Hey folks—
This morning, I sat in the chair facing my window that faces the courtyard. Through the verdant ivy-framed stained glass windows of the stairwell opposite, I could see people coming down the stairs; fixing the straps of the bag in the manner of someone who’s just put it on and is adjusting it to make sure it sits across the shoulders comfortably, and the slightly-harried gait of one who has someplace to be. I was touched at the idea of these strangers waking up, getting dressed, and readying themselves for this day. What are they expecting?, I wondered. What are they looking forward to? What are they hoping for? I hoped they found it.
My gaze wandered to the rich greenery that has been thriving for years on the walls of the building, and I thought of who might have planted it and nurtured it. Are they still around to see it now? (A fact for which I’m extremely grateful is that on my side of the building, the ivy died years ago; I shudder to think what it would have done to my mental health if I’d spent the last four years on the other side of the courtyard, facing the carcass of the once-abundant vine. I expect that I—or at least my spirit—too, would have withered and wasted away.) And who made the coloured glass panels? Someone had put thought into the design, presumably; and then they, or perhaps someone else altogether, had produced them. Someone had brought them here, and fitted them. What of them? How many people had been involved in the caring, painstaking process of creating the conditions for this fleeting moment in which one stranger briefly witnessed and wondered about another through green and glass, unbeknownst even to them?
My entire life is nothing if not a series of moments like this one; a rabbit hole of wonder and wondering. One question unfolds into another into another into another, and my life is now designed in a way that facilitates days spent sitting, observing, and musing. I was five or six when I first became aware of consciousness—I didn’t know that’s what it was, of course, but that’s when it occurred to me that just as I experienced life, myself, and others through my own perception, so did everyone else. This has never stopped being all-consumingly fascinating to me. There are many, many questions—new ones, daily—that occupy my mind but if I had to pick only one, it would be, “What is it like to be you?”
What is another? I, myself, have been An Other my whole life—discernibly different, both to myself and others—so social groups have always been a curiosity to me. As an adult, my life is enriched by many, many deep—the only way to relate to me—friendships, but I’ve never been accepted into, nor felt comfortable in, a group. This is undoubtedly as a result of my social awkwardness that makes me malfunction outside a 1-1 context in a way that is uncomfortable for everyone, but the idea of collective belonging is alien to me in a way that, unsurprisingly, excludes me. There hasn’t ever been a circle I’ve fit into, so I’ve spent my life as my own little peripheral circle, bouncing around between, and periodically intersecting with, circles of culture, identification, race, art, beauty, intellect, profession, language—always wanting to stay, to fit in, to be part of something, to be claimed by the collective, but inevitably finding myself drifting again, like a comet shuttling between solar systems.
It is, of course, all material. Although I toyed with notions of being anything else—any more “acceptable” profession, or one with greater prospects—I could only ever have been someone who reports on the human experience from the inside. A Vedic astrologer recently told me that I “have had great difficulty in this lifetime being incarnated in a human body”. I have, actually, spent my whole life feeling like I’m masquerading as a human. I learned how to behave like one by watching others, and emulating socially-acceptable human behaviour by observing and replicating it is second nature to me. For 40 years, this is how I’ve existed in the world.
If this sounds a little “off”, or even alarming, allow me to contextualise by explaining how this all came up in a recent autism spectrum disorder assessment and, subsequently, diagnosis. This is news that will make a lot of people who know me go, “Ohhhhh.” Yes, it turns out I am autistic, and have been—undiagnosedly—for four whole decades.
As much as the penny will drop for some, others still are shocked. “You?!” I’m commonly asked, because I don’t “look” autistic. This is precisely the reason why I was never diagnosed until now, and why so many, many others—mostly girls and women—will go undiagnosed. Because we’ve learned to identify autism by what we’re told to see, no one has been looking for it based on how it feels. This is because—as a society—we don’t care about or ask girls and women how they feel.
If I sound hysterical, let me assure you this is in fact a proven and perfectly rational explanation for why women have been largely undiagnosed with autism, a very “male” condition.
To all those guys who have told me, “You’re not like other girls” (before subsequently losing interest because they find me too complex)—yeah bro, I’m literally autistic.
But maybe I am like a lot of other girls. And maybe a lot of them are like me. We just wouldn’t know it.
(Important note: please apply everything I say about girls to sensitive boys, who have been overlooked in autism research and diagnosis for the very same reasons.)
For as long as autism has been researched, it was studied in boys. (Male-focused medical research is systemically typical; if you don’t believe me, I won’t educate you. It’s easy to find, please look it up.) The ways in which autism presents in males became the benchmark for how it is identified—because it is identifiable. It presents externally. As a result, what we think we know about autism is visibly symptomatic—ranging from “socially-incompatible” behaviour to savant-level skillsets.
A fun aside that perfectly illustrates this point—this is what came up when I looked up “savant”:
Note the use of “he”. Also note the juxtaposition of “exceptional aptitude” and “significant impairment”. Not least, note the use of “idiot”.
To all those guys who have told me, “You’re not like other girls” (before subsequently losing interest because they find me too complex)—yeah bro, I’m literally autistic. But, it turns out—maybe I am like a lot of other girls. And maybe a lot of them are like me. We just wouldn’t know it.
As it turns out, nobody has actually been looking for autism in girls—because it required digging a little deeper than the bleedin’ obvious, and because not looking was compatible with the systemic expectation placed on girls to stay small, stay quiet, and accommodate others. Empathy and emotionality are key traits we’ve been told don’t exist in autism spectrum disorder—in reality, amplifying the former while suppressing the latter is how autistic girls learn how to survive in a world that doesn’t recognise them and expects them to fit in, keep up, and be useful. Whereas we’ve learned to identify autism by external behaviour, we now know that for girls, autism is a cripplingly internal experience. One that we have never, ever been told to look for or question any more than we can recognise or dispute our own discomfort.
, the bestselling author of The Electricity of Every Living Thing, her memoir of a midlife autism diagnosis, has said that we’re only just beginning to learn about autism for the simple reason that, until now, the autism narrative has been largely “outside-in”—that is to say, third-party so-called “experts” describing what it looks like—whereas now, we are increasingly privy to a first-hand narrative telling us what autism spectrum disorder feels like for the autistic person, like this one. Many women are only getting diagnosed as adults when a child they are related to is diagnosed—ASD being a genetic condition, scrutiny pretty quickly extends to immediate family. This was precisely my experience.I was there to meet my nephew the day he was born. I took in his beautiful face with an unmistakably already-wary expression, and I delivered some regrettable news to my brother and sister-in-law: “Guys, he’s gonna have a hard time. He’s just like me.”
I had no idea that I was delivering a diagnosis; seven years ago, ASD was not remotely on my radar. I simply recognised him on some deep level of wiring, and my assessment very quickly proved to be correct the more he showed us who he is. I identified painfully with him, especially at milestones; integrating into school, especially, has been heartbreakingly hard for him. I began teaching him to identify his emotions very early, but still witnessed him swallowing a deep emotional response and rearranging his face to accommodate the adults around him. This is called “masking”, and it’s a skill many autistic children develop early on once they learn that they, and their profound complexity, are an inconvenience most people don’t know how to respond to or support. He was officially diagnosed with ASD when he was five, and through his assessment process our family’s lens quickly swiveled to me, at which point I began investigating it myself, culminating in my diagnosis a couple of weeks ago.
As you might imagine, this doesn’t even begin to scratch the surface of what I think, feel, and want to share about autism, my experience as an autistic person, and my assessment process. I also have a great deal to say about the system that has overlooked and marginalised me, so many of my sisters, and my deeply-sensitive brothers. My diagnosis has also made a tremendous difference to how I feel and see myself; indeed, I feel that I can see myself clearly for the first time, because this whole time I’ve been peering through a lens of “should” and “supposed to” and exhausting myself in the process to debilitating effect. The diagnosis is a profound relief; it has also been deeply emotional, and I have spent weeks crying years of tears.
“What difference will getting a diagnosis make?”, skeptics asked me before my diagnosis. In practical terms, I don’t know yet. Because I’m me, there will inevitably be storytelling and advocacy. Something else that emerged during my assessment was the apparently curious fact that, for as long as I can remember—or perhaps for as long as I’ve known what literature and a narrative are—I’ve had a narrator in my head. Not a voice in my head, per se, but a third-party observer narrating every thing that happens to me. Now, I understand that this was my brain’s way of helping me to comprehend, moment by moment, what I was experiencing through its best effort at an objective lens. My takeaway from this is that I have served myself incredibly well; realising the degree of my resourcefulness and fortitude has brought me to tears. Another main takeaway is that yes, of course I’m going to write about this; I’ve been writing it my whole life.
For now, the difference is just for me; embracing and validating myself as much as it takes to make up for 40 years of wondering what was wrong with me. I’m allowing myself to communicate as freely as I need to—even more so than before, to the dismay of some (hey Chaz)—without apologising, and I’m choosing company and environments more selectively with a renewed understanding of my needs. Besides that, I want to start simply by correcting our impression of what autism spectrum disorder “looks” like.
Me.
It looks like me.
Things that have helped this month
Deactivating Instagram
I always feel so dumb when I realise how good this is for me. I don’t know how I keep getting sucked back into that vortex; I think there are some people who can use Instagram responsibly, but I am not one of those people.
Kambo
There will be a separate post on this because there is so much to say. Cliff notes: It’s frog poison used as an indigenous medicine; there is vomiting involved; it is an intensely uncomfortable experience; I feel amazing afterwards. Also, the right practitioner is everything; don’t even think about doing it if you’re not confident about or don’t feel 100% secure with them. I will say more about this—write me about my guy if you want his deets.
An enlightening literary gift
My ex-sister-in-law (at what point do I start calling her “one of my best friends” or simply, “my sister”? I’m very bad at navigating changes in status) gifted me this book for my birthday. It’s a critique of modern dating and relationships through the lens of history, philosophy, and sociology in a graphic novel format..? It’s a deeply illuminating read that has made me go “HUH!” a lot. I think everyone should read it.
ASD resources
I haven’t been reading all that much about autism spectrum disorder because I’ve been trying to keep my focus on my own experience and prioritising self-led validation. For those who want to know more, Katherine May’s website has a great resources page, and I also found her episode on my favourite podcast very helpful indeed. My cousin sent me this article, which was also incredibly validating.
Good energy
It’s kind of an overused term (and also my most favourite compliment), but real good energy—not to be confused with “good vibes”, yuck—is an elusive alchemy. In my opinion as a sommelier of good energy, it has to comprise good intention, love, joy, purpose, and the right delivery. Add to this great music, sunshine and warmth, a beautiful setting, art, and diversity, and you can’t go wrong. That’s my review of Expressions: In The Garden, an embarrassment of talent and beauty. You can keep up with Expressions here and don’t miss their next event—I’ll be there.
Family
Mine live everywhere but here, so every day I get to spend with them is precious. So far this summer I got to spend a week in Berlin with my brother and a week with him and the kids in France, and I’ll make my annual trip to India in October to see the folks. These are only snatches of time here and there, and goodbyes keep getting harder. Lately I’ve realised that I need to be closer to them, so a move—at least to France—seems imminent.
Snacks
I’ve never been one for junk food but lately I’ve had an inexplicable craving for, mostly, the Japanese snacks of my youth. It’s not gluttony, it’s nostalgia. I didn’t grow up on these crisps but can now claim with some authority that they are the best ones.
Cats that have helped this month
I’ve been getting very sentimental about Mr Munch, who turned 10 this year. The other day, it occurred to me that he has seen a whole decade—the entirety of my thirties—with me. We’ve both just entered a new decade, and I wonder what it holds for both of us. I feel terribly maudlin about the implications of his second decade, especially as he gets more docile and affectionate than ever. I’ve never known a cat so full of wet-nosed kisses, and I’m loathed to spend even a day apart from him.
Olive is a year behind him—she’s nine, which is a misleading and temporary comfort. Recently, she went missing for a throat-clutching 30 minutes. After scouring the house and shaking her treats to no avail, I saw an open window and feared the worst. A neighbour asked me Olive’s name so they could call for her, and I told them that she was Olive but also answered to Chips. “Don’t we all,” he said knowingly. Quite.
Anyway, she was in the house all along. Where on earth do they hide?? A momentary fright that made for a cute anecdote.
This is the only photo I’ve taken of my girl recently, purely because she’s in my face less than Munchie. Please do not come for me (Leo, I’m talking to you).
My friend Lukas complained to me recently for not keeping my updates shorter and more frequent. I do not know how to do this. I do it for a living, but the only thing I don’t know how to edit is myself. Can I blame it on all the autism? I mean, probably. Anyway, I’ll try to follow a more digestible schedule—God knows I’ve got a lot to say.
If you have any questions about what I shared today, please don’t hesitate to reply—and if you would, please do so in the comments so it’s available as a dialogue for others who want more information about ASD. The goal of advocacy is amplification and awareness.
Have a beautiful August!
Love,
P.S. Speaking of cats and travel, I’ll be away for a whole month in mid-October to mid-November and will be subletting my Prenzlauerberg flat. As I no longer can use Instagram to do so, please share this with any cat-lovers who are looking for a Berlin sublet—I’ll rent it out for a reduced rate. Friends of friends only please, and feel free to make the referral by replying to this email. Dankeee 🫶
So moving 🤍