Growing Up on the Spectrum

by Lynn Kern Koegel

  Early in my career, when autism was rare, I almost never saw families with more than one child with autism. In fact, when people asked me if they should have another child, I almost always said it was very unlikely that they would have another child with autism. I don’t say that anymore. Now that there are more kids being born with autism, we are seeing more within the same families. And we do know that genetics plays a role in autism, because if one identical twin has autism, the other one is almost always on the spectrum as well. In fact, in the last decade I have seen triplets, two girls and a boy—all with autism; four siblings—all with autism; and a number of other families who have more than one child with a disability (although not all had autism). The studies vary somewhat, so it’s hard to put an exact number on the likelihood of having more than one child with autism in the family, but the odds are higher of having another child on the spectrum if you already have one child with autism.

  That brings us to the likelihood of having a child with autism if one or both parents have autism. We do know a few things. There seems to be a possibility that some environmental components may be linked to autism. For example, there have been a few publications suggesting that older parents may be more likely to have a child with autism. And if your child is a late starter at dating, she may also be a late starter on the baby front. So that’s one possibility that may lead to an increase in incidence—not just because she’s on the spectrum but because of her age.

  But we need to keep in mind that one of the problems of interpreting these studies is that they don’t usually specify the degree of autism—it’s either a “yes, he has it” or “no, he doesn’t.” The participants are often grouped, so we don’t know if it’s more or less likely to happen in kids who require more support. Further, if a parent isn’t very social, his child may not be exposed to opportunities for socialization, and therefore may appear as though he has symptoms, but may just not have learned how to socialize.

  So the bottom line is that an adult with autism or Asperger’s seems to have a higher likelihood of having a child of his own on the spectrum. But these are just numbers and statistics. There really isn’t enough information yet to clearly determine just how likely it is.

  Kids of Kids on the Spectrum

  As we mentioned above, another thing to think about is that there really haven’t been many studies that look at different subtypes of autism when it comes to the genetic link. We know from experience that there are many “autisms,” and kids with this diagnosis can be as different as night and day. A child who shows no symptoms of autism by age five is different from a child who is still severely disabled as an adult, and they’re both different from the child who’s fine in every way except socially. The studies that have looked at family links usually lump everyone together and get a statistical probability out of the lump.

  So if your adult child decides to have children, it’s a good idea to get genetic counseling before the pregnancy and then, once the baby is born, to stay alert for any early signs of a disability and get intervention as soon as possible if there are any symptoms present.

  And if the parent isn’t that social but wants his child to be, he’ll need to make an extra effort to get her involved in afterschool activities, clubs, and other social networks outside of the home setting. By staying informed and active, the parents and grandparents can overcome any potential environmental factors.

  Frequently Asked Questions

  My daughter is dating a boy who seems like a nice young man. We’re thrilled—she’s had so many social difficulties over the years that it’s wonderful to see her successfully dating. My husband is worried, however, that the boy is going to pressure her sexually and it does seem unlikely that they won’t get into at least some heavy petting, given their age. I honestly don’t know what to tell her to do. When I was that age, I had a feel for how far I was willing to go and how to make sure things didn’t go any further. But she’s such an innocent—and so eager to please him—that she might let him do things she shouldn’t. I’d like to give her some clear-cut rules for how far she can go, but I’m not sure what those should be or how explicit I should get. Any advice?

  Open discussion is the best thing. She needs to understand that she shouldn’t rush into anything. If she’s an adult and doesn’t live at home, discussion is the best you can do, but if she’s a middle or high schooler, make sure she’s adequately supervised when she’s with this guy. It doesn’t make sense to leave adolescents alone for hours on end with no supervision—they’ll most likely dig up things to do, and at that age, some of the things will be sexual. You also need to stay on top of the supervision situation at the other child’s home—you may think you have things perfectly covered as far as supervision is concerned, only to find that the parents of your daughter’s boyfriend don’t supervise at all.

  Talk to her about what you feel are appropriate behaviors for her age and the values you would like her to have. If you feel that it’s OK for her to hold hands and kiss her boyfriend, let her know that’s all she should do. At this age the boyfriend may not last long if she isn’t willing to have sex, but she may also have a lot less heartbreak if she isn’t sexually active.

  My son is on the spectrum and even though he’s a young adult, he shows no interest in women. It occurred to me for the first time recently that he might be gay. It’s not something we’ve really talked about with him and in our efforts to simplify rules as much as possible, we’ve only talked about sex and appropriate touching between a man and a woman. Now I’m wondering if we’ve completely confused him. Any advice on where to go from here?

  Like typical kids, a percentage of kids on the spectrum will be more interested in same-sex relationships. This doesn’t change the fact that they need to understand that they shouldn’t be taken advantage of, that they need to protect themselves against STDs, that they shouldn’t rush into things, and so on—all of the important information you’d impart to any kid reaching this age. In other words, you’re already telling him the right things, but it wouldn’t hurt to say specifically that sometimes these things take place between two men or two women.

  Neither my husband nor I am comfortable talking about sex with our child. Is there another way we can help our child learn about sex without specifically having to discuss it?

  First, you’re not alone. Many people find it difficult to discuss sex with their children. Fortunately, there are many books you can purchase for your child that explain sex in a simple way and are tailored to his or her particular age. Also, if you have someone you trust, a relative or therapist, that person may also help with discussing sex and answering your child’s questions. Finally, since your school’s sex educators are trained in this area, they may be able to provide your child with a little extra help.

  SECTION IV

  Making School Successful

  1. Introduction

  School has always been the hardest area for our child—and for us. At home, I can watch over every aspect of his life, but when I send him off to school, I have to depend on other people to make sure he’s being taken care of and stimulated. I want him to like school and I want him to grow and learn. How do I get the most out of his schooling experience?

  CLAIRE

  I can (and later will) discuss at great length all the ways that school is hard for Andrew and other kids like him, but for a moment I’d like you all to consider how hard school is for the parents of kids on the spectrum. The kids have to learn to read; we have to learn to advocate. They figure out how to solve math problems; we have to figure out how to structure an IEP. They try to memorize history facts; we try to memorize the rights we’re entitled to under state law so we can demand a better education for them. They have to deal with the occasional unsympathetic teacher; we have to deal with frequently unsympathetic public school administrators who view the children we love as an extra burden they’d just as soon not have. They have to navigate the social jungles that are the lunchroom and play yard; we
have to …

  Actually, there’s nothing as hard as that. They win that one.

  The point is, if you’re a parent who’s fighting for your kid’s education, you’re working your ass off on a daily basis. You may feel frustrated, impotent, angry, and overwhelmed. But know that you’re not alone. And know that there are ways to approach the schools to make everything a lot better.

  DR. KOEGEL

  Being the first … being a pioneer … bringing new strategies to an outdated system … it’s fun, right? Not when it comes to educating a child with autism. It’s stressful, fatiguing, and humiliating for parents who want their children to get the best education possible but know that if they don’t, it could mean losing their child forever. It should be easy—the research clearly shows that kids who are included in regular education programs do better socially and academically. Researchers have shown that the typical students in classrooms that include kids with disabilities do better too. Research also shows that if kids on the spectrum get an intensive intervention program, they’re likely to have much better outcomes down the road. So getting your child what he needs from his school should be simple, shouldn’t it? But it isn’t. I still can’t believe how hard parents have to fight for the basics. I remember writing letters for Claire and Rob just so the school district wouldn’t reassign Andrew’s aide when he was doing so well. (Their actual school was very supportive—the change order had come from the central office, which knew nothing about the individuals involved.) And I’ve testified in many fair hearings—and not lost one yet—all pertaining to getting basic inclusive and social programs for kids on the spectrum.

  But it’s worth it. Children on the spectrum need to be fully included at any age; they need modifications to help them get through assignments; they need parents and staff to work together to provide a comprehensive and unified program across all of their waking hours; and they need to be in a school system that embraces them as part of the community—one that doesn’t just stick them in a different building, a different classroom, at a different lunch table, but welcomes and includes them as an integral part of the student body. It should be just that plain and simple.

  We said in our introduction that one of the tricky things about parenting kids in this age group is figuring out when to step in and when to step back. So we want to be clear about this: making sure your child’s school is working for him in all the right ways cannot and should not be left to chance. Don’t hesitate to meet with teachers, administrators, and staff to advocate for your child when it comes to his or her academic environment.

  2. Middle and High School: Supported Independence

  My son just graduated from elementary school and next fall he’ll be going to our much bigger local middle school. I’m worried that the transition will be too much for him: he’s going from a place where the kids have known him since kindergarten (and are therefore used to his quirks) to a place filled with strangers, most of whom will be older than he is. And back at elementary school, I was able to establish a real relationship with each year’s teacher and monitor his progress with her. But at middle school he’s going to have a different teacher for every subject and parents are simply not as involved. How do we navigate this strange new world?

  CLAIRE

  Things really changed when Andrew graduated from elementary school. For one thing, he had had a one-on-one aide up until then, the same one every year. We used to joke about how Dawn was his second mom because she took such good care of him in an unobtrusive way, always facilitating his social interactions with the other kids and making sure he understood what the teachers wanted from him. But now he was doing so well that we were sending him off to middle school without any special support. We had chosen a private middle school over our enormous, zoolike local public school, because it meant smaller classes and a more nurturing atmosphere—but it also meant no IEP, no special education staff, nothing but regular teachers and administrators who were going to expect him to keep up on his own.

  The biggest change for us was the transition from one classroom teacher to many teachers of different subjects. Each September in elementary school we would meet with his new teacher and go over Andrew’s academic strengths and weaknesses and let her know that we welcomed any communication throughout the year. Now that Andrew was going to have a half dozen or more teachers who would only see him about an hour a day, we knew we wouldn’t be able to make and maintain that same kind of connection.

  It’s been an interesting journey since then. Not every teacher in middle and high school has been the perfect match for Andrew, but I will say that all but one have offered unqualified and enthusiastic support. When he’s had a problem in class—and believe me, we’ve had quite a few of those over the year, ranging from awkward partnering situations to failed grades on tests—they’ve been willing to work with us to improve it, whether that meant dealing with it themselves at school or giving us the information we needed to help out at home.

  Socially, middle school was hard. Because it was a small school, the pool of boys was tiny and Andrew just didn’t find any soul mates in it. For the first year or so, he managed to stay socially afloat simply by being cheerful and a good listener, but by the end of his last year of middle school, things were deteriorating and he was starting to get picked on and teased. We were relieved when he graduated from eighth grade and could move on to a new school.

  We were fortunate to find a high school that doesn’t just talk about diversity—it truly embraces it. Andrew was welcomed for who he was right from the start and his friends are as quirky and offbeat as he is.

  Nothing’s perfect. There are still kids at school who tease him and make him uncomfortable. One ungracious teacher made his ninth grade year stressful, ignoring our requests for help in figuring out why Andrew was struggling in her class and never giving us the information (graded tests, future subjects, and so forth) we needed to help him at home. Several group projects have turned disastrous, with Andrew either doing too much of the work or not enough. Some girls told him and his best friend to call them and then deliberately and maliciously ignored their calls. And so on.

  It’s probably impossible to get through middle and high school without some discomfort, but Dr. Koegel’s advice can reduce it to a manageable amount.

  DR. KOEGEL

  You can ask pretty much anyone you know, and he or she will tell you that the years in middle school were not altogether a wonderful experience. Some may say it was a total nightmare and others might say it was a mixed bag, but rarely will anyone tell you that middle school was paradise. My own experience wasn’t something I’d like to repeat, even if I knew then what I know now. I was under five feet tall and looked as if I belonged in third grade, and the other kids at school had no reservations about regularly letting me know that I looked too young. Of course, now that I’ve been celebrating my twenty-ninth birthday for the last two decades, I would fully appreciate someone telling me how incredibly young I look. But context is everything, and back then looking young was embarrassing and humiliating.

  Actually, come to think of it, context is everything when dealing with kids during their middle and high school years. My friends would complain to me about how impossible their adolescent kids were with them at home, but they always seemed perfectly delightful to me. And I remember overhearing my adorable, sweet niece talking to friends on the phone and sounding like a refugee from an X-rated movie: every other word was bleepable. Most kids do have many different behaviors in their repertoires. They’re not rude and argumentative to everyone—their parents are usually the lucky recipients of those behaviors. That’s important: kids need to understand contextual appropriateness, and you’ll need to keep that in mind when helping your child socially. Kids pretty much learn, without any special intervention, how to act in specific situations, but kids on the spectrum may have difficulty with that, especially when it relates to peer socialization. While they may do just fine with adults, their adult-pleasing be
haviors may not win them any same-age friends. We’ll talk about how to deal with some of these issues in this chapter.

  As parents, we often think about ourselves when our kids are in middle and high school. We’re nostalgic about the days when our kids wanted to be with us over anyone else, willingly complied when we asked them to do something, and eagerly shared triumphs and tribulations with us at the end of each day. We were there to fix their pains, both psychological and physical. Now they’re less willing to share information with us and often totally disagree with our point of view. But we need to remember that as difficult as it is for us, it’s infinitely more difficult for them. Kids in middle school are trying to fit in, and this may mean doing things we wouldn’t have dreamed of, like dressing in outrageous outfits, drinking and taking drugs, and shutting out adults. What we have to remember is that our children are changing physically, mentally, socially, and emotionally.

  Mother Nature brings on a lot of those changes. Girls begin to develop and start their periods. That’s a big deal. They may be experiencing discomfort about their bodies and PMS. Boys are also hurtling into puberty, each of them on his own private time line, so the difference in size and development can vary hugely from one boy to the next.