OARacle Newsletter

In October 2024, OAR’s Board of Directors authorized funding for six applied autism research grants and one autism resource grant. These new research grants, totaling $338,844, bring OAR’s total research funding to $5.3 million since 2002. This article is the fifth of the previews to be featured in The OARacle this year.

In a 2014 study of newly diagnosed autistic adults, approximately 66% reported that they had contemplated suicide, which contrasts with 17% of the general population. Primary predictors of suicidal behavior in autistic people include depression and anxiety. Lack of access to social support is another risk factor. Autistic people report difficulties accessing mental health services, and receiving assessments and interventions that are inappropriate for their needs. 

Prevention interventions to help autistic people before they are actively suicidal is key. Despite research that indicates that addressing suicidal thought matters to them, there is relatively little research directed at suicide prevention for autistic people. Recent research suggests self-compassion is a key protective factor for autistic suicidal behavior. 

In her two-year, OAR-funded study, Efficacy of a Depression and Suicidal Ideation Prevention Class for Autistic Adults (PAUSE), Emily Rothman, Sc.D., and her research team will offer a suicide prevention program, PAUSE, that uses evidence-based techniques, including increasing knowledge about depression, encouraging help-seeking, increasing self-compassion, and reducing stigma related to mental health.  

The study goals are to:  

• Finalize the program content in collaboration with seven AASPIRE Suicide Prevention Project autistic advisors. 

• Pilot test the curriculum using a one-group pre/post design with a mixed methods evaluation and derive estimates of quantitative outcomes.  

The study hypotheses are that the participants will report: 

• Higher levels of self-compassion on the post-test as compared to pre-test 

• Lower levels of depression symptoms on the post-test as compared to the pre-test 

• Being highly satisfied with PAUSE 

Dr. Rothman is a professor and chair of occupational therapy at Boston University, with a secondary appointment in the Department of Community Health Science at the Boston University School of Public Health. She is the parent of an autistic teenager. Since 2004, she has been the principal investigator for research grants totaling more than $7.3 million from the National Institutes of Health, the National Institute of Justice, OAR, and others.  

Methodology

The research team will recruit 21 participants age 18 and older through the Association for Autism and Neurodiversity (AANE) membership pool, which includes more than 16,000 autistic adults. The study is open to self-diagnosed and professionally diagnosed autistic people. Participants must have experienced feelings of depression and/or anxiety in their lifetime; be able to communicate in English; have access to a computer; and be able to use Zoom to join the classes. There are no exclusions related to IQ or whether someone is verbal or non-verbal. 

People can’t participate if they have lasting intense thoughts of ending their lives or have experienced intense thoughts about ending their lives once a month or more frequently in the past year, or that when they experience intense thoughts about ending their lives they feel “rather likely” or “very likely” to act on them.  

The research team will meet with each participant prior to the program start to find out what accommodations they need and their ability level in order to tailor program information to meet their needs. For example, if someone has a challenge reading and understanding information from a PowerPoint slide, the research team will send it to them ahead of time so they can review it on their own and with a caregiver.  

A review team that includes autistic people will finalize program content. In addition, an autistic facilitator and a non-autistic psychologist will co-facilitate program sessions. Autistic participants in Dr. Rothman’s prior intervention studies have reported that it is deeply meaningful to see autistic people in leadership roles. 

Each of the six online sessions will provide a mixture of didactic and participatory education. 

Week 1: Introduction 

• PAUSE rules, safety information 

• Definitions of depression, anxiety and self-compassion and self-directed strategies to reduce each 

• An activity to spark self-compassion 

Week 2: Biology and social dimensions of depression and anxiety 

• Benefits of healthy eating, sleeping, exercise and reducing stress 

• Coping with depressed mood and anxiety safely 

• Countering mental health stigma 

Week 3: Creating a PAUSE plan 

• Creating a plan to enhance social connectedness and self-compassion; and discussing barriers to its use 

• Brainstorming settings that help reduce feelings of crisis 

• Identifying professionals and agencies to contact for help 

Week 4: Seeking help 

• What counts as seeking help 

• Sources of help that have been overlooked and under-used 

• Strategizing to overcome barriers related to seeking help 

Week 5: Social support 

• Evidence for the helpfulness of social supports 

• Dealing with depression, anxiety, hopelessness and increase social support 

• How to communicate needs for support to family members, intimate partner, and friends 

• Using your social support network 

Week 6: Next steps 

• Re-examining PAUSE plan and making adjustments 

• Noticing and affirming self-compassion 

• Taking stock of the new social support network (including each other) 

Evaluation

Dr. Rothman and her research team will investigate changes in knowledge, attitudes, and behavior related to depression, anxiety, self-compassion, social support, and quality of life using pre- and post-intervention measures. 

She will also use data analysis to determine:  

• The percentage of interested autistic individuals who enroll in PAUSE 

• The percentage of sessions that participants attend 

• Reasons why people cease attending the intervention if this occurs 

• How closely implementation adheres to the original plan  

She will record facilitators’ views about any unanticipated events, and collect participants’ feedback about the experience of the intervention. The research team will also compare pre- and post-intervention survey responses.  

She will use that analysis to establish feasibility and obtain preliminary effect estimates to determine if the results are promising enough to warrant disseminating the program and moving forward to a larger trial of the program. 

Outcomes

For many autistic people who are not actively suicidal, yet struggle with occasional suicidal thoughts that they do not intend to act upon and feelings of depression, hopelessness, anxiety, lack of self-compassion, and stress, PAUSE can address those feelings and help contribute to suicide prevention.   

This research will enable Dr. Rothman and her team to produce an evidence-informed curriculum to address a serious gap in low-cost and accessible services for autistic adults: the lack of support for those with depression, anxiety, and low self-compassion. 

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.