Far Beyond Awareness: Autism and Acceptance

If you are Autistic, disabled, or some strange minority, there is a great pressure to be a Good Advocate, a Good Example, because of your awareness that if you are a Bad Example, your problems will be used to paint all of your fellows – some of whom may be less able to speak than you.

It is self-reinforcing, because if you are a Good Example, people will increasingly come to look to you as a Good Example, the Honorable and Communicative Autistic Person, even as they ignore what you have to say about what you and your friends, family, and community need. And all the while, you are intensely aware: A misstep can cost everyone, if your profile is high enough, and even admitting you experience troubles can be ammunition against you. I push these thoughts from my head most days; fortunately, few care what I have to say day-to-day, and those who do are for the most part understanding friends. Their awareness does not erode at my sense of my own humanity.

Awareness and acceptance, these are the words for the days allocated to those of us who are Autistic people. Each spawns an avalanche of well-meaning words, both from us, and those who take our side, and those who work at cross purposes to our very existence while claiming allegiance. To simply know we exist, and we are amongst you is so very, very different than to know we exist and to consider us you. If we are amongst you, it is only natural for you to wish to make us you, even if the myriad ways that are sold to you to make us you instead destroy what makes us, our identities and strengths and weaknesses, leaving only empty shells unable to speak and make ourselves heard, afraid and damaged more by conversion ‘therapies’ than by any negative comorbidity. If you come to understand that we are no less than you, we are members of your community, to the point that you accept us as who we are as distinct individuals of the same tribe, we no longer become alien and you may understand not only our trials — but also our joys and strengths and the inherent value in each of us, as humans. Our existence is no longer a puzzle to be solved missing some genetic piece but rather another color on the rich tapestry of our communities that, whether plain or bright, adds to the great beauty of that which we, together, may be.

If awareness — just as we speak of awareness of pancreatic cancer, of breast cancer, typhoid, polio — is the primary way to interact with us, we become incredibly aware that our existence and the very cores of our identity are only allowed to exist pending some future discovery, a cure. But while it is perfectly reasonable to cure cancers and diseases, identity and simple difference in perspective and processing pattern is a different matter entirely. We do not seek to cure a dog of being a dog, because to do this would deny the dog’s very being even though it may resolve certain weaknesses – hip dysplasia, perhaps — that dogs commonly experience. I would like to perhaps have a more consistently reliable immune system, but I would not trade the way I process information for it. Why would I give up that part of me that not only makes me who I am but lets me see that which few others can know or experience, even as others know things I cannot? I would rather gladly continue to experience the pains I have known, but continue to be. To convince those around me, though, it is not enough to simply be — the ever-present and powerful draw to be perfect, to be the Good Advocate, that my friends and I may avoid destruction in the name of a ‘cure’ sits, waiting, with arms of cold steel and inexorable glue unwilling to ever let go. And so, I come to wish that people were not aware of me, or at least were not aware of my conditions, so that my own individual failings at worst belong to an individual instead of a diverse group with both heroes, villains, and many otherwise average people just trying to get by. If you perceive me only to impute my flaws upon people equally unique with their own various and differing struggles, do not perceive me! You may forget I exist and every one of us will be better for it.

Yet in other places, I experience acceptance. In these, my faults and my strengths are mine alone; my disabilities can be supported without it being some form of burden upon all. In another school, in another life, I knew a fellow autistic person who could not speak, who relied upon a walker and sign language to communicate — and was a better administrator than I hope to be even now. If we are aware of him only, his trials consume all; if we accept him, we may know not just his great skill but the vibrant personality beneath, which I am better for having known. If you are aware of me only, my rough edges, mechanical obsessions, and difficulties are the reduction to which I am brought, and perhaps it would be better if I had never come to exist; if I am accepted, then perhaps I need a little more help — but my value as an individual is equal to that of any other upon this world. And when we are accepted, we do not need to be perfect so that those around us will grant us a little while longer in which to exist, as if scraps from the cutting room floor of time and space granted as a boon to one less fortunate.

Therefore, if you wish to show us some kindness, accept us; if you wish to solve a problem we experience, listen to our words and understand how we see the problem; partner with us instead of dictating from on high what the solution must be (as a particular blue organization whose puzzle piece logo has become hated amongst the Autistic community does). Otherwise, in many cases it would be nearly better if you simply ignored we exist; this adds much less to the troubles we experience. Know us as individuals in a community, with some shared trials, but also with individual strengths and flaws. Perhaps then we will not feel the pressure to hide who we are so deeply, and we may all flourish a bit more together.