Autistic people are chronically targets of bullying, discrimination, ableism, domestic violence and time and time again are being murdered by the people who are supposed to take care of them. If a person has the ability to avoid all of that by hiding what makes them appear to be autistic, I think they are going to choose to do so until they feel safe enough not to.
By Jocelyn Eastman
After more than 31 years of living a life that has been described as others as unbelievable and interesting, it all finally started to make sense (for more information, please read my piece with the Art of Autism, Dear Joc: You Are Not Meant To Be A Chameleon). I had just had a massive two week meltdown, and when my doctor put me on medication to help deal with my “depression”, I had a major psychological reaction that put my life in danger…because I was not depressed. Eventually, I ended up sitting with Lynn, my new mental health medication management practitioner.
Prior to my massive meltdown, I had finally found Susan, a counselor that I felt comfortable with, who believed and listened to me, and when this epic breakdown occurred, she insisted that I invest in another level of support. I filled out what felt like mountains of paperwork about my family, my sensory issues, my devlopment and so much more. It took me more than an hour to fill out all of the information about my past, behaviors and methods of thinking to ensure that I was appropriately diagnosed. I had never filled out information so in depth in my life.
After reviewing the paperwork, Lynn and I had an in depth face-to-face interview. My twin sister, Jessica, had been diagnosed as PDD-NOS as a young child, which we now know to be a part of the autism spectrum. Our conversation began to zero in on Jessica’s diagnosis and on my own written statements. After a long discussion, Lynn rocked a little bit in her chair, tapped her pen on her desk, looked directly at me and said, “Didn’t anyone tell you that you are on the spectrum too?”
It very much seems that the dominating dialogue of adult diagnosis is of parents who find out that they are autistic once their children are diagnosed. The dialogue seems to go like this: my child needed help, so I took them for help. They were diagnosed but I knew on some level I could relate to them so lo and behold I was diagnosed too. I was SHOCKED! I knew I was different, but I was so shocked!! WOW!
For me, it was not at all a shock. In fact, for the past 10 years I had strongly suspected that I was autistic and at every turn I was told I was wrong about it. I was wrong. I did not look autistic, I did not act autistic and therefore, I was not autistic. ‘There is just nothing wrong with you,’ they would say (implying that being autistic should mean that I should present as damaged, blah). I felt vindicated; relieved. My life, my feelings, my experiences and my thought processes not only made sense, in that one moment they were also validated.
How did so much time pass without a diagnosis? How is that even possible? In the very beginning, there was a hugely noticible difference between Jessica and myself. We were both developmentally delayed. We both required therapies. Jessica just required many more and her behaviors were much more challenging. I passed more easily. I acted “more normally.” Let’s not forget too that this was 30 years ago, when PDD-NOS was not included as an autism diagnosis and the diagnostic criteria was markedly different and filled with things like a lack of responsiveness to other people (According to my mother, my sister was very affectionate, and so she was denied an autism diagnosis on that premise. Even though the onset for PDD-NOS was after 30 months of age and it was clear well before that that Jessica was not developing at a typical rate, no one listened to my mother and that was the diagnosis given. Food for thought, my sister is a very affectionate person while I have a lot of difficulty being affectionate). So the child who was struggling even more had a diagnosis and the child she was being compared to was left alone simply because she was better off.
Basically, I passed.
In the past, I have written for Autism World Magazine about passing, but it is absolutely worth going over again. It is a dangerous concept to the mental well being of autistic people, especially those who fly under the radar and girls who are often influenced to be socially compliant. Passing is the idea that an individual from one social group adapts behaviors to be accepted as a member of another social group. For me, not knowing I was autistic growing up, it was pretending not to be strange so that maybe the not strange kids wouldn’t torture me every day, and that maybe some of them would even be my friends. I became a professional at passing because my family moved a lot due to my father’s career in the military, where passing would have been necessary whether I was autistic or not. It also meant putting up a wall and never revealing too much, even to my family, who had already designated my role from a very early point in my life. Even now, as I am writing this, there are family members who refuse to believe that I am autistic.
The positives of passing are pretty straightforward. Passing means access to spaces that you wouldn’t have if you weren’t part of that particular population. For autistic people, this runs the gamut. Access to friends, access to academic opportunities, access to respect, access to having what you say being taken seriously, even access to employment or removal of barriers to employment. If all a person needs to do is act like a person they aren’t and pass so that they have the opportunity to thrive, it makes absolute sense that people would do it. Passing also means that you are not a target. Autistic people are chronically targets of bullying, discrimination, ableism, domestic violence and time and time again are being murdered by the people who are supposed to take care of them. If a person has the ability to avoid all of that by hiding what makes them appear to be autistic, I think they are going to choose to do so until they feel safe enough not to. The majority of us don’t feel safe.
The negatives of passing are insidious and damaging. Passing undermines who we are. Passing causes irreparable damage to our psyche, because we know that unless we put on an act, who we really are will not be accepted by the vast majority of people. We are portrayed as broken and as needing to be cured. We have had people tell us to our faces that they would rather have a child die of a preventable disease than to have their child become autistic. We have had people tell us that they can’t wait for prenatal testing so that people like us can be aborted, and that we won’t have to be burdens anymore. All the while, we are expected to accept that others feelings about autistic people are acceptable and understandable, while being shunned if we do not fall into line with acting as those who tell us these things wish us to act, without understanding why it is we need to, say, stim.
Passing is also exhausting. It’s just exhausting. It’s like being on a perpetual television show that no one alerted you about. Every once in a while, a new director yells, “Cut!” to let you know what new lines you have to learn because someone rewrote the script without telling you. If you disclosed that you are autistic, the show turns into, “How To Patronize the Autistic Person.” By the time I get home at night, I feel like I just gave the performance of my life, because I literally just did. I didn’t lie, nor was I disingenuous, I just couldn’t do the things I would normally do to regulate and recenter myself.
By the time people like me have come to the realization that something just isn’t right, we have passed so well that no one believes us! Our striving to do what everyone wants autistics to do, be as normal as possible, ends up hurting us and keeping us from getting the help we need. “But you don’t look autistic,” “You are so smart, you can’t be autistic,” “You can talk and you look at me. I don’t think you are autistic,” “Isn’t autism a boy thing?” “You don’t run around naked throwing food and self-injuring, how dare you call yourself autistic????”
Passing simply means that I act as non-autistic people do to access the benefits of their spaces and to avoid being targeted for being autistic. It doesn’t mean that I don’t do the things autistic people do. My ability to pass is SO GOOD that people automatically assume that.
Maybe some readers out there have squabbled with an adult like me about not being like their child. Adults like me are a resource that can’t be found anywhere else. The person who told me I don’t run around naked doesn’t know about my allergies to just about every laundry detergent, because she didn’t give me the chance to talk about it, and what it is like to go through a workday or sleep on freshly washed sheets…and choose not to wear clothes at home. She also didn’t give me the chance to talk about my self-injuring behaviors, which are borne out of anxiety that I can’t stim out of my body while I am at work.
That might be the biggest pitfall of passing. After all of these years of being told that we have to strive to succeed at being normal by non-autistic people, they have now turned around and decided that our experiences are no longer valid.
***
This article is dedicated to my dear friend and colleague Iain Croft, the founder of Autism World Magazine. We never had the opportunity to meet in person, but we did work together on articles for the magazine, and had opportunities to discuss autism advocacy and life. Without Iain’s influence on my writing, I doubt people would be receptive to it. In Iain, I was able to find another lost autistic; a passing, undiagnosed adult who wasn’t passing anymore because all of the rules had changed. Our internal conflicts are quite kindred, and this story, in particular, is in his honor, as it was not only the last one I was able to share with him, but is truly the one that explains why we were always on the same page, even though we had never met in person. Rest in power my friend.
My husband “loves” when people try to argue I’m not Autistic. I remember his stepmom going into a “well, I mean REAL Autistic. Like, non-verbal, with self injurous meltdowns, and…” and he replied with “I’ll let you know when you get to something that doesn’t happen in our house. She’s just very adept at hiding it in public, cause you have to be.”
At least the hubs gets it, right?
This article has some basic unsupported assertions and presumptions about autism and caretakers of the autistic.
“Autistic people are […] time and time again are being murdered by the people who are supposed to take care of them.”
This falsely implies that this dynamic is common for autistic people. Are there data to support this assertion? What are the murder rates of the autistic v. the non-autistic population? Or is this an opinion based on one person’s reaction to histrionic media reports.
” If a person has the ability to avoid all of that by hiding what makes them appear to be autistic, I think they are going to choose to do so until they feel safe enough not to.”
Except for those who are on the upper fringes of autism functionality, how real is it that autistic people are capable of hiding or disguising their autism? And if this is truly some significant dynamic across the entire spectrum, how exactly are such autistic people learning how to accomplish this improbable feat?
“The majority of us don’t feel safe.”
Really? Is there data to support this broad stroke assertion? I doubt it. It is highly irrational to present the experience of ONE PERSON as typical of a population. I would like to remind readers that any one person with autism is only an expert about his or her situation, given how autism differs from person to person. One person’s experience can make for an interesting anecdote. But one anecdote, or even a thousand anecdotes does not necessarily make for a true picture.
I would assert that almost all caretakers of autism are not murderous monsters, and most autistic people are not victims hiding behind behavior masks peculiar to the abilities of the higher functioning. Such distorted misanthropic portrayals of autism, while perhaps artful, are not so helpful.
Hey Lenny,
I’m new to the whole autism conversation, but this post displays classic signs of autistic thinking (black and white, literal, perfectionist, by the rules, not willing to let something rest when you could argue it even if it damages feelings or relationships). All the things I love to do too.
It’s not that any of your points are wrong – just no one is going to listen to you if you present them that way. I hear you on the whole “care takers murder people” part the author breezed through, and I’m going to do my own mini search on that sometime just to rule it out as a real problem I should worry about.
This is an opinion piece. I suspect you are not in the group the author is talking about of people with autism who have the ability to socially blend and “pass” as neuro-typical for varying lengths of time at-will based on this writing sample. I am in that group.
It is utterly exhausting. I came to this site tonight because I had an exhausting day with 8 hours of “people” time. I nearly made it though but had a little social screw-up at the end with a work friend that upset me because it made her uncomfortable (shes introverted by NT). I went a little “academic” once in conversation but tried to joke when I noticed, pull it back and wrap it up quickly. I was talking with a professor at the time in his area of interest but the rest of the group were admin types who were less interested evidently.
It really is the performance of your life. I never knew that’s what I was doing. I always felt like a failure because I had so few skills for so, so many years.
I looked at my schedule tomorrow, determined to never let this happen again so I could schedule more time to regroup and recharge, but it’s pretty full too… I can wear my new noise cancelling headphones to work outside between events and focus on practicing the skill of keeping my mouth shut to conserve my energy. sigh. Thanks for writing this. I feel very similarly.
Well penned, though I take Lenny Shafer’s point about histrionics. But Ms Eastman is quite right about high-functioning autistic people – to make our way through life, we do have to actively pretend to be characters that we aren’t, in order to gain and maintain some social and professional credibility. It is exhausting, though vastly easier in familiar situations than new and unfamiliar ones. The latter are extra scary partly because our weakness in executive coherence means we don’t easily re-apply learning from familiar contexts to new ones, and then on top of that, cracks in our ‘face’ can show when trying to act normal in the unfamiliar context. It is nothing short of amazing how different people’s evaluations of me are when meeting me for the first time. Depending on how well I manage my act and how much effort I am prepared to put into it, newly introduced people can perceive me as anything from extraverted, empathic, and extremely articulate to shifty, scary, soppy, or anxious and hypochondriac, or just weird.
I have a highly fractured persona, which I think is not uncommon for HFAs. People who live in my street have a completely different notion of the kind of person I am (reclusive, mute, territorial and paranoid, obsessively houseproud nudist) compared to my work colleagues (analytically minded technical expert with three university degrees); my closest friends know yet another side of me (dizzy, sensitive, hygiene-obsessive and artistic), facebook contacts a different concept again (outspoken left-wing political and economic reader and thinker), and then there is stuff I keep completely to myself (repeating certain words and nonsense sentences to myself hundreds of times a day every day, and a completely involuted, masturbatory sexuality).
Dear Ms. Eastman,
My name is Maya Radhakrishnan, and I am a 10th grader at the Roeper school. I am doing a school project on the challenges and effects of passing for neurotypical with autism for a civil rights class. For this project, I am required to “get proximate” to the group I am learning about; i.e. I need interviews.
I personally have ASD, but my teacher won’t allow me to just interview myself, so I am trying to find other people to talk to. I’ve read several of your articles, and I was wondering if you would allow me to send you a short questionnaire about passing with autism. I would really appreciate your help
I guess this also applies to anyone who passes for NT and has read this comment.
My email address is [email protected]
Hi,
Parent, here, of adult children on the spectrum. They struggle with this very issue. And do not want me to say to any new person in our life that they have grown up with autism/pdd/atypical autism and a slew of educational services. However, both of my younger children excelled in academics and are gifted. And my oldest daughter, who was severely learning disabled (PDD), turns out to be excellent in accounting and programming. My son is a web developer by profession and is employed in the tech industry, and my youngest dropped out of grad school history major, due to family issues (dad’s cancer) and not fitting in (my opinion).
My psychiatrist says that I am likely on the spectrum, though never formally diagnosed. But considering my personal history, I would say he is right. Most people don’t notice, except that I also don’t fit in. One of the attorneys at our office compared me to another attorney in another office who has the same mannerisms and eye habits that I have. So he is aware. I don’t know if it has saved my job or made it worse. Nevertheless, my skills likely keep me here. I also “pass”
This issue of passing is a struggle in our life. But I wonder how this will affect my kids should they ever marry, date, etc. But for now, I have been warned not to share this information with others. My youngest daughter says it is a threat to my son’s career. And hers.