Australia’s leading expert on autism says a new model of intervention could reduce long-term disability from the disorder, by a factor of three, and help to make the ballooning National Disability Insurance Scheme more sustainable.
“The NDIS is currently relying on an outdated model of when to commence autism therapy,” said Andrew Whitehouse, head of Australia’s leading autism research team, CliniKids, based at the Telethon Kids Institute in Perth.
The disorder is a driver of the cost blowout in the scheme, which is projected to cost $59 billion a year in 2029-30. One in three participants has autism.
The NDIS typically waits for young children to be diagnosed with autism and then provides support. Early signs of autism can be identified in a baby’s behaviour in the first year of life.
Under the current approach, a period of “wait and see” follows before diagnosis around the age of three or four. But Professor Whitehouse said during this time children’s brains are developing rapidly and the opportunity to intervene and achieve the biggest possible reduction in disability is lost.
Switching to a pre-emptive model, which the UK has done, where intervention occurs as early as nine months, would allow the NDIS to return to the insurance principles upon which it was founded, he said. That is, to provide early support to reduce later disabilities.
“The ‘wait and see’ model is based on evidence from 20 years ago. Now there is conclusive evidence that preemptive intervention can lead to even greater reductions in disability, and therefore have a significant impact on the sustainability of the NDIS.”
Professor Whitehouse, who holds the University of WA’s Angela Wright Bennett chair of autism, backed by the Financial Review Rich Lister, said there has been a huge increase in the diagnosis of autism over the past 20 years, unparalleled in other neurodevelopmental conditions.
“When I started in the field, in the late 1990s, we diagnosed autism in about one in every 2000 children. Now, around one in every 100 children receives a diagnosis of autism. This has led to autism being the most prominent disability category within the NDIS.
“It is critical to ensure NDIS supports are consistent with current best evidence.”
Data from the US indicating the prevalence may be as high as one in 44, has led some Australian organisations, such as Autism Spectrum Australia, to revise its estimated prevalence rates from one in a 100 to one in 70.
“As far as we can tell, increases are driven by sociological factors, such as increased awareness, broadening diagnostic criteria and greater resourcing for diagnosis. This is simply a reflection of a greater propensity for diagnosis,” he said.
In September last year, he and his team published findings of a landmark trial showing that providing therapy when the first indicators of developmental problems are seen, can lead to larger reductions in disability.
UK adopts pre-emptive approach
The findings, published in the top paediatric journal, JAMA Pediatrics, have since led the National Health Service in the UK to adopt a ‘pre-emptive intervention’ model for autism.
Conducted at the Telethon Kids Institute, the Child and Adolescent Health Service in Perth and La Trobe University in Melbourne, the trial involved more than 100 babies showing early behavioural signs of autism.
It found early intervention led to significant reductions in the social communication difficulties associated with autism, a key criterion for a diagnosis.
“While many of the children still have developmental difficulties or differences, the developmental improvements from the therapy were so large they resulted in three times fewer diagnoses of autism at age three years,” he said.
“They are the first evidence of a pre-emptive intervention that can reduce disability to the point that children don’t meet criteria for an autism diagnosis. By supporting babies very early in life, we are ensuring that they are learning in an environment that is adapted to their unique needs from the very earliest moments of life.”
The babies were recruited at nine to 12 months, and followed to the age of three.
Of those who received the intervention, only 7 per cent met the criteria for autism, at three. This compared with 21 per cent of those who did not receive the intervention.
“We need to follow these children up to understand their longer-term support needs, however, there is good evidence that a diagnosis at three is relatively stable into later childhood.”
“The current ‘wait and see’ model puts families through the wringer trying to understand how best to support their babies.
“This new model is transformative. It is not only responsive and proactive to kids and family’s needs, it turns out to be far more effective in reducing disability barriers in their life.”