"But That Won't Get You Anywhere"

I write fanfiction. I like to write fanfiction. I have notebooks full of it, and computer folders even more so. I've been told it's quite good, for fanfiction. That I have good technique, and that it's like reading a published book. I'm my own worst critic, so I can't say for sure, but having been told so so many times I guess there's probably some truth to it.

Seven years ago, I took a creative writing class. Besides the fact that I had trouble understanding some of the assignments (we would often read a piece of fiction and then be told to write "in the same style" without a serious explanation of what that style was), one of the biggest disagreements I had with the instructor was that I used fanfiction for most of my assignments. I followed the directions as best as I understood them, but I put them into fanfiction. The instructor was critical. She seemed to think this was a phase, and not a helpful one for me. She seemed to think I would only be able to advance in my writing when I stopped writing fanfiction.

Five months ago, I was handed half a script. I had a cast already ready, a date set for the performance. We'll write it along the way, he said. It was an interesting challenge, a decent story, and a chance to direct that I would never have passed up. But a few weeks passed, and it wasn't coming together anywhere near fast enough. So I sat down, and over the course of a day and a half I re-wrote the entire script. Fixing the scenes that were already there, filling in the blanks that were left to be finished, writing entirely new scenes to elaborate on points that weren't delved into deeply enough. And somewhere along the way it occurred to me: the skills I use to write fanfiction were the exact same skills I used to write this play. Every warning I'd been given all those years ago had turned out to be completely wrong. Those skills had served me in a very real way.

I look at my life as an autistic person, and in some ways, this isn't an unusual scenario. So many people in my life had ideas about what I should be doing, in order to be successful. Often they boiled down to the idea that I had to change what I was doing in order to succeed. And looking back on those suggestions, I can't think of a single one that contributed to my success, or a single one I left unfollowed that had the dire consequences I was told about.

When parents of autistic children ask how to support their children, I tell them to take the skills the children already have and nurture them into something they can do with their lives. Many things and behaviors that seem useless can be turned into something that is useful, if the right outlet is found.

They told me fanfiction wouldn't get me anywhere, but last month, five audiences, several hundred people, had a different perspective.

They Put Me Next to a Group That Wishes I Didn't Exist

I'm very active on my campus, and I'm quite proud of my position as the president of a small student organization. Thanks to a few "paper"work screw-ups, I had to scramble to get us a place at this month's Student Organization Fair, our best chance this semester to reach the campus community. We got the spot, and I was proud to represent our organization.

The fair was not what I expected, but it was okay for the most part. The less-than-stellar turnout can be looked past, my feet have finally stopped hurting, and the fact that the member who had all the literature no-showed becomes less of an issue when one considers that the people who gave my table a second look can probably be counted on one hand. What I can't seem to push aside is who was one table over. Because they put my student organization next to the table for our campus' all-new Autism Speaks chapter.

Now, they don't know that I'm autistic. My organization is not an Autism organization per se, although I've pushed to get more disability advocacy on our list of issues. The assignments were alphabetical, nothing more. But for me, it was more than just an unfortunate coincidence.

I didn't feel that there was anyone I could turn to to rectify the situation. Like it or not, I respect the rights of this organization to share their viewpoint, so asking the organizers to ask them to leave wouldn't have been an option to me even if I thought there was a chance I'd be taken seriously. I could have asked to be moved to another table, but there were two problems with that.

The first is quite straightforward: in order to explain why I was not comfortable with the arrangement, I likely would have had to disclose my Autistic nature to whoever I spoke to. I'm openly Autistic, but that doesn't mean I want to blurt it out to the virtual strangers running the event. There are still too many stereotypes associated with autism to make that advisable.

The second is more complicated, and that is that I would have had to explain exactly what about that was so unsettling as to create a situation in need of resolution. I did attempt to explain this to someone from the table on my other side, a disability advocacy group. Her reply was that she wants to "reach out to all advocates". I attempted to explain, but I felt I wasn't getting through even to someone who was a member of a group advocating for "diverse abilities".

How, then, to explain to a group of event organizers that this was not like putting the College Democrats right next to the College Republicans (and the judgement in that case is, in my opinion, questionable in and of itself). This is an organization that believes I should not exist. An organization that believes that my body is not rightfully mine, but rather something I have no right to. An organization that has said that people like me bring suffering on our families. And no, I don't believe that every person at that table believes these things, but that is what that blue puzzle piece means to me. It means an organization that advocates torture, that advocates silencing voices like mine.

I don't know the answer. I'm not even positive I know the question.

I Had To Break Before I Could Be Fixed

November 12th, 2009. The day the world crashed down on me.

The actual event that caused that crashing took place the day before, and that is the day I mark every year. On November 11th, the idea of Veterans' Day takes a backseat to that which changed my life. But on November 11th, 2009, I had no idea anything was wrong.

It was four o'clock in the afternoon where I usually lived, but I was thousands of miles away on the world's most amazing class trip ever and it was ten o'clock at night for me. Looking back, I think something inexplicable unsettled me that night, but I can't be sure that it's not some form of hindsight bias, that I wasn't actually unsettled because someone bumped into me in a theater lobby or something.

The next day, the teacher in charge of the trip said he wanted to get us together and speak to us. I thought he just wanted to go over details of the day because there was something on the daily itinerary that was confusing to me and I thought others might have the same concerns. It wasn't until he insisted on a closed room that my guard went up. Something was going on, something big.

We got the closed room. Seventeen of us, not counting the instructor, sat in a room; two were missing still, but by now we all knew something was wrong. A few people were crying; they'd already heard the news from someone else. So he told us. Told us that a classmate, someone we all knew, someone most of us knew well, was dead. No warning. No chance to say goodbye. Just gone.

I look back on that experience now and there's a lot to be said about it. I barely cried that day, a few tears was all. It wasn't until over a month later that I really broke down over it for the first time. If one were to look at the way I was that day, it could be used as an example of how autistic people don't care about the people around them, so much so that they don't even care if a friend dies. But, you see,  I did care. I just didn't have the way to express it. I was in shock. But the thing is -- we all were. No one burst into tears the moment we were told. We were too stunned to cry. When one of the latecomers joined us, our instructor repeated what he'd told us. That was when most of the people in the room burst into tears. It just took me a few months instead of a few minutes.

I also understand now that I had to fall apart before I could start to put myself back together. My state of shock wasn't something I controlled, of course, but the breakdown, even if it came a month later, was an essential part of my healing. I'm sure, to the outsider, it looked like I was composed and handling the situation well. But I was handling it by, however unintentionally, not handling it, and that just postpones the inevitable indefinitely until it's dealt with properly. I suffered a lesser, but still substantial, loss this past summer. This one wasn't quite so sudden, and I was able to deal a little better. I cried. A lot. And then, a month later, I was okay. It's a process.

Stolen Pieces

I am not a puzzle.

At one time, I think I believed I was. At any rate, I accepted the puzzle logo (although it was the multicolored puzzle, not the single blue piece) as a description of the condition that is such a vital part of the person I am. The autistic person I am.

I don't believe that anymore. I am a puzzle only in the perception of the people outside of me looking in. And even then, a very few people can look past that. To those people, I am not puzzling, but a wonderful, dynamic, different person.

I am not a puzzle, but I still feel sometimes that I'm missing some pieces.

Today I looked at a picture of myself as a young child and I started to cry. I can remember her, barely. A confident child, uninhibited, thinking, as most children do, that the world can be whatever she wants it to be, so long as she wants it badly enough. I wonder what that child could have become. I've asked that question before, but today I decided to start writing here. Because writing has always been my way of exorcising my demons, and maybe it's time to start doing that with my own words, not by putting characters in the comforting, understanding arms that sometimes I think represent the support I wish I'd had. I'll keep writing fiction, of course, but I need this too. Because if I can keep one three-year-old from turning into this twenty-one-year-old that I am today, it's worth it.

Of course, I know I could be a lot worse off than I am right now. I'm happy sometimes. I've found things that I never tire of, things I can do for the rest of my life, things I can turn into a life. In some moments, I feel it all fall away. In some ways, I am that little girl again, knowing, just knowing, that the entire world will open up to me if only I want it badly enough. When I direct theater, I feel in complete control, like I can make anything happen just by wishing it. When I dance, I feel that, if I just pushed a little harder, I could leave the floor altogether and fly. When I write, I feel like there are countless worlds there, mine for the taking if I care to reach up and grab them. And in those moments, I am happy.

But in other moments, I know that some parts of that little girl never made it to adulthood. Years of therapy, of correction, of being told I was wrong took those from me, and it's something I can probably never get back.

I knew, from the time I was a young child, that there was something wrong with me, that somehow, I wasn't what I was expected to be. I didn't understand back then why. I just knew that normal was something I was not, and normal was something I was expected to be. I knew when I was five and the flapping hand movements I made, the movements that seemed to help my mind work, were criticized by the people I saw as authorities. I knew when I was eight and everyone around me was told that my "tapping" (what I now know is generally referred to as stimming in the autistic community) was something I did when I was nervous, and I knew it wasn't, at least not completely, but even though I didn't have any obvious verbal delays I didn't have the words to explain that to them. I knew when I was told by counselors at my day program that I was reading too much and that they wanted to limit how much reading I did in a day -- all for my own good, of course. 

I knew when my brother, who was five years younger than me, was praised for doing the exact same things that my mother was frustrated that I did not do -- participate in sports, make lots of friends -- and I knew, even if she never said it, even if she never really knew it as such, that she would be happy if I could just be more like him. I knew it when one therapist constantly corrected me with the word "oops" whenever I started to tap -- as if a natural motion that helped me relax and think was a mistake -- and this was the therapist my parents praised for "helping" me stop tapping. I knew it when my brother tattled on me for tapping, and my mother rebuked both of us, and we got into an argument over something related to it, and she told us "you each did one thing wrong", as if the motions I needed to relax on long car trips on which I often had no privacy or alone time (beyond going to the bathroom or being in the shower) for days on end, an autistic's worst nightmare, which was something no one in my family ever seemed able or willing to comprehend, was somehow a form of misbehavior. I knew when I was in middle school and my mother told me I had to give someone a compliment every day or I wouldn't be allowed to have any sweets or junk food (something that was already regulated well beyond what was normal for a twelve-year-old).

What all of this was meant to do I don't know, but what it didn't do in practice was help me. I started befriending anyone who came around, even the girls who only wanted to be my friends so they could get me to do their work for them, and I couldn't figure out how to back out, because I thought this staying in friendships was what I was supposed to do, and the idea that I Must Have Friends was pushed far more than the concept of healthy friendships was ever explained. I was taken advantage of and I stopped being able to trust anyone but a select few people. I never learned to confront people or stand up for myself; all my lessons were in making sure I didn't appear different than my peers, because that would somehow put an end to everyone being mean to me. (Spoiler: it didn't.) I learned to lie from a young age, not because I was actually doing something that was seriously wrong, but because I was afraid of being anything short of absolutely perfect, and because people always seemed to react badly when I was honest, or I would be punished because I couldn't behave exactly the way I was expected to, which was, to be frank, not NT behavior, which would have been difficult in and of itself, so much as ideal NT behavior. I have broken this habit, but it took me years, and I still find myself feeling like I have to justify even the most insignificant mistake I make to everyone else and beat myself up for it at the same time.

It only got worse when I hit my teen years. I was already susceptible to outside influences and criticism about my body, and why would one expect anything different? My body, and what it did, had been criticized day in and day out for as long as I could remember, and now I was a teenage girl, with all that that entails. My home situation didn't help any -- I was told I was "still beautiful", but this was tempered in beyond comments of "do you really need to eat that?" and "you can't keep gaining this much weight" (nothing my doctor thought was a problem at all) and "you need to exercise more", a process that, it did not escape my notice, was not repeated when my brother hit the same age. Sometimes I seriously wondered if my mother wasn't trying to cause me to develop an eating disorder, it was that bad. Other times I wondered if she would even notice if I did, or if she would just be glad I was finally becoming what she wanted me to be. And I do believe, to this day, that the treatment I received as a child was in large part responsible for my body insecurity. I had learned that I was supposed to become what other people wanted of me, and what she wanted of me was for me to look a certain way and be a certain number on the scale.

Fast-forward to me, twenty-one years old, sitting here on my computer at two in the morning (that, by the way is not unusual in and of itself). I no longer live with my parents, but it doesn't stop the second I get out. I still lack confidence and need to get validation for everything I do. I feel like I have to be perfect. I put on makeup if I'm going to leave my house, even if it's just to go for a run or grab something at the grocery store. I feel guilty if I stop to think of my own needs in a fast-moving situation, even for a moment, because I was always told that that meant I was being selfish and didn't care about anyone else. I stare at myself in the mirror and try to find something positive to say when all I can see is every real or imagined defect. I lack confidence. I always worry about what people are thinking, I can't turn off the part of me that worries about perception, that sees that as the most important thing in my life. I can't feel confident and free.

I was luckier than some to have my father, and before I end this post I want to pay tribute to the one person in my life who seemed to understand, who made some mistakes but took responsibility for them and admitted that what was done to me as a child was wrong and apologized. It won't bring the pieces back, but to know that he knows it was a mistake is hardly meaningless.

I want to close this out with an entreaty to any parent who might be reading this. I look at that picture and cry for that little girl, because unbeknownst to that child it's already too late for her. She's almost two decades out of her time, and because of that, her future is set, she will become me, sitting and crying in front of a computer and trying to make sense of it all. But there are so many of those little girls and boys out there right now, and they aren't just pictures of what might have been. They have a chance I can't go back in time and give myself.

Teach them to stand up to children who make fun of them before you teach them to change their behavior to keep children from making fun of them. Focus on quality, not quantity, of friendships.

Make their personal comfort and bodily autonomy more important than how others perceive them.

Don't expect them to exhibit the same behavior as their NT peers, and especially don't ask them to do things NT children don't even do in real life, based on some ideal model of child development.

Let them be who they are. That may mean giving up some of your ideas of the child you want, but the damage you will do trying to make them into the child you always dreamed you would have is indescribable.

Please remember. Remember me.