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.

  • 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…

  • 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.

  • 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.

  • 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.”

  • 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:)

  • 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!

  • 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.

  • 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://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. 

  • Anonymous

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

  • 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.

  • 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.

  • 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.”

  • 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. 

  • 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

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

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

    O Rly?

  • 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).

  • 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).

  • 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://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.

  • 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.

  • 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.

  • 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?

  • 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

    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.

  • 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.

  • 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://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://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?

  • 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?]

  • 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…

  • 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.

  • 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.

  • 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.

  • 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.

  • Dr. Rocketscience

    Bad Chemist. No Cookie. ;-)

  • 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.

  • 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. 


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