Interview: Overcoming Autism with Claire LaZebnik

A completely revised new edition of the indispensable book Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life comes out tomorrow. The original, published ten years ago, was written by Dr. Lynn Koegel, the nationally recognized head of the Autism Research Center at the University of California, and Claire LaZebnik, a professional writer and the mother of a son with autism. The combined perspectives of the expert and the mother give this book both authority and emotional heft. It is wise, hopeful, generous, and compassionate. I am very grateful to Ms. LaZebnik for answering my questions.

The word “overcoming” in your title is a bold one.  How did you choose it?

Well, as Dr. Koegel and I often say, the title is shorthand for “Overcoming the symptoms of autism that make life more difficult” — but that’s not as catchy. Our goal isn’t to get rid of autism; it’s to help alleviate any of its symptoms that make life more difficult for the child and to teach the child to reach his or her full potential. People with autism have many strengths. We don’t want to get rid of those; we just want to use them in a positive and productive way.

This is an update of a book originally published ten years ago.  What have been the biggest changes in the understanding and treatment of autism since that time?  In public understanding of autism?

People are far and away more aware of autism now than they were back then. It’s rare to meet someone today who doesn’t have a family member or friend who’s on the spectrum. As a result, people are more informed (sometimes, sadly, more MISinformed) and more aware that you can have autism and be a vital, involved, and valuable member of your community—back when we were first writing, it was seen as something more debilitating and alienating. All of that is positive, and we’ve tried to incorporate the changing attitudes in our revision. We also call on the community to be more accepting of those who don’t fit into a narrow definition of “normalcy:” different viewpoints and experiences enrich our collective knowledge.

Interestingly, many of the behavioral interventions we described in our first edition still work. We’ve added some newer ones; we have more research on specific interventions and we’ve learned even more about which behaviors to target to bring about the greatest progress. But the interventions described in our first edition continue to work, and we’re happy to say that the last decade of research validates everything that was in our original book.

Both parents and children with autism can feel isolated, and it can be particularly devastating when parents grieve separately rather than together.  What can we do to make schoolmates and communities be more effective in providing support?

As I said above, we have to make our communities aware that differences enrich us all. We need to learn to smile at people who are struggling with a tantruming child and to offer our support if a family wants to include a child with any kind of difference in a community or school activity. I do think honesty and outspokenness help: for instance, families will sometimes go in to speak to a classroom to explain the ways in which the other students can support their child and that’s almost always of huge benefit to everyone in the classroom. Of course, acceptance has to come from the top: if a principal or a community leader acts like a child with special needs is a burden, others will take the lead from him or her. It’s important for inclusion to be practiced from the top down.

Isn’t it spoiling a child to give rewards like candy?

All good parenting boils down to reinforcing the behaviors you want to see and ignoring/discouraging the ones you don’t want to see. I don’t think it’s spoiling to give a child a piece of candy if he’s worked hard to get it—and “working hard” for a child with autism can sometimes mean making a vocalization to ask for it rather than simply screaming. If you give a child a candy to calm him down when he’s been misbehaving, you ARE  spoiling him—you’re teaching him that bad behaviors get good rewards. But if you give that same child a piece of candy because he’s sat quietly and listened for an agreed-upon amount of time, you’re doing the opposite of spoiling him: you’re inspiring him to keep up the good work and letting him know you’re proud of him. That’s how he’ll learn and grow  Often, that piece of candy or a promised fun outing will be the only thing that motivates a child with autism, whose social difficulties may keep him from finding praise as rewarding as typical children do.

Parents are used to measuring their children against other children and established developmental milestones.  But you urge parents not to compare their children to other children with autism.  Why is that?

It’s important to stay upbeat and proud of your child’s accomplishments: comparing him to typical children of the same age may feel frustrating, and that’s not helpful to either of you. However, understanding what other children are doing at certain ages can be helpful in developing goals for your child.

You have a “golden rule” — treat your child as you would if he did not have a disability.  Why is that so important?

Because it forces you to stay on the right track. If you constantly make excuses for your child and let him get away with behaving in ways you’d never let your other children behave, you’re not guiding him properly and you’re probably damaging his relationships with other people. You don’t want to compromise your expectations for your child simply because it feels like work to make sure she doesn’t hit other people or has to ask nicely for a snack. All kids need rules and clear guidelines.

One striking theme throughout the book is the focus on the child’s strengths as a starting point.  What are some of the strengths you see in children with autism and can you give an example of one that can be built on?

Most children with ASD have strong visual skills. Some are very good readers at an early age (my son was). A good teacher might ask the child to read out loud to the other students: it’s a nice way for them to connect and can lead to some real admiration from the other kids. Children with autism often know a lot about a very specific subject, like trains or presidents or (in one case I saw) fruit bats. If an aide or teacher or parent can structure a game around that interest, the child with autism will be the most sought after team member in the group, which builds pride and respect.

What do you mean by “prompting and fading?”  Isn’t that good advice for all parents?

We all do it already! Think about how we teach kids to say “thank you.” First we say it for them, when they’re too little to talk. Then, when they start speaking, we prompt them to say it every time someone does something for them or hands them something. Then we “fade” back, and wait for them to say it on their own at appropriate times. If they don’t remember to say it, we quietly remind them. Eventually, over time, children learn to say “thank you” without any prompting at all, and we can fade our prompts entirely. Kids with autism may need more prompting at the beginning than other kids—for instance, they may need to be prompted to greet a friend or share a treat or ask a question in class at an age when other kids are already doing all of that on their own–but the process is exactly the same.

Children with autism miss social cues that seem to come naturally to neurotypical kids, and that sometimes causes people to conclude that they do not care what their peers think about them.  Claire, your story about telling Andrew that his puppet hands stimulation looked strange to other children shows that is not the case.  Are children with autism usually receptive to being told how they are perceived and what they can do to fit in?  And what about the issue you identified that teaching them to respond to peer pressure can backfire when they become teenagers?

I think it does depend on the child. Andrew happened to be very motivated to fit in with his peers: he wanted to make friends and so he responded to any advice we gave him toward that end. So when we casually suggested that he save his “hand puppets” for the privacy of our home because the other kids might think they looked strange, he totally got that and did his best to control them out in public. Another child might not be as motivated by the idea of fitting in, but I think you’d be surprised how many kids with autism really do want to make friends and have playmates—a lot of inappropriate behaviors, like pushing or following another child really come out of a desire to engage. Those kids have to be taught how to approach another child appropriately.

I do have concerns that the whole “look what the other kid is doing and do that” approach has the potential to backfire when kids are teenagers and are engaging in some activities that parents aren’t so thrilled about. So Dr. Koegel and I have somewhat tempered our message along those lines: we now stress the importance of teaching your child to distinguish between appropriate and inappropriate behaviors and not imitate blindly. We’re all trying to teach our kids that, right?

What were some of the factors you considered in deciding to include stories about your own family?  What were Andrew’s thoughts ten years ago and how does he feel about it now?

When my son was diagnosed, I wanted desperately to know older kids and adults on the spectrum, to have a sense of what was in store for us all. I didn’t know any other families dealing with it until we entered a program designed specifically for kids with autism, and then the other mothers and I were all eager to share stories and advice. I felt it was important to put myself out there and share our early stories because it can be so lonely and isolating to be a parent of a kid who’s developing at a different pace and in a different way from the other kids.

Andrew was very proud when the book first came out: he was around eleven or twelve, I think, and he made a speech at the book party, thanking everyone who had ever helped him and bringing tears to all our eyes. Now that he’s in his twenties, he’s a little more reserved, but he contributed essays to our second collaboration (Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger’s) and remains supportive of the project. I am more careful about the stories I tell, though. If you read my newest essays, you’ll see that they’re more general and less specific. I need to respect the fact that he’s an adult and his stories are no longer mine to tell. He has remained very interested in helping others on the spectrum, and is currently working on a project toward that end—I’m excited about it, but not sure if I’m allowed to talk about it in public yet!