For us, autism doesn't feel like some detachable defect.

Take it away – and you don’t leave me, just improved. You change who I am.

This feeling isn’t limited to one ‘type’ of autistic person. Across support needs, most autistic people say the same (refs at the end).

2/11

That idea – that there’s a separable ‘pure self’ – is basically not one that's shared by us.

But it's very popular elsewhere!

Many millions are poured into #autism research every year, in the areas of treatment, intervention, prevention, and the hunt for biomarkers.

💰💰💰

3/11

The implication here – sometimes unspoken, & sometimes not so unspoken – is that autism is something to be reduced, corrected, or even eventually eradicated.

So my questions are:

1/ Whose problem is autism being treated as?
2/ And whose interests are served by that?

4/11

Because a ‘world without autism’ isn't abstract.
It's a world without autistic people. 🙎🏽‍♀️🙎🏾🙎🏻‍♀️

There’s also a deeper issue here.

Autistic people aren't believed about our own experiences. Or we don't get asked at all.

#UtaFrith said it would be unscientific to do so. More on her views here: https://mas.to/@KatyElphinstone/116206483353899881

5/11

Then, as we’re not listened to, society's understanding of autism develops without us.🤷🏽‍♀️

That flawed understanding is then used to overrule us, again.

Strange little loop. ➰

6/11

#EpistemicInjustice #Autism #AutismResearch

So what could ethical research look like, instead?

Here's the proposed researchers’ code of ethics:

1. Co-participation,
2. Respectful language,
3. Autistic differences not always as deficits,
4. No alignment with those promoting ABA, eugenics, and similar harms.

Far from today's reality.

7/11

Thanks @panda for this! And your work is in the references.

@KatyElphinstone Thank you for this thread

Such a code is ambitious but has more potential than just campaigning for better ethics in the autism research industry.

If this were to go ahead I see several phases:
1) Development of the code primarily by Autistic researchers
2) Inviting as many Autistic researchers and some potential allies, especially funders, to subscribe to it
3) Look for wide adoption… (1/3)