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Features / Special Reports

Fostering partnerships for autism research

12 May 2016

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.


Featured Articles

Julia Yellow

Testing school-based autism treatments takes teamwork

by  /  12 May 2016

Partnering with families and teachers is the only way to make autism interventions work in the community.

Service with a smile: At the Citrus Diner in Virginia Beach, the staff turns down the music when Kevin Pelphrey and his daughter, Frances, arrive for breakfast.
Annie Pelphrey

How dining out with my daughter inspired my autism studies

by  /  12 May 2016

Restaurants can be stressful for my daughter Frances, who has autism, but her difficulties led me to try to better understand and treat her type of situational anxiety.

Julia Yellow

Scientists must curb tendency to try untested treatments

by  /  12 May 2016

People may misconstrue basic research as ready remedies, so scientists must work to prevent misinterpretation of their findings.

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How to successfully recruit participants for autism studies

by  /  12 May 2016

Many families don’t have the time or motivation to participate in research. So how can scientists recruit them?

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Sibling bonds inspire next generation of autism researchers

by  /  12 May 2016

Growing up with a brother or sister on the spectrum motivates some young people to devote their careers to investigating autism.

JULIA YELLOW

Firsthand experience with autism can spark new science

by  /  12 May 2016

Meeting people with autism can give scientists new ideas and the motivation to pursue long-term studies.

Julia Yellow

Questions for Laura Anthony: Teaming up to improve research

by  /  12 May 2016

Partnering with families affected by autism may make research more relevant, fun and likely to succeed.

Julia Yellow

Before talking about autism, listen to families

by  /  26 January 2016

Scientists should phrase their findings to be sensitive to the dignity and needs of people with autism.

Pep Boatella

Autism’s full spectrum

by  /  4 May 2016

Minority families often miss out on treatment or get left out of research — an ethical failure. New projects are illuminating autism’s diverse shades.

From The Archives

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Alberto Ruggieri
Oksana Grivina
20150707blogparentscientistbeliefs
Guevork Lazian
Pep Boatella
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TAGS:   autism
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