Hypothetically Speaking

I had the privilege of attending an event the other weekend that gave community members a chance to hear various experts on autism. We heard reports on ongoing research (the science experts). We heard about community resources (the information experts). And we heard about everyday life from a panel of personal experts: three parents of kids on the autism spectrum, and three people who live on the spectrum themselves.

The living-it-themselves experts had the opportunity to pick from a list of what questions they wanted to answer. I was especially interested in what the answers would be to the following questions that were listed in the program:

Do you think it would be a good thing if research found a cure for autism and Asperger's syndrome?
Would you want to be "cured"? Why or why not?

Unfortunately for my curiosity, these were not the questions that the panelists elected to address. I wonder whether the other questions were just more interesting to the panel, or whether there was some active avoidance of these particular questions.

You might say I've avoided these questions on Elvis Sightings myself, actually. Or at least I've chosen other material. The "cure question" is mighty important though -- for how people live their lives now, for how the money flows, for how autism-related policy is crafted, for research priorities, for what choices people may or may not have available in the future.

I'm reminded of my testimony back in 2007 before a state senate committee about autism insurance. The line that got media-quoted went like this: my daughter has epilepsy and autism, and "it's astonishing to us that of these two neurological conditions, one of them is thumbs up and one of them is thumbs down." [when it comes to insurance coverage -- fortunately we won! so that statement is no longer true!]

Now, consider the hypothetical question: "Would it be a good thing if research found a cure for epilepsy? Would you want Joy to be cured?"

Well, heck, yeah! Conditionally, of course -- we'd need to know about risks, and costs, lots of important details. But to the basic question, the answer is a pretty solid YES.

Replace "epilepsy" with "autism," and both the question and answer feel somewhat more tangled.

The rhetoric of curing autism has been deeply entangled with vaccine-autism fears, and a whole slew of non-standard / alternative medical treatments: some relatively benign, some downright scary. When people (parents) are desperate for a cure, and science doesn't have it, the door opens wide for uncontrolled experimentation. And quackery, alas. Very hard to sort out.

And then there are the voices from the autistic self-advocacy community and their allies, people who do not want neurological differences to be viewed as brokenness, but ask instead that the world welcome such differences as part of the beautiful diverse tapestry that makes up humankind. This view envisions a world where we pour the effort and funding that is currently flowing toward cure-chasing into supports and acceptance instead.

One aspect that makes the cure-question less straightforward is the increasing evidence for genetic factors in autism. It's not going to turn out to be anything simple, lots of bits of genes are implicated so far, and the geneticist who came to explain the lastest state-of-the-science to my LEND class last semester left my head spinning. But one consequence of pursuing the genetic angle boils down to what has happened in the case of Down Syndrome: once we could identify it in early pregnancy, people started choosing to end those pregnancies (at a rate of up to 90%). Might that be what a "cure" for autism ends up amounting to?

Another disturbing scenario was explored on a fictional level by Elizabeth Moon in her novel The Speed of Dark, in which the protagonist is on the autism spectrum and an experimental procedure/"cure" for autism figures prominently in the plot. (Fascinating book, by the way.) What exactly would a "cure" do to the people to whom it was administered? What would be the risks -- especially in the early stages of developing such a "cure"? What would be the pressures, and where would they come from? In the novel, the pressure is from an employer. But I could imagine the pressure coming from the funding mechanisms of the health care system, or the educational system, or social services. As in: this treatment is your opportunity to become "normal." This will be your chance to no longer be a burden on society. If you do not take this chance, for the good of society, how can we offer you any further supports or services?

Part of me would very much like to plant my flag proudly in the neurodiversity camp, and proclaim that I don't want a cure for Joy's autism.

But... hypothetically speaking... if we were suddenly offered the choice?

Depends on the conditions. I seriously just don't know.

I do find it interesting, though, that epilepsy and autism (so often co-morbid) elicit such different reactions to the "cure question." That somehow hypothetically desiring a cure for autism might mean I think my daughter is "broken" but desiring a cure for epilepsy just means I have her best medical interests at heart...

It's getting late and I'm beginning to ramble. Please come ramble with me in the comments. Ramble, not rumble, though, OK?