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Update: I previously published this a couple weeks ago and am re-posting in honor of autism awareness day. In the past weeks I have been learning to accept this revelation while remembering that nothing really has changed. I am still me; the same me I have always been and I still have the power to define myself and not allow some label to do it for me. It has helped me to identify areas in which I need work, and I have some ideas on how to go about creating more structure in my life.
Original post: I came across this article a few weeks ago called “The Invisible Women with Autism.” It struck a chord and I recognized myself instantly. I have known about autism for many years and even identified with some of the traits, but it never really fit. This article did. Apparently most models of autism are based on observations of boys and men. Women on the spectrum don’t fit that profile. The traits are similar, but they appear differently in women and girls because we are socialized differently and may learn to blend into the dominant society better whereas it may go unnoticed or misdiagnosed.
I am not officially diagnosed, nor do I think it is necessary for me. It completely fits; I feel like it explains my entire life. In the past week or so, I’ve bought 10 or more books on the subject, taken online Aspergers tests. It all fits. And I could not have realized it at a better time.
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For the past couple months, I have been in danger of becoming completely isolated. For most of my life, I have kept myself insanely busy, so busy that I didn’t have time for, nor need a social life. About 5 months ago, I graduated with my M.A. degree. I had been working two jobs and going to school full time so all I had time for was work, school, homework, sleep. And suddenly, I didn’t have school anymore, I was down to one job which I work 3 nights a week, leaving me with my days essentially free and unstructured. The first couple months I was excited to have free time, started working on two books a memoir about my quest to understand dreams and the nature of reality and a fiction story involving lucid dreams. But then the lack of structure and my odd sleeping schedule merged to the point where I didn’t feel it necessary to get up during the day. At all. My sleep cycle shifted and I became almost entirely nocturnal, sleeping until 5 or 6 pm, going to bed at 10 or 11 in the morning. I had no idea how to stop this. At least before, I would go to bed at 3 or 4 am and wake up at 11 or 12. I was not happy with this at all, but as long as I had nowhere to go, nothing to do, and no one to do it with, I had no reason to get out of bed. I was obsessively shopping on eBay, collecting more gadgets that I don’t need, but I didn’t know how to stop. I tried coming up with things to do, but as long as they don’t involve other people, I couldn’t make myself do them. I bought a bike, thinking I would learn how to ride again (pretty sure I have forgotten). It is still sitting in my living room because I don’t know how to put it together and haven’t figured out who can help. (Yes I know I can take it to a bike shop.)
At least for now, I’ve had my research on autism to keep me busy and have managed my sleep to one full day of recovery after work and have been able to be awake during the day otherwise. I also joined a co-working space, autism support group, and am working on adding more structure to my life.
Apparently some of us on the spectrum have what is sometimes known as executive dysfunction. It could be why I cannot seem to function without some sort of structure in my life, or why when I’m absorbed in a book or a project, it doesn’t occur to me to eat and my cat has to remind me, or why I can’t seem to keep my apartment organized unless I live with someone else, etc.
Since I’ve figured this out about myself, it has caused me to review my entire life experiences through this new lens, and it’s such a relief to finally have an explanation for while I’ve often felt like an alien, like I’m on the outside looking in, observing the ways and customs of this world. So many other Aspies feel as if they were born on the wrong planet, it’s nice to finally know I’m not alone in this.
Being on the autism spectrum generally means that our brains process information differently from those who are not; and those differences give us certain benefits or gifts as well as disadvantages due to trying to fit into a world that was not designed for us and is not particularly friendly to those who are different.
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What has been the most difficult in coming to terms with this is what people usually think when we hear autism or autistic. Everyone on the autism spectrum is different, we are individuals, we cope with the difficulties of fitting into a society that isn’t designed for us differently. Some of us have delayed speech and language processing, some of us don’t, some are extremely intelligent, some are able to successfully cope with our differences and some struggle more. What we have in common is that we all seem to view the world differently than other people. Differently, but in similar ways. It is thought to be a combination of genetics and behavioral factors.
I’ve also noticed that I find myself now wondering in social situations how much I am missing out on, and whether other people find me completely socially awkward. But then I realize that I am still me. I will always be me, and nothing has changed. The only thing that is different is that I now identify with this label, but I don’t have to let it define me. At the very least, it has given me an explanation for what I have been searching for my entire life, for why I have always felt different, why people always see me as different, and that no, there is nothing wrong with me. I am exactly how I am supposed to be, just not how this society expects me to be.
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I often have difficulty making decisions, especially if it’s in answer to an open-ended question such as “What would you like to do/eat?” For me, there are so many variables to take into consideration that I usually go with what the other person wants, because most likely, they care more than I do anyway. Even supposedly simple questions like “what’s your favorite color?” or “what is your favorite music/song?” These are usually asked as small talk in order to get to know someone, but I usually don’t see what they have to do with actually getting to know me. I’m a person, I can’t be summed up in whatever answer I give to these questions. I wonder what people think they’re learning about me when they ask, and I don’t know how to answer.
Alexythymia is a condition common among autistic people as well. It is characterized by a difficulty in identifying and expressing emotions. I can usually identify basic emotions such as happy and sad, but it is difficult for me to identify and my own emotions in the moment. There are many times when I review a situation and realized I should have been upset about something, but of course by that time, the moment has passed. I think because of this, I am very good at dealing with people who are difficult because I am able to stay calm and not fall prey to their emotional whirlwinds.
I also do not make eye contact naturally. I have learned to do it because it seems to be valued in this society, but it is something I have to force myself and remember to do.
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One of the criteria for Aspergers or autism is self-soothing behaviors, sometimes called stimming. (I really don’t like this word). At first I couldn’t think of many, sometimes I tap my fingers, or especially when I’m nervous I fidget or play with my hair or jewelry. But I realized another one…
I may not talk to anyone else, but I talk to myself. A lot. And for as long as I can remember. I still do. It helps me to process social situations. If it went well, I will sometimes replay it, speaking softly to myself (when I think no one is around) or if it didn’t go well, I say to myself what I should have said. I rehearse future conversations, especially telephone calls. I know now that I can’t predict the other person’s responses, but I need to have an idea of what I want out of the call so that I won’t get lost and forget. When I was little, I used to rehearse entire conversations such as “I will say this, and she will say that, and I will say this, etc… Of course it would never go according to plan because people are unpredictable.
I talk to myself when I’m home alone, when I’m driving, sometimes when I’m walking down the street, or in a store. I sometimes laugh or smile if someone catches me, but I know I’m not crazy.
Most of us also have sensory issues…
When I was little I couldn’t deal with loud noises. My parents took me to see E.T. in the movie theater when I was 2, and they didn’t understand why I screamed and cried. It was the noise. Movie theaters very are loud. So as I got older, I would purposely go to sleep whenever we went to see a movie so I wouldn’t have to hear the loud noise of it or disturb everyone by crying.
I identify very strongly with characters in movies or books. To me, they are real, and what happens to them is happening to me. This is why I cannot watch horror movies.
I have issues with touch. I don’t particularly like other people touching me, especially strangers. I can’t imagine paying for someone to give me a massage. My skin is very sensitive and just a light touch tickles. But surprisingly, I do enjoy intimate touch. I have learned to deal with hugs from people I know somewhat, but anything more than that I find uncomfortable.
Certain patterns are visually jarring to me. I remember when I was little there was a mug in our pantry that I couldn’t look at. It had an array of white lines in a particular pattern that seemed to hurt my eyes when I looked at it and I would have to look away. Another is if you have ever seen a group of little tree frogs together…That pattern hurts my eyes as well.
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I have always been a very picky eater. I have been told that when I was a baby I would only eat ice cream and Jello. My mom was worried there was something wrong with me because I wouldn’t eat. The doctors only said I would eat when I was hungry. They used to try to force me to eat, putting food in my mouth, but it only ended up messing up my teeth because I would just hold it there and not swallow it. I used to take my lunch to school, and I would eat the same things for weeks at a time until I couldn’t eat it anymore whether it was peanut butter and jelly sandwiches, or tuna sandwiches. To this day I still won’t eat tuna anymore. Some of it has to do with texture, I don’t like pulp or seeds in liquid or things that should be smooth. I don’t like bits and pieces of things in my ice cream, ice cream should be smooth and I shouldn’t have to chew it. I don’t like chunky peanut butter or chunks of tomatoes, although I like smooth tomato sauce and smooth peanut butter. The list goes on… but you see my point. I will still sometimes eat the same things over and over… (currently its banana bagels)
I have been called shy for as long as I can remember. To me, it was a derogatory term. I am an introvert and am naturally quiet, but social issues created some anxiety as well since I didn’t know the rules for social interaction. One memory comes to mind. I was around 5 or 6 and I was at school with my best (and probably only) friend when a boy asked her a question. She answered him and then he asked me the same question. I repeated her response, thinking it was an acceptable answer. I didn’t know I was supposed to answer differently. I thought questions had a right or a wrong answer and since her answer was okay, it must have been the right one.
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I have always been an observer. When I was in preschool or kindergarten, my mom would ask me what I did in school and I would describe in detail what everyone else did. And she would ask “But what did you do?”
I watch everyone and everything around me, learning how to copy their behavior in order not to draw attention to myself. It is what I do especially when I am in a new situation. I avoided many social faux pas because I simply didn’t talk to too many people or seek out social interaction. I don’t normally think to share things with others, it usually just doesn’t even occur to me.
They say we sometimes have obsessions, or obscure interests…
I have loved books and words for all of my life. According to my parents, I could read by the time I was 2 years old (hyperlexia), and was reading Jane Austen and all the classics when I was in 1st grade. Books have always been my escape, and I could remember details from every book I read.
For a while I was obsessed with Victorian times, I wished I could have gone back in time and lived there. I thought I had been born in the wrong century. I wore long skirts and dresses until about 5th grade when kids at school began to talk. I started dressing more like them in an attempt to fit in which was (of course) unsuccessful.
Throughout grade school I had at least 1 or 2 friends, mostly other outsiders whom the other kids made fun of. I convinced myself I didn’t care. We would read together at recess or play ESP games (I really wanted to have Extra Sensory Perception). I read all the time, even at lunch. I remember once, one girl I had been good friends with, got upset because I was reading at the lunch table. I didn’t understand why that was a problem. We were not friends for much longer.
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By middle school, I didn’t understand other girls obsession and interest in celebrity boys and I have never been good at faking an interest in something I couldn’t care less about. And so I drifted away from them because I couldn’t relate.
Once I got to high school, it was harder to make friends. I was at a new school and I didn’t really know anyone. The one girl I did know, had been one of the popular ones, and we weren’t exactly friends. I wasn’t socially rejected, more like ignored. I became invisible. I wasn’t interested in the things they were, I felt like there was no connection. It was an arts high school where I studied music, played violin. But it wasn’t my passion. It wasn’t typical because we were all mostly outcasts from normal schools. I didn’t hate it, but I still didn’t feel like I belonged. I don’t really remember much from that time.
I became depressed after all those years of not knowing what was wrong with me, not knowing why I am the way I am. I was in hidden emotional pain. By them time I got to high school, I started to cut myself in order to make the pain I was feeling tangible, physical, more real. It didn’t last long because my mom found out and because I didn’t want to hurt her, I stopped. I remember crying, not really wanting to die, but not knowing how to live. I still battle with depression constantly. I don’t always notice whether or not I’m sad, but after a while I will notice that I am not eating or am sleeping more than I should.
I was always the good girl, the innocent one, the one who never got in trouble, the one who never participated in class. I recently came across notes from my teachers when I was in grade school. I was in the special reading class briefly, even though I could read better than all of my classmates, they were concerned because I wouldn’t talk, at least not to them. They wanted to hold me back a year, they thought I should see a psychologist because I wouldn’t talk or participate. My parents refused. And at the time, I was glad they didn’t. It wouldn’t have done any good; I told myself if they made me go I just wouldn’t talk to them.
They called me difficult, stubborn, hard-headed, picky, as well as extremely patient, creative, intelligent.
I have never known exactly how friendships and relationships are supposed to work. I watched the other kids date and “go together” and it seemed like a complete mystery to me how they got together. I still don’t understand subtle signs, the nonverbal ones, and flirting. I will often have no idea if someone is trying to flirt with me, or if they even like me at all unless they say it outright.
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Other people have always been a problem for me. I never know what they are thinking, and because I know that since I can think of anything I want, so can they. So in certain social situations, especially in large groups, there’s a million things going through my mind as to what they could possibly be thinking, and since most non-verbal clues are meaningless to me, it is a complete mystery. So I become anxious, terrified if called upon to speak. Who know’s what all these people are thinking of me. They may laugh at me, or think what I say is stupid, or a million other things. Or I may make some social faux pas, and they will think “What is wrong with her?”, etc. And so I may freeze, becoming selectively mute, and I may or may not recover in a timely fashion. Recently I have learned to say that I pass, or some other phrase to release me from my terror.
The first time I remember this happening was when I had to interview to get into a particular college prep high school. I was 13 and they asked me a lot of questions that I wasn’t prepared for; it being my first interview and all. I am not good at speaking under pressure, especially when I am not prepared. I tend to stumble over words, unable to choose the correct ones. It is as if there is a disconnect between what I am thinking and my ability to translate my thoughts into speech. They asked why I wanted to go there, I answered “Because my friends are going here.” I didn’t have an appropriate answer prepared. I’m not sure what else they asked me, but what I do remember is that I froze. A million thoughts jumbled around and I couldn’t focus on anything or think of anything to say, and the longer I was silent, I worried about not saying anything and got stuck in a loop. “On no, I don’t know what to say, try to think of something to say, still haven’t said anything, this is awkward, what do I do now?” And instead of being able to answer the question, I fell into a feedback loop with no way out. Needless to say, I didn’t get into that school. Cynthia Kim describes this really well in her book “Nerdy, Shy, & Socially Inappropriate.”
People are always surprised that I can express myself very clearly in writing, but when it comes to speaking, I can’t seem to get my thoughts together. I stumble over words and probably come across as a little inept.
In college, my friends were my classmates, mostly the ones in my major. We shared many classes and spent lots of time together. I didn’t entirely feel like an outsider for once. I was included most of the time and I would always make sure I could leave whenever I wanted. I have a tendency to leave parties earlier than most.
Now as an adult, I am realizing more and more that my social skills are lacking. Most likely due to avoidance – I didn’t get to make too many mistakes and learn from them. And also because I think I miss out on subtle clues that others pick up on. I have many acquaintances whom I may call friends, but most likely they don’t know me very well. I will usually have no idea if someone likes me or not unless they say it outright. So even if I were to initiate activities with people, I usually have literally no idea if it will go over well. Which means I usually only talk to people in the venue where we meet, such as school, or work and rarely see or talk to them outside of those areas.
It is no longer a complete mystery to me how people get together romantically. As I’ve gotten older, people seem to be more direct (well they have to be to get my attention) and I haven’t had problems finding people who are interested, but I still feel like I don’t really know how they really work.
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All of this is why I think the particular master’s program I chose was extremely difficult for me. The classes were primarily based on the sharing of experiences & reactions in a group setting, as well as identifying and processing emotions and feelings. All things that I have difficulties with. I am much better with facts and in situations where there is a right and a wrong answer. Ask me to share my thoughts and opinions and I’m lost. No wonder it felt like a miracle I got through it.
I am writing this because it helps me process everything, so that I can remember, and learn my strengths and weaknesses. So that I can learn new ways to be in the world. I know now that my former adherence to lists and structure is necessary for me, and that I need to try to learn the subtle cues, to make friends and become the person that I know I can be.