Are we getting autism diagnosis right?

Making an autism diagnosis can be a long process of putting all the pieces together. Source: Getty Images

What’s the impact of an autism diagnosis on the individual, the family, and the system?

Australia has seen a 42% increase in people being diagnosed with autism spectrum disorder since 2012.

This week on Insight, guest host Sarah Abo speaks with doctors about why they think there has been such a huge increase, and asks families and adults with autism what it’s like actually getting that diagnosis.

Getting answers

Cain Noble-Davies, 22, was just seven years old when he was diagnosed with autism, but he remembers it like it was yesterday.

“Being told right there that there is something that objectively makes you different from most other people is pretty hard for a kid,” he says.

But getting the autism answer young helped Cain understand himself. 

"Right now, honestly, I'm perfectly comfortable with the fact that I have autism. I have gone past the point where it's something different or even something wrong. I just see it as a different way of looking at the world, and that's really all it is."

I have gone past the point where it's something different or even something wrong. I just see it as a different way of looking at the world.

The initial impact of an autism diagnosis is also felt by parents.

For some, it’s a welcome answer to difficult behaviour or even aggression from their child in their early years. For others, it’s a devastating prospect that their child may not be like other children, and their doctors don’t really know why.

Josephine Akel’s five-year-old son was recently diagnosed with autism, and she questioned if it was her own fault.

“I thought I had done something wrong, either the way I’ve raised him … or my health. I did feel guilt that I had done something,” she says.

"I was very emotional."

Josephine's family also grappled with her son's diagnosis. She says her husband didn't want to believe it, and their extended families won't speak about his autism.

"The reason I'm here is to sort of get that out," she tells Sarah.

The pathway to support

A diagnosis of autism before the age of six opens up access to funding through the Helping Children With Autism package, which parents can put towards life-changing services such as occupational therapy and psychology - up until their child turns seven.

But similar assistance packages don't exist for other developmental or behavioural disorders. 

Experts have suggested this may be one reason for the rising rates of autism diagnosis in Australia.

Paediatrician Dr Michael McDowell says the current disability funding system is unfair, and does not recognise other developmental problems which children suffer with and desperately need funding for.

He and other experts tell Insight that for some parents, an autism diagnosis is the only way to get much needed funding for their child's needs - and some parents go to doctors seeking that specific diagnosis.

"Parents just love their kids, and want to help their kids, and to some extent it gives them an explanation … but it's more than that, it's a pathway," Dr McDowell says.

Child and adolescent psychologist Dr Andrew Whitehouse says that if a child has some traits but isn't necessarily autistic, doctors can feel compelled to give a diagnosis to a struggling family in need of support.

"Have you ever been tempted to diagnose a child with autism when it's not necessarily the case?" Sarah Abo asks Dr Andrew Whitehouse on this week's episode.

"I think clinicians that say otherwise are probably not being too straight with you," he replies.

"Parents just love their kids, and want to help their kids, and to some extent it gives them an explanation … but it's more than that, it's a pathway."

Peta Hanney’s daughter has a very rare genetic disorder, which results in symptoms very similar to autistic traits. But her illness is so rare, it's not recognised under the current funding system for disability.

She was told the only way she could get government assistance for her daughter’s developmental problems was by getting an autism diagnosis.

“It was just a ticket for us … we'd already been through five years of keeping this child alive, a piece of paper that was going to help her at school was pretty much all it was.

Who's missing out? 

After spending months or years in search of answers and support, some people can still come away empty handed. 

Miranda Grealy tells Insight her son has been diagnosed with "DAMP - Deficits in Attention, Motor Skills and Perception, ADHD, ODD, dyspraxia and low muscle tone."

"We get no sort of funding of any description, because the diagnosis isn't the right diagnosis to have."

He was disruptive and physical with other children, and was eventually turned away from their day care centre. Miranda says her daughter is even more difficult to handle - while she enjoys the structure and routine of school, "by the time she gets home she's a mess ... we have an absolute nightmare with her yelling and screaming." 

But without a doctor willing to sign off on an autism diagnosis, the family is unable to access support.

"We get no sort of funding of any description, because the diagnosis isn't the 'right' diagnosis to have," Miranda says. 

Putting the pieces together

Insight also hears from adults with autism about navigating jobs and relationships with the lifelong disorder.

People with autism face ongoing challenges, and many families around Australia are desperate for much-needed support. 

With the roll-out of the NDIS, which will replace the Helping Children With Autism package, Insight asks: What help is on offer for people with autism, and will the system keep up?

This week, Insight explores how autism is diagnosed, and asks what that diagnosis means. | Diagnosing Autism - Tuesday 29 May, 8.30pm SBS

Source Insight