Time to end the stigma & have a national conversation on Foetal Alcohol Spectrum Disorder

FASD Awareness Day

ENDpae & Alcohol Forum Ireland Call for Action

This September, in the shadow of some very worrying international reports placing Ireland in the top three countries for Foetal Alcohol Spectrum Disorder; Alcohol Forum Ireland together with ENDpae are calling on people across Ireland to end the silence and shame and begin to talk openly and honestly about the prevalence of Foetal Alcohol Spectrum Disorder in the Irish population.   

ÉNDpae is an all-island parents’ and carers’ support group dedicated to supporting people affected by FASD and their families. It also promotes education for professionals and public awareness of the condition and this year the group have been involved in a number of initiatives that will contribute to change in both understanding and awareness of the condition.     

On international FASD awareness day on September 9th, the group, with Alcohol Forum Ireland will share the first promotional clips from an upcoming series of short films that are in production and will be released later in the Autumn.     Speaking ahead of Sept 9th,  David Gerry highlighted the aim of the film project ‘These short films will be hugely beneficial in bringing the voices and experiences of people with FASD and their families to a wider audience.     Since the beginning, we have advocated for a ‘nothing about us, without us’ approach to our work on FASD.      We want to be at the policy making table, we want to be seen, we want to be heard’.  

In the short trailer which will be released on Sept 9th, Maggie May, a young Irish woman who was diagnosed with FASD at age 5, highlights the need to move beyond blame and shame ‘My mom drank while she was pregnant.   And I knew my mom was an alcoholic.    I loved my birth mom.   She was a lady, she was an inspiration.  Why would I blame her?   At that era, doctors were still saying it’s okay to drink, so why would you go against what a doctor says?’  

The group are keen to highlight the fact that, while dependent drinkers are at increased risk, no amount of alcohol is safe during pregnancy. Prenatal alcohol exposure (pae) can cause a wide range of medical conditions in children. These do not diminish with time and are life-long.  FASD is an umbrella term for these conditions.    In a 2019, The Lancet, published a study that found that, of the 50 countries for which data was available, Ireland was in the top five countries for drinking alcohol during pregnancy.  The same year, JAMA Paediatrics medical journal, estimated that 47.5 children are born with FASD per 1,000 births in Ireland.  Only South Africa and Croatia are identified as having a higher occurrence.  This compares with a global average of 7.7 per 1,000, according to the JAMA Paediatrics study.   Reflecting on the high numbers of people here in Ireland living with this hidden disability most of whom will never receive an assessment or diagnosis, David Gerry said ‘there is such a long way to go in understanding this condition here in Ireland and we are calling on government to begin to develop services and supports for those impacted’.   

This Autumn, ENDpae will be delivering training to foster carers, youth workers, social workers and others as a way of raising awareness of what supports are needed and what strategies can support young people with FASD in schools and out of schools settings.    This work is supported by the Department of Children, Equality, Disability, Integration and Youth through the What Work’s funding initiative.  

To find out more or for comment     David Gerry 087 1096193      www.endpae.ie

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