It’s 3am. Everything around me—bed sheet, duvet cover, tank top—is drenched. As though someone pitched a glass of water at me without warning. The sweat quickly turns cold and clammy on my skin. I get up and race to change. It’s a scene straight out of a comedy sketch: Flustered woman fans the flames of a hot flash. Except this is no laughing matter. I’m definitely not laughing.
My periods are so heavy and painful, I can barely leave the house for the first few days. Every night, no matter how tired I am, I lie awake for hours. During the day, drained and exhausted, I can’t focus. I walk in and out of rooms empty-handed. I lose the words for everyday items. The other day I saw a critter outside and couldn’t for the life of me remember its name. (It was a raccoon, people.) I fear I’m going crazy or worse, that I’m in the early stages of dementia. I set reminders and write lists and still manage to forget things. I drop all the balls, all the time. I cry for no good reason, and rage at everyone and no one in particular. My family makes for easy targets.
What I’m experiencing is completely normal, apparently. The nascent phase of menopause, known as perimenopause. Until recently, there was scant information available about what to expect when you’re experiencing “The Change.” Even in the privacy of doctors’ offices, talk of menopause was taboo. You weren’t expected to complain. You were expected to grin and bear it, to weather the long and varied list of symptoms that marked the end of your reproductive years.
Older women seldom sat their younger sisters down to offer support and knowledge. My mom was certainly no help thanks to a fibroid that forced a full hysterectomy at age 40. And her own mother, my nan, never breathed a word about periods, let alone about their cessation. Mercifully, the radio silence is breaking. People are talking more openly about menopause now thanks to the likes of Dr. Jen Gunter and celebrities like Gwyneth Paltrow, Drew Barrymore, even former First Lady Michelle Obama sharing their experiences.
But there is still one facet of menopause that nobody’s talking about—and that’s how it affects women like me. In many ways, perimenopause creates a “perfect storm” of symptoms that women with conditions like autism and ADHD are seldom equipped to deal with. On average, neurodivergent women report more severe mood complaints, such as anxiety and depression, as well as more acute sensory and bodily symptoms than neurotypical women.
When we describe the transition as tumultuous, even catastrophic, it’s not hyperbole. Research links perimenopause to a marked deterioration in mental wellbeing, daily functioning and coping skills. For many of us, burnout is a precursor to learning we are autistic. Others experience a regression that is both frightening and unexpected.
Indeed, many of us only learn we’re autistic or ADHD later in life, when hormonal shifts make previous functioning levels impossible. I only discovered my autism at 44, almost 10 years after my son’s diagnosis. I was able to “mask” and push through the demands of every day. Until I couldn’t.
Since perimenopause, I have felt “more autistic” and often struggled to cope. My depression reared its ugly head, forcing me back on medication—something I vowed never to do. It’s no coincidence that women with more severe menopausal symptoms also report higher depression scores and higher autistic traits.
Then there are the cognitive effects. The brain fog is legendary. Trouble with memory, focus, organization and decision-making are common symptoms of menopause. In women with autism and ADHD, our innate challenges are exacerbated by hormonal changes, with 62% of women surprised at the extent of lapses in memory and concentration. This decline in functioning can compromise performance, leading to real fears about job security and economic stability.
Perimenopause has only intensified my sensory sensitivities. The sensation of sweat on my skin after a flash is enough to trigger a panic attack or meltdown. I’m more sensitive than ever to both light and sound, wearing sunglasses on overcast days and ear defenders in public spaces. The only upshot is that I’m now at an age where I don’t give a rat’s ass how I look.
If we go out to dinner, my husband will request a quiet table. It doesn’t always help. It’s like having the volume cranked up with no way to turn it down. I can’t focus on the conversation. I can’t enjoy my meal. Sometimes I can power through to the main course, only to fall apart before dessert. My husband will clock my pained expression across the table and register that we need to leave now. Places and activities I previously tolerated are now off limits. My small life has become even smaller. It’s not a choice. I’m not trying to be difficult or demanding.
It could be that our hormonal baseline varies from that of neurotypical women, with neurotransmitters dopamine and serotonin particularly impacted by fluctuating estrogen levels. This would explain the knock-on effect on our mood, sensory processing, and overall wellbeing. However, until there is a large-scale study into our distinct biochemical profile, we won’t have a clear picture of our needs, let alone adequate support.
The fact is, the standard menopause advice simply does not apply to us. Almost 96% of women in one study did not feel that healthcare providers understood how autism affected their menopause. Co-occurring chronic conditions such as fibromyalgia, Ehlers-Danlos Syndrome, and gut issues common in autistic women are further aggravated during menopause, leading to fatigue, insomnia and pain flares that greatly diminish our quality of life.
Despite research confirming that we suffer from more severe menopause complaints, we’re often dismissed by medical professionals or accused of exaggerating our symptoms. Interventions targeting sensory regulation, routine and environmental adjustments could be beneficial. Above all, though, we need validation. We need practitioners who won’t minimize our concerns. We should not have to fight for things like hormone replacement therapy or hysterectomies.
These conversations need to happen long before a woman reaches midlife. When we know what to expect, autistic people tend to thrive and feel less anxiety and distress. Sadly, 54% of women who entered menopause without knowing they were autistic reported worse symptoms.
If it wasn’t for reading about other neurodivergent women, I’d still be in the dark. I might have felt even more alone and desperate in the face of such debilitating symptoms. ND women tend to lack the kind of close friendships that help other women, so being able to swap stories and share tips on managing symptoms and communicating to doctors could make all the difference. We don’t deserve to suffer in silence.
Any neurodivergent menopause resources you swear by? I recommend Divergent Menopause. The lovely Sam Galloway (she/her) 💕 tells it to you straight. Please share - we can all learn from each other.
Self-care looks different for autistic folks
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March 1, 2023
Just because I wrote these words while sitting on a beach doesn’t mean I’m good at self-care. I’ll be the first to throw up my hand and admit that, beach notwithstandin…
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