Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Disclaimer: The Parliamentary Library does not warrant or accept liability for the accuracy or usefulness of the transcripts. These are copied directly from the broadcaster's website.
Australia launches first autism biobank -

View in ParlViewView other Segments

DAVID MARK: Australia's first autism biobank has been established to help researchers develop an earlier and more accurate diagnosis of autism.

The biobank will contain detailed biological and behavioural information collected from families, which has a member with autism.

It's part of a renewed emphasis on helping adults with autism, rather than just concentrating on children.

Nance Haxton reports.

NANCE HAXTON: Harrison Fischer is a mad Hawthorn fan, who loves pulling together the football tipping competition at his workplace.

He also has autism.

He says many people like him would also love the opportunity to work and contribute to society.

HARRISON FISCHER: Well I'm 21 and I have autism; I work at St Monica's Primary School in Wodonga two days a week.

NANCE HAXTON: What do you do there Harrison?

HARRISON FISCHER: Updating the stuff to do with computers.

NANCE HAXTON: And how long have you been doing that for?

HARRISON FISCHER: Approaching two years.

NANCE HAXTON: And what do you think of going to work?

HARRISON FISCHER: I'm pretty good, work hard, get to see people, some people I've known for years.

NANCE HAXTON: How important is that do you think for people with autism to be able to go out and work?

HARRISON FISCHER: It's really important because I mean, autism people have special skills that in the workplace that you enjoy it's a lot easier.

NANCE HAXTON: Despite increasing awareness of autism, diagnosis is still problematic.

The Cooperative Centre for Living with Autism is hoping to change that, with Australia's first biobank.

Chairman Judy Brewer says currently in Australia diagnosis of autism is still based on behavioural profiling of the child, teenager, or adult, in an expensive process that can take many months.

JUDY BREWER: Understanding is other subtypes in autism, we know it's a very generic condition, we call autism spectrum disorder you know, this great big broad spectrum with people who, in some ways have very little in common with each other, except a couple of key features.

So if we can break down that spectrum into understanding where on the spectrum some people sit, what's the best way they can learn, they can achieve their full potential, that will mean we can target treatments a lot better. And that is the core.

NANCE HAXTON: Ms Brewer says it's hoped the data collected for the biobank will help develop a national accurate diagnostic protocol.

JUDY BREWER: It's a very large national asset that we are developing to increase understanding of autism.

NANCE HAXTON: It's the first time this has happened?

JUDY BREWER: It's the first Australian large scale biobank, there have been smaller biobanks, but not to have public access or access to the research community to use in Australia and internationally.

NANCE HAXTON: Biobank I suppose sounds perhaps a little intimidating, can you explain to us what that actually is?

JUDY BREWER: So we're currently collecting blood samples, saliva; we're extracting DNA - to use the data from those samples. But we also, as well as the blood samples, we are also collecting phenotypic data, so that is the behavioural. So we overlay to get increased understanding, we can overlay what we learn from the science of the samples with what we see in our children and adults, people with autism, behavioural, as well as comparing them to controls of people that don't have autism.

NANCE HAXTON: The cooperative's CEO Andrew Davis says it's part of a renewed focus on creating better outcomes for adults with autism.

ANDREW DAVIS: Looking at adult life, which has been an area that's been much under researched and supported for many many years now, we quote the figure that you spend 75 per cent of your life as an adult and only 1 per cent of the research dollar worldwide has been spent on interventions and support for adults.

NANCE HAXTON: Is that changing?

ANDREW DAVIS: It has to change and it's fundamental for what we're doing that we're changing that. The adult community is rightly demanding more and more support now, and we're going to meet that need.

NACE HAXTON: Has the NDIS helped bring that focus as well do you think?

ANDREW DAVIS: It's certainly brought a focus to it. I think through the trial sites, the Government has seen that there is a significant amount of representation of adults on the spectrum in their trial sites and they realise that that's going to be a major challenge to be met through the NDIS (National Disability Insurance Scheme).

The work that we're doing, it's very much focusing on helping adults become participants in the community in a full way - so that's socially, in employment, through further education, we're trying to develop tools that remove the barriers to employers, as well as the potential employees, to get gainfully employed people on the spectrum.

NANCE HAXTON: Is it possible for people with autism to get a job, to have a, hold down a job?

ANDREW DAVIS: Absolutely. There are people with autism that are holding down jobs right across our community, and we have found that there are now programs being rolled out that are focusing on matching the skills that are actually enabled by autism, those particular skills that people with autism have to roles.

And a large part of what we're trying to do is understand those skills, those desires of young adults and adults on the spectrum in terms of employment and working with employers to understand how they better enable their recruitment processes and their employment environments to match those, and have the people on the spectrum fully employed.

DAVID MARK: That's the CEO of the Cooperative Centre for Living with Autism Andrew Davis, ending Nance Haxton's report.