A more equitable question of who they are, not what

The days of desperate parents doctor-shopping for autism diagnoses to receive support are numbered. That inequitable system will not be missed.

Not only does the “significant variability” between states on diagnosis requirements for autism spectrum disorder muddy the waters for an already difficult condition, but it was a disaster when funding for support across multiple systems was tied to a label.

Some autistic adults love their label, and so they should. They are proud of their neurodiversity and the particular abilities that come with it. But work commissioned by the National Disability Insurance Agency to develop a way to fund support without needing the diagnosis at all is the fairest way of working with a condition that, by its definition, is cast along an incredibly wide spectrum.

A future model will assess people based on their abilities and functional capacity, or as researcher Andrew Whitehouse says: asking who they are, not what they are. This was the original aim of the NDIS but autistic labels and levels have remained.

There are still questions no one seems to be able to answer.

Will a new emphasis on functional need result in more or less people getting support? The official line is we won’t know until we try it. That may be true, though the adage that a review should never be commissioned unless the government knows the outcome springs to mind.

It is true that NDIS bosses have been worried about the number of people with autism entering the scheme. The removal of automatic entry lists that include the two most severe levels of an autism diagnosis, for example, will ultimately lead to some people being “tested out” of the scheme.

And what will the states do with education support if functional assessments show more students require support in schools? This is tricky territory, politically, but bold ideas deserve to be heard.