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Beth: So my name is Beth. My partner and I, we have two boys. We have Tim who is 5 ½ years old and Ben who is 4 – 4 years old. Just over 4 years old. We always thought that Ben was a bit odd. He was a bit different. And we don’t have a lot of other children to compare him with, really only his brother, and a lot of neighbours in our street but he always was just a little bit different.
Hayden: That was Beth and her experience is one that is becoming more common. Welcome to the better healthcast. I’m Hayden Nicholls and today we are talking about autism spectrum disorder.
164,000 Australians are living with autism. That’s one in a 150 people as of 2015. ….are identified as having a disability.
Yet it’s still not a condition whose effects are well understood in the community. What’s the effect on children diagnosed with autism and how can their parents support them and help manage their condition. To help demystify ASD and its effects I’m speaking to Professor Cheryl Dissanayake from the Olgsa Tennison Autism Research Centre based at LaTrobe university. Thanks for your time.
Professor Cheryl Dissanayake: Hello.
Hayden: How early can ASD be identified? Are there some classic symptoms or indicators that parents should be on the lookout for?
Cheryl: Yes. ASD can be identified quite early. We know now that the onset of Autism is variable across the first two years of life, so some babies will be born and parents will say things like, the minute I held him in my arms I knew there was something wrong. So, some babies will show signs from birth. Other babies will seem to develop typically and then just plateau, where the development doesn't proceed in the expected way. And yet other babies will develop typically, develop language, and then lose skills.
Babies communicate with people right from the time they're born, and the baby will gaze to others and then at about four weeks to six weeks start combining the gaze and smiles to communicate. These signs will be shown by some babies who develop Autism but then they won't progress in the usual way. Other babies might not show those early signs.
At around eight months a typically developing baby will start to imitate what others do. And the baby developing Autism might not be engaging in the usual way with other people, so the newborn infant and the early developing baby is very honed into other people. They're very interested in other people, they look at other people more than they look at objects.
Many autistic babies don't show that pattern of development. They're not as interested in people's faces and voices and so on, so the signs are there from early on, but again, as I say, not in all babies.
Now the signs that we find most useful in identifying Autism early are certainly eye contact, combining smiles and communication gestures with eye contact, so it's not that baby with Autism doesn't smile but when he does, he doesn't couple it with gaze to share affect with other people. He mightn't follow your point or point himself, so a typically developing baby will start to point at about eight to nine months and will start to share the world with their caregivers, and then at about 12 months will start pointing themselves, to point out interesting aspects of the world to others.
So, we use those behaviours to indicate the likelihood that the baby might be developing Autism. Is the baby imitating? That's another early behaviour that we look for. Babies wave. You know, one of the first gestures babies show is waving, so we look for the use of gestures in the developing infant and toddler.
So, these are some of the key behaviours that can tell the primary care professional, the parent, that something might be amiss with this young child, and then as children start developing language, language doesn't come on board in the same fashion and at the same age that you would expect it. So, by 12 months single words are starting and by 18 months we see a sudden flood of words coming out. So, you might not see that happening in an autistic baby.
So, when you put these signs together you can use those signs to indicate likelihood that this little one may be developing Autism, and what we do is advocate then that babies should be seen by a primary care professional and sent for developmental and behavioural assessment.
Beth: Before Ben was diagnosed with ASD I must admit I don’t think I understood very much about it at all. I certainly knew the word. I certainly thought I had a baseline understanding of autism but in hindsight really – really not very much.
The diagnosis and – it has actually been a huge relief to us. It’s allowed us to really understand what autism is and how Ben is different and by understanding more we’ve been able to help him much, much more than without that diagnosis.
Hayden: What does the current research tell us about possible causes of ASD?
Cheryl: So, the causes of Autism Spectrum Disorder are many and varied, and much of the causes are still ill understood. While we know that the causes of about 1% to 2% of these spectrum conditions, the remainder of the Autism Spectrum is what we call Idiopathic Autism, meaning we don't know the specific causes. But these are biological conditions at its basis, they're genetic conditions. Some of the Autisms are familial, meaning that it runs in families, whereas the other Autisms don't appear familial but are certainly different genetic conditions.
So, some might arise from what we call de novo mutations, meaning spontaneous mutations, and others by having someone in the family already affected. So, we still don't fully understand, the exact causes but we do know that the brains of those with Autism develop differently, and I really think that what we're seeing here is a body of conditions where the behavioural criteria are common, but the different etiologies are many and varied.
Hayden: Is there a link between older parents and ASD or is that a misconception?
Cheryl: Certainly, one of the identified risk factors has been paternal age, the father's age. And of course, we're older now when we have our children so that certainly is likely to have some role, but also marriage breakdowns are much more regular and fathers are more often sponsoring second families. So, again, when you sponsor a second family you're older, so that certainly seems to be one of the risk factors.
But there are many risk factors. Premature babies now survive whereas in the past they didn't, so prematurity is a risk factor for many neuro developmental conditions, and Autism Spectrum conditions are neuro developmental conditions, so again, that's a risk factor which is increasing over time.
Hayden: While a parent may have an idea that their child is different a formal diagnosis may take some time.
Beth: So the process for diagnosis for us was that because he wasn’t showing the very typical signs of ASD right from the beginning – or lots of them, we progressed with the early intervention program. We progressed with our private speech and private OT.
And we worked on – we worked on the milestones which were learning how to walk, you know, learning how to jump, speaking, making sentences, being understood, all those typical things that we did.
Hayden: If a parent identifies some of these indicators or they have concerns about their child, what's the process to get a proper diagnosis? And who should they see?
Cheryl: If a parent has concerns about their young child's development, and they're living in somewhere like the State of Victoria, where we have an excellent maternal and child health system, certainly that's a good first point of contact. They also have their GPS or their paediatricians. They should raise concerns and if they feel they're not taken seriously, they should go and see someone else and get a second opinion.
We tend to get second opinions on our cars, we tend not to do that with our own health and wellbeing, and so that's really important because I think we have to really follow into parents' concerns and not treat them as overly anxious parents and so on, because often parents are dismissed only later to find out that in fact their concerns were real, and the child has a diagnosis later down the line. So, if a parent has concerns about their child's behaviour, they should raise it with a primary care professional.
Beth: Once we had the diagnosis we did change to a more specific early intervention program, more specific therapies. We became funded by the NDIS we – we sort of shopped around, in a sense, or moved around and spent our therapy money at various different early intervention programs and different social therapy groups. Hydrotherapy, various other things. But once it became obvious – or the diagnosis came through of autism we now have the vast majority of our therapy with the La Trobe autism specific therapy. It’s called Autism Playmates.
It is quite high intensity therapy. It’s 10 hours a week minimum. The therapist writes some very specific goals which are broken down into very specific tasks within those goals. And then a therapy assistant comes out to our home and to Ben’s kinder room at childcare and works with him to achieve those goals.
Hayden: What are some of the complexities of raising a child with Autism Spectrum Disorder? Are there complexities to the situation?
Cheryl: So, often you will see challenging behaviours in Autism and people think the challenging behaviours is what Autism is. It isn’t, the challenging behaviours we see in Autism are a result of frustration on the level of the individual the child, the pre-school child, the school aged child in not being able to communicate and get their needs met. So, they get frustrated. So, you get behaviours like head banging and self-harming. Those aren’t Autistic behaviours, they are simply what we call secondary manifestations.
So, as soon as you have a child with Autism, what we want to do is try and give the child a means of communicating with other people so that their needs can be met. The Autism doesn’t travel alone. Often, Autism travels with associated conditions like sleep difficulties, anxiety is highly common in Autism and later manifests itself in depression as well. So, people with Autism have a higher likelihood of having anxiety and depression. They have a higher likelihood of having sleep difficulties and all of these things feed into each other. So, it often is making sure that those aspects, those associated aspects are also supported in a meaningful way. You can imagine a parent who has a young child with Autism who they are trying to get supports for, but then the child is not sleeping and as parents, we all know how difficult it is when our children are very little and not sleeping; it reduces us.
Hayden: So, this compounds?
Cheryl: This compounds, and this is why often these families are so stressed, because they don’t have resources. They are probably not sleeping because their child with Autism is not sleeping, so with good professional help, all of that can be adequately managed. So, it is just building much more knowledge, and understanding and awareness. Parents report to us the looks they get in supermarkets and the very unhelpful parental advice they get because their child is having a meltdown and that child is labelled as a naughty child and the parent is labelled as not a very good parent.
We, as a society, add more burden on a family who is already trying to cope with a difficult situation. So, people with Autism can achieve great things and it is also keeping that in mind for the parent, so that they can then grow and develop with their child rather than projecting further down the line about what is going to happen to that young person, because none of us know what is going to happen, as parents, to our young people.
Hayden: Professor Dissanayake illustrates a couple of examples of how several young people with ASD have found their niche.
Cheryl: I was at a conference last year and I was told about this Autistic child, and I could be getting this wrong, in a Danish village. Maybe it was a Swedish village and this young person loved breaking glass. He loved the sound of breaking glass and he liked shattering glass, so you can imagine that that could be quite a challenging behaviour in a household and in this village, they decided to give this young person the job of collecting the bottles from houses.
So, he went from door to door collecting the bottles and then he would dispose of the bottles in the bottle dispenser, where he could put these bottles into the dispenser and hear them crash, so that was one of his repetitive behaviours and interests, so they solved this problem that the family was having. This young person suddenly had a job, he was collecting bottles from the household. He had a little wagon that he used to take from door to door and collect these bottles and at the end of this, was the reward. He would be able to smash them into the bottle can.
So, I just love that story because it illustrates that I think we can be cleverer and I think Autistic people can think out of the box and maybe we can solve some of these solutions with them, rather than for them.
Hayden: That is a great story.
Cheryl: Isn’t it great, and I saw a film of it and it was just wonderful. It was like wow. It is one of those feel good story of course. That is what I say, parents who are able to look at the behaviour and find a functional solution for it. I have got a father who is in China and when they brought up their son in China, there was hardly anything in China. Michael is now in his late teens, early 20s, and they just solved … This boy had a fascinating with ancient Chinese characters. So, they got him all of these ancient Chinese texts and he started writing the ancient Chinese text.
So, whatever behaviour he showed, they followed into that. So, the banging on his leg, they gave him a drum. He is now a musician. He performs in Beijing opera. He is amazing. But it is having these parents, because they didn’t have treatment and so on for him, they just became the treatment and took this approach and it is a wonderful case study, but there are many of those sorts of case studies where parents themselves have problem-solved obviously these are parents with great resources, you know, Dad has a PhD and so on, but if we can kind of work with the parents to help the parent to see the child and not as “Oh, you know – this child now, you know, this child didn’t have a diagnosis or a label as they refer to it and now the next day the child does, that child is the same child. Helping the parent to see that that’s fine. We can work with this child getting in to a space for the parent to kind of see some of the positives in the behaviour. Some of the behaviours mightn’t be positives, but being able to turn them into positives, and some of my best treatments use that. … So, it is like doing what the child does, following into their behaviour and then extending out of that to make it meaningful to the child. So, a lot can be done, but there is so much more that needs to be done.
Hayden: Beth agrees that while wider society can do more, that things are getting better for young people like her son.
Beth: I think my outlook now is extremely positive. I think that I’ve learnt that autism is just somebody’s brain is wired differently. It’s just another area of diversity that we as society need to embrace.
I think my outlook now is extremely positive. I think that I’ve learnt that autism is just somebody’s brain is wired differently. It’s just another area of diversity that we as society need to embrace.
People are born different and people are born with their brains wired differently and there are many, many things that society can do to assist people who are different. And we’re probably in a sweet spot at the moment in diversity in Australia and I think that people are becoming more and more open to understanding that people are intrinsically different and I think that that will only get better and better over time. And obviously Ben – Ben is living in a world that is different from the way he was born so he has to do a lot of adjusting too. So it’s up to us all to help him adjust. But it’s also up to us to adjust to people with autism as well.
And I feel very confident that society is moving in both those directions. That he will get the assistance to help him live in a typical world and that the world will change as much as possible to accommodate people like him.
Hayden: Thanks so much to Professor Dissanayake and Beth for taking the time to talk to us. For more information on Autism Spectrum Disorder you can visit the Better Health Channel of course, we’ll put in a description and you can find useful information there like tips for parents and a list of support services, find us at www.betterhealth.vic.gov.au. There’s also the website for Amaze, the peak body for people on the Spectrum and their supporters. There’s lots of information there. Go to www.amaze.org.au and if you’re interested in the work of Professor Dissanayake and her team, you can check out the Olga Tennison Autism Research Centre’s website. You’ll find information there for families, individuals and health professionals. It’s at https://www.latrobe.edu.au/otarc.
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