An Inconvenient Youth: Raising Children with Autism
McCarthy's controversial autism group, Generation Rescue (also publicized by her boyfriend, Jim Carrey), contends—despite solid evidence to the contrary—that vaccines are primarily to blame for the recent rise in cases of autism. (Last February a special federal court set up by Congress ruled that childhood vaccines do not cause autism.) McCarthy also claims that autism can be "reversed" through various regimens and therapies (many of them non–FDA approved and expensive)—her own 7-year-old son, who was diagnosed with autism in 2005, is now, she says, "recovered." For this group of mothers, who have spent the bulk of their children's lives frantically trying every treatment they could get their hands on, McCarthy's ideas can feel like salt in a wound.
"The fact that you would do all the things Jenny McCarthy wants you to—but the fact that you can't—is the most desperate, hopeless feeling in the entire world," says Heather. "I distinctly remember standing in my front yard. My husband was mad at me because I wanted to try another therapy for Padraic. I said, 'I don't care if I have to live in a cardboard box! I will charge every card that we have and do whatever I have to do for him!' And my husband never fought me again. Now we're in debt up to our ears."
This is another laugh line at the table, because almost everyone relates. (Informal marriage counseling is an added benefit the group provides.)
"We would have to mortgage our house if we wanted to try to live up to what Jenny McCarthy has supposedly done for her child," says Stacey.
"What gets me," Erin adds, "is, what if these treatments don't work? What if you do all of it and you still have autism?"
And that leads to a bigger issue—one that really burns this group: the implication that accepting your child's autism is not okay. This attitude is due in part, they feel, to Generation Rescue's dominating and oversimplifying the conversation in America about autism. The simple fact is that not all autistic kids can "recover." "We need to reexamine what it means to be a successful adult," says Erin. "To me, now, a successful adult is a functional adult. We need to give these kids an opportunity to have a shot at meaningful jobs and secondary education. Maybe they'll be bagging groceries, but they'll be paying taxes. They'll be law-abiding citizens. It's not just about the money we'd save, it's about the contributions these kids will make that will benefit everyone. I strongly believe that the energy crisis is eventually going to be solved by an autistic 10-year-old boy who is perseverating on batteries. He's got that kind of focus."
At this point, however, society still has a long way to go in terms of tolerating people who behave in unfamiliar ways.
"One thing I've been fearful of is standing in line at the airport with your autistic child, and your kid saying, 'Mom! I've got a bomb!' How the hell am I gonna deal with something like that?" asks Margaret.
I tell her my great-grandmother carried a card in her wallet saying I AM A DIABETIC. I HAVE NOT BEEN DRINKING. If Henry had a card, what would it read?