Seven Keys to Unlock Autism

Making Miracles in the Classroom

Elaine Hall, Diane Isaacs

• Publisher: Jossey-Bass
• Year: 2011
• Print ISBN: 9780470644096
• eBook ISBN: 9781118102695
• Edition: 1
• Topic: Education
• Subtopic: Inclusive Education

The acclaimed approach to helping children with autism, profiled in the award-winning documentary Autism: The Musical

This groundbreaking book outlines seven integrated keys for educators and parents to make meaningful connections with children on the autism spectrum. The book is based on the unique approach used by Elaine Hall and Diane Isaacs of The Miracle Project, a musical theater program for children with autism and their peers and siblings. The Miracle Project integrates traditional and creative therapies in an interactive, social dynamic. The book shows how to apply these effective strategies at school and at home to nurture kids' self-expression and social skills.

• Elaine Hall and The Miracle Project were profiled in the two-time Emmy Award-winning HBO documentary, Autism: The Musical
• SevenKeys reveals the seven-step program that has proven so successful for children in the Miracle Project
• After reading Seven Keys teachers and parents will better understand this puzzling disorder and be able to help children with autism draw connections and form more meaningful relationships

SevenKeys to Unlock Autism offers readers strategies for creating a personal skill set to make their encounters with autistic children as successful and rewarding as possible.

Part One: Autism 101

Primer

Autism Through a Different Lens

Autism is not a puzzle, nor a disease. Autism is a challenge, but certainly not a devastating one.

Trisha Van Berkel

There are still so many questions about the cause of autism—whether it is environmental, genetic, systemic, biochemical, or all of the above. With all the advanced medical research of autism, there is still not a found cause or cure for autism but rather recommendations of therapies, interventions, dietary adjustments, supplements, pharmaceuticals, or an individualized combination.

The prevailing symbol for autism is a puzzle piece, which indicates that there are many parts to the whole picture, and most often, not all the pieces are on the table. Although great strides have been made in diagnostic education, there remains a gray zone as to exactly what defines autism because the spectrum’s criteria are not etched in stone, nor are any two children with autism the same. So from cause to effect to cure, it remains a puzzle for experts, parents, and child alike.

We prefer to use the symbol of the butterfly, which starts out as a caterpillar, retreats into a chrysalis, and then emerges in its own time into something extraordinary. Yes, autism can be seen not as puzzle, problem, or disorder but as a wondrous and different way of being. It’s all in the perception.

In its most simple terms, autism is a neurological difference or disorganization that affects the development and functioning of the brain. Autism is usually distinguished with sensory-processing and motor-planning challenges (which in lay terms refers to the ability to remember a series of steps and execute them) as well as expressive and social issues that may affect speech and language, coordination, and learning.

With today’s diagnostic awareness, it is usually diagnosed around the age of eighteen months to two years, although symptoms can often be recognized in hindsight from birth. Key developmental milestones are missed by the child, and certain developmental skills such as language or eye contact are lost. Autism affects the child’s social and communication devel­opment most acutely. The cognitive profile of a child with autism is as unique as neurotypical children. In some cases, cognitive levels are affected and in others mental acumen may be heightened.

Sensory processing is how we organize our sensory input from our environment. Regulation of the senses can also be unpredictable and inconsistent for children with autism. For people with autism, the sounds, touch, smells, sights, and everything they hear may be perceived as distorted—often turned up very high or down very low. A conversation in the room next door can be amplified to a high volume while a person talking directly in front of the child can be zoned out. A simple lamp can appear like a powerful strobe to a child with visual hypersensitivity. The individual variations create a unique puzzle with hyper- or hyposensitivities to the environment, and it may change from one moment to another. Such irregulation of sensory input can redirect cognitive functions and communication abilities.

Stephen Shore, an adult autistic and professor at Adelphi University, refers to autism as a “different way of being.” Looked at this way, autism is neither good nor bad—it’s simply different, and it is the so-called typically developing (commonly referred to within the autism community as neurotypicals) who need to accept and learn about these differences.

The component of speech and language includes oral and nonverbal communication. When we communicate with one another we use receptive and expressive language. Receptive language refers to a person receiving language. It involves a level of cognition, which is what the person actually understands. Expressive language is the ability to communicate wants, needs, and responses—the ability to be understood. These areas work together to create a complete communication. The most obvious way to express language is through speech. However, children with autism often have challenges with speech, so other ways to communicate can be done through sign language, pointing to words and pictures on a communication board, or formulating written messages on a computer screen. People with autism may not be able to express themselves in a typical way, but they may have a high level of cognition or understanding. There are many individuals who have been thought to be mentally retarded due to their lack of communication skills, yet once they obtain a way to express themselves, their intellect is astonishingly developed and sometimes superior to their peers. Most “behaviors” are, in actuality, efforts to communicate. Barry Prizant, an internationally renowned speech and language pathologist, goes as far as to claim that “all behavior is communication.”

Motor processing and regulation is the ability to understand and process body movements. When a person is eating and puts food on a fork, the brain sends a signal that moves the hand toward the mouth. With people with autism, that movement may be delayed or their body may need additional support via prompts, reminders, or cues to execute the seemingly simple movement. Motor processing requires mental planning, which may be erratic or impaired with an individual with autism. It has been predicted that many children with autism have different wiring of the brain and body, with some synapses developed within the normal range and others overdeveloped or underdeveloped. This affects the think-plan-act pattern that occurs naturally for individuals who do not have autism.

The Different Viewpoints of Elaine and Diane

Although the autistic spectrum, with its myriad levels and categories, has been defined as a disability, we seek to find the abilities within each child. We have worked with so many unique children with autism and have found a gem inside each and every one. We are not here to minimize the challenges that are inherent with the condition. We acknowledge the difficulties that arise on a daily level. We do not bypass the many daunting questions that parents and teachers have about the child that do not appear to have immediate answers. What we choose to focus on is that every challenge has a silver lining, the double edge that can be as sweet as it is bitter. We honor the gifts of autism—not the outstanding talents that a small percentage display in art, music, or in-depth special interests—but the gifts of being honest, being in the moment, being highly sensitive. Mostly we have gratitude for the gifts we receive when we open our hearts to those who experience the world differently.

There is a myth that children with autism do not show empathy. We have found that quite to the contrary. Children with autism are among the most sensitive beings we have ever encountered. They may show their sensitivities in less-than-typical ways—but they don’t strive to be “normal.” Their bumper sticker should be “typical is overrated.”

A Brief History

Since about 2000, autism has become a highly visible thread in the fabric of our society. As with most things in life, this did not happen overnight. From its earliest days, autism has baffled the medical and scientific communities as they struggled to answer what it actually is as well as the complicated matters of how to define its diagnostic features, what causes it, and how to cure it. Today, we are fortunate to have an ongoing discussion of autism in scientific and medical circles and well-funded research. Folks who actually have autism are now teaching us about autism—but it wasn’t always this way. Here is a brief account of the highly dramatic and sometimes horror-filled evolution of the understanding of autism.

The word autism came into being in 1911 when it was first used by the Swiss psychiatrist Eugen Bleuler. Autism is based on the Greek word autos, meaning self and was applied to patients who seemed removed from social interaction. Bleuler loosely translated autism as an “escape from reality” and, in his understanding, autism overlapped with schizophrenia and mental retardation.

In the 1940s, Leo Kanner of Johns Hopkins University borrowed Bleuler’s label and diagnosed patients with autism based on emotional, antisocial, and isolating behaviors. At the same time, the Austrian scientist Hans Asperger coined the term Asperger’s to differentiate those children with autism who were highly verbal. Although these two diagnoses appeared in medical journals at this time, it would take decades before the medical profession would truly understand the diverse developmental symptoms and apply proper diagnostic techniques. In the meantime, the learning curve as to the what, why, and how to identify, address, and treat took many wrong turns. One such misguided discourse occurred under the leadership of Bruno Bettelheim, director of University of Chicago’s Orthogenic School, a home for disturbed children. In one study, he compared children with autism to feral children, as if children with autism shared animalistic behaviors like wolf babies in India. He attributed the incidence of such untamable behaviors to early emotional deprivation from the parents. Rather than seeing autism as the neurological condition it is, in his didactic publication, The Empty Fortress: Infantile Autism and the Birth of the Self (1967), he likened the parent of an autistic child to a “devouring witch, an infanticidal king, and an SS guard in a concentration camp,” and continued his parental blame game stating that “the precipitating factor in infantile autism is the parent’s wish that his child should not exist.”

Bettelheim blindly led the understanding of autism into darkness and horror. He was a follower of Freud, the father of modern psychology, who believed that all psychological issues stemmed from childhood trauma. Building on the misguided systemic beliefs of Bettelheim, Dr. Kanner witnessed a consistent coldness on the part of the mothers, and although he believed autism to be somewhat innate in the child, he perpetuated the myth of icy parenting as the source of autism for years to follow, coining the label refrigerator mother.

Fortunately, parent advocacy groups with scientific support have since debunked such a ridiculous premise. Still, the stigma it created was not easily dissipated and parental guilt for not doing enough for their atypically developing child remains commonplace today. Even now, and all too often, blame for autism is directed at the child’s parents. This has taken on a different form in that parents now do so many interventions with their children in an attempt to fix them and then blame themselves when their children are not “cured.”

The 1960s and 1970s were rife with more missteps and misunderstandings. The medical community concentrated their research on medications to cure autism. Experimental and oftentimes radical drugs were administered, including the psychedelic LSD. Neurological treatments such as electric shock therapy were used. Children were literally tied down to control their impulsive behaviors and locked in closets. In 1974, Psychology Today cited one doctor for his method of dealing with the problems of children with autism: “We spank them hard.”

Throughout these decades, the primary objective of psy­chologists, therapists, and teachers was to behaviorally control children with autism through rigid and severe reward-and-consequence tactics. It had not yet occurred to most members of the medical profession that autism was something more than what they mistook it for: a form of mental retardation and social dysfunction.

In the 1970s, the true pioneers of autism reform emerged with new therapeutic models to address autism. Their work is offered through therapists and schools today:

• Ivar Lovaas, a clinical psychologist at UCLA, began to dig deeper into the mystery of autism and came up with what is called ABA (applied behavioral analysis). He was one of the first to provide evidence that the behavior of autistic children could be modified through breaking down goals into small manageable tasks.
• Stanley Greenspan, a renowned theoretician, diagnostician, and clinician of child development, built the DIR (developmental, individual-difference, relationship-based) approach, which focuses on emotional and relationship development techniques. His method calls for following the child’s lead to establish a trusting relationship between the child and parent, teacher, or therapist.
• Eric Schopler, a professor of psychiatry and psychology at the University of North Carolina and a pioneer in humane and effective treatment of autism protocols, designed an educational school model with a structured and visual environment he called TEACH (treatment and education of autistic and related communication-handicapped children).
• Barry Prizant and his colleagues developed the SCERTS (social communication, emotional regulation, and transactional support) model, which is an innovative educational model for working with children with ASD and their families by building competence in these areas.
• RDI (relationship development intervention) is a therapeutic training by Steven Gutstein, a psychologist with experience in traditional behavioral approaches for treatment, who saw that many of his children lacked the ability to connect on an emotional level. He created a family-based therapeutic approach to train parents to guide the cognitive, social, and emotional development of their own child. Through the framework of a unique, dynamic intelligent curriculum, children become motivated to seek out new challenges and overcome their fear of change.

All of these protocols are still highly regarded and used today. Their common denominator is to get a jumpstart with early intervention and to recognize the individual nature of each child.

Often parents will be committed to one protocol or another. Some of these programs require 100 percent allegiance to following their procedures. However, the National Research Council (2001) has recognized that there is no evidence that any one categorical approach is more effective than other approaches and also that approaches are likely to overlap. The committee recommended that children with ASD engage in programs that provide social instruction across a variety of settings.

Usually, a combination of many therapies is required. It may include sensory integration, physical therapy, fine and gross motor development, speech and language, play therapy, occupational therapy, signed speech, cognitive therapy, behavioral therapy, as well as other approaches such as a casein-gluten free diet, natural supplements, pharmacology, and acupuncture.

Inspirational Stories

The history of autism contains many inspiring stories. In the early 1950s, Temple Grandin was diagnosed with autism and brain damage as a child. Her mother, Eustacia Cutler, found teachers to work with her starting in nursery school. Temple was blessed to have supportive mentors who looked beyond her disabilities and recognized her potential. Not only did she learn to speak, but she also developed into an accomplished student. Ultimately, she transc...

Table of contents

• Cover
• Praise for Seven Keys to Unlock Autism
• Title page
• Copyright page
• Dedication
• Acknowledgments
• About the Authors
• About The Miracle Project
• Foreword
• Introduction: It Starts with You
• Part One: Autism 101
• Part Two: The Seven Keys
• Part Three: Appendixes
• Index
• Download CD/DVD content