autism is a disorder

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Freddie

Freddie deBoer used to blog at lhote.blogspot.com, and may again someday. Now he blogs here.

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30 Responses

  1. Avatar Roberto
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    says:

    As the father of an autstic son, I couldn’t agree more. There are many things about David that are wonderful and that I wouldn’t change for anything. But the limitations that being autistic have imposed on him, regardless of whether he is or isn’t aware of them as limitation, aren’t among them.

    This has nothing to do with what it means for me or his mom: David will likely never go the prom, perhaps never fall in love as you and I understand it, or marry, never have children and never experience many of the truly human experiences we take for granted.

    I adore him which is why thinking about this brings tears to my eyes. You’ll excuse me: it’s time to help with his homework.Report

  2. Avatar MikeF
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    says:

    Fantastic post. I first read about the movement to normalize autism as a difference rather than a disorder a few days ago, and was deeply unsettled but not quite able to articulate why. This explains it perfectly; and the point about the people closest to an issue not being the best-informed or most rational about the issue can’t be made enough.Report

  3. Avatar Dennis Sanders
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    says:

    Well, I think I need to speak up as someone that has an autism spectrum disorder.

    About a year ago, I was diagnosed with Aspergers Syndrome which as I stated is an autism spectrum disorder. I have to say that when I found out that I was autistic, I felt a sense of relief. For a long time, I was having issues keeping a job and in dealing with people. But now knowing what I had, made me aware and able to deal with things.

    I see a counselor monthly who helps me in finding ways to negotiate the world around me. A lot of it means having to learn things that people who don’t have Aspergers or autism learn instinctively. Also telling my employer has helped them understand me more and try to make work…well, work for me.

    As to whether or not, I see it as a disorder or a difference, I think it is a disorder, but I also think that I don’t need a cure as much as need assistance in managing the world around me and for others to understand me. But that is my view and depending on the situation, it might not work for others who might be severely affected with autism.

    On the other hand, a lot of us who have Aspergers or High Functioning Autism, don’t feel or desire to be “normal.” What you fail to understand is that many of us have tried to fit in and tried hard to pretend. At some point, you get tired of pretending.

    I guess my whole point is that you need to really understand the wide range of opinions concerning autism, especially among those of us who are adults with autism, instead of lumping us all into one basket and deciding what is best for us. Autism might not be the same as sexual orientation or skin color (I am a gay African American, by the way), but I do know that there has been a sad history of treating those who have disorders (such as those with mental illness) with little respect and deciding what’s best for them without taking their thoughts or interests at heart.Report

  4. Avatar E.D. Kain
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    says:

    Thanks for that, Dennis. I think that really compliments Freddie’s piece, actually. I think we run the risk, in fact, of not truly understanding disorders if we simply accept them as “differences” because that implies that it should be nobody’s business, that we should simply “tolerate” it. Sometimes tolerance is not enough. Sometimes it is even, perhaps, just a little condescending…Report

  5. Avatar Freddie
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    says:

    On the other hand, a lot of us who have Aspergers or High Functioning Autism, don’t feel or desire to be “normal.” What you fail to understand is that many of us have tried to fit in and tried hard to pretend. At some point, you get tired of pretending.

    I’m not asking you to fit in, or to try to pretend. Wouldn’t do that.

    I guess my whole point is that you need to really understand the wide range of opinions concerning autism, especially among those of us who are adults with autism, instead of lumping us all into one basket and deciding what is best for us.

    I am not deciding what is best for you, nor am I insisting that you undertake any particular kind of treatment. I am advocating that as a society we respect medical science and our conception of what it means for a condition to be a disorder and continue to confront autism as a negative condition that we should work to overcome.Report

  6. Avatar Landru
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    says:

    Issues surrounding autism tend to be burdened with overgeneralization. The only related overgeneralization that I’ve found to be meaningful is that some people with autism-spectrum diagnoses function reasonably well; others don’t. There is, as you say, a nontrivial portion of the population affected by the autism spectrum that is desperately committed to finding causes and blame, and to advocating easy and absolute treatments. That emotion complicates the discussion, and in my view, renders pointless (and trivial and distracting) a distinction between difference and disorder. I must disclose that I lean toward the former, when the issue is forced into this framework (and I must also disclose that, by your definition, my point of view must be discounted).

    Why value-load the semantics of the argument? Why not just acknowledge (as you seem to) that science can pursue avenues relating to causes (the best science now points to genetics) and treatments? It seems to me that the greater good is not served well here by absolutes.

    I truly don’t doubt your good intentions here–and my choice of that phrase is not meant to imply anything about what you’re paving.Report

  7. Avatar Jaybird
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    says:

    “I am advocating that as a society we respect medical science and our conception of what it means for a condition to be a disorder and continue to confront autism as a negative condition that we should work to overcome.”

    Would this sentence have made sense in 1950 regarding homosexuality?Report

  8. Avatar Freddie
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    says:

    Would this sentence have made sense in 1950 regarding homosexuality?

    Again, that is precisely the categorical vision of difference that I am rejecting. I know, I know– it’s very cute. It’s framed in exactly the way I’m arguing against.Report

  9. Avatar Jaybird
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    says:

    Is it more cute or less cute than “dude, I’m open-minded and all, but we should make sure that no more of those people ever come into existence… I mean, ‘people with that disorder’.”

    My respect for medical science is somewhat limited. Radiolab did a spectacular show on diagnosis a while back. You may dig it. The following segment made me gasp as I was listening to it.

    http://www.wnyc.org/shows/radiolab/episodes/2008/12/05/segments/114915

    What did we know in 1950 that we now know, today, is wrong?

    Are you asking us to “respect medical science” on a topic that is something that we will know is wrong in 2050 or, seriously, are you totally getting this one right?Report

  10. Avatar Freddie
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    says:

    I’m saying that the analogy to homosexuality is false, and more, it’s just a pathetic gotcha. I don’t think that there is any meaningful congruity between the two, and I reject the notion that an opinion about one leads to any opinion about the other. But people can’t seem to grasp that.Report

  11. Avatar Jaybird
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    says:

    The analogy I am making is not “homosexuality to autism”.

    The analogy I am making is “people wanting to end homosexuality and people wanting to end autism”.

    Compare to gay marriage vs. “mixed race” marriage. Being gay is not very much like being black.

    I’ll be damned if the people who oppose gay marriage don’t sound just like the folks who opposed “mixed race” marriages.

    It’s the same dynamic here, Freddie.

    I’m not saying that autistic people are like homosexuals.

    And there are a lot more echoes in your argument than just the homosexual one. That should also give you pause.Report

  12. Avatar Freddie
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    says:

    This is comedy, at this point, Jaybird.Report

  13. Avatar Jane Meyerding
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    says:

    There is a reason why parents who adopt the “autism is a difference” perspective often have so much better results in their parenting (at *all* levels of autistic “severity”) than parents whose primary goal is to “cure” their child’s autism. No one in the autistic-led advocacy movement argues that autistic children don’t need help to learn how to function well in society; quite a few autistic children also need medical intervention for specific medical problems. What we say is that the way to achieve the best results is to start by affirming who the child is. Start with the child, proceed as much as possible informed by the child’s point of view, and don’t let the parents’ deep hunger for “normality,” for a child “indistinguishable from his peers,” dictate distaste for the reality of that child’s life.Report

  14. Avatar Jaybird
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    says:

    It’s only comedy in the “farce” sense of history repeating itself, Freddie.

    I’ve no doubt that the eugenics you’re proposing will have any less of a human cost than previous versions.

    Your lack of doubt is… oh, here’s a good term: “Cute”.Report

  15. Avatar Denielle
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    says:

    I think what you fail to recognize is that most autistic advocates do not deny that there are disabilities that come along with autism, (sensory integration issues, social problems) but that we feel that autism is not ONLY a disorder. Autistics have a greater communication between areas of their brains than non-autistics, and while this can cause problems coping with the world as it is now, to varying (and sometimes debilitating) degrees, it can also enhance lateral thinking skills, critical thinking skills and nurture fantastic new ideas. Autistics can be prone to idealism. Idealism combined with lateral thinking can help create a better, more sensible world.

    Shutting down those pathways could take away that potential. Most advocates, instead, advocate for helping autistics to cope with sensory overload, and learn to move in the world around them in a respectful, productive way without squashing those parts of autism which are remarkable.

    It bears mentioning that things like rocking, flapping and even screaming and violence are not autism; they are the coping mechanisms employed to deal with the autism (or the failure of such).

    When I read stories of violent autistics, I see children and adults who are overwhelmed, frustrated and out of ideas – exactly what I see when I read stories of violent non-autistics, in fact. It’s not hard to see where these feelings can be coming from – people with difficulties communicating are often abused by the system, and autistics are the only group I can think of who have to endure socially accepted descriptions of them as less than human, “soulless”, or “empty”. You’d be angry too! You might want to hit someone who treated you like you were deficient simply because they couldn’t understand your methods of communication.

    Just as some non-autistics are mentally retarded, so are some autistics, but mental retardation is not a diagnostic criteria for autism. I suspect those autistics who are mentally retarded might face more challenges from their autistic brains than those who aren’t, but the mental retardation is an issue separate from the autism. Why not “cure” that?

    Many of the things that people talk about being autistic issues, in fact aren’t part of autism at all, but part of co-morbid conditions. Autism is not frequent respiratory infections, autism is not angry bowels, autism is not attention deficits, autism is not dyslexia, autism is not depression. Autistics tend to have higher rates of these co-morbidities than the rest of us, but they are not part of the diagnostic criteria of autism.

    Research is showing that autistics have larger brains, with a greater neural interconnectedness than those who aren’t autistic. This does cause problems, but it also causes opportunities.

    For the personal touch: My 10 year old autistic son can’t tie his shoelaces, his ability to communicate with others outside his family is markedly hampered (though he CAN do it – with a large, expressive, vocabulary, but lacking the typical cadence of social speech) and his executive functioning skills are comparable to those of a much younger child. He does smear poop, and he does have difficulty with transition. He gets migraine headaches.

    He also makes connections between pieces of information that astound even the most educated adults, his skill as a visual artist is something to be admired and he has an acute sense of responsibility for a child his age. He has a well-developed sense of fairness and justice that also exceeds most children his age. He seems to pick up languages very quickly.

    We want to help him communicate more effectively, so we work on that. We employ speech therapists, and we speak with him about conversational reciprocity. We would like him to stop smearing poop, so we talk to him about that, too, and now he, at least, has better habits. We also try to identify times when he’s doing this, in order to gain a better understanding of what he gets out of it, so we can suggest alternative methods of coping. We’re having some success with this. We don’t want him to panic every time he needs to make a transition so we help him learn what he needs to do to prepare himself for a transition and to do what we can to ease those. We do exercises and work with an OT to help his executive functioning skills. We buy him slip-on shoes. In all cases, we apply these methods with a goal of helping the boy grow, like any parent does with their non-autistic child.

    His IQ tests in the 99th percentile in some areas, the 97th in others, and the 92nd in others. His processing speed is, however, in the 7th percentile. His executive functioning hovers somewhere around the 25th percentile. Because there is so much going on in his brain, it takes a bit longer to access the information he has, a bit longer to send messages to his body, but I do happen to think that if we shut down those neural connections, we also shut down the ones that give him such high IQ scores in the first place.Report

  16. Avatar Mark Thompson
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    says:

    Gentlemen, calm down! There’s an obvious distinction between autism and homosexuality, which is that in our modern society the former, in and of itself, makes “getting by” independently on a day-to-day basis just about impossible for those with severe autism – and much more difficult for those with more mild forms of autism. That said, and as I go into much more detail about upblog (hint, hint), for most milder forms of autism and other “mental disorders,” there’s no reason to think that the manner in which they impede life is anything other than the result of the values our current culture emphasizes. People with autism and other disorders should be able to treat themselves to cope with modern society because they’re not entitled to demand that society change on their behalf. But at the same time, society should recognize that labeling those traits as “disorders” that should be “cured” is short-sighted and fails to understand that the problems associated with autisms are ultimately more a result of historical accident than they are of some “defect.”Report

  17. Avatar Jaybird
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    says:

    Mark, there is an obvious distinction between homosexuality and autism.

    I’m just not seeing disinctions between different types hoping to remove certain types of genetic undesirables from society.Report

  18. Avatar Freddie
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    says:

    No one in the autistic-led advocacy movement argues that autistic children don’t need help to learn how to function well in society

    I’m sorry, but that just isn’t true. Click the link, and you’ll find people who think that it is society that is wrong, and not the children.

    I’ve no doubt that the eugenics you’re proposing will have any less of a human cost than previous versions.

    Ah, yes, eugenics. As I’ve explicitly denied that people should be forced into any kind of treatment, or any kind of treatment for their children, that’s “eugenics”.Report

  19. Avatar Denielle
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    says:

    In many cases, Freddie, society IS in the wrong. The idea that society deals with autistic people with disrespect and in a way that is counterproductive to even its own stated goals does not necessarily preclude those who hold that idea from wanting to help the children function better. This is the biggest straw man I see from this side of the disagreement: You are asking for society understand what it ACTUALLY is to be autistic, instead of what it looks like to you, therefore you must think that autistics should just be left to their own devices for all of us to deal with.

    The problem is that many of the treatments, therapies and “cures” that are extended to autistics and their parents do more harm than good, and if we want to see better treatments and therapies, we’re going to need to understand exactly what it is we’re treating a whole lot better.

    eugenics, actually, is weeding out the problem on the genetic level, and a HUGE amount of autism research dollars go towards this goal, genetic testing so that autism can be detected in utero (or before) and wiped out. Eugenics is not treatments, eugenics is obliteration and, yeah, lots of autistic people have a problem with that idea.Report

  20. Avatar Mark Thompson
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    says:

    Jaybird:

    I have to say, I think you’re being a bit unfair to Freddie. He’s not saying that autistic people should be removed from society; just that we should (1) be trying to find a cure for autism because it is a trait that is on the whole debilitating, and (2) encouraging, rather than discouraging, parents to seek treatment for their children.

    I disagree with Freddie on the first of those two, but I don’t think there’s anything unreasonable about his position. As for the second, I just think Freddie’s misunderstanding – in a very normal way – the argument for viewing autism as a trait rather than a disorder.Report

  21. Avatar Denielle
    Ignored
    says:

    For clarity, I have to edit this paragraph:

    This is the biggest straw man I see from this side of the disagreement: You (autistic advocates) are asking for society understand what it actually is to be autistic, instead of what it looks like to us, therefore you must think that autistics should just be left to their own devices for all of us to deal with.Report

  22. Avatar Jaybird
    Ignored
    says:

    As much of a problem I have with the yelly children two booths away when I am trying to enjoy my fajitas at Chili’s, I have read enough history to know where the whole “decent respect for medical science” thing brings us to Buck vs. Bell far more often than it does to a utopia where where one can finally eat one’s fajitas at Chili’s in peace.Report

  23. Avatar Freddie
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    says:

    The idea that society deals with autistic people with disrespect and in a way that is counterproductive to even its own stated goals does not necessarily preclude those who hold that idea from wanting to help the children function better

    I have a hard time imagining a group who are more respected than those who suffer with autism, actually.

    Jaybird, I’m sorry, but you simply can’t force me to be saying something I’m not saying.Report

  24. Avatar Denielle
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    says:

    So calling someone soulless is a sign of respect where you come from?
    Children getting beaten up in school because they’re socially awkward is a sign of the greatest respect?
    Radio disc jockeys who claim that you’re not autistic, just lazy and spoiled equates to more respect than you get in your life?
    Being told that you shouldn’t be in public because your rocking or humming bothers other people is respectful?
    Being told that your life is a tragedy, your parents probably divorced because of you and it’d be better if your parents had a child with cancer because at least those kids die sooner is respect?
    Being locked in a glorified broom closet several hours a day is respect?
    Having your condition exaggerated and then used to attract funds and attention for someone else’s totally unrelated cause (see PETA’s “got autism” ads)
    Being torn away from your parents and home because someone decided that your behaviour was indicative that you were being abused, despite the fact that it’s well-documented autistic behaviour?

    These are all things that have happened in the public eye, not just individual personal anecdotes and they’re not things that I’ve made up.

    Are you for real or just a really articulate troll?Report

  25. Avatar Jaybird
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    says:

    I’m not forcing you to say anything, Freddie. You come up with gems like “I have a hard time imagining a group who are more respected than those who suffer with autism, actually” all by yourself.

    Would you say that a comparison between this statement and someone brave enough to complain about affirmative action would be appropriate?Report

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