Sunday, September 30, 2007

Regularity for Autistic People, Part 2: Stimming and Your Neurotypical

My "Regularity for Autistic People" posts are intended to explore the common ground between autistics and neurotypicals, with a light-hearted style. As explained in Part 1, the name is a spoof of the name of a blog by an autistic writer.

In Part 1, I explained how being comforted by the routine and familiar may manifest in neurotypicals.

Today, I will describe neurotypical stimming, often called fidgeting, from my inside perspective.

Neurotypical stims or fidgets can take many forms. Some of mine, past and present, include pacing (common), tapping my fingers on walls and fences as I walk down the street, thumb-twiddling (common), clicking clickable pens, gum-chewing (common), squeezing/popping zits and zit-like formations on my skin (a self-injurious and somewhat embarrassing "bad habit"), rubbing/massaging a finger, hand, or foot, twirling or tapping a pen or pencil, and fidgeting with jewelry. I think I even rock a tiny amount sometimes. Other NT stims I've seen include shifting weight back and forth while standing on a train (just saw that one tonight), pencil chewing, and nail biting.

Their purpose, it seems, is to numb out, take the edge off of life, a little like scratching an itch, except the itch is just the diffuse discomfort of living and cannot be specifically scratched. When I perform my fidgets, I either tend to be lost in my thoughts, or just kind of numbed out. Zit popping can be an exception, which often makes me feel a focused anticipation. I can also zone out and think during that though.

NT stims often start subconsciously - we just find ourselves doing them, if that. I can sometimes become aware of the impulse to perform them, though,

Their duration varies. Skin-picking, the most absorbing of them, can last upwards of 10 minutes. Others might last a few seconds, or not even get off the ground because I feel an impulse to start them but then got self-conscious of it and the impulse was too weak to make me proceed.

NT stims tend to increase with greater anxiety, discomfort, or boredom. Though most are "socially acceptable" in their style, they can become socially unacceptable if done to excess, because they are distracting and signal discomfort. The discomfort of another person will often make a neurotypical uncomfortable, even if they are not aware of this fact. (If they are hyper-aware of this fact, they may call thesmelves "empaths.")

If you're autistic and you want your neurotypical to understand stims, maybe you can say something like, "You know how some people chew pen caps and tap their feet? It's kind of like that, but more so, and different, because of the sensory issues." Or...ask them, "How does it feel to be in a rocking chair?" I wouldn't be surprised if rocking chairs were invented by an autistic person, but they really caught on among neurotypicals, attesting to the trans-neurological appeal of stimming.

I went to an Asperger Syndrome conference this weekend, and I didn't get all that much out of it, but one thing that was mentioned was that the partners of Aspies tend to either be the most Aspie-like NTs who tend to have similar temperamental traits to Aspies (like me), or the least Aspie-like NTs who are interested in reaching out to all kinds of people (like the women my boyfriend is usually attracted to). The average NT often can't understand Aspies, and thinks that Aspies should just try harder if they want friends. Perhaps those average NTs would think that if autistic stims are a lot like normal-person fidgets, then maybe the autistic should switch to normal-person fidgets. If that happens...then maybe nothing more can be done.

It's funny...I seem to stim more than my boyfriend, who says he doesn't really seem to have any stims. He reported a couple of them when I first met him, though. Maybe the zoloft reduced the fidgets he did have, which were just about at a neurotypical level. I often like to rub his beard stubble, fidget with his fingers, and rock him back and forth. It can make you wonder who's the real Aspie in our relationship sometimes. ;) But I can read body language more consistently than he can and understand emotions as more than just binary positive or negative ("everything's fine" vs. "OMG it's a disaster") without having to think about it.

People are people, whatever quirks they have. And "lack of quirks" is a quirk in many people are normal in almost every way? Very few, I'd imagine.

Thursday, September 20, 2007


When I'm active in communities centered around personality typing, I find myself wanting to really be whatever type I think fits best at the moment, so I can play the social role of an example of that type and, as such, critique anything that's said about the type and talk about it "from the inside." It gets to the point where I actually kind of take pride in the negative aspects of the type because, if I see them in myself, they're confirmation that I am who I say I am. But if I can't seem to exemplify my supposed type, seeing evidence that I might be another one, I get cranky and restless and uneasy. My social role is gone.

From what I've read, people with ASCs and other neuro-psychological or disability labels go through the same kind of thing sometimes. They're expected to live up to their label, and in order to confirm the label for themselves and for others, they might display and even take pride or comfort in the "negative" aspects.

In fact, in order to get help with the things they need, they may have to play up negatives they don't even have, because disability services are only available oftentimes to those who fit a global disability stereotype. In that sense, it's a lot worse than what I've put myself through with personality typecasting: at least with personality, it's only a game and I can stop playing at any time (were it not for addiction/habit and not wanting to part with the internet friendships I made through it). People with disabilities and neuroquirks, though, have to play their game as a trade-off for survival and well-being.

It can also be a matter of survival for those who make a career out of speaking "from the inside" about their condition. In that case, people have pre-conceived notions that they want parroted back, and if those notions are not parroted back, there are probably going to be a lot of people saying, "Well, then, you must not be what you say you are." At least if the label is neuropsychological. Physical disability such as paralysis or amputation of a major limb should be pretty obvious, and blindness too...but even then, there will probably be radical opponents who will try to accuse the person of faking it.

Being aware of the neurotypical tendency to be good at false empathy but not necessarily as good at real empathy, I won't have the hubris to claim that I can imagine the pain and frustration people go through as a result of typecasting themselves according to social stereotypes of "disability." I don't WANT to imagine it, to be honest. But I know from my own experience that even in the sphere of an unnecessary social "game," if you attach a significant portion of your identity to that game (and attaching one's identity to social games is not unheard of among, e.g., Halo or Warcraft players), typecasting oneself can be a source of lots of negative self-fulfilling prophesies and anxiety over losing a valued social role. If little things like that can get to me, I wouldn't blame neuroquirky and disabled people from getting frustrated, upset, or even crazy about the pressure to typecast themselves and the prevalence of others typecasting themselves.

Wednesday, September 19, 2007

A Passing Thought on Alternative Autism Treatment

If there were even (subtly) botched scientific evidence pointing to the efficacy of miracle cures for autism, why wouldn't mainstream medicine want to capitalize on it? Especially given that autism spectrum conditions are such a "hot" diagnosis these days.

Friday, September 7, 2007

Prejudice is Cultural

I was just reflecting on my last post, about how automatically I use disability-related slurs. And an interesting thought hit me.

Prejudice and discrimination are often not personal matters. They're cultural.

If you confront your average person on the street (APOTS), they'll say, "I'm not prejudiced." (It's a well known fact, by the way, that we normies are often kings and queens of denial. We always think we're better than average, so don't believe a word we say when we assess ourselves. Make your own assessment of us.) Yet, chances are, they use words like "gay," "lame," or "retarded" as insults all the time, even if they have never actually done anything to directly harm a homosexual, mobility impaired, or intellectually disabled person.

"I have nothing against mentally retarded, gay, or handicapped people," the APOTS might protest. "I don't mean it to insult anyone or any group; I just say these words because they're what people say. They're just words."

And their protest might very well be valid: the APOTS may, in fact, harbor no personal resentment against disabled people or homosexual people. They may even treat a gay or disabled person kindly if they met one.

The problem is that the popular words reflect a cultural attitude that needs to be changed.

And since the problem is not personal, it might be harder to get people to look at it from a personal perspective and try to make changes on the personal level.

But there may be an advantage to the fact that it's not personal: rather than accuse individuals of being bigots and triggering their need to defend themselves, we might be able to present them with an opportunity to make a difference, to use their good intentions to make change on the cultural level. After all, almost everyone in this culture is raised to want to help the disabled, and to not want to be a bigot (well, at least when it comes to race and sometimes sex). Now, if more of us normies could be exposed to the ways in which traditional forms of help are NOT helpful, and how our colloquialisms and stereotypes simply reinforce an excessively pessimistic view of disability, and how it might be helpful to disabled people to see them and treat them as equals, maybe things could get somewhere.

Disablism is an ancient prejudice, though. It won't be an easy one to overturn. And as with all prejudices that have been accepted by society in the age of science, some folks claim that disablism is scientifically justified, in a way: it is an evolutionary strategy to keep the tribe strong by weeding out the members who cannot adequately contribute. answer to any scientific argument in favor of prejudice or discrimination is that human beings also have evolved to be able to find creative ways around problems - including the problem of making it so that the disabled can use the abilities they do have to contribute to the tribe. And if they cannot hold jobs or communicate much...well...we can still think of them as contributing via our relationship with them (which may not be reciprocated in the ways we want, but that doesn't make it have to be any less of a relationship), or hope to find untapped abilities they have and a way to bring them out.

More than Words

Any other normies find themselves saying, if only in their heads, "that's retarded" or "that's lame" all the time?

That goes to show just how deep - and acceptable - disablism is in our society.

I just caught myself silently saying these two phrases in response to something I didn't like, and after reading some of the posts from Blogging Against Disablism Day in May, I realized what was going on.

I think I first said to myself "that's retarded" and noticed that it was a disablist slur, so I wanted to use something milder. So I resorted to "that's lame," which I then realized is another disablist slur!

I always make a point these days not to say "that's gay," as I was taught when I was a teenager that homophobic slurs are not acceptable. I had a lesbian, now transgendered, cousin, so the issue was a bit closer to home than, say, questions of physical or cognitive disability. But I probably would have been taught that "gay" as an insult is wrong anyway, just via exposure through the college atmosphere and having gay teachers, classmates, and even a lesbian roommate.

However, nobody has ever taught me the same about "that's retarded," "that's lame," or any other disability-oriented slurs. Well, maybe I had a little bit of awareness that "retarded" was a bit controversial as a pejorative, based on a seventh-grade health class guest speaker talking about mental retardation, but people around me kept using it with less shame or self-awareness than they used "gay." And I never was taught by anyone in the least that "lame" was a prejudiced pejorative that should be avoided.

In fact, I'd practically forgotten that "lame" was a reference to physical disability at all. Its use as a generic negative term is far more common these days...and even as a term for disability it's more often applied to animals. (That's probably because newer and more politically correct words existed to refer to humans with mobility impairments.)

Apparently, prejudice against the disabled is so ancient and acceptable that the insulting meaning of "lame" is not listed in my dictionary (published in 1997) as an offensive or controversial term.

I have mixed feelings about political correctness, given that being overly strict about words has seemed to do little or nothing to change the attitudes that spawned the words in many cases. But I think really reflecting on the words we use and where they come from, if we're so interested, can be part of - but not the exclusive form of - a person's education about the prejudices of self and society. Awareness of words may not help much if you're uninterested in examining and changing attitudes, but if you are interested in examining and changing attitudes, it might be interesting to do.

If "that's lame" and "that's retarded" are ever phased out of our vocabulary, and society's attitudes don't change much, we'll know that the use of softer words was a failure in raising awareness and changing attitudes, when these forbidden insults are replaced by "that's mobility impaired" and "that's intellectually disabled." It would be nice to see a different outcome for once, but that's going to take more than words. It's going to take the total re-humanization of disability. It's going to take seeing disability as normal, as a natural and acceptable part of human diversity. So what if someone needs a wheelchair or help looking after the small things of daily life or both? They can still be people just as much as anyone. (And sometimes we normies aren't particularly good at being people.)

Monday, September 3, 2007

Accommodation vs. Exposure

I came across a discussion on whether a sheltered, accommodating environment leads to failures of adaptability in people with disabilities or quirks, which is quite relevant to a conversation I had with my bf this evening.

See, last night, I'd taken him to a party involving people he didn't know well acting, at times, kind of rowdy. I wasn't expecting him to feel as out of place as he did. But he felt very out of place and withdrew a lot, and was willing to put up with the situation far longer than he was comfortable with. By the time he wasn't responding to my affection anymore, I knew it was time for him to go home, and alerted the hostess.

This afternoon, he had an enjoyable conversation with someone who was on the train with us - someone from socio-economic-educational-religious background similar to his own, who wasn't wild or crazy or rowdy or anything.

And tonight, over dinner, we talked about how he seems to have trouble dealing with people who are different from the kind of people he's used to with his narrow background.

My folks have assessed him as sheltered and spoiled, and think, like one of the commentators in the link above, that his sheltered life impaired his ability to adapt to people.

But I think that my bf's sheltered background actually might have been helpful to him socially.

Why? Well...I think being exposed to a relatively narrow range of "how people behave" gave him enough consistency and stability in social situations that he could figure out at least a little of what was going on, and learn at least a little about how to get along with people that, even if not as generalizable as it could be, is still better than nothing.

Whereas if he'd been exposed to a much more heterogeneous group of people, spanning a variety of classes and subcultures and religions, he might not have even gotten an idea of where to *start* getting along with people. He might have just given up hope on even figuring any of it out.

Given that my bf thinks in terms of binary inputs and outputs, he would have needed some kind of rule that would apply most of the time in order to have any success with making friends. With a homogeneous group (basically Conservative to relatively liberal Orthodox Jews with an upper middle class, highly educated background), any social rule he came up with or learned from his parents or others would have a better chance of applying across people and situations than in a heterogeneous group. The input and output modulation for heterogeneous groups may have had to be too refined from the get-go for my bf to have a chance to figure it out.

So yes, my bf finds it hard to adapt to people for whom the rules he learned for dealing with "his own kind" don't work (and even though I'm not from the same background as him, they happen to work well enough for me in general). But he's fortunate to have been able to learn any rules for dealing with people at all, rather than having just given up on it as a hopelessly chaotic mess, and that those rules in combination with the rest of his personality actually managed to land friends over the years.

I suppose it's possible that he could have adapted rather than given up if he grew up in a less sheltered background, but I don't think it's obvious that the sheltered background in itself hurt him, and it could have been just what the doctor ordered for a person of the so-called broader autistic phenotype. Build confidence and learn basics in an environment in which there is not too much variation and chaos so as to overwhelm and confuse the autistic-type. Then expand on those basics.

Maybe it wouldn't work for building a varied palate...but even in that case, throwing too many different kinds of foods at the person too quickly still might not be wise. They might instinctively cling to the first few foods anyway. Deprivation of comfort might just promote further defensive clinging to a narrow comfort zone.

Autistic-types might not be able to avoid sensory overwhelm ALL the time, but a comfort zone they can retreat to when they need it is probably a good thing. We don't usually take away neurotypical children's blankies or shock them or deprive them of candy we just waved in front of their faces when they suck their thumbs, do we? Some degree of comfort and chaos management is probably necessary. A semi-sheltered life, with some of the hard knocks that come with any life even if it is sheltered, might not be all that bad for an autistic-type.

Saturday, September 1, 2007

Standard vs. Typical

Those are two words I saw when I looked up the dictionary definition of "normal."

Typical implies average or common. But standard implies something else: an ideal that all are expected to strive for. And this ideal is not necessarily what's typical or common, it's what the culture values. And what the culture values is what the powerful find useful to themselves.

Typical children are not necessarily taught that they are fine and perfect as they are. They are taught to meet the standard, the ideal.

Most people will deny that they are typical. Most people consider themselves "better than average" at driving and moral character, which by the definition of average is impossible. If you hang out on Myers-Briggs personality type communities, almost everyone claims to be one of the "rare" introverted intuitive types, and they disdain the allegedly common/average Sensate types.

If you're already a normal person, then normal is not considered a good thing to be. You're supposed to be better than normal; standard, but not typical; exemplifying the traits that are valued within your culture or subculture.

But if you're considered culturally undesirable - not only shy of the standard, but not even very close to typical - then "normal" is billed as a good thing to be. If there's any shot of force-fitting you into typicality, you are strongly encouraged (or if you're a child, perhaps forced) to try it. And if there is no shot at even mere Typicality, never mind the elusive Standard - then oftentimes you are not even considered a sentient being worthy of basic rights, from what I've been reading.

My boyfriend seems to have gotten both messages about normal - that it's best to be atypical in a sense of being "above" average (of course, what's "above" and what's "below" are not absolutes but are defined by the cultural standards), but that it's also desirable to conform to many typical behaviors as much as you realistically can. This is probably true of many of the milder Aspies and other people who have been at least typical in some areas and notably "less than" typical (or markedly deviant from typical in a way that diverges from the ideal Standard) in others. It may have been true of me in my earlier years as well, but after absorbing enough influences from subcultures where certain standards such as beauty and popular interests are disdained as unworthy while the standards of the mind and certain kinds of "uniqueness" are exalted, I almost exclusively associate "normal" with "typical" and see it as a bad thing. (When I'm not philosophizing about it, that is.)

The "normal" that needs to be reformed is the nature of the standards and how the standards are used to essentially dictate who's human and who's not. A society that fails to find value in people with certain types of disabilities is a profoundly uncreative society, not one that follows any kind of inevitable law of nature. Yes, there is something in human nature that facilitates ostracism, exclusion, and dehumanization, but there is also something that facilitates creativity and cooperation. It would be no less natural to relax the standards and look for a place for everyone than to try to push people as close to the standards as possible or else leave them to die and be physically, sexually, and emotionally abused in institutions.