Growing Up on the Spectrum

by Lynn Kern Koegel

  If your child would respond to a checklist, that would probably be the least intrusive way to help in this situation. If you don’t think she’ll follow the checklist, you may want to have a counselor help out. And if she has friends who really care about her, and won’t make fun of her, asking them is also a good option—but only if both those conditions are true. One last thought: one parent I knew packed an outfit in separate baggies labeled for each day, and this ensured that her son changed his clothes and matched each day of his field trip.

  My son screams when I try to run a comb through his hair. He claims it really hurts. Do you think it’s possible his scalp is really that sensitive? I keep having to send him to school with it looking like a bird made a nest in there. I’m tempted to buzz it, but I’m worried that it will just make him stand out more. Any other solutions?

  It may really hurt. If it is a bird’s nest, it is likely that it does really hurt when you comb it. Choices always work better than force. Don’t ask your son if he wants his hair combed—combing has to get done—but do ask him if he wants to comb his hair himself or if he wants you to comb it (spray on a little detangler first!). If you can teach him to comb it himself, he’ll be able to stop when it starts hurting—and it’s also a good lesson in creating independence.

  My daughter showers fairly regularly, but I’m not convinced she’s doing a good job: she often has dried shampoo flakes in her hair, soap scum in her ears, and her face never looks any cleaner when she comes out. I can’t exactly climb into the shower with her—she would never let me. Any advice for getting the shower to do what it’s supposed to?

  It may be easier to target one thing at a time and apply some rules to help her remember. You can suggest a certain number to count to while she’s rinsing, or teach her how to feel her hair so that she can learn how it feels when the soap is washed out. Targeting one step at time may make it easier for both of you and lead to more rewards for a job accomplished successfully than if you try to work on everything at once.

  3. Managing Behavior

  My daughter has always fallen apart when frustrated—sometimes she gets weepy, sometimes furious. When she was little, we tried to ignore it, but now that she’s older, it’s almost impossible to ignore: she’s five foot seven and weighs 140 pounds! Just yesterday, she was having trouble finishing her math homework and threw the book across the room and broke something. The worst is that her teachers have said she gets upset at school when the work is too hard for her and the kids are all noticing her meltdowns. How can I teach her to control herself in public, if not in private?

  CLAIRE

  I knew a babysitter once who worked with a little girl who was on the spectrum and who would fall apart, screaming and flailing, whenever she wasn’t allowed to do whatever she wanted (like linger forever at a favorite spot). There was no behavioral program in place at home to help her learn to control these behaviors, and the babysitter had no training in working with kids on the spectrum. For a few years, she struggled to keep the girl safe by restraining her physically when necessary, but as time passed, her charge grew bigger and bigger until she was bigger than her babysitter. At that point, the babysitter simply wasn’t strong enough to restrain her anymore and was so wracked with anxiety that the girl might hurt herself, the babysitter, a member of her family—or an innocent bystander—that she found another job. It grieved her to abandon someone she cared about, but without the proper interventions being put in place by the family, she just didn’t have the resources to solve the problem all by herself.

  If kids aren’t taught to control their own behavior when they’re young, they’ll still be out of control when they’re older. And how do you deal with a 170-pound adult who’s physically aggressive? The consequences are likely to be truly tragic.

  DR. KOEGEL

  Big kids have the same issues as little kids. If they want something—or want to get out of something—they’re probably going to find a way to let you know. If throwing a tantrum or being aggressive works—and it usually does with big kids—they’ll keep on doing it. I’ve had a number of adolescents and adults throw huge tantrums and aggress. And when they’re big, their physical aggression can really do damage.

  We had one young adult, who was almost six feet tall, run down the middle of a busy street because his interventionist wouldn’t let him buy something he wanted at the store. Another man threw such a fit in a store because he couldn’t buy candy that the owner called the police, who handcuffed him and hauled him off.

  Clearly it’s important to get control of these behaviors. If you’re dealing with out-of-control behaviors, you’re going to have to do a functional analysis and figure out the function of the problem behavior, then teach a replacement behavior.

  For example, if your older or adult child is throwing fits because he isn’t getting something immediately, you will have to teach him to tolerate a delay. Right before you give him something, say “Just a minute” or “Hold on for a second” and wait that moment before giving it to him. Start with a very small increment of time and then work up so he learns that if he doesn’t get something immediately, he will get it eventually.

  If your adult child is noncompliant a lot of the time and rarely follows directions, you may want to start with rewarding her for following any directions—even those that lead to a desired goal for her. For example, we worked with an adolescent boy who broke items in his home and aggressed toward his mother every time she asked him to do something he didn’t want to do. So we had her ask him to do desired things, such as turn on the TV or put the dessert on the table, and then say “Thank you for listening.” Eventually, he got used to her giving him instructions, and he didn’t associate them with anything negative. It also empowered her to feel that he really could comply with some of her instructions. At that point, we started interspersing, very gradually, instructions that were about less desired activities.

  There are many other ways to work with problem behaviors, and if your adolescent or adult is engaging in them, please seek assistance from a qualified and skillful person. Aggression that has been going on a long time usually takes a long time to get rid of. But you need to get rid of it. It can seriously keep your child from enjoying many community activities and can stand in the way of his social and worldly success if it isn’t curtailed.

  Other behaviors may arise with this age group that weren’t as much of an issue when your child was little. Read on.

  Distinguishing Between Public and Private Behaviors

  People don’t freak out if a little kid takes his pants off in public or takes a leak because he couldn’t wait or sticks his hand down his pants—they may not approve, but they’re not going to call the cops either. The parents can simply tell the child to stop and then explain that it’s not okay and he mustn’t do it in the future. I remember once when I was driving on the freeway, cars started honking and people were pointing at us. I looked in my rearview mirror and saw that my toddler had climbed out of her car seat, completely taken off her clothes, and was peacefully sunbathing on the back window ledge of the car. We still get a chuckle out of that story, but just think about what would happen if an adult did that—someone who didn’t fully understand it wasn’t appropriate.

  Adults and adolescents on the spectrum may have trouble understanding which behaviors may only be done in private and which ones are OK in public. If your child is doing things in public that are unacceptable, you need to step in immediately and make it clear he can’t do such things there. If your child is too shy to ask for a restroom and is urinating in public, take the time to teach him how to ask someone where the restroom is and make sure he knows he needs to ask that question before the need grows too dire. Or put him on a schedule so he uses the restroom regularly, before he gets to the point of having to go in public.

  Masturbation is another private behavior that needs to be curbed in public; for more on that, see Section III, Chapter 3 on sexuality.

  Improving Behavior
by Teaching Independence

  There comes a time when, whether we like it or not, our kids become independent. The human drive toward independence becomes clear during a child’s second year of life, when she can get around and go after objects on her own, firmly (and frequently) declare “No,” throw a tantrum when things aren’t going exactly as she would like, and use some combination of words or actions that translate to “I can do it by myself.”

  As the years go by, our kids keep getting more independent, doing more and more things for themselves that we used to do for them (like feeding, bathing, transporting them, and so on), until we sit back and ask ourselves when we’re sending them off to college or to live on their own, “What happened to that helpless infant?”

  But kids on the spectrum usually need additional help and monitoring to reach that desired (and, for the parents, bittersweet) independence. Just recently I was on a trip to Cape Cod and something about a particular family there caught my eye (and I’m sure the eyes of others too): an adult with autism was holding hands in public places with her mother. My sister (who is also in the field of disabilities) and I were talking about how no one would have guessed that the adult had autism if it hadn’t been for the mom’s holding hands. In that case, the mother needed to be aware that as lovely as it might have been to be holding hands with her daughter, it wasn’t socially appropriate and made her child look different from the other young adults. She needed to gently insist that her daughter walk independently, which is a fitting metaphor for what we all need to do for our kids.

  Here are some ways to encourage a healthy kind of independence in your child, without pushing him too quickly into areas he’s not yet comfortable with:

  Teach Self-Reliance

  One of my close friends, whose daughter is diagnosed with Asperger’s, told me that he had the most challenging time getting her up and out of the house in the mornings, but when he bought her an alarm clock (which she got to choose herself), she started bugging him to get up and out of the house! Teenagers want and need to feel that they can take care of things by themselves, so help them to feel good about themselves by finding positive ways to let them be independent.

  One way to encourage growth toward independence is for you to give your child jobs that will help him learn to be responsible, such as walking to the corner market for an ingredient for dinner, helping to plan the family vacation, carrying luggage or grocery bags, or anything else that makes him feel valued, important, and as if you’re treating him like an adult. You’ll be amazed at how much help your child really can be—and that gives you another opportunity for praise (we’re always looking for those!).

  It’s vital to develop a sense of responsibility in your child, whatever her level—it will keep her from engaging in undesired behaviors and help her develop independence. Obviously, you don’t want to load your child with responsibilities that are too much for her—you want her to be successful with whatever she takes on. So tailor the responsibilities to the child and increase them as she grows and proves her ability to rise to the occasion. Do this gradually, making sure your child is safe and is making the right judgments when she’s on her own.

  CLAIRE

  Okay, here’s the part where I brag about my son. (Again.) If we’re running errands, he grabs the bags from me and carries them the whole time. If we’re on a trip, he’ll take charge of the heaviest bags and pull every suitcase off the baggage carousel in the airport, then load them up on the cart and push the cart for us. If I fall and hurt myself, he races for ice or whatever else I might need. And his father calls on him regularly to help bring up the trash cans and assist him in any strenuous tasks around the house.

  Andrew loves that when we ask him to help out, we’re appealing to him adult to adult. The very fact that we’re more likely to ask him to do something onerous than his younger siblings makes him want to say yes. He gets that these increased responsibilities reflect his greater maturity and that our reliance on him goes hand in hand with our acknowledgment that he’s no longer a little kid, that he’s as dependable and hardworking as any adult. And we make sure he gets that message by emphasizing it every time, telling him that the job requires an adult and then thanking him effusively once he’s done it. As my motherin-law once said, “It’s nice to be thanked.”

  DR. KOEGEL

  Use a Chore Chart

  When he was in middle school, Evan couldn’t cook, couldn’t clean, and basically didn’t help with any of the family chores. So we developed a chore chart for him (see below for how to do this). We began with just one chore (feeding the dog), and gradually added on more and more of them. He had to start his chores before dinner, and his last chore of the day was setting the table, which worked nicely into the natural reward of a great meal.

  Chore charts can be accomplished for children of any level. Simply draw up a little grid with the chores on one side and the days of the week up above so she can check them off daily. If your child has difficulty reading words, you can use pictures to prompt her to do her chores. If you want, you can have her check off the chores as she finishes them, or you can put them on Velcro strips and she can pull them off and put them in an envelope when she’s finished. Regardless of the number of supports you provide, taking care of the chores and checking them off teach your child to be responsible.

  Driving

  Every teenager wants to drive, but at the same time, having a teen who drives is really stressful for parents. My own kids and most of my friends’ kids have had a fender bender or two during the first year of driving.

  Interestingly, very few of the kids I know who are on the spectrum have had accidents. Perhaps they’re more careful, perhaps they follow the rules better, or maybe they’re just lucky. Here’s some advice for you when you’re ready to bite that bullet and encourage your child to begin driving:

  • Start the whole process later. If it isn’t absolutely necessary for your child to start driving at sixteen, wait a few years. This will give him a chance to mature a bit before getting a license. But if he’s dying to drive, and having a car will help him socially, then go for it.

  • More driver’s training. Kids today have to take driving lessons privately, and they’re expensive. If you can afford a few extra classes, it’s well worth the investment. Good driving is partly a matter of practice, and it’s a lot less stressful to get the practice from a professional than from Mom or Dad.

  • Make specific, clear rules to help with problem areas. One thing I have done is have the parents figure out problem areas, then establish some rules to keep their kids safe. For example, we work with a twenty-two-year-old who changes lanes without looking over his shoulder. He has had a number of close calls, so we made a no-lane-switching rule. He has to drive in the slow lane no matter what. While he hates it when he’s behind a slow car, he just has to live with it if he wants driving privileges.

  • Start close to home. You don’t need to send your child off on the freeway or highway as soon as she gets her license. Start with short local drives to the store or other neighborhood locations, then gradually work up to longer drives.

  • Follow your child. If your child has only driven with an adult, you may want to follow behind him in another car the first few times he drives alone. If anything looks risky, you can toot your horn.

  And remember, praise your child for good driving. It’s a huge accomplishment and will provide her with another step toward independence.

  CLAIRE

  Man, I hate driving. I have four kids and live in LA, so I don’t have a choice in the matter, but I’ve always said that if we were rich enough, I’d just hire a full-time driver and never have to drop off a kid at a playdate or pick one up from an afterschool activity again. Because Andrew has always had friends who live fairly far away and has grown tired of trying to make plans with a mother who groans every time he asks her to get him across town (“In Friday afternoon traffic? You’ve got to be kidding me!”), he was pretty eager to get his
driver’s license as early as possible.

  Now, having watched my son play team sports, I had some concerns about his ability to respond quickly to unexpected movements, so the idea of putting him behind the wheel of a very fast, very heavy machine was nerve-racking. On the other hand, I was just as eager as he was to see him getting himself around town. I remembered that at an autism conference I went to with Dr. Koegel, one mother of a young adult had reminisced about how her son had learned to drive: “I just sent him off with a driving instructor and basically said, ‘Bring him back when he’s a good driver.’ It cost a fortune, but it was worth it.” It was the kind of thing that sticks in your head when your kid is about to be that age.

  It does cost a lot to hire a good driving instructor. We asked for recommendations from friends who had older kids on the spectrum and when one family highly recommended someone, Rob got in touch with that instructor. His hourly fees were staggering. But … what was more important than making Andrew a lifelong safe driver? Not much.

  Our driving instructor, Robert, told us a lot of very smart, insightful things about teaching kids who are on the spectrum. He said that, in his experience, they took longer than typical kids to master the skills they needed to be good drivers. They also needed extra hours on the road because they had trouble generalizing from one experience to another, so it was important to expose them to as many different driving scenarios as possible while they still had an instructor to talk them through it.

  The example he gave me was that while he could teach a student on the spectrum what to do when a car had broken down and was blocking a lane, that same student would be completely thrown if, say, a tree had fallen and was blocking a lane. She wouldn’t necessarily generalize from the first situation to the second because she would read them as completely different scenarios—even though the driving tactics would be the same. So Robert said we should make sure Andrew had as many hours on the road as we could possibly arrange, first just with him, and later, once Andrew was comfortable behind the wheel, with other instructors and with us.