Monday, May 11, 2009

My take on the "cure" debate

I figure that most people who check out this blog are familiar with the conflict between the neurodiversity community (I count myself as a member) and the "cure" crowd.

"Curebies," as they are sometimes referred tend to see "autism" as something that "stole their kid from them," had a single identifiable cause, and (if we only work, spend and wish hard enough) can be "cured" - leaving a "normal" kid in place of the kid with autism. Jenny McCarthy, who was hard to avoid on the talk show network last month, is a prime example of a "curebie."

What do neurodiversity advocates want? Well, here's a brief description from the Autistic Self Advocacy Network (ASAN):
ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.

ASAN initiatives include the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), an active Speaker's Bureau and advocacy in support of autism and disability-related issues such as de-institutionalization and community living supports, educational opportunity and inclusion, employment supports and other initiatives at both state and federal levels.
Notice that there's nothing about "curing" autism in terms of their advocacy efforts.

So what's my take on "cures?"

I think that the pro-cure vs. anti-cure description promoted by cure enthusiasts invites all to ask the wrong questions.

Stepping aside from autism for a bit, let's look at two other famous people pitching for "cures."

Jerry Lewis has spent decades pitching for a "cure" for muscular dystrophy and related neuromuscular conditions (my partner has one of those other conditions). A moment of critical thinking on the part of the public is that any "cure" can only stop a progressive condition where it is - it can't replace lost muscle or effect a change that will help a 20-year-old with Duchenne muscular dystrophy walk. It can only prevent disability of any kind if the cure is administered soon after onset.

Similarly, Christopher Reeve popularized spinal cord research with the promise that he would walk again. Spinal cord injury research is important and promising. It may someday restore some movement and sensation to people to people long affected by their disability. But the only people it will prevent disability in are the newly injured. The idea that any cure will counter the bone loss and muscle atrophy of a person who has spent years without use of their legs was - and still is - a fantasy.

So how about autism and other neurological conditions?

Interestingly, I have a neurological condition with an identifiable cause.

I developed hydrocephalus within my first few months as a result of birth-related injuries.

Left untreated, hydrocephalus will result in progressive physical and cognitive disability - and probably an early death.

So I have this tube in my head that was inserted through the right side of my brain and goes into the ventricles - it drains fluid from the brain down into a chamber in my heart.

So - further disability was halted and I've gotten to live a pretty long and enjoyable life by the most important standards I know - my own.

It doesn't mean that I don't have disabilities.
I am a veritable smorgasbord of neurological "soft signs."

So how do I translate that when it comes to autism? Like this:

The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or divergent development.

What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.

I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.


So, for me, it's not a matter of being "anti-cure" as much as it is a matter of tilting against windmills. And I should explain that to me, there is nothing admirable about tilting against windmills. Don Quixote thought he was fighting giants, which would be admirable. There is no
point in fighting windmills. Unlike many people, I see nothing romantic about the story - just a sad parable about wasting your energy on the wrong target.

And even if you could alter the brain that radically, would the kid or adult after the "cure" be the same one as the one who previously inhabited the body?

I don't have an answer for that last one. --Stephen Drake

PS - If anyone is curious about what sparked this sudden venture into the world of neurodiversity and the issue of "cures," check out today's entry on the NDY blog.

15 comments:

Outside the Circle said...

You have it just right. This ties in very nicely with my own views on what "curing" autism would entail. What makes an "acceptable" difference?

abfh said...

While I agree with your main point that different parts of the brain do not develop in isolation, I am not persuaded that an autistic person's brain is operating differently than it was "originally designed" to do. Given the lack of scientific knowledge as to how our genes and environment interact in neurological development, I'm not sure it can be said that anyone's brain was "originally designed" to develop according to a specific pattern.

As for cure, I wouldn't consider myself to be in conflict with people who would like to alter (or cure, if they prefer that wording) some aspect of their brain that they dislike, provided that it is genuinely a matter of individual choice and not social coercion. I think that's part of neurodiversity too, especially as we move toward a more technologically advanced society in which people will have the option to change many things about their brains and bodies.

At present, the word "cure" is often used in ways that have coercive or pejorative connotations, but that is not necessarily inevitable. I tend to think that, as with most disputes, much of the disagreement is caused by people using the word "cure" to mean different things.

Stephen Drake said...

Outside the Circle,

thanks - there is some convergence between what we've written.

abfh,

I might regret part of the wording on that, although I'm one of those that thinks that a million or more years of evolution has brought a certain amount of pressure on how our neurological systems develop.

It's also a view skewed to my own situation, in which my own neurological differences are tied to early injury and (hate to say this) pathology.

Like you, if people, adults especially, can make an informed choice about a "cure," I sure won't be getting in their way. I just hope the cure is as presented - there have been some minor scandals with spinal cord research.

As for the future... I think we're a ways off from people altering their brains in ways that they can have confidence in. I doubt you'd find me in line.

R.A. Lafferty has a line introducing a short story once that said something like "I'll gladly burn in hell, as long as it be me that burns."

It would take a lot for me to risk the slightest chance of me not being me any more. --Stephen

RachaelZ said...

Well said. I've been struggling in how to respond to this issue and your post struck me in that instead of working so hard to say why or why not I'm for any "cure," I should be focusing my energies elsewhere. Besides, there are no magic wands to wave over my son and say "voila, you're normal" because isn't being "normal" a myth anyways? Look forward to more dialogue on this issue!

sanda said...

Thanks for the "cross posting" link. I just found you here.

On brain function, I only really know my own neurological "stuff". Today, in England, is ME/CFS Awareness Day. (I have CFS/ME chronic fatigue syndrome/myalgic encephalomyelitis and neurologic
plus other results of the illness.)

I wanted to say hello and to say, since you mentioned Christopher Reeve, that he died within a minute or so of receiving an injection of antibiotic. Irony.

abfh said...

a million or more years of evolution has brought a certain amount of pressure on how our neurological systems develop.

True enough, and I didn't mean to argue to the contrary. To be more precise, I believe that the current state of the science, which is still in its very early stages, does not support an assertion that the autistic pattern of development is pathology rather than "original design." There are many unfounded biases skewing autism research toward a deficit model, as Michelle Dawson has just blogged.

Nicole said...

I encourage you to visit www.specterforthecure.com to see how together, we can unstrangle the cure and medical innovation with Sen. Arlen Specter's help. There is hope! www.specterforthecure.com

Stephen Drake said...

abfh,

I don't spend nearly as much time as I should trying to think about the ins and outs of neurodiversity, the medical model and the bias toward deficits you mentioned, linking to Michelle Dawson's blog.

Expect me to be fumbling and a little inarticulate as I start writing about these issues in terms of my own life and experiences.

BTW, the deficit model *dominates* the NLD definitions and research literature. The label is relatively new and there are very few of us who identify as NLD who are speaking for ourselves.

Terri at Barriers, Bridges and Books has an account of the barrage of negative crap she got thrown at her when she was told her son was an NLDer: http://bbandbohmy.blogspot.com/2009/03/non-verbal-learning-disorder-and-us.html

Stephen Drake said...

Nicole,

Did you bother to read what I posted here? Or are you a spammer?

(So far, I've been able to operate this blog without moderating comments - I am hoping to keep it that way.)

thecatsmeow said...

Well, I'm one NLDer who's been trying to "speak for myself" (as you suggest in your comments here), and I may very well someday wind up writing that book that I've been trying to come up with since high school. Today was a day full of the frustrations of my particular spin on that neurology, and although I've surely found myself questioning the whys and wherefores of it, I would not seek a "cure" per se. I'm a much bigger fan of the neurodiversity concept, which encompasses all of us no matter how our brain functions (or doesn't). I never was one much of the idea of "normal", anyhow!

Stephen Drake said...

(sorry for the absence - been busy with trolls)

Rach - I think it would be great if you decided you wanted to devote some time to blogging. You've got an incredible amount of experience and information - and now the most incredible new experience of being a mom. I would look forward to reading it if you decide to do it.

thecatsmeow,

Yep, I know that you and a few others are out there writing in blogs or other arenas. But it still amounts to a pretty small group. Heck, we can't even agree on the appropriate acronym for nonverbal learning disabilities (or is it disorders?) yet. :-) --Stephen

sanda said...

Do you have a link so I can read more, in "lay person" language, on what nonverbal learning disability is about? Or give one yourself?

Over the decades, I have learned, via many friends' disabilities, about other neurological symptoms in addition to my own. As a general statement, not related to autism, I have observed that people with disabilities mostly know our own. Sometimes, I have found, it is almost as difficult as communicating with someone not disabled, to "explain".

sanda said...

I just got to read your March 6th, entry, which gives a basic answer to my question (above or below) (one cognitive problem of CFS/ME is "inside, outside, upside down" Dr.Seuss kind of thing).

Lee said...

I notice that a lot of people use "cure" to mean "no longer rocking, head banging, whatever", which is weird. Your brain might be affected by doing or not doing things, but if you have autism, you have had a fundamentally autistic long before birth.

Nothing can really fix that nowadays, and perhaps it will never happen. That's fine with me, honestly. I'm learning to like my brain.

Stephen Drake said...

Lee,

It took me awhile to "learn to like my brain." I was often at odds with it - especially the parts dealing with dsypraxia. I kind of thought of those parts of my brain/neurological functioning that sometimes hindered me as "not me" - that was a false and unhelpful way for me to look at it. Realizing that the "total package" is "all me" was a good start to being happier and more generally functional. Too many things in this world to fight against without adding oneself to the list. :-) --Stephen