Facility would be a ‘centre of excellence’ where people suspected of having foetal alcohol spectrum disorder could access assessments and diagnosis
Ireland needs a national clinic to address the needs of people living with foetal alcohol spectrum disorder (FASD), a charity focussed on the condition has said.
In a new report documenting the unmet needs of people with the disorder, FASD Ireland CEO Tristan Casson-Rennie said that the condition has been a hidden disability here for too long.
The publication, which includes interviews with volunteers impacted by FASD, highlighted alarming gaps in awareness, healthcare provision, education and employment support for people affected by prenatal alcohol exposure.
“For too long, FASD has been a hidden disability in Ireland – it’s present in every community, but too often it’s gone unnamed, misunderstood, or ignored,” said Mr Casson-Rennie.
FASD Ireland CEO Tristan Casson-Rennie
“One priority shines through loud and clear – Ireland needs a national FASD clinic. A place where people of all ages suspected of living with FASD can access the right assessment and diagnosis without having to fight to get a referral to a clinician, or worse, receiving an incomplete or inaccurate diagnosis, and as a result, the wrong care or medication.
He described the proposed clinic as acting as a national centre of excellence for people with FASD. “Without that first step, families are left wandering in the dark, clinical appointments and services are being overwhelmed, lacking the knowledge or ability to help, and people with FASD are denied the understanding and opportunities they should have.”
As part of the report, researchers from FASD Ireland and the RCSI interviewed carers of those living with FASD, including parents of young children. They detailed low awareness and understanding of the disorder among schools and community groups, leading to additional challenges in their education and wellbeing.
One respondent said that they were left in tears after a meeting with their child’s teacher, adding that he felt that the school did not want their son there.
He said that his ‘heart collapsed’ at the prospect of bringing their son to a special school. “To me, I always saw potential in him, and then for somebody to say ‘no, he has an intellectual disability’, I couldn’t see that. For me, he was bright,” Rowan said.
FASD refers to a range of adverse neurodevelopmental conditions associated with alcohol consumption. Ireland has one of the highest prevalence rates globally, with between 2.8 and 7.4 per cent of people estimated to be living with FASD here.
When the public were asked in an online poll if they think men can drink when trying for a baby, almost two-in-five (39 per cent) said yes.
In an in-person survey of 50 random respondents in Dublin – which the researchers believe is likely to include a much lower proportion of people with a medical background – 72 per cent believed that it is safe for men to continue drinking when trying for a baby.
Previous international research has found that suicide disproportionately affects people with FASD. Those with the disorder have an average life expectancy of just 34, with a 2016 study finding that 15 per cent of these deaths are caused by suicide, seven per cent from substance abuse, and four per cent from mental and behavioural disorders.
On the back of this report, FASD Ireland called on TDs and Senators to acknowledge FASD as a national health and social care priority.
The charity also called for funding to establish diagnostic and support services for everyone affected by prenatal alcohol exposure and for public health education and professional training initiatives to be supported.
It also wants FASD to be integrated into disability and neurodiversity policy frameworks.
