Growing Up on the Spectrum

by Lynn Kern Koegel

  • Prepare him for the interview. Make sure he’s dressed appropriately and looks neat for that first impression. Review the questions an interviewer is likely to ask and make sure his answers are what they should be. If they’re not, suggest some better responses and then practice them with him. This is critical. If appropriate, have him e-mail after the interview with a thank-you in which he lets the potential employer know how much he enjoyed the interview and how much he would enjoy working at that company. And if your child doesn’t get a job he applied for, encourage him to e-mail or call the interviewer (or you can do this) to find out in what ways he could have done better.

  • Set up a grooming and preparation checklist for work-days. Once your child does get hired, make sure she knows what she has to do each and every day to get ready for work. If she has trouble keeping it together, make a self-management chart. Teach her about arriving a few minutes early and leaving a few minutes late, just to make sure her employer knows what a hard worker she is. Teach her about good communication with her employer, and how to ask for more work. Finally, many kids on the spectrum don’t understand how important it is to smile and have a good attitude. If your child doesn’t, it’s a great idea to practice greeting people with a smile, asking them how they’re doing, and speaking positively about the job.

  • Check in. Speak to your child often to see how the job’s going. If you sense there are any problems, do what you can to help him overcome them. You want him to be independent, but you should always be willing to offer support. For adults on the spectrum, independence is best maintained with some amount of distant supervision.

  Some Career Areas That Work Well for Adults on the Spectrum

  Your child may have her own ideas about what she wants to do when she’s ready to find a job, but if you feel that she’s waiting for your lead, these are some areas you might want to consider steering her toward:

  • Microenterprises. Most everyone would like to own his own company, and for many years that goal wasn’t a possibility for someone on the spectrum. We have seen an increase in microenterprising, where kids with disabilities can actually learn to develop a business within their interests, whether it is computer business, dog grooming, car detailing, accounting, or whatever. There are new agencies that work with people to help them develop enough business skills to be able to start their own businesses and hire employees. (I was able to find several of them simply by doing an online search.)

  • Creative endeavors. Recently, a number of organizations have supported arts projects for kids on the spectrum. We have seen fabulous movies, books, and art produced by these kids, and the subsequent recognition can lead to useful business connections. Usually these organizations rely on donations and the sale of the kids’ artwork, but sometimes they can provide financial assistance for start-up projects.

  • Computer-related jobs. Several of our students have had good luck in the world of computer design and software development, possibly because so many young adults on the spectrum feel more comfortable on the computer than they do in more socially demanding interactions.

  Regardless of the amount of support your child needs to maintain a job, the important thing is that he enjoy what he’s doing. If he doesn’t have enough communication to express verbally whether he enjoys a job, take a look at him. Does he look happy? Are people nice to him where he works? Does he get up in the morning and leave the house with enthusiasm? If you’re answering “no” to these questions, it may be time to explore other job options.

  ANDREW

  The first real job I had was babysitting for my cousins when I was about thirteen. I got it because at one point, my aunt and uncle were both trying to look for babysitters for my cousins during the weekends and they realized that I was old enough to watch younger children, so they hired me to watch them. I actually liked that job not only because I was paid a good wage (about seven or eight dollars an hour), but my cousins are also really well-behaved and nice kids, and my aunt and uncle are both really nice. It really was not that hard but I would probably say that the hardest part of it was putting the kids to bed (because they always begged me to stay up later) even though I was good at it and my cousins would go to sleep when I told them to. We would play games and watch movies before my cousins went to sleep.

  Last summer, I also did some community service work for my school for my therapist’s summer autism program for elementary and middle school. I helped the kids out, telling them what they should be doing in order to participate in the program. I actually liked assisting the younger kids, not only to help them concentrate but also to play games with them (such as softball and capture the flag) whenever we would walk to a nearby park for lunch. The hard parts about my community service were getting kids to participate in games that we played within the program. Some kids would listen to what I would say to advise them, but others would not listen to me and would yell to me, “You are not the boss!” The easier parts were just playing games with the kids and having nice conversations with them during lunch.

  I have another job now, working for a dermatology company as a paid assistant. I really like my dermatology company assistant job mainly because everyone else who works there is really nice, but it also uses computers, which I like to work with. For this job, I have also organized folders, scanned papers, and put labels on CDs. The only frustrating thing about this job was scanning papers. On my first day of scanning, I had to scan about two or three hundred old bills the company had. The scanner there has always been hard to work with and is complex, so on the first day I did everything wrong and the files were not scanned, so I had to start all over again. Because of that problem, I was worried that I would disappoint my employer. I was not worried about losing my job, but I was just worried that my employer would not think that I was good at following directions. The good news was that my employer was not mad and was very nice about it, telling me that everybody has trouble using the scanner. The easiest parts of the job for me were probably burning CDs and DVDs, organizing files and putting labels on the CDs and DVDs. I would definitely do my dermatology company work again (which I already am doing) and I would probably also do the community service again if I need it for school.

  I mainly like to do work that involves computers and organizing. When I grow up, I want to make Web sites, animations, or video games for computers. Even now I like to make my own Web sites on Freewebs (a free Web site design program online) and make my own games and animations on Macromedia Flash (a 2D animation program) by following tutorials.

  I think that if you are going to find a job, the best thing to do is to find something that interests you. It is good to make a lot of money from your job to help with your financial needs, but if you want to make money, it is best to find something that you want to do and that you will be happy doing for a long time. If I had to choose between a high-paying job I did not like over a low-paying job I did like, I would probably prefer the low-paying job I did like. As I said before, in my opinion, you should definitely find a job you like that you could maintain for a long period of time without quitting.

  I would highly recommend that teenagers start working. It is great if teenagers want to have more money to spend and save for the future and it would also help them get a better sense of what the job application/interview process is like. And also, if you are getting a job, you should be really responsible and put a lot of effort into doing the interview and making your résumé.

  Frequently Asked Questions

  After some searching, my son finally got hired at a local business. It’s a starter position but there’s potential for him to move up through the ranks over time, and I’m thrilled. The only thing that worries me now is his expectations. I’ve overheard him talking to people and from the way he describes his job, you’d think he was being hired as CEO! He’ll find out soon enough what the actual work entails, but I’m concerned that he’ll lose interest with the job once he realizes it’s not as high-level as he’d hoped.
How do I get him to stick it out and understand that someone with his level of education and experience has to pay some dues?

  The great news is that your son has worked hard enough to get the job. He may be aggrandizing the job a bit to impress his friends, but we’ve all had jobs that weren’t what we expected or were tedious and boring while we were in college or trying to work our way up. If he expresses some discomfort that the job isn’t what he expected, have him first work hard so that his employer knows what he’s capable of and how much he puts into the job. Then have him talk with his boss to find out exactly what the promotion schedule is like and what the likelihood is that he’ll be able to get promoted. If it’s optimistic, then it should give your child more of a reason to keep working hard. If it doesn’t look good, it may be time to search for a more compatible job that will give your child advancement opportunities.

  My daughter went to a local junior college program where she learned life skills and some basic menial job training. I want more options for her, but I don’t think she could make it through a four-year college. Is there any other way to expand her opportunities?

  The first step is to figure out what your child’s interests are and where her passions lie. The second step is to get her specialized training in those areas. This can be through extension courses, online courses, or on-the-job training. As mentioned earlier, it is not acceptable for your child to hold a menial job if she doesn’t want that type of job. Keep searching for supportive businesses and educational opportunities for her.

  My daughter came home from work upset yesterday and went up to her room, where she stayed for the rest of the day. When I asked her if something had happened, she refused to talk about it. Do you think I could call her boss just to check in? Or would that make her look incapable? I want to stay on top of things but she won’t tell me anything.

  If your child works at her job completely independently, it may not be a good idea to get involved. You may want to wait this one out and see if it passes. We all have bad days now and again at work. However, if it persists, I would try to get involved. You may want to drop in at the job site and see how she’s being treated, without letting people know that there may be a problem. In the meantime, try to get your child to communicate with you so that you can help her out. And if more subtle approaches just don’t seem to work, you may want to find someone whom she’ll confide in. You’ll have to weigh the possible negative and positive outcomes before making the decision to check in with coworkers or her employers. And if you do decide to call her employer, you may want to let her know that you’re thinking of doing that. Sometimes unhappiness can be totally unrelated to a job. I had a friend whose child was in physical pain but didn’t want to talk about it. Eventually the child confessed that he had a serious and painful physical problem, but not before his parents had wrongly guessed just about every other potential problem. Again, communication is the best thing.

  What skills should I have my child focus on in high school and college to best prepare him for jobs afterward? I’m not worried about his having a great, fulfilling career—I just want him to be able to earn a little money and maybe one day live by himself.

  First and foremost, getting along socially is what can make or break a good job interview and help someone keep a good job. That’s most important. Next, your child will have to navigate the world of applications, interviews, and financial planning. Finally, teach your child about going the extra mile. If a company has a financial hardship, they’re going to keep the employees who don’t watch the clock but who get to work a little early and complete that last job even if it means staying a few extra minutes. They’ll also prefer those who get along with others and who keep a positive attitude about work. These are all things you can work on with your child, and they don’t require any special aptitude other than a willingness to learn.

  3. Living Conditions

  Our son has lived with us his whole life, but now that he’s well into his twenties, it just doesn’t feel as if it’s in his best interest for him to live with his parents anymore. We’d like to see him become more independent, especially because there’s a world full of young people his own age out there. But he’s not really ready to live alone. What are our choices?

  CLAIRE

  Remember your first apartment? It was probably small, ugly, and falling apart, but you loved it because it was a symbol of your independence and burgeoning adulthood.

  There are so many things we want for our kids because we remember how much they meant to us—long-lasting friendships, an exciting romance, the joy of holding your first baby in your arms, and, of course, a room/apartment/house (ideally in that order) “of one’s own.” Unfortunately, a lot of young adults on the spectrum don’t have the skills to move out of their parents’ home (or a supervised housing situation) to set up house by themselves.

  We’re lucky. I don’t doubt for a second that Andrew will be fully capable of living on his own. At the age of sixteen, he already can drive, cook, clean up his room, answer the phone, make plans, and do his own laundry. But back when he was a small boy who couldn’t even learn to talk and who seemed locked in a separate, isolated world, I remember being struck with the thought that instead of following the natural course of things and moving out of our house when he was a young adult, he might simply stay reliant on us. It was a painful thought, not because I wanted to be rid of him, but because I had always pictured my children hitting the same milestones I had hit as I grew up and became an adult. And there was something so giddily and frighteningly exhilarating about living on my own that first time—I didn’t want him to miss out on that whole wild experience. I’m glad he won’t have to.

  Andrew has been amazingly successful, but there are many young adults on the spectrum out there who simply aren’t ready to live a completely independent life. Fortunately, that doesn’t mean they have to live with their parents forever. There are other choices, maybe not as many as there should be, but more and more all the time.

  DR. KOEGEL

  Living conditions vary widely among people on the spectrum. Many live independently, hold a job, marry, and have a family. Others live in their own homes with assistance (varying from live-in help to occasional visits from someone who’s paid to check on them) and are able to get out, work, and engage in recreational activities.

  However, I’m very sorry to say that many adults on the spectrum live in substandard conditions. Too many live in group homes with eight, ten, fifteen, or even more other individuals with disabilities. I’ve visited some of these places and, believe me, I couldn’t wait to get out. Although their staffs are usually dedicated and supportive, these are facilities I wouldn’t want to live in—most have too many people with disabilities living in quarters that are too close, aren’t pleasant aesthetically, and don’t provide many opportunities for the residents to do anything outside of the settings. I had one dad tell me that every residential setting his daughter was placed in had the same stale and unpleasant odor. And if we don’t like even visiting these places, I can’t imagine how it would be living in one day in and day out. We need better choices for our young adults on the spectrum. To realize that, here are some recent options that are emerging as potential solutions:

  • Staying at home longer. Too often families would like their child to stay at home longer but just aren’t able to take care of them and aren’t provided with any resources to do so, so they’re faced with an either/or situation: keep them at home with no support or send them away with full support. We need to give families more support in their homes. If their children need constant supervision, we need to make sure that there are people available to provide them with that support. And this means helping families pay for these services.There are already some options available now. Some services that are generally acquired through a local agency specializing in programs for adults will provide overnight respite if the parents want to take a vacation or have a romantic get-away. Check with your local state ag
ency for disabilities about these options. A couple who own a farm in our area will take kids and young adults on the spectrum for the weekend—it’s like a summer camp with animals and activities, and after spending a weekend there, the weekenders beg to go back. Dedicated people who really want to care for adults with disabilities can provide support and comfort for short periods of time. We need many more of these regular but short-term “summer camp” options, where parents can feel good about leaving their adult children for a weekend, a few weeks, or another short-term period of time.

  • Live on their own in a house or apartment. There are lots of options for adults on the spectrum who live in their own home or apartment. Various levels of support can be provided. Some adults need a lot of support initially, but it can eventually be faded as they get to know the area, the bus schedules, their work schedule, and entertainment options. Other people need regular ongoing support and supervision from people who are paid to assist.

  • Live on their own, with roommates. Some individuals on the spectrum will also live in their own homes, but with typical peers as roommates. These typical peers are often provided with room, board, and a small stipend to help out. Some families have the resources to provide a home for their child, which is fantastic, but I’ve also known others who participated in state-paid programs. Those work out well. The ones I’ve seen have been nice homes with people who care. Different states vary in just how much they contribute, but if you live in a state that helps adults with disabilities, or if you can help set up a home setting with your child’s state and federal money, this may be the right setting for your child.

  • Small, well-run community homes. For many years, I was a board member for a foundation that provided care to individuals with severe disabilities and ran a community home that could service no more than four individuals. We had a backyard, daily outings, gourmet food, hired people who cared, and close family contact so that the adults could spend many weekends and holidays at home. But to create this environment, which wasn’t even as integrated as I would have liked, was expensive. We constantly had to have fund-raisers and request donations just to be able to service those four adults.There are several reasons for this. First, the state reimbursement rate for staff is very low—as far as the government is concerned, it’s basically a minimum wage job to work with people with disabilities. Although we raised funds, they were applied toward bigger items we needed, such as transportation, gardening tools, kitchen appliances, and so on. There wasn’t enough to help with staff salaries. Second, we didn’t get state money if the residents with disabilities went home for the weekend, even though we felt it was in their best interest to do so. Some of the state payments are based on the number of nights the residents spent there, so if they went home for the weekend—which we encouraged—we didn’t get paid for those nights. This is the reason many group homes have residents packed in. In fact, at one point the board had a disagreement over whether to add more residents for the sole reason of cost efficiency. Fortunately, a few of us talked them into quality over quantity.