“Do you want me to come in with you while you get your haircut?”
“No,” replied my 24-year-old son Matthew. “I want the barber to think I drove here by myself.”
When I suggest that he remove the junior sheriff sticker from his t-shirt before he goes in, he refuses.
“I want him to think I take care of bad guys.”
Matthew is autistic, and wants to be a regular guy in the worst way. But his efforts are hampered by social awkwardness that, try as we have, we can’t train out of him. Earlier in the day, we had been to the dentist, where Matthew read The Care Bears Go to the Dentist while waiting for his turn. To look at his face, you would think he was reading Paradise Lost. I sat next to him with a straight face while people in the packed waiting room stifled laughter. Most of them have seen Matthew around town and wondered about him. They have seen him at the skateboard store, pretending he works there, and at the hardware store with his large hands wrapped around a bottle of weed killer, studying the label earnestly. They have seen him pushing a gas-powered lawnmower around town with a weed whacker and a leaf blower stacked on top, grinning widely, and they have seen me driving around anxiously looking for him when he wandered away.
What is with that guy?
The dentist was running late, and Matthew started rocking irritably. Just then a young woman looked up from her magazine and smiled.
“Matthew? Hi! It’s me, Marissa. We went to Middle School together. I hate waiting, too. Let me see your book…”
I caught her eye and mouthed the words “Thank you,” and she winked back. It was a perfect moment and I will never forget it.
I learned later that Marissa and some friends from work were on an “Autism Speaks” walk team.
I could not have imagined such kindness when Matthew was first diagnosed with autism years ago. Our family was devastated, and we had no idea what to do. Little was known about autism, and the only resource I could find was the encyclopedia, which painted a grim picture of my beautiful first born son’s future. My husband and I searched tirelessly and futilely for treatments that would cure our son “in time for kindergarten”. In the years that followed, I smiled bravely thorough Matthew’s public tantrums, therapy appointments and teachers meetings. I even had a closet full of gifts to give neighbors and teachers who complained about Matthew’s impulsive, aggressive and injurious behavior. “If he were MY child,” they would say, shaking their heads. The first time Matthew’s younger brother Andy caught me crying after one of these episodes, he looked up at me, his brows furrowed with worry.
“Are you OK, Mommy? Do you want a sip of my apple juice?”
He was just three years old, and I worried about how having a brother with autism would affect him. By the time Andy was 5, I saw his playmates at the park teasing him about his brother’s hand flapping, and I flew to his side to defend him.
“He has a brain problem,” Andy was explaining to them cheerfully, “He can’t help it.”
The boys nodded anxiously and backed away.
“Andy,” I said with a lump in my throat, “I’m so proud of you. That was very loyal.”
“Thank you,” he said, “I’m proud of you, too.”
It wasn’t long, though, until the novelty of educating his peers wore off.
“Autism is so hard to explain,” he sighed, “and I feel like I’m the only one in the whole school who knows anything about it. When I tell kids that it has to do with the Matthew’s brain works, they just call him a retard.”
My youngest son, John, son years Matthew’s junior, was teased about his big brother’s peculiarities as well.
“It’s not easy for Matthew,” I once overheard him telling some friends, “so give him a break.”
Matthew’s adolescent years were especially hard, and Andy John prided themselves for being able to calm Matthew down when he was upset, and making him laugh through his frustrations.
“We’ve got him,” they would say when Matthew climbed off the yellow school bus in tears. The three would go out to the mulberry tree in the back and sit on opposite branches until they got Matthew to smile. Afterward, each would flash me a victorious smile, and I’d put my hand over my heart in reply.
President Obama, I owe tremendous gratitude to Autism Speaks for their research into the science of autism. I’m grateful for their comprehensive resource guide that has helped families like mine get the help they need.
But MOST of all, I am grateful to Autism Speaks for increasing autism awareness dramatically, giving Matthew the opportunity to be a part of our community, of which he is an important and cherished part.
Still, so much more needs to be done. Matthew is an adult now, and wants to work, but few understand his needs and challenges. Few are trained to give him the give him the guidance that he needs in the workplace. And, Mr. President, Matthew is lonely. Just last week, someone called him a “weirdo”.. “I’m not a weirdo,” he said “I’m just a regular guy like my brothers!”
Light it up for Matthew’s younger brothers Andy and John, whose love, patience and good humor towards their autistic brother has been a shining example to their peers.
Light it up for our community. They have learned to love and accept Matthew, quirks and all, are learning to understand and tolerate the differences in others.
Light it up for those who still don’t understand, but would be so much kinder if they did.
But most of all, light it up for Matthew. He wants so desperately to be a regular guy. And I admire him for trying.