disability and requires substantially more care and attention than another child of the same age. The payment is not means tested, but it is assessed carefully against the child’s care needs.

For families affected by FASD, evidence may need to explain needs around safety awareness, sleep disruption, personal care, supervision in public, emotional regulation, communication, eating, routines, medication or frequent appointments. A report that only states “FASD” may not show the full picture. Ask professionals to describe the practical impact of the child’s neurodevelopmental differences where possible.

A refusal can be deeply discouraging, but it does not mean your child’s needs are not real. Read the decision letter closely, seek advice and consider whether further evidence or a review or appeal is appropriate. The process can depend on the information available at the time of the decision.

Carer’s Allowance, Carer’s Benefit and the Carer’s Support Grant

A parent, grandparent, foster carer, adoptive parent, kinship carer or other full-time carer may be able to explore carer supports. Carer’s Allowance is means tested, while Carer’s Benefit is linked to social insurance contributions. Both have eligibility conditions relating to the level of care provided, residence and employment or study arrangements.

The annual Carer’s Support Grant may also be available to eligible full-time carers. Rules and payment rates can change, so check the current criteria before relying on any estimate. If one carer does not qualify because of income or contribution conditions, it is still worth asking whether another support or household arrangement may be relevant.

Carers are often focused on the person they support and put off making an application. Yet financial pressure, reduced working hours and exhaustion are part of the reality for many families living with FASD. Seeking support is not asking for special treatment. It is recognising the additional care being provided.

Medical cards and urgent financial help

A medical card or GP visit card may help with healthcare costs, depending on income and circumstances. Some people may qualify through a discretionary assessment where ordinary income limits do not reflect significant medical costs. This is particularly worth exploring where there are regular appointments, prescriptions or other ongoing expenses.

Where a family is under immediate financial strain, supplementary welfare supports may be available through the local community welfare service. Exceptional Needs Payments can sometimes assist with essential once-off costs, though these are discretionary and depend on individual circumstances. Keep receipts, quotes and relevant letters if you are making this type of application.

Supports when a young person reaches adulthood

Turning 16 can change the benefits picture. Disability Allowance may be an option for a person aged 16 or over and who meets the medical and means-test conditions. It is an application in the young person’s own right, even where they need substantial help to understand forms, gather evidence or manage money.

This transition can be unsettling. A young adult with FASD may be legally an adult but still need support with planning, travel, appointments, budgeting, safety, relationships and communication. Their application should reflect those actual needs without assuming that age alone brings independence.

If the person is in education, training or beginning work, ask how earnings, study and living arrangements may affect a payment. The answer depends on the particular scheme and personal circumstances. It is better to get clarification before a change than to face an unexpected overpayment later.

Education and health supports are part of the picture

Financial payments matter, but they are only one part of FASD entitlements. Children and young people may also need appropriate assessment, therapeutic input and education support that responds to their individual profile.

For younger children, an Assessment of Need may be relevant. In education, support should be based on assessed Additional Needs rather than on a diagnosis alone. A student with FASD may benefit from predictable routines , reduced language, visual prompts, movement or sensory breaks, support with transitions, and teaching that allows for memory and processing differences.

Speak with the school about the evidence already available and the difficulties seen across the day. Teachers, Special Needs Assistants and other school staff can contribute valuable observations, especially where a child’s needs are more pronounced during unstructured times, transitions or after periods of stress. A diagnosis can strengthen understanding, but families should not be left waiting for a diagnosis before reasonable supports are considered.

Health and disability services can be fragmented, particularly for families seeking assessment or support beyond early childhood. Keep a clear record of referrals, waiting-list correspondence and reports. If you are told that a service cannot help, ask what alternative pathway, eligibility route or written explanation is available.

Making an application that reflects real life

Forms are rarely designed around the complexity of FASD. A calm, organised application can still tell the truth about a family’s hardest days. Before submitting, bring together four things:

current clinical, psychological, occupational therapy or other relevant reports;
school observations and plans that describe Additional Needs in practice;
examples of daily care, supervision, safety concerns and support with routines; and
details of costs, appointments or changed work arrangements where these are relevant.

Use plain, specific language. “Needs constant reminders” is useful, but “needs repeated verbal and visual prompts to complete each step of washing, dressing and preparing for school, and becomes distressed if the sequence changes” gives a fuller picture. Do not understate a person’s needs because you love them, respect their strengths or have become skilled at preventing crises.

It can be helpful to ask a trusted professional, advocate or another family member to read an application before it is sent. They may notice care tasks that have become so routine that you have not thought to include them. Peer support can be equally valuable: a community that listens without judgement can make an isolating process feel more manageable.

If a decision does not reflect the need

A negative decision is not a judgement on your family or on the reality of FASD. It may mean the criteria were not met, the evidence did not answer a particular question, or essential information was missing. Ask for the reasons in writing, note the deadline for a review or appeal, and seek advice promptly.

Where possible, address the specific gaps identified. A stronger application is not necessarily a longer one. It is one that clearly connects the person’s disability-related needs to the conditions of the scheme being considered.

The systems can be tiring, but your knowledge matters. You know the effort behind the routines, the supervision that keeps someone safe and the planning that makes participation possible. Holding on to that truth can help you ask for support with confidence and dignity.

For more information...

Alcohol Free Pregnancy Advice for Every Stage

Wed, 15 Jul 2026 00:03:00 GMT

Alcohol Free Pregnancy Advice for Every Stage

A positive pregnancy test can bring joy, shock, worry, or all three at once. If you are looking for alcohol-free pregnancy advice because you drank before you knew you were pregnant, please begin here: do not panic, and do not face the worry alone. Stop drinking alcohol now and speak with your GP, midwife or maternity care team, who can offer individual advice without judgement.

The clear public-health message is that the safest approach during pregnancy is not to drink alcohol. There is no known safe amount, safe type or safe time to drink alcohol when pregnant. This includes wine, beer, spirits, cocktails and drinks that may feel less significant because they are shared socially or only had occasionally.

Alcohol-free pregnancy advice starts with compassion

Choosing not to drink in pregnancy is about protecting development, not about blaming or shaming anyone. Pregnancy can be a vulnerable time, and alcohol may have been part of your routine, your way of relaxing, or part of important social and family occasions. Some people also find that pregnancy brings stress, loneliness, difficult memories or pressure from others. A simple instruction to stop can feel much harder in real life.

Alcohol passes from the pregnant person to the developing baby through the placenta. Prenatal alcohol exposure can affect development and may lead to Foetal Alcohol Spectrum Disorder , known as FASD. FASD is a lifelong neurodevelopmental disability. It can affect learning, memory, attention, communication, sensory processing, emotional regulation and day-to-day functioning. Every person with FASD is different, and needs may change across the lifespan.

This information is not intended to frighten you. It is intended to make space for clear, kind action. Not drinking from this point onwards is a positive step. You deserve support to make it manageable.

If you drank before knowing you were pregnant

Many pregnancies are not recognised immediately. It is common for someone to have had alcohol before a missed period or before taking a test. No one can look at one occasion, or even a particular amount, and predict an individual outcome. Worrying alone will not provide the reassurance or care you need.

Tell your GP, midwife or maternity team honestly about what you remember drinking and when. Their role is to support your health and your pregnancy, not to judge you. Sharing accurate information helps them decide whether any additional discussion, monitoring or support would be useful. Discuss Choline Supplements with your GP, midwife or maternity team as research shows that this can be helpful to the developing foetus when alcohol has been consumed.

Try not to let fear prevent you from attending appointments. Early and regular antenatal care matters. If you are feeling overwhelmed, anxious or ashamed, say so directly. Emotional support is part of pregnancy care too.

Making an alcohol-free plan that works for you

For some people, stopping alcohol is straightforward. For others, it takes planning, practical support and sometimes specialist help. A plan is not a test of willpower. It is a way to reduce pressure at the moments when drinking has usually felt automatic.

Start by noticing your own patterns. You may be most likely to drink after work, at weekends, when meeting friends, during celebrations or when you are tired. Then decide what will replace that routine. A cold 0.0% drink in a familiar glass, a favourite fizzy drink, tea, a short walk, an early night or a prepared response to an offer of alcohol can all help. The right choice depends on what feels realistic in your life.

Where alcohol-free alternatives are concerned, check the label carefully. Some drinks marketed as alcohol-free may contain a small amount of alcohol, while 0.0% options do not. If an alcohol-free drink makes you miss alcohol more, choose something entirely different instead. There is no need to make your pregnancy look like your old drinking routine.

It can help to take four practical steps:

Tell one or two trusted people that you are not drinking, so they can back you up when plans feel difficult.
Keep appealing alcohol-free options at home, rather than relying on whatever is available when you are tired or stressed.
Prepare a simple answer, such as, I am not drinking at the moment, if you do not want to discuss your pregnancy.
Arrange support early if cravings, stress or social pressure are making it difficult to stop.

You do not owe anyone a detailed explanation. A supportive partner, friend or family member will respect your boundary and avoid making alcohol the centre of a gathering.

When stopping feels difficult

If you are finding it hard to stop drinking, speak to a GP, midwife or maternity care provider as soon as possible. Be honest about how often you drink, how much you drink and whether you have experienced shakes, sweating, anxiety, nausea or other symptoms when you have tried not to drink. This is health information, not a confession.

For people who drink heavily or regularly, suddenly stopping can sometimes need medical support. Your care team can help you make a safe plan and connect you with appropriate alcohol and mental-health services. Do not try to carry this alone because you are worried about being judged.

If alcohol has become a way of coping with trauma, depression, anxiety, relationship difficulties or financial stress, those underlying pressures deserve care too. Support that only says do not drink, without asking what you are coping with, may not be enough.

Caring for yourself beyond the drink

An alcohol-free pregnancy is supported by more than saying no to alcohol. Regular food, rest, hydration, gentle movement where appropriate and keeping antenatal appointments can all make a difference to how you feel. If nausea or exhaustion is making every day difficult, let your maternity team know. You should not have to manage significant symptoms in silence.

It is also worth thinking about the social side of pregnancy. You may need to change where you meet friends, leave events earlier, ask someone else to drive, or choose daytime plans for a while. These are not signs that you are missing out. They are practical ways of protecting your wellbeing during a major physical and emotional change.

Partners, relatives and friends have a role here too. The most helpful support is often ordinary and consistent: keeping alcohol out of the home if asked, choosing alcohol-free plans, listening without interrogation and not treating a pregnant person as difficult for setting a limit.

Alcohol-free pregnancy advice for families and professionals

Conversations about alcohol in pregnancy need to be clear, routine and free from stigma. Families may avoid asking for support if they expect blame. Professionals can make a meaningful difference by using respectful language, listening carefully and offering practical next steps rather than assumptions.

For families living with FASD, prevention messages can be especially personal. They may hold grief, frustration or years of experience trying to secure appropriate assessment and understanding for a child, young person or adult. Their knowledge matters. FASD is not a parenting failure, and people with FASD deserve support that recognises both their strengths and their additional needs.

Prevention and compassion belong together. Clear advice about avoiding alcohol in pregnancy protects future children. Non-judgemental support helps people seek care early, speak honestly and stay connected to services.

If today is the day you decide to stop drinking, let it be a starting point rather than a source of fear. One conversation with a trusted healthcare professional can make the next step feel more possible. You are not alone, and asking for support is a caring act for you and your pregnancy.

For more information...

FASD Workplace Adjustments for Employers

Wed, 08 Jul 2026 00:06:00 GMT

FASD Workplace Adjustments for Employers

A missed deadline, an apparently forgotten conversation or a sudden shutdown in a noisy office can be misread as poor attitude. For an adult with Foetal Alcohol Spectrum Disorder (FASD), these experiences may reflect a lifelong neurodevelopmental disability, not a lack of care or ability. Thoughtful FASD workplace adjustments employers put in place can turn a stressful role into a job where someone can contribute with confidence and dignity.

FASD affects people differently. Prenatal alcohol exposure can affect memory, executive functioning, processing speed, communication, sensory processing, emotional regulation, sleep and energy. A person may be articulate, warm and highly capable in one part of a role, while finding another part unexpectedly difficult. This uneven profile is one reason assumptions can cause harm.

The aim is not to lower expectations or make someone disclose personal information to everyone at work. It is to remove avoidable barriers, agree clear support and create conditions in which the person can do their job well. You are not looking for a one-size-fits-all solution. You are listening to the person who knows their day-to-day experience best.

Understanding FASD workplace adjustments employers can make

Employers have a duty under the Equality Acts 1998-2015 to make reasonable adjustments for a disabled employee or job applicant. In Northern Ireland, the Disability Discrimination Act 1995 applies. The legal test and available support can differ either side of the border, so organisations should take appropriate HR or legal advice where needed.

A diagnosis can be helpful, but it should not become a gatekeeping exercise. What matters in practice is whether a person has a long-term condition that has a substantial effect on everyday activities, and what barriers the workplace creates. Some adults with FASD may not have had an appropriate assessment , may be awaiting one, or may prefer not to share a diagnosis. An employer can still respond constructively to a request for help.

‘Reasonable’ depends on the size and resources of the employer, the role, the likely effectiveness of the change, and its impact on colleagues and the service. That does not mean doing nothing until a problem becomes a disciplinary matter. Early, practical conversations are usually kinder and more effective than managing a pattern of difficulties after trust has broken down.

Start with a private, practical conversation

A good adjustment process begins with curiosity rather than judgement. Ask what part of the working day takes the most energy, what makes tasks easier to complete, and how instructions are best received. Avoid asking a person to explain or prove every aspect of FASD. Focus on the job and the barriers within it.

Someone may say they can remember a task when it is written down but not when it is mentioned in passing. They may need extra processing time before answering a question, or find a busy shared workspace overwhelming. Another person may be confident with regular routine but struggle when priorities change without warning. These are useful pieces of workplace information, not character flaws.

Agree the adjustments in writing, using clear and respectful language. Set a date to review them together. A change that works brilliantly for one person may not work for another, and needs can shift during periods of stress, illness, changes at home or changes in the workplace.

Make work clearer, not harder

Many helpful adjustments are straightforward and cost little. They often improve communication for the whole team, not only the employee with FASD.

Written follow-up is particularly valuable. After a meeting, send a short message confirming the task, the first step, the deadline and who to ask for help. Keep language plain and avoid giving several unrelated instructions at once. A shared checklist, calendar reminders or a visual task board can reduce the pressure of holding information in working memory.

Predictability also matters. Where possible, give advance notice of rota changes, meetings, altered priorities or new procedures. Break a large task into smaller stages and check understanding without sounding like a test. Asking, ‘What are your next two steps?’ is often more useful than, ‘Do you understand?’

A named manager, workplace buddy or regular check-in can provide an anchor point. This should be supportive, not surveillance. The purpose is to spot barriers early, clarify expectations and recognise what is going well.

Consider sensory needs, time and energy

Some people with FASD experience sensory overload from noise, lighting, smells, interruptions or crowded spaces. Others need more time to process information, transition between tasks or recover after demanding social interaction. These needs can be invisible, yet they can have a real effect on attendance, concentration and wellbeing.

Practical options may include a quieter desk or room, noise-reducing headphones where safe, permission to take short planned breaks, flexible start times, or some home working if the role allows it. A person working in retail, hospitality, healthcare or a public-facing service may not be able to work remotely. In those settings, a predictable shift pattern, a quieter break space, written procedures and a clear point of contact may be more realistic.

There can be trade-offs. A quiet workspace may reduce distraction but increase isolation. Flexible hours may help with fatigue but make team handovers more complicated. Discuss these openly and test arrangements rather than assuming an adjustment must be permanent from day one.

Support communication and relationships at work

FASD can affect how a person interprets tone, reads social cues or responds when they feel overwhelmed. This does not mean they cannot work with others. It means direct, calm communication is likely to be more helpful than hints, sarcasm or public criticism.

Give feedback privately, promptly and in specific terms. Explain what happened, what needs to change and what support will help next time. If an employee becomes distressed, allow time and space to regulate before expecting a detailed conversation. Escalating pressure in the moment can make it harder for them to process information or communicate clearly.

Confidentiality is essential. The employee should decide what, if anything, colleagues are told about their diagnosis. With consent, a manager might explain that instructions need to be written down or that the person requires advance notice of changes. There is rarely a need to share private health information.

Review performance fairly

Performance processes should distinguish between unwillingness and an unmet support need. If the same error happens repeatedly, ask whether the system relies on memory, rapid verbal instructions or unclear priorities. Changing the method may be more effective than repeating a warning.

Keep expectations clear and proportionate. Adjustments are not a promise that there will never be a mistake, nor do they remove the essential requirements of a role. They are a way to give a person a fair opportunity to meet those requirements. If a particular task remains difficult after support has been tried, consider whether duties can be redistributed, simplified or approached differently.

Managers need enough FASD-informed understanding to avoid harmful labels such as ‘lazy’, ‘careless’ or ‘attention-seeking’. Training should explain that FASD is a lifelong neurodevelopmental disability and that behaviour is communication. It should also make clear that adults affected by prenatal alcohol exposure deserve the same respect, privacy and opportunity as any other employee.

When an employee is not ready to disclose

Not everyone feels safe disclosing FASD. Stigma, previous negative experiences and fear of being treated differently are understandable concerns. Employers can make disclosure easier by speaking openly about adjustments as ordinary workplace practice, offering confidential routes to HR or occupational health, and responding well to smaller requests.

An employee does not have to use diagnostic language to ask for written instructions, a quieter place to work or a regular check-in. A workplace culture that honours these requests without suspicion benefits everyone. It also makes it more likely that people will seek support before difficulties reach crisis point.

Work can provide routine, purpose, financial independence and connection. With the right understanding, an adult with FASD can bring skills, commitment and a valuable perspective to a team. The most meaningful adjustment is often a manager who listens without judgement, believes the person’s experience and is willing to make practical changes together.

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FASD and Sleep Problems: A Guide for Families

Wed, 01 Jul 2026 00:06:00 GMT

FASD and Sleep Problems: A Guide for Families

A child who is wide awake at 2am, distressed by a tiny change to their bedtime routine, or unable to settle without a parent nearby is not being difficult. FASD and sleep problems can be closely connected, and repeated broken nights can affect the whole household's wellbeing. For people living with FASD, sleep difficulties are often part of the lifelong neurodevelopmental disability, not a failure of parenting or a lack of effort.

Sleep can become one more area where families feel judged or unsupported. You are not alone. Understanding what may be driving the difficulty can make it easier to seek appropriate help and make small, realistic changes that fit your family.

Why FASD and sleep problems can be so challenging

People with FASD may experience differences in brain development linked to prenatal alcohol exposure. These differences can affect emotional regulation, sensory processing, memory, communication and the ability to move from one task or state to another. Bedtime asks a great deal of the brain: to notice tiredness, stop an enjoyable activity, manage uncertainty, tolerate sensory input and settle the body. That can be hard when executive functioning and regulation are already under pressure.

Sleep difficulties do not look the same for everyone. One person may take a very long time to fall asleep, while another wakes repeatedly, rises extremely early or has a reversed sleep pattern. Nightmares, anxiety at bedtime, restless sleep and needing a familiar adult close by can also be part of the picture.

Daytime demands matter too. A busy day in school, a noisy social event, a change in transport, an appointment or a disagreement can leave a child or young person feeling overwhelmed long after they appear calm. By bedtime, their capacity may simply be used up. For adults with FASD, work pressures, parenting responsibilities, housing insecurity or managing services can have a similar effect.

It is also worth remembering that sleep problems can have more than one cause. Stress and anxiety, pain, constipation, allergies, medication effects, breathing difficulties and other health needs may all affect sleep. FASD should guide understanding and support, but it should not prevent a proper assessment of new or worsening symptoms.

Start with patterns, not assumptions

When everyone is exhausted, it is tempting to try a new solution every night. A short sleep record can provide a clearer starting point. For one or two weeks, note roughly when the person begins their wind-down, gets into bed, falls asleep and wakes. Include night waking, naps, food or drinks close to bedtime, medication timings, illness, big changes and anything that seemed to help.

The aim is not perfect data. It is to spot patterns. Perhaps settling is harder after certain activities, wake-ups happen at a similar time, or a late afternoon nap leads to a much later bedtime. A record can also help a GP or other health professional understand the scale of the problem without asking you to recall every difficult night from memory.

Try to describe what you see rather than labelling it. “He gets out of bed six times after the lights are lowered” or “she wakes crying and disorientated at 3am” gives more useful information than “they refuse to sleep”. Behaviour is communication, particularly when a person has difficulty explaining discomfort, fear or overload.

Make bedtime predictable and low demand

A consistent routine can help, but consistency does not mean rigidity or a picture-perfect evening. For some families, the most workable routine is a short sequence repeated in the same order: wash, comfortable clothes, toilet, quiet activity, bed. For another person, a longer period of calm sensory regulation is needed before they can begin this sequence.

Keep instructions brief and concrete. Instead of repeatedly saying “get ready for bed”, offer one step at a time or use a simple visual plan. A timer, a familiar song or a warning that there are ten minutes and then five minutes left can make transitions less abrupt. If visual supports feel helpful, use pictures, words or objects that make sense to the individual, rather than assuming one format suits everyone.

The sleep environment may need as much attention as the routine. Some people settle better with a dim light, a weighted blanket only where it is safe and comfortable for them, a familiar blanket, white noise or a cool room. Others find sound, labels in clothes, certain fabrics or darkness distressing. Notice their sensory preferences and adapt gently. What calms one person may keep another alert.

Screens can complicate sleep for many people, but an immediate ban may create more distress than it solves. If a screen is currently central to winding down, a gradual change may be more realistic: reducing stimulating content, using a familiar calming audio option, or moving the device away only after the person is settled. The best plan is one that can be sustained on a difficult Tuesday evening, not just for a few days.

Respond to night waking with connection and calm

A child or young person who wakes distressed may need reassurance before they can return to sleep. Keep your response as quiet, boring and predictable as possible: low light, few words and the same brief reassurance each time. This is not about withholding comfort. It is about helping the nervous system learn that night-time is safe and uneventful.

If they leave their room, consider what is making their room hard to return to. Are they frightened, too hot, hungry, in pain, confused after a nightmare or seeking co-regulation from a trusted adult? A planned response can reduce conflict. This might mean sitting nearby for a few minutes, offering a drink of water, checking a visual night-time card, then returning to the agreed sleep space.

Some families need to prioritise sleep over an ideal arrangement for a period of time. Co-sleeping, sleeping nearby or using a mattress in a parent's room may be the safest way a family gets through a crisis, illness or major transition. There are practical and safety considerations, particularly for babies and younger children, so seek health advice where needed. There is no shame in choosing the option that protects wellbeing while you work towards a longer-term plan.

Support the day as well as the night

Better sleep rarely comes from bedtime changes alone. Regular meals, hydration, movement that the person enjoys, daylight exposure and opportunities to decompress can all support a more settled rhythm. This does not require a packed activity schedule. For someone who is easily overwhelmed, a quiet walk, time outdoors, music or a predictable after-school rest may be more regulating than organised exercise.

Consider the demands placed on the person during the day. Students with FASD may need adjustments from teachers and SNAs, including clearer transitions, reduced sensory overload, movement breaks and recovery time after challenging tasks. A day that is more manageable can lead to an evening with fewer meltdowns and less hypervigilance.

For teenagers and adults, involve them as much as possible in identifying what helps. They may know that a particular drink, late-night conversation, noise from neighbours or worry about the next day is keeping them awake. Respectful collaboration builds skills and avoids turning sleep into another area where they feel controlled or blamed.

When to ask for professional support

Speak with a GP or relevant health professional when sleep difficulties are persistent, significantly affecting daily life, or suddenly changing. Bring the sleep record and explain the impact on the person and family. Ask for the concern to be considered in the context of FASD and any other diagnoses, medication or health needs.

Seek timely medical advice if there is loud snoring, pauses or gasping in breathing, extreme daytime sleepiness, frequent pain, seizures, sleepwalking that creates a safety risk, or a serious deterioration in mental health. These signs need assessment rather than a bedtime chart alone.

Medication, including melatonin, is not a simple answer and should only be considered with an appropriate prescriber who understands the individual's health history. It may help some people in specific circumstances, but it does not replace investigating discomfort, anxiety, breathing problems or environmental factors. Families deserve clear information about benefits, possible side effects and review arrangements.

You may also find it helpful to share the reality of sleep loss with people you trust. A grandparent taking over early-morning care, a friend bringing a meal, or a family member sitting with a child while you rest can make a meaningful difference. FASD Ireland recognises that peer support matters because a community that listens without judgement can ease the isolation of long nights.

There may not be one quick fix for FASD and sleep problems. Progress may look like settling twenty minutes sooner, one less wake-up, or a calmer response when sleep does not come. Those changes count. Begin with compassion for the person who cannot sleep and for the person trying to support them - both deserve rest, understanding and practical help.

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Understanding FASD Sensory Processing Difficulties

Wed, 24 Jun 2026 00:06:00 GMT

Understanding FASD Sensory Processing Difficulties

A child who covers their ears in a busy supermarket, refuses a familiar jumper, crashes into furniture or seems unable to notice they are hungry is not necessarily being difficult. FASD sensory processing difficulties can make ordinary sounds, touch, movement, smells and body sensations feel overwhelming, confusing or barely noticeable. For a person living with FASD, the environment may demand far more energy than others can see.

Foetal Alcohol Spectrum Disorder is a lifelong neurodevelopmental disability caused by prenatal alcohol exposure. Every person with FASD is different, and sensory processing differences are only one part of a much wider profile that can include differences with memory, attention, executive functioning, communication, sleep and emotional regulation. Understanding sensory needs can nevertheless change daily life. It moves the question from ‘Why will they not cope?’ to ‘What is their nervous system telling us?’

What sensory processing means in FASD

Sensory processing is the way the brain receives, organises and responds to information from the senses. This includes sight, sound, smell, taste and touch, as well as balance and movement, awareness of where the body is in space, and internal signals such as thirst, pain, temperature, tiredness or needing the toilet.

A person may be highly sensitive to some sensations and under-responsive to others. They might hear the hum of lights or the scrape of chairs as painfully loud, yet seek strong movement, deep pressure or crunchy food. Their responses can also change with stress, illness, hunger, tiredness and the demands of the day. What looks manageable at home may become impossible in a noisy classroom, a crowded shop or after an unexpected change.

This is not a matter of poor parenting, a lack of discipline or a child choosing to cause disruption. Sensory overload can place the brain into a state of alarm. At that point, reasoning, explaining consequences or insisting that someone ‘push through’ may increase distress rather than build coping skills.

How FASD sensory processing difficulties can look

Sensory needs do not always announce themselves clearly. Some children and adults can describe them, while others may show their discomfort through behaviour, withdrawal, shutdown, agitation or apparent refusal. A person may not connect a headache, a sudden outburst or a need to leave with the noise, lights, crowding or uncertainty that came before it.

Common patterns may include:

distress around loud, layered or unpredictable sounds, such as hand dryers, alarms, assemblies or several people talking at once;
discomfort with clothing seams, labels, hair brushing, particular fabrics, food textures or unexpected touch;
seeking movement by rocking, pacing, spinning, jumping or leaning heavily into people and furniture;
difficulty judging force, personal space, balance or body position, which can lead to bumping, falling or rough-looking play;
limited awareness of hunger, thirst, pain, toileting needs, heat, cold or fatigue;
becoming overwhelmed by visual clutter, bright lighting, strong smells or busy public spaces.

These experiences can be mistaken for defiance, hyperactivity, anxiety, aggression, fussy eating or attention-seeking. Sometimes those labels lead to support that focuses only on stopping the behaviour, rather than reducing the demand that is causing it. The same action can have different meanings. Pacing may be a way to regulate. Refusing a meal may be about texture or smell. Leaving a classroom may be a necessary response to sensory overload.

Start with curiosity, not correction

Patterns are more useful than isolated incidents. Keep brief notes for a couple of weeks: what happened before the difficulty, the time of day, the setting, who was present, what sensory demands were involved and what helped recovery. This can reveal that meltdowns happen after lunch because the dining hall is loud, or that bedtime is harder after a busy day with little chance to decompress.

It is helpful to distinguish a meltdown from a tantrum. A meltdown is a loss of control when the nervous system is overwhelmed. The person needs safety, less language, reduced sensory input and time to recover. During a shutdown, they may go quiet, appear frozen, stop responding or withdraw. Neither response is best met with punishment or demands for an immediate explanation.

Use simple, respectful language when the person is calm. You might say, ‘Your body looked like it had had enough noise’, or ‘Let us work out what makes the supermarket easier.’ This supports self-understanding without shame. It also gives older children and adults language they can use to ask for adjustments.

Make daily environments more manageable

There is no single sensory plan for everybody with FASD. The aim is not to remove every challenge, but to make demands predictable and manageable while building a trusted set of coping tools. Small changes, used consistently, often matter more than elaborate programmes.

At home, a quieter space with lower lighting, familiar comfort items and fewer spoken instructions can provide a place to reset. Some people benefit from headphones, a cap, a weighted item or opportunities for regular movement. These tools should be introduced with consent and observed carefully. What feels calming for one person can feel restrictive or unpleasant for another.

Transitions deserve particular attention. Give notice before leaving the house, changing activity or entering a demanding place. A visual plan, a short checklist or a familiar phrase can reduce uncertainty. Where possible, schedule busy errands at quieter times, allow extra travel time and agree a simple exit plan. Knowing they can step outside for a few minutes may make it possible to stay longer.

Food, hydration, sleep and movement affect sensory tolerance. Regular snacks and drinks can help where internal body signals are not reliable. This is practical support, not indulgence. A child who cannot recognise that they are hungry may become distressed long before they can explain why.

Supporting sensory needs in school and services

A person may hold themselves together through a school day and unravel at home. This does not mean they were fine at school or that home is the problem. It may mean home is the place where they finally feel safe enough to release the strain of coping.

Schools and services can make meaningful adjustments without isolating a pupil or lowering expectations. A quieter workspace, clear visual instructions, access to movement breaks, advance warning of alarms or timetable changes, and permission to use discreet sensory aids can reduce overload. Instructions should be brief, concrete and given one step at a time. It helps to check understanding without putting the person on the spot.

Consistency between home and school is valuable, but identical strategies are not always realistic. A child may need a different approach in a large classroom than at home. The key is shared understanding: behaviour communicates need, regulation comes before learning, and an adjustment is not an unfair advantage.

For adults with FASD, sensory needs can affect employment, appointments, shopping, transport and independent living. Employers and professionals can help by offering written information alongside verbal instructions, quieter meeting spaces, predictable routines, extra processing time and clear points of contact. Asking ‘What would make this easier to manage?’ is often more helpful than assuming what support is needed.

When to seek further support

Sensory processing differences may sit alongside other health, developmental, emotional or practical needs. If sensory concerns are affecting safety, eating, sleep, education, relationships or participation in everyday life, discuss them with the person’s GP or relevant healthcare professional. An appropriate assessment considers the whole person, their FASD profile, physical health, communication needs, mental health and environment.

An occupational therapist may be able to assess functional sensory needs and suggest individual strategies. Support is most useful when recommendations work in real life and are shared with the people who provide day-to-day care. A lengthy list of equipment is not a solution if it adds cost, complexity or pressure without helping the person feel safer.

Families should not have to work this out alone. FASD Ireland offers lived-experience-led information, peer connection and training for families and professionals who want a clearer understanding of FASD and practical support.

A sensory need is not a flaw to be corrected. When a child, young person or adult is believed, given time and supported to understand their own body, they have a better chance to participate in life on terms that respect their dignity. Start with one difficult moment, one small adjustment and one compassionate question: what would help right now?

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Supporting FASD in School: What Helps Most

Wed, 17 Jun 2026 00:07:00 GMT

Supporting FASD in School: What Helps Most

A student who cannot begin a familiar task, forgets an instruction given moments ago, or reacts strongly to a noisy corridor may be seen as unwilling or disruptive. For a child with Foetal Alcohol Spectrum Disorder (FASD), these may be signs that their brain is overloaded. Supporting FASD in school starts when adults move away from asking, “Why will they not?” and begin asking, “What is getting in the way?”

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. Every person is different, and needs can vary from day to day, lesson to lesson and environment to environment. A child may speak confidently yet struggle with memory, planning, sensory processing, emotional regulation, social understanding or the concept of time. These differences are often hidden, which can leave students misunderstood and families feeling that they must repeatedly explain what others cannot see.

Supporting FASD in school begins with understanding

FASD is not caused by poor parenting, a lack of effort or a child choosing to misbehave. It affects brain development, and behaviour is communication. A student may know a rule but be unable to apply it in the busy, fast-moving moment when it matters. They may understand a topic when it is explained one-to-one, then appear to have forgotten it the following day. They may need much longer than peers to process language, organise belongings or recover after a disappointment.

This is why consistency matters so much. School can be a place of safety, belonging and achievement when expectations are realistic and adults share an understanding of the student’s needs. It can also become exhausting when a child is corrected all day for difficulties they cannot simply will away.

A strengths-based approach helps. Notice what the student enjoys, where they feel capable and which adults help them settle. Some children are creative, caring, practical, energetic or deeply interested in a particular subject. Strengths are not a way of overlooking support needs. They are a foundation for connection, confidence and learning.

Make the day predictable and manageable

Many students living with FASD benefit from a calm, predictable rhythm. This does not mean every day must be identical. It means changes are explained early, routines are visible and support is available before anxiety rises.

A visual timetable, a simple now-and-next prompt, and clear preparation for school trips, visitors or timetable changes can reduce uncertainty. Give one instruction at a time, using plain language. Rather than saying, “Get yourself organised for Irish”, try, “Take out your blue copybook.” Once that is done, offer the next step.

Check understanding without putting the student on the spot. Asking, “What are you going to do first?” is often more useful than asking, “Do you understand?” A child who wants to please may say yes even when the instruction has not been processed.

Tasks should be broken into small, achievable parts. A full page of writing may feel impossible, while three sentences with adult support may allow a student to show what they know. This is not lowering expectations. It is removing barriers so that expectations can be approached fairly.

Transitions deserve particular attention. Moving from playground to classroom, changing teachers, packing up, or starting a new activity can be demanding. A quiet warning, a familiar adult nearby, and extra time can make the difference between a settled transition and distress that is later mistaken for defiance.

Create a sensory and emotional safety net

School environments can be noisy, bright, crowded and unpredictable. For students with sensory processing differences, the scrape of chairs, a packed assembly or the feel of a school jumper can take up so much energy that little is left for learning.

A sensory plan should be individual. It might include a quieter place to work, access to ear defenders where appropriate, movement breaks, a seat away from high-traffic areas, or permission to use a calm space before becoming overwhelmed. These supports work best when they are normalised, not treated as a punishment or a reward that can be removed.

Emotional regulation is also a brain-based need. When a student is distressed, reasoning, consequences and repeated questions may add to the pressure. Start with co-regulation: a calm voice, few words, physical space, familiar routines and time to recover. The conversation about what happened can come later, when the child is regulated enough to take it in.

It helps to agree a simple plan in advance. The student may have a card, signal or agreed phrase to show that they need a break. Staff should know where they can go, who will support them and how they will return to learning without shame.

Respond to behaviour with curiosity, not blame

A behaviour policy still matters, but it must be applied with equity and an understanding of disability. A consequence that relies on remembering a rule, sitting still for a long period, explaining feelings under pressure, or missing a regulating activity may not teach the intended lesson. It may instead increase stress and repeat the cycle.

Look for patterns. Is the difficulty happening at a particular time of day, after unstructured play, during lengthy verbal teaching, or when work feels too hard? Is hunger, tiredness, sensory overload, a change at home or an unclear instruction playing a part? The aim is not to excuse harm or remove boundaries. It is to find supports that prevent the behaviour and help the student repair relationships when things go wrong.

Use concrete, immediate feedback. Praise the specific action: “You came back to class after your break and started the first question.” Avoid expecting a child to learn from a delayed sanction or a broad instruction such as “make better choices”. They may need adults to name the choice, practise it and prompt it repeatedly in the setting where it is needed.

Work in partnership with families

Parents, foster carers, adoptive parents, kinship carers and grandparents often know what helps their child regulate, communicate and recover. They may also have had difficult experiences of being judged or not believed. A respectful partnership begins by listening.

Keep communication brief, factual and balanced. Families need to hear about successes as well as challenges. Instead of a message that says a child “had a bad day”, describe what happened, what support was tried and what helped. This gives families useful information and helps school staff build a clearer picture over time.

It is reasonable for schools to ask families what language the child understands, which warning signs suggest overload and what a successful morning or bedtime routine looks like. Equally, families should not be expected to carry the whole responsibility for educating staff about FASD. Schools can seek condition-specific training and ensure that knowledge is shared across the team, including substitute teachers, special needs assistants and lunchtime staff.

Plan support around the whole school day

A student’s needs do not begin at the classroom door and end with the final bell. Breaks, the school bus, homework, assemblies and after-school activities can be the hardest parts of the day. Consider whether the child needs supported play, a quieter lunch option, help with organising their bag, or homework that is realistic for their level of fatigue and executive functioning.

For some students, a reduced or adapted workload is appropriate. For others, assistive technology, oral responses, practical demonstrations or additional processing time may better show their learning. It depends on the child, the task and the support already in place. The key is to assess need rather than assume that a bright verbal presentation means a student can manage independently.

Transitions between classes, schools and stages of education need careful planning too. Visit new settings in advance, provide photos or maps where helpful, identify a trusted adult and share a concise support profile with relevant staff. A good handover protects hard-won progress.

When assessment and wider support are needed

FASD can co-exist with other developmental, learning, mental health or physical health needs. Some children have a diagnosis; others are awaiting appropriate assessment or have needs that are not yet fully understood. Support should not be withheld while a family waits for answers.

Schools can document observed strengths, barriers and effective strategies, then work with parents and relevant professionals to plan next steps. Clear evidence of what a student needs in everyday school life can be valuable when seeking educational, health or disability supports . It also prevents the child being defined only by incidents rather than understood as a whole person.

FASD Ireland recognises how isolating these conversations can be for families. No parent or carer should have to persuade others that a child’s hidden needs are real, and no educator should be left without guidance when they want to help.

The most powerful support is often not complicated. It is a steady adult who notices early signs of overload, makes the next step clear, protects dignity and begins again after a difficult moment. For a student living with FASD, that kind of school can change not only how learning feels, but how they come to see themselves.

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FASD Training for Teachers and SNAs in Irish Schools

Wed, 10 Jun 2026 00:06:00 GMT

FASD Training for Teachers and SNAs in Irish Schools

A student may understand a question in the moment, then be unable to recall the instruction five minutes later. They may appear confident verbally but struggle to put ideas on paper, manage transitions or judge risk in the playground. Without FASD training for teachers, these differences can be misread as defiance, carelessness or a lack of effort. For a child living with Foetal Alcohol Spectrum Disorder, that misunderstanding can shape their whole experience of school.

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. It affects people in different ways and is often described as a hidden disability because many of the challenges are not immediately visible. The right response at school is not lower expectations or labels. It is informed, consistent support that recognises a student's brain-based needs and protects their dignity.

Why FASD awareness belongs in every school

Teachers and SNAs already support students with a wide range of learning, sensory, communication and emotional needs. FASD-specific understanding matters because the pattern of need can be complex, uneven and easily overlooked. A student may be able to complete a task one day and not the next. They may repeat a rule accurately but struggle to apply it in a busy, real-life situation. They may want friends yet misread social cues, become overwhelmed by noise or react strongly when plans change.

These are not signs that a child or young adult is choosing to be difficult . They may reflect differences in executive functioning, memory, attention, emotional regulation, sensory processing, language, motor skills or adaptive functioning. Stress, tiredness, hunger, a substitute teacher or a crowded corridor can make these difficulties more pronounced.

When school staff understand this, the conversation changes. Instead of asking, "Why won't they do this?", staff can ask, "What is getting in the way, and what support will help?" That small shift can reduce shame for students and families while giving teachers and SNAs a more useful starting point.

What FASD training for teachers should cover

Useful training should go beyond a brief definition or awareness presentation. Teachers and SNAs need a clear picture of how FASD may present in a classroom, what appropriate support looks like and how to work respectfully with families. It should also be clear that not every student living with FASD has the same profile, and that a diagnosis is not required before helpful adjustments can begin.

Understanding the learning profile

Training should explain the difference between knowing and doing. A child or young adult may know a school rule, for example, but struggle to remember it when excited, anxious or under pressure. They may need a skill taught repeatedly, in the setting where it is required, rather than being expected to generalise it independently.

It is also helpful to understand that chronological age and functional or adaptive age may not always match. A student who appears mature in conversation may need support with organisation, time, money, personal safety or managing homework. Treating this as a gap in effort can cause harm. Seeing it as a support need allows teachers and SNAs to plan more realistically.

Practical classroom approaches

The strongest training gives staff approaches they can use the next day. Predictability is often central. A visual timetable, advance warning of changes and one instruction at a time can lessen anxiety and help a student get started.

Tasks may need to be broken into smaller steps, with an adult checking understanding rather than asking, "Do you understand?" A student may say yes because they want to please, because they have missed part of the instruction or because they do not yet have the language to explain what is confusing. Equally, a student may say no because they need more time to process what is being asked of them. It is not defiance. Allowing additional time for a task or question to be processed will always help. Remember it can take up to 22 seconds for a person with FASD to process a simple instruction. Asking them to show the first step, or repeat the instruction in their own words, may also help.

Visual prompts, concrete examples, repetition and extra processing time can all help. So can a calm space for regulation, movement breaks and reduced sensory demands where possible. These adjustments are not special treatment. They are ways of making learning accessible.

There is a trade-off to manage. Too much adult direction can leave a student dependent on prompts; too little can set them up to fail. Good planning gradually builds independence while keeping scaffolding available. The pace will depend on the individual child, the task and how settled they are that day.

Responding to behaviour with curiosity

Behaviour is communication, particularly when a student does not have the words, regulation skills or processing capacity to explain what is wrong. A child who refuses work may be overwhelmed by its length. A child who leaves the room may be escaping sensory overload. A child who you think is telling lies may be filling gaps in memory (confabulating) or trying to avoid a consequence they do not fully understand.

This does not mean boundaries disappear. Students need clear, consistent limits and adults have a duty to maintain a safe learning environment. But consequences that rely heavily on abstract reflection, delayed rewards or repeated sanctions may not teach the intended lesson. A more effective approach is immediate, calm and concrete: identify what happened, support regulation, practise the replacement skill and plan for the next similar moment.

Creating a joined-up support plan

One informed teacher or SNA can make a real difference, but students benefit most when support is shared across the school. Consistency matters at handover, break time, in specialist subjects, during school trips and when a familiar adult is absent. A strategy that works in one classroom can fall apart if a student is expected to cope without it elsewhere.

A simple student profile can help teaching staff understand strengths, stressors, successful supports and early signs of overload. It should use respectful, practical language rather than a list of deficits. For example, it might note that the student responds well to visual instructions, needs a reminder before transitions and finds unstructured group work challenging.

The profile should be reviewed with the student where appropriate and alongside their parent, carer or guardian. Families often hold detailed knowledge built through years of trial and error. They may know which phrases increase anxiety, how fatigue affects behaviour, or why a particular time of day is difficult. Listening to that expertise is not an optional courtesy. It is part of effective support.

For foster carers, adoptive parents, kinship carers and parents, meetings with school can sometimes feel like another place where they have to defend a child who is already misunderstood. A compassionate, solution-focused approach can ease this pressure. Focus on strengths, what the student enjoys and does well. Be specific about concerns. Agree a small number of practical actions, then review whether they are helping.

Supporting students without waiting for certainty

Some students are awaiting appropriate assessment. Others may have a diagnosis that has not yet been shared with school, or may have needs associated with prenatal alcohol exposure but no formal diagnosis. Teachers and SNAs do not need to investigate a child's history or make assumptions about their family.

They can, however, respond to the needs they see. Clear routines, visual supports, adapted instructions and regulation opportunities are helpful for many learners and can be put in place without a label. Where concerns are significant, school procedures for discussing additional needs and seeking appropriate professional guidance should be followed sensitively.

Language matters here. Avoid speaking about a student as though they are a problem to be managed, or reducing them to a diagnosis. FASD is part of a person's experience, not the whole of who they are. Students have interests, humour, creativity, determination and ambitions, alongside areas where they need more support.

Training is also a matter of prevention and inclusion

FASD education in schools is not only about individual classroom strategies. It helps build an inclusive culture in which children are less likely to be punished for disability-related differences and more likely to experience belonging. It can also give teaching staff confidence to challenge myths, including the harmful belief that a child who can do something once should always be able to do it.

For leaders, investing in training supports better communication between teaching staff, additional education needs teams, school leadership and families. It can inform policies on behaviour, attendance, transitions and wellbeing. It may also reduce the cycle in which a student is repeatedly sanctioned, excluded from learning and then described as disengaged.

FASD Ireland offers accredited, lived-experience-led training that connects evidence-informed knowledge with the day-to-day realities families and educators face. Training is most meaningful when it is followed by reflection: what will change in the classroom, the staffroom and the school's response to students who need us to understand differently?

A child should not have to fail repeatedly before adults recognise that the environment needs to change. When teachers and SNAs have the knowledge, practical tools and support to respond with curiosity, students with FASD have a better chance to learn, belong and be seen for who they are.

For more information...

FASD Support for Parents in Everyday Family Life

Wed, 03 Jun 2026 00:09:00 GMT

FASD Support for Parents in Everyday Family Life

A child may manage brilliantly for an hour, then become overwhelmed by a small change in plan, a noisy room or one instruction too many. At home, that can look like defiance, carelessness or a refusal to cooperate. For parents, it can be exhausting to know that something is difficult while struggling to explain why. FASD support for parents begins with a different starting point: your child is not giving you a hard time. They may be having a hard time.

Foetal Alcohol Spectrum Disorder (FASD) is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. Its effects are different for every person and can include differences in memory, attention, emotional regulation, sensory processing, communication, learning, sleep and daily living skills. These needs are often invisible. A child may sound confident and capable, yet need far more support than others of the same age to manage everyday demands.

You are not alone, and you do not have to become an expert overnight. The most useful support is often practical, compassionate and grounded in the reality of your family.

FASD support for parents starts with understanding

FASD is not caused by poor parenting, nor is it a label that explains away a child’s personality, strengths or potential. It can, however, help families and professionals understand patterns that have previously been misunderstood. A child who repeatedly forgets a familiar routine may have memory differences. A young person who agrees to a plan but cannot follow through may need the plan broken into manageable steps. Someone who becomes distressed in a busy shop may be experiencing sensory overload rather than deliberately challenging behaviour.

This change in understanding matters because conventional approaches can ask too much of a brain that is already working very hard. Repeated consequences, lengthy explanations and expectations based solely on chronological age may increase shame and stress without building skills. Support works best when it is adapted to the person’s actual developmental abilities on that day, in that setting.

There is no single FASD profile. Some children need significant help with communication and daily care, while others appear to cope until school demands, adolescence, independent living or social pressures become more complex. Needs can also fluctuate with tiredness, anxiety, illness, hunger and change. Seeing this variability is not inconsistency in parenting. It is part of responding to a lifelong neurodevelopmental disability.

Make daily life more predictable, not more demanding

Many families find that small adjustments reduce conflict and create a greater sense of safety. Predictability is not about making life rigid. It is about reducing the number of things a child has to hold in their head at once.

Use short, concrete language and give one instruction at a time. Rather than saying, “Get yourself ready for school”, try “Put on your socks”, then return for the next step. Visual prompts, a written checklist, pictures or laying out clothes in order can support memory without making a child feel singled out. Repetition is often a support, not a failure to learn.

Transitions deserve particular care. Give notice before leaving the house, changing activities or welcoming visitors. A simple routine such as “five minutes, two minutes, shoes on” can make a sudden demand feel more manageable. If a plan changes, explain what is changing, what is staying the same and what will happen next.

Regulation comes before reasoning. When a child is overwhelmed, their ability to process language, make decisions and learn from consequences may be reduced. Lowering noise, offering a quiet space, using a calm voice and allowing time can be more effective than trying to resolve the issue in the moment. The conversation about what happened can wait until everyone is settled.

These strategies are not a cure, and they will not make every day easy. They are ways of fitting expectations to need. What helps at home may not be enough at school, and what works in primary school may need to change in adolescence. Flexibility is part of good support.

Seeking an appropriate assessment

For some parents, the first question is whether FASD could explain their child’s needs. For others, there may already be a diagnosis but little guidance on what it means in practice. In either situation, an appropriate assessment can be an important step towards understanding and support.

Assessment should consider the whole person, including their developmental history, strengths, health, learning, behaviour, sensory needs and functioning in daily life. Information about confirmed prenatal alcohol exposure can be relevant, but families should not feel they must investigate painful or private family history alone. This can be especially sensitive for adoptive parents, foster carers, kinship carers and families where information is incomplete.

Start by documenting what you see. Keep brief notes on patterns: what happens before a difficult moment, what makes it worse, what helps, how long recovery takes and which settings create the greatest pressure. Bring school reports, previous assessments and examples of daily living difficulties to appointments. Specific examples often communicate needs more clearly than a general statement that a child is struggling.

Pathways vary, and families can encounter long waits or professionals with limited FASD knowledge. It is reasonable to ask whether a practitioner understands FASD and whether the assessment will examine neurodevelopmental needs rather than relying only on behaviour. A diagnosis can be helpful, but support should not be delayed while a family waits for one. A child’s needs are real whether or not a report has been completed.

Working with school as partners

School can be the place where a child’s difficulties become most visible. The demands are high: listening, remembering, organising belongings, reading social cues, managing noise, moving between tasks and coping with correction in front of peers. A child who holds it together all day may come home depleted, distressed or unable to manage even familiar routines.

A collaborative conversation with school is usually more productive than a focus on behaviour alone. Share the strategies that help at home, and ask staff what they notice in class, at break times and during transitions. Agree a small number of practical supports, then review whether they are working. A quiet space, visual timetable, reduced verbal instructions, movement breaks, help with organisation and extra processing time can all make a meaningful difference.

It is useful to frame support around access rather than advantage. Adjustments do not lower a child’s worth or remove all expectations. They give the child a fairer chance to understand, participate and succeed. When a strategy is not working, that is information about the support plan, not evidence that the child or parent has failed.

Protect your family’s wellbeing too

Parenting a child with complex and often misunderstood needs can bring chronic stress. There may be disrupted sleep, phone calls from school, appointments, financial pressure, judgement from others and concern about the future. Parents can find themselves constantly anticipating the next difficulty. That level of vigilance takes a toll.

Support for parents must include permission to acknowledge this honestly. Loving your child deeply and finding the role difficult can both be true. Make room for practical respite where it is available, and consider what helps you recover in small, realistic ways: a trusted person who understands, a walk, a regular check-in with your partner or family member, or time where you are not required to solve the next problem.

Siblings may need their own space to talk about family life too. They do not need to carry responsibility beyond their age, but they can benefit from simple, compassionate explanations about why their brother or sister may need different support. Fair does not always mean identical.

Find people who understand without judgement

Isolation grows when families feel they have to explain FASD from the beginning every time. Peer support offers something different: a community that listens without judgement and recognises the daily realities behind the labels. Parents, grandparents, foster carers, adoptive parents and kinship carers can share strategies, ask difficult questions and feel less alone.

FASD Ireland provides lived-experience-led peer support, practical information and training for families and professionals affected by FASD. Connecting with others does not mean every family will have the same experience or the same answers. It means you do not have to carry every question on your own.

Your child is more than their challenges, and you are more than the person trying to manage them. Keep asking for support that is informed, respectful and specific to your family. The right understanding can change not only the plan for a difficult day, but the way everyone sees what is possible.

For more information...

The Joe Finnegan Show - Podcast - FASD

Thu, 28 May 2026 11:17:45 GMT

The Joe Finnegan Show on Shannonside FM

In this radio interview on The Joe Finnegan Show on Shannonside FM, Tristan Casson‑Rennie from FASD Ireland talks about Foetal Alcohol Spectrum Disorder (FASD) and how it affects children, adults and families in everyday life.

The conversation explains FASD in a clear and easy‑to‑understand way, focusing on the real‑life challenges people may face, such as learning difficulties, behaviour struggles, emotional regulation, and coping with daily routines. It highlights that FASD is often a hidden disability, meaning people may not realise what someone is dealing with just by looking at them.

The interview also talks about the lack of awareness and support in Ireland, and how this can leave parents and carers feeling confused or alone. There is a strong message about the need for understanding, early support, and kindness, rather than judgement or blame.

This audio is helpful for parents, carers, professionals and anyone who wants to better understand FASD and why support and awareness matter.

Listen below.

What to Expect from FASD Assessment for Children

Wed, 27 May 2026 00:06:00 GMT

What to Expect from FASD Assessment for Children

When a child’s needs have been misunderstood for years, the question of an assessment can carry a great deal of hope, worry and exhaustion. You may be wondering whether Foetal Alcohol Spectrum Disorder could explain difficulties with learning, memory, emotions, sensory processing, friendships or everyday routines. A FASD assessment for children is not about finding fault with a child or family. It is about building a clearer picture of a child’s neurodevelopmental needs and identifying support that respects who they are.

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. Every child is different. Some may appear confident and capable in one setting, then become overwhelmed or unable to cope in another. Others may have been described as naughty, lazy, defiant or inattentive when their behaviour is actually communicating a difficulty with processing, regulation, memory or understanding.

You are not alone in seeking answers. A thoughtful, appropriate assessment can help families and professionals move away from blame and towards practical, compassionate support.

Why an FASD assessment for children can matter

A diagnosis is not a label to limit a child’s future. For many families, it offers language for experiences that have been hard to explain. It can help adults understand why repeated reminders do not always work, why a child may know a rule one day but struggle to use it the next, or why ordinary transitions can lead to distress.

Assessment may also identify other needs which deserve support in their own right. Children affected by prenatal alcohol exposure can have differences in areas such as attention, executive functioning, communication, adaptive skills, sensory processing, sleep, motor skills and emotional regulation. They may also have co-occurring conditions. An assessment should look at the whole child rather than trying to explain every difficulty through one diagnosis.

This understanding can change the conversation at home and school. Instead of asking, “Why won’t they?”, adults can begin to ask, “What is getting in the way, and what support will help?” That shift is often powerful.

What an appropriate assessment looks like

There is no single blood test, scan or checklist that can diagnose FASD. An appropriate assessment is usually a detailed, multidisciplinary process. Depending on the child’s age, needs and local pathway, it may involve professionals with expertise in paediatrics, psychology, speech and language therapy, occupational therapy or other relevant areas.

The team will consider the child’s developmental history, health, learning and day-to-day functioning. They will explore whether prenatal alcohol exposure is known or documented, where this information is available. They will also assess difficulties across different areas of brain development and consider other possible explanations for a child’s presentation.

A child does not need to have distinctive facial features for FASD to be considered. Most people with FASD do not have these features. Equally, behaviour alone cannot confirm FASD. This is why a full neurodevelopmental assessment, undertaken by professionals who understand FASD, matters.

The pathway can vary across Ireland. Some families begin by speaking with their GP, Paediatrician, Child and Adolescent Mental Health Service (CAMHs), Children's Disability Network Team (CDNT) or School SENCo. Availability and referral criteria differ between counties, and waiting can be difficult. If a referral is not available locally, it may still be helpful to ask what neurodevelopmental assessments and supports can be offered for the child’s identified needs.

Prenatal alcohol exposure and sensitive conversations

Families can feel anxious about being asked about prenatal alcohol exposure. These conversations must be handled with care, privacy and without judgement. The purpose is to ensure a child receives the most accurate assessment and support possible, not to assign blame.

For adoptive families, foster carers, kinship carers and others, information about pregnancy may be incomplete or unavailable. This is common and it is not a reason to dismiss a child’s needs. Professionals can document what is known, consider the child’s developmental profile and make decisions in line with the diagnostic guidance and services available to them.

If you are a parent who drank alcohol before knowing you were trying to conceive or pregnant, you deserve kindness, not shame or blame. FASD is complex, and a child’s needs should always be met with compassion. Prevention messages are important because no amount or type of alcohol is known to be safe in pregnancy, however support must never be stigmatising.

Preparing for an assessment appointment

You do not need to arrive with every answer. In fact, many carers have spent years gathering fragments of information from schools, appointments and difficult days at home. Bringing those fragments together can be useful.

Before an appointment, write down examples of what you see in daily life. Focus on patterns, not only crises. Does your child forget a familiar instruction after a few minutes? Do they cope at school but fall apart after coming home? Are they very literal, easily led by peers, unable to judge danger, or overwhelmed by noise, clothing or changes to routine? Specific examples help professionals understand the impact on everyday life.

It may also help to bring school reports, educational psychology reports, speech and language or occupational therapy notes, medical letters and any information about early development. If relevant and safe to share, bring records relating to prenatal alcohol exposure. Ask whether the team would value input from school or other adults who know your child well.

Children can find assessment tiring, especially when appointments involve unfamiliar people, questions or tasks. Let the service know in advance about communication needs, sensory sensitivities, anxiety, breaks, comfort items or the best time of day for your child. Reasonable adjustments are not an extra - they are part of making the assessment fair.

Questions worth asking the team

It is reasonable to ask whether the professionals involved have experience of FASD and which diagnostic approach they use. You can also ask what the assessment will involve, how long it may take, what information is needed, and whether a written report will be provided.

At the feedback appointment, ask for explanations in plain language. A report can contain technical terms, but it should clearly describe your child’s strengths, areas of difficulty and recommended supports. Ask which recommendations can begin now, who is responsible for each next step, and how the findings can be shared with school or relevant services.

If the outcome is uncertain or does not lead to a formal diagnosis, that does not mean your child has no needs. A good assessment should still recognise functional difficulties and guide support. Children should not have to wait for a particular label before adults make sensible adjustments.

Support does not need to wait for diagnosis

While families wait for an assessment, practical changes can reduce stress. The right strategies depend on the child, but many benefit from calm, predictable routines; short, concrete instructions; visual reminders; extra processing time; sensory breaks; and adults who repeat support without assuming a child is choosing not to cooperate.

At school, a child may need work broken into smaller steps, help with transitions, a quieter space, movement opportunities or support with social situations. Expectations should reflect their developmental skills, not just their age or verbal ability. A child who sounds mature may still need substantial help with planning, cause and effect, money, safety, time or emotional regulation.

Home can become more manageable when carers reduce unnecessary demands and build in connection before correction. This does not mean having no boundaries. It means recognising that support, supervision and co-regulation are often more effective than consequences alone when a child’s brain is struggling to cope.

Families also need support. Caring for a child with complex, often invisible needs can be isolating and can place pressure on relationships, work and wellbeing. Peer support can offer a community that listens without judgement, shares practical ideas and understands that progress is rarely a straight line. FASD Ireland can be a source of lived-experience-led information and connection for families seeking to understand their options.

An assessment may provide a name for what your child is living with, but their worth was never dependent on a diagnosis. Keep asking for support that fits the child in front of you - with patience, informed advocacy and people around you who understand.

For more information...

How is FASD Diagnosed? A Guide for Families

Wed, 20 May 2026 12:09:00 GMT

How is FASD Diagnosed? A guide for Families

A school report may describe a child as distracted, impulsive or struggling to keep up. At home, they may forget familiar routines, become overwhelmed by everyday demands or seem far younger than their age in some situations. For many families, the question that follows is: how is FASD diagnosed?

There is no single blood test, brain scan or checklist that can confirm Foetal Alcohol Spectrum Disorder. Diagnosis is a careful, specialist process that looks at the whole person: their development, daily functioning, health, learning profile and history of prenatal alcohol exposure where this is known. It should be respectful, evidence-informed and free from blame.

FASD is a lifelong neurodevelopmental disability. An appropriate assessment can help explain needs that have too often been misunderstood as defiance, poor parenting or a lack of effort. It can also open the door to more suitable support at home, in education, healthcare and adult services.

How is FASD diagnosed in practice?

FASD is diagnosed through a comprehensive clinical assessment, usually involving professionals with relevant training and experience. The exact pathway and diagnostic framework can differ between services, but a good assessment does not rely on one appointment or one professional's opinion.

The assessment considers whether there is evidence of prenatal alcohol exposure, alongside differences in brain development and functioning. Prenatal alcohol exposure may be confirmed through medical, maternity or social care records, or through reliable information from a parent or other person who knows the pregnancy history. These conversations must be handled with sensitivity. Alcohol use in pregnancy can be bound up with difficult circumstances, limited information, coercion, trauma, addiction or a lack of support. The purpose is to understand a person's needs, not to judge anyone.

A confirmed history of prenatal alcohol exposure can be important in many diagnostic approaches. However, families do not always have access to this information, particularly where a child has been adopted, is in foster or kinship care, or has had disrupted early records. A missing history should not end the conversation about support. It may affect whether a formal FASD diagnosis can be reached under a particular framework, but the person's neurodevelopmental needs still deserve assessment and practical help.

Professionals will also assess how the brain is working in everyday life. This may include difficulties with memory, attention, planning, impulse control, emotional regulation, communication, sensory processing, learning, motor skills and understanding cause and effect. Adaptive functioning matters too. A person may speak well or appear capable, yet struggle to manage time, money, safety, personal care, relationships or changing routines without support.

Physical features can sometimes be considered, particularly in younger children, but they are not present in everyone with FASD. Their absence does not rule FASD out. Most people affected by prenatal alcohol exposure do not have obvious facial characteristics, which is one reason a full neurodevelopmental assessment is so important.

What an appropriate assessment usually involves

Assessment often begins with a referral to an appropriate health or specialist service. Depending on a person's age, needs and local pathway, this might involve a GP, paediatrician, psychologist, psychiatrist, speech and language therapist, occupational therapist or other members of a multidisciplinary team.

The process can take time. This can feel frustrating, especially when a family has spent years seeking answers. Yet a thorough assessment needs to distinguish FASD from, or identify it alongside, other conditions and experiences that can affect development. Autism, ADHD, developmental language disorder, learning disability, attachment difficulties, trauma, genetic conditions, sleep problems and mental health needs may all be considered. These can coexist with FASD. The aim is not to fit someone into a neat category, but to build an accurate picture of what will help.

An assessment may include developmental and medical history, school reports, observations, interviews with parents or carers, cognitive testing and assessments of speech, language, sensory and motor skills. For adults, it may also consider employment history, independent living skills, relationships, mental health and contact with services. Professionals may ask about early development, education, behaviour, previous assessments and support already tried.

The person being assessed should be included in a way that suits their age and communication needs. Children and adults can find assessments tiring, unfamiliar or anxiety-provoking. Clear explanations, breaks, quiet spaces and familiar support can make a real difference. A strong assessment identifies strengths as well as challenges. Many people with FASD are caring, determined, creative, sociable and highly perceptive, even while needing substantial support with daily demands.

Diagnosis is not the same as screening

A screening tool, school questionnaire or initial professional concern can identify that further assessment may be helpful. It cannot, on its own, diagnose FASD. Equally, a general developmental assessment may identify real difficulties without exploring prenatal alcohol exposure or the pattern associated with FASD.

If you are seeking assessment, it is reasonable to ask whether the professional or service has specific experience of FASD and whether the process follows an established diagnostic approach. Families should not have to educate every service they meet, although many find that sharing a concise history and existing reports helps professionals see the full picture.

Preparing for an FASD assessment

You do not need perfect records to ask for help. Start with what you know and bring information together gradually. It can help to make a short timeline of key events and needs, rather than trying to explain everything in one emotional appointment.

Where available, gather:

medical, developmental and maternity records, including any known information about prenatal alcohol exposure;
reports from school, educational psychology, speech and language therapy, occupational therapy or previous health assessments;
examples of day-to-day difficulties, such as problems with routines, safety, sleep, sensory overload, friendships or managing change;
information about strengths, interests and what helps the person feel regulated and successful; and
details of previous diagnoses, medication, significant life events and supports already in place.

Keep notes in plain language. For example, instead of writing that a child has poor executive function, you might note that they cannot begin a familiar task without repeated prompts, forget instructions after a few minutes and panic when plans change. Real-life examples help show the gap between what someone appears able to do and what they can manage consistently.

If pregnancy history is unknown or painful to discuss, say so. You can ask the professional how this will be recorded and what other evidence may be relevant. Families deserve compassion throughout this process, including birth parents who may carry fear or shame. FASD is a public-health and support issue, not a reason to blame people.

What happens after diagnosis, or while you are waiting

A diagnosis can bring relief, grief, anger or all three. It may explain years of worry and repeated experiences of being misunderstood. It does not change who the person is. It gives a clearer framework for understanding their brain and for adapting expectations, environments and support.

The most useful next steps are usually practical. Families may need help to communicate with school, request reasonable adjustments, plan calmer routines, manage sensory needs, access welfare supports or prepare for transitions into adulthood. The recommendations in an assessment report should be specific. Broad advice to provide support is rarely enough. Useful recommendations describe what support is needed, when, by whom and why.

Support should not be withheld while a diagnosis is being explored. If a child or adult has clear needs with memory, regulation, communication, learning or daily living, accommodations can be put in place now. Predictable routines, visual reminders, reduced language, extra processing time, sensory supports and calm, relationship-based responses can help whether or not a formal diagnosis has been confirmed.

For adults, assessment can be especially significant. Many have spent years being labelled as careless, difficult or incapable, without recognition of their neurodevelopmental disability. An adult assessment should take account of lifelong patterns, not only current crisis or mental health symptoms.

You are not alone in finding the system difficult to navigate. FASD Ireland offers lived-experience-led information and peer support for people affected by FASD, including families seeking clarity around assessment and diagnosis. A community that listens without judgement can make the waiting and uncertainty more manageable.

If you are beginning this journey, start with one clear step: write down the needs you are seeing and speak to a professional who will take them seriously. Whether a diagnosis comes quickly, takes time or remains uncertain, the person in front of you deserves understanding, appropriate support and a future shaped by their strengths as well as their challenges.

For more information...

Ireland Must Confront the Hidden Lifelong Impact of Foetal Alcohol Spectrum Disorder (FASD), Experts Warn at National Conference

Mon, 18 May 2026 12:04:44 GMT

Ireland Must Confront the Hidden Lifelong Impact of Foetal Alcohol Spectrum Disorder (FASD), Experts Warn at National Conference

FASD Ireland has called for urgent national action to address the growing impact of Foetal Alcohol Spectrum Disorder (FASD) in Ireland following its 2nd Annual National Conference, held at Hotel Woodstock, Ennis, Clare, on 14 & 15 May 2026, which brought together leading clinicians, researchers, legal experts, educators, social care professionals, and people with living experience from Ireland and internationally.

The conference heard stark warnings that Ireland’s entrenched relationship with alcohol, combined with low public awareness of the risks of prenatal alcohol exposure, continues to drive preventable brain injury in unborn children.

FASD is caused by prenatal alcohol exposure and is a lifelong neurodevelopmental disability that can affect memory, learning, impulse control, emotional regulation, communication, adaptive functioning, physical health, and social understanding. While outcomes vary significantly, FASD can affect every aspect of a person’s life from infancy through to adulthood.

International prevalence studies suggest that FASD affects an estimated 8 in every 1,000 of population globally, with prevalence in Ireland estimated to be significantly higher, at up to 7.4% of population (HSE Position Paper on FASD Prevention September 2022). Conference speakers warned that Ireland’s historic and cultural normalisation of alcohol consumption means Ireland is now facing a silent epidemic.

Speaking at the conference, Dr. Julian K Davies, Clinical Professor of Paediatrics at the University of Washington, Seattle, and one of the world’s leading FASD clinicians, highlighted the scale of prenatal alcohol exposure in Ireland and the profound developmental consequences that can follow.

Dr Davies told delegates: “FASD is a complex developmental brain injury. The brain is trying to do the best it can with the hardware and software it has.”

He explained that FASD is frequently misunderstood because many individuals do not present with obvious physical characteristics. “One in ten of the people we see in clinic have the face of Foetal Alcohol Syndrome (FAS). Ninety percent don’t.”

Dr Davies emphasised that FASD is not simply a childhood condition, but a lifelong disability requiring ongoing support and understanding across healthcare, education, housing, employment, social services, and the justice system.

“The gaps between folks with FASD and their peers can widen, particularly at these turning points. The hope is that we can close those gaps with time and intervention.”

Addressing Ireland’s drinking culture and the need for prevention, Dr Davies noted that no amount of alcohol during pregnancy can be considered safe, and emerging evidence also points to risks associated with paternal alcohol consumption prior to conception.

“No amount of drinking during pregnancy is safe.”

“Out of an abundance of caution, it’s great to ask dads to not drink in the 90 days before conception.”

The conference heard that FASD remains significantly underdiagnosed and misunderstood in Ireland despite increasing evidence of its prevalence within mental health services, addiction services, homelessness, disability services, care-experienced populations, and the criminal justice system.

Delegates also heard how many behaviours associated with FASD are often wrongly interpreted as deliberate misconduct rather than manifestations of neurological disability.

Dr Davies stated: “If you’ve told a child a thousand times and the child has still not learned, then it’s not the child who is the slow learner.”

Throughout the two-day conference, speakers stressed the importance of moving away from shame and stigma towards informed prevention, early intervention, compassionate supports, and FASD-informed public services.

FASD Ireland said the conference demonstrated both the urgent need for national action and the growing momentum for change.

Tristan Casson-Rennie, CEO at FASD Ireland said: “FASD is not rare - it is rarely diagnosed. Ireland urgently needs a coordinated national response that includes public awareness, professional training, diagnostic pathways, family supports, and lifelong disability-informed services. The evidence presented at this conference makes clear that FASD affects individuals across every stage of life and every part of society. It is now time that the HSE stepped up to deliver a National Clinical Lead, a National Clinic, and a framework of support that people living with the condition and their families can depend upon.”

FASD Ireland also called for stronger public health messaging around alcohol and pregnancy, including greater awareness that many pregnancies are unplanned and that alcohol exposure can occur before pregnancy recognition. It is also important that FASD is recognised as a conception issue, with responsibility to prevent the condition shared between both parents. To date, the woman is always the focus of the public health messaging the HSE produces. Even the latest campaign, launched last month depicts a heavily pregnant woman being scrutinised or implicitly chastised by those around her. This is particularly problematic. Such portrayals can discourage open engagement with healthcare services and undermine trust, which is counterproductive to effective prevention efforts.

The conference additionally explored the intersection between FASD and the law, including the heightened vulnerability of people with FASD within the criminal justice system due to difficulties with impulse control, adaptive functioning, suggestibility, confabulation, and social vulnerability.

Dr Davies concluded his keynote by urging professionals and families to focus not only on deficits, but also on strengths and belonging.

“If they are connected, supported, know that they are loved, know that they belong, and have areas of strength that they see and acknowledge - that is a win.”

ENDS

Media Contact:

FASD Ireland

Email: scott@fasdireland.ie

Website: FASD Ireland

Telephone: 065 670 3096

FASD Ireland with Clare FM - Documentary

Mon, 11 May 2026 10:39:48 GMT

FASD Ireland and Clare FM - 'The Hidden Disability' Documentary

We were delighted to be approached by Padraic Flaherty from Clare FM to commission a radio documentary on Foetal Alcohol Spectrum Disorder.

The Hidden Disability is a Clare FM radio documentary that shines a light on Foetal Alcohol Spectrum Disorder (FASD), a lifelong and often misunderstood condition that affects individuals, families, and communities across Ireland.

Through the voices of people living with FASD, parents and carers, and leading experts, the documentary explores what it means to live with this hidden disability. It highlights the daily challenges faced by people living with FASD, including difficulties with learning, behaviour, relationships, and navigating systems that are not always designed with neurodiversity in mind.

The programme also addresses the lack of awareness, late diagnosis, and limited supports currently available in Ireland, while emphasising the importance of understanding, early support, and compassionate responses rather than blame or stigma.

Produced by Clare FM’s Programme Director and Head of Operations Padraic Flaherty, The Hidden Disability aims to start meaningful conversations, raise national awareness, and ensure that the lived experiences of those affected by FASD are heard and recognised.

This documentary is an important step in helping Ireland better understand FASD reminding us that while the disability may be hidden, the impact is real.

Video: Jacob Casson-Rennie - Living Experience Remarks - FASD Research Conference 2026

Tue, 21 Apr 2026 10:53:26 GMT

Video: Jacob Casson-Rennie - Living Experience Remarks -

 FASD Research Conference 2026

Our very own Jacob Casson-Rennie had the opportunity to share his Living Experience at this 2026 FASD Research Conference in Seattle. Our thanks to the organisers at FASD United for giving him the opportunity. You can watch the video below

Moving the Spotlight towards FASD

Mon, 20 Apr 2026 11:30:08 GMT

Podcast - Moving the spotlight towards FASD

Stories from Foster Care – Scott and Tristan Casson-Rennie

Fri, 10 Apr 2026 11:55:51 GMT

Stories from Foster Care – Scott and Tristan Casson-Rennie

In this episode of Stories from Foster Care, Andrew Murphy talks to Scott and Tristan Casson-Rennie about their adoption and fostering journeys as a same-sex couple. The conversation then focuses on their passion, as founders of FASD Ireland, to bring awareness about the effects of Foetal Alcohol Spectrum Disorder (FASD) to all areas of Irish society.

FASD results when prenatal alcohol exposure occurs, by either parent, and affects the developing foetus’ brain and body. Tristan shares information on the nature and prevalence of this brain condition which will be valuable for anyone caring for a child with FASD, or for carers or parents who suspect that their child may have the condition.

Listen below

NEAR FM interview with our CEO Tristan

Fri, 27 Mar 2026 11:44:53 GMT

NEAR FM interview with our CEO Tristan

NEAR FM's Ger Ledden popped into our offices a few weeks ago to speak to our CEO Tristan about all things FASD.

Our CEO Tristan speaks to Marian Herriott at Connemara Community Radio

Wed, 25 Mar 2026 11:00:23 GMT

Our CEO Tristan speaks to Marian Harriet at Connemara Community Radio

Following the shocking statistic from FASD Ireland that 57% of calls in the first quarter of 2026 to FASD Hub Ireland related to children in the 5 to 6 year old age bracket, Tristan spoke to Marian in the weekly Health Section on Connemara Community Radio.

Chair of FASD Ireland Advisory Board Kate FitzHerbert talks to Brian Redmond

Tue, 24 Mar 2026 15:37:25 GMT

Chair of FASD Ireland Advisory Board talks to Brian Redmond on The KCLR Daily

Kate FitzHerbert, Chair of FASD Ireland Advisory Board was delighted to join Brian Redmond in the Studio at KCLR FM to talk about Foetal Alcohol Spectrum Disorder on the KCLR Daily.

The interview recorded on 24/4/2026 show can be listened to below, and begins at 2h 42m 42s.

Our CEO Tristan on Newstalk 'Let Me Explain' Podcast with Seán Defoe

Tue, 24 Mar 2026 13:35:09 GMT

Our CEO Tristan appeared on Newstalk 'Let Me Explain' Podcast with Seán Defo

Click the button below to listen the 21 minute episode.

Our CEO Tristan interviewed on Castlebar Community Radio

Mon, 23 Mar 2026 17:18:18 GMT

Our CEO Tristan interviewed on Castlebar Community Radio

On Thursday 19th March, our CEO, Tristan, was invited onto Castlebar Community Radio on The Chatroom with Angela Faull. FASD Ireland were delighted with the research that had gone into FASD and FASD Ireland after our recent news report that 57% of families who contacted FASD Hub Ireland during the first three months of 2026 are seeking support for children under the age of six who are showing signs of Foetal Alcohol Spectrum Disorder (FASD). Huge thanks to Castlebar Community Radio and Angela for having us. You can listen to the full interview below.

FASD Ireland reports an increase of families with children aged under 6 living with FASD

Fri, 13 Mar 2026 11:19:12 GMT

FASD Ireland has reported that 57% of families who contacted FASD Hub Ireland during the first three months of 2026 are seeking support for children under the age of six who are showing signs of Foetal Alcohol Spectrum Disorder (FASD)

Many of these concerns have only become apparent after children began primary school , when differences in learning, behaviour, and emotional regulation start to emerge.

According to the Health Service Executive (HSE) in 2022, one in ten babies born in Ireland is estimated to have a form of FASD, making it the most prevalent neurodevelopmental disability in the country. Following the Covid-19 lockdowns, patterns of alcohol consumption changed significantly as home drinking became more normalised. During the same period, births in Ireland rose for the first time in several years, reaching over 57,000 births in 2022 according to the Central Statistics Office.

The HSE now estimates that up to 7.4% of the population in Ireland may be living with FASD.

Tristan Casson-Rennie, CEO of FASD Ireland, said the organisation is now beginning to see the expected increase in families seeking support as affected children reach school age.

“The symptoms of Foetal Alcohol Spectrum Disorder often begin to become visible from around the age of five and can be fully recognisable by the time a child reaches ten,” said Casson-Rennie. “What we are seeing now are parents who know something is not quite right for their child but are struggling to find information, diagnosis, and support.”

FASD is a lifelong neurodevelopmental condition caused by prenatal alcohol exposure. No amount is safe for a woman to drink at any stage of pregnancy. Emerging research also highlights the role of paternal alcohol consumption prior to conception.

Recent research led by Professor Michael Goulding at Texas A&M University (2025) has found that alcohol consumption by a father in the 64 days prior to conception can cause epigenetic changes in sperm. These changes may influence the developing embryo and have been associated with:

· Increased anxiety and ADHD-type behaviours

· FASD-like growth defects including reduced bodyweight

· Cranial abnormalities and structural brain changes

The research also suggests that paternal alcohol exposure may predispose children later in life to cardiovascular, renal, inflammatory, or diabetic conditions after the age of 40.

FASD Ireland says these findings reinforce the importance of public awareness about alcohol and reproductive health for both parents.

“Ireland has one of the highest estimated prevalence rates of FASD in the w orld, yet public awareness and diagnostic capacity remain extremely limited,” Casson-Rennie added. “Families are reaching out because they want answers and support. Early recognition and intervention can make a profound difference in a child’s life.”

As children born during the pandemic years begin primary education, FASD Ireland expects more families and schools to come forward seeking help and guidance.

FASD Ireland is calling for:

· Increased national awareness campaigns about the risks of alcohol and conception/pregnancy for both parents

· Improved assessment and diagnostic pathways for children

· Training for teachers and healthcare professionals about FASD

· Sustainable funding for services supporting families affected by FASD

Families and Schools concerned about FASD can contact FASD Hub Ireland, the national information and support service:

�� FASD Hub Ireland: 065 670 3098
�� Website: www.fasdireland.ie

Media Contact:
FASD Ireland
Email: scott@fasdireland.ie
Phone: 065 670 3096

FASD Ireland welcomes the very first FASD Awards School

Mon, 02 Mar 2026 12:10:55 GMT

Ballinlough National School in Roscommon becomes the first school in Ireland to be formally recognised as an ‘FASD Aware School’

Ballinlough National School in Roscommon has made national history by becoming the first school in Ireland to be formally recognised as an ‘FASD Aware School’, following the successful completion of the FASD in the Classroom

training programme by its entire staff team.

Foetal Alcohol Spectrum Disorder (FASD) is a complex and challenging neurodevelopmental condition that affects up to 7.4% of the population (HSE September 2022). With impacts on learning, behaviour, emotional regulation, and

daily functioning, FASD is often misunderstood or overlooked. By undertaking this comprehensive training, Ballinlough National School has taken a pioneering step to ensure students living with FASD and those with similar support needs

receive informed, compassionate, and effective educational support.

The whole staff training, delivered by FASD Ireland, provides educators with practical tools and strategies to recognise the symptoms of FASD, adapt classroom environments, and create learning approaches that reduce stress and

enable children to thrive.

A First for Ireland Ballinlough National School’s commitment marks the first time an Irish school has achieved official ‘FASD Aware School’ status, setting a new benchmark for inclusive and trauma informed education nationwide.

Tara Jordan, Principal of Ballinlough National School, said: “The ‘FASD in the Classroom’ training has had a direct and meaningful impact on teaching and learning at Ballinlough National School. Staff are now more aware, informed and

attuned to the diverse needs of children living with Foetal Alcohol Spectrum Disorder in our care. The training we received from FASD Ireland has empowered all team members to confidently manage the complexities associated with FASD in the classroom, on yard or on the bus, ensuring consistent and supportive responses throughout the school day.”

Jordan continued, “This learning supports not only the children who have been diagnosed with FASD but also those who may remain undiagnosed. By strengthening our understanding and practice for one child through training of

any kind, we benefit all learners in our school.”

Tristan Casson Rennie, CEO of FASD Ireland, praised the school’s leadership and vision: “Ballinlough National School is leading the way. Their entire staff team from the Principal to School Bus Driver have demonstrated a deep commitment

to inclusion and to understanding the unique needs of children with FASD. We hope many more schools will follow their example, so that every child across Ireland can benefit from informed, compassionate teaching.”

Championing Inclusion

Through their new ‘FASD Aware School’ status, Ballinlough NS will:

• Embed FASD informed strategies throughout teaching and learning

• Foster a calm, flexible, sensory aware school environment

• Strengthen communication between staff, families, and support services

• Model inclusive practice for other schools regionally and nationally

About FASD Ireland

FASD Ireland is the country’s national organisation providing support, advocacy, and training for people living with Foetal Alcohol Spectrum Disorder, their families, and professionals working to support them. The FASD in the Classroom

programme equips educators with evidence-based skills including brain-based approaches, co-regulation, de-escalation, and emotional support strategies for neurodiverse learners.

In memory of Alli MacNamara

Mon, 15 Dec 2025 08:32:44 GMT

In memory of Alli MacNamara

FASD Ireland Statement on the Passing of Alli MacNamara

Everyone at FASD Ireland is deeply saddened to learn of the passing of Alli MacNamara from FASD Awareness NI/Oshay’s Brain Domain.

We extend our heartfelt condolences to her husband Brian, her children Reece and Jordan, her family, friends, and all those across Ireland whose lives Alli touched.

In 2022, when we announced our new contact number as our phone line was connected, Alli was our very first caller, not 30 minutes later.

Reflecting on their relationship, our CEO, Tristan Casson-Rennie, shared: “In the past six months I have worked very closely with Alli. We spoke on the phone many times since we launched in 2022, and our main theme was how we could work collaboratively to ensure families could be supported. Earlier this year I was absolutely delighted and honoured to be asked to speak at the very first conference organised by Alli in Lisburn, which was well attended, supported, and covered by the BBC. The conference is only one of the many legacies Alli leaves behind and she will be sorely missed by the FASD community across Ireland.”

Alli was a passionate advocate, a caring champion for families affected by Foetal Alcohol Spectrum Disorder, and a dedicated collaborator. Her warmth, kindness, and unwavering commitment to raising awareness and supporting those impacted by FASD will be greatly missed. During our joint work—especially at cross‑border events and training initiatives, Alli’s compassion, authenticity, and generosity shone brightly.

We mourn her loss together and stand in solidarity with the FASD Awareness NI/Oshay's Brain Domain community as they grieve. Alli’s legacy will live on through her tireless efforts to educate, empower, and support families navigating the challenges of FASD. May her memory continue to inspire us as we carry forward her vital work.

Rest in power, Alli.

Ar dheis Dé go raibh a hanam.

From your family at FASD Ireland.

Budget 2026 Fails People Living with FASD and Ignores Alcohol Related Harm

Tue, 07 Oct 2025 14:42:32 GMT

FASD Ireland responds to Budget 2026

Tristan Casson-Rennie, CEO of FASD Ireland, has today expressed deep disappointment at the Irish Government’s 2026 Budget, describing it as “Failing People living with Foetal Alcohol Spectrum Disorder (FASD) and Ignoring Alcohol Related Harm”.

Echoing the Disability Federation of Ireland’s (DFI) assessment that the Budget is “a betrayal of disabled people, stripping away vital supports, deepening poverty”, Casson-Rennie said “This Budget does nothing to recognise or support the many thousands of people across Ireland living with FASD — one of the most prevalent yet most neglected neurodevelopmental conditions,” he said. “The recent RCSI report, ‘ FASD in Ireland – Wellbeing, Living Experience and the Need for Change ’, clearly shows the challenges faced by individuals and families every day. Yet today’s Budget offers them nothing — no plan, no funding, and no recognition.”

“Once again, the Government has failed to acknowledge the real harm caused by alcohol in our society. Not a single cent of new tax has been placed on alcohol, and there is no mention whatsoever of an Alcohol Related Harm Fund — a measure long recommended by FASD Ireland and Alcohol Action Ireland. Such a fund operates successfully in countries like New Zealand, where it supports prevention, awareness, and early intervention. Ireland could and should do the same,” Casson-Rennie said.

He also criticised the Government’s continued failure to abolish the means testing of carers, calling it “demeaning and unjust.”

“Parents and carers continue to endure almost forensic interrogation just to qualify for a basic state payment — for doing one of the hardest jobs imaginable: staying at home to care for a child or adult with significant needs. It’s indefensible that this continues in 2026,” he added.

Casson-Rennie concluded by calling for urgent political will to address the growing crisis and silent epidemic of FASD in Ireland. With the recent publication of FASD Ireland's research concluded by Royal College Surgeons Ireland, now is the time to act.

“This Budget was a chance to show leadership, compassion, and foresight. Instead, it shows indifference. People with FASD, their families, and carers deserve far better.”

FASD Awareness Month & International FASD Awareness Day 2025: A Landmark Month for Change

Tue, 30 Sep 2025 09:22:31 GMT

FASD Awareness Month & International FASD Awareness Day 2025: A Landmark Month for Change

September 2025 was a transformative month for FASD Ireland, filled with powerful moments of advocacy, education, and connection. As we marked FASD Awareness Month and International FASD Awareness Day on 9th September, we amplified voices, launched critical research, and brought communities together across the island of Ireland.

Launch of Groundbreaking National Research

On FASD Awareness Day, we proudly co-hosted the launch of a landmark research report by the Royal College of Surgeons in Ireland (RCSI) — the first of its kind to provide an evidence-based picture of FASD in Ireland. The findings were stark: FASD is the most prevalent yet least diagnosed neurodevelopmental condition in the country. The report called for urgent action, including:

FASD-specific training across sectors
Clear diagnostic and support frameworks
Dedicated services for assessment and lifelong support

Senator Anne Rabbitte, who received the FASD Champion 2025 Award, delivered a passionate call for systemic change and reaffirmed her commitment to national awareness and support.

FASD in Adulthood: Public Awareness Event in Ennis

Our public awareness event at the Buttermarket in Ennis focused on FASD in Adulthood, engaging employers, HR professionals, and educators. The event highlighted how simple accommodations can create inclusive environments for adults living with FASD.

#LightItRed & Red Shoes Rock

As part of the global #LightItRed campaign, Leinster House was illuminated in red for the second year running — a powerful symbol of solidarity. Supporters across Ireland joined the Red Shoes Rock movement, wearing red shoes and sharing photos to spark conversations and raise awareness.

Introduction to FASD Training – Online & In-Person

Throughout the month, we delivered multiple sessions of our CPD-accredited “Introduction to FASD” training, both online and in-person. These 3-hour workshops, led by CEO Tristan Casson-Rennie, provided foundational knowledge on FASD, its impact, and practical strategies for support. The sessions were attended by parents, carers, educators, clinicians, and social workers across Ireland and Northern Ireland.

Collaborative working: Lisburn Conference

We also participated in a cross-border conference in Lisburn, strengthening partnerships with professionals and families in Northern Ireland. This event, held by Oshays Brain Domain, underscored the importance of all-island collaboration in addressing FASD and ensuring consistent support across jurisdictions.

Looking Ahead

FASD Awareness Month 2025 was a turning point — but it’s only the beginning. At FASD Ireland, we remain committed to:

Raising awareness through education and advocacy
Supporting families and individuals living with FASD
Challenging stigma with compassion and facts
Pushing for policy change and dedicated services

Thank you to everyone who stood with us this September. Whether you attended an event, shared a post, wore red, or simply listened — you made a difference.

Together, we are #FASDStrongerTogether.

FASD Ireland Launches Groundbreaking RCSI Research on International FASD Awareness Day

Wed, 17 Sep 2025 09:43:42 GMT

FASD Ireland Launches Groundbreaking RCSI Research on

International FASD Awareness Day

On 9th September, International FASD Awareness Day, FASD Ireland proudly co-hosted the launch of a landmark research report conducted by the Royal College of Surgeons in Ireland (RCSI), the first of its kind to provide an evidence based picture of Foetal Alcohol Spectrum Disorder (FASD) in Ireland.

This day, marked globally on the 9th day of the 9th month to symbolise the nine months of pregnancy, brought together advocates, researchers, families, and policymakers in a united call for recognition, action, and support for those living with FASD.

A Turning Point for Ireland

The RCSI research marks a pivotal moment in Irish public health and disability policy. It reveals the true scale and impact of FASD, the most prevalent yet least diagnosed neurodevelopmental condition in Ireland, affecting learning, behaviour, and opportunity across the lifespan.

Speaking at the event, Senator Anne Rabbitte, recipient of the FASD Champion 2025 Award, delivered a powerful address, stating: “FASD remains largely invisible in national health and education policies, with no dedicated data collection, diagnostic pathways or specialised services currently in place.”

She highlighted the systemic neglect faced by families: “Professionals across healthcare, education and social services are unequipped to recognise or manage the complexities of the condition.”

The consequences of this neglect are severe: “Individuals with FASD are significantly overrepresented in statistics on homelessness, addiction, mental health crisis and youth suicide, yet their needs remain overlooked.”

Urgent Action Required

Senator Rabbitte described the RCSI report as a “brilliantly important” piece of research, calling for:

• FASD-specific training across healthcare, education, and social care sectors

• The development of clear diagnostic and support frameworks

• The establishment of dedicated services for assessment, treatment, and lifelong support

“Without these measures, Ireland will continue to fail a population living with a preventable but profoundly misunderstood disability.” She issued a strong call to leadership: “There is a responsibility within government and across sectors to understand. Silence is condonance.”

And reaffirmed her commitment: “I will continue to champion this… to deliver that awareness campaign and provide direct support for those living with FASD.”

Prevention, Awareness, and Inclusion

The event also focused on prevention, with new research highlighting the role of both parents in avoiding prenatal alcohol exposure. Senator Rabbitte stressed the importance of early diagnosis and intervention, and the need to educate healthcare professionals to ensure better outcomes.

Buildings across Ireland—including Leinster House, and FASD Ireland’s headquarters—were lit up in red, symbolising solidarity and awareness.

Voices of Experience

The evening concluded with a heartfelt moment as Jacob Casson-Rennie, a young adult living with FASD and a student at the University of Galway, presented the FASD Champion Award to Senator Rabbitte. His presence and story served as a powerful reminder of the living experience behind the statistics.

“All people, especially children, deserve to thrive,” Senator Rabbitte said. “Today is a milestone, a day where research, advocacy and policy come together to deliver the kinds of supports families have long been calling for.”

She closed by thanking all those involved, including the RCSI team, Professor Jolanta Burke, Angela Harper, Professor Faharna Shariff, and the FASD Ireland team:

“Our work is already making a difference, and I have no doubt it will shape a better future for so many families.”

Download your copy of the research

Ennis Young Adult With FASD Hails Impact Of Increased Awareness

Wed, 20 Aug 2025 12:06:54 GMT

Ennis Young Adult With FASD Hails Impact Of Increased Awareness

A young adult from Ennis living with FASD claims increased awareness of the disorder has allowed him to greatly develop throughout his life.

Foetal Alcohol Spectrum Disorder is a condition developed during pregnancy caused by exposure to alcohol and can effect memory and learning.

FASD Ireland, who are based in Ennis, will hold an awareness event in the Buttermarket on September 9th and Director of Operations & Deputy CEO, Scott Casson Rennie’s adopted son Jacob lives with the condition.

Jacob has been telling Clare FM’s Morning Focus that growing up proved challenging without access to the level of support in place today.

Listen back here

Find out more about our event and book here

Irish Government bottle it on alcohol labelling

Thu, 24 Jul 2025 09:20:59 GMT

FASD Ireland notes with concern the Cabinet’s decision yesterday to defer the implementation of health information labelling on alcohol products until 2028.

FASD Ireland notes with concern the Cabinet’s decision yesterday to defer the implementation of health information labelling on alcohol products until 2028. This measure, originally a key provision of the Public Health (Alcohol) Act 2018 and a central recommendation in the HSE’s 2022 Position Paper on the Prevention of Foetal Alcohol Spectrum Disorders (FASD), was due to come into effect in May 2026.

Speaking from FASD Ireland’s Headquarters in Ennis, Co. Clare, Director of Policy and Public Affairs, Mike Taylor said:

“This decision represents a significant setback for public health in Ireland. The delay undermines years of progress and consensus on the importance of providing clear, evidence-based information to consumers about the risks associated with alcohol, particularly during pregnancy.

The HSE Alcohol Programme have worked tirelessly on alcohol labelling in collaboration with many actors in the health and advocacy sphere and we are deeply sorry to see that work, particularly as identified in the Position Paper on FASD Prevention, now kicked to touch in favour of siding with blatant disinformation from the alcohol industry by Government.

“FASD Ireland, alongside over 80 public health and advocacy organisations, has actively engaged with members of the Oireachtas in recent months to support the timely implementation of alcohol labelling. Despite strong support from those who engaged with us, the Government has opted to postpone this critical measure.

“We are concerned that this reversal appears to have been influenced by misinformation regarding the potential impact of labelling on exports. It is important to clarify that the proposed labelling requirements apply only to alcohol products sold within Ireland and would not affect exports. Unfortunately, this distinction has been lost in the noise, in large part due to disinformation from the alcohol industry, and their PR and lobbying apparatuses.

Foetal Alcohol Spectrum Disorder (FASD) is a lifelong, irreversible neurodevelopmental condition caused by prenatal alcohol exposure. Ireland has the third highest estimated prevalence globally, with approximately 1 in 10 babies now being born in Ireland with FASD. Alcohol is a known teratogen that crosses the placenta and can affect foetal development.

“Our position has always been clear: people have the right to accurate information so they can make informed decisions, especially when it comes to alcohol and pregnancy. This delay risks prolonging public misunderstanding and may contribute to continued harm. Alcohol can harm a developing baby even before pregnancy is confirmed. That’s why no amount of alcohol by either parent is considered safe in the six weeks before conception, at conception, or throughout pregnancy.”

FASD Ireland urges the Government to reconsider this decision and to reaffirm its commitment to evidence-based public health policy.

ENDS

First National Foetal Alcohol Spectrum Disorder (FASD) Conference held

Tue, 10 Jun 2025 11:38:09 GMT

First National Foetal Alcohol Spectrum Disorder (FASD) Conference held

HOTEL Woodstock in Ennis was the setting for the inaugural FASD Ireland National Conference last Thursday, 22nd May. The conference titled ‘FASD in Ireland’ was organised by the Ennis based FASD Ireland – the national

organisation supporting people living with Foetal Alcohol Spectrum Disorder, their families/caregivers and supportive professionals.

The conference, which was attended by people living with FASD and their families, as well as professionals from Education, Health and Social Care and Criminal Justice backgrounds heard from a wide variety of keynote speakers and expert panels.

Dr. Aisling Sheahan, HSE National Lead for Alcohol, Mental Health and Wellbeing gave a brief overview of previous public health campaigns around alcohol and pregnancy. She reiterated the HSE advice that no amount of alcohol is safe during pregnancy.
Prof. Raja Mukherjee MBE, a Consultant Psychiatrist working as the clinical lead for Adult NDD & FASD at the UK’s National FASD Clinic, gave an overview of the diagnostic process and how people with FASD need to have the same access to diagnosis and specialist services such as those with autism and ADHD. Prof. Mukherjee outlined that he did not accept the country’s current position on the lack of standard diagnostic regime said; “If you had a patient in front of you with the clear markers of Down Syndrome, you would not refuse to diagnose them. FASD should be no different”.
Prof. Jolanta Burke of the RCSI Centre for Positive Health Sciences shared some of the early findings from her ongoing research on theexperiences of being a carer of a person living with FASD. She revealed that 25% of carers surveyed reported that they found FASD Ireland support groups useful, while a further 25% felt that that they had no resources for supporting or obtaining diagnosis of FASD.
Prof. Farhana Sharif, Consultant Paediatrician supported Prof. Mukherjee’s assessment that it is unacceptable that Ireland does not have standard criteria for diagnosis and support and ran through some possible interventions that healthcare professionals could make to support people who are suspected of living with FASD in their care while we await for a diagnostic regime to be implemented.
Dr. Denis Lamblin, CEO of SAFFrance, a French-based FASD prevention organisation also gave a presentation on the successful work that they are doing in France to reduce the prevalence of FASD through school seminars, partnerships with bars and restaurants, and public awareness campaigns on alcohol and pregnancy.

Speaking following the event, Scott Casson-Rennie and Cillian Flynn, the co-convenors of the conference said; “It was an absolute honour to be asked to organise the FASD Ireland’s first conference. We have both had experience of organising these types of events in the past, however, each event is always different.”

“We were blown away by the day itself and have subsequently been blown away by the feedback we have received since. Whilst we return to our day jobs, we are also beginning to think about next year, and we look forward to ensuring that the conference in 2026 exceeds the impact of 2025.”

CEO of FASD Ireland, Tristan Casson-Rennie added, "I’m absolutely delighted with the success of our first conference. It was clear from the engagement on the day that there is a strong and growing appetite within

the community for greater support from the State in addressing FASD. We were truly bolstered by the overwhelming support shown for the work we do. Support that encourages us to continue making a meaningful difference in the lives of families through expert advice and ongoing care.

What came through loud and clear from medical and academic professionals alike is the urgent need for standardised criteria for diagnosis and a consistent, accessible framework of support systems. It’s now more

evident than ever that national implementation of these measures is essential if we are to ensure that no one affected by FASD is left behind."

Sam Gardiner RIP (2002 - 2025)

Mon, 09 Jun 2025 12:04:04 GMT

Sam Gardiner RIP (2002 - 2025)

FASD Ireland, the national organisation for people living with Foetal Alcohol Spectrum Disorder (FASD), their families/caregivers and supportive professionals are sending solidarity to their sister organisation in the UK, National FASD and to the family of Sam Gardiner, following his untimely passing on 29th May.

Gardiner, who was a contestant on BBC’s ‘Race Across the World’ in 2020, died from his injuries following a car accident on May 29th. He was 24.

Speaking from their Head Office in Ennis, CEO of FASD Ireland, Tristan Casson-Rennie said; “on behalf of all here at FASD Ireland, I want to extend our sincere condolences to the family of Sam Gardiner. His parents Jo and Andrew, his

brothers William and Charlie, his stepmother Justine, and all who knew and loved him. I also want to send our solidarity to all in our sister organisation in the UK, National FASD.

Sam was an incredible role model within the FASD community, and although he has left this world far too soon, his sad passing has ignited a public conversation around FASD; the strengths possessed, and challenges faced by people living

with the condition. Sam showed us all how to dream big and to live in full colour. Ár dheis Dé go raibh a Anam dílis.”

Following his death, a JustGiving page has been set up in Sam’s honour. His mother, Jo said; “If some good comes of this tragedy, it will be that FASD is better understood”. FASD is a lifelong neurodevelopmental condition resulting from

prenatal alcohol exposure. It is the most prevalent neurodevelopmental condition in Ireland, yet FASD is not recognised by the State as a disability and there is currently no standard pathway to diagnosis or framework of support.

FASD Ireland operates FASD Hub Ireland, an expert advice and advocacy line for families living with FASD and professionals supporting them. It operates Monday to Friday 10am to 4pm and is available by calling 065 670 3098.

FASD Ireland response to Minister Butler's recent comments about ADHD and Autism

Tue, 15 Apr 2025 15:43:33 GMT

FASD Ireland response to Minister Butler's recent comments about ADHD and Autism

FASD Ireland fully understands the public anger that has been expressed toward the recent statements made by Minister of State for Mental Health and Older People, Mary Butler T.D. and publication of a book on issues pertaining to the prevalence of ADHD and Autism (ASD) by an individual.

We recognise that the Minister’s remarks without context are offensive to the neurodiverse community. ADHD is the most diagnosed co-morbid condition of Foetal Alcohol Spectrum Disorders (FASD), present in 70% of diagnosis, with autism presenting very similar symptoms to FASD, and co-occurring in around 1.5% of diagnosis of FASD.

We understand and appreciate how recent debate of the prevalence, diagnosis and even existence of ADHD and ASD can be deeply frustrating for the people who live with these two conditions. Those that have been campaigning for the last 20 years have made enormous strides in that time and we would never want to go back to an Ireland where people feel unseen and unsupported. For people living with FASD in Ireland, that experience of 20 years ago is our live reality today.

As members of an interconnected community of people living with neurodevelopmental conditions, we welcome public discussion at all levels about the barriers that people have faced in our society in the past and continue to contend with today. However, as the national organisation for the largest cohort of people living with a neurodevelopmental condition in this country, we are disappointed but not surprised to have been overlooked from this discussion.

FASD is the most prevalent neurodevelopmental condition in Ireland, yet there is no standard criteria for diagnosis for people living with the condition. There is no framework of support from state agencies, including CDNTs, CAMHs, Adult Mental Health Services, or the NCSE in education. The issue of underdiagnosis and misdiagnosis being discussed in the public domain is very welcome, however, for people who have no access to diagnosis, their living experience and the advocacy of their representative organisations are completely removed from this discussion; locked out of decision-making processes, there is no seat at the table where issues of concern to the FASD community are discussed at a State level.

Everyone living with neurodevelopmental conditions in this State should have access to supports and accommodations and we stand unequivocally in solidarity with our fellow neurodiverse community who have faced questioning of the validity or even existence of their conditions in recent days. However, for people living with FASD it is a not merely barriers to diagnosis or outdated protocols but diagnostic protocols that simply do not exist in this State. People living with FASD face every conceivable barrier in accessing supports and accommodations at home, school, further education, at work and throughout the life course.

FASD Ireland, people living with FASD, their parents or carers are all excluded from having a voice at the only HSE body that exists to discuss FASD, the Expert Advisory Group on FASD Prevention. There is not one single voice of anyone with living experience of FASD represented on the EAG.

Since the beginning of this Government term in January and subsequent to the appointment of Ministers, policy related to FASD which previously sat with then Minister of State for Disability, Anne Rabbitte, has no line Minister in Government and 28 Parliamentary Questions from a myriad of TDs who support our work have gone completely without answer.

From a day-to-day perspective, families who are crying out for support are left completely abandoned by this State and have only FASD Ireland to turn to. It is our privilege to support the FASD Community in this State every day in a fight for basic recognition, and we spend hours writing emails, policy papers, and submissions for one basic reason. FASD exists.

Through the work of FASD Hub Ireland, we work at the coalface of this dearth of service provision and what it means for families the length and breadth of this country. When there is nobody else for these families to turn to because of a lack of support and accommodation, we are there. And we will be there every day.

Silent epidemic of foetal alcohol spectrum disorder 'coming down the road at us fast and furiously'

Mon, 31 Mar 2025 20:43:28 GMT

Silent epidemic of FASD 'coming down the road at us fast and furiously'

The Government is being urged to recognise foetal alcohol spectrum disorder as a disability by a support group which warns it is a silent epidemic “coming down the road at us fast and furiously”.

In recent answers to parliamentary questions about the disorder, Minister of State with responsibility for disabilities, Hildegarde Naughton, said that FASD is not deemed a disability in Ireland and said responsibility for it falls under the Department of Health’s (DOH) Health and Wellbeing unit.

She added: “As a result, the services needed to address issues around FASD are primarily found within the remit of DOH (Department of Health). The DOH currently have the remit over the Expert Advisory Group on FASD directly relevant to the question posed by the Deputy, therefore this is a matter for the office of the Minister for Health.” However, in separate responses, Minister for Health Jennifer Carroll McNeill said that responsibility for the area lies with the Department of Disabilities Children and Youth Affairs.

According to figures published by the World Health Organisation in 2017, it is estimated that approximately 600 babies are born each year in Ireland with the syndrome. Ireland ranked third out of 187 countries for prevalence of FASD, behind South Africa and Croatia.

However, the HSE said in a briefing document in 2022 that the prevalence of FASD in Ireland is estimated at between 2.8% and 7.4% of the population. It added that the best available evidence estimates that about 600 Irish babies are born each year with Foetal Alcohol Syndrome, “with a further 9-10 times this number of babies born annually in Ireland who have other Fetal Alcohol Spectrum Disorders”.

It is also estimated that up to 380,000 people with FASD are currently living in Ireland.

Among the indicators of FASD are ADHD, low body weight, poor co-ordination, poor memory, attention difficulties, difficulties in school (particularly around maths), and learning disabilities.

Chief executive of FASD Ireland, Tristan Casson-Rennie, is calling on the government to take action on designating FASD as a disability.

Describing it as Ireland’s silent epidemic, Mr Casson-Rennie said: “It is coming down the road at us fast and furiously and we need to get supports in place to support everybody who lives with the condition.” He said that previous Minister for Disabilities, Anne Rabbitte, had been supportive but said this has not continued into the current government.

Mr Casson-Rennie said that while people with FASD are getting help from health and disability services for numerous reasons but not specifically for FASD.

He said: “For example, people will be getting diagnosed with a co-morbid condition of ADHD and getting support for ADHD but nobody is looking at what the primary cause is.” He continued: “We need to look at how we get all the departments to recognise FASD. This is not a single department’s responsibility. This is the responsibility of welfare, health, public health, disability, youth, and justice. All those departments need to recognise FASD.” “This government was elected on a ticket of support for people living with disabilities and this message that is coming out from both Hildegarde Naughton and Jennifer Carroll McNeill is that they are going to pick and choose which disabilities they will accept as a disability.” He said that the reply by Minister Naughton that Ireland does not recognise FASD as a disability is the first time that has been put on record by the government.

He described it “as shameful that Ireland does not recognise FASD when there is so much progressive work going on around the world.” He said up to 3,000 calls have been received to the FASD national helpline in the two years since it was set up in April 2023.

Last year, Dr Mary O’Mahony, HSE Cork & Kerry, told the Irish Medical Organisation’s annual general meeting that evidence indicates that during 2021 some 526 babies were born in Ireland who were clearly affected by FASD.

You can read the original article by Ann Murphy on the Irish Examiner website .

BLOG POST: 9TH INTERNATIONAL RESEARCH CONFERENCE - SEATTLE, WA

Mon, 31 Mar 2025 15:32:38 GMT

BLOG POST: 9th International Research Conference - Seattle, WA

In this Blog post - our Policy & Research Coordinator, Rob O'Connell shares his experience of attending the event.

I was privileged to attend the 9th International Research Conference on Foetal Alcohol Spectrum Disorders, Research, Results and Relevance: Integrating research, Policy, and Promising Practice Around the World. The conference was held at the Hyatt Regency hotel in Seattle, Washington, U.S.

The conference was attended by over 300 guests, including; Researchers, Health Care Professionals, FASD Experts, Parents/Care Givers and of course Self Advocates/Advocates of people living with FASD. For my first time in America, it was certainly a whirlwind of a week! I went to this conference which was in fact my second specifically about FASD.

I was just as excited as 2 years ago when I attended the Salford Conference. My plan was to learn as much as possible to bring back to the team and share the knowledge with the team which we could then use with FASD Ireland and support people with FASD living in Ireland.

The conference ran over five days, and proved to be invaluable to us as an organisation, with so many networking opportunities I had the pleasure of speaking with so many hardworking and interesting people who all play such a vital role in the global FASD community.

The week 'started' in the middle of the week! With session on Wednesday 19th March and the theme 'FASD and the Justice System'. Key takeaways from the morning session include:

Testing for Executive and Adaptive Functioning is much more important than testing for IQ as we know people with FASD can have quite a high IQ but dysfunction in the domains of Executive and Adaptive Functioning can result in “the perfect storm” for committing an offence.
Brain Imaging and highlighting the extent of damage alcohol exposure causes to the brain is being used as hard evidence in U.S. courts.
Canada have created an FASD Court , which is providing diagnosis for youths prior to sentencing resulting in a full assessment of the child and more suitable sentencing being put in place that suits the needs of the person instead of “setting the person up to fail”. The court has found success from being non-judgemental, taking the birth mother being affected too into account and also having an understanding the issues facing those who support the youth.

Key takeaways from the afternoon session include:

Neuropsychological testing is to be the first step in diagnosis.
Adaptive assessment is critically important, assess if the person being assessed can do it independently without any prompting or questions.
In supporting the child the environment around the child has to change not the person.
Professionals working in defence have capped the age 25 and under as being a “youth” due to this being the age a neurotypical brain will generally have matured by.
In the case of FASD, age does not matter Suggestibility and gullibility can occur.
People with FASD can have a “Cloak of Competence” coming from an ability to mask and learn from other people. However even though this is the case there is a lack of an in-depth understanding of risk awareness and poor social intelligence.

On Thursday 20th March we attended the pre-conference day on Navigating Stigma with Experiences and Evidence: Moving from Discussion to Action. Thursday was all about stigma! It was an interactive day with lots of group discussion work which was also really valuable to network and get to know people! We talked about the strengths of people with FASD including perseverance, connection and empathy as well as how the dominating message in the U.S. around FASD is dehumanising so we need to look for what people with FASD can do not at the deficits.

In the group sessions, we were asked to brainstorm in groups actions that we could each take to tackle stigma around FASD at the Individual, General Public and Systemic levels. We compared what had worked well in other stigmatised conditions like HIV/AIDS and suicide and how they helped to raise awareness globally and subsequently destigmatise these areas that were once so heavily stigmatised.

Friday 21st March was the first full day of the Research Conference, the days was still reflecting on the previous day in that much of the research being presented and that has been completed is further destigmatising FASD due to creating a better understanding and raining a higher level awareness of the condition in all areas of society from the professionals who diagnose the condition to the people who support those living with FASD to those living with FASD. The next 3 days were each divided into plenary session and breakout sessions with such advanced and valuable information being shared including:

A full breakout session the advancements Victoria and New South Wales, Australia have made in providing diagnosis and aftercare for people with FASD in their FASD Clinics as well as the impressive progress that has been made by the Australian Government through policy change and support.
FASD and Autism was an interesting topic discussed and how the needs of the children can be comparable in some contexts but there is a need for ASD and FASD specialists to be cross trained to fully understand the differences between both.
There were some really moving talks over the weekend from people with direct experience of either living with or caring for somebody with FASD. Friday afternoon opened up a can of worms as Carl Young spoke about his struggle with various conditions at mid-life due to his PAE.
Finishing with a brief overview of the international perspective on what is going on in Mexico, Poland and Kenya in relation to FASD. It was really interesting to hear from these different perspectives and to get a better understanding of what is going on in other countries other than Ireland, and other English speaking countries who, let’s face it, are a lot more ahead of us! But one thing is for sure, we ARE all or HAVE all faced the same difficulties on our journeys.

Saturday 22nd March was all about research! My favourite! It included an overview of some of the recently Collaborative initiative on Foetal Alcohol Spectrum Disorders ( CIFASD ) research projects. These projects are international with researchers from all over the world working on them but most of the research is coming out of the U.S. and Canada. CIFASD has over 400 publications and some of the research discussed included:

Cellular and molecular mechanisms underlying alcohol-induced congenital heart defects in a zebrafish model from Olivia Weeks.
microRNAs as biomarkers of exposure and risk for neurodevelopmental outcomes from Amanda H. Mahnke
Effects of prenatal alcohol exposure on self-report of medical illness later in life from Claire D. Coles
Using novel brain imaging tools to better understand development in youth with FASD.
BRAIN-online: An online assessment of cognition and behaviour in FASD from Sarah Mattson
Using 3D imaging to identify FASD-associated facial dysmorphism across the lifespan from Michael Suttie
Comparison of methods for physical evaluation of dysmorphology in FASD from Miguel del Campo.
Combined transcranial direct current stimulation and cognitive training as an intervention for children and adolescents with FASD from Jeffrey Wozniak.
Extending access to care for people with FASD across the lifespan using smartphone and web applications from Christie L. M. Petrenko and Christian Tapparello.

Saturday’s lunch was spent listening to SAF France give a presentation on How to change legislation to make the fight against FASD a National Public Priority by French MP Perceval Gaillard and SAF France (the French organisation for FASD).

The afternoon was spent listening to more valuable information on the specialists experiences of FASD clinics in relation to Speech and Language Therapy, Assessment tools and how the clinic can work with the government. I also attended an interesting session on the Genetics associated with FASD.

The last and final day, Sunday 23rd March was probably one of the interesting talks I have ever been at, Paternal drinking and the epigenetic influences on mitochondrial function, child health, and FASD by Michael C. Golding. His research considers the paternal contributions to health outcomes of the child but not just through alcohol exposure but to everything including other substances, stress and diet. Essentially how the environment of the father will result in positive or negative outcomes post conception and as a general thought;

Physically and Mentally Healthy Parents = Physically and Mentally Healthy Children.

I also attended a session given by some parents and carer’s of children living with FASD and it was quite insightful to have their experiences shared. There was also a crew from University of Salford who attended, with Dr Alan Price presenting the Salford parents and carers education course called SPECIFIC .

The day finished with some more interesting chat about the difficulties people with FASD can go through as well as the interesting research being done, modifiable lifestyle factors to support neurodevelopment in individuals with FASD. And last but not least the famous Starfish awards were presented with Leanna from South Africa taking home the prize thanks to some very inspiring work she has been doing in South Africa for quite some time as a paediatrician in an FASD clinic in South Africa!

The conference went super and I really enjoyed it! the days were long but there was so much valuable information learned and we met so many amazing people. The professionalism from all the staff at FASD United is also worth a shoutout and may put us under a bit of pressure to perform to their standards on 22nd May in our first FASD Conference .

OVER 9,000 PEOPLE ESTIMATED TO BE LIVING IN CLARE WITH UNDIAGNOSED FASD

Tue, 11 Mar 2025 12:05:50 GMT

Clare County Council has heard calls for training on recognising FASD to be included in the curriculum for third level education.

CLARE FM - 11 March 2025

Clare County Council has heard calls for training on recognising FASD to be included in the curriculum for third level education. Upwards of 9,000 people are thought to be currently living with the disorder in Clare, despite not receiving a full diagnosis of the condition.

7.4% of the Irish population are estimated to be living with FASD, this equates to approximately 380,000 people across the country with 9,467 of those residing in Clare. Given at least one child in every mainstream classroom will live with the condition, calls have been made to ensure a module on neurological disorders is delivered as part of teacher training.

Director of Policy and Public Affairs at Ennis based FASD Ireland, Mike Taylor, claims the government to this point has failed to support those affected.

At present, Ireland is the only country in Europe which doesn’t acknowledge FASD as a disability. The disorder is the most prevalent Nuero-developmental disability and affects a greater number of people than autism, cerebral palsy and down syndrome combined.

CEO Tristan Casson-Rennie, claims there is a misconception within government that hospitals will be overwhelmed should the condition be officially recognised .

Four Clare councillors currently sit on the HSE Regional Health Forum West, while a number of others hold positions on school boards.

Shannon Banks Sinn Féin Councillor, James Ryan, says Clare holds a unique position from which it can incite change.

Full interviews with Tristan Casson-Rennie, Mike Taylor and Councillor Jame Ryan available from Clare FM below.

Tristan Casson-Rennie, CEO FASD Ireland speaks to Clare FM

Mike Taylor, Director of Policy & Public Affairs FASD Ireland speaks to Clare FM

Councillor James Ryan (SF) speaks to Clare FM

CORK EAST TD RAISES NEED FOR DIAGNOSIS AND SUPPORT FOR PEOPLE LIVING WITH FASD IN DÁIL

Thu, 27 Feb 2025 16:22:40 GMT

CORK EAST TD RAISES NEED FOR DIAGNOSIS AND SUPPORT

 FOR PEOPLE LIVING WITH FASD IN DÁIL

CORK East Social Democrats’ TD Liam Quaide has this week raised the need for Government to recognise Foetal Alcohol Spectrum Disorder (FASD) as a disability and to progress with standard criteria for diagnosis and support for people living with the condition.

Addressing the Dáil on Tuesday evening’s statements on disability, Deputy Quaide told the House; “I want to mention the importance of recognising Foetal Alcohol Spectrum Disorder as a disability and to progress with standard criteria for diagnosis and supports. Foetal Alcohol Spectrum Disorders are estimated to affect up to 7.4% of the population and are associated with lasting physical, mental, educational, social and behavioural difficulties. They are a serious neurodevelopmental condition and there is a great deal of work to be done in prevention, diagnosis, treatment and supports.”

Deputy Quaide, who is filling in for Party Leader, Deputy Holly Cairns, as Disability spokesperson during her maternity leave, concluded by saying; “The former Minister of State for Disability, Anne Rabbitte, committed to supporting the aims of FASD Ireland and I hope that the current Government will honour that.

Speaking from their Head Office in Clare, Mike Taylor, Director of Policy & Public Affairs at FASD Ireland said; “We are very grateful to Deputy Quaide and to the Social Democrats for highlighting the need to progress with the recognition of FASD as a disability and to put in place standard criteria for diagnosis and support. FASD is the most prevalent neurodevelopmental condition in this country, which the HSE estimates that roughly 6,000 babies a year are born with. Despite this incredibly high prevalence, the State has consistently failed people with FASD and their families in the past by failing to provide diagnosis and support. FASD Ireland are here to take the fight for recognition for people living with FASD and their families and we are very grateful to have the support of elected representatives like Deputy Quaide and his Party to achieve the recognition of FASD as a disability and progressing with standard criteria for diagnosis and support. As the Deputy pointed out in his contribution, we engage constructively with Government and look forward to meeting with the new Minister for State for Disability, Hildegarde Naughton, in the near future.

“For far too long, people living with this extremely prevalent condition have had no access to necessary supports in order to have the best quality of life that they can have and I’m sure as a clinical psychologist for many years, Deputy Quaide would have seen this in his own practice, just like the many educational, health and social care professionals that have contacted us for support since FASD Ireland was set up in 2021.

For anyone living with FASD, their families, caregivers or professionals dealing with people living with this condition, FASD Ireland is here to support you and provide advocacy on your behalf. Our confidential phone support service is available at 065 670 3098 Monday to Friday from 10am to 4pm and information is available on our website located at www.fasdireland.ie”.

FASD Ireland - Statement on the Incoming Government

Wed, 22 Jan 2025 16:22:36 GMT

FASD Ireland Statement on the Incoming Government

NEW GOVERNMENT MISSES THE MARK WITH RECOGNISING IRELAND’S MOST PREVALENT NEURODEVELOPMENTAL CONDITION AS A DISABILITY – BUT THE DOOR IS LEFT OPEN

FASD IRELAND, the national organisation supporting people living with Foetal Alcohol Spectrum Disorder (FASD) and their families has congratulated incoming Taoiseach Mícheál Martin T.D., and incoming Tánaiste Simon Harris T.D.

“We would like to warmly congratulate An Taoiseach, An Tánaiste and their Government as they take office today. We have worked closely with our allies in Government and in Opposition in the previous Dáil and we look forward to working closely with the allies across this new Dáil to recognise, diagnose, and support people living with FASD, which is Ireland’s most prevalent neurodevelopmental condition. We will write to the Taoiseach, incoming Ministers for Health, Disability & Children, Justice & Domestic Affairs, and Education in the coming days to seek meetings that will progress public policy related to FASD and we look very forward to building positive and engaging relationships going forward.

“It is unfortunate and regrettable that no concrete commitments were set out in this Programme for Government to recognise FASD as a disability and to move forward with adopting standard criteria for diagnosis and support of FASD. As people may be aware, FASD is Ireland’s most prevalent neurodevelopmental condition. The HSE estimated in 2022 that up to 7.4% of our population live with FASD, which is just over 380,000 people. During the Programme for Government negotiations, FASD Ireland engaged with every single negotiator on our key asks for the Programme for Government, so it is disappointing not to see any strong commitments made to continue the tremendous work of Minister Anne Rabbitte in recognising FASD and introducing standard criteria for diagnosis and support.

“Nevertheless, we are hopeful, and we welcome a number of measures proposed. We believe that plans to regulate CAMHS is absolutely the right thing to do. The independent governance of CAMHS teams is an unacceptable practice that must be ended, and CAMHs must be brought in line with the rest of the Health Service to accept appropriate referrals and support service users for the conditions that they live with. We also strongly welcome the full implementation of the EPSEN Act, and we hope that the incoming Minister for Education and Minister for Children will work closely with ourselves and other key stakeholders to ensure that every child is supported, and none are failed by the system, to keep them in education and ensure that their additional needs are fully met.

“We welcome the strides made on better supporting people with disabilities throughout the State. However, as FASD is not a recognised disability, many of these proposed measures are completely inaccessible for people living with FASD. We need the Government to formally recognise FASD as a disability, which we call on them to do as a matter of priority.

“We also strongly welcome the Government’s commitment to continually review the number of conditions babies are screened for. Despite the fact that 1 in 10 babies are born with a form of FASD in this country, according to the HSE, there is no routine screening for the condition at any stage from birth to adulthood. FASD affects our country cross-sectionally, and we firmly believe that all babies born in the State should be screened for Foetal Alcohol Syndrome (FAS), and for wider prenatal alcohol exposure. In the range of tests a newborn baby currently receives, we screen for MSUD, a condition that affects 1 in every 155,200 babies, yet we don’t screen for FAS, which the HSE states approximately 600 babies are born with every year. This needs to change and the HSE need to include FAS as a condition that they screen for during the neonatal battery of tests.

“Despite its shortcomings, we acknowledge the good faith with which this Programme is presented, and we look forward to working with the incoming Government to proceed with the recognition of FASD as a disability and the adoption of a standard criteria for diagnosis and support.”

Lobbying 2024 wrapped

Sun, 29 Dec 2024 16:04:56 GMT

As we celebrate the New Year, we thought it would be good to look back on 2024.

As we celebrate the New Year, we thought it would be good to look back on 2024, particularly our engagement with Deputies, Senators and Ministers. We have produced this short video review of our lobbying during the year.

We look forward to meeting with new Deputies, Senators and Ministers when the new Government is announced in early 2025.

Our sincere thanks to everyone who took the time to meet with us throughout the year, and supporting us in our work to champion people living with FASD.

Avoid the risk of FASD to your baby over the holiday season

Tue, 10 Dec 2024 14:55:56 GMT

Avoid the risk of FASD to your baby over the Holiday season.

FASD Ireland , the national organisation based in Ennis, County Clare, supporting people and their families living with Foetal Alcohol Spectrum Disorder, have launched their 2024 Christmas and New Year campaign.

The HSE currently estimates that up to 7.4% of the population live with FASD which is associated with a range of lifelong physical, mental, educational, social, and behavioural difficulties. FASD is Ireland’s most prevalent and only preventable, neuro-developmental disability. FASD is Ireland’s silent epidemic, affecting one in ten babies born today.

FASD Ireland wants everyone to enjoy the holiday season, however, please to avoid the risk of FASD to your baby, please remember that NO amount of alcohol is safe to drink in the six weeks before conception or at any time during pregnancy.

Tristan Casson-Rennie, CEO of FASD Ireland said, “Ireland has a an alarmingly high prevalence of Foetal Alcohol Spectrum Disorder. In the past it would have been considered acceptable to drink a glass of Stout or a Brandy – it would even have been deemed safe for Mum and Baby. However, we know today from scientific research that prenatal alcoholexposure can cause irreversable life long brain damage and other challenges in a developing baby.”

He continued, “Launching our Christmas and New Year campaign provides essential information to anyone who may be thinking about starting a family over the festivities. It is important that everyone knows about the risks associated with just one alcoholic drink if they are planning to have a baby. Alcohol and pregnancy never go together.”

You can find out more about Foetal Alcohol Spectrum Disorder and FASD Ireland at www.fasdireland.ie. You can also get free and confidental help and support from FASD Hub Ireland Monday to Friday 10am until 4pm – 065 670 3098 or online: www.fasdhub.ie

Leinster House goes red for World FASD Awareness Day 2024

Tue, 10 Sep 2024 11:10:00 GMT

World FASD Awareness Day 2024 coverage - Leinster House lights up red to support people living with FASD

CEANN Comhairle, Deputy Seán Ó Fearghaill and Cathaoirleach of Seanad Éireann, Senator Jerry Buttimer will illuminate the Kildare Street façade of Leinster House this coming Monday, 9th September to mark World FASD Awareness Day 2024. Foetal Alcohol Spectrum Disorder (FASD) is a lifelong neurodevelopmental disability that occurs as a result of prenatal alcohol exposure.

CEO of FASD Ireland, Tristan Casson-Rennie commended the move, saying; “FASD is Ireland’s most prevalent neurodevelopmental disorder, and it is long beyond time that the State starts to recognise the significant epidemiology of FASD in Irish society. We have learned from replies by the HSE to recent Parliamentary Questions that they estimate one in every ten babies born in Ireland today will live with FASD, with a tenth of those born with the most severe form of FASD, requiring lifelong support and care. We must start a national conversation about FASD in Ireland and the harms of prenatal alcohol exposure. Every year that ticks by where we as a State are failing to discuss FASD openly and honestly is another year that approximately 380,000 people who live with FASD in Ireland and their families continue to go without support. It is vital that everybody who works in health and social care, and education settings in particular get trained up on FASD, how it effects the people who live with it, and what management strategies and accommodations can be put in place to make schools, hospitals and everywhere in between more FASD inclusive. We all have a part to play when it comes to FASD, for our part, FASD Ireland provides free education to all teachers, SNAs and SENCOs who are working within our education system, and we offer a myriad of training to the HSE, CAMHS, TUSLA, the NCSE, An Garda Síochána and other agencies of the State as well as the private sector. We support the families of people living with FASD through our non-judgemental peer support telephone line and through in-person and online follow-up sessions. FASD Ireland provides advice and support to those families where no State agency can or will, and a listening ear after many doors have been repeatedly shut in their faces. To that end, we then fiercely advocate for those families with legislators and key decision makers, speaking truth to power in the halls of Leinster House.”

He continued; “Ireland currently has no statutory diagnostic criteria, no diagnostic pathway, and no recognition of FASD as a disability. It is Ireland’s silent epidemic.”

Commenting further on the move to mark the occasion, Mike Taylor, Director of Policy & Public Affairs at FASD Ireland said; “this represents the first time that the Houses of the Oireachtas have recognised World FASD Awareness Day, which is very fitting given that this is the first year a national organisation with an FASD remit has been State funded.

FASD Ireland received funding of €200,000 this year from the Minister of State for Disability, Anne Rabbitte TD. We are seeking to increase that funding to €1.2 Million next year, which we have included in our Pre-Budget Submission, which was launched recently. Our Pre-Budget Submission also calls for investment into indigenous research into FASD in Ireland by the Centre for Autism & Neurodevelopmental Research (ICAN) at the University of Galway and for a national FASD awareness programme to be piloted to all Transition Year cohorts at every secondary school, with a view to rolling out training across the school system over the coming years. We’re aware that all of these things cost money to do. The total cost of our Pre-Budget Submission would come to just under €1.4 Million, however we propose to make this cost neutral by calling on the Government to establish a ringfenced Alcohol Related Harm Fund, funded through a levy imposed of 1% on-trade and 2% off-trade on the existing VAT paid on alcohol by the consumer.

Taylor went on to explain; “The levy as we have proposed it would ringfence around €80,000,000 a year from the existing alcohol tax-take by the exchequer. It would fully fund several alcohol related harm services like FASD Ireland, cancer services, addiction support, and various medical services. This alcohol levy is a cost recovery mechanism. The high expense of issues linked to alcohol makes it very important to identify areas for initiatives in harm reduction and support. The introduction of the levy can mobilise the concept of harm as a lever to involve the alcohol industry in efforts to reduce the harm from the use of its product. When a product such as alcohol causes harm that impacts large swathes of the population (estimated 2.8% -7.4% of Ireland living with FASD) its critical to consider accountability of the industry for adverse health outcomes. According to the Alcohol Market Review from the Health Research Board in 2022, the societal cost of alcohol use estimates range from €2.4bn to €3.7bn per year.”

Clare FM interview - FASD Awareness Day 2024

Mon, 09 Sep 2024 10:53:05 GMT

Morning Focus with Alan Morrissey - Alan interviewed our CEO Tristan on World FASD Awareness Day 2024

Temporary suspension of FASD Ireland services

Fri, 02 Aug 2024 13:03:02 GMT

Temporary suspension of FASD Ireland services

Statement from FASD Ireland CLG - Friday 2nd August 2024

Friday 2nd August is a very sad day for FASD Ireland as we are forced to suspend services that support people living with FASD across Ireland.

We hope to resume our services as soon as the allocated funding is released.

We would like to sincerely thank all Service Users, Members of the Public, Oireachtas Members and Stakeholders for your kind ongoing support at this time. We are particularly grateful to have the unwavering commitment of Minister of State for Disability, Anne Rabbitte TD.

Our website continues to be available for advice and signposting: www.fasdireland.ie

For any enquiries - please contact office@fasdireland.ie

Tristan Casson-Rennie
Chief Executive Officer
FASD Ireland CLG

Our reaction to the recent report of the Inspectorate of the Department of Education

Wed, 26 Jun 2024 11:39:08 GMT

FASD Ireland reacts to the thematic report of the Inspectorate of the Department of Education on early intervention classes for children with autism

The Inspectorate of the Department of Education have published a thematic report on provision in early intervention classes for children with autism. The report draws on findings from inspection visits to fifteen early intervention classes conducted between September and December 2023.

Overall, inspectors found that the quality of provision in early intervention classes is generally good. Many of the schools supported the children well and most teachers prepared very appropriate learning activities based on the children’s interests, strengths and needs. Almost all schools had good systems in place to help the children feel safe, connected and supported, and many teachers used autism-specific assessment and teaching approaches and had a strong commitment to professional learning in autism.

Reacting to the report’s publication, Mike Taylor, Director of Policy & Public Affairs at FASD Ireland said; “We very much welcome and celebrate the successes of the early intervention programme for children with autism and we are very happy to see that on the whole, educators working in these settings are catering specifically to the needs of children with autism and ensuring that the curriculum fits around the child, and not the other way around. Any step toward a more child-centred approach to teaching and learning is to be celebrated.”

He continued; “I want to especially welcome recommendations around the need for a clearer vision for an inclusive education system. According to figures from the HSE, the prevalence of Foetal Alcohol Spectrum Disorder (FASD) in Ireland is up to 7.4% meaning that for every class of 30 children in Ireland, 2 of those children are living with FASD. On a wider scale, that means a school of 300 children would have around 22 children who are living with FASD. Recent research from Dr. Katy Tobin at Trinity College Dublin has found that 25% of children with a diagnosis of FASD are falling through the cracks, unsupported and leaving education before they reach 14 years of age. With the right support provided by an inclusive and child-centred education system, these children will have the appropriate scaffolding in place to complete their education, with the potential to go forward after leaving education to live independently within the limits of their disability.”

Taylor concluded; “We are very keen to engage with this restructured and expanded NCSE to ensure that no student in Ireland with FASD or any other neurodevelopmental disorder falls behind. We look forward to engaging with the Minister for Special Education and Inclusion and cabinet colleagues as we seek to build a cross-departmental programme of work to support people living with FASD, their families, carers, and supportive professionals. The Taoiseach has recently established a Cabinet subcommittee on Disability, and we believe that this could be a powerful vehicle for necessary disability policy change in this country. We are engaging with families on a daily basis through our FASD Hub Ireland support and advice line who tell us exactly what changes are needed and we are committed to working with key stakeholders on all sides to make those changes a reality.”

Mike Taylor joins the FASD Ireland Team

Wed, 01 May 2024 23:00:00 GMT

Mike Taylor joins the FASD Ireland team as Director of Policy and Public Affairs

FASD Ireland are delighted to announce the appointment of Mike Taylor as the Director of Policy & Public Affairs. Mike's appointment comes following an 18-month period working in the Oireachtas as a Parliamentary Assistant. Mike is from Kilkee and studied Law with Political & Sociological Science at NUI Galway, where he served as President of the Law Society there. He is currently undertaking a Diploma in PR & Communications from UCD.

Commenting on his appointment, Mike said; "I am delighted to join the fantastic team here at FASD Ireland. Having spent the last number of months on their Advisory Board, I am looking very much forward to the exciting challenge of working on our core aims with the team here. Foetal Alcohol Spectrum Disorder (FASD) is Ireland's most prevalent neurodevelopmental disorder. We have the third highest prevalence of FASD in the world, and the HSE estimate that up to 7.4% of the population are living with FASD in the Republic of Ireland - whether they are aware of it or not.

"Despite all of these facts, there is no statutory diagnostic criteria and no diagnostic pathway, and most crucially no support provided by the State for people living with FASD. This significant gap in service provision is where we come in. FASD Ireland provides education, awareness and support, we also deliver advocacy on behalf of the FASD community in Ireland to key decision makers in areas of Government and public policy.

In his new role, Mike will lead efforts to shape policy agendas, engage with policymakers, and advocate for evidence based whole-of-Government solutions to address the challenges faced by individuals living with FASD. He will also oversee public affairs strategies to raise awareness and promote education about FASD, and work with the FASD Ireland team to drive systemic policy change for people living with FASD.”

Speaking about Mike’s appointment, Tristan Casson-Rennie, CEO of FASD Ireland said; “I'm thrilled to welcome Mike Taylor to the FASD Ireland Team in Ennis. Mike brings his expertise and political insight to our organisation. With his dedication and skills, we look forward to advancing our work in advocating for and supporting people living with FASD."

As well as his role in FASD Ireland, Mike also sits as a Director on the Board of Clare Local Development Company and serves as a Peace Commissioner for County Clare. On a local level, he also sits on the Board of Raidío Corca Baiscinn and is a member of the Enabling Team of Loop Head Together. A former Local Election candidate, Mike has far-reaching connections in politics in Ireland going as far as Taoiseach, Simon Harris, who has recently been invited to meet the FASD Ireland team at their office at 51 O’Connell Street in Ennis.

FASD Ireland awarded €220,000 in funding for expansion of its national support hub

Fri, 19 Apr 2024 14:20:14 GMT

National social enterprise FASD Ireland awarded €200,000 in funding for expansion of its national support hub

Ennis-based FASD Ireland, the country’s first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD), is to be awarded €200,000 in funding.

The announcement was made by Minister for Disability Anne Rabbitte during a Dáil debate on 17th April. Minister Rabbitte said: “Approximately €200,000 in funding will be awarded to the FASD Ireland in Clare for the national hub. I commend the work it has done in putting in place the telephone line and supporting families when there is such a deficit in Departments and the HSE in terms of taking on the mantle of providing support. I compliment the team in Clare on what it is doing. I am very supportive of it.”

Welcoming the announcement, CEO of FASD Ireland, Tristan Casson-Rennie, said: “I am delighted that Foetal Alcohol Spectrum Disorder has been discussed in detail in Dáil Éireann. FASD Ireland has some key asks of Government, importantly that FASD is recognised as a disability in Ireland as it is in the rest of the developed world, that the HSE develops statutory guidelines for diagnosis of FASD, and that supports are in place for people living with the condition.”

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

During the Dáil debate, Independent Clare TD, Violet-Anne Wynne sought confirmation that the condition will be given classification as a disability, as it is currently not, and confirmation of financial support for the organisation.

Deputy Wynne said: “Foetal alcohol spectrum disorder, known as FASD, is Ireland's silent epidemic and is caused by prenatal alcohol exposure. FASD is lifelong brain damage for which there is no cure or treatment and according to the Journal of the American Medical Association in 2017, Ireland has the third highest prevalence of people living with FASD in the world at 4.75%, behind Croatia at 5.3% and South Africa at 11.1%.”

Wynne continued, “Alarmingly, Ireland is the only country in the developed world that does not recognise FASD as a neurodevelopmental disability. The HSE does not currently have any statutory guidelines for diagnosis, there are no specialist clinicians or diagnosis pathway and few support services for people living with the condition.

Minister Rabbitte also confirmed that for now her Department will have responsibility for FASD policy, and recognised the urgent need for other departments within government to also share responsibilities for the condition.

The announcement comes only weeks after the first anniversary of the national FASD Hub opening in Ennis, providing support to over 800 people living with FASD, their parents, carers and professionals working with families.

Casson-Rennie continued, “With the confirmation of financial support from the Department we can continue our work to raise awareness of FASD and to provide support through FASD Hub Ireland, our national telephone helpline to people living with the condition, their families and professionals who work with them. We are overjoyed to receive this significant funding to provide our services through 2024, and look forward to a SLA being established for the years ahead. This money will allow us to develop our team and expand our headquarters in Ennis, County Clare. I would like to thank Minister Rabbitte for her continued support, and Deputy Violet Ann Wynne for submitting the Topical Question.”

FASD Ireland is a not for profit social enterprise based in Ennis, providing support nationally to people living with FASD, their parents, carers and professionals working with families. The FASD Hub is available to all Monday to Friday 10am until 4pm by phone 065 6703098 or online www.fasdhub.ie

ENDS

For further information on this press release, please contact Scott Casson-Rennie: scott@fasdireland.ie or 065 6703096

Full transcription of the debate can be found here: https://www.kildarestreet.com/debates/?id=2024-04-17a.20&s=FASD#g25

The full video recording of the debate can be found below.

FASD Hub Ireland® celebrated its first birthday

Wed, 27 Mar 2024 20:11:18 GMT

Time for celebration at FASD Ireland in Ennis

27th March 2024

With more than 800 enquiries in its first 12 months, FASD Hub Ireland® celebrated its first birthday on 27 ^th March, and this coincided with registered trademarks being granted for the service in Ireland and Northern Ireland.

Plans to launch a telephone helpline and operate a pilot were supported with funding from Social Entrepreneurs Ireland Awards Academy 2022 and Action Lab 2023 programmes. FASD Hub Ireland® launched in March 2023 providing confidential support, advice and signposting about Foetal Alcohol Spectrum Disorder (FASD) not previously available in Ireland. The telephone helpline and web-based service is available to help anyone living with FASD, their parents, carers and also any professionals who might work with someone living with the condition.

FASD Hub Ireland® is based on similar support services provided in other countries where FASD is a recognised disability and funded by government agencies. Since the launch here in Ireland, there has been an increased awareness about FASD, especially from people hearing about the condition for the first time. The HSE estimated in September 2022 that as many as 7.4% of the Irish population are living with FASD and most of those people will have other diagnosis, such as ADHD and ASD, whilst not being aware that FASD is perhaps their underlying condition.

Chief Executive Officer of FASD Ireland, Tristan Casson-Rennie said, “It is safe to say that FASD Hub Ireland has been a life changer and life saver given some of the enquiries we have received over the last 12 months. We weren’t sure if there would be much uptake at the start, given the lack of awareness about the condition and no diagnosis pathway available.” He continued, “However the first call arrived within 10 minutes of the Hub opening. Enquiries have ranged from parents and carers wanting to find out more, or who are in crisis, to a gentleman in his 70’s who suspects he is living with FASD and wanted to share his coping strategies. Many professionals from Teachers to Social Workers and GPs have called for guidance and signposting. It is clear that because of the lack of a diagnosis pathway and funded support, people have nowhere to go when they realise they may be living with FASD and need help and advice.”

FASD Ireland has recently been awarded funding from the Department of Children, Equality, Disability, Integration and Youth to continue to provide the service. Mr Casson-Rennie said, “Minister for Disability Anne Rabbitte TD has been a fantastic supporter of our work, and has been able to identify and secure funding which has allowed us to employ an experienced Hub Coordinator. FASD Hub Ireland is continuously evolving. With new research and information being updated from around the globe, we have to ensure that all of our team are current, whilst ensuring every enquiry is responded to with the empathy and understanding that is deserved.”

FASD Hub Ireland® is open Monday to Friday, 10am until 4pm. Call 065 670 3098 or contact via their webform: www.fasdhub.ie

Minister for Disability confirms commitment to financially support FASD Ireland

Tue, 05 Mar 2024 11:52:53 GMT

Minister for Disability, Anne Rabbitte TD, confirms departments commitment to financially support FASD Ireland

FASD Ireland are delighted to acknowledge the commitment made by Minister of State for Disability, Anne Rabbitte T.D. in Tuesday evenings Dáil Éireann Motion - Supporting People with Disabilities and Carers.

Foetal Alcohol Spectrum Disorder (FASD) is Ireland’s most prevalent and only preventable neurodevelopmental disability and affects up to 7.4% of the population. Everyone knows someone who lives with FASD, they just may not have a diagnosis.

We are pleased that new funding will be allocated to support us in developing FASD Hub Ireland and will also provide for new research specifically into the prevalence of FASD in Ireland.

We would like to also congratulate the other organisations mentioned in the clip who were included in the announcement on Tuesday evening.

Drinking any amount of alcohol whilst trying to conceive or during pregnancy may harm your baby. If you are able to stop drinking alcohol, then both parents should stop 6 weeks before conception.

New Research by Prof Anita Gibbs

Sat, 17 Feb 2024 11:45:38 GMT

New Research - Prof Anita Gibbs

‘No one believed us: no one came to help’: caregivers' experiences of violence and abuse involving children with foetal alcohol spectrum disorder .

Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with foetal alcohol spectrum disorder (FASD).

In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet, caregivers also showed resilience and implemented strategies of de-escalation and distraction. More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.

FASD Ireland supports open letter calling for a health impact assessment of the Safe Alcohol Bill

Thu, 08 Feb 2024 11:54:57 GMT

FASD Ireland supports open letter calling for a health impact assessment of the Safe Alcohol Bill

More than 65 health, social and community organisations, academics and advocates, have come together to voice strong opposition to proposed measures in the Sale of Alcohol bill that will dramatically increase the number of venues serving alcohol, as well as significantly extending the opening hours of pubs, bars and nightclubs.

The open letter, proposed and written by Colleagues at Alcohol Action Ireland , to the three government party leaders – An Taoiseach, Leo Varadkar, Tánaiste and Minister for Foreign Affairs, Micheál Martin, and Minister for the Environment, Climate, Communications and Transport, Eamon Ryan – is an urgent call for this government to fully assess the implications of increased alcohol availability.

CEO of Alcohol Action Ireland Dr Sheila Gilheany said: “This letter shows the deep disquiet in the health and social community and makes a shared call for an immediate health impact assessment (HIA) of this legislation to be carried out. We have been calling for this from the very start of this legislative process and the question must be asked – why doesn’t this government want to carry out a HIA?

“We, and all of the organisations listed, from health to community groups, to academics and individuals, are simply asking the government to know what the health, social and financial costs of these proposals will be before they jump into it. This is not too much to ask.

To date, the Minister for Justice, when asked about plans for a HIA has hidden behind references to consultations which have already been carried out. Such consultations provide useful views, but they do not replace the need for specific data on the numbers and funding levels of Gardaí, medical, social and transport services which will be required to deal with the fallout from this legislation.

While it appears that government is not troubled about these issues, polling on this bill highlights that the public are certainly worried with 67% of people concerned about the potential impact on public services (such as Emergency Departments, ambulances, Gardaí, and transport) due to the proposed extension of opening hours for pubs, late bars, and clubs.

FASD Ireland Chief operating Officer, Scott Casson-Rennie, provided advice and guidance to Alcohol Action Ireland relating to the impact of Foetal Alcohol Spectrum Disorder which was highlighted in the open letter, with Ireland estimated to have a prevalence rate of 2.8% - 7.4% of the population, the third highest prevalence rate in the world.

You can view the open letter here or for further information you can visit Alcohol Action Ireland website

FASD Ireland awarded place on Social Enterprise Ireland Action Lab 2023

Tue, 30 Jan 2024 12:49:49 GMT

FASD Ireland selected to take part in SEI Action Lab

FASD Ireland is one of eight organisations to win a place on Social Entrepreneurs Ireland’s (SEI) Action Lab programme. This three-month programme aims to accelerate social change through the power of people. The eight successful participants had previously taken part on the SEI Ideas Academy, an earlier programme, and were chosen for the Action Lab based on their potential and progress since 2022.

Tristan and Scott Casson-Rennie earned their place on SEI’s follow-up accelerator, which includes tailored support and a bursary of €3,000. This win shows the continuation of support from SEI, with Tristan having graduated from the SEI Ideas Academy in June 2022. Tristan successfully pitch for seed funding in November 2022, where SEI awarded FASD Ireland €6,500 to continue their work.

There are more than 244,000 people across Ireland affected by Foetal Alcohol Spectrum Disorder. FASD is the largest preventable neuro-developmental disability in Ireland, affecting 600 babies annually. FASD is associated with physical, mental, educational, social, and behavioural difficulties which will start to appear as the child turns five years old. The condition is often misdiagnosed resulting in detrimental effects on children’s development which follows them well into their adult lives. Without any kind of diagnosis, children are often excluded from primary and post-primary education, which has massive knock-on effects.

Ennis-based Tristan and Scott launched FASD Ireland 14 months ago in order to; prevent FASD from happening in the first place, support people living with FASD and raise awareness of FASD across Ireland.

Since 2022, with the support of Social Entrepreneurs Ireland, FASD Ireland have spoken at the Pathway to Inclusive Education conference. They have also used funding from SEI towards the establishment and pilot of the National FASD Hub for Ireland. Scott and Tristan hope to launch the National FASD Hub for Ireland on O’Connell Street, Ennis during the first quarter of 2023.

Social Entrepreneurs Ireland’s Action Lab support the strategic progress of high-potential solutions and helps social entrepreneurs to develop as leaders by giving them the scaffolding and space to experiment and grow. The programme will do this through consultation, workshopping and by maximising the expertise available within SEI’s extensive network to help each participant progress towards achieving tangible impact. The other seven organisations’ focus area varies from education fitness programmes for children experiencing homelessness and creating a supportive network of farmers, crafters, processors and designers in facilitating an Irish regenerative fibre system. Participants were selected for the programme following a period of internal research and selection on SEI’s behalf. At the end of the programme, participants can apply for a share of €21,000 in seed funding to further support their work.

Speaking about the Action Lab, SEI’s Programme Manager said, “We are very excited to launch the Social Entrepreneurs Ireland Action Lab. The eight participants are incredible social entrepreneurs, who we believe, with the right support, will accelerate the pace of change and help solve some of Ireland’s entrenched social problems.”

SEI are grateful to have the 2023 Action Lab Programme supported by The Tomar Trust, eBay Foundation and Seed Fund supported by RBC Brewin Dolphin.

New research - Dr Katy Tobin from Trinity College Dublin

Thu, 28 Sep 2023 11:15:10 GMT

New research - Dr Katy Tobin from Trinity College Dublin

First research of it's kind carried out in Ireland - Understand the Experiences and Need of Family Caregivers of People living with FASD

This new research shines a light on the lives, challenges and support needs of families raising children and young people with Foetal Alcohol Spectrum Disorders here in Ireland. The "FASDcare" study is the first of its kind in Ireland and included a survey of 70 caregivers.

Dr Katy Tobin, Assistant Professor in Biostatistics at the Global Brain Health Institute and Public Health and Primary Care, School of Medicine, Trinity College Dublin was the lead investigator on the research. The report highlights the enormous stress and financial strain faced by caregivers of children and young people living with FASD in Ireland as they navigate a system that does not provide diagnosis or specialist services for this complex range of disorders. FASD affects about 5% of young people in Ireland, the third highest rate in the world. Our findings illustrate the urgency for change to address the major inequities and unmet need faced by thousands of families affected by FASD in Ireland.

Foetal Alcohol Spectrum Disorders (FASD) are a range of adverse health effects attributable to alcohol consumption during pregnancy. A major gap exists in the availability of support services to meet the complex needs of people living with FASD in Ireland, including educational, social and medical services. FASD are associated with a wide range of complex co-morbidities. The most common co-morbidities reported in this new study were emotional or behavioural disorders including Attention Deficit Hyperactivity Disorder (ADHD) / Attention Deficit Disorder (ADD) (64%) and Autism Spectrum Disorder (ASD) (21%). The rate of ASD in this study far exceeds that reported in the literature, potentially indicating misdiagnosis of children here.

The launch of the report was held at Trinity College Dublin, with Dr Tobin presenting her summary of the research.

You can read the full report by downloading it below.

Funding success to raise awareness of FASD in Clare Schools

Thu, 17 Aug 2023 11:23:04 GMT

Funding success to raise awareness of FASD in Clare Schools

A recent funding application to the St Francis Credit Union in County Clare has proved a success for FASD Ireland. The application for funding from the Credit Unions ‘Social & Cultural Fund 2023’ was made earlier this summer, with the application being successful.

The application was made with the intention of providing awareness training to Transition Year students in Schools across the County.

Foetal Alcohol Spectrum Disorder (FASD) is caused by prenatal alcohol exposure and is associated with a range of lifelong physical, mental, educational, social and behavioural difficulties. Whilst the message from FASD Ireland and the Health Service Executive (HSE) states, “No amount of alcohol is safe when planning to conceive or during pregnancy” it is hugely important that all generations of Irish Society are aware of the risks of consuming alcohol when planning to conceive or during the pregnancy.

The awareness training will take place online and in schools to ensure maximum impact on Students and Educators who have responsibility for the Transition Year, with around 20 Secondary Schools across Clare being offered the training.

Tristan Casson-Rennie, CEO of FASD Ireland, commented: “As a national organisation based in Ennis, we are very keen to reach young people locally to provide them with information that is important for their futures, their partners futures and ultimately their children’s futures. FASD does not just affect those who may have an addiction to alcohol, it can be from just one glass of wine/vodka on a Friday night, and the lifetime affects of that can have a massive impact on a child and of course their families. It is not about shame or blame, it is about education and awareness, and we are delighted that St Francis Credit Union have recognised the need to be able to education on this risk in Schools across Clare.”

Louis Fay CEO St Francis CU said: “As a credit union we have been serving the community for 57 Years and in that time we have seen the credit union grow from strength to strength. I am delighted to be in a position to support FASD Ireland on behalf of the members at St Francis Credit Union. We are a non-profit organisation where all funds are re-invested into the services we provide our members or used to support the common bond through Charities, sports clubs, local community events. We set up the Social & Cultural Fund back in 2018 with the main objective to support organisations such as FASD Ireland that are also a not-for-profit organisation and are proud to do so, applications for next year will open in January 2024”.

The training for Transition Years is available now. If you would like to find out more about this for your school or indeed have a child in TY, then please contact office@fasdireland.ie or call 065 6703096.

Let's talk about FASD - Starting a conversation from a National and International perspective

Thu, 27 Jul 2023 11:36:22 GMT

Let's talk about FASD - Starting a conversation from a National and International perspective

Our CEO Tristan was thrilled to be invited to speak at the Mid West Regional Drugs and Alcohol Forum event 'Let's talk about FASD - Starting a conversation from a National and International perspective', held at the Greenhills Hotel in Limerick.

Tristan gave a brief introduction to FASD including common symptoms and challenges, three key priorities that need addressing urgently and require little more than Ministerial approval for changes to be made (Long Term Illness Card; Awareness of FASD in Education; Justice system) and what the future looks like for FASD Ireland, our plans and how they might be funded going forward.

Eleanor Keogh from the HSE Integrated Alcohol Service then spoke about the services that are being provided and gave an insight into the numbers/types of clients the service is helping.

Dr. Denise Hatzis Clinical Psychologist talked about the work that she is doing with Griffith University and establishing a FASD Diagnostic Clinic in Queensland, Australia. A plenary session followed where attendees were asked to consider the symptoms they might observe in a child living with FASD.

Bernie O'Grady from Cooolmine talked about Parenting under Pressure (PUP) and how the framework that has been developed may help parents and carers of children living with FASD.

The event concluded with the panel receiving a number of questions from attendees relating to the earlier presentations. It was lovely to see so much interest from across Tipperary, Limerick and Clare. We even had someone from Mayo attend!

Events like this really do help us to raise awareness of FASD and we look forward to the next time!

#FASDIrl #FASDAwareness #LetsGetIrelandTalkingAboutFASD

Alcohol label plan praised and criticised

Mon, 24 Jul 2023 11:27:10 GMT

Alcohol label plan praised and criticised

Britain and Canada express interest in initiative as others voice complaints

When Minister for Health Stephen Donnelly signed "the world's first comprehensive health labelling of alcohol products" into law last May he said he looked forward to "other countries following our example".

Correspondence on the initiative released by the Department of Health does indeed show some foreign interest in the initiative while also offering an insight into some of the concerns raised about the plans in Ireland

Issues raised with the Minister range from a suggestion by foetal alcohol spectrum disorder (FASD) campaigners that the plans for the labels do not go far enough to complaints that the labels will not be bilingual and concern from the drinks sector at the impact on wine imports.

Records released under the Freedom of Information Act show how politicians in Britain and Canada have sought meetings with Mr Donnelly to find out more about the planned labels which are due to appear on beer and wine bottles in 2026.

The Irish Times previously reported how Eurocare, an alliance of 51 organisations that aim to reduce and prevent alcohol-related harm in Europe, praised the plans in a letter to Taoiseach Leo Varadkar, Tánaiste Micheál Martin and Mr Donnelly.

It likened the initiative to the workplace smoking ban brought in by Ireland almost 20 years ago and suggested the alcohol labelling plans were a “turning point for public health” that would bring about “a significant reduction in alcohol-induced harm, not just in Ireland but globally”.

Domestic Concerns

But the correspondence also reveals domestic concerns at the plans.

Chief executive of FASD Ireland Tristan Casson-Rennie wrote to Mr Donnelly in May expressing his disappointment at the planned labels.

FASD Ireland describes foetal alcohol spectrum disorder as “Ireland’s silent epidemic” and estimates there are 244,000 people affected by conditions related to alcohol exposure before birth.

Mr Casson-Rennie told Mr Donnelly the planned image of a pregnant woman holding a wine glass, with a red line through the woman, should not be used, saying, “It further reinforces the message of blame and shame on the pregnant woman, and not on the effects of prenatal alcohol exposure.”

He argued there should be a written warning that “no amount of alcohol is safe at any time when trying to conceive or get pregnant” and it should be across the front of any alcohol container, not at the rear of the bottle.

The department said: “The pregnancy pictogram included in the labelling law was chosen based on international and national data as being the most effective method to convey the intended message.”

In other correspondence, Fine Gael MEP Frances Fitzgerald passed on an email from Wines Direct chief executive Gareth Keogh who said Ireland was going on a “solo run”.

Mr Keogh said his business deals with independent, family-run suppliers and labelling specifically for Ireland would be an “extra cost and will render the wine unsellable in the rest of Europe”.

He suggested that such winemakers “will simply stop supplying the Irish market”.

'A Shame, not disaster'

He added that winemakers would “easily find another market”, adding “Losing the Irish market for them would be a shame but not a financial disaster. However for us it would be catastrophic.”

Mr Keogh also wrote that while it was not his main point, it was repeatedly said to him during a trip to Italy that “Ireland is being used as a rod to beat the wine industry.”

He said, “All EU countries have their own anti-alcohol activists and the Irish Government’s move has had the effect to put pressure on EU national governments to start putting health warnings on wine.”

He added, “Imagine if the French insisted that Ireland put carcinogen warnings on beef.”

The department’s response outlines how the labelling legislation has a three-year lead-in time and will not come into force until May 2026 to allow businesses time to prepare for the measure.

It said it was designed to be “proportionate and balanced” and it provided the option that the health warnings would be on a sticker attached after the alcohol was imported into Ireland.

Mr Keogh told The Irish Times that the extra costs of such stickers would still fall to the winemaker and many would “object to having a label equating their wine with cancer and just refuse to export”.

Green Party TD Neasa Hourigan wrote to Mr Donnelly in March asking him reconsider the decision not to include Irish language warnings on the new labels.

She said: “There seems little consistent reasoning why the producers of wet wipes, tobacco, sanitary items and cups should be bilingual, and alcohol producers should be exempt.”

The department said that the Public Health (Alcohol Act) 2018 required licensed and off-licence premises and websites that sell alcohol to have bilingual notices displayed.

It added that “In the case of labels on alcohol products, the information is required in the English language only” and that this was done “in the interests of proportionality… to lessen the burden on businesses.”

The original article is located here .

Press Release - FASD Ireland response to Alcohol Labelling

Mon, 22 May 2023 11:34:38 GMT

Press Release - FASD Ireland response to Alcohol Labelling

Jeff Noble - “FASD 1oh!1 – Bringing it back to Brain”

Mon, 24 Apr 2023 12:25:24 GMT

“FASD 1oh!1 – Bringing it back to Br ain” - Jeff Noble in Ayr , Scotland

Having been a guest on FASD Success podcast with host Jeff Noble last year, it was inevitable there would be a time when I would get to meet him in person. If you missed that podcast then you can listen here: Episode 114 - FASD Success Show . Hosting a podcast myself with a similar style – insert some humour and it is more relatable to the listener, I was struck by a number of similarities between myself and Jeff, so when I was invited by Jeff to be a guest at his training event in Ayr, Scotland last week, I jumped at the chance.

Jeff is based in Canada, so this was quite a big event for Scotland, his first time in the UK, with a number of countries already visited around the world. The majority of those attending the event were parents or carers of children and young people with FASD, those with a professional interest and a number of large and small organisations sent representatives and that precious and very important presence of some adults living with FASD also attended.

“FASD 1oh!1 – Bringing it back to Brain” was well attended with everyone hanging on to each word that Jeff said, the real life stories he shared, including how he got into the FASD world. It wouldn’t be fair for me to give any of that away on this blog, as those are Jeff’s stories to tell but I did have some “aha” moments from the day – the biggest aha moment was to be in a room with others who understood me, not just as someone who works in Irelands only FASD organisation, but also as a parent. It was a validating experience.

There were lots or relatable points during the day, but none more so than how we use language. I am not sure where this came in the day, but I feel like it is a very important point that he made on the use of the word ‘Behaviour’. A word that we all regularly use, and which can be related to ‘bad’ or ‘naughty’ because that is what we hear. A simple change of wording from ‘behaviour’ to ‘symptom’ changes our perception of how a child or young person with FASD is dealing with what is being thrown at them, given that they have a condition where the symptoms are often seen as behaviours.

Parents and carers are regularly judged on their parenting styles and techniques, the whole world over, we all parent differently. Parents and carers of someone with FASD will hold a number of strategies that work for them, but to someone on the outside, this may be seen as ‘enabling’. No consequences, no telling off etc. For that family it could be the difference between an extreme escalation in symptoms that results in some form of violence (just one example) as a child/young person finds themselves unable to deal with a situation and unable to articulate that like someone with a neuro typical brain function. This is not enabling – it is Accommodating – and simply put it makes life easier for the child/young person.

One final thing that struck me was the messaging from Jeff in terms of his thoughts on alcohol... Jeff doesn't actually partake in alcohol, but his message "I am not anti-alcohol, I am pro planning pregnancy". This really struck with me, because I think when we work in this sector it is extremely easy to fall into the belief that FASD is always associated to addiction and abuse. I have yet to meet any Mother who set out to intentionally harm their Child, and I am a firm believer in choice. It was not something I had thought of before, and for me I think if you are part of the problem then you are part of the solution.

There were so many other great areas covered during that day, and I would unlikely be able to do them as much justice as Jeff would himself, so it does go without saying that if you get the chance to hear more from Jeff yourself, then I would highly recommend doing just that.

A shout out to Oshays Brain Domain who hosted the event with Jeff, Aliy Brown, who it was great to catch up with after 4 years who was the original FASD Hub project lead in Scotland, Judith Knox now working at FASD Fife (my home county) and lastly to the amazing adults who spent the time with us on the day and shared some of their experiences – including our very own Maggie May.

You can listen to another quick podcast with Jeff, which I recorded with him once the day was finished, where we had a discussion about why our kids swear, drinking culture and the difference between countries. And a few laughs: The A&F Podcast - with Jeff Noble

Salford FASD Conference - Part 2

Fri, 14 Apr 2023 09:18:05 GMT

Our second and final blog about the Salford FASD Conference has been written by our Hub Developmental Assistant - Rob O'Connell. This was Rob's first opportunity to network with others working to improve support and services for those living with FASD across the UK and Ireland.

A couple of weeks ago I was privileged to attend the conference “FASD in the UK: Building on 20 years of progress” at Salford University, Manchester

It was my first time attending an event specifically about FASD. It was amazing to see so many people in the one place so passionate about this neurodevelopmental disability and it really helped to put into perspective the grasp FASD has on the UK, much like the prevalence in Ireland. I went to Salford with a mindset of wanting to learn as much about what is going on in the UK now and then trying to compare that to see how we can improve awareness, supports and education of FASD in Ireland.

Throughout the day I had the pleasure of talking to and listening to different people including people that live with FASD themselves and others that are doing such inspiring work with FASD in the UK. I learned so much from my time at the conference and was excited to bring it back and share with the rest of the team at FASD Ireland.

An area of concern for me before going to the conference, is how do I as the FASD Ireland Hub Development Assistant, help to set up the hub in such a way that it runs efficiently. I always want to make sure that whatever I do with FASD Ireland is beneficial to the organisation. I want to make it an easy and a seamless transition for someone to take my place when my placement is over and I have to return to university.

I had the pleasure of talking to Jo Garofalo who works at FASD Hub Scotland who helped me to understand that training is key. She explained that most of the people that work in FASD Hub Scotland are parents of individuals with FASD which I found quite interesting as these people would be quite knowledgeable in areas surrounding FASD through their experiences as parents and carers. Therefore, to allow a seamless transition between my role and the person who takes the role after me I must have an adequate plan in place that will help people understand FASD and work the Hub efficiently.

I was delighted to have the opportunity to listen to Dr Raja Mukherjee speak at the conference. It was amazing to hear the story of how FASD has changed in the UK over the last 20 years. Some of the information that Dr Mukherjee provided really helped me to understand the direction in which FASD Ireland is going. He highlighted the importance of a network of people working together with people that are living with FASD. Dr Mukherjee spoke about diagnosis and how it is a multi-disciplinary assessment as FASD can affect an individual in many ways through behaviour and education for example, characteristics of FASD will be seen at school, at home, at work and in many areas of everyday life. Therefore, it is crucial to have a collaborative of people working from different sectors, departments, and organisations to provide support for individuals living with FASD in the best way possible after diagnosis. I was excited to share this with the team at FASD Ireland, in hopes that we can instil this way of thinking and organise these collaborative teams to help people in Ireland as Dr Mukherjee plans to help people in the UK living with FASD.

Along with the idea of multi-disciplinary assessment and multi-disciplinary care I learned the importance of understanding FASD on a National, Regional and Local level. There is already a healthcare system in Ireland, and it is about using the system that is already there efficiently. We do not need to develop a whole new referral route for the “new surge” of 240,000 people that have FASD in Ireland. These people are already here, these individuals are living with FASD every day without even knowing it or even might have been told it is something else. The ideal is to get the healthcare system from the bottom-up to understand FASD and to be able to deal with it in a way that will be beneficial for every person with FASD. There should be no more misdiagnosis being made as every Doctor and GP should be educated in how to recognise the characteristics of FASD when they are presented in front of them. This is currently not the case in Ireland with most Healthcare professionals, and it is of upmost importance that people are trained and educated so that the healthcare system can start to recognise FASD in these individuals.

A view that the UK is beginning to take in relation to FASD that I found interesting is that they have started to assume that all people have FASD until proven they don’t. Instead of spending lengthy amounts of time going through records and looking for evidence of pre-natal alcohol exposure, the experts in the UK have said it makes more sense to assume that there was alcohol exposed pre-Nataly because we know that 80% of women will drink alcohol at some stage throughout their pregnancy. I thought that this would be a good view to have in Ireland as it would save time looking for evidence of alcohol exposure and if the characteristics of FASD are presented due to the high rate of women that drink during pregnancy it would only make sense to connect the dots.

Miranda Eodanable spoke about “people talk about FASD diagnosis but barely any young people are asked about it”: A photovoice study with adolescents with FASD exploring disability, disability identity and support. This was something that I had not really thought about before the conference. It struck me and made me realise that this is probably something that most people who are diagnosed with a disability will have to deal with. The fact that they realise what the diagnosis means will generally happen at the crucial age of when people are normally becoming more self-aware of their identity as young adolescent. This could be quite detrimental to a young person’s self-confidence, and I believe that it is crucial we put in supports in Ireland to prevent this from happening be that through peer support groups or meetings with psychologists even after a diagnosis is made.

It was interesting to listen to “How we want to be treated” from The UK FASD Manifesto from people with FASD. I thought these young people were so brave to get up in front of all the conference and talk about their lived experience and their hopes for the future of FASD and how they would like to be treated. Some of the points the speakers made:

- Don’t call FASD a problem.

- They want to be asked to do things not told to do things.

- They said how it is easy to feel rejection.

- They just want people to understand, so if you are unsure of something just ask.

Something that really helped me in dealing with parents calling the hub was the young people did not blame their birth mothers for their FASD as their birth mothers didn’t have the information that we have today. This is quite an honourable way of looking at it and it’s known that most children don’t blame their mother for their FASD they blame the system for not having the awareness of FASD.

Overall, the Conference went brilliantly. I learned so much and I hope to use my newly found knowledge to put to good work in Ireland.

Salford FASD Conference - Part 1

Thu, 06 Apr 2023 15:35:30 GMT

FASD Ireland's Maggie McHugh reviews the Salford FASD Conference as someone living with FASD.

I recently had the opportunity to attend the conference "FASD in the UK: Building on 20 years of progress".

Listening to all the speakers and presenters, as a person l iving with FASD I wanted to reflect on what really stuck out for me.

The first thing I noted was when any of the Presenters spoke about anyone living with FASD not once did I hear a negative word used. They referred to outcomes and behaviours that can be caused by the way a person living with FASD is treated, but never the person with FASD being the negative.

Secondly, not once did I hear the phrase ‘deliberately choosing to behave this way’, instead I heard words like ‘hope’, ‘succeeding’ and ‘inspirational’, as well as what we can do and what we can learn - just by positive interactions with individuals. These individuals are the ones teaching: doctors, educators, social workers etc. The overall take away was that the lived experiences and knowing the future isn't just prevention but also supporting the adults with FASD.

It was genuinely exciting to see how much progress the UK has made and I can see how the blocks they are building are beginning to take a similar shape in ireland. Ireland could really benefit from reviewing and understanding these research and studies and implement services that work.

The work that is being done to make diagnosis more straightforward and cost effective as well as speeding up the process of getting a diagnosis is really exciting to learn. The work that is being done by Utilising 3D Imaging and Machine Learning for Diagnostic Assessment presented by Dr Mike Suttie, University of Oxford makes me genuinely hopeful that families and individuals will be able to access a diagnosis more easily.

Another presentation that really stuck with me and struck a chord with was a presentation on "Implications of FASD for the Criminal Justice System – David Gilbert, University of Salford" and it shocked me just how vulnerable we truly are when we are put in a situation where our needs aren't being heard or met. It seems it is too easy for us to be put in a situation where we accept responsibility for a crime we didn't commit all because our developmental dysmaturity really comes into play when we don't understand what is actually being asked. This can very often be used against us in the justice system that leads to individuals being charged and sometimes imprisoned for a crime they didn't commit. This is mainly due to a lack of understand of our disability and how to ask questions in the right format for individuals to understand. For me personally it made me appreciate that I could potentially also fall victim to that, and it’s so important that this study really need to be seriously considered by those in the criminal justice system. The steps need be put in place so that Individuals with FASD don't get punished for a crime they didn't commit.

I think a highlight for everyone who attended the conference was to hear of the lived experience and their perspectives on what changes they want to see happen. 20 years ago individuals with FASD wouldn’t have been invited or even been able to represent themselves at conferences along with researchers and doctors, but at Salford individuals with the lived experiences took centre stage and they really advocated for the ‘Nothing About Us Without Us’ movement. We want to be involved and be informed and also we want people to come to us if people have questions instead of going over our heads.

The fact that doctors and researchers were acknowledging the fact that they learn so much from working with and alongside individuals with FASD and that they learn so much from just listening to what it is like to have that lived experience really shows how far everyone in the FASD field has come.

The ‘FASD Manifesto’ really embraces that individuals want to be respected and they want their voices and stories to be heard and listened to and for society to take what they say seriously and learn from them so that life doesn’t have to be so difficult for everyone.

FASD Hub Ireland launches

Tue, 04 Apr 2023 11:18:28 GMT

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Ireland's first FASD Hub launched in Ennis

Thu, 30 Mar 2023 11:41:06 GMT

Ireland's first FASD Hub launched in Ennis

IRELAND’S first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD) launched this week in Ennis. FASD Hub Ireland will provide a compassionate, confidential helpline offering advice, support and signposting. The Hub is run by FASD Ireland, a not-for-profit social enterprise based in Ennis, and is part funded by Social Entrepreneurs Ireland.

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia*. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

Welcoming the launch of the Hub, Minister of State for Disabilities, Anne Rabbitte TD, said, “As the Minister for Disability, I am delighted to support the launch of the FASD Hub. We need to build more awareness of hidden disabilities in Ireland including Foetal Alcohol Spectrum Disorder and today’s launch of FASD Hub Ireland is an important first step in this. I very much look forward to working with the team over the years ahead as we develop a deeper understanding of what supports need to be developed and how best we implement them.”

FASD results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum. Each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a life-long neuro-developmental condition. All people with FASD have many strengths. Early diagnosis and appropriate support are essential, especially for executive functioning.

The launch of the Hub at FASD Ireland’s HQ in Ennis will see Cathal Crowe TD, Violet-Anne Wynne TD, Senator Martin Conway and invited guests hear an overview from FASD Ireland on its strategy and future plans for the organisation.

Tristan Casson-Rennie, CEO of FASD Ireland, said, “We are delighted to launch the hub which will help us meet the increasing demand for support that we are seeing from families, carers, educators, healthcare workers and the wider community across Ireland. Ireland has the third highest prevalence of FASD in the world yet little is known about the condition. The launch of the hub today is a significant step forward in our vision of raising awareness of FASD across the country, to break down barriers and be a catalyst for everyone with FASD to be able to live the life they strive for”.

FASD Hub Ireland has been partially funded from grant funding provided by Social Entrepreneurs Ireland’s Ideas Academy 2022, and lately its Action Lab 2023.

“Additional funding will be required to meet the volumes of calls that are being received by FASD Ireland and we look forward to working with the HSE and Túsla to raise the awareness of FASD and provide essential support for people living with FASD across the country”, added Mr. Casson-Rennie.

FASD Hub Ireland’s support service will operate from Monday to Friday 10:00-16:00 each week and can be reached on 065 670 3098.

The original article is here .

FASD Ireland launches Ireland's first Helpline for FASD

Mon, 27 Mar 2023 11:45:22 GMT

FASD Ireland launches Ireland's first Helpline for FASD

Ireland’s first national hub launched to support those living with Foetal Alcohol Spectrum Disorder

· Minister Anne Rabbitte welcomes launch of support service

· Over 200,000 people across Ireland living with the condition

· Ireland has the third highest prevalence of condition globally

27th March: Ireland’s first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD) will be launched today. FASD Hub Ireland will provide a compassionate, confidential helpline offering advice, support and signposting. The Hub is run by FASD Ireland, a not-for-profit social enterprise based in Ennis, and is part funded by Social Entrepreneurs Ireland.

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia*. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

Welcoming the launch of the Hub, Minister of State for Disabilities, Anne Rabbitte TD, said: “As the Minister for Disability, I am delighted to support the launch of the FASD Hub. We need to build more awareness of hidden disabilities in Ireland including Foetal Alcohol Spectrum Disorder and today’s launch of FASD Hub Ireland is an important first step in this. I very much look forward to working with the team over the years ahead as we develop a deeper understanding of what supports need to be developed and how best we implement them.”

Tristan Casson-Rennie, CEO of FASD Ireland, said: “We are delighted to launch the hub which will help us meet the increasing demand for support that we are seeing from families, carers, educators, healthcare workers and the wider community across Ireland. Ireland has the third highest prevalence of FASD in the world yet little is known about the condition. The launch of the hub today is a significant step forward in our vision of raising awareness of FASD across the country, to break down barriers and be a catalyst for everyone with FASD to be able to live the life they strive for”.

FASD Hub Ireland has been partially funded from grant funding provided by Social Entrepreneurs Ireland’s Ideas Academy 2022, and lately its Action Lab 2023.

FASD Hub Ireland’s support service will operate from Monday to Friday 10:00-16:00 each week and can be reached on 065 670 3098.

ENDS

Notes to editor:

*Prevalence survey by Jama Paediatrics by WHO Region in 2017 . Of 187 countries, South Africa was estimated to have the highest prevalence of FASD at 111.1 per 1000 population (95% CI, 71.1-158.4 per 1000 population), followed by Croatia at 53.3 per 1000 population (95% CI, 30.9-81.2 per 1000 population) and Ireland at 47.5 per 1000 population (95% CI, 28.0-73.6 per 1000 population).” Based on 2022 Census in Ireland, the population was 5,123,536. With a prevalence of 4.75% this equates to 243,367 people living in Ireland with FASD. In the same way, we know that in 2021 the number of babies born in Ireland was 58,443, so using 4.75%, that results in 2,776 babies with FASD.

About Foetal Alcohol Spectrum Disorder (FASD)

Foetal Alcohol Spectrum Disorder (FASD) results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum and each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a lifelong neuro-developmental condition. More children are born every year with FASD than are born with autism spectrum disorder, spina bifida, cerebral palsy, Down's syndrome and sudden infant death syndrome combined.

About FASD Ireland

FASD Ireland is a not-for-profit social enterprise which provides awareness, education and support of FASD. Our organisation exists to support everyone with a connection (whether diagnosed or not) to FASD, and we provide a supportive environment for this to happen. FASD Ireland was established in 2021 to be the 'go to' hub for everyone living with FASD, including families, carers, educators, healthcare workers and the wider community across Ireland. www.fasdireland.ie

FASD Ireland awarded a place on Social Entrepreneurs Action Lab 2023 - Clare FM

Thu, 19 Jan 2023 12:59:56 GMT

FASD Ireland awarded a place on Social Entrepreneurs Action Lab

Ennis-based chiefs working with Foetal Alcohol Spectrum Disorder Ireland have been awarded extra funding to continue their work. Tristan and Scott Casson-Rennie have been given a €3,000 bursary and a place on Social Entrepreneurs Ireland’s Action Lab programme.

There are more than 244,000 people across Ireland affected by FASD, which is the largest preventable neuro-developmental disability in the country.

Tristan says they’re working with third level institutions in the region on the project.

Click below to hear the full interview with Alan Morrissey at Clare FM

The wires got crossed in my brain as my mom couldn't stop drinking

Sun, 04 Dec 2022 13:07:46 GMT

"The wires got crossed in my brain as my

mom couldn't stop drinking"

Maggie May McHugh was three days old when she was put into care. Some 14 years later her adoptive mother sat her down and told her that she had a foetal alcohol spectrum disorder. “My adopted mom just said, ‘Do you know what it’s like, Maggie, when you have a mosquito bite you just want to itch all the time and you’re told you cannot itch it?’” she recalled. When she nodded, her adoptive mother told her: “‘Drink was that itch, and your mom just couldn’t fight the itch.’ I was like, how I can hold any grudges?” She was fostered by her now adoptive mother as a three-month-old baby but kept up weekly visits to her birth mother for most of her childhood.

Her diagnosis came after a German friend of the family visited her Foster home in Clare when McHugh was around three years old and immediately recognised signs of the condition from children whom she had fostered. "I had facial features to a certain extent. They weren't as severe as some cases are," McHugh said, adding that they all but disappeared as she grew into adulthood. "I wasn't really talking. I wasn't really walking. I was very skinny. I wasn't thriving. I didn't like eating." With little known about the condition in the late 1990s, and Irish child psychiatrist, who flew to Canada to train in the condition, eventually diagnosed McHugh when she was five or six.

HSE Figures released last week, in answer to a parliamentary question, estimate about 6,000 babies a year are born in Ireland with foetal alcohol spectrum disorder (FASD) and 600 with foetal alcohol syndrome, the most severe form. A World Health Organisation (WHO) study in 2017 estimated Ireland had the third highest rate of FASD, after South Africa and Croatia, at 47.5 per 1,000 population. The global average was 7.7%.

Katy Tobin, an Assistant Professor at Trinity College Dublin and a leading expert on FASD, said it was "difficult to say how widespread it is with any degree of accuracy" due to limited research, but the WHO estimated almost one in 20 people in Ireland could have the condition. The effects are many. "Multiple areas of brain function are affected by prenatal alcohol exposure, including language, more skills, memory and attention," she said. "Academic performance is also affected, [as are] social skills and impulse control. FASD has over 400 conditions associated with it, including ADHD, anxiety disorders and autism." She added: "People with FASD are more likely to develop mental health problems and to become involved in criminal activity and are at higher risk of suicide and addiction."

For McHugh, she has learnt to manage symptoms which affect every facet of her daily life, from cleaning her room to eating meals. "I would be termed as high functioning. But some of the co-morbidities would be: I have an anxiety disorder, I am dyslexic, I have sensory processing issues, ADHD, I have short term memory loss," she said. "I have weak muscle tone in my hand, so I find writing quite a struggle." McHugh added that children with FASD could be misconstrued as naughty or inattentive in classrooms because they get overwhelmed by information. "I don't feel hunger, so I need to be reminded to eat. I have super high pain tolerance, so you know I'd be covered in bruises just from bumping into things, and not notice," she said. "The wires got crossed in my brain."

But one of the most debilitating aspects is the crashing exhaustion she calls 'burn out', which can hit her unexpectedly a few times a year. She does not 'function' when it strikes. "I cannot tell if things are hot or cold, or wet or dry. I cannot form sentences. I cannot think coherently. It is complete exhaustion. Sometimes I recover in weeks. Sometimes it can be months." Although she was told she had FASD at 14, it only really hit her when she was 17 and all her friends headed off to college. "My mom said, 'You're not there yet.'"

On the phone this week from Clare, she reveals she is just back from Washington, where she was giving a talk to raise awareness of the condition. Although a little later than her school friends, she did go onto the 'college experience' and now works part-time in FASD Ireland, along with giving webinars and talks about the condition all over the world and running an online support group. When she first typed the term 'FASD' into Google, she was 'terrified' by headlines about individuals with FASD being more likely to end up in jail. "Individuals firstly have very little impulse control, so very often we don't understand consequences, and also we are very easily manipulated," she said, but added: "There are also stories of people with FASD who have become doctors, who are writing books, who have won awards. I was like, actually, no, I can grow up and be something positive."

In understanding the condition, she points to the anger that individuals. can feel when they get a diagnosis. "There is grief and loss involved for parents whose child is never going to be like a neurotypical child, who may need extra support for the rest of their life. But then there's also grief and loss for the individuals themselves, knowing that they're always going to have challenges, there's always going to be struggles." With her own family, there was an unspoken acceptance on both sides helped by the 'great relationship' between her birth mother and her adoptive mother. "She knew I had a diagnosis of FASD. I knew that it was her drinking that had caused it. We kind of in ourselves reached an awareness of each other where she knew I didn't have any grievances or hate towards her,' McHugh said. "She was an alcoholic. And she grew up in a support network of alcoholics. At that time, there is no information about FASD and in fact doctors were recommending women drink to [ease] an iron deficiency. She wasn't given the help that she needed. She got turned away a lot. My mom never set out deliberately to cause me to have a disability. And for me to hold that against her is unfair. She passed away four years ago. I'm so lucky - I had two mothers and two families." McHugh believes that the stigma about drinking alcohol during pregnancy contributes to women not wanting to admit their habits, which otherwise would help with diagnosing the condition.

Tobin has conducted a new Trinity College study, due to be published in the coming weeks, surveying 70 care-givers of children and young people with FASD. Thirty-six per cent were adoptive parents while 40 per cent were foster parents. If those diagnosed 76 per cent, or 37 people were diagnosed in Ireland. Tobin said Ireland needed national guidelines on diagnosis and a defined care pathway with formal supports. Tristan Casson-Rennie, the director of FASD Ireland, has called for a specialist clinic to be set up to diagnose children with symptoms. "On average those diagnosed in Ireland saw three healthcare professionals on their journey to diagnosis,' Tobin said, adding at least one child saw up to eight professionals. She pointed to a study presented at a recent international conference that examined MRIs of foetuses prenatally exposed to alcohol, showing that brain changes were detectable even at low levels of alcohol exposure. She said: "The takeaway of public health message is that there is no safe amount of alcohol use in pregnancy. Even small amounts can lead to changes in brain structure."

McHugh offered a simple last message: "Nine months might seem like a very long time to not drink, but if it reduces the risk of your child having to have a lifelong disability, I think it's worth it."

The HSE's best available evidence estimates about 600 Irish babies are born each year with foetal alcohol syndrome, with up to ten times the number of babies born annually in Ireland who have other foetal alcohol spectrum disorders. "The majority of these children will have no visible signs of disability at birth and difficulties may not manifest until preschool or school age. As there is no register of persons with neurodevelopmental disorder in Ireland, no up to date data are available on cases of FASD in Ireland," the HSE said. "The HSE encourages pregnant women, and women planning a pregnancy, to have an alcohol free pregnancy. Even a small amount of alcohol at any stage of pregnancy can harm a baby's development and may have lifelong effects such as FASD."

The original article can be viewed here . Please note that this is behind a paywall.

‘I was called a naughty child – but it was caused by my mother drinking when she was pregnant with me’

Sat, 03 Dec 2022 12:59:05 GMT

‘I was called a naughty child – but it was caused by my mother

drinking when she was pregnant with me’

A teenager has told how he was labelled a “naughty child” and accused of “messing about” before he received a diagnosis linked to his mother drinking alcohol during pregnancy.

Jacob Casson-Rennie (16), a fifth-year student from Ennis in Clare, is one of more than an estimated 244,000 people in the country who were born with foetal alcohol spectrum disorder (FASD), an incurable neurodevelopmental condition as a result of the brain being damaged by alcohol in the womb. "I think the whole way through primary school I had no notion of what was causing anything to be honest," he said.

He is one of three adopted children of Tristan Casson-Rennie who last year set up FASD Ireland, a non-profit social enterprise, to try to promote more understanding and support for children and adults with the condition. In a response to Aontú leader Paedar Tóibin, the HSE estimates that around 600 babies are born at the severe end of the disorder and up to 6,000 more annually who are on a spectrum but he said the true estimate is unclear.

Mr Casson-Rennie said: "Around 13pc of women who drink alcohol during pregnancy will have a child with FASD. But the true scale of the numbers living with the disorder is not known. Two in five pregnancies are unplanned and until they find out, women are unaware of the impact of their drinking. There is no blame involved. No woman sets out to harm her baby. The best way to diagnose a child with FASD is between the age of five to 11. However there is no special pathway to diagnosis and no specialist FASD clinics here. Children are slipping through the cracks. Based on World Health Organisation (WHO) estimates for Ireland of 47.5 cases per 1,000 population there are at least 244,000 people with FASD in Ireland, but that could conservative," he added.

The HSE said people with FASD experience lifelong challenges and may need support with many aspects of their health. They may struggle with learning, memory, attention, communication, emotional regulation and social skills. It can cause learning difficulties and behavioural issues for a child and they may struggle getting along with other people and have emotional and mental health problems. They may also be smaller than expected and have problems with eating and sleeping.

Jacob explained that he has problems processing so it takes time to register an instruction. "We call it the 21-second delay," he said. "It takes time in between an instruction to then getting it done. So I have a habit of saying 'no' to a lot of things I am asked - not 'I am not going to do this' but 'no, my brain hasn't fully processed what you have asked me to do yet'. I need time to give you the answer I want to."

He is fortunate in having a supportive special needs assistant (SNA) and teachers in Rice College in Ennis "who are more than happy to repeat it again and explain in a different way so that I can understand." On the rugby field he is a very good rugby player but at the height of the game he must remember to be in a certain place and "I tend to get really frustrated and then I tend to get cards and stuff." But he credits his coach with learning how to respond appropriately. When he explains to his friends about his condition , they say "wow, that makes a lot of sense."

While Jacob is fortunate, his father knows other children are lost in the system. Mr Casson-Rennie said FASD Ireland is now providing free tutorials every week to SNAs to give them insights into the condition. "The system needs to change. The child cannot change," he added. He said Junior Minister Josepha Madigan has been very helpful but the wider education system needs to become involved. It can make a difference between a child with the unrecognised disorder in a mainstream class being constantly sent to detention or even expelled. They can end up with a diagnosis of some sort such as attention deficit disorder and receive some support in school but without any knowledge they have FASD. Mr Casson-Rennie added: "Without recognition of FASD or training in how to support the condition, we have a 'square peg in a round hole' situation. Most of these children and young adults slip through the cracks and often leave education immediately after Junior Cycle as a result - that's if they haven't been excluded by this point in their education."

His organisation has now been awarded funding by Social Entrepreneurs Ireland to provide a national FASD hub for Ireland so that families, carers and professionals are able to access information, support and advice. It will launch in the first quarter of next year and set up a helpline to allow anyone with questions to ring them for information.

While driving over the alcohol limit and smoking during pregnancy are taboo, he feels not enough emphasis is put on the risks of alcohol and mothers to be. If he had his way, there should be a poster on every bathroom door in pubs and licensed premises advising women who may conceive or are pregnant about the risks of alcohol.

As the festive party season approaches, the HSE has provided some tips for pregnant women to avoid drinking. These include:

Planning alcohol free activities and looking ahead and avoiding triggers, including people and places which encourage drinking

Ask partners, friends and family for support

Find new routines that don't include alcohol

Get support from your GP, midwife or obstetrician.

The original article is located here . Please note a paywall is active.

Washington DC

Tue, 22 Nov 2022 13:49:18 GMT

AUCD Health and Equity Conference in Washington DC, USA.

As someone living with Fetal Alcohol Spectrum Disorder (FASD) I never imagined I would get some of the amazing opportunities that I have and particularly one in the area I adore and is my passion, which is FASD Advocacy, Educating, Supporting and talking about my own personal lived experience.

Recently I was offered a huge opportunity to do something I had never done before and that was to attend and co-present t he Association of U niversity Centers on Disabilities (AUCD) conference in the USA. Living with FASD I knew that there were going to be many challenges that I would need to o vercome , but I was excited to do that as it was another step towards a little more independence. M uch of the organisation o f flights and accommodation bookings were done by the individuals I was co - presenting with , which took a lot of stress away - as that Is something I would have struggled with.

For me what caused me the most anxiety wasn’t the long 8hr flight or meeting up with people I had only ever worked with on zoom, but it was the packing and a lot of the anxiety I think was my tunnel vision that I was terrified of sticking out or not looking the part this caused a lot of daily unpacking repacking before the trip as my anxiety would get the best of me.

The day of the flight I had gotten a handle of my anxiety of not fitting in or packing the right amount of clothing and I had decided if I forgot anything not much I can do about it now. After a 3hr drive to Dublin Airport we arrived I had made sure to wear my Sunflower Lanyard as someone with a hidden disability who gets sensory overloaded, severe anxiety and panic attacks and also has zero sense of direction the airport is a lot to handle so knowing that this airport recognised the Sunflower Lanyard and what it meant eased a little of my anxiety. When I explained to the flight agents they were more than helpful ensuring that I didn’t have to stand in the long noisy lines and made sure to explain to me all the process so that nothing would be a surprise and honestly that was one of the highlights of the trip was for the first time I had a positive experience in the airport environment where I wasn’t left drained and just an anxiety mess.

The AUCD Conference itself was inspirational to be in an environment where people want to learn about, and I mean really learn about all disabilities physical and hidden disabilities and they wanted to hear from the lived experience from the people themselves and wanted to know in what areas improvements need to be made researchers asking the questions on what they are missing and how can they improve and make things easier for individuals with disabilities. In America FASD is recognised and to a certain degree supports are in place so to be able to tell people that I have FASD, and they knew what it was. I didn’t need to explain and educate them which is what I am so used to doing in Ireland when I tell people what my disability is was very refreshing.

The conference gave me a lot of hope for the future and the importance of advocating and getting officials to accept that ' nothing about us without us' is the future ; that individuals shouldn’t be just talked about and their disability referred to, but that actually hearing lived experiences their daily challenges how they have overcome or found strategies that work and how they cope when there are little to no supports . H earing that will d rive change and get the world to realise having a disability isn’t all negative and that with the right support and help we can be like everyone else . We have that right to get the same opportunities as the people around us who don’t have any disabilities get . Why can’t those of us with disabilities get the same. Equality and Equity is the key.

I was fortunate enough that I was able to attend the FASD United Red Shoe Gala where I was able to see how much work goes into ensuring that the organisation is able to continue to offer resources and also knock on those policy makers doors to get them to stand with them in recognising FASD. Allocating more financial aid would go to more individuals to help them get a diagnosis and the right support. It was a very successful evening and it also raised awareness of Ireland, and the hard work that is being done in Ireland to bring awareness, education and advocating for people with FASD.

This trip was hopefully the first of many and I really look forward to more adventures to come; and yes, I know I’ve left out parts of my experience of this visit. If I had put everything in this blog It would have turned into a book! This trip was full of overcoming challenges and just enjoying all the experiences.

FASD Awareness Webinar #12 - Andrew Keeping interviews Tristan Casson-Rennie

Sun, 20 Nov 2022 13:26:09 GMT

FASD Awareness Webinar #12 - Andrew Keeping interviews

Tristan Casson-Rennie

Tristan Casson-Rennie is an adoptive parent with his husband Scott, to 3 sons. After many years working in the rail industry Tristan took early retirement in 2014 and swapped roles with Scott to become a stay at home Dad to their newly placed third son, who has FASD. Returning to Ireland in 2018 Tristan noted the lack of any awareness of FASD across the country and frustrated, began his attempts to educate and raise awareness, which resulted in the launch of FASD Ireland on September 9th 2021.

Hear directly from Tristan about his and Scott's journey with their child with FASD and what led them to set up a new FASD organisation in Ireland which aims to reinvigorate and educate and to put some fire in the bellies of the people who can make decisions so that support can be provided for the young people, children and young adults, that live with FASD.

FASD Ireland awarded 'Seed Funding' for National FASD Hub for Ireland by Social Entrepreneurs Ireland Ideas Academy

Sun, 30 Oct 2022 13:29:15 GMT

FASD Ireland awarded 'Seed Funding' for National FASD Hub for Ireland by Social Entrepreneurs Ireland Ideas Academy.

We are delighted to announce that FASD Ireland has been awarded €6,500 towards the establishment and pilot of the National FASD Hub for Ireland by Social Entrepreneurs Ireland Ideas Academy. Thank you to everyone at Social Entrepreneurs Ireland - especially Lydia Redmond & Éabha Harper-McKeever for all of the support and guidance over the summer whilst our CEO Tristan Casson-Rennie participated in the Ideas Academy for FASD Ireland

This 'seed funding' will support the establishment of a National FASD Hub for Ireland, and plans are already in place for this essential helpline to go live during Q1 of 2023.

The National FASD Hub for Ireland will provide much needed support, signposting, advice and advocacy for families living with Foetal Alcohol Spectrum Disorder, as well as professionals working in support agencies, education and healthcare.

Sincere gratitude to this year’s sponsors Bank of America and Life’s 2 Good Foundation for supporting the Ideas Academy this year. Your generosity IS changing lives across the country.

Why does Ireland have so many cases of foetal alcohol syndrome?

Tue, 06 Sep 2022 12:12:24 GMT

Why does Ireland have so many cases of

foetal alcohol syndrome?

Ireland is estimated to have the third-highest prevalence of FAS in the world, with about 600 babies born here each year with the syndrome.

The unequivocal message that no amount of alcohol is safe for a foetus at any stage of pregnancy is a challenging one to deliver in our drink-fuelled culture.

Ireland is estimated to have the third-highest prevalence of foetal alcohol syndrome (FAS) in the world, behind Belarus and Italy. About 600 babies are believed to be born here each year with FAS, which is the most severe and visibly identifiable form of a group of alcohol-related birth defects known as foetal alcohol syndrome disorders (FASD).

For every baby born with FAS, there are likely to be another nine or 10 babies born annually for whom FASD is a hidden disability. Their neurodevelopmental issues, due to the toxic effect of alcohol crossing the placenta, will not become apparent until around ages five to 10 years.

Drinking alcohol during pregnancy is the single greatest preventable cause of neurodevelopmental disorders, says public health consultant Dr Mary O’Mahony, who is the national clinical lead on FASD prevention. But she believes the focus needs to be on the consumption of alcohol generally, with 2019 figures from the World Health Organisation putting Ireland at sixth highest in the world in that regard.

“The likelihood of you drinking during pregnancy is based on your drinking pattern before you got pregnant,” she says. In the case of the 40 per cent of pregnancies in Ireland which are unplanned, “you will be pregnant before you realise you are pregnant and your normal drinking pattern will have continued”.

It takes only 67 women to drink during pregnancy for one child to have FAS and just 13 women to drink during pregnancy for a child to be born with FASD, she says, citing research based on a systematic review and meta-analysis of studies, published in the Lancet in 2017. The greater the quantity consumed the higher the risk but parents-to-be are advised that only cutting out alcohol can eliminate that risk. For researchers in this field, the gold standard for studying causal relationships, randomised controlled trials, are not possible because clearly it would be unethical to administer alcohol to some pregnant women to quantify the risks better.

It’s almost 50 years since the term foetal alcohol syndrome first appeared in an article published in the Lancet in 1973. A group of US paediatricians and psychiatrists used it to define facial abnormalities and developmental delays they were observing could occur in babies born to alcoholic mothers. Since then, the more that is learned through neuroscience, the more compelling the case for avoiding exposing unborn babies to any alcohol. Canada and Australia have led the way in addressing the problem, due to high rates of alcohol use in their indigenous populations.

Before we knew any better, doctors in Ireland used to recommend Guinness to pregnant women as a source of iron. In more recent times, there was a perception that the real risk from alcohol was confined to the first trimester, when the structure of the brain is developing. “We now know that is actually wrong. Alcohol at all stages can affect the brain of the developing foetus,” says Dr Aisling Sheehan, head of the Health Service Executive’s alcohol programme. Yet, expectant parents will still hear mixed messaging, not only from family and friends but even from some health professionals.

A 14-point action plan for the prevention of FASD, due to be presented to the board of the HSE in mid-September, includes steps to raise awareness not only among the public but also through training of professionals. Meanwhile, Sheehan is keen to use International FASD Day on September 9th to flag not only the risk of the “hidden disability” but also other dangers that come with the consumption of alcohol in pregnancy, including miscarriage, stillbirth and preterm birth.

“Health professionals need to be better informed about alcohol generally and FASD specifically,” says Dr Hugh Gallagher, a GP who specialises in addiction medicine and is a member of the HSE’s FASD prevention expert advisory group. He would like to see GPs introduce screening for alcohol use among all patients and to routinely advise women that “if they are planning or hoping to become pregnant, they cease alcohol and remain alcohol-free subsequently [through the pregnancy]”.

This should not be seen as some sort of paternalistic or punitive approach to women, he stresses, because this information is very important and knowledge changes attitudes. “It is not about shaming, punishment and fear — it’s quite the contrary. It’s doing a disservice to women to be denying them this information, in terms of prevention especially.”

Where the problem of FASD already exists in the family, an awareness of why and the availability of appropriate timely interventions are needed. Although the expert advisory group’s remit is prevention, it is also seeking better recognition, early intervention and supports for the estimated 4.75 per cent of children who are affected. O’Mahony says they are looking at 19 areas where support could be introduced or increased. There is no neurodevelopmental disorder register in Ireland but Gallagher refers to a study in Manchester that suggested the prevalence of FASD is twice the rate of autism spectrum disorder.

At the extreme end, babies with FAS will be born smaller than expected, says O’Mahony. Facial features include small eyes, a thin upper lip and the lack of a vertical groove between the nose and lip. However, she continues, “a child born with FASD will be of expected birth weight and will look normal. For some of them it’s only when they get into the problem-solving years of national school — third and fourth class — that their deficits will start to manifest. Invisible deficits would be attention and memory deficits; difficulty with abstract concepts such as maths and time; poor problem-solving skills; and difficulties learning from the consequences of their actions.”

One of Tristan Casson-Rennie’s adopted children has FASD and it was his family’s experiences that prompted him to set up a support organisation, FASD Ireland, in September 2021. (It has no connection with a previous group operating under the same name.)

“I have endured several years of frustration not being able to get recognition for my son’s condition. After a lot of challenges I decided obviously I wasn’t the only parent going through this,” he says. However he notes his family has been “absolutely blessed” in having a really good Camhs unit locally, in Ennis, Co Clare.

As Chief Executive of FASD Ireland, he has been surprised at the level of interest it has attracted over the past year, not just by parents but also professionals such as teachers and social workers keen to learn more. The organisation would encourage any couple trying for a baby to both stop drinking alcohol, to support each other. Actor Russell Crowe, Prince Harry and Boris Johnson are among public figures who have declared they abstained from alcohol during a partner’s pregnancy.

One of the key issues for families dealing with FASD, says Casson-Rennie, is that it is not recognised as a disability in this country and the National Council for Special Education doesn’t see it as a condition that requires SNA support. “Families are struggling right now; they cannot get a diagnosis, they cannot get recognition and they cannot get help — from health, education and welfare.”

He talks about “the difficult conversation” that he believes health professionals are inclined to sidestep if FASD is seen as a possibility. A potential overlap between it and autism and ADHD is particularly sensitive.

In the broader context of alcohol use, Sheehan says, “we know from research that healthcare professionals find it more difficult to talk about alcohol than other topics such as smoking and physical activity. There is a wider issue in society that we need to tackle.”

She also acknowledges the stigma that potentially comes with a diagnosis of FASD — “There are not many other diseases that would have what caused it in the name. It can be really difficult for birth mothers.” Most of the people that they come across with a diagnosis are families who have fostered or adopted children.

“We know that the children are there — they are in our existing disability, mental health, paediatric services, just not necessarily with the diagnosis of FASD,” she adds.

As to those most at risk of having a baby with FASD, O’Mahony says these include women who have enough disposable income to keep alcohol in the house. “It is often the educated, professional women who continue to drink during pregnancy.” Students and those in lower socioeconomic groups are also vulnerable on the basis that they are more likely to binge drink.

She has proposed to the National Screening Advisory Committee that screening for alcohol in pregnancy be introduced to enable appropriate conversations, or the provision of supports and follow-ups, where necessary. It is already policy, under the maternity strategy, to have drug-alcohol liaison midwives in every maternity hospital but that has not yet been achieved everywhere outside Dublin.

A pregnant woman’s urine is checked at every GP or hospital visit, O’Mahony points out, so this could be used for screening.

“It’s about helping, not blaming,” she adds, reiterating that ultimately we have a societal problem. “As a country we really have a difficulty with alcohol and the best way we can reduce FASD in children is to bring our alcohol consumption right down.”

‘Everyone knows someone with FASD’

A mother of two children with foetal alcohol syndrome disorder (FASD), who wishes to remain anonymous, outlines the impact on their daily lives:

Our morning routine has to be like clockwork, to avoid any meltdowns. Trying to keep things as calm as possible has proven to be the best strategy. Many children with FASD have major problems with sleep; our eldest tries his best not to sleep if he can help it, which results in behavioural problems. He’s better now than he was, but it’s still a big struggle for him.

Over the summer we have been practising with them to put their cereal in their breakfast bowls by themselves. It does seem strange at their ages (preteens now) that they are only at this stage. Like all children with FASD, their adaptive functioning skills are way behind their chronological ages.

The impact of being exposed to alcohol in utero also means they have many physical conditions, including very poor muscle tone or hypermobility, which impacts on their ability to lift, pour, carry, all of the mundane tasks we take for granted. We scoured shops for just the right shape and size of container to put the cereal in so that it was easier for them to lift and pour. They haven’t yet mastered pouring in the milk — we haven’t yet found the right jug!

We ensure the two of them use the bathroom and eat their breakfast separately because being in the kitchen or bathroom together can be quite chaotic. Extreme sensory issues associated with FASD means that basic hygiene such as teeth brushing and washing hands is a huge deal, requiring a lot of instruction and reassurance. Getting dressed can be a struggle, especially if buttons or zips are involved, as the poor muscle tone in their fingers makes it very challenging.

Our children have no concept of time. Any kind of pressure to hurry up can result in a meltdown, as they seem to internalise it intensely. Throw mobility problems and lack of spatial awareness into the mix and preparing them to get out the door and into the car without an incident is a daily challenge.

To look at our children, the needs aren’t obvious. It’s hard when we get strange looks from other parents due to our two squabbling over a game or toy designed for much younger children. Social skills are an issue, coupled with poor emotional regulation.

Children with FASD don’t understand consequences, neither do they respond well to typical rewards, much to the dismay of the “Supernanny star chart” brigade. They don’t get anything abstract so don’t learn the same way as other children with hypothetical situations. Explaining “If you do this then this can happen, etc” is met with a dead-eyed glazed look.

Children with FASD also have many cognitive deficits, such as processing delays. This is especially true of instructions: they literally miss some of the words being said, and hence may do the opposite of what they’re being asked. This can look to the uninitiated as defiance. Teachers can’t believe that these overly sociable and verbally articulate (as many children with FASD are) children can have any serious cognitive deficits. The children are very adaptable in groups and will copy and mimic what their peers are doing, making it even more difficult to explain the challenges to teaching staff who receive minimal training in special education needs and zero training in FASD. This means every incident following sensory overload or a lack of understanding due to processing delays, is met with disciplinary action.

Even though we have professional reports stating our children’s needs, challenges and requirements, and professionals have spoken to the schools on our behalf, we are met with: “Well, we’ve never come across this type of disability before.” Considering how Ireland rates globally regarding alcohol consumption during pregnancy, we know that schools are coming across it, they just aren’t recognising how it presents in behaviour and learning challenges.

With heavy hearts, like many parents of children who require additional support, we’re starting to accept that ours may never be able to live independently. They are charming, funny, resilient and determined and have masses of potential but, due to a totally preventable condition which has damaged their brains irreversibly, we know the odds are stacked against them. With no pathway for assessment or diagnosis of FASD in Ireland we have been forced to seek and pay for services abroad. Meanwhile, with so much time being taken up with tending to the children’s care needs, trying to navigate the health and education systems to gain the required support, and research and implement strategies, both of our careers have had to be put on the back burner, impacting on earnings and causing further stress.

We try to stay as positive as possible and not get too overwhelmed with worries about the future but it is a major concern. What would greatly help is for all professionals involved with families, including GPs, nurses, healthcare staff, paediatricians, teachers, SNAs, childcare workers, social care workers, etc, to have FASD training and to listen to parents’ concerns. More importantly, all relevant government ministers and their departments should educate themselves on the issues involved.

Everyone in Ireland knows someone with FASD; you just don’t recognise it.

The original article is located here .

FASD Headquarters and Training Centre opened by Minister of State for Disability, Anne Rabbitte TD

Wed, 31 Aug 2022 12:21:30 GMT

FASD Headquarters and Training Centre opened by Minister of State for Disability, Anne Rabbitte TD

On Wednesday 31st August, the Headquarters and Training Centre of FASD Ireland located at 51 O’Connell Street in Ennis, County Clare were officially opened by Minister of State for Disability Anne Rabbitte TD.

Guests included Clare Colleran Molloy (Mayor of Ennis), Margaret O’Brien (CEO Ennis Chamber of Commerce), Cathal Crowe TD and Senator Timmy Dooley. There were also representatives from the HSE, Ennis CAMHs and Rice College, as well as the Haven Hub and NOVAS.

The event commenced with a welcoming speech from Tristan Casson-Rennie, CEO of FASD Ireland, and this was followed by an introduction to the Hidden Disabilities Sunflower Scheme by Paul White, CEO of HDSS.

Mayor Clare Colleran Molloy extended her welcome to the town of Ennis and shared that she also has a hidden disability and was very pleased that both FASD Ireland and Hidden Disabilities Sunflower has chosen Ennis as a base.

Cathal Crowe TD, a former primary school teacher, spoke about his experience of FASD and hidden disabilities in the Classroom and in public life, as well as reflecting on the early days of FASD Ireland and how he was both supportive and encouraging growth of the social enterprise.

Minister Rabbitte shared her views of the importance of recognising FASD, and also her concerns that Ireland needs to take note of a simple message: Alcohol should not be consumed whilst pregnant. Minister Rabbitte went on to say “We are ready for the Sunflower, I think Ireland is in a really positive space when it comes to disabilities at the moment.”

Minister Rabbitte concluded her speech by unveiling a plaque commemorating her visit to the offices.

Tristan Casson-Rennie said “We were honoured to have Minister of State for Disability Anne Rabbitte and so many people involved with FASD attend our official opening. Minister Rabbitte’s speech recognising FASD as a disability gives hope to the many thousands of people in Ireland living with FASD”

FASD Ireland gave guests advance screening of their campaign that was launched on 1st September across all major social media platforms to recognise World FASD Awareness Month. This is titled “You never drink alone when you are pregnant” and gives advice that if you are thinking of having a baby or are already pregnant, then you should stop drinking alcohol.

Ireland Budget 2023

Sun, 31 Jul 2022 14:25:43 GMT

With the 2023 budget on the horizon, what is FASD Ireland doing to help families living with FASD?

Minister Paschal Donohoe is due to produce the 2023 budget two weeks early on 27th September as a result of the cost of living crisis that Ireland - and the rest of the world - finds itself in. It is said that this budget

" will balance helping people with protecting the economy. " So, with the promise of "helping people" this year's budget is of particular importance to families living with FASD.

FASD Ireland has sent a budget submission to Minister Paschal Donohoe for consideration. We expect that it is the first time that Foetal Alcohol Spectrum Disorder will have been considered in any Irish budget. This is important for a couple of reasons:

Essentially, FASD Ireland is proposing that an entirely new support framework needs to be established:

We have asked Minister Donohoe to work with Minister Stephen Donnelly (Health) to provision funding for a National Clinic for FASD to be operated by the HSE, so that families are no longer directed to or have to pay for a referral and join the lengthy wait list to the UK's FASD Clinic in Surrey. Ireland is the only country in the developed world NOT to recognise FASD and to have a specialised clinic where a diagnosis can be obtained. Reflecting that FASD is a country-wide issue, we would like this clinic to be centrally located in the midlands, close to railway/bus and motorway access to ensure that no family has to travel from one side of the country to the other in seeking and obtaining a diagnosis.

We have asked Minister Donohoe to work with Minister Josepha Madigan (Special Education Needs and Inclusion) and make a provision for additional funding to the NCSE, which will allow them, for the first time, to recognise FASD as a life-long neuro-developmental disability AND to provide SNA support so that children and young people with FASD can be supported into mainstream education. This will ensure that children and their families will have the right support in schools for their condition - not falling through the cracks and subsequently excluded from Education.

We have asked Minister Donohoe to work with Minister Anne Rabbitte (Disabilities) to provision funding a National FASD Hub for Ireland, which FASD Ireland already has proposals to to open during Winter 2022. This will allow for a 7-day/week telephone helpline for families, young adults, educators, employers, social workers and practitioners to call for help, signposting and advice. The National FASD Hub for Ireland will also engage in Public Health Campaigns to prevent FASD jointly with the HSE, as well as delivering training to educators and social workers about FASD Awareness and how to support young people and families living with FASD.

As is so often the case with FASD, providing support needs people to work together, to make that leap of faith and abridge unexpected challenges. Supporting FASD requires cohesion from multiple agencies.

It is now time to start building the scaffolding that will support the estimated 247,000 people living with FASD in Ireland.

Notes:

There have been many requests and attempts for an up-to-date and accurate FASD prevalence survey in Ireland. Whilst the latest numbers we may use are from a WHO estimate carried out in 2017, we recognise they are still only an estimate. The numbers we quote most often are that 600 babies each year are born in Ireland with FASD; and that 4.75% of population in Ireland have FASD. Finally, 82% of women in Ireland drink alcohol whilst pregnant. All these numbers rightly shock to the core, however, we must remember that they are all now 5 years out of date, and sadly we expect the numbers to have increased..

If a person is diagnosed with FASD in Ireland - which is unlikely given the lack of a diagnosis pathway - then currently they are excluded from any support in Education as FASD is not recognised as a disability by the NCSE. Whilst this in itself is in direct contravention of the Equal Status Acts 2000-2018 (Education), it is the reality of lived experience, and as a result practitioners are being slewed towards a diagnosis with secondary or co-morbid conditions including ASD, ADHD and Tourettes, to ensure the young person receives some support. Until this anomaly is addressed by the NCSE, the numbers of people diagnosed with or expected to have FASD will continue to be unrealistically low.

Sunflower Conversations with Chantal from Hidden Disabilities Sunflower Scheme

Thu, 14 Apr 2022 12:26:40 GMT

Sunflower Conversations with Chantal from

Hidden Disabilities Sunflower

Jan Griffin a birth parent of a child with FASD and Tristan Casson-Rennie, CEO of FASD Ireland joins Chantal from the Hidden Disabilities Sunflower Scheme to talk about all things FASD.

We discuss what FASDs are, some of the features and characteristics of FASD, many of the concerns around education, and what it is like being both a birth parent and an adoptive parent of a child with FASD.

Click HERE for more information about the Hidden Disabilities Sunflower.

NearFM - Darren J Prior talks to Tristan Casson-Rennie about FASD Ireland

Thu, 10 Mar 2022 13:33:05 GMT

NearFM - Darren J Prior talks to Tristan Casson-Rennie

about FASD Ireland

Near FM 90.3 is Community Radio for NorthSide Dublin

website or twitter

Cork 96fm Opinion Line - Interview with PJ Coogan

Fri, 04 Mar 2022 13:36:58 GMT

Cork 96fm Opinion Line - Interview with PJ Coogan

New Paragraph

Foetal alcohol syndrome survey is 'first of its kind'

Sun, 09 Jan 2022 13:42:11 GMT

Foetal alcohol syndrome survey is 'first of its kind'

ANN MURPHY

Sunday 9th January 2022

A survey is being conducted to establish the experience of people living with or caring for someone with foetal alcohol spectrum disorder in Ireland. The move coincides with the introduction of minimum unit pricing for alcohol in recent days and against a backdrop of an estimated 600 babies a year being born here with FASD.

The research is the first of its kind in Ireland and is being conducted by Dr Katy Tobin of Trinity College Dublin in collaboration with Alcohol Forum Ireland and ENDpae, a support group for parents and carers of people with the disorder in Ireland. The study is also being promoted by recently-established FASD Ireland, set up in September to support children, young adults and families with the condition.

Dr Tobin said the research has been funded by the Irish Research Council under a New Foundations grant.

She said: “It is aimed at families – primarily at the parent or caregiver, to give their experience of caring for someone with FASD.

Limited research

We have very limited research in Ireland regarding FASD.” She said it is difficult for a proper diagnosis of FASD to be made in this country and there are no concrete figures available on its prevalence.

The most recent figures were published by the World Health Organisation in 2017 and estimate that approximately 600 babies are born each year in Ireland with the syndrome. Ireland ranks third out of 187 countries for prevalence of FASD, behind South Africa and Croatia.

Dr Tobin said: “The survey asks about the diagnostic journey and it looks at the cost involved in getting a diagnosis as well as the costs of caring for someone with FASD.” It also looks at how someone with FASD is catered for in society, including in education, as well as the experience of carers and parents.

Dr Tobin said similar research has already been undertaken in England and Scotland. The survey got underway in November and will conclude later this month.

Founder of FASD Ireland, Tristan Casson-Rennie, said while the introduction of minimum unit pricing for alcohol was to be welcomed, is only one part of alcohol legislation that needs to be implemented.

He said: “The pricing is a part of what needs to happen. From an FASD point of view, the important action of the Public Health Alcohol Act 2018 was product labelling. That still has not happened."

"Section 12 of the act is very specific in that it requires bottles of alcohol to be labelled that if you are pregnant or trying to conceive, you must not drink alcohol."

"That has not happened and the latest estimate for that happening is 2024 which is very annoying given that we as a nation need to minimise the risks to babies being born. That public health campaign should be ongoing, irrespective of legislative proceedings.”

In 2020, the Australian and New Zealand Ministerial Forum on Food Regulation decided to introduce mandatory pregnancy warning labels on alcoholic beverages." "

Mr Casson-Rennie added: “Every year that we lose, even on a conservative estimate, is 600 babies a year being born with FASD. As a society, we simply cannot afford the costs that come with supporting these children and young adults through life, caused by alcohol use during pregnancy or when trying to conceive a baby.” Parents and caregivers wishing to take part in the study can do so here .

Link to original article here

Is the NCSE still fit for purpose?

Fri, 10 Dec 2021 15:47:38 GMT

We have unearthed some astonishing facts this week...

It is highly probable that some of you reading this will have never heard of the National Council for Special Education, or as it is more widely known as the NCSE. This vital cog in the wheel of providing support for children and young people with Special / Additional Educational Needs (S/AEN) is more than a little obscure from most parents. Unless you have had any interaction with a Special Educational Needs Co-ordinator (SENCo) in school, then you will rarely come across or have any contact with the NCSE at all during your child's education.

So what does the NCSE do? Essentially the NCSE sits inside the Department of Education, specifically within the remit of the Minister of State for Special Education and Inclusion. The NCSE was established in 2003 to improve the delivery of education services to people with special education needs (SEN) arising from disabilities, with a particular emphasis on children. A local service is provided through a national network of Special Educational Needs Officers (SENO's) who interact with parents and schools and liaise with the Health Service Executive (HSE) in providing resources to support children with special educational needs.

Sounds great doesn't it? But does the NCSE actually achieve what it set out to do?

Consider this. A child starting primary school in September is identified by their teachers as having S/AEN. A meeting is held with parents and would usually include the class teacher and SENCo. A decision is made to refer the child to Child and Adolescent Mental Health Service (CAMHs) for a community paediatrician to undertake a clinical assessment of the child. A further referral may be made to an Occupational Therapist (OT) by CAMHs. A diagnosis may or may not follow. A multi-agency meeting will take place to discuss support arrangements in the school using existing limited resources. The SENCo will then consider if a Special Needs Assistant (SNA) is required to support the child in school and will make an application to the NCSE for funding using the 'Exceptional Review' process. The NCSE will usually require reports from the teacher, SENCo, CAMHs, OT and often by an Educational Psychologist from the National Educational Psychologist Service (NEPs) There is also a form to be completed by parents or carers of the child.

The application takes a couple of weeks to put together; co-ordinating reports from agencies takes time. The application is submitted to the local SENO, who usually, but not always has knowledge of the school and experience of working with the SENCo. The application process is so cumbersome that if the application is incomplete, then it will simply be rejected outright and closed down rather than any request for further information.

Often no one will get told that this has even happened!

Providing all of the information with the application is in order, an assessment will take place. Often the SENO will visit the school to see the child in-situ and to examine any further paperwork held on file. The SENO will finally make a recommendation to fund an SNA position, however that may be a part or whole position. However, unlike the application process, the SNA allocation is not specific to the child, but to the school. The NCSE is unable to ring-fence the SNA to the child, and must allow the school's Board of Management (BOM) together with the Management to decide how best to use the SNA in the school.

It would not be unusual to have reached mid-December. So three months has elapsed where the child has not been fully supported. In a young child, starting primary school, three months during early education is a lifetime.

There are some serious flaws in this process.

Now, let's roll forward to a new child starting at the same school the following September.

The process for the school is to apply for an 'Exceptional Review' again, except this time both children will be assessed as a new application. School would reasonably submit a request for two SNA positions. This application requires a full review to be carried out internally by the SENCo for each child and their primary care need - in primary care need order (Interesting question arises here. Is the SENCo actually equipped to do this?) A plethora of paperwork is generated for all concerned, some of which will be sent to the parents or carers to complete and with little notice. The exceptional review application for parents is simply not fit for purpose and focusses mostly on a physical disability rather than any type of neuro-developmental disability. There is significant emphasis on "Improvements made by the child in the past six months." This indicates the intention of the form is to consider withdrawing existing support rather than improving it. There is little room for the parent or carer to explain strategies that are working, the impact of the SNA on school and home, or what additional support is needed.

Once the forms are completed, the SENO attends the school, and along with the SENCo will walk around the school to observe the identified children in their classroom environment. The SENCo will make available all the children's academic history and notes around significant events that may be of interest. Any updated reports from CAMHs, NEPs or the OT are also made available. The Exceptional Review is then considered by the SENO upon their return to the office before an adjudication is made.

So, two children, both identified with S/AEN, with professional reports that would recommend full time SNA support for both children. It seems fairly certain that the next letter from the SENO to the school would say "The Exceptional Review has identified that your SNA allocation has been increased to TWO" However in 9 out of 10 cases, this does not happen. Most SENOs are under such funding pressure, that they respond with "Your Exceptional Review has identified that your SNA allocation has been increased to ONE and ONE HALF"

When questioned about this type of outcome recently, this is what a SENO had to say about it:

"I carried out the SER review with another NCSE colleague at *SCHOOL*. This is standard procedure when a request for additional SNA support is made by school management. The school was forwarded all relevant parent consent forms, these forms are forwarded to all schools which apply for additional SNA support.

The decision as to which pupils have access to SNA support is now a decision made by the BOM and Management team in each individual school. This decision is based on Primary Care needs. Individual allocations are not given to individual pupils. Access to an allocation of SNA support is given to a school. The outcome of the review on this occasion was an increase in SNA support. Any specific queries which you may have regarding your child can be discussed with the SENCO at the school.

So essentially, the SENO makes the decision about funding and the SNA support for the child/ren in question, and then passes responsibility for their decision around SNA provision to the school BOM and Management Team. School then has to juggle any deficit in SNA funding.

Also note how the SENO doesn't refer to the amount of increase in the correspondence with the parent. In this case it was an increase of 0.5 of an SNA. This means if all of the children with S/AEN needed a full time SNA, then they will all now lose a share of support with school struggling to decide where to make the cuts.

Finally, and here is the absolute breath-taker!

At the end of Primary School, a young person with S/AEN may have had SNA support for some or all of the previous 5 years of their time in education. Essentially, they will have been supported through their primary education so that they could take part in mainstream education and start their academic journey. So what happens during the transition to Secondary School? The assumption would be that the support would simply continue...

Wrong!

The young person will arrive at post-primary school in September, and work hastily begins immediately for the SENCo to make an "Exceptional Review" application to the NCSE for increased SNA support . This means that the young person can be in post-primary for the first three months without any support whatsoever, and no guarantees of any substantive support going forward after the application.

Imagine that young person, finding themselves in new surroundings, with new students, new teachers and no support at all. It is an incredibly difficult time for every child transitioning schools, however compounded when there is evidenced S/AEN and or a disability

. How on earth can the NCSE claim that they meet their original purpose? Remember this:

"The NCSE was established in 2003 to improve the delivery of education services to people with special education needs (SEN) arising from disabilities, with a particular emphasis on children."

Urgent legislation is needed so that SNA funding provision is unique to the child or young person,

not the school. It should not be for the BOM or Management of the school to decide where best to allocate funding applied for in an individual child's name. The support must continue across transition to any other school that the child attends whether it be a home move or to post-primary.

There should be particular emphasis on recognising all disabilities including neuro-developmental disabilities like FASD, and accepting that they are lifelong without a cure. Improvements come through implementing the right strategies and supports, not because the disability disappears.

The NCSE are failing in every respect.

The NCSE is no longer fit for purpose.

We would love to hear your own experiences of the NCSE and your local SENO. Please get in touch through twitter, facebook or email.

NCSE website can be found at

www.ncse.ie

Support from Deputy Cathal Crowe, TD, County Clare

Sat, 11 Sep 2021 12:44:00 GMT

Support from Deputy Cathal Crowe, TD, County Clare

FASD Ireland - Launch 9th September 2021

Thu, 09 Sep 2021 11:11:14 GMT

FASD Ireland launches - 9th September 2021

This is the video released on our launch day - September 9th 2021 - World FASD Awareness Day.

Hear from our Founder, Tristan Casson-Rennie about the plans for FASD Ireland.

Please help us to get the message out there across Ireland. Like, comment and share!

#LetsGetIrelandTalkingAboutFASD