Aspificating snobbery over the DSM all over again

Standard

I have seen a lot of “aspies” whining lately about the proposed changes in the DSM. Not productive critique of the new criteria, the medicalization of autistic lives, or the fact that the things most autistic people have truly in common have been left out of the criteria while peripheral things nonautistic people want to fix are spotlighted. No, nothing that useful. Just out and out whining.

“I don’t want to be associated with that other kind of autistic people,” goes the standard whine line. “You know… Those Ones.” The crazy drooling retarded low functioning diaper wearing nonverbal ones who can’t take care of themselves and need to be on welfare. Which one of those or many other pejorative categories depends on the individual variation in the snobbery. (What is it? Snob not otherwise specified? Not like those other snobs.)

I’ve written a lot of posts on this blog about aspification and snobbery of this very sort. It’s been sitting around in the autistic community for a long time. And now it’s coming out of the woodwork. I might link some of those posts once I get to my main computer, just for a refresher. But this is some of the most blatantly hateful and snobbish stuff I’ve seen in a while.

What I wrote to someone earlier:

And some of us might rightly find it insulting to be referred to as the ones that others had to be oh-so-tragically “lumped in with” (you know, “crazy”, “low functioning”, “retarded”, “autistic”, or other categories that people seem to do their darndest to distance themselves from).  Like we have disability cooties or something from the way some people behave, and like having the medical people put us in the same category as our “betters” is such a terrible threat (and like it changes anything about who any of us really are).

And it’s true. It’s insulting. It’s insulting to me. It’s insulting to anyone who bears the characteristics that any individual aspified snob might throw at us. And it ought to be insulting to all of those who don’t have disability cooties At the moment either. Anyone with any decency should be appalled that people are upset, not over anything that is really going to harm autistic people as a whole, but at the idea of being thrown in with the rest of us.

It’s especially interesting to see that one of the people most widely quoted as divorcing himself from people who wear adult diapers (like me) is someone who has never seemed to hesitate to use my writing (both with and without permission) but apparently can’t stand the thought of sharing a label with people whose underwear differs from his in certain key aspects, or with people who self-injure. I guess nobody had better tell Carley that lots of people diagnosed with Asperger’s are incontinent and/or have severe self-injury. He might want to create a divide within Asperger’s to wall himself off from such people in.

Funny but I have never minded as a person who has had both such characteristics, sharing an autism label with people without those characteristics. Anyone who delves deep enough into either science or personal experience of autistic people will find that the characteristics related to perception and cognition are the ties that bind us together, regardless of the more superficial characteristics that people divide us up by. Of the autistic people who seem to have the most similar experiences on those deep deep levels to mine, include people diagnosed as high or low functioning, Asperger and autism and PDD-NOS, with IQ scores from 20 to 160. The same can be said of those who most differ from me. The reason is the diagnostic categories are neither deep nor penetrating nor accurate. They divide those with the most in common and connect those with barely anything in common in such haphazard ways it should be obvious that they are falsity of the worst kind. And the same goes when people pick these singular outward traits and hold them up as the ultimate dividing line. Like many autistics I have been saying this since I first got a good hard look at what the categories meant. And surely the deep down bones-level traits are those that matter.

People often get the idea from the media that I prefer to be called low functioning. I don’t. I don’t think that such labels can ever capture the intricate and beautiful complexity that exists within all of us. Nobody should be reduced to such a term even when they do the harm to themself by self-applying such terms. But as a person who has received that label from several doctors without even knowing it, I will stand up and resist the way it is used, and will tell people that when they speak of what they want to do to people with that label then they mean me since I have worn that label. (It is not for them to say they make an exception for me, because when people with that label are mistreated I am mistreated because the label is forced upon me whether some random guy likes it or not. It is forced on me by doctors and by people who yell out of car windows alike and is not so easily repelled.). Such things do not fit into soundbites.

Anyway just let it be known that I totally and completely divorce myself from any person or community who shuns people like me or like any other random autistic person who doesn’t meet the standards of aspified perfection. This is not the way to celebrate human diversity and it is not the way to gain status for yourselves by throwing the rest of us to the wolves. We may share an official diagnostic category (in places where the DSM is recognized), people may finally be forced to acknowledge the sameness that many of us have believed in all along, but (thank God) we don’t all share such a terribly harmful set of ethics. And thankfully it’s okay to reject crappy ethics even if it’s not okay to reject people for having unsuitably proper characteristics.   

(“Better? Fuck better. We don’t exist for the beautiful people of the world, Ted. We’re there for the oddball. The rebel. The outcast. The geek.” A line from the movie “The Specials” that just came to mind. As it always does when I am confronted with outrageous elitism.)

Anyway as much as this is a rant against snobbery it is also a call to remember what is important. Look to that beautiful shifting central set of attributes that make us alike and different. Stop using the periphery to divide us. And just as we remember the central attributes that matter, we need to look to the central values that bring us together to assert that we are of equal value no matter how we seem to differ, that we all matter and are valuable, in a deep down way not a surface feelgood way. Because we need those roots to sustain us while other people are fleeing and pointing fingers at those they don’t want to be lumped in with. And because it’s too easy to get blown away by the ethical storms that surround situations like these.

There is so much beauty in those deep levels of who we are, and it’s so easy to forget it when people are going on at great length about how inappropriate it is to see our connections when we could be dividing on the basis of things as surface level as the fabric of our underwear or our IQ points. Yes those things can make a huge difference in how we are treated and what lives we lead, but isn’t that fact something we are trying to change, rather than intensify the oppression?

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

42 responses »

  1. As someone with an Aspie dx, I’m offended. NOT by what you have said here–your post is wonderful and exactly the type of thing that needs to be said (and heard!)

    What offends me is those who keep insisting that they aren’t anything like “those people”. By virtue of being human, we are all “those people”. “They” are who we are. Yes, we have differences. All of us do, because all humans do. But common needs– and the common condition of having hopes and dreams– connect us all.

    And for what it’s worth, I am *honored* to be “lumped in” with “those people”.

  2. I have to agree with Littlewolf, to me it’s an honor to be lumped in with “those people”

    and this aspie snobbery is why I stopped going to Aspies for Freedom. Or rather I just lurk…

    I think I said this on Ontd_politics about the DSM-V
    “And personally I identify as autistic, so it makes no difference to me really, Asperger DX or not. I just think this separation is only causing something like a superiority complex among aspies who hate being associated with anyone that is remotely LFA which personally pisses me off ”

    I think we’re on the same page

  3. Yeah, I’ve been using autism to mean all of us for a very long time too. To me the change in criteria upsets me because in some respects it is stricter than the old one (a person must now be judged to have all three social criteria, when the social criteria are little but the products of two mismatched neurologies meeting, and not inherent to us at all, meanwhile our communication difficulties now mean barely anything), and because it judges how autistic you are by superficial traits. It amazes me that they claim the proposed criteria are anything like scientific. But in calling all of us autistic, they are just doing what autistic people have been doing a really long time after recognizing our commonalities.

  4. Ugh yeah I know the kind of thing you mean, though these days I tend to stay away from most places where those sorts of exclusive/snobbish attitudes are present.

    I know a lot of it is probably internalized ableism/stigma, and that lots of autistic people (regardless of diagnostic type or status) have been taught practically since birth to be ashamed of any traits that make them even remotely like “those [undesirable] people”, but there is a point at which people really need to own up to that and take responsibility for the way that kind of thing perpetuates stigma. Not just try and hand-wave away any connection to folks more stigmatized than themselves.

    Also, I know exactly what you mean about the deep-connection stuff…of all the autistic people I’ve happened to encounter (offline or online) I have found zero correlation between someone’s similarity to me and their “score” on any Standard Measures of Success and Perceived Funtioning-Ness scale. I.e., I know people with Asperger’s diagnoses who are very unlike me on deeper levels, even if our current speech abilities are similar, and people who are either non or minimally-verbal who I relate to hugely, just in terms of how they/I are experiencing and processing incoming information.

    So yeah I guess what I am saying is, while I can see a lot of places to critique the newly proposed DSM criteria (for one thing it seems to just be continuing the whole “too much speculation/theory, not enough facts” trend that autism as a concept has struggled with for generations) I am utterly repulsed by the “oh but don’t lump US in with THOSE people” attitude some are exhibiting.

  5. I agree entirely. I used to think there was a clear distinction, and that Asperger’s and “high-functioning” autism were “differences, not disabilities”, but I’ve come to realize that that attitude was profoundly ableist, and hurt both those I was distancing myself from and myself, by denying the realities of my own disabilities.

  6. under the current “science” i would probably be Asperger while dh should probably be HFA. the only thing this is useful for (A) to say that he faces more barriers because the world is more dys-adapted to people who had language differences all their life and (B) maybe (if the shrink wrote the right magic word) he can get help from some organizations that don’t help “people with aspergers” and only help “people with autism”. i was told that on the phone by a local organization (about a week before the news about the DSM).

    who has a closer connection with reality? he has. who is the more messed-up of the two of us? in many ways, i am. is either of us messed-up because of autism? no, it’s because of life stuff we’ve been through and and how we have dealt and mis-dealt with it. btw i have self-injured a lot more frequently than he has, and have a slight problem of bladder leakage.

    i’ve used a different psuedonym than i usually do on your blog because i’m still ashamed of how messed-up i am. but i’m sure as h*ll not ashamed to be autistic.

  7. I have to wonder, though, what will happen to my actual dx if the proposed changes become reality. Will my AS dx automatically become an autism/ASD dx, or is that up to my particular pdoc? The reason I am wondering is that when the pdoc dx’ed me, she said “You’re clearly not autistic”. (Yeah, right…)

    Will she just decide I’m ‘normal’ now and remove the dx? The only reason I am concerned is that if I don’t have a dx, I may not be eligible for the help I get from the disabled students’ office at school. *sighs* Why can’t people just look at the needs I have and find ways to accommodate those rather than being hung up on whether or not an ‘expert’ decides I need that help?

    BTW, I may not be understanding something correctly here about the way the DSM and updating criteria work, and corrections/pointing out inaccuracies in my thinking would be appreciated, if needed.

  8. This whole flap is pretty ridiculous, I think. I’d think that this would bring everyone on the Autistic spectrum closer together, not drive us apart (I remember back in ’02 when someone on the LiveJournal asperger community basically said to me, if you’re AS, you’re autistic too, and one of us as well – it was part of my acceptance and beginning to feel like I’d finally found a community of people like me and who accepted me as I was, as I did the). Of course even back then there were those who would say As was not autism (many of those were dx’d autism, not AS, in fact) and there was disagreement, but it seemed that we had finally all decided to stand together as advocates for each other, if nothing else.

    Now all of this infighting is starting to hurt my heart. We really should stand together! Not to mention the fact that this is going to probably add a whole lot of fuel to the anti-neurodiversity people’s fire… I’ve not read their blogs on this, but I can well imagine what they might be saying. And the point about “aspie snobbery” is a good one. I am also reminded of how, in institutions like the Ladd Center (and others!) the residents there who were higher functioning would proudly announce to all and sundry, “I’m a high grade!” and look down upon the other inmates who, in their estimation, were not as highly functioning as they were, sometimes being abusive to them as well – not good and not nice.

    Instead of this driving us apart, I’d much rather see us come together and stand as one. I know I already get angry when I see someone saying a nonverbal autistic person has nothing in common with me, or that because s/he is obviously lower functioning than I, that’s why s/he needs ABA (and I don’t, presumably – I get this sometimes when I talk to parents of kids with autism and explain why I feel so strongly against ABA). This should be an opportunity for us to all work more closely together and appreciate the similarities and differences we share, not argue that they make some of us… what, exactly? Better? No, no one is better than anyone else.

    Was it Ben Franklin who said “We must all hang together or we will surely fall apart”? Google has the actual quote:

    “When Benjamin Franklin signed the Declaration of Independence, effectively putting his life and the lives of his loved ones on the line by standing up for freedom, he said, “We must all hang together, or assuredly we shall all hang separately.””

    Now is the time for us to come together to work toward our common goals – not fight amongst ourselves. Frankly, we know better. Or really, really should.

  9. I sometimes wonder if the asp-holes you mention here have actually compared the DX criteria for Asperger’s and autism, and realized that every person with the former diagnosis also qualifies as having the latter diagnosis; in people with no speech delay or regression and no signs of what is labeled “intellectual disability,” which diagnosis they get largely depends on the whims of the person doing the diagnosing. And most teens and adults being DX-ed for the first time don’t get an autism diagnosis, they get an Asperger diagnosis, regardless of what their “functioning” is like.

    There was probably a purpose for the Asperger diagnosis to have been placed on the books when it did — to get people used to the idea that there were autistic people who could talk and didn’t strike people who knew nothing about autism as “obviously autistic.” I might well have been one of those people; when I was DX-ed, I knew of none of this. I’ve gotten quite the crash course in 2 years and 4 months.

    But now I know that there are probably as many different autism presentations as there are autistic people. I don’t need a diaper, but at least once a day, I do have to go back to the bathroom five minutes after I came out because I thought I got everything out and it turned out I didn’t. That may not sound like something that characterizes “low functioning” to a lot of people, but good goddess did I ever get written up and chewed out and given the stink-eye for that, when I worked outside my home.

  10. Yesterday several facebook friends linked to Bev’s great post about that and there were huge discussion threads about it, and I noticed that even the aspies who reject the snobbery can be hypocritical and ignorant, I can’t count how often I read “us” and “them” “they” etc, “them” being -like you said- autistics with characteristics perceived as “low-functioning”. It was really alienating to be talked about like that. It was like being turned into a non-existent person, because apparently “those” autistics can’t possibly be able to use facebook.

  11. I’d always felt more connection with even the ‘lowest-functioning’ autistics than with NTs when I discovered the autism rights movement, but what made me truly realize that the whole idea of functioning levels was bunk was when I noticed that there were autistics– not aspies, but actually diagnosed autistic with speech delay and all– who had the spatial perception and processing speed to drive a car safely, and who could easily comprehend speech, particularly on the phone, without ever having to strain. Whereas I, actually diagnosed as Asperger’s, am practically hard-of-hearing when it comes to phone conversations and still don’t feel even remotely safe behind the wheel of a car.

    I’ve had a s similar experience to what Anne mentions. There are Aspies I’ve met who I really don’t grok at all, and there are Kanner’s autistics that I’ve met who make perfect sense to me when it comes to processing info and such.

    Like Noranne, constantly seeing this sort of better-than-thou attitude quickly turned me off the Aspies for Freedom forums. And like the first two commenters, I’m *honored* to be lumped in.

  12. Just a note that Kanner autistic, if you look at the actual verifiable descriptions of Kanner’s patients rather than the stuff Kanner’s brain made up to interpret their actions, is almost totally indistinguishable from the people who today get dxed with AS. They included people with no speech delay, people with IQ scores into the 140-150 range (even one of the two nonspeaking people had an IQ of 90ish), people who went to college, etc. Kanner really misinterpreted a lot when he wrote the criteria, which many of them in reality would not meet if you interpreted their actions in a less biased manner. It was stunning to read his paper closely and find all that out after hearing for years otherwise. Kanner autism used to even be a term used in place of high functioning, and people lamented that people who today would be called low functioning were broadening the autistic spectrum in the “lower” direction. Some people even refused to diagnose autism in someone with a low IQ or language “regression”, preferring to diagnose childhood schizophrenia (Frances Tustin’s book gets into that, from the 1970s). After researching all that it angers me when people who should know better (professionals) act like the modern biases were always in effect regarding autism, rather than the biases shifting different directions over time. Not that the old biases were better but they were sure different than modern ones would have people believe.

  13. @ballastexistenz: Ah, yeah, I remember reading about that in Grinker’s Unstrange Minds and being quite surprised. I really should’ve used an even broader choice of word than Kanner in that sentence, but I was in a hurry to get to the computer lab…

  14. Way to call a spade a spade, Amanda.
    I have to laugh at those aspie snobs…..after being incredibly irritated with them of course. I was never very comfortable with the distinction between Aspergers and other kinds of autism in the first place…….autistic is autistic……….KISS (keep it simple stupid) Of course there are variations, but it seems people just have to overcomplicate everything these days……our lives are complicated enough as it is in a world that clearly was not planned for our ways of thinking……..without this extra crap of artificial, unscientific distinctions……

    If you’re not sure what “calling a spade a spade” means (and this is impersonal you…..could mean anyone reading, not you Amanda specifically) it means calling bullshit on something that really is bullshit. Apologies to anyone who feels I’ve somehow insulted xyr intelligence with this explanation….

    Andrea the Integral

  15. There are the things that I know I do well.
    There are the things that I know I don’t do well,
    But then there are the things that I don’t know I don’t do well :)

    That ought to be a motto for everybody. With apologies to Donald Rumsfeld.

  16. I am not insulted to be “lumped together” with autistics who have certain characteristics differently from me. IN fact, to me, the term “Asperger’s” (which is my formal diagnosis) sits uneasy with me precisely because of its association with “geek syndrome”, just-a-difference-not-a-disability, etc. However, I do realize that is othering people who do identify with the Asperger’s label.

  17. I was dx-ed with Asperger’s a little over a year ago, and I had been feeling pissed off with myself for a long time because I knew I was using the label to hide from the misconceptions, ignorance, bigotry, and marginalization that would come my way if I simply said “I’m autistic.” It’s not like I can really “pass” for NT anymore, nor do I want to. Mid-life autistic burnout has taken its toll several times over, and I have no energy left to spare for pretending to be typical. But I didn’t want to become stigmatized for saying that I was autistic. So I said I had Asperger’s, and you can be sure, I threw in the high-functioning label, too, which was divisive, misleading, simplistic, and a complete joke when applied to certain aspects of my neurology.

    After Bev’s brilliant post of a few days ago, I realized that I’d had enough of this hiding, especially if it meant that I was sharing a subset of territory with Carley and his ilk. So, I changed the name of my blog from “Asperger Journeys” to “Journeys with Autism” and I changed the URL as well. I’m done with using the AS label. Others dx-ed with AS are following suit. If some want to use the AS label, and want to do it in a way that isn’t bigoted and dismissive, I’m happy to give them their space. God knows, there ought to be room in the autistic community for diversity. But when people start using the AS/HFA label to suggest that they’re better than the next autistic person, it’s proof positive to me that they’re not.

  18. Like Rachel, i was Dx’d AS about a year ago, for me at the surprising age of 53. A couple of people in my family refused to believe it at first, saying i couldn’t possibly havein Asperger’s. Yet, my behaviour had at some times been more deeply Autistic than Asperger’s, to put it in the terms most “separatists” would relate to, and these family members had simply never seen me in that light. Under stress, i become more profoundly Autistic, including losing sometimes even entirely my verbal ability. I came to realize that my profile is as well quite uneven in different areas be as far as how i would be rated given current criteria, and so it is simply highly misleading for me to be called Asperger’s, because it doesn’t even touch on all of this variation in my characteristics. Like Rachel, i have experienced “burnout” as i’ve gotten older, which has only been exacerbated by multiple autoimmune disorders, unfortunately including Multiple Sclerosis, which in itself has affected my speech patterns for the worse sometimes even in non-stressful situations, and my walking as well, which has put me on forearm crutches. Given all of these factors as well, i simply don’t have the energy to spend trying to act within socially acceptable parameters most of the time. I can actually feel that draining my energy away when i’m put on the spot! I often stay in for prolonged periods of time, or only go out to get out into the woods when i have the opportunity.
    Besides the above, i came pretty quickly to feel, as many have expressed here, disgust for the elitism expressed by the “separatist” Aspies. I’m not going to pretend that i’m merely kind of odd, but brilliant, which makes it ok. I am Autistic, and i know that affects my life most profoundly. I am not ashamed to say that, either. I have not accomplished what my family wanted for me. I felt shame and embarrassment for that for many years. My functioning in the world has been greatly impaired, as far as being able to actually develop a career – or even hold a job for very long, or maintain a relationship. And yet, as my few close friends have assured me, i am a valuable person, just as i am! My cat believes i am too!

  19. When I first got diagnosed with Asperger’s, it was confusing as hell to keep track of the differences and similarities that changed with the bias of the speaker. Always hated the word; nobody knew what you were talking about when you said “Asperger’s”, but you always felt like a pretender for saying “autistic”.

    It’s been a real challenge in the three years since my diagnosis to clear out my own biases and snobberies and just plain live in the world. I kept playing games with myself, espousing equality but clinging to illusory powers that I’m now happy to be rid of. They had as much to do with class as anything- living up to bourgie standards, and espousing them with a mindless zeal, is a tad challenging (and a tad pointless) when you’re on the poverty line for nebulous reasons and your alpha nerd colleagues invent creative ways of dissociating and putting you in your place. I’m annoyed for having been just like them and thrilled to be rid of that meanspirited foolishness.

  20. Dang, Ma’am! It seems like you always manage to change peoples’ vague, incoherent notions (like mine) into perfectly rational irrefutable arguments, with amusing interesting digressions on the side. If I had any money to spare, I would send you some.

  21. Pingback: Dear Exclusionist Aspies « Astrid's Journal

  22. I think that one of the biggest difference between myself and those who get called “low functioning” is that they operate under a more constant level of anxiety, either for chemical reasons (some people become anxious more easily) or because they are even more sensitive than me to the things that I am sensitive to. That’s not to say that other people’s experiences match up to mine exactly otherwise, but I think I could very easily be called low functioning if I was stuck in an environment that was a bit worse than my current one. Changes that would be relatively small for other people are the difference between failure and success for me, and I imagine this is true for the “low functioners” too.

    Rachel said:
    “But I didn’t want to become stigmatized for saying that I was autistic. So I said I had Asperger’s, and you can be sure, I threw in the high-functioning label…”

    I think this is probably the motivation in most “elitists.” Not true snobbery as much as fear, trying to prove to oneself or others that you are still capable. And it’s much easier to prove that you are capable if you can point to someone who’s not capable, and show how different they are from you. When you’re in this mindset, trying to protect yourself, and you come across the official BS about autism, the elitism is just an easier conclusion to make than that the dominant ideas and conventions are wrong. I came into contact with autistics.org relatively early when I learned what autism was and how it applied to me, but I might have done the same thing otherwise (as it turned out, I could often relate to the “low functioners” more than the “high functioning” people). Hopefully some of them will read this and realize what they’re doing.

  23. That can be the difference for some people.

    In my case, I have tried to work out why I have so often been labelled that way since the first time it happened, and am at a loss. Granted the first time my communication skills were far worse than they are now, but since they superficially looked fine and I even had more speech then than now, I don’t know if that is what they were basing it on.

    Currently I suspect a lot of it is the total lack of speech aside from random and mostly useless echolalia (I have found it sometimes has a roundabout relation to something that is happening but no more) and vocal tics. And the rest of it is probably my default body positions. My anxiety levels are lower than they have ever been in my life, but I have almost no energy to force my body through the contortions that allowed it to… if not look “normal”, at least look like if people were steadfastly determined to view me that way then they might be able to.

    (I have found that most times in my life, passing has been less about my outward traits and more about what other people are determined to force themselves to believe about me. Since I have been told whenever people who were there were being objective, that if they truly knew much about autism at the time I would not have passed, and that my tendency to stick out like a sore thumb existed back then as well, but was attributed to many other sources.)

    So in that sense whether we are called low or high functioning can have more to do with the observers than the observed.

    Part of my problem in understanding it is that my actual perceptions of people have never seen those divisions. I can’t see what makes one person “obviously” LFA and another “obviously” HFA. I used to think this was due to a social deficit but as time has gone on I have more and more begun to suspect that it is rather the absence of a set of prejudices that have, due to being common rather than due to being accurate, taken on the sense in most people that they are directly observing an obvious and genuine fact. Because when I look at the number of traits an autistic person has (many), versus the traits normally used to define functioning level (a tiny tiny number in comparison), it just doesn’t add up that functioning level is an objective fact. I have begun to think that if a person divides others up in this way then it says more about which traits the person values than about which traits the “HF” or “LF” person has.

    This means that the gulf between someone normally considered “HF” and someone considered “LF” can be as wide as miles or as thin as a hair. For instance the gulf between me and AnneC is as thin as a hair, if that, but most people consider her HF and me LF due to a small number of superficial traits (some of which are imaginary).

    So in some cases it is something like increased anxiety on the part of someone usually considered LFA. Or having more of a certain “negative” trait. Sometimes it is that the “LFA” person has a skill an “HFA” person lacks. Sonetimestge opposite. Sometimes it is entirely and totally a difference in life circumstances where if there could be two totally identical people one would be in circumstances getting them called HFA and the other in circumstances to be called LFA.

    And when you start noticing all this, any faith in the idea that these are real and objective categories vanishes entirely.

  24. “Sometimes it is entirely and totally a difference in life circumstances where if there could be two totally identical people one would be in circumstances getting them called HFA and the other in circumstances to be called LFA.”

    You’ve hit the nail on the head once again. I have a tremendous amount of support from my husband. His support allows me to do things that would otherwise be impossible, because I’d be expending my energy on all the tasks that he assists me with. When he is away, my functioning level decreases significantly; I go into minimalist mode.

    Plus, his very presence makes people see me as HFA, because most people figure that if you’re married to anyone, especially a well-liked NT, your functioning level must be quite high. These people don’t actually see how disabled I am because my situation looks so “normal”–house, kid, husband, car (which I don’t drive anymore), and work resume (which lists a lot of jobs I couldn’t spend five minutes doing anymore). But as you say, what people see and what’s really going on are often two completely different things.

    Every autistic person has such a mix of traits that simply dividing people into HF and LF is both absurd and objectively impossible.

  25. I have heard autistic women tend to have had more relationships with the opposite sex than autistic men. I have even had a boyfriend (and several other guys explicitly interested back when I was closer to conventionally attractive) and I am gay (have had pretty much zero experience with women though).

  26. “I have heard autistic women tend to have had more relationships with the opposite sex than autistic men.”

    Interesting, Amanda. I’ve never thought about this before…….why do you think this is the case?

    I’m curious to read what you and others might have to say about this. Though it is a deviation from the original topic…..

  27. Amanda wrote: “I have heard autistic women tend to have had more relationships with the opposite sex than autistic men.”

    I’ve heard the same thing though I’ve not seen a study done on it. But in any case I would be a statistic here as I’m partnered with a (geeky) guy myself. I have found, anecdotally, that many autistic women, even those who end up partnered as adults, have (at the very least) atypical histories.

    Either we were totally excluded from the “dating scene” growing up and had no partners whatsoever until adulthood, or we ended up involved with someone very early and perhaps did not entirely grasp what was going on at the time.

    I was mostly the former, aside from a few isolated incidents of someone (apparently) being attracted to me but my not even realizing it — like when I was a teenager and this 23-year-old guy offered to show me his house (in the woods, no less), and I thought he literally just wanted to show me his house (and he was so taken aback when he realized I really really thought that’s all he was after that he sort of very rapidly left the situation and never spoke to me again).

    And, the partner I am with now is the ONLY partner I have ever had, and I met him when I was nearly 21. When I was 20 I would have told anyone who asked that I expected to be single forever, but apparently there was someone out there I was compatible with and I am really glad I met him. I know not everyone is so lucky but I sure as heck don’t think being single forever is a logical criterion for whether or not someone is autistic. Because just like in communication in general, it takes two (or more) people to have a relationship and it makes no sense to just presume that if you’re autistic NO ONE IN THE WORLD will ever want to be with you.

  28. I remember having this attitude at about age 11, shortly after diagnosis. I don’t know exactly how or when I got over it, though primary factors were learning the variety of experiences, and gaining confidence to confront ignorance.

    “To me the change in criteria upsets me because in some respects it is stricter than the old one (a person must now be judged to have all three social criteria, when the social criteria are little but the products of two mismatched neurologies meeting, and not inherent to us at all, meanwhile our communication difficulties now mean barely anything)”

    Hmm. The social aspects are quite minimal for me, at least in the last few years, whereas communication difficulties play a much larger role in my interfacing to the world. Hopefully it won’t affect me adversely when it comes to access of services; I have a surviving report of diagnosis from about a year ago.

  29. Yeah, I pretty much didn’t realize it was that kind of relationship until he made it explicit. It turned into a terrible relationship where both of us were out of our depth and he became abusive. But oddly we get along fine now, after we both did a lot of growing up, and he’s seeing someone else. And he was definitely on the geeky side of things, I think it can take being different in some way to see us as attractive, rather than the repulsive person lots of other guys explicitly told me I was. (I think I looked conventionally attractive from a distance but when people got close enough to see the hairiness and hygiene problems and odd mannerisms… well people called me a troll and not in the online sense. My life is much simpler in many ways now that I don’t look attractive to most guys even at a distance, it saves a lot of awkwardness.)

  30. My grandson is a nonverbal autistic and I neither look down on him nor do I feel I need a separate category. That people can’t grasp the concepts of complex fuzzy sets and spectrums due to us vs. them dualism or pigeonholing people is clearly limiting, cognitively.

    I picture normality and the autism range as extremely enmeshed 3D objects with many fuzzy projections that deeply penetrate the other, and one range nestles within the other. So, while picturing linear left to right ranges is a start, doing so and attempting to add clear division along the way (autistic, aspie) actually prevents greater clarity by creating shorthand terms for who we are that often don’t fit our realities. Some of us are extremely high functioning yet may be severely socially inept, to put it politely. That would describe myself. I don’t have friends not because I loose them but because I don’t have a clue how people make friends. I’m nice to people, I mind my manners, I try to follow protocol, but it never seems to be enough or on the right track.

    The [Feb. 10, 2010] NPR recording is most excellent, by the way, and touches on the topic of this above blog entry. http://www.npr.org/templates/story/story.php?storyId=123527833

  31. I respect the sense of community but ya’ll need to realize that the word ‘autism’ carries a bitimg stigma and the average person is not going to take the time to feel out the nuance and range of the term. To think otherwise is very…autistic.

    So to be angry that people dont want to be known as autists is foolish. Remember, asperger individuals are often the ones who actuslly adapt into full lives in spite of huge hurdles. So when youre in your cocoons remember things work differently in the real world when you have no help.

    I would say…dont take this so personally. Some people will look down on you and thats their choice…why worry about it? This kind of entitled ranting makes it worse. Nobody has to respect you or feel sorry for you. Its not a rule of the universe.

    Bottom line is that the word has a heavy stigma and people dont want to be stigmatized. Nothing surprising or hard to understand about that.

  32. “…the diagnostic categories are neither deep nor penetrating nor accurate. They divide those with the most in common and connect those with barely anything in common in such haphazard ways it should be obvious that they are falsity of the worst kind.”

    I think they are also a falsity in that they create a distorted view of history. People get the idea that Kanner observed one group, Asperger a slightly different group. It’s actually other people that later created the dual division. The existence of two categories rather than, say, three or five, is pure coincidence, based on the fact that there were these two guys people could use as some kind of symbols for different ideas, because they happened to be talking about the same thing at the same time.

    I’ve been reading a text by H. Asperger from 1952, and he said this, among other things (my translation – no intention to offend with the outdated terminology, just don’t want make H.A. to be more modern in his thinking than he really was):

    “Unfortunately the positive and knowledgeable traits are not always dominant in the autistic character. There are people of this kind at quite different levels of personality: from the original bordering on genius, through peculiar, impractical eccentrics with limited functioning, to machine-like feeble-minded people with the most severe contact disturbances.”

    For Asperger, “people of this kind” included all of what is now understood as the autism spectrum. It is a questionable tribute to the man to stick his name to a part of the spectrum when he never described such a division. He was well ahead of his time in recognising the similarity between autistic kids who needed a lot of support and their successful autistic parents, and concluding that this meant heredity and varying levels of difficulties were key concepts in understanding the whole phenomenon.

    On the other hand, he was a product of his time and utterly stuck in the medical model. It would make sense to give him credit for the things where he showed great intelligence and foresight, but not stick a whole group of people with his name from here to eternity, as large parts of his work and philosophy are now well and truly outdated.

  33. I’m not really sure what others’ experiences have been, but in our case most of the male partners we’ve had seemed to go after us with predatory reasons– because we were vulnerable, and because we (at the time) believed so deeply that we were unlikable, we’d go along with anyone who was being friendly towards us and didn’t overtly seem to be setting us up for something bad. One of the ones we ran into was one of the kinds of geeks who believes that he’s a “Nice Guy,” but in reality has deeply fucked-up attitudes towards women and relationships. (And of course blames it on “women don’t want Nice Guys” every time he’s turned down, rather than noticing his own fucked up attitudes.) We found out after we’d been in a relationship with him for a few months that he believed sex between adults and children was okay (and I don’t mean like teenagers who are still legally considered children, I mean children), and he started wanting to do disturbing things with our system’s kids.

    But, yeah, in any case, it seemed the common thread with most of the men who either dated us or wanted to date us was that they saw a socially gullible woman (or teenage girl). They didn’t actually care much about personality or common interests at all, even if they got us believing they did. Which actually held as true inside the geek community as out of it. There seems to be a weird dynamic where in a lot of primarily-male geek social groups, the most prestigious thing is to get a “normal,” non-geek woman, not a woman who will appreciate your collection of video games and Star Trek novels and your graphing calculator just as much as you do. We ran into several men who seemed to back off and decide they didn’t want to be that close to us after we started talking about video games a lot, or whatever. Apparently this made us the last resort for the losers who couldn’t get any other woman.

    (Note that I’m not saying this applies in every single social group. I’ve seen plenty of successful relationships between men and women who were equally geeky, and were attracted to each other because of their common interests. But there is definitely a… thing, I don’t know how to describe it. It seems to be most prevalent in under-30, primarily male groups that are centered around something recreational, like roleplaying games or fandom. For all the articles that pop up occasionally about “how to get your girlfriend into your hobby,” most of which are full of sexist patronizing crap, men in those kinds of social dynamics can treat women who ARE into their hobbies already, without requiring prompting, like shit.)

    But… yeah, I don’t claim our experience was typical, and I’m not saying all men in all mostly-male geek social circles are like this or anything like that, but there does seem to be a thing where autistic women can be seen as vulnerable prey by certain types of non-autistic men. Even if their relationships aren’t overtly abusive, and only one of ours actually was, it’s the kind of thing where you look back over the years and realize you were basically being used, that there were lots of warning signs you didn’t pick up on at the time; that you were treated like an object and that the guy was laughing/boggling at your “craziness” on some level the whole time, but figured you were too stupid and naive to realize it. (And that’s kind of the best case scenario, really. During adolescence, we got some apparently out-of-nowhere offers for dates from boys we didn’t even know, and didn’t respond to them because we didn’t know what to do; looking back at the kinds of cues they were giving off and what we know now, I suspect they would’ve ended in date rape or something close to it.)

    Anyway, yeah, going off on a tangent here. :\ We had something to say about the aspie supremacists/snobs, definitely, but I think we’re going to put it in our own LJ.

  34. Oh yeah despite not Having experience with more than one guy in any long term sense I have also been glommed onto in a disturbing amount of predatory ways. Including guys who would seem to zero in on me in a room full of women and end up grabbing my foot and rubbing it on their genitals or sticking their foot up my butt and wiggling it around, and in many such instances people saw and did nothing, or blamed me for existing in the proximity of these guys. Then there was the guy who proposed to me when we hadn’t even been seeing each other. (A sociopath who had a long habit of making himself into the picture of sweet sensitive guy and dating women for roughly a month before they left him, then doing it again. Also a compulsive liar and who knows what else, has had restraining orders out on him. But who maintains a superficial image of “sweet and slightly wistful romantic” to those who don’t know him well enough to know he is one of the creepiest people they’ll meet.) So while I have had one actual relationship, I have had multiple mostly-involuntary relations with very screwed up guys who seemed to go for me as a good target.

  35. My main concern with the diagnostic shift is whether anyone will believe me again if I come up to them and say I’m autistic. I mean, a lot of people don’t seem ready to concede that I have Asperger Syndrome and admittedly know nothing about the subject.

    That being said, I am really in favor of the DSM-V using a spectrum approach to the diagnosis. It will just make it that much more important I think for us to take control of the public perception of what autism can include. I don’t see autism speaks running any media campaigns trying to reach out to school counselors and child psychologists to let them know to look for those kids who aren’t head banging and poop smearing.

    Hmmm, if the diagnostic shift could be used as a lever to emphasize that “autism every day” isn’t… that’s an interesting idea. I think we’ll really need to redouble our efforts on this one.

    My wife points out, the aspie snobs and the “can’t be autistic because…” reverse snobs will all have to learn to share space. This diagnostic shift could really help that way, but will make our community, lets say, a bit more interesting for a while.

  36. I’m too poor to be a member of the official aspie community, but I can say that there is indeed a difference between myself, who had mild autism as a child, and my nephew whom I directed to the right people to be diagnosed properly with Anglemans syndrome. That difference is that I can speak, hold a job, drive a car, and even deal with uncivilized bigoted co-workers in a very reserved and civilized manner. My nephew, without help from parents or the state, will simply shrivel up and die. To the so-called high functioning community that doesn’t have to deal with fitting in as a matter of survival, autism is a religion and and excuse to feel special. To others, it’s a curse and a stigma, and to others still, it’s a marker to direct treatment with little hope of recovery or some semblance of a normal existence.

  37. Pingback: High and low | autisticook

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