Growing Up on the Spectrum

by Lynn Kern Koegel

  Also, the government periodically checks to make sure everything is operating within the legal mandates. While their standards are there to protect the patients, the scrutiny occasionally reached absurd limits, especially when there was a temporary problem. One time our hot water monitor broke and the temperature had to be controlled by hand so that it didn’t get too hot—we were fined for this. And fined a large amount. This was money we didn’t have.

  So you can see some of the problems. What we were able to do was have a warm homelike setting with aquariums, nice furniture, good food, great employees (who unfortunately didn’t always last long), wonderful recreational opportunities, and great family support. But it was expensive.

  Unfortunately, there’s usually a long wait list for these types of comfortable community-based homes. In addition, the facilities often are reluctant to take kids on the spectrum who are disruptive, aggressive, inclined to run away, or have other behavioral issues. So adults with autism and challenging behaviors aren’t always the first picked.

  • Live with a family. Many couples or families provide a home and care (or foster care) for a person with disabilities. This can be a short-term or long-term arrangement. The home owners often get some kind of financial compensation, and the person on the spectrum becomes a regular family member. Although it may seem more like a business arrangement than a familial one if the home owners are being paid, I have met many, many wonderful families who have chosen to have an adult person on the spectrum, who is unable to live alone, move in. Essentially, the desired outcome of your child having a “family” happens with this type of arrangement—they go on outings, celebrate holidays together, and so on. Often, the biological family of the adult on the spectrum will spend weekends and holidays with them, but even if they can’t, the adult is in a home environment, surrounded by a real family who cares.

  April’s Story

  April is a student in our PhD program who is just about to complete her dissertation. I had observed her many years ago when she was in high school. A fellow researcher and teacher at her school had started a club aimed at helping students with severe disabilities. One of the students we were working with had autism and was participating in the club. At that time, I didn’t know April personally, but I was impressed by the way she and other students (a clique of high school kids who were recruited to have lunch with students with severe disabilities) took Jackson under their wing. They went above and beyond the required lunch periods and took him to sports events, movies, festivals, and just spent a lot of time hanging out with him. Jackson’s mother, a diabetic, suffered immensely during his high school years, and eventually (after several amputations and blood transfusions) passed away. His father was unable to care for him because he was partially paralyzed from a stroke he had had while Jackson was a young child. Jackson could no longer live at home, which, unfortunately, led to a few unpleasant years of living in less than acceptable institutional settings.

  Unhappy with his situation, Jackson’s friends got together and made a change for him. And April spearheaded the movement. I have asked this extraordinary woman to write about her experiences that changed this young man’s life.

  APRIL REGESTER

  When I was in high school, I was labeled an at-risk student because of my lack of involvement in extracurricular activities. At the time, most students had two periods out of six that they were allowed to spend doing any elective they were interested in (cheerleading, student clubs, sports, and so on).

  My counselor suggested that I become a peer tutor in the county special education program to fill my electives. I enrolled as a freshman, and during that time I agreed to participate as a subject in a research project on the perceptions typical peers had about students with disabilities. After that, I was recruited to join a club to promote friendships between students with and without disabilities, and I became an active member of the buddy program.

  While I participated in these programs I met Jackson, who was a special education student in the county class at my high school. We were the same age. I got to know Jackson and his family, and I realized that his situation at the time was not good. He was in and out of the house with his dad, who had had a stroke and used a wheelchair. While his father enjoyed Jackson, he had a difficult time caring for him on a full-time basis. At the same time, his mom had a terminal illness and was dying. Jackson was placed outside of the home during this difficult time and lived in a variety of institutional settings. After Jackson’s mom died, he continued to move around and spent small pockets of time living with his father. This did not work well for either of them and he again was placed outside of the home.

  Although he was my friend and we got along well, he was very aggressive toward staff at the institutions where he was living. He was kicked out of two institutions, various group homes, and a state hospital, among other places. I was heartbroken as I watched this take place over the course of five years.

  I graduated from high school, and, because of my high school experience with students with disabilities, I became interested in working in the field. I worked as a paraprofessional, vocational assistant, respite care provider, inclusion support person, and in many other related jobs.

  In the meantime, I had kept in close touch with Jackson, and shortly after we graduated, a group of his friends and former teachers got together to try to figure out how to help him stay in the area and improve his living conditions. This was a challenge because he had been turned away from every local living situation. We talked about options, and the idea of a supported living arrangement came up. It was a fairly new idea at the time but offered a person the option of living independently, with all the freedoms that go along with that.

  My husband and I volunteered to look into it and spent about a year researching programs and visiting homes that were considered to be the best. We, in essence, created a home where Jackson would be provided with twenty-four-hour support. Now, this may have been considered expensive to some, but in comparison to the amount the state was paying for residential care for him, with all his aggression, it actually saved the state money. However, many were skeptical about our intentions. They had a difficult time understanding our motives in wanting to help him simply because we were friends. But by that time, I was deeply involved in his life, understood his likes and dislikes, knew what motivated him, knew how to get him to get out and into the community, and basically felt so close to him that he was like family to me. As we moved forward with the idea, the state agency haggled with us, so we rewrote and redesigned our plan, and presented many versions to the state. Finally, after we had reached our limit, we filed for a fair hearing and later that very same day our plan was approved.

  A year after we had started the whole process, we celebrated as Jackson moved into his very own apartment. In fact, it was New Year’s Day, which made it more eventful.

  Our goal was to provide the best life possible and to create a life that Jackson wanted. We had many meetings, and with a core group (including Jackson), discussed what would be the best for him. Jackson had many requests. He did not want to live with someone who had a disability. He wanted to be able to play his trumpet. He did not want stairs in his home. He wanted to have mostly women helping him out. He did not want a lock on the refrigerator. He wanted cable television. And so on. After many interviews, we ended up finding a young (typical) male to room with him who was compatible in age and interests (he also likes music), and who had experience with individuals with autism.

  Next, we started hunting for a place for Jackson to live. Money was a huge factor, but we had a large group of people scouring the town for us. We put his name in a lottery for a new low-income apartment complex, which was exactly one minute away from my house. We won the lottery and secured a home that was downstairs and had a pool and other nice amenities. We made sure that Jackson’s name was on the lease, not ours, to be sure that regardless of who his service provider was, he would be able to stay in his home.


  At the time that Jackson moved into his own home, he was being heavily drugged due to his aggression and other disruptive behaviors in the institutions where he had been placed (some were dorm-style with hundreds of residents—all with severe disabilities). Fortunately, I was able to secure a grant that paid for a private psychologist to reevaluate the meds he was taking, which was basically a cocktail of Ativan (at high levels), Risperdal, Zoloft, and a variety of others. We worked out a plan to lower the medication levels and increase the behavioral methods to deal with his aggression. Over the course of two years, he was completely taken off most of his medication. Instead, we focused on training the support staff to use positive behavioral supports, antecedents, environmental cues, and natural consequences. There was lots of coaching and his aggression decreased dramatically.

  Simultaneously, we reinstated his trumpet lessons, which had been long forgotten in the institutions, took him to regular community events, provided him with a healthy diet, and made sure that he exercised daily.

  A combination of state funding, In-Home Supportive Services (IHSS), and Social Security pays for Jackson’s personal expenses and bills. While this split in the cost is very tricky, because different agencies pay at different rates, we have worked it out so that all of Jackson’s expenses are covered, and each employee’s hourly rate is higher than most others in the same field.

  During the day, Jackson attends a day program with individuals with disabilities. This is something we would like to change. While he enjoys the program, we would like to see him start a microenterprise to get job experience and become more financially independent.

  In the evenings, Jackson cooks, browses Borders bookstore, plays the trumpet, exercises, reads, listens to his music collection, hangs out with friends at events, goes to the movies, and does other fun things. On weekends he spends a lot of time out and about. He is now part of my family and is often busy attending whatever event we have going on: graduations, holiday celebrations, birthdays, and so on. He also has a large group of friends he spends a lot of time with, most of whom do not have a disability.

  Jackson has now been living in his own home with the same roommate for nine years. My husband and I never planned on taking on more people like most agencies but just wanted to help out Jackson. A large part of friendship is its reciprocal nature. Although people view what I did as beneficial for Jackson, I definitely got something out of it too. Because of my experiences in high school and beyond, I decided to go into the field of disabilities and am now completing my doctoral dissertation. During the last nine years, I have had two children, and the money we were paid for managing Jackson’s home helped me support my family. And while it wasn’t a large amount of money, the flexibility of my schedule allowed me to take graduate classes. Further, I was able to take my kids with me whenever I was with Jackson, training his staff, and managing his home. I also learned how to run my own business, train and supervise up to eleven people at a time, consult with other agencies, and in general, learn about the adult residential system.

  Jackson and I have continued to remain extremely close through all these years. He is genuinely a part of our family. My son’s first word was “Jackson” and we decided to give my daughter the middle name King because it was always one of Jackson’s favorite words, and he would repeat it frequently.

  Jackson and I have helped each other out in different ways. He is now stable enough to handle changes in his service providers (which used to really upset him). He loves his home and his friends and never, ever is aggressive, as he was regularly in the past. His latest support staff considers him to be very mellow and fun to be with, and can’t believe he was ever aggressive and unwanted by many previous residential settings.

  I met Jackson when we were both in high school. My group of friends and I spent lunches, weekends, and summers with him. We went to sports events, listened to him play the trumpet, and just hung out. And when his mom died, and his dad was too ill to take care of him, we stood by him. And now, almost a decade later, I look at him in amazement: he has managed to hang on to his core group of friends through all the difficult times he had, in addition to being unsuccessfully relocated from one institution to another. But I firmly believe that all of the early intervention he had as a child through the clinic and school, and the support from his mom, helped him develop some very important tools and skills to be able to connect and communicate with others. And now he is independent, happy, active, and a great guy to be around.

  Frequently Asked Questions

  We couldn’t keep our adolescent son at home because his behavior was too disruptive. He is now living in a residential setting with around fifty other adolescents and adults. I worry that they don’t take good care of him. When I visit, his clothes are dirty, he has no pictures on the wall, he rarely leaves the residential setting, and they basically let him watch TV for hours on end. What can I do?

  I would suggest looking into a different setting that has more opportunities for your child. I often see children who have disruptive behavior left to themselves in these types of settings because when demands are placed on them, they become disruptive. However, your child won’t learn if he’s left in front of the television for hours and hours. He needs a real program, one which includes chores, the acquisition of self-help skills, academic goals, and fun leisure activities.

  My son is getting older and I’m not sure if he’s going to be able to live on his own. He’s very smart and does well in school, but I’m very worried about the types of group homes that are available to him. Is there a way I can start working on this now?

  The best thing you can do for your son is to make sure he is learning how to live on his own. Have him help you cook, clean up, do his laundry, ride the bus, shop, get up on his own, dress and bathe on his own, and do other activities that will teach him independence. You can start setting up some self-management programs so that you don’t have to watch him constantly. All of these areas will help him live more independently when the time comes. And if he has any disruptive behavior whatsoever, make working on that a priority. Disruptive behaviors will cut way back on the community activities your adult child will be able to participate in, and even worse, he’s likely to be placed in a living situation that is focused on dealing with behavior problems, with a lower staff-to-patient ratio and, generally, other residents with behavior issues—all of which will mean fewer opportunities and activities, and similar roommates who are not likely to help him to grow and improve.

  4. Legal Planning

  I’ve taken care of my daughter her entire life. Despite all we’ve done, she’s still completely dependent on us at the age of thirty-five. She has no siblings. My husband and I were on the older side when we had her, and I’m terrified about what will happen to her after we die.

  CLAIRE

  I once had a great heart-to-heart talk with a man whose sister was on the spectrum. The whole family was wonderful, which was good because his sister was still quite dependent. She had her own little apartment, but a member of the family checked in on her regularly there, and the parents paid for it. She held down a part-time job, but it was fairly menial and the amount of money she made wasn’t close to supporting her—her parents supplied the rest. She couldn’t drive, so they all pitched in when they could to drive her places she couldn’t walk or ride the bus to. And she was socially fairly isolated, except for a few special clubs and organized outings, so her family provided most of her social life, picking her up and taking her out and arranging family get-togethers whenever possible.

  This man loved his sister dearly and was honestly happy to do anything he could to make her life better. But you could still hear the strain in his voice when he said, “I know that when my parents die, I am going to be completely responsible for her, financially, physically, and emotionally.” It was an overwhelming thing for a young man with his own growing family to have to take on. People all around us do it every day, of course: take responsibility for adult chil
dren, siblings, parents, grandparents, and others who can’t take care of themselves.

  No one can, or should, take the burden of caring about a family member away, but there are things you can do to alleviate the burden of caring for her.

  DR. KOEGEL

  Of all the concerns I’ve heard from parents of older kids on the spectrum, the most troubling is that they worry, day in and day out, about what will happen to their children after they die. Parents have been there to care for, advocate for, and abundantly love their children since they were born, but as they get older they realize that they won’t be able to do it forever. They worry that, once they’re gone, there won’t be anyone to take their place and make sure their children continue to have a nice life, are comfortable, are held to their highest potential, and make the right decisions on a daily basis.