Thread by @DrMBotha

We are going to talk about this article so buckle up. I am featured and I am not particularly happy with how I am featured in it, given the depth and breadth of what I discussed in my interview. I am not happy at the lack of nuance in the portrayal of autistic people 1/

https://twitter.com/Spectrum/status/1618218883856453634

What this article lacks iis any real examination of systemic and institutional power between groups of people who by definition do not have equal access to or use of power. It begins by pretending that autistic and non-autsitic people are on an even playing field 2/

Worse so - that autistic people and researchers who have spent years dissecting our lives, our bodies, and our existence, are on an equal playing field. Lord help me, that is (pardon my language) crap. Autistic people are a marginalised minority and some are quick to forget it 3/

It questions responses to research by autistic ppl but never the content of research, never the language used in its dissemination, and never the structural violence that is at play when people use dehumanising language and rhetoric to downplay the personhood of our community 4/

It downplays the epistemic responsibility that academics and researchers have in not using research as a tool or form of oppression or marginalisation, which honestly, is what a lot of research *on* minority communities has done and continues to do 5/

It then uplays the epistemic responsibility that autistic people have by pretending that anger in the face of dehumanisation is irrational, uncalled for, harmful for non-autistic people, and inappropriate, and that autsitic people hold untenable social power in this regard 6/

It treats the interpersonal as the real base of power in autism research focusing on how many followers twitter accounts have and how many times people interact with tweets. Let me be clear - that is not where the power is. The interpersonal is not the systemic. 7/

You want to understand power & autism research? Despite the chatter, the majority of funding goes towards molecular biological autism research. The majority of publications in autism research fall within the realm. The majority of autism research is done by non-autistic people 8/

Non-autistic people dictate the language used to describe autistic people, the direction of funding used to study autistic people, the publications which get published about autistic people, the way that autistic people are taught about in universities. Everything. 9/

Most formal channels are structured in ways that specifically prevent autistic from being appreciated for their contributions to knowledge which they should have an inherent epistemic RIGHT to. So what do people focus on? A single platform that gives autsitic people space 10/

We won't discuss the abusive language and concepts which are regularly and without restraint applied to autsitic people, but we will dissect their social media for how many followers they have and pretend that tweeting about the ableist underpinnings of research is bullying 11/

On things left out here is a direct quote: "I think something I made clear but that is important to reiterate is that we are talking about different kinds of power because, although some researchers only have 500 followers on twitter, the papers that they publish will go on to be

cited hundreds of times, be read thousands of times, be assigned to course syllabi, and inform how hundreds of thousands of undergraduates who are members of society will go on to talk about and interact with autistic people globally."

"If you understand how this language rolls out into society, into newspapers, into classrooms, and lecture theatres, policy and more and so into autistic people's lives, it might be much easier to understand exactly why autistic people respond the way that we do. The language

seems less egregious, or obviously offensive, and yet it causes a lot of damage and yet has an heir of respectability and so rarely goes challenged by anyone other than the people it's most directly affecting."

Next I am painted as the Good Kind of Autistic. The Rational Autistic. Autistic Who Knows How to Control Themselves. Unlike my often close friends or colleagues who are painted as the Bad Kind of Autistic. The Mean Kind of autistic. I will not be pitted against my community 16/

Let me make it as clear as the light of day on a cloudless morning: I am autistic before I am a researcher. I said it (and it was convieniently left out) that I will not tone police my community, and I stand behind them 100% when they call out researchers. Its their right. 17/

I am not so institutionalised into the humdrum bullshit of academia that I will ever tell an autsitic person confronting ableism in autism research that they really should be nicer about their dehumanisation, objectification, or marginalisation by non-autistic people. 18/

I support @AnnMemmott and I made it maddeningly clear that I support Ann. I have never been as heart broken as to any attempt to pit me against Ann, or any other autistic person. I point blank refuse to be that token, and I won't be now. This is MY community 19/

My response is portrayed as measured even in exapseration. Why Im exasperated is left out: "its because the state of autism research is so dehumanizing, and for autistic people like me that is a constant emotional burden we are expected to just handle and deal with all the time."

In terms of what I said about people leaving the field: It was a direct response to claims that non-autistic people are leaving. I pointed out that the people I see being systemically pushed out are autistic people, and not some flood of neurotypicals leaving by my experience 20/

These two things (portrayed as the same in the article) arent the same. If someone is doing research on a community & cant figure out how to interact with the community they are researching thats a problem. It isn't the same as the actual researched group being pushed out. 21

I note that the abusive emails and comments from more senior academics in peer review, emails, and other correspondence from supposedly respected researchers (some of which targeted autistic people specifically) that I discussed never made it in either. Funny that 22/

And let me make it super duper clear - I would never in a million years compare them. Being told the language and basis of your research is ableist is not the same as being persistently held out of the field that is *about you*.

I'd approached the write a piece (ironically on my latest piece of research which is about ableism in autism research) for Spectrum News. But given how autistic people were portrayed in this piece (including blaming the traits of autism for our behaviour), I am withdrawing

I refuse to be positioned against my community, and then used by the same outlet who let something like this be published uncritically. I won't be used like that and if people need to know where my loyalty lies its not to research foremost, its to my community.

& to the nonsense that maybe the traits of autism are why autistic people are so angry and confrontational about autism research, well that's something convienient to blame so that you nevver have to face up to the horrific violence autism research has perpetuated. Lucky right?

So I guess this marks my fall from grace as the measured and good kind of autistic. Genuinely Tragic 🤷