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Want to do something for Autism Awareness Month?

tigtog

This series of tweets from @twoscooters sums up the major division in autism activism – the parents of autistic children not listening to the opinions of adults living with autism based on their own life experiences, and too many media and medical organisations siding with those parents:


[Embedded image-text transcript: “LAPD officers who shot unarmed man with autism awarded millions in discrimination lawsuit”]

Listen to the voices of those who have lived autism from the inside, just for a change.

34 thoughts on Want to do something for Autism Awareness Month?

    1. [the shooting] doesn’t seem to have anything to really do with the fact that the victim may have been autistic

      They wanted to investigate him because he “was looking around suspiciously” while walking along the street and “manipulating something in his waistband area” – you say in a later comment that you know quite a few people with a range of autistic behaviours, surely you recognise those as fairly typical rhythmic/stimming tics?

      When the officers tried to stop Washington to investigate, he quickly approached them and seemed to pull something from his waistband, Assistant Chief Earl Paysinger told reporters at a news conference Saturday afternoon.

      Each officer fired once and Washington was hit in the head, police said.

      Washington’s eagerness to approach the police when they called on him to stop is again something I associated with typically “high-functioning” autistic behaviour – an anxiety to please and eagerness to cooperate with authority figures, which the police misinterpreted as aggressive intent.

      It seems to me that police ignorance about neurodiverse behavioural patterns had a great deal to do with this shooting.

  3. The shit I get for being autistic includes being bullied for not socializing like everyone else, living with the threat of certain people involuntarily institutionalizing me for being autistic, not finding even the slightest accommodations for my disability from most non-autistic people I know, and my mind being flooded with assumptions about my disability signifying mental and moral inferiority. Yet somehow the biggest purportedly pro-autistic organization, Autism Speaks, has decided that the best way to deal with the disturbing existence of autistic people is to…make lots of blue lights. I want basic respect, not pretentious bullshit from people who ultimately work to get rid of fellow autistic people one way or another. They can go fuck themselves.

    1. not pretentious bullshit from people who ultimately work to get rid of fellow autistic people one way or another.

      Cosigned on everything, except I wasn’t sure what you meant by this part. If you’re willing, would you mind expanding?

      I know Autism Speaks has all kinds of problems, but I’ve never heard anything approaching that type of violent rhetoric from them.

      1. I assume Aaliyah is referring to their goal of “curing” autism. For many autistic people, their autism is an essential part of who they are. To “cure” it would be basically to replace them with a completely different person. (Cf. Stepford Wives.)

        1. I don’t think any (non-fringe) researchers are trying to cure autism in adults; all the research I know of is trying to discover the cause(s) and address them at the fetal stage. I certainly could be wrong, though!

        2. No, they aren’t really trying for a cure, they’re mostly trying to claim that autism has “taken away” their children and replaced them with aliens (yep, aliens) and I have seen some really creepy murderous and Otherising rhetoric emerge from AS (including a board member making a vid about wanting to murder her autistic child). While they haven’t come right out and said they want to engage in genocide, I honestly think that Aaliyah’s not wrong – they would advocate it if they socially and legally could.

  4. Kinda side-eying that claim re: neurodiversity; the idea that there’s no such thing as a ‘normal’ brain might have utility in some cases, but as someone who has lived with a paranoid schizophrenic, not to mention has relatives with Alzheimers, I’m also very comfortable with the idea that at least some neurological states are non-preferable (and should be treated if possible).

    On a related note, I think the a lot of the rhetoric used by autism advocates to separate autism from mental illness is deeply ablest. I hear a lot of things like “well, we shouldn’t call autism a mental illness, because we don’t want to shame autistic people,” which, no, fuck you. To be clear, I’m not saying autism should be classified as an illness (I have zero medical qualifications), but that’s a terrible, offensive argument for why it shouldn’t be.

    It seems very much to reflect the claim by some Deaf advocates that deafness isn’t a disability, which is also often (though certainly not always) stated in ablest terms; we don’t want to have a disability, because disabled people are weak/useless/gross, where as we are able to be functioning members of society with our own communities/culture.

    1. A decent part of the problem is the tendency to refer to someone as “autistic” rather than “being somewhere on the autism spectrum” or “exhibiting some traits associated with autism” or whatever. It’s too small a term to encompass such a large mental ocean.

      I mean, my friends severely autistic kid is very far from OK. He is incredibly disabled. He requires constant supervision and will probably require it for his entire life.

      OTOH, my mildly-aspie math/science geek friends have a “total deviance from normal”** that is less than a ton of other folks who are just considered “eccentric.” And they function better than many people.

      Those groups are not at ALL the same and it’s difficult to continue to use one word to define them both.

      (**I don’t think it’s useful to pretend that there’s no such thing as broad neurotypicality. We have a lot of common traits and means. I do think it’s useful to recognize that it actually has to do with many axes; that everyone has some variance; and so on.)

      As for the “medical diagnosis” issue: A lot of that comes from the way that we handle assignment of special benefits in the USA.

      Only if it’s a “disability” or a medical issue, do you qualify for assistance, special treatment, extra legal protections, extra money, and so on.

      You can have a law which protects someone with autism no matter where they are on the spectrum… but you can’t protect them unless you define the class. And that requires a diagnosis. Similarly, if you only want to protect people with more serious problems, you need to define that line as well.

      In the US, the difference between a “struggling student who wants more help” and a “struggling student who can legally force the school to help” is often the presence/absence of a medical diagnosis of some kind.

    2. I can’t say I’ve heard people make arguments like this, although I won’t doubt that there are people who make them — I’ve heard clueless-er stuff being said.

      What I’m mostly hearing, both for non-neurotypical people and for deaf people, is that they should not be viewed and treated simply as defective versions of “normal” people, and that they deserve to have a say in how they are treated.

      In the case of deaf people, they argue for recognition of deaf culture and specifically that deaf children should be taught signing and connected with the deaf community.

      In the case of people on the autistic spectrum, they argue for recognizing that the autism is a part of who the autistic person is and not simply a deficiency, and argue against assuming that “curing” autism is necessarily a desirable goal.

      1. In the case of deaf people, they argue for recognition of deaf culture and specifically that deaf children should be taught signing and connected with the deaf community.

        Which I’m on board with. But many also argue that deafness isn’t a disability specifically on the grounds that deaf culture exists, which is a pretty nasty shot at every other disabled person in the world. I mean, leaving aside the linguistic incoherence.

        In the case of people on the autistic spectrum, they argue for recognizing that the autism is a part of who the autistic person is and not simply a deficiency, and argue against assuming that “curing” autism is necessarily a desirable goal.

        I have a tougher time with the latter part of this one, but this thread might not be the appropriate place for a longwinded discussion thereof.

        1. I think there’s a conversation to be had on the diverse meanings disability has, as a concept. I think it’s fair to say that a group with their own language, communications strategies (and related social norms and taboos) is a subculture, and as such only socially disabled (ie people are not willing to acknowledge their diversity). In that sense, they’re far more analogous to, say, lesbians or Jamaicans, to pick two random groups, than to people with multiple sclerosis or fibromyalgia. Personally, I call myself disabled because goddamn, I’d give all my teeth for a cure. And that’s very much a medical model of disability. But they are still both disabilities…but one of them also kind of isn’t, and people in the group could identify either way. I don’t think there’s such a thing as “fibromyalgia culture” (unless it involves a lot of large groups being in the fetal position from pain, sacrificing spoons to the Medications And No More Social Life gods) but I can definitely see where there’s a Deaf or a Blind culture.

        3. I think there’s a conversation to be had on the diverse meanings disability has, as a concept. I think it’s fair to say that a group with their own language, communications strategies (and related social norms and taboos) is a subculture

          I can definitely see where there’s a Deaf or a Blind culture.

          Absolutely. To be clear, I’m not arguing against the existance of Deaf culture; I’m arguing that it’s existence is irrelevant to whether the inability to perceive sound is a disability. As such, I’m also side-eying the passionate attempts to separate deafness from the term ‘disability,’ which to me seems to have profoundly ablest roots. Why would it matter so much, unless you thought a disability was something to be ashamed of?

          and as such only socially disabled (ie people are not willing to acknowledge their diversity).

          That’s the part I can’t get behind. Does someone by themselves on a desert island have a better or worse chance of surviving with or without, say, the ability to see? Or walk? How is someone only ‘socially disabled’ when that disability doesn’t vanish in the absence of society?

          In that sense, they’re far more analogous to, say, lesbians or Jamaicans, to pick two random groups, than to people with multiple sclerosis or fibromyalgia.

          How does this make any sense? Being Jamaican is the result of subjective human sociopolitical groupings. Being deaf is the physical state of be unable to perceive sound. If you were born, lived, and died without ever meeting another human being, you’d still be deaf.

    1. This Forbes article provides a reasonable summary of such groups, djf: If A Parent Murders An Autistic Child, Who Is To Blame?

      It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “no supports” should certainly be pitied and not judged harshly for killing the “monster.”

      There are “autism advocacy” organisations whose entire rationale seems to be convincing parents that they are victims of a vast conspiracy that is hiding “the truth” about autism, and that if those parents spend vast sums of money on dangerous and unproven therapies they can cure their child’s autism, or that if those parents donate vast sums of money to the organisation’s “investigators” then they will one day receive even vaster sums in compensation for the damage that the conspiracy caused to their child. It tends to be parents who have been manipulated by such organisations who end up feeling that they have no option but to kill their child, and then it is those organisations who work very hard to paint the murderous parent(s) as a victim of the heartless establishment that just refuses to tell the world “the truth” about autism.

      1. This Forbes article provides a reasonable summary of such groups, djf: If A Parent Murders An Autistic Child, Who Is To Blame?

        It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “no supports” should certainly be pitied and not judged harshly for killing the “monster.”

        There are “autism advocacy” organisations whose entire rationale seems to be convincing parents that they are victims of a vast conspiracy that is hiding “the truth” about autism, and that if those parents spend vast sums of money on dangerous and unproven therapies they can cure their child’s autism, or that if those parents donate vast sums of money to the organisation’s “investigators” then they will one day receive even vaster sums in compensation for the damage that the conspiracy caused to their child. It tends to be parents who have been manipulated by such organisations who end up feeling that they have no option but to kill their child, and then it is those organisations who work very hard to paint the murderous parent(s) as a victim of the heartless establishment that just refuses to tell the world “the truth” about autism.

        I don’t know if you felt this way, but I couldn’t help but feel that both ‘sides’ in this argument are giving the mother a ‘pass.’ The one side blaming it on her ‘monster’ of a child and the other side blaming it on the monstrous advocacy groups.

  7. ludlow22: I would be interested in hearing your views.
    This is what I do not understand when people talk about curing autism: My brain is as it is, already developed. There is no part you could point to and say There it is, there’s the Asperger’s; fix that and the rest will work – how? Normally? If normally is different from how it works now, I would rather it not be normal.
    But what about the children? Would it be better if they didn’t have to learn the more common forms of human interaction explicitly rather than know them implicitly? Well, probably. It would save a lot of time. On the other hand, if they mostly interacted with other people on the spectrum it wouldn’t be so much of an issue (though it is a very great error to assumed that those on the spectrum necessarily get along with each other). Maybe the goal should be for the neurotypical to learn how to communicate with the rest of us, not the other way around.
    As to whether autism can be disabling, one could say the same about nearly any personality type taken to the extreme (using an informal phrasing here, not medical). That doesn’t seem to be a justification for deciding that the personality types themselves need to be cured.

    1. This is what I do not understand when people talk about curing autism: My brain is as it is, already developed. There is no part you could point to and say There it is, there’s the Asperger’s; fix that and the rest will work – how? Normally? If normally is different from how it works now, I would rather it not be normal.

      To my knowledge, nobody serious is working on ‘curing’ (not sure that’s the right word, so feel free to suggest a better substitute) autism in adults. Research *is* being done on identifying the causes of autism, with an eye towards potentially eliminating the factors that cause people to have autism in the first place. I think that’s a really important distinction.

      On the other hand, if they mostly interacted with other people on the spectrum it wouldn’t be so much of an issue (though it is a very great error to assumed that those on the spectrum necessarily get along with each other).

      I think part of the problem here is that the public discourse around autism is shaped largely 1) by non-autistic people like the assholes at Autism Speaks, but also 2) by the subset of autistic people who aren’t impaired, or aren’t seriously impaired. I’m not sure that just because they’re both on the spectrum, someone with mild Asperger Syndrome has special insight into the life of someone who is entirely unable to use language, exhibits extreme self-injurious behaviors, etc.

      As to whether autism can be disabling, one could say the same about nearly any personality type taken to the extreme (using an informal phrasing here, not medical). That doesn’t seem to be a justification for deciding that the personality types themselves need to be cured.

      If autism was just a ‘personality type,’ I’d agree with you. I don’t think obsessive-compulsive or repetitive behaviors, self-injury, inability to use language, extreme fear/terror at innocuous objects, etc. can be dismissed as just a quirk of personality, and I don’t think that the existence of people on the spectrum with no significant impairment can be used to dismiss how serious autism can also be for other people.

      1. See, that’s why I said I was speaking informally. I would rather not use specific personality types as examples because they’re not part of my internal experience. To use one that is: It’s normal to be nervous in certain situations – job interviews, public speaking. It’s not normal to be so anxious that making a telephone call requires an hour or more of preparation. That’s why I’m on medication for anxiety: the degree makes the pathology.
        It’s interesting that you put repetitive behaviors together with obsessive ones – not the same thing at all. When I am standing in line or waiting for a walk light I often rock or pace, because it feels good to do so. Repetitive behaviors can be useful like that.

        1. It’s interesting that you put repetitive behaviors together with obsessive ones – not the same thing at all. When I am standing in line or waiting for a walk light I often rock or pace, because it feels good to do so. Repetitive behaviors can be useful like that.

          I only put them together because they both had the word ‘behavior’ in them; I don’t mean to imply a medical connection. That said, some repetitive behaviors can be harmful, which goes to my larger point- the fact that some people on the spectrum are absolutely fine doesn’t mean autism can’t also be incredibly problematic for other people.

          See, that’s why I said I was speaking informally. I would rather not use specific personality types as examples because they’re not part of my internal experience.

          I understood what you meant, I just disagreed with this:

          On the other hand, if they mostly interacted with other people on the spectrum it wouldn’t be so much of an issue

          because that erases the people with autism who don’t just happen to socialize differently.

        2. Mainly speaking of my own children there, as they’re the only ones I have personal knowledge. The lessons in social behavior are for now very necessary, but it feels like teaching them code – and the younger one tends to treat it as code, as well. That is, he tends to think of “please” as if it were an actual magic word that, if he says it, will automatically get him what he wants.

        3. I’m not sure learning social manners as a code is necessarily a bad thing. I think many people use please as a magic word with various interpretations on nuance.

      2. To my knowledge, nobody serious is working on ‘curing’ (not sure that’s the right word, so feel free to suggest a better substitute) autism in adults. Research *is* being done on identifying the causes of autism, with an eye towards potentially eliminating the factors that cause people to have autism in the first place. I think that’s a really important distinction.

        Um — why is that an “important” distinction?

        Either way, you’ve decided that society would be better off without autistic people. Since for autistic people, at least for those high-functioning enough to understand what this means, their autism is an essential part of who they are, this amounts to saying that society would be better off without them. It’s simply a “kinder, gentler” version of Autism Speaks’ agenda. Is it so surprising that a lot of autistic people regard this as being like genocide?

        1. (Sorry — blockquote fail. The second nested blockquote shouldn’t be quoted at all. Can someone fix this?)

          [Done ~ tt]

      3. I’m not sure that just because they’re both on the spectrum, someone with mild Asperger Syndrome has special insight into the life of someone who is entirely unable to use language, exhibits extreme self-injurious behaviors, etc.

        But neither does a neurotypical. Either way, we’re hearing the perspective of people who aren’t actually that disabled.

        The difference is that the policies that neurotypicals are making affect high-functioning autistics as well. High-functioning autistic people are being shut out of decision-making that affects them.

        Among other things, any “cure” or eugenic test for autism will affect high-functioning autism as well as low-functioning autism.

        1. Among other things, any “cure” or eugenic test for autism will affect high-functioning autism as well as low-functioning autism.

          I don’t quite follow; does this refer to prenatal testing?

        2. I don’t quite follow; does this refer to prenatal testing?

          I wasn’t being that specific; it could include that, depending upon what the researchers come up with. I was basically speaking of any approach to eliminate autism from the population. This might take the form of a post-natal cure, or some sort of pre-natal correction, or (IMHO the most likely) some way of detecting autism during pregnancy so that autistic fetuses could be aborted if the parents choose, much the way we now handle Down’s syndrome.

          Since most current forms of “advocacy” lump all levels of autism together and demonize them all, I would expect their cures or prevention to target both low- and high-functioning autism.

  8. As someone with Asperger’s, I can say with confidence that I have no idea what it is like to be a low-functioning autistic. I have less idea of what it is like than I do what it is like to be neurotypical, mostly because neurotypical people have written so much about the experience of being NT that I can somewhat accurately model what it is like to be them and make mappings to my experience. I cannot do this with low-functioning autistics because they cannot tell me what it is like to be them.

    And I can imagine that probably the life of a low-functioning autistic would be better if there were a “cure” for their autism. But I also know I can’t talk to them to find out. And that I feel, very strongly, that Aspergers has made me who I am, that I would be a completely different person without it, and talking about curing “autism” or preventing children from being born with “autism”, talking about the entire spectrum, feels like people want to erase me. That the abilities I have that NT people don’t have are worthless to them (or potentially traits they literally want no one to have, because I have a much greater resistance to peer pressure and social manipulation than most NT people), and the disabilities I have in relation to NT people, that I can get around to the point where most people can’t even tell I’m an Aspie and I wasn’t diagnosed until I was in my 40’s, are so terrible they think I shouldn’t have been born.

    What if, instead of trying to cure “autism”, they worked on curing mental retardation and aphasia? I have heard from many autistics on the Internet who can type but not speak, and they can express their experience of life in text as well as I can, or you can, or anyone. If that ability could be given to all autistic people, if everyone had the ability to say “This is what my life is like” and “I do want to be different” or “I do not want to be different”, then maybe it might be worthwhile to start talking about curing autism, because then we could hear from the people whose opinion currently can’t be consulted. But from my perspective… when the people who can talk about what it’s like mostly agree that they don’t want to be changed, can we really assume that the people who can’t talk about what it’s like have a burning desire to be turned into normal people?

    I mean, I’m of two minds about it, because I have a lot more abled privilege than a low-functioning autistic. I’m so close to the “normal” end of the spectrum that it took thirty years before I even suspected I was an aspie. So maybe I don’t have the right to speak for people who can’t speak. Maybe they really do want to be “normal”; maybe they really are suffering so much they wish they hadn’t been born. But I can’t say that for certain, because no one can talk to them. And I can say that every autistic person I have talked to, including the ones who can’t speak but can type, does not want to be “normal”. So how could I assume that the people who can’t communicate do want this?

    How about, instead of curing “autism”, we find ways to treat symptoms that might well make people’s lives miserable, like the inability to talk or systemic poverty because they cannot hold down a job or anxiety and sensory integration issues so terrible they basically can never go out in public? None of these traits are shared, equally, by all on the autistic spectrum, therefore we might be able to do something about them without curing “autism”. And such techniques would likely help people who aren’t autistic but aren’t neurotypical either, like people with stroke-induced aphasia. But no, these asshats are all about “cure autism!” like the problem is autism and not that there are individual specific disabilities that many people with autism have that make life hard for them.

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