FASD (Fetal Alcohol Spectrum Disorder): Understanding the Diagnosis

In this ‘In Conversation’ podcast, Sandra Butcher, Chief Executive of National FASD, and Rachel Jackson, a member of National FASD Adult and Young Adults with FASD Advisory Committee and a lived experience perspective, provide insight into FASD (Fetal Alcohol Spectrum Disorder).

In the United Kingdom, September is celebrated as FASD Awareness Month, with 9 September 2023 internationally recognised as International FASD Day.

Discussion points include:

• What is FASD, its prevalence, and its presentation?
• The risks of alcohol consumption whilst pregnant.
• A compelling lived experience perspective of living with FASD, and the importance of understanding a diagnosis.
• Why FASD is commonly not recognised and often not understood.
• The importance of a correct diagnosis and support available.
• What the FASD manifesto is and what you can do to help people with FASD.
• The messages for mental health professionals and policymakers.

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Sandra Butcher is Chief Executive of National FASD. Sandy joined the organisation in January 2017. She has nearly 30 years of campaigning, fund-raising, media and organisational experience, working with diverse networks to create positive change in public policy. In her prior position, she served as executive director of the international Pugwash Conferences on Science and World Affairs, recipients of the 1995 Nobel Peace Prize. Most of her career has focused on the intersect of science, social responsibility and policy. Working with the Trustees, Sandy has been overseeing a realignment and expansion of the organisation’s projects. She works with stakeholders, experts, the media and policy makers to promote greater awareness of and support for those with FASD.

Sandy is mum to a teen with FASD. She and her husband are co-founders of the Hertfordshire FASD Support Network (previously the E. Hertfordshire and Area FASD Support Network). They raise awareness through a widely read blog – FASDLearningWithHope.wordpress.com. Sandy is a lay member of the NICE Quality Standard on FASD Specialist Committee. She tweets at @SB_FASD. (Bio from National FASD)

Rachel Jackson is a member of National FASD’s Adults and Young Adults with FASD Advisory Committee. Rachel has long been an advocate for people with FASD, having appeared on national media, including the BBC, and has spoken in Parliament as well.

Other resources

• The National Organisation for FASD
• Me and My FASD
• The UK FASD Manifesto for practitioners
• The UK FASD Manifesto for people with FASD
• The Time is Now: The National Perspective on Ramping up FASD Prevention, Diagnosis and Support Services
• SIGN 156 (current diagnostic guidelines in Scotland, England and Wales)
• NICE Quality Standard 204 on FASD
• DHSC FASD Health Needs Assessment for England
• FASD UK Alliance

Transcript

[00:00:25.820] Jo Carlowe: Hello, welcome to the In Conversation Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe, a Freelance Journalist with a specialism in psychology. Today, I’m interviewing Sandy Butcher, Chief Executive of National FASD; FASD stands for Fetal Alcohol Spectrum Disorder. Sandy is also a mum to a teen with FASD and served as a lay member of the NICE quality standard on FASD.

I also have with me Rachel Jackson, who is a member of National FA – FASD’s Adult and Young Adults with FASD Advisory Committee. Rachel has long been an advocate for people with FASD and has appeared on national media and spoken in Parliament.

Our podcast today coincides with FASD Awareness Month, which takes place in September. If you’re a fan of our In Conversation series, please subscribe on your preferred streaming platform, let us know how we did, with a rating or review, and do share with friends and colleagues.

Sandy and Rachel, welcome, nice to meet you. Can you each introduce yourself and give a little detail about what you do and how you are involved in raising awareness of FASD.

[00:01:45.060] Sandra Butcher: I have the privilege of running the National Organisation for FASD. And for people who don’t know what that is, we are a charity that raises awareness of the risks of alcohol in pregnancy and we also educate professionals and work with policymakers to try to ensure that there’s best practice in the policies being followed about FASD and, most importantly, we support people with FASD and their families.

We’ve just been doing quite a lot of work, I guess Rachel might tell you about it, on the “Me and My FASD Toolkit”, so we’re working with people with FASD to help others with FASD understand the diagnosis. National FASD, we also do training, we have an e-school, we have a new Alcohol and Pregnancy Toolkit, lots of things. I’m also Co-founder with my husband of our Hertford – the Hertfordshire Area FASD Support Network. And, as you said, maybe even, most important of all, I’m mum to a wonderful teenager with FASD.

[00:02:37.070] Jo Carlowe: And Rachel, what can you tell us about yourself and your involvement with FASD?

[00:02:42.990] Rachel Jackson: My involvement, as Sandy has said, is, you know, we go into meetings and talk about what would have helped us at a young age and when we were in school. So, like, the games and that, the little cards and everything, and also going to sometimes training to, you know, help Social Workers and understand what it’s like living with it and also, as you mentioned…

[00:03:11.970] Sandra Butcher: You’ve done different national media, haven’t you? You were on the BBC and…

[00:03:16.019] Rachel Jackson: Yes.

[00:03:17.019] Sandra Butcher: …other interviews and spoke in Parliament.

[00:03:19.570] Rachel Jackson: Yes, that is true. I also wrote a piece when I was younger and that has been sent around the world, pretty much, every year since I did it when I was 14. And that’s when my story started with Sandy and FASD, ‘cause that’s when I got to talk about the whole how it affected me and to talk to them about what they can do for the next generation.

[00:03:47.410] Jo Carlowe: So, you’re a young adult with FASD, how old are you, it might just be helpful to…?

[00:03:53.000] Rachel Jackson: I am 20 years old.

[00:03:54.000] Jo Carlowe: Great, thank you very much. And I will ask you, Rachel, a little bit more later what it’s like living with FASD, but I think it would be helpful to get – just to describe some of the basics. So, if I return to you, Sandy, can you explain what FASD is, how common is it, and how does it present?

[00:04:14.060] Sandra Butcher: FASD can result from alcohol-exposed pregnancies. Not every pregnancy that’s alcohol-exposed will lead to FASD, but nobody out there can yet say which one will. The alcohol can affect the brain and the body as the fetus is developing and it leads to lifelong challenges.

Current diagnostic guidelines say that you have to have pervasive and longstanding brain dysfunction, which is defined by severe impairment in three or more neurodevelopmental areas. So, the Department of Health has said that there’s no mild FASD out there. I mean, we’re really talking about lifelong brain damage and other parts of the body that can be affected as a result of the prenatal alcohol exposure. And so people with FASD need support through their lives and the early recognition and diagnosis and support changes the trajectories.

Without it, the stats can be really scary because it affects everything from motor skills to cognition, memory, you know, academic achievement, attention, language, adaptive behaviour. And, basically, the brain has trouble processing incoming information and that can lead, as you – I’m sure you’re listeners know, to some profound difficulties if the people around them don’t understand that.

You asked about the prevalence, it’s – there was a study recently done by the University of Salford where they went into classrooms and they found that two to 4% of the students had FASD. But all of the ones that they found were undiagnosed, so that means we’ve got a neurodevelopmental condition out there that is mostly unrecognised and undiagnosed and unsupported.

[00:05:43.699] Jo Carlowe: I am going to ask you more about diagnosis, but I’m wondering about pregnancy and the use of alcohol. I don’t know whether the amounts of alcohol are related to your chances of a child having FASD, and I’m wondering what the advice is, because advice to pregnant women around alcohol use has changed over the years. So, what is the current advice?

[00:06:07.360] Sandra Butcher: Well, since 2016, the Chief Medical Officers have been clear that the safest approach is to avoid alcohol if you’re pregnant or if you could become pregnant. And that’s because there’s no proven safe amount of alcohol in pregnancy. And part of the reason why they can’t do the – that kind of research to get in on this is, it’s so risky that there’s no medical ethics board that’ll approve doing this research, which should tell people listening that that means it’s an important thing.

A lot of pregnancies are unplanned. A lot of women don’t have the right information about what the risks are and there are a lot of reasons why women drink alcohol in pregnancy. And maybe in those early months they might not want others to know that they’re pregnant and there’s a lot of social pressure in this country where pub culture rules. The message is that nobody should panic, the more you drink the higher the chances are that the developing baby will be affected, but, as I said, there’s no proven safe amount.

So, if somebody has been drinking alcohol during pregnancy, whether they didn’t know if they were pregnant or they thought it was safe, they should really have that discussion with their maternity team and get some support if they need help quitting. Any time in pregnancy that they stop quitting, will always be better because the brain develops throughout the pregnancy and is vulnerable throughout the pregnancy. If you have trouble stopping, then you need to get help from a specialist service who can work with you on that.

[00:07:26.669] Jo Carlowe: Does it matter which trimester? I mean, if you find you – are there some trimesters that are more risky than others, or…?

[00:07:33.080] Sandra Butcher: No, they – because the brain develops throughout the pregnancy, then the brain is very vulnerable. It’s meant – the advice is to avoid alcohol throughout the pregnancy. Earlier in the pregnancy when the fetus is developing the bones and the facial features and all of that sort, there can be some additional things that can happen. And it’s – at each stage of the pregnancy, different parts of the fetus are growing and developing. So it used to be that all of the discussion was around when people had certain facial features, but they now know, after having done more research on this, that those facial features only develop in a very early window early in the pregnancy and they’re not a sign as to how the cognitive impact has happened because, for example, if maybe mum was – had morning sickness in the first trimester and wasn’t drinking but then started drinking later, the bones might not have been affected, but the brain development and the CNS development, central nervous system, could be impacted. So, it’s really just safest, why risk is, is how we phrase it.

[00:08:38.360] Jo Carlowe: Rachel, let’s return to you, then. So, as a young person with FASD, can you tell us what it’s like for you living with FASD?

[00:08:46.680] Rachel Jackson: So, living with my condition, it is a challenge because I’m always thinking how am I acting around other people? I always feel like I have to fake who I am being. So, if I’m in public, I’m always, kind of, wearing a mask because I know that if I show any signs of my disablement, I can, kind of, tell people will just look at me in a weird way and it, kind of, just makes me very uncomfortable. So, if I’m going to – on the trains or something, you know, I get very stressed if I miss a train or anything, I get, like, other people do, but that’s heightened because, you know, I feel like I have failed what I was meant to do. Because growing up, going into schools, you can tell by the way Teachers look at you, you feel like you’ve disappointed them because – and then that’s always put back in my mind, it’s, like, “Oh, just like when I was younger,” you know, in a way they would, kind of, go, “Rachel, come on, you need to do better than this.”

And, even today, I – after today, I will be probably in bed because my brain is so overwhelmed and stimulated that I’ll need to have – just to recover the next few days. And even if I go for a long walk, as well, all my joints will flare up because I have [inaudible – 09:47] hypermobility. And it’s just the continuous, “Oh, what if I say something?” ‘Cause I will admit, I don’t have a filter sometimes because of my brain damage. Sometimes I’m like, “Oh, I don’t know that I said something wrong.” I know that if I go out somewhere, like I said, I have to be very careful what I do, I guess, in a way. And I do worry about my future because there’s not enough resources out there.

So, I said to – I had a conversation with my mum, and said, “What am I going to do when you go?” I know that sounds quite a morbid fact, but I’m scared what will happen. I know by the time she probably goes, I’ll be a lot older and that hopefully by that time there’ll be more resources, but that plays on my mind. I’m like, “What am I going to do without my structure?” ‘Cause if I didn’t have my daily structure, I probably would either go to be on the streets or causing problems, continuous problems that could easily have been avoided, pretty much. But, yeah, I continuously wear a mask every day.

[00:11:13.769] Sandra Butcher: And you didn’t have a, kind of, typical education experience, did you, Rachel?

[00:11:18.320] Rachel Jackson: No. No, I did not, and I was home schooled from the age of ten because of how the school system failed me. Because the school system was, like, “Oh, we’ll bump you up several grades or whatever,” and I had – thankfully had one good Teacher, and that’s why I also worry is that kid’s always going to be known as the naughty kid, ‘cause that’s what I was always told. I was the naughty one, the misbehaved one, where in actuality, it was me screaming out for help.

Yes, I may have banged my head on the floor, I may have tried to climb out the window and said some things that I shouldn’t have done, but that was me screaming for help. And I don’t want to get back to that dark, dark place, pretty much, so I want to help other children not get to that point.

[00:12:05.870] Jo Carlowe: Thank you, Rachel, I’m really sorry it’s been – it sounds so challenging and what you’ve touched on is, in school, people not making allowances, including professionals, and I assume that comes down to them not understanding the condition or not recognising it.

And, Sandy, I want to come back to you because I know FASD is sometimes called a hidden disability because it often goes undiagnosed or is misdiagnosed, can you tell us more about this?

[00:12:35.800] Sandra Butcher: Yes, so, as I mentioned earlier, that study that was done by the University of Salford when they went into classrooms and they just assessed, and it wasn’t even the full range. This is considered a conservative study because some of the children who were most at risk weren’t included in the study, so they didn’t go into special schools, they didn’t have permission for some of the children that were looked after, things like that. But two to 4%, none of them had prior neurodevelopmental diagnoses.

That should make everybody sit up a little bit. And then there’s also – diagnoses tend to stop at the first one, so quite typically somebody might have an ADHD diagnosis because it’s obvious, you know, then once treatments for that don’t work, then they move on and get an autism diagnosis maybe. This is what happened to my son, and he’s not the only one who goes down this route. But then, with autism, as with ADHD, they typically don’t present as – there’s always something a little bit not quite the typical presentation and it’s because the origin of the problem is different, it’s due to the brain damage and the way the brain’s processing and – but – so, for our son it’s wasn’t until he had the FASD diagnosis finally, and he was between nine and ten when he got the diagnosis, that we really understood that he had this underlying brain damage and that we had to change everything around him and not try to keep forcing him to fit into society.

We just didn’t understand what was going on, and that’s a lot of years of not understanding somebody. And, as Rachel’s been saying, you know, the impact on the child and the further trauma that we’re giving young people by not understanding what’s going on with them is really heartbreaking.

There’s hope. The current diagnostic guidelines now, it’s called SIGN 156, and it’s, in effect, across Scotland, England and Wales and it says that “prenatal alcohol exposure should be actively considered as a possible underlying cause for neurodevelopmental delay”. So, it’s meant to flip that on its head, so that we don’t wait and think of it as the last thing, but that when there’s a young person or, indeed, an adult, but when somebody’s presenting with neurodevelopmental delay, we ask that question, “Is it possible it was an alcohol-exposed pregnancy?”

[00:14:48.010] Jo Carlowe: And can you say more about why a correct diagnosis is so important? What happens once that diagnosis is made, what support and interventions are offered?

[00:14:58.009] Sandra Butcher: Well, I’d like to say that it instantly opens up to a pathway of support. It doesn’t entirely yet, but there’s – first of all, what happens is the young person and the family supporting that young person can understand, as Rachel was saying, that this isn’t a young person – and I remember, there was a day when we were working with an Educational Psychologist, I remember I was describing to her some of the behaviours that were going on in the home, this was before the diagnosis, and she looked at me and she said – I think this was, you know, hitting and kicking and spicking – spitting and doors being kicked in and things being – and she looked at me and she said, “Why do you assume intentionality?”

And up until that, I will never forget that feeling that suddenly it had never dawned on me, since I have an older son who, you know, doesn’t have FASD, I just – but it had never occurred to me that some of these behaviours weren’t intentional. So, it helps – the diagnosis helps the young person and the family. And we’ve heard from other people, they, kind of, say that it removes – the parents, it removes this guilt and even adults who get their diagnosis as adults they say that suddenly it helps put everything into perspective for them, that they weren’t just not trying hard enough, things like that.

On the other side of things, now, with some developments that have happened, especially in England with the NICE Quality Standard on FASD, there’s meant to be continuing support that kids with FASD, they’re meant to have neurodevelopmental assessments, which can identify the specific areas where these young people are studying. If they get a proper sensory integration assessment, we can identify exactly where that processing is going wrong with that sensory input and how they can be better supported.

In speech and language, if we know what’s happening, especially with receptive language and things like that, we can understand better how – what kind of supports they need, not just at school, but also at school, at work, in the home, and these are lifelong strategies that can really help them. So, it’s – to me, a diagnosis opens the door to the right kind of support, FASD-informed support. And that includes – you know, once my son had his diagnosis and he went to a specialist school eventually, and even at the specialist school, lovely as they were, they didn’t understand FASD there. They were used to dealing with – primarily with autistic children and we had to work with them, so they could understand better what FASD-informed strategies are.

So, there is help, it’s just – I think it’s really important that we understand the FASD, and that’s why we’ve done the Me and My FASD resources that Rachel and others with FASD helped us with. And it’s to try to focus on positive behaviour support, trying to highlight peer-to-peer strategies, because Rachel can tell you, I mean, she’s helped me understand how to support my child because she’s been through it, you know, the people with lived experience are the ones who can show us what helps them. And I think it’s really important to know that people with FASD can and do achieve.

We’ve started a new magazine that we call ‘Living FASD’, and in it we feature different successes for people with FASD, and that could be everything from getting gold at the Special Olympics to learning how to swim, you know, there’s all kinds of things that are challenges and successes in the lives of people with FASD.

[00:17:58.630] Jo Carlowe: And just for our listeners, are there any particular websites if people want to look at those resources or find resources?

[00:18:05.070] Sandra Butcher: The one that’s designed for children and young people with FASD is www.fasd.me, National FASD’s website is nationalfasd.org.uk. And we have lots of information on there for practitioners, as well as for adults with FASD and for families.

[00:18:24.169] Jo Carlowe: Great, thank you. Rachel, I want to return to you ‘cause we’ve been talking about diagnosis, how did you get diagnosed and what support have you received since your diagnosis?

[00:18:35.169] Rachel Jackson: I was diagnosed when I was six and about 14 years ago there wasn’t really a lot of information because I was just told, “Oh, by the way, you have this massive label on top of your head, but we don’t know how to help you with that.” It was more different for me than it would be for someone now. You know, if I didn’t have my adoptive parents or my – the rest of my family, I wouldn’t be where I am today if it weren’t for them, you know, ‘cause it was really hard. I was just basically treated like a normal child that was just misbehaving. Even though I had four other siblings with the same diagnosis, I still felt alone. I felt alone because it, like, impacts people with the condition differently.

It’s, like, as unique as a fingerprint, pretty much. I didn’t really understand my condition ‘til I was 14, until – I think that’s when I first met Sandy. With the whole diagnosis and everything, I went into a dark place where it was just – I felt like I was, like I said, on my own and I looked like this alien, ‘cause I knew I was different from all the other kids, how I used to cope with it was talking to myself. I still do that to this day really. But I would always be told, “Hush, hush,” and I would be picked on ‘cause I did feel like if – a person on my own, just having a million eyes on me and that just, you know, affected me, and not just me, my family, but, yeah, I didn’t have a lot of support other than – you know, Social Workers not understanding my condition either was really terrible because I also had, I think it was ADHD and autistic diagnosis as well. They were like, “Oh, we can put this in place for you, but we don’t know if that’s going to help you.” I basically had to, in a way, fight the battle on my own until I said – like I said, ‘til I was 14.

[00:20:36.039] Jo Carlowe: So, you had the diagnosis, but the professionals hadn’t caught up really? But why is it important, would you say, Rachel, for someone with FASD to understand their own diagnosis?

[00:20:48.429] Rachel Jackson: I had this whole diagnosis slapped on me and it was just like – I was just left to figure out on my own what it was. Like I said, it put me into a dark place and I don’t want that happening to another child because I know how horrible it is to have no one really talk to you about it. If my parents or Social Workers or the Doctor that diagnosed me sat me down and said, “Okay, so these are the problems you’re going to have for the rest of your life, but we are here for you,” that’s where I’m, like, “I wish I had someone to go – confide in and say, “You’re not alone, I’m here,”” because I just feel, like, if you don’t have that diagnosis, that can make people do some horrible things ‘cause we’re always being told, “You’re a naughty kid, you’re doing this for attention seeking,” and, to be honest, we’re not ‘cause we can tell, you know, “Oh, I’m different from this person or I’m different from that person.” If I understood back then that, “Yeah, okay, fine, I’m different, but it makes me who I am,” and I think that is important just to say, “It is who you are, but we are here for you and we love you.”

[00:21:57.100] Jo Carlowe: People with FASD in the UK have created a manifesto, setting out how they would like Doctors, Teachers, parents and others to better support people with FASD. Can you tell us about the manifesto and highlight some of its most important messages?

[00:22:15.590] Sandra Butcher: People with FASD, from all across the UK, wrote into us and talked with us about what would help them because their voice is the one that’s been missing too much in these discussions. So, it has 15 points to it. It’s everything from, listen to us, speak slowly and calmly, be kind, keep things simple, be patient, understand why things are harder for us, know our brains are different and sometimes we don’t get it, treat us with the same respect as others, that’s one that I know Rachel was – help us to shine brighter, keep things upbeat, remember our difficulties are lifelong, don’t try, do, and learn more about FASD, and never give up on us. Those are the main points. And Rachel was part of a group of young people with FASD who launched this at a National Conference that happened last March. But, Rachel, I think some of those things are quite important to you, aren’t they?

[00:23:07.900] Rachel Jackson: Yes, definitely.

[00:23:09.140] Sandra Butcher: And do you think it’s important that you’re treated with the same respect as other people?

[00:23:14.510] Rachel Jackson: 100%, you know, we’re just human. It’s segregating us from who everyone else is, it’s not fair, pretty much.

[00:23:23.460] Sandra Butcher: And you said earlier about, you know, remembering that difficulties are lifelong, you said that as a young adult that’s something that’s starting to concern you, isn’t it?

[00:23:33.480] Rachel Jackson: Yes, it definitely is because I still don’t really understand everything and it will take me longer than an average person to understand ‘cause I’m worried about housing, when, I’m older and getting a job because I have my traumas and I get tired a lot, of course, a lot quicker.

[00:23:53.970] Sandra Butcher: I guess, the big point about the manifesto is that you want people to talk with you about your condition, right?

[00:24:00.410] Rachel Jackson: Oh yes, just take their time, ‘cause the best way you’re going to learn is by a person with the brain damage.

[00:24:07.059] Jo Carlowe: Thank you, Rachel. Sandy, just following on from what Rachel has described, what is your message to CAMH professionals? What changes might they want to make, and what should they take from our conversation today?

[00:24:21.159] Sandra Butcher: I think the most important thing is to understand that how it’s been up to this point isn’t how it’s going to be moving forward with regard to FASD. It’s been not very prevalent or prominent and high on people’s minds up to this point. And, you know, I understand that the services are overwhelmed and overburdened and underfunded and all of that, we get that. But the thing is that people with FASD are already in the systems, they’re just frustrating themselves and everybody else because the kind of support that they’re getting isn’t FASD-informed support. So, now we’ve got all major public health bodies are saying that FASD is real, it matters, people with FASD have a right to diagnosis and support and the Government says that, in England, the NHS has a legal duty to take these quality standards into account when they’re deciding services. So, things are going to change.

The NICE Quality Standard calls for more training, so we would hope that CAMHS professionals and others will do more to train up. Some of the studies show that more than 90% of the people with FASD have mental health challenges and that’s a really hard one to know what comes first, but there hasn’t been enough research done yet. You know, that I would bet anything that if people with FASD were diagnosed earlier, had the right kind of support in place that that figure would go way down because people with FASD can live happy, productive lives if they have the right kind of scaffolding around them.

So, I’d say the key message is that you can literally change lives by helping to recognise and support people with FASD. And it’s really encouraging that the Royal College of Psychiatrists now has a working group that’s looking to produce a report on FASD, so hopefully that’s going to be another exciting milestone and further step in the field.

I know of people who have had professionals say to them that, “Oh, FASD is not real.” Now, there’s less ground for them to say that now that finally – because it’s been so silent up there in the – from the Department of Health and the NHS and everything, you know, previously. But this is in the last couple of years, this has all changed. The people are in the systems already, but it’s all – it’s just not working, and if we can get in place the right support, I mean, everybody will be happy and it will cost less money. You know, how much money does it cost for a young person, once they are in jail or they’re, you know, going through some of the horrible life experiences, that hopefully we could avoid?

[00:26:41.830] Jo Carlowe: And, Sandy, sticking with you, what about policymakers, you’ve said that some change is afoot, what is your message to them?

[00:26:47.840] Sandra Butcher: So, my big question is, why is there no funding for FASD? There was a little bit of funding a couple of years ago, it’s all dried up. Now, the Government, they’ve got a new policy coming out on major conditions and one of those major conditions is mental health. National FASD would argue that there’s no way you’re going to be able to meet the nation’s mental health needs if you don’t diagnose and properly support people with FASD.

We’d like to see a parliamentary green paper, ‘cause across all the different public health bodies, there’s been hundreds and hundreds of hours put in to coming up with these new policies. And there’s an FASD health needs assessment that talks about where improvements need to be done, and it just seems like it would be tragic to lose that momentum by not taking the next step. But, as I said, it’s just acknowledging that there is best practice out there.

National FASD had a whole series of roundtables with a wide range of practitioners and experts and people that experience it. There’s a report that we did called the ‘Time is Now’ that highlights best practice and different health bodies are using that as they’re trying to move forward on neurodevelopmental pathways, getting in place FASD prevention, and understanding that there are ways to do this, without a huge expense to local areas that want to take these steps.

[00:28:02.470] Jo Carlowe: Is there anything else coming up in the pipeline that you would like to mention?

[00:28:07.160] Sandra Butcher: The National FASD is trying to raise money right now to put in place similar materials for people as they transition to – into adulthood. Information that’s designed for them in an accessible way and maybe with some apps and some interactive websites that they can use. Because, you know, my son, he’s 19, and I’m sure he doesn’t know how to access benefits and support and what he’s entitled to.

Rachel’s just told us that she’s concerned about what’s she going to do, once her parents are no longer here, and we hope that’s a very, very long time from now, but housing issues, all these sorts of things, we have to start preparing young people to make that transition to adulthood in a healthy way. If you think – you know, as we said, two to 4% of the population, that means – think of all the adults out there who are struggling. These maybe the people who are homeless or have addiction problems or have been in prison, you know, living lives of desperation because they were never diagnosed and never appropriately supported. We want to prevent that. We want to create healthier futures, but the most important thing is that people with FASD have so many strengths.

You know, the people who listen to this podcast have the ability to change lives and I hope they know what a gamechanger that can be. So, we went from desperate, desperate times, with all kinds of things going on in our house, to now our house has been calm and happy and my son, he loves music and he’s fantastic at creating music and, you know, he’s kind and caring and loving. So, if we can focus on the positives and switch the whole discussion, we can create better tomorrows. And Rachel and others like her are showing us how to do it by being courageous and coming forward. And it’s not easy to share the kinds of things she’s shared today, but it’s what gives us all hope and to keep moving forward.

[00:29:55.559] Jo Carlowe: And finally, what are your take home messages for our listeners?

[00:30:00.510] Rachel Jackson: I guess, just be patient with the condition because we are a little bit slow on some things, but – and, you know, we can be very loving towards people. We can show you our, like Sandy said, our strengths if you just let us.

[00:30:19.090] Jo Carlowe: And, Sandy?

[00:30:20.280] Sandra Butcher: Yeah, FASD is real, there’s no denying that anymore. CAMHS practitioners, people in mental health services, you can really have such a powerful role in the lives that people are leading and you can help create brighter futures and I mean that very sincerely.

The FASD UK Alliance is an informal coalition of groups all across the country. If anybody out there is looking to talk with people with FASD or to better understand a lived experience to advise how to move forward on this, you know, either contact National FASD or contact other groups in the FASD UK Alliance. We’re out here, we’re meant to be being consulted on these things, as we say, with the Government putting this new push on mental health as a major condition. Please talk with people with FASD and their families, as you’re trying to figure out ways forward because we’re an important part of the mix.

[00:31:06.230] Jo Carlowe: Rachel and Sandy, thank you so much for your time today. For more details on FASD and FASD Awareness Month, please visit the ACAMH website, www.acamh.org, and Twitter @ACAMH. ACAMH is spelt A-C-A-M-H, and don’t forget to follow us on your preferred streaming platform, let us know if you enjoyed the podcast, with a rating or review, and do share with friends and colleagues.