Australia took a significant step towards progress in supporting people with autism last week. The Autism Cooperative Research Centre has published our first National Guideline for supporting autistic children. The Guideline has been praised for its progressive approach, promoting holistic support rather than assimilation.
A group assembled by the ACRC, which consisted of researchers, clinicians, and autistic people, consulted with over 1000 community members and analysed evidence from three systematic reviews of international research. Through this process, the Centre developed 84 recommendations for best practices in clinical support for autistic children and their families.
While many countries have similar best practices recommendations for diagnosing autistic kids, Australia is among the first to have such a list for supporting them after diagnosis.
Furthermore, the Guideline is ground-breaking in its emphasis on tailoring support to individual children.
For example, there are no recommended minimum hours of therapy – a feature present in other Guidelines of this type, such as the New York state clinical practice guideline, which suggests 15+ hours weekly of applied behaviour analysis or related therapies for autistic kids.
The inclusion of recommended minimum therapy hours stems from the long-standing view of autism as something to be ‘fixed’, and autistic kids as needing to be ‘cured’. This goal of assimilation can result in dozens of hours weekly spent in therapy, with little time left for rest and play.
“It’s not necessarily going to create meaningful and lasting skills, and can also be very stressful,” says Katharine Annear, a board member of ACRC and the Guideline development group. “So it’s about looking at making choices that respect the child and the child’s time to also be a child.”
Essentially, the Guideline aims to help clinicians, families and communities supporting autistic children to sort through the complex factors that go into making therapy decisions, in a systematic way. And to do so in a way that affirms neurodivergence, rather than treating it as something which needs to be suppressed and glossed over.
Commenting on the Guideline, “the kind of general ideas, are very in line with calls from the autistic community and the wider neurodivergent communities as well,” says speech pathologist Liz Baird, who has autism herself.
The Guideline is not mandatory, though the ACRC says it hopes the NDIS will adopt it. There have also been some concerns raised about the practicality of the Guideline’s universal application.
“There’s a workforce shortage, and the shortage is most evident in vulnerable communities,” notes Adam Guastella, professor of child and youth mental health at USYD. “If the government is serious about endorsing these guidelines, which they claim to be, they need to put some funding behind many of these statements.”
Hopefully, these concerns are addressed by the government’s promised National Autism Strategy, as mentioned by Federal Minister for Social Services, Amanda Rishworth.
“The evidence-based and inclusive development of this guideline is a demonstration of how the Government will develop its National Autism Strategy,” she said, at the Guideline’s launch last Friday. “Our government has a clear and dedicated vision to improve the lives of all autistic people.
Cover photo by Alireza Attari on Unsplash.
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