An Inconvenient Youth: Raising Children with Autism
Margaret exclaims, "'I'm not inappropriate. I'm just autistic.'"
The table erupts in wild cackling.
"You really need a good sense of humor," says Margaret, wiping tears away. "This support group is lifesaving. There's just no other word for it. We laugh a lot. It helps us, doesn't it?"
"It saves me," says Heather.
"It saves me," says Erin.
As the evening winds down and everyone starts thinking about leaving, Erin takes a moment to tell a story from their larger online community. A mother of a toddler recently contacted her after receiving an ASD diagnosis, and asked Erin, "If you had to start your path over, what would you do differently?" Erin tells the group, "I wrote her back and said, 'I'd have done less. I would have enjoyed my child more.'
"I'm proud of Thomas," she continues. "I love him, and I love the autism in him. I'm going to help him be the most functional adult that I can, but I love him exactly the way he is. Every family needs to hear that it's not an easy road, but their child, despite the diagnosis, is worth every ounce of their investment because triumph really is possible."
The table discusses various newspaper stories that inspire them—an autistic girl goes to college, an autistic man gets married. With enough care and investment, autistic people may go on to lead normal—and in some cases even extraordinary—lives. But Erin continues: "I worry about a world in which 'cures' can be obtained by some and not others. We need to convey that it's okay to have autism—to the 10-year-old boy who obsessively talks about model trains, to the 16-year-old boy who worries that he's different, or to the 25-year-old woman who can't form relationships—we need to show them: You're one of us. It's okay. We accept you."
A few weeks after the dinner, I get an e-mail Stacey has sent to the group: Her twin girls—2-year-old Julie and Megan—have received a diagnosis on the autism spectrum, though not as severe as Katelyn's. (Parents of a child with an ASD have a 2 to 8 percent chance of a second child's also being affected.) "It's a knife in my heart," she writes. "I am scared to death for my daughters' futures, and whether I'll have the resources and ability to help them." But by the time I talk to her on the phone, the other mothers have already come to her aid, especially Heather, who is providing occupational therapy for all three of the girls through her employer. "The emotional support from the group, at least, is a silver lining," Stacey tells me. "These friendships are remarkable."
Erin, too, tells me she's suffered another blow. Thomas's doctor has determined that the seizure disorder will either remain as it is or eventually get worse. "But the same day, as Thomas and I were sitting in the neurology waiting room," she says, "his best friend called. I could hear him shouting, 'Dude, we made it! Our band got into the school variety show!'"
A couple of weeks later, Thomas and his band performed "Enter Sandman," by Metallica, on their school stage. I saw the video, and there he was: a very handsome, slightly aloof little rhythm guitar player in a black T-shirt, occasionally flashing a dazzling, blushing smile into the roaring crowd. As I said, I'm biased, but Thomas rocks.
Cintra Wilson writes regularly for The New York Times and is the author of three books, including Caligula for President: Better American Living Through Tyranny (Bloomsbury USA).