I am now almost 57 and post menopausal, although I am still struggling with some symptoms. I feel in many ways that I got off lightly, as menopause can be a living hell for so many neurodivergent people especially. But when I look back to times when I was obviously in burnout, I can see a correlation also. Was it just the menopause or can menopause trigger burnout? In which case then it's a double whammy of being burnt out in hell!
Can I also just make it clear that I say 'people' rather than women, because there are people who do not identify as a woman because they are non-binary and there are people who are trans-masculine who may experience menopause depending upon when they started hormone therapy.
The menopause, like puberty and childbirth, is what is known as a major 'bio- psychosocial transition'. These major shifts in our lives can floor some people but especially neurodivergent people. Childbirth floored my mum. There is no doubt that these major transitions unmask many aspects of being neurodivergent: "I became 'more' autistic. Everything that I had been masking was now on show and I just didn't have the energy to hide it away". We might not realise that we were masking but along comes menopause and for many this leads to the discovery (as does puberty so often for teens) that we are neurodivergent. This is because for too many we are only discovered once we hit crisis. Of course it's also important to say that hitting crisis can also lead to being misdiagnosed and ended up being labelled for years with all kinds of unhelpful and deeply damaging labels.
There has been welcome research into autistic people's experience of menopause. The research participants in this inital focus group were mainly white heterosexual cis-gender women, which means researchers were not able to consider the impact of being marginalised in terms of intersectionality. There are considerable issues for neurodivergent people of colour for example accessing appropriate healthcare, support, pain relief and issues with implicit racial bias. They are also too often missing from research.
Here is a link to the full research “Struggling for Years”: An international survey on Autistic experiences of menopause (2024) Christine. A. Jenkins, Rachel. L Moseley and Rose. J. Matthews et al, that interviewed 508 people.
Looking back at my forties, I can see where I crashed and burnt and how this was not just the impact of environments on me as an autistic person, but also being peri-menopausal.
During the year that my dear mum died in 2012 I was 43 and perimenopausal, except I had no idea as no one told me this is what I was experiencing. My grip on everything that year just disappeared. I felt lost, my anxiety was up in the gods, I was so paranoid about everyone and everything. I lost weight, almost lost my job and my best friend and literally cried all day every day. I didn't know I was autistic or ADHD and certainly had no idea I was PDA. I would have described my experience as a nervous breakdown as no one talked about burnout then.
I was not aware of my exhaustion, I became more and more obsessive and pushed myself, desperately trying to avoid rejection and shame. At the time I was also part of the church and had been since i was 19. The pressure I was under there was immense. Everything was an effort but I was acutely aware of other people's expectations of me and the need to 'have faith and keep going'. I was constantly monitored and there was a great deal of controlling behaviour and bullying. I was crushed, bullied and broken by people who claimed to 'love' me, yet treated me so badly. Fawning meant I gave in too often, put other's needs before my own and went along with things that I should have stepped away from. But I didn't and I couldn't. I paid a price for that.
We know thanks to Dr Beardon that 'autism + environment = outcome' but you can apply a similar formula to menopause, but it looks like this: 'autism + menopause = fire emoji, fire emoji, fire emoji.
Just as puberty can be an extremely challenging time for neurodivergent teenagers, particularly autistic teens, menopause for neurodivergent people can be a car crash. For those of us with ADHD wiring, we have differences in available dopamine and noradrenaline and guess what? menopause means even less available dopamine, due to oestrogen levels dropping by 65%. Yes that much! Oestrogen is involved in the synthesis of dopamine (and inhibiting re-uptake) and dopamine is involved in the production of noradrenaline. We need dopamine for feeling 'good', energy, mood, control of movement, memory, learning, focus, etc. We need noradrenaline for stress responses, blood pressure, attention, circadian rhythm, memory, mood, etc. So, menopause is not just about the drop in oestrogen but the impact that this has on those vital neuro-transmitters and especially for those of us who have differences.
The hell that many neurodivergent people go through during menopause is rarely acknowledged, let alone understood. For example the impact on sensory overload, I know that I definitely experience more sensory overload since menopause. I now also have tinitus as well as misophonia. I know of people who are multiply neurodivergent and going through menopause, who have found their tics are triggered by sensory overload and this has led to social isolation, because being around people who judge you for tics can be very distressing.
(When the above diagram says 'more autistic' I am referring to how it is impossible to mask when you are so exhausted and what was previously internalised becomes externalised).
Parental burnout when menopausal
Many of us, often older neurodivergent parents going through menopause are barely coping with a neurodivergent child/teen at home out of school in burnout; we might be literally white knuckling through each day, hanging on by a thread - because we have to. We cannot afford to fall apart. The pointy finger brigade don't help, they might even be friends and family, with their judgements and not an ounce of understanding: "Your child should be in school, what are you doing about their education? They are just loafing around all day! You need to do more". I want you to know I see you and I hear you. I have been 'that' mum. You have got your child's back and that is what your child needs - a parent who will advocate and fight their corner.
And despite your exhaustion, anxiety, intrusive thoughts, hot flushes, headaches, pain and regularly feeling like your womb is going to flop out onto the floor, you phone the school every morning to tell them your child is too anxious and won't be in that day - because if you don't then they will be marked down as absent (and they still might be marked down as absent even if you do explain they are exhausted and anxious and traumatised).
I literally existed from glimmer to glimmer. There were no big breakthroughs and the journey was long. Very long. I just survived by finding those micro- moments of joy that might have merely been going into my garden for 5 mins to prune a rose, watch the moon or listen to birdsong. That simple but my nervous system thanked me for it every time I did that. Dealing with professionals (CAMHs, social services, SENCos, psychologists and therapists) was unbelievably hard, because sadly they did not understand and lets face it they still don't so often. They didn't just make things worse for us, they actually significantly harmed and traumatised us! One CAMHs staff member was let go of because of the manner in which they dealt with us, which was shocking. But he was just one of a list of many: the nasty SENCo who made my son sit in the freezing cold during PE lessons when he was experiencing significant mental health issues and very low weight. The psychotherapist who literally ran out the house because she was convinced my son was going to have a meltdown. The CAMHs nurse who came to the house to give us support and told my son she was helping mummy by coming to watch him eat. Yikes! All of this added to mine and my son's exhaustion.
Post menopausal
Anyway back to menopause and being post menopausal. I am now creeping towards 60 and I have to say not having periods is an absolute joy. I can leave the house wearing light coloured trousers and not have to think about whether I might embarrass myself. I feel freer. I also think I am gracefully growing into my sausage skin, as a friend put it recently. I accept many aspects of myself and have fully embraced my identity. I do have to pace myself and think very carefully about how certain situations and people could impact me. I no longer have the energy to drive long distances and I can't just eat anything like I used to be able to, as I will pay the price and spend the night unable to sleep due to acid reflux (gastritis is the bane of my life and the result of stress).
What helps?
If you are or think you might be ADHD, but are not on ADHD medication, then do consider this. It can seriously help many ADHDers especially with executive functioning.
HRT didn't work for me as the main thing that caused me the most suffering were migraines and HRT didn't help mine (don't let that put you off though).
Embrace your brain and find other neurodivergent people to have meaningful connections with - I know this is easier said than done. There are groups and hubs especially for neurodivergent people- online and in person. Being with other neurodivergent people can mean less masking, more acceptance, belonging and even co regulating.
A glimmer a day - when you get a moment grab it, it might only be a micro moment but it's something.
REST, REDUCE, RESET. Rest doesn't just mean sleeping, it also means social, creative, sensory, emotional, spiritual and mental rest. Invest in yourself whenever you get the chance.
Less push more flow. We can often be pushing ourselves constantly beyond our capacity (often because of perfectionism and other's expectations and demands). Give yourself permission when it's possible to let yourself get into a flow with the things you are passionate about, maybe things you have put down because you tell yourself 'I don't have time for them'.
Be kind to yourself. Take a day at a time and know that although some things may not be possible yet, the change of season can bring the change we long to see.
If you don't have noise cancelling headphones and you think they might help you then please do invest in a pair. They don' have to be new - there's always Ebay. I have the Sony WH1000XM5 and they are an absolute life saver. If you feel the need for tight hugs and pressure then maybe a weighted blanket can help you? I absolutely love my heated blanket (not weighted) that I got from Lakeland as I easily feel the cold.
Embrace your stims - whatever they are (rocking, swaying, jiggling your legs, jumping, swinging around, swirling etc) then find your safe place to stim away. Stimming is one of many ways we regulate our nervous system.
Love this article Viv - it's a topic area that's not covered a lot and is so pertinent as so many women are being diagnosed late. I relate to so much of what you've said and have put the headphones on my christmas list!