As the alarm rings, Jake awakes from his deep sleep, and thinks to himself, “It’s just too early to get up, I just need 10 more minutes.” Like most teenagers, Jake rolls over, hits the snooze button, and goes back to sleep. Thirty minutes later, Jake reluctantly rolls out of bed, hops into the shower, and gets ready for the day. After a quick breakfast, Jake is off to school. As he leaves the house, his mother tells him that he needs to come directly home after school because he has sailing practice. He hops on his bike and rides to Nobel Middle School.
Walking through the halls, Jake can only think about all the great things that the summer will bring — there is the family vacation to Washington DC, riding his bike with his friends, swimming at the beach, Jr. Guards and his favorite activity, sailing. As Jake continues to walk through the halls, he spots a group of his closest friends, and decides to join them before math class begins. The conversation is the same as on all other days — talking about the latest movies, which teachers they currently don’t like, which girls they think are cute, and summer plans. As Jake is talking, another alarm rings, only this one tells him that he must hurry up and get to class. Over the next six hours Jake goes to and from class. Jake is in the GATE program and begins by going to math, then science, history, orchestra class, where he plays the clarinet, and finally football. While in class, Jake is usually paying attention to the teacher, but there are times when he daydreams instead.
When the final bell rings, indicating that school is over, Jake races home for a quick snack and then is off to sailing practice. The rest of the night is filled with his regular routine — come home from practice, do homework, a family dinner, and then play video games, sometimes with his younger brother, Nick.
Jake’s story is like so many other eighth grade boys. However, Jake is not like any average teenager. When Jake was four years old, he was diagnosed with Autistic Disorder (DSM IV-299.00). Fortunately for Jake and his family, he has been able to achieve what many people would consider a miracle. It is what researchers have described as obtaining “best outcome” which is defined as not needing supports at school and being indistinguishable to his peers, his teachers, and others in the community. And most importantly Jake is happy! He is excelling at school, has a good group of friends and has a bright outlook for the future. Though Jake has reached “best outcome” status, his path has not been easy. It has taken a great deal of hard work from professionals, from his parents, and most importantly, from Jake himself. This is Jake’s story.
The Journey Starts
The initial focus of therapy was to reduce Jake’s ritualistic play while expanding his language skills. If we were able to increase his appropriate play skills and language, it would facilitate his socialization skills. Obviously, we would be addressing those behaviors that greatly interfered with developing friendships as well as those that interfered with learning. Therapists would play Jake’s favorite games but gradually they would change the way they played. For example, they varied what color piece they used, who started and even some of the rules. Continuously, therapists insisted that he use more language, facilitating his spontaneous comments as well as asking questions. Early success occurred with intervention as Jake started to communicate more appropriately and engaged in less ritualistic behaviors.
Though success was initially seen, therapy also revealed additional skills that needed intervention. For example, Jake was extremely competitive and would exhibit tantrum behaviors any time he lost. Jake also became more and more non-compliant with his therapists and his parents, often refusing to participate in therapy or follow requests from his mother. Intervention was implemented to address these issues. For example, Jake received his favorite reinforcers when he graciously lost. He was also reinforced for compliance but would lose his turn when he didn’t follow instructions. We also began a frustration tolerance program to help address his intolerance to losing, with the eventual goal of teaching him coping skills. His competitiveness was simply creating social problems and therefore we felt we needed to address it directly. But the biggest concern was starting to become apparent. Jake was a bundle of emotions. He appeared to be angry and sometimes a very sad little boy.
Years Two & Three
The next two years of therapy had many up and downs for Jake, his parents, and his therapists. There were wonderful successes but these were tempered with emerging behavioral challenges. Although his language was exploding and it was extremely clear that he was bright, it also became clear that it was critical to even more directly address his disruptive behaviors. Jake’s non-compliance and attempts to “control the world” were greatly hindering therapy and certainly the development of friendships. Although Jake had outstanding skills, as long as he continued to refuse to listen and withdraw from peers it really didn’t matter!
Teaching Jake to become a better listener became a prime objective. To accomplish this goal a compliance hierarchy was established. Instructions were assigned to one of three categories: those with the highest probability of compliance; those Jake would follow sometime; and those to which he would rarely respond. If Jake complied with any instruction he received a great deal of reinforcement. However, if Jake did not follow directions, staff would remain neutral and he would lose the opportunity to receive reinforcement.
This intervention resulted in drastic improvements.
We then expanded the frustration tolerance program. Initially, we taught Jake to recognize when he was feeling angry versus happy. We believed that if Jake could become better at identifying his emotions he would be more able to cope with his frustration. At the same time we taught him to use guided imagery when he felt mad. Jake learned to think of his favorite cartoon character as soon as he started feeling the least amount of anger. The enjoyment he felt by imagining his favorite character had the effect of reducing his anger. Eventually the situations that triggered frustration were greatly reduced.
We also implemented an extensive play program to reduce his obsession with Star Wars (e.g., perseverating on the topic, insisting on only playing with Star Wars figures). We believed by expanding his play interests and building new passions we would reduce his intense interest in Star Wars. We picked interests that other boys his age demonstrated. So soccer and baseball became our focus. We hoped that this would facilitate the development of social relationships. We more directly addressed his social development by increasing his skills in paying attention to his peers, following their lead and joining in on conversations.
Kindergarten brought on new challenges, new behaviors, and big changes for Jake. The first issue that had to be resolved was whether support staff should go to school with Jake to help ensure success. Although Jake had made tremendous gains and was rapidly approaching becoming indistinguishable, it was feared that inattention and noncompliance might again creep in and eventually set him apart. Moreover, his fascination with Star Wars could emerge again without monitoring.
After much deliberation we determined that it would be in Jake’s best interest if staff were present. However, staff were instructed to be as unobtrusive as possible. There would not be any systematic contingency system, and assistance would only be provided as absolutely necessary. Staff were given the analogy that they were to act as if they were a “secret agent”. They should only become visible in an emergency! The students and their parents should never be able to detect that they were Jake’s shadow. They should be perceived as a classroom aide that the school district generously provided for the entire class.
Intervention at school mainly focused on increasing Jake’s independence, ability to attend and learn within a natural group setting, and of course social relationships. More specifically, targeted goals were Jake following group and individual instructions, paying attention to the teacher, staying on task, social interactions, staying in the group, and noticing what the other children were doing. Intervention was quite successful. Jake’s ability to learn in a group and pay attention to the teacher increased dramatically. He also became quite independent in the classroom. He was able to follow the class rules and schedule and complete tasks on his own.
Although Jake was having daily triumphs it was also becoming clear that Jake was having trouble simply being a child! He was not socially interacting. He would not talk to or even play with his peers. Jake appeared to be disinterested and was unwilling to socialize. It became critical that we develop programs to address these issues, to avoid him being stigmatized as a loner. More importantly, if we couldn’t increase his social interest we risked serious repercussions that could ultimately affect the quality of his life. Two other issues that were emerging were (1) Jake was growing tired of therapy and the demands that were being placed on him and (2) he exhibited a noticeably sad demeanor in school and at home.
The Elementary School Years
The course became clear! We were no longer concerned about academics and cognitive functioning. The mission was to concentrate all of our efforts on providing Jake the skills and interests so that he could develop meaningful friendships. Our expectation was that this would successfully address his depression as well.
We began by exposing Jake to situations that would facilitate his interactions outside of school. His parents arranged for play dates at their house. Although it was not always easy to find the right peer and parents who were agreeable, they were persistent in their efforts. This allowed therapists to work on social skills in a more structured setting than in school. In addition, Jake attended a sports camp which provided Jake the opportunity to interact with multiple children in a less formal setting. Finally, Jake started to participate in Little League and AYSO, which gave him additional children with whom to interact.
It was critical to develop individualized programs to help Jake learn the prerequisite skills needed to increase social interactions. A “cool-not cool” program was implemented in which Jake had to learn to discriminate between behaviors that were socially acceptable (labeled “cool”) and those behaviors that were not socially acceptable (“not cool”). Issues such as sharing, compromising and not perseverating were common targets. To teach these discriminations, one of his therapists acted out a behavior that was either socially appropriate or a behavior that was socially inappropriate. Jake’s job was to tell his therapist if the behavior was “cool” (i.e., socially acceptable) or “not cool” (i.e., socially unacceptable). Jake’s next responsibility was to demonstrate the behavior in a “cool” manner.
Gradually, we began to see slight improvements. Jake was
less off-putting in the classroom. However, during recess,
lunch, or after school he still remained unapproachable.
Nonetheless, we remained encouraged by the slight progress and
continued in our efforts.
Weekly, we started seeing Jake becoming more interested in social interaction; both inside and outside the classroom. As Jake became more socially engaged, peer approval became far more powerful. His perseverative and highly competitive behaviors started to reduce. Not surprisingly his peers became more accepting and then interested in him. One peer, Andy, captured his interest. His parents jumped on the opportunity and invited Andy for play dates and outings.
After Jake and Andy became friends we saw incredible improvements in Jake’s social interactions. He was becoming more social during unstructured times (e.g., recess, lunch, and after school), he started to play more with peers, and was increasing the amount of time that he engaged in play. In addition, the frequency of inappropriate behaviors that were often displayed during social interactions, such as gazing or slight body self stimulation (e..g, hand movements) decreased dramatically. But the job was far from over.
It was the goal for Jake’s cognitive functioning to continue to stay at grade level despite the tremendous increase in academic difficulty. At the same time, we wanted to decrease the assistance he needed to help him through the school day to avoid his being stigmatized by the additional attention he was receiving. In order for Jake to remain successful in the general education classroom it was important to make sure his academic skills were on par with his peers. Fortunately, Jake was a very intelligent child who had many strengths and was able to learn new skills and concepts quickly. Although Jake was clearly an intelligent child, he did have some noticeable deficits compared to other children in his class. As concepts became more abstract and therefore more difficult for him, he started paying less attention. A majority of the time, Jake would engage in competing behaviors such as gazing, looking down at his desk, or engaging in other self-stimulatory behaviors. If Jake did not pay attention to the teacher, clearly he would not be able to learn the material thereby requiring the need for a behavioral assistant, perhaps for the remainder of his education.
We contemplated many different programs ranging from subtle to quite intrusive. We had always rejected being intrusive. We simply did not want Jake to be identified. But, we felt that he needed extremely comprehensive programs that would require his shadows to provide him constant feedback. We rationalized that his behaviors were already distinguishing him as a student that needed assistance. Also, he had true friends. His friendships were based upon reciprocity and not because his friends felt they needed to take care of him or be nice to him. They simply had common interests and wanted to be his friend. So we were slightly less concerned about the repercussions of our being intrusive. We conferred with his parents. They had always been reluctant for him to be identified, but they understood the stakes and gave us their support.
The goal was to eventually decrease Jake’s need for behavioral
assistance by increasing his attention span when presented with
difficult material. We also wanted to teach him to be
better able to identify when it was important to pay attention
and when it was not as important. Most importantly, we
needed to teach Jake to self monitor his attention. The
foundation of the program was that he received tokens when
displaying sustained attention. These tokens were exchanged
at home for reinforcers (e.g., watching extra TV, buying baseball
cards, playing on the computer).
It became critical for us to transfer assistance provided to Jake from the shadow to his teacher. We desperately wanted to completely fade his shadows by the end of elementary school so that he could attend Middle School without any support. A fading program was put into place so that instructional control could transfer from the behavioral assistants to the teacher.
The teacher gradually became responsible for providing all instructions as well as providing feedback. Additionally, if Jake needed assistance, he was to ask the teacher and not his support staff. If for any reason Jake needed help, the behavioral assistants were instructed to give prompts either through a gesture or a non-verbal prompt. The third step of the fading program was for the behavioral assistant to walk around the room and help the other children in the class, forcing Jake to become more independent. We had gone back to secret agent mode. As Jake’s success rate increased, the behavioral assistants started to fade out the time that they were in the classroom, gradually increasing the amount of time Jake was in the class without them. Shadows were encouraged to systematically leave the classroom for prolonged periods of time. Eventually, it was planned for them to be “sick”.
Once the shadows were away for considerable durations of time, a change was made in the reinforcement system that was being implemented. It was determined that the token system that was being used was too cumbersome for the teacher and it needed to be changed so that both Jake and the teacher would be successful. The token system switched over to a simple self-monitoring system in which Jake was responsible for monitoring his own behavior and the teacher would then agree or disagree with Jake’s self-evaluation. The final component of the fading process was the removal of behavioral assistance all together so that Jake would be in the classroom by himself. In order to make sure that Jake would become successful, behavioral assistants who were unknown to Jake would occasionally go in the classroom pretending to be a teacher’s aide, and would monitor Jake’s behavior.
In his last year of elementary school, he was able to attend the school’s annual tradition of sending the fifth graders to a mountain retreat for a week where they were able to learn about nature and the ecology of the mountains. This was something his parents previously could only dream would happen. Additionally, while in the fifth grade, Jake won the school-wide spelling bee. By the end of elementary school, Jake was able to attend the classroom without an aide and was above grade level in all subjects. More importantly he continued to have meaningful friendships. It seemed as if everything was going well for Jake, as he was excelling in most areas of his life. However, Jake still continued to exhibit signs of depression. To help Jake with this concerning area, he started to receive behavioral counseling once a week after school from one of the behavioral supervisors at Autism Partnership.
The majority of the sessions were devoted to discussing Jake’s recognition of him being slightly different. He realized that it was harder for him to concentrate than his friends. Also there were times that it was hard for him to want to interact. Perhaps his biggest issue was not wanting to have support because he was embarrassed and stressed by having people constantly focus on the things that were ”wrong” with him. Jake and his counselor discussed various coping strategies he could use. They also talked about the typical struggles of adolescents. But perhaps the most valuable aspect was Jake simply being able to talk to someone about his issues. What became clear was that it was imperative for Jake to understand why he was different and why he was receiving support. We felt it was essential that he be informed about his diagnosis and therefore why we were “bugging him!”
Naturally, this was not our decision. His parents had to not only concur but strongly support such a decision!
Revealing the Diagnosis
Since Jake was originally only going to be in intervention for a short time, his parents had hoped they would never have to tell Jake or others outside of the grandparents and a few close friends about his diagnosis. They had started couples counseling in March 1996 when Jake was almost 5 years old to deal with the devastating issues that surround a family who has a child with Autism: marital stress involving differences in reactions to the diagnosis and prognosis, huge demands on time and reduced privacy, attempting to prevent people from knowing about Jake’ diagnosis and the isolation that creates and to just be able to discuss the emotions regarding the roller coaster ride involved in watching your child go through this enormous struggle. The decision to tell Jake required that Todd and Grace directly face all of their fears and sadness about the diagnosis. Preparing them for being able to tell Jake in an open, supportive, and optimistic way was critical.
The parent’s therapist, Jake’s counselor, Todd and Grace all met to strategize about the best way for all to manage this undertaking. Essentially a script was developed covering the information that Jake needed to be provided and points that his parents wanted him to understand regarding why this information had been withheld. Everyone brain-stormed about possible questions that Jake might have and the best responses to those questions. Having a specific plan for the words to use in the discussion was extremely useful in helping Todd and Grace feel more in control of the situation. Work would begin on preparing Jake for the actual telling and the process that would follow.
In their sessions, Jake’s counselor had introduced the importance of being familiar with your strengths and weaknesses and understanding that everyone has areas that are difficult for them. They were co-authoring a story that involved a character that was gifted with various super powers. The counselor suggested to Jake that maybe they explore what it would be like if their character also had a learning disability. Famous people that also happened to have disabilities with specific labels were mentioned.
Presenting to Jake the reality that struggles, and figuring out ways to deal with those struggles, are a factor in everyone’s life was a focus during sessions.
When the agreed upon time came, Todd and Grace started the conversation with Jake in his bedroom and sailed through the previously dreaded process. After all the anticipation, Jake had few questions and seemed satisfied with the explanation for why he had been receiving all of those annoying therapy sessions for so long. Most notably, he later apologized to his counselor for thinking that the staff had been bugging him for all of those years and what a pain he must have been. It was made clear to Jake that any time he wanted to talk about his Autism or had any questions, that both his parents and his counselor would be completely available. The hurdle was passed which provided relief for everyone involved, especially for his parents.
In June of 2003, Jake was promoted from elementary school. Standing in front of all the parents, families, and other children no one was able to identify any difference between Jake and his classmates. Shortly afterwards, Jake went back to UCLA for another follow-up assessment. This assessment revealed that he had above average intelligence. But perhaps more exciting was that he was socially adept. He was empathic, sensitive and socially wise!
Even though this was an exciting time for Jake and his family, it was also a scary time. Jake was now going to be going into middle school, where he would be facing dealing with several teachers, rather than just one. Middle school also brought more difficult classes, which would require that Jake pay even more attention. Middle school would prove to be a very exciting and challenging time for Jake.
Any concerns we had were quickly alleviated. Despite being placed in GATE classes and even without supports he was not only succeeding but was doing “A” work. He was navigating the challenging world of middle school, getting to class on time on a big campus, and being the little fish in the big pond.
In June of 2006, Jake walked across the stage and received his promotion certificate from Nobel Middle School. With a big smile on his face, his family taking pictures, and his friends giving him “high fives” on his way off stage, you could never have known all the hard work that made this moment possible. From the initial assessment at UCLA diagnosing Jake as having Autism, to the initial meeting at Autism Partnership, to the countless hours of therapy, to the final assessment at UCLA showing that he had reached best outcome, having an IQ of 120, all seemed worthwhile. Now at the age of fourteen, Jake will be heading off to a private high school without the support of Autism Partnership and without other than the typical worry of what the future will hold. The future remains bright for Jake — four years from now he will be walking across the stage of his high school and getting prepared to attend any college of his choice — that is if he can keep from socializing too much!