A blank canvas of possibility lies ahead of most children when they are born. But for some, that canvas has already been filled in in the early days of pregnancy, according to those with experience of children and young people with fetal alcohol spectrum disorder (FASD).
Now, a new advocacy organisation to support children, young adults, and families living with FASD across Ireland has been established in Clare, by parent Tristan Casson-Rennie. FASD Ireland opened its doors in Ennis on January 17.
According to figures published by the World Health Organization in 2017, it is estimated that approximately 600 babies are born each year in Ireland with the syndrome. Ireland ranks third out of 187 countries for prevalence of FASD, behind South Africa and Croatia.
It is also estimated that up to 40,000 people with FASD are currently living in Ireland.
FASD Ireland and another organisation working to raise awareness of the condition, ÉNDpae, are adamant that not enough is being done for people affected by FASD. ÉNDpae’s David Gerry says there is not enough recognition that alcohol is unsafe in pregnancy, despite it being known for more than 50 years that alcohol is toxic to a fetus.
He points to a 1973 US study in which fetal alcohol was termed a teratogen — an agent that causes an abnormality in the fetus.
There are several indicators of the disorder, including attention deficit hyperactivity disorder (ADHD) and low body weight as well as poor co-ordination, poor memory, problems at school (particularly around maths), and learning disabilities.
Advocate Michele Savage says children born with FASD can have problems in school, as well as with organisational skills.
“Their baseline for anxiety is hugely increased,” she says, pointing to a report carried out by US academic Ann Streissguth in 1996 which found that when children with FASD reached the age of 12, 94% of the surveyed cohort had mental health issues. Some 80% of those surveyed could not get or retain a job.
She also says that young people with FASD find it difficult to live independently and deal with responsibilities such as utility bills and rental contracts.
However, she stressed that children with FASD also have gifts and talents.
“They can be erudite and eclectic. They have huge gifts. They could be anything if given huge supports.”
Tristan Casson-Rennie, the founder of FASD Ireland, stressed there should be no blame or shame when it comes to FASD.
“There are risks here and they were not known about so we now need to do something. The whole point of the organisation is to reinvigorate that education campaign, to put some fire in the bellies of the people who can make those decisions so that support can be provided for the young people, children and young adults, that now have to live with FASD.”
He said FASD is a contributor to the numbers in prison and is also linked to suicide.
“These children are not making their way through school very well,” Mr Casson-Rennie said. “They often get excluded or expelled, they can become isolated away from family, away from friends. They lose their support network and crime beckons, and drugs beckon, and these young people end up in prison.”
He has met previously with the minister with responsibility for disabilities, Anne Rabbitte. He is expected to meet again with her and says he would also like to meet with Minister of State for Special Education and Inclusion, Josepha Madigan, to highlight the education needs of people with FASD.
Mr Casson-Rennie is particularly concerned that the National Council for Special Education (NCSE) does not recognise FASD as a disability which requires support in schools.
“For a child to get support with FASD, they actually have to apply to the NCSE and say they have a secondary diagnosis, for example ADHD.”
This, he said, needs to change. He also says awareness of FASD in Ireland is at an all-time low, with many people in responsible public positions unaware of the disability or what it means to live with it.
The HSE established an expert advisory group on FASD in August 2020.
The group includes representatives from the HSE’s addiction services and social inclusion unit, and from the faculties of paediatrics and of public medicine of the Royal College of Physicians of Ireland, as well as the Institute of Obstetricians and Gynaecologists.
Other groups represented on the expert group include the Irish College of General Practitioners, the Office of the Nursing and Midwifery Services Director, the HSE’s health and wellbeing services, and primary care areas, as well as the HSE’s National Women and Infants Health Programme. Tusla is also represented on the body, as are representatives from the alcohol health and wellbeing sector.
A spokeswoman said the advisory group has so far overseen the development of a HSE statement on alcohol and pregnancy which is currently being finalised for dissemination in the coming weeks:
"This will be disseminated in the next couple of months,” she said.
“Other areas of work to date include collaboration with Katy Tobin in TCD on the design and dissemination of the survey with carers of people with FASD, currently being disseminated, and the development and dissemination of a resource for maternity services to raise awareness of FASD and promote brief interventions with pregnant women.”
Results of the survey will inform professionals on the drawing up of training and professional development supports.
The focus of the group for the coming year will include the development of supports for pregnant women who use alcohol, as will the development of business cases for developing services and supports for people with FASD and their families, she said.