Data voids in autistic menopause research

Without empirical data, pseudoscience fills knowledge and information gaps, putting many already vulnerable lives at greater risk

Female autistics are a new phenomenon, so the classical research into stereotypically autistic cis white boys would have us all believe. Yet, there is a growing evidence base on the more nuanced female autistic presentation: our mental health, our support needs and communication preferences. The academic research specifically into the autistic menopausal transition is in its early stages, and available findings are slow to be disseminated. This is an ongoing critical research data void, requiring prioritised academic investigation since we already know that midlife autistic women are three times likely to die from suicide than non-autistics.

Photo by NASA on Unsplash

Dr Jen Gunter of The Vajenda recently wrote this post about the need to be aware of data voids when researching information online, particularly where our health is concerned:

“A data void exists when there is no or very little reliable information on a topic. Data voids are easy to find in so-called alternative health care because when a procedure isn’t recommended or is even downright ridiculous … people don’t write research papers on the subject, and hence, there are few, if any, legitimate news articles. This means there is nothing accurate, or at least very little, for people to find when they search.”

Until recently, there has been a lack, or void, of credible data and research evidence detailing the health/life span and reproductive, hormonal, physical and mental health of autistic women. We continue to lack evidence based support strategies, models for optimising our healthcare, and methods to promote and increase our mental health regarding our menopausal transition.

Looking into this topic via an internet search engine brings up varying results in the overlapping information between “autistic” and “perimenopause”, yet there are only a handful of studies that are academic in nature. There are also podcast episodes, blogposts, videos and anecdotal information, of which I would classify my own writing here at The Autistic Perimenopause: A Temporary Regression.

There are so many unknowns, not often discussed because “autism” and “menopause” are quite the social taboos. Until we have sufficient research data and conclusive evidence detailing out the ideal formula for late diagnosed autistics stages of unmasking and mental health elevation, there will always be spurious pseudoscientists attempting to fill the void. They will try and sell us their snake oils, their supplements and their diet plans. They will make claims that we can be free of our autistic traits, if only we would buy into their schemes and programmes.

As we come to our late diagnoses, trying to make sense of the shitstorm that often precedes a later-in-life diagnosis of autism, this leaves us vulnerable and exposed to believing almost anything we read online, whether it is backed by science or not.

The late diagnosed autistic women of today are The Lost Generation of Autism. We are the ones who flew under the radar, fell between the cracks, obscured ourselves from scrutiny by morphing into inauthentic versions of our true selves. When our masks slipped, our quirks and differences were attributed to character flaws. We have been subjected to intimidation, exploitation and humiliation, many of us relentlessly and for decades. Chronically misunderstood, isolated, and forever on the fringes of society.

Yet hardest of all, is the difficulty in understanding who we are, what our preferences and strengths are, and what makes us happy.

Our lives have been spent bracing ourselves against the harsh world and its overwhelming demands and stimulation. Our minds have been consumed second guessing our own intuition and pleasing others, doing whatever it takes to be accepted. Our masks are so convincing that even we do not know who we are without them, and trying to find out is truly frightening and overwhelming.

We need to be represented and supported through research that develops strategies that enable us to know how to process and progress in our unmasking. Conventional strategies and mainstream life do not provide us the psychological safety we need. So how can we unmask safely and with confidence? I wish I knew. I don’t think anyone really knows. Sure, there are great theories such as radical self-acceptance and “just being yourself”, but they don’t work out well in every social situation. If you do know, please tell us all in the comments, because I for one need all the help I can get right now.

In the absence of hard science, we need to discuss these issues with our neurokin, share the highs and the lows. Thank goodness for the community we have here on Substack. It can be so hard to reach out to others for advice, after decades of being unable to share our vulnerabilities. But when we reach out we can receive some excellent advice as well as feeling validated, reassured and supported.

Autistic women have a lifetime of medical gaslighting and medical misogny, but it is important that we discuss our needs with our doctors to get appropriate midlife medical treatment. If you feel there is something not quite right, and you notice it occurs in line with your menstrual cycle, and/or feels hormonal to you, trust your own instinct.

What so for the midlife autistics who are still unable to trust their gut instinct? Or don’t even feel their instincts, as a lifetime of cries for help have gone unheard and unmet. What about those of us with alexithymia, interoception challenges or cognitive information processing differences that make it harder to obtain, understand and/or rationalise information presented online? This is what makes the urgency all the greater, for research to be conducted, disseminated and become part of the autistic menopausal transition plan.

The findings from what is probably the main study on autistic perimenopause to date, published earlier in 2024 still only highlights the issues many autistics are facing in midlife. We still need to find best practice for optimising our health, or at least optimising our survival rates at this emotionally volatile time.

Key takeaways from ‘A Perfect Storm’ Autistic experiences of menopause and midlife:

• The importance of person-centred, autism-informed healthcare that considers intersectionality and accessibility needs. We encourage healthcare professionals to recognize autistic communication styles and the various symptoms of menopause, including those that are less widely discussed, and to be receptive to the fact that menopause may start earlier than is commonly expected.

• The impact of autism awareness on menopausal experience is a crucial research question, and one which will necessarily become easier to address as time goes on, and as more diverse populations are diagnosed in early life.

• Further research is needed to better compare autistic and non-autistic experiences of menopause and to contextualize particular socio-demographic impacts on experiences.

• Regardless of its limitations, this study draws attention to the similarities in menopausal experience across international contexts and adds to the growing evidence that menopause may present particular difficulties for autistic people, suggesting the need for greater attention to healthcare, knowledge, connection and support.

This research is a monumental early step in what needs to become a rapidly developing highway of data, for the sake of our own psychological, physical, emotional and mental health as autistic women navigating midlife.