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.

  • 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.

  • 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.

  • 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.

  • 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

    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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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. 

  • 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.

  • 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.

  • 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.

  • 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. 

  • 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).

  • 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

    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?)

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.)

  • 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.)

  • 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.

  • 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.

  • 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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