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This article contains references to suicidal thoughts and self-harm.
Vee Wilson says getting autism diagnoses for themselves and their two children was “game-changing” — but lengthy waits for assessments and exorbitant costs meant their family’s wellbeing took a hit.
Wilson’s son is now 21. His Western Australia-based parents first started to question whether he might be autistic when he was five, but it would take until he was 13 to get a formal diagnosis.
Even though his parents insisted with the GP their son might be neurodivergent, their concerns were dismissed and the process stalled in primary school.
Lacking a framework to understand his neurodiversity and struggling with transitions and typical tasks at school, Wilson’s son started to believe his “brain was broken”.
“Every day that children are not identified and supported is actually just another day of new trauma, because it’s another day where my child thought he was broken,” Wilson said.
Thousands in costs
In years seven and eight their son was struggling with high school and said he “needed to know whether I am autistic or if I just suck at everything”.
The family could now afford to pay for a series of appointments with a paediatrician, a psychologist, and a psychiatrist, which Wilson estimates cost at least $6,000 and resulted in autism and ADHD diagnoses.
“By the time he was 13, we were able to do that, but we couldn’t have done it when he was five, which is when he needed it,” Wilson said.
Wilson’s daughter is now 24 and was diagnosed with autism when she was 19, following a misdiagnosis of borderline personality disorder and four months spent in a psychiatric ward in 2020.
“She’d spent all her life as the older sister thinking she had to be the easy one. She just tried to go along with everyone and do everything that everyone wanted, and she internalised all that, and it just ended up in massive self-harm for her and the risk of suicide.
“Once she stopped masking and just went, ‘no, I’m going to be myself’, she’s been able to find who she actually is,” Wilson said.
‘Life-changing’ diagnoses
Getting the confirmation of ADHD and autism diagnoses was “life-changing” for both children, Wilson said.
Their son “now rules the world” and has completed high school and built a happy social life and their daughter’s confidence has blossomed.
Wilson said they saw a health professional for their own mental health who told them to choose between getting an autism assessment or an ADHD assessment, both with a fee of $2,500.
They opted for the ADHD test first, even though they suspected they had both, and said the subsequent diagnosis and medication “felt like installing a Formula 1 engine” in their brain.
“I was suppressing who I was and I was failing in every area of my life trying to communicate and act the way that everyone else did.
“And then I learned that I was ADHD and autistic, and then 2020 just tore away all the masking because I didn’t have time for it. I just reset and went: ‘I’m just going to be me’.”
Push to make ADHD and autism assessments free
The Australian Greens would add ADHD and autism assessments to Medicare, making them effectively free for patients, under a policy announced this week.
Currently, the assessments are not covered by the scheme and cost thousands.
Wilson said free assessments could mean the difference between: “our kids growing up happy and authentic or miserable”.
“Knowing who I am and how my brain works changed every part of my life, and that’s me as an adult. Imagine if we could do that for our little kids, if we could just let them grow up, honestly, who they are — we’d have neurosparkly people changing the world,” Wilson said.
“I think it’s a game changer — I think you’ll change people’s lives and therefore, ironically enough, save money for the government.”
Under the plan, nurse practitioners or general practitioners could bill ADHD and autism assessments as well as paediatricians, psychiatrists and psychologists.
The plan would cost $181 million, according to costings from the parliamentary budget office.
Greens disability spokesperson said neurodivergent people have been “left behind in this country for far too long”.
“Access to a formal ADHD or autism diagnosis unlocks support, but it currently comes at a hefty price tag. Nobody should have to pay thousands of dollars just to begin the conversation, especially when we know this community is likely already struggling with a lack of support,” he said in a statement.
‘Everything got really hard’
Sydneysider Clare Vanda is now in her 40s and suspected since she was a young child that she had ADHD.
“It was probably pretty glaringly obvious for anyone who paid attention to me, and I got to the point that I was like, the wheels have fallen off,” she said.
“All of my previous coping mechanisms could no longer function. So everything just got really, really hard.”
Two of her children had been diagnosed with the condition and she thought the process of seeking out an ADHD assessment would be straightforward, but it was anything but.
After getting a GP referral and nearly a year of ringing around psychiatrists who would accept the referral, Vanda finally landed an appointment with a psychiatrist for an assessment, in four months’ time.
“He spoke at me for quite some time and basically told me that I was just a busy mother who had too many demands on my time, even though I brought my school reports that all said: ‘Clare would be a great student if she could pay attention’.
“So that was pretty horrible and I left that appointment because he wanted me to do psychometric testing that would cost me about $2,500, and he wanted me to do that every six months to see if the treatment was working,” she said.
Rather than the ADHD medication she had been hoping to be prescribed, after doing other testing that found she did have ADHD, Vanda was prescribed an antidepressant that helps you lose weight.
“I floated out of there in a puff of rage,” she said.
Vanda said she vented to her friends about how angry she was and they told her about a telehealth clinic where she was finally able to get the care she sought, and a prescription.
“I think more than just being able to take control of my life again because my brain started functioning, I would say it’s a validation of a life of people telling me I’m stupid and lazy. It was pretty obvious that I’ve always had this handicap,” she said.
Vanda said many of her peers are getting late-in-life ADHD diagnoses because a dip in oestrogen levels during perimenopause is exposing the condition they’ve always had.
She said she was lucky to have been able to afford her appointments, and psychiatrist follow-ups every three months, but the process urgently needs to be streamlined
“It’s such a huge expense and a time expense because the process at the moment is so difficult that you’re asking people who can’t executive function to go and do huge mammoth executive functioning tasks to get an appointment,” she said.
“It’s wasting a lot of energy and time for a lot of people and the system doesn’t need to be as broken as it is.
There are currently no regulations around the cost of autism and ADHD assessments, according to the Greens.
In 2023 the ADHD Foundation advised a Senate inquiry it was aware of some professionals charging up to $5,000 for ADHD assessments.
The Australian Autism Alliance in 2022 revealed details of a survey it conducted in which 40 per cent of respondents reported paying over $1,000 for an autism assessment, with out-of-pocket costs reaching as high as $3,000.
Royal Australian and New Zealand College of Psychiatrists president Elizabeth Moore said it wouldn’t be possible to transform ADHD and autism care in Australia without expanding the psychiatric workforce.
“We welcome the Australian Greens’ announcement to include ADHD and autism assessments under Medicare, recognising how common these conditions are and the significant impact they have on people’s everyday life,” Moore told The Australian newspaper.
“However, while affordability is key, access remains a critical issue. Early identification and timely treatment for the two conditions can change lives, but Australia faces a critical and chronic shortage of psychiatrists who specialise in diagnosing and prescribing for ADHD and autism, leaving many without specialist support to manage the conditions.”
Readers seeking crisis support can contact Lifeline on 13 11 14, the Suicide Call Back Service on 1300 659 467 and Kids Helpline on 1800 55 1800 (for young people aged up to 25). More information and support with mental health is available at and on 1300 22 4636.
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