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Autism organisations are choosing a “glass-half-full” attitude towards the new National Autism Strategy. But its arrival — in the same month as the treatment of autistic children being removed from the NDIS — has been a cause of frustration for many.
InSight+ spoke with autism experts about the Strategy, the NDIS and where this places autistic people.
The National Autism Strategy (NAS) was announced this month, a move by the Australian Government to bring about sweeping changes for people with autism.
Some are concerned, however, that the government’s targeting of children on the NDIS will leave autistic children and families wanting.
Ms Nicole Rogerson is a leading Australian spokesperson for awareness and understanding of autism. She is the CEO and founding director of Autism Awareness Australia (AAA).
Ms Rogerson said that reactions in the autism community have been mixed.
“The Strategy was an excellent idea. Some people were cynical about it — and maybe rightfully so — but likewise some welcomed that it was a good first start,” said Ms Rogerson.
“I can’t speak on behalf of the whole autism community; I best speak on behalf of autism families. But I got a lot of eye-rolling about the Strategy,” she said.
“People couldn’t easily see that it was a good plan for how their life or their child’s life will improve,” she said.
“You’ve got to start somewhere … I have some sympathy for that view. In the media, I was trying to do glass half full, glass half empty. But man, it’s missing some things,” said Ms Rogerson.
Missing elements
“One of the big missing elements is the states,” said Ms Rogerson.
“There is no agreement between the states, so the Strategy only looks at areas that the federal government can affect in the life of an individual with autism,” said Ms Rogerson.
“Some of the things that most affect a person with autism are housing, education, health. So, the fact that the [federal government] made a strategy that wasn’t really a national strategy was a real shame,” she said.
“The other biggest miss was the lack of focus on early intervention, and how well children are managed at school,” said Ms Rogerson.
“If we don’t get that part right, we’re never going to reach any of those lofty goals that the Strategy lists.”
Ms Rogerson said that the autism community has been affected by miscalculations on the prevalence of autism.
“I’ll be honest, the tipping point for the Strategy has been political, in that the costs of the NDIS have been growing at a rate faster and higher than expected. It’s commonly known that the government miscalculated the number of children that would end up in the NDIS, and how long those children would need to be in the scheme. As a result, it just got too expensive and too big,” said Ms Rogerson.
“If costs look like a runaway train, it’s bad politically because it looks like you can’t manage an important piece of social infrastructure,” she said.
Health care professionals burdened
Ms Rogerson said that the gaps in care for children will land them on the doorstep of GPs.
“I think GPs are going to be affected. Because when people are no longer receiving services for their children and their children are displaying challenges, that’s going to influence the child’s mental health, on the family’s mental health, and then just more broadly how the family’s working as a unit,” said Ms Rogerson.
“That’s going to land on the doorstep of GPs. There’s nothing obvious that a GP could recommend to a family that is going to address those issues,” she said.
“GPs have had to watch the changes with Medicare. The NDIS is no different. It’s a public infrastructure behemoth, and it goes through stages. But it must exist in an environment where the Australian public remains supportive of it,” said Ms Rogerson.
“I worry that with all the headlines and Minister Shorten screaming ‘Fraud!’, people are going to lose faith in the system,” she said.
“Not only has the NDIS built an entire industry of people that work in it, but if you look at the outcome data of people with autism — if you support them the right way, to be independent — if you don’t, the costs are going to hit you later, are going to be so much bigger.”
Looking at the numbers
Recent reporting on the removal of children from the NDIS and services that supported children with developmental delays and autism, suggests that the gaps will be significant.
Mr Bob Buckley, co-convenor of the recognised disability representative organisation Autism Aspergers Advocacy Australia (A4), said that the numbers are difficult to pin down.
“At this stage, no one knows how many autistic children the NDIS will deem ineligible at entry, or as they get older,” said Mr Buckley.
“For young children, this is complicated by how the NDIS has distorted autism/ASD diagnosis in Australia: increasingly, young children are diagnosed first with developmental delay (DD, defined in Section 9 of the NDIS Act 2013) or Global Developmental Delay (GDD, described in the DSM-5-TR). There are declining ASD diagnosis numbers and rates for children 0-6 years old in the NDIS,” he said.
“Then, when it is too late for them to access NDIS for early intervention for autism/ASD, they are diagnosed autistic. Evidence that many children who were first labelled DD or GDD are autistic is from information provided by the NDIS Scheme Actuary (here and here),” said Mr Buckley.
“The problem is that autistic children become autistic adults. The DSM-5-TR tells us that ‘Only a minority of individuals with autism spectrum disorder live and work independently in adulthood,’” said Mr Buckley.
“Australian Bureau of Statistics (ABS) reports that 73% of autistic Australians have severe or profound disability (core limitations). So most autistic children who are kicked off the NDIS will come back as autistic adults needing support. Autism numbers grew 41% from 2018 to 2022 — that is 9% per year, which is enormous growth,” he said.
Mr Buckley says the following table shows NDIS participants with autism as their primary disability type from the NDIS at September 2024.
| Age (years) | Plan budget (average) | No. participants |
| 0 to 6 | $ 32,000 | 14 901 |
| 7 to 14 | $ 27,000 | 129 732 |
| 15 to 18 | $ 42,000 | 45 514 |
| 19 to 24 | $ 84,000 | 31 662 |
| 25 to 34 | $ 104,000 | 18 083 |
| 35 to 44 | $ 111,000 | 6879 |
| 45 to 54 | $ 116,000 | 3247 |
| 55 to 64 | $ 132,000 | 1361 |
| 65+ | $ 167,000 | 339 |
“These are averages, so they need careful interpretation. Suffice it to say that avoiding NDIS funding of early intervention typically increases the cost of support post-school substantially,” said Mr Buckley.
Guiding principles
Associate Professor Josephine Barbaro is a principal research fellow and neurodiversity-affirming psychologist at the Olga Tennison Autism Research Centre, La Trobe University. She’s also a director of the Australian Association of Psychologists Inc (AAPI).
Co-founder of Australia’s first early assessment clinic for autism, where she is clinic and research director, A/Prof. Barbaro also pioneered the world’s most accurate developmental surveillance tool for autism, SACS, which is used to train health care and education professionals. She also created a free autism screening mobile app for parents, ASDetect.
A/Prof. Barbaro was selected to be a member of the oversight council for the National Autism Strategy.
“The NAS is designed to promote equal inclusion of autistic people; acceptance of autistic people as different and not deficient; it is based on a neuro-affirming, human rights model. Positive change lies with society, and not solely with the individual. It acknowledges that with difference comes disability in a world not built for you. And disability is not a dirty word,” said A/Prof. Barbaro.
“One of the most important features of the Strategy is an epidemiological study to identify the prevalence of autism in Australia, set at $2.8 million over 4 years. This has never been done before in Australia. To know the scope of what the Strategy can do, we first need to know how many autistic people there are in Australia,” she said.
“One of the reasons there was a ‘blow out’ in costs for the NDIS was the severe underestimation of the prevalence of autism. Unfortunately, the blame was instead laid on unfounded statements that autism is over-diagnosed, when it is actually the other way around — it is severely underdiagnosed,” said A/Prof. Barbaro.
“There’s $12.2 million over five years for a dedicated knowledge translation body — translation of research into practice,” she said.
The tick of approval
A/Prof. Barbaro said that the NAS begins to create an autism-affirming society in several important ways.
“One of the things that we discussed with the NAS is having a similar initiative to the rainbow tick for LGBTQIA+ people, for organisations. So that we could say to support or service providers, they need to be “NAS certified”, which includes being neurodiversity affirming. Which is rare,” said A/Prof. Barbaro.
“So, from this point on, unless a service or support follows those guiding principles, it’s going to become less and less likely that they’re going to be able to continue to provide services to the autistic community,” she said.
“I want to use this Strategy as a way of holding people to account. We can now ask, ‘Do you meet the guiding principles of the Strategy? Are you neuro-affirming? Are you trauma-informed?’” said A/Prof. Barbaro.
Addressing the criticisms and limitations
“One of the first things I want to say to critiques of the Strategy is – we have already thought of these, of course, and spoken about them at length. By we, I mean the oversight council, the working groups, and the autistic community,” said A/Prof. Barbaro.
“But we obviously had to work within certain parameters. I hear comments that the Strategy is just a list, or that there’s no real action. There is already a first-year action plan, with dedicated funding,” she said.
But A/Prof. Barbaro agrees with some of the criticisms of the NDIA removing autistic children from the NDIS.
“I completely echo people’s sentiments regarding the NDIS reforms. And I think that the timing of the Strategy with the reforms is unfortunate, because the Strategy without the current issues of the NDIS reforms would be better than no Strategy at all,” she said.
“It’s a national Strategy, which is not binding on states and territories. And so, state-based issues such as education and justice — we couldn’t directly target within the strategy,” she said.
A better roll-out of foundational supports
A/Prof. Barbaro says that there’s a lot of work to go with what she’s been a part of in NDIS review panels.
“I’ve been part of forums for the NDIS review over the last three years. Their goal was to put some children through foundational supports instead of the NDIS. But there aren’t foundational supports in place yet, or a proper definition of foundational supports. There needs to be commitments from the state governments, as well,” said A/Prof. Barbaro.
“This was before I was on the oversight council. There’s been a lot of money given to early supports for autism. And the screening component was not part of that. The rationale was that it was a state-based issue. It just was illogical to me. It didn’t make sense,” she said.
“The Strategy, though, is obviously separate to foundational supports. But I echo those NDIS issues,” said A/Prof. Barbaro.
Prof. Andrew Whitehouse is Director at AAA, professor of autism research at The University of Western Australia, director of CliniKids, research strategy director of the Cooperative Research Centre for Living with Autism (Autism CRC) and a past president of the Australasian Society for Autism Research.
Prof. Whitehouse said that he’s optimistic about the future of foundational supports, but it requires further development.
“The first principle is that autistic kids require support. Sometimes those support needs will be quite major. Sometimes they’ll be less, but they need support. One of the important things that we’re seeing emerge in the disability landscape is the creation of this new system of foundational supports,” said Prof. Whitehouse.
“[There is] tremendous potential to provide greater access to supports for many autistic kids. But haven’t had a huge amount of detail yet, and it hasn’t been rolled out yet. So, I’m optimistic for the future that creating this system in which the NDIS supports individuals with quite significant support needs, and a foundational support system for children who may have lesser needs,” he said.
“Unfortunately, it’s just not necessarily in place right now.”
Autistic prevalence higher than estimated
A/Prof. Barbaro said that the data on the prevalence of autism must be correctly understood.
“The most frustrating thing is that there were incorrect figures used for the prevalence of autism for the NDIS. I think they used the autistic prevalence of 1/150 figure, from many years ago. I have published papers that show that the figure is 1/30. You’ve built a scheme and underestimated autism prevalence by at least five times,” she said.
“I’ve written about challenging those who are saying autism is over-diagnosed, and showing — with the NDIS’s own figures — that diagnosis is actually on par. We’re doing an excellent job,” said A/Prof. Barbaro.
“Kids who don’t receive much needed supports could instead end up in our mental health and our justice systems. And that’s not good for anybody: kids, families, or society. It’s also not good for the economy and for saving money in the long term,” she said.
“To save money, you need to provide supports to these kids early,” said A/Prof. Barbaro.
GPs need Medicare flexibility
A/Prof. Barbaro, who is a voluntary board member of the AAPI, said that health care professionals need better support for supporting autism.
“But what GPs are telling us is they need a dedicated Medicare item for autism. And not just for screening, but developmental checks. We’ve been advocating for that,” said A/Prof. Barbaro.
“GPs are expected to do everything in 10 minutes, and it’s unreasonable for us to expect a GP to engage in developmental surveillance for autism during a routine check for hearing or immunisations. We’ve been advocating for dedicated Medicare items for GPs, as well as for all psychologists, which sufficiently covers the time needed for screening and diagnosis, which just don’t exist,” she said.
“If you’re going to do a parental interview, developmental check, an autism-specific assessment, and a cognitive assessment, that’s upwards of $3000,” said A/Prof. Barbaro.
A/Prof. Barbaro said that her organisation has trained thousands of medical, allied health and early childhood education professionals across the world using the SACS tool.
“Definitely doctors can use it, and GPs in particular.”
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