I’ve been meaning to post about this for a while, and OutrunningTheStorm mentioned in a comment that she was interested, so here we go. This is going to be a 2-part post, as it is rather a long story. The first part is a “short” description of (some of) my childhood, setting the stage (or should I say, a very abbreviated abridged selection, which is most relevant to the second half. But for a better understanding of “me”, please look at some of the other posts here). The 2nd part will be about how I came to first understand what Autism was, and then realize and accept that I had it. This post could totally be titled “Portrait of the Autist as a Young Girl”, but I’m not going to do that, because that’s corny. I’ll content myself with the mention here. I should warn you now that these are rather long and brutally honest posts. I think they’re worth reading (of course), but they are a little longer than my usual posts. At any rate, here we go.
My diagnosis story, part 1:
I spent my whole childhood knowing without a doubt that I was distinctly different from my peers. They talked differently from me, and hated that I used “big words” that they didn’t understand. They wore different clothes and mocked me for my outfits – little did they know that I spent hours agonizing over not being able to wear clothes like them (my god they made me feel awful and uncomfortable, and often physically sick) and more relevantly, to please my mother, who often called me a prude (she still does) because I dress conservatively. I preferred to bring a book to recess instead of running around in the chaos. I was obsessed with rules, and got very indignant when people didn’t follow them – thus I became a tattletale, further degrading their opinions of me. I heard the phrases “look me in the EYE when I’m talking to you!” and “quiet hands!” and “sit still!” and “sit on your hands” and “stop tapping/swinging your fingers/arm/hand/leg/foot/etc” nearly every day. I thought I must just not be trying hard enough, and so I tried harder and harder to please my parents and teachers and classmates.
I was always a few beats behind in interactions with my peers, and would only really enjoy an interaction when I could set the rules on my terms (read: monologue about special interests – I was definitely a “little professor”). I had intense special interests and could talk about them for ages, reciting facts and synthesizing them. I was the “walking, talking encyclopedia” and proud of it (still am!). I was also clumsy and would trip over my own feet and quite often just air. I would go mute in stressful situations, and cried when things got too overwhelming. People in my world hated and often brutally punished “criers” so I learned to suppress it sometimes, which was even worse for my mental health. When I was upset, I would go to the smallest place I could find, curl up in a ball, and press my eyes into my knees, and my back into the corner, if there was one. This lead to me hiding under my desk, under tables, or once, memorably, in my locker.
While my peers were listening to pop music and discovering their favorite bands, whenever asked, I would respond that my favorite music group was “The Boston Pops Orchestra” – they played the coolest music and did it well (I am a classical music person and listened to the classical radio station for hours every day – it is the most beautiful music, in my opinion). I was only truly happy when I was learning about my special interests or playing music (I’m an amateur pianist). There was always a divide between me and my peers, often a brutal one that lead to bullying and misery on my part, though looking back, I see how much of the bullying and hatred I simply missed due to my social obliviousness – so oblivious I missed about 70% of the crappy stuff the kids did to me, because I just didn’t perceive it. The main divide, I realized when I was quite young, was that they cared about people and what people thought of them, while I cared about facts, and knowing a lot of stuff. This doesn’t make for good communication. It’s not that simple, obviously, but it does make a good initial division. I was held back to repeat a year in preschool, because I didn’t wasn’t interacting properly with my peers, and they thought I could use more time learning how to play. I think the writing was on the wall from that moment on, that I was distinctly different from other little children my age. I thought I was broken, and if I worked hard enough, I would be fixed.
When I was in 1st grade, I became friends with a 2nd grade girl. Who was to know we would be friends for life? She spent countless hours helping me along socially, showing me my mistakes and helping me to blend in. I idolized her when I was little, and still look up to her today. She was the first person to give me the Third Glance, and I owe a lot of my ability to “pass” to her. Plus, I had a friend. One friend, who was there for me. It gave my parents an excuse to ignore my other differences and social deficits.
I didn’t find out until very recently that my 2nd grade teacher was the first to raise flags about Asperger’s/ Autism. The diagnosis had been around in the US for only a few years, and its surprising that someone was able to pick it out in a girl (the teacher was working on her PhD in education at the time). There was push for a full assessment that was resisted vehemently by my parents: “She can’t be Autistic, she has a friend!” and “She’s not Autistic! She’s just super smart and a little awkward! She taught herself to read when she was 3.” were the rallying cries. The school agreed that they could hold off on an assessment, since I was academically doing more than fine (by that point the school had run out of math for me – I’d completed everything up to 6th grade by the time we were halfway through the 2nd grade year. I was also reading at a college level.) – in fact, the Principal of my school once told my mother that I was one of the last students placed into classes, because they said I “would be fine with any teacher, because [she is] quiet and does what they tell [her].” – I had internalized the invisibility thing at a very young age. I knew not to cause problems. I just kept my head down and did my work, even when it insultingly simple. I never wanted to cause any problems, so I worked incredibly hard to be perfect. So since I wasn’t struggling academically, and the only supports would have put me into a special education situation, greatly reducing the level of academics I was exposed to, they simply started putting me in weekly social skills workshops with the school counselor and a scattering of my peers and students from the other elementary schools in town. I thought there must be something wrong with me, but I could never figure it out.
Unfortunately, this “support” and “therapy” didn’t solve the problems I was having. I was really good at the social skills workshops. I always knew the answers of correct things to do in the situations. I just couldn’t put it into practice in real time. This is still a talent of mine, in that I can read social situations like a book, as long as I’m not involved (my mind is like a supercomputer – I’ve figured out the rules. I just can’t compute them while in the situation, because my mind has a zillion other things to worry about, then, too). And for the most part, the silly workshops were really obvious: for example, when someone says a mean thing about someone behind their back, the person listening should say “that is not nice. Do not say things like that” and then refuse to pass it along. If you see someone sitting by the side of the playground but not playing, you walk up to them and say “Hello, my name is X. Would you like to play?” When someone is smiling, that means they are happy, but if they are frowning, they are sad. These are simple rules. But I couldn’t process them in real time when I needed to. I thought I was broken.
Despite the fact that these social skills workshops didn’t help at all, I was subjected to them from 2nd through 5th grade. I would still bring a book to recess. I was still bullied by my peers, and couldn’t even begin to stand up for myself and be heard. I still couldn’t speak properly or interact with the other children appropriately. I even went so far, sometimes, to move my whole desk and chair outside the classroom, because it was so chaotic in there that I couldn’t function. Sometimes the teacher would let me stay there for 30 minutes. I still couldn’t tolerate different foods and textures. I had a peanut butter and jelly sandwich literally every single day at school. They had run out of academic material to challenge me with, but didn’t want to skip me up a grade (or more), despite the fact that my only friend was a grade older than me, because they thought it would screw me up even more socially, because I’d be with people older than me. I made my way through elementary school by befriending the kids who didn’t speak English (my school often had foreign students whose parents were doing visiting professorships at the nearby universities – I would interact with them after everyone else decided they were “not cool”. Cultural barriers were always assumed by both of us, and they didn’t think I was quite as weird as my classmates did. The rest of my elementary school teachers raised flags about my social development, but the word “Autism” didn’t come up again – the rest of the teachers had been teaching for 20+ years and I think it wasn’t even something they knew about in the context of girls who were academically gifted – it still carried the image of a young boy completely locked in his own world, self-harming, unreachable, and unteachable. That wasn’t me, and my parents and teachers used this as an excuse to ignore it, and instead spend countless hours and energy forcing me to conform.
Then I got to middle school. I crossed districts to get away from the bullying, and because my best friend was in the school already. And in middle school, I actually made a friend in my own grade. She was that “mother hen” character that often comes up in discussions of Autistic girls and their development. She went out of her way to include me, and help me out, and she adopted me into her group of friends. She was the second person to take the “third glance”. But I was still miles ahead of things academically, and miles behind socially. The school psychologist started “seeing me” on a semi-regular basis. One day we met with someone I didn’t know, who wasn’t from the regular school, and they asked me tons of questions about myself. They followed me around to my classes and sat in the back of the room. I met with this person several times, then stopped. I hated going to the school psychologist, and eventually that stopped too. I found a teacher who would let me eat lunch in their classroom, while reading a book. We even found a couple other kids and formed “literacy club”. Ironically, middle school, which is supposed to be the time when girls struggle the most socially, I had (for the first time) somewhat of a solid group of friends in my grade! I was always on the periphery, but they invited me to their birthday parties, and sometimes over to their houses. Sadly, when we got to high school that ended. We all went different directions and were in different classes. They stopped treating me respectfully, rumors started flying, and I was suddenly without friends in my grade, again.
Throughout all of this, I still had my friend from 1st grade. I became “friends” with her friends – we all took the bus to school and it would get us there 30 minutes before school started, so we would sit together in the cafeteria and talk. I never had classes with them, and wasn’t ever invited to any of their gatherings outside of school, but my definition of “friend” was someone who talked with me and was nice, so I had some friends. It never really occurred to me that they were simply tolerating me at school. Oblivious. They did like my company, but never wanted it outside of that 30 minutes in the morning. This doesn’t hold true for my original friend and one other girl, both of whom I am still friends with today.
And so throughout high school, I became isolated. I was part of an academic club that was my saving grace – it was all about my special interest, and boy did I dedicate my life to it. I read tens of textbooks, hundreds of webpages. I had a group of people who I saw once or twice a week, who would talk to me about my special interest. I wasn’t friends with them outside of the context of the club (they were all friends with each other, though). A theme throughout my life is that I can’t carry on a conversation about “nothing” or “fluff”. I don’t know how to have friends outside of the context of school or academics. I don’t know what to do as soon as you remove us from the controlled environment where we met and usually interact. I thought it was just because I didn’t have enough practice, since I hadn’t had friends in my early years.
But through all this, I was doing fine academically. In fact, it was really pretty easy for me, and my biggest issues were motivation to do the work. I definitely had executive function problems, and turned in essays that were written the day they were due. I lost some homeworks, and didn’t get everything in perfectly, but overall, I was still doing pretty well without external academic supports. The material wasn’t challenging, and I was bored. I’ve always been a good (and fast) test taker, so I’ve never needed the “extended time” or “separate room” accommodation. I’ve always been able to do just enough to get by on my own. I wonder whether I could’ve done better if I had had any sort of supports – I might’ve graduated with a 4.0 instead of my 3.6. Or maybe not. But in the end, it really doesn’t matter that I got a B- in high school French because I just couldn’t get all of the work done properly. At the time, though, I thought I was just a complete and utter failure for not being perfect, academically, since for the most part, the concepts were incredibly simple for me.
Then I got to college. I moved across the country to a school where no one from my high school had gone in over 10 years. I figured I would have a clean slate. A chance to start over where no one knew me yet. I could finally, finally fit in. I moved into the dorm. I went to classes. I joined a club. I made friends. I started doing research (!!). I was immersed in academic heaven, surrounded by opportunities to think and work and learn all about things that pertained to my favorite things, and it was wonderful. But rather than blend in and fit with my peers, I stuck out more and more. Those “friends” decided they didn’t want me around anymore. In the fall of my first year, I heard the words “Do you have Asperger’s?” for the first time. Little did I know how much that simple question would change my life.
To be continued… Please read Part 2 Here
(I will make this a link when I put up part 2 in a few days)