About one in every 150 Australian children will be affected by autism [editorial: the diagnosis rate for Australian children was more than 1 in 40 in 2018], with boys more likely to have it than girls.
It's what's called a spectrum disorder, where the symptoms depend on where you sit on the spectrum.
And while we know some things about managing and supporting children with autism spectrum disorder, a lot less is known about how it can affect the mental health of those who have it.
Professor Adam Guastella
Michael Crouch Chair in Child and Youth Mental Health, University of Sydney
Dr Norman Swan
This important story is marred by the short opening phrase which annihilates the presenter's credibility. In Australia, more that 1 in 40 children are autistic (the rate is much lower for adults). These children already have their diagnosis, they are already experiencing their condition. The children who are "affected" includes sibling, classmates, etc. It is a much higher rate.
Norman Swan: About one in every 150 Australian children will be affected by autism, with boys more likely to have it than girls. It's what's called a spectrum disorder, where the symptoms depend on where you sit on the spectrum. And while we know some things about managing and supporting people with autism spectrum disorder, a lot less is known about how it can affect the mental health of those who have it. Professor Adam Guastella is the Michael Crouch chair in child and youth mental health at the University of Sydney, and he is the lead author of a new study looking at the mental health of young people on the spectrum.
Adam Guastella: There's not really one single prototype of someone with autism but we generally look for difficulties in social interactions. So difficulties with eye gaze, understanding other people's points of view, or understanding abstract concepts in social conversations. They often really struggle with group situations and where there's lots of different types of stimulation in that environment, they struggle with lots of noise and lots of things going on and understanding conversations, so often really strong difficulty in those social situations.
Norman Swan: And by definition it's a spectrum, so the spectrum goes from relatively normal functioning to quite a degree of disability.
Adam Guastella: Yes, absolutely, so there's a lot of debate actually where the spectrum ends and where it begins. The cut-off for the autism spectrum disorder term is really about how much impairment does it cause to the person's life.
Norman Swan: And the group of young people that you're talking about are people without intellectual disability, because at the really severe end of autism you've got kids who are intellectually disabled as well as having these communication and socialising issues. We're not talking about them in this?
Adam Guastella: No.
Norman Swan: So what was the question you were trying to answer here?
Adam Guastella: Look, there's really been a lack of awareness around mental well-being and mental health on the spectrum, and what we were really interested in is what is the mental health of people on the spectrum turning up to mental health services, because at the moment there's a lack of research around mental health for autism, a lack of awareness of what to do. And we know through lots of research studies that mental health services often don't know what to do and turn them away.
Norman Swan: And you say this is the first proper study of its kind in Australia.
Adam Guastella: There hasn't been any research that has looked at mental health and well-being from treatment-seeking autistic adults in the mental health services.
Norman Swan: Period?
Adam Guastella: Period.
Norman Swan: Globally?
Adam Guastella: Globally.
Norman Swan: This is it?
Adam Guastella: Yep.
Norman Swan: So you looked at young people turning up at Headspace. We should just explain what Headspace is in case people don't know.
Adam Guastella: So Headspace is a national network of mental health services for young people, young people aged between 12 and 25. That network is there to support young people through their transition into adulthood with a whole range of mental health concerns.
Norman Swan: And they are like walk-in clinics, you don't need a GP referral to turn up.
Adam Guastella: No, and they are meant to be highly accessible and they're meant to be a one-stop-shop for young people.
Norman Swan: So you did this over 10 years and you accumulated young people with a variety of mental health problems. They might have delusional behaviour, psychosis, they might have had depression and anxiety and they might have been on the autism spectrum.
Adam Guastella: Well, what started happening was that young people with autism were turning up to the Headspace services, and the services weren't sure to do, so they would often approach me and say, 'Adam, what do we do about this?' And I look at the literature and say, well, there is no literature on what to do. So we started developing our own research programs around what to do.
Norman Swan: Which starts off by measuring the problem.
Adam Guastella: That's right.
Norman Swan: And what did you find?
Adam Guastella: People turned up to our clinic for a whole range of reasons. They might have wanted more assessments about their autism diagnosis. Their mum or dad might have dragged them in.
Norman Swan: And it might have nothing to do with their autism spectrum but they are feeling anxious or depressed.
Adam Guastella: And they might have had some anxiety and depression, so there's a whole range of reasons why people turned up. And what really surprised us is despite that great diversity we had really, really high rates of depression and anxiety being reported in the population. Like 45% of young people with autism were reporting severe levels of depression and anxiety. That level of depression and anxiety is the same as those turning up with a major mood disorders, major depression and major anxiety disorders.
Norman Swan: And how disabled were they?
Adam Guastella: If we measure it in terms of unemployment, 40% were unemployed. 40% is very similar to the rates of people who've got severe mental health concerns. They are turning up with reporting difficulty working on average about 9 to 10 days of every month, really high levels of psychological distress, and what I mean by psychological distress is how much distress do you feel being alive. And they are reporting very high levels of it.
Norman Swan: Suicidality?
Adam Guastella: High levels of reporting suicidality, yes.
Norman Swan: And when you compared this…you've already alluded to it a bit, but when you compare this to people who walk in the door and the problem is anxiety and depression or bipolar disorder or something like that, was it pretty much on a par if you were at the severe end of those problems or was it anything worse in the group who were on the autism spectrum?
Adam Guastella: What we found was that the disability they were reporting and the mental health concerns they were reporting were very high and that was comparable to the mood disorders, and in fact in many cases more severe than those with psychosis.
Norman Swan: This is a clinic population, these are people turning up to Headspace. It doesn't tell you much about the total population of people with autism spectrum disorder out there, or does it?
Adam Guastella: No, this particular study doesn't, although there has been some wonderful studies conducted over in Europe looking at population rates of depression, just in the general autistic population, and showing very high levels, again, of depression and suicidality. So we know that in the general population there's high rates, and we also know that in those turning up to mental health services there's a real need for service.
Norman Swan: What do you do about this? Do you know what to do about helping people with their problems associated with being on the autism spectrum and that's going to relieve anxiety and depression and psychological distress? Or do you focus on the anxiety and depression and psychological distress because there's not much you can do about being on the spectrum?
Adam Guastella: Norman, the issue really here is that if I have a person with autism that has significant depression and anxiety, the research has not been done, the evidence is not clear about what's effective in terms of treatment, that's part of the reason why they are being turned away from mental health clinics.
Norman Swan: So there will be parents and young people listening to us who recognise that…they will have already recognised they are on the spectrum. What do they do? What's the current advice?
Adam Guastella: What our research shows is that depression and anxiety and other mental health concerns are a really, really important issue. They should seek treatment through mental health services and obtain service from mental health professions if that's the case.
Norman Swan: So GPs should be looking for child and youth adolescent mental health services or specialists.
Adam Guastella: Absolutely. I think that one of the issues in this space is that sometimes when the autism diagnosis is in front of people that's all they see. We need to be taking a more holistic view of people, and recognising their multiple needs, whether it be mental health concerns, whether it's sleep difficulties, whether it's physical activity or social connection, all of their needs need to be taken into account and we need to be providing support for that person, regardless of whether they have an autism diagnosis or not.
Norman Swan: It's complex and requires resources.
Adam Guastella: Its complex, it requires research to understand the best strategies that work, but it certainly requires a response. It's really important to understand that when people turn up to mental health services they often aren't turning up because they are depressed or they're anxious, they're turning up because there's significant disability. They're having trouble obtaining a job, they are having difficulty interacting with other people. People on the spectrum in our sample reported really high levels of difficulty getting along with people, lots of unemployment, and it would have been those factors that is driving attendance. But what we found actually was that depression was the most important predictor for those things. So what we believe is that we are treating the mental health concerns, the depression and the anxiety, we know they play a massive role in participation and disability, that we will have improved outcomes.
Norman Swan: Adam, thank you.
Adam Guastella: Thank you.
Norman Swan: Adam Guastella, who is Professor of Child and Health Mental Health at the University of Sydney.