A View from John Elder Robison Autism researchers have published thousands of papers in recent years. With those numbers, you think we all be rejoicing over great progress. Yet many peopleespecially autistic adultsare frustrated by how little benefit has actually materialized. Why? John Elder Robison The simple answer is, were studying the wrong things.dollar essay Were 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 its 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 forlike quiet spaces or calm lightingare comforting to most anyone. But for us they are critical. We can offer engineering solutions to the things autistic people cant do naturally. Some formerly nonverbal autistics talk through handheld tablets, and make friends with computer assistants like Siri. Were now seeing machines that read expressions even when we cant. Computers can improve anyones 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 todays science cant 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 its a lifelong difference. If childhood is a quarter of the life span, then three-quarters of the autistic population are adults. Doesnt it make sense that some of us would want to take a role in shaping the course of research that affects us?
If youre a researcher with an interest in autismand you want to really make a differenceopen 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 inside of Talent. Biomedicine
