In Conversation… Fetal Alcohol Spectrum Disorder (FASD)

Dr. Jennifer Shields & Dr. Sarah Brown discuss Fetal Alcohol Spectrum Disorder (FASD) with freelance journalist Jo Carlowe.

FASD is the most common preventable non-genetic cause of neurodevelopmental disorders in the UK. FASD is an umbrella term used to describe the range of effects that can occur in an individual with prenatal alcohol exposure. These effects can have lifelong implications including physical, mental, behavior, and/or learning issues.

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Transcript

Intro Speaker: This podcast is brought to you by the Association for Child and Adolescent mental health, ACAMH for short. You can find more podcasts and other resources on our website www.acamh.org and follow us on social media by searching ACAMH.

Interviewer: 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 principal clinical psychologist Dr. Jennifer Shields and consultant paediatrician Dr. Sarah Brown of the Scottish government fetal alcohol advisory and support team. Jennifer and Sarah will be giving us an overview on fetal alcohol spectrum disorder, FASD, which is the most common preventable non-genetic cause of neurodevelopmental disorders in the UK. Welcome Jennifer and Sarah. Can you start by introducing yourselves?

Dr. Sarah Brown: Hello. My name is Sarah Brown and I work alongside Jen in Ayrshire.

Dr. Jennifer Shields: And hi I’m Jennifer Shields. I’m a clinical psychologist based in this fetal alcoholic advisory support team.

Interviewer: Fantastic, and fetal alcohol spectrum disorder is an umbrella term for several diagnoses related to prenatal exposure to alcohol what precisely does FASD encompass?

Dr. Sarah Brown: So people may be more familiar with the term fetal alcohol syndrome, which was first described the late 1960s and 1970s seventies and that really described a syndrome where the were marked physical features such as small head, poor growth and quite distinct facial features. However, a bit like autism over the years we have realized it’s much more of a broader spectrum and FASD would refer to the whole spectrum of conditions which for the vast majority in fact ninety percent have none of the physical features that you would see in the first described people alcohol syndrome group. So only ten percent would have different facial features, ninety percent of those affected by FASD have no physical features.

Dr. Jennifer Shields: According to other international classification systems, people might have heard of FASD under the diagnostic term of a new developmental disorder fetal alcohol exposed. And so that’s just a different way of saying the same thing but FASD is the more recognized term.

Interviewer: Right? Thank you. There’s always debate about whether or not women should drink during pregnancy. And I know in two thousand and sixteen the UK chief medical officer changed the guidance to say no alcohol should be consumed in pregnancy. So when you’re talking about prenatal exposure to alcohol leading to FASD. Just how much drinking is harmful?

Dr. Jennifer Shields: To me it’s a bit like drinking and driving, it’s people realize that they shouldn’t drink and drive because it increases your risk, and people accept that quite readily, however, when it comes to pregnancy and drinking those same risks the more you the more you more alcohol you drink during a pregnancy the higher the alcohol exposure to the pregnancy, the more likely you are of having FASD, but just because you drink during pregnancy doesn’t mean that you will necessarily have an affected child. And that’s what makes the messaging really really difficult.

We are certainly not advocating that people drink any alcohol in pregnancy and the arguments around what is the safe limit, is a bit like we’re not having a similar conversation about what is the least number of cigarettes that you can smoke in pregnancy. It’s because alcohol is so wrapped into our culture that people feel that we should be able to find the safe floor limit. But the evidence would tell us that we don’t know what’s safe and that’s what makes the advice to be on the safest possible side of the advice being given as it’s no alcohol, no risk.

Interviewer: Can you start by giving some details of the types of congenital anomalies that one sees caused by exposure to alcohol in the womb?

Dr. Jennifer Shields:  So I think you can probably put these down into structural anomalies and maybe kind of more functional anomalies. In terms of the structure anomalies people may be familiar with the facial features which I mentioned briefly earlier, and that is the thinner blood that we note from new slightly smaller eye openings. We also know that alcohol can increase your risk of having a congenital heart abnormality and also differences within the way that your brain is developing. So you might have a very thin or absent corpus callosum. These are just the structural abnormalities that we can see and there’s more than I’ve mentioned here. But what is common across all those affected previously by alcohol is the neurodevelopmental consequences of fetal alcoholic exposure.

Dr. Sarah Brown: Yeah, and in terms of the functional differences it might not be that these differences in the brain wiring would show up in a brain scan for example, but what we see are marked differences in how children are able to process information, protect extensity information, to remember to be able to problem-solve and so there’s lots of thinking and cognitive problems that can be picked up through certain psychological assessments.

Interviewer: Right and how might it manifest in terms of behavioral issues?

Dr. Jennifer Shields: Yeah, so I think what’s interesting about if you esteem and you think about the types of children who might present at a Child and Adolescent Mental Health Service, for example, a lot of these children are presenting with distress, and that distress might appear like significant behavioral difficulties through refusal, not wanting to remain in the classroom. They may have meltdowns at home, may lash out and and you know be verbally abusive and and seem to have meltdowns a lot of the time and sometimes this is a real relationship to how the brain is functioning and and how it might not be conducive to learning in a mainstream classroom environment where it’s quite noisy. There’s lots going on lots, to be filtered out, these children have very similar sensitive problems to that kids who are autistic and they have lots of learning and behavioral differences to other neurotypical children. And it just depends on them meeting a clinician who has the range of lenses in order to understand that this could be a potential explanation.

Interviewer: So what other signs are there to alert health professionals to the presence of FASD?

Dr. Sarah Brown: There are the facial features which may be picked up when a child is younger or in primary school. The main thing is taking a good alcohol history, which is something that I think people need to put more training in.

Dr. Jennifer Shields: Yeah. I mean, I guess just echoing what Sarah said about ninety percent of these children won’t have facial features. The presence of an alcohol history, so that could come from a conversation that the ACAMH clinician is meeting with a family for the first time you’ll might be able to ask a series of questions about pre-pregnancy lifestyle in a conversational way, not just asking did you drink in pregnancy? Because that normally illicits a “yes or no” response. Mainly a “no” response, actually asking about when somebody realized they were pregnant what the lifestyle was like up until then, what their diet, stress, smoking, alcohol or other drug taking status was, but in a very sort of conversational way and that is the sign that would alert you to the possibility of FASD. But as we said not all alcohol in most pregnancies lead to FASD.

Interviewer: And how well-trained are health professionals in asking those types of questions in what sounds like it has to be a non-judgmental way?

Dr. Sarah Brown: I think it’s getting better. But I think you would agree Jen, there’s a large piece of work needing done probably across many specialties within health, but also within multi-agency teams and really and education to raise the awareness and be able to speak about alcohol exposed pregnancies in our non-judgmental, non-stigmatizing manner, and I think the first step that would be embedded in our curriculums across professional groups regarding FASD in terms of awareness raising, but in particular taking that sense of alcohol history regardless of the assessment process that you think you might be needing to do. So if a child is brought in for an autism assessment I still think there’s merit in taking a good alcohol history as part of your your developmental process.

Interviewer: In my intro I described FASD as the most common preventable non-genetic cause of neurodevelopmental disorders in the UK. Just how big is this problem? What is the prevalence?

Dr. Sarah Brown: Well, there is, I have to be upfront and say there’s a lack of research in this area, I guess we’ve got the problem where there’s no data. There’s no problem. There’s no action. And therefore there’s not been a lot of impetus to get data unless until fairly recently, but there has now been in the last year Sharon Maguire and colleagues in Bristol did a screenings study. So this isn’t about diagnostic outcomes, but from screening a large cohort of individuals as part of a previous study their estimates lie between six percent and seventeen percent. That sounds like a very high number, but when we look at the biological data that we have from a Glasgow based study which looked at meconium and biomarkers of alcohol, they found that forty percent of the children born had alcohol biomarkers and actually fifteen percent had those biomarkers to a very high level which indicated routine drinking in pregnancy to levels that would be teratogenic to a fetus. So it’s a big issue that we need to confront.

Interviewer: I’m wondering whether people with FASD are unaware of what is happening to them and why they have the issues they have?

Dr. Sarah Brown: A really good question. I think a lot of the time the individuals that we’ve spoken with, in particular the adult community tell us that they’re very aware that things are different for them, that they don’t seem to fit this world like they see their peers coping with school and relationships and independent living and particularly for teenagers these individuals are very self-aware that things aren’t right. And the consequence is that they have misunderstood presentations to see cams or mental health services at large and and receive interventions for things in like merging anxiety at really underpinning reason for that, difference is something new development and it’s not been understood.

Interviewer: How is FASD diagnosed, when it all goes right. What happens?

Dr. Sarah Brown: So I think it would depend on the age of the individual. If a wee one is born and we know that there has been a high level of alcohol exposure during pregnancy. It may have a small head circumference, it may have facial features and that’s something that can be detected you know at birth or shortly thereafter, and appropriate diagnoses depending on the timing and the family situation. It may be potentially diagnosed by that point. I was say for the vast majority it’s later on during either childhood or into adulthood and that would depend on their physical presentation. But also the new developmental presentation. We certainly see children presenting at different ages and it seems to relate to when the kind of environment becomes slightly less supportive. So it might be going from preschool years and Nursery into primary one or reception think in England. Equally when it gets about middle school, middle primary school and children are being expected to do a little bit more for themselves, that might be where there’s a bigger gap growing between them and their peer groups.

And again to secondary school, that’s a big time for referral simply because the environment is not as supportive. You don’t have a single classroom. You’ve got to get yourself around schools. So once the concern has been flagged up and if we have a positive alcohol history, then that is actually referred in boring your developmental assessment. And as part of that new development assessment, we would look to see what we think is the most likely cause that you would with any presenting industrial illness as an edit or is the psychologist?

And I think that if you felt that alcohol was a significant contributing factor, then we would involve our wider multiple disciplinary team. When the child is I mean, it’s very difficult to do this I would say under the age of five even maybe seven depending on the child’s ability. So it’s often kind of that middle primary school age where they present, and at that point if they were having difficulties learning to ride a bike or are quite clumsy. You can catch a ball, tie their shoelaces, if it was functional difficulties related to their fine motor, gross motor skills. We would ask our colleagues in occupational therapy to see the child and assess them.

Dr. Jennifer Shields: For me having an assessment of their language standardized assessment can be very very useful. We know that the children, young people are often able to express themselves very, well. It may not be entirely age appropriate as to the peer group, but it is good enough that you wouldn’t necessarily pick up on there being a big difference in the content or structure of their language, but that can often mask a difficulty with understanding language and they can be very lost within busy settings and busy classrooms and more complex instructions. So for me referring on to speech and language therapy to get a good understanding of both their core language skills, and the pragmatics of their language is really really important.

My role as a pediatrician is to look for I suppose the underlying cause or any associated health conditions. So for me, it’s great examining whether they have any birthmarks, any structural abnormalities, if their head size is appropriate for their age. If they have any facial features. And but also thinking about any inherited vulnerability, so any genetic contributions that may make a child more prone to having some learning difficulties or difficulties with education or mental health issues. Another line of my work is in children who are care experienced. These are children who’ve been in the looked after in accommodated service, and often the histories that you have for these children are very patchy and the understanding they have of their family makeup or their family history can be lacking. I think it’s particularly important for this group to ensure that there’s not been a small inherited micro-deletion or duplication, which is the one small change in your genetic material, because that may offer an explanation as to why their parents struggle to meet their needs. And that might be in addition to a prenatal alcohol exposure because of moms difficulties, and knew what she was facing in life. So I think it’s all about piecing together information as a pediatrician about that medical history and health history and any head injuries or severe illnesses really that might also have contributed to a new developmental picture. I think that one of the biggest kind of pieces of work is by my colleagues in Psychology and although Jane is the principal local psychologist for this we do work within a team where we have the skills within a  cam psychology department who can all work with these these young people.

Interviewer: Right, you’ve described best practice, but how good are clinicians and other health professionals at making a correct diagnosis? Does that good practice happen enough?

Dr. Jennifer Shields: Well at the minute, I think it’s fair to see that there are only two main centers or health boards that are providing that systematic approach to FASD assessment, and there are pockets of good practice happening in other health boards. But it’s just new and emerging within their new developmental pathways. And so to my knowledge in Surrey and borders there’s the national FASD center. Run by Dr. Raja Mukherjee and partners in Psychology. And he’s also a consultant psychiatrist for a number of new developmental conditions, so, he’s a very suddenly spread resource I must say. And there’s ourselves in NHS Ayrshire and Arran but within Scotland we’ve been trying to encourage other health boards, and they are doing as I said pockets of assessment here and there for fetal alcohol spectrum disorders. Generally in a multi-disciplinary neuro developmental pathway approach. It’s not specialist centres like you have in Surrey in England. So I feel like we have got a long way to go, but the fact that Scotland have now produced signed guidelines so it’s sort of the move to the nice guidelines in England and we understand now in England there will be a nice quality standard for FASD which I hope will promote in clinicians and health professionals to get training to make the correct diagnosis because I think the risk of misdiagnosis is high and I think the further risks as a society of us to know what to identifying this will have huge impact on prevention or the lack of prevention.

Interviewer: So if the condition is misdiagnosed, mistaken, perhaps for autism spectrum disorder or ADHD. What harm is caused by that misdiagnosis?

Dr. Jennifer Shields: Well I think for some of those children there will be benefits of being understood as having a typical neurodevelopment and certainly, you know, children can benefit from stimulant medication, but perhaps for children with FASD there are going to be brain areas that are affected beyond social communication, social interaction that aren’t identified and therefore the interventions that follow will not fit the profile of that child. And similarly, if children are misdiagnosed as having ADHD, and actually the reason for their distractibility, fidgetyness and impulsivity is coming from more a brain structured place rather than a neuro chemical place then potentially these children will have medication that has limited efficacy and certainly even in the kids that have FASD  and ADHD there are different medications. That would be your first line medication that is different to general pathway for ADHD management.

But I mean, I’m a psychologist speaking about this but I’ve learned a lot from psychologists and psychiatrists who work in the FASD field and I hope I’m doing a good enough job to represent your thinking on that. But I think it’s about accurate diagnosis coming from a good understanding of the profound strengths of different difficulties. If you think it’s autism or ADHD, then you’re going to be missing a large part of the picture.

Interviewer: So what happens when a correct diagnosis is made how are children with FASD and their families helped and perhaps you can talk about some of the existing interventions?

Dr. Jennifer Shields: Yes. So I think the correct diagnosis also comes as part of a bigger picture of the correct understanding of the brain profile. So for example, if a child has got language comprehension difficulties that are now eliminated by speech and language therapy that their motor difficulties are understood, that we can see that their executive function is very difficult for them to control and pulsivity, for example, there’s a whole range of environmental and and multi-disciplinary interventions that would affect that profile. It’s really about making sure the child gets the right understanding and sometimes very simple environmental adaptations in the school environment can have a huge benefit to the child. So bringing down the sensory stimulus changing the position in class, the teacher knowing about the comprehension problems, knowing about the motor difficulties, seeing that impulsivity in a different light as our brain based problem, not just behavior, can change the responses of others, the understanding of the family and can provide a meaningful lens by which the child’s behaviors, distress and emotions can be understood. So there’s lots of things that we can do for these children, but it does follow the correct profile and diagnosis being constructed.

Interviewer: What does the research show us with regard the efficacy and effectiveness of the existing support and interventions for children with FASD?

Dr. Jennifer Shields: The broad strokes of that is that the earlier that you identify and diagnose with appropriate the better the outcomes are for children, because people understand them, they are able to adapt the environment, adapt communication and offer support where appropriate. So, basically the evidence states if you’re able to provide that understanding in the diagnosis before the age of eight, then you have got the greater ability to augment the trajectory of that child and steer them away from the negative outcomes, which can be you know, disengagement from school, addiction problems, homelessness, unemployment, and I guess generally being misunderstood for much of their adult lives. These children function at a different level to their chronological age.

So, as Sarah said adjusting expectations can have a huge meaning to families and to the individuals themselves and our adult community, tell us that that being understood is the most important bit. And actually that is what helps them to find a new self-identity, self-concept and does reduce the likelihood of mental health problems because in those who aren’t identified 95% will have mental health difficulties. So it’s as much as trying to promote the positive and harness the strengths and also trying to diminish all the barriers that lie in the way of the child and to avoid those negative outcomes.

Interviewer: If it is known that there has been prenatal alcohol exposure. Is there anything that can be done preventatively to reduce the risk of FASD?

Dr. Sarah Brown: I think the most important thing is to recognize if you’re pregnant. Even if you have been drinking stopping drinking any further alcohol is extremely beneficial.

Dr. Jennifer Shields: The other thing is that the children that the research that we know about these children indicates that if you’re able to offer stability particularly from an attachment perspective having care givers who are attuned, that they are these children protected from any trauma or further victimization because a lot of these children do have those complexities, but they don not cause the degree of neuro developmental difference as you know attachment trauma, and I went to be clear on that. But if there is to be harm reduction it is stopping alcohol at the earliest point ensuring the pregnancies are well supported, that the diet is good and in mom-to-be and that yeah, those those early years that is well supported as possible.

Interviewer: Right, and talking about research are either of you working on any specific trials or projects with regards FASD that you’d like to share?

Dr. Jennifer Shields: Yes so our teams looking to be much more active in the research fields, we’re looking to build up evidence on the neurodevelopmental profiles of these children using all the results of the multi-disciplinary team assessments. But I think most importantly we are looking to hear the voices of those who have the lived experience and what we want to find out is perspectives on FASD diagnosis from the perspective of birth moms, from adoptive parents, from the individuals themselves who have FASD and to see what they think about how our future services should be shaped. So that’s our priority for our team We are also going to be writing up papers on our service evaluation that we conducted in NHS Ayrshire and Arran, and we’ve also got interesting genetic findings that Sarah is looking to explore. So but with our partners in FASD, we’ve got some parenting intervention work that we’re looking at and we’re also excited to hear our colleagues are looking at active case ascertainment in England, which I think will be really helpful in terms of being able to get people that definitive answer of how prevalent FASD is in the UK. So there’s lots happening, but we need lots more people to be interested in FASD and to help take that forward.

Interviewer: With regards the near future, what else is needed either in terms of research or policy that you would like to see come to fruition?

Dr. Sarah Brown: I think that what I would like to see is this been given a much higher recognition and platform within governments and also within the research communities of universities. The funding that is attributable to FASD is very very minimal and it is an area where we need so much more research and for it to be seen as being the priority that it needs to be in terms of improving the kind of social economic outlook for not just individuals, but also society and the damage that alcohol can do prenatally. And I think to me that would be be something that we all need to work on to get it on to the agendas of policy makers, funders and people who develop curriculums for all the relevant and professionals involved in care of young people and adults.

Interviewer: That’s great, we’ve covered an awful lot. Is there anything else you’d like to add perhaps as a takeaway message for those listening to this podcast?

Dr. Sarah Brown: I mean I think for me I always say to people when I’m giving a lecture that if you don’t remember anything else from this apart from no alcohol, no risk. If you protect any future pregnancies that you have from prenatal alcohol exposure. If you can spread that message with your family members, nieces, nephews, boyfriends, husbands. I mean to me it’s about everyone playing their part in the prevention message. And it’s as simple as if you’re drinking don’t drive. If your drinking it should be that you avoid pregnancy and ensuring that contraceptive options are explored both for the young people we work with and for anybody really in the community and I think that no alcohol, no risk message needs to be really used in lots of the contacts we have with people both socially and professionally.

Dr. Jennifer Shields: Yeah and for me, I think for me it’s FASD is everybody’s business whether you work or are a researcher in criminal justice, in addiction and mental health, in child and young people’s health. Whether you work in cardiac or whether you work in a clinic that’s for for something else. This has got to be on your radar. It’s affecting so many people in so many different ways and many of which we don’t understand that we can’t allow this to just be something that child mental health or paediatric departments need to be involved in. This has got to be everybody’s business and prevention is key. And for those that are affected. They just want to be seen. They describe themselves as hidden in plain sight and they require identification, diagnosis and support like any other child and we just need to make sure we upskill as many people as we can and raise awareness of FASD and that’s why we thought this podcast would be a great thing to do and if people are able to share that then we would be very grateful.

Interviewer: Right, fantastic it’s been really fascinating. Thank you Dr.Jennifer Shields and Dr.Sarah Brown for your enlightening overview of fetal alcohol spectrum disorder. For more details visit the ACAMH website www.acamh.org and Twitter at ACAMH. ACAMH is spelt ACAMH.

Outro: This podcast was brought to you by the Association for Child and Adolescent mental health, ACAMH for short.

ENDS

Principal Clinical Psychologist for the Scottish Government Fetal Alcohol Advisory and Support Team (FAAST) based in NHS Ayrshire and Arran. Principal Educator for Autism (NHS Education Scotland)

Following two years working for the West Dunbartonshire Acquired Brain Injury Service, Dr. Shields completed her Doctorate in Clinical Psychology at the University of Glasgow. Alongside her clinical post within the Child & Adolescent Mental Health Service in North Ayrshire, she also completed a Post Graduate Diploma in Paediatric Clinical Neuropsychology at University College London. Dr. Shields has a longstanding interest in neurodevelopmental conditions and acquired brain injury. She was a member of the working group for the SIGN Guideline for Autism (145) and is currently a member of the working group for the SIGN Guideline for FASD.

Consultant Paediatrician, Rainbow House Child Development Centre, NHS Ayrshire & Arran

Dr Brown has longstanding interests in advocating for the needs of Looked After and Accommodated Children and is the Lead Paediatrician for LAAC Health within Ayrshire. Dr Brown is the Lead Clinician for the Scottish Government Fetal Alcohol Advisory and Support Team and is committed to supporting the nationwide development of FASD services and improving clinician confidence in the diagnosis of FASD. She regularly teaches and presents at conferences on Fetal Alcohol Spectrum Disorders and is a member of the FASD SIGN Guideline Group.