difference/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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26 Responses

  1. Avatar Jaybird
    Ignored
    says:

    “My critics”. My god, you’re still singing that you are the victim here.

    Your privilege is showing.Report

  2. Avatar Mark Thompson
    Ignored
    says:

    Arrgh! I just lost my response to this. Anyways, this is a challenging riposte. I’ll try to rewrite a response later.Report

  3. Avatar Jaybird
    Ignored
    says:

    How much of this post informed by the “insight” that parents of autistic kids are “the only or even primary voice in our national conversation on autism”?

    How much is constricted by the limitations of imagination shown by the admission that Freddie has “a hard time imagining a group who are more respected than those who suffer with autism, actually”?Report

  4. Avatar Denielle
    Ignored
    says:

    Autism is a difference that needs support, is that really that hard to wrap your head around?

    Here’s an easier way to put it: With appropriate support, Autism doesn’t need to be debilitating or crushing or tragic or any of the other things we’re told it is in order to solicit way too much money from parents who are terrified of their kids turning into that tragic story. With appropriate supports and early intervention, this is not a thing that needs curing…which is convenient since it’s part of the brain’s biology and therefore, “curing” an autistic person is WAY outside of our current medical technology.
    Also: since it’s part of the brains biology, treating people with autistic traits like shit, even when they aren’t hurting anyone (which is most of the time) is what’s causing problems where autistics are harming themselves and others. A little sensitivity to the fact that these people aren’t what you’ve been told they are and a little research into who they actually are could work wonders to mitigate all these horror stories you hear.Report

  5. Avatar Landru
    Ignored
    says:

    Freddie, you have, over the course of the day (and in response to criticism, some of it strawmanning or otherwise unfounded), intensified your tendency toward sweeping statements on this issue, and turned your own generalizations around to project them onto your…uhm…tormentors, for want of a markedly better word.

    “What I am saying is that a rational society must insist on a certain degree of internal consistency in how we view autism, and I am saying that I believe that the best thing for those who suffer from autism is a society that recognizes the medical nature of an often debilitating condition. I may be wrong in that regard.”

    You may be wrong in more ways than this, but the reason that you are very nearly offensively wrong in this regard is your insistence on internal consistency in dealing with a set of conditions, behaviors, and symptoms that is not, by any stretch of the imagination, consistent–as you take care to acknowledge earlier in this post. Your selection of such value-loaded gems as “rational society must insist” isn’t doing anything to distinguish you from those you label as emotional. The difference-versus-disease debate is a reaction to this kind of absolutist thinking about autism spectrum conditions. You started this debate with your first post by addressing something that is largely a semantic issue. You’ve let your antagonists spur you to some pretty silly rhetorical heights.

    “The insistence by some of my critics that my refusal to adhere to a logically porous vision of the condition demonstrates moral intransigence only serves to show the degree to which emotionalism and bad faith has come to cloud this issue.”

    As may be. And as does your insistence on applying a logically consistent framework to an artificial and broad class, and your scorn for those who refuse your artificial and wildly generalized view of the overarching discussion.

    I’m not pretending that your local critics are right. And I’m not pretending that you are (as I understand what I think you mean) wrong, in the larger sense. The eugenics thing is ridiculous. But you’re inviting this nonsense with your implied (and in one or two places, explicit) that insistence that those who refuse to view all persons with autism diagnoses in the same light is not rational or logical.

    I truly mean no disrespect here. This is your space, and I appreciate your allowing comment.Report

  6. Avatar Chris Dierkes
    Ignored
    says:

    Freddie,

    I guess my question is why disorder inevitably moves to a curing solution? Let’s say I agree with you that autism is a disorder. So is alcoholism and that isn’t cured. It’s negative effects can be dealt with–with help from society giving some room and recognizing the challenges involved. I’m still allowed to say alcoholism is a dis-ease (or dis-order) and not say that they must be cured and anyone who argues differently is trying to have it both ways. that’s a logical position seems to me.

    In relation to Mark’s post, I think you should give more thought to his specification of milder forms of said realities (Asperger’s, autism, ADHD, etc.). My reading of your post doesn’t show gradations–it’s kinda all or nothing. I think the point you are making (re: disorder) is probably more accurate within the range of more severe cases. Maybe Mark’s point has more validity relative to lesser degrees of severity?Report

  7. Avatar Denielle
    Ignored
    says:

    the majority of autistics are in the mid to high functioning range, and many of the high functioning autistic adults out there were low functioning as children.

    My problem is with billions of research dollars per year going into genetic identification (and the eugenicist potential that holds) while a scant minority of research dollars go into treatment.Report

  8. Avatar nadezhda
    Ignored
    says:

    I’m feeling like this is deja vu all over again from my distant youth, and based on that experience, I fear the way the discussion is being framed is likely to produce ships passing in the night . So let me take a whack at restating and expanding the discussion a bit — apologies for the length of this comment, but it’s a complicated topic.

    This conversation strongly reminds me of the old debates about mental illness, and especially R.D. Laing’s romanticizing of schizophrenia. Over the course of a couple of decades we went from fairly indiscriminate warehousing of too many people in mental institutions to making it extremely difficult for people to get help for themselves or their loved ones on the too-often specious grounds that the “autonomy” of the disturbed individual has to always be respected. This trend often reflected at least an unstated assumption that the “authenticity” of a “non normal” person whom we would diagnose as mentally ill was to be valued over “artificial” normality produced by medication or hospitalization. In the process of challenging older, stigmatizing and often dehumanizing treatments for “non normal” psychological conditions or behavior, we’ve wound up putting such a value on “autonomy” or individual freedom, that the individual’s choice is preferred even if the person’s condition makes it highly questionable whether he or she is capable of assessing the consequences of forgoing treatment or of managing independently to keep body and soul together.

    The history of how we have changed our approaches to “mental illness” is far from a perfect analogy to the types of “non normal” neurological conditions being discussed here. But there are some parallels, and it’s a cautionary tale about taking good intentions too far. So I think Freddie is right to raise his warning flags, which should not be dismissed so quickly.

    Maybe we could take a look at what we’ve learned about a variety of primarily-neurological conditions that make people outliers from “normal”, whether it’s different types of “mental illness”, or autism, or learning disabilities. For me, that would include the following observations.
    1. “Non normal” shouldn’t be equated with moral weakness. But it’s also not a “free pass” for any type of deviant behavior. Personal responsiblity is going to be difficult to assign in many cases, it’s hard to draw bright lines, but we shouldn’t abandon it completely.
    2. “Non normal” must not be stigmatized. It doesn’t mean “not human”. We should use our capacity for empathy to find ways to connect — whether to the loving enthusiasm of a man with learning disabilities or to the geeky creativity of a woman with Asberger’s or the energetic friend who indulges in zany, high-risk behavior one day and won’t get out of bed the next.
    3. “Non normal” isn’t binary. Most of these brain-neurological-psychiatric-related conditions appear on a continuum, from mild personality traits that may crank up in some circumstances (especially under stress — hence neuro-endocrinology variables) to conditions that are totally and permanently destructive for the sufferer (and yes, on the extreme end it’s suffering) and for those around him or her.
    4. We should be working to expand the range of choices available to those with “not normal” conditions or behavior. For some people, treatment will allow them to live a fuller, richer life. For others, the trade-offs between the benefits of being more “normal” will be outweighed by negative side effects or by the loss of some aspect which they value of the “non normal” way they experience life and interact with the world.

    5. At the other end of the continuum, we should make it as easy as possible for caretakers (whether related by blood or assigned by the community) to obtain mandatory care that will mitigate the worst suffering from the condition.

    To bring this down from the abstract, I’ll use a couple of anecdotes to illustrate those points.

    The first is of a very high-performing, kind and generous man who discovered in his late 40s, when he was researching whether it was likely one of his children might be ADHD, that he himself fit a classic profile of symptoms. So he’s been on several different medications for the past decade. He’s still high-performance, but life isn’t nearly the strain it used to be. He doesn’t have to use as many tricks, or work quite such an irregular schedule, to make up for his concentration difficulties. In fact, he didn’t know that he had concentration difficulties — he thought that he was “normal” and has been delighted to find he was wrong and learn what “normal” could be. His impulse control — which was very low and was associated with angry, irrational outbursts and alcoholism — is much improved. He was on the mild end of the disorder, and he certainly never denied that he was morally responsible for his anti-social and self-destructive behavior. But he was carrying an unnecessary burden.

    The choice of the mediation is a wonderful blessing for both himself and his family. People who would dismiss his “non-normal” ADHD behavior as moral weakness have no empathy. People who would celebrate his “non-normal” ADHD behavior as a heighted version of a variable personality trait, and therefore condemn “medicalizing” humanity’s wonderful diversity, are simply cruel romantics. He’s a moral agent — give him the choice as to how to live his life if it can, in his terms, be lived better through the wonders of modern chemistry. And don’t condemn his choice, whether to live with or without medication.

    The other example is tragic, but one that has become all too familiar in the last thirty years — a man who had been a brilliant but erratic, and sometimes mean and violent, child, and who had several psychotic episodes as a teenager. As he grew older, he went from one new situation after another — sometimes dropping out because he couldn’t manage social interactions properly (like getting kicked out of Marine boot camp), sometimes because he’d have another breakdown. By the time he was in his 30s, he no longer could sustain social interactions well enough to be able to get and hold even the most menial job. Throughout, his family had provided financial support, a home when he’d wind up on their doorstep broke and thrown out of a dorm or an apartment, and whatever medical help they could occasionally persuade him to get (by this point he’d been diagnosed as schizophrenic but they couldn’t force him to receive treatment). By the time he was 40, he was literally living under bridges and doing drugs, just clever enough to keep food in his mouth through petty pilfering, panhandling etc. The family would only hear from him when the local police (who knew him well and only picked him up when things were seriously out of hand) gave him a phone to call someone to bail him out on some disturbing-the-peace charge.

    Only when his condition deteriorated to the point that he was suffering frequent halucinations and playing with very large, very sharp knives was the family able, with enormous effort and terrible emotional strain, to get a court order for him to be placed in a hospital for observation on the grounds that he was possibly a danger to himself and others. But once he was stabilized and released to a half-way house he chose to go off his meds and hightail it out of there. And so the cycle of misery — for himself, his parents and brothers, and those people who try to help him — will continue until the day he dies.

    Is he morally responsible for his actions? When he’s not experiencing psychotic episodes, he cleverly sneaks, lies, cheats and steals, knowing the behavior is “wrong” but apparently without a sense of “guilt” acting as an inhibitor. He can assess and describe what his mental condition, both on and off medication, “feels” like and what he prefers, which some of the time is to be off the meds and always out of a monitored environment. Is he a moral agent who should be able to choose whether he receives medical treatment? At what point should the emotional burdens on his family be taken into account when we consider whether to treat him as an autonomous agent? Is it only when his behavior becomes a direct threat to the lives of others that our system should be permitted to intervene and override his freedom to choose?

    I don’t have a clear answer. There aren’t any bright lines. But if we’re indeed concerned about individual freedoms, then we ought to be working to expand the availability of meaningful choices for those who fall outside of our “normal”. The more we learn about conditions that are “non normal” and how they might be “cured” — whether they are classified as “mental illness” or “neurological conditions” or other labels to be invented — the more meaningful will be the choices available to people who are subject to these “non normal” conditions.

    So in our desire not to stigmatize or dehumanize people with “non normal” conditions, let’s not romanticize these conditions but keep looking for “cures”.

    At the same time, while being sensitive to the importance of individual freedom, we should face up to our responsibiities for individuals whose “non normal” conditions are so extreme in the absence of help that they are a severe burden for themselves and those who care for them. Leaving “choice” up to those who suffer extreme versions of “non normal” conditions may make some of us feel we’re “protecting” individual liberties, but IMO it’s ultimately a cop out.Report

  9. Avatar Jaybird
    Ignored
    says:

    As one of the vocal critics, allow me to say right now: I do not think that you are “uncaring”. I actually think that you want what is best for everybody. The problem is that the whole wanting what is best for everybody, when it turns into knowing what is best for everybody, can sometimes turn into “we should make sure that everybody has done for them what is best for all of us together”.

    Which, of course, brings us once again to Buck vs. Bell.

    My problem with OWH has *NOTHING* to do with him being “uncaring”.

    I’m sure that he had the best of intentions and “caring” oozing out of his ass.

    That, to me, is actually part of the problem.

    If you don’t see how whether you have the best of intentions isn’t the (hey, I can use this word!) fucking point, you seriously need to get the fuck over yourself.

    You’re sticking your thumb in the eyes of people who, quite regularly, get thumbs stuck in their eye, telling them how much respect they always get, are forcing them to acknowledge that, yes, they totally see how much you fucking care about them, and about society, and about everything, and about how much “caring” you have oozing out your ass… and, meanwhile, you continue to ignore whether there are folks out there who have said similar things to the things that you are saying and where that has led in the past.

    Sure, sure. You don’t think anybody should be forced to do anything.

    That’s mighty white of ya.

    Could you stop sticking your thumb in folks’ eyes now or are you holding out for people writing comments explaining that, oh no, they know how much you care and totally how caring you are and how you always, always have the best of intentions, and here’s what he probably meant when he put his thumb in your eye?Report

  10. Avatar Rortybomb
    Ignored
    says:

    Homosexuality is a poor choice of comparison; depression is not. Freddie, if Eli Lily came out with a 100% effective no side-effects depression vaccine, would you want children to take it? Be forced to take it?

    My nephew is autistic, and I think you are handling this conversation very well Freddie. I think those who want to argue against disorder aren’t PC, but instead (rightfully, imho) worried about the closure of possibilities and interventions that come with the medical label. There’s a disorder label, but also a disorder procedural – and that procedure tends to be a bit of a disaster in medical science. Especially when the cures that we are finding are less science and more human interaction, therapy and (controversially) diet.

    This is not the same fight as deaf people who don’t want to be able to hear through science/medical intervention.Report

  11. Avatar E.D. Kain
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    says:

    Seems to me that at the end of the day there is simply such a wide swath of autistic diagnoses that it’s hard to lump them all together. Some people get along mostly okay. Others are virtually incapable of normal day to day life. Certainly it is not the same as just any other “difference” and I can’t quite fathom how people can argue that it is.

    Chris – the example of alcoholism doesn’t sit well with me. For one thing, one has to imbibe alcohol at some point and then continue to imbibe it quite frequently to be considered alcoholic. In other words, there is some choice there.

    Then, too, personality differences are partially also choice, partially stem from experience and circumstance, etc. But autism is something that is actually (to whichever degree) something that has gone wrong with a person from the moment of birth; some rewiring of what is “normal” – and this says nothing of the value of an autistic person. This passes no judgment. But it is important to acknowledge that this sort of difference is – well – different from other differences.

    I’m curious – what about Parkinson’s disease? Or diabetes? What about people who have night terrors? Are we meant to draw hard lines on these issues, or is there some sliding scale?

    In the end, if we follow this path toward simply labeling everything as merely different, what risk do we run of losing the meaning of that term, of differentiating differences themselves?Report

  12. Avatar Nance Confer
    Ignored
    says:

    Thank you, nadezhda, for this summary of our moral dilemma when dealing with so many life situations. I could not help but think of our current situation with an elderly relative. She clearly needs help but will not accept it and has not yet done sufficient damage to herself and others to warrant legal intervention.

    NanceReport

  13. Avatar Nance Confer
    Ignored
    says:

    “Seems to me that at the end of the day there is simply such a wide swath of autistic diagnoses that it’s hard to lump them all together.”

    Unfortunately, it seems to have been all too easy to lump them all together. Which has done nothing, imo, to further understanding in the broader community.

    NanceReport

  14. Avatar Mark Thompson
    Ignored
    says:

    E.D. – This statement is simply wrong, I think:

    ” But autism is something that is actually (to whichever degree) something that has gone wrong with a person from the moment of birth; some rewiring of what is “normal” – and this says nothing of the value of an autistic person.”

    Autism is not something like Down’s Syndrome where you either have it or you don’t – it’s simply a description of an entire spectrum of behavioral tendencies that range from outright debilitating to merely slightly eccentric, but doing the person more good than harm. And where the line between “autism” and “not autism” gets drawn winds up being pretty arbitrary – there’s no reason to think that the spectrum simply stops at the point at which people stop getting diagnosed as autistic. Frankly, it’s far more likely that the spectrum continues all the way until you get to the opposite extreme. In other words, everyone can place themselves somewhere on the spectrum.
    I worry far more about labeling every eccentricity as a “disorder” than I do about labeling every difference as merely a “difference.”Report

  15. Avatar E.D. Kain
    Ignored
    says:

    From the Autism Society of America:

    Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.

    The National Institute of Health also lists it as a disorder.

    Why would all these medical associations, including the ones specifically interested in autism call this a disorder if it was merely a difference? I’m sorry, but nobody here is advocating labeling “every eccentricity” as a disorder. There is a lot of science and research (though not nearly enough) that has gone into the study of autism. It’s hardly paved the way toward labeling every eccentricity a “disorder” but simply calling it a difference could indeed lead away from actively funding research into autism in the future…Report

  16. Avatar Erika
    Ignored
    says:

    I have bipolar disorder. I want to both have my serious difficulties and differences known and accepted and dealt with and still be treated as a human being. These things are not contradictory. I don’t see why this is so difficult to understand. If bipolar disorder is simply an illness to be eradicated then my emotional life is simply an illness to be eradicated, and honestly people do treat it that way. This is not necessary and stems from fear, not kind concern. I don’t see why society expects me to take brain-damaging drugs in order to fit in, but it’s certainly not for my benefit, and not, I think, out of any true understanding of the best use of me. I don’t know much about autism but I’d assume they’re making a similar point.Report

  17. Avatar E.D. Kain
    Ignored
    says:

    I guess I can’t understand why it can’t be viewed as both a disorder and a difference, since it is both. The one does not negate or cheapen the other.Report

  18. Avatar Landru
    Ignored
    says:

    I’m truly sorry to quibble, but the Autism Society of America isn’t a medical association, and it most assuredly has an interest in and a position on the semantic debates (difference/disorder, cure/assist/etc.), as well as a number of other controversial autism-related issues. The same is most likely true of just about any autism-related group or Web site, and it’s often very difficult to triangulate what the sides are, let alone who’s on what side(s).Report

  19. Avatar Mark Thompson
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    says:

    E.D. – the key word in there is the word “spectrum.” The way that “disorders” of all types, ADHD, autism, etc., are diagnosed is of necessity pretty arbitrary and very subjective. It’s not something where the patient is given a brain scan and, if certain things are present, the person has autism. Instead, it and other disorders are typically diagnosed through self-evaluation and interviews – if the person hits a certain score, then they’ll get diagnosed with autism; if they hit that score minus one, then magically they don’t have autism. In other words, autism is essentially defined as simply a set of behaviors that are more than x standard deviations from the mean.

    None of this is to say that people who are unable to adjust to modernity because of their behavioral traits should lack access to treatments. But so should someone who simply has trouble with anger management.

    What’s important to recognize here, though, is that for at least some people on the “spectrum,” their “autism” is something that is truly an essential part of who they are and of their identity. Indeed, if you “cured” their autism, they would likely be worse off rather than better off. The very things that make their social interactions more difficult are the very things that are the source of their creativity, and you can’t “cure” the one without killing the other.

    And I should add that we really are in ever-increasing danger of labeling every eccentricity a “disorder.” In the last decade or so, the percentage of children labeled “autistic” has just about sextupled, from less than 1 in 1000 to over 5 in 1000; the percentage of children labeled ADHD has increased tenfold in the last 25 years and is now at 5% of all children; about 10% of adults in a given year are deemed to suffer from a depressive disorder, and so on and so forth.

    The thing is that I have no doubt that all these people benefit from treatment, and they should absolutely be encouraged to seek it. But because of insurance, drug laws, etc., the only way that they can obtain such treatment is if they’re labeled as having a disorder.Report

  20. Avatar E.D. Kain
    Ignored
    says:

    Fair enough – but – isn’t it a good goal to try to find ways to prevent autism altogether? If we could find a prevention – a vaccine of sorts – to totally eliminate the chance of autism from occurring in children from this point on, would we utilize it?Report

  21. Avatar Erika
    Ignored
    says:

    I’d agree that those who protest against the idea that autism is a disorder, or that bipolar is a disorder, are in some sense wrong. Autism qua autism is a disorder, that’s the definition. But their mistake is rhetorical, that is to say, clinging to the sentence “autism is not a disorder” is not correct, but bringing out the grain of truth in it seems more important than condemning the falsity. Trusting that medical science will keep the human being firmly in mind while treating those aspects of the disorder that it can help seems unwarranted to me– not based on any pre-judgment of medical science, but on extensive experience with the mental health system (for an autism example look up the Judge Rotenberg school in Massachusetts). The understanding needs to be that it is a disorder and a difference all at once, that the human being cannot be understood apart from the disorder, and that in treating the disorder one must be very careful of the human being. This subtlety seems to be a lot to ask of the medical system and of people in general. The best thing for most people is to avoid getting one of these labels if they can manage to pass.Report

  22. Avatar Erika
    Ignored
    says:

    (and for those who can’t pass, saying “it’s not a disorder” means “I’m human!”)Report

  23. Avatar Mark Thompson
    Ignored
    says:

    E.D. – How would a vaccine even be theoretically possible if autism is merely a word for people who fall an arbitrarily designated point away from the mean? Given autism’s designation as a “spectrum” disorder, even if a vaccine were theoretically possible, such a vaccine would necessarily also wind up eliminating people who truly are merely eccentric or for whom the traits labeled “autism” truly are a blessing. Where would you draw the line, if it were possible, as to how effective a vaccine could be before it started eliminating mere eccentricities rather than debilitating conditions?
    Again, this is not something where you either have it or you don’t; it’s something that we all possess in varying degrees. But once it gets to an arbitrarily chosen degree, we label it a “disorder.”
    Look, even I agree that it would be wonderful if it were possible to eliminate only the truly debilitating parts of the autism spectrum. But there is simply no way to draw a bright line between the debilitating parts of the spectrum and the parts of the spectrum where autism is not only not debilitating but is in fact an essential part of the individual’s well-being.Report

  24. Avatar Landru
    Ignored
    says:

    E.D., I recognize that you were simply using “vaccine of sorts” as an analog for some preventive mechanism, but there’s also a vocal minority of those who believe that vaccines cause autism. They’re wrong, but they’re loud. And bitter. And they tend to fall (of course, nothing is universal) on the side of the discussion that characterizes autism as a disease or disorder.Report

  25. Avatar mathernoble
    Ignored
    says:

    I often reason like Freddie. I”m most proud when I do it like Nadezhda (#8). I really try not to do it like Jaybird (#9), but it’s hard. Thanks, everyone.Report

  26. Avatar mathernoble
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    says:

    I move to strike the third sentence, above, from the record.Report

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