One of our favorite books of the spring is "Next Stop," by Glen Finland, a remarkable and moving story of her son, David, a differently-abled young man seeking to build an independent life.
Charlie Rogers: Your son has received a variety of diagnoses, including autism and Tourette's. How do you describe his condition?
Glen Finland: My son was diagnosed with autism and then two years later, when he was seven, diagnosed with Tourette's. And it's a mean combination.
I usually use the phrase "differently-abled." The language around autism is evolving. I've noticed that now there is a kind of "people first" language -- where a young man happens to have autism, instead of using "autistic" as a descriptive adjective.
But I have a different take on that altogether. I don't think "autistic" is the latest model of the "R word." I don't think "autistic" is used to diminish people's intellectual abilities. I think it is a kind of diagnostic catchall. If we embrace the word -- bust it wide open and use it as a learning tool -- it would encourage people to start paying attention to the wide and rich variety of faces within the spectrum.
Charlie Rogers: Speaking of the "R word," sometimes how people use language can be upsetting. In the book, there is one scene where, in an emergency, you're forced to call your son "retarded" because a subway security guard doesn't understand what "autistic" means.
Glen Finland: Yes, that's a word that breaks the heart. I had to use that word because in the amount of time that it takes a young adult to disappear, you can't explain the buckshot of autism to a total stranger. Right then, all I cared about was getting my son back. It was a miserable moment for me.
This was not an easy book to write. We pulled a lot of scabs off of old family stories in order to do this, but I think the book is better for it. Life is messy. The result is no fairytale. It's me looking you in the eye and saying, "this is what really happened."
Charlie Rogers: What about David's opinion?
Yes, his is the voice that is missing here. And that was a daunting task, to be an honest steward of someone else's story, especially when I can't say I know for certain what David is thinking, or ever really thinks. And he's entitled to a private life of his own, just like you and me. So it's risky.
My book is really trying to understand how my son sees the world. I wanted to be able to let the story tell itself without being didactic or boring. And I really wanted to show how very nuanced the real lives of autistic young adults are.
Charlie Rogers: The book is about the whole family, not just you and David. How did you capture the feelings of your husband and other sons?
Glen Finland: I'm living with four boys, you know, my husband and three sons. They don't cut me any slack.
First, I asked their permission to write the book and I did tape-recorded interviews with each one of them. I taped the conversations with my older sons to get down what it really felt like to be a living, breathing, sweating, testosterone-fueled teenage boy who is also conflicted by the emotions of love and duty, and responsibility, and embarrassment of having a differently-abled sibling.
My oldest son was very skeptical and said, "Cool," like he was issuing me a challenge. My middle son is David's protector in the family and he said, "On one condition, that you don't embarrass him and that you don't make his life any harder than it already is."
And my husband had a very insightful directive; he said he would agree as long as I highlighted David's physical strengths -- he's a runner -- in equal parts to his cognitive disabilities.
Charlie Rogers: Was that the motive for using modes of travel thematically?
Glen Finland: Yes. That opened up running as this wonderful metaphor for moving the story forward. You need a clothesline to hang all these stories on. And I was able to use David's running, and teaching him to ride the subway, as a metaphor for moving forward toward his independent adulthood. And I have to credit Amy Einhorn, my editor, for coming up with the "Metro" idea. She said that this was the right motif.
Charlie Rogers: Having a big family and a special needs child must be very time-consuming. How do you find time to write?
Glen Finland: You have to make the time. Sometimes I've gone to a friend's home to spend time with myself. I have to have quiet to write. At home, I go into a (mental) cave when I write. Many times I have been typing away and suddenly I'm aware that David is just tapping, tapping, tapping on my shoulder. We work well that way together.
Charlie Rogers: What other challenges did you have in writing the book?
I have no place in this story for pity. There are some sad moments in the book, but I think there's a lot of humor -- and I see a lot of humor in my own son's way of thinking. He's a quirky fellow. I'm hoping I can make the reader come away from the book caring about him.
Part of the problem all along is that there is no roadmap. Frankly, like every parent, we're just out here winging it every day. I'm not a doctor. I'm just a mother and I can tell you some stories. So here they are, before I forget them.
Glen Finland's "Next Stop" Book Shelf
These are some of the books that Glen recommends:
- "The Story of Beautiful Girl" by Rachel Simon
- "A Regular Guy: Growing Up with Autism" by Laura Shumaker, Terri Hinte, and Linda Kalin
- "The Liars' Club: A Memoir" by Mary Karr
- "Overcoming Autism" by Claire LaZebnik and Lynn Kern