Suicide Prevention Study in Adolescents and Young Adults with Autism – Jagwire
Many Americans don’t realize the large number of adults with autism across the country who routinely struggle with suicidal thoughts and self-injurious behaviors.
Compared with the general population, people with autism are up to nine times more likely to think about suicide, up to five times more likely to attempt suicide and more than seven times more likely to die by suicide, according to Dr. Teal Benevides, an associate. Professor in the Department of Occupational Therapy, College of Allied Health Sciences, University of Augusta.
“There are a shocking number of individuals on the spectrum who are at risk for suicide, suicidal ideation and self-harm,” Benevides said. “Numerous publications suggest that many adults on the spectrum suffer from anxiety and depression, and therefore these co-occurring mental health problems are very common and may contribute to the risk of suicidal thoughts. “
As children with autism reach adulthood, Benevides said many young adults on the spectrum face various risk factors for suicide.
“One of the things people don’t recognize is that people on the spectrum want and desire to be a part of society,” she said. “They want to have friendships. They want to have relationships. They want to have a job. They want to be able to do things that we all enjoy. However, these things are sometimes more difficult to do, given the characteristics of autism.
These barriers can sometimes contribute to depression and suicidal thoughts and behaviors, Benevides said. “The experience of feeling excluded throughout life, and perhaps being bullied and marginalized, contributes to some pretty significant mental health issues,” she said. “As a result, the risk of suicide is higher, as well as suicidal ideation and suicide attempts are also higher. But it doesn’t have to be like that.
Suicide prevention strategies
Benevides, along with Dr Stephen Shore, autism educator and clinical assistant professor at Adelphi University, co-leads the Autistic Adults and other Stakeholders Engage Together (AASET) team. Benevides and Shore are co-investigators of a national study funded by a Patient-Centered Outcomes Research Institute (PCORI) $ 9 million grant that will compare the effectiveness of two suicide prevention interventions in people with autism.
Dr. Brenna Maddox, assistant professor at the University of North Carolina in the Department of Psychiatry at Chapel Hill, is the principal investigator of the national study that will involve four health systems in the United States.
The study will be co-led by Dr. Shari Jager-Hyman, assistant professor of psychiatry at the Perelman School of Medicine at the University of Pennsylvania. The University of North Carolina’s TEACCH Autism Program and the Carolina Institute for Developmental Disabilities, as well as the Children’s Hospital of Philadelphia, the Kennedy Krieger Institute in Baltimore, and the Nationwide Children’s Hospital in Columbus, Ohio, will enroll a total of 1,500 people with autism between the ages of 15 and 24 who test positive for suicidal ideation.
From there, the study will compare the effectiveness of two evidence-based suicide prevention strategies adapted for people with autism by Maddox, Jager-Hyman and their team. The two evidence-based suicide prevention strategies are called “Safety Planning Intervention-Autism Spectrum Disorder” (SPI-ASD) and “SPI-ASD plus Structured Follow-up Care” (SPI-ASD +).
“SPI-ASD is a brief intervention that results in a personalized plan designed to reduce the risk of short-term suicide in young people with autism,” Maddox said in a recent press release from the University’s medical school. from North Carolina. “In a single session, a clinician works with the person with autism 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 emergency services available. Part of security planning is also discussing how to increase security by reducing access to lethal means. “
Clinicians delivering SPI-ASD + will implement SPI-ASD, followed by at least two brief contacts by phone or text message, depending on the preferences of the person with autism.
According to the press release, the structured follow-up communication includes a brief risk assessment and a mood assessment; a review and, if necessary, a revision of the SPI-ASD; and support related to the initiation of outpatient mental health treatment.
The research team will follow several outcomes of interest during one, six and 12 month evaluations with participants with autism.
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 means fatalities, use of the safety plan and use of acute care services for suicidality, according to Maddox.
“An important strength of this study is the genuine involvement of people with autism and other key stakeholders throughout the research process,” Maddox said. “Dr. Jager-Hyman and I had the incredible opportunity to partner with AASET to develop the study proposal, and stakeholder engagement will be a critical element in all phases of the study.
Ensuring that people with autism were involved in developing the study proposal was crucial because people with autism have historically been excluded from the research process, Benevides explained.
“The lack of involvement of people with autism in research on people with autism is a moral issue,” Benevides said. “If you are planning to develop an intervention for a particular community, it is essential that it gets involved and contributes to this process.
It is important that this valuable research is led by the community it is meant to serve, said Benevides.
“From an ethical standpoint, we need to make sure that ongoing autism research reflects the priorities of people with autism,” Benevides said. “In partnership with my colleague Stephen Shore, who is an adult with autism, we embarked on a journey to truly develop a team of people with autism, as well as caregivers of people with autism, to educate research teams on the priorities of autism. autism research and health care. “
A collaborative study
The project and the research have been successful because it is a collaborative effort, Shore said.
“We will build on the work we have initiated with AASET and this will have a direct impact on how people with autism will be involved in this research,” Shore said in the press release.
AASET will work with Maddox, Jager-Hyman and the entire research team to ensure that people with autism are meaningfully engaged throughout the study. Roles include co-development and co-delivery of clinician training, assisting in data collection and analysis, serving on an advisory board, and disseminating results.
People with autism, family members, clinicians, public health leaders, and representatives from medicare, autism advocacy and suicide prevention organizations will also be participating. part of a multi-stakeholder advisory board to discuss study progress and plan for dissemination early on.
Researchers plan to start enrolling participants with autism by the end of 2022, Benevides said.
“What I like about this project is that Dr Maddox and Dr Jager-Hyman were interested in developing this collaborative study. AASET was funded by PCORI in 2017, ”she said. “This two-year project has identified research priorities for the autism community. Our team kept meeting and asking, “Now that we have these research priorities, what else can we do? “
Benevides said the group has shared their work with autism researchers who also have training and education as intervention researchers to spur research on the priorities.
This five-year national study could have a dramatic impact on adults and adolescents with autism across the country who routinely struggle with suicidal thoughts, Benevides said.
“We need to think about how we as a society can design autism differently to reduce stigma, but we also need evidence-based strategies to prevent suicides,” Benevides said. “Our immediate goal with this study is to prevent these suicide attempts.”