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Toolkit for autism diagnosis: connecting families with support, sooner

New toolkit released to support clinicians in impl
Photo: New toolkit accurate, consistent autism diagnosis and assessment
A new resource has been launched to help clinicians implement best-practice guidelines for the diagnosis of autism, with hopes this will lead to earlier access to intervention and support for children and their families.

Professor Andrew Whitehouse, Autism CRC Research Strategy Director and Chair of the National Guideline Research Executive Committee, said that “the diagnosis of autism spectrum disorder has always been a thorny issue all around the world.”

"There is no biomarker for autism, so we diagnose based on observation of behaviour”, he told HealthTimes.

“But observing behaviour is a subjective measure, so having consistent and accurate ways in which we can measure those behaviours to provide a diagnosis has always differed.”

That’s why in 2018, the National Guideline for the Assessment and Diagnosis of Autism was released to provide a clearly defined pathway to meet support needs.
“But it’s not good enough to just develop a guideline – it actually has to be used. If it just remains on a shelf, it’ll fail”, Professor Whitehouse said.

Bringing together a range of user-friendly resources, the National Guideline Implementation Toolkit makes an important contribution to nation-wide implementation of the Guideline.

The Toolkit aims to improve clinician knowledge of best-practice assessment and diagnosis procedures and provide them with practical tools for use in clinical practice.

“The first thing to do was provide a way for clinicians to understand very quickly how they’re going and what their current practice is looking like in relation to the guidelines, so we developed a quick and simple self-audit tool for clinicians”, Professor Whitehouse explained.

“Our next step was developing a whole lot of informational videos. The guideline has 1000 pages of supporting evidence, and we know now one is going to sit and read all of that, and nor should they.”

“The more important thing for them to do is provide supporting care to patients, so we needed to provide really user friendly ways for people to digest and understand the different aspects of the guidelines and how they can apply them in their particular context”

Professor Whitehouse is confident of the benefits the guideline and toolkit will offer for both patients and the community.

“There will certainly be better access to assessment services, and an opportunity to get our interventions and support mechanisms in as early as possible to support that child and their family throughout life.”

He said that a key objective of the guideline and toolkit is to encourage good clinical practice.

“We are lucky in Australia to have clinicians that are among the best in the world, and we need to ensure we’re using all that talent and skill in the right direction, according to the evidence base the guidelines set out.”

The final thing that the guidelines hope to deliver is national consistency when it comes to assessment and diagnosis

“It’s not unusual for children to cross state borders and have to receive another diagnostic assessment. It’s even more common to be diagnosed in the health system, only to reach school and be required to have another assessment in the education system”, Professor Whitehouse said.

“We’re hoping this finally provides consistent language so that all systems in Australia can understand and speak with one voice.”

Professor Whitehouse said Australia was fortunate to have seen significant improvements in the understanding of autism in the last number of years. 

“I’m lucky enough to have been in the field for 20 years, and I remember when I started, all people knew about autism came from the movie Rain Man - now if you say ‘Rain Man’ to a whole lot of people, they won’t even know what that means!” he said.

“What we’re certainly understanding more in the community is to look beyond the label of autism. I think when a diagnosis of autism is provided, it’s an important part of the clinical pathway, but we tend to focus on the name rather than the individual.”

“Thanks to the greater understanding we have now, we’re firstly asking not just what people are but who they are – we know that autism is as broad as humanity itself and that the label in some instances is not very meaningful.”

“That’s the great improvement we’ve seen in recent times, that yes, the label is there, but we’re starting to understand that every individual is unique in their own way and should be cherished.”

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Charlotte Mitchell

Charlotte is a published journalist and editor, with 10 years of experience in developing high-quality content for national and international publications.

With an academic background in both science and communications, she specialises in medical and science writing. Charlotte is passionate about creating engaging, evidence-based content that equips the community with important information on issues around healthcare, medicine and research.

Over the years, she has partnered with organisations including the Medical Journal of Australia, Cancer Council NSW, Bupa, the Australasian Medical Publishing Company, Dementia Australia, MDA National, pharmaceutical companies, and state and federal government agencies, to produce high-impact news and clinical content  for different audiences.