An increasing number of academic researchers have been working with autistic people as partners to address issues that are prioritised by them.

Autism advocacy and research misses the mark if autistic people are left out

Autistic people have been routinely misunderstood, ignored and excluded for decades – including from campaigns designed to promote awareness of autism itself. But this is beginning to change.

Autistic self-advocacy organisations and autistic activists have long criticised autism awareness initiatives, arguing that they too often emphasise the ‘deficits’ or difficulties of autism, rather than the profound possibilities of autistic lives. In part, this is because those campaigns are designed by non-autistic people, rather than by autistic people themselves.

This has led to sustained activism to change the emphasis and shift the balance of power, including within the academic community.

Some 11 years ago, autistic activist Ari Ne’eman, then president of the Autistic Self Advocacy Network, successfully campaigned to shut down a stigmatising campaign posted on billboards and other sites in New York City. The billboards displayed images of autistic people being held hostage by their autism.

More recently, outrage from the UK’s autistic community caused Edinburgh Castle to drop its support for the controversial US autism charity Autism Speaks’ Light It Up Blue campaign for World Autism Awareness Day. Instead, the famous landmark was lit up purple in celebration of the movement known as neurodiversity, which approaches autism as a natural part of human genetic diversity.

These successes are the result of sustained activism. And the message is consistent: ‘nothing about us, without us.’

The effects of this activism are now being felt in the academic community too.

Earlier this year, the editors of the international journal, Autism, responded to the longstanding requests of autistic activists to change the way they visually represented autism on the journal. They replaced the puzzle piece on its front cover – a symbol that implies autistic people are somehow incomplete and need to be made whole – a view understandably not shared by those who are autistic.

The same goes for the research agenda. For many years, research priorities have ordinarily been set almost exclusively by scientific funders and academics. And so, autistic people have rarely been involved in the decision-making processes that shape research or its application. They have been excluded from the very research that directly concerns them.

In the past few years, an increasing number of researchers have been working with autistic people as partners, where they are included in all stages of the research process, to address issues that are prioritised by them.

Such participatory autism research still represents only a fraction of the plethora of autism research conducted across the globe. But it is gaining momentum. Australia’s Cooperative Research Centre for Living with Autism is especially progressive in this regard. It prioritises inclusive research that genuinely involves autistic people and their allies in all stages of the research process.

It is time to listen to, and learn from, autistic people’s experiences and expertise – with regard to research, practice and advocacy. Non-autistic researchers will get our messages right, our services and supports right, and our research right when we involve autistic people in the decision-making processes that ultimately affect them.

For resources on doing participatory autism research, visit https://www.autismcrc.com.au/connect-hub/resources/inclusive-research-practice and www.shapingautismresearch.co.uk

Liz Pellicano