I once received an e-mail from a woman, a reader of my blog, wanting to know what sort of advice I could give to her nine-year-old daughter recently diagnosed with Asperger’s Syndrome. She gave me a very thoughtful suggestion, which was to write a blog entry in the form of a letter to my younger self, which could then also serve as advice for current parents of children with autism and Asperger’s Syndrome.
I was not diagnosed until age 10, but I remember very clearly the loneliness, confusion, and frustration that came to define my life at that time. I remember how I had no one to turn to back then, no one who could tell me that everything was going to be okay. A simple truth of pre-teenhood and adolescence is that we never believe adults or anyone who tells us that everything is going to be all right. This is not due of a lack of trust or innate cynicism – after all, it takes at least a few years to build up to that – but because when we are going through all of this, it’s just impossible to think that anyone could understand.
Now, as a young woman in my 20s, I am someone who does understand. I know that I can’t save that girl, the younger me of long ago, but there are many things I would want to say to myself if I had the chance. By doing that, perhaps I can help a girl not unlike my younger self; a girl who, right now, feels she has no one to turn to and feels very alone in the world. It is for this reason – for that girl, her parents, peers, educators and clinicians who can all use a better understanding of what it’s really like inside, that I have written a Letter to My Younger Self.
I know you’re feeling pretty bad right now. The other kids make fun of you a lot, and you don’t know why. You’re trying really hard to be friends with them – doing all of the things you think they want you to do, and it’s just not working. But there is one thing you should know: It’s not your fault. Other people might say that, and you won’t be able to listen to them; but I am hoping that you will if it’s coming from me. It’s not your fault. Say it over and over in your head when you feel the worst, because that’s when you’ll need it most.
It’s not your fault. How can it not be your fault? you’ll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be normal. Why can’t you? That’s just one of the many questions I know you have, questions you don’t know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre’s classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it’s because you enjoy the smell when they’re freshly-sharpened – it calms you down. So don’t feel bad if the other kids snicker or laugh when you smell your pencil. They just don’t understand.
You care a lot about what the other kids think of you. I know you hate going to Pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won’t be okay with wearing them again until you’re much older. It’ll be like that with a lot of things people say to you in school – their exact words will fade from memory, but the effects they have on you will last a long time. But don’t worry – one day you’re going to make friends with someone who really loves your feet and will call your little toe, the one that didn’t grow in right, your “Lucky Toe.”
That’s something you feel like you could use a lot of right now – luck. You keep hoping things will get better, but they never do. I have some good news, though; you won’t lose that hope. No matter what happens, you’ll still be optimistic – foolishly, maybe, but when you’re older, people will tell you how wonderful it is that you are that way.
But I have to be honest with you: things are going to get a lot worse before they get better. You’ll be in junior high school soon, and you don’t know it, but seventh and eighth grades will be two of the worst years of your life. Once again: it’s not your fault.
You like to look at things outside the window – the trees and blue sky make you feel calm. One day you will be in study hall, and you’ll go right up to the window and stick your head out of it. That’s when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you’ll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you’ll keep your head down and take it, because no one’s going to tell you anything different.
But I will. You’re not less, Amy. You’re more. More because you have to work twice as hard as everyone else to make your voice heard. You don’t know how to fight right now, except for when you lash out after not being able to handle the pain anymore, and then it’s you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don’t. Even as an adult, you won’t quite fully master the art of subtlety, but right now, you’re bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their jollies from your reactions. You can’t understand what they’re doing, and you just play straight into their hands, every time. Once more: It’s not your fault.
These days, your classmates call you names – ugly, freak, psycho, loser. Retard. They call you these things because they don’t know you, don’t care to and/or don’t want to. You’re trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won’t have to fight for their friendship – they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don’t realize it. You just have to learn how to love yourself.
There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you, just in case you were wondering how that happened). I have three words of advice for you: Keep doing it. Right now, you write because it’s an escape from the world around you, and you don’t care about being “good” at it. You’ll get a bit of a competitive streak in eighth grade – when you’ll come in second place in the Charles Dickens poetry contest, and will be angry at yourself for not winning – but writing will become an important part of your life after that. In fact, one day you won’t just be writing for yourself – you’ll be writing to help other people. And your writing will help people, even when you don’t realize it. So you’ve got to keep at it.
It’s hard to think that you’re good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don’t listen to them. I know it’s difficult, and their words will go right into you, but they aren’t worth it. You are a good person, a person worth having around, and you’d make so many people sad if you were gone.
The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you’re going to make a difference in the future. Someday, people will want to hear what you have to say, and you won’t believe it, at first. But it will be meaningful, and wonderful. You’re going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.
My time with you is now growing short, young Amy. I hope that some of the things I’ve said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. A lot of people will say that to you, and you’ll think that they’re crazy or just trying to make you feel better, but it’s really, honestly, true. You’re an incredibly special, talented girl, and right now you’re toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you’ll think is, “Where were you people when I was younger?”
The future seems far away, almost impossible to think about, but don’t be afraid to think about it. You’re not even sure if you’re going to have one, but you will. You will. And I will say to you now three words that you don’t hear very often (even when your mother says them to you). Three words that you’ll be desperate to hear when you get older, especially from an aesthetically gifted member of the opposite sex, but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, spastic, uniquely wonderful self. And I’ll be here waiting for you. See you in fifteen years!
Love and Many, Many Hugs,
Your 26-year-old Self
This “In Their Own Words” essay is written by Amy Gravino of Montclair, N.J. Amy is a certified college coach for individuals with Asperger’s Syndrome, and is also diagnosed as having ASD. She is a member of the Self-Advocate Advisory Board for the Daniel Jordan Fiddle Foundation. Amy is currently working to complete her Masters degree in Applied Behavior Analysis at Caldwell College, where she is doing her thesis study on teaching adults with Asperger’s Syndrome to ask someone out on a date. Amy has been speaking at autism conferences across the country since age 14, as well as at professional development workshops, support group meetings, and school assemblies. She is presently authoring, “The Naughty Autie,” a dating and sexuality book for young adults and adults on the autism spectrum. Articles Amy has written have appeared in numerous publications, including Autism Spectrum Quarterly, the Autism Asperger Publishing Company newsletter, the Daniel Jordan Fiddle Foundation annual newsletter, and more. She was also an interview subject in the documentaries “Normal People Scare Me” and “ARTS,” and will be featured in the upcoming documentary, “Desire.” Amy is currently offering private services as an Asperger’s Syndrome college coach and hopes to work on a college or university campus helping students with AS to thrive and succeed both academically and socially in a higher education setting. In addition to her advocacy work, writing, and public speaking, Amy is an avid cooking enthusiast and self-proclaimed gourmand.
If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.