Growing Up on the Spectrum

by Lynn Kern Koegel

  But First …

  Before you move on to the rest of this book, there are some important things that every parent of a child on the spectrum should be aware of, no matter what stage of life the child is in. So here’s some general advice that I’d like to pass on to you:

  Find the Right Therapists to Work with Your Child

  There are many programs out there and many different people to choose from. To find the right therapy, you need to first make sure that there will be measurable goals. If you find that your therapist doesn’t have any measurable goals, you may want to consider looking for another one. Measurable goals enable the therapist to measure the pretherapy levels of your child and demonstrate that your child is progressing under intervention.

  For example, if your child stays in his room on the computer all day long, the therapist will need to make goals to change that behavior and be able to document the steps being taken toward moving him into a more active social life. Or if your child is bringing up inappropriate topics on a regular basis, your therapist should be documenting a step-by-step program for improving the topics during social conversation. In short, make sure the intervention is practical and working, and that means monitoring it on a regular basis to be sure that your child is improving.

  Similarly, if you find someone whom your child is just not motivated to see, try to switch therapists. Some adolescents and young adults on the spectrum like therapists with a more assertive personality, and others prefer a more “kick back” personality type. Finding the right personality match will help your child stay motivated.

  Never Give Up

  I saw a nine-year-old last week. He spoke in short sentences and only to request items. The parents told me that the school and other state agencies wanted to cut way back on his services because they felt that he wasn’t making gains. He was easy to teach and picked up a few new things just in the few hours I worked with him. I couldn’t believe that anyone wanted to give up on him. We also saw a fifty-year-old man recently who was nonverbal. The past interventions he’d had were ineffective. After a few weeks of our working with him, he began using a few words—for the first time in his life. He had simply never had some of the newer and more motivating interventions. As a parent, or a caring professional, you’ll need to make sure that no one gives up on your child—especially not you!

  Treat Your Child as Normally as Possible

  I said this in Overcoming Autism, and I want to emphasize it in this book. People on the spectrum need to be treated as normally as possible, even though they have a disability. No matter what age your child is, try to keep her learning things other students are learning, participating in regular school classes, attending social functions, working, and so on. And have the same behavioral expectations of her that you would of any other child.

  One thing that’s especially tricky during adolescence is balancing enough support for your child with the need to encourage independence. With a younger child, you can control most aspects of his life and still be doing essentially what every parent around you is doing—in other words, it’s “normal” to oversee and regulate his diet, his friendships, his schoolwork, his free time, and so on. But as kids grow older, most of them will wrest control away from their parents, and even though for some families it can turn a little dark and ugly, it’s a necessary step on the road to independence. Most kids on the spectrum, though, need more support than other kids at all ages, and part of your job now is to recognize when you can fade into the background and trust your kid to find his own way, and when you must intervene with supervision, monitoring, and direction (even if other kids his age are more independent). It’s tricky. Your goal is to step back, but sometimes stepping back will only leave your child flailing about helplessly.

  We’ll try in this book to give you some guidelines for continually aiding and monitoring your child without babying her or squelching her fragile independence, but that delicate balance is something you’re going to have to constantly be aware of.

  Coordinate

  It’s now just as important that your older child’s or adult’s intervention be coordinated across all settings as it was when he was younger. If he still needs intervention, make sure that everyone is consistently doing the interventions and helping your child to use newly learned behaviors.

  If you’re teaching your child to ask more questions in social conversation, make sure that everyone who works with him or is close to him, including his teachers, knows to encourage him to ask questions when chatting with him. If you think that your child needs to learn a new skill or behavior, make sure that you get everyone on board. Your child will learn faster and maintain the behavior longer if everyone is coordinated.

  Think Long Term

  Now that your child is older, you’ll need to take the long view. If you want her to fit in, for example, make sure that she isn’t watching movies that younger children watch. Always insist that the goals for your child are meaningful and will help her in the long term. Finally, you will need to make sure that your expectations are high enough. At home, make sure that you aren’t doing too much for her. She’ll need to learn skills that will help her live independently and be self-sufficient. So everything you do, every goal you set, and every issue you (and the school) target should be making a difference in your child’s life in the long run.

  Don’t Follow Fads and “Miracle Cures”

  This may seem obvious: when you call them fads and put “miracle cures” in quotation marks, everyone can agree that you’re talking about something that’s probably spurious. The problem is, when you’re researching approaches, as all parents do, you’ll often hear about treatments, medications, and even medical procedures that sound as if they might be reputable. Maybe someone you know is following some new medical protocol and swears by it. Or a parent you meet tells you how his son improved with some kind of therapy you’ve never heard of. Do research before you plunge into anything! Ask the most established professionals you trust what they’ve heard about this latest approach and whether they’ve seen results with their own eyes. Read everything you can—not just the information the proponents of the method are putting out there, but any studies that have been done proving or disproving its efficacy. And if there aren’t any studies? That’s a problem. No studies mean the method isn’t research based, and its success is probably subjective. If no one you trust knows anything about it, it probably isn’t the miracle you’ve been hoping for.

  Helping your child isn’t about miracles—it’s about effort, care, and thought. The ultimate results may feel miraculous when you look back over the previous decade or two and realize how far that little boy or girl who once couldn’t even speak has come, but you’ll have worked for those results every step of the way.

  CLAIRE

  It’s almost funny to look back over the decade and a half since Andrew was diagnosed with autism and remember all the “cures” that have come and gone in that time. I won’t bore you by listing them all, but as a general rule, if the latest approach involves pig body parts, don’t go there.

  I know a lot of people who are doing serious autism research, trying to figure out the genes and the triggers that lead to the neurological damage that leads, in turn, to the symptoms of autism. There probably isn’t one single cause, so there might never be one single “cure.” I’m not ruling it out, but I’m also not sitting around waiting for it to come along, which is a good thing because, thanks to all the behavioral interventions we did instead of waiting for that cure, Andrew is doing great.

  I trust the people I’ve worked with who are in the field to let me know if there is a real breakthrough. I won’t do anything invasive or drastic until I see some hard research and hear from experts whom I respect that it works. And I’m certainly not going to abandon the strategies that have worked for us for so long to go chasing after some unproven dream pill or procedure.

  Sure, I’ve played around with my son’s diet from time to time and tried some fu
n therapies that were recommended to me, because why not? Even the silliest therapy can have a beneficial effect if your child and the therapist really bond and have fun together. That doesn’t mean it “works” in any medical sense. It just means that keeping your child engaged and involved is always a plus for his progress. We had a “music therapist” who played the piano and sang with Andrew when he was really little and he smiled his way through the whole thing. Did I think the music had some kind of mystical curative power? Not for a second. But the therapist was warm and loving and Andrew liked to sing. So overall it was a positive and social hour for him.

  In the end, though, it’s the behavioral interventions that have made the real difference for us over the years, and I think that’s true for most of the kids I know who are doing really well. I’ve known some parents who wanted to “cure” their child so badly that they went chasing after every miraculous claim that popped up. Not only were their hopes cruelly dashed over and over again (usually after a short period of believing they saw the miracle they’d hoped for), but they lost valuable time when they could have been doing the interventions that work, and it slowed their kids’ progress.

  Hope is a wonderful thing. Expect incredible things for and from your child, but anchor those expectations in the procedures, interventions, and therapies that have proven track records.

  DR. KOEGEL

  Love Your Child as He Is and Help Him Grow

  There are two emotional traps parents of kids on the spectrum can fall into. One is to keep thinking, “This isn’t my child; my child is hidden behind this child.” The other is to think, “My child is unique and that’s a wonderful thing, and I shouldn’t attempt to change her in any way.”

  Don’t fall into either trap.

  The first is wrong because there is no “real” child hidden behind the child you know. Look at him—that’s your kid. Love him—he’s your kid. Enjoy his strengths and quirks—they make up the unique person who is your kid. But also help him overcome his areas of weakness—he’s your kid and you owe him that.

  It’s interesting that parents who wouldn’t hesitate to teach a typical child better manners or improved skills question the morality of working with their child on the spectrum to make her more outgoing or better able to navigate the world around her. You’re not betraying her because you want her to be more comfortable in social situations. You’re not forcing her to be “like everyone else.” You’re doing exactly what a parent should do: guiding your child to be the kind of person the world responds to positively, so her life will be easier and filled with friendship.

  Don’t Be Afraid

  That’s easy to say, right? But you have to overcome your fear of what might happen to your child out in the world and start encouraging him to be independent and self-reliant. It’s easier and much less terrifying to keep your child close to your side and believe that you’ll always be there to protect and defend. But—and you know this—as your kid grows up, he needs to find his way in the world without a parent always there to pave the way for him.

  Once a Parent, Always a Parent

  Once we’re parents, we’re parents forever. We need to be there for our kids as they grow up. When my kids went away to college, I was surprised how many times they called me and came home to visit. They needed support, advice, and encouragement even as adults. If you read the literature, most people get jobs through connections, and make friends through other friends and family. Kids on the spectrum may need a little more support from their families than typical developers, but all kids need some. It’s okay to worry—all parents do. It’s okay to keep giving your child advice—all parents do. And it’s a great idea to make sure that you have a support system around your child to help her reach her potential in her career, in recreational activities, and with her peer group.

  Take Care of Yourself and Your Family

  Remember: one important aspect of keeping your goals high for your child is expecting him to be a supportive family member. That means allowing other members of the family as much time pursuing their dreams and goals as he gets. Too often the teenager with special needs ends up dictating what the rest of the family does—a vacation gets picked because “he’ll like it and behave,” a restaurant is chosen because “he won’t fall apart,” a parent doesn’t show up at a sibling’s event because “we’re worried about taking the other one.” Believe me, we understand how hard it is not to give in to making life easier for your child on the spectrum and simplifying things that way, but you’re not doing anyone a service. It’s far better to teach your child to control his behaviors and respect other people’s needs than to defer to him out of fear or pity. The goal is to make his life and yours as normal as possible.

  You also want any siblings to feel just as loved and attended to as the child who’s on the spectrum—don’t center every family activity around just that one child, but let all the kids have their turn in the spotlight.

  In general, the siblings I’ve met through our clinic work have been wonderful—generous and supportive and proud of their brother’s or sister’s successes. We’ve even had several graduate students who went into the field because of their experiences growing up with a sibling on the spectrum. Don’t take advantage of your kids’ good nature, but shower them with praise, attention, and love. If one of them expresses some concern to you that her sibling’s behaviors are affecting her life in a negative way, don’t ignore her or tell her to “get over it.” You need to fix the problem. I’ve seen kids who’ve been physically abused by their siblings on the spectrum and others who are afraid to invite friends over because their siblings’ behaviors aren’t controlled at home. It’s your responsibility as a parent to see that interventions are put in place to solve these problems! There’s specific information on how to do that in this book, and in our first book, which also includes a long discussion of the stress that an autism spectrum disorder can cause a family, and how best to cope with it. Please, if you’re experiencing anything along those lines, read that book as well as this one and take action. Follow whatever steps you need to keep your family close, happy, and functioning.

  2. Terms, Interventions, and Techniques

  I’ve started reading some of the other chapters, and you keep talking about “priming” and “prompting.” I know how to prime a pump and prompt an actor, but I have no idea what you mean in this context. Please explain.

  CLAIRE

  I remember one of the first times I met with Dr. Koegel, way back over a decade ago. We had taken Andrew to see her and she was instantly and brilliantly focusing on the areas we needed to help him on. We talked about the need to decrease his “hand puppets” (the way he self-stimulated at the time) and while she said it was fine now and then at home, we could decrease his stimming at school with a “self-management program.” I nodded and smiled and agreed that a self-management program was a good idea.

  I had no idea what a self-management program was.

  Of course, I should have just asked—Dr. Koegel would have happily explained it to me. But I was embarrassed to admit I didn’t yet know the term. We took some of the Koegels’ books home with us so I was able to look it up later, but I did have to bluff my way through a good part of our first discussion.

  Writing Overcoming Autism together was an eye-opening experience for me, because suddenly the terms I had only passing acquaintance with became very real, very useful, very meaningful ways to help your child. “Functional analysis” sounds complicated and technical. It’s not. It’s really just thinking deeply and rationally about what your child is getting out of a certain behavior, and keeping notes on what you’re discovering. It isn’t overwhelming—although the resulting epiphany can be nothing short of mind-blowing. (“You mean telling him he has to leave the dinner table is actually encouraging his bad behavior at meals?”)

  Both Dr. Koegel and I feel very strongly that we want everything in this book to be crystal clear to the layperson as well as the educator. So we’re
making sure we explain fully any terms we use repeatedly throughout the book.

  DR. KOEGEL

  A couple of years ago, I appeared on the ABC hit show Supernanny, which was seen by millions of viewers around the world. The show focuses on decreasing problem behaviors in typical children. The most common technique used on the show is the time-out.

  The producers had invited me to work with a child with autism on the show. They picked a three-year-old boy from Florida who didn’t say any consistent words and loved to spin in circles. He could entertain himself for hours on end and didn’t seek his parents’ attention the way a child without autism would. The producers were taken aback when I told them that their tried-and-true time-out approach to altering behavior wasn’t going to work with this kid and that we would have to approach him in a different way—which I subsequently did successfully.

  Time-outs work amazingly well with typical kids. You know the drill: the child misbehaves and has to sit alone in his room or in the corner of a room until he’s ready to behave. Time-outs are very effective for most children—so effective that when used properly (with praise for good behavior), most kids don’t need any other type of program.

  Unfortunately, when you’re dealing with a kid on the spectrum, a time-out may be the greatest reward you could give her. Remember, one of the criteria for a diagnosis of autism is that the child has to have trouble with socialization—kids with autism don’t seek to share enjoyment with others, they don’t develop great peer relationships, and they don’t often engage in the reciprocal emotional interactions that we see in typical children. So it’s no wonder time-outs don’t work for our kids—they don’t mind being alone! In fact, they usually like it. After all, it beats having to engage in some classroom assignment that isn’t interesting or in some demanding social interaction that’s like speaking a foreign language. (Of course, there are some kids with autism who thrive on social attention and for whom time-outs might work, but they’re definitely in the minority.)