I wrote the following response to an article in today’s Sydney Morning Herald by Natassia Chrysanthos.

This article is part one of a three-part series on how the way we understand Autism in Australia has changed. Natassia highlights that:

‘…most people point to 2013 as the point things really shifted. In the same year that Australia started rolling out a world-first disability insurance scheme, the official diagnostic criteria for autism expanded significantly.”

Something else happened around then, too. Very quickly, the NDIA capped ABA therapy budgets because the price gouging from ABA providers is truly next level. The NDIA were right to do this.

Parents who chose this approach for their children were big, big mad about it - and have been campaigning ever since to have control of how funding is delivered, and who to. And here we are. They have certainly been busy.

Today I asked Natassia the fiscal question nobody seems to want to ask:

Rather than kicking participants off the scheme, why don’t we apply some reasonable limits to the amount of ABA hours parents are allowed to have funded by the NDIA?

Why aren’t we talking about the obscene amount of money the NDIA spends on ABA and it’s derivatives (PBS, etc) and cutting those budgets?

The ABA world is a tight-knit, interwoven world that supports the big market racket started in the 90s in which fixing Autistic people is the product.

Some call it the ‘Autism Industrial Complex’ and I think that’s about right. Smiles and “I just want to help children thrive” aside, at the end of the day, this issue is about money.

The problem with that is: we never asked to be fixed, nor to have our lives be a product, and under the conditions of the UNCRPD, we are the authorities of our lives.

You are not.

Response begins below -

“Hi Natassia,

Just finished part one of the series. :)

Something else happened in 2013 and 2014 - there was a significant development in insurance schemes in the USA and Australia regarding ABA therapy funding. For the first time, particularly in Australia, there was a pushback against the enormous amount of hours that parents had their children enrolled, incurring huge costs.

ABA therapy was capped in 2014. Nicole Rogerson spoke out about it angrily on Facebook, saying “what are we going to do about this?”. 

I think we are now seeing exactly what it is they did about it. 

Over the last 10 years, when you trace Senate Inquiries, reviews, media articles, press releases, forum posts, and the slow changing of language - you see the pushback against expanding the criteria for Autism, largely led by Nicole Rogerson and Hollie Hughes, and backed by actuaries, ABA providers, and those in research who receive grants from the charity arms of these providers.

It is all there when you look. The moment in time we are in was manufactured completely.

These folks advocate fervently for ABA and have worked to exclude late-diagnosed individuals and those without intellectual disabilities from the NDIS. This is largely because of our resistance to ABA and to the medical model.

There's a close-knit pro-ABA community in Australia, often associated with AEIOU, with whom adult Autistics like myself have a strained relationship. They find us challenging because we state that ABA tends to normalize behaviours, leading to masking, a significant risk factor for suicide in Autistic teens and adults. Anything that focuses on normalisation rather than affirmation is a health risk for Autistic people.

This is very challenging to parents who have put their children through ABA. Like most parents whose parenting is called into question, they react with anger and often, finger pointing. I do understand this. No parent likes to feel like maybe they haven’t made the right choice for their child. They also truly believe it is the best thing for their kids (it isn’t, for any child).

AAA President Nicole Rogerson is a key proponent of ABA in Australia. Alison Singer in the USA is as well - and insists that ABA is the only solution for severe behaviours, which isn't true. 

The ABA world is interconnected globally - for instance, Singer and Dissanayake both serve in roles with the International Society for Autism Research (INSAR) (autism-insar.org) and they both contributed to the controversial Lancet article in 2021 that promoted the idea of profound Autism, and supported ABA strongly.

The deeper you go, the more you see how in such a short historical time - after all, ABA has only been around since the 90s - this ‘therapy’ has embedded itself in most Western countries, despite the very loud voices of Autistic people opposing it. This is market-driven. 

With cheap labour, and a high profit margin, ABA is big business here and in other places. Parents are gouged for fees; staff are paid very little, and trained not particularly well. 

Also, most of their clients are children, and many with co-occurring Intellectual Disabilities, and significant communication needs. There are strong barriers to these young people self-advocating against the choices of their parents.

Personally, my child and I have overcome similar challenges to those that Singer has said require ABA intervention - without ABA. We have done this by focusing on understanding and meeting our needs through OT and NDIS support, and connecting to the ND community. For long periods, these needs have been what even these clinicians would term “severe”. For my child’s privacy and my own, I will not go into further detail.

The idea that the Neuro-affirming approach, and supports like OT, only work for low-needs children is patently wrong.

Despite “naturalistic” rebranding efforts post-COVID to address the global market downturn (with Inklings, Positive Behaviour Support and PACT therapy being examples), ABA remains rooted in normalization rather than listening to Autistic voices and addressing their needs. There is no getting around this.

My main concern is: who gave them the authority over our lives? This is what the UNCRPD brings to the forefront. It agrees that we are the authority over our lives. 

And we always will be. Nothing about us without us. The UNCRPD challenges the market, and the market funds research: and so there is a battle of money v rights. 

A tale as old as time, really.

Also - the amount of money the NDIS pays toward ABA therapy is obscene. Rather than kicking some kids and adults off the NDIS, why not pull funding for ABA - all or some? 

Why is nobody asking that question?

Great article. I look forward to the rest. x”