Autism and respect for our life story.
I want to talk about this.
So many autistic people are treated as laboratory experiments. Zoo exhibits. Providers of data about ourselves so that people can 'fix' us.
In many parts of the world, that kind of data-stripping is insulting/

I have taken part in quite a bit of research.
I'm expected to reveal the most damaging, harrowing stuff as part of it.
The researcher grabs the lot, hands me a book voucher, and is gone.
The net effect is like an assault/

But it gets worse than that, because the data is now *theirs*. The researcher can change it, reframe it, sell it on, use it for purposes I never envisaged. Combine it with other data to make patterns and conclusions I never said and never meant. If lucky, I might get a copy/

And this has been done to generation after generation of autistic people. Missing out our creativity, our spirituality, our authentic communication, our culture. Reframing what we say to fit the narrative of the people paying for the research/

Some charities use autistic people as a way to attract other autistic people to donate their data for misuse. Well known autistic people are dragged onto their magazine front pages to make it look legitimate and OK. Everyone ends up feeling used and abused/

In Indigenous cultures, for example the Maori culture, it takes a very long time indeed for someone to trust an outside researcher. And the information shared with them is expected to be treated with absolute honour and respect, kept safe, cared for/

I wade through research paper after research paper in which the 'ethics' section mentions none of this. Not a thought given to the harms done by data-stripping, alteration, failure to reflect our lived reality, culture and all we hold dear.
I would very much like to see change/

It would be good to see more researchers approaching with respect. Taking time to get to know us and truly explain how our life story, the things we hold most dear in our hearts, are going to be treated with respect also. How we share control of that data, that narrative/

I work with people who understand that principle. Who don't use autistic people as tokens, a tick on a form, a 'yes, we included someone [whilst nicking their life story so we get a better academic job] '
Respect the people whose lives you are discussing.

Always.

In places like Autscape, & the Autistic Pride networks, autistic people gather to be ourselves. To honour our own authentic way of being and communicating. To find our own meaning and our own joy, and share in ways that collaborate.
My thanks to all who enable healing to happen