Skip to main content

Getting Personal: Growing Up with Undiagnosed Autism

I don't fit the stereotypes for autism. When I was a baby, I didn't avoid eye contact, but rather would stare people down. I was extremely communicative, something my mother attributes to the fact that as soon as I was born she started a continued stream of conversation and refused to simplify to baby talk. I befriended my teachers, I had friends, I was involved in extracurricular activities, and I got excellent grades.

Most of this, I attribute to music.

When I was 3 years old, I started to study the violin. My teacher used the Suzuki method, which included group and private lessons every week. When you hand a three-year-old an instrument and round up an audience, you don't just tell them to go play; you spell out all of the expectations of a concert, what the musician's role is, why the audience is there. I effectively got an explicit introduction to social rules.

I was taught to make my audience feel included by finding a moment to look at each person, and to look at their hairline instead of their eyes if I might find their face distracting. I was taught that my audience wouldn't know what I was feeling unless I showed them, so I should smile so they would know to be happy and have fun with me. I was taught that when people give time and attention to something that matters to you, it's important to show them you're grateful for their time, which was why we bowed when they clapped and gave them first pick at the post-performance dessert station. I was taught that fidgeting and excessive movement would distract from the music, and that all that my audience knew about me came from what they saw when they watched me perform. In essence, I was being taught about social reciprocity and how to use nonverbal communication. None of this ever felt like a personal criticism, because it was all taught for a very specific context; even so, when social situations confused me later, I applied those lessons from concerts to fake my way through.

Aside from concerts, I was also learning to be around other people in an appropriate way. If you've ever met a 3-year-old, you probably know that they have a propensity for tattling. In group lessons, I was taught that even when something is true, it can be inappropriate to say it. I also learned that no matter how much a topic interested me, it was not acceptable to bring it up when the people around me were focused on a different goal.

Of course I made mistakes. Twelve years later my teacher still loved the story of when I repeatedly interrupted my first concert because I wanted to tell everyone that my parents had bought me the movie Sleeping Beauty. But I was 3, and those mistakes were normal. By the time such mistakes might have raised red flags to my teachers, I'd learned to suppress them, all without thinking I was suppressing any of who I was. It never occurred to me that my classmates hadn't needed such explicit direction to learn correct social behavior.

In elementary school, I had a few friendships, in my own way, but my idea of fun was a bit unusual. I remember many games of "teenagers" where I decided to roleplay an 18-year-old me shopping for college textbooks; my cousins would go off to play various social situations while I'd sit alone by the bookshelf choosing my textbooks, then sit alone on the bed pretending to read those textbooks, then sit alone on the floor pretending to take notes during class, and so forth. I thought it was great fun, so long as I didn't have to roleplay any interactions with others. I had arguments with one girl who could never seem to decide in advance whether she'd want to play with me at recess, and that unpredictability eventually frustrated me to the point that I terminated the friendship (I can't say I ever knew another 6-year-old who thought their recess plans should be by appointment only).  I even tried to convince my younger brother to help me in making library check-out cards in each and every one of our books, and a catalog of those books, to ensure none ever got lost. This was my idea of the ultimate game.

Meanwhile, I developed a few special interests. At age 5, my mom started reading Harry Potter to me, and soon I was assembling my own copies of the spellbooks and taking notes on the history of Hogwarts. In kindergarten, I would insist my parents let me browse the Harvard website, because I wanted to calculate how many pennies I would have to save per year to afford attendance. By first grade, I was going through a chapter book every day, begging my teachers for homework, spending recess sitting alone writing stories, and asking my parents whether I could put winning the elementary school talent show on my future college applications. School, books, and Harry Potter filled every spare moment of my life.

I was also impossible to argue with, because I was so unyieldingly logical: when my parents told me I couldn't have a horse because we couldn't afford one, I found someone who was giving their horse away for free, and when my parents explained that the real expense was the cost to keep one, I drew out how we could build a barn in the back yard and grow our own horse food in the front yard.

Countering my logical side was an intense sense of empathy -- that is, once I could understand what people were feeling. One day, my mom explained to me the importance of doing as I was told even when I didn't want something, as it hurt her feelings if I only cared about being good when I would get something for it. So, in the middle of the summer, I sat down at the table and wrote a letter to Santa Clause, asking how he was and offering to be his penpal, explaining "I know you must wish you got letters other than around Christmas time." Don't worry, I didn't forget about safety: I gave him a code word so that when he wrote me back I would know it was him, and not "someone trying to steale me." Yes, my parents kept the letter.

That said, knowing what people were feeling so I could empathize with them was a bit of a challenge. Throughout elementary school, I must have driven my classmates completely mad. When I found a TV show I loved, all I wanted to do was talk about it; when one classmate asked me to please talk about anything else, I thought he was just being petty, because clearly if I enjoyed the topic so much then he would enjoy it too if he would just engage. So, I talked about it even more, thinking this would help him understand. This is something that I struggled with even into high school: one of my few friends begged me to join a sport team with her, citing the dozen other extracurriculars she'd joined on my suggestion. I was baffled; I had no idea why I should do something that didn't interest me just because she'd happened to be interested in things I liked. It wasn't until I found out I was on the spectrum, looking back, that I realized she'd joined those extracurriculars to spend time with and support me, and I refused to do the same for her.

At this point I have to acknowledge someone who may literally have saved my life: in 5th grade, I saw my teacher teaching another student how to knit. I immediately asked if I could learn to, and the other student and I became good friends. E and I were quickly inseparable; we knit together at recess, we sat side by side and knit through class, we discussed books, and we drove classmates crazy by speaking exclusively in pig latin for the better part of a year. We even turned our cubby into a reading nook, placing pillows on the bottom, a tape handle on the inside of the door, and battery-operated light on the ceiling. Whenever we finished our work before our classmates (which was almost always), we'd take turns taking a book to curl up in the reading nook, where sensory inputs were minimized. I didn't realize it at the time, but knitting was fulfilling a stimming need, and that reading nook gave a space for sensory recovery. On top of that, I had a healthy friendship where my special interests were celebrated instead of tolerated. When I look at the friendships I developed later in life, I sincerely believe that E is the primary reason that I retained some sense of self.

Which, I suppose, brings us to the unhealthy friendships. I should preface by saying, as good as some parts of elementary school were, I was also bullied; I just didn't realize it. There was the time two classmates invited me to play tag, only to go hide, enjoying the laugh as I searched everywhere for them. Or when, on a zoo field trip, a classmate tricked me into looking for our chaperone in the wrong place, so that the chaperone accused me of running off on my own and punished our entire group by bringing us back to the bus for an hour of the field trip. I didn't realize any of it was deliberate until one day, in chorus (taught by my mother), someone told a joke. I'd been reading a book where an old man laughed at a joke by throwing his head back, rocking back and forth, and slapping his knee. Thus, I thought that was how you were supposed to laugh when something was funny. When I did so, my classmates mimicked me, and it wasn't until my mother gently explained it to me that I realized they hadn't sincerely been laughing too. Cues I'd interpreted to mean that I was succeeding socially had actually been cruel mockery, and I'd had no idea. So, Halloween of 7th grade, when a child trick or treating at the same time as me asked who I was supposed to be (the answer was Mozart), I assumed he was making fun of me and gave a snippy response. Even as bad as I was at reading faces, I could see I'd hurt his feelings, and he ran off before I could apologize. At that point, I stopped speaking to anyone near my own age whenever I could avoid it. Knitting and books became tools to avoid social interactions. I trusted teachers (and spoke too loudly and too frequently with them), but avoided classmates wherever possible.

That is, until I met D. D transferred to my school sometime in 7th grade, and quickly made a project of drawing me out. For better or worse, it worked; soon, D and I were talking over instant messenger before school, at our lockers between every class, all through lunch period, and for hours after school, every single day. He became my first special interest person; he was willing to explicitly explain most things, and before too long I started to think that I could read him. It was the first time I felt like I really understood a person's unspoken intentions, and I thought that meant we were somehow connected.

Being friends with D got me out of my shell a bit, and at first it was wonderful. The trouble is, people who are willing to have that degree of contact are rarely healthy, and D was unhealthy in a self-serving way. When my dependence on him was clear, he started collecting other insecure girls to be friends with as well. Eventually, he told me he couldn't be friends with me anymore because I didn't self harm, which he said meant that I didn't need him enough.

If you're autistic, you probably know what it feels like to lose access to a special interest. It's debilitating. If you don't know you're on the spectrum, it's especially hard, because you don't know what's happening. You spend all of your life masking, not realizing that the people around you aren't doing the same; you probably lose track of who you are without the mask, so you define yourself by your special interests. So, if one of them is gone, you no longer know who you are.

Over the next few years, I had a series of other special interest people, each of whom gradually encouraged self harm (which I did through bruising rather than cutting), suicidal ideation, and insecurity. I immersed myself in religion, because prayer gave me a way to think I was still doing something of value for my friends even when they hated me.

Meanwhile, the people I'd thought of as friends grew less and less relatable to me; I couldn't even fathom breaking the law, so had no interest in drinking, cigarettes, or pot. I was never invited to a single party, and didn't have the social awareness to notice. Mostly, I created a rigid routine for myself through extracurricular activities, often staying after school until 9PM then starting homework for my ambitious course load. I spent weekends at a prestigious music school, so there was never a day I wasn't scheduled somewhere. If I did have any free time, I still found excuses to turn down social opportunities if I had less than a week's notice (when's the last time you met a high schooler who planned social events more than a week in advance?). I attended one homecoming dance, hated every second of it, and never went to another. I skipped prom and senior dinner dance. I picked up a new special interest -- foreign languages -- and in practicing with foreign penpals, entered into a relationship with a guy I'd never met who lived in northern Africa. When that eventually ended, I started dating someone 5 years older than me, who I met online more locally, and dismissed countless signs of incompatibility because he seemed nice. By the time I graduated high school, I had no more friendships, an overly-dependent relationship, and was convinced that having friends was immature and something anyone with goals would outgrow.

Then, I got to college, and all the functioning I'd been doing suddenly crumbled. I no longer had a clear routine; my classes were at different times, in different places, every day, and most of what I had to do was on my own time. Nothing was familiar. All at once, all the challenges I'd learned to cope with became overpowering. I couldn't eat if my roommates were in the common area, because there was too much auditory input. I couldn't make it to class, because the crowded hallways were too overwhelming. I continued to do what I needed to to get good grades -- the one part of my self that I could keep despite being 500 miles from home -- but aside from that I rarely got out of bed. The few times I tried to start conversations with classmates, I was painfully aware of their impatience and disinterest, and soon just the thought of trying to socialize would trigger what I now know were panic attacks. When I went to student mental health services and begged for help, they told me I didn't need therapy; I just needed to make some friends. I nearly gave up at that point, having exhausted every resources and found no help.

Second year of undergrad, I met G. G was diagnosed with Aspergers (this was just before DSM-5 eliminated the diagnosis), and he became my first friend in years. I won't go into much detail about G, because there should be several trigger warnings for such a story; suffice it to say, he became horribly abusive, and I was left with PTSD. But, one good thing came of the experience: a month after meeting me, he asked if I'd been diagnosed yet, and recommended I read up on autism. 8 months later, a psychologist confirmed for me that I am on the spectrum, though she recommended against official diagnosis at the time. In a later post, I'll explain the process from learning about autism, to diagnosis. For now all I'll say is, everything changed. It turns out, when you know what's wrong, it's a lot easier to fix it. And no, what's wrong wasn't me; it was the way I was trying to interact with my environment without any regard for (or understanding of) my needs.

Here I just want to add one disclaimer: there is a friendship I left out of this story, because to this day I'm not sure what to think of it. But, it seems dishonest to give so much background and leave out someone significant. In kindergarten, S and I were in the same class, but we didn't interact. Then in 1st grade, she was the only person I knew, and we quickly became best friends. We had virtually nothing in common, but 1st graders don't really care about that. For 3 years we were inseparable, until I went to a different school for a few years. In 7th grade, we were in the same school system again, and we got back in touch. We had plenty of ups and downs, but always described each other as best friends. She was the only person with whom I'd schedule things without notice, and I thought of her almost as a sister. Then senior year, she betrayed a confidence, and I called her mother out for saying something racist about the guy I was dating. We stopped speaking. When I got to college, I texted S to say I was sorry we'd left things on such bad terms, and I hoped she was doing well. She responded by telling me she'd never liked me, no one had ever liked me, she'd asked people to pretend because she felt sorry for me, but now that we'd graduated I should please lose her number. Looking back, S had said a number of cruel things to me over the years (I still don't know why her response to her first kiss had been to tell me that we'd both always known she'd be kissed before I would; given that I was actively against dating yet at the time, that seems especially needless, but she seemed to see it as a value judgment against me), but she also spent far more time with me than would make sense for an act of pity. Whatever really happened, the experience was horribly scarring. All of this is to say, I don't include S in the history of my autistic experiences because I have no idea how to categorize her, when things changed, or what social cues I missed.


Popular posts from this blog

Self Diagnosis in Autism

Autism is a rare field where -- at least within the autism community -- there's a general acceptance of self-diagnosis. I want to address why that is, and what it means for you or those you care about who choose to self diagnose.

I want to start by saying: "Autistic" isn't a label that people give themselves for fun, or for perks. It doesn't help you get a job, no one sends you flowers, and unfortunately it comes with a lot of stigma and misunderstanding. Many autistic adults choose not to disclose their diagnosis to colleagues or family members because of the challenges that would follow, and some autistic adults will even turn down funding awards because having their name associated with the award might "out" them to family or colleagues who are less than accepting. If you know someone with autism who is open about it, this is a good moment to pause and appreciate the courage it takes to tell the world something about yourself that you know can be use…

Yes, You Are Autistic.

What if I'm not REALLY autistic?

What if I'm just f***ed up, a failure, and I'm claiming the title "autistic" so that I can avoid facing that??

What if people only believe I'm autistic because I'm convincing them that I am???

These questions have been some of the hardest I've faced, and they're questions that are common among late-diagnosed and/or self-diagnosed autistics. People who are late-diagnosed with autism often express challenges feeling like a part of the autism community, which can cause quite a lot of distress. Often, the root of that anxiety is wondering whether we really are autistic.

This worry can come from many sources, but some are particularly common:

Family members and friends often question or dismiss the diagnosis. 
Autism is still largely misunderstood, and shrouded in stigma. Sometimes, family members and friends respond in a way that they think is reassuring, but which is instead deeply invalidating. "You don't look …

Empathy and Autism

Today, I sat down to write about relationship conflicts in autism, and I realized that there was a topic I had to address before even considering tackling social challenges: empathy. I can't emphasize enough how misunderstood the experience of empathy in autism spectrum conditions has become. Let's start by making one thing very clear:

People with autism can experience empathy.

I'll say it again. 
Autism does not equal a lack of empathy. 

If you're not sure you understood me, go back a few sentences and repeat until you're confident you understand. Seriously.

This isn't meant to be rude or harsh; it's just the most important lesson someone looking to become informed about autism can learn. And, sadly, even many clinicians don't seem to have been clued in yet. I'm not the only one who's been told by a doctor or psychologist, "You can't be on the spectrum, you seem to care about people!" I have friends who've sat through clinical p…