As autistic people grow up (ADHD people too), we learn from a very early age that the worst thing we can be is inconvenient. If we must be inconvenient, then we are expected to at least be reliant and grateful, fully dependent on those who we dare inconvenience. After all, how could one expect both support and autonomy? This dichotomy is so ingrained into autistic development that the larger society still seeks to divide autistic people into two camps just as Hans Asperger did. Even if we don’t use the term, “Asperger’s,” anymore, there is still a division of those who are best put to work and those who are best put away. If you have higher support needs, then you are degraded to a service project, a charitable outlet for others to attend to in their free time. It is expected that others speak for you and your inconvenience is balanced by sacrificing your autonomy since others are so very kind enough to care for your needs. If you have lower support needs, then your needs aren’t worth the effort of others. After all, if you can speak for yourself, then you can care for yourself. You’re expected to adapt, hide any sign that you’re autistic because that’s too annoying for others. Then, when you try to speak towards your experience, you’re shut down because, well, you don’t look autistic.
This process of masking offers the choice of being accepted or being authentic. Our entire lives are a balancing act of figuring out how authentic we can be while still being able to find work, to not find ourselves alone all of the time. At first, acceptance is the only goal. Autistic people aren’t raised as ourselves but as “incorrect neurotypicals.” When our natural existence clashes with the expected existence, this creates conflict. There is a right and a wrong way of doing things. We are the wrong way and we need to learn the right way. School doesn’t intentionally teach autistic people to mask. Nobody ever says “oh, you need to act in this certain way to fit in.” No, we’re simply told that our fidgeting is wrong, our questions are disruptive, our happiness is annoying. School is about teaching the right way to do things in a world where we’ve never been considered “the right way.” Over time, we learn to constantly dedicate a huge portion of our daily energy to blending in, to maintaining eye contact instead of actually connecting with others, to refrain from asking questions instead of actually learning, to sit still instead of actually paying attention. It’s ok if we don’t receive as much from life so long as those around us aren’t distracted. Even our medication isn’t our own. On days when I would be happy, when I was my free, energetic ADHD kid self, I was always asked the same question: “Did you remember to take your meds today?” My ADHD meds weren’t there to help me avoid constant headaches or to allow me more control over my mind or help me direct my attention to where I wanted. The meds were there so I would be less disruptive in class. When I was happy, it was a problem. When I was sick and miserable with a 104 degree fever, I was praised for my reserved demeanor. As long as I was a good student, it didn’t matter if I was actually me.
Luckily, my parents didn’t buy into this. I was lucky enough to have parents that actually loved me and not the possibility of what I could be molded into. Despite the complaints of teachers, my parents found me a medication that allowed me to control my behavior, my control- not anybody else’s, while still being myself. As I got older, being “right” was not necessarily my goal. Of course, this was lonely. However, I began to learn that balance was necessary. How much of myself am I allowed to be? I pushed the boundaries constantly. I got in trouble, I lost friends, I was often sent to the hall during class (remember, their learning is more important than mine). Ultimately, I walked a fine line between being “right” and being “true.” I had to, still have to, decide what job advancements or what friendships are important enough to tuck away parts of my identity. I realized that sacrificing my friendships so I could fully be myself left me lonely. However, I also realized that existing in social settings as someone else was lonely as well. Either way, I didn’t have friends, not as myself anyways. The hope in this struggle was that I wasn’t the only one finding this balance. Slowly, I began to find others like me, people who let slip their true identity and who didn’t run away when I revealed mine. It was in this dance of trust and trial and error that I did begin to find some real friends.
I imagine that most people, autistic and/or ADHD, neurodivergent or neurotypical, have experienced the pain of being the compromising one at some point. Someone offers the most convenient option for them. In an attempt at unity, you offer a compromise between what they want and what you want (or sometimes even what you need). It is at that point that they or a third party comes in and offers that you find a compromise between their option and the compromise you already suggested. This continues over and over until you’re left with nothing. The most frustrating aspect of the diagnostic angle of autistic identity is the portrayal of autistic people as inflexible and stubborn. It is true that autistic people rely heavily on structure and organization in a chaotic and illogical world. However, to suggest that autistic people are the stubborn ones is hypocritical. How much do we sacrifice to exist in this world? When an entire society is built around neurotypical people, the simplest accommodation or accessibility can seem like oppression to them. From their perspective, their convenience is of the upmost importance. What neurotypical society doesn’t recognize is that accommodations are the compromise. Autistic people battle societal expectations daily to ensure that we’re treated as human, able to even exist in the same room as others. Asking for neurotypicals to acknowledge our existence isn’t a halfway point. It’s one step towards us after we’ve been forced on a marathon towards them. A truly just society of equal compromise would already have formed a dynamic where both neurotypical and neurodivergent people can exist as fully themselves without being judged as failing at humanity. However, asking for that is considered so demanding that accommodations where we simply request that our existence is acknowledged is simply a grain of sand in a world where we upend our entire lives to tailor towards the social rules of the prioritized demographic.
The result of this world is a practice where autistic people need to bend over backwards. This is so ingrained into our daily routine that we’ve accepted our convenience as our shining attribute. While older generations express confusion when younger people say, “no problem” instead of “you’re welcome,” autistic people recognize just how much we’ve been trained to assure people that their requests are not a burden for us because our deepest desire is to not be a burden to others. As I’ve gotten older, I’ve had to unlearn so many of my tendencies to put the convenience of others above my own needs. I still want to be of service, but I also want to care for myself and I can’t do that if I’m constantly providing others 10 times the energy that they allocate for me. I want to show my love for my friends and my community but anytime that someone thanks me for being flexible after they brushed me aside once again, I feel as if flexibility is the worst possible thing for me to be.
A friend of mine constantly thanks me for being flexible. I wish I could tell him that I’m not flexible. I’ve always relied on structure, and I struggle with change when my schedule is thrown into upheaval. I’ll work hard to clean my apartment in time for him to come over. I’ll take a nap so I can stay up later and I’ll get all showered and dressed only for him to suggest going to a restaurant and meeting up with other people too. So, I’ll change my clothes and head out and be seated at the restaurant only for him to just decide to stay home because the others weren’t going to show. It hurts to not be enough on my own, not worth the energy that he was willing to put forth for others. He doesn’t ask me to do these things but I’m excited to see him so I plan my whole day around it. Even when his decisions make sense, it still hurts to put so much energy into adapting to him only to become a footnote in his eyes for the night. The truth is, I care so deeply about this friend that I will always accept the chaos for the chance to spend time with him or to simply take the burden off of him when he’s not able to make it. He doesn’t realize the effect it has because he didn’t spend the whole day mentally preparing for our plans, excited to see me. In the end, all he sees is how flexible I appear to be because he likes that I’m flexible so I always will be for him.
However, at some point in life, I want to be inconvenient. I want to be comfortable enough in my authenticity to expect things from others without worrying that they’ll stop loving me. I want someone to care so deeply about me that being inconvenient isn’t a burden to them. Right now, the thought of asking someone to put me first is utterly unthinkable. Someday, though, I would like to find someone who cancels plans simply so they can see me, just as so many people have canceled plans with me for the sake of someone they truly love. Someday, I want to meet someone who will care as deeply and as passionately for my friendship as I do for theirs. I want someone who will text me first, where I don’t need to fear never hearing from them again if I’m not the one to reach out. I want to be so deeply desired in my full identity, loved to the point where I don’t have to constantly be flexible and convenient just so they will stick around. I never want to be a burden to those I care about but, if someone were to think of me without me asking them to, I think I would like that very much.
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