Special Education—

Young Lives At Opposite Ends

Of The Autism Spectrum

By Nancy K. Crevier

(As part of an ongoing series on special education, this report looks at transitioning into the teen and young adult years for children with disabilities. Names have been changed to protect the privacy of individuals in the story.)

Wendy Wheeler’s son, Jeff, is 18 years old. He teaches tennis, and he walks dogs to earn money. He has a girlfriend, drives, and plans to buy a car. He also has Asperger syndrome, an autism spectrum disorder involving difficulties with social and communication skills, limited empathy, and repetitive interests and habits.

Jeff has found a way to be happy, said his mother, but not before the Wheeler family endured years of misdiagnosis and medication, and a merry-go-round of testing, schools, courts, and psychiatrists who disagreed on the reason behind Jeff’s troubling behaviors.

“Most people do think there is something a little odd about Jeff when they meet him,” admitted Ms Wheeler, although it is not clear what that “something” is. Educators noticed it as well, along with his confusing behavior in the classroom.

Testing began when Jeff was in first grade. When he was 11 years old, that “something” was misidentified as bipolar disorder, a serious mental illness that can lead to risky behavior, poor relationships, and even suicidal tendencies.

“By then, his behavior at school was worse. He was talking out of turn, he was wandering around. He was so frustrated he would begin screaming,” said Ms Wheeler. For his rebellious behavior, he received improper corrections and no prompting, which would have been a tool had his illness been properly diagnosed. The medications he took were meant to try to change his thinking, but with Asperger syndrome, a child needs the environment changed to help him or her adapt. “You can’t change how they think. Everyone thought he was just not trying hard enough and that he was willfully misbehaving,” Ms Wheeler said.

But at home, he did not exhibit a rebellious nature. At school, though, the problems escalated, even as he hit all of the functional and educational milestones many disabled children cannot. “He is gifted in math, but he does struggle with language,” said Ms Wheeler. “But he didn’t really blend in with the other kids. There were always problems in group gatherings, and while neighborhood kids initially tried to include Jeff, his rigidity around rules or construction of rules only he understood discouraged other children.”

An occasional shoving match cropped up when Jeff vented, frustrated by others’ inability to see things his way. “I would keep trying to get play dates for him, but it was difficult. I had to referee a lot. You’re a constant buffer for your kid,” she said.

She does not blame the other children. “With kids, they need categories and they need people to fit into those categories. They don’t mean to ostracize the disabled. Disabled people are different, so it is hard for others to accept,” said Ms Wheeler. Even harder, is when the disability is not visible to the eye.

The Wheelers put Jeff on one medication after another, in hopes that something would address the bipolar behaviors. At school, the issues ballooned. Change is a difficult thing to a child with Asperger syndrome, so when substitutes came into the classroom, it was an uncomfortable situation for everybody. “He wouldn’t listen to the substitute, and the substitute didn’t understand him.” When a substitute handled his backpack one day — a personal intrusion in the eyes of a child with Asperger syndrome — Jeff wrestled it away, and in doing so pushed the teacher.

It was the last straw for the administration, and the Wheelers were told either they enroll Jeff in a special school in Danbury, or he would be arrested and suspended. At that point, the Wheelers did not feel that all possibilities for helping their son had been properly explored, but with their five-foot tall, 90-pound son threatened with arrest for assault hanging over them, he was removed from the system. He was in the sixth grade.

It was a trying time for Ms Wheeler, her husband, and their two other children, now 20 and 16. “They would get frustrated. They still get frustrated. They don’t care what the label is that is put on Jeff. They just don’t want him in their faces and being so opinionated,” she said. Jeff does not always filter what he says, and because he does not easily empathize, what he says can be hurtful. “He just sees it all as fact,” said Ms Wheeler.

Moving Out Of The Mainstream

“I definitely believe in inclusiveness for the disabled,” said Ms Wheeler. “I’m a firm believer that everyone should be as happy and constructive as they can be,” she said. But as much as she wanted her son in the regular school, and in his hometown, removing him from the mainstream setting actually was constructive. “He did very well at this school. His behaviors were addressed and he was empowered to deal with his issues. The smaller classroom helped,” she said, and it appeared that he was ready to reenter public school. The transition into the public middle school, though, did not go smoothly. “Protocol wasn’t followed. A stigma kicked in. The kids and the teachers all knew he had been away at that school and had problems. Jeff started to feel like the other kids weren’t friendly,” she said.

When he had a significant outburst one day at school, Jeff was arrested and kicked out of school once more. “I was dealing with a lot. He had resentment toward me for sending him to the school in Danbury, he resented me for putting him on medications, and for the testing. The kids at school were teasing him,” Ms Wheeler recalled. On top of the stress of school, the Wheelers divorced. “And he resented me for that, too,” she said.

This time, Jeff ended up enrolled in a school “that was horrible. There were kids in there who had raped, and who were truly criminal. But there were not any openings in the school in Danbury at the time. It was just awful.”

Equally awful, was that others did not believe Jeff was not a problem at home. “I handled him differently than at school, I guess. He was comfortable here,” she said.

Ordered by the court to undergo an intensive psychiatric evaluation, two different psychiatrists, including one from Yale New Haven Hospital, came up with a new diagnosis that suddenly made sense to Ms Wheeler: Asperger syndrome. By now, Jeff was 15 years old, long past the early years of proper intervention. “If you fall under the autism spectrum, it is the difference between apples and oranges as to how you are trained,” lamented Ms Wheeler. “Getting a diagnosis so late was a problem. We didn’t get the transitions through school that kids with properly diagnosed disabilities get. I did grieve for a while that he doesn’t reach some of the goals in the same way other kids do,” she said.

Adding to Ms Wheeler’s duress was the gloom and doom future prophesized by Jeff’s longtime psychiatrist, when his bipolar diagnosis was challenged. “I was concerned. He was becoming a young adult,” she said.

Jeff’s past behaviors meant that he was not allowed to enter the public high school, something he very much wanted. “He was stoic through this, but with Asperger, there is not a lot of emotion or depth of understanding of the condition. He spent his ninth grade year and the beginning of sophomore year at that other awful school,” Ms Wheeler said. When the State Education Department wanted him to transfer to a school even less reputable, and even further from home, Ms Wheeler removed him from school. “The high school sent a tutor for a while, and I did some home schooling. When I pulled him out of school, he calmed down. He was off the medications and he lost 90 pounds and wasn’t so sluggish anymore. It was a hellish couple of years, though. He would be in another room playing video games, I’d be trying to work from home, and I still had two other kids to think about,” she said.

But giving him space, helping him focus, and to her amazement, the immediate feedback of video games have helped Jeff to figure out how to deal with people.

Would Jeff have mainstreamed more easily with a correct diagnosis? “I don’t know. I believe in inclusion, but for Jeff, it didn’t work,” Ms Wheeler said.

Challenges And Goals

The challenges are still unfolding for the Wheelers. “Jeff is very goal oriented, so he made up his mind to get his driver’s license, and he did, and he has a job. But he still thinks he can do a lot of things that he really can’t,” she said. Attending college is one of those things.

A tennis pro with whom Jeff works has dangled the carrot of a tennis scholarship under her son’s nose, if he gets into college. “He doesn’t understand that Jeff hasn’t even finished ninth grade, and Jeff doesn’t understand that when he is in college he has to go to the classes and pass — not just play tennis all the time.”

Ms Wheeler does not want to discourage her son, though, despite her fears that she will be the one to pick up the pieces if he is unable to complete his GED (General Educational Development degree), pass the ACT or SAT test, or get into college. “I don’t know how to tell him he can’t do it. Why not let him try? What if he is able to get in, and to absorb enough of each class to pass the tests? It’s not for me to stop him. My job is to be the cheerleader,” she said. So she not only encourages Jeff to pursue his GED, but pushes him to do so.

“You give up your box of dreams and how you plan to prepare a child for life, at some point,” said Ms Wheeler. Jeff may not get into college. But she does not doubt that her son has the life skills necessary to one day live on his own. “That’s a goal,” she said. “He has hit the usual milestones, but it has been bumpy, with pot holes and lots of cliffhangers. He’ll find a way to work things out. I just don’t know what that is,” she said.

Inclusion Is Important

“We have come a long way in accepting people with disabilities,” said Sharon Brown. “Of course, we all need more education. People don’t understand, so inclusion is an important thing,” she said. The mother of Will, a 21-year-old young man diagnosed with autism, Ms Brown’s mantra through all of the ups and downs of raising a child with disabilities has been “Fair isn’t that everybody gets the same. Everybody has different needs.”

Sharon and her husband, Jim, suspected early on that compared to Tom, their first child, Will was not developing on schedule. When he was 18 months old, she brought it to the attention of the pediatrician, who suggested she have the school system evaluate him. “They suggested further testing at Newington Children’s Hospital [now Connecticut Children’s Medical Center], and at 21 months of age, Will was diagnosed as being autistic,” she said.

She feels fortunate that Will was diagnosed early. The Browns enrolled him in the state Birth to Three program, where he learned sign language and skills for engaging. “At that point, we didn’t know if he would ever speak,” Ms Brown said. A special preschool followed, five days of the week. “I saw how he benefited. The program integrates typical and disabled kids, one on one. The typical kids acted as role models. When kids are young, they are so accepting. It was very staff intensive, too, with all of the teachers working together, and he was able to transfer skills learned at school, to home,” she said. It was at this time that Will began to speak.

“You don’t know if you went a different route what would have happened, but it seemed to work for Will,” she said.

Will is considered to be on the high functioning scale of autism, which is typically a communication disorder, said his mother. “Will can speak, but not until he was 4 years old,” Ms Brown said. He has processing problems that do not allow him to express what he has absorbed, and has what are known as “splintered” skills. “He is very good with numbers and putting things in order, or organizing things. But he makes connections all the time that make perfect sense to him but not anyone else,” she said. For example, he might tell her that if she tells him to do some3thing, it means he must watch The Lion King. “I don’t know the connection,” she said.

He is highly sensitive to stimulation, which as a young child triggered tantrums, or can be prone to fears that he is not able to clearly explain, such as the time he suddenly would not enter the family play room. The Browns emptied the room entirely, and one by one showed Will each item that was being replaced, until they came across the offending Forgetful Spider book that had set him off. After making a huge production of getting rid of the book, Will happily reentered the room. “That is not an atypical way for Will to respond,” she said.

Ambivalent About Companionship

He does not desire companionship, but is not opposed to it. “We took Will everywhere and tried to include him, but he kept to himself. We did force socialization in elementary school, and it went okay. All of the play dates were facilitated, though. Will is very comfortable in his own skin, but he prefers to be alone,” said Ms Brown.

School days, from elementary days on, were not problematic for Will or for the Brown family for the most part. “Will has a magnetic personality, even though he is not social. He is honest and open, and I think because he does not react, any teasing fell flat. If there was any, it was never an issue we heard about,” said Ms Brown. Her older son, on the other hand, endured teasing from his peers about his younger brother’s peculiar behavior in elementary school. “The other kids would hear him shrieking down the hall and tease Tom about it, and that bothered him,” she said. An intervention in Tom’s classroom to explain Will’s disability did wonders to stop that teasing, she said.

The Brown’s daughter, Alexa, four years younger than Will, did go to a support group sponsored by Newtown Youth & Family Services for young people with disabled siblings. “I think it really helped her to talk with other kids in her situation. But Tom and Alexa have always been accepting of Will’s differences,” she said.

Will was not interested in the normal developmental activities of middle and high schoolers, said Ms Brown, preferring very “young” playthings and interests. He did reconnect in middle school with the girl who had been paired up with him in preschool. A Girl Scout, she organized a group to do a monthly activity with disabled children, which Will enjoyed very much. He made three good friends, whom he has to this day, in the resource room at the middle school. He also joined 4-H. “But he didn’t care about dating, or the school dances. It was a relief to us,” confessed Ms Brown, “that he was so comfortable with himself. Some of his autistic friends struggled, because they realized that they were different.”

He watched his older brother learn to drive, and some of his friends with autism have gotten their driver’s licenses. Now, his younger sister has started driver education, but Will remains uninterested in tackling that skill. He has learned to use the SweetHART bus service to get to and from his jobs, complaining only that the bus schedule is not as precise as would make him wholly comfortable. “He totally accepts his disability. He doesn’t want to learn to drive for now. He was afraid he would crash. He actually praises Alexa for her driving,” Ms Brown said.

After high school, Will audited WestConn programs and built on the life skills he learned in high school. He holds two jobs, and continues to live at home.

Every Child Is Different

“When Will was in the Birth to Three program a therapist said something to me that has stuck,” Ms Brown said. “She said, ‘It’s hard to think he’ll never grow up and have a family.’ That had never occurred to me. I was devastated. Why would you project that on a 3-year-old?” she asked.

“I always try to remember that every child is different, so it is not heartbreaking to me when certain milestones pass. Will is so happy. It’s like his disability protects him, but everyone is individual,” she said.

Ms Brown does not rule out that her son might one day develop an outside relationship and live more independently, although right now, he has not indicated he is ready to do so. “Why should we force him to do things he’s not ready for or want to do? I don’t mourn that,” said Ms Brown.

Seeing his older brother go out on his own has opened up some conversations. “We talk generally about him one day living on his own. He might one day live in a group home situation, and that is something we do have to start looking into and preparing for. It can be difficult to get in,” she said. They have also been proactive in setting up a trust fund for Will, making up a will, and doing what they can to protect his assets “for the future, when we are no longer here,” said Ms Brown.

“I believe that early intervention worked for Will, and it was important for him to have that balance of inclusion and one on one instruction in school. It was important for him to be part of the class, and get what he could from it,” she said.

Educating the public about people with all kinds of disabilities remains a challenge, she said. She has been shocked on occasion to encounter blatant discrimination against her son, to have outsiders misunderstand the special conversations she has with Will and make fun of him, or to see fear in people’s faces. “Will actually carries a card saying he is autistic, and explaining what that means. It can help him out in situations where he might get in trouble if someone doesn’t understand things like why he isn’t responding to them in a way they would expect,” she said. Inclusion of youth with disabilities in school and social situations is one way for young people to learn about differences,” said Ms Brown, and to become the adults who will understand.