Celebrate, not penalise, early autism diagnosis

9 minute read

Early intervention provides hope for an easier transition to adulthood and the chance to live their best lives. Shouldn’t we be embracing it?

Another week goes by and the federal government continues to mull over the NDIS review report from academic Professor Bruce Bonyhady and former bureaucrat Lisa Paul.

NDIS Minister Bill Shorten has said repeatedly that he won’t be releasing any information publicly about the report he received in October until after a national cabinet meeting next month.

So while the talks are officially happening behind closed doors, speculation, leaks – whatever you want to call them – are keeping Australia’s media busy. Not to mention the hundreds of thousands of Australians whose lives have been changed by the scheme, who are wondering what the NDIS will look like for them by Christmas.

This week the national headlines shouted that the federal government planned to “cut autism funding” in a bid to rein in a “ballooning” NDIS budget.

It started on Sunday on the front page of my local in Sydney, with a report saying the government planned to do this by “raising the bar for children with autism to gain access to the scheme”.

This followed a report released last week in which ANU academics found a link between the NDIS and a significant rise in autism diagnoses over the past decade. The academics reported the increase was higher than Canada, the US and the UK, and they concluded the NDIS was “the key factor” in the difference.

The next day 2GB’s Ben Fordham managed to get the NDIS minister on the line for a “quick word” about autism and the NDIS.

“We have been saying for some time that if we’re going to rein in the cost of the National Disability Insurance Scheme, then we’ve got to do something about all of these people being diagnosed with autism,” said Mr Fordham.

“The average package funded by the NDIS is about $34,000 a year. It’s set to cost taxpayers $42 billion this financial year, by the end of the decade, it’ll blow out to almost $90 billion. And look, I know that there are people with severe cases of autism, but we’ve heard from many people involved in the sector that there are others who are getting funding that maybe they could do without.”

He then jumped straight into it.

“So, you’ve decided you’re going to make a move when it comes to autism. What are you going to do?” he asked Mr Shorten.

“No, it’s not as straightforward as that. We’ve been reviewing the scheme, as you know,” the minister replied.

“The review is now in. We’re meeting with the states to talk about how we can improve the system on disability.

“It’s not so much focusing on a particular diagnosis, but we want to make sure the NDIS isn’t the only lifeboat in the ocean. What’s happening now is that if you’ve got a child who’s not taking a standard developmental journey when they’re a little kid, the only thing you have around is the NDIS.

“So, we’ve got to have a conversation with other departments and the school system and everyone else about how do we help kids who might have a delay, but it’s not so severe that they need to be on the NDIS.”

Further into the chat, and Mr Fordham trotted out this curly question.

“All right, we’ve got 266,000 people under the age of 18 on the NDIS and out of those, more than half of them are listed under the autism category. Do you see all of those people remaining in a year or two from now? Surely not,” he said.

Maybe Mr Fordham hasn’t got the memo about ASD being a lifelong disability. But anyway, Mr Shorten responded with this:

“I don’t think the NDIS should be the only scheme to provide support for kids with developmental delay. What we have to do, though, is make sure there’s other systems out there because some parents will say, pigs might fly when you say, well, your child doesn’t need to be on the NDIS, they could be getting some other help.

“So, the conversation has got to be about, one, is the help that people are getting actually reasonable and necessary? Does it deliver outcomes? Is it evidence based? And two, does the child need to have an NDIS package to get some support as they’re developing in their early years?”

You can read the full transcript here. And then there’s this transcript of Mr Shorten’s chat with ABC Radio Adelaide on the same subject. More of the same.

Two days later, writing for The Conversation, La Trobe University research fellow Nancy Sadka and colleague, psychologist Associate Professor Josephine Barbaro looked at the high number of NDIS participants with an autism diagnosis through a different lens.

They say numbers might be up but we should be celebrating this, because it means we are getting better at identification and diagnosis.

They crunched the data and say it “suggests we are not only correctly diagnosing autism as the primary disability, but we may also be reducing co-occurring disability that can significantly impact day-to-day life”.

“This functional focus was the original intention of the NDIS and the purpose Shorten and NDIS review co-chairs have said they want to return to.”


“NDIS access and funding should not be based on diagnostic levels; it must be based on individual needs. To make the fundamental shift Shorten and the NDIS review co-chairs are foreshadowing, access to the NDIS should not be deficits based,” they wrote.

“The NDIA will need to educate and train its staff in a holistic approach, focusing on what autistic people can achieve with appropriate supports in place.

“If we invest in early supports, autistic children are less likely to require as many supports as they age. This is a good thing for the financial sustainability of the NDIS, which was designed as an insurance scheme and not a welfare system.

“Australia is at the forefront of identifying autism early, consequently improving children’s and families’ quality of life. Our rates of early diagnosis should be celebrated, not demonised.”

I know a little bit about ASD and early intervention.

My son was diagnosed with ASD when he was three years old. It was 2001. There was no NDIS, no funding of any kind and services were limited to a handful of organisations. Wait times were months, sometimes years. He was the only child on the spectrum at his primary school for most of the six years he was there. It was a fight to keep him in a mainstream setting because there was never enough funding to meet his support needs. It was a fight to educate many of the educators about autism.

Public speech pathology was available about once a month but you had to wait to get it, and occupational therapy was even less available. Therapists cost at least $50 an hour and there was no point having private health insurance because you would hit the threshold in a matter of weeks. So as parents, we did the best we could with the finances we had, and whatever we could deliver ourselves we did that.

My son had a paediatrician who took wonderful care of him – but when he hit 19 and the specialist retired we were suddenly on our own. And we soon discovered there were no adult services specifically for a young man on the spectrum. Door after door was slammed in his face. He was too complex or not complex enough.

After a wait of some 12 months we finally found an appropriate specialist who could help navigate him into the NDIS. The year he turned 21 he became an NDIS participant, and while it hasn’t changed his life so far, we live in hope. But we still have to fight.

His NDIS package is far from perfect, in fact there are times when I find it so frustrating I want to scream and scream, or invite Mr Shorten to spend a week in my home.

From where I sit it looks very much to me like the system struggles with how to best help young adults on the spectrum to live their best lives. They might not need fully supported independent living and group homes might be tricky, but they need to learn to live independently with appropriate support, and they need the system to understand that ASD is a spectrum disorder, which means they are all different.

At no point do I see the NDIS as a system responsible for my son’s welfare. That’s why he has family. And as tough as life might be for him, my absolute certainty that he will find his way is unshakeable. He has already defied the specialists who suggested he probably would never speak and would need special schools and be heavily supported living his whole life.

But he needs some help that I cannot provide as his mum or even his carer. That’s why he needs the NDIS. And he is far from alone.

My heart sang when I read Ms Sadka’s and Professor Barbaro’s view that if we invest in early supports then autistic children are less likely to need as many supports as they age. Not because it will make any difference to my son, for whom adult life can be a daily struggle, but because if Mr Shorten and his cabinet get it right, others might not have to suffer as much as he has.

If early intervention provides that hope for an easier transition to adulthood and the opportunity to live their best lives with less of a struggle, then shouldn’t we be embracing it? Not to mention the financial relief it offers parents who are already doing it tough.

Like the ladies from La Trobe said so well, “our rates of early diagnosis should be celebrated, not demonised”.

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