One of the hardest things about parenting older kids who are on the autism spectrum is recognizing that the issues they're dealing with as teens are very different from the ones they dealt with in elementary school. It's so much easier -- and more comfortable -- for us to think about birthday parties and playground friendships than it is to tackle the prom and dating, isn't it?
"Suddenly, the question is not simply, 'How do I teach my child this or that?' but a much more complicated 'How do I teach my child not to need me to teach him anymore?'" writes Claire Scovell LaZebnik in Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's.
LaZebnik is a writer and a mother of four who lives with her family in Los Angeles. She grew up in Newton and earned her bachelors in English Literature from Harvard University; her latest novel is due out this September.
LaZebnik wrote "Overcoming Autism" with Dr. Lynn Koegel in 2005; after being approached about writing another edition of the book, they ended up with an entirely new proposal.
"Both Dr. Koegel and I felt that the needs and issues of older kids on the spectrum really weren't being addressed by anyone," LaZebnik says. "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."
The result is "Growing up on the Spectrum," which was published in March.
"Once your kid reaches middle school, parents are really supposed to fade out of the social picture," LaZebnik points out. "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."
"Add to that the perplexities of sex, alcohol, driving instruction, standardized testing, dating, eating out, going to clubs ... on and on and on," she says. "There's so much more they have to deal with and parents just can't be in the picture all the time.
Her oldest son, who contributed essays to "Growing up on the Spectrum," was diagnosed with autism when he was 2 1/2; he is now 18. “He had a lot of self-stimulatory behaviors when he was little, like flapping his arms and making little hand puppets,” she says. “Those faded away as he got older. He bites his nails now -- much more socially acceptable!” Her two younger sons, ages 16 and 10, and her daughter, age 12, are neurotypical. The difference between navigating the teen years with an autistic child, versus doing so with neurotypical (NT) children, is highlighted when one looks at their thought processes.
“My son who's on the spectrum is a very rigid thinker,” LaZebnik describes. “He needs clear-cut 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.”
She credits Applied Behavioral Analysis (ABA) with improving her son’s symptoms of autism. (Her co-author, Dr. Koegel, was one of his therapists.) “There is no question in my mind that right now applied behavioral analysis is the only proven approach toward improving the symptoms of autism,” she says. “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. And you never punish: All reinforcement is positive. You ignore or redirect bad behavior.”
“I know you can't judge by any single experience -- which is why research and longitudinal studies are so important,” she adds. “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!”
The challenges she faced as her oldest son navigated adolescence, she says, were similar to ones faced by all parents of teens: exposure to alcohol, driving, and social situations. “You have to hope you've instilled the right values from the beginning,” she says. “ One advantage to having a kid on the spectrum: they tend to be rule followers. Socially things are harder for them than most kids.”
The biggest challenge for her as a parent? Teaching him not to trust everyone. “We've had a variety of experiences with people -- friends and acquaintances -- taking advantage of him,” she says. “The problem is, you spend their early childhood teaching kids that everyone at school is their ‘friend’ and it's hard to un-teach it with a kid who falls into rigid ways of thinking.”
Like many children on the spectrum, her son had to learn social conversation rather than figure it out organically. “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,” LaZebnik points out. “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.”
If your child has just been diagnosed with autism, don’t fall for the latest fad treatment, LaZebnik says, and 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,” she says.
But, most important: “Don't think that there's a different, better child ‘hiding’ behind the autism,” she warns. “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.”
Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at firstname.lastname@example.org and follow her on Twitter @WriteEditRepeat. You can read her entire interview with Claire LaZebnik at Write.Edit.Repeat.