Families throughout Washington and parts of Oregon and Idaho have two opportunities to help University of Washington researchers unlock some of the secrets of autism, a spectrum of developmental disorders that now affects about one out of every 150 children born in the United States.
Researchers at the UW’s Autism Center are currently recruiting families for two separate projects. The Early Steps Study needs 40 families with babies 12 to 24 months of age who are at high risk for developing autism and live in the Seattle area. The other study, the Simons Simplex Collection Project, is looking for 100 families, each of which has one child between the ages of 4 and 18 who has been diagnosed with autism.
For the Early Steps Study, families must already have one child who has been diagnosed with autism and a 12-to-24-month-old sibling who is showing early symptoms of autism. These symptoms include not making noises or attempting to communicate, not smiling at parents, not responding to their name, not making gestures and a lack of social playfulness.
Families in this study must live with in a 30-minute driving distance of the university because of the intensive nature of the intervention and prevention components of the research, according to Annette Estes, associate director of the UW Autism Center and an assistant professor of psychiatry and behavioral science.
This study is a follow-up to another research effort testing an autism prevention program developed by researchers at the UW and the University of California, Davis that is just winding up. Families participating in Early Steps will go through a telephone screening process and a three-session diagnostic evaluation to see if their child has symptoms of autism. Children also will be given a medical evaluation.
Families selected for the study will be randomly assigned to one of two groups. A control group will be referred to approved community agencies for treatment and the children will be reevaluated three times over the following 2 ½ years. The other families will be assigned to a clinician at the UW who will coach a parent in techniques to work with their child. This will be followed with intensive in-home treatment. A therapist will make twice-a-day two-hour-visits (20 hours a week) to each family for two years. These children also will be reevaluated three times during the study for symptoms of autism.
“Research has shown that the earlier the intervention the better the outcome in treating children with autism,” said Estes. “One of our on-going goals is to be able to identify autism as early as possible before obvious symptoms show up so we can intervene while the connections in a child’s brain are plastic and can be normalized.”
The Simons study is recruiting families with one child diagnosed with autism throughout Washington as well as in parts of Oregon and Idaho. This study is focusing on families with a single case of autism in an effort to answer questions about the most common and unexplained form of autism.
To be eligible for the study, both biological parents must be willing to participate and give blood samples along with their child. In addition, if there are siblings over age 4, one would be asked to give blood, said Raphael Bernier, an assistant professor of psychiatry and behavioral science who is directing the project at the UW.
Aside from the blood draws, the primary caregiver in families selected to participate will be interviewed about the family and the medical history of the child with autism. Each child also will be given a diagnostic evaluation that includes cognitive and neuropsychological tests. This process takes about four hours and families will be paid $250 for their participation.
The UW is participating in the Simons Study with 12 other institutions in the U.S. and Canada, which is designed to collect DNA samples from 2,000 families that have a child with autism. The UW researchers already have collected samples from 100 participating Northwest Families. Eligible families can live anywhere in Washington and in the greater Portland, Salem and Bend areas of Oregon and the Boise and Coeur d’Alene areas of Idaho.
“From studies it appears that much of autism may be caused by spontaneous changes in the genome. We want to get a better look at what is happening in the genetics among families who have a single child with autism. We hope to use the data we and our partners are collecting to help develop interventions and treatments for the vast majority of cases of autism,” said Bernier.
Families that would like to volunteer for either study or who have questions, may get additional information, by contacting Emily Champoux, project coordinator at 206-616-2889 or 1-800-994-9701
The two studies are being funded by the National Institute of Child Health and Development and the Simons Foundation, a New York philanthropic organization, respectively.