The transition to menopause for autistic individuals in the US: a qualitative study of health care challenges and support needs.

OBJECTIVE

The goal of the current study was to better understand autistic people's experiences with the menopause transition, by focusing on their symptoms, healthcare interactions, and receipt of informal support.

METHODS

This was a qualitative research study. We conducted one-on-one videotelephone interviews with 21 autistic adults who had experienced, or were currently experiencing, perimenopause in the United States. Data were coded by two independent coders. We used a thematic analysis approach.

RESULTS

The analysts derived several overarching themes related to perimenopausal symptoms, barriers to healthcare, and informal support networks. Participants reported increased sensory sensitivities during perimenopause and reported that these severely impacted their quality of life. These sensory sensitivities also compounded vasomotor symptoms of perimenopause causing an extreme and overwhelming confluence of symptoms and difficulties. Despite this, many participants felt that their healthcare providers supported them insufficiently. Participants felt unprepared for the intensification of sensory sensitivities during the menopause transition due to a lack of information about perimenopause from healthcare providers and because their social support network members lacked information about perimenopause.

CONCLUSIONS

Autistic people face unique challenges during the menopause transition, which may include managing sensory sensitivities and navigating healthcare systems. Results highlight the need for education about menopause earlier in life for autistic people. Findings further demonstrate the need for holistic approaches to perimenopausal symptom management and better training for providers on the unique needs of perimenopausal autistic people.