Sunday, June 17, 2007

Uneducated guess

Reading Kristina's blog this morning, as I do most mornings recently, my armchair theory of autism causation popped up in my mind again.

She quotes Kati Wright as saying:
Despite receiving high quality early intervention, my son lost every word, every skill he ever had within a year of his diagnosis. Christian lived in constant pain for the following two years with a destroyed immune system and endured bouts of severe colitis, pnuemonia, staph, strep and cellulitis, while hardly eating, barely sleeping, only screaming. Tens of thousands of parents are living this nightmare along with me. We are understandably angry at the glacial pace and narrow focus of autism research.
And I am struck by how different that sounds from MK's childhood which was all forward progress. It was different progress from the progress of his peers, but we never got the sense that he was going backwards, and other than the usual string of stomach bugs when he first went to daycare (which he was kind enough to share with his mother and father) he was never sick. I am convinced that MK has developed just as nature intended him to, a wonderful expression of the DNA he was born with.

When I think about this, I also think about childhood disintegrative disorder and about the Autism Twins blog and mitochondrial autism, which is apparently a condition in which insufficient mitochondrial function is at least a contributing factor to autism.

Autism is a name given to a cluster of behaviors and modalities of processing. It is tempting to assume that people who match up with this cluster of behaviors and modalities do so because they share some common neurocircuitry. I would go as far as to say that, if we could actually observe such things, some autistic people would probably be found to share at least some circuitry that would be distinguishable from neurotypical circuitry.

But I very much doubt that all people with an autism diagnosis would be found to have identical wiring, even if they shared very similar behaviors and modalities. That is because, in living things, similar variations can often have different causes. People jump up and down both when they've banged their thumb and when they've won the lottery. People get depressed because their serotonin production is too low, and because their serotonin reuptake is too high. People can be thin because they move around a great deal, or because they eat very little. Same appearances, different causes.

And seeing that the modalities and behaviors that were are talking about are anything but homogeneous in the first place (in fact, there is at least as much variety in the behavior of autistic people as there is in the behavior of NT people) the idea of homogeneous causation seems pretty unlikely.

If, then, there is probably more than one cause for autism, it seems fitting to me that there be more than one set of investigations going on. More importantly, if there is more than one cause for autism, then success in identifying or implicating one cause does not mean that that hypotheses involving other causes are invalidated by that success. It is possible for it to be true that autism is hereditary and part of normal genetic diversity and, at the same time, for it to be true that autism is caused by an immunological disorder during development of the brain. It wouldn't surprise me if there were a dozen or more causes, and probably hundreds or thousands if you count each combination of genetic variation as a separate cause.

That said, the real utility of having a term like "autism" has nothing to do with causation. The utility of the term is that it helps us get an idea of what we should do. We know that autistic people are often more happy and successful with certain types of support. We also know that support has been grossly inadequate (if not actively harmful) in the past. That should lead us to conclude that current support is unlikely to be optimal. So that is something that we could be working on. And that is the kind of research that would benefit just about everyone with autism.

So, in short, I think that people should go ahead and research whatever seems likely in terms of causes. There may even be some cases of autism that have causes that make them amenable to medical intervention. Other cases don't have a "cause" any more than blond hair has a "cause." It would be good to demonstrate that too. It's all good. In the meanwhile, no matter what the etiology, most autistic people can benefit from some support or accommodation. So, as and entirely separate issue from causation, and without splitting into camps depending on which cause seems most likely for the autism closest to our own lives, let be sure that the lion's share of the energy is spent on support and accommodation.


kristina said...

This post sets a number of things into perspective for me---regarding why all kinds of research, about all kinds of causes, is to be encouraged, an also regarding why we need to keep in mind the overall and (to my mind) most pressing need---"support and accommodation."

My son's development has always been very slow and there have been times when he seems to have "regressed"---but some of what he seems to have "regressed" in was in his behaviors worsening, or in him not learning some academic skills as quickly as he had when younger. I always have to factor in that, even as his behaviors worsened, his communication skills were increasing, and I've always thought that some of the behaviors were his attempts to try to communicate as much as he wanted to; that his becoming more alert and aware actually led to his behaviors "worsening"---he wanted so much more to tell us things, and was more aware himself of the limitations of his verbal ability.

I do think, too, that Charlie, like MK, has developed as "nature intended him to."

VAB said...

Thanks for stopping by, Kristina. Like Charlie, MK has gone through times where he was more difficult, but as you point out, development doesn't always mean "increasingly comfortable for caregivers" :-)

KAL said...

Hi VAB, and thank you for stopping by my blog and for mentioning us here. I think there are many different routes that land some under the umbrella of autism and I've really only seen forward progress as well with my two (although J. had a few words in circulation before dropping them back when he was about 18 months old).

Mitochondrial autism does seem to be a real thing for several suffering from it, but it is not what my boys have, that has already been ruled out. They do have a mitochondrial disorder, we just can't blame their autism on it. I agree that all people with an autism diagnosis do not have identical wiring -- my identical twins are proof enough of that to me.

Thank you for the thought-provoking post. I also hope that just as much time, money and effort is spent on support & accommodations for our children.