Growing Up on the Spectrum

by Lynn Kern Koegel

  For example, PMS has been associated with behavior problems. Mom may ask for help with household chores or a teacher may give an assignment that would be fine any other day, but couple that with PMS and we may see behaviors we didn’t even know existed in our kids. A child who has communication challenges might not be able to clearly explain that she’s not feeling well that particular day. So if your child is having unusual outbursts, try to find out what “growing pains” might be triggers. If you have a daughter, you might want to lighten up a bit during that time of the month. Let her take more hot baths, use a heating pad, exercise a little more, and so on—anything that helps reduce PMS. If your son got turned down when he asked a girl out, give him a little more support. Let him know that you understand what he’s going through.

  Rules and Limits

  For some reason during adolescence, your rules are tighter and stricter than any of your kid’s friends’ parents. At least your kids think so. There probably are a few parents who have no rules for their kids and a few who are so strict it isn’t healthy. But in general, I found that most of the rules the parents of my kids’ friends had were pretty close to mine. So don’t give in to your kid’s complaints that you’re being unfair!

  Make sure your kid thoroughly understands your rules and their consequences. The very worst thing for a child is if you’re wishy-washy, don’t stick to consequences, and change your mind about your family rules and limits. I’m not saying that kids can’t earn more freedom. If your child always follows the rules, keeps up his grades, and is hanging out with an acceptable peer group, you can give him a little more freedom—and make sure to tell him that’s why. But continue to have a curfew and other rules, and make sure that you stick to them, even if your child tells you that he has to be home much earlier than any of his friends. Check with the other parents and agree on acceptable rules, whether it’s the dress code, curfew, or behavior at parties—it’s a lot easier if all of you have the same rules.

  The same goes for you and your spouse: stick together about rules. Kids will ask Mom if they think she’ll be softer, and Dad if they think he’ll give in. It will save you and your significant other a lot of heated arguments if you just say, “Let me check with Dad first,” then discuss it together when something doesn’t sound right. A united front is much easier than having your child divide and conquer.

  You Still Hold a Lot of the Cards

  Even though your child may be putting more emphasis on what her peers think at this age, remember that you are still her parent and you still hold the cards. If your child is behaving inappropriately, you need to think about consequences. If she’s being rude to you, you may need to think about not lending her the car that week. If she went on an inappropriate Web site, you may have to restrict her access to the Internet for a few days. Parents forget that older kids still need boundaries and rules, and if they follow them, great—you can lighten up a bit. But if they don’t, they still need consequences.

  On the other hand, if your child says something rude to you, don’t get into an argument with him and don’t try to one-up him—it will only make matters worse. Kids still need feedback on their behavior, and if you calmly say, “It hurts my feelings when you talk to me like that,” it’s going to go a lot further than turning it into a battle of wills.

  Every time you start to get frustrated with your child, stop and think. Remember how hard it was when that classmate teased you and how embarrassing it was when your tampon leaked through your clothing (or if you’re a dad, maybe it was getting an erection at the worst possible time) or how miserable you felt when you weren’t asked to the prom by that special boy? Multiply all those hardships and painful moments big-time for a kid on the spectrum. Everything is more challenging when it’s more difficult to read others’ emotions, and you’re being teased more often than the typical peers, and getting your ideas across is challenging. So remember to be the supportive parent he needs at this time.

  Find Special Times

  The last important thing to remember, which is especially crucial during adolescence when your child is gradually moving away from you toward her peers, is to plan special time together. If you and your child both enjoy going to the local coffee shop for a hot chocolate, keep doing that. If you have the same favorite TV program, keep watching it together. If you like going to the movies, plan to do that on a regular basis. Those special times, when you’re both relaxed and having fun, will be remembered forever.

  Summary

  Again, every parent has to deal with puberty, but if your child is on the spectrum, you may need to help him learn how to deal with the added hygiene responsibilities, society’s increasing expectations, and the stronger sexual feelings brought about by the gradually increasing hormones. Remember, even if your child seems socially immature, he’s having the same physiological changes as any child. A parent recently told me that she found her stepson looking through her lingerie—she felt that it was all part of his Asperger’s syndrome. Well, you know what? All young boys get curious about those kinds of things at that age. It’s a normal process of growing up and learning about sexuality. So keep the communication lines particularly open during this time.

  Keeping Sex Safe and Appropriate

  Again, there hasn’t been as much research or information on this subject as I’d like, but as we work with more adolescents and adults, we have learned about potential problem areas we need to address and some ways to improve sexual knowledge and skills.

  Inappropriate Touching

  I worked with one girl who loved to give hugs. The problem came during puberty. She still kept giving whole body hugs that, sweet as they were when she was tiny, rapidly became inappropriate for her age because she pressed her whole body against the other person. We had her practice giving more socially acceptable hugs—the kind where you stand back a little and put just one arm around the other person. By putting in the time to teach and practice the correct way of hugging, we were able to get her out of the bad habit and into a good one.

  We also have kids who have the opposite problem with giving hugs: they stay too stiff and aloof and seem uncomfortable. Appropriate hugging changes with age and familiarity, and getting it right takes practice. If your child resists your attempts to practice, enlist a teacher or therapist to help and give feedback.

  Other kinds of touching are even more complicated. When is it OK to touch another person? When is it offensive? If your child is delayed socially or hasn’t dated as much as his peers, you’ll need to talk with him very clearly about all that. If your child already has some difficulty understanding what is personal space, and when it is and isn’t appropriate to touch another person, you may want to deal with it before it becomes a real problem by working with him on it directly. Because he really doesn’t understand the rules, you don’t want to punish him, but you do want to make the rules clear for him. Just break things down so they’re easily understood, such as “Hugging is good for relatives and adult friends, but shake hands with new acquaintances and nod at friends.” If your child is visual, you may even want to draw some social circles or write a list and discuss appropriate touching for each social grouping.

  We’ve spoken with a few adults on the spectrum who say they always wait for other people to initiate intimacy, thus protecting themselves from doing anything inappropriate. Unfortunately, it also means they’re not learning much about reading their partners’ wishes. Adults need to get a sense of whether their physical attentions are welcome or not. One thing we’ve taught our adolescents is to drop in a question if they’re uncertain (and even if they aren’t). For example, if they’re giving a shoulder massage to their date, we tell them always to ask her, “How does that feel?” Even the kids who have trouble reading facial expressions and subtle cues can learn to ask the questions that will allow them to figure out what their partner does and doesn’t enjoy. (More on that later.)

  Stalking

  A subgroup of our kids become fixated on thing
s—they accumulate tons of information and become very focused on one topic. Unfortunately, we’ve had a handful of adolescents and young adults on the spectrum who became fixated on a particular romantic interest and began what many people would consider to be stalking that person: following her around the school grounds, sitting outside her dorm, repeatedly calling her even after being told not to do so, and so on. Although there’s never any harm intended, the objects of interest understandably freak out at the unwanted attention. We’ve found that it really helps to involve the person in other activities and meet new people to get his mind off that one particular individual. It’s important to recognize that the “stalker” wants a friend (or romantic interest) and so simply trying to make him stop following the object of interest won’t be nearly as effective as making other social opportunities available to him so he’ll feel less dependent on that one possibility.

  I was at a high school recently and one of the students with autism had been friends with another girl in her special education class. Unfortunately, the student decided that she didn’t want to be friends with our client anymore. Instead of redirecting the child on the spectrum to interact with other kids, the school staff let the situation escalate until she was following her former friend around constantly. Then their solution was to let the girl leave early from class so she couldn’t be followed! There was no attempt to address the main issue, which was our client’s desire to have a friend. The school provided no alternative or replacement behaviors whatsoever, so the girl on the spectrum felt she had no choice but to persist in trying to get this one former friend to hang out with her. It turned into a much bigger problem than it needed to because it wasn’t addressed correctly. In cases like this, it’s vital to work on social skills and increasing the child’s peer relationships, using the interventions we discuss in Section II.

  Modesty—or Lack Thereof

  The other day I visited the home of a middle school girl who was diagnosed with autism as a child but now does incredibly well in all areas. Unfortunately, while she interacts amazingly well with adults, she has very few friends her own age, so we continue to work with her in peer social areas. She was wearing a dress that day and while we were sitting around the table visiting, she tucked her knees up to her chest, apparently unaware that in that position everyone in the room could see her blood-stained underwear. Her mother noticed and quickly ushered her upstairs to change her clothes—but if her mother hadn’t been there, I doubt the girl would have realized what she was doing. Her carelessness about how she presents herself to the world may well be off-putting to her peers, especially when it comes to something as potentially embarrassing as this was.

  Kids on the spectrum can be oblivious to personal matters of modesty, and so you really have to be explicit and detailed in discussing this area with them. You can help out by purchasing clothes that naturally preserve modesty, like pants instead of dresses for a girl or longer shorts instead of shorter ones for a boy. If your child tends not to notice personal things like a leaky tampon (or an unzipped fly in the case of a boy), teach her to check for them on a regular schedule—but in private, not in front of other people! You can also teach your child certain routines, such as “Always check your fly before opening the bathroom door to leave” or “Every recess break, go to a restroom stall and check your tampon.” Getting personal hygiene into the daily routine often makes it easier to remember. (See Section VI, Chapter 2 for more tips on helping your child with personal hygiene.)

  Distinguishing Between Public and Private Acts

  I touched on this in the previous paragraphs. People on the spectrum sometimes don’t have the social awareness to realize that an activity that is appropriate in the privacy of their own room is simply unacceptable in public, including, of course, sexual activities, such as masturbation—and I have seen kids with autism masturbate in public. If your child is masturbating in public, make sure he understands that it is something that should only be done in private. Use a self-management program if the behavior is too entrenched to be changed easily. Self-management has been effective in reducing self-stimulatory behavior in public, and teaching your child to monitor periods of time without masturbation may solve this problem.

  For more on teaching your child to distinguish between appropriate public and private behaviors, please see Section VI, Chapter 3.

  Abuse Prevention

  There was a horrible situation in a nearby institution where a young, nonverbal woman with autism was raped by a male staff worker. This sexual abuse might never have been found out if the woman hadn’t become pregnant. For many years there had been rumors about abuse of the patients at this facility, which housed several hundred individuals with disabilities, and some of the patients had even run away, but it took the undeniable evidence of the pregnancy to finally close down the place. The staff worker is now incarcerated.

  Individuals with disabilities are often victims of abuse because they don’t always have the verbal abilities to report it, they might not understand when they are being taken advantage of, and people frequently don’t believe them when they do try to report it. When I worked in the public schools, one of the principals molested boys on the school grounds for many years before he was finally caught and arrested. Almost all of his victims were disabled children, many of whom had behavior problems, communication delays, and very bad family lives. Because of their personal histories, when they tried to relate what was going on, they weren’t believed, and it took years before the man was caught and sent to prison.

  In order to prevent abuse, individuals with disabilities need to be taught about personal boundaries in very clear, specific terms. You will need to be very precise about what’s OK and what isn’t and which people are acceptable to have relationships with. You should teach your child how to say no clearly and forcefully, and tell her to report anyone who’s doing anything that makes her uncomfortable. If your child isn’t able to verbally communicate, you need to frequently check on the people she lives, works, or goes to school with. If your child is in a residential setting, make sure that background checks are regularly occurring or at least are done thoroughly when people are first hired. And look for signs that something might be wrong—drop in unexpectedly as often as you can.

  Making Sexual Decisions

  If your child is engaged in an appropriate relationship, he’s going to need to make the right sexual decisions. If he’s sexually active, make sure he understands about sexually transmitted diseases and their prevention, about birth control options and the necessity of using one every time, and how to have a satisfying sexual relationship. Open and honest communication between two partners and education are the best ways to ensure a satisfying sexual relationship. There are courses and books on relationships, and encouraging your child to feel comfortable talking to you, a relative, a therapist, or another close friend may be the best way to help him in this area.

  One thing I’ve noticed from working with young adults on the spectrum is that they often have had significantly less sexual experience than other people their age. To help compensate for this inexperience, you may want to suggest that your child ask his partner if she’s being satisfied (if you’re comfortable doing so). You can practice this by suggesting your child give his partner a shoulder, foot, or hand massage and ask her how it feels as he’s doing so. Does she like it harder or softer? Is that a good pressure? Is she tense anywhere? Once he’s comfortable asking these questions, it’s easier for him to ask them when he’s being more intimate, and his partner will be more likely to volunteer this information if she’s used to expressing her feelings.

  Relationships, Marriage, and Kids

  To be perfectly honest, we don’t know much about intimate relationships, or marriage, or the family life of people on the spectrum. What we do know tends to be anecdotal: individual stories about people on the spectrum who are married and have kids. Without large data sets, we don’t have any actual statistics on how many people on the
spectrum have successful relationships, children, and so on.

  A few decades ago, Asperger’s wasn’t often diagnosed, so many of us have close friends who we know are on the spectrum but were never diagnosed. Some are dating, some have significant others, and many have kids. We also know that the large number of kids from the current autism uptick are close to hitting puberty, so we’ll have to deal with this issue a lot more in the future. And finally, we know that the interventions we have today—for social challenges, conversation improvement, and the inclusion of individuals on the spectrum—are better every year, so the futures of these kids become more optimistic with every passing day. We should have a lot more research and information at our fingertips in another decade or so. But for the moment, here are a few things I do know from my experience as a therapist:

  Fewer People on the Spectrum Than in the Typical Population Get Married

  Unfortunately, kids with social challenges who are not adequately treated (and this happens a lot) often have problems with socializing as adults. So it’s critical that they get support at all ages. As we discussed in the school sections, many, many kids don’t have adequate social programs during middle and high school. Some kids don’t have any type of social intervention in their natural settings. Having said that, I know many individuals on the spectrum who are happily married. Sometimes they marry a little later, but many do get married.

  Many High Schoolers and College Students Need Support in Initial Relationships

  While most kids start holding hands, kissing, and flirting as early as middle school, many of our high schoolers and college students have never had a date. So that means that they may not be able to read the romantic cues. They also might be a bit awkward, as anyone is on first dates. It’s important in these cases to find therapists who are trained to help them learn how to read social romantic cues, when to touch (or not touch) another person, how to strike up a conversation with someone they are interested in and how to take it to the next level. Learning how to satisfy a partner is important for any couple, but if your child has difficulty reading the social cues, he may have to be taught to ask more questions and be more open about his relationship with his significant other. We tell our adults that it’s okay to say, “Sometimes I have trouble picking up on other people’s feelings, and I just wanted to know if you enjoyed yourself last night?” It’s important to make that effort, because if the date simply assumes he’s being insensitive to her feelings, that is a certain relationship stopper.