Growing Up on the Spectrum

by Lynn Kern Koegel

  CLAIRE

  Ah, sex. The source of so much agony and uncertainty when you’re a teenager.

  I’m not going to tell any cute little family stories here. There are limits. But I will say this: for whatever reason, I’m fairly comfortable talking to all my kids about sex and I think that’s a good thing. No matter who your child is or what issues he’s struggling with, it’s got to help him to have a parent who can speak comfortably and calmly about the realities of sexuality and who can listen to any questions or concerns without overreacting. Studies have shown that the more sex is discussed openly in the household, the later kids are likely to have sex. The same is true for sex education—the simple fact is that the more knowledge your child has about sex, the longer he’s probably going to wait to have it. And I think we parents can all agree that’s a good thing.

  All of my kids—even the littlest ones who find the idea of sexual intercourse absolutely repulsive (as one does before puberty)—have been told repeatedly that sex is a wonderful but serious act that should take place only between two people who love each other, that masturbation is normal but must be done privately, and that you should always use a condom when you have sex. I’m willing to answer any other questions they might have, but I absolutely insist on their knowing those three things, even if it means I have to bring the topic up now and then. (After I took my older kids to see the movie Juno, I immediately launched into my “This is why you should never have sex without a condom” speech, and one of my teenage boys moaned, “Why does everything have to have a moral with you? Can’t we just enjoy it as a movie?”)

  Kids on the spectrum, who are rule followers and absorb things best when they’re boiled down to their simplest elements, need you to be honest and direct with them about sex. Kids who aren’t on the spectrum need you to be honest and direct with them about sex.

  Now on to Dr. Koegel, who’s going to be honest and direct with you about sex.

  DR. KOEGEL

  The bodies of individuals on the spectrum work the same way that everyone else’s does. I had a dad tell me one time that his adolescent son with autism came home from middle school one day extremely upset because he’d had an erection at school. The dad replied, “Haven’t you noticed how middle school boys always carry their books in front of themselves? That’s because that happens to all of them!”

  One of the challenges with individuals on the spectrum is that because they have social difficulties, they may not learn about sex the way their peers do. Most of the males haven’t talked with the guys in the “locker room,” and the girls haven’t been included in the group gossip about boys. The kids may not have asked their parents about sex, and their parents may have not brought it up, assuming their kid wasn’t ready to talk about it. And to make matters worse, the kids may not have dated as often as their peers—or at all—so they haven’t had a chance to learn anything firsthand. Odds are good they’re just way behind in every sexual arena.

  But as Claire mentioned, it’s best to address the subject before it comes up as an issue or problem. And if you don’t feel comfortable talking about it, get someone else to help. We don’t want the only thing our kids know about sex to have come from the small amount of sex education they’ve had in school. It just isn’t enough.

  Unfortunately, there’s been almost no research done on sex and autism spectrum disorders. As far as we can tell from reports, only a subgroup is likely to marry. On an even more worrisome level, a higher percentage of individuals with disabilities (higher than those in the typical population) are arrested and incarcerated for sex crimes. Sadly, it seems that many of the arrests stem from our kids’ lack of social awareness about what is and isn’t appropriate and not from any malicious intent. For example, some of our adults have been accused of “stalking” girls they were interested in. One parent reported that her son was beaten up at the beach because he kept staring openly at another guy’s bikini-clad girlfriend, completely oblivious to how offensive that was. Another parent called me because his son had been arrested for downloading kiddie porn even though he didn’t realize that it was inappropriate (see Section VI, Chapter 4 on managing technology in your household). Claire and I were on a talk show once and a parent called up complaining that her son with autism had unintentionally touched a girl inappropriately, and the girl’s family had filed charges against him. Kids on the spectrum rarely mean harm, but they often just don’t understand where to draw the line.

  As our interventions improve and kids on the spectrum become more and more included and more and more successful academically, the challenge will be to fill in the social gaps, so that they can pursue and enjoy relationships and sex as much as their typical peers—and without risk of offending someone or violating any laws.

  Puberty

  As we said before, every parent dreads the teenage years, and having been through them twice (and survived both times!), I’m happy to tell you that they’re not all that bad. Yes, kids do become a bit more difficult to handle—when they’re little, they’ll usually change their behavior if you correct them, but during adolescence, whatever their peers think is far more important than what their parents think. They’re trying to fit in and they’re trying to spread their wings. And they should be. If they listened to everything we said, they would be playing our music, wearing our styles, and talking as we do—which just isn’t normal for an adolescent. Whether we like it or not, our kids do need to shift from spending the bulk of their free time with their parents to spending it with their peers. Again, this will lead to healthy friendships and healthy romantic relationships.

  Around (or shortly after) children celebrate their ninth (for girls) or tenth (for boys) birthday, they’ll experience an increase in their hormone levels, which will eventually increase their libidos. Something important to remember is that puberty doesn’t happen overnight. It is gradual—over a period of many years—which is great news for parents, because it isn’t as if one day they’re raising little kids and the next day they’re parenting wild, raging, out-of-control creatures who don’t want to have a thing to do with them. But it is an awkward time for kids, physically and emotionally.

  This whole puberty process starts with girls’ developing breasts and boys’ experiencing testicular enlargement, and with both sexes’ growing pubic hair. While this doesn’t seem like such a big deal, every adult remembers the conversations about size back at that stage—the girls talk about who has the large breasts and the guys talk about who’s “endowed.” And since middle and high schools have made a point of encouraging group showers after phys ed classes, none of this is a secret.

  Shortly after puberty begins, boys will start growing facial hair and their voices will change. And girls will start their periods, which makes a few days every month completely uncomfortable and unpleasant. Then to make matters worse, nature throws perspiration and body odor upon them, along with acne for some, and boys experience all of those also, in addition to wet dreams and (very embarrassing) spontaneous erections.

  And whom do they have to talk with about all this? You might think you could send them to your family doctor, whom they have known for many years and should feel comfortable talking with about anything having to do with the body. But guess what. Research shows that almost all medical doctors do not feel comfortable discussing sexuality issues. Further, most medical schools give no training in the area of sexuality. So here we are, a society that’s obsessed with sex (books, the media, movies, TV, gossip magazines, advertising, and so on), but we’re almost incapable of having a frank, open talk about it.

  Fortunately, you can help your child by being open and honest when it comes to discussing puberty, relationships, and sex. While kids on the spectrum will have the same physiological changes as typical kids, their difficulties with communication and socialization may result in their not completely understanding normal body changes. If your child doesn’t hang out often with friends, he may not have talked with them about the birds and the be
es, and if he finds communication challenging, he may not have fully understood the elementary school lectures. So if you think your child may need some extra support in this area, here are some suggestions:

  Talk About It Before It Happens

  If your child hasn’t been as socially active as his peers, he may not have been included in the general changes-of-life discussions they’re all having, so he may not have much information and will need you to start from the basics.

  If she has challenges with communication, she’ll probably need you to simplify things. I had a dad tell me recently that his daughter had attended some sex education classes at her school, and after a big meal she announced to her father that she had a baby in her tummy. The dad tried to explain that she was just full from the large meal, but she insisted that her stomach was growing so she must have a baby in it! If the sex education class is going to be over your child’s head, you need to take the time to discuss it with her in a way that she can understand.

  You need to start early so you can prepare your child before he or she gets unnecessarily alarmed over perfectly natural body changes. Tell her that she will find blood in her underpants and what she should do about it, whether it is going to the nurse, calling home, or opening up her personal hygiene kit. Give her this information before her first period starts. Similarly, tell your son not to worry if he has a wet dream. Assure him he can just pull off the sheets and throw them in the laundry or let them dry and no one will notice (well, tell him that). Let your kid know that these changes are natural—that periods happened to you when you were her age (and probably still do)—and explain what to expect long before anything happens.

  Continue to have ongoing conversations about the subject. Your child will have many questions, and if you only have one formal “sex talk” with him—the kind where you sit down, say a few things, ask if he has any questions, and then it’s over—he won’t feel comfortable about discussing things regularly as they come up. Always keep the lines of communication open and answer any questions honestly and openly, so your child feels comfortable about asking you questions anytime something comes up.

  I remember one of my daughter’s friends asking me intimate details about sex. Apparently, her mother hadn’t talked with her about sex in the detail she desired, and this poor kid had no idea about what was happening with her body. I was really worried that her mother would be upset that I answered openly and honestly, but I never got the dreaded phone call.

  Breast Development

  The days of bra burning are over. And that’s sad. Not only because of the statement it made, but also because bras can be really uncomfortable. But these days, to fit in, girls have to start wearing a bra as soon as they have something noticeable.

  If your daughter is starting to develop, take her shopping and let her try on a variety of different bras. Then make sure putting it on gets into her routine, just like putting on any other piece of clothing. If she needs a self-management chart or a checklist, make sure to add the bra, until putting it on becomes a habit.

  Body Odor

  A friend told me a funny story recently. She said that after her daughter had participated in a school health education class, she came home and announced that she needed to use deodorant, despite the fact that she hadn’t hit puberty yet and had no more body odor than a toddler! But the school nurse had said girls her age needed to start using it, so my friend went ahead and got her some. I recently caught my own daughter lifting up her arm and smelling the pit after a trip to the gym. Once they hit puberty, most kids become aware of needing to put on deodorant on a regular basis, but for kids on the spectrum, it might not click in as naturally as it does for others. If your child doesn’t seem to notice that she needs to check those things, you’ll need to teach her. Remind her to smell her clothes before she puts them away to see if they need laundering—even if they look clean. Make sure she puts on deodorant every morning. And if she forgets, get it into her routine or start a self-management program. Also make sure she knows that after a physical activity, a stressful class or meeting, or when the weather is warmer, she’ll need to check more often.

  Nutrition and Vitamins

  Kids on the spectrum often have poor diets, and this can delay the onset of puberty. Furthermore, some types of nutritional and vitamin deficiencies can cause increased discomfort during puberty, like menstrual cramping. You can lessen the negative physical effects of puberty by making sure your child eats a healthy diet and gets the right vitamins.

  Exercise

  We have long been proponents of physical exercise. The benefits can’t be understated. We have published several articles showing that vigorous physical exercise can be immensely helpful in improving schoolwork and lowering repetitive behaviors in kids on the spectrum. Physical exercise can also be helpful in reducing menstrual cramps, and for both sexes it can have positive psychological effects during puberty, not to mention provide the opportunities to meet and interact with peers. A lot of gyms are opening up specifically for teenagers these days.

  Finally, regular exercise will help with weight, and kids’ weight does fluctuate during puberty. Some picky eaters gain weight during adolescence if they gravitate toward carbs, and others gain when they aren’t participating in physical activities as often as they should. So do your child a favor and get him on a sports team, in exercise classes, or enrolled in a gym during adolescence and beyond.

  Shaving

  If your child isn’t as socially aware as his peers, he may not think about hygiene and looking good as often as you would like. And the changes that puberty brings do necessitate new grooming skills. Hair starts growing where it hasn’t grown before. For boys, it’s on their faces (nothing looks worse than those little unshaven straggly mustaches some boys have during puberty), and for girls, hair starts growing in lots of socially unacceptable places (well, unacceptable in our society—in Europe, she can probably get away with hairy arm-pits).

  Your daughter needs to learn to shave her underarms (the hair there can harbor bacteria and lead to body odor) and her legs. If you find she just isn’t remembering to shave, start a self-management program. Shaving needs to be a regular part of her routine, and for boys, the same is true for shaving their faces.

  Resting

  Many kids on the spectrum have sleep problems. Parents report that their kids wake up in the middle of the night, and even if they aren’t demanding attention, can be heard moving around for hours. This sleep disturbance may not correct itself in adolescence. One parent woke up in the middle of the night to find her nonverbal adolescent son’s bed empty. After an unsuccessful search throughout the house, she called the police. A few hours later, they found her son several miles from his home. He had crossed half a dozen very busy intersections and found his way to a music store. While his mother admitted that going to the music store was an age-appropriate activity and he couldn’t express his desire to go there to her, his leaving home in the middle of the night was a completely and utterly terrifying experience for her.

  Your child needs an adequate amount of rest for proper functioning—with sleep she’ll not only function better, but feel better—and that will affect you too. If your child isn’t getting enough sleep due to pubertal changes like wet dreams, menstrual periods, or any other reason, here are some suggestions:

  • Make sure he stays awake during the day. Many kids catnap during the day. In fact, I visited one high schooler who slept through all his boring classes (we’ve all been tempted to do that), and woke up bright and cheery for his interesting classes. You may have to enlist the school’s help if this is happening.

  • Make sure she gets enough exercise during the day. Exercise sometimes helps with nighttime sleep. When we were doing our research on physical exercise, we found that many school programs do not require kids in special education to participate in regular physical education programs. To make matters worse, many kids on the spectrum are either excluded from or, for some other reason, d
on’t participate in team sports. Finally, many may not be included in spontaneous pickup games. So you may have to work a little bit to get physical activities set up for your child—at school, after school, and over the weekend.

  • Have a routine. Every parenting book has a section about getting your toddler to sleep at night and most suggest a routine: for example, bath, then bedtime story, then kisses, then tuck in and lights off. Many adolescents and adults benefit from a routine too. You’ve heard people say not to read in bed every night or you’ll get sleepy when you read at other times. This is because you can become conditioned to feel sleepy. Try to find a routine that helps your child get to sleep at bedtime or when he’s experiencing middle-of-the-night insomnia, but make sure it’s the same routine night after night. For an adolescent, this may involve getting into pajamas, brushing his teeth, washing his face, reading a chapter in his favorite book, then listening to some quiet music. Whatever routine you want to develop for your child is fine—the main point is making sure it’s relaxing and that it happens at the same time each night, so he gets drowsy and falls off to sleep shortly afterward.

  • Watch the diet. Make sure your child isn’t having caffeinated beverages or lots of chocolate right before bed. And if she’s getting up in the night to go to the bathroom, have her cut back on her liquid intake before bed.

  Triggers

  One area of research has focused on adolescents and young adults who seem to be doing just fine for many days in a row, then (seemingly) all of sudden one day exhibit disruptive behavior. It doesn’t seem to be related to anything that’s happening then and there, such as problems at school, work, or family routines. We’ve discovered that some things that happen rarely and infrequently may trigger a problem behavior.