Today Drexel University released the first comprehensive report that describes what happens to youth on the autism spectrum between high school and their early 20s. "These statistics put numbers behind the stories we often hear from families describing the challenges of entering adulthood - often without help."
Below is a post by Paul T. Shattuck, PhD, Director and Anne M. Roux, Research Scientist, of the A.J. Drexel Autism Institute’s Life Course Outcomes Research Program. The post is the authors' perspective on today's National Autism Indicators Report on autism and adolescent transitions. Dr. Shattuck is a member of the Autism Speaks Family Services Committee. Read the full press release here and the full report here.
Children grow up, and autism does not end when children reach adulthood. In the U.S., an estimated 50,000 youth with autism leave high school each year. As the numbers increase, so do the stories of pressing challenges families face as youth enter adulthood - the longest segment of their lifespans. Nationally, we have a lack of attention to issues of adult autism and many gaps in our knowledge about the needs of these young adults.
Our team just published the National Autism Indicators Report: Transition into Young Adulthood -- the first comprehensive report that describes what happens to youth on the autism spectrum between high school and their early 20s. The report identifies the indicators now available and serves as a call to action to fill the remaining large gaps in knowledge.
Why Do We Need Indicators?
If you've ever driven a car then you already know what an indicator is. The speedometer indicates how fast you're going. The odometer indicates how far you've gone. The gas gauge indicates how much fuel you've got. A driver relies on information from these indicators to help obey the speed limit, measure progress to reaching a destination, and know when more gas is needed to keep the car running.
When it comes to understanding how well our nation is helping youth affected by autism, our situation is like driving a car through the fog with no dashboard. We know we're moving. But we do not have many indicators to tell us how fast we are going, whether we're getting close to our goals, or what kind of mileage we are getting from the resources fueling our trip.
The findings in the National Autism Indicators Report give us some indicators – baseline information about how young adults with autism fare in the transition into adulthood. These statistics put numbers behind the stories we often hear from families describing the challenges of entering adulthood – often without help.
Over half of young adults work, and about one-third continue their education. Some do both. But one-third of all young adults with autism do neither. They are disconnected from the outcomes that special education was targeting.
Many services decline when young adults with autism transition into adulthood, a decline that is aptly known as a “services cliff.” Our study finds that 26 percent of young adults on the autism spectrum, and 28 percent of those who are unemployed and not in school, did not receive services, which could have helped them become employed, continue their education or live more independently. We looked more intensely at this issue of disconnection as young adults with autism have a different pattern of entering adulthood, taking longer to become connected and find adult social roles. Further, this report is one of the first to look at issues of safety and risk.
The needs of people on the autism spectrum vary widely. The few indicators we currently have don’t give us clues about who needs what types or help, or how much help they need. It will be infinitely difficult to plan on a large scale, evaluate efforts, allocate funds, and ultimately, improve quality of life for adults with autism, if we continue to exist in a data desert.
Families, service providers, policymakers and adults with autism themselves need credible information for making informed decisions about adulthood. We need a foundation of knowledge upon which to build supportive public policy, and private-public partnerships, addressing services, living arrangements, social participation, employment, postsecondary education, physical and mental, safety and other domains. Improving quality of life begins with knowing how adults are faring and what’s needed to better support them.
Paul Shattuck leads the Life Course Outcomes Research Program at the AJ Drexel Autism Institute in Philadelphia. His team is building a base of knowledge about the things other than clinical interventions that promote positive outcomes for people on the autism spectrum and their families and communities. Anne Roux is a research scientist at the Life Course Outcomes Research Program and the lead author of the National Autism Indicators Report.
Autism Speaks has a multitude of resources to help families of individuals with autism prepare for the transition to adulthood. In addition, Autism Speaks has awarded over $2.25 million in funding to programs and supports for young adults and adults with autism.
Preparing for Transition
- The Transition Tool Kit was designed to serve as a guide to assist families of individuals between the ages of 14 and 22 on the journey from adolescence to adulthood. The kit contains information on topics like self-advocacy, community living, postsecondary education, legal matters and more.
- The Community-based Skills Assessment, developed through a contract with Virginia Commonwealth University’s Rehabilitation Research and Training Center, is a tool to help parents and professionals assess the current skill levels and abilities of individuals with autism beginning at age 12 and continuing into adulthood in order to develop a comprehensive personalized transition plan.
- Identifor is a new website and app designed to help parents and individuals understand their own (or their child's) skills, abilities and interests using games in order to develop a personalized transition plan.
- The Postsecondary Educational Opportunities Guide helps young adults and their families explore the various opportunities and learning environments available after leaving high school. This tool kit offers the best possible resources on the topic of postsecondary education to help families explore all of the various options available.
- The Brian and Patricia Kelly Postsecondary Scholarship Fund selects eligible colleges, vocational/technical schools and transition programs in the United States to identify qualified students or clients with Autism Spectrum Disorder and offer scholarship funds of up to $5,000 per student and $25,000 per program.
- The Employment Tool Kit provides young adults and adults with autism with tips and tools to help them research, find and keep employment in the current competitive labor market.
- Additional employment tools include An Employer's Guide to Hiring and Retaining Employees with Autism Spectrum Disorders, A Parent's Guide to Employment for Adults with Autism Spectrum Disorders and an Autism in Big Business Report.
Housing and Residential Supports
- The Housing and Residential Supports Tool Kit was developed to assist individuals and families as they identify and secure appropriate residential supports and services by providing an overview of housing options and tools to help access these services.
- A Housing and Residential Supports catalog to search for local housing services in your area.
- Autism Speaks is committed to increasing services and expanding opportunities for the rapidly growing population of young adults and adults with autism. To that end, we have launched a Housing and Community Living initiative to increase access to housing and residential services of adults with autism by reducing HCBS waiver wait lists and improving housing vouchers, and to expand the capacity of service providers who care for them. Sign up to join this initiative HERE.
- The AGI Daily Living/Residential Curriculum for Direct Support Providers. funded by Autism Speaks, is the first-of-its-kind training designed to build capacity in residential adult services wherever adults with autism live, including in private homes with their families, group residential settings, assisted living, agricultural, and intentional communities.
For help finding additional resources, contact the Autism Speaks Autism Response Team at email@example.com or 888-288-4762 (en Espanol 888-772-9050).