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.
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