It is April of 2020. It is, I’m frequently reminded by social media, autism awareness month, autistic acceptance month, or even autistic advocacy month, depending upon who you ask. Every year for the past three years that this month has rolled around — ever since I found out I was autistic — I feel a sense of gnawing, dread, and nervous excitement. I feel a vague uncertainty, a hesitancy.
I feel I must have something to say on the matter: I am autistic after all, and tons of advocates are making blog posts, writing informative material, selling T-shirts to support the cause, raising awareness for identity-first language and getting rid of functioning labels, and are directing people to autistic-centered organizations. All good stuff.
But when I try to think of a way I can contribute, my mind goes blank. I feel as though I’m at a distinct disadvantage, that this signals a lack of courage or not knowing enough about my own community, as nebulous and nontraditional as it may be. I think, I’m not educated enough, I’m not informed enough, I don’t stay up to date on what autistic people go through, I don’t have anything to say or deserve a platform. I begin to spiral into thinking I am not even “autistic enough” to contribute.
Which is ironic, given that I am essentially doing to myself the same that others have done to me since I was old enough to talk: dismissing me, invalidating my concerns, telling me I fundamentally lack something, that in short, I am the problem. It’s incredible the damage we perpetuate in the absence of others.
I may not be able to speak to bigger societal concerns. From what I know, from what I see, more and more women are finding out they are autistic and are gravitating to the Internet for answers. More and more of us are using a platform for good, sharing our voices and unique perspectives. I’ve been scared to write the raw truth, because it makes us so vulnerable.
My life is a cycle of hiding who I am and finding her again. Rinse and repeat. Most of last year was spent trying new things which scared me, broadening my horizons even though it really freaked me out. There were times it would have been healthier to back down and hibernate, allow my wings to rest, but I kept flying at any cost, afraid if I stopped for one second I’d never get back up into the sky. I’d reach that inevitable end: Burnout.
And I did anyway. Burnout is one of those things every autistic person is familiar with. It comes after too long of a period of smiling when you don’t want to, saying yes when you want to shout no and hide, befriending people for social convenience, giving up hobbies and special interests and “weirdness” to live a more “well rounded life” — though I’m not sure such a thing really exists. Truth be told, trying to live a balanced life is what drove me into such exhaustion I felt like I couldn’t find the ground. I felt like I was walking on a chunk of earth floating high in the sky and could fall off at any minute, that I’d never return home and find the electric connection between my shoes and the dirt again.
I pushed too hard. I tried college clubs and meeting new people. I traveled to three countries. I stayed in packed, loud houses and desperately wished to get away and meanwhile scolded myself for being unhappy and not mingling ‘enough’.
I spent hours on people that I now sorely regret for the time lost. I learned, brutally, that most people can be very kind and interested and yet vanish just as you reveal a part of yourself that’s real, when all you need is a kind hello and a listening ear.
I learned about loss and boundaries. I learned that many people from my past thought of me as docile, weak, passive, innocent to the point of naiveté. They didn’t like me when I stood up for myself and refused to tell them everything. They didn’t like my strength. I had to cut ties and reevaluate my entire conception of the word family. I learned that even people you care about can betray you and take advantage of you.
Being autistic, I think, means genuinely believing that people say what they mean, and routinely forgetting that they don’t. Trying to understand people on two levels makes my head hurt: It is always an effort.
I often forget most people are not hanging on by a tooth and a claw in daily life, that pushing out of bed in the morning is not an agonizing exertion to complete certain routines in order to ensure a baseline level of functioning for the day. I sacrifice fun, spontaneity, and unpredictability so that I can function. There is little if any space in my life for chaos, for the unknown, for surprises. (Though life always finds a way.)
As I write this, having just finished the autistic author Katherine May’s newest book Wintering, I am going through a wintering period of my own. We all are, during this worldwide crisis. We are forced to pause and reevaluate. What do we need? What do we need to let go of?
There is very little silver lining in what I went through much of last year pushing myself to be more social, more friendly, more hardworking, more independent of others. I have the same amount of friends, if not less that I know I can count on. I know now much of my family safety net was conditional upon my being subservient to the demands of others, of complying. I was never loved for who I was or what I wanted but what I could provide to others. I was never thought of as a real, interesting, full person with my own expansive inner world — how I see myself, how I know myself to be. And that is, I think, at the core of being autistic and the sadness that comes along with it. People see the outside and judge us as being one way.
Most don’t bother to stick around, others dislike what they see and try to change us into their concept of the ideal — they see us as blank canvases. A very select and precious few, I’m told, stick around and cherish us in whatever condition we may be in. So I’m told. I haven’t, honestly, met these people yet. That small, tiny hopeful part of me wants desperately to believe they’re out there, that such a friend, or human being exists. But I’m not so sure; it sounds too much like a fantasy. I’m tired of disappointment after disappointment and finding out someone is not who I thought they were.
At the end of it, as an autistic woman, all I can do is try not to tell myself the same things that others have told me all my misunderstood, undiagnosed life growing up: Just try harder to fit in. Grow up a little. Stop acting so weird. Try harder to make friends. Don’t hide in your room all day. Get your head out of books and go outside. Stop living in a fantasy world.
This advice has led me down the wrong paths more times than I can count. Yet despite all those efforts to turn me into something I’m not I find my way back. It’s painful, and comes with huge amounts of grief. It is another adjustment, but at the end is not finding out I’m hiding behind a plastic mask yet again — it’s coming back home after a long day. The shutters might need dusting, and a little fresh air and sunshine would do the place good, but a few cups of tea and some quiet time later I feel that much closer to the clear again. I am two steps in the right direction and am filled with a deep knowing.
And so, for the month of April, which is also the month I turn twenty-three — I’m using this time to advocate on my own behalf, and to stop repeating the harm that was done to me, and remains done to others like me. I will no longer spend time with people who don’t give me the time of day, who seem to forget I exist until I’ve accomplished something they would like partial credit for, that makes them want to associate with me again. I will hibernate, and winter, and acknowledge the down periods, and say hello to the darkness so we can live comfortably together.
It won’t be perfect. I know that slip ups happen, people are not what they seem, and I’m bound to end up at the crossroads of burnout and exhaustion, looking for a way back. But this time around I’m a little wiser and more cautious of who I trust and most importantly, I know myself that much better.
I don’t have a ten step plan. I don’t have therapeutic advice to offer. I’m only okay at self care and often forget to stim, or that sensory overload is a thing. Frankly most days I forget I’m autistic. As someone who discovered I was autistic when I was nineteenth, I am used to bobbing along on the ocean of life and trying not to get crushed under its large waves. Life’s challenges are constant and every day feels like a problem to solve. I’m Sisyphus pushing the rock of resilience up the hill only to have it roll down again the next morning.
I’m not sure it’ll ever get easier. For a long time I believed that it would and though I’ve found ways to use my energy to my benefit and am less likely to end up wide eyed and freaked out in situations I am unprepared for, I still use a ton of energy doing “normal” things. Most things that have always been hard for me still are. I think the only change is that rather than being defeated and crushed to the point of believing I’m a failure of existence, I am (more) willing to accept that I make mistakes and it’s okay.
I’ll always be forgetting and re-remembering. That will probably never go away. Nothing really comes naturally or easily to me and I’m not okay with it, but I’m tolerating it for now. I wish I could import a note of hope to round this out but I really can’t muster something disingenuous. Hope comes and goes I’ve found. Sometimes we can will it and other times we can’t and need to spend all day in bed wrapped up in a soft blanket with a cup of tea (or three) rewatching Gilmore Girls or journaling furiously, not speaking to anyone.
My wish for this April is that it brings young women who have been struggling for years out of their personal darkness in such a way that it doesn’t have to be shameful anymore to talk about it. I wish that other little girls like the one I was don’t have to go through what I did. That their individual differences can be respected and acknowledged as a valid part of who they are instead of something bad they need to change.
I’m a writer and illustrator, not a social activist or disability theorist. I don’t have much scholarly insight or research to offer. I only have my thoughts and feelings and experiences. I like to think that counts for something, but do take what I have to say with a grain of salt, or sugar if you prefer.
In true autistic fashion, I’ve no idea how to end this. But do me a favor and next time you talk to someone who is autistic: Just treat us like a person. That’s all we want and deserve.