Why I Can’t Hate Autism


Dear Autism,

Although we were formally introduced only three years ago, I have lived with you for seven years. We are intimately involved every day, but I hardly know you. I’m still trying to process how I feel about you.

I don’t appreciate your mysterious nature or the havoc you wreak, and I am dismayed that you are a larger obstacle for my son than we originally thought, but I can’t hate you.

I can’t hate you because you and Conlan are so inextricably entwined that I don’t know exactly where one ends and the other begins. I can’t wish you away because Conlan wouldn’t be Conlan without you.

You influence every aspect of his life — how he learns, how he communicates, how he sees the world, how he moves. I see your signature in his play, his expressions of joy, his focused and obsessive interests, and even his sense of humor.

I am angry at you, Autism, because you play hide and seek with my son. You hide him behind impenetrable barriers and force me to seek, seek and seek. I cherish the occasions when you step aside for a moment and let us experience an authentic and meaningful interaction with Conlan — a moment or two without scripting or perseverating, a moment where he spontaneously connects to the conversation or situation we are actually in instead of the one occurring in his world.

I’m amazed when you allow us to peek inside the world you share with Conlan. A few months ago as we walked into a hotel room, Conlan stopped in the middle of the room, transfixed by the window. “Oh, look, it’s so beautiful!” he exclaimed in awe. I looked at the window and saw that yes, it really was. The gauzy curtains sinuously danced in the air blown from the cooler below while the spotlights outside on the roof illuminated them with a magical glow. I never would’ve noticed, but he saw something special, and he was able to share it with us.

I wanted to freeze time, so we could enjoy that moment for a little longer. But then he discovered that same window offered an unobstructed view of the cars speeding by on the interstate below, and he retreated back into your arms. You closed the door on me and held his hand as he jumped and flapped as the cars whizzed by.

Your very nature is a challenge. You are an invisible disability, so people judge Conlan’s behavior harshly and unfairly. You aren’t a disease. You can’t be cured or treated — and you won’t eventually kill him — so you are a chapter in our lives that never ends. Over time our friends and coworkers — and sometimes even family members — become less supportive and accepting of our needs and constraints as you continue to command our time and dictate our activities.

My family, Conlan included, has sacrificed so much to accommodate you — money, time, energy, plans, dreams, tears. My career is the latest casualty in this adventure, and while that makes me sad and even a little resentful, my only real comfort is that Conlan is worth it.

Conlan

I accept that you are a part of my son, and I respect your eccentricities and conditions. But I am angry at you for selfishly keeping him locked away so much of the time. I’m angry that you are interfering with his education and functional development.

Can’t you work with Conlan instead of against him? After accepting you as part of his life with such grace, he deserves better from you.

I acknowledge that you are responsible for his unique way of seeing things and you are the reason he has developed a remarkable work ethic. You encourage his passions and give him the focus to memorize information he wants to keep. But you also withhold his language skills, confuse his sensory system, and obstruct basic functional capabilities like zipping a coat, handwriting and using utensils.

Can we make a deal? Just let go enough for him to function in the real world. If you would stop holding his words hostage and untie his motor skills, I’ll get on board with the obsessions and start stimming right along with him. With the right motivation I can jump and flap with the best of them. I’ll memorize all the Cars and Planes movies so we can run the scripts together. I’ll learn to speak Minion so we beep and bop back and forth. I’ll even paint his bedroom to be an undersea whale paradise.

I always tell Conlan I love him while I’m tucking him into bed at night. And I always hope he will tell me he loves me too. If he responds at all, he usually says, “Yeah,” while he watches his fingers flutter like a dragonfly at the corner of his eye. One random night when I said “I love you Conlan,” the dragonfly stilled and Conlan looked me in the eye, put his hand to my cheek, and said, “I love you, too, Mom.”

For more of those moments, Autism, I will do just about anything. I know I have to share him with you, but you also have to share him with us — more than you have been. If we work together, we can give our boy a fulfilling, productive, happy life.

And if you can’t get on board with that, know this: I’ll never stop fighting for a better custody arrangement.

 For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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