Brenna Maddox , PhD, assistant professor in the UNC Department of Psychiatry and an implementation scientist for the UNC TEACCH Autism Program, is co-leading a national study funded by a $9-million award from the Patient-Centered Outcomes Research Institute (PCORI) that will compare the effectiveness of two suicide prevention interventions for autistic individuals. The study will involve four health systems across the U.S. and will be co-led by Shari Jager-Hyman, PhD, assistant professor of Psychiatry, Perelman School of Medicine at the University of Pennsylvania.
There is little known about how to best help autistic youth at risk for suicide, but there is a great need for effective interventions. Compared to the general population, autistic people are up to nine times more likely to think about suicide, up to five times more likely to attempt suicide, and over seven times more likely to die by suicide.
“At TEACCH we’ve seen a high rate of suicidality in adolescents and young adults with autism,” said Laura Klinger, PhD, executive director of the UNC TEACCH Autism Program and associate professor in the UNC Department of Psychiatry. “This PCORI-funded study is well-aligned with TEACCH’s mission to create and disseminate community-based services, training programs, and research to enhance the quality of life for individuals with autism and their families across the lifespan.”
UNC TEACCH and the Carolina Institute for Developmental Disabilities (CIDD), along with Children’s Hospital of Philadelphia, the Kennedy Krieger Institute in Baltimore, MD, and Nationwide Children’s Hospital in Columbus, OH, will enroll a total of 1,500 autistic individuals between the ages of 15-24 who screen positive for suicidal ideation. From there, the study will compare the effectiveness of two evidence-based suicide prevention strategies adapted for autistic individuals by Maddox, Jager-Hyman and their team with support from the FAR Fund: the Safety Planning Intervention-Autism Spectrum Disorder (SPI-ASD), and SPI-ASD plus structured follow-up care (SPI-ASD+). Clinicians will be randomly assigned to implement either the SPI-ASD or SPI-ASD+.
“SPI-ASD is a brief intervention that results in an individually tailored plan designed to lower the short-term risk of suicide in autistic youth,” Maddox said. “During a single session, a clinician works collaboratively with the autistic individual to develop a list of warning signs that signal the need to use the safety plan; sources of distraction, comfort, and support; reasons for living; and available emergency services. Part of safety planning is also discussing how to increase safety by reducing access to lethal means.”
Clinicians who deliver SPI-ASD+ will implement SPI-ASD, followed by at least two brief contacts either by phone or text, based on the autistic person’s preference. The structured follow-up communication includes (1) a brief risk assessment and mood check; (2) review, and if needed, revision of SPI-ASD; and (3) support related to outpatient mental health treatment initiation.
The research team will track multiple outcomes of interest across one, six and 12-month assessments with autistic participants. Participants will be asked about suicidal thoughts and behaviors, engagement in mental health care, quality of life, social well-being, skills to manage suicidal thoughts and behaviors, access to lethal means, safety plan use, and the use of acute care services for suicidality.
“A significant strength of this study is the authentic involvement of autistic individuals and other key stakeholders throughout the research process,” Maddox said. “Dr. Jager-Hyman and I had the amazing opportunity to partner with Autistic Adults and other Stakeholders Engage Together (AASET) to develop the study proposal, and stakeholder engagement will be a core component across all phases of the study.”
“We’re going to build on the work we initiated with AASET and that will directly impact how autistic people will be involved in this research,” said Stephen Shore, EdD, clinical assistant professor at Adelphi University, and a project co-lead for AASET.
“Autistic people have historically been disenfranchised from the research process,” said Teal Benevides, PhD, associate professor in the department of Occupational Therapy at Augusta University, and a project co-lead for AASET. “The lack of involvement of autistic people in research about autistic people is a moral issue. If you’re going to develop an intervention for a particular community, it’s essential that they are involved and contribute to that process.”
AASET will be collaborating with Maddox and the entire research team to make sure autistic people are meaningfully engaged throughout the study. Roles include co-developing and co-delivering the clinician trainings, assisting with data collection and analyses, serving on an advisory council, and disseminating findings. Autistic individuals, family members, clinicians, public health leaders, and representatives from healthcare insurance organizations, autism advocacy organizations, and suicide prevention organizations will also serve on a multi-stakeholder advisory board to discuss study progress and plan for dissemination from the beginning.
The study team expects that findings will improve the quality of care that suicidal autistic youth receive, decrease their risk of related injuries, and prevent devastating and premature deaths. Results will be shared widely to ensure that more autistic youth experiencing suicidal thoughts and behaviors have access to treatments that work.
PCORI’s Board has approved this funding award pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract. PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.
Researchers plan to begin enrolling autistic participants by late 2022.