Autism, Longevity, and Progress -- Hold the Pity, Please!

At present, I am the happiest I've ever been in my life.

I cannot begin to describe the sense of awe and wonder I feel to have the opportunity to be alive now, in a time when a veritable megalibrary of information -- via the Internet -- is a just a few keystrokes away, no matter where I am. When diseases that used to mean certain death can be alleviated. When being born female doesn't mean being someone's property. While there are certainly precautions that must be taken when introducing, testing, and developing any new technology, it seems clear that the overall quality-of-life in the world is increasing in parallel with technological advancement.

Take birth control, for instance. Removing the mysticism from pregnancy and childbirth has made it possible for many, many women to choose self-directed lives that would have not been available to them just a few generations previously. I could go on with more examples, but in the interest of, well, getting to the point, I'm going to get right to the point.

Sometimes, when I read some transhumanist / biological enhancement / etc.-themed discussions, I come across statements in support of certain genetic interventions that make me quite uneasy.

I am far, far from being a Luddite, much less a "bio-luddite". Anyone who reads even half my blog entries should find this obvious. I'm more than in favor of radical life extension and self-directed evolution using technological and biological and educational means. I have absolutely no qualms about the notion of someday having my brain implanted in an artificial or vat-grown body.

Not a trace of a shudder moves through me when I imagine such possibilities. There's no "yuck factor" at all, in my mind, associated with such notions. And I do think that there is a lot of meaningless back-and-forth gloom-and-doom yammering on the topics associated with these and other potential "radical" modifications of the human experience, usually prompted by archaic notions about there being some sort of fixed and immutable (yet also curiously non-quantifiable) "human nature".

In short, I'm all in favor of technological progress. And I am one of those who thinks there is definitely such thing as overapplication of the precautionary principle, and that this overapplication could literally cost lives.

But.

I do think that some caution is in order. And this caution, in my personal example, comes in the form of making sure that when an intervention is suggested or promoted, that the value and meaning of the intervention is carefully considered. I've read a few snippets here and there from transhumanists who apparently have absolutely no idea what goes on in the minds and emotional landscapes of autistic people -- while I can sympathize with the fact that human nature can result in fear of the unfamiliar, it would behoove anyone who claims to embrace accelerating change and new horizons of invention and experience to look more deeply into the "alternate" experiences already in existence.

I've found that discussions of autistic people are often highly charged with emotional rhetoric. I watched a video recently (which I will not dignify with a link) entitled "Autism Every Day" -- created by an organization entitled "Autism Speaks". This video, for whatever reason, attempts to frame autism as some sort of unimaginably horrendous tragedy.

And the reasons for why autism is a "tragedy"?

Well, in one case, it seems to be because a young boy will "only do a puzzle when he wants to".

In another case, a young girl doesn't feel like playing on a swing when her mother thinks she ought to.

And in practically all cases, there's something about how these kids supposedly can't show emotion, or communicate. Yet if you watch the kids in the video, most of them ARE communicating. Constantly. One little girl is hugging her mother, but her mother seems completely oblivious to this.

The only "tragedy" here is that these parents apparently didn't want actual autonomous beings for children, but puppets. Maybe in the future parents will be able to purchase programmable child-shaped robots whom they can set up to perform tricks and chores on command, and to say "I love you" when a little button is pushed, but for those compelled to bring forth biological organisms, it seems only fair that these biological organisms be expected to have minds and yes, agendas of their own.

Autistic people are real people. We have real thoughts, and actual (even complex) emotions. Anyone who has met me (and is reading this) has likely met me in a setting when I was quite happy and relaxed -- I don't know if I actually came across that way (someone at HETHR did ask me if I'd "had too much caffeine" when I was bouncing a bit and flapping my hands excitedly), but I assure you, I'm an extremely positive person.

Look at the title of my blog: EXISTENCE IS WONDERFUL. For me, that's the utter honest truth: I love, in (almost) every sense of the word, being alive.

Personal improvement and self-directed evolution should not be about having other people trying to coerce you into changing superficial characteristics for the sake of being able to blend in better.

My intense ability to focus is something I utterly treasure. A lot of autistic people have focus like this, and good memories for various things (though of course this doesn't mean that these characteristics "justify" my existence, or anyone else's -- I don't think I should have to "justify" my right to be alive, evolve as I see fit, and participate in activities I find personally rewarding). When people bemoan the "tragedy" of autism on the basis that, oh no, some kid won't sit still and do a puzzle when his parents want him to AND (gasp!) he flaps his hands when he gets excited, I tend to get pretty irritated.

Far too often, I've seen people (progressive folks, even) lumping autism in with a general laundry list of "diseases" that ought to be eliminated from humanity. This, in my opinion, is a terrible mistake.

I can't help but be reminded of the movie adaptation of Roald Dahl's "Matilda": for those of you unfamiliar with this story, Matilda is a smart kid (who turns out to have telekinetic powers as well -- hey, it's a fantasy) born into a family that doesn't have any idea as to the world she inhabits. There's one scene where the family is watching television (some inane game show). Matilda is reading a book. At one point, her father comes over and demands that Matilda "put the book down and watch TV like a normal kid!"

Matilda is considered "defective" by her parents, mainly because she uses vocabulary that they do not understand and because she doesn't enjoy the same types of activities that they do. As far as her parents are concerned, Matilda is sorely limited by virtue of her neurology. She's not autistic, but she might as well be considering how her parents pity her and consider her to be "in her own world" and incapable of appreciating what they consider to be the finer things in life. They see her as profoundly limited, even "disabled". They pity her, even though she is probably happier than any of them.

I'm sure that if Matilda's parents had had the choice to select between embryos, they wouldn't have picked Matilda if they'd had any inkling that she would be the sort of child she turned out to be.

And I'm very conflicted on this issue.

On one hand, reproductive freedom is something I am overwhelmingly in favor of, and I don't think that doctors or governments should use legislation to force people to bring children into the world that a particular set of parents doesn't desire to have. On the other hand, it saddens me that parents might have such horribly ignorant misconceptions about "quality of life" that they'd feel compelled to select against certain characteristics for the sake of making a kid that would have an easier time blending in with others. Again, I'm not advocating government control of reproductive freedom -- when I say that something would make me sad, that isn't the same as saying that I think there should be a law against it. I'm just trying to make a point about ignorance.

One must remember that it is impossible to be and do all things. Whenever you're doing something, by definition, you're NOT doing everything else. Some people might suggest that being configured a certain way, that being autistic, "limits" a person's choices in life, and decreases the potential for leading a quality life. This is the argument I've encountered most often from the more progressive folks, and I can understand how they might get this sort of perception if all they have to go off is media and Hollywood stereotypes, and the occasional "Newsweek" special featuring some sort of parental sob-story about how their kid is more interested in train sets than in interacting with the rest of the family.

Autistic people can have experiences that are profoundly deep and rich and wonderful -- experiences that, perhaps, nonautistic people do not and cannot experience. What if I said that I would feel terrible bringing a nonautistic child into the world? After all, nonautistic people tend to have duller sensory sensations than many autistics, they tend to be less resistant to destructive social memes (look at all the teenagers that die in alcohol-related automobile crashes every year -- I'd bet a tidy sum that these aren't autistic kids getting drunk and crashing cars), and they can often have a pathological dependence on being accepted by a group.

You see, this thing works both ways. BOTH types of human configuration result in the person "missing out" on some things, and benefitting from other things. It's not always the same combination of things, but it is clear from my own communications with people on and off the spectrum that neurological configuration has nothing to do with a person's potential for happiness, achievement of goals, and potential to enjoy life.

This may come as a shock to those whose only experience of autism is through ridiculous media stereotypes, or complete and utter hearsay (about your uncle's cousin's neighbor's autistic kid who had this and that problem), but please, I would request that you curb your knee-jerk reactions to statements in favor of NOT curing autism. Do some research before you start advocating the elimination of certain kinds of people on the basis of ridiculous stereotypes and ignorant misconceptions. The people most in favor of "curing" autism aren't trying to find this cure for the sake of their child's happiness -- they're doing it because they find their children, by and large, to be more inconvenient than they expected. And as far as I'm concerned, people who want to lead an easy and predictable life should probably consider NOT reproducing at all.

If I sound a bit harsh here, it's because I dearly love being able to communicate with people whom I do share lots of common ground with in terms of holding tremendous optimism and excitement about the future. And yet, occasionally, I come across an almost-casual snippet written by someone I like, someone I hold considerable respect for, someone who I would enjoy sharing ideas with, that makes me start questioning whether this person would rather I hadn't been born.

And obviously, that bothers me, even though according to the stereotypes I'm not supposed to have "emotional complexity". My thoughts and emotions are tremendously complex, to the point where they are often difficult to express in words. This doesn't mean I don't have them, or that someone can make assumptions about my inner life based on how I might look at any given moment. Please, fellow transhumanists: remember that your numbers include people like me, many of whom are just fine not having "typical" body language or typical sensory perceptions or typical behavioral patterns.

Being typical is not the same as being healthy, and when enhancements start becoming widely available, a lot of you will choose modifications that will render you atypical by definition. And, more than likely, you're going to face discrimination on the basis that you're doing things that are abnormal. It is crucial to remember that current social standards of normality are not the same thing as the ability to distinguish between health and disease. When you start getting fitted with advanced cyborg limbs and memory chips and nanorepair modules YOU are going to be called sick and weird and people are going to tell you that you're a travesty and shouldn't exist.

And I'll be right there defending enhancement technologies, since I'm certainly interested in some of them myself.

I'll be happy to modify myself for things like greater memory capacity, improved disease resistance, and of course, resistance to age-related damage. But I will NOT consent to having my brain "normalized" if such a thing were even possible. And though I have no interest in having children, if I did want them, I would not be testing them to eliminate the chance of them ending up autistic.

What concerns me is the notion that at some point, giving birth to people with my characteristics and some aspects of my genetic makeup might be considered a crime against humanity by the very people that fought long and hard to assure that humans have the right and freedom to become posthumans -- fighting an opposition that all the while pitied them! I'm trying to do everything I can to support the transhumanist / life extension / technological progressive movement, and I'm certainly not going to let a few errant ignorant statements send me into the ranks of the bio-Luddites, but I do think that it's my right and responsibility (to myself and others similar to me) to point out that such ignorant statements may end up alienating folks who might otherwise put their energies and talents and resources into helping bring about the better future you're envisioning.

I don't want to end up in a future wherein I am, for instance, denied life extension treatments unless I consent to re-wiring my brain so that I no longer have the structures in it associated with Asperger's. Or (despite the fact that I don't want to have children) if I were forced to undergo germline modification such that I'd never be able to pass on autistic genes. Autistic genes can be pretty cool!

I like who I am, and I like the way my brain works in particular ways. Not because it's the way I am "naturally", but because it is good. There are a lot of "natural" things about my body that I'd love to change, but there are aspects of my brain wiring that just, well, make me happy and make me able to think and perceive in certain ways that seem conducive to learning and achieving certain goals.

I don't believe in cosmic destiny or supernatural beings controlling human existence, but it would disappoint me greatly if the people I'm attempting to usher in the future with can't stand the thought of people like me continuing to exist. Pity is an insult, and a terrible one at that. There's no way to be on equal footing with someone who constantly feels sorry for you. I would appreciate being reassured that this isn't the case. For anything someone can name that makes them feel sorry for me, I could name something about them that makes me feel sorry for them.

But I'd really rather just meet as intellectual equals and friends.