'When my autism broke': A qualitative study spotlighting autistic voices on menopause

Autism. 2020 Aug;24(6):1423-1437. doi: 10.1177/1362361319901184. Epub 2020 Jan 31.

Abstract

Autistic girls are known to struggle with the onset of menstruation, reporting that during their period, sensory sensitivities are heightened, it becomes more difficult to think clearly and control their emotions and they struggle more with everyday life and self-care. Yet surprisingly, nothing is known about how autistic women handle the menopausal transition in midlife. In non-autistic women, the menopause brings many physical changes and challenging symptoms from hot flushes to feeling more anxious and depressed. Because autistic women are already vulnerable to suicide, poor physical and mental health, and because they may already struggle with planning, controlling their emotions and coping with change, the menopause may be an especially challenging time. Yet, not one single study exists on the menopause in autism, so we conducted an online discussion (focus group) with seven autistic women. They confirmed that very little is known about menopause in autistic people, very little support is available and that menopause might be especially difficult for autistic people. Autism-related difficulties (including sensory sensitivity, socializing with others and communicating needs) were reported to worsen during the menopause, often so dramatically that some participants suggested they found it impossible to continue to mask their struggles. Participants also reported having extreme meltdowns, experiencing anxiety and depression, and feeling suicidal. This study highlights how important it is that professionals pay attention to menopause in autism, and discusses future research directions.

Keywords: autistic people; autistic women; climacteric syndrome; knowledge; menopause; perimenopause; reproductive lifespan; sensory sensitivity; support.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Anxiety Disorders
  • Autism Spectrum Disorder*
  • Autistic Disorder*
  • Female
  • Humans
  • Menopause
  • Qualitative Research