This is a blog post by Marianne Sullivan, RN, MN, the Assistant Director of National Outreach and Resources at Autism Speaks, and the mother of an adult with autism.
“Please come pick-up your son, things aren’t working out here at Camp Winnebago.” If you haven’t already received a call like this, you probably will in the future. As parents of people with autism, many of us have waited for the telephone to ring with the person on the other end of the phone letting us know that it isn’t working out for our son or daughter at camp or art class or at another community program. Every day, the Autism Speaks Autism Response Team receives calls from families who tell us about how their child has been excluded from something.
Based on an Autism Speaks survey taken in September 2012 about youth with autism and community youth organizations across the country, we've learned details of the many barriers faced by families who want their children to fully participate in youth programs.
More than 1018 people from 48 states responded to the survey. The survey results help us better understand what needs to change in order for more people with autism to be included successfully in youth organization programs.
Details of the Autism Friendly Youth Organization Survey
This survey assessed the needs and wants of parents /caregivers of children with autism in the area of youth organizations. Of the 1,018 respondents, 83% were parents or caregivers of male children and 17% were parents or caregivers of female children with autism.
· When asked about the organized youth activities they would like made available to their children, team sports and camping/outdoor adventures topped the list.
· The key unmet needs families experience in relation to youth organizations are:
o Staff educated on autism and trained on effective interventions to help people with autism
o Programs and/or summer camps offering adaptive services for people with autism
o Affordable programs
o Opportunities for socialization with neurotypical children
· Of those respondents whose children participate in youth organization programs:
o 56% felt that their child was moderately or extremely safe while 18% felt their child was not safe at all.
o 57% were moderately or extremely satisfied with the program their child participated in while 19% were not at all satisfied with their current program.
· The top barriers that families experience to having their children participate in a youth organizations are:
o Lack of programs specifically designed for children with autism (55%)
o Lack of behavior management services (50%)
o Untrained staff (50%)
o Expense of the program and lack of scholarships (48%)
· Survey respondents felt the key training needs for youth organization staff that Autism Speaks should address were behavior management, tips for working with people with autism, communication strategies, and activity safety risks like wandering, hypothermia, drowning, etc.
The results of this survey make it clear that children on the autism spectrum are terribly underserved by America’s youth organizations during out-of-school times.
The survey results echo what is well documented in professional literature - the importance of staff and volunteer training is critical to youth-serving organizations. Based on these findings, Autism Speaks has committed to working with national experts and youth organization leaders to provide awareness and training that will prepare staff and volunteer in youth programs on appropriate ways to interact with, mentor, and support youth on the autism spectrum. The goal is to maximize inclusion of people with autism in their local communities.
Stay Tuned! Leading the Way: Autism Friendly Youth Organizations , a guide for families and organizations to help include youth with autism in community programs, is coming out later today!