I promised I wouldn't write about this
Last summer, I promised—did I, out loud/in writing? or was it only in my head? anyway, I remember thinking—that just because I received an autism diagnosis didn’t mean that this was going to become “The Autism Newsletter.”
The thing is, if you think about it, that’s what it’s always been. You might not have come here for my explicit take on autism, but I believe you did come here for my take which, whether we knew it or not, happened to be an autistic one.
The more I view life through the lens of this revelation, the more I realise that autism has always profoundly informed the way I see the world, not only the way that I feel and act in it. While I’ve been hesitant to talk about it too much here, for an audience that didn’t opt into this specific narrative, I have committed in other, public-facing areas of my life to speak about autism as openly as possible. I’m acutely indignant that society is not equipped with the information that might get people on the spectrum the support they need before the age of 40, and I will absolutely use my own experience to raise awareness about the invisibility of autism spectrum disorder.
Doing so has been cathartic to a great degree, but it’s also been incredibly confronting. It’s taken a spotlight to every single area of my life that I’ve struggled in (which, to be honest, is almost every area and situation in which I’m not alone) and made my struggles suddenly, starkly visible to me for the first time. I believe this whole time I’d told myself I was masquerading perfectly well and that either no one would notice, or that, eventually, I’d fit in. I’m now seeing that neither of these things has been true. The first is mortifying, and the second is devastating.
My experience of life with autism has been an internal one; my external experience has amounted to standing on the outside looking at everyone else. It is a deeply isolating experience. As keenly as I’ve felt what it is to be me, being able to see myself as I appear to others has not been a feature of my autism—I cannot see how I’m perceived, and it’s a dissonance that makes masquerading incredibly hard. I simply have never known if I’m doing it right.
What I’m now seeing is that the internality and isolation I’ve been masking all this time are permanent features. I believe now that it’s possible I’ll never feel fully seen and I’ll never feel not alone.
I’m in the game of acceptance but this particular pill isn’t going down easy. You have to understand that I’ve been trying so hard, for so long. And I really believed that one day it would change.
The advantage of a life spent trying, failing, and always feeling wrong is that I know there’s always something good on the other side of abject despondence. I don’t say “always” flippantly. Nothing bad has ever come of feeling my worst, because as someone on the spectrum I am, if nothing else, a master of adaptation. I learn, I recalibrate, I improve.
The best thing about being an autistic person of an age where she has absolutely fucking had it is that I don’t have to tolerate discomfort anymore. For the past 7 years or so—that’s 7 years prior to my diagnosis—I’ve lived life on my own terms. It’s involved an astronomical amount of trial and error, but also a great deal of choice. My diagnosis has helped me to recognise, more clearly than ever before, what isn’t good for me, and to exercise choice accordingly.
In recent months, I’ve identified people, friendships, and situations that I’ve grossly misjudged. I’ve suddenly realised how often I’ve been the butt of the joke. I’ve started to recognise the ways in which I misrepresent myself in order to fit in and be accepted, and relationships that I’ve chosen that keep me feeling safe based on an incorrect sense of safety. I’m choosing differently now because I understand that inauthenticity comes at a price even greater than I’ve feared my own authenticity. So as frightened and isolated as I feel now, I know that I’m breaking through a wall that’s kept me from the best life I can live as my true self.
That breakthrough looks like saying “no” an awful lot, and accepting rejection, and knowing that I won’t be liked by everyone. It’s a paralysingly awful prospect, but easier, in the worst way, now that I can see that I haven’t always been liked for not being myself anyway. Once I recover from that humiliation, I wonder who I’ll be.
Whom I’ve been all along? What a thought.
But I hate going through it alone. For as long as I’ve got accustomed to living alone, without family or a partner—being self-sufficient and solely responsible for my own security, my own feelings, my own experience—isolation is wearing really thin. I read recently that when an autistic person is having a meltdown—a common response to feeling overwhelmed—the best thing you can do is to hug them tightly until they calm down. Lately, I’ve been longing for someone to come home to, who can wordlessly hold me tight until my body fully relaxes. This isn’t something I’ve ever known to ask for before, and now I do.
I recently joined a writing class. We meet once a week all the way on the other side of town. I misjudged everything about what seemed like a great idea; I thought only that this would be a nice way to meet new people and expand my community while doing something I love. I didn’t anticipate how hard I’d find the very unpleasant commute, nor how much it would take out of me to sit in engaged conversation with a dozen people for three hours. The first week, I came home with a migraine; the second week, I was so overstimulated from the interaction and overwhelmed by the logistics that it took me two hours to get home (I also had a migraine). After that, I resolved to get taxis there and back; the expense would be worth being able to show up and participate from a fairly even keel.
The essay I wrote for class happened to be about autism; it wasn’t my intention nor is it what I would have chosen to share with a group of relative strangers, it’s just what came out when I sat down to write. Sharing it for discussion felt incredibly vulnerable but the feedback was overwhelmingly kind and generous. I’d worried about feeling exposed and making a spectacle of myself, but instead these people who didn’t know me made me feel seen and supported. It was an unexpectedly affirming experience.
I’m getting better at paying attention to conditions that overwhelm me; I know that I am always anxious in groups, and feel better if I can situate myself off to the side, where I am least exposed. Last week, I hoped to arrive to class early to save myself one of the two corner armchairs; unfortunately, I had a meltdown an hour before I was due to leave for class. Even in a taxi, I was going to be late. The idea of walking into a room full of people and squeezing into the last available seat was even more unfathomable than openly asking for help. After a little hesitation, I emailed the group:
I’m running a little late and, that considering, have a pretty audacious request.
My stress levels are high today and it would mean a lot if I could sit in one of the corner chairs, as this will help with keeping me from feeling too overwhelmed.
If someone sees this, would you be so kind as to save me a seat? I’d be so grateful (and quite thankful too that you now know the context for this request).
Despite being the lesser of two horrors, I was mortified all the same (and still slightly hysterical after my earlier panic attack). When I arrived, I was greeted by bright smiles and an armchair, saved for me. Nobody asked me how I was, nobody referenced my email, they just received me exactly as I was. I settled quietly into its cozy hug while I adjusted to the environment and listened to the conversation, which they gradually and gently drew me into, and was unexpectedly moved to discover I felt safe. This was a safe space. The relief was profound, and physical. Reflecting on it now, this might be the first time I can think of that I felt like I could be part of a group without having to fit in.
So I am finding my place in the world. I’m learning how it feels to be myself, and where I can be that openly and safely. It’s not many of the spaces I’ve tried to belong in before, in fact its nowhere I have to shoehorn myself into. There’s a lot of sadness that comes with acknowledging that, but I’m hopeful I’ll feel more freedom, too.
I’ll leave you with this song I just heard by accident, which in my experience is exactly how the most perfect songs we need to hear find us.