Ms Paula Leonard:

I am here to speak about one of the most stigmatised of all health issues. It is important to state at the outset that no mother intends to cause harm to her child and that foetal alcohol spectrum disorders, FASDs, are not the result of an uncaring act. There are complex reasons that women drink during pregnancy and I hope we will return to them later in the discussion. Prenatal alcohol exposure is the leading cause of preventable intellectual disability in the world. 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. FASDs are brain-based impairments resulting from prenatal alcohol exposure. Alcohol has been documented as a toxic teratogenic substance for more than 40 years. It passes freely through the placenta during pregnancy and results in a range of learning and neurological disabilities, behavioural deficits, difficulties with regulation of mood and behaviour, cognitive deficits and impaired executive functioning.

As outlined on page 3 of our submission, people with FASD are at an increased risk of a range of difficulties across their lifespan. More than half will serve jail sentences or be confined in drug treatment or psychiatric facilities as adults. The prison experience for people with FASD must be understood within a context. Many of them have difficulties with impulse control, an inability to learn from punishment and discipline and difficulty understanding and adhering to rules. Some 92% of people with FASD will receive a secondary formal mental health diagnosis. Although FASDs are permanent, diagnosis, early intervention and support have been proven to mitigate associated risks, including poor mental health, addiction and suicide. Early diagnosis can help to identify other associated health conditions. In fact, 428 co-occurring conditions have been identified across 127 studies of children affected by prenatal alcohol exposure, including epilepsy, heart defects, compromised auditory function and compromised immune system.

In an international review conducted last year, Ireland was featured as one of five countries with the highest prevalence of foetal alcohol syndrome, FAS. The latter is at the most severe end of the FASD spectrum, with the greatest alcohol effects, including physical malformations. It is estimated that 600 babies are born with FAS in Ireland each year and that 40,000 people are living with the condition.

The numbers of those affected by FASDs, ranging in nature from mild to severe, could be ten times that figure because international evidence indicates that for every case of FAS, there are at least ten cases of FASD.

We are delighted to be here in the context of a review of neurological supports and services in Ireland. The World Health Organization, WHO, recommends action to deal with neurological disorders associated with the consumption of toxic compounds, including alcohol. A number of recommendations to this committee are made and shown on page 4 of our submission. The key recommendation is for clear clinical guidelines on the diagnosis of FASD to be developed and agreed. The development and adoption of clear diagnostic criteria will assist clinicians in the assignment of more accurate diagnoses of FASD and pave the way to more widespread early intervention, improved prevention efforts and cost savings.