Patchy services and a lack of national guidelines are delaying the diagnosis of autism spectrum disorder in children, leading to poorer outcomes, the AMA says.
Australia has fallen behind comparable countries in the timely diagnosis of Autism Spectrum Disorder (ASD), with the condition being picked up at a mean age of about six instead of the ideal age of two.
With rates of autism on the rise across the country, it was important to detect autism disorders early, the AMA said in its first-ever position statement on autism.
“The sooner we can identify a problem or concern, the better,” said Dr Michael Gannon, the president of the AMA. “The brain’s ability to respond and remodel itself means early intervention can make a huge difference to the outcome for children.”
In the four years prior to 2012 there was almost an 80% increase in the number of people with ASD, with a peak in the five to nine age groups, according to the ABS.
Historically, children not diagnosed with ASD before the age of six lost access to government-funded support services. This is likely to change once the NDIS is fully rolled out, as the scheme emphasises lifetime care.
Over a third of parents reported waiting more than 12 months for an ASD diagnosis, said Dr Gannon. At the root of the problem was the lack of national guidelines for diagnosis, the scarcity of child psychiatrists, and the underfunding of primary care services, he said.
“We need to fund GPs so that they have the time to dig deep and to ask parents the questions they really want to ask,” he said.
Families having to wait long periods for psychiatric appointments also delayed diagnosis. This problem was multiplied in rural and regional areas where few, if any, clinicians could make the diagnosis, said Dr Gannon. As a consequence, ASD prevalence varied across Australia, ranging from 0.30% in the ACT to 0.72% Victoria, according to the ABS.
Professor Andrew Whitehouse, head of the Developmental Disorders Research Group at Telethon Kids, told TMR that consistent guidelines would help resolve the disparity.
The National Disability Insurance Agency is currently commissioning national guidelines for July 2017, with Professor Whitehouse chairing the process.
A major theme of the guidelines would be flexibility. “The diagnostic process can’t be rigid in the face of children, who are very, very variable,” he said.
Dr Gannon said the RACGP, the Royal Australasian College of Physicians, and the Royal Australian and NZ College of Psychiatrists should also develop a diagnostic protocol. Early diagnosis of ASD gives families access to intervention services, including the Helping Children with Autism and Better Start for Children with Disability programs.
These two programs are being gradually phased into the NDIS, with participants moving across to the new scheme at different times, depending on location.
In its position statement, the AMA urged the government not to narrow the criteria for people with ASD to access the NDIS.
The NDIS trial sites had been “absolutely swamped” by families with autistic children seeking support services, said Dr Gannon, but this demand should not be used as a reason to limit access.
“[The NDIS is] meeting unmet need for children somewhere along the autism spectrum,” he said. “So the last thing we want to see is the NDIS … withdraw from funding the expert services.”
Professor Whitehouse said there was no evidence of a political push to restrict NDIS funding for autistic children and said the AMA was making a “pre-emptive strike”.
“We just need to see how the NDIS plays out before we make any judgments on that,” he said. “The NDIS hasn’t been fully rolled out just yet.”
Editorial note: Prof. Whitehouse is engaged in research funded by the Government that asked about overdiagnosis, and found the prospect of a minimal amount. That same research failed to look into under- or delayed diagnosis when there is strong evidence of decades of delayed and under-diagnosed ASD. The research objects and its methods are clearly biased. It is quite disingenuous for Prof. Whitehouse to say the AMA is making a "pre-emptive strike".