Autistic People's Experiences of Menopause

We are delighted to welcome Dr Aimee Grant to share their recent work on autistic people's experiences of the menopause as part of the 26/27 seminar series of the IMH's Gender Affective Injustice and Health Theme.

Autistic menopause, healthcare and affective injustice

Autism is a life-long neurodevelopmental difference. Around 3% of people are Autistic. Women and those Assigned Female At Birth (AFAB) have historically been underdiagnosed, but this is beginning to change.

Menopause is a significant hormonal shift occurring in AFAB people. Beginning with perimenopause around the age of 45-55 (according to the NHS), a range of symptoms occur which can be debilitating. These include mental health changes, hot flushes and changes to the genitals and urinary system.

We undertook a systematic review of Autistic people’s menopause symptoms, identifying 15 items (8 peer reviewed). Furthermore, as part of the Autism from Menstruation to Menopause study, we are interviewing 25 Autistic people with menopausal symptoms every 6 months for 5 years, with participants having had around 4 interviews to date.

We found significant affective injustice throughout our review. Autistic people had limited knowledge of menopause symptoms generally, and Autistic menopause symptoms more specifically, and health services rarely added to this. Furthermore, whilst their symptoms often had significant impacts on their life, they had very limited healthcare support. The gold standard menopause treatment is Hormone Replacement Therapy (HRT), but this was rarely discussed in the literature.

The study’s interviews have found more information on Autistic people’s experiences of HRT, and of those participants who have tried it, the majority report it as positive.

The epistemic injustice that Autistic people face extends into the support they receive in relation to menopause, from family and friends as well as health services. Tailored solutions, such as Autistic menopause peer support, may be worthy of trial, although they should not replace improving health services.

About the speaker

Dr Aimee Grant is an Associate Professor in public health at Swansea University and Wellcome Trust Career Development Fellow. Their fellowship project, 'Autism: from menstruation to menopause', uses participatory research with the Autistic community to better understand reproductive health.

This online event will be of interest to anyone researching reproduction, menopause, reproductive justice, affective injustice, or autistic lived experience.

***

This online event is free to attend. The virtual link will be shared on the day.

If you have any accessibility requirements, please get in touch with us at imh.events@durham.ac.uk.

This online seminar is hosted by the Institute for Medical Humanities' Gender, Affective Injustice, and Health Research Strand.