Research Priorities

At Technology Review, John Elder Robison writes:

We’re sinking millions into the search for a “cure,” even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts. Most of us live with a mix of exceptionality and disability. I know I do.

Research into the genetic and biological foundations of autism is surely worthwhile, but it’s a long-term game (see “Solving the Autism Puzzle”). The time from discovery to deployment of an approved therapy is measured in decades, while the autism community needs help right away.

If we accept that autistic people are neurologically different rather than sick, the research goal changes from finding a cure to helping us achieve our best quality of life.
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We can make life better for the autistic people who have major cognitive and functional challenges that today’s science can’t fix. We have a duty to make their lives better through applied technology. We owe it to our most disabled brothers and sisters to do all we can to ensure their security, safety, and comfort.

So how might this change in research direction come about? For one thing, we can put autistic people in charge. The fact is, researchers have treated autism as a childhood disability, when in fact it’s a lifelong difference. If childhood is a quarter of the life span, then three-quarters of the autistic population are adults. Doesn’t it make sense that some of us would want to take a role in shaping the course of research that affects us?