One of the sagest pieces of advice I’ve ever received is to ‘begin where you are’.

It’s helped me through all manner of dysregulating situations: trying to find my feet after meltdowns, shutdowns or sensory overwhelm, coming back from the embarrassment of sinking into catatonic freeze poses in public places, or simply galvanising the vim to get back to my desk and working again when it feels like I’ve fallen far, far off my own map.

‘Beginning where I am’ always brings me back into relation with the present moment, with myself, with whoever else is there with me. So let me start these newsletters as I mean to go on, with honesty, presence and with myself as the ground zero for our forays off around our neurodiverse universe. And where I am beginning? In pain.

I’ve been in serious pain, now, fairly consistently, for about eight years. I’ve clocked up months, in aggregate, coiled around myself in agony, unable to move or speak, almost unable to think.

This isn’t especially news-worthy. It’s boringly common for women and appallingly so for those who are neurodivergent.

The ‘gender health gap’ experienced by women and people assigned female at birth (AFAB) is now long recognised. For those who have not come across the term, it describes the health and healthcare disparities faced by individuals on account of their gender. For example, here in the UK, we have longer life expectancies, but experience chronic pain conditions left undiagnosed and untreated for far longer than men and people assigned male at birth. For the kind of pain I experience – gynecologically rooted and at least in part endometriosis-driven – it currently takes eight years on average before even an initial diagnosis. Every time I emerge from a week or more of unbearable pain I have to begin again, re-find my feet at the end of shaking legs and try to weave myself back into a present moment where life is happening and I can participate. I have to begin again, knowing I’ve missed important birthdays, I’ve not shown up for coffees, I’ve fallen behind on work commitments and yet here I am once again and the day is stretched before me…

For neurodivergent women and AFAB people the gender health gap is all the wider. In part, this broad yawn between care required and care received is influenced by the communication barriers and mutual empathy ruptures that interrupt the provision of adequate healthcare for autistic and otherwise neurodivergent people. In fact, in a pleasingly felicitous turn-of-events, the post lady happened to hand me a parcel mid-way through writing this missive, containing my author copy of The Double Empathy Reader, edited by Damian Milton, in which myself and some colleagues write about exactly this in our chapter ‘Autistic, hysteric: Inequity in Health Care for Autistic People Assigned Female at Birth in the United Kingdom’. We’ve published the chapter Open Access so you’ll be able to read it for free soon, likely here.

But there’s something else at play here that’s deeply embodied. Emerging research by Dr Jess Eccles and colleagues, for example, has highlighted how neurodivergent people are twice as likely to be hypermobile and experience related connective tissue disorders than neurotypical people (with greater odds in females than males) whilst also experiencing increased pain and dysautonomia (a disruption of autonomic nervous system regulation). Autistic and ADHDer women and menstruating people are dramatically more likely to experience PMDD (Premenstrual Dysphoric Disorder – a hormonal health condition causing severe and disabling mood swings and pain). Somewhere between a quarter and a half of autistic people are thought to experience some from of ‘central sensitivity syndromes’ (including chronic fatigue syndrome, fibromyalgia, migraines, irritable bowel syndrome, restless legs syndrome or temporomandibular joint disorder). The idea that neurodivergence is a whole-body phenomenon, not just a brain or mind thing seems to me to be incredibly simple when you think about it. Of course it is. We left behind Descartes’ dualism long ago.

So it’s curious and slightly unfortunate timing, for me, that next week I will (finally) see a new consultant in a top NHS endometriosis clinic on the same day that the Royal Society of Medicine are hosting an event entitled ‘The invisible impact of COVID-19 on hypermobility syndromes and neurodivergence- bodies, brains and burnout’. On the one hand this feels like it’s been a very long time coming. On the other, it feels as if it’s come out of nowhere.

I’ve been aware of Dr Eccles’ work and SEDSConnective – a community-led charity dedicated to supporting individuals with symptomatic hypermobility who are also neurodivergent – since around 2019 when I joined them both for an online symposium hosted by the Brighton and Sussex Medical School (BSMS) called ‘Challenging stereotypes: Novel perspectives on autism’. Back then it felt like fringe theory, with a small group of researchers fighting against the tide of general understanding.

Even when I began delivering Seed Talks on ‘Autism & Women’ at the very start of this year, it felt like the neurodivergent body-brain connection was an important but very niche thing to include. Yet here we are, just a few months later and it is the focus of mainstream cutting-edge medical training. The momentum is dizzying and I’m absolutely here for it.

So anyway, welcome to my first post-proper. Thank you for spending your precious time on my musings. I hope to see you again here soon, when we can begin again.