The Frontal Cortex

Autism and Neurodiversity

Posted by Jonah Lehrer on February 22, 2007
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It’s a gripping video, a youtube window into the autistic mind:

And now Dr. Sanjay Gupta, the telegenic brain surgeon on CNN, has spent time with Amanda, the “low-functioning” autistic woman produced and starred in the video:

She taught me a lot over the day that I spent with her. She told me that looking into someone’s eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. Is she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

It’s a very Foucaultian idea, that “madness” or “dementia” or “autism” is largely a social construction, defined by its opposition to “reason”.* As Gupta points out, Amanda is only “low-functioning” if we force her to function within the normal linguistic confines of society. If she is allowed to type on her computer, and make her videos, and express herself in her own language, then she simply embodies another form of communication. She is an emblem of “neurodiversity,” a poignant reminder that we should always “honor the variety of human wiring”.

*I should note that I’m not endorsing the thesis of Madness and Civilization. Foucault lost much of his appeal for me once I actually met people suffering from “madness”. I quickly realized that schizophrenia isn’t simply a social construction. Definitions of madness may have fluctuated wildly since the 18th century, but a paranoid delusion is still a paranoid delusion. That said, people like Amanda remind us that beneath every psychiatric label there is a real individual, full of their own ideas, insights and expressive forms.

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Comments

  1. #1 tricia
    February 22, 2007

    Amanda has a blog as well – ballastexistenz.autistics.org

  2. #2 mcewen
    February 22, 2007

    ‘honor the variety of human wiring” – well said and thank you.
    Best wishes

  3. #3 Rich
    February 24, 2007

    She is an emblem of “neurodiversity” a poignant reminder that we should always “honor the variety of human wiring”.

    Jonathan I simply can’t agree. (Jonathan can you tell I just found your website. Very good subjects.) We don’t honor the variety of human wiring. That’s like saying we honor the variety of prostheses. And, to classify Amanda as just another variety of brain wiring does a tremendous dishonor to her. Amanda is not just otherwise wired. She is handicapped. Her handicap is severe. That handicap is a part of who she is. It doesn’t define her but it is part of who she is. If I were to meet her I would do what I do with other handicapped people. I would talk to get to know her a bit and then shift the conversation to her autism. And we would talk about it as if it were a new suit. (If she was comfortable in doing so and most handicapped people are comfortable talking directly about their handicap. They feel so because they know they are not their handicap). I then shift off the handicap and talk to her about the things in her life. I honor her by accepting who she is, handicap and all. From the tape I’m sure I would come away honoring Amanda not because of her wiring but for who she is in spite of her wiring.

  4. #4 Caledonian
    February 25, 2007

    I quickly realized that schizophrenia isn’t simply a social construction.

    People given the label of ‘schizophrenia’ usually have something deeply wrong with them. That does not make the label any less of a social construction.

  5. #5 amy
    February 26, 2007

    I quickly realized that schizophrenia isn’t simply a social construction.

    you’ve built yourself a bit of a straw-foucault, i think.

    “social construction” doesn’t here refer to “construction” in a literal-material sense, but rather to the way understanding and meaning are built up around a literal-material thing, and the ways of interpreting and acting that are made possible by that understanding.
    true, “a paranoid delusion is still a paranoid delusion“.
    but if your cultural context doesn’t include the notion of “paranoid delusions” and believes in, say, demonic possession, then your experience of those delusions and your understanding of what they mean and the way others around you will react will all be radically different.
    this is the crux of it — to believe yourself to have been possessed by devils is a very different experience to believing yourself to be suffering from a disease. both suck, but they are very different.

    so, yes, the symptoms of schizophrenia are real, materially existing things.
    but foucault was never arguing otherwise.
    what he was arguing is that the concept/idea/notion of “schizophrenia” — the definition of the term, its diagnostic criteria, our assumptions about its significance and origin and meaning — these are all cultural artefacts built up around those symptoms, and they are the product of a very specific time and place. they are a social construction.
    that’s all it means.

    maybe have a look at this article for a more well-developed argument against this (very common) misinterpretation of “social construction”?

    fascinating video, though. thanks.

  6. #6 Matt Ray
    February 26, 2007

    I’m not so sure, Rich. Autism doesn’t seem anagolous to other disabilities. It isn’t just sometihng not working or working poorly, but the mind working in a profoundly different manner. It seems like the autistic mind is processing information, drawing conclusions and formulating responses in a unique form. It isn’t making bad connections so much as atypical connections. I’m not sure you can really find an objective standard for how information should be expressed. It is obvious that she is communicating. One could compare this to visiting a country where you don’t speak the language. You are at a strong disadvantage, but that doesn’t mean your means of expression is invalid.

  7. #7 sd
    February 27, 2007

    Rich, I don’t know what to make of the fact that you apparently have a standard pre-determined strategy for having a conversation with a disabled person. Why can’t you just talk to them? When you talk to an able-bodied person, do you go into it with a plan of how you’re going to “honor them for who they are”?

  8. #8 sam coleridge
    February 27, 2007

    agree with matt and sd on this, rich. autism is a state of entrenched infancy, by and large. the brain is taking in the same sense data that ‘normal’ brains do, but lack the richness of the concept forming aspects of processing data, so see their world as discrete packets of information rich in detail but unable to be parsed into concepts we take for granted, like ‘mum’s face’ or ‘spot, the family dog’ – rather, each view of the world is novel.

    madness is something else entirely – a mis-wiring of the normal wiring we each usually have. autism is its own world and has much to show us of the world in each of us. we are all ‘autistic’ behind the amazing abaility of our brains to make quick useful amalgams of data into simple concepts.

    but your method of interacting with those you call ‘handicapped’, taking time to talk and listen to them, is to be applauded – honouring each of us our individual existence. just don’t be mindset by thinking all difference is a ‘handicap’…

  9. #9 Rich
    March 1, 2007

    Matt Ray: I’m not so sure, Rich. Autism doesn’t seem anagolous to other disabilities. It isn’t just sometihng not working or working poorly, but the mind working in a profoundly different manner. It seems like the autistic mind is processing information, drawing conclusions and formulating responses in a unique form. It isn’t making bad connections so much as atypical connections. I’m not sure you can really find an objective standard for how information should be expressed. It is obvious that she is communicating. One could compare this to visiting a country where you don’t speak the language. You are at a strong disadvantage, but that doesn’t mean your means of expression is invalid.

    This is not a question of validity. It is also not a question of information processing. It is a question of functionality. Because of combat trauma my brain got a bit re-wired. I now cannot function at the level I used to. I am totally disabled. This doesn’t define me. However, it does impact how I relate to the world. It hinders me in my relationship to the world. It is my handicap. A handicap speaks to your relationship with the world. It does not speak about you.

    Sd: Rich, I don’t know what to make of the fact that you apparently have a standard pre-determined strategy for having a conversation with a disabled person. Why can’t you just talk to them? When you talk to an able-bodied person, do you go into it with a plan of how you’re going to “honor them for who they are”?

    Of course. When I speak to someone I listen. I respond to what they have to say. I talk about them not to them. With the handicapped person, I talk to them about their handicap because that handicap is part of what they have to deal with. They are comfortable with their handicap and I want them to know I am comfortable also.

    sam Coleridge: agree with matt and sd on this, rich. autism is a state of entrenched infancy, by and large. the brain is taking in the same sense data that ‘normal’ brains do, but lack the richness of the concept forming aspects of processing data, so see their world as discrete packets of information rich in detail but unable to be parsed into concepts we take for granted, like ‘mum’s face’ or ‘spot, the family dog’ – rather, each view of the world is novel.

    I agree with all of you about the nature of autism. Where we disagree is the implication. Autism makes them less functional in today’s world. My son is deaf. He was born so. For him deafness is quite normal. He gets along great in the hearing world. However, sometimes he has to tell people they need to alter their behavior a bit. He cannot follow group discussions. All discussions with him must be one-on-one so he can read their lips. In this sense he is less functional in the normal world than a hearing person is.

    When he was 5 he wanted to enter a spelling bee contest at the mall. His mother and I said no. He was deaf and we didn’t want to see him humiliated and hurt. A few days later we got a letter from the mall giving our son his number in the spelling bee contest. He had gone around us and sent in his own application. There were about 50 kids entered and he came in third. We stopped defining our son as deaf. He was just a normal kid with a hearing problem. We let him define who he is. When I speak to handicap people about their handicap, I’m allowing them to define who they are with that hindicap. I’m not doing the defining. Amanda is first and foremost a person. My son is a person. I am a person. It is this oneness of personhood that draws us together. I don’t have to accept her difference. I have already accepted her oneness. To accept her difference is to focus on her difference. She is not her difference. She is more than the rewiring that went on in her brain. Within this oneness we all are unique. But it is not the uniqueness that draws us together. It is the oneness. Amanda is a PERSON with autism. She is not an AUTISTIC person.

  10. #10 Caledonian
    November 8, 2007

    I agree with all of you about the nature of autism.

    Since no two people here seem to agree about the nature of autism, that’s quite a feat.

  11. #11 Ettina
    May 12, 2009

    “Amanda is a PERSON with autism. She is not an AUTISTIC person.”

    Does that mean she’s also a ‘person with female gender’ rather than a woman?
    Why should the presence of a disability be a challenge to seeing the person as they are? Not ‘autism embodied in a person’, or ‘a person who just happens to have autism but it’s not that important’, but as a person who is unique, who is a human being, and who fits among certain categories of people, including autistic people.

  12. #12 Anonymous Gamer
    August 1, 2010

    Amanda Baggs’ ‘handicap’ is not Autism, her handicap is psychogenic autism. There is plenty of evidence of that on the web if one wishes to look.