I am an actress. Ever since I was a little girl, I have imitated other people. Like a mirror, I could reflect was what was seen and spoken to me. I mimicked words I heard and actions I witnessed. To those around me, I appeared normal, but after spending some time with me a disconnect would become apparent, revealing that my speaking, moving being was not imbued with the same type of inner self as those around me. I misunderstood, seemingly willfully, basic human communication. I was ignorant of the norms of social interaction. Inside this realistic shell, something essential was missing, or broken, or, at best, unrecognizable from what was inside everyone else.
I was verbal and literate from a very young age, and dramatic. I loved to read and act out fantasies, and to imagine them playing themselves out in my otherwise mundane and often frustrating existence. I wasn’t like other kids my age, and they made fun of me and didn’t want to be around me. I lived in books, relating to every misfit I read about, who would come to some realization by the end of the novel and suddenly not be such a misfit any more. I waited for that realization to happen to me. I didn’t want to be a misfit, that odd, weird person no-one wanted to be friends with.
The realization never came. By the time I was in high school, my peers actively disliked and avoided me. One girl once said to me: “You always know how to say the exact wrong thing!” and stormed off in tears. I felt horrible, and horribly confused. Why had it been wrong? What was the right thing? I must be doing something wrong; no-one ever stayed friends with me for any length of time. As things got worse, I grew stiff and shy. I always spoke up in class – teachers never seemed to find me in the wrong – but around other people my age, I said almost nothing.
I went to college in the early 90’s when goth was coming into the mainstream. I loved the music and the culture; they matched my increasingly negative inner monologue perfectly. I found a group of people who did not think I always said the wrong thing; they thought the world was a hopeless dystopia and acted like it, which was considered “being real.” (Which, I thought, was all I’d ever done, anyway. I never lied; I could barely manage to soften the truth, hence the lack of friends.) And yet still, I was missing something. Women tried to make friends with me but I couldn’t see it. I thought they just felt sorry for me. I didn’t know what they wanted, or what they meant.
I never seemed to know what anyone meant.
I discovered that alcohol solved a lot of those problems. It dismantled my reserve and suddenly, people thought I was funny. I found a social group – freaks, we called ourselves – that took pride in purposefully rebelling against social norms. I also found I could consume large quantities of alcohol and hold my own – yet another skill they valued. But I took it too far. I fell into addiction, relentlessly chasing that feeling of belonging, into more alcohol, and pot, and harder drugs; into illegal after-parties in dangerous parts of town; into relationships with controlling men who told me what to do, a relief, since I never seemed to know. My old group of friends fell away and I was surrounded by drunks, addicts, and drug dealers. I started self-destructing with vigor. I had never been very good at being a good person, anyway. Might as well take it all the way down.
I caught myself, close to the bottom. I was tired and it wasn’t fun anymore. I quit smoking, drinking, and all the drugs, and dumped the numbers in my phone, cutting off everyone from that life. I started looking for a new person to be and another group of people, and was drawn into a group of local singer-songwriters. I threw myself into the effort of reflecting them, the things they said to each other, the things they did for one another. I was much better at it, by this time. I had built up a volume of correct responses for various social situations. I was a good singer, wrote music, and was funny on a microphone between songs. People told me I should move to New York or Nashville, that I needed to network so I could build a career.
But I couldn’t. I didn’t understand networking; it seemed like transparent self-aggrandizement. I also still had difficulties with groups of people. Without alcohol, parties exhausted me, and live music was painfully loud and overwhelming. Few artists held my interest; I grew fidgety and tired watching the others. And the thought of moving to another state, all by myself, was terrifying. I still relied heavily on my parents to take care of me; I didn’t know what I would do, so far away from them. I couldn’t imagine it, and so I never left.
The music career fizzled out and I started working with animals as a veterinary assistant. While people were completely opaque to me, animals were an open book, so I thought work around them would help me feel more normal. It went well for a time; I was good with dogs and cats. They calmed me, and so I calmed them.
Unfortunately, working with animals still means working with people. At one point, my supervisor pulled me outside. She said no-one wanted to work with me any more. It was my attitude, she added, thinking she was being helpful. But I was at a loss. What attitude? I didn’t think I was behaving any differently. I started to cry. She told me to take off the rest of my shift, go home, pull myself together, and come back for my next shift in a couple of days.
I resolved to be better, and I was, for a few weeks, carefully curating everything I said to remain “positive.” But I couldn’t keep it up. I would get tired, the facade would slip, and my normal behavior was off-putting. I left for another animal clinic.
And eight months later, another after that. One, I almost made it a year. The next, I didn’t last the summer. Something wasn’t working. Something about me was still wrong.
I buckled down. I simply had to get better at this people thing. I thought I was just lazy – other people managed to be naturally sensitive to others, so why couldn’t I? I just needed to apply myself. I started studying human behavior closely and I delved into the acting like never before, some on stage in community theater, but even more so in real life, with still another new group of friends. I came to realize that people lied to each other, all the time. They pretended to be interested in other people, to be happy for them, to agree with them, even when they didn’t. They expressed sympathy for things they did not necessarily care about. They made a point of making other people around them feel good about themselves even if it necessitated a blatant disregard for reality.
I didn’t understand it, but I could imitate it. I did want other people to feel good about themselves; I didn’t want them to not want to be around me. I became much, much better. But at a cost; it was exhausting. I couldn’t keep it up for very long; not enough for a forty hour work week, or, going back for a second bachelor’s degree, a full load of courses. But I found a job while I was at school, caring for animals in the animal research wing, where I saw almost no people at all. It is the only job I ever kept for more than a year. Just me and a few thousand mice. It was perfect. I loved it.
My professors loved me; I was bright, articulate, and insightful. My classmates were friendly with me and seemed to enjoy my company despite the near twenty-year age difference. Things were working, finally, for the first time in my life. It took me five years, but I graduated with honors.
Then I started a graduate program. The social aspect was not a problem, mostly because graduate students are too busy to socialize. But I foundered under the deluge of course work and bench demands. The autonomy immobilized me. I couldn’t put an experiment together from start to finish, never mind a slate of them to test a theory. I tried to get my student mentor to tell me what to do, and he finally said, more gently than he probably wanted to, that this was graduate school and I needed to figure these things out for myself.
My classes were worse. I couldn’t understand what was being asked of me, couldn’t assimilate all of the information, couldn’t prioritize it, and couldn’t figure out what I was supposed to learn. As an undergraduate, I had simply learned everything, more or less. This strategy fell apart in graduate school; there was far, far too much. My first exam came back and I had the lowest grade in the class.
I went to see the professor, who said, “I didn’t understand your exam at all. You didn’t answer the questions I asked.”
My other courses were no better, and on the bench, I had only produced one piece of usable lab data over the entire semester. Three weeks before finals, I underwent a battery of tests, desperate for some explanation as to what was wrong with me.
One week later, I had a diagnosis. Autism Spectrum Disorder Level I, a high functioning cohort of autism that includes those with Asperger’s syndrome. And me.
My life up to that point had been an impenetrable entanglement of failures, frustrations, and misunderstandings. It now settled into place like blocks in a preschool puzzle. It’s not my fault. I kept thinking. It’s not my fault. I did the best I could.
I was relieved. And so, so angry. How had it been missed? How many therapists, doctors, educators, had simply diagnosed me with depression, told my parents I was just exceptionally intelligent, bored in my classes, that some children had difficulty fitting in, that I was otherwise normal? Normal? I was anything but normal.
I had been trying, wildly unsuccessfully, to force my autistic brain to operate under a neurotypical framework that it was immensely ill-suited to and no-one noticed. I had floundered, apparently invisibly, for four decades. All my problems had been laid at my own feet; I had been called insensitive, accused of not paying attention, not concentrating, not trying hard enough. None of those things had been true, but a lifetime of accusations had shredded my sense of well-being. I was now not just autistic, but horribly anxious and depressed, all the time, unable to reconcile my inner self to the outward impression I made.
No-one could ever tell I had autism. Not even my graduate advisor, who figured I just couldn’t hack it and pushed me aside. I dropped out after one semester. To this day, he does not know.
My acting, ironically, was now flawless; at some point, my disguise had become complete. No-one withdrew from me any more. The woman who had administered my psychological exam wrote that I was “warm and easy to establish a rapport with.” My few friends adored me. No-one had – has – any idea whatsoever that I am a faker, a sham, a walking performance piece entitled “Socially Habituated Human.” Or that maintaining such a performance requires an immense expense of mental energy that was, and still is, extremely taxing.
Outside of work – I am back working with animals, again – I have little energy left over for socialization with friends. Going to dinner with a group is impossible; there are too many people to try to interact with at once and I can’t focus on the right ones at the right times. I can’t stay at a party for more than an hour, and I am zombie by the time I leave. But I can’t turn the performance off to save energy any more; it’s now a permanent part of my demeanor.
I’ve wondered if it might be a protective mechanism, to shield me from the ostracism I suffered so often growing up. I’ve wondered if I’ve somehow pushed my brain into making new connections that it wasn’t physiologically designed to make. Whatever the reason, as soon as I am around another person, I switch on as though triggered by motion sensor. The smile. The greeting. The interest in his day, asking after her son, their weekend plans. I can’t not do it. Unless I am alone.
And so I have to live alone. I can’t do this at home, too. My only roommates are pets, cats, and they are perfect; quiet, accepting creatures, content to curl up next to me and snooze or groom themselves while I write or watch TV. (But not while I play guitar. Everyone is a critic, it seems, even animals.)
I know my limits. I have become that odd person I had so fervently wished not to be as a child. I joke with my co-workers about my absent-mindedness, my OCD, my need for repetitive activities. Everyone knows about me and my sunflower seeds. Wait – are you eating the shell, too?
I hoard bubblewrap. I pick through the empty boxes after shipments come in and stuff it in my tote bag so I can pop it in my car when I’m stuck in traffic. My friends know that when we go out to dinner, I have to sit with my back to the TV so I can pay attention to the conversation. My niece knows, too.
“Your aunt has a lot of little things she needs,” I said to her once.
The thirteen-year-old rolled her eyes and sighed. “I know.”
I resent it sometimes. For all of my gifts, the intelligence, the writing, the acting, the music, it makes me sad that I am consigned to walk around in the perpetual pose of a very good guesser. I never did learn to read people. Close friends and my family I have been able to study, the way I studied philosophy or chemistry. I have learned what their tones of voice mean, and the indications that underlie subtle shifts in their facial expressions and postures. But I can’t gather that much information on everyone I meet. I just have to rely on what I know intellectually is most likely to be appropriate in a given situation, toss it out while appearing as sincere as possible, and hope for the best.
And what frustrates me more than anything is that no-one has any idea that this is what’s going on. If I do make a mistake here or there, people are too polite to mention it. At work, though, I am always playing catch-up. If I am too distracted, focused on some task or another, and my voice will turn taciturn, making me sound unfeeling or rude. I still struggle with understanding my mistakes, made worse by my inability to use the information provided therein to avoid them in the future. Workplace politics are completely beyond me. Even though I have been open with them about my autism, they don’t see it, and don’t perceive what they can’t see. I am held to the same standards as a neurotypical person, with the same consequences if I slip up.
No sees the constant mental calculations involved in everything I say and do, the herculean effort I must exert to stay in the here and now, to respond to those around me in a socially acceptable way at all times. I can’t allow my mind to wander, ever, unless I am alone. And it usually doesn’t. I’ve been doing this for a long time; it is pretty well baked in.
I was talking to a close friend, who asked about whether I do it around my family, turn this puppet on that I manipulate through various social situations. And I don’t think I do, or at least, not to the same degree. But I also feel a lot of love and sympathy for my parents, who had this alien creature on their hands for so long and are just now coming to understand what she wants and needs. Plus, Momma Ape still isn’t doing so great, physically. The least I can do is put a lid on it around her; she’s having a rough go already. Poppa Ape, probably more worried about her than he cares to admit, also doesn’t need to navigate excessive layers of my crazy right now.
I can be myself around TNC Ape (my sister), but I now have a thirteen-year-old niece whose only exposure to autism is probably the weird kid in her class who wears too many sweaters at once and doesn’t talk to anyone except to announce at various times that he is able to perform some task or another. She already knows her aunt TG Ape is weird; I do find myself acting around her.
So yes and no, and still, only comfortable alone. That’s pretty much it. Although, I can confidently say that I don’t perform for my pets. Or my patients.
It’s nice, being alone with the patients, just me and someone’s beloved dog or cat, in those brief moments when I’m waiting for another nurse to finish her task so we can take an x-ray or take out his sutures or some such. It’s the best part of my day. I sit next to him, hold him close, bury my face in his fur and tell him it’s going to be OK. And sometimes, I’ll feel him relax a little and lean against me while I rub his coat. For once, I am with another creature, just as myself, and we understand each other perfectly.
Then the other nurse comes in, the actress reappears, and we get on with the rest of the day.
Last November, my son was officially diagnosed with autism.
I think that learning that he is neurodivergent has helped him understand some of the challenges he’s had in the past, and he has found ways to adapt.
After transferring from a private unschooling school two years ago (at his request,) he got straight A’s at the local high school last year, and his teachers all love him, because he asks thought-provoking questions instead of just parroting back what he’s been taught. This is especially cool, because in elementary school, he was constantly getting in trouble for asking too many questions.
For the first time, he has a group of friends he hangs out with, and he’s even dating a bit. He has learned to handle stress and advocates for himself when he’s feeling overwhelmed and needs a break. I’m so proud of him! 😊
My comments are going forwards in time but backwards on your blog as I Special Interest my way through your archives.
This one is especially resonant and poignant. I am neurodivergent (probably), however, the emotional-connection-appropriacy part of my mask has been more effortless than what I seems to be most autistic experience, since around 8 or 9. I got my 10,000 hours of mastery in masking out of the way early. I am a former child actor (I am also a queer linguist, educator, and former sex worker). As a child I worked professionally from the age of 5 to 15, when I had spinal surgery. I started acting at 4, right at the tail end of the language window closing. Because I’ve done a lot of early childhood language acquisition study, I know about early childhood immersion schools. I had one of those, essentially, but for accurately recognizing and producing correct reactions for Nuerotypical Human Emotions. It was also heavily incentivized, aka whenever I did well I drew income and insurance that allowed my parents to afford the surgeries I needed. This also mirrors the way I learned Neurotypical Heterosexuality, which was by becoming a sex worker, or the way I figured out my gender identity and sexuality, which was by becoming a queer theorist.
It is an especially thorny part of my Autism Paradox.
Thank you for putting your words out. Thank you.
Just for the record, TGA does not recommend becoming a sex worker (not that there’s anything wrong with being one) as a method of self-discovery.
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Oh my god !!! Today just now I found your blog on Washington post read it – came here and I can’t tell you what you’ve done for me. I am 20 years old and I week ago I found out about this word “Autism” and when I researched about it , like you said everything fell into place like the pieces of a puzzle . I have struggled with everything you said, did all the same effort all my life upto this point thinking that one day I will not be a misfit, one day people will stop misunderstanding me , calling me stupid and not trying harder,over emotional and over dramatic, attention seeker, irresponsible, rude ignorant,lazy ;too much sensitive to smells, loud noises etc and many more things. I knew always that I don’t behave the way I do intentionally ,to appear like this, no one would because I wasn’t dumb and quite extraordinary in some things,but still I have been called and insulted by these things again and again even by my closest relations and friends. Sometimes I felt all this effort is useless and nobody will ever talk to me normally like they do with other people because I can’t. But now I “know” now that it’s “useless”. I was quite happy knowing that I finally can stop trying to make myself who I am not and angry too that why I didn’t know this earlier but reading your story has released me from that anger. Thank you for sharing and can you please tell that how you coped up with being still that “actor” you play in front of other people, did you like still tried too much to appear normal or it became easier to pretend( because I know we can’t be ourselves but going outside is playing a high intensity chess game, trying to figure out your next move while defending yourself and just constantly thinking about what’s going on etc, it’s just too exhausting, although now I am adjusted to this process but still I would really appreciate some advice 🤗
Thank you so much for reaching out and sharing your experience! I’m so humbled and honored that my article helped you so much.
You aren’t the first to ask how I cope with masking all the time. I wish I could tell you that it got easier or that I was able to do it less now that I was “out.” I haven’t found either of those to be the case for me. I can say that now, after 25 years of practice, it happens more automatically. But as far as the psychological toll it takes to pretend to be someone else all the time–that never gets easier. In a way, it gets harder, because the more effective my masking is, the more my true self is hidden, and the lonelier I feel.
I started masking long before I realized I was autistic; like you, I thought something was wrong with me that I had to fix. By the time I figured out I was autistic, I was too far down that road to turn around, and the pain I suffered being bullied and ostracized growing up was so awful that I’m not sure I would have turned around even if I could.
But I can’t say that I think all autistics should do it. It’s definitely a personal choice, and there are pros and cons to each side, masking and not masking. I feel like the payoff of from masking, the connections I make and the relationships I have, are worth the significant psychological toll of always having to hide my true self. But not everyone agrees, and I have to admit that it I have paid a pretty steep price, and still wonder sometimes if it was the right way to go.
Also, as far as friends that really know me and appreciate me for who I am, that amounts to about five people, including my significant other. Everyone else gets the mask and gets to stay at arm’s length, for two reasons. First, someone I have to mask around is firmly in the acquaintance category. Second, the less personal I get with them, the less likely it is that I will mess up, say something that I didn’t realize was hurtful, and have to go through the all-too-familiar process of disbelief and rejection.
I don’t know if I fully answered your questions but I hoped this helped a little! Stay strong! Best, TGA
Thank you 💖 this really does help and I do understand that the situations and life is different for every autistic person considering their family and friends relationships but the core problem is the same for everyone and that is we were born different than everyone and we have to live with it, no matter how hard it is and if people do understand or not, the person who will ever get us is our own self and sometimes our pets😉 in my case my parrot,( she is very understanding.)and thank you for sharing your story, you really give me hope.🤗
Just found your blog.
I, too, am late diagnosed autistic – even later than yours (provisional diagnosis aged 59, still waiting at age 61 for full diagnostic assessment. I am in the UK so I am waiting for a free NHS assessment.
It is ****** hard living with all this, and both my parents are dead and gone over ten years ago. Family are used to my outward persona, and seem unable to accept, as I am learning to accept, the real me.
Nevertheless, knowing I am Aspie is actually very liberating!
interesting read, a mirror in a way.
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