Autism treatment

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Hi, I'm Jo Cheah and this is the Australian Prescriber Podcast. Joining me today is Dr Melanie Turner, who is a child and adolescent psychiatrist in South Australia. In this episode we'll be discussing the role of drugs in the treatment of autism. Welcome, Mel, thank you for being here.

No worries.

So, what is autism spectrum disorder?

Well, if we think about when autism really first came about it was a long time ago and we had a researcher and a clinician. His last name is Asperger and he really looked at and developed a way of really diagnosing and understanding a group of people that had a similar set of symptoms. That was about emotional and social disconnection, they were more aloof than others, they seemed to have more of a self-contained way of being and playing, they sometimes had difficulty with emotional regulation. And after that pattern really developed over a period of time we had the name Asperger's syndrome, and that really sat separately from autism.

Autism was originally seen as a much more profound neurodevelopmental disorder which I think initially really we thought overlapped mostly with severe intellectual impairment, epilepsy, genetic disorders, and over time we've come to realise that autism is actually a spectrum. So we've really brought Asperger's and autism and put it along a descriptive line of a spectrum. The most common features are deficits in that social communication, social interaction, and often difficulties building and keeping relationships.

Not because they don't want them but because someone who has autism struggles to understand the social nuances and the emotional kind of connections that some people have, but also combined with that they really need to have different repetitive patterns of behaviour, they might have really intense interests, lots of difficulty with change. And all of those features really need to be in presence since they were very young, so we consider really it's a neurodevelopmental disorder. So that's kind of the short Mel- potted version of autism spectrum disorder.

Are there any other major or common symptoms of autism?

Yeah, I think particularly when we do an initial assessment in children, I suppose it's worth pointing out there's a couple of particular assessments that are most common. So we use one called the ADOS, which is the Autism Diagnostic Observation Scale, and it is what I tell the kids is the doing part of an assessment. And what that shows there is some of the symptoms children have, which is picking up on other people's social cues. So we would play a game and there will be parts of where I would ask to join in and would look to see whether the child knew that I was interested in wanting to be social, was able to share that time with me, was able to play the game along with my rules and their rules.

So that's often seen in the playground and in the home with children with ASD. We also do other things like being able to really cognitively interpret the complex social situation. So be able to look at a room full of people and being able to work out who to approach and who not to, and who might be friendly and who may already be busy. The number of kids with ASD in particular will find group scenarios very tricky. So being in class can be hard, going on camp can be hard, and they'll say there's just too many people and too much going on for them to interpret it.

Some of the more restrictive repetitive patterns, if you watch enough TV you'll think that lining things up means someone has autism, but in actual fact a lot of it really is about rather than play children seem to get joy from sorting or ordering or collecting things. It's not so much having a role play in playing house or playing schools, but it might be that the collection of pencils in the right order seems to give them a stronger sense of inner happiness. Movement can be unusual, some kids will flap or twirl or click or spin and that is something called stimming, which is a stimulatory reactivity, which some people do who want to express how they're feeling, it might be a self-regulation.

So those sorts of things we see in our ADOS assessment in the child autism rating scale, which I tell families is my talking scale, is where I really sit with the family and we look at things like how does this child manage stress, overwhelm, make friendships? What's their communication skills like, the eye contact like? Because often that communication and contact is quite tricky for them and they're more likely to be more introverted people. And then behavioural challenges can be quite significant with some children because self-regulation can be so hard for them that their tendency to be more explosive and having difficulty with uncertainty and difficulty with frustration means that they can become highly anxious and distressed. And so the features of our assessment and the symptoms can actually be around agitation, aggression, and impulsivity.

Thanks for that answer. Obviously we've touched on it already. You're a child and adolescent psychiatrist, broadly, who does this affect? Is it just children or are you more likely to see it in adolescents and what about in adults?

Yep. So we used to think it was something that if you didn't see it in childhood people didn't have it. And I think what we did is that we missed the boat on people that were on this spectrum that weren't clearly severely symptom-affected from their autism and those who didn't fit that typical Asperger description. That there were people that actually had lots of social and emotional challenges but didn't have that explosive challenging behaviour. There were people that were much more highly anxious, obsessive, and repetitive, which are parts of the autism spectrum, but actually socially were able to manage a small group of people.

So often in my generation, I'm in my 40s, people that were diagnosed when I was a kid generally now we would think had very severe symptoms of ASD. So they were many children with high-level special needs who might've had an intellectual impairment. Now, as we understand that there's a spectrum, lots of people who are my age and a bit younger who feel that they or their child who might be 15 or 20 may have ASD are now going back to seek assessments. We used to think it was very rare, so years ago it was 0.1% of the population then it was 1 and now we think it might be 4 or 5%.

And the stats are really hard to follow because it's really an ebb and flowing movement of diagnosis but we try very hard to diagnose early because with lots of neurodevelopmental disorders, if you're able to help a child go on a really good developmental trajectory, make some friends, feel comfortable in themselves, be able to do their academic learning, have a positive family relationship, their future trajectory is much better. So there are more people as adults being assessed now and it's often when they look back they're able to identify all these stumbling blocks for them which were very large and often a distressing experience.

I mean, that's really interesting that you've said that initially it was 0.1%, now it may be up to 4 to 5%.

Yeah, it’s a huge change.

But that may change depending on I guess the diagnostic criteria. And you have mentioned that in your article that there have been some changes to the diagnostic methods and criteria, so what were those changes that you've been talking about?

Yeah, sorry, I won't bore you with all of the psychiatry history of the DSM, which is the Diagnostic and Statistical Manual of Mental Disorders. But in a nutshell years ago we had just lots of general descriptors for mental illness and we didn't really have a classification system. As time's gone on that system has become more refined and research has allowed us to really identify the commonalities in mental illness. So as we've moved from DSM-3 and 4, we're now onto 5, what occurred was in 5 was the recognition of the autism spectrum rather than a separate diagnosis of Asperger's and ASD. And so that blending of the two that was a big cultural shift for people that work with autism because we had been using separate names and separate descriptors and there were separate research to now this idea of a spectrum.

Collectively, there’s also been I think a greater understanding of then our assessment had to be a lot more refined. So there are different adult autism questionnaires, there's a Ritvo questionnaire, there's a child autism rating scales for high functioning and for standard definition, there's all the different ADOS modules that you can use for different ages. But embedded within that has to be a very good developmental history and a really good understanding of the family structure and relationships, because we always need to wear our assessment hat and make sure that we're not missing a child with trauma or a child with an intellectual impairment.

We'll move on now to discuss comorbidities. I mean, reading your article it was very descriptive and talked about many different types of comorbidities that people with autism may have or may experience. So why are people with autism more likely to have multiple comorbidities?

It's a good question and I'm asked that by lots and lots of parents. And I think that if we look at some of the genetic research and the idea about a better understanding of the genetic profile that people have with ASD, so it's really only the last few years that we've been able to send off a different genetic screening for people with autism that it appears that some of those genetic changes also increase the risk of you having ADHD, anxiety, as well as some of the other OCD and mood disorder traits. So I think if we look at it in a neurodevelopmental way, as in there is a fundamental change with how our neurological brain development has occurred, that part of that has meant we're at a higher risk of having the comorbidities genetically.

But the other tricky thing for a lot of people with autism is that life is harder. They have to navigate a lot of challenging things each day. So if you're not a natural talker and you have to talk in front of class every week at your school then you'll likely develop a lot of anxiety about being in front of the class. And if you don't understand how to put that talk together to communicate with others because as part of your ASD your social communication is poor, then your experience of school is negative and your chance of developing anxiety is much higher.

So it's also contributed to really by those community interactions for them. And we know that one of the most common ones is sleep disorders so probably I think in my practice about 80% of the people I see with autism have significantly disordered sleep. And I don't have a crystal ball but I think in the future somewhere they will find that it's almost becoming part of the criteria for diagnosis. And ADHD in children, particularly in attentive subtype, is reasonably common. And so I think we're just really understanding why, but certainly there's a significant overlap with the number of primary mental health disorders.

And I think you've already mentioned a few of the comorbid conditions but are there any others that are common?

I suppose that, I mean, in psychiatry when we see these kids, the most common is sleep disorder and ADHD, it's usually sleep initiation is the most challenging one. Anxiety is probably my number three and we see that a lot. And for some of their kids that in their mid to late teens there is a slight increase in chance of psychosis. So there can be this mixed picture of someone who has autism spectrum disorder as well as some mild psychotic symptoms which can be quite tricky as a clinician to work out sort of what to do with.

And I suppose the big one is that it's important to know people with autism can have obsessionality and obsessional thinking but not actually OCD, and that's a really common question that I'm asked a lot and that's an important one to be able to work out because obsessionality, if that's part of someone's ASD and isn't distressing for them and they're so very obsessed with trains and trains is their passion, that's not OCD. If their passion is trains but they're actually obsessed with needing to lock the front door and that then drives a compulsion and is distressing then we treat that. So that's probably one of the ones I'm asked about the most with comorbidity.

Moving into treatment now, can you discuss some non-pharmacological treatments for autism?

Absolutely. When we look at autism spectrum disorder and we look at all the different challenges people have, there's the social and emotional part of the picture which we need to address. So often for younger kids where you look at social skills and social skills groups run by a facilitator who's able to teach in a very explicit way the communication and to and fro and how to share time and share space with other people, that can be really helpful for younger kids.

Psychology often assists children with emotional vocabulary and adults. What words do I use? What am I feeling and how do I express it? So really developing a language around feeling an emotion and connection. A number of children also have significant sensory needs. So the other thing that occurs in autism spectrum disorder no matter what age you have is it can be very challenging to be able to meet sensory needs around food and clothing. And so there are different programs and occupational therapy input to help children and adults be able to widen their dietary range and be able to tolerate different clothing feeling and weight of clothes. So some people with autism become highly stressed by the contact with different fabrics and it can be really challenging to dress for a cold day.

And then when we look at speech therapy, for some children as part of their autism spectrum disorder, their concept of spoken language can be quite difficult. So, some of them can have an expressive language disorder or receptive, and so speech therapy can be quite key in breaking down for kids and helping teach kids the how to do the talking and then the social skills group lets them do that practice of how to do the social talking.

We often really look again at those developmental chunks in kids. Adults with ASD often it's quite a lot more psychology input because they are doing a lot of reflection. How long have I had this? How's it affected me? How will I manage? Is the way I'm feeling okay? So often there's not so much of the other allied therapies because they've managed to kind of cobble their way through that so that's often the non-medication-based input.

Moving now on to medication therapy, from my understanding and what I've read in your article, medication isn't used to treat autism, rather the medications are used to help treat or manage comorbidities that someone with autism may have. So I definitely recommend all of our listeners to refer to the table in your article. It's very descriptive and it discusses the drugs and doses, their best indications and adverse effects. As autism is common in children, many of the treatments described are used off-label. What are your comments on, for example, prescribing antipsychotics in children off-label?

Yeah, that's a good question and another one that I get asked a lot. I think the reason why I differentiate medication isn't for treatment of autism, in the same way I suppose that when we look in neurodevelopmental disorder we wouldn't give a medication to treat something that we think is genetically bound, what we do is we really try to sort of treat the symptoms of what that's caused. And so for a number of people, particularly little people, part of their ASD can be severe emotional dysregulation. And severe emotional dysregulation for children who don't have a really high level of emotional vocabulary, who have lots of difficulty interacting with and making friendships with others, who have difficulty from a speech and language point of view understanding and breaking down tasks, the world is a pretty prickly place. So when they're challenged or when they are somewhere where they feel distressed or out of place, and for a number of them it's lack of control, then you can have some quite explosive behaviours. And in good practice, which we should all do all of our non-pharmacological interventions come first. So we do a lot of setting clear routines, strong positive relationships with parents, making sure that we've got good allied health practices and that's translated through home and school, a liaison, a modified program at school.

But if all of that is still in place and the child unfortunately is still highly aggressive and destructive and essentially non-functional, that's when we really consider looking at antipsychotics in children. And it is certainly a step that requires a lot of thinking and discussion about with parents. So I see it really put in place for that circumstance when the actual dysregulatory behaviour is causing that child to literally miss out on so many developmental steps. And we always do a risk–benefit, so we look at all the side-effects of risperidone and aripiprazole and I run through those in a very transparent way with families.

And I think I have a number of families where that's not what they're going to do and that's fine. It's all about choosing the treatment that fits the child and the family and the illness. So the premise always is that you always start low and you go slow and you monitor for side effects and that parents need to have a really good understanding of why you've chosen what you've chosen and what to expect and what your goals are for treatment. And that's what I set with my patients for each time we use a medication.

And my comment is, if we start a medication and the wheels are falling off then we stop it, this isn't a forever plan and you try to really be adaptable and flexible. And I think you have to take that point of view with antipsychotics in children and it can be an amazing improvement. So they can go from not being able to go to school at all, to being able to go to school, have friends, go on their first excursion and their first school camp, and feel good. I don't think we can write them off and say this is inappropriate for everybody but you've got to make sure that you're choosing the goal and the treatment for the child at the right time.

And I mean, another big, I guess chunk of that table were antidepressants?

Yep.

So, do you have any comments about using antidepressants off label in children?

Yeah. Look, the top three we tend to use are sertraline, fluoxetine, and fluvoxamine. Now, why do I use them all? Anxiety can have a significant impact again on children so we're looking for symptoms of panic, anxiety throughout the day, where children are making decisions because they're too anxious to do things, decreased friendships, decreased time in the classroom, frequent or increasing panic attacks, they're all signs, really. If you have all of that allied health in place and you are working with the child in a psychotherapeutic way that's the time I think you consider medication.

And the tricky part with children, yes they're off label which means the dosing doesn't match exactly what you want. Compounded medication is not perfect, it's not made in exactly the same way that it would be if it was actually made originally in the factory where they were making all of our tablets. However, for some children you need to and I have used compounded medication in small amounts. So you might only want, say, 15 mg of sertraline which you can't do in a tablet, or you might want 5 mg of fluoxetine. And those doses can be helpful and they can be therapeutic, and because the same principle of starting low pharmacologically seems to be better for children with SSRIs and SNRIs.

I think you need to look at the dose, consider the side effects. So sertraline can be activating in some children but it has some more evidence of being helpful in, say, Fragile X. It's, again, going back to your resources looking to see what fits. And if we're thinking about side effects for SSRIs and SNRIs are often much less than the antipsychotics. So if you can really help a child's anxiety that is triggering some of the really big behaviours, you can save them from going down that antipsychotic pathway. That's why I suppose in the table I've really outlined the different ones, what they're used for, what the dosing is like, so it allows people to really consider that breadth of treatment.

Yeah, honestly that table is really thorough. And would you say that that table would be appropriate for GPs to refer to or is this more so for people who are specialists in psychiatry?

Again, that's a good question. I got asked that while I was writing it and I think I wrote it based on what I'm asked by GPs and paediatricians. That often GPS and paediatricians have started or have thought about starting a medication and haven't been quite sure the direction to go in. And most of them have made a very good decision and are considering what to do. So I really thought of it for the GPs who look after a lot of children with autism and significant symptoms, and for paediatricians who… more of the neurobehavioural paediatricians and general paediatricians that see these kids, I think it's applicable for them.

Not all of it would be a recipe for prescribing but I'd like to think from a GP perspective if you've got a letter from me and you weren't quite sure and you thought you might want to change medication this would be a resource that you would use, or if you were looking after a teenager you might use it to prescribe. So I try to really have it as a helping answer wondering questions as well as a resource for prescribing.

So you've already gone into it just a little bit. You talked about how the side effects for the SSRIs and SNRIs maybe a little bit milder than the side effects that you may see with antipsychotics. When I was reading through the article and the table and just from my general knowledge in medications, there are some quite concerning side effects. So things like suicidal ideation or polycystic ovary syndrome, extrapyramidal side effects, just to name a few. I mean, just generally speaking, are these adverse effects reversible or are some of these effects long term, is that something that you'd have to discuss with the family and patient if that was the case?

With extrapyramidal side effects, in general if you see them starting and someone's on an antipsychotic, if you cease it in that early period they can disappear and go. If someone's treated longer term then some of those EPSEs can stay and be longer term. The polycystic ovaries is more unusual to see and if someone develops polycystic ovaries, it's a tricky one in that if we overlap that with that obesity and prolactin change if it's related to an antipsychotic, that's all tied together with PCOS.

What I find we need to generally do with a side-effect profile is that I talk to parents. I do the ordinary thing, I pull up the consumer medication information and all the parents go home with that to read. But I actually run through the top 10 side effects, what they're like, why they happen, and then we look at what the risk is. So the other thing to remember is that even when we don't cover the bottom 50, that sometimes your patient will pop up with those side effects.

I think with the SSRIs, the most common side effects I tend to see is that they may not work. They can cause activation, sort of agitation symptoms that for a small portion of people if you use an SNRI, people can gain weight, it's less likely in children. And that suicidality, you're probably aware that some time ago in the US there was a big investigation into SSRI use and suicidal thinking and completed suicide. And they were looking at what's that percentage and they put the black box warning on, which said, if you have increased suicidal ideation it's a risk and if you do you need to tell your doctor.

And if you tell your patients that and you explain the small percentage that it is, so 2% or 1%, and less than that depending on the study that you look at, and you follow the NICE guidelines, you follow the Canadian guidelines, College of Psychiatry guidelines, and you let people know this could potentially be a side effect and you stop it as soon as someone has that and they let you know, that suicidal ideation goes and it allows you to then try another form of treatment. I think it really does all get back to consent and communication and if you have that you can normally manage most of them.

Yeah. Just so our listeners know, we only discussed a few side effects there but definitely refer to the table, there's a lot more mentioned there so please do look at that. That brings us to the end of the interview, it was wonderful to talk to you and I've learned so much, so thank you so much for your time.

No worries, thanks for having me.

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The views of the host and the guests on the podcast are their own and may not represent Australian Prescriber or NPS MedicineWise. I'm Jo Cheah, thanks again for listening to the Australian Prescriber Podcast.