Autism activism masks uncomfortable truths

Debate over the soaring rate of autism often misses the most fundamental issue

---

 

Debate over the soaring rate of autism often misses the most fundamental issue

After a long history in the shadows, autism has emerged as the 21st century epidemic with a compelling human rights angle and no quick fix.

In line with soaring diagnosis rates around the globe, Australian figures for autism spectrum disorder (ASD) doubled in the six years to 2009, doubled again in the three years to 2012, and are now estimated at 230,000, or 1% of the population.

But this is also the era of a rising autism rights movement, with activists pushing back against the notion that ‘neuro-diverse’ individuals need to be taught to conform and hide tell-tale behaviours.

“We are living at a very exciting time – a time of great hope for autistic people and their families,” US science writer Steve Silberman told a World Autism Day event at the UN in New York earlier this month.

“Society is on the brink of a major transformation in its understanding of autism and other developmental disabilities, and everyone on the leading edge of this transformation … is playing a crucial role at this long-awaited turning point in history.”

In his keynote speech, Silberman deplored the fact that the US had invested hundreds of millions of dollars hunting for possible environmental and genetic links to autism but still did not have accurate figures on ASD citizens.

But he said he was encouraged to see a sense of urgency among governments about the importance of adopting policies to promote inclusion of people with all forms of disability.

Silberman’s 2015 prize-winning book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, argues against defining people by their developmental disabilities instead of their capabilities.

It’s a message that resonates.

“Over the past two decades a growing number of adults on the autism spectrum, myself included, have rejected this frame and called for non-autistic ‘neurotypicals’ to respect and accommodate ‘neurodiversity’,” journalist Dylan Mathews said in an interview with Silberman on vox.com.

“We believe that autism is a natural, and in many ways desirable, variation in how people think, not a great evil to be stamped out.”

Bob Buckley, convenor of the A4 advocacy group in Australia, appreciates Silberman’s talent for stirring things up but is concerned that the spotlight on high-functioning neuro-diverse people, who are not necessarily autistic, hides some uncomfortable truths.

“What does being autistic mean? That’s often forgotten about in this debate,” he says.

“Much of the community and especially politicians and bureaucrats think that it is mostly mild cases.

“It is not. Fully 75% of people who put their hand up for autism in the ABS data have severe and profound disability. That has remained true even though the figures have doubled and doubled again.”

Buckley, a computational genomic specialist at ANU’s John Curtin Medical School, is the father of a severely autistic son who he says was denied a diagnosis at age four, even though he evinced every classic feature of the condition.

He rubbishes the idea, which has currency among some government officials, that the jump in ASD diagnoses is fuelled by parents pressuring doctors to tap funding under the commonwealth’s Helping Children with Autism package adopted in 2006.

Rather, he says it reflects a common condition that was massively under-diagnosed in the past and remains massively under-diagnosed in the adult population.

He remains concerned about a lack of meaningful early-childhood intervention and a shortage of trained professional therapists. Only 30% of ASD children are identified before the age of six, when the intervention funding cuts out, he says.

The scale of the task is clear from the early-intervention trials of the National Disability Insurance Scheme in NSW and South Australia, both of which were swamped with applications in another sign of pent-up need.

Autism and related disorders account for about half of the children accepted in each of the trials, as distinct from cases of developmental delay. Curiously, the trials don’t demand a clinical diagnosis.

Professor Andrew Whitehouse, a child development expert at the University of Western Australia, agrees earlier diagnosis is critical and frontline clinicians such as GPs will be asked to play a role.

“The average age of diagnosis in Australia is four and a half. I know we can identify autism in children at a younger age. At about two years, we can expect experienced clinicians with proper training to detect signs.

“So we are not doing the best that we can,” Professor Whitehouse says.

A key task is to rid the sector of quackery that wastes the resources of vulnerable families, ranging from homeopathy to bowel bleaching.

“We know there’s a huge problem in Australia with the use of complementary and alternative medicine for autism. There is no way new approaches would be applied for diabetes without evidence to back them up,” Professor Whitehouse says.

“I think that’s a rights issue in itself.”

The NDIS rollout is seen as an opportunity to adopt consistent standards for the diagnosis of autism across the states, which will presumably smooth out variations in prevalence rates.

Best-practice interventions will see children undergoing therapies for 20 to 25 hours per week for up to two years, said to cost about $50,000 a year per child, roughly on par with the cost of a special school.

However, the scheme makes much of ‘family-centred’ care, suggesting it won’t necessarily involve professional therapy.

Dr Tom Tutton, national manager practice at Aspect, Australia’s largest autism service provider and school operator, says intensive early intervention has the strongest supporting evidence, but success is far from universal.

“You see a lot of kids thrive, but I’ve seen others (later) regress.

“The reason there is such a focus on early intervention is that when they crunch the numbers they show that an investment early does save money by reducing support needs as time goes on.”

British-trained Dr Tutton says the concept of helping families manage some level of autism support is “absolutely solid”, but the work goes beyond childhood.

Aspect, soon to open its eighth school, to be based in Adelaide with a program to integrate ASD children into mainstream education, has run an awareness campaign called A Different Brilliant.

“One of the featured people was a guy who struggles to communicate and has high support needs, but his visual and spatial recognition skills are off the charts,” Dr Tutton says.