Transcript

Autism Research with Cheryl Dissanayake

25 August 2008

cheryl-dissanayakeDr. Cheryl Dissanayake

You can also listen to the interview [MP3 11 Mb].

Matt:

This is the La Trobe University podcast, I'm your host Matt, and joining me today is Dr. Cheryl Dissanayake, she's the director of the Olga Tennison Autism Research Centre and a senior lecturer in psychological science at La Trobe. Thank you for joining me, Cheryl.

Cheryl:

Hi Matt, how are you?

Matt:

Good thanks. So you're here to talk to me about autism research and the different projects that are going on at the Olga Tennison Autism Research Centre. How did the centre get started here?

Cheryl:

Well that is an exciting story in itself. I'm the convenor of the autism spectrum disorder research reference group at Autism Victoria and in that capacity I came to meet with Mrs. Tennison. And she wanted to know how to promote research into autism because she felt there was not enough being done.

Matt:

And who is Olga Tennison? She's clearly someone important to autism research if you've named the centre after her.

Cheryl:

Yes she certainly is, we've named the centre after her in recognition of her generosity, because what she did was she gave us half a million dollars to establish the research centre at La Trobe and she did that on the condition that La Trobe would actually match that donation, and indeed La Trobe did do that, and so together with the support of La Trobe we were able to establish the Olga Tennison Autism Research Centre. She is a community based individual and she has a family member affected with an autism spectrum disorder and has felt for a long time that not enough is done for autism, in particular research, and she's quite right there because there really isn't enough funds for autism research in this country. So we talk about between 1:160 to 1:167 children being affected with autism or an autism spectrum disorder and given that it's not an uncommon condition, but there still isn't really sufficient monies in this country to research into autism. In fact there's approximately $10,000 a year annually that's dedicated to autism research, and that's through the APEX trust for autism.

Matt:

That's nothing.

Cheryl:

That's nothing. It's absolutely nothing. And so there's no dedicated funds for autism research so the donation has been an enormously generous one and a shot in the arm for promoting research into this complex body of disorders.

Matt:

Yeah. The centre was officially opened on the 27th of June, you had your launch there, and you had some success as far as funding goes?

Cheryl:

Yes, well the launch was very exciting. We had Bill Shorten, who's a parliamentary secretary for disability services open the centre and at the launch the donor quite surprisingly, I had no expectation, anticipation that she would do this, gave us another half a million dollars at the launch. And La Trobe University promised to match that on the spot. So we went from a one million dollar centre into a two million dollar centre within an hour of launching the centre so it was really very very exciting.

Matt:

Wow. That must have been great.

Cheryl:

Yes it was! The launch went off very well, far better than I'd anticipated!

Matt:

Many people in Australia would know someone who's affected with autism in some way or another. I personally know someone who's been affected by autism, who has autism in their life. How is this research going to be important to all the people who have autism?

Cheryl:

Olga didn't only, in making her donation it was important for, obviously terribly important for La Trobe, it's terrific, it's important for autism researchers like myself. But it is important for people with autism because the research can inform the day to day development of these children in that one of the main objectives we have within the centre is to promote awareness about autism. And we want to do that for a variety of reasons. One of the main reasons is that once you promote public awareness of autism you promote a sympathetic reaction to this situation.

For example, people with autism look perfectly normal, there's no physical markers that they're autistic, but families really do suffer from the reactions of other people, to children behaving badly in a supermarket. A mother I know has got a t-shirt printed saying ‘don't stare at me, I'm autistic' because when she takes her child to the supermarket and her child acts out because of sensory overload people then decide to tell her about her parenting skills. And so lots of families suffer from this day to day abuse, you know, and I think if we're more aware of autism and what autism looks like and the features of autism it would promote sympathy. And it's not that the families with kids with autism are looking for sympathy, but they're looking for understanding.

So one of our really keys things within our centre is to promote awareness, but the main thing with promoting awareness is that when people know about autism you're very likely to identify autism, and identify it earlier. So one of the big focuses within our centre is to try and promote the early identification of children with autism, and we're doing a large study looking at training. What we've done is trained 240 maternal and child health nurses on signs of autism in infancy and this is part of their regular monitoring of children. They identify children at risk, they then refer them to us, and we follow up those infants til they're toddlers and at 24 months we undertake a diagnostic assessment. And we've found that 80% of the children referred to us do indeed have an autism spectrum disorder. All but one children out of 110 so far are developing with a disability, so the 20% that aren't meeting criteria for autism are either meeting criteria for a language delay and or developmental delay.

So in training maternal and child health nurses what this study has meant is that it's identified children much earlier who aren't developing typically and the majority of those children are developing autism. So that in identifying them early it means that then those families can access intervention services much earlier. Getting intervention, the outcomes for those children is much better. So you can see how it's not just awareness in the community, but it's awareness amongst community based professionals who are working with young children. In promoting community awareness you can promote early identification which rolls out into developmental outcomes for those children.

Matt:

So what sort of symptoms are you looking for, what are you looking for to help identify that a child might have autism?

Cheryl:

Well what we train nurses on are the signs that a child isn't developing reciprocal interaction with other people, and by reciprocal I mean it's not, some children will respond to other people's initiations of interaction but the interaction is qualitatively different, the child doesn't use his gaze or eye contact in the same way with others, the child doesn't gesture in the same way, so we're talking pre-verbal.

These are non-verbal children, they don't yet have language and we can still identify that they are not developing signs of communication early on, so the child might not respond to their name being called. The parents often think that these children are deaf, and they refer to for hearing tests but their hearing is perfectly normal but the child is not responding to social stimuli in the same way. Normally developing infants start to wave and clap their hands around 8-9 months, certainly by twelve months. These babies aren't processing the social world in the same way so aren't picking up these signs, aren't imitating in the same way. It's not that they can't, it's not that they can't clap, or they can't wave, but they don't initiate these behaviours like typically developing children do. They don't look and smile in the same way, their gaze and their eye contact aren't co-ordinated.

And you can train maternal and child health nurses, and G.P.s, and paediatricians to identify that these behaviours aren't coming online in the same way. Train them to do this before language occurs, because it's usually the failure to develop language that becomes fairly evident at around 2, that leads into the diagnostic process, into the referral and diagnostic pathway. What it means is that also because of the waiting lists, the child isn't then formally diagnosed until 3 or 4 and then doesn't access intervention in a timely fashion.

Matt:

So I know you're not very far along your program here, but how can early intervention like this change the development of a child with autism?

Cheryl:

Well we know a lot now about the developing brain and about genetics in particular, about the field of epigenetics to know that the environment impacts on early brain development, the environment impacts on the methylation of genes, it can switch genes on and off which can impact on brain development. So that fostering typical environments for these infants who are developing atypically can then inform their brain development, can effect how their brain develops, how their genes are switched on and off to code for relevant proteins in brains to develop more typically. And so early intervention is critical because we can actually alter brain development by intervening early so the developmental outcomes are much more positive. What you're actually doing is you're not curing autism. What you're doing is you're minimising the effects of the disorder on the developing child. So by promoting early identification you're really promoting the possibility of change for these children.

Matt:

One of the problems that come to mind about a research problem like this is time. Timing would be very important, early intervention would be important, but also it would take years to know whether your treatment is having any real effect on children like that. Is that something that's going to keep changing the sort of things that you do as far as autism treatment is concerned?

Cheryl:

Well we'd really like to look at, do evaluation of treatments particularly early treatments. What you need to do of course, and this is the wonderful thing about having the funding and having the centre, is longitudinal studies are hugely important. So for example, we're following up the group of children that we've identified through our early identification study.

Matt:

How long ago was that?

Cheryl:

The study has been underway for two years so the screening within the maternal and child health centres finishes in October. Currently we've seen about 110 children being referred to us, 80% who are meeting criteria for autism. By the end of the study in October we'll have between 120 to 130 children. And so what we're doing is we've just received funding, we've just been successful in a grant we've applied for to the Helen Macpherson Smith Trust to fund a follow up study. And so we're now seeing these children between 3 and 4, and what we're going to look at with this study, quite apart from diagnostic stability of course and the developmental outcomes, is to look at what services they've been accessing and what intervention programs have access so we can actually look at the relationship between receipt of intervention and developmental outcomes. So that will inform us whether what they've been receiving is efficacious and it is promoting positive development. And so we hope to follow up this same group of children longitudally to look at developmental outcome and what we're really hoping is that this early identification will have promoted better developmental outcomes for these children then for children who have been diagnosed later at around 3-4 years.

Matt:

What other research is there into autism in Australia at the moment, do you know of any?

Cheryl:

Oh yes, look there is research into autism taking place in most Australian universities. There's autism researchers across the country, but what there hasn't been up to now is an established research centre dedicated to researching autism spectrum disorders, so this is really exciting for Australia and certainly for La Trobe to have Australia's first dedicated autism research centre here. There's wonderful autism research centres in the United States and in the UK as well but none to date in Australia, so this is it!

Matt:

If people want to find out more about the Olga Tennison Autism Research Centre, where can they go?

Cheryl:

Well we've got a website, and that's at www.latrobe.edu.au/otarc.

Matt:

Dr. Cheryl Dissanayake, thankyou for your time.

Cheryl:

Thankyou, Matt.

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