see me

This past semester, my final project was a paper that explored the interface among autistic media portrayals, stereotypes, disability laws, and lived experiences. I discovered that I am not unique in the amount of effort I expend to appear neurotypical. I discovered other autistics exert themselves similarly, and most importantly, at a similar cost.

This knowledge, as unsurprising as it may seem, made an impact, and the after effects are still playing out. On the positive side, it presented an avenue through which to accept myself as I am. It explained why my repeated attempts at neurotypical employment had failed so completely, why I run down so easily in public settings, why it takes me so long to recover from overexertion. On the negative side, it was the final nail in the coffin of my attempts to have anything approaching a neurotypical life.

I am an autistic capable of “passing” as neurotypical in a way some would refer to as “high”-functioning. However, because of the cognitive load entailed in maintaining a neurotypical appearance, and the fact that there will always be situations for which I am ill-equipped despite my best efforts, I exist in an unrecognized gap between neurotypical and autistic that does not feel high-functioning in any way. I can appear high-functioning for short periods of time; longer periods result in attenuating efficacy.

Worse, once I become depleted, I have to remove myself from the situation and place myself in a low-stimulus environment to reload. If I continue to push myself, I will suffer a psychological, and eventually physical, breakdown from which I will need many days to recover. “High-functioning” suggests that being in a neurotypical environment is easier for me than for other autistics. This does not accurately reflect my experience. I consider myself a verbal autistic, not a high-functioning one. My supposed functionality varies widely from situation to situation and day to day, and sometimes even hour to hour.

“the autistic stereotype, of a gifted individual with no social skills whose peers gradually adapt to him, does not exist”

The outside environment is, and will always be, mentally and psychologically taxing for me, and expecting myself to function as a neurotypical (NT) for any length of time in that environment is an experiment doomed to failure (which I nonetheless conducted, always with the same ultimate result, time after time after time over the past several years). So it would seem long past time, then, to find a way to change the standard by which verbal autistics measure themselves. We can hide our autism from others, but this does not change the fundamental neurodivergence behind the mask. I now know this and have read primary research data that confirms it.

Accepting it for myself, however, remains a work in progress. Accepted or not, though, this is my reality. Or, I should say, this is our reality. Before I discovered how common compensation was among verbal autistics, I felt as though I were alone, isolated from both NTs and non-verbal autistics, too high-functioning to be considered disabled, but not high-functioning enough to compensate for the fundamental neurodivergence of my lived experience. The handful of NTs that are able to sympathize, if not empathize, with my condition comprises Momma Ape, Poppa Ape, my sister (TNC Ape), my significant other (Captain Ape), and a couple of my closest friends, one of whom has known me since college (and likes me anyway) and another with an adult daughter on the spectrum who “passes,” as I do.

None of them are autistic themselves. They understand that I perceive the world differently, but the breadth and magnitude of this difference is impossible to adequately express.

However, I am not alone in this functional limbo. There are a lot of us who, having ventured off of the isolating islands of our autism, are trying to reach the shore of neurotypical functioning, and we are battered by unpredictable waves of stimuli as we struggle to bring ourselves closer in. Some of us, like me, are able to plant our feet close enough to the shore to engage with our neurotypical peers and withstand the breakers, if only for brief spans of time. Others are unable, or perhaps unwilling, to expend the amount of energy required to maintain that position and remain farther away in calmer waters, a choice that is easier, but lonelier, as well.

Despite the fact that many online communities of us have sprung up, the invisibility of my autism and that of others like me renders each of us very much alone in our battles with the tides. NTs are unaware of the amount of water-treading and wave-jumping required to interact with them. This is most noticeable in the workplace, where we encounter what I have termed the “Autistic Paradox,” wherein we are too autistic to be able to function effectively in most work environments, but too high-functioning to appear to need accommodations. As a result, autistics nearly always burn out, unable to obtain reasonable accommodations and unable to meet neurotypical expectations over prolonged periods.

“the autistic stereotype as a set of special quirks and talents afflicting an otherwise normal person must be dismantled”

To normal people, we do not “look” autistic, or what society thinks of as autistic. The main reason for this is the pervasive autistic stereotype that originated from the 1990 film Rain Man. Thanks to Dustin Hoffman, in media and film, “functioning” autistics are men with savant-like abilities and social deficits. However, the autistic stereotype, of a gifted individual with no social skills whose peers gradually adapt to him, does not exist. A vanishingly small number of autistics are savants, and savants and non-savants alike are equally hampered by their autism in ways inconceivable to a neurotypical person. Because most autistics who participate in society are only able to do so by hiding their autism, the number of us out there, and the challenges we face, are invisible to all but a few non-autistic people.

This cannot continue. Something has to be done. What we go through must be made visible. The work we put in, and how much it costs us, must be made visible. Workplace accommodations must be expanded include accommodations for those with the sensory processing and social challenges autistics face. Our neurotypical peers must understand that the social language they take for granted is a foreign language to us, and the environment that is so comfortable to them is overwhelming to us.

In my paper, I called for autism sensitivity training as a part of employee onboarding, just as sensitivity training around other issues like bullying and sexual harassment is now a part of orientation at many workplaces. Stereotypes about autism are preventing NTs from understanding that to us, the world is jumbled assortment of sights, sounds, and smells wherein nothing is organized in ways we understand, and that in this environment, everyone, even transplants from other countries and cultures, communicates with one another on a level we have so little access to that it seems almost telepathic.

This challenge is compounded by having to navigate it through an extraordinarily high level of stimuli. Imagine every time you step outside, you enter an amusement park on a busy summer day. Imagine the noise level, the smell, the closeness and density of the surrounding people, how loud their conversations are, the children shrieking and yelling, the aggressive cacophony of heavy equipment like roller coasters and spinners. Now imagine being physiologically incapable of tuning any of it out.

That is what the outside environment is like to us. The energy expended to pass as neurotypical is in addition to that we have to invest to manage the distraction-riddled milieu in which we are forced to conduct such a performance. When we leave our homes, we don’t just have to make ourselves look normal to NTs; we also place ourselves in the direct path of an unfiltered fire hose of incoming information from which we must pick out the few randomly oriented drops necessary for us to go about our business while trying to shut out, or at least protect ourselves from, the rest.

NTs need to be made aware of how difficult their world is to be in for neurodivergent individuals in order to better understand what accommodations we need. Importantly, this means that the autistic stereotype as a set of special quirks and talents afflicting an otherwise normal person must be dismantled. Autism is not a set of traits or behaviors overlaid on a neurotypical human being. It is a mental, emotional, physical, and physiological experience of reality that is fundamentally different from that of others, necessitating a broad array of coping mechanisms that remain largely out of view of the public.

“The reality is that verbal autistics like myself appear normal on the outside and are functionally different on the inside.”

I have yet to see a single autistic on video or film whose portrayal is faithful to the mental strain and exhaustion of my public existence. The costs associated with being out in society are never accounted for. My lived experience of autism is, in fact, the direct inverse of these portrayals. The stereotype suggests someone functionally different on the outside but normal on the inside. The reality is, however, that verbal autistics like myself, savants or otherwise, appear normal on the outside and are functionally different on the inside.

That is what I want people to see. I, with my engaging manner and seeming social adeptness, I am what autism really looks like. I will smile when I meet you, look at your face, shake your hand warmly, commiserate with you about traffic or the weather or some sports team or another, and the constant and considerable cognitive investment required to maintain this performance and stay focused on what you are saying will not be apparent. I won’t be picking at my skin or chewing my tongue (my personal stims) or avoiding eye contact or speaking in a strange tone of voice.

Inside, I am expending an enormous amount of energy to look and sound like you even though I am different from you at nearly every imaginable level. Remember this. Remember how the world feels to a person like me while I’m doing it. This is what autism looks like. This is what it is.

See me.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
This entry was posted in Book Two - Mind, Setting 2 and tagged , , , , , , , . Bookmark the permalink.

2 Responses to see me

  1. Elyse Glickman says:

    Hello, C.M.

    Finally, somebody out in the world who is like me in the same age group–educated, successful, fed up with the NT system and gets what it’s like to have to be “more normal” to “pass.” I have had the same criticisms levied against me, need daily naps and experienced a lack of willingness among people to appreciate my gifts rather than use me for what I can do for them as a result of my hard-won success.

    While you were diagnosed fairly recently, I was diagnosed young, and have spent my life building my life in spite of educators, parents, employers and others actively trying to prevent me from having a career and a life worth living. I won’t bore you with my life story, but essentially your blog is the first to report what it’s like to be too “weird” to be accepted by society and too “functional” to get any real kind of support from the government and so-called Autism activists and consultants who are supposed to help, but are just as dismissive and restrictive. I gave up on SSDI years ago, and find that while the quarantine has stopped me from engaging in one of my passions (global travel), it’s allowed me to regroup in a calm way. I am so used to being socially isolated (during long periods of unemployment, before regular freelancing), that my NT friends are asking me for advice on how to cope. This period’s been like going to rehab, taking advantage of therapy, avoiding stressful situations (because there are none right now), and working on breaking some bad habits.

    Thanks for a site I can relate to.


  2. Bucky says:

    This is brilliant. So wish your situation was even a little known in the NT world. I can hear you on NPR.

    Liked by 1 person

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