Electric belonging: being in a room full of neurodivergent women.
A few days ago I was laid out flat on the hardwood floor of The Ness in Whitstable as part of Katharine May’s Wintering Retreat. I was preparing for a ‘sound bath’, the kind of experience I would have scoffed at a few years ago, or at least considered with a sizeable spoonful of scepticism! My legs were nestled under a wooden chair, the upper half of my body was arrow straight, eyes pinned shut by a bean bag face-mask. I couldn’t get comfortable. I wanted my arms restricted, bound to me somehow, I often feel happier with a belt around me or my hands stuffed in oversized pockets. Jo, our guide through the Sound Bath experience, noticed my awkward fidgeting and said: “Can I give you this cushion to help you feel more contained?” I accepted the offer and she placed a heavy, large cushion over my core allowing me to tuck my arms in and feel safe. Contained. It was a revelation.
I am not going to blog about sound baths today. I want to write about how it felt to be in a space inhabited by people almost all ‘like me’ for the first time. I did not attend Katharine’s retreat because she is autistic, though I knew this because I have read her book ‘The Electricity of Every Living Thing.’ I joined the retreat because I sensed from Katharine’s writing, her podcasts, and her online presence, that it would be a retreat where I – an extroverted introvert who hates ‘group activities’ – would be welcome. The themes of the three-day Wintering retreat also appealed: burn out; seeking out the light; closing the old year and seeing in the new. What I had not expected from the Whitstable break away was to be confronted so powerfully with a sense of belonging amongst others who instantly ‘got’ me even if their life experiences and challenges were very different.
I have Dyspraxia and Sensory Processing Disorder and I teeter on the edge of other neurodivergencies (some of which I could self-diagnose but that I haven’t received formal diagnosis for). I was only officially given a Dyspraxia diagnosis at age 39 in spite of a lifetime of hospital appointments and difference. As followers of an Instagram community I co-founded will know, I am still learning to accept the ways Dyspraxia impacts areas of my being outside of the most obvious movement and coordination issues. This blog reflects well how much I still have to learn!
The other women present for the Wintering retreat were not exclusively neurodivergent but many had Autism, Dyspraxia or ADHD. There was an unspoken (and later acknowledged) comfort in the space where we all seemed to tap in to each other’s way of being with an ease that is unusual in social relationships when you are neurodivergent. I am sociable and confident, but at a party or gathering I often feel like a well-dressed phantom hovering on the periphery of the room looking in at myself. In the retreat space we were very quickly able to hold the weight, emotion and trauma that comes from years of decoding the ways in which we are ‘meant’ to communicate or be with other humans. The room was both peaceful and full of electricity at the same time. I felt both untethered but also contained. I have never felt so utterly comfortable in my own skin. Some of the credit for this goes to Katharine as host for holding that space masterfully. However, I also think there was kinship that emerged from being with fellow canaries in the social coalmine! Over and over again we put words to the way many of us had spent our lives feeling like an alien, the ‘other.’
At the close of the retreat Katharine May acknowledged the ‘violence on our bodies of living with the trauma’ of being undiagnosed women forced for much of our lives to mould ourselves into neurotypical spaces. I am still thinking this through. I have never considered myself as traumatised by my Dyspraxia, or even by the way society has treated me. I see many advantages to having not been given my official label until adulthood. However, I cannot deny that Katharine’s words resonated deeply with me. In the 18 months since diagnosis I have felt angry for the little girl I once was on numerous occasions, I have felt misunderstood as the adult I now am too. All my life I have accepted a narrative of being “too loud”, “too emotional” or “too much.” My voice too loud, my hands and feet too loud, my living too loud.
Decades of fluid adaptation because of my Dyspraxia has left me tired. I first realised this in 2020 during the first COVID-19 lockdown where I felt blissfully free in my own space unshackled from the daily grind that is that bit harder with constant ‘masking’ and ‘passing’. Being in a room full of women where I could sit in dark corners unquestioned, where I could walk awkwardly and laugh about it as opposed to apologising, where I could rattle off my thoughts like a pinball machine rather than as a neat, linear list – all of it was a liberation. The canary in the social coalmine set free!
I am often labelled by others as a ‘high-achiever’. This used to feel like an accolade. I am not so sure anymore. I am happy to be a kite flying free and switching in the wind from this way to that, it is how I am, it is me. It is how I can be resilient and flexible and why I can move from one thing to another with ease. Yet, I am nauseous from always feeling so ungrounded. Often my kite-like self is not dancing in the air, rather I am cut loose, undone, unteethered. I lack containment. I have become so good at hiding this though, I have carefully crafted a social facade – I am ever the ‘good girl’ scoring A-grades while feeling completely and utterly exhausted. The mask I wear had become so well established I started to recognise it as my own face in the mirror. By the end of the Wintering retreat I had written some words in my digital notebook that I think hold very true: “Laura, you are burnt out because you are always functioning in emergency mode.”
I am well aware that to some of my friends, and to the outside world, it may look as though a perfectly “normal” 41 year old person has suddenly started to label all of her challenges as coming out of her neurodivergency. For me it isn’t sudden at all though – I think it is a cumulative burnout that has resulted in the past couple of years in me reclaiming the little girl who was always there. I have always been the little girl who hid in wardrobes to regulate my emotions. I have always had to think about how to walk. I have always struggled to lift a glass accurately to my lips. I have always been obsessed with the ways words sound. I have always seen the world differently.
It’s difficult to explain the concept of limited energy and neurodivergent burnout or grief to people who haven’t experienced it. It is even harder when you don’t have the words for what you are experiencing yourself. What I do know is that on that retreat I got a glimpse of what it means to hold space with others who understand. I got to sit alongside women who are on the same ‘frequency’ as me and allow myself to be me. My thought coming out of that retreat is that I am now playing ball in the second half of my life, I don’t want to do that anymore with a mask of neurotypicality fused to my face, the cost is too high.
Thank you to all the women (and one good man!) I shared space with in Whitstable. Thank you to Katharine for being a mirror reflecting our own light safely back at us and for so gracefully offering her wisdom, openness and time. Thank you also to Jo for being the first person to name my constant discomfort moving through space and time as a lack of containment – it was a profound revelation for me.
There is more to learn.
Thank you for your article Laura. It’s a lovely read and I really relate to how you feel and can imagine the relief of experiencing what you did. I have late diagnosis’ of adhd and bipolar 2 and I am just so comfortable around other people who are also neurodivergent. I always wondered why and what you’ve written makes complete sense to me. I think it’s a mutual understanding of the trauma and stress of living with it but also having alternative minds that come together in an open space where all the amazing things we we have because of our neurodivergence can be free and expressed.
Thank you Emma for these words of encouragement and understanding. I love the way you also look to the positivity that can come out of understanding ourselves, this isn’t done enough and is a reminder to me to do the same!
What a beautifully written piece about the author’s experience at the Wintering Retreat and feeling a sense of belonging among fellow neurodivergent women. The author shares their journey with Dyspraxia and Sensory Processing Disorder, and how they have learned to accept the ways in which it impacts their being. The sense of kinship that emerged from being with others who “got” them was a revelation, and the author acknowledges the violence on their body from years of decoding the ways they are “meant” to communicate or be with others. This piece is a powerful reminder that there is strength in finding one’s tribe and being able to fully be themselves without apology.