Key takeaways from Dr. Schwartzman’s presentation:
- Autistic people are frequently excluded from mental health research due to various factors.
- Including autistic individuals and scientists in the design of autism-focused research studies is crucial to effective research.
- Dr. Schwartzman’s lab is investigating tools to assess depression and suicide risk in autistic youth, testing autism-adapted cognitive behavioral therapy, and studying the needs of autistic youth and families following a suicide attempt.
Jessica M. Schwartzman, PhD, Clinical Psychologist in Developmental-Behavioral Pediatrics and Director of CHLA’s Training and Research to Empower NeuroDiversity (TREND) Laboratory, was invited by the National Institute of Mental Health (NIMH) to co-host a session in its webinar series exploring issues of disability, patient equity and mental health.
The Oct. 10 webinar, which Dr. Schwartzman co-hosted with Kristen Berg, PhD, from the University of Illinois Chicago, was titled “Improving Mental Health Equity for Individuals with Neurodevelopmental Conditions: An Examination of Risk and Protective Factors and Potential Interventions.”
During the session, Dr. Berg discussed eliminating ableism in health care systems. Dr. Schwartzman focused on her work addressing the exclusion of autistic individuals from mental health research.
An ongoing crisis
“It’s probably not a surprise to anybody that there’s an ongoing mental health crisis in the U.S.,” Dr. Schwartzman said. “Suicide has become the second leading cause of death for young people in this country. Unfortunately, people with disabilities are overlooked and severely understudied.”
While disability is a broad category, Dr. Schwartzman focuses on autism. Autism is described as a neurodevelopmental condition characterized by unique social communication and interaction preferences, but the presentation of autistic traits differs significantly between people. In the U.S., 1 in 34 youth are diagnosed each year with autism.
“As we have a large population of autistic people in the country and a large population of people in mental health distress, it begs the question: ‘What do we know about depression and suicide risk in autistic people?’” Dr. Schwartzman said. The answers are frustratingly scarce. As Dr. Schwartzman explained, autistic people have been systematically excluded from mainstream research due to limited data on specific depression and suicide risk as well as potential protective factors among autistic people, a lack of evidence-based treatments for this population, and a dearth of opportunities for provider training and education on autistic patients. This has resulted in significant health disparities.
Inclusion is key
Dr. Schwartzman explained the importance of including autistic young people in the design of research studies focused on autism. As one autistic teenager Dr. Schwartzman worked with said, “Nobody asks what it’s like for me…how can you study something in autism without asking us…isn’t that just…well…dumb?” For Dr. Schwartzman, this quote highlighted an important reality. “We can’t make meaningful research and clinical advancements for a community without actively and consistently partnering with that community,” she explained.
Dr. Schwartzman recognized that most existing research on depression and suicide risk in autism is limited to reporting from patients’ parents. Furthermore, autistic people not being involved in designing measures of their own experiences has led to unhelpful tools. For instance, questionnaires may ask if a patient is “feeling blue,” but an autistic person could point out that a person cannot literally “feel” a color, so the question is meaningless.
Dr. Schwartzman’s lab collaborates with autistic lived experience experts, community advocates, and scientists to study and develop intervention strategies through an approach called community-based participatory research.
Collaborating with the autistic community
One of Dr. Schwartzman’s studies, funded by the NIMH, is a 5-year exploration of risk and protective factors to depression in autistic adolescents. It utilizes various measurement tools, including clinical interviews, questionnaires, and electroencephalogram (EEG) and event-related potential (ERP) measurements of the brain. The goals are to assess the reliability of these measurement tools, understand how the risk and protective factors are associated with depression and suicide risk, and identify which intervention strategies could be effective in clinical practice.
Dr. Schwartzman has also conducted a pilot study to test a version of cognitive behavioral therapy adapted for autistic youth dealing with depression. By the end, 80% of participants were either satisfied or very satisfied with their experience, and emotional reactivity and negative self-esteem both decreased for those involved.
A third study that Dr. Schwartzman is launching with a collaborator at the University of Calgary focuses on supporting autistic youth and families after a suicide attempt.
Dr. Schwartzman closed her presentation by encouraging her colleagues to include and partner with autistic people in research and to utilize resources developed for and with autistic people. “I hope what’s clear from my work is that my autistic collaborators are some of the very brightest and most driven scientists I’ve ever worked with,” she said. “They will elevate your science in many ways and are eager to partner and participate in this work.”
