09/04/2026
Yesterday, our CEO Tristan, along with FASD Ireland Advisory Board Chair Kate FitzHerbert and FASD Ireland’s Expert Medical Advisor Professor Farhana Sharif met with Minister of State with responsibility for Disability Emer Higgins T.D., a representative from the Department of Children, Disability and Equality, and a representative of An Tanáiste Simon Harris TD.
During the meeting the following topics were discussed:
* The risks of prenatal alcohol exposure for men and women and the total lack of public health education in Ireland about FASD.
* That 381,000 people live in Ireland with Foetal Alcohol Spectrum Disorder (FASD) and 1 in 10 babies are born with a form of FASD today.
* Home-grown FASD related research from Royal College of Surgeons in Ireland (RCSI), Trinity College Dublin, University of Galway and underway at Maynooth University
* FASD Ireland provides the only national telephone helpline service for people living with FASD, their parents, carers and professionals working in the sector. In addition, FASD Ireland is the only organisation for clinicians to refer patients for ‘wrap around’ support after diagnosis or when FAS/FASD is suspected.
* That FASD is not rare, however it is rarely diagnosed. Ireland has the highest prevalence in Europe (up to 7.4%) and the second highest in the world behind South Africa. The global average is 0.8%
* That most people living in Ireland with FAS/FASD are misdiagnosed as living with Autism (ASD) or ADHD, simply because HSE primary care services are not asking questions about the conception or pregnancy in their assessments of the child.
* Ireland is the only country in the developed world that doesn’t recognise FASD (Minister Hildegarde Naughton, 26 March 2025 PQ14312/25) and this needs addressing urgently.
* That the 4-digit diagnostic code from University of Washington / Susan Hemingway is the preferred diagnostic tool we should be using in Ireland.
* The funding model for FASD Ireland, and the funding available to provide services during 2026. With adequate funding, FASD Ireland can scale services across most Government Departments and begin to address the €4.6bn that failure to recognise and support people living with FASD is costing the Irish economy each year.
(We know that Minister Jack Chambers would be our biggest fan!)
We had a very candid and at times challenging conversation and would like to sincerely thank Minister Higgins for not only making the time to meet with us, but for providing an environment where we could voice our concerns honestly and openly. We look forward to engaging with Minister Higgins again soon, and of course, keeping FASD on the agenda as Ireland’s most prevalent neuro-developmental disability.