Tomorrow Is Too Long to Wait for Inclusion

The Pitfalls of Passing and Not Passing

a watercolor painting of a scene from the activision video game of pitfall. a person with a labcoat is swinging over a pond filled with crocodiles with a rainbow trail behind them.

By Kit Mead

I have never learned to pass—not fully. Sometimes I do look like a person you could see in the street or in the grocery store and never peg as neurologically different. But I never leave the house without my headphones to protect myself from the sensory assaults of the outside world. I tend to look harried and panicked in public with occasional handflaps. Sometimes noises escape. My stiff gait and mumbled words at the checkout counter give me away if it’s not apparent by now. I am autistic, with a few other comorbid diagnoses like anxiety. It renders the world too bright, too loud, too social at times. Other times, I am childlike and impish, scampering about with a few undignified squeaks. This is usually when I am comfortable with my situation.

I still pass better than many people. You might not guess I’m autistic, after all.

Both passing and not passing have their pitfalls. Despite social skills training, I never learned how to interpret conversations in a way that doesn’t make them slightly awkward unless you’re used to me. I simply don’t understand how to track the pauses in conversations and the times when I should speak and the flow. For other people, social skills training is more “effective,” depending on the goal. They pass, whether their training was with trained professionals or their parents.

Passing means you value us as slightly human:

As in music, I learned my part in life. I look you in the eye and smile. I have been taught to move through the world without making you uncomfortable. I modulate, adjust, check you for uneasiness, measure myself against memorized parameters every waking moment so you can pass me on the sidewalk without seeing disability.

You value me because I am useful in some ways now. You assume I will be more so when I finish my education. I run in your circles sans any illusion of membership.” –Larkin Taylor-Parker [source]

In the same piece, the author notes that it also takes “more practice to fake facial expressions than make a forty-pound horn play sixteenth notes. Tuba can be self-taught.” Learning to pass is often forced upon us: you shove us in a box, reshape us to take on the form of the box and then you praise us for seeming almost human. Personally, I do not experience this burnout and fatigue associated with passing. This is because I make little effort to do so.

But not passing also has its problems. I am not as visibly disabled as some of my peers. For me, the consequences are usually just stares and whispers from unknowing observers. In extreme cases, I had a shutdown on my college campus and the campus police were called – an unnecessary step. In my experience, it did not escalate further. This is not the case for many of my autistic peers, whose “infractions” – often no more than being visibly disabled and people of color – resulted in police using excessive force and/or hauling them off to jail. Not infrequently, my peers are written off entirely as not worthy of dignity, respect, human rights, the right to choose where they want to live, and education – and this is not an exhaustive list.

I am sometimes, but not always, human to you. I live in my own apartment, and I’m even adopting a cat, but I’m going to have to hire someone to come over once a month to help me keep my rented room clean and maybe help me figure out how to do dishes. I completed my college education, but it came with a price tag of more than money. I got thrown out of the dorms my first year. I struggled to graduate while my friends graduated at least cum laude, often resulting in feeling inferior and less worthy of the education and the school I was at. I went into burnout for parts of it, running on autopilot. My mental health tanked frequently.  I now work forty hours a week at a nonprofit that fights to protect the humanity of autistic individuals. Part of my success has been finding a job that lets me not pass as long as I do what I need to do. I have coworkers willing to prompt me out of my chair when I forget how to move.

And I might have a shutdown out in public that resembles a medical emergency and leaves me unable to speak to communicate my needs. Thanks to executive dysfunction, I recently lost my cell phone, but the new one coming in the mail will have Emergency Chat installed.

Whether or not someone passes seems to be the mark of how humanely our society treats us. When we pass, we are seen as human enough to run on the fringes of your circles. You permit us to do so. You expect gratitude. When we pass only sometimes, we do not run in your circles, but occasionally we are allowed to make appearances and seem human. We might end up mainstreamed in schools, or we might not. It’s iffy and situational and the decision is always in your hands. When we do not pass, ever, society  relegates us to the basement in segregated programs at school and in group homes. You  mourn the loss of someone you could teach properly. You lose any semblance of respect for them.

And this is why I am involved with neurodiversity… because our humanity does not have social skills requirements. It does not have speaking requirements. It does not have passing requirements. We are human. See us as such, and quit inventing societal games to keep us in line.

Photo Credit: Doctor Popular/Flickr

Kit Mead is an autistic disability rights activist originally from Atlanta, GA. They are now based out of Washington, DC, where they are the Technical Assistance Coordinator for the Autistic Self Advocacy Network. In addition to their work with ASAN, Kit has been published in QDA: A Queer Disability Anthology and maintains an advocacy blog. When not doing advocacy, Kit hangs out with their cat and writes poetry.

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  • JaySprout

    I pass, most of the time.

    When I don’t pass or when I show autistic behaviour you bet it’s viewed as a personality flaw rather than acknowledging that it’s part of my neurology or allowances needing to be made for my ‘disability’. I’ve had friends completely reject me on the basis of regression when I became unemployed, full-on cutting me out of their lives and blanking me on the street because I’m no longer as social as I one was. I had to leave college as I’ve had teachers unwilling to accommodate me, autism support team rather than helping me forced me to accept an in class aide I didn’t need and who actually made my situation worse, when I struggled the support team suggested that I was to blame for not trying hard enough when they believed they had helped me.

    There’s no recognition that even when we pass this means that on top of the day-to-day stresses that everyone feels we’re having to cope with SO MUCH MORE beneath the surface, that there’s so much additional strain on us just to pass as neurotypical and if we can’t maintain that it’s seen as a weakness rather than our ability to pass as a strength beyond anything a neurotypical person would know. It’s exhausting, and results in burnout.

    • Mary from Terry

      If you’re stressed from “passing”, then stop doing it. Be honest and let the public learn who and what you are. “Passing” stresses out normal people (“neurotypical people”), too.
      My personal experience with autistics “passing” is terrible – my personal belief is that some do it to snag a spouse to financially support them, to avoid “blame” for conceiving autistic children with unsuspecting spouses (we now know autism is genetic), to avoid stigma associated with the disability of autism, etc. The world would be a better place if autistics would stop “passing”, honestly acknowledge their disabilities, and educate the world about their physical, mental and social limitations and desires. Normal people feel duped and lied to by “passing” autistics and often label autistics as mentally ill because autistic behaviors are usually obvious but misunderstood. We do not view those behaviors as “personality flaws”.

      • The fact that your comment includes a statement about neurotypical people “passing” shows just how deeply you misunderstand what “passing” actually means. If you’re normal, you don’t have to “pass” for normal. You’re just normal. What I assume you mean by “passing” is “making efforts to conform to prevailing social norms.” In that case, I must ask why it is perfectly okay for neurologically typical people to conform to those norms but it’s “dishonest” when autistics do it. I mean, by your own definition of the word, we’re all “passing” for exactly the same reasons: “passing” leads to objectively better results than not “passing.” Why should those autistics who put in great effort to conform to prevailing social norms (norms which often make absolutely no sense to us because our brains are simply not wired that way) have to declare themselves and potentially null all of the benefits of their work?

        Would I like to not need to “pass?” Absolutely. Would I like a better world for those autistics who do not have the privilege of even being able to “pass?” Absolutely. But it’s appalling that you would accuse autistics for being “dishonest” while implicitly acknowledging that they’re doing pretty much the exact same thing that you’re doing. Is it possible that maybe you’re “duping” normal people too? That you’re also “passing” for the sake of finding a spouse to financially support you or to avoid blame for conceiving children with autism?

        • Mary from Terry

          Your choice of words confirms my point – normal people conform to “social norms” because their normal behaviors create and define the social norms. They don’t need to “‘pass” because these are normal behaviors for them.
          Autistics don’t need to pass, either, but chose to do so. I’m not concerned with autistics’ desire to pass in casual, routine transactions/contacts like grocery shopping, attending church or whatever. My concern (and personal experience) is with spouse-seeking autistics who know their diagnosis but conceal it from their partner(s) and in-laws, who then produce autistic children and then try to blame (yes, literally blame) the non-autistic side of the family for the autistic children produced. No one should ever be blamed for producing autistic children, especially if those children were born before the scientific world discovered that genetics is the primary cause of autism. But everyone is entitled to know if their partner is a diagnosed autistic in order to make an informed decision whether to continue the relationship and/or to conceive a child with the autistic person.
          This is the situation to which I refer and, yes, it is deliberately dishonest and deceptive. If normal people lie about or conceal their known mental, developmental or physical disabilities from their partners, then they, too, are dishonest.
          There are certain things that all partners in a serious personal relationship should disclose to the other partner, in my humble opinion. They include such things as mental illness, cancer, sexual orientation, incurable diseases, and genetic developmental disabilities like autism. What could possibly be wrong with this fundamental concept of honesty for autistics and non-autistics alike?
          There is often a common thread of generically attacking and demeaning normal people in autistic blogs. Please stop demonizing us. We are entitled to “inclusion” too. Most normal people accept you as you are and love and support you even if they don’t fully understand autism, and I truly think the vast majority of people on the autism spectrum are honest and upfront about their diagnoses. But my family and I have had a very bad personal experience with a deceitful, conniving and manipulative autistic which continues to stress us out on a regular basis in trying to deal with this person. That is the situation pertaining to my earlier comment, and apologize for not being sufficiently specific to effectively communicate my thoughts on this narrow topic.

          • Thank you for clarifying your position. I do not disagree with you that it is wrong to withhold one’s diagnosis from loved ones and particularly one’s spouse — even putting aside the matter of having children, I expect that not disclosing one’s Autism to a spouse would soon lead to all sorts of misunderstandings that can be easily resolved by disclosing and then seeking advice based on that information. In that sense, it seems illogical to me NOT to disclose my diagnosis to those I love. Even so, I like to allow new people to get to know me first before disclosing. I do this not out of ill will or to willfully deceive people but rather as a guard against being prejudged by people based on outdated stereotypes that still inform many people’s perceptions of Autism. It’s just objectively better (in the sense that it produces better results) for me to let people understand me as an individual first rather than having them preemptively reject me based on mistaken ideas. I think that in that way people form a more accurate impression of me than they would if I simply disclosed my diagnosis the very moment we met. But to be absolutely sure, I would never enter an intimate relationship with anyone without having first disclosed my diagnosis. That’s also published advice in a number of books I’ve read about love and Autism, so I want to think there’s some strong consensus on that.

            I am incredibly sorry to hear of your experience. Not only is it terrible to deliberately withhold information which is important to one’s decision to enter a marriage or to produce children, but it is also reprehensible to then deny and redirect the blame for that deliberate deception. I think few people would disagree with you on any of that. And I do think it’s important that we don’t demonize the neurologically typical in the name of Autism advocacy. The response to prejudice should not be more prejudice; it’s counter-productive.

            However, I hope that you appreciate that presenting the situation that you outlined as a broad statement rather than as a personal anecdote or a narrow possibility which technically exists is likely to offend the vast majority of us who are honest to a fault and just want people to understand and accept us. Some Autistics can’t even tell white lies without discomfort because they learned in childhood that “lying is wrong” and interpreted that as a hard rule with absolutely no exceptions or nuances. As you’ve said, “passing” does largely apply to more casual/routine transactions and it’s really about being able to live our lives with a minimum of prejudice from others and it is a thing that we choose to do for that reason, even when it is sometimes stressful for us and causes confusion for others. But not wanting to be prejudiced against is not a license to willfully and wrongly deceive others and I think the vast majority of us wouldn’t even dream of crossing that line.

          • Mary from Terry

            Thank you, Enrico. I do understand your points and would do anything to stop the prejudice I also see directed toward autistics. Surely the prejudice stems from ignorance of autism. Ignorance fosters fear which in turn fosters prejudice.

  • Cara

    I do think same …I pass most of the chances. But When I do not pass It shows me too personalty flaw less than acknowledgement. It could happen because I’m too a human being.
    Cara @ Std testing Texas Thank you so much.

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