Autism: A Mother Reacts to McCain's Pledge of Help

Autism, once unknown to most Americans, is now a media sensation, attracting the attention of celebrities and politicians alike. Last week, GOP presidential candidate Sen. John McCain shined a national spotlight on the brain-development disorder while answering a question about his running mate, Gov. Sarah Palin, during the final presidential debate. Palin, whose son, Trig, has Down syndrome, "understands special-needs families," said McCain. "She understands that autism is on the rise, that we've got to find out what's causing it, and we've got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children. She understands that better than almost any American that I know."

But McCain's comments and his Palin pick have not been viewed positively by everyone in the autism community. His discussion of autism has even backfired among some parents who believe he is pandering for their vote. NEWSWEEK's Claudia Kalb talked to Kristina Chew, an assistant professor of classics at Saint Peter's College in Jersey City, N.J. Chew writes a blog called AutsimVox. Her son, Charlie, 11, has autism. Excerpts:

What did you think of Senator McCain's debate comments?
Kristina Chew: Very puzzling. It seemed that he was conflating autism and Down syndrome. Certainly, parents of kids with autism and Down syndrome have tons of overlap in our concerns, but they're very different conditions. I found that troubling. And the comments he made about autism, they seem to betray a lack of knowledge or understanding about the kinds of things that autistic children need. It almost seemed to be a rhetorical statement. To be really cynical, it's as if he's playing a sympathy card. He's sentimentalizing the children, but not looking at how we can help them, how we can teach them, how we can make things better.

But Palin does have a special-needs child.
His statement that Sarah Palin understands the challenges better than anyone else, I thought that was very unfortunate for him to say. It's just incredibly presumptive. I don't think we really have a sense yet of how Palin understands special-needs children.

Why not?
I think every parent of a special-needs child, we all want to feel that we're experts, that we all do know better about our child. But I think in reality often we don't. What I knew about autism when Charlie was an infant, a toddler, is nothing like what I know about it now. We're all looking for answers, for solutions, for better therapies and schools for our children.

What do you need? And would Senator McCain's plan to institute an across-the-board spending freeze affect the autism community?
Every family with special-needs children feels like they need more support and services. They need another aide in their child's classroom, they need more therapy for early intervention, they need sick care, after-school care. I know my own son costs our school district a great deal more than a typical child. Any kind of spending freeze is either going to cancel out the creation of new services or make it harder for a school district to keep on providing the things it has been providing.

Aren't many parents thrilled to see the subject of autism raised on the national stage?
Some parents are just excited to see their child's disability mentioned. And I agree with that. It's very important to me to hear autism being discussed on a national level, to know people are thinking about it. But I'm always concerned about the way autism is talked about, because when politicians and celebrities talk about autism, it affects what people think. The statements that have been made about special-needs children put a huge emphasis on children. There's been very little said about adults with disabilities. As a parent, that concerns me most of all.

Isn't Sarah Palin a good role model for special-needs families across the country?
I appreciate the fact that the choice of Palin brought working mothers, and especially working mothers of special-needs children, into the national discussion. And as a mother, I hesitate to criticize or judge another mother on her parenting style. But I'm concerned about the reality [she would face in] taking care of a special-needs child.

How is your son doing?
It's not as easy when a child gets older. My son is growing up. My son is an adolescent. He has tremendous language disability, so he can't tell us about the changes going on inside of him. It's very frustrating for him and for us. He can have a loose tooth and it can be driving him crazy and he can have an outburst because of that. It'll look like he's getting mad out of the blue, but it's because he has a loose tooth and it hurts.

My son doesn't have other friends or kids he plays with his age so we spend a lot of time with him. He definitely needs constant care. He can't get off the bus and let himself in the house. He's only 11 years old, but he's a strong athletic boy and taller than me. When we're out in public, people look at him differently immediately. It's very painful to see people shrink away from your child, look scared or horrified or laugh.

What do you want people to know about your life as Charlie's mother?
I never thought I would be the mother of a very disabled child who would need constant attention and who would not go to college, who would need special education, who would not be able to sit down and read a book with me, who would just be very different. I also didn't think I'd be the mother of a child who'd jump into the ocean at high tide and swim or the mother of a child who would be able to ride a bike for longer than me and enjoy it. Everything about raising my son has been unexpected, but it's all been completely worth it. Life is very challenging, life is very busy, very full, and sometimes very frustrating. My son is a great, great kid. My husband and I wouldn't want him to be any different than he is.