A lamentation for an antivaxxer

At Respectful Insolence, Orac struggles to respond to “A disturbing post on an anti-vaccine blog.”

The anti-vaccine movement rejects the medical science behind childhood vaccination, believing it to be linked somehow to autism. They used to be able to point to a single study — never replicated and often refuted — that claimed to support this belief, but that study has since been shown to have been based on fraudulent data.

Like most followers of science-rejecting ideologies, anti-vaxxers have to find some way to explain away the objective facts that contradict their claims. And like most science-rejecting ideologues, they do this by theorizing the existence of a vast and nefarious scientific conspiracy.

But the anti-vaxxers differ from other science-rejecting ideologues — climate deniers, young-earth creationists, flat-earthers, Annunaki scholars, dowsers, homeopaths, tea partiers, supply-siders, etc. — in one important way. For those other conspiracy-theorist cranks, the rejection of fact and science remains fairly abstract. They’re all at least dimly semi-aware that they’re play-acting. Having chosen their pose, they work to maintain it and that work cannot be done without the hazy recognition on some level that they are, in fact, posing and pretending.

The anti-vaccine crowd come to their rejection of fact and science from a different starting point. They come from a place of pain. Their choice to reject science is still a choice, and no such choice can ever be wholly unconscious, but they’re not choosing that choice for the pleasurable emotional or financial rewards those others are seeking — for the warm buzz of smug superiority, or the illusory sense of significance, or the affirmation that comes from joining any exclusionary club of like-minded others. The anti-vaxxers are instead seeking a respite from real pain, and they’re desperately seeking the promise of solutions to a situation that science tells them cannot be solved.

In short, they’re usually the parents of a child with autism — a child whose suffering they cannot reach or understand or end. And so they want a cure, or the promise of a cure, however implausible and unproven.

And failing that, they want someone to blame.

All of that — the pain, the desperation and the need to blame someone — is palpable in the post Orac writes about, a long, rambling, disturbed and disturbing rant by an anti-vaccine blogger named Kent.

Kent writes of “Dark Forces” whom he is sure are the cause of his child’s suffering. He quotes an imprecatory Psalm, calling on God to strike down the evil conspiracy of doctors and scientists and drugmakers. He compares them to the villain in Stephen King’s The Stand while comparing himself to the heroes of that epic tale of a confrontation between the children of light and the children of darkness.

That last bit echoes the fantasy role-playing games that underlies all such unreal ideologies. It’s the same Melon morality — the desire to feel righteous by portraying others as extremely wicked. It’s the same desperate need to imagine oneself as heroic, significant and living in “the most critical time in the history of the world.”

But for Kent this isn’t just an indulgent hobby or a way of stroking his ego with a self-righteously judgmental bumper sticker that sets him apart from the unheroic masses. For him this is a defense against the inescapable and inexplicable unfairness of his family’s daily life.

And Kent has become too invested in this fantasy to be able to escape it without great pain. For him, as for so many others caught up in such fantasies, pretense has become habit to the extent that his whole identity, his whole sense of self, had been shaped by the narrative he has constructed to rewrite his world. His investment in that narrative has gone far beyond the uncostly allegiance of bumper stickers or attending conferences, as Orac explains, noting that he has taken issue with Kent previously due to his:

… subjecting of his autistic daughter to what I consider to be rank quackery, for example, stem cell quackery in Costa Rica in which dubious doctors injected what they claim to be stem cells into the cerebrospinal fluid via lumbar puncture. … When I first heard about this, I was totally appalled, unable to understand how a parent could keep subjecting a child to invasive medical procedures with no value at all. Not just that, I couldn’t understand how [Kent] could borrow $15,000 from his daughter’s grandparents in order to travel to Costa Rica to let strange doctors stick large needles into her spine to inject who knows what into the cerebrospinal fluid that bathes her brain and spinal cord. While I can almost understand the desperation, even then, knowing what I know, I can’t imagine paying so much for such a useless intervention that might even be harmful.

Having spent so much money and having committed to committing such deeds — to subjecting his beloved daughter to such fruitless ordeals — Kent now is in too deep to walk away. As Macbeth put it: “I am in blood / Stepp’d in so far that, should I wade no more, / Returning were as tedious as go o’er.”

Liberation for Kent will be more than tedious. It will require him to be broken down and rebuilt. But by this point his identity, his habits and his history have become so wholly bound up in his fantasy that such a breaking down would be devastating — so devastating that I fear the rebuilding might not be possible.

What I found most compelling in Orac’s post was the almost pastoral tone of compassion for Kent. Orac finds Kent’s rant frightening — and it is frightening, hinting at violence, calling for divine violence, and setting the stage for potential human violence with all that talk of “Dark Forces” that must be dealt with. Kent’s post reads like one of those notes found by police in the apartment of some disturbed fanatic following a deadly spree. You can’t read it without worrying about what he might be planning or preparing to do.

But Orac also looks past that to see the pain and misery of this miserable man. And having seen that misery, Orac expresses the hope that somehow, someone will be able to reach him and to — for want of a better word — minister to him. That’s my word, not Orac’s, but that is what Kent needs. He needs someone to shepherd him through what will be a painful and difficult process of dismantling the false identity he has constructed so that a new identity can be rebuilt, one based on reality rather than illusion.

Helping people like Kent escape from the misery they have trapped themselves in is a pastoral mission, but let me also try to describe it in less sectarian terms. Kent needs what AA calls a sponsor. He needs someone to walk beside him, to remind him in unvarnished terms of the hard path that is his only hope for escaping the self-destructive path he’s on now. Think of Steve Earle guiding Bubbles on The Wire, or of Furious Francis helping Don Gately in Infinite Jest.

That metaphor suggests what I think is the only way that people like Kent may be saved from themselves. What they need, I think, is something like AA to help them escape their self-destructive habit, a mechanism that can support them with patience and honesty while ceaselessly confronting them with the reality they’ve worked so hard for so long to deny.

My hope for Kent is the same as my hope for all such people trapped in such destructive habits. I hope that he survives the rock bottom that’s waiting for him, and I hope that he doesn’t hurt too many other people on his way there.

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  • Anonymous

    There are people in the world who wonder if the scientific community is too harsh in its condemnation of those that it finds guilty of falsifying data.

    I can’t feel much sympathy for that idea.

    (Incidentally, I first heard about Wakefield’s fraud from Darryl Cunningham’s excellent cartoon treatment.)

  • Anonymous

    I can’t either. Science is in the business of finding the truth, no matter what, and betraying that is betraying something more than a study or an idea. It always reminds me of Gulliver’s Travels- in Lilliput, lying was a worse crime than stealing, because you can build a fence around your house, but you can’t build one around your mind.

    I would like to agree with what Fred talks about in these last few posts, the belief that these people have a “hazy recognition on some level that they are, in fact, posing and pretending.”  But I disagree. And I disagree, because I think back on my own life.I have believed, done and thought some truly shitty things. And, almost universally, when in the moment, I believed myself to be justified. Most people, I think, believe themselves to be usually in the right- it takes significant outside force to convince us that what we did was wrong. The human mind is capable of some amazing justifications- this is what allows humans to do evil to another human.Which is why the concept of “othering” is so important to understand.  I don’t think there is a single human being who has ever lived who could harm another person. The problem is what you define as a “person.”  The members of the SS were probably quite sweet to their mothers, loved their sisters, brought flowers to their wives.  But because they were able to classify Jews as “not person” in their heads, they could kill Jews, the way you or I would kill a rat, and with as little guilt.Thats the bad news. The good news is that while it is easy to “other” people to a certain degree (we’ve all done it- that high school bully wasn’t a troubled teen in our heads- they’re bastards straight through, with no qualities of good or decency about them) it is very, very difficult to “other” people to the point of killing them. Even in a society as racist as 1920’s Germany, it took a long time and a slippery slope to lead to the Holocaust. And even then, most of the details were hidden from the population at large, and the actual killing was done by people who were carefully and selectively brainwashed. Of course, this is another brilliant use of our capacity for self-deception- people who were not up against the brute realities of genocide were able to deceive themselves.

  • Anonymous

    I can’t either. Science is in the business of finding the truth, no matter what, and betraying that is betraying something more than a study or an idea. It always reminds me of Gulliver’s Travels- in Lilliput, lying was a worse crime than stealing, because you can build a fence around your house, but you can’t build one around your mind.

    I would like to agree with what Fred talks about in these last few posts, the belief that these people have a “hazy recognition on some level that they are, in fact, posing and pretending.”  But I disagree. And I disagree, because I think back on my own life.I have believed, done and thought some truly shitty things. And, almost universally, when in the moment, I believed myself to be justified. Most people, I think, believe themselves to be usually in the right- it takes significant outside force to convince us that what we did was wrong. The human mind is capable of some amazing justifications- this is what allows humans to do evil to another human.Which is why the concept of “othering” is so important to understand.  I don’t think there is a single human being who has ever lived who could harm another person. The problem is what you define as a “person.”  The members of the SS were probably quite sweet to their mothers, loved their sisters, brought flowers to their wives.  But because they were able to classify Jews as “not person” in their heads, they could kill Jews, the way you or I would kill a rat, and with as little guilt.Thats the bad news. The good news is that while it is easy to “other” people to a certain degree (we’ve all done it- that high school bully wasn’t a troubled teen in our heads- they’re bastards straight through, with no qualities of good or decency about them) it is very, very difficult to “other” people to the point of killing them. Even in a society as racist as 1920’s Germany, it took a long time and a slippery slope to lead to the Holocaust. And even then, most of the details were hidden from the population at large, and the actual killing was done by people who were carefully and selectively brainwashed. Of course, this is another brilliant use of our capacity for self-deception- people who were not up against the brute realities of genocide were able to deceive themselves.

  • Anonymous

    I did extensive research on auto-immune disorders and vaccines (particularly the live-virus MMR) vaccine a few years ago (my wife might have Hughes Syndrome, so we were concerned about vaccinating our son.)

    There is some interaction between live virus vaccines and auto-immune disorders – but it’s not a causal relationship – it would be akin to thinking mammograms cause cancer, or that going to the dentist causes cavities.  Giving people with weakened, compromised or “odd” immune systems live virus vaccine can aggravate existing conditions.  That is not the same as “causing” these conditions, but because it aggravates previously unknown conditions it can be easy for the medically… unschooled to see it that way.

    In another example of what I imagine is the same effect, for a period of time we were taking our son to get allergy shots.  After they upped his “dosage” he would immediately develop a high fever, blisters in his mouth and some respiratory symptoms.  He would have these symptoms ONLY after getting an allergy shot, and they would go away within a few hours.  Our allergist (and a few ER doctors) told us that it was “impossible” that this was a reaction to the shot – but after three times in row we decided to begin forgoing allergy shots and haven’t had an event like that since.  The allergies are not life threatening (neither are the fevers and blisters apparently) but ER visits cost a lot more than the bottle of Claritin our new allergist gave us.

    So, I tend to think that people who ignore medical advice like this are not suffering from the same kind of conscious delusion that other people who ignore clear evidence are. Doctors tend to be guilty of confirmation bias as much as anyone (go to a University clinic sometime – I can almost promise you that you are fat, stressed out, or have the clap – regardless of what is actually wrong with you.)  It’s tough to tell when doctors, or professionals of any variety really, are blowing you off because it’s too much trouble to approach you as a particularly interesting individual, or when they have actually given some thought to your problem.  (To be fair, doctors don’t do this consciously – but when 9 out of 10 patients you see are malnourished, overstressed, or have an STD, that tends to be the place you look first.)

    Also when it’s your kid in danger, you tend to err on the side of paranoid fantasies.  Especially when there’s nothing that can be done.  It doesn’t take much to be overwhelmed at the cruelty of the universe and just decide that somewhere, somebody must be to blame.

  • Anonymous

    I don’t think autism an autoimmune disease.

  • Anonymous

    It might be… nobody really knows for sure what causes the plaque buildup that causes autism.  I think the claim that is is pretty well discredit, but we weren’t really that concerned about autism, but whether if he was a Hughes carrier if it could aggravate the syndrome.  It was one of those things were auto-immune diseases ran in our family, so we checked out possible complications on all immunization stuff.

    People undergoing certain lupus treatments shouldn’t get live-virus vaccines for instance.

  • Nix

    What plaque buildup that causes autism? Plaques are strongly implicated in *Alzheimer’s*, not autism (though autistics can *get* Alzheimer’s, like anyone else). There are few gross neuroanatomical signs of autism (suspicion has fallen on certain forebrain areas being slightly reduced in size, on a hyperconnected and overlarge amygdala, on an exceptionally *small* amygdala, and much else: there are probably many tiny signs, all of which are mere harbingers of the unknown connectivity changes which probably lie at the heart of it).

  • Anonymous

    You are correct.  I said that without looking up the citation.  I was thinking of Alzheimers.

  • Anonymous

    You are correct.  I said that without looking up the citation.  I was thinking of Alzheimers.

  • http://dpolicar.livejournal.com/ Dave

    Agreed in spirit. Thank you for being a voice of both sympathy and sanity on this and many other contentious issues. The combination is sadly rare.

  • http://www.facebook.com/people/Jeff-Lipton/100001171828568 Jeff Lipton

    I, too, have a little more sympathy for the “anti-vaxxers” than the other anti-science crowd. 

    At one time, vaccines **did** contain mercury.  Mercury **would** have had an impact on the brain that **might** explain autism.  Now we have the fabulously trustworthy word of the drug companies that the vaccines are safe.  I might be a bit dubious myself.

    That doesn’t excuse the descent into pseudo-science, but does give a bit more background.  As always, “it’s more complicated than that”.

  • Anonymous

    The mercury in vaccines was/is thiomersal, which breaks down into ethylmercury.  It’s methylmercury that is harmful.  It’s like saying generic alcohol will kill you, when there’s a pretty big difference between ethanol and methanol.  While I’m not claiming that thiomersal is completely harmless, it’s still wrong for those people to see “mercury” as just a generic buzzword for poison.  This common fear of “chemicals” and just things that sound bad is a real problem even outside of the vaccine issue.  I don’t really know what we can do about it because not every person can be a chemist, but “it’s more complicated than that” isn’t a satisfying answer to most people.

  • Tonio

    “it’s more complicated than that” isn’t a satisfying answer to most people.

    Dumb idealistic question – is it practical or even possible for people to learn not to expect satisfaction in any sort of answer? To treat that desire for satisfaction as unhealthy in anything but small doses, sort of the intellectual equivalent of the empty calories in sweets or potato chips? To me, the idea of answers being satisfying implies an assumption that one’s emotions matter to the universe, or that how one feels has some impact on the universe outside of one’s actions.

  • Tonio

    Or put another way, can people learn that happiness and satisfaction are things we make ourselves instead of being granted to us?

  • Moose

    “At one time, vaccines **did** contain mercury.”
    Thiomersal, which contains mercury with in an atomic structure.  This is like claiming salt **does** include chlorine.

    “Mercury **would** have had an impact on the brain”

    Thiomersal **would** metabolize into ethylmercury, which would **not** bioaccumulate in humans.  As one would expect from a preservative and anti-bacterial/fungal agent, it **is** toxic in large quantities.  Then again, so is penicillin.

    “that **might** explain autism.”

    No.  Or, rather, only to the extent that the growing shortage of unicorns in the world **might** explain autism.  There is absolutely no feasible mechanism for Thiomersal to ‘maybe’ explain autism.

    “Now we have the fabulously trustworthy word of the drug companies that the vaccines are safe.  I might be a bit dubious myself.”

    In addition to the regulatory agencies of North America and Europe.  I’m not claiming that those governments are always right, honest or competent, but we also have only their word about a lot of things we depend on.  On the balance, our governments get most of it right, and life goes on.

    I agree that it is more complicated than that, but in some ways its also simpler.  The only reason that there was ever any cause to consider a link between Thiomersal and autism was a single study. That study was analyzed and repeated, and its results were never duplicated.  It has since been revealed as a willful fraud.

    Sometimes there is a simple answer: willful fraud, and fear-driven willful denial.  That doesn’t take away from the sadness I feel for the people taken by this hysteria, but I mix with a generous dose of pity.

  • Moose

    Edit: I said that Thiomersal contains mercury within an atomic structure, when I clearly should have said molecular.  My apologies.

  • Dr. Rocketscience

    Bad Chemist. No Cookie. ;-)

  • chris the cynic

    No.  Or, rather, only to the extent that the growing shortage of unicorns in the world **might** explain autism.

    But aren’t you missing the important point that, regardless of the link to autism, there should be more unicorns in the world?

    I’m on the spectrum, I guess I’d like there to be a cure available to those who want it (of which I am not one) but am more interested in people finding better ways to help those who are hindered to become less hindered (I think searching for better means of accommodation and working for increasing awareness and acceptance is probably a better use of resources than looking for a cure.)  And I want a unicorn.

    As for the anti-vaccine people, I have sympathy for their pain, but it’s the same type of sympathy you feel for the villain in a story that shows how the villain became a villain.  Right here, right now, they are the bad guys.  If we can stop them by helping them to see the light, that’s wonderful, in fact it’s probably ideal, but I care more about those they might harm than about them.

  • http://inquisitiveravn.livejournal.com/ Inquisitive Raven

    Uh, actually Wakefield’s study had nothing to do with thimerosal (American spelling). It was on the MMR which has never had thimerosal or any other preservative in it because it’s a live virus vaccine. Wakers’ claim was that susceptible children developed a persistent gut infection from the measles component, and that somehow the virus made its way from the gut to brain.

    The mercury scare was a largely American phenomenon resulting largely from the CDC and DHHS being stupid about the thimerosal in the vaccines. I recommend Autism’s False Prophets by Paul Offit for good overview of that mess. It also covers Wakefield’s paper, but it was published before Brian Deer uncovered the evidence of fraud.

  • P J Evans

    I’m still seeing people saying that vaccines contain mercury – I ran into that claim just this week on a newspaper page, and replied that they haven’t contained it for years.

  • Anonymous

    In short, they’re usually the parents of a child with autism — a child whose suffering they cannot reach or understand or end.

    Just as a heads-up: you almost certainly will get attacked for that. The rather extreme end of the neurodiversity movement tends to insist that even those with extreme autism are not suffering, and definitely do not need a cure. As a somewhat mild Aspie, I disagree (heck, even *I’m* … not suffering, per se, but limited) — but that’s another story.

    I can’t say I have much sympathy for the anti-vax crowd — I think that childhood illnesses are an evil we’re better off without — although you’ve definitely done well to draw forth what little I have for them. Most of the parents are in a very tough position. Accepting the scientific consensus — that autism is largely genetic — implies that parents are, in part, responsible for their children’s condition. And that’s incredibly hard to accept.

  • Shay Guy

    I’d say people with autistic spectrum disorders tend to have a lot more trouble dealing with the world around them than those without, and in that sense there is more “suffering” involved. This does not in any way imply that a “cure” is required to alleviate said suffering, nor that it is a path at all worth pursuing.

  • Anonymous

    I’d say people with autistic spectrum disorders tend to have a lot more trouble dealing with the world around them than those without, and in that sense there is more “suffering” involved. This does not in any way imply that a “cure” is required to alleviate said suffering, nor that it is a path at all worth pursuing.
    I wouldn’t disagree — except that (as an Aspie) I *would* say that a cure is desirable (if not necessary) and that autism should be prevented if at all possible. I’m just saying that others quite vocally disagree. I think it’s largely a defensive behavior, but that’s beyond the point.

  • Anonymous

    I’d say people with autistic spectrum disorders tend to have a lot more trouble dealing with the world around them than those without, and in that sense there is more “suffering” involved. This does not in any way imply that a “cure” is required to alleviate said suffering, nor that it is a path at all worth pursuing.
    I wouldn’t disagree — except that (as an Aspie) I *would* say that a cure is desirable (if not necessary) and that autism should be prevented if at all possible. I’m just saying that others quite vocally disagree. I think it’s largely a defensive behavior, but that’s beyond the point.

  • Brit

    It is complicated.  Part of the blame lies with the narrative surrounding what Autism IS.  It has been described by many like their children have been locked away in a prison, and if the parents could only find the key to the door they can rescue them.  It has been described as if someone has stolen the child’s soul, which has led to some parents seeking exorcisms.

    The common thread seems to be “This is not really your child.”  So they chase after the child they imagine, the one they had pinned all of their hopes and dreams on.  And it is very hard to let go of that.  Parents need to realize that they are chasing after a dream, and that they harm their kids by not focusing on the real son/daughter that is right there in front of them.

    It’s not as easy as simply telling them that, though.  Autism is still poorly understood.  The people who give them hope for a “normal” child are often one of the few people who are kind to them.  I have two autistic kids.  We have gotten the dirty looks and nasty comments when out in public.  If it seems like everyone hates you then you will latch on to the first person who offers some kind of support.  If you feel utterly alone, you will stick by people who have the same experiences in order to not feel so lonely.

    So yes, Fred, you’re right.  They need someone to guide and support them.  Not just to get away from the anti-vaxxer nonsense (and other peseudoscientific “treatments”), but in their day-to-day lives.

  • ako

    The common thread seems to be “This is not really your child.”  So
    they chase after the child they imagine, the one they had pinned all of
    their hopes and dreams on.  And it is very hard to let go of that. 
    Parents need to realize that they are chasing after a dream, and that
    they harm their kids by not focusing on the real son/daughter that is
    right there in front of them.

    I think this is common in a less-extreme form in a lot of disabilities.  I have an entirely unrelated physical disability, and I still get the sense from a lot of people about how non-disabled me is both preferable to and more ‘real’ than actual me.  She’s like some horrible ghost-twin that’s considered fundamentally better and more desirable and more entitled to exist than me.  A lot of people not only make it clear that they’d happily trade me for her in an instant, but are bothered that I wouldn’t joyfully make the same trade.  And it’s tricky, because hypothetical non-disabled me doesn’t feel like me in my head.  There’s so many little details about how I live, how I move, how it feels to be in my skin, things I plan for, things I think about, things I do etc., that would need to be changed and replaced by either generic “Whatever normal people do” or by a complete unknown.  I can’t picture that person they’re envisioning as me at all.  She really does feel like a replacement.  But somehow, despite actually existing, I’m less real.

    I know it’s not that way for everyone, and “This is part of me!” versus “This is some trait I am not particularly attached to and would happily get rid of to avoid the problems associated with it” is really complex and variable and personal.  I understand that the “You like the idea of having your disability cured?  That’s only because of internalized ableism!  If you weren’t wrong in the head in irrational ways, you’d agree with me about what your mind and body should be like!” attitude copped by a few people in the disability rights movement is a dick move, and I do my best not to come off like that.  I try to respect the lives, experiences, and choices of people with disabilities who want cures.  I just wish more of them would extend the same courtesy to me, and stop telling me how wrong and unreasonable I am.  

    Plus, I wouldn’t get half as nervous when people talked about cures if there weren’t so many people going “I think everyone needs to be cured and people who don’t want to are just being unreasonable!”  Although part of that gets into the reality of possible cures (often uncertain, frequently involving some degree of pain, almost inevitably requiring some cost in terms of time/money/risk) with the hypothetical instantly perfect cure usually debated.  (Not that I think it’s unreasonable for a person to think the cost in terms of time/money/pain/risk of long-term harm is worth it for them, just that it’s a complicated trade-off, and for some people “I’m not going to spend several thousand dollar/be incapacitated for that many weeks/endure that pain/risk losing the abilities I do have!” is also a reasonable choice.)

  • http://profiles.yahoo.com/u/5OPDTGMVEFDYDKHEXSNNWOFNWY Jim

    @ Shay Guy – To quote the Dread Pirate Roberts, “Life is pain.”

  • Consumer Unit 5012

    @ Shay Guy – To quote the Dread Pirate Roberts, “Life is pain.”

    “And anyone who tells you otherwise is selling something.”

  • Anonymous

    I’m in a bit of a mixed position on this. The people who “push” the anti-vax line, people like Wakefield, I loathe virulently, and people such as those in the AVN who declared that a child’s death from pertussis was a lie…I just cannot stand them. However, I have a lot of sympathy for the parents of autistic children who get taken in. Parenting is hard. Parenting disabled children, especially in a culture full of systemic disablism and, in the US at least, a poor social safety net, is very hard. And since our culture pushes the nefarious idea that if something is “wrong” with a child, if something happens to them, it MUST be the parents’ fault (especially the mother)…well, I really end up feeling bad for the family rather than angry at the parents.

    …but then I remember how much of this quackery is unsafe and how damaging this is to public health and I get angry again. It’s complicated.

  • Kate

    Fred, I think you’re a little harsh on this guy.  Not every parent with an autistic child has a science degree, nor have they been adequately exposed to scientific process or critical thinking.  A lot of these anti-vax schmucks rely on that, and like a lot of homeopathic hacks seem to rely on the old saw “If you can’t dazzle them with your brilliance, baffle them with your bullshit.”   

    Think of it, if you had no additional evidence or proof you could understand, would you choose to believe the self proclaimed scientist who said your child COULD be saved, or the one who said they COULDN’T? 

    And if you’re going to believe someone who tells you this could have been prevented, or that this food or that pill would make your child “normal”, wouldn’t you also be angry at those who deny it?   

    I think this is sad…  terribly, terribly sad. 

    These people are not addicted to their stupid.  Some sort of 12 step isn’t going to help them.  Nor is any dose of fact.  They aren’t going to be able to see it.  What they need… what WE need is a little understanding.  Some parents never move beyond rage and denial in dealing with the reality of having autistic kids.  

    I also believe that once some of the social stigma of having a child with disabilities is lifted (and a lot of parent-blaming that still goes on in some circles) Parents will be able to be less defensive, more proactive, and more rational. 

    In the mean time, it’s entirely predictable that some parents will go off the deep end trying to help their child.  

  • http://dpolicar.livejournal.com/ Dave

    Kate – “Think of it, if you had no additional evidence or proof you could understand, would you choose to believe the self proclaimed scientist who said your child COULD be saved, or the one who said they COULDN’T? ”

    All else being equal, I would choose to believe the one who said they could.

    But that’s not terribly relevant to the case where all else is not equal.

    If your claim is that, from this person’s perspective, all else actually *is* equal… there’s just no reliable grounds on which to choose to believe the medical establishment over some arbitrary selected clinic offering claims a far superior cure that they are unable to evaluate… well, OK. I don’t doubt that there are some people for whom that’s true.

    So much the worse for them.

  • Anonymous

    But that’s not terribly relevant to the case where all else is not
    equal.

    I’m thinking human psychology means “there’s hope” trumps just about any amount of evidence.

  • Anonymous

    But that’s not terribly relevant to the case where all else is not
    equal.

    I’m thinking human psychology means “there’s hope” trumps just about any amount of evidence.

  • A. Galley

    It makes it very hard to sympathize with someone when you know that they’re possibly endangering or harming their own child.

    I don’t mean, by that, a self-righteous rejection of what Fred is saying. I’m not saying that trying to reach out to, or at minimum pity, people like Kent is not necessary.

    But the involvement of a child, growing up within that dangerously unhinged environment, makes it very hard.

  • http://www.facebook.com/people/Michael-W-Busch/578120211 Michael W Busch

    Fred, I’m wondering something here:

    You’re describing the anti-vaccine crowd (or at least some significant fraction of it) as practicing willful ignorance and deliberate rejection of reality.  That is true at some level, but, trying to be charitable to the anti-vaxxers: isn’t some of their agenda’s appeal due to lack of experience with the diseases that vaccines prevent?

    Most living Americans have never seen a case of measles – even with anti-vaxxers having caused some clusters of cases to be ten times larger than they should have been.  The same for mumps or pertussis and so on.  Perhaps not knowing exactly how terrible the consequences of not vaccinating can be makes the idea of removing any wrongly-perceived risk of vaccination having harmful side-effects more appealing.  I do not know myself, because both my parents and my teachers taught me epidemiology very early on, and because I had pertussis in elementary school.  Spending a week in quarantine coughing and drinking foul-tasting erythromycin solutions is a powerful lesson.

    This leads to something else that I think needs to be emphasized more in public discussion of vaccination: herd immunity.  I had had the DTP vaccinations, but got pertussis anyway because the vaccine isn’t 100% effective.  It doesn’t need to be – it just needs to be effective enough and administered to enough people that anyone with the disease spreads it to on average less than one new person.  Then instead of an epidemic, the worst that happens is localized clusters of infections.  

    The anti-vaxxers aren’t numerous enough to cause a breakdown in herd immunity except in some small groups of people, which is good, but they are still harming others by their decision to not get themselves or their children vaccinated.  For example, seasonal influenza vaccination in urban areas saves one life for every four or five hundred children that are vaccinated – mostly because the kids aren’t infecting their grandparents or other older people who are more likely to die from the disease (herd immunity to influenza needs to be renewed every time a new strain shows up).  So never getting a flu vaccine is equivalent to deciding to take a couple of percent chance of somebody else’s grandmother dying. 

    Can willful ignorance extend to ignoring what measles (or pertussis or influenza) can do to a person?  I’d like to think that lack of knowledge, rather than malice or desperation, is to blame.  But maybe I’m wrong.

  • http://www.facebook.com/people/Michael-W-Busch/578120211 Michael W Busch

    Fred, I’m wondering something here:

    You’re describing the anti-vaccine crowd (or at least some significant fraction of it) as practicing willful ignorance and deliberate rejection of reality.  That is true at some level, but, trying to be charitable to the anti-vaxxers: isn’t some of their agenda’s appeal due to lack of experience with the diseases that vaccines prevent?

    Most living Americans have never seen a case of measles – even with anti-vaxxers having caused some clusters of cases to be ten times larger than they should have been.  The same for mumps or pertussis and so on.  Perhaps not knowing exactly how terrible the consequences of not vaccinating can be makes the idea of removing any wrongly-perceived risk of vaccination having harmful side-effects more appealing.  I do not know myself, because both my parents and my teachers taught me epidemiology very early on, and because I had pertussis in elementary school.  Spending a week in quarantine coughing and drinking foul-tasting erythromycin solutions is a powerful lesson.

    This leads to something else that I think needs to be emphasized more in public discussion of vaccination: herd immunity.  I had had the DTP vaccinations, but got pertussis anyway because the vaccine isn’t 100% effective.  It doesn’t need to be – it just needs to be effective enough and administered to enough people that anyone with the disease spreads it to on average less than one new person.  Then instead of an epidemic, the worst that happens is localized clusters of infections.  

    The anti-vaxxers aren’t numerous enough to cause a breakdown in herd immunity except in some small groups of people, which is good, but they are still harming others by their decision to not get themselves or their children vaccinated.  For example, seasonal influenza vaccination in urban areas saves one life for every four or five hundred children that are vaccinated – mostly because the kids aren’t infecting their grandparents or other older people who are more likely to die from the disease (herd immunity to influenza needs to be renewed every time a new strain shows up).  So never getting a flu vaccine is equivalent to deciding to take a couple of percent chance of somebody else’s grandmother dying. 

    Can willful ignorance extend to ignoring what measles (or pertussis or influenza) can do to a person?  I’d like to think that lack of knowledge, rather than malice or desperation, is to blame.  But maybe I’m wrong.

  • Sgt. Pepper’s Bleeding Heart

    Perhaps not knowing exactly how terrible the consequences of not vaccinating can be makes the idea of removing any wrongly-perceived risk of vaccination having harmful side-effects more appealing.

    Definitely. The number of people who tell me that measles is a mild childhood illness akin to the flu, and that the only reason people ever died of it is because back in the day they were all malnourished and had poor hygeine. Try two weeks of high fever and continuous blinding migraine, which is appalling all by itself even without the risk of it becoming encephalitis then permanent brain damage. (Yeah, I’ve had measles. Never been so sick in my life.)

    Similar with whooping cough. The sound of a baby desperatelty gasping for breath isn’t one you forget, but fortunately in our society most people have never had to hear it.

    Ignorance of the horror of these scourges of humanity that we fought back to the brink of (the developed) world is mostly a side effect modern-era rich country privelege. However, there is a segment of the anti-vaccination community that does a nice line in mysogyny as a free gift to parents–I’ve heard people say that parents vaccinate their kids because they are selfish careerist women who don’t want to have to stay home for 2 days to look after their child with measles, and the reason governments strongly encourage vaccination is to avoid the hit to the economy taken by parents taking a day off work. My God, the number of things wrong with that argument…

  • http://inquisitiveravn.livejournal.com/ Inquisitive Raven

    O Rly?

  • Anonymous

    Someone I know elsewhere in cyberspace mentioned recently that the friend of her husband had told him that her child had been desperately ill with measles. Apparently he was so shocked that he just blurted out, “You didn’t vaccinate?” before he even offered sympathy.

    To her credit, the child’s mother admitted that they hadn’t, but that she’d tell everybody from now on that they had to do it. I suppose if that’s what it takes…

  • Sgt. Pepper’s Bleeding Heart

    Someone I know elsewhere in cyberspace mentioned recently that the friend of her husband had told him that her child had been desperately ill with measles. Apparently he was so shocked that he just blurted out, “You didn’t vaccinate?” before he even offered sympathy.

    I feel like I need to defend my parents for a sec, whom none of you would know if you fell over them. They’re very much pro-vaccination, but when the time for my measles shot was due some family shit was going down that required dealing with so they just forgot. They were horrified when I got ill over a decade later.

  • P J Evans

    isn’t some of their agenda’s appeal due to lack of experience with the diseases that vaccines prevent?

    Maybe, but they would certainly have met some of  those diseases themselves – and it isn’t like all those vaccines suddenly showed up on the same day thirty or so years ago. (From my own experience, I wouldn’t wish measles, mumps, or chickenpox on anyone but, possibly, politicians, and everyone I know who’s had shingles got it before they hit 60 and could get that vaccine. And rubella is a nasty thing to have around, not so much in itself, but for pregnant women, because it crosses the placental barrier.)

  • http://www.facebook.com/people/Michael-W-Busch/578120211 Michael W Busch

    P.J. Evans: “Maybe, but they would certainly have met some of  those diseases
    themselves – and it isn’t like all those vaccines suddenly showed up on
    the same day thirty or so years ago.”

    For measles at least, most of the population hasn’t seen anyone with the disease – Maurice Hilleman and company introduced the first measles vaccine in the early 1960’s, with the MMR formulation being licensed in the US in 1971.  For the last 45 years or so, the incidence of measles has been about 1% of what it was in the 1940’s and 1950’s.  People raised in the US who are having children now have never known a time when the disease was common.

    Chicken pox is certainly still in the public consciousness (I was just a couple of years too old to get the vaccine before I got the disease), but it is nowhere near as bad of an illness as the other diseases.  If all someone has seen is chicken pox, they get the dangerous false impression that vaccines are to prevent a couple of days at home; rather than the truth that Hilleman’s work has saved hundreds of millions of lives.

    As an academic, this lack of public understanding seems like a failure in education to me. What can we do to change it?

    @Sgt. Pepper: I hadn’t heard that line before.  But I stopped listening closely to the anti-vaxxers as soon as I worked out the consequences of what they were doing.

  • http://www.facebook.com/people/Michael-W-Busch/578120211 Michael W Busch

    Fred, I’m wondering something here:

    You’re describing the anti-vaccine crowd (or at least some significant fraction of it) as practicing willful ignorance and deliberate rejection of reality.  That is true at some level, but, trying to be charitable to the anti-vaxxers: isn’t some of their agenda’s appeal due to lack of experience with the diseases that vaccines prevent?

    Most living Americans have never seen a case of measles – even with anti-vaxxers having caused some clusters of cases to be ten times larger than they should have been.  The same for mumps or pertussis and so on.  Perhaps not knowing exactly how terrible the consequences of not vaccinating can be makes the idea of removing any wrongly-perceived risk of vaccination having harmful side-effects more appealing.  I do not know myself, because both my parents and my teachers taught me epidemiology very early on, and because I had pertussis in elementary school.  Spending a week in quarantine coughing and drinking foul-tasting erythromycin solutions is a powerful lesson.

    This leads to something else that I think needs to be emphasized more in public discussion of vaccination: herd immunity.  I had had the DTP vaccinations, but got pertussis anyway because the vaccine isn’t 100% effective.  It doesn’t need to be – it just needs to be effective enough and administered to enough people that anyone with the disease spreads it to on average less than one new person.  Then instead of an epidemic, the worst that happens is localized clusters of infections.  

    The anti-vaxxers aren’t numerous enough to cause a breakdown in herd immunity except in some small groups of people, which is good, but they are still harming others by their decision to not get themselves or their children vaccinated.  For example, seasonal influenza vaccination in urban areas saves one life for every four or five hundred children that are vaccinated – mostly because the kids aren’t infecting their grandparents or other older people who are more likely to die from the disease (herd immunity to influenza needs to be renewed every time a new strain shows up).  So never getting a flu vaccine is equivalent to deciding to take a couple of percent chance of somebody else’s grandmother dying. 

    Can willful ignorance extend to ignoring what measles (or pertussis or influenza) can do to a person?  I’d like to think that lack of knowledge, rather than malice or desperation, is to blame.  But maybe I’m wrong.

  • http://feathertail.livejournal.com/ Feathertail

    I’m autistic, and I really don’t like seeing it taken for granted that autistic people are “suffering.” If people really wanted to alleviate our disability, they’d accomodate it the way they do wheelchairs. The hysteria over finding a cure, or a cause, is abusive and negating and a way of telling us that we have no right to exist.

    I don’t like having meltdowns and sensory overload, but I don’t want to live in a world where the only way to get past them is to take a pill that makes me not me anymore. I’d rather live in a world where I can excuse myself from a social situation before I overload. Where I’m not in danger of having the police called on me, and getting suffocated because they don’t know how to deal with people like me.

    Where it’s not taken for granted that my parents can abuse me. That they have to abuse me, because if they don’t I might grow up to be someone Not Like Them.

    In my personal, subjective experience, the worst that I’ve ever suffered was when they did that.

  • Anonymous

    You know, I really don’t want to start a flamewar, but I really really don’t want to let your opinion be pointed to as the definitive word on the subject.
    If people really wanted to alleviate our disability, they’d accomodate it the way they do wheelchairs. The hysteria over finding a cure, or a cause, is abusive and negating and a way of telling us that we have no right to exist. ….  I don’t want to live in a world where the only way to get past [social meltdowns] is to take a pill that makes me not me anymore.As an Aspie, what I find abusive and negating is people telling me that I’m not suffering — or, perhaps “limited” is the better word. That I am who I am and I should accept that and work for social “accommodations” instead of hoping for a cure.

    Honestly, I *don’t* want to exist — not the way I am naturally. I’d rather be able to read people than not; I’d rather be less socially awkward than more; and I’d rather be able to have a theory of mind than not. I group autism with nearsightedness as things I’ll treat in any way possible. And I don’t see that as oppressive in the slightest. If you want to define yourself in that way, have fun. But if being me isn’t fun (and I don’t believe being autistic, or bipolar, or ADD is), then I’d rather change myself than hope that society will.

    At the end of the day, I have goals in life. And the most frustrating thing about my goals is that I know that there’s a good chance I’ll never be able to accomplish them — not because I’m not smart enough or driven enough but because I’m not socially adept to achieve the sort of career I’d like to have. If there were a cure, I’d take it in a heartbeat, because as much as some would like to pretend otherwise, society isn’t going to change enough in my lifetime to accommodate me as is.

    So count me down as a vote for a cure. I’d take it in a heartbeat and never look back — because I see myself as a geeky female scientist, not as a nearsighted bipolar Aspie.

    (This is all beside the point, of course. People who are severely autistic typically do not seem to be happy much of the time; from the perspective of the parents, this is seen as suffering. Whether or not Fred intended it as such, “suffering” definitely describes the perception of the parents — although I would propose the phrase “apparent suffering” to prevent this from distracting from the point of Fred’s essay.)

  • Anonymous

    I’m autistic, and I really don’t like seeing it taken for granted that
    autistic people are “suffering.” If people really wanted to alleviate
    our disability, they’d accomodate it the way they do wheelchairs.

    “Why shouldn’t I put displays in the middle of the aisles? Why should I care that wheelchair users can’t get past the displays? Nobody in wheelchairs visits this store anyway.”

    Which is to say, I agree with you, Tachyon, but it’s a fucking ableist world and I don’t have the faintest idea how to begin fixing that.

  • http://www.facebook.com/profile.php?id=752002772 Andrew Glasgow

    “Why shouldn’t I put displays in the middle of the aisles? Why should I care that wheelchair users can’t get past the displays? Nobody in wheelchairs visits this store anyway.”

    Did someone actually say that to you? O_o

    The stupid, it burns!

  • Anonymous

    No, but words to that effect have been said to people I know.

  • Nix

    Agreed. I’ve met a lot of children and adults with autism and Asperger’s (I’ve got Asperger’s myself), and except in the teenage years — when we are rendered utterly miserable by our age peers, who are mostly not our peers in any other way — if we are allowed to focus on our areas of interest, we are *happy* by and large[1]. We do not necessarily suffer because we have autism: it is not like cancer or schizophrenia or even dementia (which does not come with pain but may come with the terrifying knowledge that your mind is slipping away from you). Any suffering comes from failed attempts to fit in, or is inflicted by those around us. Yes, we are limited: yes, we need to adjust our environment a lot in
    order to be happy. In this we are just like other human beings: we just
    have different limitations and a different preferred environment.

    Sure, we are not normal — my highest joy comes from software
    development rather than, I don’t know, doing things with a lady friend
    — but who is to say that the joys we find are less real than the joys
    normal people find? One thing’s for sure: stick needles into someone for
    horrible unnecessary medical procedures and they will be unhappy.

    As far as I can tell, parents of miserable autistic children want ‘normal children’ more than they want the children they’ve actually got. So they try to force their children to *be* normal, banning them from focusing on their interests and trying to force them into social activities which they don’t understand at best and hate at worst, probably also in environments surrounded by lots of noise and activity to add sensory overload to the mix. Unsurprisingly this makes them very unhappy.

    The real tragedy of all this is that this man is forcing his child through all this dangerous nonsense in order to fix perceived ‘suffering’ which is probably entirely avoidable through completely normal means: just treat your child like a human being capable of finding his own joys.

    [1] a poster further down said that people with severe autism did not ‘seem to be happy’. In my experience this is largely (if not entirely) incorrect. Relying on external emotional signals is a bad idea: that’s one of the areas that is impaired in severe autism.

  • MaryR

    I have friends who believe that vaccines are bad for their children despite the fact that the autistic link is no longer considered viable. The reason that they continue to reject vaccines is because their child could have a bad reaction (the rare case where someone has an adverse reaction to a vaccine) and/or because the drug companies have a vested interest in selling vaccines even if they are harmful for people (ie: the tobacco agenda).  They no longer quote the autism link anymore – but still reject all vaccines for their children.  I worry even more when I know that their children could be traveling to India or China without getting even basic protection.

  • Nicolae Carpathia

    [1] a poster further down said that people with severe autism did
    not ‘seem to be happy’. In my experience this is largely (if not
    entirely) incorrect. Relying on external emotional signals is a bad
    idea: that’s one of the areas that is impaired in severe autism.

    This, this, this, a thousand times this.

    Slipping Out-Of-Character for a moment: When I was growing up, I couldn’t even count the number of times people assumed I was morose when I was really quite fine, and apparently I’m not the only Aspie whose “neutral” facial expression reads as “angry” to other people.

    I’ve gotten better at this as I’ve grown, but it takes conscious effort (I have to remember to hold my eyebrows higher so it doesn’t look like I’m scowling all the time, which gets kind of sore after a while, but it’s worth it), and it’s still closer to mimickry than actually projecting emotional signals on my own.

    Then again, I have a mild enough case that, if I concentrate, I’m able to do things like maintain eye contact when I’m speaking with people. It does take a lot of effort, but plenty of people on the spectrum can’t even do that if they put all their focus into it.

  • Samantha C.

    I’m not even on the spectrum but I can sure relate to the neutral face thing. People all through elementary and middle school used to tell me to cheer up and smile, when I was feeling perfectly fine and just letting my face relax. “relaxed” for me is droopy at the corners of the mouth so maybe it looks a little like a frown, but even when i’m thoroughly happy, I can’t smile all the time. My cheeks get tired and I go back to neutral.

  • http://willbikeforchange.wordpress.com/ storiteller

    What is your opinion on autistic people who have nearly zero ability to communicate with the outside world?  My mom is an elementary school speech/language pathologist who works with a wide variety of autistic-spectrum kids.  Some of them have been lovely children, with their own unique, interesting personalities.  But there’s one little girl that I will always remember.  She was if not completely non-verbal, then had a very low verbal capacity, no higher than a toddler at 7-8 years old. She may have used a picture-board (not a computer – this was about 18 years ago), but I don’t remember. When she couldn’t express herself, she would throw violent, impossible to understand fits, where she engaged in serious self-harm.  If the teacher didn’t get to her in time, she would bite herself on the arm so hard to draw blood and cause semi-permanent scars.  In her case, I can’t imagine that she wasn’t suffering. 

    Of course, not all people on the autistic spectrum are even close to that level. When it borders on a “difference in seeing the world,” I can certainly see wanting to preserve that difference while still being able to function in the world. But I can also see why a parent of a child with that level of autism would want so badly to allow their child to communicate.  It does not offer any excuse at all for the anti-vaxxers, abuse, or even just refusing to accept that this is who your child is.  People need to love and treat their children with kindness no matter who they are.

    But now remembering that little girl, who I met when I was not much older than she was, I can see why people would want to prevent their child from having that type of life.  Thinking back, I still wish I could do something for her and I know my mom tried as hard as possible.

  • Pthalo

    This is a reply to a lot of people, but this first paragraph is for storiteller, so that’s who i’m replying to. Here is the blog of an autistic woman who cannot speak, who has severe autism, who was institutionalised for large portions of her life, but has learned to type. She has a lot to say about the world and her life. I’ve been following her blog for years and it has done me a world of good: http://ballastexistenz.wordpress.com

    Someone below, forget who it was, sorry, argued that sometimes institutionalisation is the kindest method. Kindest for whom? An institution is a dangerous place to be if you are unable to speak, you’re at serious risk of being abused, if not by staff, then by other patients, and not being able to tell anyone about it. Imagine a person who is looking for a victim who won’t be able to report them and who likely won’t be believed if they do. These types of people generally prey on people who cannot fight back, and the hierarchies of power within institutions is also appealing to them.

    And someone else keeps bringing up cochlear implants (CI). The use of CIs is actually protested by a lot of Deaf people. For one thing, it is irreversible. Also, it destroys your residual hearing. Most Deaf people are not profoundly deaf — they can hear some sounds, if they are loud enough and are within certain frequency ranges. Getting a CI destroys that hearing. If you take the CI out, then you can hear absolutely nothing. They come with side effects like seizures and migraines. And they don’t make you hearing. CIs and hearing aides do not work like lasic surgery and eye-glasses. Hearing aides amplify sound, but the sound is digitalised and does not sound the same as what a hearing person hears. CIs work better than hearing aides, but they still do not make you able to hear just like a person with no hearing loss. A better comparison for the CI is to imagine that you are nearsighted, so they remove your eye completely through surgery and attach a bionic eye with a camera. The image the camera produces is a bit fuzzy and pixilated. Some of the colours are slightly off, and the image doesn’t update as quickly as it would for normal vision. You can see better than before the surgery, but you are still impaired. And now you have migraines and seizures too. (Granted, not everyone gets side effects from CIs, but side effects are common).

    If you were legally blind, and had learned to use a white cane to get around and to read Braille and you were offered the chance to get a bionic eye which would make you see better, but still not well, and the image would be pixilated and jerky, and there was a significant chance that you’d end up with migraines, would you take that opportunity? Or would you decide that you’ve been getting along just fine with the cane?

    Sign language is, full stop, the best approach for deaf children. It’s a language they can learn easily in those formative years when their brain really needs a language. Once they’ve learned sign, it’s a lot easier to learn to speak, because they already know one language. Learning to speak is very hard, especially if you don’t have any language at all. 

    However, learning to sign is a huge commitment for the families involved. A poor, working class family is unlikely to have the time or the money to drop everything and become fluent in sign language, and for the kid to learn sign language, they need to be exposed daily to people who are fluent in the language. But then, a poor family probably wouldn’t be able to afford cochlean implantation either. 

    The problem with a lot of what people are saying here seems to be “disabled people have trouble getting around in society because society is not set up for disabled people, so we should change the disabled people to make them not disabled, even if those changes have severe side effects.”

    What really needs to change is society. And it is changing, albeit slowly. Businesses are putting in ramps so that people in wheelchairs can enter them, instead of saying that people in wheelchairs don’t need to buy their wares. Here in Hungary, one of the major banks has implemented a policy that each county should have at least one bank where there is an employee fluent in sign language who can give financial advice to deaf customers. 

    The problem isn’t “disabled people are unemployable and should be made not disabled.” The problem is that most disabled people do have skills that would make them an asset to one company or another, but they are not being employed because of discrimination. There are also people who are truly not employable, and instead of seeing them as valuable people for what they are able to do, we see them as useless hangers on, and begrudge them their disability checks, which are usually small enough that they have budget quite tightly.

    Why does the disabled person have to be the one to change? Why can’t other people be required to be more accomodating?

    If you’re a disabled person who wants a cure for yourself, that is fine — you have your reasons, you know your situation better than someone on the outside does, and your desires are valid. My problem is mainly with people on the outside looking in and saying how pitiful life is for us poor disabled folks. If you’re on the inside looking out saying you wish things were different, then I hear you, even if we seem to be on different sides, you saying you want to be different personally and me saying i want the rest of the world to treat like us human beings.

    I have chronic migraines which are quite disabling and i would be happy if I were cured of them. I also am multiple — I have multiple personality disorder (currently called dissociative identity disorder in the US, but i prefer the term used in other parts of the world). “Curing” me of this would make my life simpler in some ways, but it is something I am very adamant about not wanting. I have a hearing problem (capd) which I’m on the fence about whether I wish it could be cured, but I’m mostly on the side of not wanting it cured.

    Also, I have had chronic PTSD for over 16 years. Do I wish that I didn’t have it? Well, sometimes. Do I wish that the things that happened to me never happen to anyone else ever again? Absolutely. Do I wish that the things that caused my PTSD never have happened to me? No, actually. They were very terrible things, but I cannot imagine who I would have been had those things not happened to me. Because of the extent of the abuse, I can only conclude that I would have ended up a very different person than I am today. And i don’t know if i would have ended up a better person. perhaps i would have been more light-hearted, more flippant, less caring. perhaps i would have been bolder, more outspoken. Perhaps I would have wound up monolingual. Who knows? I am who I am, and everything that has ever happened to me has shaped me and changed me, for better or for worse. Maybe I would like the me from a different universe who was not damaged to the degree that I was damaged, but maybe I wouldn’t. Most likely, I wouldn’t recognise her and that’s the key.

    If you’re a non disabled person saying that you can’t imagine why a deaf person, a blind person, an autistic person, or whatever else, would not want to be cured, well, there’s a lot of people who say things like “i’d rather die than be disabled” or “disability is the worst thing that could happen to me”, and when you say those things, you are othering disabled people, marginalising them, heaping pity on them, telling them you are so horrified at their very existence that you just cannot imagine. And it’s insulting, so please stop.

  • Nix

    (I hope this accepts HTML tags. If not, the next para is a quote.)

    The problem is that most disabled people do have skills that would make
    them an asset to one company or another, but they are not being employed
    because of discrimination.

    That’s not all it is. Asperger’s is a good example: if we happen to be interested in the right things, we are major assets to companies in that area — but we don’t quite act like normal people, and normal people have to learn to compensate and adjust to us. The more severe the autism/Asperger’s, the larger the adjustment. It is likely that eventually the magnitude of the adjustment simply gets too large to be worth it.

    (Plus, of course, we’re not all interested in the right things. Not every possible focus area has people willing to pay you to be interested in it.)

  • Pthalo

    That’s a good point, Nix, and one I knew, just managed to skip in the post somehow (it was too long as it was). Thanks for bringing it up. 

    Employability will depend a lot on interests. My step-brother who is autistic works at a copy shop, and he seems happy working there. But I remember how fascinated he is with maps and the level of detail he has memorised for the areas he’s studied and I get this vague feeling that if he could do something in that area, or in another area of interest he might enjoy it even more, if he were in an environment where people understood his autism and what his needs were. I’m not really sure what kind of job that would be — I have a photographic memory myself and do have the layout of my town memorised (down to the sidewalk quality on each street) but it’s not really an area of interest of mine and I’ve never looked at what jobs are available to a person that really likes maps. (It’s funny, you know. I’m not autistic, but I have a photograhic memory, synaesthesia, capd (brain has trouble processing speech), sensory issues (smooth textures give me a fight or flight response), and some other issues as well. These things are all common among autistic people, so I can understand a lot of what autistics have to say about the aspects of their experience that I share — I just lack that extra step called autism)

    Anyway, my step brother is just one person with autism; I know it’s different for everyone and that not everyone can work, but if a person is able and wants to, it would be nice if they could find work in their area of interest, and if people could be accomodating. I really think that neurotypicals should make an effort to meet the neurodiverse half way. It’s often the case that the neurodiverse must expend a great deal of effort to act as normal as possible if they want to keep their autonomy, and that uses up a lot of spoons that could be spent on more important things.

    For example, take stimming. I don’t really see the problem with it or why it should be stopped at all costs. Most stims don’t harm anyone — at worst they may be distracting to coworkers — but the autistic person could be provided with a quieter place for them to work where they can stim while they work without distracting others and others won’t be constantly disrupting their chain of thought. Other issues like “don’t make excessive eye contact with me because it makes it harder for me to formulate my thoughts into words” and “i prefer not to be touched” or “I need help knowing what my next task is and what I should be doing at certain times of the day” or “I prefer to follow the same schedule everyday and to be warned in advance of changes.” or “you can talk to me, but if something is important, I need it in writing as well, because I sometimes have trouble processing speech” should all be fairly easy to accomodate. Not everything can be accomodated, but I think there are a lot of things that don’t have to be issues, but they become issues because the neurotypicals involved don’t know what the autistic person needs from them and the autistic person may not be able to communicate their needs clearly. 

    Also, even outside of your areas of interest, most autistic people are good at focusing on tasks (if they’re not in an overloading and overwhelming environment, of course), oftentimes a lot better than neurotypicals. You may not be able to do it all the time, and you may get distracted by something you find more interesting, but overall, most autistic people have some very valuable strengths which, if pitched right to the company, can make you as good a hire as another person. 

    I also think that people who cannot work are valuable and have important strengths, even those who are unable to interface with neurotypicals at all. When I say “important” and “valuable” I’m not just talking about employment.

    I do think things are getting better in that regard overall as people gain awareness about autism, but I also know that in this job market it is also a lot harder for everyone with the slightest difference. 

  • Nix

    “you can talk to me, but if something is important, I need it in writing
    as well, because I sometimes have trouble processing speech” should all
    be fairly easy to accomodate

    Alas, you underestimate the stupidity of some managers. I’ve had more than one manager who insisted vehemently that it was absolutely impossible to do any sort of software design except in face-to-face unminuted meetings (mostly because they were incapable of quoting properly in email and had never even heard of things like IRC). Of course with no record of what was discussed this meant they could often railroad everyone into doing things their way, but it made it bloody difficult to remember what on earth we were supposed to be doing, but of course that was always our fault, never theirs. Very convenient — for them.

    Attempting a disproof of the axiom that design requires face-to-face meetings by pointing at massive pieces of software which had been produced almost entirely over the Internet did not faze these people: they *knew* they were right, and mere facts would not dissuade them.

    (However, this caused everyone else problems, not just the autistics. If the managers in question hadn’t been so senior they’d probably be gone by now, as they found it almost impossible to adapt to things like global development teams without spending all their time on airliners.)

  • storiteller

    Judging from the blog author’s experience you refer to, it may be that the absolute best thing for the most severely autistic people is the development of new forms of communication. There may still be some autistic people who can never truly communicate (especially if it is also paired with a developmental disability), but the way modern technology is going, I hope there will be more stories like that blogger’s where she found some sort of solution that works for her. Perhaps that little girl would no longer self-harm if we could find a way for her to express herself otherwise. Besides, finding new and innovative communication methods could also potentially be able to help those with Alzheimers and severe physical disabilities (like Stephen Hawking).

  • Pthalo

    I agree. If speech isn’t working for a child, maybe sign language will, or writing, or a picture board. There are people with cerebral palsy who communicate with a laser pointer strapped to their head which they use to point at letters on a chart. Maybe the picture board will lead to other methods of communicating down the track. maybe the kid can be taught morse code. All methods should be tried. 

    It is understandable that a parent would be frustrated with not being able to communicate with their children. And it’s possible that some of that girl’s self-harm was due to frustration over not being able to communicate her needs to the people she loved.Also, one thing Amanda (the author of the blog i linked you to) mentioned at one point was that when she’s with other autistic people, they can communicate in other ways…she mentioned being upset and her friend tapped her fingers on some wood in a certain pattern and they tapped back and forth for a while, not in a code of some sort that could be translated easily (if at all) into English but it was a gesture of comfort and consolation to a friend who was upset, carrying the same meaning and understanding that a hug might. and that got me to thinking that in addition to trying to teach the child ways they can communicate with the world around them, it might be useful for the parents to have help and guidance learning to communicate with their child in ways that are meaningful to them, maybe by reciting prime numbers together with the child, if the child likes prime numbers, or what have you. I’m not imaginging a “37! 11! 103!” “43! 2! 7!” “Aha! you want milk!” sort of exchange, but more just a bonding sort of thing. (you notice i stick with small primes. i don’t like primes. they aren’t divisible by 2 and they are not perfect squares. this makes them distasteful. so i only have small primes memorised). if the kid’s interested in trains, then trains it is: reading books about trains, toy trains, trips to the train station, train timetables, maps of train networks. The child may find it easier to communicate about trains.But more than that, a sort of learning of the child’s signals. Learning to detect signs of a meltdown before the child gets overloaded. Identifying situations that the child gets overloaded in. Identifying what the child looks like when it’s happy — he or she may not have typical facial expressions, she will have a set of her own. Learning that she’s spinning around in circles to express her joy or that he’s frowning because he’s concentrated and absorbed in an interesting task, etc. can help a parent communicate with the child. i’d probably even recommend spinning in circles near the child when the child does it to show that you accept the child’s expression of delight. you know?

    like everything, communication is a two way street. autism is a disability that can make communication very difficult. so is deafness, for different reasons. If your child is diagnosed as deaf, it can be good to find a deaf adult who can explain to what you it’s like to be deaf and what they wished their parents had done for them — and to hear from deaf adults who went to deaf schools, deaf adults who were raised with speech only. I think it would be similarly good for parents of autistic children to be connected with autistic adults on various parts of the spectrum and to listen to what those autistic people have to say. some of the information will be conflicting, but it would be more helpful than just guessing what it must be like for an autistic person without actually talking to one.

  • P J Evans

    Jobs for people who like maps -try your local utility companies, as well as whatever your local government calls its surveying department. They might not have anything, but people who are good with maps aren’t that easy to find, either.

  • Nix

    Yes, definitely. I know a *lot* of people on the spectrum who say that finding the Internet was the single best thing that ever happened to them. (I’m one.)

  • Anonymous

    My elementary school years, while not being anywhere near as bad as that girl’s were, mostly consisted sheer, unrelenting misery inter-spaced with anxious terror. I had sensory meltdowns well into 4th grade, and was in mandatory counseling for a few years. The average elementary school is the absolute worst place to send a kid with sensory processing difficulties or delayed communication skills. I got better once I got away from the brightly colored classrooms and shrieking children that define k-5 education. She’s might be doing better than you think.

  • Anonymous

    Strangely I also have to think about the story about the old woman who is warned that a flood is coming and kept saying God would rescue her.

  • Anonymous

    “Think of it, if you had no additional evidence or proof you could
    understand, would you choose to believe the self proclaimed scientist
    who said your child COULD be saved, or the one who said they COULDN’T?”

    The Skeptic’s First Commandment: you are not allowed to choose what to believe.  That way lies more suffering for your child.

    Having said that, it’s certainly understandable to choose “stupid plan” over “sit on your hands and despair.”  But I don’t think those are the only two options for Kent and others like him.

  • Anonymous

    The Skeptic’s First Commandment: I am not allowed to choose what to believe.  That way lies more suffering for my child.

    The Structuralist / Behavioralist Corollary:  You have no idea.

    Ironically, if you’re going to make sure that what you believe is actually the “truth” you’re going to have to make much more of a conscious effort to believe it.  Your monkey apophenia is gonna get the better of you every time otherwise.  It’s evolution baby.

  • Anonymous

    Like many commandments, more honored in the breach than the observance.

  • Anonymous

    The Skeptic’s First Commandment: I am not allowed to choose what to believe.  That way lies more suffering for my child.

    On a related note, Ben Franklin on vaccination (which was far more dangerous in his time than even the anti-vaxxer’s worst fears):

    In 1736 I lost one of my Sons, a fine Boy of 4 Years old, by the Smallpox taken in the common way. I long regretted bitterly and still regret that I had not given it to him by Inoculation. This I mention for the Sake of Parents who omit that Operation on the Supposition that they should never forgive themselves if a Child died under it; my Example showing that the Regret may be the same either way, and that therefore the safer should be chosen.

  • Anonymous

    I have OCD, but not autism.  I can’t speak for autism and it may very well be different from what I’ve experienced.  But I want both a treatment for my OCD and a better general understanding/accommodation for it.  I don’t find these two things to be mutually exclusive, especially as long as treatment is voluntary (treating children is a different matter but even they can often express if they want treatment or not).  I would love to be able to tell people about my OCD the same way I tell them about my hypothyroidism and not have them judge or misunderstand me.  I would also love accommodations for the few things that I just can’t deal with.  I would love for people to stop assuming I’m a germaphobe, and I would love for people to stop staring at my tics.  But I also love my CBT and how effective it has been.  I love the way I can feel now that I can deal with my anxiety.  I love it that I can clean my cat’s litter box with only a little bit of anxiety and not overwhelming anxiety like I used to have.  I love it that I no longer spend money on a supply of cheap rugs to act as markers for “contaminated” areas of my floor (which at one point took up nearly half my apartment).  So maybe it’s not analogous to autism and maybe I’m completely off-base here, but I think we should strive for (voluntary) treatment/cure AND better accommodation and understanding and awareness.

  • Anonymous

    I think we should strive for (voluntary) treatment/cure AND better accommodation and understanding and awareness.

    I would agree, but if we find an effective cure for autism, it’s gonna be forced on autistic kids before they have the chance to figure out who they are with autism and whether they like that person enough to decline the cure or dislike that person’s limitations enough to take the cure.

    On the flip side, LMM22 has a point…ethical dilemma, yay. Can everybody agree that better accomodation and understanding and awareness would be a good thing, though?

  • Anonymous

    I should leave this thread. It’s just that it touches on a lot of pet peeves of mine.

    if we find an effective cure for autism, it’s gonna be forced on autistic kids before they have the chance to figure out who they are with autism and whether they like that person enough to decline the cure or dislike that person’s limitations enough to take the cure.

    And this is a problem why, exactly?

    Look: when I was in second grade, it became clear that I was nearsighted. I didn’t want glasses at the time. I threw a temper tantrum (bipolar, yay!) over it. The chalk on the chalkboard should have had better contrast. The teacher should have written bigger letters. The world should have adjusted for me.

    And then I got glasses. And, you know what? I’m fine with them. They’re annoying at times — especially in this weather, where they’ll fog up when I go outside — and I have a pair of contacts that I wear to dates and other situations where I want to look nice, but overall I don’t consider myself to have a visual disability. And I don’t feel that there’s a fundamental part of my life that’s missing, either.

    Maybe that’s an entirely different story — but, given the vocal opposition of the Deaf community to coccular implants and the like, I don’t think it is. I think the only reason why we think that the two situations are different is because glasses have been around for centuries and contacts for at least two generations, so (at least in our culture) no one would dream of not wanting to have their vision corrected, whereas medical treatments for mental disorders and complete hearing loss are fairly rudimentary and young.

    Honestly, given the choice, I’d have been cured at birth. A lot of social connections are made during childhood, and I missed out on most of them. I’m hitting the age where a lot of my friends are or are getting married, and I’m sitting on the sidelines — neither of the relationships I’ve been in have lasted a year, let alone two or five or ten. Many of them are getting married to people they met in college — who they met and connected with because they experimented with dating and relationships during middle and high school. And they were able to do *that* because of the social skills they picked up in elementary school….

    A disability is a disability. “Natural” personalities are overrated.

    On the flip side, LMM22 has a point…ethical dilemma, yay. Can everybody agree that better accomodation and understanding and awareness would be a good thing, though?

    Yes, but as I said above, it only goes so far. The ADA is fantastic if you’re trying to get a low-level job. It’s useless if what you’re aiming for is a high ranking position at a company, or a professorship, or any sort of other career. No matter how great the cultural awareness, if you want to get a high level job, you need to be perfect.

  • http://brandiweed.livejournal.com/ Brandi

    It makes it very hard to sympathize with someone when you know that they’re possibly endangering or harming their own child.

    And even harder when they’re possibly endangering or harming others as well. Herd immunity is not magic. (And apparently not enough people know about Gene Tierney’s story.)

  • Shallot

    Um, can anybody recommend a good Autism Spectrum 101 link, like I’ve seen for Feminism 101, etc?  I’m really interested in this discussion, but I’m aware of how little I really understand, and I don’t want to hurt anybody or inflame the conversation.

  • Leila

    I don’t know about an autism spectrum 101 link, but their are several websites out there on Autism and a good specialist from australia by the name of Dr. Tony Atwood has a lot of info on his site. I think you can just seach using his name, unfortunately I don’t have sites off the top of my head just now:) There’s ‘autism speaks’, ‘autism society of america’, and other non profit groups as well:) Just plug the search terms in and hopefully that will get  you going:)

  • Leila

    I don’t know about an autism spectrum 101 link, but their are several websites out there on Autism and a good specialist from australia by the name of Dr. Tony Atwood has a lot of info on his site. I think you can just seach using his name, unfortunately I don’t have sites off the top of my head just now:) There’s ‘autism speaks’, ‘autism society of america’, and other non profit groups as well:) Just plug the search terms in and hopefully that will get  you going:)

  • chris the cynic

    And this is a problem why, exactly?

    For the same reason it’s a problem saying that introverted people should be cured.  Or that Democrats should be cured.

    It isn’t you place to decide that a certain class of people should no longer be allowed to exist because you don’t want to be one of them.  It isn’t your place to decide that only the people who meet your standards of perfection should be allowed to continue without forced modification.

    It isn’t your place to make people better.

    You would have been cured at birth, good for you.  I would rather be allowed to exist as I am.  (Depression on the other hand, that I would have cured at onset.)

    It is one thing to say that you want a cure for yourself, it is another to say that it is ok to force it on others.

    Also, for some people being on the spectrum is a benefit.  Not a disability, an asset.  Apparently a disability isn’t always a disability.

    One last thing:
    no one would dream of not wanting to have their vision corrected
    My understanding is that this is completely false.  There are absolutely some blind people who aren’t interested in getting cured.

  • Anonymous

    It isn’t you place to decide that a certain class of people should no longer be allowed to exist because you don’t want to be one of them.  It isn’t your place to decide that only the people who meet your standards of perfection should be allowed to continue without forced modification.

    It isn’t your place to make people better.

    You know, if you’re not going to bother reading my entire post, I don’t know why I’m going to bother replying. The point of my post was not that I was deciding that a “certain class of people shouldn’t be allowed to exist.” The point of my post is that we — as a society — have already declared that certain people — those with minor vision problems, for example, or speech impediments, or bad teeth — should be improved, and that, not only are such changes accepted, but the people who are changed typically don’t even recognize that they have what might be considered a disability. We have a term for people who don’t give their children glasses: we call them bad parents. (Or poor, I suppose, but, when glasses are available, those who do not provide them to their children are rightfully looked down upon.) You would have been cured at birth, good for you.  I would rather be allowed to exist as I am.  (Depression on the other hand, that I would have cured at onset.)

    Except that I’ve seen “disability rights activists” who have insisted that depression is part of who depressed people are and that depression shouldn’t be cured. Where do you draw the line? If I don’t get a say in it, neither do you.

    There are absolutely some blind people who aren’t interested in getting cured.

    That’s great. They are massively outnumbered by the people out there who wear glasses, or contacts, or have LASIK surgery. Should we insist that children shouldn’t be given glasses until they come of age because they might want to be the way they are?

  • Tonio

    The point of my post is that we — as a society — have already declared that certain people — those with minor vision problems, for example, or speech impediments, or bad teeth — should be improved, and that, not only are such changes accepted, but the people who are changed typically don’t even recognize that they have what might be considered a disability.

    Without defending what Chris originally wrote, inherent in that declaration by society is the idea of deciding what is best for people with those disabilities. While it does go against the principle of the individual being the foremost authority on what is best for hirself, in such cases the deciding is a defensible one. With depression, society does have an interest in curing it, partly because it has consequences not only to the depressed person but also for the people around hir. Some sort of equation should be involved in society’s decisions about disabilities. Personally I’m on the fence about hypothetical cures for certain disorders on the autism spectrum – in some instances the disorders produce behavior that is merely at odds with some social norms.

  • http://dpolicar.livejournal.com/ Dave

    > While it does go against the principle of the individual being the foremost authority on what is best for hirself,

    If Sam claims to desire some future state, or behaves in other ways that signal Sam’s preference for that state, but Sam also performs actions that are incompatible with achieving that state, or claims to desire to perform those actions, it’s not enough to say “Sam is the foremost authority on what is best for Sam.”

    If I want to do what’s best for Sam, even if I treat Sam as the foremost authority on that subject, I need to somehow decide how to reconcile the mutually exclusive messages Sam is communicating  about what is best for Sam.

  • Tonio

    If Sam claims to desire some future state, or behaves in other ways that
    signal Sam’s preference for that state, but Sam also performs actions
    that are incompatible with achieving that state, or claims to desire to
    perform those actions, it’s not enough to say “Sam is the foremost
    authority on what is best for Sam.”

    Would you explain that? I’m not sure of your point. I’m saying that in general, the burden should be on any claim that Sam doesn’t know what is best for him. And the burden is also on any claim that letting Sam decide this will lead to consequences for others as well as for himself. If I read your example correctly, that standard would be met if Sam’s actions have consequences for everyone including himself. My point is not that people should never decide what is best for others. I’m saying instead that where disabilities are concerned, we should recognize that such a decision is inherent, even though it’s a defensible one. It’s a serious decision and shouldn’t be made lightly.

  • http://dpolicar.livejournal.com/ Dave

    I’m not quite sure what explanation you’re looking for.

    What I’m saying is that even if (for the sake of argument) we completely ignore the opinions of everybody else and the interests of everybody else, it’s not always clear what Sam thinks is best for Sam.

    For example, suppose Sam is a habitual foozler and frequently asserts that they enjoy foozling and value their freedom to foozle and wish to continue foozling. Suppose further that foozling is reliably shown to lead to early death, and Sam frequently asserts that they enjoy, value, and wish to continue living. Suppose I have the option of encouraging Sam’s foozling or discouraging it by any degree I wish, from completely to not at all. Suppose, finally, that I am only motivated by the desire to do what is best for Sam.

    It isn’t clear to me what the best thing for me to do in that situation would be, and it isn’t clear to me on what that would depend. It’s not that Sam doesn’t know what’s best for Sam, it’s that Sam is telling me both that foozling is best, and that living a long life is best, and I know that those things are likely incompatible.

    In practice, what I do is make sure Sam has access to the data about that incompatibility, mutter something about not being my sibling’s keeper, and step aside. I suspect there are better solutions, though.

  • Tonio

    I see your point. It’s tempting to simply deem Sam as delusional for not seeing the disconnect between foozling and living a long life. But that wouldn’t be sufficient grounds for, say, making him a ward of the state or committing him to a mental institution. But the practice you outlined doesn’t feel optimal, either. I don’t know of alternatives other than staging an intervention.

  • http://dpolicar.livejournal.com/ Dave

    “Delusional” is a tricky business. Sam and I can disagree without either of us being deluded; one (or both) of us can be simply mistaken. But, OK, let’s posit for the sake of argument that Sam is delusional in this case, whatever that means. Does that mean I should no longer respect Sam’s authority about what’s best for Sam?

    My instinct is to answer “Well, duh, of COURSE it does! Sam’s DELUSIONAL!” But I’m not sure how to justify that instinct without challenging the whole idea that Sam is necessarily an authority on the subject. Why is it OK to dismiss Sam’s authority when Sam is deluded, but not when Sam is mistaken? How do I reliably tell the difference?

    Not to mention that no doubt Sam _is_ deluded, as am I, as are we all. “Human kind cannot bear very much reality.”

    I’m not sure staging an intervention gets me off the hook here either. An intervention is just a technique for presenting a selected set of facts and opinions and experiences in an emotionally compelling way with the goal of getting someone to change their behavior. I’m not sure how that particular technique is superior to all the other techniques for doing the same thing.

    (shrug) Mostly, when I dig into this question all I’m left with is the acknowledgment that we’re all part of an overlapping network of frequently conflicting value-sets, and the lines between those sets are frequently (to paraphrase Solzhenitsyn) drawn through individuals rather than between them, and can vary over time. And with the pragmatic question of what actions I can take that make the world better reflect my values at the moment. The rest of this stuff about respecting other people’s autonomy starts to feel like an intermediate solution… not wrong, but not the final word either.

  • Tonio

    I wasn’t asserting that Sam in your example was in fact delusional, merely that it was a tempting categorization. The whole principle behind respecting other people’s autonomy is that interfering in that autonomy generally causes more harm. If the person in question is harming others, then it’s easy to conclude that interfering in hir autonomy is necessary. But the Sam example is about self-destructive behavior. Was your point about varying value sets in part about the definition of self-destruction being subjective? People wiser than me have observed that it’s almost impossible for others to remove someone from a path of self-destruction, at least without forcibly restraining the person. Apparently that it’s something only that person hirself can change. What I glean from that interfering in autonomy can be done at a lower level when the person is harming others, but requires a much greater level when the person is harming hirself, and that with the latter it’s very difficult to know if one is even doing the right thing.

  • http://dpolicar.livejournal.com/ Dave

    “Delusional” is a tricky business. Sam and I can disagree without either of us being deluded; one (or both) of us can be simply mistaken. But, OK, let’s posit for the sake of argument that Sam is delusional in this case, whatever that means. Does that mean I should no longer respect Sam’s authority about what’s best for Sam?

    My instinct is to answer “Well, duh, of COURSE it does! Sam’s DELUSIONAL!” But I’m not sure how to justify that instinct without challenging the whole idea that Sam is necessarily an authority on the subject. Why is it OK to dismiss Sam’s authority when Sam is deluded, but not when Sam is mistaken? How do I reliably tell the difference?

    Not to mention that no doubt Sam _is_ deluded, as am I, as are we all. “Human kind cannot bear very much reality.”

    I’m not sure staging an intervention gets me off the hook here either. An intervention is just a technique for presenting a selected set of facts and opinions and experiences in an emotionally compelling way with the goal of getting someone to change their behavior. I’m not sure how that particular technique is superior to all the other techniques for doing the same thing.

    (shrug) Mostly, when I dig into this question all I’m left with is the acknowledgment that we’re all part of an overlapping network of frequently conflicting value-sets, and the lines between those sets are frequently (to paraphrase Solzhenitsyn) drawn through individuals rather than between them, and can vary over time. And with the pragmatic question of what actions I can take that make the world better reflect my values at the moment. The rest of this stuff about respecting other people’s autonomy starts to feel like an intermediate solution… not wrong, but not the final word either.

  • Anonymous

    Without defending what Chris originally wrote, inherent in that declaration by society is the idea of deciding what is best for people with those disabilities. While it does go against the principle of the individual being the foremost authority on what is best for hirself, in such cases the deciding is a defensible one. […] Some sort of equation should be involved in society’s decisions about disabilities.

    Perhaps. I think the entire situation is complicated by the fact that disability is itself a cultural phenomenon. By that, I *don’t* mean what disabled rights activists typically assert (e.g. that a Deaf individual is not disabled when speaking ESL, hence Deafness isn’t a disability), but that certain cures are taken for granted, often to the degree that disabled rights activists don’t even realize that they’ve personally cured something that, in another world, might have been considered part of their identity. (I remember a recent article about Deaf culture, with someone — a hearing professor — defending the opposition to coccular implants. The professor wore glasses. I suspect he would get hearing aids, if necessary, without even considering the alternative.) In other words, in the minds of most Americans (even in the minds of most who oppose cures for mental conditions such as autism), we’re not forcefully curing a disabled individual — we’re applying a corrective treatment for a standard problem. One might as well oppose giving children Band-Aids or antibiotics.

    [Line break edit. Has anyone else noticed Disquus messing this up lately?]

  • chris the cynic

    You know, if you’re not going to bother reading my entire post, I don’t know why I’m going to bother replying.

    I suppose I should start with this:

    If I don’t get a say in it, neither do you.

    That’s right, I don’t.  That is why I never said that I did.  I said that I would have cured myself of (what I consider) a disorder at onset.

    You asked why it would be a problem if other people were forcibly altered without their consent, probably without their knowledge, to remove a set of traits that many people claim has enhanced their lives.

    There is a difference there.  I’m not talking about forced normalization, you are.  I’m talking about people having personal choice, you aren’t.

    [There are absolutely some blind people who aren’t interested in getting cured.]

    That’s great.
    I just pointed out that not only did you lie, but you lied in way that denied the existence of an entire class of people simply because they disagree with you, and your response was, “That’s great.”

    That’s not great.  Treating real live people as an annoyance to be ignored and discounted simply because they don’t support your argument is not great.  It is the opposite of great.

    I’ll give you the benefit of the doubt and assume you meant, “That’s great for them.”  But that doesn’t change the fact that first you lied about them, tried to pretend that they didn’t exist, and then when you were called on it your response seems to have been that they don’t count.

    Should we insist that children shouldn’t be given glasses until they come of age because they might want to be the way they are?

    Obviously glasses can be a touchy subject.  Sometimes having glasses causes a child to be ostracized and thus they don’t get properly socialized during their crucial formative years, and that lack of social skills can in turn lead to long lasting problems.  I’d like to think that we’re moving passed that though.  So I’m going to address this question as if we live in a magical world where everyone’s experience with glasses is as rosy and trouble free as my own.

    I can take my glasses off.  Children can take their glasses off.  Giving someone glasses doesn’t make them stop being the way that they are.  Glasses are not surgically attached to children and as such a child with glasses will be fully capable of going back to how they would be without glasses any time anywhere.  In all likelihood they’ll see what it’s like to be without glasses (for however short a time) multiple times a day.

    Giving them glasses isn’t robbing them of a choice.  It is putting a choice in their hands.  They have the ability to see things both ways, and make an informed decision.  If you give small children glasses then by the time they are adults they will have years of experience seeing how things look with glasses, and seeing how they look without them.  Based on that information they can make their own choices. 

    Also, they can make a different choice every day if they so desire.  

    It’s very different.

    Also, and this could simply be because of ignorance on the subject, I haven’t heard a lot of people with vision abnormalities that can be corrected by glasses talk about how their lives have benefited from those abnormalities.  To be clear, I’m saying that I have not heard about any great benifits to having uncorrected glasses correctable vision,  I’m not saying that there’s nothing interesting about having abnormal vision.  Certainly if I take off my glasses, close my left eye, and look at a leafy tree or bush with something bright behind it (sky, window, what have you) it looks like a painting by Van Gogh which is kind of neat, but it doesn’t come up that much and (since I can take off my glasses any time) isn’t something I have lost by wearing glasses.

    By comparing it you curing autism you make giving someone glasses sound like “curing” something like synesthesia, but the truth is that it doesn’t work that way.  The ability to take off your glasses means that you never lose the ability to go back to the way you perceived things before at a moment’s notice, and the fact that glasses aren’t warn 24 hours a day 365.25 days a year means that people with glasses are never going to go long without knowing what it’s like not to have them.

    If I were to say that changing someone’s body is different from changing their mind and that the first is ok, then someone (possibly ako) would rightfully point out that I was being a complete and total asshole.

    That said, I’m having trouble taking seriously a comparison between being on the autism spectrum and having rotting teeth.  Maybe I just haven’t met the right people yet.  If I posit that for some people having rotting teeth is as much a contributor to their identity as being on the spectrum is to yours, then I could see how there might be a problem.

    That said I do see some differences.  The first is that having rotting teeth isn’t how one is, but instead something that one might become.  Parents preventing children from allowing their teeth to rot are not changing their children.  They are preventing their children from changing.  It would be more akin to preventing their children from taking a drug that causes autism than curing their children of autism.  That’s an interesting moral situation to ponder, but it’s clearly not the same.

    It is stopping the children from changing themselves until they are old enough to understand the choice and give informed consent.  Which is what I think the right thing to do in the case of children with autism would be if a cure were available.

    Something that might be getting left out when talking about glasses and rotting teeth is that even in the absence of what we would normally call side effects, things will get lost in more extreme forms of normalization.  Deaf people, for example, can feel in a way that most of us can’t.  It’s an interesting topic to read about, but for anyone who doesn’t want to look it up, here is the extremely short version:

    If the reason someone cannot hear is that their ears do not work that means that there’s still a whole fully functional section of that person’s brain that would normally be devoted to hearing.  It does not slack off.  It instead processes another form of information usually (always?) vibration.  As a result such people experience vibration in various parts of their body similar to the way that we process sound.  This allows for, among other things, “listening” to music.

    Obviously the sense is not the same.  It is not hearing any more than my own ability to sense vibration is.  But what it is is many times stronger and more sophisticated than a hearing person’s vibration sense.

    Unless a cure for deafness came with an extra section of brain, getting a deaf person to hear like the rest of us would require mostly killing off that sense.  You’re not simply adding a new ability, you’re taking something away.

    As such, offering hearing to someone who is deaf is somewhat like a deaf person offering you the ability to feel as you have never felt before (which is to say like them), all you have to do is give up the ability to hear.  (Or almost all of your ability to hear.)  But hey, it’s not like hearing counts for anything.  Right?  Don’t you want to be fixed so you’ll be just like us?

    For whatever it’s worth (probably not much) I’m not wearing my glasses right now and haven’t been since before I started writing this post.  It’s not to make a point, it’s just something I do sometimes.  (Probably more often when it’s as intolerably hot as it is now.)  Normally I wouldn’t mention it, but this time it seemed relevant.

  • Anonymous

    We’re just talking at each other right now, but you’ve made some pretty cruel accusations. So here it goes again:

    You asked why it would be a problem if other people were forcibly altered without their consent, probably without their knowledge, to remove a set of traits that many people claim has enhanced their lives. There is a difference there.  I’m not talking about forced normalization, you are.  I’m talking about people having personal choice, you aren’t.

    And, as I’ve pointed out, we already do that and essentially nobody objects. We give children glasses; we give them contacts and speech therapy and braces and physical therapy all the time. We give children hormones when they aren’t going to grow to a normal height (now *there’s* “forced normalization”!). I could go on, but you get my point.

    Most modern “cures” — especially mental health treatments — are reversible. If teenagers don’t want to be non-autistic anymore, they can stop taking their pills. If people don’t want coccular implants, they can remove them. I don’t see anything wrong with that.

    What I do see as wrong is the repeated insistence that, because of the need for a “choice,” people should be denied access to medical treatment until they’re adults. As I’ve already pointed out, massive amounts of social skills are learned during childhood — many parts of childhood are virtually defined by the sorts of social experiences that one is expected to first encounter. Many autistic individuals miss out on those experiences, putting them at a disadvantage later in life. I’ve brought up the analogy to coccular implants before and I’ll bring it up again: if a child doesn’t obtain coccular implants early in life, it’s almost impossible for them to learn spoken language. Insisting that they need to have a personal choice in the matter — insisting that they should only get a treatment once they’re old enough to consent — essentially deprives them of many of the benefits of that treatment. If I were cured tomorrow, I would still lack the social network — both professional and personal — that most people in my position have. I would still have to learn many of the more advanced social skills that are needed to thrive — at an age when everyone expects people (particularly women) to already have them. In short, even if I were cured tomorrow, I would not be at the same position that neurotypical people are.

    Do some claim that autism has enhanced their lives? Yes, perhaps. But many little people will insist that their height isn’t a disability, and yet we allow parents to administer growth hormone treatments to their children, even though such treatments irreversibly alter an individual’s body.

    Continued in the next post: this is going to get ridiculously long, and I should get work done.

  • Anonymous

    “Do some claim that autism has enhanced their lives? Yes, perhaps.”

    Perhaps?

    Your analogy between autism spectrum disorders and need for vision correction is a fatally flawed one. I am on the spectrum. I am also nearsighted. Without my glasses, I can’t read anything more than a few inches from my nose, but I’m still recognizably myself. If I were off the spectrum–if I didn’t get anxious at the thought of offline social situations, if I could look people in the eyes and figure out when it’s my turn to talk–I’d be somebody different, and I don’t know who that’d be. Probably not somebody whose social hour is spent on Slacktivist, and I like to think that’d be a loss to the community as well as to myself.

    ETA: wtf Disqus

    ETA2: argh screw it

    ETA3: WHAT THE HELL IS WRONG WITH YOU DISQUS

  • Anonymous

    Without my glasses, I can’t read anything more than a few inches from my nose, but I’m still recognizably myself. If I were off the spectrum–if I didn’t get anxious at the thought of offline social situations, if I could look people in the eyes and figure out when it’s my turn to talk–I’d be somebody different, and I don’t know who that’d be. Probably not somebody whose social hour is spent on Slacktivist, and I like to think that’d be a loss to the community as well as to myself.

    Really?

    Without my glasses, I couldn’t drive. I couldn’t read journal articles, or run reactions, or do work on a computer using the programs that are currently available to my profession. Without my glasses, I’d have an entirely different life — one in which my life would be much more limited, and I’d probably be doing very different things with myself. Maybe I’d have gotten involved in podcasting or ham radio instead. It’s possible my life would remain the same, but I highly doubt it.

    But I’m not doing any of those things. Maybe the world is robbed of something by that, but I don’t have any obligation to the planet or to my community to run my life in a certain way.

  • Anonymous

    The only limitation I can think of that having no glasses would mean for me is that I’d need a ride to work. Everything else, as long as I can get my nose up to it, I can see it. So I’d look stupid at work but I could still work.

  • Anonymous

    Let’s try this again, and hope it doesn’t replace my whole comment with two instances of the word ‘object’ this time.

    “Do some claim that autism has enhanced their lives? Yes, perhaps.”

    Perhaps?

    Your analogy between autism spectrum disorders and need for vision correction is a fatally flawed one. I am on the spectrum. I am also nearsighted. Without my glasses, I can’t read anything more than a few inches from my nose, but I’m still recognizably myself. If I were off the spectrum–if I didn’t get anxious at the thought of offline social situations, if I could look people in the eyes and figure out when it’s my turn to talk–I’d be somebody different, and I don’t know who that’d be. Probably not somebody whose social hour is spent on Slacktivist, and I like to think that’d be a loss to the community as well as to myself.

  • Nix

    I cannot imagine any possible world in which people who are already autistic and whose brains have finished large-scale remodelling could be cured. I cannot imagine any possible world in which you could take pills and become normal, ten stop taking pills and suddenly be autistic again, any more than I can imagine a pill that would temporarily replace an amputated leg. What we do for that sort of thing — developmental disorders or similar — is prosthetics. But nobody with a prosthetic is ever quite normal, and unfortunately humans are so good at social interaction that the delays involved in querying a hypothetical ‘prosthetic social interaction assistant’ would be about as noticeable as the current problem. So that’s no help.

    A cure in embryo I can believe. But anything else is godtech (neural remodelling, uploading, neurally connected social assistant prostheses). Perhaps centuries from now we could cure autism in children and adults, but not before then.

    No matter how much people wish for it to be otherwise, this is how it is: how we are. Not all things are curable.

  • Anonymous

    I cannot imagine any possible world in which people who are already autistic and whose brains have finished large-scale remodelling could be cured. I cannot imagine any possible world in which you could take pills and become normal, ten stop taking pills and suddenly be autistic again, any more than I can imagine a pill that would temporarily replace an amputated leg.

    Except that, to some limited degree, we have drugs which do alleviate some symptoms of autism. I was probably a moderate Aspie prior to going on Risperdone (I’ve been open about this: I was never lonely before I went on the drug); I’m mild — and can pass fairly well for short to moderate periods of time — today.

    Autism is a spectrum. Extreme autism is probably pretty much incurable. But the geek-to-Aspie spectrum is fairly fluid; I think it would be easy enough to develop treatments which move you along (or off) the spectrum.

    No matter how much people wish for it to be otherwise, this is how it is: how we are. Not all things are curable.

    Maybe. (I’m very divided on the subject, as I’ve said.) But it’s one thing to accept that. It’s quite another to insist that that *must* be true: that any possible cure should be destroyed, or only applied under very limited circumstances.

  • Anonymous

    I just pointed out that not only did you lie [re: visual cures], but you lied in way that denied the existence of an entire class of people simply because they disagree with you, and your response was, “That’s great.”
    You know, if you’re not going to bother assuming sincerity, it’s not worth talking to you.

    What I did was misspeak: Nobody objects to giving children the cures for visual disabilities that have been in existence for generations. Nobody objects to giving children glasses or performing, for example, cataract surgery on infants who have inherited them. There may be some adults who don’t want a cure for their blindness, but that’s entirely beside the point, which is that we have already cured disabilities in children.
    That’s not great.  Treating real live people as an annoyance to be ignored and discounted simply because they don’t support your argument is not great.  It is the opposite of great.

    Oh, like you’re doing to me?

    [snip a lot of comparatively irrelevant stuff]

    Also, and this could simply be because of ignorance on the subject, I haven’t heard a lot of people with vision abnormalities that can be corrected by glasses talk about how their lives have benefited from those abnormalities.  To be clear, I’m saying that I have not heard about any great benifits to having uncorrected glasses correctable vision,  I’m not saying that there’s nothing interesting about having abnormal vision.  Certainly if I take off my glasses, close my left eye, and look at a leafy tree or bush with something bright behind it (sky, window, what have you) it looks like a painting by Van Gogh which is kind of neat, but it doesn’t come up that much and (since I can take off my glasses any time) isn’t something I have lost by wearing glasses.

    And that is *exactly* the point.

    “Different-abilities” — the belief that having a disability somehow grants you special abilities — is an entirely cultural phenomenon. It’s the same “separate but equal” belief that made people believe that terminal tuberculosis made artists more creative. It’s what makes people insist that being schizophrenic or bipolar or depressive makes you more creative. It’s what makes people insist that women are more spiritual or intuitive or sensitive towards other’s feelings — something that softens the blow when science and logic and mathematics are reserved for men. It’s what makes people assume that gay people are intrinsically fashionable.

    Sometimes those “different-abilities” are true. If you’re really lucky, getting your foot amputated will make sex more enjoyable (see _Phantoms of the Brain_ for details). Sometimes they’re complete and utter rubbish. Tuberculosis doesn’t improve your writing ability (though being in bed all the time might give you more time to work). Having cancer doesn’t grant you some deep well of inner strength. Mostly, though, they’re one part reality mixed with a lot of whistful thinking. Autism may make you more rigorously quantitative, but that’s not necessarily a good trade-off: I’ve met people who are smarter than me, better programmers, and better at math — who are still neurotypical. (It also doesn’t get you a job as an academic scientist anymore. Both Einstein and Dirac were almost certainly autistic — I’ll grant you that — but being a professor these days requires a lot more social skills than it once did. These days, being an autistic scientist just means you don’t have the connections necessary to find a new job once you get downsized.)

    The reason you don’t see people talking about the advantages of nearsightedness isn’t because they couldn’t be found to exist: even without the need to find any such link, there’s some tentative evidence that being nearsighted is linked to a higher IQ. It’s because no one needs to. There’s a treatment for it, and everyone who develops it is given the treatment almost immediately. It’s not part of your identity, even though, in another world, it could easily become one of your defining characteristics.

    Look at it this way: In a world where transgendered individuals could be identified and transitioned at birth (yes, I know that would be difficult — but *if*), being transgendered wouldn’t be part of someone’s identity at all. They’d just be another man or woman who happens to need to take a pill every day.

    Identities change. What you see as your essential traits may change with time — people switch religions and careers and lifestyles all the time. If you move, your perceived race may change as well. (My mother grew up in an Italian ghetto in New York City. Everyone today would just consider her white.) Personalities change, too. People grow out of ADHD naturally, or stop suffering from depression, or develop schizophrenia. All of those are “natural” traits, but that doesn’t make them permenant. Heck, people — children, even — move off and on the autism spectrum all the time.

    In a world where autism is a neural trait, there is no inherit reason not to permit a cure — for anyone. If autism is neutral, there’s no reason to favor either position. It shouldn’t have a protected status; it shouldn’t have to have one. If it does, there’s clearly something wrong.

    I’ve heard people say that disabilities should be seen as neutral traits, like eye color. That’s great — but when I got contacts, the first question I was asked was whether I wanted to change my eye color. Because even that can change.

    Broken up, because this is getting stupidly long.

  • Anonymous

    Final one:

    As such, offering hearing to someone who is deaf is somewhat like a deaf person offering you the ability to feel as you have never felt before (which is to say like them), all you have to do is give up the ability to hear.  (Or almost all of your ability to hear.)  But hey, it’s not like hearing counts for anything.  Right?  Don’t you want to be fixed so you’ll be just like us?

    That’s your analogy?

    Believe it or not, if hearing didn’t have clear benefits in our current world — and if sensing vibrations somehow were more beneficial — I don’t see any reason why not to go for it.

    I don’t say that autistic children should be given cures because I think autism is somehow intrinsically wrong. I say it because being neurotypical during childhood offers clear benefits that autism does not (social skill acquisition is a gradual process and society *strongly* looks down upon those who do not have age-level abilities, *especially* for women) — and because curing individuals as adults places them at an intrinsic disadvantage relative to purely neurotypical individuals. (Once again I return to the coccular implant analogy which you have completely ignored: children must be given coccular implants as infants or toddlers in order to learn to understand spoken language, yet this means that they will probably never identify as Deaf. Should we prohibit coccular implants in children because they haven’t had time to develop their personality as Deaf individuals? Or should we allow parents to do the research and decide what’s best for their children?)

  • chris the cynic

    You know, if you’re not going to bother reading my entire post, I don’t know why I’m going to bother replying.

    I suppose I should start with this:

    If I don’t get a say in it, neither do you.

    That’s right, I don’t.  That is why I never said that I did.  I said that I would have cured myself of (what I consider) a disorder at onset.

    You asked why it would be a problem if other people were forcibly altered without their consent, probably without their knowledge, to remove a set of traits that many people claim has enhanced their lives.

    There is a difference there.  I’m not talking about forced normalization, you are.  I’m talking about people having personal choice, you aren’t.

    [There are absolutely some blind people who aren’t interested in getting cured.]

    That’s great.
    I just pointed out that not only did you lie, but you lied in way that denied the existence of an entire class of people simply because they disagree with you, and your response was, “That’s great.”

    That’s not great.  Treating real live people as an annoyance to be ignored and discounted simply because they don’t support your argument is not great.  It is the opposite of great.

    I’ll give you the benefit of the doubt and assume you meant, “That’s great for them.”  But that doesn’t change the fact that first you lied about them, tried to pretend that they didn’t exist, and then when you were called on it your response seems to have been that they don’t count.

    Should we insist that children shouldn’t be given glasses until they come of age because they might want to be the way they are?

    Obviously glasses can be a touchy subject.  Sometimes having glasses causes a child to be ostracized and thus they don’t get properly socialized during their crucial formative years, and that lack of social skills can in turn lead to long lasting problems.  I’d like to think that we’re moving passed that though.  So I’m going to address this question as if we live in a magical world where everyone’s experience with glasses is as rosy and trouble free as my own.

    I can take my glasses off.  Children can take their glasses off.  Giving someone glasses doesn’t make them stop being the way that they are.  Glasses are not surgically attached to children and as such a child with glasses will be fully capable of going back to how they would be without glasses any time anywhere.  In all likelihood they’ll see what it’s like to be without glasses (for however short a time) multiple times a day.

    Giving them glasses isn’t robbing them of a choice.  It is putting a choice in their hands.  They have the ability to see things both ways, and make an informed decision.  If you give small children glasses then by the time they are adults they will have years of experience seeing how things look with glasses, and seeing how they look without them.  Based on that information they can make their own choices. 

    Also, they can make a different choice every day if they so desire.  

    It’s very different.

    Also, and this could simply be because of ignorance on the subject, I haven’t heard a lot of people with vision abnormalities that can be corrected by glasses talk about how their lives have benefited from those abnormalities.  To be clear, I’m saying that I have not heard about any great benifits to having uncorrected glasses correctable vision,  I’m not saying that there’s nothing interesting about having abnormal vision.  Certainly if I take off my glasses, close my left eye, and look at a leafy tree or bush with something bright behind it (sky, window, what have you) it looks like a painting by Van Gogh which is kind of neat, but it doesn’t come up that much and (since I can take off my glasses any time) isn’t something I have lost by wearing glasses.

    By comparing it you curing autism you make giving someone glasses sound like “curing” something like synesthesia, but the truth is that it doesn’t work that way.  The ability to take off your glasses means that you never lose the ability to go back to the way you perceived things before at a moment’s notice, and the fact that glasses aren’t warn 24 hours a day 365.25 days a year means that people with glasses are never going to go long without knowing what it’s like not to have them.

    If I were to say that changing someone’s body is different from changing their mind and that the first is ok, then someone (possibly ako) would rightfully point out that I was being a complete and total asshole.

    That said, I’m having trouble taking seriously a comparison between being on the autism spectrum and having rotting teeth.  Maybe I just haven’t met the right people yet.  If I posit that for some people having rotting teeth is as much a contributor to their identity as being on the spectrum is to yours, then I could see how there might be a problem.

    That said I do see some differences.  The first is that having rotting teeth isn’t how one is, but instead something that one might become.  Parents preventing children from allowing their teeth to rot are not changing their children.  They are preventing their children from changing.  It would be more akin to preventing their children from taking a drug that causes autism than curing their children of autism.  That’s an interesting moral situation to ponder, but it’s clearly not the same.

    It is stopping the children from changing themselves until they are old enough to understand the choice and give informed consent.  Which is what I think the right thing to do in the case of children with autism would be if a cure were available.

    Something that might be getting left out when talking about glasses and rotting teeth is that even in the absence of what we would normally call side effects, things will get lost in more extreme forms of normalization.  Deaf people, for example, can feel in a way that most of us can’t.  It’s an interesting topic to read about, but for anyone who doesn’t want to look it up, here is the extremely short version:

    If the reason someone cannot hear is that their ears do not work that means that there’s still a whole fully functional section of that person’s brain that would normally be devoted to hearing.  It does not slack off.  It instead processes another form of information usually (always?) vibration.  As a result such people experience vibration in various parts of their body similar to the way that we process sound.  This allows for, among other things, “listening” to music.

    Obviously the sense is not the same.  It is not hearing any more than my own ability to sense vibration is.  But what it is is many times stronger and more sophisticated than a hearing person’s vibration sense.

    Unless a cure for deafness came with an extra section of brain, getting a deaf person to hear like the rest of us would require mostly killing off that sense.  You’re not simply adding a new ability, you’re taking something away.

    As such, offering hearing to someone who is deaf is somewhat like a deaf person offering you the ability to feel as you have never felt before (which is to say like them), all you have to do is give up the ability to hear.  (Or almost all of your ability to hear.)  But hey, it’s not like hearing counts for anything.  Right?  Don’t you want to be fixed so you’ll be just like us?

    For whatever it’s worth (probably not much) I’m not wearing my glasses right now and haven’t been since before I started writing this post.  It’s not to make a point, it’s just something I do sometimes.  (Probably more often when it’s as intolerably hot as it is now.)  Normally I wouldn’t mention it, but this time it seemed relevant.

  • Anonymous

    I’m autistic, and I’m rather not sure I’d want to be “cured.” I have an IQ in the high 160s on most tests, and I can’t help but think the two facts are related. To be a normal person would mean… well being normal, and I’m not sure if having a difficult life with the opportunity for excellence is worse than having an average life with only mediocrity.

    But I can’t say I haven’t suffered. I’m 27 and I’ve never been in a relationship, I have no close friends or family, and have had lots of problems in school and work. One of my main problems is that I can’t find work I am suited for. We have a service economy, and that’s horrific for people who are autistic. I work best when I am just left alone or working with people that I know. Dealing with customers is something that I can’t do very well.

  • Pthalo

    My personal opinion is that not vaccinating your child because you believe it might cause autism is saying “I would rather my child die of measels, mumps, pertussis, polio, etc. than have a chance of becoming disabled.” and that is ableism.

    My mother is an anti-vaxxer, so I wasn’t vaccinated as a child, even though this was in the 80s before not vaccinating you child became as popular as it is now. in her case, a lot of her problems with standard western medicine stem from a bad experience with (sexist) medical doctors not taking her pain seriously and then finding relief through chiropractic. a lot of chiropractors (at least, the ones she hangs out with) are into other forms of alternative medicine as well, and my mother, with her biases and her lack of information on critical thinking, and the testimonials she’s heard and listens to, is particularly susceptible to this sort of thing. If a book or a website mentions a medical conspiracy and uses the right alternative medicine buzzwords, along with a few testimonials, that’s all it takes to convince her. About a decade ago she rang me, a person who had been hospitalised a few years prior for anorexia, all excited about a website that explained how humans could learn photosynthesis by staring at the sun and then they wouldnt have to eat anymore.
    When I had bronchitis as a kid, I was taken to homeopaths and naturopaths and faith healers and shamen and gurus. Finally, after 11 months of being very sick, my mother relented and let me have antibiotics.tw abuseI had a lot of behavioural problems growing up. Autism was suspected at one point, but ruled out because I didn’t meet the diagnostic criteria at all. I was eventually diagnosed with oppositional defiant disorder (which really just means “kid is in an abusive environment and has no coping skills” but by saying the kid has a disorder you can feel sorry for the parents who have to cope with such a terrible child, no wonder they abuse it. I think it should be stricken from the DSM because it’s victim blaming). Anyway, my parents took me through all sorts of pseudoscientific procedures, many of which I now believe to have been harmful and not just placebos, to get to bottom of why i was such a bad kid. I’m now convinced that this was, in itself, abusive. 

  • Anonymous

    “My personal opinion is that not vaccinating your child because you believe it might cause autism is saying “I would rather my child die of measels, mumps, pertussis, polio, etc. than have a chance of becoming disabled.” and that is ableism.”

    This, in spades. Saying you’d rather have your child die of preventable disease than *maybe* end up disabled is, in essence, saying that there are conditions under which you prefer a dead child to a living one. Kids die all the time, but that doesn’t make it a good thing, and wanting any child, especially your own, to die is deeply disturbing.

    Regardless of how you feel about a “cure” for a disability (I personally believe my severe ADD “Ain’t no Damn Disease,” but am relieved beyond measure that my BCP’s alleviate my depression as a happy side-effect), you should NEVER expose your child to danger of death over the possibility that they MIGHT somehow someday end up disabled. Do what you can to take care of the child you’ve got.

  • Pthalo

    um, i have no idea why “antibiotics.tw” is displaying as a link. when i typed it, antibiotics was the last word in a paragraph, and “tw abuse” was on its own line” and then the rest was a different paragraph.

  • Anonymous

    At one time, vaccines **did** contain mercury.  Mercury **would** have had an impact on the brain that **might** explain autism.  Now we have the fabulously trustworthy word of the drug companies that the vaccines are safe.  I might be a bit dubious myself.

    That’s misleading, at best.

    Vaccines contained ethyl-Mercury. The compound you want to watch out for is methyl-Mercury. Your body can dispose of ethyl-Mercury without much trouble. Further, vaccines contained an extremely small amount of it and were thoroughly tested before being used.

    It’s rather akin to refusing to eat anything with vanilla in it because it’s stored in an (ethyl) alcohol solution, and you know that (methyl) alcohol can, in sufficient doses, lead to blindness or death.

    I mean, there’s a link there, of a sort, but it’s so tenuous that it probably envies spider silk for its size.

    It also helps that the removal of thermisol from vaccines has lead to zero decreases in Autism-Spectrum disorders. Now the antiVax crowd are claiming that it’s some other “toxin” or other in them. You could swap out every single ingredient in a vaccine and they wouldn’t be happy because, for the leaders, it’s not about stopping Autism, it’s about opposing vaccines. I don’t know why that is*, but they’ve made it perfectly clear that any immunization should be seen as evil, no matter what it contains or does.

    *Well, alright, for quite a few of them it’s the money. They’ll “detox” your autistic child for a few tens of thousands of dollars to get rid of all the stuff those nasty needles put in them. But there are also fierce anti-immunizationers that don’t have that reason.

  • Anonymous

    In addition to all that, autism does not resemble actual mercury poisoning.

  • Leila

    I understand where Loki is coming from with the exception of that blazing fast IQ :) I also loved their quote about living a life with steaks of excellence versus a life filled with mediocrity. I feel the same way most days:)  I have Asperger’s and mild ADD and I pretty much have the same difficulties as many others posting here who are on the spectrum of autistic disorders. My mother was never an antivaxxer but she does ironically strongly believe that my aspergers was likely caused by my being given the MMR vaccine. When I weighed only twelve pounds at aged one, I was given it with terrible results.  I also was three months premature, hence the tiny size. She leans more towards the vaccine because I had terrible grand mal seizures as a reaction right after being given the vaccine which continued for some years later during my childhood. She said I was previously thriving despite my tiny size but then after the reaction I started having autistic symptoms throughtout the years I experienced the seizures.  She loves me to death but still pressures me to get out and meet people and other ‘social’ things because she just doesn’t understand a lot about me. It sometimes seems that this is the biggest issue with many parents and loved ones: lack of understanding and a desire to ‘help’ their loved ones ‘fit’ in.
     
    I was only officially diagnosed as an aspie at aged twenty in college and have never been able to find suitable employment either despite my english degree and creative writing skills. I winged fast food for over seven years to make ends meet before being fired the first of May for ‘not being able to do the job’. I had to fight tooth and nail to get unemployment despite being a loyal employee and once that’s run through it’s a rock, hard place, and me scenario unless the plan of absolute last resort goes through.  I’m kind of unsure though as far as being ‘cured’. I don’t like the idea that I likely do have brain damage due to my early birth and the health issues I mentioned above, but it made me who I am today. I am concerned for my chances of having a family though, which I long for very much. Would I be able to find a loving man who’d understand me and be sensitive to my issues? Would my child be worse off than me if the aspergers is inherited? I just can’t answer any of those questions until I’m hopefully faced with those situations.
     
    As far as finances is concerned(and please don’t think I’m being rude or forward in any way),have any of the posters who have autism considered applying for disability? As I mentioned above, it’s a plan of last resort but if our type of autism is so limiting that we can’t be gainfully employed it’s at least worth looking into. I was finally forced to recently face the music after losing the only work I could find and try to sign up for disability. If I get it, I don’t plan on taking the money and wasting my life sitting on my butt, but rather concentrating on getting published so I earn enough to get off of disability and not ‘burden’ society any longer than I have to.   Like everyone here, I WANT to work at gainful employment but just can’t find suitable work on my own. I’ve previously worked with vocational rehabilitation and other such goverment agencies but have never been matched with a suitable job that I can excel or at least be very decent at. It would have been fast food or other menial ‘service’ type jobs I’m lousy at.  If I have to, I’ll work with Voc Rehab again, but like Loki and many others, cannot do very well at all in a ‘service’ or ‘people friendly’ workplace and it’s sad indeed that those are the only types of jobs out there right now.

  • Nix

    Leila: you *can* sort of blame your parents :) because autism is one of the most strongly genetically-connected conditions known, with genetic influence above 90% (though, typically, only about 7% of this is connected to known genes: most will be a mass of tiny changes in thousands of genes, and/or gene-regulatory changes). So you can legitimately say that if your parents had never met each other, you would probably not have had an autistic spectrum condition. This approach to a cure has certain downsides though (like not existing any more).

    The prematurity may have served as an environmental trigger as well — probably one of many: one fault of the antivaxxers is pointing at one single thing and saying “that must be the problem, that and that alone!”. But it is notable how many people with Asperger’s in particular were born prematurely.

    I was two and a half months premature and a twin, so severely undersized at birth. I suspect we have a lot of the same related problems (frequent colds, perhaps visual problems, thankfully I avoided the brain haemorrhages and convulsions also common with the severely premature).

  • http://www.facebook.com/j.alex.harman John Alexander Harman

    Interesting that this poor deluded fellow is a fan of The Stand; Spider Robinson once summarized that book as Stephen King’s “brilliantly entertaining parable in praise of ignorance, superstition, reliance on dreams, and the sociological insights of feeble-minded old Ned Ludd.”

  • http://www.facebook.com/j.alex.harman John Alexander Harman

    Interesting that this poor deluded fellow is a fan of The Stand; Spider Robinson once summarized that book as Stephen King’s “brilliantly entertaining parable in praise of ignorance, superstition, reliance on dreams, and the sociological insights of feeble-minded old Ned Ludd.”

  • http://pulse.yahoo.com/_NYIMSCWWLA5XTAYXL3FXNCJZ7I Kiba

    Then you have people like my brother who argue that the HPV vaccine causes girls to be promiscuous because, well, I’m not exactly sure. He just blindly states that a girl who gets the HPV vaccine will become promiscuous. Pointing out just how wrong he is gets me called a hippie liberal. 

  • ako

    Chicken pox is certainly still in the public consciousness (I was
    just a couple of years too old to get the vaccine before I got the
    disease), but it is nowhere near as bad of an illness as the other
    diseases.  If all someone has seen is chicken pox, they get the
    dangerous false impression that vaccines are to prevent a couple of days
    at home; rather than the truth that Hilleman’s work has saved hundreds
    of millions of lives.

    Yeah, the only vaccine-preventable diseases that I’ve actually seen people having were chicken pox and the flu (and presumably, I’ve seen people with HPV, but I’ve never been in a position to notice that people had it).  The flu can cause serious harm, but the temporary and minor cases are far more common, and form the general public impression of something where you lie around for a few days and wait for it to go away (plus, there’s the thing where there’s a new vaccine every year, and a number of people get vaccinated and still catch less-prevalent strains, so for a lot of people it seems to be high in effort and low in reward).  And chicken pox presents a confusing picture – in most cases it’s a minor illness, immunity is lifelong, and the vaccine doesn’t confer lifelong immunity, but instead leaves a number of people in the “Oh, you were vaccinated?  It’s probably worn off by now, so you’re at risk for the more serious form of the virus adults get.”  So for people who don’t know the whole situation, the impression likely to be formed is “Vaccines mostly prevent minor illnesses and you may be better off just getting sick.”

  • solandis

    A minor note: the immunity derived from contracting chicken pox is not always lifelong – my wife caught it again when our children did, and was completely miserable – and both naturally-acquired immunity and vaccine-acquired can leave one vulnerable to shingles later on (assuming that’s what you were referring to). Oddly, assuming you (as an adult) have some form of immunity, you can actually reduce your chances of getting shingles if you’re exposed to children with chicken pox, which is why, if I recall correctly, in some parts of Europe, children aren’t generally vaccinated for chicken pox.

  • http://www.kitwhitfield.com Kit Whitfield

    In my experience this is largely (if not 
    entirely) incorrect. Relying on external emotional signals is a bad 
    idea: that’s one of the areas that is impaired in severe autism.

    With facial expressions, I’m sure that’s true. On the other hand, a good friend of mine has an autistic brother; he’s technically high-functioning but his ‘external emotional signals’ include ranting about how angry he is with everyone who’s offended him in the last twenty years every time he feels stressed, screaming in people’s faces, and threatening violence to himself and others. I think perhaps ‘external emotional signals’ is too broad a term, because some signals are accurate: ‘facial expressions and body posture’, perhaps? 

    He’s someone who would take a cure. I don’t think his unhappiness comes from bad parenting; his parents worked very hard to give him a decent quality of life. I don’t think letting him focus on his interests would have been the cure-all either – he gets to do that, but part of his problem is that he feels very easily threatened and leaps to feeling wronged and angry, and then immediately becomes aggressive, which just makes everything worse. The trouble is, he often does it in response to behaviour that doesn’t actually threaten him; there are certain subjects, for instance, that you just can’t mention at all in front of him if you don’t want him to freak out. He’s anxious pretty much every waking minute, I think, no matter what his circumstances. His family really do their best for him, and his misery is not their fault. It’s just a symptom of his austism.

    On the other hand, I know another family with an autistic son who also work hard to make things better for him, and when he isn’t being bullied and is being accepted for who he is, he’s perfectly happy, and in fact he’s a darling boy; his siblings sometimes struggle with the differences, but he’s definitely loved for who he is. I don’t think his family are any better parents – I mean, they’re excellent parents, but the other family are just as good. His autism just works differently. I don’t know if he’d take a cure, but he wouldn’t need one to be happy: he just needs an environment that accommodates him.

    Which is an anecdotal way of saying ‘It’s going to vary a lot from individual to individual.’ I think it may be that this man’s daughter genuinely is suffering through no fault of his or hers; without knowing the family, it’s pretty much impossible to call. 

  • Nix

    Yes, anger management and stress management is critical: if you can’t manage your stress and anger responses, you *will* have an unhappy life. The way to do that is generally to adjust your environment so that it no longer contains so many stressors. Of course this can be hard to impossible, but it is not a sentence of unhappiness — and as people will naturally attempt to minimize stressors, a lot of people will eventually end up happy enough.

    The anxiety is definitely an autistic symptom, but it equally definitely can be managed. I at least needed to contort my whole life to do it, but that’s a worthwhile cost. Autistic rages still happen — the volcano is still there — but it erupts only every five years or so, invariably in response to my own stupidity or clumsiness.

    But a lot of the coping depends on learnt stuff — e.g. learning to make rapid excuses, leave whereever you are, and go somewhere quiet and alone when you can sense a burst of rage or extreme stress coming on. If you never learnt to do that, you could well explode in front of other people, which would be unpleasant for both you and them. (I did that a lot in my teenage years. One thing you didn’t mention is the approximate age of this autistic brother. Autism is a condition of developmental delay, so these things always get better with time. I can be mistaken for normal for hours at a time now, after 35 years of learning.)

    (I don’t think anyone ever called me a ‘darling boy’ though.)

  • http://twitter.com/FearlessSon FearlessSon

    I will chime in as another regular poster on the Autistic Spectrum, aspie. 

    When they say that an autistic child is suffering, it feels like they are not really addressing the question of why the autistic child is suffering.  The fundamental issue with autism is that of interface.  The way an autistic person’s brain is wired up is different than that in someone with a more typical brain, and this often causes an autistic person to reaction to various stimulation in ways that might be unexpected.  Something that a typical person might take in stride, like a particular background sound, could cause an autistic person great distress.  Similarly, something that would cause a typical person to recoil in pain and horror, and autistic person might be unfazed by.  The brain simply has a different set of tolerances, which can make interaction with a world built on the assumption of a certain other set of tolerances difficult.

    Hence, why I argue that the best way to treat autism is to help the autistic individual develop an “interface” that allows them to deal with the rest of the world.  As an analogy, glasses for a nearsighted person are an interface that allows them to see the world as someone who is not would see it.  They do not change the eyes of the nearsighted person, they just filter what information reaches those eyes in such a way that the eyes can interprete them clearly.  For an autistic child, this would be things like behavioral classes, experimentation with various communication methods, and yes, medications to help soften the threshold for unavoidable sensory input, if such is necessary. 

    It is possible that a child might be too far removed from “normal” to ever integrate successfully, or at least without further suffering on their part.  In such cases, the best we can do for them is institutionalize them in a place where they can be comfortable.  It may sound callus to recommend such a thing, but there are extreme cases in which it really is the most compassionate option. 

    One thing that needs to be addressed is that the suffering in many of these cases are the suffering of the parents themselves.  Maybe the child suffers from exposure to some kind of normal input, like if the furniture was rearranged in a room, setting off a tantrum.  The child suffers in such a case, so the parents have to take pains to avoid situations which would cause their child to suffer.  But this in turn can cause the parents to suffer.  Raising a child, any child, takes a great deal of energy, attention, and sacrifice.  Raising a child with such drastic special needs requires even more so. 

    The tragedy in a lot of those cases is that the parents just do not have that kind of energy to give.  They might have had enough for the child if it were not for those special needs, but those needs push the parent’s tolerance past the burnout threshold at an early age.  This is not to imply that the parents do not still love the child, and indeed, their increasing desperation suggests that they do, but having enough love, and having enough time, money, and energy are different things.  The former can be boundless, the later is finite.  So you get to the point that the parents are the ones suffering the most, under the burden of their own love, and they grow desperate for a cure because they fear that they will not be able to endure for the love of their child, and the thought terrifies them.

    Speaking of the burden of parents of autistic children, I wanted to point out the book “A Will of His Own: Reflections on Parenting a Child With Autism“, by Kelly Harland.  It focuses less on her son, and more how her son’s austim has shaped her own life and added difficulties for her as a parent, and how she dealt with those difficulties.  Some here might find it useful.  However, this is not without some sense of shameless self-promotion.  She wrote a chapter in that book on an evening when I spoke to her parents-of-autistic-children support group.  I am glad that I was able to help calm some of her fears about what her son might grow up to be like in the future.

  • Anonymous

    For the same reason it’s a problem saying that introverted people should be cured.

    From my point of view, it’s all you extroverts out there who are the weird ones.  That said, it’s largely an extrovert’s world, and although I don’t desire to be one full-time, there are occasions (wedding receptions, etc.) when I’d like to be able to fake it for a while.

  • Tonio

    I sometimes want that same ability to fake extroversion. I’m not sure if I have Asperger’s or if my introversion and social difficulties are the product of childhood trauma. I often misread body language and facial expressions, but that may simply be the result of avoiding eye contact. I am often mystified by others’ feelings and mindset, but again I might not interact enough with other people to really understand how another person might think and feel.

    I was called names for so many years during school, I still feel uneasy in social gatherings when I don’t know people well – I keep waiting for the taunts to start. And I’m particularly uneasy around men who I stereotype as being “aggressive” – manual workers, police officers, firefighters, military service members, bikers, football players, weightlifters…really any man who doesn’t act like Fred Rogers or Ralph Covert. Although I’m straight, when I’m around such men I fear that they’ll think I’m gay, because that was my experience in high school. Around such men, I clam up about my interests, for fear that they’ll find out that I don’t like hunting or sports or beer. I’m probably being unfair to those men.

  • We Must Dissent

    That said, it’s largely an extrovert’s world, and although I don’t
    desire to be one full-time, there are occasions (wedding receptions,
    etc.) when I’d like to be able to fake it for a while.

    Just to be clear, and I am not sure Vermic and Tonio are implying this, introversion is not the same as shyness and a is separate item. As a huge introvert (I usually score at the extreme introvert end of introversion-extroversion scales on personality tests, and it matches my life experience), I can be charming, mingle, make speeches, talk to strangers, all that. It’s just that rather than finding it refreshing or energizing, I find it freaking exhausting and would rather do other things.

    That said, American culture, at least, is strongly biased towards extroversion. I’ve noticed it in education in particular. The latest, most popular strategies are all about creating a “stimulating” environment where those who speak quickly are rewarded. Introverted students who would rather consider before answering are passed over.

  • Tonio

    I am not sure Vermic and Tonio are implying this, introversion is not the same as shyness and a is separate item.

    I’m not sure of the exact distiction, and I’m not sure of the definition for my own problem. Fear of people? Social anxiety? In conversations with strangers or acquaintances, out of nervousness I tend to ramble, talking at them rather than to them or with them, and then afterward I mentally scold myself for doing that. The nervousness seems to interfere with my presence of mind in such situations. My wife does the same thing my mother used to do, insisting that I get some friends. But for some reason, I cannot even conceive of inviting an acquaintance or co-worker with mutual interests to socialize.

  • http://willbikeforchange.wordpress.com/ storiteller

    I totally ramble as well, and it’s taken my entire life of 28 years to learn how not to.  At parties, I still make eye contact with my husband for a sign to see if I’m dominating the conversation too much or not.

  • Tonio

    I am not sure Vermic and Tonio are implying this, introversion is not the same as shyness and a is separate item.

    I’m not sure of the exact distiction, and I’m not sure of the definition for my own problem. Fear of people? Social anxiety? In conversations with strangers or acquaintances, out of nervousness I tend to ramble, talking at them rather than to them or with them, and then afterward I mentally scold myself for doing that. The nervousness seems to interfere with my presence of mind in such situations. My wife does the same thing my mother used to do, insisting that I get some friends. But for some reason, I cannot even conceive of inviting an acquaintance or co-worker with mutual interests to socialize.

  • Anonymous

    Just to be clear, and I am not sure Vermic and Tonio are implying this, introversion is not the same as shyness and a is separate item.

    That’s a good and significant point.  In my case, I happen to have some degree of shyness in addition to being introverted, so there’s some overlap and that’s fun.  But even with friends or family, small groups of people I know well, I’m usually among the first to wrap it up for the evening and head home.  And it’s not that I don’t enjoy being with them, it’s that there comes a point where I am mentally “done” and my brain starts metaphorically tugging at my sleeve, because it needs some alone time so it can process or whatever it does.  Extroverts, I suppose, take longer to reach this point; or maybe they have no idea at all what I’m talking about.

    Some years back I was part of a team-building exercise where they broke us into groups based on our Myers-Briggs introvert/extrovert score, then each group was asked to plan a party.  Not surprisingly, the high-I group I was in came back with features like: low-key, unstructured, mostly close friends.  The high-E group said, “We decided we needed to schedule a preliminary party around the event for planning the main party.”  Both extreme groups regarded the other with incomprehension, like they were observing the behavior of some alien species; but both groups were also equally happy with what they had planned for themselves.

  • http://www.facebook.com/people/Tom-Vinson/100002426710253 Tom Vinson

    I had to look up Annunaki.  The second hit, after Wikipedia, was this page:
    http://www.hiddencodes.com/annunaki.htm
    “Also known as Jedi, or Nephilim”
    I wonder if George Lucas and Alec Guinness knew that?

  • http://www.facebook.com/people/Tom-Vinson/100002426710253 Tom Vinson

    I had to look up Annunaki.  The second hit, after Wikipedia, was this page:
    http://www.hiddencodes.com/annunaki.htm
    “Also known as Jedi, or Nephilim”
    I wonder if George Lucas and Alec Guinness knew that?

  • http://carpescripturum.wordpress.com/ MrPopularSentiment

    Vaccines are an easy target. Anyone who has had to hold their baby down during an injection, heard the screams of pain and terror, and then dealt with a cranky, sore, and possibly feverish baby for up to 2-3 days afterwards is already going to wonder if it was all worth it – even if they know better.

    In a purely animal instinct way, vaccines *feel* wrong, they *feel* like harm.So when someone comes along and says “all that pain? All that stress? Not only is it unnecessary, it might even be harmful!!” it’s far too easy to believe them.

    The leaders of the anti-vax movement know better. They’ve had too much interaction with the science not to. It’s clear to me that this goes beyond self-delusion and that many of them are simply seeing this as a business – whether for money or for attention. 

    But for the hordes of nameless parents who are convinced by this? I can feel only compassion. Most of them probably aren’t even anti-science. If anything, they may be pro-science, but can’t access good information – either because they don’t know how or because so much of it is hidden behind paywalls. So when the news tells them that “scientists” are questioning whether vaccines might be harming kids, they can’t defend their brains.

  • Tonio

    Anyone who has had to hold their baby down during an injection, heard
    the screams of pain and terror, and then dealt with a cranky, sore, and
    possibly feverish baby for up to 2-3 days afterwards is already going to
    wonder if it was all worth it – even if they know better.

    I had to do that with one of my children at that age, but it was for an emergency antibiotic IV after our pediatrician refused to prescribe the oral version. I simply tuned her out and thought about how she had been feverish and listless for the past three days without any medicine. Within 90 minutes she was already feeling better. Having been there, I can’t deny that I’m tempted to dismiss those parents as “wusses” (a term that I just realized may have sexist origins). Or to be more charitable, I wonder if they’re not trying hard enough to make themselves resistant to demagoguery. Is that too much like blaming the victim? None of that changes my anger at the leaders of the anti-vax movement for manipulating the parents that way.

  • Nicolae Carpathia

    This may be speculation, but I think one of the reasons people seem to be talking past each other re: a “cure” may be this: Not everyone on the spectrum has the same collection of symptoms. In fact, not even people with the same spectrum disorder display the same symptoms.

    Once again, OOC:

    One of the more common ASD traits (whether low-functioning or high-functioning) is an aversion to physical contact with other humans. Many high-profile cases have this, and many lower-profile cases do as well, and it’s commonly believed that this is one of the “fixed” traits.

    I don’t have this. I can get (and give) hugs, and I don’t mind them.

    I have many of the other common symptoms: OCD, mood swings, social anxiety, sensitivity to noise, aversion to rough surfaces, metabolic issues, and the aforementioned lack of ability to read and project emotional signals (though my experience as a stage actor has helped me learn to fake those, to the point where I can sort of muddle my way through a conversation).

    But IME, pretty much everyone on the spectrum (and even most individual Aspies) is “missing” at least one or two symptoms… and sadly, in the real world, some of these symptoms are far more stressful and limiting than others.

    And this can lead people on the spectrum to have differing opinions about the potential of a cure, because many of us tend to assume that other people on the spectrum have the same “set” of problems in day-to-day life, so some believe it’s “not that bad” while others believe that it’s a debilitating condition that should be cured by default.

    That said, I think “wears glasses” is a terrible analogy no matter what your symptom set is. For reasons that chris the cynic articulated quite well above.

  • Nicolae Carpathia

    This may be speculation, but I think one of the reasons people seem to be talking past each other re: a “cure” may be this: Not everyone on the spectrum has the same collection of symptoms. In fact, not even people with the same spectrum disorder display the same symptoms.

    Once again, OOC:

    One of the more common ASD traits (whether low-functioning or high-functioning) is an aversion to physical contact with other humans. Many high-profile cases have this, and many lower-profile cases do as well, and it’s commonly believed that this is one of the “fixed” traits.

    I don’t have this. I can get (and give) hugs, and I don’t mind them.

    I have many of the other common symptoms: OCD, mood swings, social anxiety, sensitivity to noise, aversion to rough surfaces, metabolic issues, and the aforementioned lack of ability to read and project emotional signals (though my experience as a stage actor has helped me learn to fake those, to the point where I can sort of muddle my way through a conversation).

    But IME, pretty much everyone on the spectrum (and even most individual Aspies) is “missing” at least one or two symptoms… and sadly, in the real world, some of these symptoms are far more stressful and limiting than others.

    And this can lead people on the spectrum to have differing opinions about the potential of a cure, because many of us tend to assume that other people on the spectrum have the same “set” of problems in day-to-day life, so some believe it’s “not that bad” while others believe that it’s a debilitating condition that should be cured by default.

    That said, I think “wears glasses” is a terrible analogy no matter what your symptom set is. For reasons that chris the cynic articulated quite well above.

  • chris the cynic

    Not everyone on the spectrum has the same collection of symptoms. In fact, not even people with the same spectrum disorder display the same symptoms.

    That’s part of the reason that I think people should be able to chose for themselves.  It’s not all of the reason, but it’s definitely a part of it.

  • http://twitter.com/FearlessSon FearlessSon

    Before people can choose for themselves, a line of communication with them has to be opened up.  Otherwise, they cannot express their own choice.  With some particularly severe autistic cases, this can be very difficult.  The person might not even be able to talk normally, even if not mute, lacking the development of a “vocal interface” you might say.  That is not to say that ways to communicate with them and assess their desires are impossible, just that a lot of experimentation and training needs to happen first. 

    Unfortunately, some parents do not seem to realize that, and just despair for their child from the begining. 

  • Tonio

    Unfortunately, some parents do not seem to realize that, and just despair for their child from the beginning.

    When some of them talk about the onset of autism, they sound like grieving parents, like they lost their children. Hearing that, I can easily understand how adults on the autism spectrum would feel invalidated and devalued.

  • http://twitter.com/FearlessSon FearlessSon

    When some of them talk about the onset of autism, they sound like grieving parents, like they lost their children. Hearing that, I can easily understand how adults on the autism spectrum would feel invalidated and devalued.

    I suspect that it is because they make the decision to become parents with a particular pre-conception of what their children will be like, and what they can expect ten, twenty, or thirty years down the line about what shape their family will take.  This is, in my opinion, never a good idea, and autism is one of those things that just throws a big spanner into the works.  All their hopes and dreams for what the child might one day turn out to be just got dashed with the diagnosis. 

    A parent must adjust their concept of their child’s future at that point, and accept that they will be on a different path.  But some parents just have trouble letting go of those dreams.  Their attachment makes things more difficult, both for them and for their child.  In the case of those who follow this into the anti-vaccination movement, it makes things more difficult for the rest of society too. 

  • Nix

    Quite. They didn’t want children as people in themselves: they wanted a child *and they wanted that child to be a particular way*, i.e. a copy of themselves. This is pretty normal. Acting as if a child has died when all that died is a hopeless dream, well, that’s not so normal.

  • Ksiusia

    A couple of years ago I went to a lecture on bogus autism “treatments.” The speaker was talking about thinking critically when one of the mothers in the audience jumped up and said, “We CAN’T think.” This is something that we need to consider when dealing with antivaxxers as a group–many of them have inadequate support networks and are literally driven to distraction by the stress of taking care of someone who has frequent meltdowns and by the enormous pressure to produce children who conform to the standard model.

  • http://willbikeforchange.wordpress.com/ storiteller

    I think the variety of aspects involved in autism is what makes the “deaf” analogy break down. Deafness influences one major, specific sense, whereas autism affects not only what sensory input someone has, but also how they process and react to it. And each of these aspects can have very different advantages and disadvantages depending on the person. As others have said, that’s why the idea of “curing autism” makes little sense.

    Instead of trying to find an overall cure or prevention, it seems like it would make a lot more sense to ask autistic people what aspects they would most like assistance with or relief from and focus research on those areas. For example, I can imagine someone enjoying her ability to hyperfocus, having learned to live with and no longer minding her differing methods of communication, but being in a lot of mental anxiety because of sensory overload situations. Or someone may have few issues with sensory overload, but really want alternative communication methods – both informational and emotional. (Although I think it’s also important for others to learn new ways of communication, especially the parents.  Pthalo, I think your ideas for doing so are excellent.)

    In terms of potential “treatments,” to an outsider, sensory overload seems like it would be both the most difficult to adjust to in society and the simplest to treat. Finding a non-permanent pharmaceutical solution that could allow someone to “turn down” their senses could help a lot of people and would have the advantage of having a freedom of choice aspect built in. Ideally, someone could choose their level of sensory input depending on the dosage of drugs and whether they decided to take it at all or not. Those who have sensory overload, would that be something you would want, or do you consider that too essential to change at all?

    *Edited for line breaks. I also added another sentence in while I was editing anyway, because I’m like that.

  • http://willbikeforchange.wordpress.com/ storiteller

    Okay, my comment now just says [object object] so I’m cutting and pasting it here.

    I think the variety of aspects involved in autism is what makes the “deaf” analogy break down. Deafness influences one major, specific sense, whereas autism affects not only what sensory input someone has, but also how they process and react to it. And each of these aspects can have very different advantages and disadvantages depending on the person. As others have said, that’s why the idea of “curing autism” makes little sense.

    Instead of trying to find an overall cure or prevention, it seems like it would make a lot more sense to ask autistic people what aspects they would most like assistance with or relief from and focus research on those areas. For example, I can imagine someone enjoying her ability to hyperfocus, having learned to live with and no longer minding her differing methods of communication, but being in a lot of mental anxiety because of sensory overload situations. Or someone may have few issues with sensory overload, but really want alternative communication methods – both informational and emotional. (Although I think it’s also important for others to learn new ways of communication, especially the parents.  Pthalo, I think your ideas for doing so are excellent.)

    In terms of potential “treatments,” to an outsider, sensory overload seems like it would be both the most difficult to adjust to in society and the simplest to treat. Finding a  non-permanent pharmaceutical solution that could allow someone to “turn down” their senses could help a lot of people and would have the advantage of having a freedom of choice aspect built in. Ideally, someone could choose their level of sensory input depending on the dosage of drugs and whether they decided to take it at all or not. Those who have sensory overload, would that be something you would want, or do you consider that too essential to change at all?

    *Edited for line breaks.  I also added another sentence in while I was editing anyway, because I’m like that.

  • Nix

    I completely agree with all of that. Sensory overload is definitely severely disruptive, definitely without positives, definitely seems easiest to fix, and definitely worth fixing if possible. Things like attention-control are probably harder, and have more downsides (e.g. people on Ritalin have reported loss of hyperfocus). Things like social modelling would probably require godtech to fix and it’s questionable whether you’d still be *you* afterwards.

  • http://willbikeforchange.wordpress.com/ storiteller

    Things like social modelling would probably require godtech to fix and
    it’s questionable whether you’d still be *you* afterwards.

    I know if I was on the spectrum (although I do have a few quirks similar to those who are), I wouldn’t want a pharmaceutical solution to the social issues.  Rather, it seems like helping people find social “tools” they can adapt to their needs – whether technological like the Internet or cues that can give them direction in conversation –  would be for the best.  In terms of “autistic children miss out on many childhood developments,” research is showing that early intervention in therapy is making a large difference.  Many times the brain wiring is still somewhat different from neurotypicals, but the kids gain those tools much earlier on and can use them more readily.

  • Anne

    I have to say, I take issue with the way that you portray autism here. You seem to conceive of it as a terrible struggle for the parent, and a miserable life for the child. I can tell you from my experience (growing up with an autistic brother, living with autistic friends) that it is not necessarily either. I love my brother, and I wouldn’t trade him for a non-autistic brother: he’s happy the way he is, and I’m happy for him. When he was diagnosed, it wasn’t a horrible thing where we gathered around in the living room and cried, it was a beacon of light: “Now we know why he acts this way; now we know how to make his life easier.” (Or, in my brother’s case, “Now *I* know why I act this way.”) My parents don’t want a different son; they want my brother.


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