Autism: full confusion spectrum

Around the world right now ­researchers are beginning to wonder whether the concept of an ­autism spectrum is a mistake.

The “thought experiment” was floated by renowned developmental psychologist Simon Baron-Cohen ahead of a global ­research conference on autism in The Netherlands last month.

What if, he proposed, intro­ducing the spectrum of disorders under one umbrella in the latest diagnosis bible was a well-­intentioned but ultimately misguided move?

The very idea, contained in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, represents a herculean attempt at consistency while essentially putting a range of behaviours and functional abilities into the odds-and-ends drawer in lieu of a more definitive category.

The spectrum is not itself hallowed science but the latest twist and turn in the tale of a condition that has long eluded precision.

Autism is real, for the record. Sometimes it is caused by mutated genes but in many cases its onset is unexplained. It is diagnosed by pediatricians or specialists based on behavioural indicators.

Autistic people tend to have hypersens­itivity to stimuli such as noise and tastes or smells. It is characterised, too, by repetitive movements — known as “stimming” — and an unusual level of focus. It is associated with cognitive impairments and intellectual disability, though not always. The brain itself appears to ­interpret the world in a unique way.

“My thought process is very ­different to many other people,” says Katharine Annear, the chair­woman of the Autistic Self Advocacy Network. “I think a lot in patterns. I see patterns in the environment and in speech.

“When I am in an open-plan ­office, I hear everything and I cannot block it out. It can be very useful but also very difficult because it is always there, your brain is constantly filing things away.

“I have strong smell and taste and texture sensory overload. I have a fairly specific order in the way I eat things and how I do my shopping. So while you might say, ‘Oh, there’s Katharine with two degrees and a job’, there are lots of elements of my life that are ruled by these things, and that can be difficult.”

If scientists have failed to understand the condition, government agencies have made the same error with an important ­multiplication factor: they thought they knew what they were dealing with.


Perhaps this explains why managers at the National Disability Insurance Agency, which runs the $22 billion national insurance scheme still in transition, have so mishandled how autism fits into the broader picture of disability.

Under questioning in Senate estimates yesterday, chief executive Rob De Luca confirmed that the agency is working through ­recommendations from a Productivity Commission report into the scheme, one of which relates to whether autism levels two and three belong on a list of conditions that gain automatic entry to the NDIS.

Simply put, the worldwide diag­nosis manual splits autism into three levels, one being the lowest and three being someone who requires “very substantial support”. In the middle, people with level two still require “substantial support” in general but ­actual levels of disability vary wildly even in the same band.

The NDIA plan to remove level two, which did not have sign-off from any of the deputy chief executives at the agency, was mistakenly revealed when a staff member uploaded a document to the scheme website that removed the middle autism category from the catalogue, known as List A.

There will be people with level two autism who qualify for the NDIS, indeed many have, but equally the agency conceded there are some people currently receiving support who “would not otherwise be eligible” were it not for the assumptions in List A.

De Luca said yesterday he “could not guarantee” that autism level two would remain on that list.

The quick statistics are useful here: autism represents 29 per cent of all 160,000 people in the NDIS but it is even more prevalent among children, who make up ­almost 50 per cent of the total number of participants.

The agency has allocated ­almost $600,000 between October last year and November this year to the Co-operative Research Centre for Living with Autism to further study whether autism “subtypes” should be introduced and tied to “functional assessments” for entry to the scheme.

Although he cannot comment on that work, Autism CRC chief research officer Andrew Whitehouse is one of the foremost ­experts on the condition in the country and is familiar with the way it has evolved, at least in perception, since it first appeared as a distinct condition in 1980.

“That first inclusion really only described people who were clearly affected but it prompted a huge amount of research that found the behaviours used to diagnose ­autism can be there even when there is no intellectual disability or language impairment,” Whitehouse says.

“So when the DSM-IV came around in 1994, that was really the tipping point because that ­included all these other conditions such as Asperger’s syndrome, ­autistic disorder and pervasive ­development disorder — not otherwise specified, which is a frighteningly broad term.”

The thinking changed again in 2013 when the fifth edition came out and experts decided there was “no validity in differentiating the conditions”, so they were collapsed back under one umbrella.

As if to underscore the unpredictability of it all, the three levels of autism were added to the ­umbrella to provide some room for movement, but Whitehouse says they ought to be nothing more than a “shorthand descriptor” for clinicians. “They were never designed to be used, and nor should they be used, to apportion support for people with autism.

“The spectrum notion is the best that we have now but it still fails people. The idea that maybe it should be wound back is a thought experiment but it might be a way to progress. Really, we are still in the dark.”

Jarad McLoughlin, 33, was ­diagnosed with autism when he was five and is incensed at the idea of the spectrum being dismantled.

“No way! We cannot go backward in asserting our identity and our autonomy,” he says.

Not surprisingly, the autistic community has a range of views on this. McLoughlin was diagnosed under an old system — there were no “levels” when he went through the process.

“It wasn’t until I was eight or nine that I knew I was different to the way they (other kids) functioned. For example, when someone cries, they use their voice and their eyes have tears and there are these other body ticks and little spasms that they use to relate, in joy or sadness. For me, when I get stressed or overenthusiastic, I stim a lot, I use my body reflexively.”

The problem with the view of autism among those who have not experienced it, one disability advocate says, is that the community thinks it just means Rain Man or, at the other end of the spectrum, a kid with bad behaviour.

“I know level-one autistics who have had to be held down in hospital because they’ve freaked out about something,” she says.

In essence, clean categories have smothered the astonishing complexity of the condition. Whitehouse says that even within ­diagnosis levels, the range of disability is wild and unpredictable, and what is one clinician’s assessment of a “level” worth anyway?

Alba May Macdonald, 3, was diagnosed with autism spectrum disorder level two a day before her second birthday, and her mother, Emma, says without NDIS funding her young daughter “wouldn’t be where she is today”.

“We simply couldn’t afford the intensity of therapy required for Alba to live her best life,” Mac­donald says. “The idea this funding may be taken away from us is terrifying. No parent should have to watch their child regress or not ­become as independent as they could be, knowing the very thing that would help their child is financially out of reach.”

She says Alba, who has social communication deficits, is verbally delayed and has gross motor and fine motor skill delays, has progressed in “leaps and bounds” because of her therapy, which involves the help of an occupational therapist, speech therapist and pediatrician.

“Her pediatrician has said she’ll be the face of early intervention due to the dramatic progress she has made. The therapists have been ­incredible, both in helping Alba but also helping us as a family to understand such a complex disorder,” she says.

The Macdonalds, who live in Sydney’s south, say­ Alba’s present therapy program costs the family about $1500 a month.

Although Macdonald says she knows the NDIS is “new and going through its teething stage”, she ­describes the system as “pretty poor. There’s a real issue with how the NDIS funding is allocated. I’m worried how cuts to disability services will not only ­affect us but also families who are less financially well off than us.”

There isn’t up-to-date evidence about how often autism is diagnosed in Australia but the longstanding assumption has been that about 1 per cent of people living here have the condition. New ­research out of Victoria, however, suggests the rate is closer to 2 per cent, or double the old estimate.

It relies on longitudinal data but only uses parent or teacher-­reported diagnoses, not those verified by a clinician. Still, the results are powerful.

“Previous research has suggested that increased ASD prevalence may be due to the identification of cases with milder impairment,” the study says.

“The increase in ASD prevalence has significant economic ­implications which have been highlighted by recent reports from other high-income countries such as the United Kingdom and the USA. The recent UK report states that it is crucial to ­accurately identify children so that they can access evidence-based early interventions. However, there are also significant economic and ­social costs if children are allo­cated services based on a diagnosis without consideration of their ­severity level or specific needs.”

This is something that has long concerned Whitehouse.

“The problem with the heavy emphasis on diagnosis and severity levels is that it focuses the ­conversation on ‘what’ an indi­vidual is, rather than ‘who’ they are,” he says.

“It is only by individualised ­assessment that explore the strengths and challenges of each person that we can start to truly understand this individual and family. Until we make this shift as a community, we will continue to fail families.”

Katharine Annear says part of the problem experienced by government agencies like the NDIS is that they don’t quite know what they are looking at when presented with an autistic person.

Typically, she says, an assoc­iated cognitive impairment has compromised a person’s ability for rational decision-making.

“There are people who are great at articulating themselves but they might live in houses that overwhelm them because they have let things pile up, or they just don’t do the day-to-day things like pay bills on time,” she says.

“There is a severe executive function deficit. Having those supports in place, just little things, can really help people like that thrive.”

There is a celebration, too, in the diversity of the autistic brain.

“The idea of neurodiversity is not about being anti-treatment or anti-neurotypical, it’s about ­helping a person to be the best ­autistic person they can be,” ­Annear says. “Don’t you want to be unique? To be just like everyone else, that sounds like a bit of a sad life, ­really.”

Additional reporting: Olivia Caisley