A View from John Elder Robison
Fixing Autism Research
We need to come to grips with what autism really is.
Autism researchers have published thousands of papers in recent years. With those numbers, you’d think we’d all be rejoicing over great progress. Yet many people—especially autistic adults—are frustrated by how little benefit has actually materialized. Why?
The simple answer is, we’re studying the wrong things. 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.
Here are some ways we can do that:
We can remediate the crippling conditions that accompany autism. Anxiety, depression, seizure disorders, sleep disorders, and intestinal distress are the big ones, but there are more.
We can help autistic people organize their lives, manage their schedules, and regulate themselves in the face of sensory overload. Many of the things we ask for—like quiet spaces or calm lighting—are comforting to most anyone. But for us they are critical.
We can offer engineering solutions to the things autistic people can’t do naturally. Some formerly nonverbal autistics talk through handheld tablets, and make friends with computer assistants like Siri. We’re now seeing machines that read expressions even when we can’t. Computers can improve anyone’s quality of life, but we stand to benefit more than most from applied technology.
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?
If you’re a researcher with an interest in autism—and you want to really make a difference—open a dialogue with autistic people. Ask what they want and need, and listen.
John Elder Robison is a professor at the College of William & Mary and the author of Look Me in the Eye.