Research Along the Autism Spectrum: Diverse Research to Meet Diverse Needs
People with autism experience a spectrum of strengths and challenges across the full lifespan. These facts are compellingly clear to me from serving as chair of the Interagency Autism Coordinating Committee (IACC) since my arrival at NIMH in 2016. The IACC is charged with advising the Secretary of the U.S. Department of Health and Human Services on policies, practices, and research priorities with regard to autism. IACC members include federal officials, academic researchers, autistic self-advocates, family members of people with autism, and others who are committed to improving the quality of life for people on the autism spectrum and their families.
The current committee is the most diverse one to date, with broad representation across race and ethnicity, ability, gender and gender identity, sexual orientation, geography, age, and educational and professional backgrounds. For the first time, the committee also includes autistic adults who use alternative and augmentative communication modalities (AAC). This diversity ensures consideration of a range of experiences and perspectives across the autism spectrum and full lifespan.
Through the IACC, I have heard input shared by autistic professionals in fields such as law and academic research who have described the challenges they have faced working their way upward in education and workplace settings that present barriers for people with disabilities. The committee has also heard from parents who are concerned about what the future looks like for their children and adolescents with autism who have intensive support needs and require 24-hour care. Regardless of the different challenges they may have faced, individuals with autism and their families communicate clearly and with one voice when noting the pressing need for more and better interventions; for greater access to high quality education, housing, employment, and services for adults; and for a deeper understanding of the strengths and challenges they have experienced over the course of their lives.
Recommendations developed by the IACC, informed by this input, have led to enhanced efforts to diversify the autism research portfolio at NIMH. If we are to help all individuals with autism, we need research that considers the full spectrum of needs, across the full lifespan.
Supporting Children with Autism
Research into the early part of the lifespan includes efforts to develop tools that can help identify autism in infants and toddlers as early as possible, since we know that early identification and intervention can lead to better outcomes. It continues with efforts to improve the efficacy and availability of interventions. Importantly, intervention research in children aims to address the issues that individuals on the autism spectrum and their families care deeply about, such as maximizing educational and social opportunities. Two recent NIMH-funded research projects—focused on children with differing levels of service needs—exemplify these principles.
In the first NIMH-funded project , scientists Karen Bearss, Ph.D., of Seattle Children’s Hospital, and Jill Locke, Ph.D., of the University of Washington, aim to understand how to help paraprofessionals and other school-based care providers who work with children with autism who have high service needs in mainstream early elementary school settings. They previously developed an improved, child-focused method for understanding and addressing behaviors that may prevent these children from fully engaging in academic tasks. This current research project seeks to determine the best way to train school-based providers in this method and measure its efficacy and practicality in real-world educational settings.
The second example project focuses on children in elementary school, middle school, and early high school. Led by Blythe Corbett, Ph.D., at Vanderbilt University Medical Center, and involving collaborations with Virginia Tech and Stony Brook University, the researchers are testing the efficacy of a theater-based program at enhancing social abilities and peer interactions in youth with autism.
Supporting Transition-Age Youth
For adolescents and young adults with autism, areas of need include developing and testing services that assist in the transition to adulthood. Solutions to help transition-age youth must also account for the diversity of needs along the spectrum.
Navigating the transition to college can be challenging for adolescents and young adults with autism. In a recently completed 3-year study led by Susan White, Ph.D., of Virginia Tech, researchers designed and studied the Stepped Transition in Education Program for Students with ASD (STEPS), a multipronged approach to prepare students with autism for the transition to post-secondary education. The study demonstrated that STEPS helped to increase participants’ college readiness and decrease depressive symptoms over the transition period.
Transition-age youth with autism may also be concerned about challenges in accessing the services they need. For these youth, having informed caregivers can be of tremendous help. A group of researchers led by Julie Taylor, Ph.D., of Vanderbilt University Medical Center, is using NIMH funding to develop and test a parent/caregiver advocacy training program aimed at enabling caregivers’ efforts to advocate for continued services for their children as they transition into adulthood.
Supporting Adults with Autism
The continuum of service needs carries through to adulthood. Some autistic adults may benefit from supported housing and assistance meeting their daily needs; others who live independently may benefit from educational supports and help with daily living skills. Accordingly, the NIMH research portfolio supports a number of research projects targeted at different levels of need.
Two recent NIMH-funded projects focused on helping adults with autism build social skills. Edward Brodkin, M.D., of the University of Pennsylvania, and colleagues assessed a variety of social abilities in a group of adults with autism. Their findings indicated that some abilities were highly correlated with each other, while other abilities—including those from the same category—were independent. Knowledge gained from this project will help the researchers design interventions that are tailored to individual needs.
In a different project, Leann DaWalt, Ph.D., of the University of Wisconsin–Madison, developed a multi-component intervention aimed at increasing social engagement at work and school among young adults with autism, increasing family capacity for accessing services, and improving adult outcomes. The outcomes of this intervention included improvements in participants’ daily living skills and social outcomes in real-world settings.
Research also shows us that preventing suicide in the autism community is a critical need that will require tailored approaches. To help design such approaches, Shari Jager-Hyman, Ph.D., of the University of Pennsylvania, and Brenna Maddox, Ph.D., of the University of North Carolina School of Medicine, are teaming up to study people on the autism spectrum who come to emergency rooms with suicidal thoughts or behaviors. The researchers are looking for patterns in outcomes and trying to identify potential intervention targets.
Together, these and many other NIMH-supported projects focus on individuals with autism, of different ages and with different needs, exemplifying the diversity of the NIMH autism research portfolio. As we observe Autism Awareness Month, it is important to remember that the spectrum of needs of individuals with autism requires a spectrum of corresponding research to address them.