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.

Now let's talk about money. 🤑

As there are entire systems that depend on autism being framed as problem, burden... and opportunity.

Research funding,
Intervention markets (bring in health insurance, and there are millions to be made!),
Training pipelines,
Investment markets.

8/11

There is, quite literally, an Autism Investor Summit – where autism services are discussed in terms of market growth and M&A.

So yes.

Autism is also a business model.
(refs at the end)

9/11

Which brings us back to those questions:

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

And...

3/ What kind of future is being imagined??

10/11

If autistic people are saying ‘this is part of who I am’ and the response is to continue to fund ways to reduce and eliminate autism, while making very sure our voices are not heard.

That isn’t neutral.
It's chilling. 😨

11/11

End of 🧵

Refs in link below 👇

Here are the references for this thread:

https://www.neurofabulous.org.uk/refs-for-epistemic-injustice-thread.html

@KatyElphinstone

Looking into the origin of the phrase 'high functioning autistic' really opened my eyes. They want what they can use.