Online movement for autistics' rights

Wired's got a long feature on Amanda Baggs, a woman with autism who doesn't speak, but who uses video and online forums and MMOs to make an eloquent case for autism as a different -- but valid -- style of cognition, and argues for the rights of people with autism to be recognized on their own terms. The article looks into the long-held belief that autism and retardation are tied together and concludes that this just isn't true -- rather, that people with autism have been incorrectly classed as retarded for generations.

Baggs is part of an increasingly visible and highly networked community of autistics. Over the past decade, this group has benefited enormously from the Internet as well as innovations like type-to-speech software. Baggs may never have considered herself trapped in her own world, but thanks to technology, she can communicate with the same speed and specificity as someone using spoken language.

Autistics like Baggs are now leading a nascent civil rights movement. "I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.

This movement is being fueled by a small but growing cadre of neuropsychological researchers who are taking a fresh look at the nature of autism itself. The condition, they say, shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different – an example of the variety of human development. These researchers assert that the focus on finding a cure for autism – the disease model – has kept science from asking fundamental questions about how autistic brains function.

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  1. I tend to view autism as a sort of concentrated introversion, which itself is reviled in American society. It could be an evolutionary advance which mundanes just don’t understand yet.

  2. As the father of an autistic child, I have to say that I often wondered if it was simply another evolutionary path for humans. Many autistic persons are light years ahead of “normal” people in the way they see and approach many problems, as well as extremely intelligent. As for “weird”, that is a purely subjective thing, as I see many so called normal people as weird. And weird isn’t necessarily a bad thing, is it? It’s merely different, and that, to me, is what makes life interesting and wonderful.

  3. While I’m definitely sympathetic, I don’t think it’s good accurate to say that autism is simply a “different way of thinking”.

    One of the most prominent features of autism is a lack of empathy for others. This is likely caused by a severe reduction in mirror neurons.

    Lacking mirror neurons also changes the way that autistics have to acquire new information. In that sense, yes, it is definitely a “different way of thinking”.

    I really can’t see autism as an evolutionary step. At the very least, I hope that the future of our species isn’t one that lacks empathy for others.

  4. do “autistic” people wish to belong to the group of humans calling itself “normal”?

    Please answer. (is anyone making sure this thread and BoingBoing come to Amanda Baggs attention?)

  5. as someone who is autistic (asberger’s to be exact) I’m not sure I’d see it asan “evolutionary step.” either, though perhaps looking at it as not a disease to be cured is a very good thing in my mind.

  6. What a brilliant article…incredibly thought-provoking on so many levels. Many thanks for pointing it out.

  7. There was an autistic kid in school who knew everyone’s birthday in school, and would say while passing in the hall, “Happy Birthday.”

    He had many other social problems as well.

  8. I saw a great movie recently from Belgium called “Ben X” in which an Aspergers kid finds his voice (and a friend) via MMORPG (ArchLord specifically). Very well done, and I hear they’re remaking it for English audiences. Should be interesting.

  9. Her “different way of thinking” keeps her from being able to take a shower on her own. Sounds like a handicap to me.

  10. “Normal” people are neurotypical; there are a broad range of opinions in the autie/aspie community as to the value of trying to fit in with neurotypicals.

    Go check out the discussion boards at wrongplanet.net for a huge community of autie/aspie types. “Neurodiversity” is the rallying cry. google the term for more info.

    As for the “lack of empathy” issue – that too is highly disputed, as is just about every other characteristic assigned to the “disorder.”

  11. It has long been theorized that autistics typically do not have an intellectual deficit, but instead interact with the world in a completely different way than mundanes do.

    Unfortunately, this mode of interaction is rather ineffective in this world that mundanes have built for themselves.

    Another aspect of this theory is that autistics lack the requisite sensory filtering and as a result experience the world in detail that is overwhelming. Most autistic behaviours, therefore, would be strategies to distract and distance themselves from the unending barrage of sights, sounds and sensations that mundanes shut out as a matter of course.

  12. Kyle Armbruster
    There was an autistic kid in school who knew everyone’s birthday in school, and would say while passing in the hall, “Happy Birthday.”

    He had many other social problems as well.

    I love how telling somone “Happy Birthday” is considered a “social problem”. Seeing behavior not lockstep with their own as a social disorder is a disability of the “normal”.

  13. Oliver Sacks’ “An Anthropologist on Mars” is a good intro to some of the aspects of autism (the title is a quote from a successful woman with Asperger’s describing how she felt among other humans); it opened my eyes to the “otherness” of autism.

  14. The claim/message is that autism is a different way of thinking (to some extent). It also has somewhat of a defensive tone regarding the way “normal” people see people with autism. While this is well founded response to the way society sees autism, it also reveals what someone else was mentioning the classic lack of empathy for others aspect of autism.

    The “normal” person view of autistic people is based off the fact that people like her need help taking a shower and cooking a meal.

  15. I wonder about autism in other species– do wild animals experience it? Or is it by it’s very nature something that applies only to humans because of our higher mental reasoning? And if it happens in animals, how does it effect survival (does it act as an evolutionary mechanism?)

  16. Didn’t I see a study flowing around this year about autism, and how it is caused by several groups of genetic defects that all have some effect on how our body makes/produces/uses certain short-chain fatty acids, which normally reduce swelling of the brain? There was something about being able to identify autistics almost immediately – instead of waiting for them to hit the age of ~3 – with a simple piss-test, and about treating (not curing) them with a complex solution of all the short-chain Fatty Acids that they have a deficiency of. Each person’s treatment would have to be a different mixture, because of the diversity of the underlying genetics.

  17. It may be that the autistic brain is not defective but simply different — an example of the variety of human development.

    Calling autism (or even Asperger’s) developmental variation or an advancement in evolution suggests (to me, at least) that it’s adaptive. I don’t see how impairment in the ability to encode emotional information is adaptive, from a social interaction perspective or an evolutionary perspective, insofar as emotions are an effective way to quickly convey information about a situation or environment. Put bluntly, if an autistic caveman couldn’t interpret the meaning of someone shouting “danger!”, he’d get eaten by creatures.

    I can understand the desire to reduce the stigma involved with autism, but I’m not sure that claiming it is mere difference or even superiority is the best way to go about it.

  18. Put bluntly, if an autistic caveman couldn’t interpret the meaning of someone shouting “danger!”, he’d get eaten by creatures.

    Maybe that’s the point. We still talk about adaptation in terms of saber-toothed tigers. Maybe they’re adapting to survive a world of rampaging data manipulation.

  19. Maybe that’s the point. We still talk about adaptation in terms of saber-toothed tigers. Maybe they’re adapting to survive a world of rampaging data manipulation.

    I don’t see how the ability to encode emotional information is any less important in a technological society than it is in a pre-technological society. Making an evolutionary argument requires that the difference be adaptive, and I don’t see how the loss of an entire data stream is any more adapative in an age where the number of possible data streams has increased.

  20. I’m not making an argument that all autistic people are übermenschen (actually I’m not making an argument at all, just tossing out ideas), but evolution has about a million misses for every hit. I’d hate to see us fail to notice and foster a hit when it shows up.

  21. My brother is autistic, one in 150 or one in 70 boys.
    20 years ago or so it was one in 25,000. A strong part of me feels we as a society have done something WRONG and we have altered these children in some way. Im not a doctor but I have seen a lot of them in the last few months and I can tell you they dont know what autism is either. My mother knows a women who’s daughter was the most severe case of autism her peadiatrition had seen, self harm rocking tantrums that lasted 3 hours and with intensive therapy she is indistinguishable from ‘typical’ kids at the age of 13.

  22. @william in seattle: One of the most prominent features of autism is a lack of empathy for others. This is likely caused by a severe reduction in mirror neurons.

    Citation? (for the second statement, please)

    One alternate explanation is that many tests of empathy use fake emotions – actors, drawings and/or dolls – which are targeted at neurotypicals. If the autistic perception is different, it’s plausible that these fakes are simply less convincing and therefore elicit less empathy.

    Similarly, in person, if a teacher smiles at one child while worried about the whole class or, conversely, frowns to scold while trying to hide amusement at the child’s behaviour, the resulting expression can be confusing to the autistic if the pretence is tuned to fool the neurotypical perception. Even back in the 1940s, heavily autistic children have been described as recognising (and reciprocating to) those who truly mean well by them, who give them true understanding and genuine affection; if they are not fooled by the conventional fakes, then it can be a problem, but it’s hardly a deficit.

  23. While I’m definitely sympathetic, I don’t think it’s good accurate to say that autism is simply a “different way of thinking”.

    One of the most prominent features of autism is a lack of empathy for others. This is likely caused by a severe reduction in mirror neurons.

    Lacking mirror neurons also changes the way that autistics have to acquire new information. In that sense, yes, it is definitely a “different way of thinking”.

    I really can’t see autism as an evolutionary step. At the very least, I hope that the future of our species isn’t one that lacks empathy for others.

    Her “different way of thinking” keeps her from being able to take a shower on her own. Sounds like a handicap to me.

    I have to agree with these statements. While autism is definitely not the same as retardation, it is a disability. It’s downright insulting to ignore this fact, to both “normal” people and to autistic people. It’s a lie to make everyone all feely-goody and warm’n’fuzzy.

    Sure, it may, technically speaking, be a “different way of thinking”, but not in way you’re thinking it is.

  24. Homosexuality isn’t “adaptive” either. In fact, it’s less adaptive than autism, since autism doesn’t affect reproductive ability (or at least, not consistently), whereas a strictly homosexual lifestyle negates the possibility of reproduction except by virtue of medical intervention.

    And yet, few people these days view it as being a maladaptive handicap. Just not one that is reproductively adaptive for those specific people (although there is some speculation that it’s the result of reproductive adaptations in either the mother or the entire female genetic line that produces it).

    Yes, I realize that some autistic people have issues which cause far greater problems than homosexuality does. But then again, I know some perfectly “normal” people that I wouldn’t trust to shower or cook for themselves without messing it up, either.

    Perhaps if we knew more about how autistics thought and responded, we could find ways to teach them to take care of themselves in ways they can understand. As it stands, we try to teach them in a language that’s impenetrable to some of them. If you try to teach a Chinese speaker how to use a piece of technology by instructing them in English, they’re going to need help, too. Nothing to do with their intelligence or learning capacity.

  25. I am myopic and in other times would not have survived or been a poor, blind beggar. However I like to think ours is a better world that makes accommodations to and expends resources for my myopia.

    Not that long ago those with downs syndrome were simply institutionalized. They were treated horribly and lived without reaching their true potential. Today they can live far better lives through intensive therapy. We are all better off for that even if treating them does consume resources we might have used in other ways. Third world countries can’t afford to and that is so much the worse for them.

    BTW, most of the gays I know have kids. It is only a very small minority, %3, who are exclusively homosexual. And they certainly contribute to society as the entire history of the arts reveals. Who’s to say that’s not adaptive?

    I think we can make some room for a few more. So what if they wouldn’t have survived in a hunter gatherer society, neither would I. The question is are we better off as a society with the addition of those with some pretty unique talents. I think we are.

  26. I’m glad to see, along with the ignorant and fearful remarks already made, some thoughtful and accurate ones.

    There is no autism epidemic, any more than there is a cure. There is a difference is diagnostic criteria, which would undoubtedly include vanity diagnoses for parents keen on having a child they can feel saintly about.
    People do not grow out of autism, they learn how to cope within the framework of a world that is mostly not like them.
    I’m the mother of an autistic son. We went through a very long stage of being told and taught that every behavior of his that I found charming was a marker of terrible tragedy and needed to be eliminated.
    Until I stopped buying into that way of thinking, we were in hell, because I spent all my time trying to squash those behaviors, and he spent a lot of time being confused and hurt.
    My son is no more a tragedy than a dog is a tragic failure at being a wolf. He’s a different human, not a defective one.

    I think Baggs has a lot to teach everyone. Not just most of the worlds, but in helping auties gain a sense of self and self-acceptance.

  27. I expect there are a number of autistic people currently warehoused in care because they were too much for their families (or in the way of money). Will computer access free their lives? Is someone not just championing them but also guarding this right? There could be people who could finally effectively communicate – if given the honest chance.

  28. @Sabik: “Citation? (for the second statement, please)”

    http://www.sciam.com/article.cfm?articleId=000B7F38-893D-152E-88E283414B7F0000

    It’s pretty new stuff – but if you search for “mirror neurons” and “autism”, it’s the latest theory and the only one that has a physical neurological link.

    Mirror neurons allow us to literally feel someone else’s pain. When we see someone hurt themselves, or see someone who is clearly emotionally upset, mirror neurons are triggered in the observer’s mind that are analogous to the other individual’s mental process.

    This also allows us to learn through observation. You see someone going through a step-by-step process, and mirror neurons allow us to learn by having analogous neurons triggered.

    But since autistics don’t have the same mirror neural activity, they don’t learn the same way, and they also don’t have the same empathetic response.

    Yes, there is no cure for autism, but it is a growing problem that needs to be resolved. It might be that there is an environmental factor that’s preventing the correct development of mirror neurons.

    It doesn’t mean that autistics should be shamed or outcast, but the notion that it’s simply a “different way of thinking” is absurd.

  29. @Sabik: “Citation? (for the second statement, please)”

    http://www.sciam.com/article.cfm?articleId=000B7F38-893D-152E-88E283414B7F0000

    It’s pretty new stuff – but if you search for “mirror neurons” and “autism”, it’s the latest theory and the only one that has a physical neurological link.

    Mirror neurons allow us to literally feel someone else’s pain. When we see someone hurt themselves, or see someone who is clearly emotionally upset, mirror neurons are triggered in the observer’s mind that are analogous to the other individual’s mental process.

    This also allows us to learn through observation. You see someone going through a step-by-step process, and mirror neurons allow us to learn by having analogous neurons triggered.

    But since autistics don’t have the same mirror neural activity, they don’t learn the same way, and they also don’t have the same empathetic response.

    Yes, there is no cure for autism, but it is a growing problem that needs to be resolved. It might be that there is an environmental factor that’s preventing the correct development of mirror neurons.

    It doesn’t mean that autistics should be shamed or outcast, but the notion that it’s simply a “different way of thinking” is absurd.

  30. Several of the comments have included the phrase “mirrored neurons”. My son although not formally diagnosed with Autism or Ausbergers, has a lot of quirky behaviors. We are looking into the Brain Balance program this summer. http://www.brainbalancecenters.com Is there anyone out there who is familiar with it? They have great testimonials, but I am looking for people who have been there who are not being paid to say it is great.

    Thanks

  31. I was recenly diagnosed as having Asperger’s syndrome, or as being a high-functioning autistic. Social skills are a mystery to me, and in the course of my life I have had few friends. Yet I am also very squeamish about seeing enactments of pain on the screen, and I must often close or avert my eyes. I don’t want to gauge my own capacity for empathy, but other people have given me varying estimates of it. So I’m skeptical about my supposed inability to feel others’ pain.

    Furthermore I am not trope-deaf; not only do I understand metaphors, I have even had to explain some of them to neurotypicals.

    I once asked a psychologist about generalizations about autistics. She said that autism is a spectrum; that’s why there’s such a term as “autistic-spectrum disorder.”

    And yes, since my inability to make friends has left me lonely, if there were a cure for autism I’d jump at it. Let the autism-liberation people put that in their pipes and smoke it.

  32. the possible link between vaccines and autism

    It’ll be interesting if it proves to be true. Unfortunately, a lot of parents would rather have many children sick or dead by inaction than suffer the guilt of a single sickness or death by action. Guilt prevention is frequently a bigger motivator than disease prevention. Those childhood diseases killed and disabled a lot of kids.

  33. @ANONYMOUS : “So I’m skeptical about my supposed inability to feel others’ pain.”

    It’s called ASD, or Autism Spectrum Disorder, specifically because not everyone has the same traits. It’s a range from barely noticeable to severe.

    For example, not all individuals with autism/Asperger’s have compulsive behaviors, like counting excessively or stacking objects.

    But that doesn’t mean that those two traits aren’t two defining traits of autism in general.

    Lacking empathy is definitely a trait of autism – not everyone with autism has it, and not everyone without empathy is autistic – but it’s just as important of a characteristic.

    It comes out in different ways – an autistic individual might be able to empathize with physical pain, but has problems understanding the emotional wants and needs of others around them and ignoring social cues since they have problems conceiving of other minds.

  34. Mercury poisoning is a boogeyman.

    I suggest to one and all, but especially the inexperienced experts here, that they read the blog of Autism Diva:
    http://autismdiva.blogspot.com/

    Her writing is extremely well-researched, and she exposes Cure Autism Now, Defeat Autism Now and the delightful Indigo-Mom-Turned-Google PhD Jenny McCarthy.
    She also parses out the numbers of “mercury poisoning” research, and demonstrates that it comes up lacking, to say the least.

    I also have to wonder how many people tossing out the conventional wisdom about autism actually have a near relative (like a child or parent), or a good friend with autism.
    Knowing someone with autism is emphatically not the same as being related or a good friend of same.
    I can tell you this because I have lived with auties my whole life.

  35. I dismissed the vaccine mercury thing too. The article quoted above seems to be new information though. Have you read it?

  36. Hmmmm…… is it possible that some of you, although apparently intelligent, suffer from the mental deficiency of Closed Mindedness?

    I wonder if that is curable by treatment with a complex solution of short-chain Fatty Acids

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