Hi everyone, Thanks for being here with me at The Autistic Perimenopause: Temporary Regression! I am delighted to be making some small regains in my energy, capacity and functioning levels that have been spiralling, regressing and lagging during my ongoing autistic perimenopause. I am fortunate to have enough supports in place right now, and have built my family’s life around my late-identified neurodivergence. They aren’t always happy about this, but I refuse to believe the “normal” way of life is best for everyone. Initiating these lifestyle differences has required extensive research, self-compassion and self-advocacy on my part, to the extent where this is a spin (special interest) of mine. Thus the topic of many an info dump! Of course, it also requires support of friends, family, our close community and the wider network in which we live. None of us can do it alone. That’s all got me wondering how you are getting along through autistic perimenopause? Temporary regressions are to be expected, although not everyone is equally impacted by them. Just as in autism, I believe that perimenopause is a spectrum, and a dynamic one at that. Our mood, needs and energy may fluctuate alongside our fluctuating hormone levels. When any of these are low, our support needs may be high(er). It is just how it is. No guilt. No shame. Frustratingly, when we find ourselves at our lowest capacity, it is often the hardest time to find appropriate supports. People who have seen us as “highly” functioning until now may not believe the regressions that we are experiencing, and may not see that we have increased support needs. Our lifelong social masking can backfire on us in this way, which is doubly difficult for us. Disclosing a late formal or self-diagnosis is not safe for all, nor in every environment we find ourselves in. There is no level playing field in neurodivergence. Internalised ableism can be prohibitive in accepting and recognising our own support needs. For those of us who are neurodivergent and/or chronically ill without obvious outward signs of disability, our invisible disabilities will go unseen. Schemes such as the Sunflower lanyard “encourage inclusivity, acceptance and understanding”. Why did we choose a sunflower? Without a visual cue, it can be difficult for others to identify, acknowledge, or understand the daily barriers faced by people living with an invisible disability. We searched for a discreet sign that is clearly visible from a distance as well as being distinctive, joyful, and dynamic. We chose a sunflower as it suggests happiness, positivity, strength as well as growth and confidence and is universally known. I have benefited from wearing my sunflower lanyard in airports, and this was vital when travelling from Aotearoa NZ to the UK and back last year when my Dad was dying. Grief stricken and sleepless, I would never have made the connecting flights without a member of ground staff supporting the flight and gate transitions, losing track of time and space in overwhelming crowded airports. Some airports provide additional information to support people who may be overwhelmed with visual guides, such as this photographic visual guide/social story for Wellington Airport. It is contentious though that we should need to “out” ourselves as autistic or having an invisible disability, condition and/or chronic illness, and be seen as “other” to be worthy of support. A widespread culture of collective care and mutual support would benefit everyone, but that is a dilemma for another day… For those of us with autistic children, we are fully aware and accepting of their dynamic individual needs. It is just how we function (or don’t function), depending on anxiety and environmental issues, amongst a multitude of other things. A child’s autistic meltdown is more acceptable than an adult who is melting down, but autistic children grow up to be autistic adults, and so this should be expected and accepted. I believe that with a late diagnosis/identification of autism we should also be given a prescription for self-compassion. If you feel you need permission to acknowledge your support needs in autistic perimenopause and beyond, then please take it now from me. I know too many of us have spent our lives so far masking our differences and lagging skills, and that is exhausting. In perimenopause, the energy we afforded masking in our previous decades will fluctuate, sometimes diminishing all together. It is okay - that is what is supposed to happen. So let’s all agree that a diagnosis of autism comes with associated support needs that do not need functioning labels of “high”, “low” or in between, since our individual responses to varied stimuli in our dynamic neurodifferences are what cause the immediate and fluctuating support needs. Not a predetermined level of ASD. Even if this was given to you alongside your diagnosis report, you don’t need to think about yourself in these rigid terms. What about you? Do you get enough support? Do you know what your support needs are? Do you have a safe community/network to help you meet your support needs? Please let us all know using this basic quick poll: I would love to know more about you and to share your story! I have been so honoured to already share the experiences of so many autistic people who are experiencing the menopause transition and beyond. There are a couple more Auti Peri Q&As yet to be released, and I am so keen to share your story and experiences of autistic perimenopause. Yes, you! If you would like to be featured as part of this series, please message me or reply to any of my emails. I’d love to share your story! Here is a summary of my intentions and purpose in running the ongoing 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. 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? All I need in addition to your responses to these questions are a couple of sentences (or as much as you like) about yourself, your location, your personal pronouns and a photo that you would like to share. If you feel uncomfortable with sharing any of these, we can leave them out and/or use a false name. I will format all your responses into a post that you can approve before it gets scheduled for publishing. They get sent out to my email list which is currently in the 860s and is chock full of amazing people who will be so grateful to hear your lived experience. This really is emotive and vital advocacy work that I cannot do alone. I would really appreciate your support with this! 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. I’m so glad you are here. If you feel seen and heard by my writing, please consider upgrading to a paid subscription. Paid subscribers support continuous publishing of lived experiences of autistic perimenopause here at The Autistic Perimenopause: A Temporary Regression 💕 Get full access to The Autistic Perimenopause: A Temporary Regression at samgallowayaudhd.substack.com/subscribe
