We are like sculptors, constantly carving out of others the image we long for, need, love or desire, often against reality, against their benefit, and always, in the end, a disappointment, because it does not fit them.” ― Anaïs Nin
From my first breath in this world, my parents wanted me to be the best at everything. To be successful, strong and wealthy. To stand out in certain carefully selective ways, but only those ways deemed to be acceptable. To be beautiful, desired, well-mannered and socially acceptable. Divisiveness was ingrained in me, in the most pernicious of ways. I was taught to set myself apart from others, to hold myself to the highest standards, and to not be content until I had achieved all of these things and however many more were required along the way. (* Note: I say “parents” as I write this, but only because it is impossible for me to separate out the often opposing desires of my Mother versus my Father)
But, what about being happy?
What about joy? Wonder?
Or the vibrant sensation of just being?
While I tried in earnest to fulfill my parent’s expectations of me, it was never what I myself wanted, nor what made me happy. No one knew of my inner turmoil, which took the form of constant anxiety. I was unaware that my experience of the world was anything other than normal. As I gnawed my fingernails into shortened little stumps, as I retreated into my imaginarium, as I kept telling myself that I only had to do this, that and the other in order to end up here, there or where… all these things. I knew I was different, but I never understood just how much. I hid my perceptions of these things, for they were weaknesses, and I was to be strong.
The strong remained silent and quietly dealt with their inner demons. The strong did not cry, complain or share their worries. But I was not strong, I was only pretending. My parents wanted for me to be stronger than they were. And to succeed within the highest echelons of neurotypical expectations and rewards. While my Mother never said it outright, I believe she wanted to see me working in a well-paid career, married to a Doctor or Lawyer, and living a plush life in an expensive house and all of the accoutrements that such a life brings. But… this is not me. It never was me. It’s wasn’t me back then, and it most certainly is not me today. I have failed their expectations of me in every way possible.
I’ve been inspired to write this, for it’s been something that’s been on my mind for a while. Ever since I started writing and was welcomed into the online Autism community. It’s a very expansive community, quite possibly as expansive as the varied Autism spectrum is, itself. But from my first week of exploring it, I felt a certain amount of uneasiness at the profiles, vignettes, interviews and stories about Autistic women being shared through various media. What I’m talking about is what I’ve had two different friends refer to as “shiny happy stories” or “inspiration autism porn”. (Now obviously, the word “porn” here does not imply anything of a sexual nature.) What I’m referring to are those shiny happy perfect success stories about Autistic people. The ones that you’re glad are out there, but at the same time, they leave you sitting at your computer, feeling even more horribly lacking in this world.
These stories are typically not just incredible examples of Autistic success, but they would considered to be neurotypical successes as well. Is the only type of success in this world that which fits into the neurotypical paradigm? What about people who live a more quiet and simple life, and aren’t on the stage, published writers, accomplished scientists, aspiring artists, or esteemed entrepreneurs? How many of us on the spectrum are sitting here, right now, feeling that we are somehow less worthy as people- because we would never be the subject of one of these “shiny happy” stories depicting autism? I’d wager that there are many of you who feel as I do.
Not only are the stories mostly “inspiration porn”, depicting a very select percentage of those who are Autistic from behind a rose-colored lens, but the stories typically depict white or white-presenting women. I honestly do not believe I have seen a story in the media yet… whose subject was an Autistic woman of color. I write that as a white/white-presenting woman who has enjoyed “white privilege” throughout her life. What about diversity? What about redefining this definition of “success” or “worthiness” in relation to Autistic people? Only presenting these type of stories to the media is an insult to so many of us who are living exceptional lives in our own ways.
I’m far more interested in the grit than the grace. I don’t really care that you’re a successful in any myriad of neurotypical markers. Fascination for me lies in the daily process of your Autistic life. I don’t want to read a long list of someone’s achievements, for I believe that every human being, Autistic or allistic- is far greater than the sum of their parts. When I keep reading the same type of stories in the media, it disheartens me. It makes me feel like there is a separation in the Autism community that is really no different than that which I experience in the neurotypical world, which I have fought for so long to fit into. The old voices return. Those voices saying things echoed throughout my life, such as “You’re not good enough”, “Your contributions aren’t worthy”, “You’re not special like this person is”.
I’m not sure who is at fault in presenting these skewed perspectives, but I feel that it is more often than not, those who consider themselves to be Autistic allies, or advocates. In many cases, it is healthcare providers who feel that by presenting these stories of their choosing to the media, that they are signal boosting the awesomeness of Autistic people. That may be true, in relation to how neurotypicals perceive the stories, if they do in fact, shift their perspective about what Autism is. My issue with this is that they signal boost the awesomeness of Autism at the expense of the majority of Autistic people. And in blatant honestly, that sucks.
I’m Autistic, and I will never fully succeed to neurotypical expectations, whether they standards are those set by my parents, or by society. It isn’t going to happen. I’m not an exception, I’m part of the greater norm. I excel at certain things, but these are not things that are going to put me on the neurotypical map, or end up with my being some feature story in a media feed. And that’s perfectly alright with me. I’m out of the loop, and that’s the way I like it. I’m not going to be a member of the small percentage of Autistic people who travel into space, discover scientific breakthroughs, write computer software, are desired public speakers, are amazing singers/dancers/performers, or any other version of any other success story you might have read, or will read in the future.
I don’t write this to diminish the amazing stories and achievements of those Autistic people who are the subjects of these stories. I write this to protest society’s definition of success. I am sick of it. I am so tired of a lifetime of feeling like I had to be a “success” that the last place I want to continue to have this message drummed into my head day after day is in the Autism community, where I want to feel safe and accepted. In the past month, I’ve unfollowed quite a few news outlets and accounts because I reached my saturation point of having “shiny happy autism inspiration stories” jammed down my throat. I’ve had enough! I’m an Autistic woman and I don’t want to read these stories! I can’t relate to them, and they make me feel sad and anxious.
I want to read about the actual everyday experiences and challenges of Autistic people, and in particular, Autistic women. One of my favorite bloggers is also someone whom I consider a dear online friend, An Autistic Bird Sings. I love reading her blog, because I connect deeply with it. Her writing is visceral and real. It’s about her experiences in her day to day life as an Autistic woman. I’d rather read stories like this any day, than to have one more shiny happy Autism profile appear in my news feeds. She recently re-shared a post she had written several years ago, and it resonated with how I’ve been feeling the last few months. I’m so glad she shared it, because I’d like to share it with you! The post is “It’s no bad thing to celebrate a simple life” and it talks about the pressures which she feels to keep up with the fast pace, demands, expectations and societal neurotypical norms. In one passage, Bird writes:
“What in the world have I done with myself? So many people around me out in blogland, my relatives, and face to face friends as well, so many of them seem to be doing things. Some are starting their own businesses, or run their own businesses (and I have done that a couple of times, very, very, very small businesses), some are writing books or giving classes Online for this or for that. They are so busy, busy, busy. I feel as if it is a bit dizzying but I still wonder why I’m not jumping on the wagon and getting more and more involved as well. Why am I not more actively pursuing these sorts of things too? I think of the things I “should” be doing, but those “shoulds” are not my deepest desires at all. They are what I see everyone else doing. These shoulds are what I compare myself to when I read about what others are up to in their daily lives or what my family and real life friends are doing. It’s all so very busy. It’s all so active. I sometimes feel that I really ought to be doing much more… and more… and more. Maybe that’s what other people enjoy or need, but that is not me or what I can actually handle. Surely there is still room in this world for the simple life. For a slower pace to things.”
That is my definition of success. Living a simple, beautiful, peaceful, happy life. A slower paced, sweeter life. The name of my blog reflects this. SONNOLENTA. It’s Italian for sleepy, or soporific. “Lenta” on it’s own means “slowly”. I don’t want to live my life at the speed of sound. I want to linger in the moments and absorb everything that my senses can, which is an immense lot. I was raised in a world which taught me to run, not walk. And then to fly, not run. I’ve been taught that I must make a lot of money, have a big house, a nice car, nice clothes, and do socially-expected things. The problem is, I tried to achieve those things, because I felt like it was my only chance at acceptance. Isn’t it such sad testament that I felt like my Mother would only find me worthy of love if my house was a certain size, maintained in a certain way, and with me inhabiting it- also kept and maintained in a certain fashion? What about who I am? What kind of person I am? What I contribute to this world? These things don’t matter? Even if they are slight things in the grand overall scheme, I believe that we all have something to contribute. It’s just that so many of us are invisible because we do not contribute in neurotypically loud, societally acceptable ways.
In the last few years since my Autism diagnosis, I’ve experienced a dramatic shift in every aspect of my being. I’ve been able to cast off the barrage of demands placed on me by a society that demands far too much. I have started becoming more connected with what I can only describe as my “true self”, and have found myself determined to purposefully swim against the neurotypical tide, rather than flow with it. I’m more confident and at ease in my decisions, whereas before, I questioned every single one and methodically dissected them, stacking my options neatly on some warped set scale of acceptability. To be exposed to American media and advertising is to be exposed to a message of “more is more”, “more is better” and possession and consumption are worthy goals. It is all about having things, not about having experiences. I denounce this, and on a daily basis, actively work to disconnect myself from a materialistic world view and replace it with one that is more spiritual. Not religious, that’s a whole other topic of it’s own. I am not a religious person, despite being raised in a very strict Baptist setting.
I want to live simply. I want to live within my own means. I want to have minimal financial demands so that I can enjoy the rest of my life, rather than feeling like I am doing nothing other than pursuing dollars or material things. And the best part of this is, that this type of life is more advantageous to my neurology. The peaceful stillness, sitting here. Writing this on an old laptop, on the porch of the small house we are currently renting in one of the quieter corners of South Carolina. Away from the populated centers, off on the edges of civilization. This quietude is what nourishes me, not continuing to live my life forcing myself to meet ridiculous expectations and continually examine my own life’s fruitfulness in comparison to a shiny happy Autism profile I read online.
The next time you read a profile of an Autistic person online, ask yourself… how does this story make you feel? Again, I’m not diminishing the achievements and experiences of the Autistic person in these stories, but I am suggesting that the writers, allies and advocates who put forth these stories ask themselves:
Am I writing only about “well known” Autistic people? Is is possible that I should dig a little deeper, and expand my view?
What do I hope to achieve by publishing this story?
Am I focusing only on a tiny percentage of the Autistic community through this story?
Is this story beneficial to Autistic people, or is it merely a perspective piece for neurotypical people?
Will Autistic people read this story and feel inspired, or will they feel even more lacking?
Am I only featuring Autistic people who are successful by neurotypical standards?
Should I redefine what I consider to be as “successful”, “positive” or “outstanding” in relation to Autistic people, so that I can cast a wider net and portray a more diverse portrait of Autistic people through my writing?
Am I only portraying those deemed acceptable through the lens of white privilege?
Am I subconsciously marginalizing the vast percentage of Autistic people because I don’t feel that they are “accomplished” enough?
How do I define “accomplished”? Can I shift my paradigm to see the daily triumphs of Autistic people in a way that doesn’t stack them up against neurotypical expectations?
I don’t know if those who are writing the stories of Autistic people actually know how many of us feel. I don’t know if they care, because it’s highly likely that the stories aren’t written for our consumption, anyway. But the fact of the matter is, that we feel compelled to read them, because they are about Autism. They are presenting a facet, even if slight, that connects to our personal narratives. We read them. Sometimes we read the same story over and over again. So even stories not written for us, are indirectly about us. And they affect us deeply, whether we realize it or not.
For many of us, they echo the internal struggles we have experienced and the constant push and pull of neurotypical expectations. For me personally, they represent the tidal forces I am fighting to swim against, on a daily basis. I believe that I would not feel this way if a more diverse representation of the Autistic experience was shared, not just those cherry picked for their wagers of neurotypical ideals. We want acceptance, we want inclusion. One way for this to happen on a greater scale is through the actual stories that are written and passed down. Change the narrative, change the direction.