A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA. When I use these words I am discussing the beliefs of people who do believe in them. Edited to add: aspie supremacy is a shorthand and people should be aware that the prejudice contained within it can and does affect many with the AS dx.
I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.
Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.
Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.
A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.
Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.
When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.
Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.
Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.
But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.
I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.1 I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.
This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”
Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.
I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.
1 Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.
Tags: ableism, Autism, autistic supremacy, Death, elitism, Ethics, Medical, Power, privilege
Related Articles
51 users responded in this post
On the flip side (with HFA/AS), I get annoyed by comparisons to Newton and Einstein. Or people saying that many get married and children. I may be a “high functioning autistic/apsie” but at best (using all my effort) I’m low to mediocre generally.
This is a great post. I never thought to the very serious consequences of life and death that this supremacy could cause you, since my life value was never questioned in an actual, medical situation past infancy.
With regard to institutionalization, the not-like-me meme, etc., I must say that it is not so much what the “aspies” call themselves (ie. the Aspie/autie distinction), but the fact that they set conditional limits on acceptance. My diagnosis is Asperger’s and I do not meet the standards set for “aspies” by supremacists for not to be institutionalized.
Astrid: Yeah. I definitely don’t know an easy way to sum up all the different criteria that supremacists use to make the distinctions here. “Aspie supremacist” is a good shorthand but it doesn’t capture those who are AS-dxed but shut out by the supremacists in so many different ways.
Marcie: I don’t like the retro-diagnosing stuff either. I don’t mind that they say many autistic people marry, because many do, but it’s a problem when they make it sound like it’s easy for most of us to get to that point. (I have only gone out with one person, it was an awful relationship on both sides, and I have never gone out with anyone of my preferred gender. At this point I am just leaving it to chance because I don’t want to try to force myself to find someone, but given my limited social opportunities it’s not likely.)
Something I was trying to get to earlier (having trouble verbalizing it) is that when someone is putting in all their energy just to pass, what happens when they run out of energy? It took time to admit that that I had a disability, that I need help sometimes. “Aspie supremacists” need to realize that they are potentially harming themselves also. Though in ways much more subtle than death. (Note: I’m not saying the NTs are better either.)
This is one of the best posts I’ve ever read.
I don’t even know what to say at the moment, except that I think you also came up with the word Aspie-chauvinism, right?
This Aspie Supremacy is probably one of the reasons I stop going to WrongPlanet (it’s a cesspool now) and Aspies for Freedom (it’s a cesspool in training), many of those people there have their heads so far in their butts that the don’t see how much they are like abled privileged bozos that they against.
It’s nauseating and frustrating to an aspie who works hard for the whole of the spectrum not just the few who can wear the mask of normalcy flawlessly.
For the supremacists, the phrase “STFU” is needed.
I’m disgusted by what I call the “Aspie subculture,” AKA, the elitism of which you speak. It’s disgusting. Although I would love to communicate with others with autism to feel something in common, I’m so turned off by the “Aspies” that I can’t even frequent most of their boards. I don’t belong there, and I don’t want to.
Who makes up a cute name for a disease, anyway? It’s ridiculous.
My “official” diagnosis is Asperger’s, but the Aspie supremacists do not make me feel safe at all. They simply give power to the prevailing bigotry concerning who matters and who doesn’t, and the older I get, the faster I’m moving over to the side of mattering less.
I’m not sure how old these people are who insist upon separating themselves from other autistics, but I’ve got a feeling most of them haven’t hit mid-life yet. When I was younger, I could “pass,” but the cost has been extreme. At 51, I’ve gone into mid-life NT emulation failure, big time. Now I am very clearly disabled–I don’t work, I don’t drive, I can’t clean my own house, I have to block sound when I go out, and I hardly speak outside my home.
According to Aspie supremacist logic, my value as a human being is diminishing rapidly. And I know the logic, because I’ve internalized its premises and given it space in my own head. It’s taking constant work to root it out, but I’ll happily continue to clear out the debris.
As someone with an Aspie dx, I am deeply ashamed when I read your post. Let me explain that. I do not mean that *you* cause me shame, or that I wish you hadn’t written this post, or anything of that sort. I am not upset with *you*–your words are of crucial importance and need to be heard by more. Rather, I am upset that people who in some ways are ‘like me’ have such prejudiced attitudes that they have hurt you and many others. I do not want to be ‘like them’. In fact, I’m worried. How do I know I’m not unconsciously adopting some of their attitudes?
I don’t want to develop into someone who discriminates, especially with such dangerous results. I have been reading up on privilege and power, and I’m trying to make myself aware of it in all aspects of my life. I have never felt myself to be ‘better than’ other types of people, whether on the spectrum or off, and I don’t ever want to get that way. I don’t think using diapers/being nonverbal/etc. is some horrible tragedy.
This kind of thing (or at least it is seeming similar to me–please correct me if I am wrong)–is a bit of the reason why I have never met anyone else autistic and why I am kind of afraid to do so. I have never fit in anywhere, and I’m terrified that I will just be rejected again. I’m scared that I’ll be too ‘high functioning’ (at least in some areas). I’m scared that I’ll be too ‘low functioning’ (again, at least with some abilities). I can barely take public transit by myself, but there are (some–by no means all) autistics who enjoy learning about transit systems and feel that mastering the transit system is ‘easy’. I’m worried that someone who shares a dx will say something like ‘You can go to college, so therefore you should be able to take transit’. I am also terrified that I will hurt someone by expressing a view that I have not yet realized is supremacist. That is why I don’t post here or on other blogs sometimes — I don’t know if I have hurtful views and I would rather keep any comments to myself than risk hurting someone.
Anyway, now would be an opportune time to mention that I would like to offer a heartfelt apology in the event that I have ever said anything supremacist, either here or in other posts. An apology can’t take away anything I may have done, but it is my indication that I am going to keep trying to examine my privilege, wherever it may be occurring, and hopefully be a better ally.
I’ve noticed that different people burn out at different times and in different ways.
I burned out spectacularly in adolescence and have been in a slow process of losing the most valued-by-society skills since.
I know people who have burned out in their 20s, 30s, 40s, and even 50s and 60s. Others seem to be able to juggle things so that they don’t burn out at all noticeably anyway.
I once read a couple studies where,,, very roughly a third of autistics lost major abilities in adolescence and about half of those get them back later. The other study said 1/6, making me wonder if they really found a different number or if they only measured the ones whose skills stayed away. And then of course there is the question of how much of a cross-section of autistic people they used in the study.
I know a woman who faked being nonautistic, barely aware of herself or the choices she was making, until she was in her 50s and had gotten married and all kinds of other things in that time. She lucked out to have a supportive husband so when she did finally fall apart and get diagnosed he stood behind her as she tried to figure out who she was under that act.
I remember having several discussions in which people brought up the comparison to post-polio syndrome, which hits hardest in people who tried the hardest to function as if they were able-bodied. The question was whether the movement disorder I have was in any way linked to being pressed so hard to outperform our abilities.
At any rate the topic of those of us who burn out in various ways is of interest to me because it is so much not the current stereotype of autism and yet is so common. I think it used to be part of the stereotype because Sean Barron’s mom was told it was futile to teach him because he would just lose it all in adolescence.
I think a lot of us move in that direction but it gets talked about so little that I often see people freaking out like “Eek I’m getting more autistic why is this going on” to the point I wrote an incredibly lengthy article about it. Because when it was happening to me there was nothing for ten years, in part of which doctors were making incredibly scary predictions and I (and some others) was sure I would be institutionalized forever. The only “hope” I was given was that I would regain these abilities which I instinctively knew wouldn’t happen. So I was petrified and made several suicide attempts.
I post sometimes on WP in part to show there are other options and to increase representation there of non-AS autistics because I know some of the others feel very alone and out of place there. But I have seen some atrocious views there.
Oops, I left a comment yesterday, but it disappeared. It is in the spamfolder?
“I know a woman who faked being nonautistic, barely aware of herself or the choices she was making, until she was in her 50s and had gotten married and all kinds of other things in that time. She lucked out to have a supportive husband so when she did finally fall apart and get diagnosed he stood behind her as she tried to figure out who she was under that act.”
That describes me perfectly, right down to the supportive husband who stands beside me no matter what. I was diagnosed at 50. I’ve read your “Help! I Seem to be Getting More Autistic!” article, and it helped me understand for the first time why I can no longer do all the things I once did. Living in defiance of one’s neurology for 50 years has taken its toll. I know many people in their 30s, 40s, and 50s who are just figuring out they are autistic. The relief of knowing who they are is tempered by the extreme exhaustion of having unknowingly faked being typical for so long and sadness at the damage it has done to their bodies and minds.
This is one of the reasons I flinch every time I hear a parent of an autistic child talk about how their child is “recovering” because of whatever therapy they’re doing. In addition to my visceral response to the world “recovery,” I worry about what will happen years down the road to those children who are being taught to fit in and emulate neurotypical behavior. Will they lose their sense of how to care for themselves? Will they forget who they are? I hope not.
Kowalski: Yep, the spamfolder, alongside a couple other replies to this and my last post. I wish the amount of spam I get would allow me to turn the thing off, it’s a nuisance.
As to aspie chauvinism, I really don’t know. Maybe or maybe not but I don’t have the distinct memory for it that I do for autistic supremacy. That doesn’t necessarily mean anything though because unless you trigger it just right my memory is crap. If it’s triggered right it’s more accurate than average but that means nothing if it isn’t.
Rachel: I have the same reaction when I hear a kid has “lost their diagnosis” or, worse, that the child will now never be told they were autistic. Because then what if they need services when they grow up? Looking like a functional seven-year-old is much easier than looking like a functional adult. (In my case seriously there were these gaps in my skills that were nuisance level when I was nine but never got any better and by the time I was an adult they were huge gaping holes. And people act like I got more autistic in that regard but really all that happened was these things hadn’t changed since I was five or so despite attempts to teach me. Staying the same looks like going backwards if everyone else is moving forwards. There is just so much wrong with pretending to know a child’s future.)
Plus I know too many adults who discovered autism on their own and then were told they were diagnosed as a child, or found out by accident.
@ lydia, OMG what makes you think Asperger’s is a disease?
And why shouldn’t anyone have the right to give themselves a cute sounding name?
I’ve heard the word Biffy for people with Spina Bifida, if I had that I’d totally prefer to call myself a Biffy.
@Amanda, yeah that long article helped me so much to figure out what’s going on with me.
It’s one of the first things I’ve read that you’ve written.
I kind of had that burnout during a time when my health was really bad, I was sick for almost two years and didn’t have any spoons to act non-autistic. Then a bit later I realized that I never pretended to be non-autistic, but I was trying to not appear r*t*rded, because that’s so stigmatized.
There’s also this irritating stereotype that the more NT someone acts the more capable they must be, with me it’s the other way round when I was acting, it cost me so many spoons, I needed many hours of staring at walls to recover, which felt almost like being paralyzed, (inertia, I guess).
And ever since I’m not trying to stop myself from stimming, I’m a hundred times more productive. Plus the self-loathing and guilt is gone ever since I realized that the stigmatization is plain old ableism.
A while ago, I was searching for videos about Nonverbal Learning Disability on YouTube, and found a video by this “comedian” where she pretends to have NLD and affects a voice that is stereotypically associated with more “severe” developmental disabilities.
The comments were full of irate responses from people with an NLD diagnosis — not taking her to task for her blatant ableism, but protesting that “people with NLD aren’t retarded” and that her portrayal was inaccurate. I was so disappointed with these people, who seemed to be fine with her hideously prejudiced routine as long as it wasn’t directed at them. The thing they found most offensive was that she compared them to “those people”…
It had never occurred to me that a parent would keep an autism diagnosis from a child. I can see explaining it in age-appropriate ways as the child grows, but to hide it completely? Wow. Simpleton that I am, I always think the truth is best. And I’m usually right. :-)
@ Ballastexistenz: oh I understand you didn’t mean to say only those diagnosed with Kanner autism are targeted by supremacists. It’s just that the term is a little unfortunate. But then again, it’s the “Aspies” themselves who coined that term and who are using it to erase people who do not meet their supremacist criteria.
By the way, that discussion on burning out is very interesting. I always thought of myself as having had sorts of “burn outs” (I put that between quotation marks because I don’t know whether mine are “real”) first after high school graduation in 2005 and then again after moving into independent living in 2007, the latte rof which leading to institutionalization. I stil feel guilty that I’m not as “high-functioning” as I was like five years ago - I regained some skills, but not nearly all of them. I fidn it really hard to write about my own experience like this, since I’m constantly reminded by some inner voice that I can’t really be saying that I lost skills since how can this be? I know of the studies you list (btw, do yu know where they wer epublished so that I can look them up?), but still.
Amazing post, Amanda. I wish I could print out a copy and give it to everyone I know. (Although I’ve thought the same thing about other things you’ve written.) I too am disgusted by Carley’s comments and by the aspie supremicist attitude in general. In fact, because of this prevailing viewpoint, I’m ashamed to even tell anyone that my diagnosis is aspergers. That and the fact that I don’t believe in the distinction of labels, either. To me, Autistic has much more positive connotations than Aspergers. So in addition to being more accurate, I am much more comfortable calling myself Autistic because I see the word in association with a positive community of like-minded people fighting for human rights. “Aspergers” reminds me of people who believe they are the next step in human evolution, or some crap like that.
Astrid: I wish I had the cites for those studies but they are somewhere buried in piles of paper on a desk I never use anymore because it’s too low for my wheelchair.
Kowalski: When I look at the period of time when I was vastly overdoing things, I find that when I am honest and not just repeating book titles, that “pretending to be normal never fit me. What I was doing was attempting to do what I thought was required of me. Sometimes I passed, but a lot of time passing wasn’t because I didn’t look autistic, but because people around me were willing to ignore or explain away all my traits.
I also perceived little difference between doing what was required of me in a way where my efforts made me look slightly more “normal”, and doing what I thought was required of me by playing along with every psych diagnosis anyone suggested to me. They were both attempts to meet mysterious requirements from a baffling outside world. (And when I was a teenager I was only beginning to figure out certain things about the world that most people figure out as much younger children.)
I also remember being terrified that someone would discover there was. “no good reason” for my increasing inability to function. What I considered my deepest and dirtiest secret was that I was struggling with a nameless and unnameable condition that forced me into repetitive movements, restricted my ability to function, made understanding language difficult to impossible, and made me shut down or melt down with no good explanation for any of this. So when I couldn’t cover it with sheer willpower, in desperation I clung to any and all conditions either diagnosed or suggested to me — adding in traits to “explain” my inability to function as some massive psychological crisis because that at least made sense.
And all of that was the same to me. Trying to do what I thought was required didn’t feel different between “pathological” and “normal” requirements. It was all stuff that felt imposed on me. I wish I knew then what I know now, and yet with all the comprehension problems I am not sure there was any possible way to explain that I would have understood. (I think my shrink tried to explain I was autistic (mostly by telling me stories about other autistics including Temple Grandin), but his methods didn’t get any results other than confusion.)
i did my best to track with all the replies but am more than fried today. I must say I am struck by this article with a huge sense of relief. I am relieved that I chose to use the term Autistic, based on the definition of Aspergers which either you wrote about or that article linked to you or.. it lead me here either way.
I am Autistic. That’s the end of it. I hope that the doing away with the term Aspergers does not deprive anyone of services but does do away with Aspie Supremacy.
Despite being “High Functioning” (Not that I ever feel it) I was also told no one was home and constantly devalued. I wonder at times how much your medical history overlaps mine even though I can speak. After a point, when no one matters then the doctors will still do what they want.
Plus I know too many adults who discovered autism on their own and then were told they were diagnosed as a child, or found out by accident.
This is me. My mother admitted that she blocked an official diagnosis as a child, but finally stated a reason with her usual having hidden what’s wrong with me. She feared for my life. When the doctors wanted to initially test me I was endangered by a sociopathic father, and any excuse to harm me especially would do. She thought this could be the final straw.
I am not sure I can forgive her, as my entire life has been much harder. I have 27 CORRECT diagnosises, all of them she has been aware of. Many life threatening. My need for a wheelchair could be circumvented by a time machine and actually being diagnosed.
I do not feel Autism is a disease, but I do think that understanding my own limitations aren’t somehow EVIL would have helped me. Someday, I may email you in private Amanda, as I have questions and suspect you could not only answer them but would see a perspective I am not capable of.
I am going to take my smouldering body to bed now, but thank you for this.
Re burnout, as far as any of us can remember… we lost some skills around 4 or 5, gained some back and some new ones when we were a bit older, lost some of those when we were about 10 (a lot of the gained and then lost ones having to do with speech), and spent our entire adolescence gaining and losing and regaining and losing certain abilities over and over, many of them having to do with things like school and writing.
And then things seemed to stabilize during a period in our mid-20s during which we lost some of the skills we’d kind of been barely holding together for the past few years, including some that made us look stereotypically “lower functioning,” but became a whole lot better at communicating in writing in certain ways. It was in many ways basically a burnout, and we’ve described it as one and still sometimes do; we did spend the next two years not able to leave the house much or communicate with anyone save a few people, and when we started going out again, it was with a lot more restrictions on how far we could push ourselves.
Up till that point, we had always been able to push ourselves past a certain limit and keep going. It was like we just hit a point where we got… critically overdrawn on resources, drawing on them even when they weren’t there, and couldn’t do it any more. Our housemate first started to notice it when we had an 8 AM chemistry lab (something which is totally incompatible with our internal chronology even when we’re taking medication to stabilize our sleep schedule) and we would force ourselves out of bed, and they said, later, that they should have mentioned something about how fatigued and not-normal-for-us we looked on those mornings, but wondered if they were imagining it. And finally we just hit a point where we’d lie there screaming at ourselves inside our head to get up, bite the bullet, get our ass in gear, etc, and going “why can’t I move? Why is our body just lying here no matter what signals we try to send to it? Why does every muscle in it feel like rubber? Why do we keep making these whimpering noises every time we try to move? Why is it so hard even to open our eyes?”
Also, during the times we convinced ourselves that we’d “recovered” from the nameless bad thing we were sure was wrong with us, it usually had to do with being able to fake more NT-stereotypical behavior. Except we can see clearly in retrospect that our “faking it” actually wasn’t convincing “faking it” at all– our “small talk” didn’t make any sense to most people (not only in the subjects but in the fact that it often didn’t even resemble the structure of standard English), and at one point the only reason we got away with not standing out any more than we did, was because we were in an environment where a lot of people acted “bizarre” on purpose.
Also I think that last comment of ours got caught in the spam filter.
Kateryna: I got my first “nobody home”, as well as my first “low functioning”, when I could still sometimes speak. I don’t think speech is the only reason for that classification.
I think too when and where you grew up is important too how soon you are diagnosed and with what. There was a tendency in the 70’s and 80’s not to stick labels on children too early. Our pediatrician talked about children being “wired differently”….and seemed to give respect to differences. Back then people were talking about hyperactivity and then ADD. I didn’t even read about Asp. as a diagnosis until our oldest son was in high school when I read about a “new dx” in a Sunday newspaper. I have to say as a parent it was a lonely road. Nightly meltdowns once school started…believing in a child strongly and seeing such bullying and exclusion…
Never being able to offer something to help fully because we didn’t understand the problems involved. The school offered speech therapy but we had to find integration therapy privately and did not get certain testing done because we didn’t know about it until well beyond when it would be optimum and helpful. I know Amanda’s sensory problems became something school bullies used to tease her. It was odd too having two children in the house with feedback systems that were at odds with each other. One could hear a pin drop a block away and the other over-modulated constantly as his feedback system didn’t let him know how loudly he was talking.
I know that now autistics are identified much earlier and if testing is specific and re-assessment is done later skill by skill so it has some practical aspect and application then I see that as a useful tool. Audiologists can offer assessments and helpful accommodations. There were definite reasons a person could delve deeply into one subject of interest but couldn’t figure out how to clean a desk or backpack or keep a room straightened or initiate a conversation with someone new. I think early diagnoses is a good thing because knowing something is always better then not knowing as knowledge is a tool. That said,what we need to see happen is to make sure every classroom gives every child what they need and an individualized program and acceptance and respect for who they are, Autistic and neuro typical alike. This attitude needs to seep into every aspect of our society and support needs to follow one through life.
As my burnout involved losing my neato-impressive techie skills (and some ability to read, write, and remember my name), I guess I might be considered worthless or at least an embarrassment to the Aspie supremecist crowd.
I hope I wouldn’t have ended up thinking like JMC if I hadn’t lost those abilities, but it did get me thinking more consciously about the messed up ways that society assigns value (or not) to people in the first place. Rather than trying to desperately rearrange the cards that weren’t there anymore. “No impressive ‘compensating’ skillz? Got a cognitive disability, too? Wow, that’s pretty worthless!” There is such a mountain of cultural programming against even seeing that ‘game.’
Is this the same group of people saying that Asperger’s is not/never a disability unless there are “co-morbids”?
for Rachel and Marcie, this is the article http://www.autistics.org/library/more-autistic.html
it has helped me tremendously for understanding things about me and my equally-though-with-a-different-flavor autistic husband, as we go away from being young and towards being middle aged.
Thanks, n. I read the article last year some time, and it helped me tremendously. (I even quote from it in my not-yet-published book.) Until I read it, I couldn’t figure out why my skills kept dropping off the map on a regular basis. Now I do. What a relief to understand!
makoto — I don’t know if they are exactly the same people but I know there is massive overlap. I can’t stand the arrogance of “You are all just like us except you have comorbids, so let’s try to cure the comorbids so you can be just like us!” Gack.
Until now, I wasn’t even aware that there were people who say that “Asperger’s is not/never a disability unless there are “co-morbids”. I don’t understand that point of view (and I’m not just saying ‘I don’t understand’ to mean ‘I don’t agree’, I truly don’t get it. I can see in myself that there are gifts that being on the spectrum has brought, but I can also see the challenges that it has brought…)
I too have found the “I seem to be getting more autistic” article useful. These days, at least when I am alone, I stim more than I used to, and I think at least part of that is an attempt to ‘relax’ and do things that feel natural rather than hold in stuff that would feel natural. I didn’t get diagnosed until my early 20s, though, and I have had to live so long holding things in and behaving/not behaving in certain ways that it is now pretty well reflexive to go along with stuff that doesn’t feel right and to hold in things that do. Basically, I feel like a total impostor because ‘being NT’ has become a way of life. I have had to adapt and do things ‘the NT way’ (not that I am trying to say there is only one NT way) to the extent that although I can identify others who are likely to be on the spectrum when I see them, I would have no idea how to interact if I could hang out with them. This is a reason why I am in favour of making it more possible for autistics to meet and connect–people might not have to experience feeling alienated from both the NT world and the autistic world if they were shown that there were more ways of interacting than ‘the NT way’.
Anyway, I don’t know if that makes any sense to anyone, and I’ve probably only ended up offending and confusing people, so I’ll stop now.
Heh. I’ve been working on a blogpost about “pretending to be normal”, talking about the costs of doing so. Isn’t done yet, and it’ll be a few days before it’s up, as I already other posts on the schedule. Some of the comments above remind me of a couple of guys I knew who had turned to drinking, I guess to ease the pain of always having to pretend.
To get back to the topic, I like how Kateryna said, “I hope that the doing away with the term Aspergers does not deprive anyone of services but does do away with Aspie Supremacy.”
There’s a fella who calls himself “MJ”, with the blog called “Jabberwocky” who points at all those on Wrong Planet and says that they represent Neurodiversity. I’ve been trying to disabuse him of that notion.
Littlewolf,
What you say makes sense to me.
I suspect that, to some extent, all people with disabilities are sort of “trained” to try to behave as close to “normal” as possible even if this means giving up behaviors that are natural for us and adopting behaviors that are difficult to sustain over the long term (even if we can fake it well enough to get by in the short term). This is probably because the so-called “medical model” of disability assumed that we were the ones in need of fixing and that our biggest problem was that we were not “like normal people.” Thus appearing more “normal” would automatically “fix” us even if it actually made it harder for us to function. Unfortunately, many non-disabled people have a tendency to assume that if THEY find it easy to deal with US then we must surely find it just as easy to deal with them. For example if they find it easy to talk to a deaf person because the deaf person never asks them to repeat or write things down they assume things are fine. It may not occur to them that the deaf person may actually be missing a lot of nuances–failure to speak up may simply mean they have decided that the minor nuances were not worth the trouble of asking for repetition. Or even if they’re catching everything, they may be becoming tired very quickly from the effort of lipreading.
We see this attitude with deaf children still today being implanted with cochlear implants and forbidden to sign because doctors assume that cochlear implants remove the need for sign language (they do not) or that learning sign language would remove incentive to speak (if the child truly is going to find speech a feasible solution for communication–and many deaf children do–then learning to sign will not remove the impetuous to speak well, it merely gives them one more tool for communication in situations where speech is not enough. If they DO lose motivation to speak then that was very likely a sign that speaking was consuming far more spoons than anyone else might have realized, in which case sign language is a necessity).
To some extent, we are moving away from that model, at least for deaf people, and people with various physical disabilities. But as in the examples above, to some extent the model is still with us even for deaf people, people with physical disabilities, etc. From what I read in the blogsphere (since I am not Autistic I can’t speak from personal experience) it sounds as if the model may be even more pervasive with Autistic people, and perhaps people with developmental disabilities in general, than it is for other disability groups.
I apologise for not finding time to read all the comments, only the original post. There is something I wanted to point out. You talked about infants. Infant comes from the Latin infans, which literally means “one who does not speak”.
Most verbal adults seem to think that those who cannot speak cannot think or act (as you have often pointed out, Amanda.) This is perhaps the heart of Aspie Supremacy.
When this prejudice is extended to those who cannot speak the “correct” language, with the “correct” accent, complete with all the “correct” intonation body-language, then the Aspie supremacists realise they have made trouble for themselves as well as hurting people with the HFA label.
(And of course, Aspie supremacism also indirectly hurts pre-verbal typical children, imigrants, deaf folks, people with all sorts of speech/hearing/cognitive impairments.)
I suspect that, to some extent, all people with disabilities are sort of “trained” to try to behave as close to “normal” as possible even if this means giving up behaviors that are natural for us and adopting behaviors that are difficult to sustain over the long term (even if we can fake it well enough to get by in the short term). This is probably because the so-called “medical model” of disability assumed that we were the ones in need of fixing and that our biggest problem was that we were not “like normal people.” Thus appearing more “normal” would automatically “fix” us even if it actually made it harder for us to function.
When I was a kid growing up with a physical disability, there was a definite sense that acting more ‘normal’ was good, and anything that seemed ‘more disabled’ was bad. And…a weird kind of fear. Like if I didn’t keep up the act, and manage to be ‘normal’ enough, I’d lose out on being able to go to class with my friends, do interesting and challenging subjects, eat lunch without adults hovering over me, and all of the cool stuff that went along with being close enough to ‘normal’. It’d all be taken away, and I’d be dragged off to the resource room where adults hovered constantly over kids in power wheelchairs and spent all of their time on things like how to hold a pencil.
It wasn’t entirely a rational fear, but it wasn’t entirely baseless. Most of the fun, dignity, and basic decent treatment came with being considered capable of keeping up with the ‘normal’ kids. And any activity organized specifically for disabled kids would be full of intrusively controlling adults who felt the right to micromanage everything from my meals to my bladder habits, with no regards for my abilities and preferences, because I was one of the disabled kids.
I think that’s part of the reason so many disability groups emulate the ableism in society at large. For a lot of people, there’s the experience of growing up ‘good enough’ to be allowed some privacy, autonomy, and respect because of achievements and abilities. And having it periodically threatened or taken away because of being categorized as ‘one of those people’.
So there’s the same desperate “I’m not one of those people! They’re icky, and I’m nearly normal!” attitude. And the same things being stigmatized (lack of economic productivity, lack of control over bodily wastes, etc.). Because a lot of people get stuck on the illusion that making yourself seem different enough from ‘those people’ will protect you, and claiming commonality will doom you. When in reality, everyone’s safest if the people at the bottom of the hierarchy are safe.
Thanks for replying to me, Andrea S. I don’t have any interesting or intellectually stimulating ideas to add to the discussion at the moment, but I wanted to say that it gives me relief to know that others feel my comments make sense. (I suspect that there is some element of not learning to trust my own opinions in there, which might or might not be related to my disabilities, but it wouldn’t surprise me if it was…) Anyway, I feel less like a freak now, so thank you. And thank you, Amanda, for maintaining this blog and the comment section — it allows me to connect with others who are, at least in some ways, like me.
Little wolf,
Glad to know it helped a little.
You said …
“I suspect that there is some element of not learning to trust my own opinions in there, which might or might not be related to my disabilities, but it wouldn’t surprise me if it was…”
… Related to your disabilities OR, could it be related to how OTHER PEOPLE have treated you, while using your disability as a rationalization for that treatment?
Hi Andrea,
Yes, I think it is related to how others have treated me. In my head, it seems to go something like this (though I don’t have it all figured out yet): I act ‘weird’ or am ‘too emotional’. Because of these perceived ‘problems’, people treat me as an inferior. I learn that if I behave as who I am, I am treated badly. Thus, I rationalize that my own beliefs/opinions/actions are ‘wrong’. I try to hide my opinions, or even try not to *have* an opinion, because, after all, everyone else is more competent than I am, and what I do/think won’t be the right thing anyway. Others rationalize that it is okay to treat me that way because I am the messed-up one anyway.
It has to do with social acceptance as a form of power/privilege that I don’t have. If you are socially accepted, people listen to you. If you get listened to, you are socially acceptable. (I’m having trouble connecting these thoughts to the above, but I think they’re related…) If you have social acceptance, it is (usually) easier to express your opinions because there is less likely to be consequences (or at least not consequences of importance) for being ‘wrong’. Since my disabilities mean I don’t have social acceptance, I am not free to express my own opinions for fear of negative consequences. Thus, to stay ’safe’, I don’t trust my own opinions because they are ‘wrong’.
If I had to guess, I would suspect that something like this applies to other people with other disabilities too, because disability in general isn’t ‘normal’ to society and PWDs are not always ’socially acceptable’.
Amanda,
You made a very important point in this post. I hope this is read far and wide.
I’ve seen this tendency with my three boys, as young as they are. Arguing for Willy’s value is relatively easy. After all, he talks and has accomplishments that others readily recognize. Society can see his value, because his value is similar to other children his age. He does things.
Yet, I cringe every time I hear Willy valued on the basis of these readily recognized accomplishments. “He’s come so far…you must be so proud!” Yes, I am so proud, but I am proud of who he is not how far he has come.
Being proud of how “far” Willy has come is like saying I’m not proud of Alex, who hasn’t come “far” at all. At least, not in the sense that he seems more typical now than he did five years ago. No, he seems less typical now. Five years ago, people could dismiss his delays as him being a “late developer.” Now, they see a ten-year-old that doesn’t talk and still struggles with some of the same behavioral issues he did five years ago (and some that have gotten “worse”) and “it’s so tragic.”
But, Alex is a good person who adds value to our lives, not because of what he does (though, the belief that he doesn’t do anything because he doesn’t do typical things is absurd) but because of who he is.
I wish–one of the things I wish–is that I understood why this concept is so difficult for some to understand and accept.
I agree very much with this blog entry. It is a worrying trend to see so many people designate themselves “superior” because they consider themselves “higher-functioning.” In my opinion, this privileging of one sort of identity over another is counterproductive, and does not aid the cause of neurodiversity; rather, it creates unnecessary in-fighting and conflict that consumes resources that would be better used by working together.
The idea of “autistic supremacy” also presupposes that there is a “right” and “wrong” way to be autistic, and perpetuates stereotypical non-autistic ideas of what autistics are supposed to be like within the community.
It is akin to other members of marginalised groups (like LGBT people and PoC) saying that “I am not like those OTHER people and am therefore better because I am more like the majority culture,” when the culture at large sees ALL members of the group as being quite similar. It is something I have encountered being in an autistic, gender-variant, PoC plural system, and it is tiresome!
[...] be one thrown up by the unaware autistic themselves. Here too there’s a lite version of the harrowing dynamic laid out at Ballastexistenz this week, in which Aspie Supremacists are willing to throw Real Autistics™ under the bus for the [...]
[...] comments on Amanda’s recent Aspie Supremacy can kill contain a very good discussion of burnout. It’s well worth a read, as is her older [...]
I am concerned by an aspect of ‘aspie supremecy’ that I see occurring more often which is a form of autism misrepresentation. In these cases people loudly and clearly identify as ‘Autistic’ not being on an AS, and the higher the function, intellect, skills, the more the discussion of ‘Autistic’ issues. Which for many parents with child with autism are not issues at all, since their issues are the basic ones of trying to find a way for their children to have joy. While on the one hand, I know people who will spend over a year training a child with ’specialist’ to ’smile normal’ for family pictures or use negative reinforcement to stop putting hands over ears - (since I was trained with a dog manual and responded to whistles, leg taps and knowing how to ‘heel’ this kind of obsession on obedience training is not unknown to me but highly disliked). At the same time, the province where I live will not authorize different types of educational training for different types of children on the Austism Spectrum - there is only one and it is a middle ground one, leaving those on the the end needing support and caregiving in a fragile state, easily abandoned by the government and system, as well as those on the other end, whose only option is to ‘pass’ in order to get a different help or try to get classified as dyslexic, etc.
Ack, back to point - the point is that the more who want ‘Autism’ to represent the high functioning, articulate, university educated and teaching/working in the education or professional fields and the more they try to eliminate the particular stigma of ‘Autism’, the more those who genuinely need assistance and assistive technology are put in the metaphorical and literal closet.
I also do not quite understand why there often seems resistance between those on the AS who use assistive devices and those in the disability grouping? Is that not yet another form of ‘at least we are not THAT!”? A wheelchair is a mobility device. A wheelchair is a mobility device. If a person can walk or can not, spinal cord injury, muscle pain, or any other reason for needing or desiring mobility assistance of that nature means the ability of walking all the time is assisted by a wheelchair. A wheelchair is a mobility device. And there are far more women in particularly who use them who are NOT spinal cord injuries than those who do. To get the kind of changes which allow access and assistance with all assistive devices (I used the wheelchair as an example), I fail to understand how using a wheelchair as ‘an autistic’ versus ‘impaired’ makes a curb cut or a door button a ‘autism button’ instead of a mobility impairment one? Are there to be two curb cuts, one for wheelchairs, walkers, canes and mobility impairments and one for those with autism who use wheelchairs walkers, canes and other devices?
I can’t use dragon because often I can’t speak, due to the lack of oxygen, so too those who are high level spinal cord injuries, and those also for late MD, strokes, TIA’s, Seizures, tongue cancer and other conditions. If your speech is also limited, then don’t we ALL need an assistive device to allow us to express ourselves within our limitations? To wail, or to be in a prison of the body with just an eye to move, it is easy to hear the people making guesses on the value of assisting, of letting you die, of your ‘quality of life’ all the while without trying to bother to find out what you think. The writer of the Butterfly and the Diving Bell had an eyelid to move, and that is all. We all aren’t going to write books, but I also don’t see how that doesn’t put us in the same boat - fighting for the right to live because we are human, a human right of the best quality of life available. Not a dozen groups all focusing that their experience is the worse (what use is that?).
No one left behind - any thing that works against that is a form of supremecy to me, including seperation.
??? - ??????????!…
A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA…..
Alex — what I mean is that I believe the people who get called autistic are incredibly varied. That some do and some don’t actually fit or appear to fit those categories. But that the categories themselves are not a valid way of dividing us up (they separate similar people and put together people with nothing in common) so those categories should be abolished until and unless more realistic categories come to exist.
I LOVE THIS POST SO MUCH. Thank you for finally articulating what’s driven me crazy about LJ’s asperger community, and the asperger internet community of a whole. This whole supremacy thing leaves a horrible taste in my mouth, whether it’s “I refuse to associate with NTs, because they’re nothing like me and will never understand me”, “if you try to manage your Asperger’s it means you secretly want to be NT”, “difference not disability”… all of it. I hate the whole “wrong planet” mentality.. having Asperger’s to me is more like speaking a different language, and there’s no shame in learning to speak NT because at the end of the day, you’re still Aspie.
I’m so happy to see I’m not nuts and a self-loathing Aspie like I was worried I was becoming.
I found this piece through a link from a post on AFF, so it would seem we’re not all “aspie supremacists” over there.
Though I will say that I’ve encountered more than a couple there myself, in the time I have been there (something over a year). They’ve become much more vocal with the coming change to the DSM which will replace the ‘LFA, HFA, Asperger’s, PDD_NOS’ model with ‘Autism Spectrum Disorder (ASD)- severely disabling, moderately disabling, mildly disabling, some autistic traits but non-disabling’ model. The supremacists are opposed to it. Their primary complaint coming down to not wanting to be associated with autists who are more severely disabled than they are.
Predictably, but also ironically since he is effectly agreeing with his sworn enemies, Harold L. Doherty is also opposed to it, going so far as to delineate between the so-called ‘high-functioning’ and people with “actual autism”.
I am annoyed by both the supremacists and Doherty and people who think like him. They all have the same idea about autism. That there are only two kinds of autists. Diaper-wearing droolers or number-crunching savants. And both sides of the neurodiversity/curebie debate are seemingly in utter and complete denial that there are also autists who are BOTH, or NEITHER.
Personally, I’d say I’m a bit of both and a bit of neither. I came to my Asperger’s diagnosis later in life, at 42. This after being diagnosed with all manner of personality disorders and having had a variety of psych medications tested on me since I was 14.
Some have said I’m a brilliant artist. I’ve certainly done a lot of art. Drawing, painting, printmaking, fractals, and now sculpture. And pots. Ceramics is my obsession these days.
But I’m not what could be called successful by any stretch of the imagination. Flunked out of university. Worked 21 jobs in 3 years. I’ve been drawing social security disability (determined to be a pre-existing condition before I turned 18) since I was 27.
Trying to explain myself to someone once, I said that I experience the world in exquisite detail. Sight, sound, smell, sensations relating to touch…which is a times a blessing, and at other times a curse.
Anyway. I appreciate this blog, ballastexistenz. I started one myself to try to provide a picture of an autist who is neither drooling nor raking in big bucks as an IT consultant. An autist who’s got good days and not so good days. I titled it ‘Autistic Terrain’, as it ties into ‘Islets of ability’. Unfortunately, I don’t remember I’ve got a blog most of the time, so there isn’t much to it. I think I’ll cheat a bit and make this reply to your blog part of my blog so I’ll have three entries. XD
I stumbled across this blog for irrelevant reasons… I had NO IDEA any of this supremacy stuff was going on! Of course, you see it in forums etc but I thought the whole, “we’re better than NTs” thing was a joke - never realised it was serious. Or better than low-functioning autistics - what?
Also I am amazed at this discussion of fluctuation. My social skills and my desire to speak to or even be with people - all this has changed and changed and changed again over the course of my life (I’m 48). At present I am probably as social as I have ever been, and I do dread that ending again. I have never heard this discussed anywhere, ever, and I am pleased and astonished to read this here.
My problem with the whole AS thing is this: you tell people what it is, broadly. Then they say one of two things: either, “Oh, everyone’s like that!” or else, “I think I may have that too.” So you feel like a hypochondriac reading the medical dictionary, or people with one of those “diseases” science can’t test for. Although - come to think of it - the fact that I AM telling people means I probably seem way more capable than I did a few years back…
Oh, I’m rambling. I’ve found this whole “internet community” thing very patchy. Hard to find somewhere that people understand and support each other, and where (to indulge a hobbyhorse of my own) it isn’t 90% parents talking about their children. A place where people are kind. Oh, and don’t mind it when I myself get into a huge rage about nothing much. A community of people who find it hard to get on with other people - oh well! I won’t stop looking though.
Hmm. I think of Gareth and Amy, over at Aspies For Freedom. I may still have an account there; I dunno, I haven’t looked at the site in a year or two. Gareth seemed an Aspie Supremacist. He is just a kid, though. (from my point of view, being dang near 60) Maybe he’ll mellow out some as he gets older.
Leave A Reply