It's so much easier to think about playgrounds than the prom, and while showing your preschooler how to make and keep friends is tough, dealing with teens and dating is even more so.
Bookstores and the internet are overflowing with information about early intervention for kids on the autism spectrum, but there's precious little out there to guide parents who are navigating the teen years with a child who has autism. One wonderful resource is Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's, written by Claire Scovell LaZebnik and Dr. Lynn Kern Koegel. (The duo also penned the 2005 book Overcoming Autism.)
A mother of four, the oldest of whom has autism, LaZebnik is a Newton, Massachusetts native who lives with her family in Los Angeles. In addition to the two books about autism that she's cowritten with Dr. Koegel, LaZebnik is the author of four novels, the latest of which is due out this September.
I interviewed LaZebnik for an In the Parenthood post that's live now on Boston.com (click here to read it), but of course there was so much more to the interview than what ended up in the article. Here's the full Q&A, a must-read for any parent with an autistic child of any age.
What was your inspiration for writing Growing Up on the Autism Spectrum?
Dr. Lynn Koegel and I had already written Overcoming Autism, which was a modest success: It really built through word of mouth and was continuing to sell steadily several years after publication. The publishers approached us about doing a new edition and asked what we would want to add to round out the book. Both Dr. Koegel and I felt that the needs and issues of older kids on the spectrum really weren't being addressed by anyone -- there seemed to be an assumption that these kids either "got cured" or ended up in special homes where they lived separate lives. But of course we both knew many teenagers and adults who were on the spectrum and leading fully integrated lives. They and their parents still needed a lot of support. We said that we'd want to add a section addressing the needs of these older kids and young adults, and the publishing company suggested we do a proposal for a whole new book. So we did.
What are the main differences you've noticed when it comes to navigating the teen years with an autistic child compared to doing so with your younger children, who are neurotypical (NT)?
My son who's on the spectrum is a very rigid thinker. He needs clearcut definitions of right and wrong. Anything hazy or gray confuses him. For instance, if I try to get him to see that a friend behaved badly, he'll often get upset with me because a friend is a "good guy" by definition, in
his book. Whereas my NT son is very intuitive, very thoughtful, very aware. We can talk about anything and discuss every aspect of it and really hash out the confusing ambiguities of high school life.
So much news is focused on possible causes, early intervention and controversial treatments for overcoming autism. What treatments did you try when your son was younger, and what do you think made the biggest difference?
There is no question in my mind that right now applied behavioral analysis (ABA) is the only proven approach toward improving the symptoms of autism. There are no biological or medical interventions that the research supports. I know you can't judge by any single experience (which is why research and longitudinal studies are so important), but my family stuck to behavioral interventions from the very beginning and our son (completely nonverbal as a toddler) is going to be a freshman at a regular four-year college next year. So I'm very happy we took the approach we did!
Sometimes people have the wrong idea about ABA -- they think you're supposed to sit the kid down, drill him on various things and stick an M&M in his mouth when he's right. It's not like that (at least not when you're working with people like the Koegels). You want your child to learn the way an NT kid learns: through play and interaction. The idea is to find natural reinforcers to encourage your child to talk and engage. Say, for example, your nonverbal child loves to swing. You know that when he swings he goes into a quiet and withdrawn place, but you also know it's something he wants enough to "work" for it. So when he sees a swing and gets excited, you model saying the word "swing" for him and you don't let him actually get on the swing until he's made some attempt at the word. He doesn't have to say a perfect "swing" by any means: he just has to try. Then he gets to swing. You've used something he gravitates toward
naturally to reinforce his desire to communicate.
And you never punish: all reinforcement is positive. (You ignore or redirect bad behavior.)
What new challenges have you faced as your son has grown into a teenager?
Same ones all parents face: your kid is dealing with serious issues like exposure to alcohol and tough driving situations and you have to hope you've instilled the right values from the beginning. One advantage to having a kid on the spectrum: they tend to be rule followers. Socially things are harder for them than most kids.
How did the therapies for your son change as he went through adolescence?
Well, at a certain point he stopped needing speech therapy and that had been a HUGE part of his life when he was little (sometimes as often as three times a week). We cut back gradually on anything that made him feel self-conscious about being different. But that didn't mean we cut out support: there's a behavioral therapist who's been seeing him since he was three who still comes once a week. The way they interact has obviously changed hugely: they played games when my son was little, and now they just talk about whatever's concerning him. He's been an invaluable resource for my son who looks forward to his visits as much at 18 as he did at 8.
He went to some friendship groups in middle school: that was a good age to do it, because he was past the elementary school age where parents arrange playdates but not yet up to high school when the need to be completely independent kicks in (and he refused to keep going).
In your book, Dr. Koegel points out that time outs don't work well as punishment for kids on the spectrum. Does this mean that the traditional "You're grounded!" doesn't work well with autistic teens? Why not?
Right, and for the exact same reason: kids on the spectrum often find social interactions to be difficult work. It's easier for them to withdraw and spend time on the computer or reading or playing with a bit of string. So if you try to punish behaviors by giving them a time out, you're
unintentionally REWARDING them -- they may experience the quiet time as a huge relief--and those bad behaviors can increase.
With teenagers, your goal is to get them to be socially engaged and to have friends. Because of that, I can't imagine why on earth you would ground an autistic teen! You might need to increase supervision (if he's misbehaved while on his own) but the last thing you want to do is take away access to a social life.
What was the biggest challenge for you (so far) in parenting an older child on the spectrum?
Teaching him not to trust everyone. We've had a variety of experiences with people -- friends and acquaintances -- taking advantage of him. One example: when he was in ninth grade, an older kid in the high school whom he barely knew asked to "borrow" a twenty. Of course the kid never gave it back and always claimed "not to have it on him" when my son asked for it.
The problem is, you spend their early childhood teaching kids that everyone at school is their "friend" and it's hard to unteach it with a kid who falls into rigid ways of thinking.
The other tough one is social conversation. Kids don't talk like adults but kids on the spectrum don't necessarily fall into the same patterns of speaking or have the same interests as other kids their age. If you try to "teach" them social conversation at this age, they start to sound like
45-year-olds and not like teenagers. And it is hard for those who have language processing issues to keep up with the rapidity of teenage conversation. Sometimes they fall behind and then say something that's really off-topic and others aren't always kind about that.
What was your son's original diagnosis? Did any part of it change as he got older (SPD symptoms that were resolved, food intolerances that went away, etc.)?
Well, he learned to talk. That was pretty major! He was diagnosed at the age of 2-1/2 with autism. He had a lot of self-stimulatory behaviors when he was little, like flapping his arms and making little hand puppets. Those faded away as he got older (he bites his nails now -- much more socially acceptable!).
Do you think immersive technology -- games like The Sims or social media like Facebook and Twitter -- is helpful or harmful for teens on the spectrum?
Oh, man, that's a tough one to answer. In all honesty, I think technology is only as good as how it's used. Can online access lead to problems for kids on the spectrum? ABSOLUTELY. Can it aid them socially? Yep -- that too. If your child is spending all of his time online, that's bad -- he needs to have a real social life, not a virtual one. But if he's using the internet to stay in touch with real friends, or connect to people with similar interests, that can be a good thing (so long as he knows all the basic rules: never meet a stranger in real life, never friend a person you don't know personally, etc.). My son has a website he manages on a subject he's passionate about and it's truly a great joy to him to maintain it and have people visit it and comment. I don't see anything wrong with that at all, so long as he's going out with friends on the weekends.
Your book mentions two terms that I think a lot of parents with younger kids may not have heard about yet: Self Management and Functional Analysis. Please explain?
"Self Management" sounds more technical than it is. It's something we all do when we try to keep track of a behavior and reward ourselves when we're doing well with it: like writing down your daily calorie intake in a diet journal and then letting yourself have a reward (new shoes perhaps?) if you keep below a certain number. With kids on the spectrum, you want to teach them to monitor their own behaviors, so other support can be phased out. Say your kid has trouble sitting in his seat at school. You can go over what makes "good sitting" with him (e.g. feet on the floor, eyes on the teacher, etc.) and see how long he's comfortable doing it -- maybe three
minutes. So you teach him to keep track of this behavior and give himself a check on a chart whenever he can go three minutes without getting up or talking or anything. And if he gets a certain number of checks, he gets a reward, which you can come up with ahead of time. As he gets better at it, you can increase the time.
"Functional Analysis" is essentially a fancy way of saying, "Let's figure out why your child is behaving the way he is." You don't want to respond directly to the behavior; you want to figure out what's TRIGGERING the behavior and change that and/or find a replacement behavior that serves the same function but is acceptable. Remember how a time out may actually be reinforcing a kid's bad behavior? If you notice that his bad behavior -- say talking in class -- is increasing and you keep giving time outs, a functional analysis might make you realize those time outs are reinforcing the bad behavior, not discouraging it, because the child LIKES getting to leave the classroom. So instead you would work to keep him IN the classroom, and instead find a better way to control the talking, like using self-management: If he can get through ten minutes at a time without talking, he gets a check or even a direct reward. Now he has an actual reason to control his talking, something that makes sense to him, whereas before he had a reason TO talk. There are many ways to go about doing the functional analysis; Dr. Koegel and I provide charts to help you in our first book.
What are the biggest hurdles you think teens on the autism spectrum have to face?
When they're little, you can teach them how to make conversation with their friends ("Your lunch looks good") and set up playdates for them and then supervise those playdates so they're successful (take the kids somewhere really fun). But once your kid reaches middle school, parents are really supposed to fade out of the social picture. Kids are supposed to make their own plans, keep up with sophisticatedly crude discussions, and be able to go out on their own without supervision. These are all tough things for kids on the spectrum, and it's no surprise that many of them have little to no social life during the teen years. Video games are so much easier to deal with than unpredictable humans! Add to that the perplexities of sex, alcohol, driving instruction, standardized testing, dating, eating out, going to clubs . . . on and on and on. There's so much more they have to deal with and parents just can't be in the picture all the time.
That's why we wrote Growing up on the Spectrum: to help guide parents through these tough but potentially wonderful and rewarding years.
What advice would you give to parents who have just learned that their child has autism?
Don't fall for the latest fad treatment. Listen to doctors and PhDs, not celebrities. Do research: seek out the most reputable clinics and practitioners in your area. Most pediatricians are good sources of recommendations (our whole journey began when our pediatrician referred us to a wonderful speech therapy who suggested we check out the autism clinic at UCLA). Realize that if there were a medical cure for autism, we'd KNOW about it, but that so far ABA is the most successful approach. Don't work with anyone who says, "I'm the only one who can cure your child" -- the right interventions can be done by anyone who's thoughtful and caring, including
YOU and the rest of your family. Read our first book, Overcoming Autism -- we have tons of information about getting started working with your child.
Most importantly: Don't think that there's a different, better child "hiding" behind the autism. This IS your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child (you may have to work harder
on some of this, but that's the goal).
[Edited to add: A reader emailed to tell me that my In the Parenthood post about Claire LaZebnik was picked up by Autism Speaks, and there's a great discussion about it at their Facebook page right now, with moms and dads weighing in with their own experiences parenting teenagers on the spectrum. Click here to read their comments! ]