Many women report that menopause was the time when their autism became much more pronounced or even a problem in so far as they were attempting to continue the status quo of their largely “adaptive” life as before yet that ability to mask and appear typical suddenly flew out of the window. The descriptor of menopause as “the time when my autism broke” derives from a study on the topic of autistic women and menopause published in 2020, full details below.
Additionally, for many women (a storyline I keep hearing in articles and podcasts) menopause or perimenopause was the time when they first realised that they are probably autistic and then went on to seek diagnosis or did all the necessary research and self-enquiry to diagnose themselves (self-diagnosis is, by the way, considered to be perfectly valid).
This was certainly the case for me, as my regulars will know. Though I look back and all-too-clearly see how I have indeed been autistic all my life, it was during this middle phase of my life that my mask, as it were, cracked and revealed this autism fully, not only to others but to myself so there was no more denying. Within 2 years of menopause, at 51, I had self-diagnosed myself, however the signs had been building steadily for at least the previous 5 to 10 years, prior to which I had no idea. Years of adaptive behaviours adopted to “get by” in the world fell apart so swiftly and monumentally, during this hormone-challenged phase, that I was faced with no other alternative but to accept my own diagnosis and get on with the business of exploring what being autistic really meant for me.
Though this phenomenon is alluded to a great deal on the various podcasts I follow, researched data about how menopause actually impacts autistic people is very thin on the ground so, when I happened upon this study, “‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause” (Rachel L Moseley, Tanya Druce, Julie M Turner-Cobb) I, of course, pounced on it. Since not one single study exists on the subject of menopause in autism, the report is as a result of an online discussion (focus group) consisting of seven autistic women. It reports “Autism-related difficulties (including sensory sensitivity, socializing with others and communicating needs) were reported to worsen during the menopause, often so dramatically that some participants suggested they found it impossible to continue to mask their struggles”. It then continues “Participants also reported having extreme meltdowns, experiencing anxiety and depression, and feeling suicidal”.
It seems to be, from everything I have learned directly and otherwise, that menopause amplifies autistic presentation. I would also say, from my own experience, any subliminal “bothers” such as acute sensory issues that I had (rather remarkably in hindsight) managed to put up with or drown out until then became so amplified for me during perimenopause and onwards that there was no ignoring them any more. If clothing or certain lighting conditions hurt, they HURT and I have to get out of them, immediately…decorous or not.
This mirrors an account shared in the an article on the website of Theresa Regan PhD (author of Understanding Autism in Adults and Ageing Adults) which addresses the challenge of autism in the ageing population. In the article “If You’ve Experienced Worsening of the Autistic Experience During Menopause, You are Not Alone!” a woman is described as being a “basket case” during her more frequent meltdowns during menopause and even stripping down to her underwear at work.
Communication difficulties also seem to worsen significantly during this life stage, which has an inevitable impact on work, family life and of course social functioning in all its guises. Again, I vehemently agree with this and can report that I have had to adopt strict parameters regarding what kind of activities I am prepared to engage in these days. For instance, the kind of social engagements I took part in a decade or more ago are quite impossible to imagine myself ever rekindling as I now am since I wouldn’t last very long at all before meltdown or shutdown occurred or I was sent into such a high state of overwhelm and overstimulation that it would take me days or even weeks to recover. The very idea of equating many of those things with “enjoyment” or even “necessity” as I once used to try to do seems utterly out of the question now that I am so much more realistic about personal preferences and needs; in fact, my needs, in particular, speak so loudly these days that they cannot be soft-soaped into acquiescence in the name of seeming more typical than I really am.
Sleep is another area that can take a major hit during menopause, for all women, but when the additional tiredness from night after night or inadequate sleep exacerbates cognitive struggles that are already being amplified, the effect can be more detrimental by far. This has an inevitable side effect of increased stress and emotional reactivity, all of which exacerbates the autistic experience of life.
The plus point of menopause is that it can force a midlife autistic woman to reappraise what she really wants and needs and to stand by that, to advocate for herself and to claim the right to choose that, for so many decades, fell by the wayside in an attempt to blend in and not inconvenience others.
Its not all negatives, as I have discovered for myself. In many ways, I honestly feel empowered by the knowledge that I am autistic where I was once so handicapped by my lack of awareness as to why I felt so different to other people and found so many things such a struggle. Coming to realise that autism is not a deficit but a difference has been the most wonderful discovery of my life and it is only in the context of being met by inappropriate expectations and exposures in a world not designed for autistic people that I continue to struggle. In fact, it has been reported by many women that coming to the realisation they are autistic has really helped them to navigate this period of their life, and I would concur wholeheartedly.
In fact, though the woman quoted in the report states that her “autism broke” I would say that it’s more accurate to say that my neuroptypicality broke (or at least my ability to pretend I was neurotypical, which I once had down to a fine art…but no more). There can be a great sense of relief and release from this, as the ability or even the desire to pretend any more falls by the wayside. It’s also a straightforward matter of spoons…all that masking and assimilating takes so much energy. Though I may have seemed like I was coping pretty well for a long time, no one could ever see how hard my legs were always working under the surface of the water; how much hypervigilance and self-scrutiny it took in every social situation, always looking for clues as to how I was being responded to, making every effort to adapt my innate behaviours and way of processing into neurotypical mode so people would “get” me and not find me too blunt or weird or outspoken. These days I lack the “spoons” to do all that and my energy has to be preserved to put elsewhere in my life.
Hearing other women speak so eloquently about all the positives of diagnosis and the possibility of owning your autism in the second half of life can be fuel for the fire of a life more authentically lived. What I find in such accounts is so much to be celebrated about embracing one’s own autism, at the same time as the chance to get real about some very stark difficulties as the declining ability to cope with, mask for or adapt to a neurotypical world begins to take effect. The effect can be to make you more outspoken and thus inclined to share opinions and experiences with other autistic women who share similar experiences to you; all of which has got to have a positive and empowering effect on the way we continue to sculpt a more inclusive world.
For instance, coping with certain things that can’t automatically be tailored to our preferences, such as sensory stimuli, remains a problem that needs to be addressed by the dissemination of far more autism awareness out into the world at large, so that it becomes more widely known that autistic people can’t be expected to put up with what our fellow shoppers, diners or residents put up with in an excessively overstimulating world. This, by the way, has to also apply to places such as clinics, care homes and indeed anywhere that autistic people are likely to have to spend more of their time as they age.
The issue of communicating with medical professionals just at the time of life when you are most likely to need them but when the struggle to articulate what is happening in your body gets amplified is yet another issue that needs to be addressed if an ageing autistic population are to be met as equals and with compassion in the world. This calls for far more education of medical (and other) personnel as to the sensory, cognitive and other challenges of autistic adults, throughout all stages of their lives.
All very much food for thought.
2 thoughts on “Menopause…the time when “my autism broke””
Definitely true for me. Perimenopause was the roughest time of my life. It wasn’t until several years later that I realized I’m autistic. I’ve reworked my life pretty thoroughly, so it fits better now, and I just can’t imagine trying to do everything I did before!
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I wouldn’t want to either…it wouldn’t fit who I now know I am and is such a relief to get back to being me for the first time since early childhood. What a detour NT adult life takes us on!