Comments on Existence is Wonderful: Transhumanism and Disability Rights

Anonymous:I agree with you about the brightness of...

2006-06-11T11:32:27.430-07:00

Anonymous:

I agree with you about the brightness of the comment box...I wish there was some way to control that. I purposely chose comfortably low-contrast coloring for my main blog. :)

Also, thank you for stopping by...I am still amazed that anyone cares what I write, but attending the conference and reporting on it has been a tremendously rewarding experience (as has simply coming to realize that I am not the only person in the world with certain notions about life!)

I'm especially encouraged that you've commented on this entry...one thing I'm attempting to emphasize through my involvement in transhumanist / progressive circles is the necessity of diversity, and the capacity of a society to accomodate an incredible range of morphological variations and ability sets. Take care, and certainly feel free to comment on anything!

Nydra, I originally came to your blog to read your...

2006-06-11T04:15:55.353-07:00

Nydra, I originally came to your blog to read your impressions of the conference at Stanford last week, but I've ended up spending the wee hours reading your entire site. So many of your perceptions are aligned with mine and you've expressed them vividly. This has been a most enjoyable experience.

Arriving at this "brilliantly lit" comment box after spending time in the comfortably dark blog environment is disorienting. Discombobulation aside, I want to respond to many of your specific comments, but it's after 4 a.m. here and I need to get some sleep, so I'll have to return later.

My brain would go into a sort of useless overdrive...

2006-05-07T22:24:55.553-07:00

My brain would go into a sort of useless overdrive where it would desperately try to figure out how to deal with something like a sudden break failure. I say useless because, in the meantime, the car is hurtling towards disaster.

Indeed, this is exactly what I experience -- I basically don't react in a sensible manner to sudden stimuli. I need lots of time to sort out sensory input and figure out what is most relevant, and being a safe driver necessitates being able to make good split-second decisions and make sense of input in the "right" order. The order and manner in which I perceive my environment is very good and well-optimized for things like pattern recognition and mechanical drawing, but it is very poorly optimized for driving. Hence, I consider it to be much more responsible of me to NOT drive. I honestly don't feel like I'm missing out on anything, and I have a hard time understanding the common American mentality that deems anyone who gets past age 18 or so without a license as some sort of freak. It doesn't bother me not to drive. It bothers me a lot more TO drive, since I never feel safe.

I could probably drive but only if it was all in slow motion, like a chess game, where I'd have plenty of time to figure out how to deal with changes and emergencies.

Same here. Processing time is essential.

It seems to please my brain to guide my body with some limb acting as a leading edge.

I totally understand what you mean...I use this as sort of a vector to get through areas that are somewhat too crowded for easy navigation.

There are other quirks I have that still persist to this day--stuttering, talking aloud to myself at great length, utter failure to multitask, fugue states, repetitive behaviors, etc.

Multitasking is probably THE most difficult thing of all for me -- and it is doubly annoying because I've often heard silly comments to the effect of, "We need more women in the workplace because they can multitask better!" Um, if anyone attempted to make this generalization about me they'd be sorely disappointed. My performance goes rapidly downhill the more things I'm expected to keep track of simultaneously. However, I CAN work on the same thing for very, very long periods of time without experiencing boredom, and I have had people compliment my thoroughness and attention to detail. Basically, I need to keep assimilating details about something until I can build a "mental model" of it in my head. I tend to think of different areas of subject matter as being stored on "cartridges" and in order to have access to the thought-space describing a particular topic in depth (and with any coherence) I have to "load the right cartridge".

As a youngster, I did echo speech, reverse pronouns, fixate on subjects and parts of objects, etc. Nobody knew what I was going to grow up to be like, but I have a feeling I managed to unwittingly surprise everyone. When I was four, it was doubted that I'd be able to attend regular school without "lots of support and special services" but I did get by. I really don't think anyone can tell what someone is going to be like as an adult, or even a twelve-year-old, when they're four.

I used to make the "high functioning / low functioning" distinction, but now I'm really not so sure that such a distinction can be truly said to be valid at all. I've read about autistic people who were considered to be "profoundly retarded" until they started writing or typing -- at which point they were re-designated as "gifted" because they finally had an interface with the world. I think that "functioning level" is quite arbitrary and environment-dependent: I may be "high functioning" in my living room, but take me into a crowded bar or party, and I'm probably quite indistinguishable from people designated as "low functioning".

If this sounds a bit strange, I'd recommend visiting: http://www.gettingthetruthout.org

(Read the WHOLE thing -- the first 10 pages or so might be a bit misleading, but there's a point to it)

I would also not refer to the autistic brain as "damaged". As far as I know, the brains of autistic people have been revealed to show some structural differences, but nothing like lesions or "dead" areas or things that would actually indicate organic trauma or injury or illness. I think that autism is just another way to develop, and the degree to which structures differ from those in the more "typical" brain can vary, but it's not the same as an injury or damage. I know that the brain emphasizes and "prunes" connections throughout development; it's a continuous process of optimization. Certainly, 2 people can accomplish the same task through entirely different mental means -- this is the form "adaptation" can take, I suppose. Some people learn to read through "phonics" and explicit teaching, whereas others teach themselves to read and end up memorizing the visual shapes of entire words. In the end, it's difficult (and possibly unwise) to try to determine who is the "better" reader -- the important part is that both people are reading.

Hm. I find noteworthy coincidences between some of...

2006-05-07T04:26:57.046-07:00

Hm. I find noteworthy coincidences between some of your experiences and mine.

After trying repeatedly in my twenties, I too gave up on driving. What I'd often find is that I'd "lock up" when confronted with a sudden change or emergency.

My brain would go into a sort of useless overdrive where it would desperately try to figure out how to deal with something like a sudden break failure. I say useless because, in the meantime, the car is hurtling towards disaster.

This was so bad that, one day, I drove my friend's truck straight into a tombstone, snapping the stone right off its base. I never touched the wheel again.

I could probably drive but only if it was all in slow motion, like a chess game, where I'd have plenty of time to figure out how to deal with changes and emergencies.

I also find myself gesturing meaninglessly while walking. It's sort of embarrassingly like I'm dancing or something. It seems to please my brain to guide my body with some limb acting as a leading edge. It's hard to describe. My head goes into this groove and suddenly I'm exaggerating all my bodily motions as if I'm tiptoeing. Going around corners, bypassing obstacles or turning seems to provoke this in me. I find my hand pointing and then dragging my whole body around a corner.

There are other quirks I have that still persist to this day--stuttering, talking aloud to myself at great length, utter failure to multitask, fugue states, repetitive behaviors, etc.

But I agree with your idea of everyone having different developmental paths. The brain seems a lot more adaptive than we often give it credit.

It's also clear that autism is a continuum. At one end we have high-functioning people with only mildly autistic traits and at the other we have people with striking savant abilities yet profound lacks in other areas.

The question then becomes, is it possible for even a profoundly autistic person to slowly train themselves into more neurotypical behavior? (I'm not saying autistics should do this. I'm just exploring the question in the abstract because it poses intriguing questions about brain development.)

Or are there some forms of brain damage that are so deep that experience and brain development can't route around the damage unless helped by outside repairs or medicine?

Well, one thing about autism is that it makes deve...

2006-05-06T11:15:51.430-07:00

Well, one thing about autism is that it makes developmental trajectory very difficult to predict. And development occurs in autistic people and neurotypical people alike -- it's just that autistic people don't tend to "meet milestones" in the same order as a more typical individual. To me, that simply says that the supposed "milestones" are an overgeneralization, and that humans are diverse enough such that the same "checklist" of things one is supposed to learn to do, in a particular order, actually does a disservice to many.

And then we have "modern" additions to this checklist -- things like driving a car, which is supposed to happen when one is around sixteen. I'll be 28 this year and after 10 years of on-and-off practice behind the wheel, I determined that I am not really set up perceptually to drive safely. (I tend to notice things like "a letter on a license plate" before I notice that it's attached to a car, and I have something of a delayed response to visually perceiving movement, especially when different movements are happening all around me). However, I AM percpetually set up to do a whole lot of things that I find useful, and that I do better than a lot of people.

I have an extremely strong visual memory for static patterns (as in, patterns that stand still). I have a great "search function" and can quickly find a particular word on a page. I use my perceptual abilities every day to do things at work (where some of my tasks involve making drawings and engineering diagrams) and also just around the house. And I can hang a picture perfectly straight because I'm very sensitive to linear alignment. :) Basically, the same things that make it dangerous for me to drive confer advantages in other areas, and I wouldn't want to "trade" this. I also like the "challenge" of getting around without using a car: I probably get a lot more exercise than a lot of people through walking, and taking transit has obvious environmental benefits.

My point is that I think that in many cases the autistic brain just "optimizes" differently. One example of this is in terms of speech and reading: I could apparently repeat words as a very small child, but then I lost the ability to speak any word or phrase I hadn't read. This may sound like a "regression", but I think it was actually just a developmental optimization which favored text. When I was just repeating words I had no idea what I was saying, but once I started reading and writing, the notion of words being communication started making a lot more sense.

I definitely think that the entire social fabric depends on having a variety of individuals who are "optimized" differently. Even if we could propose of a far-flung future in which it was possible to be "good at everything", it's likely that individual preference would make some sort of specialization part of everyone's makeup.

I know of several people who were diagnosed as, or showed a lot of signs of, autism as small children but who now either have only "residual" outward signs or consider themselves to be "normal". I honestly don't know what that means, to tell you the truth. What I suspect is that their brains are still somewhat "differently optimized" but that they've adapted to a certain extent, and their development has evened out over time. I also know some people who plateaued at a certain age, and others who lost skills (usually getting better in other, "nonstandard" skills) at different phases in their life. In my case, I know I feel perfectly "normal" at home doing things my own way, but that I'm quickly reminded of differences at work, etc. -- like when someone comes up and tries to engage me in chitchat and I have no idea what to say, or when I find myself flapping my hands while walking through a parking lot (it helps me feel "oriented in space"). But I certainly don't feel sick or damaged or depressed -- I'm happier than most people I know!

Hello Nydra! Just figured I pay a visit and commen...

2006-05-06T03:57:38.733-07:00

Hello Nydra! Just figured I pay a visit and comment on your post.

As I mentioned on BH many months ago, I was diagnosed, in 1968 at the age of four, with autism.

I've always been very skeptical of that diagnosis but perhaps, if my autism was mild enough, my brain somehow healed or changed itself to compensate over the years that followed.

Which takes me to your main point: I agree children and fetuses shouldn't be "edited" to be neurotypical. That deprives the world of some very interesting viewpoints and diminishes our culture in the long run.