This is a blog post by Lisa Goring, Autism Speaks Vice President, Family Services.
A recent research study funded by Autism Speaks reached a conclusion that probably would surprise few in our community: Teens with an autism spectrum disorder (ASD) often face major obstacles to social life outside the classroom. Given that one of the hallmark features of autism is impaired social interaction, it’s not hard to imagine why teens on the spectrum typically have difficulty making friends and participating in social activities, especially outside of school. Unfortunately, social challenges are often considered the norm for kids growing up with autism. But this needs to change. The good news is that change is underway.
Innovative approaches – ranging from group golf lessons to Girls Night Out - have been launched across the United States with the support of Family Services Community Grants from Autism Speaks. Their goal is to improve the socialization skills of teens and young adults with autism. The research study was originally funded by Autism Speaks as a Pilot Grant in 2010 and then published in the November 2011 issue of PLoS One by a team led by Paul T. Shattuck, Ph.D., of Washington University, in St. Louis.
The study analyzed data collected from a large number of adolescent students with autism enrolled in special education. When compared to students with other special education needs, such as learning disabilities, mental retardation* and speech-language impairment, teens on the spectrum are significantly less likely to see friends out of school (43.3 percent), never to get called by friends (54.4 percent) and never to be invited to social activities (50.4 percent). Empirical data such as the information from this study helps drive awareness and decision making. Based on these results, we now know with more certainty that many adolescents with ASD struggle to fit in with their peers. Backed with facts and figures, we can advocate for additional services and supports, target our research toward social skills interventions, develop better policies, and, ultimately, create more and better services and programs. In this case, the research reaffirms the need for initiatives such as the Family Services Community Grant program that Autism Speaks created five years ago with two goals in mind: 1) to build the field of services for individuals with autism and 2) to expand the capacity to effectively serve this growing community.
In addition, a Transition Tool Kit was created and launched last year to help guide the transition from adolescence to adulthood. Both cases demonstrate how Autism Speaks is providing solutions to help families address real challenges identified or documented through research. The Community Grants [JSS1] are designed to meet needs in education, recreation and community activities, and specifically [JSS2] young adult and adult programs. Among the elements that go into a successful proposal are innovation and the ability to be replicated elsewhere. To date, Autism Speaks has funded 193 community grants totaling almost $4.0 million across North America. A sampling of recent grant awards demonstrates how community initiatives across the country are addressing the need for social activities targeted to teens and young adults. Here are a few examples:
- Several suburban school districts outside of Philadelphia banded together to organize “Acting Antics,” a program using live theater as a way to teach social cognition skills. Student actors perform in short scenes with a partner, each assuming the persona of a particular character. The exercise requires each student to consider the character's perspective, creating an opportunity to teach this skill in a fun and non-threatening manner. The Autism Speaks grant will be used to expand the program to other school districts.
- In Kansas City, a Girls Night Out program was established through the University of Kansas to build social competence and self-care skills for teen girls on the autism spectrum. The sessions take place in community settings such as a hair salon, coffee shop and gym. The community grant from Autism Speaks will be used to provide opportunities for girls with ASD to interact with typically developing peers during age-appropriate activities while improving social competence, friendship development, social skills and improved self-care skills.
- Golf was the theme of "Far from Par," a summer golf program for 16 middle and high school students in Bergenfield, N.J., that set out to improve communication, social and physical skills, and help the students forge closer bonds with peers, siblings and parents. The Family Services grant enabled the program to double attendance.
- The Outdoors for All Foundation, in Seattle, was awarded a grant to expand its outdoor recreation program for children and adults living with ASD and their friends and families. The foundation was also able to design a week-long adventure camp for teens with high functioning autism as a result of their grant.
Our research funding will continue to help us target our family service grants toward specific areas of need and also allow for the development of new and more effective autism services. We will continue to make use of those research findings to develop and expand new programs is equally important to improve the quality of life of teens and young adults on the spectrum. Autism Speaks would like to thank its supporters for helping us fund our science and family services grant programs. *Although current consensus in the field eschews us of the term “mental retardation” in favor of “intellectual disability”, the study authors used the mental retardation term “to be consistent with the special education legislative definitions of the various disability categories and the way the survey data were collected.”