By Alison Singer
President, Autism Science Foundation
At the last International Meeting for Autism Research, I got a t-shirt from the National Database for Autism Research (NDAR) that says simply “Got Guid?”. A “guid”, or globally unique identifier, enables research participants’ data to remain anonymous in NDAR and other databases while also avoiding duplication of data across databases. But the idea behind “Got Guid?” also speaks to the need for everyone to become a research participant and get a guid. Yesterday, we got a guid.
According to the Interactive Autism Network, only 14% of children with autism have ever participated in a scientific study and only 4% of the siblings of children with autism participate in autism research. Compare this to pediatric cancer, where 95% of kids diagnosed participate in research and it’s no wonder that autism research seems at times to be moving so slowly. Each year, many important ASD studies are significantly delayed or not completed because researchers cannot find enough qualified participants. As a result, valuable opportunities to learn about ASDs are lost.
For several years now, my younger daughter has wanted to participate in autism research. At 11 years old, she has already studied the scientific method in school and understands how to develop a hypothesis, test it, and make sure to have controls. She has been volunteering at the autism walks since she was 5 and every summer she runs a lemonade stand to raise money for autism research. She knows how important autism research is and wants to contribute to science, but has been excluded as a control in autism studies because she is a sibling. But now work is being done looking specifically at “unaffected siblings”.
So yesterday we went up to the Yale Child Study Center, where Dr. Kevin Pelphrey is studying social perception and cognition in children with autism, unaffected siblings, and typical children . Dr. Pelphrey presented his data at the last IACC meeting and I was amazed. He showed that unaffected siblings had brain responses that were more similar to their autistic siblings than to typical controls and he has a paper in press in Proceedings of the National Academy of Sciences (PNAS) that will be coming out next week that reports on findings of this study. The goal of his current study is to replicate the previous findings and expand the study to include a larger group of children with autism and more unaffected siblings. This work is critical, as it could really help us to understand whether younger siblings have “recovered” from autism in that they have adapted compensatory brain mechanisms. This could enable us to develop strategies to help all children develop compensatory mechanisms.
Lauren participated in three fMRI studies in Dr. Pelphrey’s lab. The first was called “BioPoint”. In this study, she viewed point-light displays of human movement. Such displays contain motion information but no form information. Researchers compare the neural mechanisms involved in perceiving human motion (compared to a control condition of scrambled motion). The second study was called Cyberball. In this study, she played an interactive ball-toss game with two other fictitious players on the computer screen. There were different conditions in which she was either included or excluded in the game. The goal of this study is to examine the brain mechanisms involved in processing social exclusion in children with autism, siblings and typically developing children. A third study called Cybershape accompanied Cyberball. In this game, the players are instructed to throw the ball to a certain shape rather than following the implicit rules in social interaction (i.e., fair play where everyone receives the ball an equal number of times). There are different conditions in cybershape; the computer players might follow the rules or break the rules. The goal of this study is to examine the brain mechanisms involved in processing rule violation in children with autism, siblings and typically developing children.
There were certainly some highs and lows to the day. When she found out there would be math on the cognitive evaluation she objected. “Today is supposed to be a day off from school” she protested. But when they told her she’d get $50 for participating in the research the smile returned to her face. I think she has her eye on a pair of black boots at today’s Lord & Taylor charity shopping event (that shopping gene, by the way, is in no way de novo).
At the end of the day, I felt much like I did last week after I voted. Would our individual participation today really make a difference in curing autism? Probably not. But just like some elections are won or lost on a handful of votes, the breakthrough in autism science could come from the participation of just a few volunteers. We carried out our responsibility as citizens of the autism community. Not to mention, we “Got Guid”.
To learn more about participating in autism research, visit www.ianproject.org.
If you have a story you’d like to share about participating in autism research, send it to firstname.lastname@example.org