There is a moment, after a long meeting, when an AuDHD person closes the laptop, walks to a quiet room, and simply stops. The eye contact, the steady voice, the right words in the right order — all of it cost something. It’s not visible to the person on the other side of the camera. It’s barely visible to the people in the same house. But it is the central fact of an AuDHD life. The version of you that an assessor sees is not the version of you that has to live the rest of the day.
Last Wednesday, that quiet truth ran headfirst into the biggest reshape of the National Disability Insurance Scheme since it began.
On 22 April 2026, Minister for Health, Disability and Ageing Mark Butler stood at the National Press Club and announced that the way Australians qualify for the NDIS is about to change at its foundations. Diagnosis-based “access lists” will be removed. A diagnosis of autism, or any other condition, will no longer be enough on its own to open the door. From January 2028, eligibility will be based on a person’s functional capacity — how much their disability affects daily life — and decided through a new, standardised assessment tool. A Technical Advisory Group will design the thresholds, with its work due by the end of 2026. Participant numbers are forecast to fall from roughly 760,000 to 600,000 by the end of the decade, with around 160,000 people expected to be moved out of the Scheme.
For the estimated 650,000 AuDHD Australians — those of us with co-occurring autism and ADHD, a combination that affects between 50 and 70 per cent of autistic people — this is not just another policy adjustment. It is a reset of the very gate we have spent a decade learning to open.
The Government’s framing is straightforward. As Butler argued in his speech, the original intent of the Scheme was to support people whose disability significantly reduces what they can do day to day, and the access lists became a blunt proxy that has not aged well. As autism and ADHD diagnoses have risen sharply — researchers at the University of Western Australia have shown that the NDIS itself drove a substantial increase in autism diagnoses by lowering the clinical threshold needed to access support — the diagnostic door has come to do work it was never designed to do. A more functional, less label-driven approach, supporters argue, is fairer in principle and more sustainable in practice.
That is the situation. Here is the complication.
A functional capacity assessment is, by design, a snapshot. It asks what you can do, in this room, with this assessor, on this day. It struggles, badly, with the lived reality of being autistic, of having ADHD, and especially of being both. Reframing Autism, the autistic-led peak body, responded to the announcement by warning that any new framework “must be built with an explicit understanding of Autistic masking, sensory needs, and the episodic nature of some Autistic support requirements, and must not penalise people for appearing capable.” Autism SA acknowledged the deep concern and uncertainty rippling through the autistic community. Nicole Rogerson, CEO of Autism Awareness Australia, flagged what she called the ambiguous nature of what “functional capacity” will actually mean in practice.
The community concern is not abstract. The Conversation and several Australian outlets have already published the most concrete worked example circulating in the sector this week: under the new model, a child who today might access early intervention with a Level 1 autism diagnosis may need to demonstrate needs more consistent with Level 3 autism to qualify. The bar is not just being shifted. For many AuDHD children and adults, it is being moved out of reach.
To understand why this lands so hard on the AuDHD cohort specifically, you have to understand three things about how AuDHD presents.
The first is masking. Decades of international and Australian research, including 2026 work tracking cortisol patterns in autistic adults who camouflage, has confirmed what AuDHD people have always reported: appearing fine in a 90-minute appointment is not free. It is paid for in exhaustion, shutdown, sensory overload and burnout in the hours and days after the assessment. The AuDHD adult who can articulate her struggles in beautiful, organised sentences is often precisely the adult who collapses on the bathroom floor that evening. A standardised tool that rewards composure will systematically under-measure the people who have learned to perform it.
The second is variability. AuDHD support needs are not a fixed line. They oscillate with sleep, hormonal cycles, sensory load, life stage, demand, and the presence or absence of other conditions like hypermobility, dysautonomia, anxiety, or trauma. A person can pour their own coffee on Monday and be unable to leave the bedroom on Thursday. International literature now describes this as the episodic nature of autistic and ADHD functional needs. A single-day assessment, however well-designed, cannot capture an episodic disability without an explicit framework for variability — and so far, the Government has not described one.
The third is the co-occurrence problem. ADHD has only rarely qualified for the NDIS in its own right. Adult autism with co-occurring ADHD already faces a higher bar than autism alone, because the substantially reduced functional capacity test was never written with dual neurotype profiles in mind. AuDHD adults are routinely told, in 2026, that they sit in a gap: too disabled for mainstream services, not disabled enough for the Scheme. Allied Health Professions Australia has joined autistic peak bodies in urging caution about a tool that risks deepening that gap rather than closing it.
There is also the language problem. The phrase “high functioning,” which Butler did not use but which has become shorthand in much of the surrounding commentary, has been criticised for years by autistic researchers and clinicians, including Reframing Autism’s Dr Melanie Heyworth, as scientifically inaccurate and clinically harmful. It conflates appearing capable with being supported. Most AuDHD Australians who are described as “high functioning” are in fact unsupported, unmedicated, undiagnosed for half their lives, and often one bad week away from burnout, job loss or suicidal crisis. The new test must not encode that misunderstanding into a national algorithm.
So what is the resolution?
It is not, as some commentary has framed it, to defend the status quo. The current Scheme is failing too many AuDHD Australians as well — it leaves most adult ADHD outside the door entirely, makes adult autism access a postcode lottery, and offers almost no integrated AuDHD pathway at all. Reform is not the enemy. Bad reform is the enemy.
What good reform would look like, on the evidence we now have, is fairly clear. The Technical Advisory Group, due to report by the end of 2026, must include autistic and AuDHD adults — not only as consultees but as designers. The functional capacity tool must explicitly account for masking, episodic need and the cumulative load of co-occurring conditions, and it must measure across multiple settings and time points rather than a single appointment. Foundational supports outside the Scheme — the much-promised wraparound system that is meant to catch the 160,000 — must actually exist on 1 January 2028, not be promised for some later year. And the parallel reforms that AuDHD Australians have been waiting on for years — a Medicare item number for integrated AuDHD assessment, GP-initiated adult ADHD diagnosis in every state, school-based accommodations under the Disability Standards for Education, and workplace neuroinclusion under the Disability Discrimination Act — need to be funded and resourced as the other doors the Government keeps promising to build.
For AuDHD individuals and families, the practical window is short. There are roughly 20 months between now and the new eligibility regime. If you have been putting off a formal autism or ADHD assessment, or a functional capacity report, the next 20 months are when those documents will carry the most weight. If your child is currently on the early intervention pathway, ask your provider for written documentation of baseline functional impact across home, school, social and self-care domains. If you are an adult on the Scheme, request a recent functional capacity assessment that captures your worst weeks, not your best hours. And when the Technical Advisory Group opens public consultation later this year, show up — written submissions from AuDHD Australians describing real days, real shutdowns, real masking costs and real episodic patterns will be the single most influential evidence the panel sees.
There is a quiet line in the Reframing Autism response that deserves the last word. “Not funding support does not mean support needs go away.” Cuts to the Scheme will not delete AuDHD lives. They will move the cost into health systems, mental health systems, the workforce, the family home, and — too often — the coroner’s report.
A good hour is not a good life. The next twenty months are when Australia decides whether its national disability scheme can finally tell the difference.
Sources
- Minister Butler speech at the National Press Club, 22 April 2026 — Department of Health, Disability and Ageing
- NDIS eligibility will be based on ‘functional capacity’, not diagnostic labels. But what does that mean? — The Conversation
- Reframing Autism Response to Minister Butler’s National Press Club Address
- Autism SA Media Statement on NDIS Reform
- NDIS changes announced: what you need to know — Autism Awareness Australia
- NDIS REFORM: AHPA’s response to Minister Butler’s National Press Club Address — Allied Health Professions Australia
- Autism diagnoses are up, largely fuelled by NDIS. What happens next isn’t clear — University of Western Australia
- Breaking: Minister Butler announces major Scheme re-design — Team DSC
- Updates from the NDIS following announcements by Mark Butler MP — Physical Disability Australia
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