Autism research might best be considered a contact sport — as in, researchers would greatly benefit from stepping away from their lab benches long enough to meet and work with people on the spectrum and their families.
The field is replete with examples of how well this strategy can work. For instance, a close family tie inspired Kevin Pelphrey to investigate the causes of sensory overload in autism. In this report, Pelphrey writes about his daughter Frances’ difficulty dining in noisy restaurants, and how it prompted him to look for ways to quiet the cacophony. Several young scientists and scientists-to-be also describe how growing up with siblings on the spectrum motivated their work in autism.
In other cases, scientists have made course corrections or explored new research avenues after meeting people with autism. Close collaborations with people who have autism and their families offer opportunities for feedback that can greatly improve the effectiveness of a trial or treatment, says Laura Anthony.
But how can scientists convince people who have autism to contribute to research? Scientists with success in this arena share their creative approaches for recruiting participants for clinical, educational and behavioral studies. It’s particularly important to have studies be diverse in every way — race, class, ethnicity and gender — to gain the broadest possible perspective on autism. Minorities are woefully underrepresented in autism research, but a few teams are beginning to find ways to reach those communities.
Connecting with the autism community can be equally important for protecting affected individuals: For example, careful word choice can prevent dangerous misunderstandings about the condition and promote positive perceptions of people with autism. It can also help people sort fact from fiction when it comes to autism therapies. Researchers have a responsibility to speak up and prevent people from trying treatments before they have been vetted in large-scale trials.
To round out these perspectives, we have included articles from our archives. We hope this special report prompts a spirited dialogue about how to make sure that all of the best players are involved in autism research.