Hi, my name’s Aaron Levinger. I’m twenty-one years old, and I was first diagnosed with Asperger’s Syndrome, or AS, in middle school – maybe around seventh grade. I want to tell you a little about my experience.
Today you’ve heard a little about Autism Spectrum Disorders such as AS. You might be wondering what causes them. Nobody knows for sure, but it’s not a disease – it’s a difference in how your brain works. That answers a question people sometimes ask – “Is it contagious?” or “When did you catch it?” It’s not contagious, and you don’t catch it – you’re born with it or you’re not, and if you are born with it, you always have it.
When I was in high school – about fourteen years old – I wrote an acrostic to describe what it’s like to have AS. An acrostic is when you take each letter of a word and make it the first letter of a sentence about that word – you know, like C is for Cute, A is for Always Chases Mice, and T is for Tabby – Cat. Before I get to the acrostic, I should make it clear that this is only from my experience. People with AS are as different from each other as people without. Stephen Shore, who has AS and has written books about it, said a quote that I really like – “When you’ve met one person with AS, you’ve met one person with AS.”
So I can only speak for myself, but I’ll go through the acrostic and tell you what I think each letter means. I’m not going to do it in any order, other than maybe the order things pop into my head.
Let’s start with P – People Seem Strange To Them. I don’t always completely understand people without AS and how they think. Why do I always have to make eye contact with people when I talk to them? I can listen just fine without looking. Eye contact just isn’t something I think about. Another one is space – people sometimes have to remind me to not stand inches away from them. I’ve never really thought that how far away I am from people matters. A story I can tell you about not understanding how people think happened when I was very little – maybe four or five. My parents and I were at a Super Bowl party, and I walked over and turned off the TV. I can’t remember why for sure, but I think it had just gotten too loud for me. I didn’t consider that other people would be watching – if I didn’t want to watch, it shouldn’t be on. The “social rule” I really don’t understand is that people don’t always want to talk about the same topic – game shows. Game shows are my “special interest” – and that’s the first S.
People with AS frequently have a “special interest.” It can be anything. In my case, it’s game shows, but I’ve heard of people who are interested in trains, science fiction, baseball, vacuum cleaners, or anything else under the sun. When I was in fifth grade, game shows were all I thought about, and if you had let me, it would have been all I talked about. I could have, and probably still could, spend all day talking about the latest game shows – who hosts them, how those hosts are doing, how that game relates to every other, and so on, mentioning shows nobody has heard of but me. That’s if you had let me. Don’t discourage special interests. I suppose if it’s something bad, like drugs or violence, you should discourage it, but there’s nothing wrong with liking game shows. I like them so much that I’m trying to pursue a career in television production! I’ve done work for several years at the Wellesley Cable Access Channel…and guess what? I make game shows there! I’ve even done “Are You Smarter Than A Fifth Grader?” I also applied for an internship at WGBH – you know, PBS channel 2. My ultimate goal is to be the producer of a game show on national television – and yes, I said producer, not host. I’m strictly behind the scenes! The point I’m trying to make is that special interests can lead to jobs doing what you love! Despite all this, sometimes it’s OK to let people with AS know that you’d like to talk about something else. I can’t always pick up on what you’re thinking without you saying anything, so if you don’t tell me directly, I’ll never know that you don’t want to hear a lengthy review of everyone who’s hosted “Family Feud.” I’ve heard people say that they’re uncomfortable being direct, but it’s really what I need.
That leads me to the other S – Social Rules Are Hard. I have a hard time adjusting to different places. I work at the Wellesley Library, shelving the books. You’ve ever wondered who puts the books back on the shelves after they’re returned? I’m one of them. It’s pretty boring, but it’s a job.
While working at the library, I’ll sometimes run in to people I know who have come into the library to check out a book. When I see these people, I say hello to them, but I had to learn to use a quiet “library” voice. If I didn’t learn that, I would shout “Hey, It’s You!” in the middle of the library, which is NOT a good thing to do…certainly not when they pay you! You might not think of how people talk to each other in terms of rules. I have to – otherwise, I’d never do it.
That takes me to the first R – Rules Are Very Important To Them. One story that sums up a lot about me and about AS was when I was in middle school. Do you like eating lunch in the school cafeteria? I sure didn’t. For starters, it was big and loud, but the worst part was that every day, when lunch was over, the Assistant Principal would stand up in front of everyone with a microphone and dismiss each table one by one. When people starting getting up without being dismissed, or when they talked over the teacher who was trying to tell them to be quiet, it made me incredibly upset and frustrated. The rules weren’t being followed, everyone was too loud for me, and it just got to be too much.
In addition to rules being broken, this upset me in another way. The first E is for Ears Hurt When Things Are Loud. That’s true in my case, but for people with AS, it could be any sense that bothers them – too much light, or smell, or a certain taste. When things are too loud for me, it hurts me. To this day, when I’m in the car and someone honks the horn, I’ll be startled and say “What just happened?” Another example? When I was writing this speech, I brought my laptop computer to a Starbucks. I’d never be able to focus on writing at home, but it wasn’t easy at Starbucks either. The people were chatting, there was music in the background, and the coffee grinder would start every few minutes and drive me crazy. You might not even notice the coffee grinder. If you do notice it, it might be the only sound you notice. I notice everything. When I was in eighth grade, I really had trouble with sensory input. I would notice the school bell, the smell of the markers on the white board, the voices of certain teachers…everything. I ended up having to put my head down on the desk to completely block out visual input. I still was listening, even if nobody knew it.
Of course, noticing everything can wear you out. The other E is for Every Day Tries Very Hard. I used to come home from school and fall dead asleep, every day. It’s not that that day was unusual, it’s that it just took me an enormous amount of effort to get through a day at school without collapsing on the floor, completely unable to function. Things that are easy for a lot of people take extra effort for me. I had to take breaks in the middle of the day to keep myself going. If someone with AS asks if they can take a break, let them. It’s not about being unfair – they really need it.
How do I make it easier for me to get through a day? Routines. G is for Gets Mad When Routines Aren’t Followed. When I was a little younger, I would tell people – only partially joking – that I had an internal schedule that had to be followed. If something happened that didn’t match up to what I thought was going to happen that day, I would lose control. When I was in third grade, my teacher decided to team up with another teacher and play an April Fools joke. They would switch places for a day. They thought it would be funny, and I’m sure some kids thought it was. I didn’t think it was funny. When I walked in and saw a different teacher then the one I was used to, I ended up in tears, no matter how many times the assistant teacher explained that it was just an attempt at a joke. I must not have been the only kid who was crying, because by the end of the day, the teachers had gone back to their usual classes and apologized.
By now you’re probably wondering how I remember events that probably happened eighteen years ago. The second R is for Remembers Things Very Well. As I’ve said, I have a special interest in game shows. Well, I’ve come pretty close to memorizing who hosted every version of every game show ever made…and not just in America either! I just retain the information. That’s true for a lot of people with AS. I myself remember text better than pictures, but there are people whose memories are visual – they can remember every detail of what they’ve seen. I remember text really well, so I frequently can quote books. One of my favorite books of all time is The Hitchhiker’s Guide To The Galaxy series by Douglas Adams. That might come close to being a second special interest – I’ve read the books, watched the TV show, listened to the radio show, read the comic books, saw the movie the day it came out, and so on. I think they’re hilarious, and frequently, when something happens that reminds me of a scene from The Hitchhiker’s Guide, I’ll end up quoting chapter and verse. I could probably recite most of the episodes from beginning to end.
Finally, we come to A – Always Mean Well. I’ve talked about things that might sound annoying – crying during school, turning off the TV at a Super Bowl party, excessively quoting my favorite book, and so on. Well, I don’t mean to be rude by doing any of these things. I just don’t quite realize that people are annoyed by it. It helps me when people remind me that they don’t like what I’m doing, or understand that my brain just works differently. You might have experienced something like this at some point. Have you ever been in a place where it’s too loud? Have you ever started talking about something you like, only to realize that the person you’re talking to doesn’t care? Of course people without AS can have all these feelings and experiences – people with AS probably just have it to a greater degree. Thank you for listening, and I hope that you understand Asperger’s Syndrome a little better now.