There are currently four main researchers, all of whom are Autistic.  

Dr Rebecca Ellis

Dr Harriet Axbey

Dr Krysia Waldock

Dr Ami Nisa

Dr Aimee Grant is the person in charge of the whole study. If you want to make a complaint, contact Aimee.

Email: aimee.grant@swansea.ac.uk

WhatsApp message (text or voice note): 07745 747235

The study also has a Community Council of Autistic people, who help us to make decisions about the study, to make sure it’s safe and supportive for people who take part.

Some of our Community Council members include: Abigail, Ellen Firth, Hazel Lim, Kat Williams, Kay Ribbons, Monique Craine, Selena Caemawr and Willow Holloway.

You can find more about all of us on the “About Us” page.

These are ways in which the Community Council help on the project:

• Make all big decisions about the study with Aimee, for example:

• How we conduct our interview.

• How we collect and process data.

• Being involved in data analysis and writing for our publications.

For more information about how the Community Council was created, and what it seeks to do, read our paper here.

We want to know about Autistic peoples’ reproductive health (i.e., things relating to having a womb, or a ‘uterus’) and reproductive healthcare. This includes:

• Puberty.

• Periods (menstruation), including pain, changes in mood, pre-menstrual syndrome (PMS), premenstrual dysphoric disorder (PMDD) and amenorrhea (when your periods stop, for example because of low body weight).

• Symptoms or health conditions like heavy periods, fibroids, endometriosis or PCOS (Poly Cystic Ovarian Syndrome).

• Contraception and sexual health, for example, taking the contraceptive pill or having a “coil”.

• Healthcare for anything to do with having a womb (“uterus”), like smear tests, painful periods, accessing contraception, gender identity services and anything to do with hormones.

• Anything to do with pregnancy, including fertility treatment, pregnancy loss, birth, breastfeeding and chestfeeding.

• Perimenopause (also known as menopause or “going through the change”).

Information about recruitment for the study is no longer here as we now have all the participants we need. If you want to watch the original videos, please find them here.

We circulated our recruitment poster across social media and through organisations we work with. Participants were asked to complete a Qualtrics survey to see if they were eligible for the study.

We were looking for Autistic people who:

• Are Autistic (this includes self-identifying (also known as “self-diagnosis”) as Autistic – you do not need a diagnosis).

• Have a womb, or previously had a womb (including trans men and those who have had hysterectomies).

• Live in the UK and expect to stay living in the UK for the next 5 years.

• Are aged 16 and over.

• Are willing to share their experiences of reproductive health.

AND

Fit into at least one of these two groups:

• People aged 16-40.

• People who are peri-menopausal or menopausal.

We then selected 100 participants, 25 for each of our four groups:

·       Aged 16-22

·       Aged 22-40 and have not given birth

·       Aged 22-40 and have given birth

·       Experiencing perimenopause or menopause.

For the interviews, we offer participants the following:

·       Different modes of interview, including:

o   Video conference (eg: Zoom, Teams).

o   Written emails.

o   Text and voice messages.

·       Easy read versions of the documents provided.

·       A participant pack with stationery including notepads, pens, post-its, stickers and highlighters.

We also completed a research passport for each participant which included:

·       Communication preferences.

·       How they would like to start their interview.

·       If they needed breaks or reminders.

·       Topics they do not want to discuss.

Each of our participants receives compensation to thank them for their time.

We aren’t looking for any extra participants for our interview study.

You can request to sign up to our mailing list, this can be done via our contact page, or directly via email:

AutismM2M@swansea.ac.uk

We are hoping to do additional surveys in the future and will be sharing updates regularly.

Please also consider following us on social media platforms:

Instagram: AutismM2M

TiKToK: AutismM2M

Website: www.autismmenstruationtomenopause.com

Facebook: Menstruation to menopause research: Autistic community group and Dr Aimee Grant: Autism from menstruation to menopause

Youtube: @AutismMenstruationToMenopause

Our “Research” and “resources” pages are both updated when we have published something new.

Over the next few years we will be publishing work talking about a variety of topics covered in the interviews conducted.

Key an eye on our resources and research pages for published pieces.