When I published Letting Him Out on May 30, 2015, I suspected I had a winner. Writing the piece is what drove me to go public with Living Amongst Humans. It was a raw exposition of the arc of my autistic existence over decades, with a well-disguised metaphor that I revealed with dramatic effect. I expected people would be moved. Still, I was surprised when, in a very short period of time, many thousands read it. I reveled in comments such as, “I cried for an hour after reading this.” and, “Breathtaking piece really felt how life would be for my Autistic boy as he grows to an adult,” and even, “This is the most powerful thing I have ever read.” And then, on August 17 I read David M. Perry’s tweet: “An amazing essay on the struggle of passing.”
Passing? I was passing? That hurt. It felt like criticism, even if I didn’t understand “passing” in that context. I wasn’t trying to pass in my essay. I was trying to stay alive. So I researched passing. I read about it on Wikipedia (where else to go first?). Every word stabbed. Reading further articles written by autistic people confirmed my original reaction. Passing was not good. Passing meant the suppression of natural autistic tendencies to fit in.
Maybe I had passed most of my life, but it wasn’t intentional. It was a matter of survival. I stumbled into adulthood clueless about what it took to live on my own, with extremely limited abilities to interact with the confusing human world around me. I wasn’t aware of my autism. Nobody was. I lived alone. I spoke to no one. I occasionally picked up cues to approximate human behavior that would survive at least casual inspection. This wasn’t subterfuge. It wasn’t calculated passing. I was clawing to live.
The energy I had to expend daily to maintain a shaky front drained me. After toiling in the backroom of an electronics assembly plant until ten at night to earn my rent and — sometimes — pay my other bills, I would return to my dirty apartment in Hackensack, New Jersey and collapse onto my bed, a single mattress on the floor, surrounded by piles of newspapers. In the morning, it took hours to gird myself with rehearsed actions for the upcoming day, before walking the mile and a half to work, to begin the show anew. There was no intent to pass as something I was not, because I knew not what I was: autistic. I was barely living.
After researching passing, I realized for certain people, for my generation, growing up in ignorance, existing in solitude, with no support or recognition, not even self-awareness, passing was all we had. Our patchwork lives passed and we were lucky enough to survive, in whatever way we could.
I put the subject of passing aside until this morning, when I came across a video on passing from Amythest Schaber at “Ask an Autistic” which stirred me up again. I love other videos from Amythest. I have publicly praised them in the past. Even this one was well produced and informative. But here they were saying that passing was “kind of gross” (trust me, Amythest is quite articulate). It stung once more.
I understand Amythest’s point, and that of other writers. They are a generation grown up with the knowledge of their autistic nature. They are claiming their own autistic identity. They want to be accepted for who they really are, not required to conform to human norms. Hell, I want that for myself too. When I speak to audiences, I often argue for a world constructed to be more compatible with neurodiversity.
Those autistic voices that speak against passing also mean to reject therapy for children which tries to mold them into neurotypical behavior, bending their will and countering their natural tendencies. I can appreciate this objection, even if no such therapy — nor any other — was available to me. Trust me, I’m all in for the cause. We shouldn’t hurt children. Society should be more accommodating.
What these younger generations may not realize, though, is their passing remarks brand those who lived that way for decades. We passed because we had no choice, because we were struggling to survive, because we didn’t know there was anything different, because we didn’t know who we were.
I am not easily hurt by words. I am rather resilient — unless the words make me feel as if I’ve done something wrong. I am sensitive to that sort of criticism. That has been one of my passing strategies, I have come to realize. I am often slow to notice it, but when humans identify my behavior as inappropriate I recoil, injured. And then, at times, if I am able, I try to change, at least outwardly, to match expectations. It is a painful, if effective, learning technique.
But I don’t want to feel that way in reaction to the words of my autistic peers. Amythest calls passing a “no win situation.” I feel I’ve won. I have hung in long enough, eking out a life, until achieving autistic enlightenment half a century in.
I try not to speak for anyone but myself, to avoid the pitfalls of generalization. It’s hard to say anything universal about people inhabiting the varied autistic landscape. But I can’t help thinking there are so many others within striking distance of my age who also passed as I did, even if not in the same way.
The autistic survivors of these lost generations need a different message: you endured. Be proud of yourself for doing that. Now look at who you really are and how much further you can go. You may be old, but there is still life left, a happier life. You are freed from the stress, from the burden you have suffered just to live. You needn’t waste all that energy on maintaining appearances. Spend it, instead, on things that delight you. Leverage what you have learned about the world of humans to make yourself better and to help others.
Today’s generations of autistic people may take some things for granted. In many cases they were diagnosed as a young child. I’m not trying to minimize the difficulties any autistic person has. In many ways, I have been incredibly lucky. But there’s an advantage in not having to live decades in the dark, alone, not even aware of one’s true nature.
Acceptance comes in many forms. I realize I represent the past. I’m a relic. Because of what we now know, there won’t ever be another lost autistic generation. That’s a good thing. In another thirty years much of my cohort will be dead. In forty we will all be gone. By then, autistic people everywhere will be aware and, one would hope, accepted for being autistic, with no need to pass. To those generations, I welcome you to rejoice in who you are, and to remember us when we’re no longer here. Let our sacrifice finally, fully, bring on a world of acceptance, where surviving is replaced by thriving, where passing is a thing of the past.
Just an elaboration or expansion on your description of older autistic people who didn’t know, our generation.
I didn’t know I was autistic until this year. I am still undiagnosed by a professional, but it is so clear what I am. I too struggled to pass unconsciously just as an act of survival.
However, my struggle nearly killed me. I passed fairly well, but the stress and trauma from trying is still disabling me. Passing for all those years has not left me in a position of any sort of privilege or power. I am penniless and unable to work, completely dependent on others who don’t fully believe I’m autistic. They are learning, but it is very clear that any sort of opportunity for me to be happy at all in the future is to completely deny my ability to pass. It is a complete burden on me, a set of expectations I can no longer meet but that I earned in the past by pushing myself so hard that there is barely anything left of myself today.
I don’t know how to process this in terms of the politics of our advocacy. I don’t expect anything. I am just putting this somewhere where someone else might be able to make sense of it.
Thank you so much for being here and maintaining this space.
Hi Anne. Thanks for being a member of Living Amongst Humans and joining the community. I can only imagine your distress (and stress) as you deal with your current situation. I worry about living up to the high water mark (as measured by humans) that I’ve established. It is all so fragile a construct and can come crashing down so easily. I’m so sorry that you are in a situation where you have expectations set that you’re incapable of achieving now.
I hope you continue to connect with others here and elsewhere and that you can synthesize from that some improvement. It would be great to hear more from you.
I am 28. I was diagnosed at 25.5. And this text…it talks to me.
I am so jealous of the people who are diagnosed at 5, 10, 15. I was invisible and wierd. Loke you, I passed, barely, because it was the only thing I could do.
Thank you.
You point out something very valuable, Ponetium. This isn’t necessarily a generational divide. There are so many, of varied ages, that have struggled in the dark. I’m just glad that, eventually, I was able to see more clearly. Better late than never.
I’m 37. Aspergers is too new for me to have been helped by it… and too old for me to have received it 2.25 years ago. Because I have a combination of physical disabilities, chronic illness, and learning disabilities as well as Autism my interactions with the adult world became even more limited than my childhood world… a “friend” from ages 4-8 who took advantage of me, one from 8-12 who i counted on when amongst humans other than her and my family, and then… I could talk to teachers, a few serious students on academic subjects, do group work (the parts where we weren’t working wore on me) and… be polite and offer scholastic explanations or physical help. I found my 2 college recommendation letters from 1997 and one says that he had never seen anyone I didn’t get along with. But I only ended eating lunch with a book when the Gifted resource teacher opened the room up for us to eat there, and I… largely played Tetris on one of the computers and occasionally took part in some “brainy” train of conversation. I disappeared when it ended. Six years in the same district, 4 in that room, and my fellow seniors’ notice of my existence as they planned the events of that year consisted of a few seconds of silence when I thought I might go to Prom. I went, I drank a glass of punch, I watched. Dad picked me up, we got ice cream at the grocery store for us and Mom as we missed the parlor by minutes (idea he had driving to get me I think).
It wasn’t that Prom and everything sounded fun. We pulled in behind the limo of the kids from before. I didn’t know there was a condition that made faces hard to remember and formal wear made things more confusing. It was the one “Senior” thing I did besides attend my own graduation, which it never occurred to me was an option. It was me putting on the formal dress Mom had made for me for something else that had hung in my closet for Homecomings and other things, and just being there was as normal as I got.
I didn’t know enough to try to be passing or, as I was having increasing difficulties with health issues, have the energy to try to do more than go with the flow. Which, to some, would mean I was “passing.” Between having my nerves shot at pep rallies, struggling through gym until granted relief via asthma attacks, the general chaos of art classrooms, the noise of passing periods and realizing I’d left something in my locker and had no idea how to get to either the locker from the classroom I was at or from the locker to my next class (issue related to face-blindness)… I just was managing. It was the only choice I saw on the information I had.
I get what you are saying about passing. I also grew up undiagnosed. I am trying to undo the damage that unintentionally passing has done to me. I never intentionally tried to pass (I guess technically I did but didn’t have a name for it). I just thought it was something everybody did. I have had severe anxiety since I was a young child and a lot of it is due to trying to pass and figure things out. I now try hard to be myself, whomever that is. I don’t get upset when other autistic people say we shouldn’t have to pass because I believe that myself. We should be allowed to be who we are. My teenager has grown up with the benefit of a diagnosis, but even they, due to outside pressures not from their parents, still sometimes try to pass. They are fully accepting of the diagnosis and proud of it but much of society has been conditioned to hate autism and thus autistics so they will sometimes subconsciously try to act like someone they are not. We shouldn’t have to to this as it causes so much stress.
Your post is scheduled to be shared on my Facebook blog page for Sept. 15 @ 9am!
Thanks for letting us in on what you have experienced. It’s good to see, at least, that people can relate to the theme. It seems like passing will endure.
I’m sorry I missed your Facebook event on the 15th!
In many ways I succeeded, but not up to my potential and I still think the world actually lost out on my potential as well as me. I’m 57. I went to Nursing School, where I got straight As on the classroom stuff and barely passing in the clinicals. I realized as a teenager that the only people I was going to be in relationship with (and I wanted a relationship, so I could look normal) were those who needed me to take care of them, so I was going to need a job that would pay well and from which I likely wouldn’t get fired because of my “weirdness” (which had already happened multiple times in my young life) because there was always going to be a shortage and it was a career that frequent job changes were actually not that unusual in, and neither was being a working female, if my technical skills were up to the bar. I actually am far too idealistic and intellectual to enjoy the work of nursing (you know, dealing with barf, poop, pee, phlegm, blood, and open wounds). People say, “I could never do that” and I say,”you could if it was between this and homelessness”. People would laugh and say I was too smart to be homeless. HAHAHAA. I learned some skills for passing socially, too: learned to play an instrument so I could hang with musicians, for example, although that sort of fell apart when I gave up drinking and drugs. I mean, until a lot of other musicians did, too. Also I became Buddhist, which actually saved my life. Buddhists learn to take time before reacting. WHEW!! A combination of those things has meant I have overcome a lot of difficulties, which I wouldn’t have had if I had had more support as a younger person….and now I actually OWN a home and am working on an online master’s. close enough.
You’ve got quite a life story to tell. We’ve all passed in the past.
I would have preferred actually succeeding, of course, to just surviving! I finally quit having codependent relationships, which for me has meant no relationships, which turns out to be just fine, actually, but there is still a TON of suspicion and prejudice about single moms. I have never been able to work full time, so I’m not as solvent as someone who actually SHOULD be a nurse. For one thing, I’m not that great a nurse–I miss a lot of the “common sense” stuff and have had to pinball around to find a way to use my credential to get money. I would never have made it without the nursing shortage, but since I CHOSE this credential based on the shortage (and not because of any innate nursing ability), I suppose that’s to be expected. I have been fired so many times! Multiple times a year, and my record is 3 years. I not only refuse to play the game, I almost always have no idea that one is being played, or what the rules are, and I can’t play it successfully even when I try hard! It is always obvious that I am lying, and one of the rules is that you can’t show that you know that. I also never know when I am tired,hungry, stressed, angry, or sad. My daughter has more self acceptance than I ever had (I have had very little, most of my life), but her road is hard too and i feel we are forging a new one. but at least we know it needs to be done! we have both benefitted so MUCH from the Internet.
I’m glad to hear that the Internet has been so helpful, as it has been for so many people of a certain age — those who don’t take it for granted that so much information is available and that so many people share some level of experience with you and are within grasp.
But I also feel how you struggle. It must be so unsettling to “pinball around.” And all that is in the context of knowing (as I interpret your belief) that at some level you aren’t capable. I tend to put it that some of my capabilities don’t match well with a world and society constructed with built-in assumptions about behavior and perception. So I see it more as an incompatibility rather than an incapability. Perhaps it is an effective or apparent incapability due to that incompatibility.
I hope you stay in touch — here, or otherwise in this connected world — at least as much as is can benefit you, perhaps giving you a different perspective or altering your assumptions. This is just an aspiration, that it may be of benefit.
TL:DR summary: passing can sometimes have unexpected benefits.
I’m 69 now, have finally discovered and embraced my autistic nature in the past 18 months, and still learning. In my childhood, of course, autism was an extremely rare and horribly catastrophic illness that you DEFINITELY didn’t want to be identified with, as you might find yourself a resident in the Home for Feebs and Spazzes. No stims, please, we’re entirely normal here. Pay no attention to that six-year-old with a 25,000-word vocabulary who hasn’t mastered tying his shoes.
Sometimes passing has unexpected positive results. I’ve had a lifelong passion for radio and electronics and, like the narrative in Neurotribes, got a ham license in 1964 and found myself at last in a prototypical online community of other nerds I didn’t have to encounter socially. When I was drafted in 1968, I enlisted for an extra year of service so that I could opt for a specialty in electronics. The Army can be autism hell, but if you have to be in hell you might as well try to steer to the less unpleasant parts. (Nowadays a formal diagnosis is a barrier to enlistment, which is another topic entirely.)
For good reasons I barely made it through Basic Combat Training. I was second from the bottom of my cycle, but passed because the cadre were compassionate. After that, everything changed: I have honor graduate certificates for every training course thereafter, especially including NCO training, where they turned me into a leader.
Besides teaching me many valuable things about how successful human organizations work, the taught me how to assume a command persona — to be someone that others will perceive to be a leader and will follow.
I now had a powerful tool for passing. I used it in many ways in the years succeeding, including one way I completely failed to expect.
I’ve had a lifelong passion for live theatre, but it was always for a techie role backstage, fiddling with lights, sound or rigging. In my late thirties, however, I was roped into attempting acting. As I got more roles in professional theatre productions, I found I liked that at least as much as sound and lights. Eventually, I got most of my roles not from auditions but from directors calling to see if I was available for a part in an upcoming show.
Acting can be exhausting when done right. One thing I noticed, though, was that I wasn’t quite as exhausted as some of the other actors, especially on those trying days when you have two or more performances. I felt pretty much as tired out as at the end of any other day. The reason, it finally dawned on me, is that for a passing autistic, every day is a performance, whether in a theatre or not. Creating and portraying a character, who isn’t truly me, is something I have been doing for many years, merely to survive and perhaps prosper in daily life. I’m not really sure now who the “real” me is. Peter Sellers once remarked on the Muppet Show: “There isn’t any Me. I had it surgically removed.”
The wonderful thing about acting is that it doesn’t matter whether you have problems perceiving the attitudes and intentions of others. You know who you are, and the script and the Director tell you who the others are, and you are free to be a neurotypical human who understands all the secret social codes. You enjoy, and get paid for, just doing what you normally do in life, without the hassle of not having the Captain Midnight Secret Decoder Ring.
Can identify so much with this.
Thankyou.
Michael, it is true that as we hone our passing chops, it sometimes gives us the ability to do amazing things. I like the idea of it being a tool, consciously applied, and successfully so due to decades of trial and error. That is far better than having no choice and being clueless, or having no choice because of a mismatch between the person and societal constructs. I hope it continues to allow you to break out and gives you a leg up. More succinctly, break a leg.
‘PASSING?
I’m just beginning to get a sense of this subcultural term ‘passing’. Granted, I only encountered tit in a blog a few minutes ago. The term, not in the least difficult for me to decipher, at least in the way it relates to myself. Though I get the sense that it carries with it, some implication of volition, as if it were a choice to be made. I have read words like, surviving…’how to assume a command persona’, intimations of an awareness; of a long endured apprehension concerning some inevitable reckoning.
Perhaps, it is only due to inexperience, but coming to a realization of an identity that explains a 48-year-old life mystery is, at least to myself, a liberation…
Please, allow me to interject a segue here, to double check my clarity. I think I may be short on a personal context in my relation to this idiom that seems to resonate with that undefinable and persistent question…what is it about me?
When I say that, I feel it is necessary to explain, that I never knew there was such a word in this sense. I only know it as my reality. There is no dissociation. Then again, the realization that I am, most certainly, autistic, is fairly new to me. I have not been officially diagnosed. However, that is trivial to me, I only had to connect the dots and I knew it, and I felt a strange sense of relief.
What started out as a suspicion, something I used to joke about when I would do something so, “autistic”, became a lodestone, which drew me by some inate familiarity with those traits which are superficially inadequate to messure my reality. Although, it makes perfect sense to me. Because, as I said, I am still in the discovery of something that, finally Identifies myself, and I mean to myself, from any thing that is otherwise only a void of perplexity.
Before I stray too far from the matter, this idea of ‘passing’ holds interest to me. For instance, how would someone ever come to the conclusion that, and this is only as I see it, …something that holds such a pervasive influence over the core of my being could ever be distinguished from any inseparable part of my nature?
Has my whole life been an act when it came to the requisite, social aspect of society? I can not honestly claim that it hasn’t, but I can’t really say for sure either.
I do allow though, that it is not at all inconceivable, that my whole life has been an evolving perfection of the stage. One that I believed was a reality common to all… Only I just never got it. Adaptation is instinctive and autonomous. The only thing I ever knew was the certainty of confusion when it came to other people.
‘Why are you angry?’…I’m not…why does everybody say that to me? ‘Why do you say things like that to people?…’say things like what? I would say…. or….Why do you let things frustrate you so easily…?……Why do you have to analyze everything?…I say….I’m not…I just wonder about things that don’t appear to make sense to me.
Those things that don’t make sense to me, I eventually learned to mimic, because there is no other word to fairly describe a pragmatic adaptation, one that is logically deduced to be “normal,” even if I can’t understand why that really is. But yes, liberating, is how the idea presents itself to me.
Like I said though I only just heard this term ‘passing’ so, Im still in the process of analizing it for what it might mean to others. For now, it’s just something that looks like it may serve a place as something more solid than the void…
-Nick
Nick, I can only suggest to think of passing as coping, not as acting. It is a means of survival. Some of us live in this way for decades, unaware of an alternative, unaware of it happening and unaware of who we are. Knowledge doesn’t always carry with it the option to avoid passing. Sometimes we are forced to pass still, to accommodate an inflexible society.
You are/were the greatest, Jim. If that’s “passing,” you’ve set the curve pretty high.
I’ll take your praise at face value, David: I’m good at it. Sometimes. And sometimes at great cost.
It’s not always a choice of do or don’t. For me, at least, it was a choice between do or don’t exist.
Jim, just to clarify. I’m in no position to judge what is “passing” for you or anyone else. All I meant is that you’ve had my admiration and love (as a brother) since we both were barely shaving. Both have only gotten deeper as I’ve learned of your struggles with autism and seen the strides you have made with this site.
I love your comments, David. I wasn’t being critical, just adding depth. Thank you for cheering me on. It means a lot to me.
I was diagnosed at 28, I’m now 33. I tried to pass before then without realizing. I now don’t try as much. It’s too exhausting. The reason I sought out a diagnosis was because I was struggling so much as a new mum. Trying to cope with a baby accentuated all my autistic traits and sensory issues. I was having daily raging meltdowns by the time I decided to get diagnosed. I have much better supports to cope with life now and things are better than they were, mostly. I’m terrified of ending up in that dark place again though. I experienced autistic burnout about 2 years after I had my son. He’s 6 now. I have other physical and mental health issues which contribute to my ability to cope with life. I have never worked full time. I crumble under pressure and stress too easily. I have C-PTSD with lots of triggers whicb exhausts me.
I feel like I’ve never been able to pass very well. I did try when I was younger and undiagnosed but felt very exhausted all the time and once I had my son I couldn’t maintain it any more.
At age 4 my mum took me to a peadiatrician with concerns about my behavior. The list of concerns she had were all autistic traits but back then there was no information about autistic females so it got passed over. My mum was told I was potentially in the gifted range because I had a good memory. She was asked if she wanted to do further testing with me, she declined saying she didn’t want me to be labeled. Ha! Years later I have multiple labels and diagnoses.
The other thing is, it didn’t stop me being labeled with mean names from other kids at school whilst I was growing up. So yeah labels are important for a person’s understanding of themselves I believe.
Kerrilynn, I appreciate how exhausting passing is. When it is happened before any awareness of being autistic though, it simply felt as if life itself was exhausting. Of course, diagnosis didn’t make that all disappear. Life is still often quite exhausting. And, as you say, it is much more than just the autism — the mismatch between ourselves and the rest of humanity — that we have to deal with, as is true for so many people autistic or not. Diagnosis and labels only go so far. So I wonder about the support you mentioned receiving since diagnosis. It would be interesting to know what form that takes.
You are the only person who understands that life was endured. I never had dreams. Just getting through the day was as far as I could look. I loved that paragraph that started “The autistic survivors of these lost generations need a different message: you endured.” Spoke to me. Gave me hope. I am a 54 year old & glad to know there is still life left
It sounds like you understand enduring well, Paula. It’s odd, but just the knowledge that I have endured allows me to ratchet up the quality of my life, in some dimensions at least. Perhaps the knowledge of enduring is what it takes to add an increment of optimism about surpassing mere survival. There’s still plenty of life left for us to do more. Still, finding that path borders on magic.