Failing to identify fetal alcohol syndrome has consequences far beyond health system

The lack of action on a pathway for fetal alcohol syndrome is showing in so-called 'difficult' and 'defiant' young people who were never diagnosed 

The HSE's 2022 position paper estimated that Fetal Alcohol Spectrum Disorder may affect between 2.8% and 7.4% of the Irish population.  File picture

Are we doing enough to identify the needs of vulnerable children and young people before they reach crisis point?

This question is particularly important for young people who have experienced trauma, neglect or instability. Some may also have an undiagnosed neurodevelopmental condition affecting how they process information, understand risk and respond to the world around them. 

Fetal Alcohol Spectrum Disorder (FASD) must be part of that conversation. The HSE describes FASD as an often invisible disability associated with lifelong physical, mental, educational, social and behavioural difficulties. Its 2022 position paper estimated that FASD may affect between 2.8% and 7.4% of the Irish population. 

Yet it remains significantly underdiagnosed. That should concern every parent, teacher, social worker, Garda, judge, probation officer and policymaker.

FASD can affect judgement, impulse control, memory, attention, learning, social communication and the ability to understand consequences. These difficulties can become increasingly significant as a vulnerable child moves through adolescence and into adulthood.

A young person with FASD may be articulate, physically healthy and confident. At the same time, they may struggle to anticipate consequences, learn from experience, manage time or money, understand cause and effect, recognise social boundaries or assess risk. They can also be particularly vulnerable to peer pressure, manipulation and exploitation.

Too often, behaviour arising from these difficulties is interpreted simply as a young person who "knows better" or needs to "take responsibility". Accountability matters, but so too does understanding whether an underlying disability is affecting a young person's capacity to process information and respond as others expect.

This is particularly important for children entering State care.

Their medical and developmental histories can be incomplete. Foster and kinship carers, social workers, teachers and other professionals may not know whether there was prenatal alcohol exposure or recognise the signs of FASD.

Consequences

Without that understanding, difficulties with concentration, memory, impulsivity, language or following instructions can be interpreted as deliberate defiance. A child can quickly acquire labels: disruptive, difficult, challenging.

Those labels can follow them through childhood and adolescence while the underlying cause of their difficulties remains unidentified.

FASD Ireland has consistently called for a national diagnostic pathway and co-ordinated model of care. There have been discussions about diagnosis, services and a whole-of-government response. But discussion is not delivery.

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The consequences of failing to identify FASD extend far beyond the health service.

When a child enters State care, prenatal alcohol exposure should be considered alongside other developmental, medical and psychological factors. 

When a child repeatedly struggles at school, FASD should be among the conditions professionals are equipped to consider. 

When a vulnerable young person comes into contact with addiction, social care or justice services, professionals should have the training to recognise when an underlying neurodevelopmental disability may be contributing to their difficulties.

This is not about excusing harmful behaviour or retrospectively attaching diagnoses to individual cases. It is about recognising vulnerability early enough to intervene effectively.

Prevention

Nor can this conversation become one of blaming women.

FASD is preventable, but pregnancies can be unplanned and alcohol use can occur before a woman knows she is pregnant.

Women may also be experiencing addiction, trauma, coercion, domestic abuse, poverty or inadequate support. 

Prevention therefore requires education, compassion and accessible support rather than stigma or judgement.

Men, families and wider society also have a role in creating environments that support alcohol-free pregnancies. Prevention cannot be treated solely as the responsibility of women.

The Irish Government knows FASD exists, that it is significantly underdiagnosed and that its effects can be lifelong. 

Research and policy work in Ireland have identified the need for prevention, professional training, diagnosis and an appropriate model of care. 

There has been increasing acknowledgement of the issue. What remains missing is implementation at the scale required.

Diagnosis

Ireland needs a national diagnostic pathway and model of care, supported by training across health, education, disability, social care and justice.

FASD should be considered when assessing children entering or already in State care. Schools need the knowledge and resources to distinguish behaviour arising from neurological disability from deliberate defiance. 

Professionals working across social care and the justice system need to understand how FASD can affect comprehension, memory, communication and decision-making. 

Families should not have to navigate a fragmented system in which nobody takes responsibility for co-ordinating support.

After tragedy or crisis, there is an understandable desire to find a single explanation. Reality is rarely that simple.

Tristan Casson-Rennie: 'Ireland needs a national diagnostic pathway and model of care, supported by training across health, education, disability, social care and justice.' Picture: Eamon Ward

We cannot know the full circumstances behind every young person's story, and we should resist speculation about individual cases. But we can ask whether our systems are sufficiently equipped to identify vulnerability before a child reaches crisis.

That means looking upstream.

Preventing the harm associated with FASD is not only about preventing prenatal alcohol exposure. 

It is also about ensuring that a child living with an invisible disability does not become an invisible young person and, eventually, an invisible adult, recognised by the State only when something has gone badly wrong.

Ireland has spent years talking about FASD. The children, young people and families who need support cannot wait indefinitely for that discussion to become action.

• Tristan Casson-Rennie is CEO of FASD Ireland.