Engaging Autism

Introduction

We Can Do Better

When the pediatrician told Marissa that her beautiful son Sean was autistic, her heart sank to the floor. It took days for Marissa and her husband, John, to confront this diagnosis and to realize its dramatic implications for their beloved, bright-eyed two-year-old child and for their own life together. When they did, and after they had done some research on autism and autistic spectrum disorders (ASDs), the weight in their hearts did not lighten. The information about ASD they gleaned from books and from the Internet was overwhelming, with many different points of view and treatment options. They had to learn a whole new vocabulary just to understand what was going on with Sean, and in the midst of their grief at the diagnosis, they found this very hard to do. Most disturbing of all, they weren’t sure they were getting the right advice on how to treat their son. They wanted a treatment program that would give him the best possible chance to make progress and, they hoped, experience friendship, school, birthday parties, dating, sports, college, a career, and someday, having and raising children of his own.

The first specialist whom Marissa and John consulted told the couple that Sean would probably never be able to relate to other people’s feelings or to think creatively. The best they could expect was for Sean to learn to behave in socially acceptable ways through a treatment approach that focused on his symptoms and behavior. For example, he could learn to memorize scripted phrases to say to another child, and his parents could encourage him to make eye contact with them by rewarding him with food. In the face of this advice, the couple felt hopeless and helpless. They believed their son had more potential than that, and they wanted him to want to relate to them and to think for himself.

Many parents of children diagnosed with ASD feel like Marissa and John. They want a program that will consider their child as an individual, offer personalized treatment, and unleash the child’s potential for meaningful communication and relationships. Such parents also want to be a part of their child’s treatment plan. They want to help and to hope. This book is written with such parents—and their children’s other caregivers—in mind. It presents an approach that can fundamentally change assumptions about autism and ASD and vastly improve the outlook for children with these disorders.

For sixty years, treatments for ASD have focused on the symptoms of the condition, rather than on the underlying problems. As a result, goals for individual children have often been limited to changes in behavior, and the long-term prognosis for many children with the disorder has been deeply pessimistic. Prevailing assumptions about the nature of autism have limited the kind of progress and future expected for these children.

Estimates for the number of children with some form of ASD range as high as 1 in 166. Better futures are now possible for these children. With a comprehensive, individualized approach to assessment and treatment that focuses on the building blocks of healthy development, as described in the following chapters, many children diagnosed with ASD have made progress that goes far beyond what is traditionally described as “high functioning.” The formal name for this new approach is the developmental, individual-difference, relationship-based (DIR) model. It is also often referred to as the “Floortime” approach. Floortime is actually a basic strategy within the DIR model. This book explains the DIR approach for parents, professionals, and other caregivers of children with ASD.

The goal of treatment within the DIR/Floortime model is to build foundations for healthy development, rather than to work only on surface behavior and symptoms. With this approach, children learn to master critical abilities missed or derailed along their developmental path—namely, the ability to relate to others with warmth and pleasure, communicate purposefully and meaningfully (first with gestures and then often with words), and, to varying degrees, think logically and creatively. A significant number of children treated in this way have broken new ground, mastering abilities formerly thought unattainable by children with ASD. They have formed warm, intimate relationships with family and peers and have developed sophisticated verbal skills. They not only have mastered academics but also intellectual skills, such as spontaneous thinking, making and understanding inferences, and empathizing with others.

One of the children who has benefited from the DIR approach is a patient we will call Josh. After Josh was diagnosed with autism, his parents decided not to accept the pessimistic prognosis he was given and started their three-year-old on a comprehensive therapeutic program based on the DIR model. Now, at age seventeen, Josh is a happy student in a demanding, regular private school and is exploring possible colleges. He has lots of friends and even a budding romance. He can discuss his own feelings and is intuitive (perhaps even gifted) at reading and understanding the feelings of others. He can discuss and write logical, coherent essays about a variety of topics. According to his parents, his teachers and peers are not aware of his history of autism and see him as a warm, talented teenager.

Another example is David. At two and a half years old, he was self-absorbed, showing no eye contact or apparent pleasure when relating to his parents or his peers. During his evaluation, David spent most of his time in repetitive and self-stimulatory behavior, such as reciting numbers in a rote sequence, spinning and jumping around aimlessly and randomly, and lining up toys and cars, while making little grunts. In many programs, such symptoms would result in a diagnosis with a limited prognosis and a treatment plan focused mainly on stopping this behavior.

However, we saw that David also had strengths: he was able, when extremely motivated, to show what he wanted; to show affection with some hugs; imitate actions, sounds, and words; and to recognize pictures and shapes. We created a comprehensive treatment program based on his unique developmental profile. David overreacted to sound and touch, so we used soft, low-pitched sounds and words in our interactions with him. Because he liked to repeat letters (he had a great memory), we used this to engage him in play. For example, we “made mistakes” such as repeating his “A-B-C” with “C-A-B?” In response, he shook his head and soon learned to say the word “no.” Through such games, he became engaged and gradually began talking more purposefully and creatively. After a few years of progress, he enrolled in a regular school, where he eventually excelled in reading and English as well as math. Now he has a number of close friends, a sense of humor, and insights into other people’s feelings; his remaining challenges, such as difficulty with fine motor activities and a tendency to become anxious and argumentative in competitive situations, are relatively minor.

Because of a lack of studies on representative populations, we don’t know how many children with ASD are in the subgroup that DIR/ Floortime has helped reach these levels of thinking and social skills. Of the children we have worked with, however, it is a sizable percentage (see Appendix A). We have also observed that the type of treatment that produces better-than-expected progress in this subgroup also helps children who make slower progress to become warmer, more engaged, and more communicative and reach a higher level of thinking than would have been expected in the past.

Harold, a four-and-a-half-year-old boy with neurological challenges, progressed only very slowly to imitating sounds and words, even with a comprehensive program designed to help him learn oral motor skills. He could say one or two words spontaneously when angry or insistent on getting something, but otherwise had to be pressed to speak. Every utterance was extremely difficult, and he would sometimes stare at a caregiver’s mouth to try and form the same mouth movements. His severe dyspraxia (low muscle tone) also interfered with his engaging in pretend play, and he could not use toys creatively, although he did enjoy running around the school yard and the pool with other children.

In the second year of treatment, Harold became able to communicate about what he wanted, such as by pulling his dad over to the refrigerator to find hot dogs. He could even retrieve a few words at such moments—“Hot dog!” and “French fries!” Over time, Harold tuned into more of what was going on around him, using gestures and simple words and making some progress learning letters and numbers. He loved lots of movement and, instead of wandering aimlessly, could now exchange a number of emotional expressions and gestures as part of getting a horsy ride on his father’s back or going up and down “like an airplane.” As we work with him now, he is still limited in his use of imagination, but has become warm, interactive, and purposeful. We expect his gradual and steady progress to continue. The key point about children like Harold is that, in spite of their neurological challenges, they can learn to relate with great joy and warmth and acquire the most important skills of meaningful communication and problem solving.

Outcomes like these cannot be achieved by programs that work only on symptoms or that accept a fixed prognosis of the child’s future potential. Many programs that focus predominantly on symptoms or behaviors rely on the troubling assumption that many children with ASD cannot ever acquire skills for truly intimate relating, empathy, and creative problem-solving.

In contrast, the developmental model described in this book focuses on the underlying deficits that lead to autistic symptoms, rather than only on the symptoms themselves. With help in overcoming these deficits, the child can follow the developmental progression that leads to enjoying relationships and engaging in meaningful communication.

Common wisdom once held that 80 percent of children diagnosed with ASD would still show the symptoms of these disorders many years later. Kathy Lord at the University of Michigan is showing that the old data no longer hold. Our preliminary studies suggest that the prognosis for autistic spectrum disorders must take into account the intervention approach. (Appendix A of this book covers current research in more detail.)

Regional networks of DIR practitioners are now available in most cities and states in the United States and in many cities abroad. The DIR/Floortime model was recently cited by the National Academies of Science (NAS) in their report Educating Children with Autism as one of the main comprehensive models supported by current research. The NAS also acknowledged that modern approaches are moving away from conditioning specific behaviors and focusing more and more on naturalistic (or incidental) learning, fostering the building blocks of healthy development.

In addition, a large field study of the DIR/Floortime model’s emotional milestones, conducted by the Psychological Corporation as part of its development of the new Bayley Scales for Infant and Early Childhood Assessment, showed that these milestones could differentiate infants and young children with developmental and emotional disorders from those without such problems. (The Bayley Scales are the most widely used tool for developmental assessment in infancy and early childhood in the world.) The study also validated the ages at which the DIR model predicts mastery of these emotional competencies and demonstrated that—as hypothesized in the model—mastery of the early stages of emotional interaction is associated with language and thinking skills. The results were so encouraging that the Psychological Corporation published the DIR emotional milestones as the “Greenspan Social-Emotional Growth Chart,” to be used as a separate assessment tool as well as a component of the new Bayley Scales kit.

In the chapters that follow, we describe the DIR/Floortime approach and show how to enter a child’s world and bring her or him into a shared world of relating, communicating, and thinking. Part I presents a new, more accurate way of defining autism and ASD and observing a child’s earliest signs, and describes goals for working with children with ASD and other special needs within the DIR framework. Part II shows how families can take the lead in working with their children toward these goals. In Part III we describe the DIR model’s Floortime technique and illustrate it in various contexts. Part IV looks at how to create a comprehensive treatment plan and how school environments can be modified to support treatment plans. In Part V we address working with specific problems in greater depth. Appendices A–C present research that supports the DIR model.

Note: The profiles of children at the beginning of each chapter are composites of children we have treated or whose parents have contacted us with questions.

Part I

Is the child having trouble with establishing intimacy and warmth? Does the child seek out those adults he is really comfortable with, such as a parent or key caregiver? If so, does he show enjoyment of closeness in that relationship?

2.Does the child communicate with gestures and emotional expressions? Does she engage in a continuous flow of back-and-forth emotional signaling with smiles, frowns, head nods, and other interactive gestures?

3.When the child begins using words, does he use them meaningfully? Are the words or symbols invested with emotion or desire, such as, “Mommy, I love you” or “I want that juice,” rather than “This is a table” or “This is a chair”?

If these three basic abilities—establishing closeness, exchanging emotional gestures in a continuous way, and using emerging words or symbols with emotional intent—are not present, we should consider whether the child is showing signs of an autistic spectrum disorder. The degree to which these three core processes or abilities are not functioning in an age-expected manner may indicate, at least initially, the degree of autism affecting the child.

Secondary Symptoms

There are also secondary symptoms, such as the tendency to perseverate (for example, lining up objects repetitively), flap hands, or self-stimulate (for example, staring at a fan, rubbing a particular spot on the floor, and so forth). Similarly, repeating words in a scripted way or reciting whole books that have been read to the child or whole TV shows she has seen are examples of the disorder’s secondary components. Because such symptoms are seen in a number of other kinds of developmental disorders and thus are not specific to autism, they should not be used as the primary criteria for making a diagnosis.

Children who have sensory processing problems, such as being overreactive to touch or sound, but who otherwise have excellent language and relationship skills and can read and respond to emotional signaling, may be self-stimulatory or perseverative because they get overloaded; they may be trying to regulate themselves. These secondary phenomena can also be seen in children with severe motor planning problems. Sometimes children with language deficits or very circumscribed cognitive or learning difficulties may also show some of these symptoms.

Our new understanding of ASD incorporates observed symptoms but organizes this information from a developmentally based perspective. In this new way of defining ASD, the secondary symptoms are kinds of behavior that stem from the core deficits. Some children, for example, lack the ability to engage in what we call “shared social problem-solving” with their toys and to play with them in a flexible way with parents or peers. They are unable to show their toy to a care-giver, flash a big smile, and gesture for a reaction. Rather, they tend to just line up their toys. Thus, the symptoms reflect and result from a lack of mastering the core abilities. Having a narrow range of interests is another such symptom. Because children expand their range of interests through communication with others, when they don’t use gestures in continuing interactions to indicate their wishes and needs, their range of interests remains narrow.

Symptoms such as these may indicate a broader pattern of an ASD, but should not be the sole basis of a diagnosis. The key to making a proper diagnosis—and to knowing what a child’s real problems are—is to look at the degree to which the child manifests the three fundamental abilities described above. One of the main reasons for the many misdiagnoses of ASD that are made is that not enough time is spent watching the child interact with a parent or other trusted caregiver. In many evaluations, children are in fact separated from parents and challenged to perform various types of developmental tests in a way that fails to take into account the child’s individual differences in processing information. The children thus become stressed and confused, which tends to bring out their lowest level of ability. To make a proper diagnosis, a practitioner also has to see children at their very best; a diagnosis should be based on the whole range of the child’s abilities.

Varied Rates of Progress

Over the past couple of decades, children diagnosed with ASD have shown varied levels of progress. Some, described as “high functioning,” acquire sufficient language to master a variety of academic subjects such as reading and math (often excelling in memory-based learning), but may nonetheless remain somewhat socially rigid and emotionally isolated. Other children make only very modest gains in language and academic skills, learning to gesture and use selective words. Still others make very little progress. They remain self-absorbed, without functional language, and rely on repetitive behaviors and self-stimulation to cope with their environments.

Yet there are others, such as those described in the introduction, who make unusual progress, advancing significantly beyond the “high functioning” level. Through a treatment program based on the DIR model, they have developed intimate relationships with their families and friendships with peers and have learned to think and communicate flexibly and creatively.

For these reasons, ASD should be viewed as dynamic, not static. A static trait is fixed—the child will be this way no matter what the environment, context, or circumstances. A child’s blue eyes are unlikely to change over time or due to changing circumstances; eye color is a relatively fixed trait. Dynamic traits, on the other hand—associated with many factors, including feelings and emotions—are changeable. The three core abilities identified above are dynamic processes: they can and do change—more for some children than for others, and more with certain kinds of treatment programs than with others.

Professionals disagree as to the degree to which these abilities can be favorably influenced, both in general and in any particular child. Our view is that these abilities can change significantly and that a prognosis can be determined by only one factor—the child’s actual progress. Many factors—including home environment, treatment program, and maturation of the child’s nervous system—influence his or her progress. The only reliable indicator is the child’s learning curve over time. The steeper the slope, the better.

Recent studies of how experience, at all stages of life, can change the structure and function of the brain are giving increasing support to the changes seen in autistic children after DIR/Floortime treatment. Newer brain imaging techniques are documenting these changes. They are beginning to offer concrete evidence of the way certain experiences can affect not only the child’s ability to relate, communicate, and think, but also the very architecture of the brain.

If there is no progress at all (which would seem to confirm the validity of earlier views of autism and ASD), it is often because the child is not receiving an optimal program of intervention at home, at school, and with therapists. That learning curve can often be improved by providing the child the right help. That slope of the learning curve may change from year to year depending on various factors; the key thing is continual steady progress. So rather than trying to predict progress based on some fixed diagnostic criteria, the idea is to create the optimal program, then watch the child learn and enjoy his progress.

Treatment Options

Available treatment options for autism and ASDs are based on certain underlying assumptions. The DIR/Floortime model is based on the assumption that we can favorably influence the core developmental foundations for relating, thinking, and communicating, even for children with severe problems, by working with the their emotions, or affect. We describe this model in detail in Chapter 4.

For many years, the behavioral model—which did help some children fit into school and home life—was the only model. Today, with the insights we now have into the way the nervous system develops and the way children acquire their core abilities, deeper change and greater opportunities to lead rich, full lives are possible for children with ASD. When practitioners build a healthy developmental foundation, children may also overcome symptoms. When appropriate, therapists may incorporate behavioral approaches into a DIR foundation-building approach: the DIR model is not a single therapy or intervention program; it’s a way of understanding how each child is unique and designing and orchestrating a comprehensive treatment program. Based on the needs of the child, the program may have various elements.

Clinicians can also incorporate a number of relationship-based approaches into a broader DIR model by following three principles while engaging in particular activities or exercises. These principles are tailoring interactions to the child’s nervous system, building spontaneous interactions, and harnessing the child’s natural interests and emotions as part of these interactions. Many practitioners—especially in speech and language pathology, occupational and physical therapy, education, and psychology—have been exploring dynamic interactive approaches. They are demonstrating that interactions geared to a child’s unique neurological profile can help the child relate, think, and communicate. For example, oral-motor exercises can help with preverbal vocalizing, gesturing, and imitation, thus facilitating language development. Learning to decode sounds can help “phonemic awareness,” a basis for reading.

Yet in spite of this expanding approach, practitioners still tend to focus on symptoms and on only a few of the underlying processing differences. Even though emerging evidence favors a dynamic model, the vast majority of children with ASD have access only to older, static approaches that deal insufficiently with each child’s unique developmental profile and potential for growth. Despite their limited success, many of these approaches have remained unchanged for many years.

The following are examples of widely used approaches that are not fully based on dynamic developmental concepts and therefore have not been sufficiently helpful to most children with ASD:

•Limited educational programs that use repetitive exercises to teach isolated skills, such as matching shapes, rather than essential developmental building blocks. Such exercises have not been shown to be an essential foundation for cognitive or social capacities or auditory processing and language capacities, and higher level thinking skills.

•Behavioral approaches that work predominantly with surface behavior while paying less attention to relationships, individual processing differences, and the building block of thinking.

•Biomedical approaches that are not part of a comprehensive program. They may involve various diagnostic procedures and medication without constructing a complementary, comprehensive intervention program. A diagnostician may give parents their child’s diagnosis, recommend additional tests and/or a particular medication, and then simply tell the parents to contact representatives of their local special education program.

Many parents and programs are combining elements from naturalistic approaches such as DIR/Floortime and more structural behavioral or educational ones, but without a true developmental road map to orchestrate the program. The DIR model provides such a road map. As will be seen, it shows how to use a range of interventions in a truly integrated manner to promote mastery of the developmental capacities needed for relating, communicating, and thinking (see Chapter 20). Our research has shown that relating, communicating, and thinking include such well-documented capacities as using language socially, joint attention (playing with a toy and showing it to Dad), theory of mind (understanding the feelings and ideas of another person), reading complex emotional and social signals, and making inferences (creating new ideas). These, we have shown, stem from mastery of a number of more basic building blocks that will be described in Chapters 3 and 4 and subsequent sections (see also, Appendix B). These capacities are not only the foundations of healthy development, they are the very abilities that are compromised in children with autism. That’s why we developed a comprehensive model, the DIR/Floortime approach, which uses our knowledge of human development to orchestrate the different components of the intervention program. As will be described in the next section, each step along a child’s developmental pathway offers an opportunity to help strengthen the child’s core abilities, rather than allowing those abilities to further erode. If a four-month-old child is beginning to show a lack of sustained pleasure and joy, or a four-year-old has not fully mastered joyful relating, we can address the problem at that point rather than waiting. Similarly, we can help a five-year-old use language meaningfully and play creatively. We can look at what biological or environmental factors are contributing to the problem. While it is best to deal with challenges as early as possible, it is never too late if we work on true developmental foundations. We can take a proactive approach. The remaining chapters in Part I look in more detail at the myths surrounding autism and ASD and the misdiagnoses that result from these myths. We explain how to identify the signs of ASD—in both infants and children—and how caretakers can address the problems before symptoms appear. Finally, we describe the DIR approach to treating ASD.