To mark International Fetal Alcohol Spectrum Disorder Awareness Day, Natalie Davies and Aliy Brown discuss the challenges around diagnosing, treating, and preventing fetal alcohol spectrum disorders (FASD), and the progress Scotland has made in building support services for young people, their families, and professionals such as social workers, educators, and clinicians.
SSA: Can you tell our readers about the role of FASD Hub Scotland?
Aliy: “FASD Hub Scotland was launched in June 2019. We’re funded by the Scottish Government to provide a support service to parents and carers throughout Scotland who are living with and looking after any child, young person or young adult who’s got a history of prenatal alcohol exposure, with or without a diagnosis of FASD. We also provide support, signposting and training to professionals, in particular to educators, social workers and third sector charities.”
“We have a tiered service. Tier one includes an online presence through our website, social media, and YouTube channel – where we share information on FASD and parenting strategies, and where we signpost and share our own and other people’s resources. We also run a helpline which is open to all parents and carers – biological, foster, kinship, step and adoptive parents. Anybody in Scotland can ring the helpline. We get calls from elsewhere too, and we’d never put the phone down on somebody.”
“Our tier two is more focused around direct support with families. We provide one-to-one support for carers, which they can request through completing a self-referral form. We’re not doctors. We’re not social workers. We’re not there to make a diagnosis or arrange any of that for them. We’re very much there to give them peer-to-peer support along the way. Most people contact us for support around education, diagnosis, or learning strategies to support and help them and others manage and support their child with their challenges. We’ve also got a number of different training modules that we make available free of charge for people in Scotland, with a small charge for anyone outside Scotland. Another key service within tier two is a closed Facebook group, which enables parents and carers to connect with people that have the same shared experience. In May of this year we also set up a Facebook group for anyone who’s 17 and over with FASD. This was established in collaboration with Carol Hunter, who is an adult with FASD.”
“Tier three enables us to facilitate access to enhanced therapies for parents and carers, so things like counselling or getting a reflective consultation with our clinical psychologist, and make other courses free to attend or subsidized. Within our therapeutic budget we also have the ability to put on events for families and young people. For example, this year – in collaboration with the Wave Project in Scotland – we put over 25 young people through six weeks of surf school, which helped them increase their confidence, make new friends, feel better about themselves, and overcome fears. These are the kind of things we do with our therapeutic budget.”
You mentioned that your service is open to families with a child who has a history of prenatal alcohol exposure, but not necessarily a diagnosis of FASD. Why is it so important to reach people who do not have an official diagnosis?
“Many services are based on there being a diagnosis. For FASD that can still be a hard thing to get. FASD is the most common neurodevelopmental condition, yet the most under known about. You could probably ask people on a street corner ‘What does ADHD stand for?’, or ‘Tell me something about autism’, and they’d be able to answer something. Ask them ‘What does FASD stand for?’ or ‘What is fetal alcohol spectrum disorder?’, and no one knows what you’re talking about. This is the reason why the service isn’t just restricted to families who have a diagnosis in place.”
“Part of the diagnosis is having strong evidence of prenatal alcohol exposure, and for some families – in particular adoptive and foster families – they just might not have that information. That history may not have followed the child; it may not have been captured at the point when it could have been. So, some people will have a child that they’re caring for who has FASD, but they may never get a diagnosis.”
Can you tell us more about the challenges around diagnosing FASD?
“Well, from a diagnostic point of view, Scotland is actually ahead of other countries. We have the Scottish Intercollegiate Guidelines Network (SIGN) national clinical guidelines which came out in January 2019. And, we have a children’s neurodevelopmental pathway that came out in May 2021, which names FASD along with autism, ADHD and many other disabilities.”
“We’re also really lucky in Scotland to have the Fetal Alcohol Advisory and Support Team (FAAST), based in Edinburgh University. They’re funded through the Scottish Government in the same way as the Hub, and we work really closely with them. FAAST is a team of researchers, paediatricians, and clinical psychologists, who’ve all got an in-depth knowledge of FASD, and they’re the people who are training our doctors and allied health professionals.”
“There is still, in some parts, a reluctance to give a diagnosis of FASD, or an element of practitioners being unsure about how they would have those difficult conversations. Unlike another conditions, we know the cause of FASD. So some people feel that as soon as you say ‘FASD’, it tells you how it happened, and there’s stigma and blame with that. But, a child with FASD does not equal a mother who has alcohol dependence or a mother who made a ‘bad choice’. If you’re in that 50 odd per cent of people that aren’t planning to get pregnant, you’re not making choices around alcohol and pregnancy.”
“We could both have a pregnancy and drink alcohol, and one of us might have a child with an FASD diagnosis but the other might not. No doctor can determine what will happen, and that’s why the message is: ‘No alcohol, no risk’. That is the safest thing.”
“Also, just because someone drinks alcohol, does not mean their child will have FASD. There’s so many more factors at play. Your own personal genetic makeup. The genetic makeup of the child you’re carrying. Whether you’re under stress. Whether you’re taking good care of your body. Whether you’re fit and healthy. Whether you have other conditions. There are so many other maternal factors. So we could both have a pregnancy and drink alcohol, and one of us might have a child with an FASD diagnosis but the other might not. No doctor can determine what will happen, and that’s why the message is: ‘No alcohol, no risk’. That is the safest thing.”
So, in Scotland you noted having the FASD guidelines, the neurodevelopmental pathway, and the advisory support team. Are there any other positive developments that you’ve seen in recent years, or that you can see on the horizon?
“Yes, absolutely. There has been a lot of progress in Scotland. For example, we’re seeing a number of FASD organisations being set up at a local level, which is fantastic because people need the opportunity to walk out of their front door and meet people with shared experience. There’s also exciting things on the horizon around building awareness of FASD. I know that the Queen’s Nursing Institute Scotland, for example, recently received some funding to be able to promote alcohol-free pregnancies.”
“I think one thing that is missing in Scotland is a clear public health campaign. Lots of people still don’t really understand why it’s not safe to drink during pregnancy – and we’re talking about the whole term of pregnancy, from the point of conception to birth. In Manchester, there’s been Drymester (‘helping parents-to-be go alcohol free’). They’ve won loads of awards for their alcohol-free pregnancy messaging. It would be great to see that in Scotland.”
Is there anything that you’d like our readers to know about the work of FASD Hub Scotland, or what you’ve got coming up throughout FASD awareness month in 2021?
“We’ve got lots and lots going on.”
“We’ve got three webinars for people to join: one on the 8th September that’s aimed at prospective adopters or prospective foster and kinship carers; on the 15th we have an ‘ask any question’ webinar where people can put questions to a mixed panel of professionals, parents and carers who’ve all got insight into caring or working with young people with FASD; and on the 29th we have a session specifically for kinship carers.”
“We have a survey that’s going to be open from the 1st to the 31st September, which is examining the experience of parents and careers in relation to a diagnosis of FASD. You could have a child with a diagnosis, they could be currently in the assessment process, they could have gone through the assessment process but did not end up with a diagnosis, or they might have a child with prenatal alcohol history but never pursued the assessment process. There hasn’t been a survey like this in the UK previously.”
“On the 9th September we’re launching our FASD animation, developed with people with lived experience – parents, carers and young people – which tells a story through the eyes of a young person with FASD called Charlie. The voiceover has been done by a young person from Scotland who’s got FASD. We’re really excited to be releasing this. It’s the first of its kind in the UK, and the first FASD animation in Scotland. Look out for ‘FASD Makes Me, Me’ on the 9th.”
“We have a social media presence, and will be sharing facts about FASD. The tag on social media is ‘#FASDThinkDifferently’, which recognises that an individual with FASD thinks differently and therefore those who are parenting, supporting, caring for them also need to think differently. That’s very much the message through the animation too.”
“We will also be updating our website with information and blogs by members of staff and parents about their experience of parenting an individual with FASD. And, we’ve got over 30 videos from people with FASD, advocates, and professionals, which will be coming out during the month. This includes the Scottish FASD network, which is a network we launched in May this year to bring together third sector organisations who are directly or indirectly supporting and working with people with FASD.”
Aliy Brown is FASD Project Manager and Service Lead for FASD Hub Scotland, which is managed by Adoption UK Scotland. Follow the work of FASD Hub Scotland on Twitter: @FasdhubScotland #FASDWorkingTogether #FASDThinkDifferently
This article was published as part of The Pregnancy Edit for September 2021. If you are interested in writing a blog or participating in an interview about alcohol-related harm in pregnancy for the SSA website, please contact Natalie Davies at natalie@addiction-ssa.org.
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