Menopause and autism
"I feel autistic women are more likely to be described as ‘anxious’ and an autism diagnosis overlooked, since it can challenge gender stereotypes."
Dr Camilla Pang
I’m delighted to share a guest blog post on the theme of autism from a ‘meno-peer’, Dr Helen Douglas.
I’m autistic – a fact that wasn’t known to me until the age of 48. Since receiving the autism diagnosis, many of my struggles have started to make sense. I’m better able to cultivate some compassion towards myself as a result. However, at the time of my surgical menopause, aged 41, I had no awareness whatsoever of my neurodiversity. And the word ‘awareness’ is key there. One of my favourite quotes is “without awareness we have no choice” ~ Peter Levine.
Alongside my autism lie a variety of other conditions or vulnerabilities as I prefer to think of them. I had no idea why I found bright lights, strange smells or unpredictable noises so totally overwhelming, was due to sensory processing disorder (SPD). I have exceptionally acute hearing, and now make frequent use of noise-cancelling headphones. Certain patterns make my eyes hurt. And I know that sounds strange, it’s hard to explain. Likewise, I was not aware that the reason I could neither recognise nor understand my feelings was due to alexithymia.
If there is one word I’d use to sum up my experiences of autism, it would be ‘complex’. Therein lies the irony. Because, ‘complex’ is also the word I’d use to describe menopause. There’s a mantra in the neurodiverse world - if you’ve met one person with autism, you’ve met one person with autism. And again, I’ve come to appreciate that every single person will experience menopause differently. It’s a highly individualised experience.
Whilst menopause itself is in fact just one day, the process our bodies go through is a transition. It involves a whole heap of changes. As an autistic woman, I thrive on sameness and routine. Change & transitions are stressful, even necessary and well-signposted transitions. Whilst many people look forward to going on holiday, I find the disruption to routine so challenging that I prefer not to go away at all. I disliked the idea of changing my hormone replacement therapy (HRT) prescription because it meant change, despite the fact that it was in my best interests. Like I say, it’s complex.
A few things I wish others knew about autism and me -
I live with a constant background level of anxiety, and without doubt menopause significantly amped up the level. Emotional regulation is difficult, and I can shut down in response to overwhelming stress. What overwhelming stress looks like may be an unscheduled change to my timetable, having to use a different fork to eat lunch, or suddenly finding the furniture rearranged. It’s said girls and women on the spectrum typically internalise everything, until eventually they implode. We might self-harm, engage in risky behaviours, and/or use drugs/alcohol/food to try and help regulate our emotions and feelings. We may also use maladaptive coping strategies to help deal with positive emotions as well as the negative ones.
Any form of social interaction is typically anxiety provoking. I don’t like to answer the telephone, or the door. Emails and text messages are wonderful!
I can effectively process input from one ‘channel’ at a time. I can either listen to what you are saying, or I can take in visual clues. Just not both at once. Having an appointment-buddy to accompany me on important visits, such as those to my GP or the hospital, is helpful.
It’s best to avoid using idioms, metaphors or similes, they add an unnecessary layer of complexity to communications. I prefer to be told the facts in simple language.
Processing delays. Please don’t expect me to respond immediately. I will need time to think. That might be a few minutes, a few hours, or days. Patience is everything.
My neurodiversity means I don’t always pick up on social cues or conventions, I will misspeak, I can be overly blunt, rather awkward, and my brain often enters a holding-pattern at crucial moments. Combine those with the brain fog often present with menopause, and you can see why interacting with others can be challenging.
Please don’t do anything that draws attention to me or my differences. Yes, I know I am different. I’ve spent a lifetime feeling excluded and the odd one out.
The need to stim. Stimming refers to self-stimulatory, repetitive behaviours that often help with emotional self-regulation. I have a wee black felt dog called Stanley, who nestles in the palm of my hand. Stroking his velvety soft fabric is calming and allows me to self-regulate.
Predictability is my friend, and I can be inflexible in my thoughts and my approaches. Making decisions is hard. Don’t spring changes or surprises on me (good or bad). Knowing when to challenge me is key though, and I need one person in my life who listens to what I am not saying. That person will invariably be someone else on the spectrum, but not always, there are many wonderful allies out there. Sometimes a therapist can help. The trick is to seek one out before you hit crisis point. But I know that’s easier said than done for a variety of reasons.
I’ve come to accept that I cannot do more than one event in a day, whether that’s a quick trip to the supermarket or running a full-day workshop. Duration of the event isn’t the issue, it’s the fact that I will devote all my executive functioning to that one event. If I have one busy day, I know I will need to schedule a day of doing nothing at all to recharge. Luckily, I run my own business which means I can normally factor in sufficient downtime.
Decades of masking, of pretending to be someone I wasn’t, resulted in long periods of depression, a couple of breakdowns and a handful of suicide attempts. Not being able to just be myself was neither sustainable nor in any way helpful, or healthy.
And now, I endeavour to embrace my life as a post-menopausal, neurodiverse woman. I have a better appreciation for what is important in life as a whole as well as in my life. Knowing myself, trusting myself, and being myself are vital cornerstones for me now, both personally and professionally.
