Welcome to The Auti Peri Q&A Series 💕

Elevating the voices, lived experiences and reflections of autistic people’s menopausal transition.

If you’ve met one autistic menopausal person,

you’ve met one autistic menopausal person.

— Autistic proverb —

Hi, I’m Sam. A late diagnosed neurodivergent woman, a tenacious midlife struggler, and an advocate for people in autistic perimenopause here at The Autistic Perimenopause: A Temporary Regression AKA The Auti Peri.

I have been publishing my own personal auti peri challenges and medical/lifestyle symptom management since April 2024. I am currently in a temporary, reversible, medical/chemical menopausal state using hormone blockers (Zoladex/GnRH analogues) to treat and manage my late-diagnosed pre-menstrual dysphoric disorder (PMDD). I have written about it here, here and here.

I am also self-advocating for a hysterectomy currently due to suicidal ideation and other extreme symptoms caused by perimenopausal hormonal fluctuations. Hopefully 2025 will be the year I can finally declare myself post-menopausal, aged 43 (if before June!) or 44 (if July onwards)…

GnRH analogues treatment is often used alongside cancer treatments to prevent hormonal exacerbation of some cancers. It can also used as part of gender affirming hormone therapy (GAHT).

For others, a menopausal state may be brought on surgically through a hysterectomy and oophorectomy (removal of the uterus and ovaries), with little warning and no time to mentally prepare.

Sharing my own experience cannot be representative of all the ways autistic menopause is experienced. This is an unavoidable and inevitable phase of life for women and AFABs fortunate enough to age.

Mine is only one narrative.

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💕Autistic perimenopause is a highly individual, dynamic and sometimes prolonged life stage represented by fluctuations in physical, psychological and cognitive symptoms that can be different for everyone. 💕

None of us should have to feel alone at this time of our lives.

Anecdotal and evidence-based research shows us that:

• Autistic people may start perimenopause earlier than non-autistics, and may be dismissed by healthcare practitioners (and friends and family) as being “too young”.

• Autistic people may not be knowledgeable about menopause at the time of perimenopausal onset, which can be frightening.

• Suicidality is higher in autistic midlife women than non-autistics.

• Doctors and healthcare practitioners may not understand enough about autism, menopause nor autistic communication to optimise healthcare for us.

• Autistic people may feel isolated and not have a network nor community with whom to discuss issues around their menopausal transition.

• Autistic people may struggle to access adequate menopausal healthcare due to autism-specific communication differences, executive functioning challenges etc. as well as overcoming barriers in systemic health system disparities.

• Prior mental health conditions and incidences of hormonal depression (PMS, PMDD, postnatal depression etc.) is a risk factor for menopausal depression.

Currently, there is very little out there on the topic of autistic perimenopause. (Everything I have found so far is compiled here.)

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This is why I am so excited to be endeavouring on this new feature for all my readers and subscribers!

I will be interviewing people who are either in autistic perimenopause or are post-menopausal, using a questions and answers (Q&A) format, and sharing each person’s responses in a new post. These posts will be shared by email to all my subscribers, and will also be compiled in one place up in the navigation bar above (on the Substack website and app) called ‘Auti Peri Q&A’.

I already have a number of wonderful fellow autistics who are keen to share their own autistic menopause transition reflections with you!

My aim is to elevate voices of autistic perimenopause for a growing audience, so please do share this series with others.

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Whilst I have already been in contact with some academic experts on the topic, I know that disseminating evidence-based academic research findings from a top-down approach is slow to reach public awareness. They are all working so hard, and I think we can support and contribute to this work too.

This is urgent.

Autistic aging is a chronically underfunded and under researched area, yet it affects all of us. There is no model for us to follow, nor strategies to support our health and longevity.

We already know from research that the rate of suicide is higher for autistic midlife people transitioning through menopause compared to the non-autistic population.

We have no time to waste in sharing our experiences, and getting the message across that perimenopause and hormonal fluctuations can affect autistic people in a more extreme and potentially harmful way than the non-autistic population. Whilst also showing that this isn’t the case for all autistic people.

I want this feature to be inclusive of all races and genders of people who experience the menopausal transition. White cisgender women dominate the narrative, so if you or someone you know from a minority demographic group would like to participate in The Auti Peri Q&A Series, please reach out to me.

I aim to diversify the message and be representative of all autistic peri/menopausal people.

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That ⬆️ was wordier than intended, so for those of us who are visual processors and/or skimreaders, here is a summary of my intentions and purpose in starting the new Auti Peri Q&A Series:

• Individual anecdotal narratives will elevate the autistic community as a whole.

• Highlight and normalise temporary regressions as part of many people’s autistic menopausal transition.

• Validate autistic menopausal transition as different from non-autistic.

• Informally support public health preparedness for autistic aging.

• Highlight systemic health disparities in autistic perimenopause.

• Improve awareness of autism and menopause as separate entities, and autistic menopause as a whole.

• Empower our unified voice.

• Compile a bank of voices for newly diagnosed autistic to anticipate the aging process through the lens of auti peri.

• Build our community up through our neurokindred life experiences.

• Raise self-advocacy as a community effort, not just an individualised responsibility.

• Share our wisdom.

• Contribute meaningfully and anecdotally to the growing body of work and research into auti peri.

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  These are the questions in The Auti Peri Q&A Series:

  1) What does “autistic perimenopause” mean to you?

  2) When did your autistic perimenopause symptoms start and what were/are they?

  3) What happened if/when you presented with autistic perimenopause to a healthcare professional?

  4) What has your treatment protocol been in managing your autistic perimenopause?

  5) How has your everyday life been impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, relationships etc.)?

  6) Are there things that make or have made your menopause transition especially difficult for you as an autistic person? If so, what kinds of things?

  7) Are there things that could make or could have made your menopause transition easier for you as an autistic person? If so, what kinds of things?

  8) What supports, resources and services are available to people experiencing autistic perimenopause where you live?

  9) What kinds of services, resources or supports would you find most helpful?

  10) What is the easiest way for you to access information about autistic menopause?

  11) What would you wish for all people to know about autistic perimenopause?

  12) Is there anything else you’d like to share regarding your autistic experiences of menopause?

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  Please get in touch with me if you would like to feature in this new series! Also look out for the posts in your email inbox. Thanks for giving your time and attention to this important and under researched topic. Together, we can make a difference towards enhancing the quality of life for our aging autistic neurokin.

  

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  Fun fact: The Autistic Perimenopause: A Temporary Regression is fuelled by caffeine. If you would like to buy me a coffee, the button above will take you to my page. Thank you! ☕️

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