On the lack of representation of autistic people in academia, training, research, education and charities dedicated to autism. Especially when they say things that directly contradict the autistic lived experience.

First published in December 2019.

One thing that really bothers a lot of autistic people, including me, is the lack of representation of autistic people in the blended world of academia, training, research, education and charity dedicated to autism.

The situation is slowly improving, but not quickly enough given the indirect and even direct damage this can cause. Non-autistic people still seem to outnumber autistic people in the jobs and roles associated, and autistic people still struggle to be heard.

I am alright, because I have gone and got myself 11k Twitter followers. Hurrah for me. But the same cannot be said for many autistic advocates and voices. Many remain ignored, especially non-speaking autistic people who may actually be able to use the net for communication.

So, when we hear that charities, academics, conferences are highlighting non-autistic voices, there is an understandable unhappiness and dissatisfaction at the situation. Especially when these people say things that directly contradict lived experience.

There is a sense that we are still not really worthwhile. That our lived experience is irrelevant when placed against hard evidence. This dismissal makes some sense in well established sciences, but autism? No way. Research is still in its infancy. Research into autism really hasn’t gotten very far yet. As such, the accounts of autistic people are incredibly valuable as they add to a limited dataset. Experiences of autistic women or autistic-while-black are especially important as there is so little objective data.

What we tend to see is a new bit of research is published with a bold title or finding, saying, “Autistic people do feel empathy! Shock horror!”

This is met by the autistic community with a shrug, and “Well, if you’d bloody asked us we could have told you.”

But instead some researchers dick around with rats (thanks for the connotations guys) and remain desperately behind the curve on issues that matter to autistic people, like burnout and autistic aging.

And then there is the persistent focus in some quarters on finding a ‘cure’ for autism, which is just eugenics at its core. If you have ever wondered why autistic people don’t like Autism Speaks or Autistica, it is because of this among other reasons. The autism ‘industry’, if you permit the term, is caught between appeasing very vocal parents, disappointed that their child is different or blaming autism for all their problems, and autistic people themselves who seek advocacy and restitution.

Too often the former – ‘autism moms’ – are prioritised as there lies the money and acclaim. This is the real issue with Autism Speaks in parti, to the point where I would say the vast majority of autistic people avoid them at all costs.

Please note I am not disparaging parents of autistic children generally – it is a very specific demographic, not all of them! But this minority is loud, powerful and often has politicians onside.🔷

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[This piece was first published as a Twitter thread and turned into the above article on 19 December 2019, with the author’s consent, with the purpose of reaching a larger audience. It has been minorly edited and corrected. | The author of the tweets writes in a personal capacity.]

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(Cover: Flickr/Drew Coffman. / Licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.)