To autism “experts”, inspired by Howard Buten’s scary book on autism.


You were the ones who watched how we moved, then said what that must mean. You wrote that we lived in closed-off worlds, rejected all contact with the world outside. You wrote this when we did not react to things the way you expected, you even wrote this when we had reflux that caused us to vomit our food, it was all rejection of the world outside. You defined us based on what you imagined to be our isolation. You looked at us and you saw only your imaginings of what life must be for us, then you defined us based on your imaginings.

It’s tempting to say you couldn’t help it. You’re for the most part non-autistic. Non-autistic people’s brains really do work more that way than autistic people’s brains do. You are more likely to superimpose your imaginings over the real world, and to sustain that superimposed version of things. But it’s not just that you couldn’t help it. It’s that you were the non-defective ones and that gave you the power and the right to define us, the defective ones, on the basis of your superimposed mental hallucinations.

Part of our role in society is to be a counterbalance to those hallucinations, to have clearer perception of things you can’t see through the images in your head, just as part of your role in society is to do all the things that your thought-shortcuts free your minds up to do. But that part of our role in society has been denied for a long time, like the roles of so many others you don’t seem to have room for, so your mental hallucinations continued to take precedence, and we continued to be defined according to how you saw us through your mental hallucinations.

“Even though non-autistic people may hate or fear or pity us for being different, I think they really need us to be just the way we are. We’re the ones who notice that the emperor isn’t wearing any clothes.” -Jim Sinclair, What Does Being Different Mean?

You saw us as unaware of our surroundings. You saw us as unaware, particularly, of people. You saw us as encased in a bubble world totally separate from you. It’s kind of a strange thing to hear from people who have much more wiring enabling them to live in their heads to the point of rearranging their perception of the world around them, than we do. But again, you had not only those particular biases but you had the power to inflict those biases on the rest of us.

So now you come along and say that if someone has relationships with others, they are coming out of autism. You say that autism is defined by a shell that you hallucinate around us. Even if they had relationships all along that you were unable to see. You come along and say that we’re in these enclosed worlds, and it’s your job to come in and get us out, but you’re oblivious to the much more enclosed worlds you tend to live in, and oblivious to how much of the world we do perceive. You come along and basically say that anyone who can talk about it isn’t autistic, anymore, or isn’t very autistic anymore.

But you’ve defined autistic along your parameters. You have defined it, not in terms of how we actually work, but in terms of what you guys have been imagining all along to be inside us. Then you made the rules based on what you imagined rather than what was there.

And now you’re writing books, to be read by many people around the world, that may as well all be your imaginings. You write very well. You write deceptively well. It may take an autistic person, maybe an autistic institution survivor in parts, to see through what you have written, what you have gotten yourself to believe about us, what you are telling others to believe about us, what you are telling others to believe about you. What you are telling us to believe about ourselves, which is the scariest part.

Take a look at what your ideas about autism have been founded on: Mental hallucination on top of imagining on top of bad inference on top of mental hallucination stacked for decades. Take a look at the assumptions you have made. Take a look at alternate explanations for what you have done to us, for what we have done to you. Have faith that even if everything you thought you knew about us falls apart and leaves you totally confused, who and what we are is still going to be here and will be easier to see. And then maybe you’ll be able to actually listen to us and hear something other than a distorted reflection of yourself.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

4 responses »

  1. Wow.

    Buten deserves all he gets.

    So do all the non-autistic experts who presume to know our reality. Some of them get close, but the majority are just off the mark. Sorry.

    Indeed the premise of Buten’s book is scary as is most psychoanalysis. It’s a well worn path, since Bettelheim. I had thought him decent and civilised. It looks like I was wrong, and blinded by a certain urbane sheen.

  2. The trouble I was having with his book was that I couldn’t figure out how to talk about what was disturbing about it. At least, I couldn’t for instance find easy quotations and stuff to explain it. The reason being, I think, that his entire book is constructed within a certain worldview, and it’s that entire worldview that is disturbing, not each piece of content.

    So I decided to address at least part of the worldview. I couldn’t address a lot of the other parts of it, the ones that come in general from being someone who runs an institution and actually thinks your inmates appreciate you (or should) for it (!), or in general someone who comes up with your own ideas of who people are and who they should be and how you should make them who you think they should be, but I did address the strange way in which conceptions of autism have mutated over time into something barely recognizable.

  3. Yes, people looking over Buten’s book would not have picked up a single true idea of what autism really is, and that I find sad.

    Not to mention a bag of untrue ideas of institutions. Gratitude? Ridiculous when they treat you badly, unless you’re a matryr of course. And gratitude, in a healthy recipriocal relationship, goes both ways, doesn’t it?

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