Autism in Adults

Summary

Over the last twenty years, research has helped us better understand autism in adults. In a podcast, NIMH Director Dr. Joshua Gordon interviews Dr. Ann Wagner, National Autism Coordinator, and Dr. Lisa Gilotty, chief of NIMH’s Research Program on Autism Spectrum Disorders, to discuss these research advances.

Transcript

Title: Autism in Adults

Description:  Over the last twenty years, research has helped us better understand autism in adults. In a podcast, NIMH Director Dr. Joshua Gordon interviews Dr. Ann Wagner, National Autism Coordinator, and Dr. Lisa Gilotty, chief of NIMH’s Research Program on Autism Spectrum Disorders, to discuss these research advances.

Dr. Joshua Gordon (JG): Hi. I'm Dr. Joshua Gordon, director of the National Institute of Mental Health at the National Institutes of Health. The NIMH is the lead federal agency for research on mental disorders. In this podcast, we recognize research advancements in the study of autism spectrum disorder. In particular, we're going to talk about how research has helped us better understand autism in adults. Listen in to find out more.

Hello and welcome. Today, we're discussing how research has helped advance our understanding of autism spectrum disorder, more specifically, our understanding of autism in adulthood. I'm joined by Dr. Ann Wagner, the national autism coordinator and chief of the NIMH biomarker and intervention development branch. Dr. Wagner plays a vital role in ensuring the implementation of autism spectrum disorder-focused research, services, and support activities across federal agencies.

Dr. Ann Wagner (AW): Hello. It's great to be here.

JG: Also joining me is Dr. Lisa Gilotty, who is the chief of the NIMH research program on autism spectrum disorders. Through this program, NIMH funds a wide range of research on the characterization, treatment, and outcomes of individuals with autism spectrum disorder. Dr. Gilotty oversees the funding of autism-related research that is conducted in universities and institutions around the country, including those that focus on understanding the brain mechanisms underlying the development of autism, the developmental course of autism across the life span, and lots of other areas of research.

Dr. Lisa Gilotty (LG): Hi. Thanks so much for having us.

JG: Before we get started in talking about the advances in our understanding of autism in adults, we need to look at where we've come from. Ann, what did we know about autism in adults 20 years ago?

AW: I think the answer to that question is, not as much as you would expect. 20 years ago, most people were focused on how to best identify kids with autism and how to get them the treatment and services they needed. It was far less common for researchers to be looking into autism in older adolescents and adults.

JG: Lisa?

LG: Yes, I definitely agree with that. There weren't many practitioners who focused on autism in adolescents and adults. And while some researchers were looking at individual cases of autism in adulthood, there was no coordinated research effort and no big focus on autism in this age group.

JG: So, 20 years ago, researchers in the field were focused on identifying kids with autism, not as much a focus on autism in adulthood. Given that, how do we think about autism in adulthood today? What things are researchers looking at in this age group?

AW: Before answering that question, I think it's important to recognize what motivated the research community to focus on autism in adults. At least two groups that I can think of, helped highlight the need for research on autism in adulthood. The first group was made up of parents whose kids were transitioning into adulthood. These parents were surprised that there hadn't been much research on autism in this age group. So parents and parent-led organizations raised their concerns with researchers and with research funding agencies, and strongly advocated for more research.

LG: Another group who motivated the shift in research was adults with autism, who became their own self-advocates. They pushed for more work to be done regarding the services and supports that might be needed during the transition from adolescence to adulthood. They also lobbied for improved ways to accurately identify autism in adults, including additional training for doctors.

AW: The resulting research shed light on some of the challenges, needs, and strengths that are unique to the adult autism community. For example, we know that adults with autism often face challenges with educational achievement, independent living, health care, and utilization of health care services, and that these challenges are different than those experienced by the general population, even those with other developmental disabilities. We also now recognize that many autistic adults deal with additional physical and mental health problems. Unfortunately, while faced with these challenges, people with autism often face a lack of supports and services when they transition into adulthood. So research has given us information about the unique needs of this community, and now we're trying to make progress on how to best meet these needs.

LG: It's important to remember though, that while autistic adults face some challenges, they also have many skills and strengths, and are making valuable contributions to their communities. This is now being more widely recognized. For example, corporate organizations have created targeted employment programs for adults with autism. And some companies also sponsor career fairs or job fairs that specifically reach out to autistic adults. These are just some of the ways that we recognize the strengths and contributions of the adult autism community.

JG: I think that's so important that the push for more research on autism in adults came from those who were most affected: children transitioning into adulthood, their parents and caregivers. Research on the needs of those transitioning to adulthood, and adults with ASD is really crucial if we're to learn how to support them and meet their needs. NIMH and our partner institutes at NIH are committed to ensuring progress towards both short-term and long-term goals focused on addressing these needs and improving the lives of those living with ASD. That being said, it's important to think about, what are the areas of need in this research. Ann, what are researchers doing now to try to fill research gaps?

AW: There's still a lot to learn about autism in adulthood. For example, while we are gaining a better understanding of the health, educational, and employment challenges associated with autism, more research is needed about the social relationships of adults with autism. Another important area of ongoing work focuses on learning more about whether adults with autism experience unique challenges in their physical and mental health later in life. That type of knowledge could help us support healthy aging and brain health in this population.

LG: Currently we're building on the results of the last 20 years of research by testing ways to help with previously identified challenges and areas of concern. For example, NIMH is supporting research on training for autistic adults on how to get and keep a job, training for how to interact with law enforcement, developing a validated measure of depression for autistic adults, and learning how to best address the health concerns of adults with autism.

AW: While NIH does not fund the actual provision of services, NIMH does support research into the best ways to disseminate and implement services. In fact, we want to encourage more researchers to focus on services research. To that end, for example, we have special announcements for career development awards that will help attract and facilitate researchers moving into the field of autism services research.

LG: The end goal of all of this work is to help identify challenges faced by adults with autism and provide them with greater access to the resources and programs they need throughout their lives, so they can live the type of life they want to lead.

JG: These and other efforts underscore NIMH's commitment to increase our understanding of autism spectrum disorder with a focus on using that understanding to improve the lives of all those affected by autism. That's all the time we have for today. Thank you to Dr. Wagner and Dr. Gilotty for joining me today, and thank you to our listeners for tuning in. If you're looking for information on autism research from NIMH, visit our website at www.nimh.nih.gov/autism. You'll also find a transcript of today's podcast on the website. This is Dr. Joshua Gordon with the National Institute of Mental Health.