‘Honorary Gran’ fights for better child autism services

Posted on April 5, 2012

2


The best ‘medicine’ is early identification and early intervention – and too many children are not getting it. 

Olga Tennison – one of Australia’s most generous benefactors for research into Autism Spectrum Disorders – has been made ‘honorary grandmother’ to some 20 children with autism.

Based at La Trobe University in Melbourne, they are the lucky ones – part of a small cohort of 120 children nation-wide who receive early treatment and advanced learning services for their autism each year at six federally funded centres.

Early intervention makes a huge difference to the life chances of people with autism, yet throughout Australia there are about another 2,400 children in this critical age group who are denied such help.

Mrs Tennison, speaking on World Autism Awareness Day this week, said:  ‘Can you imagine how you would feel if you had an autistic child and you were not able to get help, and that child grows up never having reached his full potential. I say “his” because it’s mostly males who are affected by autism.’

First dedicated research centre in Australia

Olga Tennison’s passion for doing something about autism was sparked by a family member affected with Asperger’s Disorder.  In 2008 she donated more than a million dollars to set up at La Trobe University Australia’s first research centre dedicated to these disorders– the Olga Tennison Autism Research Centre (OTARC).

Centre Director, Associate Professor Cheryl Dissanayake, says Olga Tennison should be applauded by the people of Victoria.  ‘Our autism learning centre would not have been possible without her help. Now research and service sit side by side, one informing the other, which is essential for advancing knowledge about these conditions and for developing better treatment programs.’

Olga Tennison, left, with Dr Dissanayake: deaf care could serves as a model

Private intervention costs crippling

Dr Dissanayake says out of the 2,400 Australian children currently in need of these services, some receive private help at home.  ‘Twenty hours of treatment per week costs about $50,000 to $100,000 a year; how many families can afford that?

‘The model we are helping pioneer here is wonderful. Parents pay normal childcare fees, just like any working parents, supported by federal funds, and the children get state of the art early intervention.

‘We are studying closely how these children are changing and developing. Our research shows that every child here has made gains.  They are doing so well, people come in and say these kids are not autistic. We say: yes they are. We characterise them at intake and again at yearly intervals.’

Dr Dissanayake stresses the best prediction of gain is still age of entry into the service: ‘The younger they are, the better they do.’

In view of that, how soon could she see sample community treatment and early education centres like the one at La Trobe replicated more widely? ‘There is definitely a lot of interest in the results we are achieving, but right now there is no financial commitment to build on that.’

Sharply rising rates of autism

Autisms affects one out of every 100 children – or one in 88 according to new figures from America released during Autism Awareness Week.

Debate about whether there is an increase in autism, whether we are just getting better at detecting the condition, or whether there maybe issues with diagnosis, is a red herring.

‘Back when I began as a PhD student in 1984, the figure was one in 2,500. Even then, those children were not receiving anywhere near the help they needed. Now they are receiving even less because there are so many more.

Families’ Minister Jenny Macklin and then Parliamentary Secretary for Disabilities and Children’s Service, Bill Shorten, at the La Trobe autism child care centre in 2008.

‘The bottom line,’ says Dr Dissanayake, ‘is that every child with autism deserves what these children are getting. 

‘We create the programs and then we replicate them – and we are also exploring options for trying to reach more families and more children with our services. It costs money, but the long-term costs to society of doing nothing may well be greater.’

She says the government mandated the six ‘model centres’ to be set up in collaboration with a hospital or a university. ‘We are in a privileged position because ours is set up with both, The Olga Tennison Centre at La Trobe and the Royal Children’s Hospital in Melbourne.

Need for high-profile public champion

Olga Tennison says autism in Australia needs a very high-profile public champion. Autism Awareness Week, while public buildings like the Federation Square in Melbourne and the Sydney Harbour Bridge were lit up in blue, attracted very little media coverage. 

Ideally she would like to see someone make a television program such as Britain’s ‘Seven Up’, focusing on autistic children. ‘That would really highlight the issues, and maybe help bring about a change in community attitudes and funding support.

‘We do a lot for children who are born deaf,’ she says.  ‘When I was young I met a deaf girl, a very attractive girl, who spoke in that strange and almost incomprehensible way in which totally deaf people spoke in those days. Today I know a young woman who is completely deaf – and she speaks the same way I do.

‘So more help is needed from government for people who have autism in the family and who can’t afford it.  Every one has the right to education. Australia should be able to give all young children with autism the same opportunities that are available to those at this centre.’

Dr Dissanayake agrees. ‘If a child has diabetes, no one says, let’s give him only half of the medication, and we’ll see how he goes with that.  But that’s exactly what is happening in Australia with autism. There would be outrage if we withheld medical treatment from other children.

‘Irrespective of whether we fully understand the biological causes of autism, the reality is affected children are not receiving the “medicine” they need. They have a neurodevelopmental disability. Their “medicine’ is early identification and early intervention – and they are not getting it!’

The Margot Prior Wing

● La Trobe’s Autism Specific Early Learning and Care Centre is  housed in the Margot Prior Wing of the University’s Community Children’s Centre on the main Melbourne campus at Bundoora.  Adjunct Professor Margot Prior, one of Australia’s leading childhood development and autism experts, is Chair of the Advisory Committee of the OTARC.

Click here to learn more about how to support autism research