The Impact of an Autism Community
It has been a decade since the first families, children in tow, began arriving at university clinics across North America to participate in a special autism project. These families, 2,600 in all, answered questions, filled out surveys, gave blood samples, and even had their height and weight measured. They did all this to increase our understanding of autism spectrum disorder, which affects 1 in 68 children.
Together, they make up what scientists call the Simons Simplex Collection (SSC). Simons refers to the Simons Foundation Autism Research Initiative, which funds and operates this research project. Simplex means that each family had exactly one child with autism when they enrolled. And Collection refers to the assembled data that has been made available to other researchers. On this website, we know these families by another name: the Simons Simplex Community.
The information these families provided between 2006 and 2011 gave researchers a new tool for investigating questions about autism. Dozens of studies using SSC data have been published in medical and scientific journals. The SSC enabled ground-breaking research that showed that at least 20 percent of people with autism have new genetic changes that are associated with autism. Other studies explored an array of autism topics: behavioral challenges, speech development, sleep disorders, gastrointestinal problems, social stigma, sex differences, medication use, daily living skills, and even head size. One recently published study used SSC data to explore the "fever effect," a curious phenomenon in which some children with autism become more social, alert and chatty when feverish.
Another new study used SSC data to illuminate risk factors for obesity in youth with autism. The lead author of that study, Dr. Jack R. Dempsey, said the Simons project provided "tons of information" about both children and their families. "There was a lot of rich information about the core features of autism. The Simons Simplex Collection also had the Body Mass Index of the child and of the parents and usually a sibling," Dr. Dempsey said. This data enabled his team to explore family influences on children's weight in ways that previous studies did not.
That wealth of data speaks to the thoroughness of the researchers who first gathered it. It also speaks to the commitment of families, who spent one or two days at one of a dozen clinics in the U.S. and Canada. Parents answered dozens of questions, while their child with autism underwent extensive testing of autistic symptoms, intelligence, and functioning. Researchers even provided questionnaires to teachers if the child was school-age.
Those families' involvement did not end there. A majority of them later joined the Interactive Autism Network (IAN) so they could be contacted to take part in more studies, both online and at clinics. For example, in 2015 more than 400 families responded to a request to update researchers about themselves and their child with autism. Among other things, those updates helped researchers learn "how autism has evolved" in those children, explained Wendy Chung, director of clinical research at the Simons Foundation Autism Research Initiative.1
Some SSC parents also have agreed to be interviewed for articles by IAN. Often these interviews end with the mother or father saying something like, "I hope this helps someone else." That desire to help, in fact, is why many say they joined the original study years ago.
Has their participation done that – has it helped our understanding of autism? Absolutely yes, according to several researchers who have used their data. But judge for yourself. Find out exactly what scientists have learned about autism from the families of the SSC: https://www.iancommunity.org/ssc/opportunities#researchlist
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- SFARI. (2017). Simons Simplex Collection: Updated medical and educational data now available. Retrieved from https://www.sfari.org/2017/05/05/simons-simplex-collection-updated-medical-and-educational-data-now-available/