While his friends and even his younger brother were testing the waters of growing up, my little boy memorized the pay scale of various military ranks. He devoured books about the Vietnam War and the history of weapons. He memorized random facts about his favorite soldiers and then repeated them. Over and over and over. When his friends got bored, he found someone else to tell. If that didn’t work, well, he picked up another book.
There were other signs, too. Loud noises made him angry. He turned down a ticket to the circus because he was afraid they might shoot a cannon. He is extremely sensitive to pain but doesn’t realize when he’s hungry or thirsty. And he still has toddler-style tantrums. When he’s upset, it’s impossible to reason with him. I looked at my son’s life as a whole, and the word washed over me. My son has autism.
I knew it was true, because I taught children with autism for many years. Yet for the past year, I’ve held the word against my chest, as close as a secret, telling only my dearest friends and the occasional Internet chat group. We saw one specialist after another and filled out developmental histories and lists of symptoms at each visit. Each time, they said yes, these are signs of autism, and they added his name to their waiting list for specialists and therapists.
Yet I rarely talked about it. His grandparents had no idea, and I never wrote a blog post about it.
The reason for that is simple: I’ve been scared to give this word to you.
I’m not scared to raise my son. The truth is that as a family, we have been struggling and celebrating with him longer than we have had a name for his uniqueness. And I wouldn’t want my precious, quirky little boy to be anyone other than who he is. I’m not scared of the realities of autism, I’m just afraid to tell you about it.
If I let this word out into the world — what are you going to do with it?
If you know, will you talk slower and louder to him? Will you treat him like he’s younger than he is? Will you be scared of him? Worse, will you assume he’s in his own world and stop talking to him altogether? He’s sensitive, and he very much wants to make a friend. It would crush him to be ignored. Can you hear this word and still see him as a person, as a little boy not terribly different than any other little boy?
And if I speak this word, will it be my family’s only identity? We aren’t just the autism family. We’re also Anglican. And we love to travel and hike. We celebrate every holiday with streamers in the kitchen and homemade cake. And we tend to be loud and animated. We’re the family with a lot of little boys, and one little girl, all close in age, filling up the van in the carpool line. Can you still see our personalities, strengths and interests? Or will you see only the word autism?
And does that mean I have to become an autism mom? I really love gluten, and I’m more likely to bring brownies to the Individualized Education Plan meeting at school than a lawyer. I don’t want to be seen as a superhero. I don’t want to be the one who does something others can’t imagine having to do. I’m not special. I’m just a woman raising my kids to the best of my abilities, just like you. I don’t want the identity, the otherness that will happen if I let this word out into the world.
So I had decided, even after he was diagnosed, that I would not tell anyone. We weren’t going to be the autism family, if I had anything to say about it.
But my son needed a name for his uniqueness. He needed to understand why life is harder for him in many ways. He was frustrated and confused and needed a way to talk about his struggles. So I told my son he had autism. I gave him the word he needed. First in a conversation, then in the form of a child’s book called All Cats have Asperger Syndrome, which beautifully and simply describes what life is like for children with high-functioning autism.
All at once, that word was not in my possession any more. It was his to carry and study and share as he saw fit. And for my little boy, who knows nothing of how hard advocates have fought for needed services, and how that fight has shaped the special needs community … for my boy who doesn’t understand the weight and implications of labels in our society, or the danger of so freely sharing who we are with the world … for my little boy, the word autism was a relief.
He carried it around like an oxygen tank. He kept that book in his hand for days. The first night he had his word, he went to each of his siblings and asked them if they would read his book with him. I watched my kids gather around and laugh together. “Yes! You do that!” they exclaimed over some pages. At others, they stopped and looked at him. “Is that true? Is that really hard for you?” My son nodded emphatically.
The same night, he asked me to call all of our family, the ones I’d been intentionally not telling for the past year, and share the word with them. Because the word autism helps him make sense of his world. He feels a little less weird, a little more accepted. It gives him a way to connect with his community, which he desperately wants to do, even if he doesn’t know how.
I fear this word, but he welcomes it. He needs a way to say, “This is why I’m different,” and also, “Here is how I’m gifted.” He does not see the diagnosis as a disability. In fact, he says he’s enabled by his unique strengths, and I agree with him. He needs the word, and he needs to share it with you.
So here we go, world. I’m opening my hands and sharing one of the most important facts about my family with you. For my son’s sake, I will trust you with our word. I hope when you meet my son, you will see a kid who loves military history — but also swimming, Harry Potter and his family. He’s nestled inside an Anglican family who travels and hikes and celebrates every holiday with streamers and homemade cake. A big family with lots of brothers and one little sister piling into the van at carpool. And one of those brothers happens to have autism.
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