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Why insist you're not autistic?

"Asperger's is a gift; autism is a burden."

"Aspies are smarter."

"I'm different, not disabled."

"Asperger's makes me good at...."

"Aspies are nicer because we don't manipulate people."

"It's kind of like autism, but I'm high-functioning."

"I don't need a cure because I don't have a disability."

"It's not a disorder."

"Aspies are the next step in evolution."

Have you heard those things lately? Maybe even coming out of your own mouth? Regularly? Congratulations--you're prejudiced. Sure, you may say things like this once in a while; and maybe there's some truth to them; but taken together, they evidence a mindset that shows the most insidious kind of prejudice: Prejudice held by a group, against itself.

"But I'm Asperger's! Not autistic!"

And that belief is part of the problem. Asperger's, whether you want to admit it or not, is a kind of autism by every standard imaginable. Even if you require that "real autistics" must have a speech delay or must be developmentally delayed, you still come up with indistinguishable cases in adulthood. It's all autism. It's all problems with speech, problems with social interaction, sensory issues, routines, and special interests. The symptoms are the same. The intensity differs.

Autism is not unique in this respect. Both psychology and neurology recognize many more diagnoses with drastically different severity levels than they recognizes diagnoses which have very little variation. Think about it.

A psychiatrist goes to the hospital to meet with a woman who has depression. She is unable to leave her bed, and has lost most adaptive skills; she speaks in grunts or not at all. Later, he sees a teenager in his outpatient clinic. The sixteen-year-old is a straight-A student, the popular student body president, whose parents brought her in when she admitted to them that she had been thinking about suicide. They both have depression.

A man lives at home with his mother. She provides the pervasive support he needs. He cannot perform basic self-care; and his only communication is to smile when he sees someone he loves, or to shriek in anger when something is bothering him. Another man lives in a little apartment across town and takes the bus to his job as a janitor. He's dating someone he hopes to marry; in his spare time, he plays basketball. Both men have mental retardation.

A four-year-old has difficulty walking; so she wears braces to support her weak ankles. At the same school is another four-year-old who is just learning to use the few movements she can control to operate a communication device mounted on her wheelchair. Both girls have cerebral palsy.

A sixteen-year-old boy's latest triumph is figuring out how to use the toilet by himself; his parents had difficulty teaching him because he could not understand or reply to their speech. He spends most of his spare time turning pebbles over and over in his hands. His classmate, also sixteen, is an awkward boy who excels at math, speaks with an odd cadence, and doesn't understand sarcasm. He spends most of his spare time endlessly playing tetris.
Both boys have autism.

If you still insist that autism, with its varied traits and types of impairment, must be divided into two different things along the lines of Asperger's versus autism, or Asperger's/HFA versus low-functioning autism, then you are not just saying that Asperger's and autism are different things; you're saying that there should be a total paradigm shift in how we diagnose neurological, psychological, and cognitive disorders.

It's not just the few diagnoses I've mentioned above where the same name covers many different levels of impairment; it's practically every diagnosis. ADHD can range from mildly scatterbrained to unable to focus for more than two seconds. TBIs can cause comparatively minor annoyances or require full-time assistance. Epilepsy can be easily controlled by medication, or it can mean multiple seizures every minute despite the best meds you can find. Dyslexia can mean forced illiteracy or simply being a grade level behind in reading.  And it's not like there's some gap in the middle between mild and severe. All these things are continuums. So is autism.

Autism has a highly varied range of expressions with the same theme. It has no clear dividing line between mild and severe; most autistics can be called "high-functioning" by some standard, and simultaneously called "low-functioning" by some other standard, even if only compared to NTs. (That's why these labels, as I've mentioned, are useful for little more than shutting autistics up.) And if you call LFA only the cases where the person cannot use any symbolic communication and has very few adaptive skills, you may have a good definition--but most of your group will not stay in that group; they are children who will grow up to be able to do both at least ot some extent. That's a hallmark of development within a single disorder, not of two separate disorders--and you can't predict who will stay in that group to adulthood (hardly anybody, by the statistics). Asperger's is indistinguishable from the majority of autism cases by adulthood--not from the most severe cases; but then any severe disorder will be distinguishable from any mild disorder, without them being different categories. And adulthood doesn't change the fact that there are not two groups, or three groups, but one group with many infninitesimal variations from one end to the other on any dimension you care to examine.

So what's the origin of this insistent belief that autism isn't the same as Asperger's, despite all evidence to the contrary? Quite simply, it's an illusion caused by prejudice. It's not the sort of hateful prejudice that burns crosses on people's front lawns; it's more like the sneaky sort that takes over in the guise of self-esteem. It happens when people with Asperger's try to accept Asperger's without also accepting disability.

Practically universally, we're born into a society with certain ideas about disability. Disabled people are objects of pity. Helping a disabled person is a mark of character, and the disabled person will be so grateful that you're being so sweet. Disabled people are childlike, especially cognitively disabled people. Disability is severe and obvious; never mild, invisible, or subtle. Disabled people who learn to do things that typical people do are heroic just for living their lives. Living with a disability means you're courageous, because living with a disability is terrible. If I ever get a disability, shoot me. Pull the plug. I don't want to live like that.

So you're five, or fifteen, or fifty; and you've been living in this world for a while; and you can't help but pick up some of this prejudice. My own mom is an occupational therapist who works with disabled children and elderly; and she used to threaten me and my sisters when we did something dangerous with, "You'll sit in a wheelchair for the rest of your life!" Apparently, that was more frightening to her than dying or "putting an eye out" (the more popular injunction against childhood silliness). I still remember my first exposure to autism--"The Secret of Susan", a Baby-Sitters Club book about a stereotypical autistic girl, a nonverbal piano savant who does calendar calculations and, at the end of the book, is sent to an institution where everyone agrees she will be better off.

And then you get this label called "Asperger's."

Suddenly, you're awfully close to that mental stereotype of disability you've been taught all your life--and you don't want to be put into that group of people. The group you're thinking of isn't actually a real group; it's the disabled people you've mentally pictured when the world around you talked about disability; or the disabled people you've seen distorted through that filter. But you don't know that. You just know that you don't fit this stereotype; and therefore, you can't be disabled. You have to distance yourself.

Asperger's is uniquely suited for distancing oneself from the idea of disability. The typical scattered skills, combined with the criterion that you can't have developmental delay, mean that there'll almost always be something where you excel. It's easy to say, "Asperger's makes me good at..." whatever you happen to be good at; and to use that as a reason to justify the idea that you're not disabled. The popular stereotype of autism doesn't help much, either. Autism is a monster that steals away a child's soul. It's someone who sits rocking in a corner all day, spinning the wheels of toy cars. It's someone who can never say, "I love you." And this image of autism automatically evokes the idea of disability. So, with this faulty premise, you reason (also illogically), that because your case is not like the popular image of autism, you must not be disabled.

Asperger's is a gift. (Yes, it is; but it's also a disability.) You can do things that NTs can't. (How does that make you non-disabled?) You can talk. (Yes, and so can most other autistics.) You're high-functioning. (What does that even mean?) You don't need a cure. (Having a disability doesn't change that.) But it's a very, very comfortable trap to fall into. It's the only way to accept yourself as Asperger's (or HFA, or PDD-NOS, or whatever) without also clearing away the old disability prejudices.

This worldview, however, is deeply threatened by the idea that Asperger's, high-functioning autism, low-functioning autism, Kanner's, PDD-NOS, atypical autism--and any other label you may want to stick on awkward, obsessive, communication-impaired people--are actually part of the same category. Suddenly, you are "lumped in" with that awful, threatening mental picture of "autism" you've had ever since you were first exposed to the idea. Your entire idea of your own identity is being threatened. You feel angry. "Hey!" you insist, "I'm not autistic! I'm not like Those People!"

(Those People, of course, being an entirely mental construct. Disability prejudice is many things, but it isn't realistic. It doesn't reflect what it is really like to live with a disability--especially since there are so many different possible experiences that there's no way one simplistic stereotype could ever encompass them all!)

Not that Aspies are the only ones who buy into disability stereotypes. The autistics aren't blameless here, either. While they'll agree they're disabled, and agree that autism is a disability, they refuse to accept that Asperger's is part of the same category. They, too, have found a way to reconcile their own diagnosis with the disability stereotype; but they've done it another way: They've picked out the most positive part of the disability stereotype and tried to put themselves in that category: The "inspirational" disabled person, who lives with so much more pain and tragedy than anybody else, and keeps on truckin' nevertheless. Being part of the same category as Asperger's threatens them because the Asperger's stereotype doesn't overwhelmingly include disability; and they're worried that people will not acknowledge their heroic efforts if suddenly they are "lumped in" with people who don't even have to try hard to do what took them ages to learn. (Works for autism moms, too. My child is more disabled than your child; therefore you have no idea what I'm going through. Etc.)

I'm not blameless myself. When I was first diagnosed, it took me a good long while to realize that Asperger's was, in fact, a disability, and to figure out what that meant to me. Then later on, I was often tempted by the idea that I needed to be "inspirational"--that I needed to get my degree and become a successful engineer in order to justify my existence. I still ricochet between the two alternatives, to this day.

Both groups of people are making one fundamental, mistaken assumption: They take the disability stereotype as axiomatic. The idea that it can be discarded has not occurred to them.

Well, I'm here to tell you that not only can the disability stereotype be discarded--it should be. We don't have to insist we're not disabled; we don't have to justify ourselves by saying we have special skills; we don't have to apologize for our existence and try to be inspirational to make up for it. Looking for permission? Well, you have it. Be yourself. Live your life on your own terms. You don't have to sit in that Disability box and assume it limits your world.

Once the targets of prejudice stop buying into it and start facing society without apology, the days of that prejudicial ideology are numbered. Step out; take risks; and watch it crumble. iweb stats

Comments

The thought that occurs to me is that some things in life are easy to say YES to--yes I can persue this interest, develop that skill, embrace this idealogy, etc. Others are easy to say NO to--no, I won't smoke, no I won't study spanish, no I won't go hangliding, etc. And other things are unclear--do I want to say YES, do I want to say NO? They fall into the "maybe I'll try it" category.

The way that I'd categorize disability for myself is with respect to the things that I really wanted to say YES to, that I tried, and repeatedly failed at because I ran up against some seemingly non-negotiable limit. These are things that many others do and enjoy with ease, but for some reason I can't pull them off. So eventually I came to realize that saying NO to these things made more sense. And that this saying NO liberates more energy for what I can truly say YES to.

It's been an interesting journey, understanding what autism means to me.
Thank you for yet another insightful post, Callista.
Well said. :-)
Very good points.
Which makes me totally worry about the novel I want to write and how to write an awesome character without stereotypes. Stereotypes are rather stupid anyway. I do wish folks would understand more about the autism continuum without the stereotypes.... Many of which are negative and get in the way.

(Anonymous)

I don't speak with an odd cadence, I am a cadenza of odd speech.

As for tetris I read that as tennis, if one perseverates at tennis, one gets to be a star, unless tennis elbow supervenes. Well if it does one is on a spectrum of impairments is one not?

Oh dear I have just gone all autistic, it was listening to Douglas Hurd on the radio, what dun it. I nearly flapped me pants.
Very clever anonymous I could almost have written that myself except for the late realisation that it is not wise to confuse Douglas Hurd with his erstwhile Spitting Images simulacrum.
Umm, I thought that _was_ you. Is your style of comment becoming fashionable, and imitated?
No I was just being post-ironic in my anec-dotage. I have only just discovered how to log in and post as myself here, so anonymous was indeed me :)

Very powerful blog

Very powerful blog.

I was diagnosed with Aspergers in my early forties and actually struggle to accept I have a disability.

I have just had a crazy life, not fitted in (though I tend to hang out with like minds, so most of my friends would be considered Aspie).

I am a speaker and I sometimes speak about autism. I have learned that telling a fairly ordinary story is infinitely more inspiring than trying to be inspirational. People want to know their teenagers will be okay. Meeting a functioning adult shows them a possibility.

Actually, just functioning reasonably well and choosing not to be a victim is inspirational. If I choose to be responsible for everything about me and my differences, I make a huge difference to those around me. If I ask for assistance rather than expect help, I actually empower real people rather than glorify the do good brigade.

I don't think it makes a difference what they decide to call it. I have symptoms congruent with an autism spectrum disorder.

I totally get it that I am on the autistic spectrum and have had a harder time trying to explain the difference between Aspergers and Autism to people (because there really isn't one).

I have a friend who is HFA and we are very similar. Another friend with PDD-NOS who again is very similar. I imagine the difference is in the perception of the doctor and given the same doctor, we would probably have the same diagnosis.

You asked "Why insist you're not autistic?" I would prefer a single diagnosis, it makes it easier to explain.

"Asperger's is a gift; autism is a burden."

I don't see either as a gift, or a burden.

"Aspies are smarter."

I am smarter :-) My brother is smarter than me and has significantly less problems.

"I'm different, not disabled."

I am definitely different.

"Asperger's makes me good at...."

Hiding in cupboards at parties? Come on, the obsessive focus thing is pretty darn useful at times.

"Aspies are nicer because we don't manipulate people."

Yeah, right.

"It's kind of like autism, but I'm high-functioning."

No, it is autism.

"I don't need a cure because I don't have a disability."

If they made a tablet that made autistic people function like NT people I would try it out of curiosity. However observing NT people reveals a lot of meaningless banter for which they seem to have no cure.

"It's not a disorder."

It is an extreme that can be a disorder if the focus of is negative.

"Aspies are the next step in evolution."

I personally like that statement.

However, I think the truth is that transcending our egoic mind is the next step in evolution for humanity and as Aspies process everything with increased sensitivity, there is an opportunity to notice more about both the internal-auditory and visualisation and everything that represents and then to notice everything that they are not.

Now I am rambling :-)

Best wishes

Mark

Re: Very powerful blog

Mark, there is no next step in evolution, evolution is not teleological, the 'next step' in evolution is as likely to be extinction as it is some kind of transformation into HG Well's cerebral Eloi,

Re: Very powerful blog

I thought the Eloi were more silly than cerebral. And were food. I always liked the Morlocks better; they had to be smart enough to keep the machines going. Some of my favorite Morlocks hang out here: http://www.mooj.com/rxdept.htm

Of course my favorite Kipling poem is the one about the Sons of Martha.

(Anonymous)

Told you so

We anti-neurodiversity, anti-ASAN, anti-HUB parents have been telling you this for YEARS. Which is why we've never bought into their claim of being "neurodiverse".

I admit I'm pls'd they have the nerve to say so themselves.

As a parent with 2 children on either end of the spectrum, one who will no longer require services before too much longer, one that always will... I have no issues on the "degrees" of autism. But I will be glad to see the "cutsie" club, the "I'm brilliants", the "I'm self-dx'd" gone once and for all. They claim to speak for all... and they don't.

A diagnosis is for SERVICES... only.

Re: Told you so

You know what, FW2? Fuck you. You make up things that no one on the hub or in neurodiversity has claimed, you troll blogs to post the same things over and over, and you are rude. You are a troll and I am sick of seeing your endlessly repetitive comments in blogs I enjoy greatly. What you seem to not be able to understand at all is that this post, and others like it, are pointing out something absolutely contrary to what you claim to believe: everyone on the autism spectrum, from the people you hate on the hub to the most noncommunicative, institutionalized individual, is autistic. AUTISTIC. We are ALL AUTISTIC. That's what we've been saying all along! It's a spectrum, we have an autism spectrum disorder, it isn't any sort of "cutsie club" or excuse. And I think I can say for all of the members of the hub that we are fucking sick of you!

Re: Told you so

There is a problem here,

This conception of "neurodiversity" is like someone travelling to a pub in Fulham and finding it full of Man U supporters coming down to an away game.

What you see does not represent Man U supporters in general, and what you see in a small number of blogs does not represent what goes on in the name of neurodiversity, the key to understanding what it is about being "diversity"

By characterising a movement thus you are guilty of branding an entire movement by virtue of your observation of a few more noisy and rowdy avatars.

Re: Told you so

Well, then, if we don't represent you, speak up. You're talking as though we're trying to silence people. We'll argue with you 'til we're all blue in the face, sure; but opposing opinions are necessary and welcomed.

If you're talking about non-verbal people, we do have some of those in the neurodiversity movement; also, parents of non-verbal children. Most of us are verbal because most autistics are verbal. By the numbers, and if you count parents as representing their children, we are a pretty fair representation of the spectrum of autism diversity. The only group we don't have members directly representing currently are the autistics who are nonverbal, do not use language, and are institutionalized or so isolated that no one can tell the world about their experiences. And believe me, we are trying to change that.

If you're saying that we only represent autistics who believe it's OK to be autistic, then yes, we do. That's what neurodiversity means. Acceptance. Start your own movement if you don't like it.

Re: Told you so

I think he's replying to FW2...

Re: Told you so

That was the intention,

However in terms of neurodiversity I shall have to say more about the history of it on my blog one of these days. I am afraid that Wikipedia is not an absolutely reliable for a comprehensive history of it, especially in the UK, by reason of which the subject has been so controversial that the original wikipedia article was subject to various hacks and sabotage over the years.

Neurodiversity is a term that certainly does not belong to autism alone.

We cannot be absolutely sure whether it was Judy Singer who first used the word, or whether someone else coined it on the ANI list or the St Johns list way back in the pre history of the internet. One thing is certain, Judy Singers use of it was grounded in disability thery, whatever her status as a 'renegade' might be in these days. I have said something more about it in another post I think regarding the social model of disability.

There have been arguments over the word outside of the autism forums, and indeed arguments before either the hub existed or neurodiversity.com sprang onto the scene.

What really irks me is when people use it as a stick to beat a dog, in the same way an Irish American, might have characterised an Italian American, in internecine rivalry in New York knowing nothing of the real characteristics of fellow immigrants, only the stereotypes deliberatly created.

In our case the assumption made by our adversaries in the blogosphere is that neurodiversity is a bad word, and into it they will dump all there prejudices and dislike, anyone they dislike or who expresses a contrary opinion to them, is by definition neurodiversity, and that is so far from the truth it is ridiculous to perpetuate.

(Anonymous)

Why insist......?

Very thorough, chaoticidealism. I enjoyed reading that very much.

And I second that opinion about fuckwit2. She doesn't even understand what she reads. And she sounds like a very nasty, embittered woman. We've all had enough of her.

Clay

Concur, Amen, What She Said, etc.

You have laid it out "by the numbers", Ma'am: That is, in the form of a well-argued essay considering all parts of the issue in question. I think you're right, too, whatever my opinion is worth.

I mind a comment I made over at http://www.neptunuslex.com a few years ago. I had mentioned being, uh, how to say, uh, well, "on the autistic end of "normal"", tentatively claiming Aspitude. One of the other commenters, a woman with a nonspeaking incontinent kid, came back at me with the "how dare you equate the two?".

IIRC, I told her that there is a continuum between charter subscribers to "People" magazine and people so sensitive that it actually hurts to breathe, and so asocial that humans seem like funny-looking weird objects.
Okay, I understand you're all angry; but this is my blog and if you guys won't be civil here I'm going to start deleting things. I don't care which side you're on; I just think time could be spent a great deal more constructively if we talked about the issues instead of making personal attacks.
You've already deleted my comment, but not Clay's. Yup, this is your space and you are the sole judge and arbiter of what goes on here.
Personal attacks, provoked or not, don't get published, 'cause yeah, this IS my space. Suggestion--get some coffee, relax, etc. and don't let people rile you up so much.

Let me explain...

In autistic politics, I am happy to follow behind Clay, and support him in his efforts.

In general politics, having to do with how badly the Republic is being messed up by people of socialist progressive tendencies, I am the sworn enemy of Clay and people of his ilk.

Feel free to post comments on my blog. I'll not delete them, not being a leftish person.

That would be (my blog) enemiesofthelibrary.blogspot.com

(Anonymous)

Asperger Syndrome... my VERY subjective point of view

I have close people with AS (I have Kanner's) and perhaps what I'm going to say sounds very simplistic, or even just plain wrong, but the main difference I see between us is that people with Asperger's seem to be outgoing COMPARED to people with Kanner's... please, I don't mean to set any stereotypes, it is just the way I see it... relying to MY own experience as someone with KS compared -superficially of course- to people with AS I know personally.

Like I said in the title, it is a VERY subjective point of view and I don't expect anyone to accept it, I might be wrong. Just an opinion. By the way, I know this is an old entrie, but I felt like saying something about this particular subject. It was very interesting to me :)

Re: Asperger Syndrome... my VERY subjective point of view

I think I've already subverted that; I'm one of the least outgoing people I know. Keeping up a relationship is usually done entirely by the other person.

But you may be right in your "on average" comparison; the diagnostic criteria for AS include the stipulation that the individual must be curious about their environment (presumably including people). A withdrawn child would be much more likely to get a Kanner's diagnosis, especially if they were on the borderline.

(Anonymous)

Ian

Lisa,
I like your stuff - I think like you, or at least I think I do. I wrote some stuff about labels too:
http://ianology.wordpress.com/category/autism/
Okay, so this comment is ridiculously late, I am sorry. I've just found your journal because I'm co-organising an asexuality and autism blog carnival and someone commented to me saying "you should totally let this person know!", and I thought it'd be a bit weird to have a total stranger pop up in your inbox going "hey look at our carnival!" (although I've... accidentally just done so... whoops, sorry about that) but I have been reading stuff anyway out of curiosity.

I just wanted to say that I was mentally jumping up and down going "this, this, this!" as someone who was diagnosed with AS but prefers to identify as autistic both because of not wanting to seem to buy into the "I'm Aspie not autistic" bullshit and because of not wanting to be hit by the "Aspies are just a bit socially awkward and have no real problems" stereotypes (I have severe executive dysfunction issues that leave me wondering whether I'll be able to hold a job. Ironically, my social skills are for the most part excellent as spectrum goes.) But overall, I prefer identifying as disabled and consider this a cornerstone of my identity. And that's left me feeling preeetty alienated from the wider autistic spectrum community.

Also, the point about all diagnoses having drastically different severity levels is excellent and one I'll really have to remember.

Aspergers

I have Autism. I'm a people-person and very outgoing. I had language delay. I'm utterly delighted by the chaoticidealism livejournal. At the same time, lot's of people can't believe that I'm Autistic....even after they begin to see the evidence. C'est la vie. Whether I fit a stereotype or not is highly situational.

(Anonymous)

provides access

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