Advice for High Schoolers on the Spectrum -- with Claire LaZebnik

Since I don’t have any experience whatsoever with parenting teenagers, let alone teenagers on the spectrum, I had to find an expert that had survived the teenage years and lived to talk about it for my back to school series.

And I did just that. Meet Claire LaZebnik.

Claire co-authored the book, Growing Up on the Spectrum, with Dr. Lynn Kern Koegel and is proud to be an Autism Mom -- and is also giving away a copy of her book (Totally radical, dude...nevermind, that was cool when *I* was a teenager...not so much now....). So, who better to ask for tips to help parents that are just entering this new realm of life with their child than a woman who had done just that?

Since teenagers notably have a short attention span, let’s get right to the answers, shall we?

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Hi Claire! Welcome to HLW3B – so happy to have you here! Tell me a little about yourself, your family and your son?

Thanks for inviting me. Let’s see . . . I’m the mother of four kids: the oldest has autism, the second oldest has Celiac Disease, the third (and only girl) has Addison’s and Hashimoto’s Disease and the youngest has so far dodged any diagnoses, but we’ll see what the future brings. In spite of all that, we’re a happy, silly, busy family and everyone’s doing great. My husband and I are both writers. He’s a co-executive producer on “The Simpsons” and I write books—mostly novels (my fourth one, IF YOU LIVED HERE, YOU’D BE HOME NOW comes out this September) but I’ve co-written two non-fiction books about autism with Dr. Lynn Kern Koegel who, with her husband, Dr. Robert Koegel, runs the Koegel Autism Clinic at the University of California, Santa Barbara. I originally met Lynn to consult with her about our oldest son, who was five or six at the time. I was blown away by the program she and her husband had developed: it all stems out of ABA (applied behavioral analysis) but they had spent time reviewing tapes of old clients to see how they’d progressed over the last decade or so, and used that knowledge to pinpoint certain “pivotal behaviors”—behaviors which, when appropriately addressed and improved, bring about even greater widespread improvement. Everything she suggested we do with our son made a huge difference. I’m happy to say that this kid—who was completely non-verbal at three and still mostly echolalic at six—is heading off to college this fall. It’s been a long journey.

One important thing I should stress right from the beginning here is that I’m a mom, not an expert. My job as co-author of our two books was to provide the parent’s perspective and to make the prose as user-friendly as possible. Of course, I’ve picked up some ideas from Dr. Koegel along the way, but I’m NOT a clinician!

If you want more specific, expert-reviewed advice, please check out our two collaborations, OVERCOMING AUTISM (aimed at parents of kids who’ve just been diagnosed up through elementary school) and GROWING UP ON THE SPECTRUM (for parents of kids in middle school through young adulthood). The latter also contains some first-person essays by my son, who talks about his own experiences of . . . well, growing up on the spectrum.

Finally, please know that while I’m very good at giving advice, I am by no means a perfect mother. A lot of good intentions fall by the wayside when you’re dealing with four kids with different needs, a house that’s always messy, several pets, and a writing career. I often don’t live up to the goals I’m describing. We’ve done a lot for our son and we’re thrilled with the adult he’s becoming, but I can also look back and wish we’d done more.

As parents, we always think we could do more -- but to me, that is what defines us as being great!  For the many parents out there who are anticipating the start of school already, what should they start doing now to help prepare their child on the spectrum for high school?

Any kind of priming—social, academic, spatial—is going to be useful. You should probably spend the most time on the area that your child needs the most support in. So if your child can hold his own academically but has had trouble making friends in the past, now’s the time to find out who’s going to be in his class next year and see if you can make some connections there. A mutual friend might come in handy to provide introductions and pave the way. If you have the economic means, you could think about throwing a party for some or all of the incoming class. Depending on the severity of your kid’s special needs, you could ask some peers to be helpers (letting them know what the issue is and asking them for their social support in the upcoming years—kids are often incredibly receptive to being directly asked for their help) or simply try to find a friend with a shared interest.

If your child is fairly social but has trouble keeping up in class, you might want to contact the school and get some of the class materials ahead of time so you can give him a solid grounding in them. For example, if your kid’s like mine, getting him to read some of the literary assignments for English ahead of time can really help, so he’s actually rereading them when he’s in class. That extra exposure might make a huge difference in his comprehension (and it wouldn’t hurt for you to read them too, so you can help him work it out when it’s quiz or essay-writing time).

If the school is much bigger than the one she’s been going to, you might want to get on campus ahead of time and walk around, exploring it and getting a sense of where everything is and talking through some of the choices and tasks she’s going to be dealing with during her days there.

We always found it useful to contact teachers ahead of time and just let them know that we were available to give support at home for any issues that might come up. If teachers know you’re willing to provide any necessary tutoring or priming yourself, they’re often not only willing but grateful to stay in touch during the school year, and you’ll know in advance if anything’s worrying them about your child’s academic performance—before he’s hopelessly behind.

The communication between parent and teacher(s) is truly key to success in my book.  Great advice!  What about the nuts & bolts of high school -- like the practicality of a larger school, more kids, more classes, and more transitions? What kinds of things do you suggest parents ask for on their high schooler’s IEP to help them make the transition?

I have to be honest here and confess that it’s been a long time since I’ve had to deal with IEPs because my son switched to a private school in 6th grade. So I’m rusty on the whole thing—IEPs have their own language and code. But I can tell you some of the things you should think about requesting from the school in general.

One is accommodations on tests and quizzes. We stupidly didn’t ask for these, proud that our son was holding his head up academically (well, mostly holding it up) without them. Then we started thinking about college and discovered that you need to prove your kid’s been getting those accommodations in high school to request them on the standardized college tests. We had to scramble to request them for his senior year—and then wondered why we hadn’t done it before. He really could have used the extra processing time all along and the school was willing to keep it on an “as requested by the student” basis—if he wanted more time, he got it, but he wasn’t singled out in any way.

You might also want accommodations on the actual classwork or homework. If your child isn’t up to writing a long expository paper, the teacher might be willing to break the assignment down into short answer questions—or might at least agree to let you do it. That kind of thing. You want your child to be doing work that’s as close to what the other students are doing as possible, but with accommodations if he needs them.

Some other thoughts: you might want to see if the school’s willing to ask for recruits to help your child out during social times, like lunch or recess, eating with him and introducing him to others. Or if they’re open to starting a club that plays to your child’s strengths (a video game club maybe?) Many high schools are willing to host a club so long as you can get a faculty member or parent to be in charge of it, so you might be able to get something going that will show your child to his best advantage and improve his social status.

Love the idea of starting a club!  I once read that all a child needs is ONE friend to make them feel socially successful -- and a club sounds like the perfect place to find someone with similar interests.  High school marks many big social milestones, and one of the biggest is certainly getting a driver’s license. What is your advice for managing the process of getting the license and the inevitable challenges of increased freedom that comes with having a license?

In all honesty, if you can throw money at this problem, then do. (Sorry, but there it is.) We hired someone who had worked with kids on the spectrum before and came highly recommended by some parents we knew. He was wildly expensive and insisted on many many hours of on the road time. He said that kids with autism need to be exposed to as many alternate scenarios as possible, since they have so much trouble generalizing. Our son logged a LOT of miles and had done practice tests several times before taking his real test—and because of that, he passed the first time! Of course, if you can’t afford to hire someone for that many hours, then I think you have to be prepared to put the time in yourself. There’s nothing more important than safety.

I’ve heard you can get a sticker for your child’s license that says something about his having autism. It’s not a bad idea. Police have famously assumed the worst about teenagers or young adults on the spectrum, so if there’s a good chance your child might say or do the wrong thing if pulled over, something official explaining their situation could really help

I’ve always felt that cell phones are the greatest invention of the modern world for parents. We will often tell our teenage sons that they have to check in with us by a certain time when they’re out. If they don’t, we let them know we’re not pleased and that if it happens again, we’re going to cut back on the freedom we allow them. But they’re pretty good about it, because they know we’re pretty easy-going about the rules so long as they’re in touch with us.

Private driving teacher -- GENIUS!  And now that they are driving, what about dates?  High school marks the time when dating becomes the norm. When your child is on the spectrum, how does this make things harder? What is your advice for the moms out there trying to help guide their child through the dating world?

Honestly, I wish I had all the answers for this one. It’s hard out there for a kid who’s a little different but who wants to be dating. Is there anything more subtle and less clearcut than flirting? It’s not something you can teach your kid or prime him for. So there’s no question that kids on the spectrum are at a huge disadvantage when it comes to romance.

As always with social things, you want to encourage your child to meet people with similar interests. There are social groups out there for teens on the spectrum and those can really help. Teaching your son or daughter to be polite, pleasant, well-mannered and to practice good hygiene is important. In GROWING UP ON THE SPECTRUM, we have a whole chapter devoted to various romantic success stories of people we know who are on the spectrum, and the lessons we’ve learned from these stories. (the book covers some of these topics in much greater depth—feel free to take it out of your local library.)

Peer pressure. That term strikes fear in the heart of every parent, but specifically those of us who have a child who is so readily willing to do what they are told to by their friends. I am especially scared of this. What is the best way to discuss peer pressure with our kids?

As frequently as possible! My son hates when I suggest that friends could lead him astray. He’s very literal so as far as he’s concerned, a “friend,” by definition, is someone who would never harm you in any way. But of course peer pressure only works when you actually care about the good opinion of the person pressuring you—a friend can pressure you, a stranger can’t.

We’ve worked hard to instill certain core beliefs in all our kids—drugs are dangerous, driving under the influence is deadly, and you should never break the law—and the corollary to all that is that if a friend tries to persuade you otherwise, you shouldn’t trust that friend. The advantage to kids on the spectrum is that they can be good rule followers. The problem is that we’re always pushing them to be more social, and early on I committed the sin of saying, “play like the other kids,” something I regretted when he was older and I wanted to teach him the opposite lesson of “don’t do what the other kids are doing just because they’re doing it”! Learn from my mistake: teach your child to trust his own instincts rather than to imitate peers who might be untrustworthy.

One thing that’s really helped us is that our son does have a couple of adults he’s willing to confide in (our brother-in-law and a therapist who’s seen Andrew for over 15 years). We know that they’ll always steer him in the right direction and encourage him to talk to them about any sticky situations. If you can find someone like that, someone whom you and your child trust equally, that’s huge. Teenagers aren’t crazy about coming to their parents about problems, but they will talk to other adults who they think are cooler than their parents (and who isn’t?).

I recently have started noticing the value of a 'mentor' in my son's life.  I originally thought that just having an active father would be fine, but I see now how a 'cool' older brother or uncle would come in seriously handy!  Making friends is hard for kids like mine, and I worry that my son will become friends with anyone that will have him – and ultimately that may be the absolutely wrong group of kids. How can we as parents help guide our children’s friendships?

Yeah, that’s a tricky one. I do think (although maybe I’m wrong about this) that because kids with autism tend to be less social than other kids, that actually allows us parents to have a little more control over their friendships. If you’re the one suggesting your child get on the phone, call someone, and make plans (and are prompting him all along the way), you can probably push him toward a kid you like as opposed to a kid you DON’T like. I’ve also found that (and please don’t tell my kids this) simply being more available to DRIVE when the plan is with a kid you like than with a kid you don’t can do a lot toward steering your child in the right direction! (Literally, I guess.)

I do suggest you really think about what you don’t like about any particular kid. If he genuinely seems destructive in some way, you have to do everything in your power to keep your kid away from him. But if he just seems mildly annoying to you—not the kind of kid you’d pick out yourself, but not evil either—then think about the possibility that maybe the friendship works for your kid on some level.

I fretted a lot about my son’s choice of friends in middle school, because he was often attracted to the loud, boastful, obnoxious types, and the beginning of high school was rocky socially (he started off with a group of kids who later rejected him) but in the end he found a couple of really great friends, boys we liked and trusted and whom he stayed friends with all the way through. In the end, his instincts were right—which I keep reminding myself about as he heads off to live at college!

College?  Gulp.  : )  Any last piece of advice for those Autism parents getting ready to embark on this new – and very scary – part of life with their child?

Sometimes you just have to close your eyes, say “go ahead,” and hope for the best. You can’t hover and protect your child every second anymore. Those days are gone. It’s scary. Your kid is walking off a cliff and there will be bruising and injuries. But the goal is to give her the confidence to move out into the world without you, and she can’t do that if you never let go.

On the other hand . . . Dr. Koegel and I are great believers in “stealth” parenting. You need to fade back, but you don’t need to disappear. A certain amount of controlling the things you can control (staying in touch with teachers, hiring the best driving instructors, visiting school and watching your child from a distance to see how he’s doing, etc.) is valuable. You want your child to succeed as much as possible, which doesn’t mean you cut off opportunities, just that you manipulate those opportunities to the best of your abilities.

Thank you Claire for taking the time to be here today! I am inspired by those women who have walked this path before me, just like you!

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H