IES Blog

Institute of Education Sciences

Challenges in Transition to Adulthood for Individuals with Autism

An Interview with Researcher Leann Smith

Conducted by Kim Sprague, NCSER Program Officer

According to the Centers for Disease Control and Prevention, approximately 1 in 68 children have an autism spectrum disorder (ASD), a group of developmental disabilities that can cause significant social, communication, and behavioral challenges. While the National Center of Special Education (NCSER) supports research on ASD through their grants program, few projects have focused on the needs of adolescents and young adults with ASD as they transition out of school. To address this pressing need, NCSER funded the Center on Secondary Education for Students with Autism Spectrum Disorder (CSESA) in 2012. The focus of this Center is to develop and evaluate the effectiveness of a comprehensive, school-based intervention for secondary students with ASD. The intervention, referred to as the CSESA model, builds on school and student strengths and incorporates evidence-based practices and strategies in order to help students succeed in high school and prepare them for life after high school.

I spoke with Leann Smith, an investigator at the Waisman Center at the University of Wisconsin–Madison, whose research focuses on adolescents and adults with autism spectrum disorder and their families. She is also a researcher on the CSESA project.

What are the key challenges for individuals with autism as they transition into adulthood?

As individuals with ASD transition into adulthood, they face many challenges. Importantly, ASD is a spectrum disorder, meaning that the behavioral profile is highly variable and includes a range of severity across multiple dimensions. Research shows that even though there is some abatement of symptoms as children grow into adults, significant limitations still persist and impact a range of outcomes.

After exiting high school, there is often a significant loss of services for these individuals, including access to insurance. Many families describe the experience of leaving high school as “falling off a cliff.” In the absence of appropriate services and supports, young adults with ASD may struggle in finding employment and maintaining social connections after they leave high school. Research shows that, compared to individuals with other disabilities, individuals with ASD are more likely to be unemployed or underemployed. This is true for those with and without an intellectual disability in addition to ASD. Given the increasing number of individuals with ASD who are moving into adulthood, we know we will need new, research-based interventions to better serve individuals on the spectrum during this transitional period and beyond.

What is your role in the CSESA development and research project? 

Currently we are implementing a randomized control trial of the comprehensive CSESA model in 60 high schools across the country. As an investigator on the project, I am leading CSESA efforts with the 20 Wisconsin schools that are participating in the study. The goal of the CSESA model is to provide high quality professional development and evidence-based interventions to support educators, families, and students during the high school years. Our role has focused on adapting a school-based version of an education and support program for families called Transitioning Together for inclusion as a component of the CSESA model. We originally developed the 8-week Transitioning Together curriculum for implementation in clinical settings but adapted it so it can be used in high school settings.

What can be done to promote successful transition into adulthood?

When you look at early intervention for autism, there are a lot of different models, and we have a pretty good sense of evidence-based practices for young children with autism. There isn’t anything analogous to that for youth and adults. In supporting individuals with ASD, we need services to start as early as possible, and provide more intensive services than what is currently offered in many middle and high schools. Ideally, we would sequence the appropriate support over time and at each developmental phase, starting with early intervention, moving into school, and then meeting the needs of adolescents and adults in school and community settings. However, there is a definite lack of support for individuals with ASD who are facing the challenges of adulthood at this time. The CSESA model provides support that is needed earlier, prior to their transition to promote successful outcomes. For those who are interested in learning more, we currently have multiple resources for professionals and families available on the CSESA website including free professional development curriculum created in collaboration with the Organization for Autism Research as well as guides about evidence-based practices. There is also an “Autism At A Glance” series which highlights strategies for supporting high schools students on a wide range of topics such as functional communication and exercise.   

We are now recruiting participants to test an intervention focused on reducing stress for young adults with autism and their families. The hope is that stress reduction will help the young people take on adult roles. Reducing stress and emotional intensity has a stabilizing effect, which can help people be more empowered and able to maintain a job. Among other things, participants will rehearse problem-solving steps and learn a coping strategy that can help reduce stress: reinterpreting challenges or difficult events as opportunities for growth. Even if you can’t change the stressor, you can change how you think about it.

Interested in learning more about this topic? Leann Smith and other researchers were interviewed in this recent Washington Post article on supporting adults with ASD.

Comments or questions for IES? Please send them to IESResearch@ed.gov.