OARacle Newsletter

In November, OAR’s Board of Directors authorized funding for eight applied autism research studies in 2024. These new grants, totaling $297,569, bring OAR’s total research funding to more than $5 million since 2002. This article is the last of the previews to be featured in The OARacle this year.

Suicide and self-harm are serious global public health concerns. Autistic individuals are at higher risk of dying by suicide as compared to the general population and more likely to experience self-harm compared to the general population, which is associated with an increased risk of suicidality. No documented research has been conducted on the mental health risk factors associated with self-harm or how to prevent those behaviors in the autistic population in low- and middle-income countries, including Pakistan.

This two-year OAR-funded study, “A Pilot Trial of a Culturally Adapted Intervention to Prevent Self-harm in Young People with Autism” will evaluate the feasibility and acceptability of a brief psychological intervention adapted for autistic young adults in Pakistan. The “Youth Culturally Adapted Manual Assisted Problem Solving Training” intervention is based on cognitive behavioral therapy (CBT), which has been shown to be an effective treatment for autism. It has also shown promise in reducing episodes of self-harm, suicidal ideation, depression, and hopelessness in adult patients with a history of self-harm. The goals of the study are to:

• Determine if the intervention has the potential to reduce self-harm and suicidal behaviors in young autistic adults.
• Inform the design of future multi-site, randomized controlled trials.

Nadia Shafique, Ph.D., and Nasim Chaudhry, M.D., are the co-principal investigators for the study. Dr. Shafique is an assistant professor in the psychology department at Foundation University, Islamabad. In addition, she is a research fellow at the Pakistan Institute of Living and Learning, an organization devoted to mental health care and research. She provides assessment and therapies to autistic individuals and established an autism lab at Foundation University.

Dr. Chaudhry is a professor of psychiatry at Foundation University, consultant psychiatrist, and the chief executive officer for the Pakistan Institute of Living and Learning. As a psychiatrist in the United Kingdom for more than 15 years, she worked with people with intellectual disabilities and has conducted research on interventions for people with intellectual disabilities and parents of people with intellectual disabilities.

Methodology

Eighty participants will be recruited for the study, ranging in age from 18 to 24 years. They must be capable of giving consent and communicating. Half of the participants will receive the culturally adapted intervention revised for use with autistic adults and the other half will receive treatment as usual.

A patient and public involvement and engagement group, made up of young autistic adults, parents, mental health professionals, behavioral therapists and social workers with experience working with autistic individuals, and representatives from the university education department will provide feedback on the intervention, mode of delivery, recruitment, and study materials. A multidisciplinary team of mental health professionals and therapists will serve as advisors for adapting the intervention for use with autistic adults.

The intervention comprises eight to 10 one-hour sessions delivered individually over three months, weekly for the first month and then every two weeks. The manual for the intervention includes psychoeducational components and a comprehensive cognitive behavioral assessment of self-harm attempts. The intervention design employs the virtual stories of four young adults to engage participants. In addition, the therapist delivering the intervention and the participant will together decide on a list of therapeutic techniques that are most relevant to the young person’s problems. Family members will be included in one session near the end of the intervention.

The research team will have safety protocols in place to protect participants and the therapists working with participants from harm. The researcher will also discuss the risks with participants before consent using age-appropriate language and pictorial sheets. Participants may choose not to participate if they feel the topics will cause significant emotional distress or increased feelings of self-harm. Participants will be free to withdraw from the study if they become distressed.

Research staff will receive training on identifying and managing distress and will discuss any signs of distress with the participant’s primary care center and parents/caretakers. They will refer any at-risk participants to nearby psychiatric facilities for detailed assessment, observation, and treatment, if needed. A partnership with a phone helpline will provide free telehealth services, and psychologists trained in suicide prevention intervention are available.

Evaluation

Intervention participants will be assessed before and after the intervention. Participants receiving treatment as usual from their autism centers will receive detailed baseline assessments.

Practical Relevance

In low-income countries, like Pakistan, most people with mental health difficulties do not receive appropriate treatment. This study has the potential to provide an effective intervention for young autistic adults at risk of self-harm and suicidal ideation. In addition, the research team hopes that the intervention could increase awareness, widen understanding of the need to ask for help, and provide information on where to receive care through presentations with community leaders, interviews with local Pakistani media, and promotional material in places such as clinics and schools.

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.