Updated: Jun 7
Join Dr. Regan to learn about the vital topic of autism and menopause. You will understand areas of concern reported by women on the spectrum, and hear how having an ASD diagnosis helped many to understand and cope with their unique experiences.
THE GRATITUDE OF KNOWING YOU ARE NOT ALONE!
Thank you to Bobbi, a listener who offered me a glimpse of her story, and highlighted this critical topic. I thoroughly enjoyed diving into the literature about the broader issues of hormone and neuroendocrine changes that impact the experience of autism. We have so much more to learn!
Another blessing was observing others join Bobbi in the chorus by sharing their own experiences and validating her journey. I'm so grateful to hear the echoing of a collective voice around this topic and am hopeful it will strengthen women in the autistic community across all life seasons.
WHAT AUTISTIC WOMEN DESCRIBE
I believe you will be amazed and motivated when you learn about the experiences of autistic women during menopause. Although much more research is needed, an initial project was published in January 2020 by Moseley et al. In reading this paper (citation below), you will hear the voices of women describing their individual experiences.
One take-home message is that the women experienced an "amplification" of their overall autistic experience. "Introducing the term masking, participants noted that this had become much more difficult, and previous effective coping skills were failing: 'When I talk about that time, I say, "My autism broke." Before that, my autism was working fairly well for me, providing me with good job skills.'"
Many credited the diagnosis of autism (which often had been made somewhat before or after the onset of menopause) as being of significant value in helping them understand and cope with the new experiences.
Several women described social communication as even more difficult than before the hormonal shifts. They struggled to put their physical and emotional experiences into words for doctors and family to understand. Some also noted worsening sensory issues as negatively impacting their intimate relationships.
Organization, clear thinking, and executive function skills were problematic. The impact on executive function abilities led to more erratic emotional regulation. One woman stated, "During menopause, I was on 3 meltdowns per week at times . . . My meltdowns were of the nature that people would call a 'basket case'. . . Would strip down to underwear sometimes during a meltdown at work."
Menopause also amplified pre-existing difficulties with health behaviors, including sleep. Reduced sleep led to less emotional and cognitive resilience during the day.
In addition to the significant physical changes, ASD women noted that the amount of shifting in their personal lives was overwhelming. Many described having to navigate the death of parents and young adult children leaving the nest, or even break-ups with partners. The experience of several significant life changes and physical shifts felt overwhelming.
COMRADERY AND CONCLUSIONS
I believe that knowing you are not alone in your experiences will bring you hope and a sense of grounding. Sometimes having a context for undertanding what feels chaotic and confusing is often, in itself, very freeing.
We have significant room for growth and deeper understanding as we increasingly focus on autism across the lifespan. In addition to studying the trajectory of autistic symptoms in women, the study of how autistic experiences change for men is also vital. I have worked with men in mid-life who also describe emerging problems with sensory processing and increased difficulty with repetitive behaviors and relationships.
Understanding these topics more completely will lead to better support for all individuals and to innovations which ease the physical and emotional chaos experienced during hormonal shifts.
Moseley, R. L., Druce, T., & Turner-Cobb, J. M. (2020). 'When my autism broke': A qualitative study spotlighting autistic voices on menopause. Autism. https://doi.org/10.1177/1362361319901184