A little validation goes a long way

Content warning: In this post I mention my own suicidal thoughts caused by autistic perimenopause. Please seek support for yourself immediately if you are experiencing extreme mental health challenges

Too many undiagnosed/late diagnosed autistic women are suffering psychologically and physically from the insidious nature of perimenopause, to a much more severe and debilitating extent than the non-neurodivergent population during midlife. Perimenopause affects both brain and body, with hormone fluctuations causing functionality of our brains and bodies to also fluctuate. Unlike our previous years of cyclical menstruation, things can get really unpredictable, surprising and sometimes scary.

It is my intention to create a safe online space for us all to commune, since nobody in my analogue world will agree to setting up a commune on my behalf, where autistic perimenopausal women can live the zero demand lifestyle we require to flourish. For the record, I am too tired to do it myself. Sigh. I want to acknowledge here that launching my Substack and creating posts has unhelpfully and unavoidably been an enormous trigger for my PDA (pervasive drive for autonomy/pathological demand avoidance) in many respects. I have been scared of not doing things perfectly, worried about my characteristic inconsistencies, and even being able to remember that writing posts is now one of my priorities.

Menopause has become part of our everyday awareness, which is a brilliant development societally. Much less is known about the menopausal transition in neurodevelopmentally atypical people. We are highly sensitive individuals, with a lifetime of medical mismanagement and psychological misunderstanding. We can be more socially isolated, so may not have a consistent friendship group with whom we can share our deepest fears and personal journeys. Life has often been challenging, and many of us have lost friendships that we have invested our time, kindness and energy into, yet not felt truly understood and supported in return.

Overall, many people do not wish to talk openly about intimate issues, yet an enormous strength of neurodivergent people is our ability to discuss social taboos, amongst ourselves at least, and our strong sense of social justice to fight for others. But who is fighting for us?

The unfortunate truth is that many autistic women in perimenopause do not know enough about this transition, do not have access to a medical team who understand our communication preferences, and we are so burnt out and exhausted that the demands on our energy far outweigh our capacity to function.

Our finely sculpted masks become heavier with the weight of sensory overload from night sweats, aching joints and often heavier, unpredictable periods; caring duties for family members young and old; and living unfulfilled lives that quell the very essence that make us the alternative, unconventional legends that we truly are.

As we lose control of our moods and masking skills, we rescuers and people pleasers become the ones in need of rescuing. Unfortunately, others may not step into this role to give us the care we need and deserve, and may instead become resentful of us showing our vulnerabilities.

Grief, shame, despair, anxiety, fear, desolation, depression and other undesirable sensations (as deep empaths, we often feel our own and others’ emotions to an excruciating extent) can all become overwhelming, with no sense of inner hope nor friendship group to unburden ourselves within. Suicidality increases at this time, but it should not feel like our only option.

I want to validate the immense impact of autistic perimenopause as a common experience for autistics during this period (excuse the pun) of extreme hormonal shifts. We should know to look out for these aspects in ourselves and others, and talk about it. We autistics are not known for our love of change, yet we all have to experience this life event commonly known as ‘The Change’. And if it isn’t directly impacting on you, we all know someone that might be directly affected.

I want this Substack to provide information, to build community, and to validate the experiences of those who can see themselves in my own story, and, most importantly, to save the lives and dignity of distressed menopausal autistics.

We have a need as a community to anticipate the potential negative effects in order to put support in place to buffer us during the lows.

For me, things got really bad really quickly, culminating in my late diagnoses of autism, ADHD and chronic anxiety. My hyper sensitivity to extreme fluctuations of hormones led to my mood being dependent on my hormone levels at any given time. Unpredictable periods meant I no longer had my “good week” to look forward to, where I would feel on top of the world.

My ADHD brain fog became a total lack of cognition, my executive functioning was close to non-existent, and my mood was reliably an uncontrollable rage and a low that was closer to a feeling of utter desolation than anything I had experienced before. And I was no stranger to depression.

I then experienced suicidal and intrusive thoughts, and with my slow processing time, lagging interoception skills and autistic communication style, all making it harder to report this to my doctor in a timely manner. It was 24 hours before I realised I probably ought to tell my husband that I had considered driving my car into a wall so I could stop feeling this way, and about my frequent intrusive thoughts about parking my car on train tracks and waiting for a train to come at speed and put me out of my misery. Such thoughts are common, but they should not be the norm.

I was in crisis, it was affecting my entire family, but I had read enough on the topic and geeked out on podcasts to know that this was not a permanent change to my life. I had some hope that this all encompassing regression to my sense of self was temporary. At times I could even reframe it as a time of personal growth, like a metamorphosis as I transform into the Sam I was always supposed to be. From this mindset shift, it was possible to see this as a part of my journey. I did not feel disillusioned enough to trust this to be a “natural” journey that I could take alone. Indeed I have welcomed all the medical and hormonal replacement therapies possible in the forms of creams, pills, patches, plus even an intrauterine device I will gladly overshare about in a future post. For me, they have been like life support, to buffer me through the extreme highs and lows of hormonal fluctuations, and to enable me to function again with my dignity intact.

The use of ‘Temporary’ in my Substack title is a deliberate reminder to us all that my regression is only a part of the transition. I am still in perimenopause and I cannot predict the timeline, which I find very unnerving. Yet I am assured that once I am post-menopausal (one full year to the date of your last period), my hormones should begin to be on more of an even keel, and I can settle into a new (and I am told, better!) life phase as my brain and body adjust.

I would love it if you could share this journey with me, and join my virtual commune by subscribing to ‘The Autistic Perimenopause: A Temporary Regression’.

Please feel free to share in the comments:

• How has perimenopause affected your functioning so far?

• How low did you go?

• Are you post-menopausal, and can tell us how you experienced and survived your own hormonal shifts?

• Have you had a gentler transition than me, and can you give us all some hope that I am the exception rather than the rule?

I would welcome any comments about how any of the issues I have shared here have shown themselves in your life. I do not have all the answers or solutions, but I look forward to sharing what has worked for me around my treatment plans, support packages and tech hacks to enhance my executive functioning while my brain is offline. We should not have to suffer alone or in silence.