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.