Monday, November 5, 2007

Neurotypicals as Romantic Partners (humor)

Individuals with neurotypicalism have an intense desire for love and companionship, but their sensory and cognitive limitations, their need for indirect, stereotyped, or socially acceptable communication, and the overwhelming intensity of their desires can all lead to difficulties in establishing healthy, stable relationships. An estimated 50-60% of all Neurotypical marriages end in divorce, and countless dating and cohabitation relationships fail to remain stable enough to develop into marriage.

There is some debate over whether Neurotypicals are truly capable of loving an individual, or are only able to act out social rituals and demand emotional displays and support in order to feed their need for a sense of security and connection. Many people, however, report that Neurotypicals can be loyal and caring partners, if their special communication and emotional needs are properly accommodated. Loving a Neurotypical is hard work, but if you can brave it, you may be one of the few people who can provide a genuine version of the care, support, and connection that Neurotypicals crave deep down but often only manage to superficially simulate on the surface in their broken relationships with one another.

Neurotypicals are often unable to understand another individual's need for comfort and space, due to their sensory hypo-sensitivity and strong drive for interpersonal contact. They may overwhelm their partner with excessive physical affection, sexual advances, conversation, and insistence on spending time together. The partner of the Neurotypical may be driven to wits' end trying to meet the Neurotypical's insatiable needs.

Neurotypicals also frequently fail to understand simple actions, such as continuing to stay with the partner and perform basic tasks like sex and house-cleaning, as expressions of true love. The Neurotypical often needs specific, socially popular expressions of love, like fresh flowers, the words "I love you," a surprise date on the anniversary of when the two of you started being romantically involved with one another, and excessive moaning and groaning and flattery during sex, in order to really understand that she or he is loved. To keep your Neurotypical happy, try scheduling a specific time in the day or week, or a specific date such as a birthday or anniversary, on which you will provide a specific token of love, such as flowers, moaning and flattery during sex, or the words "I love you."

Remember, however, that not all Neurotypicals respond equally well to the same stereotyped gestures of love, and that their communication impairments make it difficult at times for them to tell you exactly which gestures make them feel the most loved, because they feel that you should "just know" these things. Experiment with different gestures, and watch the Neurotypical's response.

Neurotypicals can also be extremely moody and fickle, and may respond to one gesture of love one day but not respond to the same gesture of love the next day. Remind your Neurotypical partner that it is okay to ask for what they want, and that their need to ask is not an indication that you do not love them, and do your best to accommodate your Neurotypical partner's needs of the moment.

Also be aware that the primary gesture of love that reassures a Neurotypical the most could be something entirely outside your awareness of what you are doing. Try to open communication with your Neurotypical partner in order to understand what you are doing that makes them feel loved, and how you can do it more often, or whenever the Neurotypical needs it.

Senses, Envy, and Sentience

I just recently found out that one of my internet friends, who does not identify as being on the autistic spectrum, has autistic-like sharp senses. She may have what they call "sensory integration dysfunction," or just be a "highly sensitive person." She may also be on the fringes of the autistic spectrum. I never knew that the numbers in the same column on a touchtone phone did NOT make the same sound until she gave me a link to a touchtone simulator applet to play with. 3, 6, 9, and # all sounded the same to me, and still do on an actual phone, but on the applet, playing adjacent numbers within split seconds of other, I heard the differences between the 9 and #, the 4 and 7, and other adjacent numbers in the same column for the first time.

I immediately envied her as she reported her sensory abilities. I imagine people with sharper senses to have richer and fuller inner lives than I do, assuming all else is effectively equal. What's not to envy about people being able to experience a mountain range in a piece of cloth, and a fireworks display in a flower? Obvious answer: only being able to find one shirt in the world that does not feel like a bed of nails. Still, though, I feel like I'd be willing to trade the ease of finding comfort for a world of richer sensory experience. Rich senses are not in themselves a curse. The predominance of sensory dullards like me, and our assumption that other people's senses are as dull as our own, is what makes rich senses a curse. It's society, not the sensitive person's nervous system, that's the problem.

Intellectually, I know that there's no basis to assume that either richer or poorer senses are correlated with richer or poorer consciousness, any more than there's a basis to assume that higher or lower IQ scores are correlated with richer or poorer consciousness. If sharp senses were a true measure of sentience, then sensory-typical humans would actually be less sentient than most other animals, and it would thus be unethical to perform experiments on rats and ethical to perform experiments on humans. Yet, very few sensory-typical humans with normal self-esteem would doubt their own sentience, or that of others neurologiclaly like themselves.

However, the sentience of those humans who score low on IQ tests or have severe communication problems seems to be doubted all the time, on the basis that they can't perform specific tricks that neuro-typical humans of a certain culture view as measures of a complex mind. But...couldn't they make up in inner worlds of sensory information what they lack in the ability to demonstrate math and logic? Couldn't their simple and repetitive outward behaviors be coupled with an unimaginably complex inner experience? Isn't assuming that people who can't perform certain cognitive tasks are empty inside as unfair and intellectually unfounded as my low-self-esteem-driven assumption that I am emptier inside than my HSP and neuro-atypical friends who have heightened senses?

Perhaps if the world were ruled by technologically adept dogs, sensory acuity would indeed be seen as a chief measure of sentience, and the sensory-typical human would be seen as having a dimmer sentience than a dog and treated almost as an inanimate object. All this neocortex of ours, which we see as having something to do with our sentience, may be viewed by the dogs as redundant brain material, possibly a cooling organ.

I would doubt that, say, a rock has consciousness, but anything with a central nervous system easily could.

Tuesday, October 16, 2007

Former autistics?

The orthodoxy among most of the autism bloggers I tend to read (mostly via lurking the Hub), especially those who identify as autistic themselves, is that people do not stop being autistic when they grow up; they just develop and adapt to their strengths and weaknesses like anyone else does.

This subject is interesting to me, because my boyfriend could probably be considered a "former" autistic, depending on how you define autistic. If it requires diagnosis or diagnosability by a medical professional, then technically speaking my self-diagnosed boyfriend is in all probability a "former" autistic. After all, he did fail to get an official diagnosis from a professional, who told him that he didn't seem like that professional's Asperger patients.

However, despite the degree to which he has obvious autistic traits or the ability to hide them, his history of autistic traits is a huge part of his past, and his past is a huge part of who he is now, especially given his long-standing (but lessening in the last few years) tendency to fixate on it and long for the authoritative certainty, freedom from responsibility, and special interests he enjoyed in childhood. Had he not grown up with autistic traits, he wouldn't be the person he is now. His comfortably-paying career grew out of his childhood passionate interests; his limited palate grew out of his childhood sensory sensitivities; his charming naivete grew out of his past and continuing difficulty catching onto the political games neurotypical people play; and his past and continued persistence at problem-solving and ability to easily think in text made him something of a wizard at pinball, board games, puzzles, and some video games requiring exquisite concentration.

The combination of past and present autistic traits also affects important day-to-day interactions - for instance, he has trouble understanding dark or cynical humor, seeing it as a sign of the person being upset and feeling a need to fix the upset in case it is or will become directed at him, when in fact the other person (usually me) is effectively using the dark humor to handle any negative emotions and doesn't really need anything to be fixed.

So, regardless of whether a person with spectrum traits fits the criteria to be formally diagnosed with a spectrum condition or not, autism is still very much a part of who these people are. So in that sense, autism is for life even if the outward symptoms are not, and well-adjusted and possibly subclinical adults referring to themselves as autistic or aspie are not entirely off-base in doing so. But, technically speaking, people with spectrum traits can lose or experience a great reduction in the strength of a number of those traits over time, and so would never have the "legitimacy" of official diagnosis to help cover their backs if people challenge their authenticity as people who have lived on the spectrum. (Not that that would stop the most adamant "shut this person up" voices from questioning the autistic person's authenticity or right to speak anyway.)

As for some people who seem to "outgrow" their autism while still children, it's possible that what they had was not like most of what is called autism - the kid was misdiagnosed, or had some quirk with short-lived autistic-like qualities that nobody has a name for yet.

And what if a person has a history of autism but is subclinical or nearly so as an adult, and does not want to identify as autistic? They certainly have the freedom to choose what they want to be called. Maybe they will decide later that their history of autism is important to who they are now, but there's probably no use trying to push that decision on them.

And another one gone...

While Autism Hub bloggers are still mourning the loss of their administrator, another blogger, an autistic adult relatively new to the scene, has already been scared away from the often lawless and ruthless land of the Internet. At least she reassures her readers that she's not quitting activism altogether. That's good. But I was looking forward to reading more of her long yet interesting posts on religion, politics, activism, prejudice, and so on. For most people, who probably have no idea whether autistic adults exist outside of institutions or whether they might have actually met one who was able to more or less pass for "normal," the Internet is still the best place to learn about autistic adults, so it sucks that there's one less resource for autistic adults to find on Google. She could have been the one who had that crucial thing in common with a neurotypical reader's autistic relative, friend, or lover that helped the NT to understand and relate to the autistic individual in a new and better way. Or she could have been the one who had that crucial thing in common with an autistic reader that allowed the reader to realize that he or she is autistic and it's okay for him or her to be as he or she is despite what society says.

Monday, October 15, 2007

ND and Me

Joel of "NTs are Weird" just wrote a good post on the nature of the neurodiversity movement: it's not limited to vaccines or even autism.

I consider myself more of a dabbler or contemplater than part of the movement. I don't really feel that I'm even qualified to be part of the movement, in part because I'm neither a parent nor an autistic, just a friend/girlfriend of a gentleman who grew up with Aspie traits and is now probably subclinical as an adult (given that the one time he sought an official diagnosis by an MD, he was diagnosed with depression instead of Asperger's or PDD/NOS). So depending on who you ask, he may not be autistic now and may have never even been autistic. But he is neurologically quirky. As are we all, to some degree. Heck, I was a quirky kid myself, even though they couldn't do better than the ubiquitous "AD/HD" diagnosis-wise. The other reason I don't feel qualified is because, well, all I'm doing is blogging. I'm not out campaigning to local groups or governments to end institutionalization or anything grand and admirable like that.

I do also have an Internet friend on the spectrum, but she lives far away and I've only met her in person twice. Long before either of them, I had a real life friend with nonverbal learning disabilities, which has some social skills issues similar to those of an indivdual on the spectrum. She was the person who got me interested in psychology and neuropsychological conditions in the first place, and the reason I'd heard about adult and non-classical autism before I'd even met my boyfriend. I didn't keep in touch with her after leaving college, though...I've never been good about that kind of thing.

I came into the ND blogosphere with the idea of providing a positive perspective on relationships between people on and off the autistic spectrum, given that I was frustrated with the excessive emphasis on what I call "angry wives' clubs" in the world of adult autism and relationships. I had been turned down from a support group for adults in relationship with autism-spectrum individuals because of my youth and relational inexperience not matching the majority of the group, but I still wanted to share my unique perspective to offset the pessimism set forth by certain books and forums about autism and romance. So my interest naturally lies in the realm of the need for better awareness and accommodation for issues related to neurodiverse adults. Autistic-spectrum conditions and other conditions traditionally diagnosed in childhood are largely ignored in adults - little in the way of information, awareness, and service seems to be out there, and well-adjusted adults like my boyfriend constantly run into the "you seem normal to me, so just stop whining and get with the program" problem.

As I got into blogging, though, I diverged from my original idea into writing almost anything remotely related to society and its expectations regarding conformity and disability issues, and I think it's been a while since I've actually written something related to the issue of adults on the spectrum and relationships.

When I started lurking regularly on the Autism Hub, I noticed two things: (1) even the Hub is heavy on parents debating how to treat children, although the next highest component is the writings of autistic adults themselves, which were what really piqued my interest; and (2) they have no category for "friends of autisitc people." Lately there's also a third thing: the administrator is stepping down due to the petty fighting among parents having gotten too serious and dangerous for him and his family, and so the Hub's future is uncertain. (Aspergian Pride's Cure for Ignorance campaign, whose linkroll I've kept on my sidebar ever since I discovered I'd been added to it, could also be a decent place to look for adult autism blogs, and it has some that aren't even on the Hub...but it's kind of harder to navigate. I noticed another form of the listing on their website, though, where they have the blog links available by category.) And on autism forums open to friends, peers, and the general public but centered on the autistic individuals themselves, which my boyfriend introduced me to long before I knew of the Hub, you're going to need a good self-deprecatory sense of humor (which I thankfully have) to deal with all the joking and non-joking anti-neurotypical sentiment there. So it seems like there's a lot of room for improvement with regard to resources for adults and peers. I found a couple of really good forums on Delphi with the help of my boyfriend doing searches, but alas, their best stuff is private, so there's still not a lot that's both out there and easy to find.

I'm still working on forming my beliefs, positions, and causes. Hell, I hope I always will be, because if I stop refining my beliefs I will be closed minded. But here's my list of things that I would at least nominally support at this point: greater awareness of autism, learning disabilities, and the like in adults; destigmatization of neuropsychological conditions; debunking of the myths of what the autistic mind is like, e.g. lack of empathy and seeing people only as objects (autistic adult blogs are great for this); reasonable accommodations without fanfare (I really liked ABFH's "left handed scissors" post on the issue); and more positive perspectives and resources out there for the friends and partners of people with neuropsychological quirks (so we don't have to live in ignorance and wonder why our peers can't just act as normal as they seem, or else to feel like we're not officially qualified to care about or take interest in the well-being of our friends and people like them). In fact...not only are friends and nonmarried partners likely to feel unqualified to speak out about autism and neurodiversity issues, parents and autistics will sometimes even fight with each other, each saying that the other's category either doesn't belong in the advocacy movement or belongs on the sidelines! That is just pure suckage. Infighting is unlikely to help people get what's best for themselves, their friends, and their loved ones.

Sunday, October 14, 2007

Why do people even need to be normal anyway?

Reading "The Dictionary of Bullshit" by Nick Webb, I saw a reference to "lovably eccentric aristocrats" in an explanation about some political BS about the alleged golden ages of the past. Why, I started to wonder, were aristocrats of the past allowed to be eccentric, while today's middle and lower classes are expected to all be clones of each other?

Then I remembered back to Alfie Kohn's book "No Contest" (which my boyfriend regretted pointing out to me in the bookstore because it solidified my aversion to competitive games, which he likes to play because they're one of the few ways he knows to really engage with people, but I liked the book because it validated my feelings as a lifelong sore loser.) Kohn asserts that the nature of competition promotes conformity: we all have to try to be the best example of the same thing if we want to win the same prize in the same contest.

So insofar as we want to play these commercial games, in this large economy that can apparently afford to willfully expend people as long as the corporate leaders can adequately pad their paychecks (compare to what Sigrun writes about people in old Northern Europe needing everyone to contribute in whatever way they could given their abilities), we have to try to conform to some narrow standard. Society often - but not always, given the expendability factor - rewards people who are most able to fit the narrow standards that are necessary to win the contest. If you can play office politics just right, dressing like and mingling with people above you and making sure not to offend anyone or miss anyone's birthday or whatever, you climb the corporate ladder. May the best drone...er...get the consolation prize. Winning is only for those who are already winning and cheat to maintain it, or who are endowed with enormous luck, charm, and craftiness and diminutive conscience.

People probably did...er...as well as anyone in the social class they were born into could do...in less competitive and less heavily populated societies, whether they showed their quirks or not. Communities were small and geographically bound (or in hunter-gatherer days, kinship bound), so everyone in the community would interact with and have a chance to get to know those who had more trouble mastering superficial charm. And if they cultivated talents, then they would put those talents to use in whatever way was appropriate for their social class.

Since the business sector seems to dominate our society, employing very large percentages of the middle and lower classes, and we have factories to do the kind of work that individual craftsmen and craftswomen used to do, the demands of business seem to dominate popular culture. And business jobs tend to require a lot of conformity, and especially in the white-collar sector, superficial charm. So these qualities seem to be valued by society in general to a certain degree. It's harder to employ people who can't fake the factory standard of business well enough to ditz about in a white collar job until their sociopathic boss decides to fire them to increase his or her bonus during a bad or average year.

Schools are set up, mostly, to train people for these kinds of business jobs.

I don't know how hard it would be to develop a more cooperative society where the disabled and those who can't hide their quirks well (everyone has quirks, but some are better at hiding them than others) can thrive, and those who can play the "normal" game don't have to and can thus enjoy more of what their own personalities have to offer. At this point, it might require a dangerous and costly revolution against the CEOs of all the major American-based megacorporations.

Saturday, October 6, 2007

Personal Pleasures

After I was done spending some time journaling and listening to music by candlelight this evening, I thought, "**** the thought that I'm too normal. I can just enjoy what I enjoy."

Worrying about your social worth in the context of how you spend time is unfortunate and unnecessary. There's so much to enjoy in life, with one's own individual preferences, perceptual style, and imagination, no matter what those are. Well, chronic depression could get in the way of enjoyment, but I don't think every depressed person experiences constant anhedonia. I am not so pathologically normal as to lack the basic equipment to enjoy solitary pleasures. That's a good thing. Then again, apparent lack of solitary pleasure may only be "normal" in a pro-extroversion society where poorly done psychological studies go on about how extroverts are happier and healthier than introverts. I wouldn't be surprised if many of the "introverts" in their studies are actually subclinically depressed extroverts, or are depressed because they think they should be extroverts.

Too weird? Too normal? As long as you're not seriously hurting anyone, yourself included, you might as well enjoy what you enjoy.

If you like ice cream, cool. Creme brulee, fine. Parties, whatever. Nature walks and journaling, ok. Simple repetitive behaviors? Hey, I was playing with a stretchy ball toy at a party today while I was withdrawing and listening to conversations and my Aspie BF was trying to socialize with everyone. (I'm more introverted than he is. So much for the stereotype of Aspies as all asocial flaming introverts. I've seen Joel of "NTs are Weird" debunk that one too. The thing with my boyfriend is that he seems to have more trouble managing overwhelm than I do.)

Sunday, September 30, 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, September 20, 2007

Typecasting

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

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

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

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

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

Wednesday, September 19, 2007

A Passing Thought on Alternative Autism Treatment

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

Friday, September 7, 2007

Prejudice is Cultural

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

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

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

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

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

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

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

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

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

More than Words

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

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

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

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

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

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

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

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

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

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

Monday, September 3, 2007

Accommodation vs. Exposure

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, September 1, 2007

Standard vs. Typical

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

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

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

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

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

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

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

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

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.

Juicy.

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:

http://thiswayoflife.org/blog/?p=222
http://ballastexistenz.autistics.org/?p=443
http://ballastexistenz.autistics.org/?p=97

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 movements...well...it 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:

http://autismrealitynb.wordpress.com/?s=aspies

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."