December 21, 2004

Autism: To Cure Or Not To Cure

A Kos diarist points to a NY Times article on Asperger's & high functioning autism relating the perspectives of some autistic people who don't really feel like they need to be cured.

There are autistic people whose language capacities don't permit them to weigh in on the matter, and their family members usually feel somewhat differently about the subject. They may even at times feel that those on what's referred to as the high-functioning end of the spectrum are dismissive of their concerns, delighting in something that's been a source of a lot of pain for their families.

I would tend to agree with the parent in the article that the sharpest dividing lines relate to eventual self-sufficiency, though she put it a little differently. It can be hard to sort out all of another person's emotions about a relationship, particularly when you aren't especially good at it from the start, so autistics may not always relate especially well to what parents are going through. But in general, I think it's useful to separate a parent's possible dashed expectations of 'normalcy' from the parent's inevitable and abiding hope that their children will be able to care for themselves.

Even people on the shading-into-normalcy end of the autistic spectrum tend to be very literal. It may take decades for them to learn how to use the socially polite lies that allow people not to appear blunt and rude. They may never learn how to consistently tell when strangers are being truthful, joking or in earnest, and are often easily tricked in matters outside their area of interest. They tend to be too trusting in potentially dangerous situations, and can be ill at ease when nothing very alarming seems to be happening. These tendencies, which sound relatively minor, can leave a parent scared that unless their child is very fortunate in their friends, they'll be easy prey the minute they leave home.

It took a long time for me to piece together how big a concern of my parents' this was when faced with evidence that their daughter didn't seem to know who to trust or when to fear. I know now that some of the times it seemed they were angry at me, they were terrified for me. Of course the same misunderstanding between parents and children happens even among the aggressively normal, springing from the very same parental desire, but it's magnified when a parent worries that there will never be any 'growing out of it.'

And that's the smallest worry.

At the other end, parents may fear that their child will never speak, could never work or live on their own. These are concerns that would remain in the most loving and accepting of homes because (I've heard it said) parenthood can bring mortality into very sharp focus, and what could a parent want more for their kids than to know that they'll be alright after mom or dad is gone?

From the perspective of the autistic individual, some of the characteristic behaviors are well understood to be expressive of extreme discomfort in situations or in response to stimuli that don't bother others. Would it be such a terrible thing to take away that discomfort, the sometimes physical pain, the sense of feeling overwhelmed? It seems to me that could happen without erasing the individuality of an autistic. Even after removing some things that reliably sent my system on a rollercoaster ride, I feel like the same person, just more at ease.

In the end, I suspect the argument will come to naught. Someday there will probably be a way to allow all autistics to achieve self-sufficiency. But that way will probably not 'cure' the quirks and oddments that mark us out to some degree from other people, or take away the uniqueness of our personalities. In all people, individuality resists solving. Or at least, that's what I hope.

I'm a big fan of biodiversity, and for our species that includes intellectual diversity. As I've said before, we don't have fierce claws, big sharp teeth, or very efficient thermoregulation, on top of which our species is slow and weak compared to most animals near our size. Our singular advantage is our minds, and it's the fact that we're able to think in new ways in response to change that allows us to adapt to our environment without having to adapt our bodies very much at all.

Those who are wired differently contribute to our species' adaptability not only by contributing unusual perspectives, but by forcing other people to learn a new set of adaptive behaviors. All of us learn from each other, even when it's reluctant, and profit thereby in ways that aren't always obvious. It would be a disaster to 'cure' society to the point that none of us have anything to learn from one another, as demonstrated by every group of people who come to think it's a good idea to make a goal of it.

Whatever your take on the matter though, the human race could be said to be in no particular danger from autistics, even the very frustrating ones. The same can't be said of powerful sociopaths whose greed and shortsightedness threatens everyone, even if they are generally considered 'normal.'

Posted by natasha at December 21, 2004 01:34 AM | Health/Medicine/Health Care | TrackBack(1) | Technorati links |