For many, this pandemic has been an exercise is making do with a truncated list of unpalatable choices when it comes to work, relationships, and a social life. But this situation has plagued me and autistics like me for most of our lives. Autism consigns one to a life defined by a lack of choices in some of the most essential elements of modern existence, like employment, social group, living arrangement, and even who we want to be. The pandemic has offered neurotypical people a glimpse of what our lives are like, where we nearly always find ourselves in situations with too few options, all of which are suboptimal. The difference is that while neurotypicals are able to make a lot of these choices consciously, autistics are frequently unaware of how autism has blinded them to other options. Similarly, we struggle to navigate the boundaries imposed by a non-autistic society, not seeing them, or if we see them, not understanding them.
I attempted to pursue a career as a singer/songwriter starting in my twenties. This was long before I thought I might be autistic. Nonetheless, my autism meant I wasn’t able to discern when I was being manipulated and made me easy pickings for bad actors. My pathological lack of success in finding people who genuinely wanted to help me, and instead landing with those who just wanted to take advantage of me, demonstrates how autism imposed a lack of agency that was completely invisible to me. Not knowing what I needed to do meant I accepted at face value whatever anyone told me to do, with the lion’s share of those anyones and whatevers being dead ends.
Some suggested I move to a locale with more opportunities, like New York City or Nashville. I remember being terrified at the prospect. I could not conceive of how to handle arriving at one of these places with nothing more than a guitar and the clothes on my back. And although I was completely unaware of it, I was also terrified at the idea of being that far from my parents and sister, who made up the majority of trustworthy people I knew. These realities meant the choice to move somewhere else just wasn’t available to me. (A silver lining here is that in retrospect, it seems unlikely that I would have been successful no matter where I went, because my autism, and its associated gullibility, would have still been with me.)
There was a period around the same time where I washed out of a series of entry-level jobs, like receptionist, salesperson, server, that sort of thing. I would start out well, and then a few months in I would lose focus and start making erroneous assumptions and mistakes. I was drawn to people who seemed to get away with bad behavior, making it seem like bad behavior was not a big deal. I would mimic them, with inevitable negative consequences that were always surprising and always seemed unfair. The problem was me, but I not only didn’t realize it, I wouldn’t have known how to fix it even if I had.
I had the same problems socially, bouncing from group to group, doing well at first, only to have people suddenly start withdrawing from me and shutting me out after a few months without me knowing why. I landed with a group of addicts and alcoholics for whom social ineptitude was far less important than keeping the river of mind-altering substances flowing. They glorified their horrific lifestyles and there I was again, trying to mimic them, not having any idea what the consequences of it might be since I never saw anyone suffer any. I narrowly escaped some dangerous situations, and was lucky that after a few years, I got tired of the whole business, and ducked out and dumped my phone before anything life-changingly bad happened to me.
This meant I had to start over with another new group of friends. I got better at choosing associates as time went on, but my instincts remained unreliable and I was still plagued by bad actors when it came to music. I exerted myself to model good behavior instead of bad, but I didn’t have a scaffold to hang it on. It was just rote memorization and guessing. And my anxiety, no longer smothered by substance [ab]use, became immobilizing. For a year, I suffered from horrible stage fright and was so nervous I could barely perform in front of an audience.
I also still didn’t understand how friendships worked. I didn’t know how to maintain them, and I was afraid to ask for help after so many instances of being burned by people who exacted a toll for “favors.” In my late thirties, having exhausted every possible avenue I could think of and having failed to figure out what I needed to do to be successful, I gave up on the music career altogether.
This led to another social group change, this time with a new boyfriend and his friends and a new line of work, training to be a veterinary nurse. I had more success with this friend group–I’m actually still friends with some of them, including the now ex-boyfriend–but I still had to deal with regular screw-ups that required a ton of apologizing for things, some quite serious, that hadn’t seemed wrong to me. And while I was a good animal nurse, I was still a crappy employee. Another several years were thus invested in another dead end; not only could I not keep a job for more than a year (and often less), I was beset with pain and injuries that made it impossible for me to do the animal wrangling. These were a surprise, too. Many autistics, like me, are generally unaware of their bodies’ internal states. I just pushed myself till I broke, an occurrence I repeated almost a half a dozen times over the last thirty years, and for which I’m still suffering the consequences.
While the first few years with the boyfriend were wonderful, I stayed with him too many years after that because by that time in my life, while I wasn’t sure if I was autistic (although I had started considering it), I had learned that my instincts could not be trusted, and if a kind and loving person thought our relationship should be a certain way I assumed that he was a better judge of the situation than me. Also, he was the first genuinely good man I’d ever been with; someone who didn’t want to take advantage of me, or alternatively, have some major psychological issues of his own, and I was afraid if I left I’d never find anyone else like him. Our first real argument came after nine years, when I was finally able to tell him that I wanted something other than his preferred relationship parameters. We broke up not long after.
I didn’t start privileging what I thought was best for me–and not what other people told me–until my early forties. And while this seems late, I’m not sure I would have been able to figure out what was best for me any sooner. It wasn’t until a few years later that I gave myself permission to treat myself as a person of value. And while I look back on my life and resent the choices I made, the sheer number of instances where my autism kept me from accessing alternatives makes me doubt whether it could have happened any differently. Peers did try to help me, but I couldn’t tell the difference between help and harm. Other people were always opaque jumbles of seemingly unrelated attributes, and well-meaning or no, I didn’t understand them and they didn’t understand me. I didn’t figure out how to start seeking out people who did understand me until relatively recently.
Now I’m in a position where people ask me to explain their autistic children or loved ones to them, and it they’re almost always disappointed. First, since autism affects everyone differently, I’m inherently limited when it comes to specifics. There are as many different forms of autism as there are people on the autism spectrum. Second, the labels people fall back on to try to understand us or contextualize us, like high or low-functioning, verbal or nonverbal, hyperlexic or hypervisual, fail to express what the experience of autism is actually like, including that those labels are the least important differences we have.
What actually makes autistics different is that we experience our internal and external environments in a way that is completely unlike that of non-autistics. But most people don’t know what to do with this information. They want something they can grab on to, a context they can place themselves in so they “get” it. As a result, people who want me to “explain” autism to them are rarely satisfied with what I tell them. I’d rather say “I can’t explain it to you in a way you would understand,” but I have learned that is not something you should say to people.
Sometimes I pivot to the real world implications of autism, that the most important challenges autistics face are the ones imposed by a neurotypical society that punishes us or tries to force us to change when we think or feel or act in ways that feel natural to us. I don’t usually get very far with this, either. The idea that human instincts are not universal and that autistic instincts are vastly different from neurotypical ones, let alone that autistics have to completely suppress their instincts to relate to neurotypicals and that I am suppressing my instincts just to have this conversation with you–it’s all but inconceivable. Neurotypical people rely on their instincts to function. They struggle to imagine something as completely foreign as having to navigate life without them.
But this is how it is. Autistics are trapped in an indelible structure of ableist boundaries that we don’t understand, and this combined with our neurodivergence robs us of the ability to make choices neurotypicals take for granted, like how take care of ourselves, not just the basic needs like personal care or employment, but higher needs, like what kind of life we want to have, where we want to have it, and who we want to be in it.
We just want to be able make these life choices for ourselves. We want someone to explain our choices to us in ways that we understand, not shrouded in suggestions and metaphors and surreptitious judgements that render these choices invisible to us. We want to throw off the narrow confines imposed by employers, peers, families and caregivers of what is “normal” or “appropriate,” of needing to act and speak and even think a certain way so that we don’t upset non-autistic people, so we can work with them, so we can have relationships with them.
I never had a choice about any of those things. From a young age, I received near constant external feedback that the things I did and said, and even felt and thought, were wrong. As an adult, I so craved validating experiences that I created a completely opaque neurotypical mask that covered every natural thing about me, and made sure I was useful in some way to everyone I had a relationship with so they couldn’t stop speaking to me, or shut me out, or disappear. I’m only just now figuring out how to disentangle all that from the person I actually am, with that person still ensconced in the working draft phase. I’m only just now learning to forgive myself for the huge pile of screw-ups I accumulated because autism made it so I didn’t know what else to do; to forgive myself because in far too many of those situations, I didn’t have a choice.
Now that I’m allowing my autism to be a part of who I am, some have referred to me as a role model, much to my dismay, because I strongly advise against signing on for the crippling self-doubt that propelled me to learn to hide my autism so completely. I sacrificed my true self on the altar of a neurotypical ideal for over two decades; I am a poster child for unhealthy, self-defeating coping mechanisms. I’m still trying to figure out how to be social creature in this milieu while maintaining my self-possession, how to break from the negative self-talk that was a precondition for maintaining my social facade. I’m still working on accepting that my real self is not bad or wrong or worthless, after a lifetime of feedback to the contrary.
I sympathize with both sides of the ongoing controversy in the autistic community about whether we should or shouldn’t mask (hide) our autism. Because, you know, of course we shouldn’t have to…but if we want to have any choice in our lives at all, well, hiding is the only option. Our society just isn’t ready to accept people like us yet. It still doesn’t have a lot of good choices for us. Someday it will, I hope, even though it will be far too late for me, and maybe even the generation after me. But, hopefully, someday, because of the choices I’m making now, it will.