Monday, February 8, 2010

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?


Anonymous said...

One of the issues with the 'cure' discussion stems from the fact that autism is so many different things. And, we're probably going to find out someday, caused by many different things.

I have unwittingly "cured" Charlotte of several of her autistic symptoms by making some dietary changes. I made those changes to cure her of a persistent rash but it had other effects of improving her eye contact and suddenly giving her the ability to use non verbal body language.

What if curing Joy's epilepsy made her autistic symptoms go away? Would she be cured of autism too? Would that mean she was never autistic to begin with?

Would it matter?

I don't think there's anything wrong with wanting to make life easier for our children, no matter what their disability, or whether they have a disability at all.

AuntieS said...

Joy is a joy to me just as she is, with her bright adorable smile and her energy and affection. Do I wish that her life could be easier? Do I wish that she could speak and communicate her wants, needs, and thoughts more easily? Yes, absolutely yes. I have learned much about acceptance and difference and looking for positives and rejoicing in small steps, which I might not have experienced if Joy was not the girl she is. And yet, I ache at times for the struggles that I see my brother and sister-in-law face, the times when they have been so, so tired and worried. I feel sadness at times when I see that Rose does not have the sibling relationship that seems "typical" for most kids. So, I can honestly say that I love Joy just as she is and will continue to find joy in her life and path as it develops, but if "cure" means that her path in life could be easier for her and those around her, then I would jump at the opportunity for that "cure."

Mimzy said...

I couldn't help but relate this to Deaf culture and the debate about cochlear implants.

Most hearing people have a very hard time understanding why a parent, deaf or hearing, would choose NOT to get a cochlear implant to restore hearing - we talk about safety, ease of fitting in with the mainstream world, etc.

Many people in the Deaf culture feel you're making a child not really fit into either world by giving them an implant - they can't hear as well as 'hearing people' can't enjoy music in the same way... what they hear just isn't as rich as what hearing people hear. BUT they learn to speak... and so usually don't learn sign language and can't be a part of the Deaf culture they were born into.

As a hearing person, it has taken me a long time to see it from the Deaf culture perspective. I know what I would do if my child were Deaf -- I would want them to be a part of my culture, the hearing culture. And looking at it from that perspective, I can see why parents who are deaf choose to have their children be part of their culture as well.

So back to a 'cure' for Autism. Like my perspective on Deaf culture, I can see both sides of the story. I know some Autistic adults who thwart the person-first language and WANT to be known as 'Autistic'. And some children who are having such a hard time coping with everything that goes on around them they can't take time to just be a kid and be happy and parents who are at a loss for helping them try to be happy and keep their family together.

Unlike my thoughts on cochlear implants, with Autism I don't know what I would do.

*for an interesting video on the cochlear implant debate watch 'Sound and Fury'

JoyMama said...

goodfountain - one difference between epilepsy and autism is that with epilepsy there's the EEG evidence that can make a positive diagnosis. With autism, there's no parallel test, so it has to be all about the symptoms... which makes situations like yours & Charlotte's so interesting. Such good questions about how to define the changes you've seen in her, and how to categorize them, and whether it matters. *So* complex, all the way around.

JoyMama said...

AuntieS - beautiful! *snif* Thank you. I was struggling with a paragraph around the tension or lack of tension between loving/accepting someone the way they are, and trying to ameliorate that which makes life difficult... but it wasn't coming out right so I skipped it. Love how you expressed it.

JoyMama said...

Mimzy - the parallel with Deaf advocacy is so interesting, isn't it? both with rejecting the person-first language and with the "cure question." Except that in the case of deafness, there IS the cochlear implant procedure, with all its pros and cons. I wonder if things would play out in the same way for autism if a similarly effective (yet problematic) "cure" were discovered.

Anonymous said...

Ooo. I'm good at rambling (run-at-the-keyboard.) Thanks for the extra permission!

"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."

I've read several parent posts (other diagnoses) with the attitude - if it (an alternative treatment) doesn't hurt and might help - why not? Without more certainty of benefit, the harm is that the parent wastes valuable emotional, monetary and time resources.

I plant myself squarely between neuroscientists/physicians and parents - knowing less and more of human neurology. Comparison of medical treatment of epilepsy and autism puts autism behind about a century.

Indeed, (as you said in comments, JM) "there's no parallel test, so it has to be all about the symptoms". The 'symptoms' of autism are behavioral, and behavior results from complex neuronal interaction. I think you can be relieved, my Friend, from the fictional dilemma of having to decide between 'taking the cure' and losing all societal support.

Alas, I do believe a known genetic marker will result in the same fate of many infants with DS. I know even less about genetics than neurology, and so, can not even come close to an expectation of that (holocaust).

Thank you so much for this post, JoyMama. And for your generous permission for me to leave lots of words here. BRatK

Tanya @ TeenAutism said...

I'm so glad you mentioned The Speed of Dark - I hadn't heard of it and would love to read it.

You've listed some great points about the cure issue. I've thought about it for years, and I think I'm in the deciding-not-to-decide camp, especially since it's hypothetical. It would be a hugely personal and individual decision for everyone, and it's unfortunate that not everyone would respect that.

JoyMama said...

Barbara - perhaps my dystopian pressure-fantasies did take things a little far. I think that pressure to pursue "cures" these days (though no parallel to cochlear implants has arrived on the scene) is actually more likely to come from other parents, bearing the implication that if you really *cared* about your child, you'd try Treatment X, Y, or Z.

Thanks for your musings!

Tanya, if you do read Speed of Dark, I'd be interested to hear what you think! And choosing not to stake out a hypothetical position is an eminently reasonable stance.

JoyDad said...

Yes we celebrate Joy's successes, and we will do whatever is in our power to help her to lead a fulfilling life.


I spend more time than I probably should thinking about the things that Rose can do that Joy can't. And the things that Rose will be able to do in her life that Joy probably won't. And I really really spend a lot of time fretting about the responsibility that will likely be thrust onto Rose because she will be the Joy's closest relative once me and JoyMama are gone. So if a cure came along that had low risks and a high chance of success, I absolutely would be tempted.