Professor Elizabeth Elliott:
The purpose of today's workshop is to try and increase health professionals' capacity to recognise the possibility of fetal alcohol spectrum disorders.
And to make that diagnosis, how to ask about alcohol use during pregnancy.
How to assess a child for the physical characteristics that might result from alcohol exposure in utero, and then how to assess the child's functional capacity.
Fetal alcohol spectrum disorder is increasingly recognised as a major problem in Australia, and children with fetal alcohol spectrum disorder can grow up to have severe difficulties dealing with schooling, with work and with life.
Today, what we've been doing is addressing the issue of diagnosis of fetal alcohol spectrum disorder.
We now have an Australian guide for diagnosis and we've been running through this today with a whole range of health professionals, allied health professionals, paediatricians, nurses, people from the justice system, people in education, to really try and build capacity in Australia for understanding what is this diagnosis, how can we make it? How can we help children to have a better future?
Associate Professor Doug Shelton:
Most of you today have voted with your feet.
You're here because you're probably already attuned to the idea that FASD exists. That it's common, that it's chronic, but it's also preventable and responsive to intervention.
We know that there are a lot of children in Australia today that have FASD that are unrecognised. Or if they are recognised, they're under understood.
We know that the way to understand them and to help them to lead better lives is by providing a comprehensive medical and psychological and behavioural assessment to understand how their brain works. And to then use that to develop a plan to help them lead the best life possible.
Professor Elizabeth Elliott:
Everything we do as clinicians and researchers should be guided by parents and children and adults living with fetal alcohol spectrum disorder. We really respect their input. And they provide to us lots of insights about how we could have spoken more compassionately with them, how we could have considered their diagnosis in the context of whatever else that has gone on in their lives. How we should have focused on their strengths as well as their needs, how we might better provide support and treatment.
Claire Gyde:
Diagnosis of FASD is a difficult one to accept from a family perspective.
But once you wrap your head around the fact that it's a lifelong disability and that it's not only children who've got FASD, it's adults who've got FASD as well.
I think we can't underestimate the importance of receiving a diagnosis, because once we learn better we can do better. And I think that that's probably the message that I would give clinicians. And also to remember that, parents and caregivers, by the time they're knocking on your door are pretty battle weary, so be patient and kind.
Dr Andi Crawford:
An FASD diagnosis doesn't just give a label, it gives an assessment that provides a way to manage the child differently, both at home and at school.
If we don't understand strengths, as well as areas of difficulty, we can't provide the right strategy so people and children can reach their potential.
Dr Amanda Wilkins:
And to add to that, while we've been thinking about families and individuals that are affected by this disability, it's also important that we remember the public health perspective. So you think about prevention in terms of primary prevention that getting the health messages out to mothers is important, but also there is a prevention of secondary disabilities that if people don't have the opportunities to receive therapy and support, they may develop mental health disabilities or other secondary disabilities.
Dr Marcel Zimmet:
Talking about alcohol, and the effects of alcohol is everyone's responsibility. And that's why we're all here today.
Alcohol is a common facet of many parts of our society. And we have known for several decades now the severe impact that can have on children, both in the womb and for the rest of their lives, and also has ripple effects for families across time, across space.
It's critical that we continue talking about alcohol, have those disruptive conversations amongst our friends, our professional communities, and also at appropriate time and place of course, with parents, families, children, individuals, adolescents, coming to us for assistance and understanding.
Brenton Maxwell:
Given that we know such a large number of people that are being diagnosed without any facial features, and also given that we aren't yet really understanding what the dose relationship is with alcohol exposure and the condition, so at this point in the science, we don't have like a cognitive or behavioural or physical phenotype of FASD. So given all of these kind of complexities and difficulties I guess my question is, it seems like we're relying very heavily on the neurodevelopmental domains to identify FASD.
And so my question is, given that those domains cover pretty much all of the different domains of functioning in children and therefore have very high sensitivity but very low specificity, as clinicians, in the absence of facial features and physical evidence, how are we differentiating between different neurodevelopmental disorders such as ADHD, which is very common in clinical populations, and FASD based on those kinds of guidelines?
Professor Elizabeth Elliott:
You mentioned ADHD, we've talked about autism spectrum disorder, we've talked about oppositional conduct disorder, et cetera. I see all of those as symptoms of the brain injury that's due to alcohol. The physical features as you mentioned occur in only a small proportion, but if we are able to identify those physical features then they do help us understand that this is more likely to be a brain disorder secondary to alcohol exposure. So I think we do need to acknowledge the complexity.
Sometimes we can't make the diagnosis, and as was mentioned by Andi in her talk, the really important thing is a comprehensive assessment to identify how we can help that child and how he can support their strengths.
Whether or not we're able to make the diagnosis at the end of the day.
Associate Professor Doug Shelton:
Sometimes I don't think that the diagnosis is the most important thing, the most important thing is understanding the level of functional impairment across those domains.
And then looping that back to the parent's understanding and the school's understanding, and the wider ecological environment around the child and using that understanding to diminish that gap between expectation and capability, because we know that if you can diminish that, you're likely to decrease the occurrence of secondary, tertiary, quaternary disabilities down the track. So by decreasing that gap, it may make the difference between whether someone ends up in jail or whether someone has positive nurturing relationships with other people, has a productive job and positive self-concept.
So you might think I've avoided your question and maybe I have, because I don't know the answer to the specificity question but I'll be happy to give that to any of the other panel members to answer.
Dr Amanda Wilkins:
Just a quick comment, around the research studies where you're comparing ADHD, non-alcohol-exposed children to those that have FASD. So that's the way of teasing out, are there differences and similarities between those two groups? One of the things which comes up is around attention, that individuals with ADHD who are non-alcohol-exposed have difficulty in investing attention and then maintaining attention. Whereas in the FASD group, they have difficulties with shifting attention and encoding information. Those are group differences but when it comes down to clinical practice and seeing an individual child, it's very difficult and much more complex.
Dr Andi Crawford:
But going back to what Doug said around management, it's around what is the neuropsych, the speech-language, the profile that the neuro-developmental domains tell us.
And what does that mean? How can that explain the behaviour that the child is showing? And therefore how does that direct us to management strategies so that child can best operate both at home with their parents and at school.
Dr Marcel Zimmet:
You can't take alcohol out of the equation. So there may be lots of other factors from trauma to genetic co-morbidity that may be impairing on part of the child's neurodevelopmental profile or why they have neurodevelopmental issues.
The fact remains that once there's alcohol in the picture there is no way we have, in clinical practice or even research practice, to say that alcohol has not played a part in this child's developmental difficulties or developmental impairment.
As to the quantity of that, no one also can tell if we have a child with six years of trauma, high risk for alcohol exposure, some physical features or no physical features, none of us can actually say the amount the alcohol - whether it's 90%, 10% - or what genetics play.
Gavin Cleland:
My question is, when you make a diagnosis of FASD, do you consider that you're implying that alcohol is one of the etiological factors among a variety of etiological factors, or are you saying that alcohol is the primary etiological factor for that neurodevelopmental impairment? And do you think that view is shared by the people who use that report subsequently?
Associate Professor Doug Shelton:
What we tend to do in all our formulation is to consider all the different etiological factors, so trauma is the common one. So trauma and alcohol and genetics, and any other potential traumatogenic exposures the child may have had.
Professor Elizabeth Elliott:
Just a little bit of anecdotal experience of my own from the study that we did in the Fitzroy Valley. 100% of the children that we saw had significant early life trauma, much more than perhaps most of us would have experienced, the death of a mother, witnessing a murder, severe car accidents, snake bites causing death of a sibling - really severe traumas. And yet the children who were exposed to alcohol did significantly worse than the children who were not exposed to alcohol. And the children with a diagnosis of a fetal alcohol syndrome disorder did significantly worse than those with alcohol exposure or without alcohol exposure.
So I think you're absolutely right. Trauma needs to be considered, as Doug said, so do other potential illnesses, other insults, either prenatally or postnatally but we can't just focus on early life trauma when there is good evidence that there has been high level alcohol exposure. And when we have known for centuries, really, that alcohol damages the brain.
Claire Gyde:
I actually think it's society's denial that alcohol is the problem. And that's from professionals, like you say, so as a society, we need to get our heads around the fact that alcohol is a poison that's doing damage.
Professor Elizabeth Elliott:
We now have a guide that will assist clinicians in thinking about this diagnosis, and will give them the skills to address the possibility of the diagnosis. We've given them the skills to ask about alcohol to assist for neurodevelopmental impairment, to exclude other diagnoses, to look for physical features.
But I think it's been a lot more than that.
It's really given us an insight into how we need to be compassionate about understanding why women drink in pregnancy, how we need to ask about alcohol with sensitivity, how we need to provide not just a diagnosis but the wraparound care that these families need for life.
And I think at this point I should stress that fetal alcohol spectrum disorder is a brain injury, and that injury doesn't go away. This is a problem for life, but the earlier we can recognise and diagnose fetal alcohol spectrum disorder, and put in place the appropriate treatments and supports then the better the quality of life and wellbeing will be for that person.