In the last week, participants of the National Disability Insurance Scheme (NDIS) were dealt a terrifying blow: the government is gearing up to "redirect" people with "mild" and "moderate" autism away from the scheme toward a new program called "Thriving Kids".
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According to Disability and NDIS Minister Mark Butler, "diverting kids" away from the NDIS is an "important element of making the scheme sustainable and returning it to its original intent".
As an autistic adult, I can't help but notice some obvious problems with this ill-defined plan.
Firstly, there's the focus on "kids" and "early intervention". The government seems to be forgetting that autism is defined as a permanent and therefore lifelong neurological condition: that is, that autistic children grow up into autistic adults.
Though it's true that around 56 per cent of NDIS participants are aged 18 or under, and many of these have a primary diagnosis of autism, it's just as important to remember the rest of the people on the scheme are adults.
On a related note, the government seems to be framing so-called "mild" and "moderate" autism as something that can be "treated".
The questions this raises are many: what is defined as "mild" or "moderate" autism, and who makes that decision? What happens to autistic kids when "early intervention" runs out? And what happens to autistic adults?
My fear is that there's a short-sighted and almost cruel logic that the government seems to be applying: support (some) autistic children for a while, then leave them and autistic adults to fend for themselves.
Of course, many of us already know what it's like to be left to fend for ourselves, and that's why our anger is so visceral.
Personally, I know the suffering caused by not getting the support I need.

I was 28 when I was diagnosed as autistic. The diagnosis was a revelation that explained so much of my lived experience, including my lifetime of suffering: my physical illnesses I now recognise as comorbid to autism, as well as my social struggles, anxiety, insomnia, and suicidal depression.
Though my diagnosis came with its share of grief, it also came with hope: with a diagnosis, maybe I could get some support?
My hopes were torn to pieces by the NDIS.
Though I was eventually accepted onto the scheme, as a so-called "high-functioning" autistic, my support needs were considered minimal, and I've been left with a plan I can't use.
The supports I need, including mental health therapy, are simply not covered by my NDIS plan.
Ironically, my plan does fund supports I don't need, like speech therapy and a support worker.
Like me, many people have NDIS plans they can't use, and many more simply don't even bother applying.
The mess of the NDIS already 'diverts' people away
The punishing, difficult process of accessing the NDIS goes some way to explaining why, despite the fact that around 4.4 million Australians have a disability, only around 740,000 of us currently access the NDIS.
So what happens to those of us who aren't supported by the NDIS? And by extension, what's the threat to autistic kids and adults being "diverted" away from the NDIS?
"Luckily", we don't have to guess. The outcomes of not providing autistic people with suitable supports has been thoroughly reported in medical literature.
Autism researchers routinely report that it is "support throughout the lifespan that can alter the rather negative outcomes of autistic people in adulthood" and improve quality of life for people with autism.
Without this support, we suffer greatly. In adulthood, a lack of support has been linked to poor physical and mental health outcomes, including suicide, which is one of the leading causes of death among autistic people.
Another Australian study of autistic people without intellectual disability found that 66 per cent of respondents reported suicidal ideation, with 35 per cent reporting suicide plans or attempts - about five times higher than the general population.
I'm one of these statistics, and so is my twin sister.
Despite having autism and multiple other disabilities, my sister has been rejected from the NDIS twice, and is now fighting for access at the Administrative Review Tribunal (ART).
During this time, in the last year alone, my sister has been admitted to hospital for suicidality twice.
Over and over, people in the disabled community have seen how problems within the NDIS can lead to a worsening in our physical and mental health.
But, importantly, we've also seen how the NDIS has changed and saved lives.
So where do we go from here?
Though I'm hopeful the Thriving Kids program will be able to further support autistic children, the program's rollout should not be a replacement for the NDIS.
Further, the government needs to realise that all people with autism - children and adults - require individualised supports suitable for each stage of life. That goes for so-called "high-functioning" autistic people like me, too.
- Elena Filipczyk is a freelance writer and a PhD candidate at Monash University.
- Support is available for those who may be distressed. Phone Lifeline 13 11 14; beyondblue 1300 224 636. Suicide call back service: 1300 659 467.
