In November, OAR’s Board of Directors authorized funding for six new applied autism research studies in 2021. These new grants, totaling $240,000, bring OAR’s total research funding to more than $4.4 million since 2002. This is the second of six previews to be featured in The OARacle this year.
Autistic college students report increased depression, anxiety, marginalization, and social isolation as they navigate an unfamiliar and often stressful environment. Many college and university mental health programs are not equipped to help these students. At post-secondary institutions that do have mental health programs designed to meet the needs of autistic students, the programs are often lengthy and require set-aside time that students may have difficulty fitting into their schedules. They also require more experienced clinicians or supervision by a clinician with autism expertise.
Vanessa Bal, Ph.D., an associate professor and the Karmazin & Lillard Chair in Adult Autism at Rutgers, and Evan Kleiman, Ph.D., an assistant professor in the psychology department, will lead an OAR-funded study to develop a telehealth-delivered intervention—an emotional support plan (ESP)—to help autistic students prepare for potential stressors and provide them with online coping tools and strategies. The goals of the study are to:
- Identify mental health needs of autistic students.
- Develop resources to inform and guide mental health care of autistic students.
- Pilot methods to create ESPs for autistic students.
Phase 1: Focus groups: Three focus groups, made up of Rutgers students, parents, and clinicians and program staff, will provide information about how students cope with distress and suicidal thoughts and identify clinical concerns and awareness/accessibility of campus resources.
Phase 2: ESP intervention development: The research team will use information collected from the focus groups to adapt the ESP intervention and risk protocols for clinicians, a self-guided version for students, and a mental health guide also for students.
The self-guided ESP materials will include a video introducing what an ESP is and why the student should develop one; written step-by-step instructions and worksheets, with accompanying instructional videos that explain each of the ESP components and guide students in creating theirs; an interactive menu of strategies and resources; and FAQs for clinical and technological questions.
Phase 3: Pilot: Twenty Rutgers students will participate in the clinician-led ESP, with 10 assigned to receive ecological momentary assessment and 10 assigned to monitoring visits only. Fifteen students at other New Jersey institutions will participate in the self-guided version of the ESP. Ecological momentary assessment provides real-time data that allows detailed study of factors affecting behaviors and emotions in real-world contexts. Distress is a highly variable state that is difficult, if not impossible, to accurately report retrospectively. The ecological momentary assessment remedies that difficulty, yielding insights into when, how, and for whom the intervention is working.
Participation will last over a full college term (15 weeks). All of the students will complete assessments before participating to provide baseline data on demographics, student status (e.g., major, department, housing), autism symptoms, mental health, depressive and anxiety symptoms, coping methods, emotional function, and quality of life. Their parents will also complete assessments measuring depressive and anxiety symptoms, coping methods, and emotional function.
Students participating in the clinician-led ESP will complete two 1-hour telehealth sessions one to two weeks before their term starts. In the first telehealth session, a graduate student clinician will review emotion regulation strategies from a menu and provide brief coaching. During the second telehealth session, the clinician will help the student create their ESP and teach them how to use the app. Students in the self-led group will be asked to create their ESPs one to two weeks before the term stars.
- Signs of stress/potential stressors
- Individual coping strategies (e.g., breathing exercises)
- Social supports (e.g., call a friend)
- Reasons why regulation is important (to motivate strategy use)
- Ways to reduce stress in the environment
- Professional contacts
- Reasons for living, used if the student displays suicidal risk
- Ways to make the environment safe, also for use in case of suicidal risk
The research team will collect passive engagement data, such as frequency and duration of ESP views and if links to resources are pressed.
In the first six weeks of their term, students in the clinician-led ESP will have weekly 30-minute telehealth visits in order to complete assessments and questionnaires about suicidal thoughts, social and other activities, difficult and positive situations, and attempts to initiate social interactions. The clinician will also collect the number of hours a student has used supports, such as tutoring and therapy, and the ESP. For the first six weeks, students in the self-guided group will be emailed a link weekly to complete the assessments and questionnaires and report support hours and ESP use. For the last weeks, assessments will take place every other week.
All of the students will be prompted on their phones four times a day during the first six weeks of the term to report activities, suicidal thoughts, distress, and ESP use since the last prompt. If distress is indicated, the ESP is displayed. Afterwards, participants will re-rate their distress level, allowing the research team to assess if the ESP reduced distress from pre-to-post-intervention. If a student’s report indicates a high risk, the research team will receive an e-alert. A clinician will conduct a risk assessment and consult with Dr. Bal and Dr. Kleiman to determine if a clinical referral or immediate care is needed.
Using data collected during the term, the research team will compare outcome variables, including suicidal thinking, depressive symptoms, and anxiety symptoms. They will also conduct pre-to-post study changes in the measures assessed for all of the students. Students will also report their GPA and credits earned, emotional functioning, and quality of life and participate in a telehealth visit to complete a satisfaction interview at the end of the term. Parents will complete assessments of emotional functioning and a satisfaction survey. The research team clinicians and Rutgers College Support Program staff will also participate in satisfaction interviews.
The study will result in several resources, including:
- A proactive intervention aimed at reducing stress for post-secondary autistic students and promoting more timely access to care for those who need it.
- “A College Student Mental Health Guide” that will serve as a companion to OAR’s “A College Guide for Students on the Spectrum.”
- ESP materials and the web-based app, which will be made available to anyone who wants it, as well as training materials and guidelines for clinicians.
In addition, the study will highlight the need for mental health awareness and models for broader on-campus implementation of supports and provide methods for campuses to incorporate such supports into existing programs. It will also provide information regarding the factors that produce distress, suicidal thoughts, and other behaviors during post-secondary education.
The results of this study will increase awareness and understanding of mental health concerns for autistic students and inform brief, cost-effective assessment and intervention procedures. Having both clinician and self-guided programs will enable more institutions and students to make use of them.
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.