Hi, I’m Sam (she/her). 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 am the host of The Auti Peri Q&A Series! In this series, I host a Q&A interview with a fellow autistic person about their experience of the menopause transition.
Everyone’s experience of the autistic menopausal transition is different. I aim to elevate the voices, lived experiences and reflections of autistic people’s menopausal transition.
Autistic perimenopause is a highly individual, dynamic and sometimes prolonged life stage caused by reproductive hormonal fluctuations. As autistics can be highly sensitive to bodily and environmental, we may experience fluctuations as physical, psychological and cognitive symptoms.
Academic research into auti peri is in it’s early stages, yet it is a matter or urgency that we bust the social taboo and get used to talking about this.
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! ☕️
Today’s guest is Justine Field (she/her/they/them).
Justine is a writer, mediator, project-magnet and recovering lawyer powered by curiosity and the joy of unlearning. She strives to make the inner world of late-identified neurodivergence visible and a force for change and is currently working on a book about the workplace.
It’s a particular experience of menopause shaped by the intersection with autism, among other things – for me, it’s closely intertwined with ADHD. Being autistic has magnified aspects of perimenopause and vice versa and I’ve experienced heightened sensory sensitivities, and greater challenges with emotional regulation and executive function.
When did your autistic perimenopause symptoms start and what were/are they?
The first sign perimenopause was on the horizon was increasingly irregular and heavy periods, probably around five years ago. It wasn’t until two-three years ago that I started experiencing hot flushes that signalled the “official” start of perimenopause. It was strangely validating because it was so tangible - there was no mistaking it.
But with the benefit of hindsight and an autism diagnosis, it’s clear that autistic perimenopause was afoot long before then, possibly seven-eight years ago, in my mid-40s. I was definitely in the throes of emotional and cognitive symptoms that I didn’t recognise as part of perimenopause at the time. I seemed to be carrying an inexhaustible supply of rage that came from nowhere and I had more frequent meltdowns which I was less able to internalise.
I now understand that I had reached the limit of what I could absorb but wasn’t yet able to verbalise it. I was burnt out and no longer had the energy or inclination to mask. A mid-life collision of hormonal change and a bunch of stressful life events on top of decades of chronic stress broke down the coping mechanisms that had propped me up throughout my life. I didn’t know I was autistic when I first experienced menopause but it was instrumental in my diagnosis at 48, followed by ADHD three years later.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
It would have been a couple of years after my autism diagnosis that I first mentioned perimenopause to my GP. At the time, I wasn’t aware of autistic perimenopause as a distinct phenomenon although I do remember talking about the impact on my sensory sensitivities.
At the same time, I was also becoming more aware of the intersection of perimenopause and ADHD which I discussed with the GP who referred me to the psychiatrist who diagnosed me. Both were open to listening to my experiences and I felt validated and supported. Psychologists I’ve seen seem to have gaps in their knowledge of how perimenopause impacts on mental health, especially when you factor in neurodivergence.
I’ve probably been more circumspect with other healthcare professionals where the benefit of disclosure is marginal. It’s not worth the risk of stigmatisation when I don’t know where their knowledge of neurodivergence sits.
What has your treatment protocol been in managing your autistic perimenopause?
I’m lucky to have had a great GP for many years who is across my history, including autism and ADHD diagnoses and has a holistic approach to managing my healthcare. She is well informed about perimenopause/menopause treatment which she sees as integral to her practice rather than an afterthought. I started HRT treatment about a year ago and it’s taken some trial and error to find what works for me. It’s also been complicated by having a perimenopause/menopause trajectory that has been far from linear and very unpredictable. A one-size-fits-all approach to treatment would not have worked for me.
My treatment is structured around six-monthly injections for low-bone density and routine blood tests. ADHD stimulant medication has been integral to managing the impact of fluctuating oestrogen levels on dopamine and has made a big difference to my emotional regulation and executive function. I’ve also become pretty diligent about self-care which includes regular lap-swimming, meditation, healthy eating, minimal alcohol and as much sleep as I can get. Regular opportunities for solitude and reflection and time in nature are also an important part of my self-care practice.
How has your everyday life been impacted by autistic perimenopause?
I reached a point in my 40s when I could no longer sustain the pace of life I’d been living. I was finding it harder to push through and when I did get a reprieve, I was a bundle of nervous energy and unable to relax. It was only when I was diagnosed autistic that I realised I was not only in burnout but had been experiencing cycles of burnout for much of my life. I also realised that it wasn’t just a matter of recovering from it but I needed to make fundamental changes to my life.
The biggest change was resigning from a job in an organisation I had worked in for 18 years. Once I understood how hard I’d been working to adapt to environments that weren’t suited to my brain, I stopped feeling like a failure and congratulated myself for surviving. I still grapple with internalised ableism and the pressure to be productive but finding a way of working that aligns with my values, strengths and needs is winning out. I’m now self-employed which gives me autonomy, flexibility and space for other things in my life.
Learning that my energy is a finite resource was a revelation and I’ve become a lot more discerning about who and what I prioritise. I used to feel shame in spending time alone but now I embrace solitude as an opportunity to connect to my inner life, tap into my creativity and explore new interests. I no long brush aside my feelings as an inconvenience but pay attention to what they are telling me.
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?
My sensory sensitivities have intensified, particularly when it comes to noise. It’s hard to know how much of this is menopause-related and how much is due to a nervous system worn down by living in the world as an undiagnosed autistic person. I can’t tolerate certain environments any more and I’ve had to develop self-advocacy skills to ask for what I need and hold firm on boundaries. It’s a big shift from a lifetime of masking, people-pleasing and maintaining a façade of coping.
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?
For a start, I wish I’d seen it coming. Knowledge about perimenopause and menopause well ahead of time would have helped. I could have made adjustments to my life earlier rather than pushing through. My generation is the first to have access to information about perimenopause and menopause but we’re learning in real time. I hope this kind of information is available to future generations as part of their general education and that this will filter into the broader community.
It would also have helped to know more about the intersection of menopause with autism and ADHD and the impact on mental health. Quality, research-based information should also be available to women and AFAB people as part of a package of post-diagnosis support.
There needs to be more acknowledgement of the support needs of autistic people across the life span; that the experience of autism is not static and there are times in life where a greater level of support may be needed. It’s not all about early intervention for children or school-leavers transitioning into employment.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
Apart from the individualised support from my GP, I have found minimal supports, resources or services directed to my experience of autistic perimenopause in my area. I’ve been able to access webinars delivered by autistic/neurodivergent led organisations and these can be useful for providing peer validation and links to resources. Generalist perimenopause resources rarely address neurodivergence and tend to be based on a heteronormative narrative which further alienates me as a queer woman.
What kinds of services, resources or supports would you find most helpful?
I would say the most valuable source of supports, resources and services has been online content created by neurodivergent women. Lived experience accounts have been incredibly valuable in helping me understand and validate my experience and giving me the language to talk about it.
Quality research is important but we also need people to interpret, communicate and amplify the message to a broader audience. The Autistic Perimenopause is an excellent resource that does all these things and I think what Sam is doing is brilliant.
Ongoing, neuroaffirming mental health support is crucial to addressing the cumulative trauma from living as an undiagnosed AuDHD person but it’s hard to access and unaffordable for most. There is an urgent need for mental health support for women around the perimenopausal stage and even more so for neurodivergent women given the higher suicide rates for both these groups. This doesn’t necessarily require clinical psychologists but community based peer support, mentoring and coaching can be very valuable when grounded in lived experience. It’s something I’d love to be involved in developing.
What is the easiest way for you to access information about autistic menopause?
I like webinars but tend to listen to recordings rather than live streaming to fit in with my routine and also because logging into a live webinar can make me feel a bit exposed if I’m not up to it. I like podcasts because I can listen to them when I’m driving and doing household stuff. I also like to read lived experience accounts whether shortform posts on online platforms or longform such as memoirs. I appreciate quality research but rarely have the time to read it let alone process it properly so I’m really grateful to anyone who puts time and effort into making it more accessible.
What would you wish for all people to know about autistic perimenopause?
I would like people to know that the experience of perimenopause is not uniform and can present additional challenges for autistic people. There also needs to be more awareness of the impact on mental health and emotional wellbeing, particularly as it intersects with other stressors associated with mid-life. Instead of dismissing the impact of perimenopause because it’s natural and all women go through it, there needs to be space for a diversity of experience.
I believe that if there was a more nuanced understanding of perimenopause in the broader community, some of the judgement and scorn directed towards middle-aged women asserting their needs might fall away. It comes back to an overarching need for people to examine their cognitive biases and be more open to other ways of being.
Is there anything else you’d like to share regarding your autistic experiences of menopause?
For me, menopause has been a transformative time because it’s coincided with discovering my neurodivergence. It was the start of an unravelling in which I have had to reckon with everything I had believed to be true about myself and my life. I’ve learned about myself at a greater depth than ever before, confronting the stories I have told and replacing them with new ones. I would never pretend it’s smooth sailing - it’s probably the most challenging time of my life. The work is hard but the rewards are rich.
It’s taken until my 50s to accept who I am and finally start to let go of the rejection, exclusion, shame and internalised blame of the preceding decades. But I also feel as though this is my time to shine and become the person I’m meant to be. I’m now driven by my own values, priorities and desires rather than measuring myself against neurotypical, patriarchal and capitalist imperatives.
Living in the margins has given me a perspective that I don’t think a more conventional path would have given me and for that I am grateful.
I hope you have enjoyed this Q&A. If you would like to be featured as part of this series, please message me. I’d love to share your story!
