A new evidence review undertaken by Swansea University academics to better understand the menopause-related experiences and needs of Autistic people, has revealed significant gaps in knowledge, support, and healthcare provision, and identifies a need for targeted resources and interventions.
Dr Aimee Grant from the University's School of Health and Social Care, who led the review published in the Autism in Adulthood journal, conducted a systematic search of academic studies and first-hand accounts to explore Autistic people's experiences of menopause.
Dr Aimee Grant from the University's School of Health and Social Care, who led the review published in the Autism in Adulthood journal, conducted a systematic search of academic studies and first-hand accounts to explore Autistic people's experiences of menopause.
She identified three key findings: a lack of knowledge about the menopause; experiences of a broad range of menopause symptoms and inadequate treatment of menopause symptoms.
The review indicated that Autistic people were often unaware of menopause symptoms when they began experiencing them, but online forums and peer groups played a crucial role in helping them learn about the menopause transition and share their experiences.
Secondly, the review suggested that there is a wide range of menopause symptoms reported by Autistic people including mental health challenges, cognitive issues, fatigue, reduced functioning, sleep disturbances, hot flushes and night sweats. These are similar to what is seen in a general group of people going through menopause, but Autistic people could also find their sensory sensitives increased, sometimes leading to significant overwhelm and distress. Two studies found Autistic people had worse menopause symptoms than non-Autistic people. Some participants said menopause symptoms impacted on work, relationships and how they felt about themselves.
Finally, the analysis identified that the treatment and support experienced by Autistic people varied widely with many using non-medical coping strategies, such as increased rest. Most interactions with healthcare professionals were described as negative and few participants had tried Hormone Replacement Therapy (HRT).
The review identified several areas lacking sufficient research:
- The impact of menopause on underserved groups within the Autistic community
- Urogenital symptoms, including urinary incontinence
- Use and effectiveness of HRT
- Development and testing of tools to support Autistic people during menopause
Dr Grant said: "My review shows there is a real need to develop high-quality, co-produced resources to help Autistic people prepare for and navigate menopause. I also think that peer support models should be explored and evaluated and that healthcare professionals need to have tailored training and information to provide appropriate care for Autistic people during this life stage."
Willow Holloway, Director of Autistic UK and one of the study's authors, said: "We urgently need recognition of the different communication and access needs Autistic people have during menopause. It's important that health professionals focus on the additional barriers of being Autistic, which can create a double-edged sword by adding to existing health inequalities. This review involved Autistic people with lived experience, and it is essential that the solutions are co-developed."
Read the review published in the Autism in Adulthood journal here .
