Mel Baggs added to the post on the problem with ‘autism experts‘:
All you have to do in order to become an autism expert is get a degree and form a theory about either what makes autistic people autistic, or how to make autistic people more normal. That’s it. You don’t even have to prove your theory.
And if you do actual “research”, it doesn’t have to be real research. It can be stuff with holes in it a mile wide, that is designed to prove your theory and nothing else.
You don’t actually have to know a single thing about actual autistic people. If you have to know anything, all you have to know is things that other experts say about autistic people. Most so-called expertise in autism consists of memorizing bullshit that experts have come up with to explain behavior that they don’t understand.
It’s quite rare to find an expert who gets it, even about the simple things. I’ve met a few, but they’re few and far between.
One expert I met did not believe that sensory issues were a real thing. She literally didn’t believe that overload was real. She believed that meltdowns and shutdowns were manipulative behavior done by autistic people to avoid doing what we’re told. She did not understand basic, basic things, like that an autistic person might have trouble holding a conversation with more than one person at once. It became obvious over only a short period of time that she understood virtually nothing of what goes on in autistic people’s heads.
She also refused to speak to a cognitive interpreter I brought along, even (hell, especially) when I became completely unable to communicate in words of any form whatsoever. (At that point in time, I could speak some of the time, type some of the time, and do neither some of the time.) She wanted me to communicate and when I couldn’t communicate in a way she understood, she blamed me for it.
To her, what goes on in our heads didn’t even matter. Her goal was to control autistic people’s behavior. She was very famous for being good at controlling autistic people’s behavior.
I’ve noticed that it’s the most manipulative staff types who insist on accusing disabled people of manipulation. She was no exception. Her entire specialty was manipulating autistic people. Anything that prevented her from manipulating us, was what she called manipulation on our parts. She never directly accused me of manipulation, but I read one of her books later on and it turned out that at the times she got the maddest at me (during shutdowns and the like), I was doing things that she classified in her book as manipulative behavior: Shutdowns, meltdowns, temporary loss of specific skills, etc.
She is not unusual among autism experts.
I used to know a little boy who was sent to an extremely well-renowned autism expert. Very famous, has written books on autism. After she put him on one of her behavior programs, he lost all of his previous toilet training out of sheer terror. He also developed post-traumatic stress disorder symptoms from her behavior programs.
I’ve read her books, and she basically knows nothing about autism. She knows a lot of statistics, but she doesn’t put them together in a useful way. She simply uses them to reinforce stereotypes about autistic people. She can rattle off all the “received wisdom” about what makes autistic people autistic, but she doesn’t know the first thing about what makes our minds work.
And again, she doesn’t care. She doesn’t give a shit. All that matters to her is manipulating autistic people. There’s a lot of that going around. She also said that the boy in question would never learn to talk, never do this and that and the other thing, and that he had a severe intellectual disability. He learned to talk and he went to gifted classes.
Never trust an autism expert who tells you what your child will never do. That particular expert is famous for giving autistic children the most bleak prognosis she can possibly come up with (one that actually fits a small minority of autistic people), and for saying things like that autistic children will never love their parents. (Which is exceedingly rare among autistic people, and when it happens it’s not usually because of autism.) She considers this “straight talk” and believes that to do anything else would give parents “false hope”. So she opts for false despair instead.
I could go on.
Autism experts are, for the most part, not actually experts in anything directly related to autism. Generally all that they are experts in is manipulation or in other experts’ ideas about autism. That’s different from being an actual expert in autism.
Even autism experts who are actual experts about autism can get a lot of things wrong, they’re just people who actually get it about some facet of autism. And that’s some facet, they don’t necessarily get it about all facets, and many times they focus only on one part of autism and ignore others.
Among those with an actual clue about autism, I would name Martha Leary, Morton Gernsbacher, Laurent Mottron, Michelle Dawson, and maybe Anne Donnellan. This doesn’t mean an endorsement about everything they say or do. It just means that they understand something major about autism, which most experts do not.
You’ll often hear slogans like “parents are the real experts” or “autistic people are the real experts”. Those things are both true and not true.
Most autistic people are at minimum fairly expert about our own personal experiences (most people in general are not as expert about our own experiences as we think we are, which is why I’m qualifying that). Some autistic people are experts on more than that, while others are not.
Temple Grandin is a good example of what happens when the average autistic person gets held up as an expert on all of autism. She’s done a great deal of analysis of her own personal experiences. For a long time, she simply did not go beyond her own personal experiences, at all. She would literally say, “Autistic people are picture thinkers” and things like that. That’s a direct quote. Given how few autistic people were speaking publicly about autism at the time that she was doing this, it’s understandable that she would make these generalizations.
However. Eventually she learned that not all autistic people were picture thinkers. Then she talked to, she said, hundreds of other autistic people about the way they thought. I’ve talked to hundreds of autistic people about the way they thought and come up with easily dozens of different thought patterns — even within the realm of visual thinking there’s immense amounts of differences as to how it happens. But instead of noticing how many differences there were, she decided to put all autistic people into a tiny number of categories as to how they thought.
So now there were “visual” thinkers, there were “music and math” thinkers, and there were “verbal logic” thinkers among autistic people, according to her. Three. Out of hundreds, she came up with three. I still don’t understand.
It’s common for autistic people to do things like that. Either assume all autistic people are like them in a particular way. Or, when they find out that not all autistic people are alike, to then decide there’s only two or three kinds of autistic people. Temple Grandin did that with her idea that there’s a continuum between “Kanner-Asperger autistics” like herself and “regressive-epileptic autistics” like Donna Williams.
Many autistic people who do this will assign one type of autistic people to Kanner autism and the other to Asperger’s. What gets ridiculous is when different people are assigning different things to both. Like some autistic people will claim that picture thinking is a Kanner thing, and others will claim that picture thinking is an Asperger thing. There are arguments about which one has more sensory issues, more cognitive issues, more self-injury, more additional conditions, etc. Pretty much none of it goes back to what Kanner and Asperger observed in their patients. Or even what they described in their patients. (What they observed and what they described are two very different things, in keeping with the long tradition of autism experts making shit up when they don’t understand things.)
But even when all these generalizations are going on, autistic people tend to know more about autism than autism experts do. Although some of us, also, learn to simply repeat what experts or other autistic people have said about autism, rather than describing our own experiences. (Some of us may not even be able to describe our own experiences rather than repeat things others have said.)
But when we do describe our experiences, and when we are not succumbing to pressure to ‘be autistic enough’, we tend to be reasonably expert about that, at minimum.
When autistic people actually become what I’d consider an expert on autism, it’s usually because we’ve spent a long time learning to understand autistic people who are not ourselves. This may be through interaction, scientific research, or personal research. And preferably the autistic people we are learning about are not in a specific insular community that self-selects for a smaller range of people. When we learn a lot about the experiences of a wide range of people, or learn a lot about specific aspects of autistic thinking and perception through scientific research, that’s the closest to an actual expert that you’re going to find.
But that’s not what most people mean when they talk about autism experts. When they talk about autism experts, they’re thinking Simon Baron-Cohen, Tony Attwood, Bryna Siegel, Ivar Lovaas, and others like them. Nonautistic people with advanced degrees in autism-flavored bullshit. Many autistic people have horror stories, even as there are a few experts who truly deserve the label. Autism experts are responsible for some of the worst spread of misinformation about autism out there, and some of the worst mistreatment of autistic people. Because when they something, people listen and obey more often than they’d listen to anyone who actually knew what they were talking about.
That said, even the bullshit or mostly-bullshit kinds can be useful sometimes. For instance:
- Having a diagnosis can be useful even if you don’t get anything directly useful from the experts who diagnose you
- Having a doctors note that you need accommodations can be helpful, particularly if you already know what you need and it’s just a matter of getting a doctor to sign off on it
- Some autistic people benefit from various forms of medication; some doctors can prescribe useful medication even if they don’t have a particularly deep understanding of autism or autistic experiences
- Bad experts can still be a useful source of referrals, for instance to occupational therapists
I don’t want to give the impression that it’s always or even usually a bad idea to go to those kinds of people for help. Sometimes it’s the best available thing; it’s in many circumstances not particularly dangerous. I don’t want to unduly scare people or dissuade people from accessing resources they can benefit from.
That said, I agree with everything you said.