OARacle Newsletter

In October 2024, OAR’s Board of Directors authorized funding for five applied autism research grants and one autism resource grant. These new research grants, totaling $288,930, bring OAR’s total research funding to $5.3 million since 2002. This article is the second of the previews to be featured in The OARacle this year.

Menopause is a natural part of aging for women, who make up half of the world’s population. Nonetheless, it remains an understudied and neglected area of research as do the experiences of autistic women and girls. To date, only five published studies have examined the experiences of autistic women during menopause. None of them took place in the United States. Understanding menopause from the perspective of autistic women is a first step toward needed supports and services and alleviating some of the uncertainty and taboo surrounding menopause.

In this two-year, OAR-funded study, “Into the Unknown: Autistic Females’ Mental Health Experiences During Perimenopause,” researchers Clare Harrop, Ph.D., and Gabriel Dichter, Ph.D., will address three goals to define and describe mental health challenges and experiences during perimenopause:

1. Characterize the mental health challenges and experiences of autistic women during perimenopause through an online survey.
2. Qualitatively describe the experiences and mental health challenges of perimenopausal autistic women in semi-structured follow-up interviews.
3. Examine how mental health and other challenges fluctuate over the course of a singular menstrual cycle in perimenopausal autistic women.

Perimenopause—the transition to menopause—typically occurs between the ages of 45 and 55, with an average duration of seven years. Some indications of perimenopause, such as hot flashes, difficulty sleeping, sadness/hopelessness, anxiety, and depression, may be more intense because of autism characteristics, such as sensory sensitivities and co-occurring mental health conditions.

This project capitalizes on the growing public and funding interest in menopause and wider women’s health. It will be, to the researchers’ knowledge, the first funded study of perimenopause in autism in the United States.

Dr. Harrop, an associate professor in the Department of Health Sciences at the University of North Carolina-Chapel Hill (UNC), leads the research team. Her research focuses on the intersectionality between assigned sex, gender, and neurodiversity. She has published extensively on the female characteristics of autism.

Dr. Dichter, a professor of psychiatry and a clinical psychologist in the UNC School of Medicine, is the co-principal investigator. He is also the director of research at the Carolina Institute for Developmental Disabilities and UNC’s Intellectual and Developmental Disabilities Research Center. His work focuses on mood disorders.

Methodology

This fully remote study will occur in three phases. In phase one, researchers will recruit 100 autistic women, 44 to 55 years old, from across the country via SPARK Research Match, which matches autistic people to autism research studies. Researchers will not limit inclusion based on gender identity. The women will complete an online survey designed to capture their experiences with perimenopause and their mental health challenges during perimenopause. The participants will include women in early (menstrual cycle length > 7 days shorter or longer than usual) and late-stage perimenopause (> 2 skipped cycles but <1 year since the last menstrual period). The survey will cover:

• Symptoms and experiences
• Challenges with accessing healthcare
• Current and prior mental health concerns

In phase two, 20 participants selected by the researchers from the group who completed the online survey will participate in follow-up interviews to explore in depth their experiences and challenges related to perimenopause. The interview will specifically focus on mental health challenges before and during perimenopause as well as women’s experiences accessing support and services for their perimenopause symptoms.

In the third phase, those 20 women (or, if some of those 20 women decline, others who completed the initial online survey) will complete daily surveys over the course of one full menstrual cycle to characterize fluctuations in mental health and associated behaviors and symptoms.

Evaluation

The research team will analyze the surveys and interviews to:

• Examine perimenopause symptoms, mental health, barriers to healthcare and support, and associated behaviors/symptoms, such as sleep, cognition, quality of life, and sex.
• Identify changes in mental health and quality of life during perimenopause; the experience of perimenopause and impact on work, leisure, relationships; and barriers to healthcare.
• Better understand how mental health challenges fluctuate over the course of a single menstrual cycle to determine how cyclic changes during perimenopause impact mental health and other symptoms/behaviors.

Outcomes

This study will add to the small, but growing, body of literature characterizing perimenopause and menopause in autistic women. The researchers’ larger goal is to develop a novel line of research examining the perimenopause transition in autistic women. They also plan to develop clinical guidelines for providers working with autistic women and guides for autistic women regarding the questions to ask and what to expect when they enter perimenopause and seek support. They will also form a small, international working group focused on autistic women’s health to strategize how to best serve autistic women as they enter this key reproductive and life stage. Such a group would meet virtually and include self-advocates with the goal of developing best practice guidelines and future funding proposals.

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.