Teaching Children with High-Level Autism

Evidence from Families

Pamela LePage, Susan Courey

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781134487929
• Edition: 1
• Topic: Éducation
• Subtopic: Éducation générale

Teaching Children with High-Level Autism combines the perspectives of families and children with disabilities and frames these personal experiences in the context of evidence-based practice, providing pre- and in-service teachers and professionals with vital information on how they can help children with high-level autism reach their full potential. Many children with high-level autism are capable of regulating their behaviors given the right interventions, and this cutting edge text explores multiple methods for helping such children succeed academically, socially, and behaviorally. The book:

• draws from interviews with twenty families who have middle- and high-school-aged children
with high functioning autism or Aspergers syndrome;
• presents a synthesis of the most cutting-edge research in the field;
• provides practical advice for educating children with high-level autism;
• is authored by two special education professors who are also both the parents of children with
disabilities.

Teaching Children with High-Level Autism is essential reading for anyone who works or plans to work with children on the upper range of the autism spectrum.

Chapter One

Introduction

Many years before Susan Courey and I began writing this book, we started serving together on the board of an agency that provided socialization services for high-functioning children on the autism spectrum. Since that time Dr. Courey and I have enjoyed working with this agency, developing autism workshops for school districts, and teaching at San Francisco State University. We talked about the possibility of writing a book because it was clear to us that even acknowledged experts in the field of autism perpetuated misconceptions about how children with high-functioning autism learned, developed, and socialized. But it was when I met Mason and his mother that my idea for writing a book with Dr. Courey changed for me from a nice idea to an important goal.

When I first met Mason, I was scheduled to go to his family's house to conduct an interview because his mother wanted to find a socialization program that he would enjoy and would help him make friends. Mason was in his room when Iarrived, so I was able to spend some time talking to his mother. Donna was easy to talk to, and she was eager to talk about her son. As a seventh grader with autism, Mason had trouble making friends. Autism is a neurological disorder that is defined by people having trouble in the areas of socialization, communication, and imagination. The one and only common characteristic among all children, however, is socialization. Mason's mother was determined to get him involved with a program that would help him make friends, even if she had to spend her savings because this program was expensive. She warned me, however, that her son had no intention of attending any program and she hoped that I could talk him into it.

After my chat with Donna, I went into Mason's room because he didn't want to come out. He was behind his computer, and he didn't look up when I walked in. I could tell he was already angry and ready for an argument. The first thing he said to me was, “I don't want anything to do with that autism stuff! I am not like those other kids!”

I answered back, “How many kids with autism do you know?”

He said that he had met a few kids and that he definitely wasn't like them. I told him that I knew some kids with Asperger's and high-level autism and maybe he hadn't met the right kids. I told him kids with autism were all very different but some were like him. Mason was obviously smart; he had been surfing the Web before I entered his room and reading various sites to get answers to his questions. He already knew quite a bit about socialization and what he was “supposed to be doing.” His speech was clear and concise, and he knew what he wanted, or, more specifically, what he didn't want. He was angry, but he knew how to control his anger. I did not have the impression that at any minute he might start yelling or throwing something. I could also tell that although he was resistant, he was not recalcitrant. I was sure that he would try out this program if I told him what he needed to hear. As frustrated as he was, he knew that he needed help making friends.

He told me straight out that he refused to go to any program where there were “therapists” in the building. As far as he was concerned, he never wanted to see another therapist in his life. At this age, many children are tired of feeling as though they need to be “fixed.” I told him there would be no therapists in the building.

He responded that he did not want to go into any group where some adult was going to tell him what to do or how to act. He didn't want to have another “class” on the weekend, because he hated school.

I told him I had the perfect program for him, a program that brought teens with high-level autism together to make films, where the teacher is considered a “facilitator,” and the idea is for the teenagers to make their own decisions and to be independent. It took me a while but by the time I left I had convinced him to try the program by reassuring him that he could always quit if he did not like it.

The first few weeks Mason was in the program he was quiet. He didn't interact much with the other teens. But he did not quit. It took him a couple of months to warm up, but soon he was participating like all the other kids and having fun. Over time, I saw him transform from a very angry teen to one who laughed and talked and acted silly with his peers. He really liked the teachers, and he fit in with the other kids.

In turn, his mother made friends with the other mothers and started feeling more supported. She brought one of Mason's friends from his school to the program and created opportunities for her son to interact with other children outside the program by inviting kids over to her house.

Today, Mason still struggles academically in school, but not as much as before, and he has friends, both at the socialization program and at school. At age 16, he is no longer the angry teen I first met. In his first year in the program he went from failing a number of his classes to getting mostly Bs on his last report card. Also, Mason was diagnosed with autism when he was 10 years old, so the idea that all children on the spectrum need to have early intervention before a child attends kindergarten to turn their lives around is just not true for all children with autism spectrum disorders (ASD). Although it is important to have early intervention whenever possible, teachers and therapists at all stages can have a dramatic effect on the lives of children with autism. Children with high-level autism have an amazing capacity to improve when they get support, but they can also decline or stagnate when they do not get the supports they need. That is why it is important for teachers to know how to work with these children.

What Is This Book About?

This book is about how teachers can help children with high-level autism reach their full potential. Like many parents, teachers of children with autism often wonder: How can I help this student succeed in school alongside typically developing peers? What supports are available to help them function to their fullest abilities? What can I do to help this student become a happy, independent adult? These questions are difficult to answer, even regarding children who may be classified with high-functioning autism. At certain times, children with autism can come across as extremely intelligent, talented, or brave, and at other times they can seem immature, naive, or inexplicably irritating. Sometimes a child with autism can seem incredibly insightful and yet continue to put his or her pants on backwards. Occasionally these children become victims of bullies, and sometimes it is the other way around when children with ASD shout out angry words that come across as mean and unfiltered. It is difficult for teachers to determine what their autistic students need, and it is even more difficult for their typically developing peers to understand these children as they struggle to navigate the social world themselves.

In this book, we work to unravel the mystery of high-level autism for teachers, discussing what we know about children on the spectrum, describing the types of educational research that will help teachers to develop instruction, and providing suggestions for managing behavior. Although we talk about educating children at all ages in this book, we focus a bit more on older children, from about fourth grade through high school, because in the research world many people have already focused on young children. We also emphasize children's strengths rather than on how teachers can remediate their deficits. For example, many children with high-functioning autism can focus deeply for long periods of time, have well-defined interests, and have great memories for facts associated with their interests. In the world of technology, children who can focus for long periods of time have an advantage over those who cannot. Children who have passionate interests are actually lucky compared to those who have no passions. These strengths alone can move children forward if teachers are able to use them to their advantage.

We are not only authors, we are special education professors, teachers, and parents of children with special needs, and our experiences have led us to believe strongly that any child can grow up to live a happy and productive adult life depending on how he or she is treated and educated. The first author is a parent of a 15-year-old child with autism, and the second is a parent of two children with disabilities, one with learning disabilities (LD) and attention deficit disorder (ADD) and the other with Tourette's syndrome. Together, we share our stories and explain how our own experiences have helped to shape our professional work and community involvement. We know the types of questions teachers have about autistic children in their classes, not only from our professional experiences as special education professors and our personal experiences with our children and parent support groups, but also because we have been special and general education teachers ourselves. We will offer both our professional and personal views, and we will focus on evidence-based practices. We believe that all children should be treated with dignity and respect and educated to the best of our ability.

Although difficult, many typically developing children can overcome barriers from the outside, such as lack of financial support, lack of information, or traumatic family experiences (LePage, 1997; Levine & Nidiffer, 1995). For children with special needs, significant barriers imposed on them from the outside world will almost always result with adults on the spectrum who are not only unhappy, but who will have trouble living and working independently (Henniger & Taylor, 2013). These children need adults to help them through the system so they can develop as self-advocates, able to articulate what they need and eventually educate others about how they perceive the world around them.

In the first part of the book, we provide basic information about autism, focusing on questions that teachers want answered. We not only talk about what we know about autism and Asperger's, we also discuss topics that many people are curious about, such as, “Are children with ASD really more likely to have a parent who is an engineer?” or “Are there more children with autism born to wealthy, educated parents?” and “What characteristics do children with autism share?”

In the second section, we present and discuss various interventions that are now available for children with autism, what teachers should watch out for as they use these interventions, how they have been used in the past, and when and why they are considered evidence based.

In the third section, we share ideas regarding how teachers can help children with autism to reach their full potential. We talk about early childhood through high school and how teachers can help children as they move through different stages of development at different ages. We also present the complexities of some of the interventions used at different ages and explain how some of them are much more difficult to implement than one might imagine, and why.

In the final section of the book, we discuss various teaching strategies, including those that help children in all areas and in all grades. We also talk about the complexities of working with parents. Finally, we discuss educational placements, and how parents choose the best setting for their child.

Teaching Children With High-Level Autism: A New Population

Among our motivations to write this book is our belief that much of the information about children with high-level autism is often incomplete or inaccurate. The population of children we write about in this book can be considered a new population of children, and a new population of children living with autism.

In the 1990s, autism seemed to appear out of nowhere. Prior to the 1990s, only 1 in 10,000 children were born with autism; in the 1990s it became 1 in 166 children. Today in the United States that number has grown to 1 in 50 children who have been diagnosed with autism (Blumberg et al., 2013). This number represents an average between boys and girls, because boys are born with autism at a ratio of 5 to 1 compared to girls. Some of this increase in prevalence can be attributed to better diagnostic measures and access to professionals, but diagnosis alone does not account for the dramatic increase, and researchers are examining genetic and environmental factors that may help to explain it. Even if there were more children born with high-level autism before the spike in the 1990s who were not diagnosed accurately, these adults did not receive any of the services they needed as children, so they did not grow up in the same way as the children today. And, even for those children who were diagnosed properly in the past, they also did not receive access to the resources they needed because in the past professionals did not understand this population. Very little research has been conducted on the development or the potential of high-level children with autism compared to children with more severe autism. It would seem that those who were high on the spectrum must have gone through general education with few supports, and those just a bit lower on the spectrum must have been placed in special education with children who had more challenges.

In addition, we still don't know the reason for the huge spike in the number of babies being born with autism since the 1980s and 1990s. Whatever is causing the rate of autism to climb may also be changing the population. Thus, the population of children with autism that is now in school and college may not be the same as the adults with autism who were born before the 1980s and 1990s.

Most books about teaching children with autism lump all children with autism together, even though children higher on the spectrum are very different from those lower on the spectrum. When higher functioning children on the spectrum are combined with children who have classic autism (children who are more challenged), it is difficult to identify the best strategies for both groups. In the past, most instructional practices were developed for children with classic autism and were later modified to suit the needs of children higher on the spectrum. This might be a place to start, but these populations are so different that it would be like developing strategies for children with Down syndrome and then modifying them for children with learning disabilities—two groups with very different needs.

One of the reasons why this lumping of disparate groups was done in the past was because when children with autism were diagnosed at a very young age it was unclear what their level of functioning would be when they got older (i.e., low, moderate, or high). In addition, young children with high- and low-level autism are more similar than older children with high- and low-level autism. Nobody can predict what abilities children will develop over time. Just because a child cannot talk at age 2 does not mean that he or she will not talk by age 3. Just because a child has repetitive behaviors that seem out of control when he is 4 does not mean he won't be able to regulate those behaviors by the time he is 8. We do not know the potential of children with autism. This is true for typically developing children as well. However, children with autism have an even greater degree of variability in their abilities because autism is a spectrum disorder, representing a range of symptoms from very mild to severe or even profound.

Unlike their counterparts in the past, many of these children are born with high-functioning autism, which has also been called Asperger's or pervasive developmental disorders not otherwise specified (PDD-NOS). Today, more than 20 years after the spike in autism, we are watching as these children graduate from high school and enter college or try to find jobs. Some are doing well with simple accommodations and assistance, whereas others are joining the ranks of the unemployed and require a host of disability services, including independent living programs and work programs, as well as socialization, recreation, and mental health services.

Scientists, therapists, physicians, and parents are beginning to realize that overcoming autism-related challenges is not something that can only be addressed through early intervention via therapy in preschool and kindergarten. Autism is a condition that families must spend years addressing in order to prepare their children for adulthood.

Thus, as children with autism grow up it is very important to help them better understand the social world and to learn to regulate (when they choose) their autistic behaviors so they can make decisions about who they want to be when they are adults, rather than having those decisions imposed on them by ...