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Health

How national guidelines for support of children with autism celebrates neurodiversity

Until recently, the idea that children with autism should be "cured" and assimilated into wider society has been a prevalent one.

Autism has been viewed as something to be fixed, and children with autism have been taught to behave in neurotypical ways, a process that has often involved intensive therapy.

But all that looks set to change with the release of updated national guidelines for the support of children on the spectrum — and the emphasis is very firmly on neurodiversity affirmation, not assimilation.

Autism affects about one in 100 people, but only about 2 per cent receive a formal diagnosis.

It can affect a person's learning, socialising and wellbeing, making timely access to support and therapies important, especially for young children.

An emphasis on support

The new national autism guidelines are structured to help families and young people identify the right services for their needs.

Guidelines of a similar nature were drawn up in 2018, but they focused on diagnosis instead of therapy.

The current national guidelines will focus on different forms of therapy, all of which highlight support over correction.

The guidelines were submitted to the federal government in late November and their implementation will be announced early next year.

Professor Andrew Whitehouse, the head of the autism research team at the Telethon Kids Institute, was involved in developing both sets of guidelines.

He said the updated advice was particularly progressive in supporting divergence.

"We started diagnosing autism in really large numbers in about the late 90s, early 2000s," he said.

"We were racing to provide supports, and so there was a real, great need to provide support as quickly as possible to as many people as possible."

Guided by human rights 

Katharine Annear is a board member of Autism CRC and was part of the guideline development group because of her professional and lived experience with autism.

She said the 17 principles that underpinned the framework were based on human rights guidelines and provided a supportive framework for delivering therapy.

"I guess the most important and contemporary recommendation is that support should be neurodiversity affirming, and not attempt to cure autism," she said.

She said in the past, the primary goal of therapy had been to cure or ameliorate autism, for people to appear "normal" or typically developing.

Ms Annear said the recommended amount of time for this was 40 hours a week in therapy, leaving little time for play and relaxation.

"It's not necessarily going to create meaningful and lasting skills, and can also be very stressful," she said.

"That insistence on repetition in a clinic also means that the skills might not generalise to the rest of the world, because people might be bound by that context of the clinic, and they might be able to repeat the skill in the clinic, but when they get in the real world, they might not be able to do that.

"So it's about looking at making choices that respect the child and the child's time to also be a child."

Empowering people with autism

The unique focus on neurodiversity-affirming therapies was something Rocky Bay speech pathologist Liz Baird thought would improve the clinical space.

"It was great to see more of a focus on contemporary and progressive principles," she said.

Ms Baird also has autism and said it was important to help people choose appropriate supports.

"And these terms, the kind of general ideas, are very in line with calls from the autistic community and the wider neurodivergent communities as well. So that part is really great," she said.

"The current guidelines definitely draw attention to autistic voices and perspectives and draw attention to potential harms associated with more traditional approaches.

"[It] is very much supporting the validation and celebration of differences and neurodiversity."

Hope for adolescents and adults

Now the guidelines have been developed for children, there is hope something similar can be written for adults with autism.

"Certainly into the future, what we really hope to do is to provide guidance in other areas, such as the provision of mental health support to adolescents and adults," Professor Whitehouse said.

He said adults with autism continued to experience the same barriers as children, which is why it was important everyone had the same support and guidance in accessing therapies.

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