Masking My Autism Made Me Sick

My Missing Words by Sarah Jane Cody

“I feel too much,” I confessed to Noel early on in our relationship. I had no other words for it, but it felt important, like maybe I should try to warn him. Shortly after we began dating, I lay down on the ground outside a coffee shop unable to explain the intense, dizzying sensations that overwhelmed me.

I had felt cramped and pressed-upon inside, the lights too bright, the espresso machine too loud, the people too—well, too much. Besides that, we were having a disagreement. A passionate debate about existential philosophy—you know, ordinary couple stuff. From Noel’s perspective, the situation appeared odd, even slightly suspect: What kind of girl lies down in a parking lot because she’s upset about ideas? 

It did not register to either of us as a medical episode. But I had temporarily lost the ability to speak, and so, I did not respond as he pleaded for me to, please, get up. 

“I’m sorry,” I managed, after a while. “I just . . . need a minute . . . I don’t feel well.” 

Similar instances of dizziness, wordlessness, or other physical symptoms in combination with my emotional distress had mostly only occurred with my family before and had, easily enough, been brushed off. It’s not like my parents didn’t worry about me—they were loving and attentive—but they were as much at a loss to understand my behavior as I was. My embarrassment and confusion at how out of control I felt meant I made little attempt to explain myself. I think the familiar narrative of a kid acting out—being “dramatic”—gave my parents at least some comfort, the possibility that this was normal, a phase, and would therefore pass. 

I could tell Noel none of this, given my difficulty speaking. I only knew that if I rested, I would recover. Graciously, he stayed by my side. He didn’t understand, but he stayed.

Even at 19, his genuine willingness to understand set him apart from other people. I’d never had a boyfriend before. I learned from an early age to attempt to hide my differences and was terrified of letting anyone in. 

One of the few journal entries that survived my shame-filled purges reveals my overbearing sense of responsibility as I debated whether or not I could “allow” myself to date him: 

I really like Noel, but I can’t put my burdens on him.

I hurt without meaning to.

For almost four years, I had also battled a chronic illness that evaded medical diagnosis. Persistent pains, continual fatigue, nausea, and a variety of mysterious, hard-to-explain symptoms vied for dominance of my body. After countless tests in which my body was probed like an alien’s resulted in nothing, my doctors had one-by-one given up, dubbing me “overly sensitive,” as if I was merely imagining my symptoms. Or worse: as if it was my fault.

During that period, I became prone to wild meltdowns and panic attacks—though I did not know to use either of those words back then. I felt wholly responsible for the toll on my family, but I continued to beg them for help because I didn’t know where else to turn. My need for help exhausted them. 

In between journaling my anxieties about Noel, I jotted a date I desperately awaited to see a distinguished specialist. 

Have hope.

My mom, who had picked up on my feelings for Noel and knew how rigid I could be, counseled me: “You’re just deciding to date, not getting married.”

Well, Mom, we did get married, I think now, feeling secretly proud that I was so discerning. 

But the truth is, it sometimes frightens me that I was so cautious I nearly missed my chance at a love that is beautiful beyond what I could’ve imagined. 

“Wait,” I say, rousing from a nightmarish daydream imagining all the possible me’s who never made it to where I am now, the me’s who maybe didn’t make it at all, the me’s who never found out the truth. 

The lie that I am too sensitive has been told to me for my entire life. The implication is: If I would simply stop being so sensitive, I would be fine. There is a contradiction herein: the claim that there is both something innately wrong with me, and nothing is wrong at all. I am the cause of my own wrongness.

I never cared much about fitting in as a little girl. When kids my age came to my house asking to play with me, I would often sigh and ask my mom, “Do I have to?” I found most other children to be frustrating, bewildering, and loud, and I often preferred to be alone, though I did love my two siblings. During grade-school recess, I liked to sit quietly on the lone picnic bench near the teachers, until the teachers told me I was no longer allowed to sit during time meant for activity. I proceeded to spend the time walking in circles around the fenced perimeter of the play yard, avoiding the central chaos. When the teachers, performing rescue, found another quiet, bookish girl to be my friend, I embraced her as one of my own kind; we walked circles together.

What I cared about was being good. I cared about staying safe. Seemingly a million invisible rules governed how a child should behave, some of which I had managed to pick up on, but others I sensed I had not. These rules lay in wait to suddenly be wielded, usually by an adult, but sometimes by other children, with punishing tones. Worse, the rules made no sense. 

Looking back, adults in particular have a terrible habit of labeling as “good” what is merely convenient for them, of painting as “good” what is really just their standard for normal. The rules dictated that I hide. Not just my sensitivity, but my essential being in the world, the strangeness of my mind and social bearing, how my body wanted to move in space, the songs ever brimming in my throat. I hide so automatically that even now it pains me to write these words. My first clear memory is of hiding. 

The circumstances of the memory—the house we lived in, and my awareness that the neighbors recently moved away—put me at age four. I am squeezed into the nook between my bed and the wall, rocking and biting my arms. It’s important that you understand I am not biting out of a desire to harm myself but, rather, because the sharp of my teeth pressing into my flesh is soothing, and I’m feeling a terrible kind of pain, a pain I will only many years later identify as sadness. I know, though I don’t entirely understand why, that I must not let anyone see my behavior.

Throughout my life, I have often lifted this memory from my trove and wondered at it. Why, of all the things my brain might have latched, did it keep this one? Why did it feel so important?

I had no fear of anyone walking in and discovering me, seeing as I was well-concealed. If one of my parents were to open the door, I would have had time to compose myself before coming out from behind the bed.

How does a four-year-old learn to compose herself? 

My parents never meant to teach me this hiding; I know that. But the world teaches a child, especially a highly observant child like I was. And my parents, too, have their own ways of concealing things, especially when they believe doing so can keep the people they love safe. (Mom’s lymphoma treatment—made to seem so benign that her friend later mistakenly remarked, “You were never sick!” The deaths Dad undoubtedly witnessed working at the hospital.) 

As I grew up, my hiding became increasingly difficult. It was the neuropsychiatrist who diagnosed me with autism in my early thirties who pointed out that it’s no coincidence that my illness began when I was a teenager, a time of dramatically heightened social pressure. I both wanted to live in the world of my peers and didn’t. I wanted to be someone who could succeed in the adult world, fall in love—but to do that, I seemed to have to pretend.

There’s a word for my special kind of hiding—masking, or the ability to conceal one’s autistic traits to get by in typical society. It takes an enormous amount of energy, tamping myself down all the time, trying to hold myself in, within the erasing dark of my interior, where no one will see the unacceptability of me. Masking also required me to deny what were and are very real needs. But for almost two more decades, I wouldn’t know. 

Back to age 19. 

Noel didn’t need a label to make sense out of me. He recognized that the girl who wrote poetry about the profundity of the wind and danced along to music only she could hear was inseparable from the one who seemed to be deeply and easily wounded by the ordinary things of the world. He told me he loved that I felt things so immensely, though he wished I didn’t have to suffer. He assured me that loving me meant all of the parts of me, including when I was hurting.

I felt as if I had spent my whole standing on one side of an impassable gap—with the rest of the world standing across the way—and suddenly, there Noel was, standing in the same place as me. It wasn’t because Noel was like me, but because he had done what no one else did: crossed the distance.

Slowly, despite my resistance, I began to reveal my secrets to him. We spent hours wandering the empty starlit college campus, discussing the mechanics of time and the universe. He grew accustomed to me getting sick, needing quiet, and disappearing into a blanket cocoon. He knew my code: “I don’t feel well,” which could either mean that I was ill or else feeling “too much.”

Still, I worried I would eventually reveal something that would be too much for even him to handle. 

Some revelations were relatively innocuous, such as my tendency to comically seal myself within numerous blankets, robes, sashes tied tight, etc., whenever I’m not in public; see also, my conviction that he is attempting to go to war with me if he turns on any fans.

Others could be scary, like the time I ran, heedless of the trees that I crashed into, so far into the woods behind our college campus that I became lost and had to locate landmarks to figure out where I was.

With Noel beside me, something remarkable happened. My health improved. Not completely. I continued to deal with chronic pain and was sick—a catchall term—off and on. But the intensity and frequency of my symptoms lessened significantly.

What was this magic? Did love save the woman? At the time, I was so relieved that I didn’t question it.

I am not such a mystery. With Noel, I was unmasking. Even if I was just doing so with one person, it enabled me to heal parts of myself and be stronger.

I am part of what is known within the autism community as the lost generation. 

Because we were missed—some as kids and others for their entire lives. We lacked potentially life-saving knowledge about ourselves.

The seemingly sudden increase in recent autism diagnoses is directly tied to changes in diagnostic criteria and better identification; efforts indented to capture people like me, people for whom a diagnosis offers not only vital awareness but also the potential for better care and access to resources (although adequate support for autistic people remains lacking, one major source of support I’ve found is the autistic community itself.) 

I can only speak for myself, but what is within that loss goes deep. Loss dwells not only in the past but also in the future. The unanswerable question: If I had only known, what then . . . ? 

And yet to know enables hope. I look back so that I look again with hope.

If I had known . . . could I have spared us the hurt? 

There is a period Noel and I refer to as “a difficult time,” in the hushed tones of people wary of summoning a ghost. There is no clean chronology of events leading up to it, but first, with the optimistic abandon of two young people in love, we graduated college, got married, and moved, all within three months, to New York City, a place I’d never seen and would have never imagined living in were it not for my trust in Noel. 

“You must really love each other,” snarked the realtor when we signed the lease to inhabit 175 square feet together. I almost never opened the curtains in that first crummy apartment—too overwhelming outside. I listened to the same atmospheric song on repeat to block out the street noise.

But the City was magic too. I felt free to dance in the daytime along the sidewalks, glad for the anonymity. On nights in dingy, smelly bars, I danced and sang onstage alongside the electric pulse of Noel’s synth keyboard. We held “philosophy parties” on the floor with a couple of friends passing around a bottle of Two Buck Chuck while rhapsodizing about our favorite artists and thinkers and our dreams that we, too, might unleash a little bit more beauty within the wounded world. The city was legendary, a hub of art and culture, a bubble of seeming acceptance as long as we stuck to certain crowds, but also a war between flagrant excess and brutal scarcity. Its unlivability lent us a kind of badge-wearer’s pride: Here we were, among so many others, living despite.

In retrospect, I also consider these things: The evenings I spent pressed to the cool porcelain of the bathtub, fully dry, feeling that I could not rise. How I kept needing to escape into the bathroom at work due to stomach pain. How my office job mystified me compared to school. The difference was that school had clear rules. As long as I followed the requirements for each subject and put in the work, I made top marks every time. This made school relatively easy and completely unlike life.

It’s worth noting that I did not consider the social element to be part of school, but, rather, a distraction. An accident of all of us students having to be in the same place together in order to achieve school’s true aim—that we learn and perform on exams. The politics of work, however, were largely social.

On my arrival at slim bookstore cafes for an event or to meet a friend, people often asked me what was wrong. “Nothing,” I would say. “I’m just recovering.” Don’t you also have to wear a kind of armor just to get through this place?

Three years into our marriage, I descended into a profoundly disabling bout of illness. I spent months mostly bed-bound, unable to work or do much of anything, fighting back confusing pains, horrific nausea, and extreme anxiety. At the worst of it, I experienced a profound loss of language—loss of my ability to write. To string words into a complete sentence producing meaning, beyond what ordinary language I used (less since I was in bed) for mundane daily speech, seemed an impossible task.

Cue again the endless doctors and medical professionals. It seemed they all shrugged. Even the fact of my recent medication change, which I now believe had a major detrimental effect, was viewed dubiously and handled with carelessness. 

Here is some of what they missed:

There was the therapist who laughed at me because I liked to sit with my heavy backpack squashed against my body in the chair while I jotted down everything he said in a notebook, because writing things down helps me process spoken information. When he took my notebook away, because he believed I was “neurotic,” that my writing was part of whatever must be wrong with me, I felt so terrible—robbed of the ability to think and communicate—that I lay down on the carpeted floor for the rest of the session, unable to speak. 

Here is a word I now know: shutdown.

There was another therapist who declared that I was completely out of touch with my emotions and only knew how to approach my feelings through logic. She didn’t offer any hypotheses as to why. Or much help.

A word I now know: alexithymia. Difficulty recognizing, experiencing, or expressing one’s feelings. Linked to this is also my tendency to confuse my emotions with bodily sensations. Hunger arrives as sadness. Anxiety is instead chest pain.

There was the psychiatrist who, when I asked, “But why do I feel better when I hum,” glared at me with what I can only call a sick-of-dealing-with-crazy-people expression. “I have no idea,” he said. “Now, which medication do you want to try?” He meant benzodiazepines or SSRIs. Apparently, the choice was up to me, a young woman who knew next to nothing about the drugs.

Word: stimming. (My humming).

I don’t blame most of the doctors. Some, like the above, were clearly irresponsible, but others really tried. What I was up against, in one way of looking at it, was time. I was of the lost generation. 

My dad is a doctor, a radiologist, which if you don’t know, means handling a great deal of X-rays, CT scans, and MRIs—the physical evidence of the body. Dad was quite good at his job until he retired at 66, known to friends for having been able to unofficially but accurately and precisely diagnose broken bones and other conditions given a list of symptoms over the phone. That he could not figure out his own daughter was devastating. 

“I used to wish I could put myself inside what you were feeling,” he told me once. “Then maybe I would be able to figure it out.”

Only in looking back can we see.

I was now in my mid-twenties, and I felt skinless. 

Having pulled through my latest medical hell, I was left trying to reassemble a self. The idea that I was skinless explained to me why it was that I felt too much compared to other people, like I was missing an essential barrier that other people naturally have. It was the fundamental problem of me, the cause of everything that had gone wrong.

Naturally, I began writing a novel. Writing has always been my foremost means of understanding and expression. Before I learned to write in words, I loved to lie for hours within the tent of my bedsheets while imagining vibrant stories. 

However, I felt that I could not write about myself. If I’d ever had words for myself—which I questioned—I felt that the words had been forcefully taken from me. The doctors and their belittlements, together with a society that denied me, had left me questioning my own authority. I no longer felt that I had claim to my own experiences.

Instead, I wrote fiction. I created a fictional skinless woman. Because she wasn’t me, she could be literally missing her skin—or so she has reason to believe—thereby giving her hypersensitivity and strangeness a clear outlet. Because she wasn’t me, she could testify to having lived what I could not. Writing her, the missing words poured from me. Ta-da! How sneaky of me to summon an imaginary person into being so that she could say what I couldn’t. It was a magic trick that now seems naïve.

Let’s just say that at some point in the process, my little gimmick stopped working. The protective chasm between me and the character I’d created slammed shut, and I could no longer pretend.

What I saw on the page troubled me. She’s not normal, I kept thinking. Which meant: I’m not normal. I had always known this in a way, but when you’ve been hiding for so very long, you might not really know what it is you’re hiding. 

I suspected it might have a name. Only, I didn’t know the name.

It so happened that I had a haircut scheduled. This bit of chance would change everything. When J. asked how I was, I did something unlike myself and, instead of giving the standard acceptable response, answered honestly.

I think it was the circumscribed nature of the interaction that enabled me to talk, plus the fact that I only go in once or twice a year. But I’m not giving enough credit to J., who is gentle and genuine, able to put me at an almost-ease in the swivel chair with scissors and a hot fan droning horribly beside my head. I told her about my writing, that I was being haunted by the child I had been, and I told her about some of the memories.

“You sound like my son,” J. said kindly. “My son has ASD.”

Six months later, when I received a diagnosis of autism spectrum disorder, I was surprised. I wondered if I had made a mistake somewhere in the lengthy, two-day evaluation process, which luckily my insurance paid for thanks to my doctor’s appeal that it was medically necessary. I didn’t understand yet. 

Then, I began to. I pieced together the fragments of the girl and woman I was with this new word, autism, and I saw. More clearly than I ever had. I saw in high definition. A whole girl. A girl who made complete sense. Only no one had been able to see it before—what bound her together. What made her story true.

The problem was never me. It was one of other people’s imaginations. Of the necessary capacity and willingness to imagine beyond what, in one’s own perception, the world is like. To accept that another reality is possible. To—having lived one’s life with skin and never thought twice about it—consider the experience of someone who is skinless.

It strikes me, too, that much of the language I am now given for myself is clinical, meaning it is based on an assumption of me as someone who is lacking. Someone who needs to be fixed. I no longer believe that.

Instead, I seek my own language. I write again into the gap, asking whoever is on the other side to be willing to cross the distance.

At first, I only told Noel. “I’m so happy for you. Now you can understand the woman I love better,” he said, movie-perfect.

I was afraid to tell my parents. I thought they would want me to hide, that they’d think I’d be safer that way. But seeing as I kept accidentally writing about myself, and these were things I hoped to publish, I realized there was a chance my parents might eventually hear from someone else. I wanted to be the one.

“I need to know it’s okay,” I told Mom over the phone, meaning the new words I was using to identify myself. I knew she would tell Dad, and I’d be saved from having to have the conversation twice. 

“You can use any words you need to talk about yourself, honey.” She and Dad would be proud to see my words, she said. 

The power she gave me. It felt like the giving back of all that had been taken. 

Then, she asked me not to blame them. This made me sad. Didn’t she know, after everything we’d been through together, that I did not blame them? 

“There were so many times you helped save me.” 

My parents didn’t take my words away, I know that. Nor you, dear reader. But do you know? You do not have to take a thing away from someone in order to give it back.