Autism at Shriver, part 1: Teens get moving, have fun

Eunice Kennedy Shriver Center teams with community to improve fitness

By Sandra Gray 2

UMass Medical School Communications

April 04, 2011

This week, as part of National Autism Awareness month, UMassMedNow will highlight some of the interesting research, education and service programs at UMass Medical School’s Eunice Kennedy Shriver Center in Waltham in a three-part series. Read about how the Medical School’s building turned blue on Friday, April 1, for World Autism Awareness Day and hear about the importance of “Light It Up Blue” for raising awareness of autism. 

Exercise is important for all kids, and there are many who do not get enough. But for teens with autism spectrum disorders (ASD), issues like unusual behaviors and social isolation can put up even more than the usual barriers to getting enough physical activity, putting them at increased risk for obesity and chronic health problems related to a sedentary lifestyle. Taking an innovative approach to overcome these barriers, a team of researchers at the Eunice Kennedy Shriver Center have helped the rubber hit the road or, more accurately, the sneaker hit the gym, for teens with autism.

Supporting Physical Activity and Recreation in the Community (SPARC) is designed to help teens with ASDs increase their levels of physical activity by engaging them as members of a walking club. Participants in the pilot program walked, or took part in similar noncompetitive group activities, at public facilities including playgrounds, parks and YMCAs. Guided with input from an active and engaged Community Advisory Board, made up of parents, community educators and a young adult on the autism spectrum, SPARC incorporated proven strategies guided by Applied Behavioral Analysis (ABA), the gold standard for successful autism interventions. Detailed pictorial “social stories,” which help prepare ASD teens for success with new activities in new settings, were also created for each activity.

Parents on the Community Advisory Board teamed to give SPARC an image and increased sense of purpose; a team mascot named Sparky and a colorful logo on T-shirts, posters and banners helped ensure that the program would be fun for the teens while encouraging camaraderie and a sense of belonging among them. These and other unique features of SPARC yielded encouraging results. Measurable fitness benefits, including increased duration and intensity of physical activity, were quantified by accelerometers, a kind of advanced pedometer.

“The model of involving the community really worked,” said Richard Fleming, PhD, associate professor of psychiatry and principal investigator for the National Institute of Child Health and Development (NICHD)-funded SPARC grant. “We are excited to take what we learned further with future projects.”

SPARC
Members of the SPARC Walking Club, a project of the Eunice Kennedy Shriver Center to help teens with autism get out, get moving and get fit in their communities, enjoy camaraderie with their peers while getting healthy exercise.


Dr. Fleming is also director of instructional design for the Shriver University Center for Excellence in Developmental Disabilities (UCEDD), one of just 38 such federally funded centers nationwide, where he works with a team of UCEDD faculty focused on health promotion for individuals with disabilities. Members include James Gleason, MS, PT, associate director of UCEDD; Linda Bandini, PhD, associate professor of pediatrics and director of nutrition for Shriver’s Leadership Education in Neurodevelopmental Disabilities (LEND) program; Heidi Stanish, PhD, adjunct assistant professor of family medicine & community health; Susan Wolf-Fordham, JD, senior project manager; Helen Hendrickson, project manager; Elaine Gabovitch, MPA, director of family and community partnerships for the Shriver Center; Carol Curtin, MSW, research assistant professor of family medicine & community health and associate director of LEND; Renee Scampini, MS, research coordinator; Elise Stokes, MS, board certified behavior analyst; and Mary Beth Kadlec, ScD, occupational therapist for YouthCare at Massachusetts General Hospital.

SPARC is just one of several projects the team has developed to improve health status for children with developmental disabilities. In fact, with significant and consistent funding from the National Institutes of Health, they have developed a well-rounded program of observational and translational intervention studies that complement and inform each other. Teens Recreation and Activity Choices (TRAC) is an observational study surveying three groups of adolescents—typically developing kids as well as those on the autism spectrum and with intellectual disabilities —as well as their parents. The soon-to-be-available distance learning project Discovering Behavioral Intervention: A Parent’s Interactive Guide to Applied Behavioral Analysis, will help families of children newly diagnosed with ASDs navigate their bewildering new landscape as they search for vital early intervention supports and services. And in a related effort focused on diet as well as physical activity levels, the Children’s Activity and Meal Plan Study (CHAMPS) strives to better understand the picky palates common among young children on the autism spectrum.

To learn more about how the Shriver Center helps individuals with ASDs and other developmental disabilities have the opportunity to lead safe, healthy, independent and productive lives, visit http://www.umassmed.edu/shriver/index.aspx.

The series continues on Wednesday, April 6, with a look at Shriver’s Autism Insurance Resource Center, a unique resource for information about medical insurance for autism treatment.

Related links:

Blue lights mark Autism Awareness Day