The Science Side - How Do We Improve Life for Adults with Autism Here and Now?
A conversation between Anne Roux and John Elder Robison
August 31, 2015
Our conversations these days at the Life Course Outcomes Research Program often turn to the topic of where our work should focus. What research will make the biggest difference in the lives of people with autism and their families? Which questions are most important to ask? We turned to autistic adult John Elder Robison for insights.
Anne: Why does autism research need to focus on both the long and short term questions?
John: The biggest problem here and now is very simple: Genetic research is an extremely long term game. The timeline to start a study like this, make a discovery, translate that to a possible treatment, and then get that treatment tested and FDA approved is 10 years at a minimum, and more likely 20 years.
So this effort won’t help any of the autistic children today. Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better or for worse.
There is a second and larger issue to consider. Genetic research is by definition directed at “cure;” whether by using medication to head off anticipated disorder, or by using genetic assays to prevent births of potentially disordered infants. Given the broad range of the autism spectrum – from genius to intellectually disabled – an exclusively cure-oriented approach to the spectrum faces some serious ethical challenges.
Anne: So, where should we focus efforts and funding to improve life for adults with autism?
John: What we need right now are therapies to help us be the best we can be, as we actually are. We need tools to help us overcome physical limitations. We need solutions for the medical problems that plague many people on the autism spectrum. Those are things autistic people – child and adult alike – want and need right now. The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.
We also want societal change and acceptance. We want sensory friendly workplaces. We want jobs shaped to our different abilities. We want help navigating the education and employment mazes. We want to be productive members of society. Those too are things we want and need right now. They too are attainable given the resolve, budget, and legislation to back it up.
I’m a big believer in science, and I absolutely understand that genetics may one day solve the riddle of why some people have spontaneous genetic mutations that lead to severe intellectual disability. It’s led to some important discoveries and it will surely be key to more. But how many individuals who live with intellectual disability today will be helped by that? How many autistic job seekers will get a job, thanks to that work? How many autistic kids who wander dangerously will suddenly become safe? How many autistics that suffer from anxiety or gastric distress will suddenly relax in comfort? Those are a few of the very real issues autistic people are actually thinking about now, and genetics isn’t one of the answers on tomorrow’s table.
Anne: What is the bottom line for researchers?
John: We should be Helping Autistic People – Right Now. When we consider a piece of research - and much is needed - we should never lose sight of the fact that people need help today, not in ten years. Basic science is good, but applied engineering gets the roads and dams built. That is a very apt analogy for our situation.
Autism researchers whose work is funded by government agencies should never lose sight of the fact that they are answerable – at least morally – to the US taxpayers. When considering a piece of research, ask yourself if an average autism stakeholder (an autistic person or family member) would support the work if its purpose and potential were fully explained to them. Too much of the work we have done fails that simple test.
There’s another very important bottom line for researchers: Consult actual autistic people when you design your studies. There are a lot of us in college communities, and we’re eager to help. Not only that, but we are the ones who know our needs best. When you look for problems to solve in the autism world – ask us first!
At William & Mary in Virginia – home of the first neurodiversity initiative at a major American University – we formed a student group to build awareness on campus and connect the neurodiverse community. Our student group is now working with researchers to design meaningful studies, and to obtain buy-in and volunteers from the local autism community. That’s an example of teamwork and community involvement that I’d like to see at every university.
John Elder Robison is an autistic adult and a member of the federal Interagency Autism Coordinating Committee which publishes strategic plans to direct our nation’s autism research activities.
Anne Roux, MPH, MA is a nationally renowned autism researcher, author and family advocate. She leads the production of our National Autism Indicators Report series and other publications.
The views expressed in this blog are the author's own and not necessarily those of the Life Course Outcomes Research Program.