Autism is a neurodevelopmental condition characterised by behavioural differences in children, but autism diagnosis is far from straightforward.
Now, the Cooperative Research Centre for Autism Diagnosis (Autism CRC) and the National Disability Insurance Agency (NDIA) have joined forces to implement a national guideline for diagnosing Autism Spectrum Disorder.
The system will improve the highly variable and often delayed diagnoses currently delivered across different state health systems.
This initiative comes at a time when authorities such as the Australian Medical Association (AMA) have recognised autism diagnosis in Australia as an issue in urgent need of attention. Earlier this month, the AMA announced that the speed of diagnosis is of primary concern.
Over the course of the next year, Professor Andrew Whitehouse, Director of the Autism Research Team at the Telethon Kids Institute, will spearhead collaborative research efforts to establish a national guideline to be published by September 2017.
One of the primary aims of the guideline is to streamline the diagnostic process across Australia and thereby accelerate vital, early-stage diagnoses.
Tackling variability in autism diagnosis
In developing the new guideline, the Autism CRC and NDIA hope to address problems that are rooted as much in the state-run approach to the diagnostic process as they are in the nature of autism itself.
“We don’t know enough about the genetics and neuroscience of autism, so we diagnose based on behaviour,” says Whitehouse. “And the way we appraise the particular behaviours differs quite considerably across states.”
According to Whitehouse, some states may require only one medical health professional to carry out a diagnostic assessment, while others mandate that every patient be consulted by a series of interdisciplinary teams. The level of diagnostic training and tools of assessment also vary greatly across regions, and between rural and metropolitan areas.
These factors impact not only the diagnostic outcome, but also the cost and time involved in reaching a conclusion.
“The variability in how we appraise behaviour associated with autism in Australia has a major effect on the cost of an assessment and the waitlist involved,” says Whitehouse.
A recent Australian study suggested that in Australia, autism diagnosis occurs around three to four years later than recommended, with early treatment key to limiting the effects autism has on an individual’s life.
Given the lack of a standardised, transparent approach to autism diagnosis across Australia, Whitehouse believes some families feel like they have to seek out multiple opinions. Not only does that delay the diagnosis, but it also adds to the emotional and financial strain for families, says Whitehouse.
“In the end, a delay is a cost to the family, as well as the Commonwealth government.”
Working with families for families
Over the course of the next year, the research team plans to work with families, individuals on the spectrum, autism experts, doctors, and service providers to make sure that the national guideline addresses the key issues faced by families and individuals on the autism spectrum today.
Their goal is to create an environment where families and individuals on the autism spectrum of all ages feel that they can trust in the process and can expect equal procedures across the whole of Australia.
“The main focus is not just rigour, but what is feasible to administer on the ground and what is acceptable to families,” says Whitehouse.
Along with the publication itself, plans for distributing the national guideline include extensive training of doctors and medical staff, as well as awareness campaigns for families.
Accelerated access to treatment
The Autism CRC and NDIA hope that a national approach to tackling autism diagnosis will lead to a smoother and more efficient diagnostic process, accelerating access to treatment and effecting more equitable outcomes for everyone living with autism.
“The national guideline is an important way to get all children with autism off to the best start in life, so that every child is afforded equal opportunities,” says Whitehouse.
A successful implementation of the guidelines could also set an example for agencies handling other disabilities.
“With this project, we hope to demonstrate that nationally harmonised protocols in the area of childhood disability are possible, particularly through collaboration with Government agencies,” says Whitehouse.
– Iliana Grosse-Buening
Autism CRC aims to provide the national capacity to develop and deliver evidence-based outcomes through its unique collaboration with the autism community, research organisations, industry and government. Find out more here.
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