The Autism Peril


The latest media frenzy is over reports that Russia had compromising information about Trump’s sexual practices and other sad, bitter, pathetic obsessions. I don’t care. The Trump name is already so thoroughly soiled that the fact that the allegations are entirely plausible tells us all we need to know about the dignity and gravitas the man brings to the office. He has pissed all over our country’s reputation and has already been long known for his pettiness, his cheesiness, and his total lack of class, so it really doesn’t do any more damage to the Trump brand than everything else he has done. In a pissing contest between his crassness and his bedroom habits, the fact that there is a pissing contest at all means he has already lost.

But here’s a different name that is being flushed down the toilet: Kennedy. I grew up when the Kennedy name was almost magical: it was Camelot, it was glamorous liberalism, it was tragedy. And now Robert F. Kennedy, Jr. is doing his best to make it synonymous with crankery and quackery and incompetence. Good job, scion of a the John & Robert Kennedy political dynasty!

Anyway, RFK Jr met with Trump — which was troubling enough, especially after Trump had met with Andrew Wakefield as well — and came away with the startling announcement that he was going to chair a commission on vaccination safety and scientific integrity. He is not qualified! His head is packed full of pseudoscientific nonsense on this subject, so we need a stronger word…he is anti-qualified. This is as criminally antithetical to the goal of such a committed as appointing Myron Ebell to head the EPA. It’s a clear signal that Trump intends to wreck preventative medicine in the USA.

Of course, this immediately provoked a sewer overflow of criticism on social media, and we already know how responsive our fickle president-elect is to the noise there, and Trump walked that claim right back. No, RFK Jr will not lead a commission on vaccine safety, but one on autism.

Vaccines, autism, same topic, right? We can tell what kind of bullshit the two of them were slinging in that convo by the fact that they link those two together, when we know from the science that there is no connection between vaccines and autism. We know that Trump is dead wrong on this subject, but he has brought it up repeatedly over the years, and you just know he’s itching to push lies into the science.

Remember when Trump said this in the debates?

I’m totally in favor of vaccines — but I want smaller doses over a longer time.

You are not a doctor, Donald Trump. Neither is Robert F. Kennedy, Jr. It was doctors who worked out a vaccine schedule, using empirical data to optimize as best they can. Contrary to your conspiracy theories, doctors also have no vested interest in inducing autism. I can’t even imagine what convoluted reasoning you would invoke in order to invent a connection, but I’m sure you’ve got some stupid, flimsy excuse that won’t hold up under any rational inspection.

But just read Orac’s commentary — he rips the routine nonsense promoted by anti-vaccine ideologues apart. It’s actually easy. What always impresses me is the lack of rigor and the unimaginative repetitiveness of the anti-science advocates. Like creationists, the anti-vaxxers have a limited litany of tropes they repeat endlessly, which makes it easy but dead dreary to shoot them down…but with the awareness that they’ll just ignore the rebuttals and repeat the same ol’ same ol’ all over again.

One more thing I have to mention, though: one part of the anti-vaxxer litany is to deplore the rising tide of terrible, damaged people as a consequence of the autism epidemic. The problem with that, of course, is that it treats autistic people as garbage, and as a plague that must be ended. I know autistic people. You know autistic people. Some of you are autistic. It’s a different way of thinking that can (but doesn’t always) conflict with expected social norms. You might just as well howl in protest at the rise of people who think scientifically, or artistically, or are glibly sociable, or are atheists. What are you going to do, go on a campaign to eradicate poets? I wouldn’t put it past these people who are so quick to demonize others who don’t fit their mold.

Adapt or die. Autistic people are first and foremost people, and if they are increasing in numbers, we need to consider helping society to accommodate itself to them. We can see through the coded language and dog whistles to your true desired solution: you despise and want to eliminate our children.

Comments

  1. iknklast says

    What are you going to do, go on a campaign to eradicate poets

    Probably wouldn’t be the first time.

    Seriously, for Trump, the only qualification for anything seems to be glorifying Trump, and agreeing with him about his brilliance…and looking the part. Robert Kennedy is not going to be any more of a disaster than the people he has put in Education, EPA, etc…all of those posts will lead to consequences that will hurt the working class most, the middle class a lot, and make the rich richer.

  2. says

    “You might just as well howl in protest at the rise of people who think scientifically, or artistically, or are glibly sociable, or are atheists.”
    And they do….they do

  3. jrkrideau says

    What are you going to do, go on a campaign to eradicate poets?
    Of course not, but about 90% of modern musicians? Humm…

    Well, time to start strengthening our border controls. It look like we will need vaccination certificates from every US resident entering the country. It still won’t control things but it may cut down on the mini-epidemics.

    Mexico may actually be willing to pay for that wall. It will need the protection from US residents importing diseases.

    It is amazing, every time you think that even Trump cannot do worse he manages to sink even lower.

  4. says

    I’m autistic (Asperger’s, specifically), and thank you, PZ. During my visits to Respectful Insolence, I’ve seen how the anti-vaxxers talk about autistic people, both their trolls and their gurus’ public relations. It’s like anti-vaxxer parents think of their autistic kids as defective toys. I’ve read so much rhetoric from people who think they can cure autism, speaking as if we’re just a throwaway shell hiding the multiclass doctor/athlete/president they wanted.

    Thank you for calling attention to that.

  5. slithey tove (twas brillig (stevem)) says

    Joe Kennedy is keeping the name valuable, even while RFK Jr is destroying it. When people rail against “Kennedy” I decide to keep reading to see which they are railing against. Joe set up a half-price oil heat service for the disadvantaged. And, I think, refused national politics to stay in Local politics and manage the economy oil supply.
    Thanks Joe.
    F#ck you Robert.

    speaking of autism… I’ll bring up mention of the accusations that Trump’s 10 yo son is autistic. Which was a brief observation of his behavior during one of Trump’s well attended farts; which Trump quickly took as insult and tweetly denied.
    If it was actually the case, could be his motivation for appointing the aut-vax-quack “to investigate vaccine effect on autism occurrence”

    I’ll also mention, without assertion, that his autism may fit in with Trump’s statement “my 10 yo kid can do anything with a computer. Is a computer whiz, anything at all” Which sounds to me like a parent praising an autistic child who is focused on a single type of device and becomes skilled at exercising every detail of its functionality.
    Sorry, I’m not in favor of that stereotype, just a cynical observation. excuse me for brain farting.
    ?

  6. whheydt says

    I have come to the conclusion that Trump’s method to “drain the swamp” is to put the alligators in charge.

  7. whywhywhy says

    The anti-vaxxers are an interesting lot in that there appear to be two main groups: 1) religiously based nutters (such as a brother of mine) and 2) holistic medicine nutters (no relations but I have many acquaintances) who like to discuss toxins and chemicals (without understanding either word). Generally these two groups stay away from each other but on this topic they are both equally ill-logical and deny the results of science. Both groups state they love their children and are very much loving their children to death.

    Are there other groups in the anti-vax camp?

  8. whheydt says

    Re: Bronze Dog and Slithey Tove…

    I have seen clams that there is a correlation between the upper edge of autism spectrum and both SF Fandom and computer programming. I can think of ways such a correlation could exist, and it might extend to engineering in general. If so, that would suggest that we may owe technology itself (or at least a more rapid development of technology) to the existence of the autism spectrum. In this I am not being specific to “modern technology”.

  9. robro says

    I too thank you, PZ. I was thinking very nearly the same thing when I heard the latest Trump blah blah yesterday, and then the Kennedy crap. We don’t need more evidence that Trump is a creep, a jerk, and an all around asshole.

    But anti-vax really pisses me off. My adult son was diagnosed with Asperger’s, among many other things, when he was a child. He has his difficulties with life, for sure, but he’s very smart and capable. He’s found something he likes to do (programming) and has a chance to finally break into independent adulthood. Yet, these jerks want to funnel money to a raft of already wealthy lawyers to pursue anti-scientific nonsense, while they are hell bent one making it impossible for him to get insurance.

    And it really gets me is that my brother and sister-law, and other relatives supported this madness because they have stupid opinions about black people.

  10. says

    Many of us are adept at technical skills because we’re detail-oriented and have an easier time understanding deterministic or reductionist systems. It’s people that are complicated and difficult to predict for us.

    Before the big advances in technology, I suspected our predecessors probably tended toward things like mathematics, philosophy, architecture, and mechanical pursuits.

  11. numerobis says

    “make the rich richer”

    That’s not the goal. The goal is clearly demonstrated to be making the gap bigger, even at the cost of impoverishing the rich.

    You can tell because arguments about how a policy will make both the rich the poor richer too are not effective, whereas arguments about how a policy will make the poor poorer but have no effect or even a slight cost on the rich *are* effective.

  12. numerobis says

    Bronze Dog: of blacksmithing or farming or hunting or …

    There’s much more space for the socially awkward (autistic or otherwise) in a traditional society. Modern society is far more interconnected.

    Even in programming: my shyness (not autism-related as far as I know) is a major impediment to success, a struggle I have to constantly overcome. I can design or use impossibly complicated systems, formulate and solve difficult mathematical problems, and implement rock-solid and well-documented and useful software. But I need to ask an artist whether the button should be on the left or on the right? Panic!

  13. jrkrideau says

    # 7 whywhywlhy

    Are there other groups in the anti-vax camp?

    I don’t think we have a taxonomy but conspiracy theorists, in general seem prone and there is a large group of grifters battening off parents. etc.

    Andrew Wakefield comes to mind but there are lots of creeps out there willing to sell you all sorts of potions, machines and weird diets which you must buy from the author, and possibly the Brooklyn Bridge as an astral projection machine to cure for autism. Bleach enema anyone? Often these people seem to make Climate Deniers look rational, well almost anywhy.

    However it can be hilarious when Climate Denial Conspiracy Theorists and Big Pharma Vaccination Theorists run into one another on a common issue.

  14. says

    Bronze Dog

    It’s like anti-vaxxer parents think of their autistic kids as defective toys.

    I cannot tell you how sickening I find that attitude.
    First of all, Autism covers a very broad range. As a parent of a kid on the spectrum I am fully aware that my experience is not universal. My kid’s highly verbal and can live quite well with changes in schedule or such (but will totally lose control when something else doesn’t meet her expectations) and I have deep sympathy with parents who need to structure a large part of their lives around the needs of their child.
    But my child is not a broken toy. The things that make her sometimes difficult* also make her brilliant at other times. I don’t despair at my child (ok, I sometimes do, but all parents know that feeling), I am worried about her finding a place in a society that doesn’t deal well with folks like her.

    *And I see many of her “autistic traits” in her “neurotypical” father, which is why the two of them get along like a house on fire as both of them will come off needlessly pissy and overaggressive at times to which they react sensitively.

    +++
    Looks like the new government is truly determined to kill and maim as many Americans as possible. No vaccines and no health coverage when you get sick…

  15. What a Maroon, living up to the 'nym says

    I’ll bring up mention of the accusations that Trump’s 10 yo son is autistic.

    (Bolding mine.) Not accusations; that implies that being autistic is a character flaw that the autistic person should endeavor to change. Better to call it a claim or assertion (one based on very flimsy data).

  16. ayarb003 says

    Your last paragraph reminds me of an educational course I took about working with students with special needs. The professor emphasized repeatedly the necessity of person-first language. Rather than saying “the autistic child” or “wheel-chair bound girl”, finding the time to say “the child on the autism spectrum” or “the girl who travels in a wheelchair”.
    Subtle but important changes.

  17. slithey tove (twas brillig (stevem)) says

    re @15:
    I apologize.
    My mistake.
    I was trying to say “It was hurled as an accusation“. In a JAQ form.
    I was not trying to characterize it as an accusation itself.
    I understand how I said it incorrectly.
    I sincerely apologize.
    — I could have least left accused in scare quotes in my first use, to indicate it was being misapplied. hit me

  18. chris61 says

    You all seem to be making the same arguments about autism that many anti-vaxxers make about polio or measles or whooping cough. Lots of people with autism lead happy and productive lives as do the majority of children who get any of the diseases that vaccines are meant to prevent. Doesn’t mean they aren’t all disorders/diseases well worth eliminating.

  19. chris61 says

    Sorry Giliell but the only person I personally know with autism is the son of some friends of mine. He’s about fifteen now, non-verbal and prone to violent outbursts. He’s been in a group home for the last four or five years because his parents are unable to physically control him. Before that they used to get investigated by CPS (child protective services) at least once a year because some person new to their neighborhood would report a child screaming and think he was being abused. You should tell them how autism isn’t really a problem.

  20. says

    Things that are beneficial in some respects and contexts should not be called diseases or disorders.

    Yes there are cases where suffering is involved. Those are what medicine rationally addresses, as it should. There is a whole world outside of that for 2-3% percent (Autism), 0.5-1% Tourette’s Syndrome), 5% (AD(H,D)) and other ways of feeling the world. That’s probably related to arguments for selection of things we call mental illnesses by evolution.

    I use that as a tentative assumption in rational ways.

  21. Greta Samsa says

    Aside from constant jackassery towards Autistic people, I’ve never understood their means of ignoring evidence. They can be shown conclusively that they are wrong, but will either invent some means of weaseling out of it, or agree that they’re wrong but continue anyway. Don’t they understand that it’s bad to encourage people to harm their kids for nothing? Don’t they realize internally that they’re wrong, once it’s been shown to them?

  22. Jessie Harban says

    @PZ, OP:

    I know autistic people. You know autistic people. Some of you are autistic. It’s a different way of thinking that can (but doesn’t always) conflict with expected social norms.

    Seriously? Speaking as one of those autistic people you may know, it’s not “a different way of thinking.” It’s a disease that can be (but isn’t always) severely debilitating.

    There is an extremely vital distinction between wanting to eliminate a disease and wanting to kill people who have a disease. That many people want to kill me because I’m autistic doesn’t mean that autism isn’t a disease that I’d be rid of in a second if I could.

    @Bronze Dog, 4:

    I’ve read so much rhetoric from people who think they can cure autism, speaking as if we’re just a throwaway shell hiding the multiclass doctor/athlete/president they wanted.

    I can’t speak for anti-vaxxers or any variety of parents, but I’ve always thought of autism as a throwaway shell hiding the author/artist/functional human that I really am.

    I’ve also noticed a fundamental divide between people who think of autism as a thing you are and people who think of autism as a thing you have. It’s not just a linguistic distinction like person-first language; it’s an indicator of a massive difference in how one approaches the condition. Since I view autism as a thing I have, I cheer along with attacks on autism. Why not? I’d like to be rid of it myself. People who have Macbooks are best equipped to tell you Macbooks suck. But for someone who views autism as a thing they are, an attack on autism the condition is an attack on them the person.

    @14, Giliell:

    First of all, Autism covers a very broad range. As a parent of a kid on the spectrum I am fully aware that my experience is not universal.

    That. Exactly that. Autism can be severely debilitating (maybe often severely debilitating) but it’s not always severely debilitating. Sometimes, it’s not debilitating at all. Sometimes it can even seem like a good thing.

    The problem is that the minority who are not disabled (or only slightly disabled) become the public face of autism advocacy and the autism movement because the severely debilitated are too debilitated for activism and movement-forming.

    @chris61, 18:

    You all seem to be making the same arguments about autism that many anti-vaxxers make about polio or measles or whooping cough. Lots of people with autism lead happy and productive lives as do the majority of children who get any of the diseases that vaccines are meant to prevent. Doesn’t mean they aren’t all disorders/diseases well worth eliminating.

    Yeah, I noticed that.

    I think the key distinction is that no one thinks of “polio survivor” as an identity that is inherent and fundamental to who they are, and which puts them in a group that needs to continue existing in its own right. The anti-vaxxers are mostly vaccinated people who assume a disease they never had or saw can’t be that bad while the autism-normalizers (or whatever I should call them) seem to be dominated by people who technically have autism but have such a minor case of it that it doesn’t substantially impede their ability to function.

    Autism is actually kind of a special case, though, because many of the people who are non-disabled are not completely asymptomatic. So cramped around one end of the spectrum are people who just need a few minor accommodations that society unjustifiably refuses to provide, but further along are people like me who can’t live happy lives even with accommodations for which the only options are cure, misery, or death. And even further along are the autistic people who can’t communicate at all, whose opinions and feelings we can only speculate about.

    In a sense, that’s three different conditions classified under the label “autism,” and people in Category 1 just don’t mean the same thing by “autism” as the people in Category 2.

    @Giliell, 19:

    Hey, look, Chris 61 being spectacularly wrong as usually.
    You could, of course, read what the people on the spectrum say themselves, or keep trying to shoot cheap “gotchas”

    I’m on the spectrum, and I say myself that I appreciate Chris 61’s comment at 18. Considering all the misery autism has caused me in general and all the misery it’s causing me at this specific moment, I appreciate anyone willing to acknowledge that it is a disease and does cause misery in a thread where many people simply deny and dismiss my lived experience.

    @chris61, 20:

    Sorry Giliell but the only person I personally know with autism is the son of some friends of mine. He’s about fifteen now, non-verbal and prone to violent outbursts.

    I’m not 15, I’m not nonverbal, I’m not prone to violent outbursts, and I’m not in a group home (yet) but anyone who wants to tell me that autism isn’t really a problem can go fuck themselves with a clue (since they can’t think of anything else to do with one).

  23. gijoel says

    One more thing I have to mention, though: one part of the anti-vaxxer litany is to deplore the rising tide of terrible, damaged people as a consequence of the autism epidemic. The problem with that, of course, is that it treats autistic people as garbage, and as a plague that must be ended.

    This so much. I’ve worked as a carer for autistic people for close to 20 years now, and it pisses me off so much how autism is seen as an terrible affliction. Do kids with autism need higher support? Yes, but so do kids with spina bifida, cystic fibrosis, or asthma. Having any of those conditions doesn’t mean you can’t live a full, and productive life.

  24. chris61 says

    @24 gijoel

    Do kids with autism need higher support? Yes, but so do kids with spina bifida, cystic fibrosis, or asthma. Having any of those conditions doesn’t mean you can’t live a full, and productive life.

    Here’s my question for you. Spina bifida is a birth defect that can be at least partially prevented by having pregnant women take folate. Do you believe the recommendation that a pregnant woman take folate is treating people suffering from spina bifida as garbage? Obviously there is no comparable link between autism and vaccines but there could be a comparable link between autism and something in the environment and I really don’t see how any reasonable person can consider that attempting to find that something and reduce or eliminate it would be a bad thing.

  25. Jessie Harban says

    @Greta Samsa, 22:

    Aside from constant jackassery towards Autistic people, I’ve never understood their means of ignoring evidence. They can be shown conclusively that they are wrong, but will either invent some means of weaseling out of it, or agree that they’re wrong but continue anyway. Don’t they understand that it’s bad to encourage people to harm their kids for nothing? Don’t they realize internally that they’re wrong, once it’s been shown to them?

    I lack the spoons for Full Eloquence at the moment and dipping below a certain eloquence threshold is a bannable offense on Pharyngula so ideally I should break task and come back once the spoon drawer is looking a little less sparse, but the basic gist from my experience is that there’s a sort of obsession that feeds on the sunk costs fallacy or something?

    Basically, once you’ve invested a certain amount of time and money and effort into a particular treatment, it becomes very hard to admit it was all wasted— and even harder to admit it was counterproductive. Especially if the condition is getting worse, and the urgency of treating it is thus greater.

    Mind you, my experience pursuing treatment for myself as an adult isn’t necessarily the same as neurotypical parents pursuing treatment for their children, but I suspect there’s at least some analogy. Parents are less responsive since they aren’t suffering from either the condition or the bullshit treatments, but neurotypical parents don’t need to carefully budget spoons for changing directions the way I do.

    @gijoel, 24:

    Do kids with autism need higher support? Yes, but so do kids with spina bifida, cystic fibrosis, or asthma. Having any of those conditions doesn’t mean you can’t live a full, and productive life.

    Adult with autism. Can’t live full and productive life. Doubt I ever will unless I can find treatment.

    Autism is a terrible affliction some of the time (maybe even most of the time). That some people who have it live full productive lives in spite of it doesn’t make it less of a terrible affliction.

    After all, most people who got measles have no trouble living full productive lives in spite of it. Yes, kids with measles need much higher support for the week or so they have it, but having it doesn’t mean you can’t live a full and productive life.

    So I’m gonna become an antivaxxer. My parents got measles before the vaccine was invented and I’m sick of measles-havers being treated like garbage and a plague that must be ended! Or maybe I could understand that a disease is not the same thing as a person with the disease and actually fight to have the disease cured (or prevented or treated or as close to any of those as we can get).

    Also, did you seriously include cystic fibrosis on your list of non-afflictions? Cystic fibrosis, which until relatively recently basically guaranteed death by the age of 20 and even now limits your lifespan to about 37? I doubt you’ll find a lot of people with cystic fibrosis who deliberately forgo treatment and die at 20 because they’re in the “no-cure” camp and believe that treating it to extend their lifespan is the same thing as killing them and/or treating them like a garbage plague to be wiped out. In fact, if I invented a more effective treatment that all but eliminated the symptoms of cystic fibrosis, I bet everyone would jump on it.

    Maybe if there was a group of people who technically have cystic fibrosis but are almost asymptomatic, then they would form a movement advocating that cystic fibrosis is not a disease and shouldn’t be treated.

  26. says

    I got it. The rising tide of terrible, damaged people is actually a consequence of the anti-vaxxers epidemic, and they’re a garbage plague that must be ended!

    The, um, ideas they say, I mean. Obviously.

  27. says

    Autistic people are first and foremost people, and if they are increasing in numbers, we need to consider helping society to accommodate itself to them. We can see through the coded language and dog whistles to your true desired solution: you despise and want to eliminate our children.

    I’m not even convinced autistic people are really increasing in numbers, at least as a percentage of the population. The, er, symptoms which are considered signs of autism have been expanded over the last 30 or 40 years, and the tests have been adjusted repeatedly. If you tested the adult population thoroughly, I suspect you would find that a much larger percentage of adults are autistic by 2016 standards then were considered autistic by the standards of the era in which they grew up. They were just considered weirdos, or nerds, or misfits, and mocked instead of accommodated. (And, as is so often the case, a lot of them resent the idea that younger people should have an easier time than they did, and resist the idea of making adjustments.)

  28. Jessie Harban says

    @28, The Vicar:

    They were just considered weirdos, or nerds, or misfits, and mocked instead of accommodated.

    Don’t forget “lazy.” I don’t have enough spoons to coordinate even fairly simple tasks, so working is impossible, as is anything requiring a set schedule. Under the circumstances, I’d be a prime candidate for “lazy.” After all, I don’t work and there’s no clear physical reason that an uneducated bystander would notice so that must be “laziness” right?

  29. gijoel says

    Yay @25 and @26 the anti-vaxers have come out of the woodwork. Yay I can pathologise a disorder that I don’t understand and blame it on shadow figures and medical procedures I don’t want to/can’t understand.

    Sure I’ll give you your point. It is entirely reasonable to take medications or supplements to prevent a disorder from occurring. But by your point it is entirely justified to take vaccinations to prevent infection from a disease. Explain to me how that’s different?

    @26 From my research the average life span of cystic fibrosis sufferers is 37. Horribly young I grant you, but that doesn’t deny them the right to go to school/uni, pursue a career they enjoy, forming loving relationships with others, and perhaps even starting a family. What should they do? How do you think they should live their lives? Would they appreciate those that don’t suffer from their conditions to make dubious, unverifiable connections with medical procedures?

    You seem to think that I’m against finding cures for the conditions I listed. I’m not, and I would welcome any ‘cures’ for them the moment they provide reliable and effective.

    You also seem to be suffering under the delusion that measles isn’t that bad. I suggest you look up measles encephalitis and ubacute sclerosing panencephalitis. They’re not fun. Neither was the case of measles I had when I was a kid.

  30. chris61 says

    @30 gijoel

    It is entirely reasonable to take medications or supplements to prevent a disorder from occurring.

    Do you also agree that wanting to prevent a disorder from occurring is not dismissing the humanity of those who live with that disorder?

  31. Azkyroth, B*Cos[F(u)]==Y says

    Autism is unlike any of those other conditions in that many if not most forms of it would be completely unproblematic were those who have them not surrounded by, and massively outnumbered by, non-autistics.

  32. Jessie Harban says

    @gijoel, 30:

    Yay @25 and @26 the anti-vaxers have come out of the woodwork.

    Anti-vaxxer? Moi?

    Yay I can pathologise a disorder that I don’t understand and blame it on shadow figures and medical procedures I don’t want to/can’t understand.

    Seriously? I have spent a great many years being forced to intimately understand autism whether I wanted to or not (and I didn’t). I’ve spent over a year just trying to get approved for treatment for it.

    So if you’re referring to autism, you are way off.

    Sure I’ll give you your point. It is entirely reasonable to take medications or supplements to prevent a disorder from occurring. But by your point it is entirely justified to take vaccinations to prevent infection from a disease. Explain to me how that’s different?

    Not seeing a difference here. If you can prevent a disorder or disease, do it.

    @26 From my research the average life span of cystic fibrosis sufferers is 37. Horribly young I grant you, but that doesn’t deny them the right to go to school/uni, pursue a career they enjoy, forming loving relationships with others, and perhaps even starting a family.

    No, it doesn’t deny them the right to do any of those things but it may potentially deny them the physical ability to do some of them.

    Autism denies me the ability to pursue a career I enjoy (or work at all). It denies me the ability to even pursue hobbies I enjoy. It denies me the ability to form loving relationships indirectly by making it impossible for me to leave the house and establish more than transient social contact with anybody.

    So in what sense is autism not a disease? If cystic fibrosis robs people of the ability to reach their 40th birthday, how is it not a disease?

    What should they do? How do you think they should live their lives? Would they appreciate those that don’t suffer from their conditions to make dubious, unverifiable connections with medical procedures?

    Whatever they want, however they want, and almost certainly no, respectively.

    Same with autism. Same with measles or polio or any other disease.

    As I’ve tried to express, there are people who want autistic people to be killed. There are people who believe that autism makes you inherently less than fully human. There are people who blame autism on vaccines. There’s considerable overlap between those groups. But none of that changes the fact that autism is a disease. My life is not inherently less valuable because I’m autistic and I am not autistic because of vaccines, but I am severely disabled as a result of autism and that makes it incredibly unpleasant to hear people dismiss autism as “just another way of thinking” that society should be more accepting of (especially when the people who say it are anything but accepting).

    You seem to think that I’m against finding cures for the conditions I listed. I’m not, and I would welcome any ‘cures’ for them the moment they provide reliable and effective.

    My mistake then.

    You also seem to be suffering under the delusion that measles isn’t that bad. I suggest you look up measles encephalitis and ubacute sclerosing panencephalitis. They’re not fun. Neither was the case of measles I had when I was a kid.

    Nothing of the sort; I’m well aware of how terrible measles can be.

    The point I was trying to make was that you seemed to understate just how terrible autism is— you dismissed the idea that it’s a terrible affliction and said that it’s no bar to living a full and productive life. My lived experience makes clear that it is a terrible affliction (at least some of the time) and it does completely prevent its victim from having a full productive life (at least some of the time).

  33. Jessie Harban says

    @ Azkyroth, B*Cos[F(u)]==Y, 32:

    Autism is unlike any of those other conditions in that many if not most forms of it would be completely unproblematic were those who have them not surrounded by, and massively outnumbered by, non-autistics.

    Speaking as one someone with one of the other forms, can I continue to refer to autism as a disease?

  34. says

    One of the problems with referring to autism as a disease is the whole spectrum thing. Feel free to refer to your brand of condition as a disease. It’s a bit too wide of a blanket term in general, though. I for one shall refer to the brand they said I have as The One True Way™. No, I actually won’t. I also won’t refer to hot dogs in a bun as sandwiches, but that’s a little off-topic.

    There’s a different bucket of shrimp between one who barely considers themself functional and one who considers themself very functional and things would just go a lot smoother if you so-called normals would just get with the figgin program. At that point the latter is more like what passes for normal than the former. Maybe there should just be entirely different terms? It’s like, hey, red’s a color, and green’s a color, so they must be similar!

    ps vaccines are good, rah rah rah

  35. Jessie Harban says

    There’s a different bucket of shrimp between one who barely considers themself functional and one who considers themself very functional and things would just go a lot smoother if you so-called normals would just get with the figgin program. At that point the latter is more like what passes for normal than the former. Maybe there should just be entirely different terms?

    Good idea. Let’s have different terms.

    There’s basically nothing in common between someone who can barely function due to autism and someone who just looks a little odd— and I’ve been both and nearly everywhere in between. I usually refer to my college-age self as “neurotypical” just because there’s no comparison between then and now but presumably I was always autistic even when my symptoms were in remission. It’s complicated because I wasn’t formally diagnosed as autistic until after I was completely disabled.

  36. says

    For all those who want to cure Autism™ *, which part of my daughter do you want to cure?

    *instead of “this severely debilitating form from which this person really suffers” As I said in my very first post, I acknowledge that there are huge differences between people on the spectrum.

  37. Jessie Harban says

    @Giliell, 37:

    For all those who want to cure Autism™ *, which part of my daughter do you want to cure?

    I’m not sure that’s really a valid question.

    It feels a bit like asking: “For all those who want to cure Cancer™, which part of these cancer patients do you want to cure?”

    I mean, a disease by its nature tends to cause distress. A cure removes that distress. If the disease is asymptomatic (or the symptoms are mild enough to disregard) then no cure is necessary. Even if a cure is necessary, it seems odd to describe it in that way— it presumes autism as something you are whereas I always view it as something I have, so removing my autism wouldn’t change any part of me.

    It also seems odd that you conflate the idea of inventing a cure with the idea of forcing your daughter to take it. Inventing a cure for a disease doesn’t override basic concepts like bodily autonomy; if the disease cured is sometimes harmless, why wouldn’t the debilitated people line up for the cure while the non-debilitated ones politely decline? Why does a cure for me impact your daughter in any way?

    Out of curiosity, do you support compulsory flu vaccines? It’s a very valuable preventative treatment with basically no side effects, and unlike autism, the flu is contagious so failure to get vaccinated can put people other than yourself at risk. Even so, I feel iffy about making it compulsory for adults to get vaccinated.

  38. says

    @#37, Giliell, professional cynic -Ilk-

    For all those who want to cure Autism™ *, which part of my daughter do you want to cure?
    *instead of “this severely debilitating form from which this person really suffers” As I said in my very first post, I acknowledge that there are huge differences between people on the spectrum.

    The assumption seems to be this: “if you could prevent anyone from having autism ever again, would you do it?” If that question were valid, then I think most people would, on consideration, say “yes, I would, the misery that people at the end of the spectrum go through is great enough that it would be beneficial overall”.

    But the question is an invalid one to begin with: we don’t know very much about the mechanics of autism, so we can’t really say whether it’s one condition with a spectrum (although we say it is right now) or whether it’s a series of conditions which are similar (or often appear alongside each other) but have different severities, and we don’t know the causation so we can’t say whether it’s something which could have its cause removed or whether there are multiple causes. (We don’t even know whether it’s always totally a physical condition or whether a significant number of cases are part physical and part psychological. That’s a pretty big lump of ignorance to have, if we’re talking about “curing” it!) There’s no particular reason to believe — other than the assumption that all problems are simple and have simple solutions — that there’s a magical cure-all which will somehow make the question of “should we cure autism” even make sense.

  39. Jessie Harban says

    @The Vicar, 39:

    While the idea of a single “cure” is as absurd as a single “cure” for cancer, the logic applies just as readily to the process of incremental treatments that are likely to be developed; it’s a linguistic shortcut more than anything else.

    As for prevention, that’s another issue entirely. It’s at least possible that we’ll be able to develop prenatal screening for autism, and issues of prevention will inevitably come up.

    In the meantime, I’m pretty certain there’s at least some genetic component to autism, so I’ll be contributing to the cause of prevention by refusing to reproduce.

  40. chris61 says

    @39 Vicar
    My point isn’t about curing autism but about reducing its incidence. If there is an environmental contributor (like smoking is to cancer or lead poisoning is to brain development) then identifying that contributor is worthwhile.. Vaccines don’t appear to be it but something else might be.

  41. says

    Jessie Harban

    I mean, a disease by its nature tends to cause distress. A cure removes that distress. If the disease is asymptomatic (or the symptoms are mild enough to disregard) then no cure is necessary. Even if a cure is necessary, it seems odd to describe it in that way— it presumes autism as something you are whereas I always view it as something I have, so removing my autism wouldn’t change any part of me.

    See, that’s the problem: your personal view and feelings, however descriptive they are for your personal situation, don’t fit the things we know about autism very well. That’s why it’s also generally not classified as a disease.
    You also seem to claim that people whose autism doesn’t disable them are “asymptomatic” instead of accepting that those are different forms.
    Autism means the brain processes information differently. Among those who say that while their autism does impact their lives, it is often because neuroptypical people are ignorant, they also report beneficial effects. So yes, it is part of who they are.

    Jessie Harban

    It’s at least possible that we’ll be able to develop prenatal screening for autism, and issues of prevention will inevitably come up.

    1. Really? How? Right now autism diagnosis is often by making people answer lots of questions…
    2. That’s not really prevention in the sense of “we can prevent spina bifida by giving people folic acid.” While I support abortion for each and any reason, this is your solution: aborting all fetuses that are screened “positive” for “Autism”*

    *Again, are you talking about all autistic people?

  42. Jessie Harban says

    @Giliell, 42:

    See, that’s the problem: your personal view and feelings, however descriptive they are for your personal situation, don’t fit the things we know about autism very well. That’s why it’s also generally not classified as a disease.

    So my situation doesn’t count as autism?

    First, I think you’re greatly overestimating the number of non-disabled autistic people since non-disabled autistic people are more visible.

    Second, it is classified as a disease under the DSM. And so help me if you want to make a linguistic nitpick about “disorder” vs. “disease” or whatever. That’s not the point.

    You also seem to claim that people whose autism doesn’t disable them are “asymptomatic” instead of accepting that those are different forms.

    I know people who are autistic but (nearly) asymptomatic. I also know autistic people who are symptomatic but not disabled. I also know autistic people who are more disabled than me.

    Autism means the brain processes information differently.

    Again with the dismissal. Autism means the brain processes information “differently” in the same sense that sickled red blood cells produce hemoglobin “differently.” Yes, it’s still hemoglobin, and yes the difference produces some positive effects, and yes the presence of sickled cells isn’t always debilitating but it would be absurd to tell someone with sickle cell anemia that although their feelings about the condition are descriptive for their situation, it really doesn’t fit what we know about the presence of sickled cells, pointing to people with sickle cell trait as the “real” representatives of sickle celldom.

    Or in other words, autism is a disease and it feels as though you’re dismissing this fact by claiming that only the people relatively unharmed by it count as “True Autistics.”

    Among those who say that while their autism does impact their lives, it is often because neuroptypical people are ignorant, they also report beneficial effects.

    If you’ve conducted a survey of autistic people’s views of the condition, I question its validity on the grounds of sampling bias.

    Autistic people who are active and social enough to receive your survey invitation and respond are likely to report that autism doesn’t adversely impact their lives.

    As for beneficial effects, yes there are a few. I’d happily give them up if it meant I could become neurotypical but technically they do exist. I’m sure there are even some lucky people who have only the beneficial effects (or that the adverse effects are minor in comparison). I just wish they’d stop acting as though they are what autism means because there’s rather a lot of us who can’t organize an activist base.

    So yes, it is part of who they are.

    The number and nature and severity of its effects, adverse or otherwise, has no bearing on whether autism is something you are vs. something you have. If you were lucky enough to get only the benefits of autism and none of the considerable drawbacks, then losing them wouldn’t make you stop being you any more than losing my ability to write, draw, or function in daily life made me less me.

    1. Really? How? Right now autism diagnosis is often by making people answer lots of questions…

    I don’t know how or even if; I just said it was at least possible.

    2. That’s not really prevention in the sense of “we can prevent spina bifida by giving people folic acid.”

    No, but it’s prevention in the sense of, knowing that you have a deadly mutation in one copy of HTT, consciously choosing to reproduce only using gametes that contain the healthy allele.

    Prevention is prevention. There are already prenatal screenings for other diseases; do you oppose them?

    While I support abortion for each and any reason, this is your solution: aborting all fetuses that are screened “positive” for “Autism”*

    Jumping to conclusions much?

    I said that it was possible that some form of prenatal screening might be developed and if so, then issues of prevention will come up. I’m not sure how you get from that to a massive conspiracy to abort all fetuses that screen positive for “autism,” a condition you apparently feel the need to put in scare quotes.

    For what it’s worth, if our understanding of autism and its causes has advanced to the point where we can prenatally screen for it, it’d probably have advanced to the point where someone who feels a little socially awkward doesn’t get handed the same diagnosis as someone who can’t speak or function in any capacity. I highly doubt there will ever be a test that confirms whether or not a fetus will fit somewhere in an early-2017 understanding of the “autistic spectrum” without being more specific than that.

  43. says

    Jessie Harban

    So my situation doesn’t count as autism?

    WTF? I never said or implied that. Your feelings are your feelings and I don’t doubt that you are autistic.

    Second, it is classified as a disease under the DSM. And so help me if you want to make a linguistic nitpick about “disorder” vs. “disease” or whatever. That’s not the point.

    Well, it is. Sure, both definitions are a social consensus, but they have different words and definitions for a reason. That’S not “linguistic nitpicking”, that’s getting clear what we’re talking about and what you mean when you use certain words.

    I know people who are autistic but (nearly) asymptomatic.

    If they show no symptoms of autism, how have they been diagnosed?

    Again with the dismissal. Autism means the brain processes information “differently” in the same sense that sickled red blood cells produce hemoglobin “differently.”

    1. That’s not dismissal, that’s trying to get to the biological basis.
    2. You’re again trying to define autism via things that are not autism.

    Yes, it’s still hemoglobin, and yes the difference produces some positive effects, and yes the presence of sickled cells isn’t always debilitating but it would be absurd to tell someone with sickle cell anemia that although their feelings about the condition are descriptive for their situation, it really doesn’t fit what we know about the presence of sickled cells, pointing to people with sickle cell trait as the “real” representatives of sickle celldom.

    That’s bloody nonsense. Neither have I done such a thing nor has sickle cell anaemia anything to do with the discussion at hand. I believe that you are autistic, I believe that you are suffering, I support each and any scientific treatment that alleviates your suffering. That doesn’t mean I take you as the one and only arbiter of What Autism Is any more than I take the non-disabled autistic people.

    If you’ve conducted a survey of autistic people’s views of the condition, I question its validity on the grounds of sampling bias.

    Maybe read the part you quoted. I plainly stated my “selection bias” saying that this only applies to one subgroup.

    The number and nature and severity of its effects, adverse or otherwise, has no bearing on whether autism is something you are vs. something you have.

    I’m afraid this is a very long and philosophical debate about the nature of the “I” in Western philosophy and self concept. Short form: it has a lot to do with self-perception.

    I don’t know how or even if; I just said it was at least possible.

    That’s plain nonsense. If you have no idea what the reasons are, whether the indicators are even present in the gametes or detectable during pregnancy then you cannot claim that it is possible to screen for it.

    No, but it’s prevention in the sense of, knowing that you have a deadly mutation in one copy of HTT, consciously choosing to reproduce only using gametes that contain the healthy allele.

    That’s not “prenatal screening”.

    Prevention is prevention. There are already prenatal screenings for other diseases; do you oppose them?

    Again with the words. Prenatal screening usually refers to screening for things in an existing pregnancy, not things like pre-implantation diagnostics. But if we’re talking about actual prenatal screening: No, I don’t oppose it, but I am also aware of the philosophical and ethical issues it raises. What about screening for gay fetuses? Trans fetuses? What about sex selective abortions? While I will always come down on the side of “let this person have an abortion”, I also think that the debates an discourses are very important.

    Jumping to conclusions much?

    No. As prenatal means “during an existing pregnancy” , abortion is the obvious answer. Prenatal treatment is rare.

    I’m not sure how you get from that to a massive conspiracy to abort all fetuses that screen positive for “autism,” a condition you apparently feel the need to put in scare quotes.

    Because I live in the real world. In the real world the solution is abortion. It’s what already happens with many of the other medical conditions that are detected via prenatal screening. Maybe this all hangs on you saying “prenatal” when you don’t mean that.
    And I put “autism” in scare quotes to indicate that it’s not a monolithic uniform thing.

    it’d probably have advanced to the point where someone who feels a little socially awkward doesn’t get handed the same diagnosis as someone who can’t speak or function in any capacity.

    Who’s dismissing people now?

  44. says

    Jessie Harban

    So my situation doesn’t count as autism?

    WTF? I never said or implied that. Your feelings are your feelings and I don’t doubt that you are autistic.

    Second, it is classified as a disease under the DSM. And so help me if you want to make a linguistic nitpick about “disorder” vs. “disease” or whatever. That’s not the point.

    Well, it is. Sure, both definitions are a social consensus, but they have different words and definitions for a reason. That’S not “linguistic nitpicking”, that’s getting clear what we’re talking about and what you mean when you use certain words.

    I know people who are autistic but (nearly) asymptomatic.

    If they show no symptoms of autism, how have they been diagnosed?

    Again with the dismissal. Autism means the brain processes information “differently” in the same sense that sickled red blood cells produce hemoglobin “differently.”

    1. That’s not dismissal, that’s trying to get to the biological basis.
    2. You’re again trying to define autism via things that are not autism.

    Yes, it’s still hemoglobin, and yes the difference produces some positive effects, and yes the presence of sickled cells isn’t always debilitating but it would be absurd to tell someone with sickle cell anemia that although their feelings about the condition are descriptive for their situation, it really doesn’t fit what we know about the presence of sickled cells, pointing to people with sickle cell trait as the “real” representatives of sickle celldom.

    That’s bloody nonsense. Neither have I done such a thing nor has sickle cell anaemia anything to do with the discussion at hand. I believe that you are autistic, I believe that you are suffering, I support each and any scientific treatment that alleviates your suffering. That doesn’t mean I take you as the one and only arbiter of What Autism Is any more than I take the non-disabled autistic people.

    If you’ve conducted a survey of autistic people’s views of the condition, I question its validity on the grounds of sampling bias.

    Maybe read the part you quoted. I plainly stated my “selection bias” saying that this only applies to one subgroup.

    The number and nature and severity of its effects, adverse or otherwise, has no bearing on whether autism is something you are vs. something you have.

    I’m afraid this is a very long and philosophical debate about the nature of the “I” in Western philosophy and self concept. Short form: it has a lot to do with self-perception.

    I don’t know how or even if; I just said it was at least possible.

    That’s plain nons

  45. says

    I wanted to get diagnosed whether I have Aspergers or not. To find out how and where such diagnosis is possible in CZ is not easy, since most such services are meant for children. And I found out that I would probably have to travel a few hunderd km a multiple times and dish out non-trivial ammount of cash. Therefore I will probably have to live without diagnosis unless my situation worsenes significantly to the point when my life gets impacted more than at a social level (which is possible, especially for the depression part of the package).

    Assuming that I have mild Aspergers syndrome, I have to say that it definitively is a part of who I am. My intuitive insight into statistics might be a result, as well as my above-average capacity to remember things and having a broad spectrum of knowledge of natural sciences. It might be a reason why I excel at my job at times, because I have good eye for detail and I often spot things during tests other people miss. Me having very good fine motorics and being good at fickle manual work does not fit the picture of autistic spectrum disorders, but nobody fits the picture for this diagnosis perfectly, otherwise it would not be that difficult to diagnose.

    However I would gladly give half of my brain to be a different person, if possible. A person who is able to pick up a phone and solve a simple issue in five minutes, instead of having to delegate such tasks or procrastinate them for hours on end, because talking over phone feels unpleasant and awkward in a way that cannot be explained. A person who does not stay in a shitty job for too long, because even a small unknown change is terrifying and is to be avoided. A person who is able to pick up social cues and therefore recognise when to speak and when to shut up intuitively, and not only in my forties after years of painstaking learning by trial-awkward. A person who is able to go to a party with dearly beloved friends and actually really enjoy the occasion. A person who does not have to labouriously learn how not to insult people by speaking your mind, or answering rhetorical questions literally, or not recognizing the context when something is acceptable and when not. A person who does not get thrown off the rails by trivial changes to the shopping plan. Etc. etc.

    So I, Jessie Harban, although I am a mere Schrödingers (mild) autist, I understand what you mean.

  46. says

    @Jessie
    Why do you feel the need to emphasize autism as a disease? No one here is denying the painful reality that many with autism live with, including yours. The context here is people that act like Autism as a proper noun is a disease. You should be able to express your experience of autism but not at the expense of others.

    Have you read any articles about people with autism that have figured out how to use it? I’m not saying that it’s possible in every case, biology is often sloppy or excessive in the stuff that is part of what we are as a species (a similar case can be made for ADHD and Tourette’s Syndrome). There are a lot of reasons why our concept of mental illness needs expanded and this is one of them. If society pathologizes things intrinsic to us as a group that we will have a problem. It’s been tried with handedness, sexual orientation and more. It does not work. I think it’s a how to best be a part of society thing and everyone has work to do in fixing that.

  47. says

    @#40, Jessie Harban

    As for prevention, that’s another issue entirely. It’s at least possible that we’ll be able to develop prenatal screening for autism, and issues of prevention will inevitably come up.

    And yet even the stupidest of the anti-vaxxers is really talking about prevention and not cure. They may be utterly wrong about causation and oftentimes unpleasantly eugenics-ish, but mostly they want to stop more autism from happening.

    In the meantime, I’m pretty certain there’s at least some genetic component to autism, so I’ll be contributing to the cause of prevention by refusing to reproduce.

    Genetic? Probably, but not necessarily — or, at least, not the way you mean. The causation is murky enough that autism could yet turn out to be caused by a semi-common event, but only in conjunction with a specific genetic weakness. (So, for (an unlikely, because almost certainly already investigated) example, it might be that if your blood CO₂ rises above a certain level while you’re below the age of around 6, it will cause a developmental change which is irreversible — but the specific level required is determined by your genetics, which means certain people have a genetic predisposition to autism, but that enough people who have the “right” genetics will not receive the trigger as well so that simple genetic screening would not immediately reveal the connection.)

    I forget whether it was Oliver Sacks or Harold Klawans (probably the former) who mentioned that there was an apparent connection between exposure to molybdenum and Parkinson’s disease. People in professions with high exposure to molybdenum (mining and a particular type of welding) who survived into their 60s tended to develop Parkinson’s disease at a much higher rate than the population at large. (I have not checked to see whether this is still believed to be true, so this may simply have been a matter of a few specific populations gumming up the statistics.) But not everyone who worked in those professions and lived that long developed the disease, so the causation was not simply “if you inhale a bunch of molybdenum, you will get Parkinson’s”, and the most likely culprit for differentiation is of course genetics.

    (It’s sort of like the old semi-joke “death is actually a preventable condition — it’s caused by exposure to oxygen”.)

  48. Jessie Harban says

    @Giliell, 44:

    Well, it is. Sure, both definitions are a social consensus, but they have different words and definitions for a reason. That’S not “linguistic nitpicking”, that’s getting clear what we’re talking about and what you mean when you use certain words.

    In this context, the difference is irrelevant; we’re not doctors and we’re not discussing the finer details of medicine. I call it a disease. Most of the time, that’s close enough.

    If they show no symptoms of autism, how have they been diagnosed?

    Based on symptoms they showed in the past.

    The condition is fluid; my own symptoms went into remission for years, and during that time no one would have diagnosed me as anything but neurotypical.

    1. That’s not dismissal, that’s trying to get to the biological basis.

    Very well.

    I’ve seen far too many people argue that autism isn’t an impairment; it’s just a difference so I get overly jumpy when people describe it as a “difference in information processing.”

    2. You’re again trying to define autism via things that are not autism.

    Technically that’s an analogy, not a definition.

    Maybe read the part you quoted. I plainly stated my “selection bias” saying that this only applies to one subgroup.

    Maybe I misread it then?

    That non-disabled autistic people find discrimination more bothersome than disability seems like a fairly trivial point to make.

    I’m afraid this is a very long and philosophical debate about the nature of the “I” in Western philosophy and self concept. Short form: it has a lot to do with self-perception.

    I wasn’t planning to get that deep. Originally, I just noted that there’s a major distinction between people who view autism as something they are vs. something they have. I suspect that people have a tendency to view themselves at their best as their “real” self, so it’s fitting that someone who used to pass for neurotypical would point to Effectively Neurotypical Them and say “that’s the real me” while people who’ve always had roughly the same kind of autism treat it as part of them.

    Again with the words. Prenatal screening usually refers to screening for things in an existing pregnancy, not things like pre-implantation diagnostics. But if we’re talking about actual prenatal screening: No, I don’t oppose it, but I am also aware of the philosophical and ethical issues it raises. What about screening for gay fetuses? Trans fetuses? What about sex selective abortions? While I will always come down on the side of “let this person have an abortion”, I also think that the debates an discourses are very important.

    Prevention is prevention; prenatal screening vs. pre-implantation diagnostics is kind of irrelevant to the ethical issues involved.

    I’m not sure this is the best place to discuss said issues, though.

    That said, I don’t think it’s reasonable to compare being gay or trans to being autistic; the first two never directly hurt anybody while the latter often does.

    Because I live in the real world. In the real world the solution is abortion. It’s what already happens with many of the other medical conditions that are detected via prenatal screening. Maybe this all hangs on you saying “prenatal” when you don’t mean that.
    And I put “autism” in scare quotes to indicate that it’s not a monolithic uniform thing.

    You put autism in scare quotes to indicate that it’s not a monolithic uniform thing, but you assume that any prenatal test will only ever detect it as a monolithic uniform thing.

    The whole point is that there probably won’t be a test that screens for “autism” under the 2017 definition; if we know enough about autism to develop a test, we’ll probably know enough that “autism” as we currently know it will be divided into multiple categories.

    If a prenatal test reveals what we’d currently call “severe autism, will probably never have quality life,” then I don’t think there are any ethical issues to discuss if the person carrying that pregnancy decides to terminate it. If anything, there are more ethical issues to discuss if they carry the pregnancy to term.

    Who’s dismissing people now?

    ???

    @Charly, 46:

    I wanted to get diagnosed whether I have Aspergers or not. To find out how and where such diagnosis is possible in CZ is not easy, since most such services are meant for children.

    Ugh. Even halfway across the planet, the experience is the same. Health systems presume autism is a disease children get; navigating the system as an adult is tricky and as an autistic adult moreso.

    Assuming that I have mild Aspergers syndrome, I have to say that it definitively is a part of who I am.

    Out of curiosity, have you ever been any other way? That is, was there a time when you had different symptoms or no symptoms? I’ve speculated that the are/have distinction may correlate with changes in condition over time.

    My intuitive insight into statistics might be a result, as well as my above-average capacity to remember things and having a broad spectrum of knowledge of natural sciences.

    I miss having those things. :(

    Well, except memory. I’ve still got a good memory in some respects. Being a writer who is unable to write has forced me to get very good at remembering things I definitely will write once I’m cured.

    Me having very good fine motorics and being good at fickle manual work does not fit the picture of autistic spectrum disorders, but nobody fits the picture for this diagnosis perfectly, otherwise it would not be that difficult to diagnose.

    There is no single diagnosis criterion. It’s not a simple picture anybody can be matched to; that’s why it took me so long to be diagnosed.

    I’m still suspicious that I might have to come back someday and post: “Actually, I’m not autistic after all, I have [other condition].” It seems unlikely, but it’s technically possible.

    However I would gladly give half of my brain to be a different person, if possible. A person who is able to pick up a phone and solve a simple issue in five minutes, instead of having to delegate such tasks or procrastinate them for hours on end

    Same here, although I wouldn’t describe it as becoming a different person; just a very different me.

    because talking over phone feels unpleasant and awkward in a way that cannot be explained.

    You may not be able to explain it but I’m pretty sure I know exactly what you’re talking about.

    It feels a little bit like you’re walking against the current of a river, where you may technically know how to do it but it’s still mechanically difficult to actually do it, and anything you say feels like absolute humiliation for transgressing social conventions and…

    Oh fuck I can’t explain it either.

    I HAD TO MAKE LOTS OF PHONE CALLS TODAY I KNOW THE FEELING DAMMIT.

    A person who does not stay in a shitty job for too long, because even a small unknown change is terrifying and is to be avoided.

    Oh hell do I know that feeling.

    Although the prospect of switching jobs (or taking a new one) feels like a MASSIVE change to me. The small changes that I find scary (but not too scary to overcome with a full spoon drawer) are more along the lines of “ask the deli for a thick slice of salami rather than thin ones because I’m gonna try making a simple antipasto” or “try making a simple antipasto for the first time.”

    A person who is able to pick up social cues and therefore recognise when to speak and when to shut up intuitively, and not only in my forties after years of painstaking learning by trial-awkward.

    I had to learn social cues through trial-and-awkward (which is an excellent phrase) but although it was a bit slow, I did manage to do it.

    But now, tracking social cues takes active exertion, so if I don’t have a full spoon drawer I start losing that information.

    A person who is able to go to a party with dearly beloved friends and actually really enjoy the occasion.

    I miss parties. I used to enjoy them so much.

    A person who does not get thrown off the rails by trivial changes to the shopping plan. Etc. etc.

    :(

    All the feels.

    Actually, I’ve gotten quite good at adapting to changes, but there’s an odd disconnect between adapting and accepting. If I’m planning to buy antipasto and the store doesn’t have any, I can quickly switch over to a plan to make antipasto but only if I can explain the change of plans to someone first— and I’ll be thrown completely off the rails if they make a brand-new suggestion, like “why not buy potato salad?”

    So I, Jessie Harban, although I am a mere Schrödingers (mild) autist, I understand what you mean.

    Mild compared to me, but severe compared to someone.

    @Brony, Social Justice Cenobite, 47:

    Why do you feel the need to emphasize autism as a disease?

    Because I despise it and “disorder” sounds like a weasel word.

    The context here is people that act like Autism as a proper noun is a disease.

    I’m not following. What’s Autism the proper noun?

    You should be able to express your experience of autism but not at the expense of others.

    How exactly does expressing my experience come at anyone else’s expense?

    Have you read any articles about people with autism that have figured out how to use it?

    How to use what?

    If society pathologizes things intrinsic to us as a group that we will have a problem. It’s been tried with handedness, sexual orientation and more. It does not work.

    I don’t think pathologizing handedness or sexual orientation is in any way comparable to pathologizing the inability to do anything requiring mental processing of multiple steps, or complete life-ruining mental fatigue, or severe anxiety in response to minor changes.

    @The Vicar, 48:

    And yet even the stupidest of the anti-vaxxers is really talking about prevention and not cure. They may be utterly wrong about causation and oftentimes unpleasantly eugenics-ish, but mostly they want to stop more autism from happening.

    Preventing more autism from happening is a nobel cause, but I don’t trust anti-vaxxers to even support it at all, let alone support it properly.

    Or in other words, developing a safe and effective way to prevent autism without trampling people’s rights is a good thing. Anti-vaxxers don’t actually want it and would never try to do it.

    Genetic? Probably, but not necessarily — or, at least, not the way you mean.

    The way I mean is that there’s probably a set of genes or alleles that create a predisposition to autism, making you more likely to have it.

    Although another possibility is that there can be a strong genetic tendency towards random errors in brain development, where people who have it won’t be neurotypical but they’ll all have different mental illnesses.

    The causation is murky enough that autism could yet turn out to be caused by a semi-common event, but only in conjunction with a specific genetic weakness.

    Still not reproducing.

    Even if you could guarantee me a 95% chance that my offspring wouldn’t end up like me, I’m still not willing to roll the dice on a 5% chance of severely debilitating another person.

  49. Beatrice, an amateur cynic looking for a happy thought says

    I notice a parallel with conversations about Down syndrome , which I’m almost sure we’ve had here before.

    I can’t claim any diagnosis for myself, but I recognize myself in a lot of listed symptoms of disorders like anxiety and/or autism. No matter whether I could be diagnosed by one or not, I know that for me to be able to function in the world the same as someone I would consider “normal”, people wouldn’t just have to be accommodating – they would have to be psychic and have the patience of a proverbial saint. I’m not even close to severe disability or even disability at all, but I would still make a brain swap in a second if I could.
    For that reason I have a lot of sympathy for Jessie. Giliell (and others), can you see a similarity between your comments and those from people who feel their loved ones with Down syndrome are being attacked and their lives and personalities devalued when people discuss how debilitating Down syndrome can be? Both autism and Down syndrome are on a wide spectrum, they are not horrible and debilitating for everyone, but they are also not just a personality trait. For some people, the world just being accommodating isn’t enough, so it gets really easy to minimize what people like Jessie or those with more debilitating autism suffer when Giliell or Brony oppose “[society] pathologizes things intrinsic to us as a group” (to quote Brony). Maybe it’s not the best comparison, but it’s the difference between being sad and being depressed, or being prone to pedantry and having compulsion to say or do things a certain way.

    (note: I won’t be able to respond until late evening)

  50. says

    Charly

    However I would gladly give half of my brain to be a different person, if possible. A person who is able to pick up a phone and solve a simple issue in five minutes, instead of having to delegate such tasks or procrastinate them for hours on end, because talking over phone feels unpleasant and awkward in a way that cannot be explained.

    Remember when I said that in many cases Autism is a stronger version of traits that are present in neurotypical people as well? Quick and easy written communication is such a blessing for me. The worst thing was when my uni’s counselling service insisted on phoning them. I’ve also been broken into pretty small pieces by years of abuse, so there’s that…

    Jessie Harban

    In this context, the difference is irrelevant; we’re not doctors and we’re not discussing the finer details of medicine. I call it a disease. Most of the time, that’s close enough.

    Says you. You cannot dictate that we use established terms the way you like because you think it’s irrelevant.

    Prevention is prevention; prenatal screening vs. pre-implantation diagnostics is kind of irrelevant to the ethical issues involved.

    And at this point I’m out. You’re sloppy with words and then declare they don’t matter, effectively shutting down the conversation.

    beatrice
    I don’t deny and never have that autism is a broad spectrum and that it affects people differently. Hell, even for two people on the same “level” so to speak it can be a very big difference. But yes, I do take it personal when somebody describes my kid as something severely broken and sick, in need of fixing because she is on the spectrum.
    I think this discussion shows again that we need a nuanced approach instead of just talking about “autism”.

  51. says

    @ Jessie Harban #49

    Out of curiosity, have you ever been any other way?

    Not that I know of. But it did not manifest untill the end of school, maybe because from kindergarten forward my social surroundings changed only gradually. I have been considered an oddball, but not extremely so (but enough to get bullied). When I went to highschool first hit came, and even bigger one when I went to Uni. I almost did not speak with anyone the first year in the uni.
    In a known social environment I can pass for mostly normal and maybe only slightly odd. But it takes me circa a year to get accustomed to new social environment, whether it was uni, or new job. During that year people think I am unfriendly, cold and distant. And I am not able to initiate or keep conversation with anyone. What terrifies me about changing job is not the demands of new job or financial uncertainty, but the sudden disruption of my social surrounding and my daily routine.
    What definitively worsened the issue was puberty, because I crave a close relationship with someone, but I was always completely unable to form one.

    I miss parties. I used to enjoy them so much.

    I enjoyed and I still enjoy social gatherings up to around 10 people, all of whom I have to know very personally. A christmass party by my emploeyer, where 150 people whom I mostly know only passngly gather? No thank you, I will pass. I would have to get drunk to endure it and I would never enjoy it.
    To ease my way into new social surroundings I need someone familiar, someone I already know and feel close to. I would never be able to travel to USA and work there for a few months if my close friend was not traveling with me.

    and I’ll be thrown completely off the rails if they make a brand-new suggestion

    I am thrown off the rails when on the way home I get the info “we need to stop at X to buy Y”, or get asked to buy something that is not written on the shopping list. If I get this info in advance, I am fine, but when I am set on a specific goal I have difficulty to keep cool when faced with changes introduced by other people. I am mostly fine when a natural disaster strucks. I am very good at solving problems or helping in emergency. When someone cuts their hand and bleeds profusedly, i will keep cool head and help (tested). When a device gives up and there is a need to urgently improvise and come up with creative solution for the problem, I am your man (also tested). But call me that you are in town and wish to visit me and I will not be happy at all, no matter what (sadly, tested). That I need to know in advance, that is something I need to prepare for.
    Oh and one sureproof way to throw me off is a compliment or praise. First occurence of this that I know of is about 5 years old. I had to actually learn how to react in such situations and I have to actively think about what to do next. If ever a woman were interested in me, I have no idea what she would have to do not to scare me witless.
    @Beatrice #50
    I am glad to see you.
    I notice a parallel with conversations about Down syndrome , which I’m almost sure we’ve had here before.
    I am even more reminded of very recent debate where one commenter insisted that being deaf is not a disability and everything would be dandy if only society made more to accomodate disabled people. Evidence and testimonials from people whose disability actually disables were sumarilly dismissed ala broken record.

    …I know that for me to be able to function in the world the same as someone I would consider “normal”, people wouldn’t just have to be accommodating – they would have to be psychic…

    Exactly.
    @Giliell #52

    Remember when I said that in many cases Autism is a stronger version of traits that are present in neurotypical people as well?

    Yup. That is the biggest problem with autism.
    I think that autism is about as usefull word to us as the word “stone” is to a discworld dwarf. That is, not much. In medical parlor it is a very generic term like “cancer”, and it tells you about as much about an individual person as “tall” or “smart”.

  52. says

    Bugger. It is a pain in the fundament, when preview does not function.

    @ Jessie Harban #49

    Out of curiosity, have you ever been any other way?

    Not that I know of. But it did not manifest untill the end of school, maybe because from kindergarten forward my social surroundings changed only gradually. I have been considered an oddball, but not extremely so (but enough to get bullied). When I went to highschool first hit came, and even bigger one when I went to Uni. I almost did not speak with anyone the first year in the uni.
    In a known social environment I can pass for mostly normal and maybe only slightly odd. But it takes me circa a year to get accustomed to new social environment, whether it was uni, or new job. During that year people think I am unfriendly, cold and distant. And I am not able to initiate or keep conversation with anyone. What terrifies me about changing job is not the demands of new job or financial uncertainty, but the sudden disruption of my social surrounding and my daily routine.
    What definitively worsened the issue was puberty, because I crave a close relationship with someone, but I was always completely unable to form one.

    I miss parties. I used to enjoy them so much.

    I enjoyed and I still enjoy social gatherings up to around 10 people, all of whom I have to know very personally. A christmass party by my emploeyer, where 150 people whom I mostly know only passngly gather? No thank you, I will pass. I would have to get drunk to endure it and I would never enjoy it.
    To ease my way into new social surroundings I need someone familiar, someone I already know and feel close to. I would never be able to travel to USA and work there for a few months if my close friend was not traveling with me.

    and I’ll be thrown completely off the rails if they make a brand-new suggestion

    I am thrown off the rails when on the way home I get the info “we need to stop at X to buy Y”, or get asked to buy something that is not written on the shopping list. If I get this info in advance, I am fine, but when I am set on a specific goal I have difficulty to keep cool when faced with changes introduced by other people. I am mostly fine when a natural disaster strucks. I am very good at solving problems or helping in emergency. When someone cuts their hand and bleeds profusedly, i will keep cool head and help (tested). When a device gives up and there is a need to urgently improvise and come up with creative solution for the problem, I am your man (also tested). But call me that you are in town and wish to visit me and I will not be happy at all, no matter what (sadly, tested). That I need to know in advance, that is something I need to prepare for.
    Oh and one sureproof way to throw me off is a compliment or praise. First occurence of this that I know of is about 5 years old. I had to actually learn how to react in such situations and I have to actively think about what to do next. If ever a woman were interested in me, I have no idea what she would have to do not to scare me witless.

    @Beatrice #50
    I am glad to see you.

    I notice a parallel with conversations about Down syndrome , which I’m almost sure we’ve had here before.

    I am even more reminded of very recent debate where one commenter insisted that being deaf is not a disability and everything would be dandy if only society made more to accomodate disabled people. Evidence and testimonials from people whose disability actually disables were sumarilly dismissed ala broken record.

    …I know that for me to be able to function in the world the same as someone I would consider “normal”, people wouldn’t just have to be accommodating – they would have to be psychic…

    Exactly.

    @Giliell #52

    Remember when I said that in many cases Autism is a stronger version of traits that are present in neurotypical people as well?

    Yup. That is the biggest problem with autism.
    I think that autism is about as usefull word to us as the word “stone” is to a discworld dwarf. That is, not much. In medical parlor it is a very generic term like “cancer”, and it tells you about as much about an individual person as “tall” or “smart”.

  53. Jessie Harban says

    @Giliell, 52:

    And at this point I’m out. You’re sloppy with words and then declare they don’t matter, effectively shutting down the conversation.

    If you think the fine details of how a screening process works are relevant to the ethical issues of the screening process, then why? If you take deliberate action to avoid creating someone with condition X, what does it matter whether this action is taken with the aid of prenatal screening, pre-implantation diagnostics, or blunt tools like refusing to reproduce?

    What is the ethical difference between:

    1. Knowing I have heritable Condition X, I will refuse to reproduce,

    2. Knowing I have heritable Condition X, I will reproduce only with gametes that are confirmed negative for X, and

    3. Knowing my fetus has Condition X, I will terminate the pregnancy?

    But yes, I do take it personal when somebody describes my kid as something severely broken and sick, in need of fixing because she is on the spectrum.

    Speaking as someone who is severely broken and sick and in need of fixing because they’re on the spectrum, how do you think it makes me feel that you take it as a personal offense to suggest your kid might be associated with me? Am I so horribly defective and tainted that you’re offended by the idea of your kid sharing a spectrum with me?

    @Charly, 53/54:

    In a known social environment I can pass for mostly normal and maybe only slightly odd. But it takes me circa a year to get accustomed to new social environment, whether it was uni, or new job.

    I know the feeling.

    In my case, my symptoms went into remission for years so I was able to make friends, build a social circle, and become involved with communities. Since the Return of Autism, I’ve been pretty much completely unable to do any of those things, so I’ve basically got this gradually-dwindling pile of “grandfathered” social contacts that I made before disability and are known and therefore comfortable.

    What definitively worsened the issue was puberty, because I crave a close relationship with someone, but I was always completely unable to form one.

    Being asexual is the one saving grace that made my condition minimally bearable for this long. If I’d been stuck with a need for a significant other, I’d be beyond miserable.

    I enjoyed and I still enjoy social gatherings up to around 10 people, all of whom I have to know very personally.

    Same here.

    A christmass party by my emploeyer, where 150 people whom I mostly know only passngly gather? No thank you, I will pass. I would have to get drunk to endure it and I would never enjoy it.

    I used to enjoy that, as long as I was close friends with at least a handful of people there, but nowadays? I could endure the social contact (and even enjoy it) but there’d be hosts of sensory issues involved and the exertion of it would require a full spoon drawer. Given how limited my spoon supply is, I think of nearly everything in terms of opportunity costs— yes, I would enjoy that party but is it worth not being able to cook, shower, or leave the house for a week afterwards because I’m still in hold-all-my-calls cooldown mode?

    If I get this info in advance, I am fine, but when I am set on a specific goal I have difficulty to keep cool when faced with changes introduced by other people. I am mostly fine when a natural disaster strucks. I am very good at solving problems or helping in emergency. When someone cuts their hand and bleeds profusedly, i will keep cool head and help (tested). When a device gives up and there is a need to urgently improvise and come up with creative solution for the problem, I am your man (also tested). But call me that you are in town and wish to visit me and I will not be happy at all, no matter what (sadly, tested). That I need to know in advance, that is something I need to prepare for.

    In my case, the exact specifics of what I can roll with and what disrupts everything are oddly particular. It actually took me some time to learn through trial and error exactly which sorts of disruptions were damaging and which were minor, and even now I’m not absolutely certain.

    Just for example, I know that anything I’m doing right now is a “task.” Some tasks have a definite end (for example, the task of writing this post will end when I post it; the task of reading FTB will end when all the tabs are closed). Some tasks are indefinite, but have specific stopping points (for example, I could play 2048 indefinitely, but the end of each game is a designated stopping point). Switching tasks at any point other than the end of the current task or at a stopping point within it is incredibly disruptive; it takes considerable effort to do it even if another person helps me. However, the distribution of stopping points isn’t always intuitive; for example, if I’m reading a long book, then “the end of page 39” may not be a stopping point, while “the end of page 42” is. And on occasion, a task will simply break; midway through, I’ll suddenly feel that the task has ended and it’s time to do something else, in which case it takes active effort to return to the one I was working on.

    Worse yet, the definition of a “task” may be rather fuzzy; ideally, the task of reading FTB is over when all the tabs are closed, but if people are responding to my comments then I might discover that the “task” only ends when the debate has finished or when there are no comments to respond to or worse, the task may be reclassified as “indefinite” because anybody could reply and need a reply in turn. Since breaking a task in the middle requires spoons and I don’t always have enough, it results in a terrible brain-stuck loop that I just can’t break free from.

    Back when my disability wasn’t so bad, I was able to exploit the task-stickiness to get things done; if I could work up the spoons to start writing, I would have a guarantee that I’d keep writing until the “task” was done. Unfortunately, as my condition worsened, that workaround became impossible (although it’s a little hard to describe why).

    @Nobody in particular:

    Last Friday, I had to make many phone calls (but I actually made two). That was enough to get through to someone and be told that even if I did get benefits through this disability program, those benefits wouldn’t pay for treatment, ever, under any circumstances. Treatment is covered by a different program, with a completely separate application process. Mind you, this is maybe the third time I’ve completed (or got at least halfway through) the application process for one office only for them to pass the buck and tell me I needed to apply with a completely different office— and each application takes months of sustained effort. I’ve been at this for about a year and a half and I see no sign that I’m any closer to receiving treatment than when I started.

    I’ll keep fighting for another six months. If I still can’t get treatment after that, I’m giving up entirely.

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