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Parenting teenagers on the autism spectrum

Posted by Lylah M. Alphonse  May 5, 2010 12:01 PM

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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.jpgLaZebnik 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 lalphonse@globe.com  and follow her on Twitter @WriteEditRepeat. You can read her entire interview with Claire LaZebnik at Write.Edit.Repeat.


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13 comments so far...
  1. As an autism mom, Overcoming Autism is one of my all-time favorite books because of Claire's down-to-earth writing style.. (and of course Dr. Koegel's expertise..)

    I cannot wait to read the new book!

    Posted by Judith Ursitti May 5, 10 05:50 PM
  1. Having a 20 year old diagnosed at 2, I have been frustrated at the literature that always speaks of the early years and diagnosis. It's time to start looking at the population that is growing older and help them be mainstreamed into today's society.

    Posted by Lori May 5, 10 06:31 PM
  1. You can purchase gps trackers from www.spyparent.net for your autistic child. They have coupons on their website.

    Posted by Spy Parent May 6, 10 12:35 AM
  1. As a parent of an adult son with autism I am thrilled with all of the breakthroughs that are being made and with the attention that Autism is presently given. However, there is so very little available for adults with autism. My son has an IQ that likely exceeds mine, he drives a car and attends college but the likelihood of him becoming successfully employed and supporting himself are minimal. We need to actively and aggressively educate the public about the challenges met by these very employable adults in order to prepare for the future. Today's children and teenagers with autism are going to be adults before we know it, there is no time to waste.

    We also need to celebrate folks like Walgreen's VP Randy Lewis who has implemented the process of employing adults with autism in their stores. We need to support businesses that support our children!

    Posted by Ingrid Keizer Wilson May 6, 10 09:49 AM
  1. I have an 18 year old who was diagnosed at 8. I have also found it hard to find books to help out with problems he faced as an older teen and what challenges he will face as an adult. My concerns are college and getting him ready to face the world. I am almost 48 and want him to be able to function in society when I am no longer alive to help.

    Posted by chris allen May 6, 10 10:01 AM
  1. Claire's interview sounds just like what our 14 year-old daughter is going thru...the struggles of teen-age conversation.She was diagnosed with PDD at 3 years and Asperger's at 5 years. She is fine with adults, but she sits home weekends. She is fortunate to be accepted in a peer group at school, but several of the members have dysfunctional family lives and are not the best choices to help guide her. I feel like her social success will improve as her peers mature and become more accepting of differences rather than conforming to the pressures of needing to imitate those who act "cool." The hardest part for me as a parent are the giggles and snickers I observe from kids her age when she does something in public that isn't deemed "cool".

    Posted by Carrie May 6, 10 10:05 AM
  1. I'm beginning to feel like I'm the only one out there dealing with a nonverbal, aggressive teenager! Proms and dates and hanging out with friends are a nonissue for us at this point.

    Posted by DorthyM May 6, 10 10:07 AM
  1. As a Language Stimulation Specialist, I have found that many of us mainly focus on how to treat Children with Autism Spectrum Disorders because that is the vast majority of our clients. But that is only because we only deal with them for a portion of their lives. Being a therapist, I forget that at some point in a child's life, it is not just about how to help them, but eventually it is about helping them help themselves.

    I have not read this book yet, but it looks like it will definitely benefit many parents as their child grows into an adult. I will definitely be recommending this book to all of our client's parents; specifically the parents of our older patients.

    I work for Speech Therapy Center which is located in Miami, FL where we are promoting communication wellness and awareness throughout the community. Feel free to visit our website and blog at www.myspeechtherapycenter.com

    Posted by Cristine Jimenez May 6, 10 11:28 AM
  1. Dorthy--GROWING UP ON THE SPECTRUM covers issues of adulthood for ALL people with autism, not just the high-functioning ones--we discuss how to deal with aggressive behavior and how to find supportive living situations. But Ms. Alphonse was interested in my personal experience, so in this interview I was mostly talking about my own son and the issues he's dealing with. Good luck with everything.

    Posted by Claire LaZebnik May 6, 10 12:31 PM
  1. My Son, Nick was diagnosed in the 3rd grade. He is in High School and struggles with the rude comments and being made fun of...I am suprised about how much better he has done in High School. He has joined the ROTC and FFA. This makes him a part of something, which is what he has always longed for..he still has the issues with other kids making fun of him, but hopefully one day that will end. He also says sometimes that he feels like he is losing his mind. That definitely scares me. All we can do as parents is be the best we can be.....and lots and lots of Prayer:)

    Posted by Mary G. Nashville May 6, 10 06:25 PM
  1. I've got a 14 year old diagnosed at 3 doing well. Not sure what's ahead. He's brilliant but his 11 yr old brother is more (street smart). My biggest concern is when the younger one starts acting older than the older one, and what that will do to the relationship.

    Posted by John May 6, 10 11:25 PM
  1. As someone on the spectrum, yep, teen years are tough. It gets better though - I know lots of fully adjusted 30 year olds. And college was a lot of fun.

    Remember, its a developmental delay, meaning you do get there eventually. And Asperger's can be a gift - I know many incredibly succesful adults with Aspergers. Its just that one always hears of the failures.

    Even dating eventually gets easy, once you learn the rules. In fact, everything is easy once you learn the rules - its figuring out the rules that is hard.

    Posted by asperger's guy May 7, 10 12:54 AM
  1. Thanks for the positive words, asperger's guy - needed to "read" that!

    Posted by ASD Mom May 17, 10 02:20 PM
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about the author

Lylah M. Alphonse
Lylah M. Alphonse is a member of the Globe Magazine staff and mom and stepmom to five kids. She writes about juggling a full-time career and parenthood at The 36-Hour Day, and about everything else at Write. Edit. Repeat. When she's not glued to the computer or solving a kid-related crisis, she's in the kitchen or, occasionally, asleep.

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