03/27/2006 AT 09:00 AM EST
Daniel Isn't Talking,
Marti Leimbach's new novel, tells the story of an autistic boy and the mother who refuses to give up on him. Leimbach, an American living in England with her British husband, has an autistic son herself and drew much of her book from personal experience. An exclusive interview follows.
How closely does the book mirror your life?
I have a daughter, Imogen, and my son Nicholas, who's 9 and is autistic. I set out to express all the emotional content of my life as a parent of a child with autism. But the sexy stuff in the book? The Irish lover and all that? Forget it! Entirely fiction.
When did you first suspect that Nicholas wasn't like other boys?
He started developing symptoms between 20 months and 3 years. He didn't respond to his name – at first I thought he was deaf. He didn't look for me when I left or entered a room. He didn't develop his play repertoire; he only liked a particular toy, Thomas the Tank Engine, and even with that all he did was hold it close to his face. Then he started to walk on his toes and flap his hands, and loud hand dryers in public bathrooms would freak him out.
I used to get comfort from the fact that he didn't exhibit every problem associated with autism – he loved being touched, for instance, so I thought he couldn't be autistic if he loved cuddles. Later I learned most autistic kids don't show every behavior.
When was he diagnosed?
He was 3 years and 2 months. For about a year beforehand all the doctors had said, "He's fine." I kept bringing him back because I knew something was wrong, and then one day this doctor told me she thought there was nothing wrong with my son – the problem was me,
that I was unnecessarily anxious all the time. I thought I was the worst parent in the world.
How severe is his autism?
He was diagnosed with a moderate case. That means you're thinking about a special school and respite care. But I couldn't believe a 3-year-old's fate was sealed.
What did you do?
I was devastated, of course, and terrifically frightened, but even in my tearful and hysterical state, I could still pick up a phone. I called parents all over the world who said, "Try every avenue. Don't sit and wait." We ended up doing a therapy called verbal behavior. The idea was that every waking hour he would be interacting with someone. So we got trained in how to help him communicate and play, then hired others who we also had trained. We were privileged – not everyone has money to do this.
The husband in the book wants to put his son in a special school and be done with it. How did your husband react?
For a time Alastair just seemed to freeze, hoping it would all go away. I guess he didn't want to get his hopes up; he was trying to be a little self-preserving. I was completely devoted to helping Nicholas. I remember him asking at one point, "Do you care about our marriage?" And I said, "Not right now." But it's not easy living with a woman who's hysterical because her child is slipping away.
How is Nicholas doing today?
He's going to a regular school, he has friends, full language. He was in the school play, which he loved. Most people would have a hard time picking him out as autistic. I guess right now you'd say he was a very high-functioning autistic person – he presents with unusual habits, but he's still only 9, and we're not done.
What are his unusual habits?
If you came to my house right now, Nicholas would tell you about every type of guitar there is, show you his guitar and then play you a concert – "Smoke on the Water" is his best song. And you really wouldn't have much choice in the matter.
Do you think he could ever be cured?
He says he wants to get married and have children when he grows up. That means he is going to have to be pretty capable. According to a 2002 study, only 10 percent of autistic kids grow up to have a job, and only 3 percent live independently. But they didn't get what my kid's getting! The point in all that we are doing for him now is to make it so he can one day navigate the world on his own and I can die in peace. But I'm not making funeral arrangements just yet.
What advice do you have for other parents with autistic kids?
I think whatever choice you make for your child, just remember that you, yourself, are his or her most important resource. Years ago it was the parents of autistic children who encouraged me, who helped me to believe in my son. I would want to encourage others. What I have seen in my son and in many other children is nothing short of miraculous.
For more information and autism resources, visit Leimbach's Web site, www.martileimbach.com