Growing Up on the Spectrum

by Lynn Kern Koegel

  If you have an older child on the spectrum, and have survived and navigated the diagnosis, the early years, the IEPs, the bad teachers, the untrained aides, and experienced the good—your child’s accomplishments, the supportive teachers, the specialists who encouraged her, the friends and family who were there for you—you know that anything is possible. As we discussed earlier, each year the intervention gets better, and each year more individuals with autism are included in community, work, school, and recreational settings.

  But now that your child is grown up, we have other things to think about.

  The future needs to take into consideration all aspects of the person on the spectrum. Is he living in a physical facility and location he likes? Does he have friends? Does he have recreational activities? Does he live with people he enjoys? Does he have a job he gets pleasure from?

  If the answer to any of these questions is no, then we need to do more. I’m hopeful that the rest of this section will help you get to a place where the answer to many of these questions will ultimately be a resounding yes.

  As always, when it comes to being a parent of a kid on the spectrum, nothing is easy or taken for granted. But with some effort, you can help to ensure that your child is happy, fulfilled, taken care of, and comfortable with her life as an adult.

  2. Jobs

  I wouldn’t say that I skip to work every day, but I like what I do and I’m good at it. I want my daughter, who’s on the spectrum, to know what it’s like to feel fulfilled at the workplace, but I’m worried that her social issues and unusual mannerisms will make it hard for her to land an interesting job, ultimately forcing her into a more menial occupation. How can I help her find her way to a job she enjoys? Is that too much to ask?

  CLAIRE

  When Andrew was fifteen, he decided he should have a summer job. A few of his friends were earning their own money and he had an expensive enchilada and frappuccino habit that his allowance wasn’t up to. He expressed interest in working at a local restaurant (one which happened to make really good enchiladas—I’m sure he was picturing the fringe benefits) and when my husband first contacted them, they said they could use a part-time busboy and he should come in to interview.

  We made some mistakes with that interview. We did a little priming but probably not enough. Neither of us was available to drive Andrew there, so he rode the bus and arrived very early and very hot and sweaty. Not sure what to do with the extra time, he hovered anxiously in front of the restaurant, so he was a bit of a wreck by the time he went in for the interview. I don’t know exactly what went down, only that the interview was very short and ultimately unfruitful. Andrew didn’t seem very happy with the whole experience, and no one ever called him back from the restaurant.

  We realized we had to be less ambitious, start smaller, prepare more carefully. Fortunately, a much better opportunity presented itself. His best friend worked for a company run by close family friends—people who already had met Andrew socially. They said they could use another pair of hands in both their warehouse and the office. Although the job was pretty much guaranteed, we talked to Daren, Andrew’s incredibly nice employer-to-be, and we all agreed that it would be best for Andrew to go through the interview process.

  This time, we primed him thoroughly, going through all the potential questions we could think an employer might ask and letting him come up with the right answers. We insisted he dress nicely in a button-down shirt with khakis (he looked so handsome!) and I drove him to the appointment and walked him in.

  It was an amazing experience. Both Andrew and Daren took the interview very seriously, but it was all geared toward success this time. They talked for a long time, and Daren assured me afterward that Andrew had done a good job in the interview. He told Andrew he was hired.

  Andrew worked hard there all summer. Not only did he do a lot of different things at the office (and in their warehouse) but he had to get himself there and back by bus every day he worked, and if you’ve ever tried to use public transportation in LA, you know that couldn’t have been easy. Daren told me that Andrew was dedicated and hardworking and willing to try his hand at anything they needed him to do, and he must have done okay because they said he could come back and work there again this summer. And Andrew made enough money to buy himself a whole lot of enchiladas.

  Lately Andrew’s been thinking about his future career and, to my great delight, has moved from some fairly unrealistic dreams (theme park owner?) to something he can actually work toward. He loves playing around with flash animation and recently said to me that he hopes he can find a job working with it someday. We just signed him up for a college extension flash animation course to hone those skills. He doesn’t need to have a career picked out yet—few of us do at the age of sixteen—but the fact that he’s thinking seriously and realistically about the choices he makes toward that end fills me with optimism.

  DR. KOEGEL

  As researchers, we think in numbers. We carefully measure everything and remeasure over and over again to make sure our interventions are working. We’ve published articles about such things as using physical exercise, self-management, video modeling, and priming to reduce repetitive and other undesired behaviors. These programs work, but when we say “work” we often mean “help.” Physical exercise may cut repetitive behaviors in half, but if someone is going on a job interview and engages in, let’s say just five seconds of repetitive behavior, he probably won’t get the job. And then, on top of the repetitive behaviors, there may be some subtle social cues your child doesn’t pick up on, so job interviews—especially without some support—may be difficult for individuals on the spectrum.

  There are many many areas that are sorely subadequate for people on the spectrum and with other disabilities. One relates to jobs. While there are civil rights laws that prohibit discrimination against people with disabilities, check any survey and you’ll see that many kids on the spectrum are unemployed. This is an area that has begun to come to the attention of organizations dedicated to developing meaningful employment opportunities for individuals on the spectrum. But, to be direct, your child may need help finding and keeping meaningful employment.

  First you need to help your child find a job he loves and will want to get up for every day. Whether this is in the arts, writing, math, or whatever else really interests him, you need to help him make that type of job happen.

  People with disabilities are too often forced into employment training programs that don’t take into consideration their interests, strengths, or desires. Time after time, you’ll see high school classes herd a whole group of adolescents into a restaurant where they’ll set the tables, fill up the salt and pepper containers, mop the floor, and so on. This direction needs to change. Just as we wouldn’t want to be told what to do with our lives, we need to explore the wide variety of career opportunities for kids on the spectrum.

  Although we’re seeing more kids on the spectrum being included in preschool and elementary school, we still aren’t doing such a great job of including older kids on the spectrum in regular education classes, community homes, work settings, and recreational activities. In fact, I was in a high school recently where the children with special needs were picking up the trash during lunch for the other students. I couldn’t believe it—I still can’t believe it—but it was really happening—part of their “educational” program was to walk around the grounds picking up the trash during lunch! I was appalled. In fact, the reason I was visiting the school was because the administrators there wanted to put a child with autism into that very special education class, and the parent didn’t want her to be there. After we visited, the mother quite understandably said that she didn’t want her daughter picking up trash. The school’s response? “Then she can wrap sandwiches in the cafeteria.” And this is a child who can carry on a full conversation, who reads, does prealgebra, and loves to socialize. This was theoretically preparing her for life on her own after high school, but instead of widening her fu
ture choices and career possibilities—which is, of course, the point of education—the school was narrowing them, as if a job performing menial tasks was the only possible future for this girl. Fortunately, this child’s mother didn’t let it happen. Every child on the spectrum—or with any disability, for that matter—should be able to work at a job she enjoys.

  There are some steps you can take to make your child’s future better, the first and most important being to keep him fully included at school, or at least included as much as possible (the more included the better). Don’t let your school force you to put your child into some kind of special ed program like the one I described above—your child needs to be learning the same things his peers are so he can figure out what he’s good at and enjoys doing, and so he can continue learning what it’s like to function as an integral part of society. Years of picking up trash will make him good at doing one thing: picking up trash. If you want something different for your child, keep his options open by keeping him included with typical peers, socially and academically, through peer social groups, partial participation, priming, and so on, all the way through the school years.

  First Jobs

  Of course, your child’s first jobs are going to be for you, her parent. As we discuss in Section VI, Chapter 3, on managing behavior, doing small jobs around the house is an important part of achieving independence and self-reliance. From the time your child is old enough to follow directions, give her age-appropriate chores to do and increase her responsibilities as she grows older and more capable.

  Different families have different rules about rewarding their kids for household chores. Some view an allowance as payment for chores performed, some think chores should simply be part of a child’s responsibility as a member of the family, some pay separately for each and every chore, and still others pay above and beyond the allowance for what they see as “extra” jobs (such as washing the car or running an errand) and not for the regular, daily chores such as setting the table. You can choose what feels right for your family, but it might be a good idea to occasionally relate the performance of a job well done to payment, so your child gets the idea of working for money and the subsequent pleasure of spending that money freely. And don’t forget to take your child out to spend his hard-earned money. We worked with one family who started paying their son for chores but never took him to buy anything. Needless to say, he eventually stopped doing his chores. But a simple trip to the store to buy a desired item changed everything so that he was asking for more chores.

  Praise is also important: if your child listens to directions and follows them carefully and completes the job fully, then she deserves your full and heartfelt praise and thanks. If she doesn’t, then this is your chance to impress on her the importance of doing all those things, before it becomes a real-life, out-in-the-world situation. Jobs begun must be completed. Instructions must be followed. And you shouldn’t forget to pay her promptly. If you keep forgetting to stop by the bank on the scheduled pay dates, you’ll probably have a much less enthusiastic worker. All these things will help prepare your child for that important first real job.

  First Job in the Real World

  Again, different families have different feelings about when a child should start earning money out in the world. Some feel it’s important to start as early as possible and will encourage their kids to babysit and mow lawns when they’re still too young to be hired in the adult world and to look for a real job outside of the home once they’re not. Others feel they’d rather have their kids focus on studying and extracurricular activities and not worry about holding down any kind of a job until after high school or even college.

  The decision is yours, but if your child is old enough to apply for a job, and some of his friends are doing so, and he expresses the desire to do it or you feel it would be advantageous, then it’s probably worth pursuing. But you do want to make sure that these early forays into the workforce are successful, so take some time to prepare the way.

  The ideal thing is to find a close friend or relative who runs a store or office and ask her or him to hire your child for a few hours a week. Don’t feel awkward about this—most jobs are acquired that way. Make it clear to your child that even if she knows the owner, she’s expected to work hard and be respectful at all times. Have her dress appropriately for the job and always arrive on time. Stay in touch, and if any problems arise, do what you can to manage them, such as using self-management techniques (see Section I, Chapter 2), so your child can monitor her own performance. If you hear from her boss that she’s not performing to expectations, it’s time to have a serious talk with your child to let her know that employers won’t tolerate anyone who doesn’t try. And if she’s doing good things, celebrate! When she gets her first paycheck, make a big deal out of depositing and/or cashing it and praise her like crazy.

  In this protected environment, your child is likely to succeed—and if he doesn’t, at least you’ll have learned where any future problems are likely to lie, and you can work on fixing them right away.

  If you don’t have any friends or relatives who can help you out, there are other ways to set up a protected first-job environment. One mother I know discovered that a local camp director was more than happy to “hire” young teenagers as assistant counselors (their salary actually came from their parents, but they didn’t know that). We have hired many people on the spectrum at our Center—some assist with our summer camp and others work in the office.

  Even if you can’t find a paid job, volunteer job experience can be helpful. Some camps accept CITs (counselors in training), and if they do well, they are hired as counselors the following summer. Volunteer jobs can get a child used to showing up on time at a job and helping out—in a safe environment without any risk of failing.

  High schools sometimes run summer programs for younger kids that their students can help out in, for pay or community service hours. And I’ve known kids on the spectrum who have been hired by the clinicians who work with them to help younger kids on the spectrum with their programs.

  So ask everyone you know, and you’ll probably find that perfect first job.

  Future Jobs and Careers

  Obviously, unless your family owns a business that can employ your child right out of college, you can’t supply your child with jobs forever, and you wouldn’t want to. First jobs are supposed to be about learning to work hard and being paid for it. But the jobs young people seek out when they’re all done with their schooling ideally help to set them on a path toward a career they’ll find fulfilling.

  We know one young man on the spectrum who got a master’s degree in psychology and now works with kids with disabilities. Another works in the library—his absolutely favorite place in the whole wide world—and he’s very good at asking people to “quiet down please” if they’re too noisy! Another college student we know works with all his friends at a local hamburger joint near the college that almost exclusively employs students. He loves the job, and as a “starving student,” enjoys the free hamburgers he gets every day. A young adult we worked with loves the outdoors and landed a job with the Forest Service. Finally, one adult with limited verbal skills, who always loved taking Jacuzzis, actually got a job cleaning them for a company that lets him jump in after he finishes his work each day.

  All of these jobs were carefully selected with the individual on the spectrum in mind. Some were self-selected, and for those with fewer verbal abilities, their team carefully selected jobs that would be enjoyable, incorporate their interests, and maintain their dignity.

  And as I mentioned earlier, your child’s education has a lot to do with the career choices he’s likely to have as a young adult. That alone is a good reason to help your child achieve the highest level of education possible. (See Section IV, Chapter 3 on ensuring a successful college experience.) Kids often find something they’re passionate about during their college years and start to specialize in it at school. If that goes well, it may lead direc
tly to some very specific career choices.

  Of course, even if your child knows what job he’d like to have, that doesn’t mean he’ll get it. There are several steps you can take that might help him obtain that dream job—if not immediately, then down the road.

  • Keep it realistic. One problem I’ve encountered with some young adults on the spectrum is a propensity to believe in things that just aren’t very likely. If your daughter has a tendency to speak grandiloquently about how she wants to own a movie studio one day, or your son says he’s going to be a famous pitcher (well past the age when most kids have given up that dream) or own a fleet of private planes, you need to kindly but firmly bring reality back into the picture. She can’t go out and buy a movie studio—but maybe she can get a job working at one. He’s not likely to be a world famous pitcher—but maybe the local newspaper would be interested in an assistant who has as many sports statistics memorized as your son has. Owning a fleet of private planes may not be realistic, but being a pilot or even a business major may get her nearer that goal.

  • Help sort through the options and find some concrete possibilities. You might even make some discreet inquiring phone calls on your own. Even though your child is an adult and will ultimately have to prove herself on the job without your help, there’s no reason not to step in and help her during the job search. Find a menu of possibilities you can discuss with her. Gauge her reaction, provide more details, maybe even expose her to the workplace. The goal here, basically, is to feel out what interests your child and might make her happy.

  • Assist with the application. Read through and make suggestions. You would be surprised at how many challenges some of our students have with applications (and time sheets). We’ve had adults write the job title under “Name” and put in information that’s completely irrelevant under “Previous Experience.” Job applications can be a great learning opportunity. Make sure that your child understands about tailoring the application to the specific job desired.