Though we’ve known each other for 23 years now, it’s only been 27 months since I came to know your name. I now know that you have been the cause of many highs in my life. You were there when I attained a class rank of 1 out of almost 500 students. You were there when I, a novice, self-taught violin player, made it to the district orchestra and played original Tchaikovsky. You were there when I won the city’s story writing contest, beating out writers nearly twice my age. But, autism, you were also the cause of some of the deepest, darkest times. You are much of the reason that I have lost nearly every friend I’ve ever had. You’re close by when I have lost my words but am filled with emotion and a need to express myself. You’ve caused me to be called so many names… weird, freak, even the r-word that I won’t type. You and I have had a love-hate relationship for as long as we’ve been together.
My feelings about you change from day to day, hour to hour. Sometimes I am grateful for the ways in which you’ve made me a unique individual. Sometimes I like that I see the world through a different set of lenses and have a different perspective on life. I love the way you’ve kept me young at heart when it seems that everyone else has grown up and, in my cases, become twisted or tainted. Goodness knows I’m thankful for the cats! It’s not all flowers and butterflies, though; you’ve hurt me, badly. I hate that people look at me like I’m different. I hate it when people tell me I’m too difficult, too confusing, too weird, too much, too challening. It upsets me when I have so much to say but simply can’t get the words out. I’m resentful of the way you keep me out of public places because they’re simply overwhelming. You’ve kept me from normalcy, that thing that I desire above all else.
I wish that we could live more in harmony with one another. To be honest, I’ve struggled with you for so long, I’m not even sure what that would be like. I could do without the frequent melt downs, thank you, and I would love to fit into the small group at church that I “should” fit into, rather than not fitting into one at all. I wish that people could learn that what I am on my best day and what I am on my worst day is all one person. I wish that I could learn to let myself be… myself… in every situation, rather than forcing what I don’t feel.
Don’t you see how great it would be if things could change, just a little? If I could go out in public to do what I need, and even want, to do? If the melt downs calmed down a little? If all the comorbids simply fell away… or, more realistically, if I could work at them until I beat them? The anxiety, the OCD… all of it, gone. If people were more understanding and accepting? If I could just be me? If I had the words I needed, when I needed them, reliably? If I didn’t have to talk when it literally makes me sick to do it? If we got rid of the hitting, biting, picking, rocking? Life would be better if we weren’t so at odds. I could have freedom, and you could be a success story… how autism helped one girl “make it.”
I know you’re hesitant to change– heck, you’re in part defined by a love of routine. But you know, autism, look at all the good that has come into our lives because of change. We were terrified to move out and come to this apartment, but that has turned out to be fantastic. And going to college (then coming home on breaks, then going back, then graduating)… every single one of those changes was a challenge, but look how much we learned in college and how much better able we are to use our mind for it. And adjusting to partial was certainly hard, but that has been a huge, huge blessing. Change isn’t all bad.
I’m so confident that we’re going to be okay. I truly do need you, or I wouldn’t be who2re for backup. There’s Elsie, who means the world to us and loves us totally unconditionally. There’s L and T and K and C who provide Waiver services, ABA and community inclusion and all that jazz, who are helping us. There’s Jannette and Dana and Dana (yes, both of them, too) who want to see us get better. There are our friends, Leigh and Chloe and Heather, who are here for us no matter what. These people will help us. They won’t give up on us.
So, what do you say, autism? Can we give it a shot? There’s a big world out there waiting for us, and it’s time to find out what it has in store!