Hello, and welcome back to a special midweek edition of The Autistic Writer! Yes, I know, it’s not like me to deviate from routine (autistic in-joke, Simon), but I couldn’t resist it. This morning, I almost choked on my sesame seed bagel when I was scrolling through Twitter, and came across an article from the wonderful Rachel Charlton-Dailey, addressing Spectrum 10k, the autistic community’s concerns about it, and the project’s figurehead and driving force, Simon Baron-Cohen. I could say a lot of things, but for now, I want to focus on one short sentence attributed to Baron-Cohen in this article, because it is what is known in some circles as a doozy. It is almost spectacular how much nonsense Baron-Cohen managed to squeeze into eleven words, and it prompted a tweet from me.
And following my tweet, I promised to deliver my forensic breakdown of exactly what is wrong with Baron-Cohen’s, seemingly rhetorical, question. Well here it is…
“the autism community“: Baron-Cohen was being very sly using the term autism community. I mean, he seems to be directing the comment at the actually autistic people who have raised concerns about S10k, but those actually autistic people are not the autism community. We are the autistic community, and there’s a big difference. The autism community is made up of, yes autistic people, but also researchers, charity professionals (oxymoron of the day), ABA apologists, and many, many more. But the autistic community, that’s just us – the actually autistic people. So why is Baron-Cohen trying to conflate the two in this comment? It wasn’t an accident; he’s too smart for that. He knows the difference. It’s a deliberate ploy to create an illusion that the researchers, doctors, charity professionals, ABA apologists, warrior parents, and- oh, yeah, don’t forget – the autistic people, are one big happy family, with a couple of embarrassingly loud, inappropriate uncles paying a visit. You know, the relatives who everyone dreads coming, but they feel they have to put up with? Well, in SBC’s narrative, that’s what we, the actually autistic people are. We’re not mentally competent, we don’t know what’s best for us, and we make a lot of noise. By creating a narrative in which SBC is in the same community as us, he can position himself to the unwary or ignorant outsiders (ignorant of the real autism issues, that is) as the paternal figure; the father of autism care and research, making sure the loud, inappropriate relatives get “cared for”. I’m not reading too much into this. SBC might be heartless where autistic people are concerned, but he is smart and devious. He knows exactly what he is doing.
“genetic research” Genetic research is science. And by and large, science is a good thing. I love science. I read loads of science books. There’s a but. Science does not operate in a social vacuum. Whenever any research has the potential to affect people – which, one way or another, means all research – ethical concerns must be observed. And this raises something interesting: the ethics of ethics, or meta-ethics. I could go down a rabbit hole, here, as books have been written on this subject. But anyone who knows me knows I like to bottom-line things, so I’ll cut to the chase. Any researcher, from the college student to the high-flying professionals like SBC knows that ethical protocols have to be observed. But who decides on the ethical protocols? All too often, the decision making on this stems from the experts, or leaders in the field. Well, guess who is probably the leader in the autism research field? This is not necessarily to say that SBC is allowed a free reign to do whatever he wants whenever he wants; someone is always watching the Watchmen. But he is the man others listen to. And so when the announcements from S10k continue to blare out their ethical values, it’s worth remembering that while SBC wields the influence he does, those ethical measures are simply checks in a box with no meaning. Doubt me? S10k claims the project, which is collecting DNA from autistic people, will not be used for eugenics. But Baron-Cohen has separately admitted that no one can guarantee against DNA data being used for the purposes of eugenics in the future: “There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.” When talking about genetic research in the 11-word sentence under discussion, SBC is trying to present science (“genetic research”) as a purely and totally good thing, with no reference to context, in order to make autistic people with very valid ethical concerns look like luddites. But we’re wise to you, Simon. We see what you’re doing.
Interlude: A brief message
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“should ever happen“. With this part of his remark, SBC engages in what casual philosophers would call a dick move, but which many of us will also recognise as a false dichotomy. The comment as a whole from SBC is basically a complaint that the actually autistic community (which, as I said above, he has conflated with the autism community) are unfairly maligning his beloved S10k project. He only wants to do good with it, he’s trying to persuade us, and if he’s prevented from going ahead, surely, that means no genetic research will ever happen! No, Simon, you’re bullshitting, and you know it. Like the rest of the actually autistic community, I’ve been all over S10k, and we have shared many opinions and thoughts about it, and I can confidently say with no fear of contradiction that there is absolutely no movement among us to do away with all genetic research. Health issues are very important to autistic people, generally speaking, and it goes without saying that genetic research has contributed hugely to medical science. But now comes the really devious bit from S10k; they are presenting their project as a boon to medical science; namely the so-called “co-morbidities” that come with autism. Sneaky move, because at face value, that seems to carry some weight. But we don’t only work at face value. Simon, we autistic people will look very carefully at things that affect us. If S10k wants to advance medical science in regard to the “co-morbidities”, why is it not looking at the huge numbers of non-autistic people in which the health issues are also present? The medical research, “co-morbidities” claim is a smokescreen. There is no need to target autistic people in this way. Go ahead and do your genetic research, Simon – you don’t need autistic people for it; the non-autistic population gives you a much larger sample size in fact! Trying to suggest that the actually autistic people are against any genetic research, for anything, ever, isn’t just a false dichotomy. It’s a bald lie.
“?” When you take the above points in their true context, you can see the question mark at the end of SBC’s eleven-word sentence for what it really is. He’s not asking a question at all; he’s making a series of carefully coded inflammatory statements about autistic people in order to defend his indefensible DNA gathering project. He can pose it as a rhetorical question, sure, and throw in a high-shouldered shrug too, as if to show he’s completely baffled by the reactions of his loud, embarrassing relatives. But it won’t work, Simon. You’ve got the school smarts, but not the people smarts, and how ironic is it that the actually autistic community; the people you have tried for years to dehumanise in the eyes of the public, are calling you out on it?
That’s all. I’m tired. Thanks for reading, people.
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When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.