In November, OAR’s Board of Directors authorized funding for five applied autism research studies in 2022. These new grants, totaling $196,272, bring OAR’s total research funding to more than $4.4 million since 2002. This article is the third of five previews to be featured in The OARacle this year.
Autistic people are significantly more likely to think about, attempt, and die by suicide than the general population. Despite their increased risk, little is known about the factors that predict or protect against suicidal thoughts and behaviors in this population. Understanding suicidal thoughts and behaviors in autism spectrum disorder (ASD) is a research priority for autistic individuals, funders, the Interagency Autism Coordinating Committee (IACC), and top autism scientific journals.
What is known is that autistic adults seeking support for mental health concerns, including suicidal thoughts and behaviors, report feeling excluded from society and the local community. They describe a lack of understanding and support, which leads to feeling “hopeless, isolated, and alone.”
Autistic females are at a particularly high risk of suicide. Yet, because far more males are autistic, little is known about autistic females. Recent research has highlighted some pertinent information about their experience, including missed and later diagnosis, poorer mental health, and vulnerability to physical and sexual assault. They are more likely to die from suicide than both non-autistic females and autistic males.
In this OAR-funded study, Brenna Maddox, Ph.D., and Dara Chan, Sc.D., will examine how social connections and community participation contribute to suicidal thoughts and behaviors in autistic adults to identify tangible risk factors that could be modified within future interventions for suicidal ideation. Using geographic information systems (GIS), global positioning systems (GPS), and social diary methods, which directly map onto daily activities, will enable the researchers to identify tangible targets for social support that can be scaled up within intervention studies for this at-risk population.
Dr. Maddox is an assistant professor in the department of psychiatry at the University of North Carolina – Chapel Hill, and an implementation scientist at the TEACCH Autism Program. Her work focuses on improving community services for autistic people across the lifespan with a particular interest in suicide prevention. Dr. Chan is an associate professor in the Division of Clinical Rehabilitation and Mental Health Counseling at UNC – Chapel Hill. Her research focuses on the community integration and engagement of people with disabilities. She has pioneered the use of GIS/GPS to understand community integration and participation in autistic adults.
They will be assisted by Clare Harrop, Ph.D., an assistant professor in Allied Health Sciences at UNC whose research focuses on the intersectionality between assigned sex, gender, and neurodiversity, and Lisa Morgan, an autistic woman and trauma-informed autism specialist.
The 18-month study, Suicidal Thoughts and Behaviors in Autistic Adults: The Role of Community and Social Connections, has three goals:
Drs. Maddox and Chan anticipate that this project will expand the body of knowledge related to suicide prevention and intervention by improving understanding of suicide risk in autism and informing how future work can utilize community connections as protective factors.
The research team will recruit 50 autistic adults between the ages of 22 and 65 (25 males; 25 females) from the UNC Autism Research Registry. The statewide study will be conducted remotely in order to include participants from both urban and rural areas and increase diversity. The research team will follow best-practice guidelines for risk assessment and suicide prevention using telehealth.
Participants will wear a GPS device to record daily activities and time spent away from home over a seven-day period and complete daily social and travel diaries recording their social and community activities via a secured web survey. Prior to that seven-day, period, they will complete the first of three clinical interviews assessing suicidal thoughts and behaviors. The interviewer will also review how to use the GPS tracker and complete the daily online travel and social diaries. The GPS tracker is smaller than a garage door opener and can be clipped to a belt or keys, or kept in a pocket, backpack, or purse when leaving home.
Daily activity maps, created based on the GPS data, will be shared with participants in Study Interview 2 and used for analysis at the end of the study. A member of the research team will conduct the second clinical interview no more than one week after participants have completed GPS tracking and the diaries. Participants will view their daily maps from the GPS data and discuss their experiences related to community integration, social connections, feelings of belonging, and changes in suicidal thoughts and behaviors over the week. Interviews will be digitally recorded for later analysis.
The third clinical interview, which will take place three months after the first interview, will again assess the participant’s suicidal thoughts and behaviors, allowing researchers to examine suicidal thoughts and behaviors and potential risk or protective factors.
The research team will use information gathered from the clinical interviews, the social and travel diaries, and the GPS data to create a picture of autistic adults’ daily activities. That picture, along with information about participants’ feelings and experiences, will provide insight into what is needed to improve social connections and reduce isolation and suicidal thoughts and behaviors.
This proposal seeks to address an issue of utmost importance: preventing suicide among autistic adults. It addresses OAR’s mission to apply research to the challenges of autism, focusing on outcomes that improve the quality of life for autistic individuals and their families.
Specifically, its findings will enable researchers to characterize risk and protective factors for suicidal thoughts and behaviors, which in turn can inform the design of targeted and tangible personalized interventions.
By providing new insights into how autistic adults spend time during the day, the study will create a picture of autistic adults’ experiences with and perceptions of social and community integration. An in-depth understanding of why certain experiences are positive or negative for autistic adults will inform interventions and other supports that target improved community connections. Additionally, study findings will illuminate needed changes, such as education about autism that is strengths-based and focused on reducing stigma.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
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