Autism Speaks hosts the Thought Leadership Summit on Autism and Aging

July 26, 2022

In June, Autism Speaks hosted a virtual Summit bringing together families, self-advocates, researchers and policymakers to discuss the issues facing autistic adults as they age. Over two days of sessions, presenters shared the top challenges faced by aging autistic adults, discussed policy considerations, provided an overview of the existing research and identified opportunities for further action to support this community. 

Watch some of the key sessions from Day 1 and Day 2 of the Summit below, or view the full playlist on the Autism Speaks Youtube channel.

Day 1

Living with Autism as an Adult: Personal Narratives from Self-Advocates

  • Moderator: Vanessa Bal, M.Sc., Rutgers University
  • Panel: Jairo Arana, Anne Grego-Nagel, Elisheva Levin, JoAnne Lovegrove, Karl Wittig

Five autistic adults share their reflections on late diagnosis, the benefits and challenges of aging, their struggles navigating the education and healthcare system, and the importance of finding supports and learning opportunities throughout the life span.

Congressional Support for Aging Adults in the Autism Community

  • Speaker: Representative Chris Smith, U.S. Congressman for New Jersey’s 4th District

U.S. Rep. Chris Smith discusses his priorities to meet the growing needs of aging autistic individuals so that they can live fuller and healthier lives.

Autism in Older Age: Research, Clinical and Training Issues

  • Speaker: Joseph Piven, M.D., University of North Carolina

Dr. Piven speaks about the issues that impact research, clinical care and training for researchers studying autistic adults. He discusses the methodological challenges of studying aging in this population and shares the findings of several studies that examine autism and its co-occurring conditions in middle and older age.

Service and System Fault Lines – Opportunities for Community-Engaged Research in Public Health and Policymaking

  • Speaker: Teal Benevides, Ph.D., M.S., OTR/L, Augusta University
  • Speaker: Stephen Shore, Ed.D., Adelphi University

Dr. Benevides and Dr. Shore share the key priorities of autistic adults, particularly in the spheres of mental health, access to healthcare, and gender inequalities in diagnosis and care. They also examine how current systems fail to meet the needs of autistic adults and explore how society can better support autistic well-being.

Autism and Life-Long Impact on Families

  • Speaker: Tamar Heller, Ph.D., University of Illinois at Chicago

Dr. Heller discusses the life-long impact of caring for a family member with autism and shares the unmet needs of families and caregivers as their loved ones age. She also explores how to better support these families through public policy, social interventions and natural community supports.

International Reflections on the Autism and Aging Summit

  • Speaker: Petrus de Vries, MBChB, FRCPsych, Ph.D., University of Cape Town

Dr. de Vries shares his reflections on Day 1 of the Summit and offers an overview of five critical points that have implications for research and policymaking in the field of autism and aging.

Day 2

Living with Autism as an Adult: Personal Narratives from Parents and Caregivers

  • Moderator: Alycia Halladay, Ph.D., Autism Science Foundation
  • Panel: Jennifer Brown, Geraldine Turner Bright, Maddy Dever, Karen Kelsey, Jeff Rickel

Five parents of autistic adults talk about how their children’s needs have changed with age, the challenges they have encountered navigating adulthood, and issues that should be prioritized in future research to better support the autism community.  

Aging with Autism: Biological, Behavioral and Intervention Considerations 

  • Speaker: B. Blair Braden, Ph.D., Arizona State University

Dr. Braden shares research from her lab examining the cognitive and brain aging trajectories in people with autism. She then discusses how to take those learnings and apply them to precision care in order to predict future outlooks and guide better interventions.

Lessons from Cohorts of Autistic Adults

  • Speaker: Catherine Lord, Ph.D., UCLA

Dr. Lord discusses the results of her lab’s 30-year study of 253 autistic adults and shares how outcomes and life achievements differ for autistic people with and without intellectual disabilities. She then compares these outcomes to her cohort’s feelings of well-being and happiness, and proposes ways that developmental trajectories may affect quality of life.

Autism and Aging: Findings From a Two-Decade Cohort Study

  • Speaker: Marsha Mailick, Ph.D., University of Wisconsin-Madison

Dr. Mailick shares the results of her lab’s 20+ year study of 406 autistic adolescents and adults, looking at the ways that health, daily living skills and social reciprocity change throughout the life span. She also identified the risk factors that predicted mortality among members of the cohort who passed away during the study and discussed how future research could lead to better outcomes. 

Leveraging mHealth to Improve Physical Activity and Health in Adults with Autism Spectrum Disorder

  • Speaker: Daehyoung “DH” Lee, Ph.D., University of Minnesota Duluth

Dr. Lee speaks about physical and mental health in adults on the spectrum and the benefits of physical activity on health outcomes. He then discusses the potential of mobile health (mHealth), particularly a gamified fitness app, as an effective tool to improve health in this population.

How to Approach Therapeutics if We’re Going to Support Autistic Adults and Their Quality of Life? 

  • Speaker: Ashok Srinivasan, M.D., Autism Impact Fund

Dr. Srinivasan discusses the importance of using biological data to complement other interventions for autism, particularly in the treatment of co-occurring conditions. He also discusses new methods of using technology to share real-time data about biological and environmental factors that can inform interventions.

Foundations Playing Critical Roles in Supporting Autism and Aging

  • Speaker: Dean Hartley, Ph.D., Autism Speaks
  • Speaker: Alycia Halladay, Ph.D., Autism Science Foundation
  • Speaker: Orly Fruchter, MBA, Azrieli Foundation

Dr. Hartley, Dr. Halladay and Ms. Fruchter explore the ways that foundations can collaborate to support autistic adults in ways that meet the diverse needs of the community.