Kids on the autism spectrum need to be embraced and any support provided to them should honour their childhood.
That is according to Australia’s first national guideline for supporting the learning, participation and wellbeing of autistic children and their families, which was developed by Autism CRC, the world’s first national, cooperative research effort focused on autism.
Autism CRC brought together a group of clinicians, researchers, and autistic adults to write the guideline, the development of which was co-led by Professor Andrew Whitehouse, Director of CliniKids and the Angela Wright Bennett Professor of Autism Research at Telethon Kids and The University of Western Australia; and Associate Professor David Trembath from Griffith University, Telethon Kids and CliniKids.
Professor Whitehouse, who is also the Research Strategy Director at Autism CRC, said the guideline represented a landmark moment for autism in Australia and was the culmination of a decades-long effort to build better evidence into clinical practice for autistic children.
He said the guideline included 84 recommendations — all approved by the National Health and Medical Research Council — which outlined the best ways of providing clinical support to autistic children and their families.
Federal Minister for Social Services, the Hon Amanda Rishworth MP, launched the guideline in Canberra in February.
“For too long there’s been misinformation and a lack of evidence-based practice when it comes to autism therapies,” Professor Whitehouse said.
Now, for the first time, families of children with autism will have a clear description of what is and what is not safe and effective clinical practice, and a roadmap to empower their choices.
Professor Andrew Whitehouse
“The guideline will help families understand what evidence-based therapy looks like, and how they can use this information to navigate the best pathway for their child.
“The recommendations provide a framework through which evidence- based practice can be implemented across Australia.”
CliniKids Research Development Manager Sarah Pillar, who helped write the guideline, said the document provided better guidance to clinicians about what represented good autism practice.
The Guideline was developed by the Autism CRC and included researchers, clinicians and peak consumer bodies from Telethon Kids Institute, The University of Western Australia, Griffith University, Victoria University of Wellington, University of New South Wales, Positive Partnerships, University of Southern Queensland, Autism Queensland, La Trobe University, and the University of Sydney
Language key to autism inclusivity
We know words matter and now new research looking at autism terminology has shone the spotlight on what autistic people want you to call them.
The research — a collaboration between Telethon Kids Institute’s CliniKids, the University of Auckland and Victoria University of Wellington — has called for an update to the language used to describe autism in studies, and more broadly, to reduce stigmatisation, marginalisation, and exclusion of autistic people.
The inclusive language guide was co-authored by autistic researcher Dr Ruth Monk, Professor Andrew Whitehouse and Hannah Waddington.
Professor Whitehouse, the Angela Wright Bennett Professor of Autism Research at Telethon Kids and The University of Western Australia and Director of CliniKids, said the past three decades had seen a major shift in our understanding of the strong links between autism and identity, prompting a need for careful consideration of the language used to describe autism.
“Historically, most autism research has been carried out without input from autistic people and this research has often described autism and autistic people using medicalised and deficit-based language such as disorder, impairment, and person-first language,” Professor Whitehouse said.
“Part of conveying all the amazing things and ways that we can support autistic children to become happy healthy adults is actually changing the way we talk about it.”
| IN | OUT |
|---|---|
| Autism, autistic | Autism Spectrum Disorder |
| Identity-first language i.e. autistic person | Person-first language e.g. person with autism |
| Autistic experiences and characteristics | Autism symptoms and impairments |
| Increased likelihood of being autistic; may be autistic | At risk of autism |
| Specific support or service | Cure, treatment, or intervention |
| Allistic or non-autistic | Normal person |
Pictured: Professor Andrew Whitehouse, Associate Professor David Trembath, Sarah Pillar and Dr Rhylee Sulek in Canberra for the launch of the guideline