The Australian government has announced it is seeking to establish a new standard for autism. The effort comes following concerns for the cost of the National Disability Insurance Scheme after a substantial increase in autism over the past decade.
Autism is most often identified in childhood. Parents and/or care professionals will usually identify signs of autism by the time the child is 2-3 years old. While this is a typical description, autism may be identified at later ages.
Autism is a developmental disorder where a person experiences troubles with social interaction and communication. A person with autism will show restricted and repetitive behaviour. The spectrum of autism refers to both the range characteristics and degree to which they are experienced.
According to the Australian (paywall), there are approximately 164,000 Australians living with autism which represents an 80% increase over the last 10 years. By contrast, Aspect puts the estimate even higher at 1 in 70 people or about 230,000 Australians.
The Australian describes these new rules as way to avoid ‘doctor shopping’ for a diagnosis by creating a nationwide standardised assessment.
The new rules were developed by the Cooperative Research Centre for Living with Autism with funding from the National Disability Insurance Agency. Andrew Whitehouse, Chief Research Officer of the Cooperative Research Centre for Living with Autism has noted on the Conversation that:
“The guidelines do not define what behaviours an individual must show to be diagnosed with autism. These are already presented in international manuals, such as the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-5) and the World Health Organisation’s International Classification of Diseases (ICD-11).
What the new guidelines provide is a detailed description of the information that needs to be collected during a clinical assessment and how this information can be used to inform the ongoing support of that person, including through a diagnosis of autism.
The guidelines include 70 recommendations describing the optimal process for the assessment and diagnosis of autism in Australia.”
Most importantly, Whitehouse notes:
“A diagnostic assessment is not simply about determining whether a person does or doesn’t meet criteria for autism. Of equal importance is gaining an understanding about the key strengths, challenges and needs of the person. This will inform their future clinical care and how services are delivered.
In essence, optimal clinical care is not just about asking “what” diagnosis an individual may have, but also understanding “who” they are and what’s important to their quality of life.
We know diagnosis of autism alone is not a sound basis on which to make decisions about eligibility for support services such as the NDIS and state-based health, education and social support systems.
Some people who meet the diagnostic criteria for autism will have minimal support needs, while other individuals will have significant and urgent needs for support and treatment services but will not meet diagnostic criteria for autism at the time of assessment.”
Minister for Social Services, Paul Fletcher has stated that the new rules on autism assessment will not impact those who have already been accepted into the National Disability Insurance Scheme according to the Guardian Australia. Minister Fletcher stated:
“It does not change what the NDIS does and indeed it may well be that there are people who, today, would not be diagnosed who will be diagnosed…
That will be a judgment for clinicians and medical profession and the NDIS will continue to do what it does, which is make an assessment of the impairment that somebody suffers as a result of a disability. Is it likely to be permanent and lifelong? Is it significant? What impact does it have on the functioning?”
However their remains ongoing concerns for fully funding the NDIS. This uncertainty has been furthered by the recent disclosure that the Coalition government is sacrificing support for people with disability to drive its financial agenda. In this context, there may be some scepticism that these new rules will not be used to further limit access to the NDIS and other support for people with disability.
How do you feel about the new rules? Are you comfortable with the NDIA funding research that defines medical diagnosis of disabilities in Australia? Will this help more people access support?
Let us know what you think in the comments