Inside IES Research

The prevalence of children identified as having autism spectrum disorder (ASD) has increased steadily in the last 20 years. Early identification and intervention is important, a point that is underscored by the CDC’s campaign Learn the Signs. Act Early. To recognize April’s Autism Awareness Month, NCSER is highlighting two projects supporting the capacity of parents and educators to intervene in children’s early development.

Assisting Early Interventionists in Facilitating Parent Mediation of Learning

Researchers Hannah Schertz (left, Indiana University) and Kathleen Baggett (right, Georgia State University) have developed a framework to improve the social communication skills of toddlers showing signs of ASD with a system that guides early interventionists (EIs) to support parents. The program, Supporting Early Interventionists of Toddlers with Autism to Build Family Capacity (SEITA), aims to help EIs to work with parents as they integrate interventions into natural interactions with their children. EIs learn to guide parents in understanding when their child is engaging in social communication and in implementing learning strategies to enhance these competencies during parent-child interactions. More specifically, EIs guide parents in applying four mediated strategies to promote engagement in learning: focusing, giving meaning, encouraging, and expanding. For example, one strategy they use is to facilitate guided reflection on a just-recorded video of parent-child interactions.

As the researchers test the promise of the intervention, they report that EIs have conducted the intervention with fidelity in both home-based and telehealth contexts. They have found that parents in the study demonstrated clear improvements in their use of at least two mediated learning strategies and have been able to implement intervention practices with fidelity when working with their children. The researchers also track the children’s progress on social reciprocity, joint attention, positive social behavior, and social play, and results will be analyzed when data collection is complete.

Investigating the Long-Term Benefits of an Elementary Intervention

The IAR team (from left to right): James P. Donnelly, Marcus L. Thomeer, Christopher Lopata, and Jonathan D. Rodgers

As children age into elementary grades, their primary site of intervention becomes the school. In 2008, NCSER funded the development of the comprehensive school-based intervention (CSBI) to support the social competencies of children with high functioning autism spectrum disorder (HFASD). This multi-prong approach includes interactive computer instruction to teach children to recognize emotions, social skills groups, therapeutic peer group activities to practice social skills, daily behavioral notes, and monthly parent training. A 2013 NCSER-funded randomized controlled trial of CSBI found that students with HFASD who participated in CSBI improved significantly in measures of social cognition, social-communication skills, and ASD symptoms compared to students with HFASD who received typical instruction.

To assess the intervention’s ability to impact long-term student development, Christopher Lopata and his colleagues James Donnelly, Marcus Thomeer, and Jonathan Rodgers (Canisius College) are following up on the initial efficacy trial to study the middle and high school students who participated in CSBI in elementary school. They are measuring student social cognition, social communication skills, ASD symptoms, and academic achievement at the beginning and end of two consecutive school years to examine lasting impacts of the CSBI program. Although data are still being analyzed from this project, it is notable that because data collection occurred as the COVID-19 pandemic caused school shutdowns, the PIs were able to examine the potential effects of stay-at-home restrictions on these students. There have been widespread concerns that disruptions to routines, curtailed social opportunities, and removal of support services associated with shutdowns could have deleterious effects on children with ASD. However, Lopata and colleagues found no significant differences between data collected before stay-at-home restrictions and data collected 4 months after the restrictions on ASD symptoms, adaptive behaviors, or social communication.

NCSER will continue to share the final results of these studies, as well as additional research focused on supporting children with ASD, in the future.

Written by Julianne Kasper, Virtual Student Federal Service Intern at IES and graduate student in Education Policy & Leadership at American University, and by Emily Weaver (Emily.Weaver@ed.gov), NCSER program officer who oversees ASD grants.

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.

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