When Maggie May McHugh was told she had Foetal Alcohol Spectrum Disorder (FASD) by her social worker, at the age of 15, everything started to make sense.
Foetal Alcohol Spectrum Disorder (FASD) can happen when alcohol in the mother’s blood passes to her baby through the placenta. It is a lifelong condition that can not be reversed.
“Up until that point, I didn’t understand why I was not like everyone else. I made mistakes. I couldn’t learn the way everyone else did. I’d have meltdowns.”
Currently, it is not a recognised disability in Northern Ireland or the Republic of Ireland.
‘Move away from blame and shame’
The Department of Health said currently “there is no specific treatment for FASD”.
“There are supports in place for children with FASD as with other neurodevelopmental conditions.”
While the DOH said diagnosis is frequently underreported “early diagnosis and support can, however, make a difference, so once the condition has been diagnosed a team of professionals can assess the child’s needs”.
Ms McHugh said discovering she had FASD was “a weight lifted”.
“I stopped blaming myself for something that wasn’t my fault.”
She said living with FASD has been very isolating because it is not a recognised disability which has meant no extra support.
Most people, she said, do not know what it is or how it can affect people.
“I have to be reminded to eat all the time,” she said.
“I have no concept of money or time, so I’m always late for things or super early and I spend money like it’s going out of fashion.”
But Ms McHugh believes it is important to remove the “blame and shame” directed towards mothers and focus on providing support for those living with the disorder.
“I am a huge advocate for not stigmatising or stereotyping birth mums. My biological mother was not given the support she needed to have a clean pregnancy.”
Seventeen-year-old Reece said his adoptive parents have always been “open and honest” about him having FASD.
He said he especially struggles with mental maths and his memory.
“I can remember things that happened five or six years ago” he said, but could easily forget what he went up the stairs to get.
Reece feels frustrated that “there is no awareness of FASD in Ireland” which is something he has been trying to change.
He said he likes to focus on the “positive aspects” of life and is getting ready to go to college to study cosmetology.
“There’s pros and cons to every single thing that’s about in life,” he said.
Reece’s mum, Alison McNamara, runs a support group for children and families affected by FASD in Northern Ireland and recently held, what is believed to be, the first conference on the issue here.
“There’s no help or support, which is why I started our little support group,” she said.
“We need to have FASD as a recognised disability over here so we can have the same resources as autism and ADHD.”
She also believes the “hidden disability” could be eradicated if the right information was given to people about the dangers of drinking whilst pregnant.
Tristan Casson-Rennie, a father of two adopted children with the condition, agrees that more needs to be done.
He set up FASD Ireland four years ago after discovering there was no where in Ireland to get a diagnosis.
“Both the NHS and the HSE don’t have any clinicians that are able to diagnose currently and so that means that people have to leave the island, perhaps to go to Great Britain, to the clinic in England.”
He said it is easy to recognise some of the conditions that come with FASD “but if we only support those in isolation then we’re not looking at the wider picture”.
It is unclear how many people are living with FASD but some studies estimate between two and four per cent of the population in the UK could be affected.
Alison McNamara would like to see more resources given to young people like Reece and Ms McHugh who are living with the condition.
“Look at these children today who haven’t had the right help and see how they’re thriving. They are amazing. Imagine how much more amazing they can be with the right help and support.”