Monday, August 27, 2007

Time to Deconstruct Autism?

I think a big problem with the current social construct of autism is that it lumps too many things together. It's flawed even without the spectrum, which is one of the most popular criticisms of the current construct of autism. (Some angry "curebie" parents of LFAs often argue that full-blown LFA is the only thing that should properly be called "autism.") No two people in the same diagnostic or broader phenotype category are likely to have the exact same challenges and quirks. They do not all have the same needs. Sometimes they don't even have similar needs.

I think that children who display what are now considered "autistic behaviors" ought to be assessed individually for their sensory, cognitive, and behavioral issues, via tests, observations, and interviews with the parents to report behavior not seen in the lab (e.g. poo-smearing and head-banging). Treatment should then be done in a way that is sensible and realistic and does not violate human rights.

I wonder how many LFAs would improve their most infamous problem behaviors with sensory comforts tailored to their over- and under-sensitivities? How often has this been tried? It would probably be more humane and effective than institutionalization or potentially dangerous quack cures. It might be a bit expensive...but it might be the best hope these children have, besides the "luck of the draw" of growing up. Perhaps institutions could give way to centers for dispensing sensory tests and tools for those with what we now call autism.

If they still don't do well, it might be a good idea to further test these kids for allergies and such.

Problem is, though, we may need to hang on to the "autism spectrum" concept at least to some degree to do this. But perhaps the name could be changed to something accurate and non-degrading that does not mention the dreaded A-word. "Sensory-Cognitive Developmental Challenges" or something like that.

Sunday, August 26, 2007

Mor(e)on IQ

Not long after my last post about intellect and "orders of being," I decided to browse the psych section of a book store while I was out, and what did I find? A highly relevant book called "IQ: A Smart History of a Failed Idea" by Stephen Murdoch.


The forerunners of IQ tests were created by a staunch social Darwinist and father of Eugenics, Francis Galton. Another eugenicist, Henry Goddard, brought the more refined intelligence tests of Binet to the US, and he helped promote mass hysteria about "feeble-minded" people (the euphemism of the day for the mentally retarded), especially the "morons" (mildly retarded), passing for normal, breeding, and filling our jails because their weak minds make them more likely to become criminals. He thought that retarded people should be institutionalized and, though treated nicely, prevented from breeding. Intelligence measurements were also used to restrict immigration so as to keep "feeble minded" people out of our country...and gene pool.

And I haven't even gotten to the chapter about the Nazis yet.

On a more positive note, as long as there have been IQ tests, there have been skeptics of IQ tests.

If you think I'm on an emotionally reactive rebellious tirade, you're right. This is a painful issue for which I've always sought some kind of resolution...usually, reassurance that I was plenty smart and had nothing to worry about. (And there has never been a way to completely reassure me, as there are always people who have done better on IQ tests, in school, and so on.) When I learned at 20 or so, via finding some of my mother's old papers lying around, what my IQ score had been at the age of almost 9, I was devastated. I was not "gifted" after all, as I'd previously assumed and hoped - my score was 120, above average but below the 130 cutoff for giftedness I'd learned about in psychology. (Granted, I actually remember getting nervous on the timed jigsaw puzzle section, and my verbal subscore was just above 130, but I don't have enough of the Normie trait of positive self-delusion to run with the higher subscore or blame my lower one entirely on performance anxiety. I've been a pessimist since childhood.) I was one of the Damned, not one of the Elect. Calvinism is my metaphor of choice because, emotionally, that's what it's always felt like. To be smart was "good" and to be dumb was "bad," in a very absolute and final sense, and either I was born "good" or I was born "bad."

Even though I was never taught about eugenics in school that I can remember - at least not in the formative years - somehow I caught onto the insidious idea that one's intelligence was somehow a measure of one's quality of being, one's overall worth. Issues of quality of being, and the fear that I may have been born without it, are a major source of self-harm for me.

A major reason why I've been so drawn to the world of disability advocacy and acceptance of difference is because it exposes me to anti-hierarchical perspectives. These provide more than just narcissistic fuel for an ego that at least wants to be good and just and fair in spirit if it can't be smart or great or special. They provide something that could help me heal some childhood wounds and build basic self-esteem regardless of how I "measure up."

My current experimental viewpoint is to view what's normally seen as "intellect" as a matter of specific skills and interests that, like any other skills and interests, are just neutral tratits and not some magical measure of human worth and worthiness. People who "aren't very bright" just don't have a lot of academic-type skills or interests. And there's no more point in envying people who have academic skills or interests that are beyond mine in a related area than there is of envying soccer fanatics. They're not "better people" than I am, they're just different.

That's probably the hardest part: letting go of the fear of being a "lesser person" than those who skipped grades or could win Jeopardy or who have studied and aced more academic subjects than I have. As a pessimist, it's easy to obliterate the notion of classes of being below my own and consider myself a human equal to the slow, but not so easy to obliterate the notion of classes of being above my own and consider myself a human equal to the swift. But if all humans are equally deserving of basic dignity, that means all humans. I don't think it's possible, at least not the way I tend to think of things, to value the smart solely for their smartness without devaluing the dumb solely for their dumbness. The people are to be recognized as people, their skills and interests are to be recognized as skills and interests, and their accomplishments are to be recognized as accomplishments. Nobody is more or less of a person than anybody else. Nobody is undeserving of basic rights, or a chance to pursue, develop, and use their own skills and interests.

Status fear is primal, but neurotic status fear leading to shame and angst is probably taking it too far, delving into self-fulfilling-prophesy territory.

The Illustrious and Mythical Order of Being

I've been reading a lot about disability rights abuses lately, especially in the following locations:

It does seem ridiculous to violate human rights under any circumstances. But it also begs some deep thought about beingness and the basis by which we assign rights. What does it mean to be human? Who gets to decide who and what deserves rights? If I think it's wrong to violate the human rights of people who are unable to communicate or use bathrooms even as adults, then am I not a hypocrite for not being Vegan and fiercely anti-abortion? For if it's hard to tell whether humans are sentient or not and to what degree based on their outward behaviors, couldn't all the animals I like to eat be just as sentient as some humans? And even though embryos can't communicate or breathe or eat independently yet, there's a better chance than not that they will be able to if they are allowed to survive to birth if they can, right?

Every attempt to find some intellectual or physical quality - besides the small portion of the human genome that differs from that of chimpanzees, and the closed breeding circle that defines a distinct species - that "makes us human" has pretty much fallen by the wayside. Complex communication (language), self-awareness, awareness of death and dying, high intelligence, and tool usage have all been found in other animals. So what have people done? They've simply narrowed the meaning of these in order to try to make them human-exclusive again. "Okay, other animals may have complex communication, but it's not language because it doesn't have all the features of human language." (Okay the, are plants not living because they don't have all the features of animal life? Some Buddhist philosophers have traditionally thought so, but modern biology says otherwise.) Or "They use tools, but they're not nearly as inventive as human tools are." Or "They may be able to recognize and seemingly mourn their own dead, but they probably can't anticipate death and dying quite the way we do."

And it isn't just animals whom we've sought ways to exclude and define as a "them," it's also other humans. Humans who were female, from other tribes/ethnicities/nationalities (especially tribes/ethnicities/nationalities unrelated to yours or with which yours waged war), from lower social classes, disabled, or "different" in any way that the society deemed repulsive have all, at some time and place (and sometimes even now), been considered to be a kind of non-human. That is, a "them" who are unworthy of full human rights.

So there's no obvious, undisputable place to draw these kinds of us vs. them lines.

Right now, I practically don't believe in "orders of being" anymore. I don't believe in evolution as a march of progress; it's just a matter of living things stumbling into new niches in an ever-changing biosphere. I don't believe that intelligence is either (a) accurately measurable via any single thing like test scores or academic ability or articulateness in communication or (b) an indication of a higher consciousness or order of being, although I used to strongly believe both of those things and always fear that I was not smart enough and thus not a high enough being. Emotionally, I'm still not over that belief: I still automatically envy people I perceive as "geniuses" or otherwise "smarter than I am" (e.g., people who skipped grades in school) and fear being "stupid" or inadequate before I have a chance to come to my senses.

Since I know how damaging the concept of intelligence as an easy measure of one's "order of being" can be via my direct experience with adopting that concept and beating myself down with it even though almost nobody other than myself has ever called me "stupid," I think it's something that ought to go. "Lack of intelligence" should never be used as an excuse for treating people like throw-away toys. And I don't even like the idea of making fun of people who aren't very interested or talented in so called "intellectual" realms, because there's really no reason to think of them any differently than you'd think of anyone else who just doesn't share your interests or just isn't on your wavelength. Even when aspies do it to the NTs who have discriminated against them, it's still not cool, because it continues to promote this idolization of the "intellect," which I think is in large part socially constructed anyway. (What is considered "intellectual" and why? Is the brain not also in charge of various practical skills and motor skills as well as reading, writing, and arithmetic?)

I don't think we need the amount of competition and hurt and egotism that's perpetuated by the notion of higher and lower orders of being, particularly within the human race. I'm tired of matters of consciousness, sentience, intelligence, and order of being not only being used to promote atrocities, but also inadvertently making even those of us who are as normal as the wall is to the floor feel bad about ourselves and anxious about not being valuable enough due to the quality of our "intellect." I'm not ready to be a Vegan, an anti-abortionist (though I think abortion should be minimized, done as early as possible, and not done eugenically), or a political organizer, at least not yet, but I want to challenge "order of being" assumptions as applied within the population of born members of the human race where and when I see them, especially in myself. I think there's a lot of room for improvement within my own life as I come to believe in a more heartfelt way that human beings are human beings no matter what they do. Yes, even criminals. Defense measures should be taken against them as needed, and if they try to kill you then it's not unethical to kill them in self-defense, but beyond that, well...they're not much different from the rest of us, and systematic indignities on the order of the Stanford Prison Experiment are not necessary to maintain our safety and community integrity.

Thursday, August 23, 2007

psyched out

I stumbled upon this...

The earlier portions made me think about how I always feel I need to "fix myself" before I can move on with life or be happy with myself. I've fallen prey to this psychotherapy culture too, and I'm "normal" and haven't had a psychotherapist since I was 12 or any kind of head doctor for the last 3 years. (I had a neurologist I used to go to for AD/HD treatment.)

Perhaps it will be good for me if I can get back to my roots as a social being and focus more on the joy and meaning of producing things to share with the world than on my own self and its various hang-ups. If there's an obstacle, I can navigate around it, rather than getting obsessed with whether I can fix it for all time and then giving up on everything valuable and perhaps even on value itself when I find that I can't fix it for all time.

After all, if "autism" is orignally supposed to mean being overly withdrawn into the self, then doesn't that mean that we "non-autistics" are supposed to be focused on the world outside the self? Or are we supposed to focus on ourselves so that we have no energy or motivation left to focus on the BS that's happening in the interpersonal world at all levels, or on sharing our joys and interests with others without thinking or caring about whether it has therapeutic value for ourselves?

Even we "normal people" are encouraged to think about ourselves as ill and in need of cures for all our little neurotic hang-ups and bumps on the road of life, apparently so hucksters can exploit us and trick us into thinking that their wares are improving our lives. Before long, there could very well be a DSM diagnosis for everyone. And then the Scientologists will still be there like they are now, hoping to rope people into their own brand of "mental health" fraud (the notion that development in their religion will expel the alien ghosts that cause mental distress from your body) by pointing out the endless absurdity of mainstream psychology. Hucksters and their attempts at convincing people they need something for a happy life that only they can offer just keep proliferating endlessly. Heck, by the time we reach the dystopian age where everyone has a DSM diagnosis, maybe everyone will be a professional huckster as well.

"I'm not just the president of the Psychotherapy Club for Suckers, I'm also a client."

Wednesday, August 22, 2007

Outgrowing autism?

This discussion got me wondering...

How common is it for people to "outgrow" autism?

What counts as "outgrowing?"

How many people who "outgrow" it "grow back into it?"

What is it in the multi-faceted nature of autism that would allow some cases to be magically "outgrown" and others not?

If it means simply not fitting the diagnostic criteria for an ASD anymore, then it's likely that my boyfriend has "outgrown" his Asperger's for the intents and purposes of documenting recoveries or remissions. But he still has some quirks that I don't think can simply be written off as results of a strict upbringing. His sister grew up in the same household and seems to have the same functional attitudes toward social and interpersonal stuff as just about any neurotypical - for instance, the attitudes of moral flexibility and non-excessive fear of angering one or two friends that are mysteriously absent in my boyfriend. Also, she can presumably handle indirect communication from others and not dominate a conversation involving more than 2 people. (At least from my perspective, my bf doesn't seem bad at letting me talk in one-on-one conversations, although he may not let things stay quiet for long, unless I fall asleep in the car or something.)

But do any of these people truly become NT, rather than subclinical neurologically quirky folks or autistics who can pass for NT? If so, then their "autism" may have been a different beast from the kinds that people don't outgrow.

I've sometimes wondered if my bf's childhood sensory integration issues were related somehow to the epilepsy he had in adolsecence, such that he outgrew both once he outgrew the epilepsy. And, no longer having the sensory integration issues, he'd only be autistic by memory. But his attachment to his memories of his autistic younger days might be a lingering sign of autistic cognition, i.e. imprinting on his early impressions of what slimy foods and hot shower water on his head felt like and so feeling he must still avoid these things...or just the kind of thing you can expect from anyone who had a difficult time of anything in their youth, being afraid to revisit whatever it was.

People's brains rewire all the time. It's often called "learning," or in some cases involving young people, "growing up." Maybe some brains just "learn" how to integrate their senses after getting off to a slow start. I think I once read NT tots tend to go through an autistic-like phase of being stuck on detailed rituals and favorite objects. Here is a page on NT toddlers at 18 months...about the time autistic toddlers tend to stop talking and start playing with tiny parts of objects. Apparently, NT babies at this age are highly fond of stimming that would be unacceptable in older children and favorite objects. And 17 month old NTs tend to be finicky eaters kind of like many older Aspies. Hmm. So, at least in a certain age range for most people, the brain rewiring in ways that promote fewer autistic-like behaviors is something that happens naturally.

So maybe there's a kind of developmental course, probably a rare one, that allows for a kid to be diagnosably autistic at one age and then just grow out of it and leave few signs of having ever been autistic...fewer than my boyfriend, who was at the very least on the spectrum (or an "autistic cousin" with strong symptoms) until puberty.

It's all speculation at this point. Even studies can be tricky when it comes to such soft, interdependent variables as one might expect in a range of conditions with somewhat similar outward symptoms that are all lumped together under a social construct.

Would I have a disabled child knowingly?

I may like all these ideas about treating disabled people as equals, and not aborting kids simply because they have disabilities (as opposed to because you don't think you could take care of *any* kid at this point in your life)...but if push came to shove, and I conceived a kid that could be diagnosed in the womb with a disability (probably Down's or some other chromosomal disorder, possibly dwarfism or Siamese twins or other physical problems detectable via ultrasound), would I have the kid anyway?

I'd probably be concerned about my financial resources. Would I be able to insure such a child? Health insurance these days is cruel: if you have a chronic or genetic problem, you're more likely to be on your own, or paying through the roof, than someone less in need of services. That's because health insurance is a for-profit venture; the more they get paid and the less they pay, the better. Knowingly having a kid with a disability when I could have aborted it might lead to insurance companies being reluctant to take me and the kid.

The kid would also get picked on in school, quite likely, or else I'd have to home-school it. Even if I tried my best to treat the kid as a regular person, the kid would get the message of being defective from the outside.

And getting good services for the kid, given the corruption, abuse, and excessive meddling often found in the disability services industry, wouldn't be easy.

But...the thought of having even a normal kid frightens me.

What if the normal kid lies to me and manipulates me? Tantrums and attacks me? Gets into drugs and alcohol as a teenager and drops out of school? Murders a lover or ex-lover out of revenge? Begs me for money all the time? Has serious separation anxiety? Ends up neurotic despite being physically and mentally nondisabled from all reasonable objective external measures, just like I was as a kid? Keeps me up all night?

Any kid could destroy one's sanity and bank account in a flash.

Or, a kid conceived without a disabling condition could unexpectedly acquire one - cerebral palsy from a complicated birth or infant jaundice or a high fever, or paralysis from a sports injury.

I can't really say what I'd do if I were presented with a disabled kid whose disability was identifiable in the womb. At this stage in my life, any kid is a frightening prospect. But, as much as I'd want to think I care and would like to see the world change when it comes to disabilities, I might be scared off from willingly having a substantially disabled child by the problem of health insurance, if nothing else.

But hopefully health insurance and disability services won't stay as crappy as they are now.

Tuesday, August 21, 2007

We are great! We're like this famous person and smarter than everyone else!

Who cares if Einstein was autistic, Edison was AD/HD, or a gazillion great writers were bipolar? If you're autistic, AD/HD, or bipolar, you probably don't have whatever made them famous (including any sheer luck factors not related to their neurology).

Ronald Reagan had Alzheimer's, probably even during his presidency from what I heard. Does that mean that anyone's senile grandma could run a country, due to the Alzheimer's gift of being able to conveniently forget recent self-incriminating information? Hell no.

This isn't to say that all neurological differences are diseases. I just used that example to point out the absurdity of the notion that sharing a vague category of brain functioning, which will play out completely differently for every individual brain affected, made you any closer to the famous people. I have the same neurotype as Paris Hilton (assuming my AD/HD dx was in error). Same gender too. Does that make me like Paris Hilton? God I hope not!

The identification of celebrities of different neurotypes, disabilities, or other groups, I suppose, does help to disprove notions that people of these groups are useless to society.

But...damn. Haven't celebrities gotten enough attention already? Why bask in the reflected glory of famous people instead of enjoy your own life and self as they manifest? Why do you have to achieve something "great" or become famous for your life to have meaning? Nobody wants to be a regular person anymore, except maybe those who are told that they are lesser beings than regular people and believe it. But most of us are and always will be regular people. And I don't want to accept the idea that it's a dire fate, nor do I want to lie to myself and associate with some arbitrary category I can put myself in (personality type being one example of such a category I've used) and its supposed "rarity" or "gifts."

I also don't want to hound myself anymore for not being special enough, and envy people in arbitrary "rare" groups for being special. And I don't wish that fate on anyone else. It's turning the notion that a regular person is a bad thing to be into a self-fulfilling prophesy, precipitating an episode of Closedmindedness.

Regular people can have unique and beautiful experiences, all to themselves: sipping a cup of tea, pursuing a passionate interest, advancing a passionate romance, looking at the rich colors of flowers and leaves. They can have a perspective on life that nobody else has, or will ever have (even if they're afraid to share it for conformity's sake).

Monday, August 20, 2007

Who am I anyway?

I've been browsing around, reading comments on the ABFH's latest entry, particularly bullet's comments, and the "hating autism" blog (which I'm not even sure is serious). I was going to write the following in seriousness...but hey, why bother?

Reform Normal is a joke. Her supposed aspie boyfriend is self-diagnosed, and failed to get a professional diagnosis when he sought one, with the doctor from whom he sought the diagnosis saying he seemed nothing like his Asperger patients. Sure, he reports some symptoms from childhood, but he seems to have grown up to be functionally a normal nerd, more or less, capable of driving and making friends and hugging and just about anything anyone normal can do. He's not on the spectrum. He's just a victim of the popular self-diagnostic fads, and a normal nerd just like Reform Normal.

Reform Normal is also a narcissist. She likes to have her intelligence and "free thinking" validated. That's why she started her blog. But she is not, and never was, a free thinker, except maybe during her neurotic childhood when she told people about her imaginary worlds. She is just jumping onto an obscure and inspiring bandwagon because she herself wants to be obscure and inspirational. Her thoughts are probably thoughts that thousands of people had before.

Reform Normal's whole blog is just a classic case of neurotypical narcissistic regression. She lacks theory of other minds, insight, and independence. She is not sane or sentient.

Don't listen to a word she says. If you do listen to her, you probably just like her because she agrees with you. But that's the deceptive charm of the neurotypical at play. Like any classic neurotypical, she's just sucking up to people and lying to herself to get social validation. Neurotypicals are not even capable of forming true opinions, because their cognition is always tainted by their excessive need for interpersonal validation. They're like lemmings, following each other off cliffs all the time.

musings: diagnosis, normality, and cure

After an internet friend saw some of my bf's answers to questions and thought he sounded normal for someone of his sort of temperament/personality, I've been wondering if my bf is even on the spectrum.

He doesn't seem to have much in the way of sensory integration issues anymore - or at least, I don't run into them in my interactions with him - but he still avoids things he found unpleasant as a child, like hair-washing, fingernail-clipping, and eating foods with textures he dislikes (e.g. any vegetables besides green beans, fresh or cooked spinach, romaine lettuce, and raw carrots), as much as he can.

He also doesn't seem to have much in the way of rules and rituals besides Jewish observances, though he reports having taken a shower and gone to bed at the exact same time everyday as a child, and having been afraid to put a car in reverse when he was learning to drive because the rule was that cars drive forwards.

He's definitely got some unusual cognitive quirks, especially his "binary mind" where social and emotional inputs and outputs are on an all-or-nothing scale, and from what he describes of his childhood he could have been diagnosed as AS or PDD/NOS back then if those categories existed yet. But as an adult, he functions as a normal eccentric, and failed to get diagnosed as on the spectrum when he went to a psychopharmacologist during a low point. (He got diagnosed as depressed.)

But I would expect a psychopharm to underdiagnose anything s/he can't prescribe SSRI's or other popular meds for, and overdiagnose anything s/he can prescribe them for. Because that's what their job is all about - determining if people need drugs.

On the other hand, a specialist might be inclined to overdiagnose, or oversuspect, autism-spectrum conditions or whatever s/he specializes in, because that's the nature of THAT job.

So what's the point of diagnosis at all? Legally securing services? Benefitting from the ADA?

It seems like these are not much help to a lot of people out there, anyway, because official help for anything is expensive and the people responsible for giving help want to make money just like anyone else. Hence the lousy state of health insurance and the thing I recently read about the Army not covering people discharged for hereditary health problems. (I'd link it, but I'm having trouble finding it now.)

Ultimately, I get the impression that "reforming normal" would lead to what a lot of the autism and disability advocates want: to be treated as equals, and accommodated where they need to be without being made to grovel or experience shame. Basically, to not be seen as these Others who are threatening and should be eliminated or assimilated. The "normal" category seems to be, in large part, the category of people that society accepts as they are, sees as fully human. Why must we write off disabled people?

You know what? There are a lot of human traits, likely inherited, that are debilitating and dangerous and should be eliminated to make the human race healthier. Like the tendency to be excessively paranoid about outsiders or "different" people and bully them into compliance, assimilation, or shame. It might have once served a useful evolutionary function, but in today's society, it just causes a lot of war and destruction. So maybe everyone who has ever bullied someone or denied services to a disabled person unless said person proved to be dependent or compliant should be sterilized and institutionalized so they and their genetically defective descendants can no longer harm our society, or be sent to ABA classes where they'll be rewarded with their favorite junk food every time they treat a disabled or nerdy person nicely and have said food withheld from them otherwise. Cure bigotry now! Prevent war and abuse!

Saturday, August 18, 2007

Understanding Closedmindedness

Closedmindedness is one of the most common known mental disorders. It is characterized by an irrational and excessive clinging to a single idea, a limited capacity for imagination when presented with alternative perspectives, and delusions that one's point of view is absolutely correct or that whoever disagrees with the sufferer is suffering from Closedmindedness while the sufferer him/herself is not. Approximately 100% of the population will suffer an episode during the course of a lifetime, although frequency and severity varies widely among individuals. It is roughly equal in prevalence among people of all races, sexes, classes, ages, nationalities, sexual orientations, and neurotypes.

It is popularly believed that some people suffer Closedmindedness more frequently and severely than others - e.g., older people, the poorly educated, and political conservatives. Current research makes no indication that these stereotypes are true: Closedmindedness has been found to be remarkably prevalent in all populations, although political extremists on either end of the spectrum may well be suffering especially severe episodes. Given that the delusion that the sufferer him/herself is unaffected by Closedmindedness while his/her "enemies" are severely affected is a frequent symptom of Closedmindedness, it is likely that those spreading the myth that Closedmindedness is more common among some groups than others are most likely sufferering an episode themselves.

The most severe episodes of Closedmindedness may be accompanied by sociopathic and criminal behavior, e.g. genocide and attempted genocide. Severe, sociopathic Closedmindedness is not as prevalent as the milder forms, but its sufferers can cause great damage to a community, especially if those sufferers happen to be in power and trigger severe episodes in equally powerful or less powerful "enemies" who progress to vengeance.

An episode in one individual is also likely to trigger an episode in another individual with whom the sufferer is arguing or debating. So while it is not caused by a physical infectious agent, Closedmindedness is socially contagious in much the same manner as laughter or a yawn.

There is no known cure for Closedmindedness. Episodes, however, are often temporary and spontaneously end on their own. Effort to maintain and make use of an open mind once an episode of Closedmindedness has remitted may help make recurring episodes less frequent and severe.

Friday, August 17, 2007

Rules and the Prime Directive

So...I've been talking to my bf A LOT to try to figure out what's going on in his poor confused head. And also talking to some friends about the situation, because they often ask questions I didn't think to ask, and then relaying those questions to him.

This seems to be the best model I've worked out so far:

My bf has two kinds of rules: absolute rules and social rules. The absolute rules are things he learned in childhood, be they religious rules like "don't eat pork" and "don't drive on the Sabbath" or rules related to the sensory integration quirks and imprints he had at the time like "I can't eat soup 'cause I don't like the texture" or "hair washing, hair cutting, and nail clipping are unpleasant so I'll procrastinate them as long as I can." Absolute rules are only broken in isolated unusual situations, if at all. I've never seen him try a new food that has a wet or slimy texture; the hair washing, hair cutting, and nail clipping are only done often enough to look reasonably presentable, often with much nagging from his mother re: the hair cutting; Kosher laws are never broken except by accident (and he's lax enough about it to take the risk of eating in a restaurant that isn't Kosher certified, as long as he doesn't eat meat or poultry); and driving on the Sabbath is only done in emergencies like having gotten unexpectedly stuck in traffic on a Friday evening.

The social rules are adaptations to the presence of certain friends or communities in his life, and are generated according to the Prime Directive (which may be closer to an absolute rule): "Don't piss off my friends." He values friends deeply and fears deeply to lose them. So he finds out, as best he can, what a given friend or group of friends likes or doesn't like, and follows the rules to make sure these people stay friends with him. Social rules are changeable when the life situation changes...except, it can often be hard for him to realize when a life situation has changed. He told me the story of how he was given a bedtime at 8:00, and he just kept going to bed at 8:00 for a very long time, well into adolescence and possibly even young adulthood, not thinking that the situation that caused his parents to impose that bedtime might have changed once he was more grown up. (If he were still at home, he could have asked his parents if he could go to bed later now that he was older; if he were already at college, he could have just gone to bed when he felt like it. I don't remember how long he said he followed that rule for.)

"No interfaith dating" turns out to be merely a social rule for my bf, because it was not taught to him at home or in elementary school explicitly. His elementary school was a Jewish private school, but was nominally Conservative and quite open, allowing in many interfaith children. To not lose the tuition from these children's parents, the school decided not to teach about the rule against interfaith dating.

And right now, he's in a really tough situation because it's getting harder and harder for him to obey the Prime Directive now that he has both relatively close religious friends and relatively close secular friends (especially me), and has to straddle two directly opposing social rules to keep all the friends he currently has: give a nod to the "no interfaith dating/marriage" rule with the religious people either by keeping me secret from them or by assuring him that it's not serious and may never become serious, while also maintaining the relationship as it is with me (not dumping me).

Things are okay as they are, and I'm indifferent to marriage anyway, and am pretty sure I don't want children. He's kind of ambivalent about both - could go either way. But now that it's getting hard for him to keep me or his feelings about dating me a secret from his religious friends, and he's finding out that they stand by the no interfaith dating rule strongly. So it might be getting to the point where he can no longer obey the Prime Directive. Somebody or another is gonna get pissed off sometime or another. He'll probably adapt when he needs to, but he'll probably procrastinate the situation as long as he can.

Oh yeah...I just realized that there's at least one other rule that I guess would be a social rule, but is such a general social rule that he cannot really fathom an exception to it unless someone tells him otherwise in a specific situation: in order to make people like you and stay around you, you have to talk to them. He overapplies this rule and ends up talking almost constantly in general social situations, to the point of dominating conversations and driving hapless NTs away because he doesn't shut up long enough for them to think of something to say (maybe he expects them to interrupt and add in their own two cents?) or he obsesses over things like money and diet that they don't like to obsess about themselves.

Thursday, August 16, 2007

My Life with Neurotypicalism: A Reversal

I have neurotypicalism (NT).

Today I am letting you into my world.

I have a mild form of it, though. I'm able to analyze critically and, at least for brief moments, pursue or monologue about interests other than socialization. I'm also able to sometimes notice small details in things. Researchers at the Institute for the Study of the Neurologically Typical say that most people with NT have Normal Personality Disorder (NPD) and vice-versa. (Actually, they say it the other way around, but whatever. Oops - that's an NT "catch phrase." Communication problem.) I don't have Normal Personality Disorder, hence I'm considered "high functioning." I'm glad I'm not low functioning.

NT runs in my family. Everyone in my family has it too. Most of them worse than I do. It was quite a crazy experience growing up with that. Raging emotions everywhere. The littlest things would set each other off. I wasn't set off as much by a lot of them, especially when it came to the rigid rituals of "politeness." I'm lucky I'm not more severely afflicted. I'm not sure if I would be able to function in the world otherwise. I certainly wouldn't have been able to land myself a good autistic boyfriend - I would have driven him absolutely crazy were I lower functioning, having Normal Personality Disorder and other common complications.

The Triad of Impairments, according to the diagnostic criteria published by Institute for the Study of the Neurologically Typical, are social impairments, communicative and imaginative impairments, and restricted interests.

The social criteria don't seem too bad...if they were to diagnose me as a child it would probably be (1) and (3), maybe (4) sort of but I mostly only played with my little sister.

My strongest communication and imagination symptoms from childhood were probably the overuse of imaginative irrelevant activity, and repetition of catch phrases (mostly in adolescence, though I still do it sometimes - e.g., adopting "kick ass!" from South Park as an expression of happiness when something went my way, and using "The Bomb" a lot in high school to refer to something I really liked.) I'd say that I relate to these symptoms more than the social ones, though in traditional Neurotypicalism the social ones usually get more weight - you need two of those, but only one of each of the others.

I have a good deal of problems with limited interests and sensory impairments as well. Especially the lack of awareness of parts of objects. It's really frustrating when you're staring at a set of wallpaper, and you start to "fill in the blanks" in it and see ghosts...I've heard that's common with NT, seeing things that aren't really there, but when I talked to some Aspies about it, they said that it actually didn't sound all that NT...but the really NT part was wondering why the hell I saw different sets of patterns in two sets of wallpaper that looked EXACTLY the same. It took me, like, 20 minutes to figure out that the wallpaper that had different patterns from the rest of it was upside down. It's hard living without that fine detail perception, being only able to see how those pieces of wallpaper were the same.

I also tend not to notice, or care about, small changes in my environment. People with NT are extremely lax and out of it sometimes. We're really off in our own little world, like Temple Grandin says. Most of the people she works with have NT, so she had to study it, to understand why people couldn't see things that were obvious to her and to the animals she worked with.

And stereotyped body turns out NTs do have them, but only in very small amounts and in very limited ways. Anything beyond this, we don't care for, or it weirds us out. The little ones we do, though, we can tune out easily.

My senses are very weak. I'm not sure if they've always been, but they've been that way for a long time. I don't feel the pain of shirt tags most of the time, or fluorescent lights, and I have almost no desire for deep pressure. When there's chaos I can usually deal with it or space out. I have no strong texture preferences for my food. I can eat just about anything as long as I like the taste. My autistic boyfriend, on the other hand, has a much more refined sense of texture and will not eat the foods that just felt wrong to him as a child.

And my Theory of Other Minds isn't always very strong either. My communication breaks down sometimes when I've made a TOOM misjudgment and put myself under stress. My boyfriend is actually very affectionate - he always enjoys it. I'm not as much. Sometimes I get bored of it. But for a long time, I assumed that his wanting it all the time meant that he needed it, and that if I denied him - it was only mild affection after all, like holding hands and cuddling - I would be too cold for him. I also thought that he'd want "more." 'Cause I assumed he'd be like a guy with NT usually is. After a while, cuddling isn't enough for them. But I'm not ready for "more" yet. So I was getting all anxious whenever he wanted to cuddle, and trying to deny him a little but not too much, and I was communicating too indirectly, not saying "NO" when I needed to, just saying "not now" or saying nothing, just making a grunt and a gesture. And then a few minutes later he'd ask again. And what's worse, I even repressed my own need to say NO, thinking that I shouldn't have it because it's not normal for a person to not be open to hugging (but since then, other NTs I've talked to have reassured me that it actually is normal sometimes), and started nagging him about little things instead...acting just like my sister who has a more severe form of NT! I knew then that something was wrong. I talked to people about it, and realized what I needed and that I needed to say it directly. Everything got better after that.

I still wish I had a better TOOM. It's really hard to understand how my boyfriend thinks and feels and senses things. I have to ask him so many questions, and even talk about things to my friends and have them come up with questions to ask him.

Sometimes I wish that I could be cured. Other times, I'm happy to be able to change activities very quickly, experience the "pseudo-simultaneous awareness" described on ISNT as a common comorbidity of neurotypicalism (sometimes it's interesting and helpful to feel like I'm processing two emotions at the same time when I'm really just feeling one and rememberin the otehr), and to be relatively insensitive to nagging irritants like tags, fluorescent lights, different food textures, hair-washing, and nail-clipping.

I think those of us with high-functioning neurotypicalism can contribute a lot to society, if we're given the proper accommodations, like not having too many details to keep track of, and jobs where our flitty attention and dull senses are assets or at least not major deficits. People with low-functioning neurotypicalism, however, are known to be dangerous and violent - bullying, neglecting, and even killing autistic children, and softentimes other neurotypicals as well. It would probably be a good thing if LFN were cured.

Note: this post was inspired by an autistic blogger's rant about autism communities where the constituents buy into the mainstream theories too much and see themselves in terms of their "symptoms."

Treatment vs. Cure

Just read this while perusing AFF:

From what I've read of neurodiversity, they aren't against treating autism. They're all in favor of services, educations (that don't just force the kid to perform NT-ish tricks, but rather to do something meaningful), and tools to help autistics do better in the world.

What they're against is trying to eliminate all autistic traits in people altogether, especially using therapies that are not proven to be able to do so, and not even giving autistic people a chance in life.

Consider the case of treating blindness or deafness, both of which are essentially incurable. They are given educations in alternative communication methods like Braille, sign language, or lipreading; and they are given tools such as canes, service dogs, specialized computers, and text phones to help them get around the missing sense in daily life. Yes, there are hearing aids for deaf people, but they don't work perfectly.

You don't see throngs of parents trying to cure their children's blindness or deafness with a special diet (although some people do benefit from special diets) or with antidotes to poisons for which there's no proof that these poisons are the cause of blindness or deafness. You don't hear of blind children being taught in behaviorism classes to not close their eyes or move their eyes around when talking to another person, lest the other person think the blind person is being evasive. You do sometimes hear of deaf children being taught to always wear their hearing aids, lipread, and speak as best they can to mask their deafness...but a deaf person I know who was raised that way thinks it was a totally dumb idea (no pun intended). Blindness, especially, is hard to mask, and people who have it are allowed - even encouraged - to be open about it, sporting those red-and-white canes and service dogs and dark sunglasses, so that people can accommodate their disabilities.

Why not do the same with autism? Why not just let them show their disabilities and accommodate them with the proper tools? Why try to train them like dogs to make eye contact like a normal person? Why lob onto the most ridiculous theories for why they ended up autistic, and use the most ridiculous quack cures to try to undo their autism?

Perhaps because of the cognitive difficulties of autism, and how they're hyped up by the media. A blind or deaf person is presumed to be able to think and feel like the rest of us. They can generally also take care of themselves physically, missing senses aside - go to the bathroom and so on. But an autistic, especially a low-functioning autistic with many disabilities and sensory processing issues, is presumed oftentimes to not be a sentient being. And even high-functioning autistics can be labeled monsters.

I hope the neurodiversity movement will eventually become believable and visible enough that the general public will start to see and treat autistics as human beings, much as is done with blind people.

Wednesday, August 15, 2007

So now, let's talk about my boyfriend...

I saw him today. We talked about his fear of "judging" the strictly religious people in his life by choosing to live his life differently, which has always puzzled me. But now I think I can follow it.

-In order to explain why he's choosing to live his life differently from how he was raised - he basically goes by old Conservative Jewish rules and restrictions as practiced by his parents, particularly his father, when he was little - he would have to explain why he feels the rules are wrong, or at least, wrong for him.
-He doesn't really feel like there's a strong enough distinction between "wrong" and "wrong for him," nor does he feel that he has the authority to go out and tell them they're "wrong."
-He feels that by judging their way of life to be "wrong," he would hurt them. And although these people are relatively distant from him in his life now, he thinks in terms of the past, when he first became friends with these people, and feels that they are still friends and still important in his life even if he's barely kept in touch with them and they are no longer physically around to tell him what to do. (Sometimes it's good to be a little sociopathic, and be able to make sacrifices when you need to and not make it this big ethical disaster.)

So I asked him about why he doesn't practice religions other than Judaism. Are they wrong simply for him? He said that when two choices are equally valid, he generally goes for the one with the precedent, maintaining the status quo. He only changes when some unusual situation opens him up to it, and he can set a new status quo. That's basically what he did when we started to get emotionally close: an unusual situation established a new status quo with me, and now he wants to maintain that. (And no, I don't think I'm simply a status quo to him. He genuinely enjoys my company. But the status quo factor makes him more passionately insistent on keeping the relationship together. And also, as with the old friends, he wouldn't want to hurt me by choosing them, and their rules that he feels uncomfortable with but follows anyway 'cause he knows no other way, over me.)

So "the problem" of him feeling torn between his upbringing and me hasn't been solved, but at least it makes more sense now.

And it's really sweet that he cares about his old friends so much. So much for him being "inconsiderate" or "autistics lacking empathy." He just doesn't consider in the cold, calculating way that most of us do. "But they're not close friends anymore. And if they disapprove of the way you're living your life, then they're judging you - so screw them."

Regularity: for Autistic People. Part 1: The Normality Fixation

(The title of this entry is a rip off of the "Autism: For Regular People" blog.)

Just read this post by Axinar wondering why neurotypical people get so upset over such little things as wearing inappropriate clothing.

I think I have a good idea as to why.

All human beings, autistic and non-autistic, look to a certain degree of sameness for comfort. This is said to translate for autistics into the widely known "symptom" of a need for routine and ritual, and having an inexplicable "meltdown" if one little detail is out of place.

For neurotypicals, the only difference is what details are focused on as needing to be the same.

For an autistic person, it may be a specifically comforting texture or sight.

For non-autistics, famous for being able to screen out "irrelevant" details as in the famous case of normal people not noticing a gorilla walking onto a basketball court while they're told to pay attention to the ball, it's likely to be a context-specific social custom. Certain things - like common neurotypical stereotypies such as thumb-twiddling, nail-biting, leg-twitching, and pencil-tapping - are filtered out as irrelevant, while other things, like the clothing you wear, seem to always be relevant in a social context.

In an office, you usually dress in ways that other people in the office dress, more or less. NTs get a general sense from subconsciously obserivng others of which patterns are appropriate, inappropriate, and irrelevant. If anyone violates this sense and wears something out of line - like a red dress or an old ratty sweater - then the NTs sense of "sameness" is violated. A "relevant" detail is out of place.

The result: a meltdown. (Or, to put it in traditional NT lingo: an emotional overreaction. Why are autsitics' emotional overreactions compared to nuclear disasters, and ours not?)

The meltdown may take the form of nasty gossip about the person violating the NT's need for routine (venting), and/or trying to restore the routine by putting pressure on the violator not to violate any of the relevant details. Oftentimes, nasty gossip, and subtle changes in behavior around the person, are attempts to pressure the person to figure out what's wrong and change it. Unfortunately, the NT's blindness to "irrelevant" details, and inability most of the time to even imagine them, can lead to some grave mistakes being made, as when an autistic is exposed to extreme sensory overload by the neurotypical's attempt to force him or her to "act normal" at the cost of learning and enjoying what the autistic actually can learn and enjoy.

Now why do people need sameness at all?

Possibly because if something is out of place, our instincts tell us that the cause of that out-of-place-ness may be dangerous: a predator may have moved that blade of grass; the person wearing the strange clothes is an enemy invading our territory; those odd movements could be a sign of disease, or of the person about to do something dangerous. Sameness means that there is no evidence of such an outside threat having come by. Sameness is safe.

So...I think normality is the "classically neurotypical" version of routine and ritual, which is an expression of the basic human need for reassuring sameness, which may come from the instinctive sense that if something's out of place it's likely due to a predator or threat. Hopefully this will help confused autistic people reading this blog to understand us non-autistics and the weird things we do sometimes.

Why I Call Myself Normal

Because, frankly, it's a dime a dozen these days to declare yourself "different" for the chic factor. And it's also something that I'm ordinarily quite tempted to do: I'm attracted to that whole counterculutre chic thing and have a strong narcissistic desire for a distinguished identity.

I'm also trying to emphasize the heterogeneity of the category, so as to weaken it and blow the stereotypes. If a narrow and exclusive definition of "autistic" is problematic, I think a narrow and exclusive definition of "normal' or "neurotypical" is also problematic. In fact, I think a lot of the problem with modern neuro-psycho-politics is that the definition of normal is becoming more and more exclusive (and going too much in the dangerous direction of superficial charm, ignorance as bliss, and materialistic ambition), and salespeople are selling more and more quackery to get more and more people to re-enter the shrinking fold of normalcy.

As I was writing the paragraph above, I had some flashbacks of reading a post or two on ballastexistenz discussing the things people assume about Amanda Baggs (the author of the ballastexistenz blog) based on either her online or her offline presence, or random facts like not speaking. They assume things like she'd been in an institution all her life, that she learned to type before she learned to talk, that she cannot do anything that her speaking autistic friends can't do, etc.

And I thought of the assumptions people might have about me, based on my self-identity as neurotypical or normal:

-I had an easy time in school and was never bullied, and might have even been a bully myself. (I was picked on aplenty.)

-I never required any kind of special services or special attention. (I had shrinks, counsenling, and some kind of affiliation with the special ed program in my school, for unexplained neurotic behavior patterns.)

-I've never been suspected of or diagnosed with any kind of neurodifference. (I was diagnosed with ADD at age 13. But I don't feel ADD really has any substance behind it, and I also don't see symptoms in myself anymore, so I strongly suspect the diagnosis was a mistake, a product of the fad.)

-I am hypersocial. (There are introverted NTs, you know.)

-I am only comfortable with polite, indirect communication. (I've been accused of being too blunt, and socially inept, all my life.)

-I liked hugs and kisses from my family as a kid. (Hated it. And they made fun of me for it too, making it even worse.)

-In my relationship with my Aspie boyfriend, I often feel starved for affection. (Quite the opposite. He's TOO affectionate sometimes.)

I did not have the stereotypical "normal" childhood. When I was 12 or so (sometime before the ADD diagnosis, which I believed in up until about a year or two ago, because there seemed to be nothing else to explain my quirks and problems as a kid), I wondered whether I was normal or crazy, 'cause I seemed to be neither. I was instant messenging with my little sister the other night, showing her this blog and the AS And Their Partners forum, and reading the latter, she said she would describe me as more "NQ" (neuro-questionable or neuro-quirky, neither neurotypical nor autistic) than "NT." I could claim my difference, make a big deal out of it, and wear it as a badge of honor if I wanted to. "Look at me! I'm a nonconformist!"

But the differences that people wear proudly on a regular basis, like being a nerd or a hippie or an artsy person or some relatively rare Myers-Briggs Personality Type, are actually pretty much still normalcy anyway. If non-conformism or countercultureness were truly "abnormal," you wouldn't see the kind of playful intergroup rivalry and narcissistic parading that you do, you'd see widespread, blatant, volatile prejudice and fear. People would react to these normal people who reject the "normal" label in much the same way they react to people with mental retardation or other obvious neurological disabilities, or people with birth defects, dwarfism, or other physical deformities. Only very sheltered people would react to the purple-haired chain-wearing pierced-nosed teenage punk in a way comparable to how they'd react to people with physical and neurological disabilities.

So there's no way out of the fact that I'm normal. I might as well embrace the label. And to be honest, I probably wouldn't want a way out of it either. Being able to fit in and obey the social norms to a safe degree and fly under the radar makes life a lot easier. I may want to parade my nerdiness every now and then or share some of my minor eccentricities like my love of hot humid evenings, but whenever I felt like I'd REALLY be considered "screwed-up" if I shared something, I've tended to hold back until I overcame that fear. Yes, I actually *like* having the "normal" shell to hide in. I am a conformist when it suits me to be one, instinctively making use of my "normal privilege."

So now, it's time to narcissistically parade my utter lack of difference.

Aspie-quiz results, old version:
AS: 48
NT: 132

Newest version:
AS: 49
NT: 151

Look at Me! I'm a flaming Normie!

Tuesday, August 14, 2007

What's it like to be neurotypical?

It's not having to think about what it's like to be neurotypical. Unless you want to, just for fun. (I ripped this off from an ethnic diversity skit I saw in college, where at the end, the white person said, "What it means to be white is not having to think about what it means to be white.")

It's not even having to hear of the word neurotypical unless you end up with important autistics in your life.

It's being able to laugh at all the NT jokes on autistic websites and knowing that you don't fit all the stereotypes, while not having to worry about an autistic boss, in-law, friend, or family member assuming that you must not be capable of thinking rationally or speaking honestly because you're neurotypical, or saying in all seriousness, "You can't be neurotypical! You can hold an intelligent conversation and don't have to buy all the latest fashions."

It's wondering why your aspie boyfriend drives some of your relatives crazy, becuase you don't have to think about all the nonverbal cues and tokens of politeness that your relatives are automatically looking for and not finding. You seem to get along just fine with them...well, ok, not perfectly, but you don't seem to annoy them as much as he does.

It's being able to wear clothes with tags (well, most of the time - some tags do grate), work under fluorescent lights, eat foods of any texture, wash your hair, clip your nails, and sleep with no blanket on in the summer, all comfortably.

It's being able to fidget without it being called some specialized term which sounds like a euphemism for fidgeting with one's own unmentionables, have a passionate interest without it being called a "perseveration," participate in classes and activities without them being called "therapies," and appreciate the small beautiful things in life without being accused of being unable to see the big picture.

It's being unable to claim some glorified label that wins you nerd status points...but gleefully being able to glorify that label without realizing its full implications.

It's actually enjoying chattering about the weather with an acquaintance for a few minutes.

It's being able to let a minor conflict turn into a fascinating conversation with your Aspie boyfriend about how your minds work differently from each other, and to wonder what it would be like to think and feel the way he does, and be eager to apply this information to resolve the conflict...while your relatives still attribute most of their conflicts with him to his being spoiled and rude.

It's not having people wonder if you're biologically incapable of loving someone.

It's not seeing people like you being described in the media as an alien, ghostly, pitiful, or unsentient being, or their neurological status mentioned in news reports about crime except when a neighbor comments, "He was such a nice, friendly person. I never expected this of him."

It's seeing everyone who commits a crime being labeled "evil" and "a monster," so even if they showed no introversion, eccentricities, or signs of so-called mental disorders, you can reassure yourself - if you want to - that the criminal is not like you and that nobody has to worry about you or someone like you committing a crime.

It's living in your own little world just as much as any autistic does, without people making a big deal out of it.

It's reading in a popular neuropsych book about the prevalence of people lying to themselves, and automatically thinking of yourself as an exception, and then reading that statistics say most people think they're exceptions. And then deciding that if you do lie to yourself constantly, you're probably so deeply unaware of it that you'll probably never be able to figure out the truth anyway. And then wanting to figure out the truth because you still want to be an exception.

The Angry Wives' Club

The most prominent NT opinions on autism in general are spread by mainstream psychology and by desperate and frustrated parents who buy into the notion that autism is a dire disease that should be cured by whatever means imaginable.

In my sub-sphere, the world of NTs in romantic relationships with autists, the most prominent voice is the Angry Wife, exemplified by the average member of the infamous "AS Partners" forum. From what I gather, you pretty much have to be an angry NT wife to join and for your posts to be published: they screen newbies heavily to keep out trolling and unsupportive posting (some people have reported trying to give them a piece of their minds and getting censored), and they only allow the NTs to join. With some of the things they say, I can see why they're so infamous. Aspies as Dementors? (What if these wives themselves are the Dementors who have sucked the souls out of their Aspies, hence the extreme withdrawal and lack of emotional reciprocity they complain about?) All AS/NT marriages end in divorce? (Who doesn't fall out of love these days? And those that don't have to put some work into maintaining love.) Only they exist? (Do the husbands only exist to the wives as someone to blame?)

Angry wives aren't just on the Internet, either. Books like Aspergers In Love and An Asperger Marriage also tend to have a bit of a bad reputation among Aspies. My boyfriend has the "Aspergers in Love" book along with a few other autism-related books, but he never reads them. I flipped through "Aspergers In Love" and it didn't have much I could relate to in my relationship, with all the NTs being extreme NTs and the Aspies being extreme AS.

So where are the NTs who still love their Aspie partners, and don't believe that the stereotypical broken marriage is all that's left?

AS And Their Partners is a decent place to go. Unlike the angry wives' club with a similar name but a very different philosophy, it is open to both Aspies and NTs, is led primarily by Aspies in happy relationships with NTs, and takes a positive, egalitarian stance toward relationships in which one or both partners have Asperger's. People share adventures and tips on how to handle some of the problems that crop up. Unfortunately, the only section that's open to public view is the introduction section, where quite a few people come in introducing themselves with rants about their relationship, such that the public face of the forum tends to inadvertently promote the Angry Wife stereotype. (An Aspie online friend read some of the newbie posts, and thought AS And Their Partners was an angry wives' club and mistook it for AS Partners.)

NTs with positive attitudes can also be spotted on pro-neurodiversity AS forums that are open to NT allies, such as Aspies for Freedom and Wrong Planet. But given that these places are chiefly Aspie-oriented, the NT voices there might be a little harder to find than on AS and Partners, which caters explicitly to both Aspies and NTs.

Many of the pro-neurodiversity parents are probably also in loving AS/NT relationships, but as parents tend to do, they may talk more about their children than their marriage.

Monday, August 13, 2007

"I Wish I Were Special"

I read this movie review of "Ratatouille" (a movie I have not seen) one day, which included a blurb about "The Incredibles," a movie I had seen:

"He [Bird, the director] communicates an idea that all people are not necessarily created equal in regards to the things they may naturally be good at (indeed, they may each be naturally good at different things). The Incredibles showed this by contrasting the superheroes' amazing and varying inborn abilities against those of its villain, Syndrome. He had no super powers but wanted to become a superhero; bitterness at not being able to accept not having powers leads him to become a villain."

I also read somewhere that day that it was typical in stories for special people to want to be normal, and normal people to want to be special.

Now, Syndrome may not have had superpowers, but he had a talent that, I would say, surpassed those of any superhero: he was a genius engineer, building machinery that mimicked superpowers since he was just a child. As a young adult, he'd managed, with funding from the government, to design a robo-monster so powerful that it could kill any individual superhero that dared challenge it...but, as the good guys must always win in those family films, not a whole team of them such as the Incredible family.

I've been a little bit like the young Syndrome when it came to my attitude toward autistics, especially the so-called "high functioning" ones (though my readings of neurodiversity sites and blogs indicate that functioning levels are an iffy concept, as the abilities of individual autistics shift and drift over time. My boyfriend has experienced some changes - generally towards the NT simulation direction, gaining some sociability and losing some intensity of focus, according to his own self-reports.) Autistic people often have incredible focus, sometimes to the point of savant skills, and an unusual and precise way of seeing the world. They also have the status of being "unique" in a socially recognized and substantial way. Since I'm already not the most charming and sociable person in the world anyway, and already have analytical tendencies, I've sometimes wished I were autistic, so I could gain the "superpowers" without losing all that much in the way of traditional non-autistic strengths 'cause I didn't have that much of them anyway. (Of course, I assumed then that non-autistic strengths were primarily in the social realm. Not until my recent long discussions about emotionally charged issues with my Aspie BF did I realize that there were other non-autistic strengths that I did have in reasonable quantities, and I'm thinking now that I would in fact like to keep them.) I've also lamented being "normal" in general, equating it to ordinary, redundant, and ultimately valueless. Even as a kid, I used to complain that I wished I were a genius.

Over time, my envy of autism has faded (although it was on and off for a while and could relapse for all I know), but every now and then I still wish I were special and lament my ordinariness.

But it goes to show how the proverbial grass is always greener when I hear my boyfriend talking about how he does things or would consider doing things because he wants to be "normal" and to "beat the Asperger's." Apparently he values the social acceptance of fitting in, and coming from a rather conservative religious background, he hasn't had the kind of exposure I've had to the glorification of uniqueness and difference and "being yourself." Or if he has had it, then it didn't hit him during that critical imprinting phase in his life (childhood and early adolescence). He often thinks of the world quite directly in terms of concepts, ideas, rules, and people he knew then, and modifies these templates as soon as he gets enough input to do so. This may be a version of the autistic tendency to memorize whole patterns in detail and use them as thought-elements. Anything or anyone that deviates strongly enough from these early patterns is "weird" or "unlike anything he's every seen before."

So it's just like in the stories: the normal person wants to be special and the special person wants to be normal.

So what's the point of normal people - those of us who are close enough to the averages and stereotypes that we can hide under them with relatively little effort?

I don't know. But just because I don't know, doesn't mean that normal people are redunant or worthless. I'm reminded of my little epiphany when I read something - linked from ballastexistenz at the time, I think, though I can no longer find the link there - written by a Down Syndrome self-advocate. She wrote something clear, sentient, and meaningful. I would not judge this person to be worthless or a lesser being. Yet, if anyone is likely to be judged as a lesser being by peole in general, it's someone like her: a "retarded person," physically and cognitively different, or at least you'd probably be able to tell as much in person. So if it would be clearly mistaken to dismiss as a lesser being the "kind" of person who is "normally" dismissed as a lesser being, isn't it also mistaken to dismiss myself as such? How do I know I'm redundant, or valueless? Maybe I haven't come into my own yet. Maybe the concept of value itself is suspect. In any case, if I really want to honor basic human dignity, I'm going to have to honor myself, not reserve for myself - and especially not for "people like me," as they've done nothing to deserve it - some distinguished class of unworthiness.

I wonder what Syndrome could have been like if he'd accepted himself as he was, and actually worked together with or peacefully coexisted with superheroes rather than envying them and wanting to destroy them and take over their niche and outdo them. Could he have used his engineering skills to solve the energy crisis? To build specialized armor for superheroes faced with especially tough villains?

Paranoia and Bias

When venturing into new corners of the Web, or posting certain things, I sometimes experience a bit of anxiety and regret. It happened when I started this blog, too.

What's to be so scared about?

Well...I worried that I would be flamed off the neurodiversity blogosphere because I'm neither an autistic nor the parent of an autistic, and therefore don't belong here. I make my neurological status, connection to autism, and lack of traditional authority clear up front on the home page of this blog, so as to avoid any confusion and alleviate any concerns about me taking anyone's voice away or deluding anyone.

Why was I scared? Largely because I read this.

It's understandable why some people would be paranoid about NTs taking the voice away from autistics. A couple posts on NTs Are Weird talk about how when two people with differences or disabilities go out, the more "normal" looking one is assumed to be the more competent one to handle the money. If people tend to assume that the more "normal" people are more competent in general, then they might flock to the NTs in the movement, especially parents, teachers, doctors, and therapists (i.e., authority figures), or give their voices more weight than is due to them.

However, I get the sense that many people venture into the neurodiversity world primarily to hear the perspectives of the neurodiverse themselves - a perspective neglected or minimized in other spheres of discourse about neurological and psychological issues. That's what originally attracted me to it: to learn about autism from people who have lived the experience.

But even if people concentrate mainly on the perspectives of the neurodiverse thesmelves, that doesn't mean that some voices will not get undue or undeserved weight. When people seek out information and opinions - and I'm no exception to this rule, by any means - they tend to gravitate toward those who already think along the same lines they do. Furthermore, people also have a tendency to misinterpret or edit out or leave out information that does not agree with their preconceived notions. Add the media, influenced by the preconceived notions of society at large, and it gets worse. A lot can still be left unheard as a result, even if people only talk to the neurodiverse.

There's no magical formula to prevent bias and the failure of important information to be properly heard.

And I doubt that an NT talking about autism on the web, who is neither a desperate parent trying every bit of quackery to turn their kid "normal" nor an angry affection-starved wife who doesn't think autistics are capable of loving people, is any serious danger to the neurodiversity cause. No wonder some people in the neurodiversity movement advocate separatism. The most visible non-autistics with opinions on autism are unrelentingly hostile toward autism and autistics, and/or perpetuate dehumanizing views of them. I'd like to see that change. That's why I started this blog.

Considerateness is Relative

I've been reflecting on a case, a while back, where my bf had dropped me off at a bus stop maybe 15 minutes from my apartment on his way to his parents' house for dinner. He'd asked me if this was okay with me, and I said it was. On my way back home from that bus stop, my big sister called (or I called her - don't remember which). I had plans to meet her for dinner later on. I told her that I was walking home from the bus stop that my bf had dropped me off at. She was complaining about it: "He dropped you off at a bus stop? How inconsiderate! He should have taken you home."

"But he asked me if it was okay, and I agreed to it," I told her back. (Well, something along those lines. No exact quotes in any of the conversation recalled here.)

Seriously, he did consider my feelings. He asked me if it was okay. If I really wanted to be driven straight to my apartment, I would have told him so, and in all probability he would have done it. But I didn't mind a short walk.

So what would have been "considerateness" on his part, if asking me if it was ok with me was not? Assuming that I was a spoiled selfish princess who, even if I said it was okay for him not to drive me home, would have bitched if he didn't, because I figured he should know what I want and that I would avoid direct communication because it's rude not to thinly disguise your selfishness? Why can't we just openly accept that people have self-interest, and express it directly?

Dang. Spock's right. Humans are highly illogical.

(I hope I'm not painting too negative a picture of my older sister. She is not some stereotypical ignorant jerk. She knows a few basics about autism, and that some things just aren't easy for my boyfriend. And although she sometimes has a hard time being around him - it's common for certain people to both overwhelm and be overwhelmed by my AS boyfriend - she does her best to accept him and be around him, 'cause she knows that I care about him and that he treats me right. But she just has expectations in social situations that I don't, and that particular reaction just happened to be a good nucleus for calling out the arbitrariness and senselessness of certain kinds of expectations that are common in society, like the dance of "considerateness" or "politeness." Why is direct expression of self-interest taboo? Why should people assume indirectly expressed self-interest in everyone, when maybe sometimes people genuinely don't mind accommodating others or not insisting that others accommodate them?)

What's considered rude to one person isn't necessarily rude to another person. My bf considers my needs plenty, as long as I make them clear. He doesn't refuse to consider them because they don't make sense to him; he just does what he can to accommodate me. In my view, being inconsiderate would be refusing to honor my strong wants and needs at all, particularly after I have expressed them clearly. My bf doesn't do that, at least not on a regular basis.

Sunday, August 12, 2007

Current Relationship Adventures

I've written a lot already, but the starter package of my blog would not be complete without some tales from my relationship with my AS boyfriend.

It's an adventure for both of us, as we are only each other's second significant others and the first since high school (and our high school relationships weren't as deep), and both of us have a lot to learn about love and ourselves.

The latest episode in the adventure involves the clashing of my boyfriend's religious upbringing and AS-related cognitive quirks with the need to make one of the biggest decisions of his life: what level he wants to observe Judaism at, and whether he's willing to risk losing ties to more observant friends by continuing to maintain and deepen his relationship with me and live his life in a way that goes against some of the oldest rules he's been taught.

All his life, he's valued community and hard-earned (or hard-maintained) social acceptance within it. He was raised Jewish, with a fairly strong level of observance taught to him in childhood and adolescence. As an adult, he can see a lot of the logic behind some of the rules he was taught, yet thinks that they are not the only way to obey the spirit of Jewish law and obtain the benefits. However, he has a hard time breaking many of these rules that seem unnecessary, for fear of social rejection and that vague but powerful sense that "bad things will happen." It's also not easy for him to uproot himself from past connections and contexts, such as synagogue communities and service styles he's comfortable with. Changes like these are no trivial matter for an Aspie.

So all his life, he's managed to slowly drift away from some of the stricter religious circles, while at the same time making an effort not to offend them and cut off completely from them, because he is afraid he will hurt them, and he doesn't have the dangerously abusable but sometimes useful NT ability to dismiss certain emotional or ethical problems by appealing to perspective and scale. ("It's only a minor slight. It wouldn't be a major slight in my eyes if they did it to me. They'll get over it. If they judge me, it's their problem." This is how we NTs would tend to think...or think we would a situation like his.) Oftentimes, his emotions and the emotions of others, according to him, register as a binary all-or-nothing output of "positive" or "negative," so if people are a little bit disappointed with his choices, he can't tell that very well from having deeply hurt them; all he can see is "I caused a negative emotion in them. That's bad."

He sat on the fence reluctantly but with reasonable stability, maintaining the status quo and reasonable contninuance of his social acceptance and community involvement...until late last summer and early last fall, where we opened up to each other to the point where, by November, we figured we might as well call ourselves "dating" 'cause that's how most people would probably see us.

And that meant he was breaking a very big rule: don't seek romance outside the Jewish community. He bent it a bit too far.

He's been trying to maintain the status quo for a while by keeping me secret from his most religious friends (generally more distant friends - the closer friends and family are tolerant), but more and more that's getting harder for him to do. I'm a major part of his life now. He's going to want to mention me more often in general, or to mention me by accident within earshot of religious folks, or bring me to events where the religious folks will start to gossip. He's done a bit of this already. The results, though, were not especially promising: the religious people are not all tolerant and supportive of him making the choice to pursue a relationship with a Gentile.

So he can't sit on the fence much longer. He has to face the risk of rejection to stay with me, or lose his connection with me to easily remain on good terms with as many Jewish friends as possible. He has to finally work through what it is he wants, besides simply not to hurt or be hurt. His parents have been waiting for him to start making such decisions. His therapists want to see it happen too. But he's scared and confused.

And I'm not always the world's most supportive listener. I tend to push him a bit too hard sometimes, trying desperately to see if I can help him reason his way into putting hope in the social safety net he has among the more tolerant people in his life (he says they don't quite make a "critical mass" yet), or to see why most of us do not see anything immoral in choosing to live by beliefs and philosophies that a few people you know might disapprove of. I'm reading a book on listening, and I realize that I'm listening poorly in these situations much as he is when I vent about my non-relationship-related issues: I'm giving advice he may not be ready for, invalidating his perspective, and focusing on my anxiety rather than his. (Naturally, I'm anxious about the possibility that he might dump me so as to restore the old social status quo, but he wasn't entirely happy with it anyway and has reassured me many times that he really wants to stay with me.)

So here, he gets to learn about making decisions and clarifying his own feelings, and I get to learn about how to be supportive and avoid invalidation of the other (which is intricately tied to invalidation of the self).

It can be frustrating not being able to have perfect communication of one another's perspectives. It's frustrating to have trouble imagining how the other will react due to unusual cognitive style differences. But learning to stretch the imagination and relate to other people is good. Even the frustration doesn't register as all bad, because it's a sign of passion on my part. It's not easy for me to feel passion these days.

Eccentric NT

The advantage of not being your stereotypical flaming neurotypical woman is that it's easier for me to appreciate the kind of love an AS boyfriend has to offer, without being repulsed by the quirks. I've sometimes wondered why my boyfriend, an obviously sweet and ethical guy, had so little luck with women.

The disadvantage is that I don't have very much in common with other NT women in relationships with AS men, so can't really establish rapport with them or help them easily.

I'd looked into participating in a local group for the NT romantic partners of AS adults. I was turned down for it because I didn't fit the typical demographic: I wasn't nearly as old or as experienced in my relationship as the others involved in the group. They were all married 50-somethings, and I'm a single 20-something.

But the leader of the group, a therapist who deals a lot with AS issues, also noted that I have a few things in common with Aspies. I'm not as "emotional" in relationships as your typical non-AS woman, I have certain limits to physical affection (didn't like hugs as a child, still don't like kisses, and can't hug or touch indefinitely without it feeling boring or like eating another spoonful of dessert after I'm stuffed - the pleasure wears off), and, well, I'm nerdy, to summarize the rest of it. :)

These things have always puzzled me myself. Why have I always felt like I'm kind of like people with social learning disabilities, yet never was diagnosable with anything but the ubiquitous ADD, which now I suspect may have been a mistake?

Rejecting my adolescent ADD diagnosis, and having been out of treatment for it for a few years before I decided that I probably never had ADD because I don't seem to struggle with the issues as such now (I struggle with "normal" issues), I could be one of the last remaining "eccentric normal people," a dying breed with the proliferation of neuropsychiatric "disorders." And even then, because I got that ADD diagnosis once, my status as a "normal" is not quite pure.

There was an advantage to the concept of "eccentric" that has been lost with the gain in knowledge of neurological differences and their various forms: the recognition and acceptance of these people as not necessarily abnormal, in the pejorative sense.

The concept of "normalcy" is often understood as a version of the general, trans-cultural category of "our own kind: the group of people we try to relate to as worthy to care about and understand and empathize with. " The more people we leave out of this category of basic humanity, the less we're practicing our potential for empathy and interpersonal creativity.
Ideally, it's important to understand the neurological diversities as a way of relating to the people who have them, yet at the same time, labeling them as "abnormal" is harmful. So if we label them as "normal" and ignore their differences, we invalidate them and fail to understand them; but if we label them as "abnormal" and try to fix them, we also invalidate them and fail to understand them. More people need to see beyond this polarity...and polarities in general, but I won't get into that.

Popular Conceptions of "Mental Disorder" Impair NT Development

It isn't just the "neurodiverse" who are being held back by the view that they all have "diseases" that must be "cured" in order for them to live fulfilling lives.

The shrinking of the category of "normal" to an increasingly unattainable ideal is bad for the development of the full strengths of neurotypicals, too.

Compared to autistics, neurotypicals are supposed to be good at seeing "big pictures," changing their routines and habits, and imagining and working with the minds of other people. And although I don't believe autistics are necessarily as weak in these areas as they're made out to be, and especially not for the reasons they're made out to be ("they're just born that way" rather than "they just see the world differently and nobody realizes what to do about it"), I think that NT cognitive styles really do have potential for a certain flexibility that can be put to many great uses. The adaptability of modern humans to ever-changing environmental conditions and social situations is thought to have been essential to their evolutionary success, and the majority of modern humans, pretty much by definition (though given the way definitons are going, this might change), are neurotypical. Oftentimes if something in nature ends up common, it's because it "works."

But current concepts of "mental disorder" shrink down "normalcy" to a pinpoint and lead to the expectation that someone or another will "treat" or "cure" everyone who isn't "normal." This encourages us normal people to be lazy, thinking, "Oh, we don't need to change, THEY do. THEY have the problem." As a result, we don't change, and our cognitive flexibility that we could be using to work on reaching a mutual understanding with the neurodiverse people next door goes unused. We are not encouraged to stretch our imaginations to peer into very different minds, because those minds don't need to be so different.

And so we become just as inflexible and unempathetic as we claim autsitics are.

And it's not because we're just wired to be that way. Yes, part of our nature does include the capacity to dim or shut off empathy if fierce competition with another human or group of humans becomes necessary or exceptionally advantageous for survival. But another part of our nature, probably just as powerful, allows for the overriding of the nasty side when there is much more of an advantage to cooperation.

A lot of talent, spirit, and even life can be lost if that overriding capacity is underdeveloped. Do we really need all those wars, and all that schoolyard bullying? Would relationships be as strained and short-lived if people were encouraged to try to understand people who think radically differently from themselves?

We NTs don't even all think the same way as one another. We miscommunicate all the time. We fail to see the other's perspective. And that's supposed to be our strength. Focusing on the weaknesses of those who think differently from us, labeling them as disordered and inherently at fault for all their problems and expecting them to be cured, plays against that strength, and instead fortifies costly ego defenses that amplify our weakness of tending to pay too little attention to the hard and relevant facts of reality. How can we see the gorilla in the basketball court when we're too busy trying actively NOT to see things that threaten our ever-so-fragile egos? It's a lose-lose situation. The strengths of all are underdeveloped, and the weaknesses of all are amplified.

Saturday, August 11, 2007

The Relative Invisibility of Autistic Adults

This is something of a political rant.

I found myself wondering why there seems to be much less visibility in the general culture and in official, offline-based resources for autistic-spectrum people for issues related to autistic adults and their relationships than there is for issues related to autistic children and their parents.

You hear all the time about the statistics of 1 in 150 kids being diagnosed with autism, speculation on what causes so many kids to have autism, therapies for kids with autism, and resources for parents of kids with autism. My boyfriend gets a periodical flyer/newsletter from an AS advocacy group, and most of the articles in it are geared toward children and teenagers. Most of the offline groups listed on itswebsite are geared toward children and teenagers and their parents.

I remember going with my boyfriend to a class on adolescent and adult autism-spectrum conditions for therapists and social workers looking to work with autistic-spectrum people. He was serving on a panel in that class. After the panel, the panelists were allowed to interact with people in the class, and I followed my boyfriend along to some of those small discussion groups so they could talk to both of us about the relationship. Some of the people asked us where they could find more information about adult autism, and we directed them to the online forums we knew of.

Why the invisibility of the autistic adults? Why do you have to go to somewhat obscure corners of the web that few non-autistics would hear about or seek out?

I wonder if it's because all these people who sell or buy into the popular model of autism as a disease are hoping to convince themselves and the world that, if you choose the right therapies, your kid will either grow up not to have autism anymore, or not have to rely on strategies to accommodate their autism in their adult relationships. That isn't so, for better or for worse. Quite likely for the better, IMO, because I find that trying to maintain an intimate relationship with an Aspie and understand the issues of adult autism in general has been encouraging me to question things I take for granted, and to become more compassionate, even towards myself. If it is not fair to judge autistic people as being less valuable because of the things they find difficult, how is it fair for me to judge myself as lacking value because I'm "too normal" and thus "not special?"

Some quacks and so on would want to perpetuate the notion that autism rates are indeed exploding rapidly for reasons other than the recent recognition of the broader spectrum - which would require there being many fewer autistic adults than autistic kids - so as to get people to buy into the reasoning behind their "cures," which is that some avoidable or reversible external agent such as mercury in vaccines, pollution, or allergies to increasingly genetically and chemically altered foods is causing all or almsot all autism, and therefore avoiding these agents with their special diets and treatments will cure it.

But perhaps the reasons behind the invisibility are not so dire. Perhaps it's simply a matter of autism being easier to recognize in children than in adults, since autistic adults have often taught themselves coping mechanisms or learned to communicate effectively. Or maybe it's a simple matter of people naturally wanting to invest in the children, who are the nation's future, in genral.

The idealist in me wants to see more people questioning their assumptions and treating and valuing all people as equals, regardless of their neurology. And I think greater visibility of adult autism, in theory, could help with that: it will alert us to the fact that not everyone around us thinks and feels the way we do, and some of the people we encounter in our daily lives could feel and think in ways we usually don't imagine. But the cynic in me says that as long as people don't see easy money or other shortcuts to satisfaction via learning to consider that the people in our daily lives might think and feel in ways we do not expect (and that those differences might be useful), adult autism will stay under the popular radar. Or if it does become more visible, it will be the same miracle cure quick buck angle that we see with childhood autism.

Dreams of an Earthling

I've started this blog because, as the neurotypical girlfriend of an Asperger guy with an interest in neuropsychology and a bit of an idealistic side, and as someone who has actually felt rather disappointed about being a "normal person" (not being special or valuable) and has been looking for ways to accept and value herself without some official excuse to do so, I want to add my voice to the world of autism-spectrum issues and neurodifference.

Most people who are interested in autism and neurodifference issues are either neurodifferent themselves, or are the parents of neurologically quirky children. I am neither. I'm just the girlfriend - a long way from considering marriage, and unlikely to ever want kids - of someone on the autistic spectrum, and a hobby psychology geek. My connection to the issues of the autism spectrum is thus looser, in a way, than those of most people interested in the subject. I'm kind of part of that general public that some of the autistic adults out there seem to be hoping to educate, and so perhaps I can serve to let them know that not everybody who isn't an autistic adult or an openminded parent is an ignorant "curebie."

There also doesn't seem to be as much out there pertaining to peer relationships involving autistic-spectrum adults as there is pertaining to parents and children. I have to wonder why.

I have read some adult autism blogs on and off, and been involved in forums. But here, I'm starting to think that I might want to get more involved in the autism/neurodifference blogging world, as a member of the general public and a romantic partner of an Asperger person who feels that AS/autistic and NT people really are capable of relating to each other as equals, if they use their imaginations, and that the autism spectrum is not a simple matter of the autistic individual having social and communication problems. I think the biggest problem is that neither autistics nor NTs, when uninformed or misinformed, usually even manage to think of where the critical differences lie, because people in general, regardless of their wiring, would default to taking such basics as cognition and perception for granted. And the autism spectrum, at its heart, seems to be primarily a matter of "minority" styles of cognition and perception, from what I've learned so far.

So I want to share what I've learned...and also learn more. I sure hope this won't all become a narcissistic trip and that I won't canonize myself as some kind of saint and not reconsider my own viewpoints. We NTs have to watch out for that kind of behavior.

This blog will primarily consist of stories and issues from my romantic relationship with my AS partner, and various musings and rants on neurodiversity issues and what it means to be normal.