Thursday, February 28, 2008

Broken vs. different

Ever since we first began to whisper (autism), I have been thinking about it a lot. Some thoughts are practical: what would it mean for Scooter, for us, for his education, for his future. But swirling behind this was the abstract: what is the role of genetics, how does the autistic mind differ from "normal," what is normal anyway.

And, as happens when I have a chance to mull questions and let them simmer in the back of my mind, I start to play with hypotheticals.

Although I agree with those who point out that changes in diagnostic criteria and awareness of the whole autism spectrum make it a bit rash to proclaim that there is an "epidemic," I do wonder if we are also seeing an evolutionary shift (or branch or something else) that is an effect of our growing use of technology. For people who find social interaction difficult to impossible, the internet provides a new way to present oneself; the increasing importance of technology means that those who develop it are more readily accepted and granted greater status. Perhaps, and I have no hard evidence to back this up in any way whatsoever, a larger number of people on the high functioning end of the spectrum are entering relationships and reproducing, instead of simply being the eccentric bachelor who spends all his time with his work.

Another direction my thoughts go, a very personal one, is that perhaps the autistic brain is not "wrong" or "broken," but "different." As I have gotten older, I have been able to recognize that my mind works differently than others'. When given a problem or a project, I can quickly see the most straight-forward path to the goal. (And am then frustrated with those who can't see or insist on taking detours that are obviously counterproductive.) For vacations, it is my job to pack the bags and then the trunk since I can fit more into a space than Trillian can; again, this is just something I immediately see. Certainly a variety in the way that minds work adds a richness to the human experience, drives innovation and progress, creates solutions that might otherwise be lost. Perhaps there is a need fulfilled by the workings of the autistic mind, and we would benefit from opening up to this.

I am not the only person musing on these topics, and many have done more to bolster these ideas with well-considered logic. The most recent example: this article from Wired. It articulates so well the idea of "different," not "broken." I especially find interesting the analysis of performances on intelligence tests and the idea that
you wouldn't give a blind person a test heavily dependent on vision and interpret their poor score as an accurate measure of intelligence.
But that's really what happens when the intelligence of a person with autism is measured by a test that requires verbal interaction, usually with a stranger.

So now I have more to play with, thoughts I can push further now that someone else has teased out some of the threads.

7 comments:

Anonymous said...

I am the parent of a 5yr old with autism. My wife recently found a book by Elaine Gottschall, titled "Breaking the vicious cycle" that I believe will help our daugter recover from this disease. I do not believe that autism is strictly genetic and I refuse to accept that there is no cure and only behavioral therapy is valid. to do so is to believe the crap the pharma/industrial/gov. complex is trying despartely to covince us of. We have been doing alot of research on the internet and libraries for nearly a year and believe that this book, and others like it hold the key to getting to the real truth about this disease and others that are plauging our modern f'ed up society.
Peace.
J.M.
justme_in_here@yahoo.com

Mouse said...

Both my son and I are most likely dealing with Asperger's. Neither of us has been diagnosed, and it seems quite possible that the year's worth of OT my son has had may have pushed him along just enough that he will never be diagnosed as on the spectrum.

I believe--based mostly on personal experience and the fact that I can easily trace these traits back several generations--that my and my son's situation has a significant genetic component. I also think that we're hard-wired this way, that it's not a disease, and that the best plan for us is to develop coping skills without trying to rewire our minds entirely. But I also wonder, suspect, think that there is not one single 'cause' of autism and that the spectrum may include several different things that have similar manifestations.

Bea said...

Thanks for posting that article - I enjoyed reading it. I agreed with most of what I read - but I'm also a bit wary of celebrating autism to the point that we don't attempt to remediate it at all. (I don't think that's what you're advocating in this post, but I know of others who do.)

I read Look Me in the Eye over Christmas, a memoir by a man with Asperger's who describes himself as having lost some of his unusual abilities during the time period in which he developed his social awareness (as an adult). He believes that he has genuinely rewired his brain - not to the point of no longer having Asperger's, but to the point where he is happily married and has friendships. He is much happier now, even though he now has a more ordinary level of ability. In Bub's case, this is the kind of learning that I believe he's capable of, and I'm happy for him to sacrifice some of his unusual abilities in exchange for that kind of learning.

Bea said...

We're posting simultaneously here - but I too was going to point out that what we call "autism" is probably in reality several different conditions with different causes and potential outcomes.

Lisa b said...

I'll have to click over to that article.
You know I find this topic fascinating and totally agree with your theories.
I keep meaning to post about what I've been reading about Julia - your comment about being hardwired reads exactly like the description of Julia's brain. Did I tell you this before?
What we know about Julia and her disorder really fits with the model of autism being many different disorders that present in various ways. Sotos has a gene that explains about 80-90% of cases. I know a mom with an older girl had a diagnosis of NVLD before the Sotos diagnosis. Another mom of a younger girl has a diagnosis of a disorder of the corpus callossum and the girl is 'sotos like'. If you have a disorder of the corpus callossum it presents like NVLD but actually has a structural cause.

All of these have a huge range of presentations from subtle to significant, just like autism.

Aliki2006 said...

The Wired article was sent out to our local AS group not long ago and I read it with interest. As you probably know, we don't view AS as a disease but, rather, feel that it's hardwired into our son's genetic make-up--it's a huge part of who he is, and will always be. There are aspects of it we want to change and work on--like his meltdowns and his eating problems, and we really want to see him develop more social awareness--especially in the department of recognizing other people's feelings--or at least acknowledging that they have feelings.

There is no cure for autism or autism spectrum disorders, but there are lots of therapies for remediating some of the more severe issues--the ones that impair an individual's ability to be happy, healthy, and successful in life.

Mouse said...

Bea and Aliki--I can't say I'm surprised to see that we're in a similar space on this. Not that I can know exactly what's going on in his mind, but I generally find that the more Scooter's sensory and social issues find some stability, the more of himself that shines through for everyone to see. And I feel that with OT and some social guidance, it's not so invasive that we're looking at radical changes, just give him some structure.