Parenting a teenager is hard enough – but what if you're the parent of a teen who has autism? Where can you go for guidance on how to teach them about what comes after high school?
Lynn Kern Koegel, who co-founded the renowned Autism Research Center at the Graduate School of Education at UC Santa Barbara, and her writing partner Claire LaZebnik, a parent of a child with autism, decided to give parents a place to turn for support, advice and hope.
Koegel and LaZebnik have written "Growing up on the Spectrum – A Guide to Life, Love and Learning for Teens and Young Adults with Autism and Asperger's" specifically for parents who have kids in this age group.
What does "living on the spectrum" mean? There is no genetic test that determines if a child has autism, Koegel explains. But certain behavioral characteristics are associated with autism and Asperger's Syndrome.
"There are three areas – one is a difficulty in communicating, the second is difficulty with socialization, and the third is having restricted interests," she said.
Kids on the spectrum may not play the way other kids do, may line toys up repeatedly or have hand slapping or rocking movements rather than actually interacting.
"To some extent, we all have a little bit of this," Koegel said, "but the difference with those who have autism is that it interferes with their ability to act with others."
LaZebnik's son Andrew, a high school student, provides insight that most books on the subject of autism never seem to include – the point of view from the child living on the spectrum. While too shy to be interviewed for this story, he is honest in the book about growing older and how he copes with everything from being teased, going out with girls, and his feelings about going to college.
"One time in the ninth grade, we were playing a game in Spanish class. It was my turn to roll the dice. Other kids acted like I didn't know how to do it, so they made fun of me," he said. "They lectured me, rudely. That made me feel really bad about myself."
College, where he hopes to major in computer design and building Web sites, will bring Andrew a step toward living independently, but he says in the book that he knows it won't be without challenges.
"I am looking forward to being able to major in something that I really want to do for a career. I think it will be very stressful, but a great experience," he said. "I want to live with roommates, but not with anyone who is rude and would make me miserable."
The book is separated into sections that address five aspects of adolescence on the spectrum: friendship, romance, school, life during and after college, and improving life. They also tackle parental concerns – dating, maturing bodies, bullying (both targeting them and perpetrated by them) and how to get and keep a job.
The most important thing to concentrate on with this group of teens is their communication skills, the authors say.
LaZebnik feels that schools have a tendency to work on education, but parents need to demand that their children's individual education plans include ways to include them in social situations that reach beyond being with their aides.
"Teachers are sometimes unwittingly unkind to kids and tend to keep them away from the other students," she said. "As parents, we need to stay on top of this."
Parents, LaZebnik continued, must help educators realize that "the social jungles like the lunchroom and play yard are just as important to (the children's) education success as memorizing history facts."
Koegel adds that getting an education is not the same as making sure kids on the spectrum are ready to move on to the next step in life. "We need to sit in on therapy and teaching sessions and follow through to help make them independent and successful in all the various areas of concern."
LaZebnik recalled that Andrew loved trains as a young child, and so they found train clubs where he could socialize: "This way he was with kids who also had a great love of trains and this gave him a social group to enjoy."
But now that he is a teen, it's tougher to find ways to help him develop socially, she said.
"I find I need to ask and answer 'How do I teach my child not to need me to teach him anymore?' The stakes are even higher and the risks greater for kids who can drive, go to parties where alcohol is served, live in college dorms and are still innocent and susceptible to peer manipulation."
Koegel said that because these kids are more trusting and naive, they may go along with drinking games, trying drugs or exposing themselves in public, at the coaxing of their peers in an attempt to be popular.
LaZebnik felt compelled to work on making sure Andrew would check in on his own with his cell phone at certain intervals – training him to gain confidence to be in certain places, at certain times. The more he responded as asked, the less frequently he had to check in.
Parents need to do the research about what is the right thing to do for their child, Koegel and LaZebnik add, and not get sidetracked by the latest miracle. Steady slow progress will prove to be much more rewarding and make for a life of successful changes, they said.
"As a parent of four, Andrew being our eldest, we've learned so much from him," LaZebnik said. "Our kids tend to be very kind to one another. We as parents have been shaped by our love and concern for our family. Andrew made it possible for us to enjoy all of our children's uniqueness. It's the way we look at things; it's not a disability, but a wonderful difference."
Contact the writer: Carine Nadel is a freelance writer who lives in Laguna Hills. Send questions or comments on this story to firstname.lastname@example.org.
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