Autism and the Menopause Transition: A Mixed-Methods Systematic Review

Abstract

Background:

The menopause transition commonly occurs between the ages of 45 and 55 years. In a general population, hormonal shifts result in a range of biological, psychological, and social changes. Recently, research has begun to focus on Autistic people’s experiences of the menopause.

Methods:

We undertook a prospectively registered (PROSPERO: CRD42023450736) systematic review of research and firsthand accounts from grey literature related to Autism and menopause. We utilized the Joanna Briggs Institute convergent integrated synthesis approach.

Results:

Our search identified eight studies and seven pieces of grey literature, primarily comprising Autistic people. No studies evaluated interventions or provided data from those supporting Autistic people. We developed three themes. First, “knowledge of the menopause transition and peer support” focused on Autistic people’s lack of knowledge of menopause symptoms, including differences for Autistic people, and the role of peer support in obtaining knowledge. Second, “Autistic people’s experiences of menopausal symptoms” describes a broad range of negative symptoms, which sometimes had significant impacts on mental health and daily activities. Limited quantitative evidence highlighted increased menopause symptom severity for Autistic people compared with non-Autistic comparison groups. Menopause symptoms impacted on work and relationships, and there was an interrelationship between menopausal symptoms and Autistic identities. Third, “treatment of menopause symptoms” describes nonmedical and medical approaches, including hormone replacement therapy, to reduce symptom impacts. Most reports of medical treatment highlighted barriers to access, or negative experiences of appointments.

Conclusion:

There is a clear need for better menopause supports for Autistic people. This should include Autism-friendly information to increase knowledge of menopause and how it may impact Autistic people. Corresponding information should also be available for health professionals, with systemic barriers to health care also reduced to allow the best chance for Autistic people to receive menopause support. Autism-specific menopause peer support may be worthy of evaluation.

Community Brief

Why is this an important issue?

Menopause is when menstrual periods stop forever. The menopause transition usually happens around the age of 45–55 years. People usually have symptoms for several years before the menopause; symptoms can have a big impact on people’s lives.

What is the purpose of the review?

To bring together all the existing research to better understand the menopause-related experiences and needs of Autistic people.

What did the authors do to review the literature?

We did a systematic literature search and found firsthand accounts, such as blogs, that focused on Autistic experiences of menopause.

What studies did the authors find?

Our search found eight studies and seven other firsthand accounts. Most of the sources only included Autistic people. Two studies had some non-Autistic participants as a comparison group.

In summary, what did those studies show?

We developed three themes.

First, “knowledge of the menopause transition and peer support.” Most Autistic people didn’t know much about menopause symptoms when they started having them. This included the range of menopause symptoms that Autistic people could have. Also, some Autistic people used online forums and groups to find out more about what the menopause is like for Autistic people.

Second, “Autistic people’s experiences of menopause symptoms” describes lots of symptoms:

mental health, meltdowns, and irritability (found in 11 sources);

cognition, fatigue, and functioning (found in 10 sources);

sleep (found in 10 sources);

hot flushes and night sweats (also called “vasomotor” symptoms; found in nine sources);

increased sensory sensitivity (found in eight sources);

pain and headaches (also called “somatic” symptoms; found in eight sources);

changes to periods (found in seven sources);

changes to how they communicated, including masking (found in six sources);

changes to their weight, hair, skin, and teeth (found in six sources); and

changes to their genitals and peeing (called “urogenital” symptoms; found in three sources).

Two studies found Autistic people had worse menopause symptoms than non-Autistic people. Autistic people said menopause symptoms impacted on work and relationships. They also changed how people felt about themselves.

Third, “treatment of menopause symptoms” describes nonmedical ways people tried to feel better, such as taking more rest. It also contains experiences of seeking medical help. Most people who saw a health professional said it was a bad experience for them. Not many people had tried hormone replacement therapy (also called “HRT”).

What are the remaining gaps in the literature?

There wasn’t much information about the following:

How menopause impacted underserved parts of the Autistic community (“intersectionality”).

Urinary incontinence (peeing yourself) and other urogenital symptoms, which can be common in menopause.

Using HRT.

There weren’t any studies that tested tools or approaches to make menopause easier for Autistic people.

Based on this review, what do the authors recommend?

Autistic people need better information and tools to prepare for, and during, the menopause transition. This should be developed with Autistic people and tested to ensure it is good quality; peer support models may be worthy of development and evaluation. Health professionals also need more information on Autistic people’s menopause transition.