Before I start, I would like to apologize for how long this post is. It’s the longest one I’ve ever written, heck, it’s the longest one I’ve ever seen. But I’ve had a lot of revelations, and I just couldn’t stop writing. I’m so excited! If you want to skim through, that’s fine. But this is a really, really big day for me.
The other reason I haven’t been updating much lately, is because of a book called “Look Me In the Eye” by John Elder Robison. In the course of searching for costume pieces, me and my sister went to the thrift store. We wandered around for what felt like hours, and I finally ended up in the book section, while she tried stuff on. I noticed three books were not shelved, and it bugged me that they were out of place, so I went to go see what they were. And the second book was that one. It caught my interest, so I read the inner flap, and I thought “Hmm, maybe I’ll check it out at the library some time.” I’d heard of Asperger’s before (one of my friends has it, but we’ve been out of touch for a while), and I’m always curious about mental illness and disorders. But then I stopped. I couldn’t read that book. After the way my therapist looked at me, when I admitted I was a hypochondriac, I couldn’t give myself any more information that would make my situation worse. I knew, I knew that if I read about Asperger’s, I would convince myself that I had it, and I could feel embarrassment in advance for that. It was bad enough that I was only mostly sure that I had OCD. I couldn’t go making myself think I had autism, too. That would just be ridiculous. So I decided that I absolutely should definitely not read that book. But then my sister noticed the sale. And I noticed a couple of other books I would like to read, and it was buy two get one free. So, I decided to buy the book after all, but I would not, could not, let myself believe that I had Asperger’s.
I started reading reluctantly, carefully, reminding myself every page that I was not allowed to have Asperger’s. And then I started getting into it. Robison is a good writer, and I loved the way he saw the world. It just… made sense. But there were things he did, like playing elaborate, and sometimes even cruel pranks, that weren’t me even in the slightest. I could never, ever play a trick like that on someone. I feel guilty telling even the tiniest fib, even when I’m supposed to for a joke, or a surprise, or sometimes even on stage. So, I could relax and enjoy the book, because I clearly did not have Asperger’s.
Unfortunately, a few chapters in, there were far too many parallels for me to idly read it anymore. I felt guilty again, because I was starting to wonder if maybe I was a little autistic, except that I wasn’t allowed to indulge my hypochondriatic urges. So I kept stopping myself, to work on my sewing, to surf the internet or do chores. But I was always drawn back again.
Right from the beginning, he had trouble socializing with other kids. Like me, most of the people who would talk to him were adults. Otherwise, he continued to retreat further and further into his own obsessive world. I was constantly reading, ever since I could remember. When I didn’t have a book to read, I would feel extremely uncomfortable. He, too, would drink in books and textbooks, feeding his need for stimulation and information. Like me, he had a deep need to know everything possible about whatever he was interested in. (Like me, he wouldn’t repeat behavior that caused him suffering, like in preschool, when a little girl didn’t want to talk to him and got him in trouble. He never spoke to her again.)
I wasn’t exactly the same as him, but it got me thinking. Maybe my anxiety is just from over-stimulation. When I was a kid, and I was stressed out, I would lock myself in the bathroom (the only room without windows) and turn the lights off, waiting until I had calmed down to come back out. I could never sleep with the lights on.
When I’m in a crowded room, I can barely speak. There’s too much noise, too many people. At parties, when I can hear two or three conversations going on at the same time, I never know which one I’m a part of, which one I’m supposed to respond to. So I just listen. It’s even worse when music’s playing. I love music. I have a hard time holding a conversation with just one person when there’s music playing.
He talked about learning the “rules” of socialization, how hard it was, how many things didn’t make sense. A lot of people would be surprised that it’s hard for me, because I’ve worked so hard on it my entire life. But I often don’t know what to say. When someone tells me something bad happened to them, I don’t know if they’re asking for help to fix it, or if they’re just telling me because… they wanted to tell someone. I have no idea why someone would tell someone something like that, if they didn’t want that person to help them, but I’ve learned that people do that, all the time. When they tell me their dog died, I know that I can’t bring their dog back to life, and I’m not going to give them mine, so clearly there is no solution to this problem, and they were just telling me because they wanted me to know why they were sad. So I say “That’s terrible,” or “I’m so sorry.” And then there’s “if there’s anything I can do, let me know,” even though there is not anything I can do, and I know from experience that even if there was, they would not let me know, because people don’t actually mean it when they say that.
He made so much sense. This was the first book I ever read that felt like it was written in my voice. Even though he was doing things I would never do, and I do things he would never do, the way he was thinking and talking about it, the way he saw the world made so much sense. Could I be autistic?
But I’m not allowed to pick another disorder. I picked OCD. I told my therapist I have OCD. I told my sister and my parents that I have OCD. I told you guys that I have OCD, I even named my blog “OCDon’t” because I have OCD, and I’m not allowed to change that.
Too bad.
But finally, I was in the car with my mom. We were going to the grocery store, and I had spent the entire ride up, the entire time at the store, and half the ride back, trying to work up the courage to ask her if she thought I might be autistic. I wanted to ask her how I acted as a child, to see if it matched what others have said. Because I never quite knew what was different about me, just that I was. My childhood was normal to me, because it’s the only one I’ve ever had. Finally, I started with “I don’t know how to start this conversation, but I’ve been wanting to talk to you all day,” because saying that I didn’t know how to start the conversation would therefore start the conversation. I talked to her about the things I’ve read, and some of the parallels I saw. I told her how reluctant I was to even investigate the possibility of it. At one point, I think I even accused her of messing me up, (and of course, tried to backpedal) She mentioned that I was always so “Independent”. I’ve never, ever forgotten how, when I was seven, she said that I was “Independent”, that I never needed help with my school work. Ever since then, I took that to mean that, A, I didn’t need help ever, and B, I wasn’t allowed to ask for help even if I wanted it, because I didn’t actually need it. I want to say here, that I love my mom, and not only did she do the best she could, she did better than I could have asked for as a parent. I honestly don’t know how she could have done better. She didn’t know what was going on in my head, and I didn’t know how to communicate to her what was wrong, what I needed. She intuitively figured out a lot. I’m still amazed at what she knows and what she did, even though I couldn’t tell her what I needed as a child. So, naturally, I realized I may have insulted her, and I tried to cover that up. I really, really hope I didn’t hurt her by saying what a permanent impression was left on me with the label “Independent.”
And there’s another example of my social difficulties. Usually I’m really good about saying the right things to people, but every once in a while, something will pop out, and I’ll realize too late that it was wrong. Sometimes it will be blunt and harsh, but usually it’s just a little off. I’ll never know just how bad it is, unless it’s really bad, and gets a reaction out of people. Mostly my little sister (but my big sister too) will snap at me, saying “Penny! What are you saying?!” When I didn’t have them there to help me, I used to stress out a lot over the mistakes I made. But then I learned a trick: comedy. Everybody makes mistakes. I don’t notice other’s as much as mine, but nobody’s perfect, so I’m sure it happens. So, when I make a social blunder, I could either: A, pretend it didn’t happen, and let everyone think I’m stupid, B, fix it and try to cover up how embarrassed I am, or C, laugh, and make them laugh. Using C has made me seem a lot more easy-going to the on-looker, and it’s given me an escape clause for screwing up. People love to laugh. Laughing makes you feel good. Laughing relaxes you. When I mess up, I laugh and say “I can’t believe I said that!” or “that came out wrong!” or something along those lines. Sometimes I’ll say the more correct translation afterwards, sometimes I won’t. But then the people around me are more at ease, and I have diffused what could have been a painful situation.
But back to my mother. When I said to her these things, part of me was terrified that she would tell me I was wrong, that I didn’t have autism, and that I was just making this up. The other part was terrified that she would tell me I was right, and I would have to go to my therapist, and my family, and my blog, and tell all of you that I was wrong, that I don’t have OCD, that I have autism, and I’ll have to figure out how to change the name of my blog because I didn’t want to be misleading to the passerby.
This is how I think.
And you know what she said? She said that over the past little while, she’s been doing some research on her own. She wanted to figure out why me and my big sister have been having such a hard time lately. And her guess was autism. She didn’t know what Asperger’s was (I kept using that term, instead of the more general, autism), and so I explained that it’s basically high-functioning autism, that the person has autism, but they manage okay socially, they just have a hard time, and they’re unusually smart and a little obsessive. Anyway, my point is that she already suspected that I had autism before I did, but she didn’t see a need to tell us, because she wasn’t sure what good that would do. Now, I can see her point of view: we’re already adults. It would have been a lot more useful to a mother to know that her kids had autism when they were kids, so she could help them better develop and adapt. But now that we were grownups, she can’t be so much of a mother to us anymore.
But I would have liked to know. I tried not to get mad at her, how could she have known what it was like for me, growing up the way I did? How could she have known how the one label I needed wasn’t Independent or Weird or Super Nice or Great Listener or Quiet or Smart or even just Different. If I had grown up knowing that I was autistic? Everything would be different. Even now, I have a hard time explaining to people what I think. Talking to her, I told her that no one explained to me that it was okay to be different, that socialization is hard for me because it is, not because I was broken or bad or stupid. That it’s okay for me to like the things I like, like reading and singing and hair and music and doing laundry and looking at school busses and learning stuff about anything and everything and sometimes just sitting on my bed, completely still, just thinking and being. Nobody told me those things were okay. My whole life, I’ve been trying to fix myself. To stop fidgeting, and to hate math, and to pick one and ONLY ONE thing to like, to go to parties and kiss boys and speak my mind but DON’T hurt anybody’s feelings.
I wanted to say all of that, but all I could say was “nobody told me it was okay to be different,” before I started crying. And she told me that she had said it before, but I must not have been listening, or I didn’t understand. And that makes sense, because I don’t get a lot of the things people say to me. But I think I thought it meant that it was okay that I had curly hair, and no one else did, and it was okay that I didn’t have a tan, so I was paler than everyone else, and it was okay that I liked school, just don’t tell anyone that because they don’t understand. That’s what Different meant to me. Everything else that I was, it wasn’t Different, it was just Wrong.
But I couldn’t say any of that, either.
My mom said I should look it up, find out if there’s anything else I should know about autism, to find out if I really did have it. And that I should figure out what that means to me: autism isn’t a disease. If I have it, nobody’s got a magic drug that will make it all go away. Nobody’s going to “fix” me. And that’s okay. But learning to understand the difference between the way I think and the way “normal” people thing, and learning that that’s not a bad thing, would mean the world to me. If I can learn to better understand the people around me, I can get along with them better, sure. But figuring out why I do the things I do, and learning not to be embarrassed by them, will help me so much. I think that’s the reason why I have so much anxiety: because the weird things I do help me focus and get rid of all that noise, but I’m not supposed to want to do those things, because they’re weird and normal people don’t do that, so I shouldn’t do them, and then I feel embarrassed and guilty for doing them, so they make me more anxious instead of less.
But I got online, and I started doing research. There was still a little part of my brain saying “we’re not allowed to have autism, so you have to look at this to disprove that theory, not prove it.” They started out by saying that no to autistic people are alike. They said that most like trains and engineering and computers, but I knew very little about any of those growing up, and I only vaguely have an interest in computers now, so I started panicking because I was wrong and I don’t have autism, but wait, they said “most” not “all”, so it’s okay, I can keep reading. A lot of the things they said, it just made so much sense. They didn’t just talk about the outside appearance of behavior, they talked about the reasoning behind it. And I couldn’t believe some of the things they said, some of it felt like they had taken it right out of my head, out of my own life, and put it there on paper.
From what I've seen so far, there are two different ways autism manifests: either the autistic child will be hyper-sensitive, or hypo-sensitive. I don’t know if you can be hyper in some areas, and hypo in others, but it looks like most of my problems come from the hyper-sensitive end. I’ve always been a picky eater. I was always absolutely terrified of trying new things, and foods of certain textures were absolutely disgusting to me. Onions and bell peppers and water chestnuts: anything that was half-crunchy, especially if it was mixed in with soft stuff, was awful and I hated it. I couldn’t eat fruit or vegetables unless it was mashed up or juiced. I couldn’t understand why I hated tomatoes, but loved spaghetti, or why I hated grapes and oranges but I loved grape juice and orange juice. My parents couldn’t get me to try pizza until I was a teenager, and I couldn’t eat anything other than cheese pizza until this past year. I thought I was a whiny brat: why couldn’t I just like food like other people? Why couldn’t I try new things? Why was it all so scary, or disgusting? As an adult, I’ve learned to suck it up, and I actually get mad at anyone who brings up my pickiness. If they ask in advance, I’ll say “I don’t like onions” or something like that. But if they don’t, I’ll just eat it. I guess a great analogy would be that I spent years, sitting at a table watching my family and friends eat worms and beetles, all while they look at me like I’m the crazy one, I finally learned to suck it up and eat it. Some of it actually tastes good, and I can get over the texture by focusing on something else, or swallowing it as quickly as possible. But you won’t hear complaining out of me.
That’s just an example of taste or touch. They talk about all of the senses. Like hearing: if you’re a hypo-sensitive autistic person, you might like things really loud. Little kids tend to slam doors and smash things. But I was hyper-sensitive. Like I said before, I have a hard time having a conversation with more than one person, and if music is playing I have to focus extra hard to tune out one or the other. Usually it’s easier to focus on the music. Towards the end of my teens, when I got more comfortable singing out loud when other people were around, I started singing more and more often. I remember one time, I was in a crowded, chaotic room, and I didn’t know what to do with myself, so I started singing. And I started feeling better. I had a grip on myself, on reality. It was nice. And then someone snapped at me, because I was “making too much noise” and so I stopped and retreated into myself. I still do that sometimes, just singing softly to myself when I’m stressed out, but I always have to stop myself if it’s making other people distracted or angry.
I find that one really interesting, because according to the website I read, sometimes autistic people moan when they’re stressed out, to block out all the extra noise. I never did that. It was always singing and music for me. When I was little, and less inhibited, I would sing then, too. I forgot about that, because I spent most of my life terrified of letting other people hear my voice. I even had a tune I wrote myself, that I would hum, over and over again, until it felt too repetitive and I stopped myself.
Then there’s the visual aspect. I don’t think I’m as sensitive in this area as the others, which is fine, but I do have some problems. Remember back when I was talking about how I don’t like wearing clothes with patterns on them? Looking at this through an autistic lens, I think this is because there’s too much chaos. I can’t handle all the colors coming off of me, it’s distracting, and I feel like everyone’s staring at me when I do. When I go to the mall with my friends, and everyone’s checking stuff out, asking each other’s opinions, trying stuff on, I shut down really fast. I can only handle shopping for a few minutes at best. All the colors and textures everywhere, and I’m not even sure what stuff will fit me or if it’ll look good on me (why would I try it on if it’s going to look bad on me?). Everyone asks me “why don’t you want to try stuff on?” and it’s because I find something wrong with every article of clothing I find. After an hour or so, I stop seeing them at all, and I stop wanting to even try to see them. So I follow along numbly, singing to the music the stores are playing, waiting for them to get bored and want to go home.
That’s another thing. I’ve got this weird need to sing whenever I know the words to a song, sometimes even when I don’t know them. So when we’re flipping through the radio, and I hear a song I know, even if it’s a song that I hate, I sing anyway. Then whoever’s in charge of the radio will leave it there, and say “I thought you liked this song?” when I’m thinking “Of course not, I hate this song. What would give you that idea?” I’ve trained myself not to sing to songs I don’t like when other people are around, so they won’t get the wrong idea. But it’s hard. Driving in the car, walking through a mall, hanging out at a party, if music is playing, and I’m not singing, I feel disconnected from the world. When I lost my voice last year, and I had to go for a week or two without singing, I just felt depressed, alone, and empty the whole time. So, if the radio’s on, I sing. If I’m with people I don’t know very well, I sing softly. But I always sing.
There are a couple other things that some autistic people struggle with, like balance, and knowing where your body is at any given time, that I haven’t notice a problem with, so I won’t talk about them here. But the last one, the one that has brought me the most shame and suffering, is touch. I have sensitive skin. I have let people braid my hair two times in my life, as far as I can remember. And it hurt like hell. I brush my own hair. I even cut my own hair, ever since I was thirteen or fourteen and I realized I could get away with it. I can’t stand wearing hats or hairbands. They stress me out. If I wear a bun all day, I get a headache, things like that. All of this led to my obsession with hair: I had to do my own hair, so I wouldn’t be in pain. So I learned everything about it, and, viola, that meant I learned about everybody else’s, too. I’ve been braiding my sister’s hair since I was six. For several years, I cut, dyed, and highlighted my mother’s hair, until I went away to school, and she had to go back to the salon. This is also the reason why I cut off all my hair. It drove me crazy, having it touch my face and neck. I wanted it all gone, but I wasn’t allowed to shave my head, so I cut it off, and I was so happy. I’m wondering, now that I’m absolutely certain that I’m autistic, if this means I’m allowed to keep my hair short. I’ve been trying to let it grow out, to “ask forgiveness” for wanting short hair, because just about every girl I know has long hair, and girls are supposed to want long hair. I don’t know.
But my hair isn’t the worst part of it. I don’t like people touching me. Sometimes it’s okay, sometimes it’s even nice, so I can’t explain it very easily. Like hugging. I’m fine with hugging now, but I didn’t like it so much as a kid. Now I hug all my friends automatically. Handshakes are fine, too, if the other person knows what they’re doing. But other than that, touch is a very, very big deal for me. My friend with Asperger’s explained that a lot of times, having people touch him is physically painful. I don’t feel that way, so I felt that I had no right to complain. But that doesn’t mean that it doesn’t hurt me, and I’m finally beginning to understand myself that way. My dad is a very sweet, caring guy. When a situation is stressful, he might reassuringly pat my shoulder or my leg. When we’re all sitting on the couch, watching tv, there’s not a lot of extra room. He might lean my direction or accidentally brush my arm. Every once in a while, this doesn’t bother me. But mostly, it feels like I’m being assaulted. Which is very confusing, because I know my father, and he has never, and would never attack me in any way, especially not like that. But that’s what it feels like. And I can’t tell him to stop, because I know why he’s doing the things he does, that he just wants to be close to his family, to comfort them when they’re scared or hurt. But it only makes it worse. And then I get mad at myself, because I’m mad at him, and I’m not allowed to be mad at people, especially not my father, so I sit there, fuming, stiff as a board, as I try not to squirm away. We sit in church, and he lovingly puts an arm around my shoulder, and I want to cuss at him, my father who I love and trust, who I know loves me and would protect me from anything and anyone, except for himself, because I don’t know how to tell him he’s hurting me with his affection.
I can say “no” to other boys. After my first boyfriend, I learned that it’s okay to do that. I can tell them “I’m uncomfortable” or I can walk away or push him off of me, because you’re allowed to do that. I can tell them I’m not attracted to them, even if I don’t really know if that’s true, because I more or less like all guys equally but when they touch me it makes me want to scream. But I can’t say “no” to my dad, because he’s not flirting, he’s not a potential mate, this isn’t a date. He’s touching me because he’s family, and that’s what family does. Only even the word “touch” makes me uncomfortable, and it’s only getting worse the harder I try to convince myself that it doesn’t.
Because the world can seem so big and scary and confusing, people with autism have ways to try and make sense of it. I mentioned a few examples above of of what is called self regulating. I do a lot of things, that make so much more sense now that I look at it as autism. Like my hand-smelling. The more stressed out I am, the more I need to smell my hands. It’s like “I’m here, this is what’s going on right now”. When I’ve been scratching my head a lot, my hands have a particular scent, and when I smell them, I feel this sense of relief. The only way I can explain it is “this is me”, or “I’m right here”. It helps me calm down to remind myself what I smell like, for some reason. I remember when my dad was teaching me how to drive, he had to remind me repeatedly to keep my hands on the wheel, because, since I was stressed out, I kept smelling my hands and touching my face. Another one like that is what my pillow smells like. I never washed my pillow as much as I should have growing up, so it was probably all full of bacteria, but it smelled like me, and when I went to bed, I was home, and everything was okay. I never told anyone this, because you’re not supposed to like the way you smell, because everybody is always covering it up with fancy soaps and perfumes, and on the rare instances when they show people smelling themselves on tv, it’s to find out if they stink or not (like their breath, or their armpits), and therefore whether or not they are dirty. So smelling yourself, and in particular, liking to smell yourself, was obviously bad, and I shouldn’t tell people about stuff like that.
Another thing I do to self regulate is related to touch. I touch my face mostly, but sometimes it’s my arms or my legs or back. Then there’s scratching. Sometimes I just scratch and scratch, mostly my arms and back. Not because I itch in a physical sense, but just because I need that contact. Looking at it now, I feel like that was always the way to remind myself where I was. “That, right there? That’s me. I’m here, this is me, and everything else is not me.” It was really hard to adapt when I worked at that restaurant, and I wasn’t allowed to touch my face. I never touched my face with my hands while I was wearing gloves, but my boss caught me rubbing my face with my wrist and told me not to do that, so I stopped. And then I started rubbing my face with my shoulder. It worked: my boss didn’t get mad at me, and I had a way to express that need. However, at the end of the day, I noticed my shoulders were lighter than the rest of my shirt, because of all the rubbing. I actually ended up rubbing off some of the dye, which would have been funny, if I didn’t mind the color being uneven. Which, I do, so it wasn’t at the time.
I think my skin picking developed like it did because I was very well acquainted with my own skin. I knew every inch of its surface, because I was always touching it. So when bumps appeared, I knew about them right away, and it bothered me that they were there. And I couldn’t stop touching them, so they were constantly in my mind. And they had to not be there. Skin is supposed to be smooth, and mine was not, and I needed to fix that. So I started picking. It hurt a lot at first, but I got used to it. But my mom told me it was making my arms worse, so, over the next several years, I trained myself to stop. Then the acne hit my face, and my sister taught me about popping. You’re supposed to pop pimples. So that’s what I did. It hurt a lot worse, then. And sometimes they didn’t pop the way they were supposed to, so it was harder to deal with, and it hurt so much more. But there were bumps on my skin, and they’re not supposed to be there, and pimples are supposed to be popped, so I popped them. It took several years, but I stopped feeling the pain, and I only saw the need to pop more pimples.
For a couple of years, I was pretty good at leaving my face alone, but that only migrated to my back, because people didn’t see my back. Sometimes, at the end of a long, hard day, I would sit on my bed, and just scratch and scratch, bursting bubbles and peeling scabs off my back. It was how I relaxed.
It just occurred to me, another auditory self regulation technique I’ve had, ever since I was little. It got stronger when I stopped singing, and it didn’t go away when I started. I tap my teeth. It’s an almost constant little drum solo that only I can hear, that (I assume) no one else can see. When I’m stressed out, especially right before a performance or something, my jaw gets so sore and tired, that it makes me worry if I can sing normally with it all tired like that, which makes me more stressed out, and then I just have to sit there, awkwardly holding my teeth apart, so I’ll stop tapping.
Reading that article has been so helpful, and I only read it yesterday. The way they describe it, from a scientific point of view, and from other autistic people, it makes so much sense. It means that it’s okay for me to do these things, because it’s just the way that I make sense of the world. If everything is louder, brighter, and more confusing to me than it is to “normal” people, it makes it harder to sort out what’s going on, and what I feel about them. Self regulation, to me, just means that I’m pausing to remind myself what’s real, what’s me and what’s not me, and to give myself a little room to figure things out.
It makes me think of the new Superman movie, Man of Steel. I saw it a while back, right when it came out, but there’s one scene of the movie that just hit me, hard, and it’s still a really big deal to me. It’s the part when Clark Kent (or Cal El, if you prefer), is sitting in the classroom, and he can hear everything, he can see everything, and it’s just too much. He runs away and locks himself in a closet, something I have done on many occasions, covering his ears, trying to make everything stop. Then his mother comes. He says the world is too big. That everything is just too much. That’s what autism is. We are all little Kryptonians, stuck in a big, confusing world. We see everything, we hear everything, and we feel it to painful precision. And it is too much. When he says the world is too big, we I don’t know if “normal” people truly understand what that feels like, but I do. And then his mother says, “then make it small.” She tells him to focus on her voice, that her voice is an island, far away from all that noise and confusion.
I never figured out how to tell my mother that everything was too much. But I did develop my own little islands, to escape for a while. Locking myself up in the dark. Reading books were the funnest, most exciting escape. Delving into novels, encyclopedias and textbooks, drawing out more and more new and exciting information, it was all a way to keep getting sensory input, but at my own speed, and only one thing at a time, instead of everything.
Imagine you’re swimming through water, so bright and random and confusing that nothing you see makes sense. There’s noise but you don’t understand it. There’s feelings but you don’t know what they mean. Then you find an anchor. There is something that is solid and makes sense. It gives you something to compare the rest of everything to, to try and figure it out. That’s what self regulation is. That’s what our obsessions are for.
One more thing, and I’ll wrap up what is probably the longest blog post in the history of blog posts.
On reading about autism, the very first thing that stood out to me, was rules and routines. Autistic people don’t feel like they’re in control. Everything is crazy and confusing, so if we find something, some rule, like “if I let go of this ball in my hand, it will fall”. If we learn it, it’s nearly impossible to unlearn it, at least in my experience. I learned you don’t touch the bottom of irons when I was four, and I didn’t do it again. I learned you don’t slide down poles, because you get paint shoved up your toenail, so I never did that again. I learned that people don’t like it when you say you don’t like their food, so I stopped doing that, even if they directly asked me. I learned that sometimes, dogs don’t want you to pet them, so you have to ask nicely. I learned that if you don’t look in your blind spot when you change lanes, you will break someone else’s car, and miss school, which is possibly worse. I learned that if you give people advice they didn’t ask for, they will get mad at you.
These are the rules. There are many more, like, “you have to shower before you leave the house,” or “all of the groceries must be put away as soon as we bring them in the car”. Problem is, sometimes people want me to leave the house before I get a shower, because it’s early or we’re doing something that’ll be dirty. Sometimes other people don’t put the groceries away, because they’re tired or they need to make dinner, so I have to put them away myself, because they can’t be left on the table. Another rule is “if you promise to do something, you do it no matter what.” Or “you’re not allowed to tell people you are sad, or angry, or hurt, and if you’re happy and everyone else isn’t, you’re not allowed to tell them that, either.”
As for routines, my therapist kept asking me about them, which I thought was weird, because everybody has routines, so I didn’t tell him much about them. But I do have them, and it feels like I can’t function without them. Things like how to start my day, and how to finish my day (although I break the rules for finishing my day all the time, because I’m so tired. It bothers me, and I often stay up a lot later than I would have, trying to convince myself that it’s okay to skip some stuff to go to sleep earlier).
I know I’ve mentioned this before, but in the morning, I have a few things that need to happen, mostly in a specific order. When I get a shower keeps bouncing around, and it’s a source of tension for me, every day, but the rest of it stays the same. I get up, go to the kitchen, and start making breakfast. I have to have my egg pan, and if it’s dirty with meat and I need to clean it, that bothers me. It actually even bothers me if it’s been put away, because I need to find it, but that’s not as bad. I put my egg on, put my toast in, get out a glass and fill it with milk, then I flip my egg over, turn off the stove, and if I time it right, that’s when my toast pops up and I butter it, making sure to get the butter (okay, margarine. I would never eat butter) to every edge of the toast. Then I get a plate, and put the egg on the bread, and the bread on the plate. Then I have to find somewhere to eat. For a long time, I would eat in my room, because nobody kept the table clean, but it’s depressing and stuffy in there, and my room constantly smelled of egg because of it, so I sit in the living room, or I clean off part of the table and then I eat my food, and then I am able to have a civil conversation with people and figure out what to do with my day.
I do this every single morning. I have for years. It irks some people in my house, that I would eat the same thing, or that I cared about what pan I use, but it is what it is. I just make sure not to complain about it, because complaining is wrong, especially when I know, logically, that it shouldn’t matter how I make my breakfast or what I eat, just as long as I get something to eat.
Well, the other morning, my dad was already in the kitchen, making breakfast for himself, when I came out. He was using my pan. I’m not a big fat baby, so I decided to say nothing. He teased that he was using my pan, and I teased back with, “Oh, noooo, what will I do?” And I got down the old egg pan, which is the same size, it’s just not as slick. I added extra oil because I remembered how much it stuck, and set about making my breakfast around my dad. Then my sister came in, and now there were three people in the kitchen, all talking and making breakfast and moving around. The egg stuck, and ended up being more scrambled than anything else. It was fruitlessly dripping with way too much oil, and I tried to dab it off, all while my sister made a joke about how much oil I used. Then I went to butter my bread, but there wasn’t enough margarine out, and I was so angry and frustrated at this point, that I just smeared what was there on, which ended up being only half of my toast, and put the egg on it. I sat down to eat, trying to shove it in my mouth as fast as I could, before I started snapping at people, because, even with my routine ruined, I knew that the point was I needed food, and when I was hungry, I got mean. I knew that if I could just finish my breakfast before anyone started a conversation with me, I would be fine, and I wouldn’t hurt anyone’s feelings. But I was so mad, I was actually shaking, and I was furious at myself for being mad, because how could my dad possibly know what breakfast meant to me, and how upset it would make me that he ruined it? I had spent my entire life working to hide things like that from anyone and everyone.
But my dad noticed I was upset at that point, and asked me what was wrong. I said nothing, because I knew I was being stupid and petty and I would feel fine once I got my food down, but he asked if it was about the pan, and I started explaining and then crying about how I can’t stand that I’m mad for such a stupid reason.
Surprisingly, he understood what I said, through all of that, and he said that first of all, it was good that I realized that it wasn’t a good reason to be upset, and second that he would keep it in mind in the future, now that he saw how much it bothered me.
Oh, my gosh. Wouldn’t that be amazing? If the people I loved knew what things they did hurt me a lot? Growing up, I believed I couldn’t tell people what things bothered me, because if they did it un-knowingly, then I could easily forgive them. But if they knew about it, and did it anyway, that would hurt worse than ever. My dad still forgets that I don’t like onions unless they’re pureed, and he cooks it in stuff all the time. But I tell him, over and over again, that I don’t like it. This is why I don’t tell people about what hurts me. It’s like the girl who had a deep fear of lawn gnomes, and ended up having her friends chase her around with one all the time, because she told them about it. If they didn’t know, it never would have occurred to them to shove a lawn gnome in her face.
Suffice it to say, I have trust issues.
But breakfast is a big thing. I get a lot better grip on the world and myself if I have my morning routine. It is my oasis in a desert of confusion.
I need to learn how to tell more people about these things. Not everybody, necessarily, but the people I love, for sure. If I can do that, maybe I can get along better with them, and myself, too. Once I tried to explain to my sister how scared and confused I am when I don’t have a plan, or if the plan gets messed up. We were going to go to the gym that day, after she got off at work. She said we would go “after two”, which, to my autistic mind, meant “at two”. Two o’clock rolled by, then three, then four. I sat on the couch and waited, trying to fill my time usefully, but really, just killing time. I texted her, trying to to nag because people don’t like that, but she didn’t respond for a long time. When she finally came home, she was exhausted because she had just finished a twelve hour shift that was supposed to be more like eight, and I knew this, but I decided to try some self expression anyway. This is when I told her that not knowing is the worst thing for me. I could understand that they held her late at work, and that’s fine. But she needed to tell me what was going on. She told me she didn’t know herself, and I told her “that’s fine,” that she should just tell me that, instead of leaving me waiting and killing time and hoping she hadn’t forgotten about me and just went there without me. But this made her mad. I realize that it’s harder for me to communicate with tired people, and that I shouldn’t have started the conversation right after she got off from work, but by then it was too late, and she was upset, and I was trying to fix it, but I didn’t know how to make her feel better and still understand that she hurt me today and could she please not do it again in the future.
People are hard.
I need to learn how to tell people about stuff like this, without them getting mad, and without them using them against me.
But, to sum up, I am autistic. I was going to wait until I finally saw my therapist again to tell you guys, but I know it, from the inside out, this is what I am. Every time I think about it, I want to cry, because this means that I’m not bad and need to be fixed. I can just be me. The things I do are okay. The things I feel are okay. I’m not okay yet, but I’m getting there.
Hello, world. I’m Penny, and I’m autistic. It’s nice to meet you.
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