Table 2. Characteristics of studies.
| First Author and year published | Setting | Study details | Study quality | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Year of data collection | Funder | Country | Identity first/person first language | Any other factors which may affect results | Aim | Recruitment | Participants | Research design (JBI) | Data Collection | Data Analysis | Words included | JBI score | |
| Brady et al. (2024) |
Not stated, but ethical approval in 2022 | Not stated | Canada (n=13) & UK (n=11) |
Identity first | Incentives provided. Questions provided in advance. Autistic team member present during data collection. Included self-identifying as Autistic Majority of participant: white and female. |
Explore how Autistic people in the UK and Canada experience menopause, access service, support and information. | Social media via community research associates | 24 Autistic people (self ID or diagnosed) who were navigating menopause or postmenopausal. Aged 40-71 |
Qualitative | Demographic and Autistic menopause questionnaire (n=23) Semi-structured online focus groups (n=16 participants) and online interviews (n=8) |
Qualitative Reflexive thematic analysis. |
2,780 | Yes: 9 Unclear: 1 |
| Charlton et al. (2024) | 2023 | Unfunded | Not stated | Identity first | Included self-identified Autistic people in the Autistic group; validated using RADDS 14. Study not specifically about menopause, so may have attracted a wide group of participants. Sample size was relatively large. Online survey may be inaccessible to some potential participants. |
Examine rates of menopause symptoms in Autistic and non-Autistic people at different stages of menopause. | Autistica’s research network, Cambridge Autism Research Database, author’s contacts. | 242 Autistic & 100 non- Autistic aged 40+ years at different stages of reproductive life (premenopausal - postmenopausal) | Cross sectional | Online survey | ANOVA, chi-square &ANCOVA |
1,074 | Yes: 7 Unclear: 1 |
| de Visser et al. (2024) | Not stated | Unfunded | United Kingdom |
Identity first | Very broad range of ages; not all participants were menopausal. Sample was highly educated and white people were overrepresented. Many participants had other neuro- developmental disabilities | Explore Autistic people’s experiences of reproductive and sexual health in the context of primary healthcare. | Autistica’s email list (n=13,000), social media | 136 Autistic adults aged 1871 years | Cross sectional | Online survey, using open and closed questions | Descriptive statistics, MANOVA and thematic analysis | 1,889 | Yes: 8 |
| Groenman et al. (2022) | Not stated | Innovational Research Incentives Schemed VICI (NWO) | Netherlands | Mixture | Did not ask if HRT was used. | Explore: prevalence of PMDD; Autistic menopause symptoms during menopause transitions; relationship between menopause symptoms and Autism, anxiety, depression and ADHD | Mental health institutions; social media; Autism networks; researchers’ social networks. | Autistic people aged over 40; self-reported irregular or absent menstruation. Autistic (n=30): Diagnosed as Autistic; Excluded: intellectual disability, neurological disorders, alcohol or drug dependency. Control (n=35): Excluded: psychotic episodes, likely Autistic or ADHD |
Cross sectional | Dutch version of the Menopause Rating Scale; Symptom Checklist-90 (SCL-90) subscales used for depression and anxiety proxy measure; ADHD self report (ASHD- SR); Autism Quotient (AQ) |
f-test with group as independent variable and MRS score as the outcome. Bayseian analysis to assess group effects. Regression analysis to assess if MRS scores were associated with psychological symptoms. | 318 | Yes: 6 Unclear: 2 |
| Jenkins et al. (2024) |
2023 | Social Sciences and Humanities Research Council of Canada |
International, including: United Kingdom (n=211); United States (n=123); Canada (n=85); Europe (n=60) |
Identity first | Few participants from the Global South; majority of participants were white; lack of accessibility to potential participants with learning disabilities; recall bias in some participants. Included those self-identifying. Autistic people involved in developing and undertaking the research. |
To explore the support needs of Autistic people during menopause | Social media, researchers’ networks and support groups. | 508 Autistic people with lived experience of menopause transition. | Cross Sectional |
Online survey | Descriptive statistics, ANOVA. Reflexive Thematic Analysis | 3,624 | Yes: 8 |
| Karavidas and de Visser (2021) | Not stated | Not stated | UK | Identity first | Offered in person or Skype interview mode. Included self-identifying as Autistic. Did not collect ethnicity or HRT use. Participants were “expert” in Autism; may be unrepresentative. One participant was 16 years post menopause ‘change’. |
To understand Autistic people’s understandings of the menopause change. | Social media advertisement. | 7 peri- (n=3) or post (n=4)- menopausal Autistic AFAB people who did not have intellectual disabilities. Aged 39-63. 6 participants = formal Autism diagnosis. |
Qualitative | Semi-structured interviews via Skype. Participants were able to review and amend their transcript. |
Material-discursive- intrapsychic approach within a critical realist epistemology, informed by thematic decomposition | 3,858 | Yes: 10 |
| Moseley et al. (2020) | Not stated, but appears to be 2019 (Moseley et al., 2021) | Bournemouth University |
International: British (n=4), South African (n=1) Australian (n=1) Unknown (n=1) | Identity first | Questions provided in advance. Small sample; did not ask if HRT was used; may be unrepresentative of Autistic community. |
Explore: knowledge, difficulties and support needs relating to menopause. | Two Autistic- run Facebook groups for Autistic adults | 7 Autistic (including self identifying) AFAB people going through the menopause aged 49-63 years. | Qualitative | Online focus group. AQ and RAADS- 14 used to assess Autism status. |
Thematic analysis | 1926 | Yes: 6 Unclear: 3 No: 1 |
| Moseley et al. (2021) | 2019 | Bournemouth University |
International: British (n=13) Canadian (n=2) South African (n=1) Australian (n=1) |
Identity first | Questions provided in advance; range of interview modes provided to increase comfort. Did not ask about mental health diagnoses; may be unrepresentative of Autistic community; recall bias (1 participant 21 years since last period). Includes six participants from Moseley et al. (2021). |
Explore: menopause awareness, experiences and impacts, support needs. | Two Autistic- run Facebook groups for Autistic adults | 17 Autistic (including selfidentifying) participants who believed they were going through the menopause (n=6) or had gone through it (n=11). 16 were cis women, aged 41-66 years. | Qualitative | Qualitative interviews, meeting participants access needs, including a/synchronicity AQ and RAADS- 14 used to assess Autism status. |
Inductive thematic analysis guided by Interpretative Phenomenological Analysis principles. | 2184 | Yes: 7 Unclear: 2 No: 1 |