New Member Spotlight: FASD Ireland

We are delighted to introduce our newest member to DFI - FASD Ireland. 

Commenting on their membership CEO Tristan Casson-Rennie said, "I am thrilled that FASD Ireland has become a member of Disability Federation of Ireland. I look forward to working together with the team at DFI to further raise awareness of Foetal Alcohol Spectrum Disorder, highlighting the risks of prenatal alcohol exposure and of course advocating for people who live with the condition to receive the help and support that they need.”

About FASD: 

FASD Ireland was established in September 2021 with three core aims, to raise awareness of FASD, to reduce the prevalence of FASD, and to support people living with FASD. In providing support, FASD Hub Ireland was launched in March 2023 with the endorsement of Minister of State with responsibility for Disability Anne Rabbitte TD, and funded in part by Social Entrepreneurs Ireland Ideas Academy and Action Lab. This provides a national telephone helpline operating Monday to Friday between 10am and 4pm for anyone who lives with FASD, any who cares for someone living with FASD, and anyone who works with someone living with the condition.

The FASD Ireland Hub 

A large volume of calls are received by FASD Hub Ireland when families face challenges or are in crisis. These are usually as a result of not being able to access support whilst waiting to be seen by CDNT’s or CAMHs clinicians. We are able to provide help by working with the Parent or Carer and providing strategies for them to be a more effective external brain for their child; helping to de-escalate and integrate the child back into education or the home setting without further altercation or upset.  Parents and Carers really benefit from receiving one-to-one support and guidance with a member of the FASD Ireland team, and this is not always acheivable without funding owing to our office location and available resources. We know that interventions with the child are often ineffective, their brain has been damaged by the prenatal alcohol exposure. That is why we believe the most effective intervention and support for the child or young adult is for us to work with Parents or Carers and the team around them.

About Foetal Alcohol Spectrum Disorder (FASD) 

Foetal Alcohol Spectrum Disorder (FASD) is Ireland’s most prevalent, yet only preventable neuro-developmental disability. FASD is caused by the consumption of any amount of alcohol at anytime from 6 weeks before conception (either parent) and for the duration of the pregnancy. In a JAMA Paedeatrics survey conducted in 2017 by WHO Region, Ireland was estimated to have a FASD prevalence of 4.75% of population; three times as many people diagnosed with Autism in Ireland. Many people do not know or recognise that they are living with FASD. Following Covid, in September 2022 the HSE revised the prevalence estimate annoucing up to 7.4% of population, reflecting the increase in the number of babies being born in Ireland together with the surge of home alcohol consumption during lockdown. It is estimated that 2,700 babies were born in Ireland in 2021 with FASD. We must remember that no parent sets out to harm their baby, and FASD is a result of extremely poor public health awareness messaging, and a lack of education about the risks of prenatal alcohol exposure prior to conception and during pregnancy.

For many years, a key facet of diagnosis was linked to facial dysmorphia, however we now know this to be recognisable in only 10% of cases. The remaining 90% begin to show symptoms from the age of 5, and these are fully recognisable when the child reaches 10 years old. Parents, Carers and Primary School Teachers, as well as Community Paedeatricians will often notice that a child is missing milestones in their development, particularly in the areas of Cognition, Behavioural, Sensory and Processing. Executive Functions are poorly developed and this is because the brain has been impacted by exposure to alcohol in-utero. FASD is a spectrum and affects every individual differently.

Ireland is unique in that whilst having perhaps the second highest prevalence of FASD in the world, it is the only country in the developed world not to recognise FASD as a neuro-developmental disability. There are no statutory guidelines for diagnosis in Ireland, and there is no provision for support or recognised careplan. Whilst HSE Agencies including CDNT’s and CAMHs are able to meet with Children and Young Adults, there is limited understanding about FASD specifically and without statutory guidelines any attempt of diagnosis is unable to be verified. Most existing diagnosis of FASD in Ireland have been obtained outside Ireland, where FASD Clinics exist and these include London UK, Barcelona Spain and Toronto Canada. FASD is Ireland’s silent epidemic, and most people living with the condition are already known to the HSE and other agencies that provide support for one reason or another. Owing to a lack of recognition of the condition, FASD is overlooked and often diagnosed as one or more of the recognised 428 co-morbid conditions instead.

ENDS