Healthcare and FASD: Care That Sees the Person

A short appointment, a crowded waiting room or instructions given only once can be enough to make healthcare and FASD feel overwhelming. For a person with Foetal Alcohol Spectrum Disorder, these are not small inconveniences. They can affect whether they can explain pain, remember advice, attend follow-up care or feel safe enough to return.

FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. Its impact is different for every person, but challenges may involve memory, attention, sensory processing, communication, emotional regulation, sleep, coordination and understanding cause and effect. Many people also have significant strengths, interests and abilities. Good healthcare recognises the whole person, builds on those strengths and adapts care to their needs rather than expecting them to adapt alone.

Why FASD-informed healthcare matters

FASD is often missed or misunderstood. A child, young person or adult may arrive in healthcare settings with anxiety, repeated injuries, sleep concerns, mental health challenges, physical symptoms or struggles managing medication. If staff only see the immediate issue, the underlying neurodevelopmental needs can be overlooked.

This can lead to what families know all too well: being passed from service to service, retelling their story, or hearing that a person is being “non-compliant” when the real challenge is memory, executive functioning, sensory overload or communication. These experiences can be exhausting and can leave families feeling judged or isolated.

FASD-informed care does not mean assuming every concern is caused by FASD. People with FASD deserve the same thorough investigation of pain, illness and changing health needs as anyone else. It means avoiding diagnostic overshadowing - where a known disability is wrongly used to explain away new symptoms - while also making sensible adjustments to how care is offered.

Appropriate assessment can bring clarity

There is no single test that confirms FASD. Appropriate assessment is a careful, multidisciplinary process that considers confirmed prenatal alcohol exposure where information is available, development, health history and functioning across areas such as learning, memory, communication, sensory processing and daily living skills.

Not every family will have access to full information about prenatal alcohol exposure. This is particularly relevant for adoptive, foster and kinship families, and it should never become a reason to dismiss concerns. Healthcare professionals can still listen to developmental history, consider a person’s presentation and advise on the most suitable referral route.

A diagnosis can be helpful because it offers an explanation and can guide support. But practical help should not be delayed while a family waits for assessment. If a person is struggling to manage appointments, understand information or cope with sensory demands, reasonable adjustments and supportive strategies can begin now.

For parents and carers, it may help to keep a brief record of concerns, patterns and what makes things easier or harder. This might include sleep, eating, pain, medication effects, school or work pressures, sensory triggers, communication needs and previous assessments. Bring it to appointments if you can, but do not feel that you must present a perfect account. You are sharing lived knowledge that matters.

Communication is part of treatment

Clear communication is not an optional extra. It is part of safe care. A person may agree with a clinician because they want the conversation to end, not because they understand what has been said. They may forget verbal instructions by the time they reach the car park, or struggle to describe symptoms in a typical way.

Small changes can make a meaningful difference. Professionals can use plain language, offer one point at a time, allow extra processing time and check understanding by asking the person to explain the plan in their own words. Written information is most useful when it is short, specific and practical: what will happen, when it will happen, who to contact and what to do if plans change.

It also helps to ask the person what supports them. Some may want a parent, carer, advocate or trusted person present. Others may need a quieter space, a first or last appointment, reduced waiting time or clear notice before touch or examinations. These adjustments support dignity and can prevent distress escalating unnecessarily.

Supporting the whole health picture

Healthcare needs can overlap. Someone may be managing anxiety alongside chronic pain, poor sleep, gastrointestinal concerns, hearing or vision needs, dental care, epilepsy, medication, trauma experiences or substance-use challenges. Their care should be coordinated wherever possible, with each professional understanding that the person may need support to manage several plans at once.

Medication requires particular care. Difficulties with memory, time awareness, reading instructions or recognising side effects can affect safe use. A simple medicines routine, visual prompts and the involvement of a trusted supporter, with the person’s consent, may be appropriate. It depends on age, capacity, independence and the person’s own wishes. The aim is not to take control away, but to scaffold success.

Mental health care must also be accessible. Emotional distress is not a character flaw, and behaviour that appears challenging may be a sign of overload, fear, pain, confusion or unmet needs. Approaches that are predictable, relational and sensory-aware are more likely to help than approaches based on punishment or assumptions about motivation.

Healthcare and FASD across life stages

The need for informed care does not end in childhood. Young people moving from paediatric to adult services can lose familiar relationships and face new expectations to organise appointments, prescriptions and health decisions independently. Transition planning should begin early and be gradual. A young person may appear verbally confident while needing significant help with planning, understanding risk or putting advice into practice.

Adults with FASD can be especially invisible within services. Some may never have received a diagnosis, while others may have been diagnosed but still encounter professionals who have had little training in FASD. They deserve healthcare that respects their autonomy while recognising where practical supports are needed.

For older family carers, the concern is often long-term: who will understand their adult child’s needs when they are no longer able to provide daily support? These are important conversations. Healthcare teams can support families by recording communication needs, involving appropriate supporters and recognising that independence may look different for different people.

What families can reasonably ask for

Families should not have to become experts simply to access compassionate care, but many do become skilled advocates through necessity. It is reasonable to ask for information to be repeated or written down, for appointments to be arranged with accessibility in mind, and for staff to communicate respectfully with the person and their support network.

It is also reasonable to say when a plan will not work. A complex list of instructions, an unexpected phone call or a referral letter full of jargon may create more barriers than support. Ask for the next step to be explained plainly. If possible, leave an appointment knowing one or two clear actions rather than carrying a long list that no one can realistically manage.

Professionals do not need to know everything about FASD before they can make a difference. Curiosity, humility and a willingness to listen to the individual and their family are strong starting points. Training matters, but so does the everyday decision to see behaviour in context, believe people when they describe their needs and make care more accessible.

No person should have to prove they are struggling before they are offered understanding. When healthcare makes room for differences in memory, communication, sensory needs and daily functioning, it becomes safer and kinder for everyone. You are not alone, and asking for care that sees the person behind the appointment is a reasonable place to begin.

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.