Should Autistics be counted in Australia’s National Census?

 

Should Autistics be counted in Australia’s National Census?

A year ago, during the Australian Bureau of Statistics Census Review, I applied to have a question about Autism and neurodivergence added to the upcoming 2026 National Census.

I was disappointed that my submission was unsuccessful, as very little is known about the lives of older Autistics and women, migrants and poorer people on the Autism Spectrum, and this has been highlighted in the Draft National Autism Strategy. I am a member of CALD Autism research advisory groups and so I know firsthand how useful census information could be.

Support from Autistic Elders

I forgot about last year’s census review until I accepted an online speaking engagement with Reframing Autism’s Panel of Autistic Elders, which took place at RA’s Community Summit last Friday. When asked how I, as an older Autistic, advocate for others, I suddenly remembered my submission! As soon as I mentioned counting Autistics in the census, the zoom chat took off. The idea had loads of support amongst conference participants, but this has not yet materialised in census reform. It’s clear that Autistics need to be organised so that we can speak with a louder voice.

I have now decided to share my census advocacy journey through this blog, and canvas support for another push to count Autistics, and other neurodivergents, in the National Census. Given that we have missed out on being counted in the 2026 National Census, I envisage that we would need -

A 3 - 4 year campaign strategy to count Autistics in the census

This could involve:

·        hosting discussions to clarify ideas and tactics

·        creating a coalition of Autistic and other neurodivergent advocates

·        gathering support from Autistics, other neurodivergents and allies

·        making submissions to neurodivergence organisations and government ministers

·        and being ready for another push during the next ABS Census Review, possibly in early 2028

The census advocacy journey thus far

A couple of years ago, I heard about the LGBTIQ+ campaign to “count us in” the National Census. I thought this was a good idea for Autistics also, but I was unaware of what this would entail. Then last year I came across a call for migrants to hurry up and make submissions to the Census Review, before the deadline, about adding questions on languages spoken. I realised that this review was the opportunity for Autistics to be heard! With the deadline fast approaching, I rallied the support of friends in Neurodivergent Labor, and made a brief submission to “Phase 1”. This was posted online, by the ABS, and was one of only two submissions to mention Autism:

https://consult.abs.gov.au/census/2026-census-topic-consultation/consultation/published_select_respondent?show_all_questions=0&sort=submitted&order=ascending&_q__text=autism

According to this next ABS website,

https://www.abs.gov.au/statistics/research/2026-census-topic-review-phase-one-directions

only 16 Phase 1 census submissions (1.7% of the total received), related to disability and carers. Several of our submissions were grouped together as a request for a question about an additional measure of disability. From the website:

“Additional measure of disability”

“The 2021 Census collected information on people conceptually described as having a profound or severe limitation. The ABS received feedback during the first phase of consultation that there is a need to identify a broader group of people with disability. Feedback indicated that the current approach excludes a significant proportion of Australians living with disability, and collecting additional data would enhance the development and design of policies and programs targeting people with disability.

“Next steps 

“The ABS will engage with stakeholders, as needed, to explore options for question(s) and assess the feasibility of including this topic. Although the ABS is not requesting specific feedback on this topic during the public consultation, there is an option to provide additional feedback. You can provide feedback via the ABS Consultation Hub.”

I did provide additional feedback and I also attended an online ABS Census forum last August. At the forum it was clear that the CALD and LGBTIQ+ lobbies were large and well organised. The ABS meeting hosts claimed that the number of submissions did not sway them, but it was clear they trying hard to appease these larger lobby groups. Meanwhile the ABS hosts remained vague about the “Additional measure of disability”.

Autism question tossed out at phase 2

This Phase 2 website gives the reasons why our question didn’t progress further https://www.abs.gov.au/statistics/research/2026-census-topic-review-phase-two-directions

“Since the 2006 Census, the ABS has collected information about people with a core activity need for assistance. This largely includes people with a profound or severe disability. Feedback indicated that the current approach excludes a significant proportion of Australians with disability and collecting additional data would enhance the development and design of policies and programs for all people with disability. 

“The ABS considered options to meet this information need in the Census. In assessment, the topic revealed significant feasibility concerns and complexities in collecting additional data on disability in a Census context. The ABS determined that the topic would require multiple questions, in addition to the existing questions that collect information about people with a core need for assistance. There were also concerns regarding people’s interpretation of the question/s, and therefore the consistency of responses. 

“The ABS will continue to look for opportunities in the lead up to the 2031 Census and beyond to explore additional questions that could be asked to collect additional measures of disability in the Census.”

De-coding the ABS Statistics-babble

My original submission asked for a question about Autism and other neurodivergence. A simple census question like “Do you identify as Autistic?” or “Do you have ADHD?” wouldn’t have “significant feasibility concerns and complexities” or “require multiple questions”, as claimed by the ABS.

The ABS erroneously lumped Autistics together with “a broader group of people with disability” and this is what created the “significant feasibility concerns and complexities”. By the ABS’s own admission, “collecting additional data would enhance the development and design of policies and programs for all people with disability”, but despite the numerous findings about the significant hurdles facing Autistics in particular, the ABS has abrogated its responsibility to collect data on neurodivergence and pushed us to the back of the queue, “to the 2031 Census and beyond”.

So where to now?

Please follow this blog, this author or Neurodivergent Labor on facebook, leave a comment or message and help organise a public discussion on “Should Autistics be counted in Australia’s National Census?” This discussion will hopefully act as a springboard for further organisation and action to achieve census reform.