OARacle Newsletter

In November, OAR’s Board of Directors authorized funding for eight applied autism research studies in 2023. These new grants, totaling $313,712, bring OAR’s total research funding to more than $4.7 million since 2002. This article is the second of eight previews to be featured in The OARacle this year.   

Unhealthy substance use, which includes alcohol, marijuana, illicit drugs, and medications used for non-medical reasons, is a public health problem. One in 10 (23 million) Americans have substance use disorder (SUD), according to the National Epidemiologic Survey on Alcohol and Related Conditions. SUDs may be just as prevalent or even more prevalent among autistic adults than non-autistic adults. Autistic people use substances to cope with co-occurring mental health conditions and perceived social difficulties.

Evidence-based SUD programming can help those who may not have a SUD but engage in unhealthy substance use as well as those who may have a substance use disorder. For autistic people, the need for substance use education is even more critical as research shows that less than half of autistic youth received school-based education about unhealthy/hazardous substance use.

Evidence-informed curricula are available to address SUD/unhealthy use in the general population. However, there are no evidence-based alcohol and drug interventions proven effective for autistic people.

For this OAR-funded, two-year study, researchers Laura Graham Holmes, Ph.D., and Emily Rothman, Sc.D., will develop and pilot-test Alcohol and Drug Choices for People on the Autism sPecTrum (ADAPT). The online ADAPT program is based on an in-person program, the Substance Use/Brain Injury (SUBI) Bridging Project, originally developed for adults with traumatic brain injury.

Dr. Holmes is a clinical psychologist and an assistant professor at City University of New York’s Hunter College. She has more than 10 years of experience studying the health and wellbeing of autistic people, particularly under-researched areas such as sexuality and substance use. Dr. Rothman is a professor of community health science at the Boston University School of Public Health and the chair of the Boston University Sargent College Department of Occupational Therapy. Her research has focused on interventions that teach healthy dating and relationship skills and substance use prevention to youth and adults, including autistic adults.

For their study, ADAPT: Development of a Substance Use Prevention Class for Autistic Adults, Drs. Rothman and Holmes will:

1. Work with an autistic advisory board to finalize the ADAPT curriculum to address the unique strengths and characteristics of autistic people and rework it as an online, interactive small-group course.
2. Implement ADAPT with 30 autistic adult participants to assess immediate and long-term outcomes of substance use knowledge, expectancies, and behavior. ADAPT is for autistic people who are concerned about their own alcohol or other drug use and want a healthier relationship with alcohol or other drugs. They do not need to have a diagnosed SUD.

Methodology

Aim 1: Finalize ADAPT: The research team will finalize the ADAPT curriculum, including creating PowerPoint decks and activities, and adapting worksheets. As they work on the curriculum, they will convene the advisory board to obtain feedback on the content and research procedures and modify the curriculum and research project plan accordingly.

Aim 2: Pilot the curriculum: Thirty autistic adults (age 18 and over and including those who are self-diagnosed) will be recruited to participate in the study. Participants will receive gift cards worth a total of $200 for completing surveys, a self-monitoring tool, and qualitative interviews. Two autistic co-facilitators from the Asperger/Autism Network (AANE) will facilitate the online classes.

The participants will complete a pre-survey before starting the class. They will be divided into small groups of six people each. Each group will participate in ADAPT, with new groups starting every three weeks until all five groups have completed the course. The six-week course will consist of weekly 90-minute classes.

The research team will send materials prior to each week’s class so that participants can review them beforehand if desired. Participants will also take a weekly survey to indicate which home practice assignments they completed, report on how the assignments went and how the class is going, and list topics that they want to discuss in future classes. They will also complete a self-monitoring tool to assess substance use.

After all of the classes are complete, participants will participate in brief qualitative interviews.

The research team will then reconvene the autistic advisory board and ask for their feedback based on their review of the revised curriculum; a report including basic descriptive outcomes from the data, fidelity, and acceptability of the intervention; and the facilitators’ thoughts on the curriculum. Their feedback will be used for the final revision of the curriculum.

Evaluation

Using a variety of evaluation tools and questionnaires, the research team will compile data on:

• Past drug and alcohol use and use during class participation, and for one month after, as estimated by the participants.
• Outcomes based on participation in the class.

Data analysis will give the researchers information on:

• The implementation process and how closely it adhered to the plan.
• How participants’ knowledge changed as a result of taking the class.
• How facilitators viewed the class.
• How participants experienced and valued the class.

Practical Relevance

This study aims to support autistic adults in a new way by helping them develop healthy relationships with substance use. The goal is to offer a theoretically informed, rigorously designed, and evidence-based substance use education program specifically designed for autistic adults. In addition, the program will be available for free when the pilot test is completed, providing an effective, inexpensive, and appealing program for autistic adults.

Substance use disorder is associated with a host of related physical and mental health issues, among them heart disease, certain cancers, hypertension, and diabetes as well as depression, anxiety disorders, and suicidal ideation and behaviors. SUD is also associated with higher rates of unemployment, fewer supportive social relationships, isolation, intimate partner violence, relationship instability, and lower quality of life. Autistic people already experience some of these adverse outcomes, so addressing SUD and other factors that could exacerbate them is critical to their well-being and health.

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.