We should keep the separate Asperger's category

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Probably because "autism" is more accurate. It actually describes what's going on--the communication difficulty we all struggle with (aut="self"; meaning a disconnect between self and others)--rather than giving credit to one of several early researchers while shunning others who did just as much work to define autism.

Besides, do you really want to be known as an Ass Burger for the rest of your life? Yeah...

Changing names has never changed stigma anyway. Did the stigma change when "idiot/imbecile/moron" got changed to "mental retardation"? Are people who were "only morons" now stigmatized simply because they are lumped in with the "idiots"? Or would they be stigmatized anyway? I'm betting it made absolutely no difference. What did make a difference was the advocacy efforts of people with MR and their parents, friends, and spouses (why, yes, they do get married). Not that they don't still have a huge long way to go, but there has been progress. Plus, the progress they did make hasn't, for the most part, left behind the 15% of the MR category who are not "mild"; they benefit, too.

Last edited by Callista on 06 Mar 2010, 12:08 pm, edited 1 time in total.

This is a tough subject, because NT's don't understand themselves, much less autism or Asperger Syndrome.

So all they are doing is affixing labels here and there with empirically derived, ignorant diagnostic schemes.

IMO they shouldn't remove the Aspie category because of how it will not help others understand us if we tell them we have "autism".

You can't know one Aspie if you know another one (not really). And you definitely can't know an Aspie if you know a fully autistic individual and vice versa. Each Aspie will have to go to extensive lengths they probably won't be able to pull off to negotiate any disability accommodation they might need.

I can't think of many criteria for declaring a diagnostic label "good" or "bad", but in my opinion, if the diagnostic label will be unhelpful and cause confusion for the individuals so labelled, it's not a good one.

Actually, I have had the most success explaining my AS to people when I say "I'm a bit autistic," or simply, "I have autism," and explaining that autism has been expanded to include people who can talk. People with autistic family members often recognize what I mean right away. I actually got a job that way, once, working at a church where my employer had nine-year-old non-verbal autistic twins, and he hardly had to be told that I liked to work alone in a quiet place doing predictable things.

My nephew who's on the milder end, i.e., active but odd social behaviour (see: AS), is unmistakably autistic in behaviour.

He goes to a class with 30 or so other boys with various ASDs, and you couldn't tell which label which child had just by observing them.

You have a pretty deep knowledge of psychological and neurological disorders, tho, don't you?

It's harder for some of us to communicate our traits in such a way as to have them easily understood and accepted by others.

I constantly get, "You don't look Asperger" or "You don't look autistic" -- even from people who say they know what Asperger and autism is. They apparently expect more than just behavioral traits and think I should be rocking and/or have a rigid facial expression. When I try to communicate what my issues are, I get things like "Oh, most engineers don't have social skills", "That's not a stim, it's a nervous habit", "I can't stand bright lights, either" or "I have to watch what I eat, too". People literally argue with my whole complex of traits and then act offended and judgmental when I don't just drop them on command or act according to their expectations.

I think it's great that you're able to negotiate understanding of your traits so efficiently and simply.

For me, an "autism" diagnostic label would lead to even more problems than I have now trying to communicate/negotiate acceptance.

Maybe I haven't found the right formula/script yet

Dunno. There are a lot of topics around here regarding explaining ASDs to people. I think a good script/formula would be something that is very short (a single sentence without too many clauses), and would tie into something the NT world in general can instinctively understand. You have to remember when you explain it that words don't just have the denotative meaning (dictionary definition) and the connotation (the "mood" of the word); they also carry along the connections of that word to all the concepts it's often found with. Said connections usually determine the connotation.

So, Autism:
Connections: Disability; mutism; savant skills; childhood; distanced from other people; any person they know who has autism; often connected to vaccines; often connected to "inspirational" stories of autistic children. Connected to the idea of being a "victim" of autism.
Connotative meaning: Negative, the same as most disabilities, but includes the fascination of savant skills.

Asperger's is similar:
Connections: Nerds; computer hackers, engineers; antisocial; lack of empathy; cold; intelligent; hopelessly nerdy; occasionally connected to sociopathy or lack of ability to love; occasionally connected to the idea of "not a real diagnosis". Connected to willful distance and alienation rather than victimhood; also connected to drama and attention-seeking.
Connotative meaning: Negative, partly because of the disability connection and partly because of the "antisocial"/"nerdy" connection.

They're both negative. Changing names isn't gonna change that... My best bet, when explaining things to people, is to use the Autism connotations, and then knock out the key factors that represent the worst of the stereotypes--that is, the idea that we're hopeless, silent victims--by mentioning that the spectrum now includes people who can talk.

Thank you very much for this advice, Callista!

I dunno, really, I think the best bet is just to change those stereotypes. If we could get autism to have more of a neutral connotation, then we could stop worrying about the autism=hopeless thing. Maybe, if we connected more realistic ideas to the idea of autism, the connotation would follow.

I agree, both as a person with probable AS and someone who works with ASD kids, both verbal and nonverbal.

I have witnessed a similar thing with epilepsy. I was diagnosed with it when I was 19 years old and was always very up-front about it and called it epilepsy because I was well aware of the stigma/stereotypes. I *still* have to tell people it *only* means the tendency to have seizures and is synonymous with the less-stigmatized "seizure disorder". I can't count the number of ppl who have said "my son/daughter doesn't have *epilepsy*---s/he has a seizure disorder". In 2010! However, more people know that it doesn't in itself mean "mental illness or retardation" now than they did when I was diagnosed. Part of the process of improving things is those of us who *are* verbal educating the general population and de-stigmatizing "autism" for *everyone*, not just those who are verbal or highly intelligent.

~Kate

[quote="ephemerella"]I constantly get, "You don't look Asperger" or "You don't look autistic" -- even from people who say they know what Asperger and autism is. {/quote]

My reflex response to this is "what does a person with Asperger's look like?" Honestly, I don't really "get" that.

~Kate

You might want to consider that they might be correct. There are far more people with Asperger's syndrome who are undiagnosed than who are diagnosed - for every person with the diagnosis, there are about 60 who are undiagnosed. Where you may call a behavior a "stim" because that's what the Asperger's community calls it, undiagnosed aspies may call it a "nervous habit". It's still the same thing. Many engineers - possibly "most", even - likely have undiagnosed Asperger's.

If they are saying things like "I can't stand bright lights, either" or "I have to watch what I eat, too", it seems to me they are accepting your habits, and do not expect you to drop them. Granted some neurotypicals will say "I can't stand bright lights, either" and then turn the lights up, but that gives you the opening to say, "since neither of us likes bright lights, let's leave them down" and turn them down again.

Having Asperger's does not mean you don't have to make adjustments. It just means that you can make a set of adjustments that works for you, rather than trying to act like a neurotypical.

The Asperger's connections are not, overall, negative. "Nerds, computer hackers, and engineers" are all positive connections. "Intelligent" is highly positive. "Alienation rather than victimhood" is at least less negative. "Antisocial" may be a negative connection in high school, but in real life, "minds his own business" is usually seen as a positive.

I don't disagree with what you say, but I think that you're overlooking the other part of my post, where I say people get uncomfortable with me and then upset when I don't bond with them and act different, and when these things that they say they experience too, are things they think I can turn on and off.

Maybe my problem is that I'm not making clear that these traits aren't just characteristics but limiting or hardwired features of my self that I can't turn on and off by choice.

The difference between "geek syndrome" and "Asperger Syndrome" -- I can't choose to be otherwise if I wanted and I can't change traits without a major therapeutic effort or major workaround.

I still am daunted by the additional effort it will take to frame myself as autistic when most of my traits consist of invisible ways I can be disrupted (sensory, dietary & cognitive).

First of all, because Asperger's Syndrome is not a disorder, and should not be included in anything with "disorder" or "disability" in the title.

Secondly, because at this point, I'm unconvinced that some of the things diagnosed as Autism have anything to do with Asperger's. Aspies just think differently from neurotypicals - not worse, just differently - and those differences are easily describable. Aspies take verbal communications more literally, where neurotypicals tend to look for hidden meanings and emotional messages. More generally, aspies use words to communicate, rather than for social reinforcement. These differences are the result of a different way of viewing and interacting with the world, including with other people.

Some cases of autism do seem to be simply extreme forms of Asperger's. The woman with low functioning autism I mentioned in an earlier post would be one such case. On the other hand, it seems like there are a lot of people diagnosed with Autism or Autism Spectrum whose conditions are completely unrelated to Asperger's. For example, something like Asperger's could cause speech delay because of reluctance to talk, but there are plenty of things that could also cause speech delay that are completely unrelated to Asperger's. When I see someone make an appeal to pity that's unrelated to any logical argument, well, that's the exact opposite of the kind of argument an aspie would make.

Lumping aspies in with people who have completely different types of issues - not just a different severity, but a different type - does no favors for anyone. It just results in least common denominator treatment that doesn't recognize our issues. Better would be to tease apart the Autism group into subgroups that actually have some form of cohesion. If some of those then get moved to "Asperger's", great. But some are probably real disorders or disabilities that need to have categories of their own to get proper treatment.

Sorry, I did miss where you talked about their being upset when you don't bond with them. Me, I just skip the bonding activities when I can, and say as little as I can get away with it when I'm forced into those things. I try to make up for it by simply doing good work. I'm sure I miss promotions, but fortunately I work in a field where the actual workers get paid comparably to management.


That part was clear. What I was trying to point out was that you can still make adjustments that don't require you to turn off those features. That was what the example with the guy who says he's sensitive to light but then turns the light up anyway was supposed to do. We can't expect the neurotypicals to make 100% of the adjustments; we have to adjust to them to some extent too.

Edit: oh, maybe you're trying to say that "nervous tics" are something one can turn off, unlike stims. No, they can't be turned off.


I don't think it's a good idea to frame oneself as autistic. The popular conception of autism has little to do with the issues faced with Asperger's.

The diagnostic criteria state that to be diagnosible it has to result in clinically significant impairments- i.e., be disabling.
It's a disorder. Having a disorder doesn't make a person any less of a person or less worthy of life, though.