Movement and Relationship in Autism
Movement Challenges in the Early Stages of Development
A year-end review of all that 1995 brought our way: Philip Teitelbaum, Stanley Greenspan, Ralph Maurer, Anne Donnellan, Martha Leary, Jayne Miller, Barbara and Ruth Moran, Kathy Lissner-Grant...and a cast of thousands!
Movement in autism has been studied, at best, sporadically and, for the most part, impressionistically. Many claim to see no particular movement problems, and even speak of the "unusual grace" with which some children with autism seem to waft through space. Others recognize significant movement differences but, lacking a common scientific vocabulary in which to code their observations, have difficulty sharing them in ways that fellow researchers can build upon.
Dr. Philip Teitelbaum, Professor in the Department of Psychology at the University of Florida at Gainsville and an eminent member of the National Academy of Sciences, has now come forward to fill that gap in our ability to describe the components of movement in autism. Working with his colleague, Autism National Committee Board Member Ralph Maurer, MD, Dr. Teitelbaum has viewed enough tapes of children with autism to convince himself that movement problems are present and deserving of further study.
In a lecture on "Components of Walking in Parkinsonians, Autistics, and Normal Children," delivered at the NIMH Neuroscience Center at St. Elizabeth's Hospital on May 15, 1995, and again in a featured presentation to the Third Annual Conference of the Autism National Committee on October 13, 1995, he outlined his preliminary observations and the pioneering work yet to be done.
There are two impediments, Dr. Teitelbaum explained, to recognizing movement problems in autism. The first is that "the act gets done" -- that is, the child succeeds in crossing the room, climbing the ladder, etcetera, so there is nothing immediately recognizable as a failed attempt to perform an action. Only to the trained or very observant eye is it clear that the components of that movement are poorly integrated or disconnected.
Second, our bias has been the medical bias: to look for and work on what's missing via medications and related interventions. "As a psychologist," explained Dr. Teitelbaum, "I look for what remains. We must study the subcomponents of movement, must see the complementarity between what's missing and what remains."
Teitelbaum finds a major key to the study of movement in autism and Parkinsonism in the concept of allied reflexes, an "old concept, but virtually no one uses it." Allied reflexes work together to achieve an end, as when the act of swinging our arms while walking actually increases the amplitude of our gait (try it next time you're feeling tired and moving slow!). Allied reflexes can also spread, as when the mouth and eyes close together when one receives an aversive stimulus (in evolutionary terms, this spread has defensive and protective value).
Allied reflexes can indirectly trigger movements. For example, a patient with Parkinson's may be unable to turn over until he reaches for an offered hand, or may become "stuck" unless there are lines on the floor to trigger and chain to walking. Clearly, knowledge of how these reflexes work can prove invaluable in helping people to accomplish actions which they are no longer able to initiate directly.
Although Dr. Teitelbaum did not digress into this topic, it is worth noting that the work of occupational therapists, which depends largely on the exploitation of allied reflexes, is just beginning to be appreciated for its potential applications to the problems people with autism face in areas such as stopping, starting and transitioning activities, as well as in social interactions.
Teitelbaum reviewed videos of a typical infant learning to walk, noting the discontinuous mode of shifting of weight, with all action in the upper leg. It is critical, he explained, to observe what is doing the movement vs. what is being moved: although the entire leg is moving, the infant is only able to control the action of the upper leg. Considering the gait of many people with autism, he found similarities in the leg movements both to beginning walkers and to people with Parkinson's, whose disability can be considered a degeneration to a more shuffling, infantile mode of weight shifting.
He also noted with curiosity that the superimposition of movements involved in turning while continuing to walk is a form of integration which seems to be missing in many people with autism.
Dr. Teitelbaum drew attention to the way in which the arms of beginning walkers are held up, gradually lowering as they and their gait mature. The arms of many people with autism are also held up while walking, suggesting motor development which has become arrested at an early stage. It is common to see one arm held significantly higher than the other, further suggesting uneven lateral development, with the sides of the body at different developmental levels.
At the Autism National Committee's Annual Conference, Dr. Teitelbaum unveiled a striking new piece of evidence: an examination of videotapes of an undiagnosed infant turning over from stomach to back. Significant movement problems were clearly observable at that early stage, and the child was later diagnosed with autism. It is unusual to find useful film sequences from such an early age, and the generosity of the family who shared these videos was greatly appreciated.
To combat "the illusion of the obvious" which has held back research into movement, Dr. Teitelbaum is working to computerize a system for the analysis of movement disorders. His basis is the Eshkol-Wachman Analysis System of notation, which employs only 11 symbols, in a variety of combinations, to encompass all of behavior.
Even at this early stage of his work, Teitelbaum is discovering that he can recognize a child who will later be labeled with autism/PDD, on the basis of movement problems alone, at one year of age, and there are indications that these problems may be detected even earlier. While this has important practical implications for the start of early intervention, it raises fundamental issues which may prove to be more important still: What is happening in the development of that infant which precedes the onset of the usual diagnostic indicators around speech, language, and social interaction? What complex and cumulative role do movement disorders play in the cognitive, linguistic, and social development of the young child who is going "off the track"? And how, then, can we best intervene?
Answers to these questions have been emerging in the work of Stanley Greenspan, MD, Clinical Professor of Psychiatry, Behavioral Sciences and Pediatrics at Goerge Washington University Medical Center and a founder and former president of the National Center for Clinical-Infant Programs. Dr. Greenspan's approach to young children with "multi-system developmental disorders" is based on the assumption that such children fail to master early steps in the normal developmental sequence, yet can rebuild this sequence if caregivers concentrate on intensive relationship-building and appropriate play activities.
Greenspan has emphasized that an infant's development proceeds by easily-recognizable stages. The typical newborn learns to regulate its sensory system and shows interest in the world. A stage of attachment/relationship, which involves synchronous motor movements, is reached by about five months, followed by the development of intentional two- way communications by approximately nine months of age.
At about 13-18 months, we should begin to see the emergence of a complex sense of self, manifested by the infant's attempts to organize complex emotion and behavior to convey a distinct intention or need. In an early diagnosis of autism/PDD, the first sign of trouble is often that this stage is missing. For example, instead of signaling to Mommy that she wants to have the toy or cookie that's out of reach, the child may withdraw, become perseverative, or tantrum while the parent searches desperately for the unconveyed reason.
In most children, Greenspan notes, synchronous patterns of movement support this early communicative engagement with their caretaker, but in children developing the autism/PDD syndrome this meaningful flow of movement seems to be absent. In addition to these problems in motor planning, Greenspan finds that sensory modulation and often auditory processing problems are characteristic of these young children (the term "movement," as used by neurologists, includes these internal movements of sensory and auditory regulation). If such a child is not helped to find manageable, rewarding interactions, he or she will begin to "shut down" the baffling environmental input and a form of self-imposed sensory deprivation will begin to set in.
These observations of Dr. Greenspan's bear a striking similarity to the remarks presented by Ralph Maurer, MD, Associate Professor of Psychiatry at the University of Florida at Gainsville and a Director of the Autism National Committee, in his April 1995 presentation to the National Institutes of Health Autism: The State of the Science Conference. "Autism is a disorder of relationship," states Maurer, "and movement is important in relationship. If you watch people interacting...you will see synchronies and symmetries in their movements, as if they are partners in a dance. But if you watch people with autism in interactions you will see asynchronies and asymmetries. If a dance is fundamental to relationship, there is something fundamentally wrong with the ability of people with autism to engage in it....Autistic children from an early age fail this dance of relationship, and the idea that a shared spatial and temporal scaffold is the foundation of it, and that the nervous system in autism can't cooperate to build that scaffold, makes a lot of sense..."
"To follow this trail (of research) has important implications for intervention. Some people have an almost magical ability to pull relationship out of autistic children, and to foster development. What they do is intuitive; they can't explain it, and if they try they usually use the vocabulary of music or dance. I suspect that what they do is compensate for the children's deficiencies in this dance of relationship, like Arthur Murray instructors, and then work from within the dance to expand the child's world, like mothers do with infants."
Dr. Greenspan has spent decades studying that "magical ability to pull relationship out of autistic children," and coaching parents so that they too can function "like Arthur Murray instructors" in the dance of relationship. He was invited to present his developmentally-based early intervention approach in a day- long workshop held on November 17 in Conshohocken, his second workshop in Pennsylvania in 1995.
Drawing on his wide experience and using a variety of videotaped examples, Dr. Greenspan demonstrated the intensive method which he calls "floor time" -- time which the caregivers, generally the child's parents, spend entering the child's activities and following the child's lead. If the child wants to line up cars in a row or twirl a top, the parents are coached to join the child in his or her preferred activity (with the intent of developing this action into an affective, or emotion- driven, interaction) rather than demanding that the child join them in their preferred activity (a process which, at best, will produce no more than rote action and reaction).
Starting with this mutual, shared engagement, the parents are assisted to draw the child into increasingly more complex interactions, a process known as "opening and closing circles of communication" (a phrase which Dr. Maurer would appreciate for its "folk dance" imagery). For example, the parent may begin to take turns with the child who is lining up his cars, until the child begins to expect and wait for his parent's turn. Then, the parent may "accidentally" place a car in the wrong spot, tempting the child to open and close a circle of communication as he corrects this ridiculous error. (One of the abiding joys of childhood, too often denied to children with disabilities, is demonstrating that you are smarter than your parent!) Of course, the larger and very serious game being played by the parent is to turn even what looks like random behavior into intentional acts that get a specific response, and thereby become the means of nudging the child's crucial affective development back on track.
Greenspan offered workshop attendees a number of practical suggestions for fostering relationship and appropriate, well- integrated development:
1. Follow the child's lead. Don't worry about "correcting" or "extinguishing" the child's fixations: instead, use them and build on them.
2. Take your time. Build a strong communication foundation. Recognize that quality of learning is more important than speed.
3. Help the child into spontaneous, interactive situations: even if they seem not to want them, they do! They just can't set these situations up for themselves, and depend on their caregivers for help.
Learning reciprocity is the first order of business, cautioned Greenspan, not learning compliance (e.g. how to sit in a chair or in circle time). The goal is to move the child from one developmental stage to another, not to copy or simulate "normal" behavior or an "education-like" environment. Too often we presume that intervention "work" is being done only when we see a child seated in a chair doing school-type busy-work, yet this focus is likely to be develop- mentally inappropriate, exacerbating the child's behavioral rigidity while neglecting the vital importance of relationships and reciprocity for getting development back on track.
Dr. Greenspan took great care to dismiss two outmoded approaches to behavior, the Syndrome Approach and the Behavioral Approach. The Syndrome Approach, epitomized by the classic "stick figure" chart of autism symptoms and by the trait lists in the Diagnostic and Statistical Manual of Mental Disorders (DSM), now in its fourth edition, is built on the assumption that those who have a syndrome (e.g. autism, Downs, fragile x) are more similar than different. This is completely false, states Greenspan, since an individual in any of those categories is likely to have as much in common with a child outside that category as with another child within it. Thus there is no scientific rationale for those programs which claim to have an "autism behavior plan," or "fragile x behavior plan," or for educational grouping according to syndrome labels. The Syndrome Approach is also based on the fallacious assumption that clusters of symptoms have a permanence over time when in fact diagnosticians are often engaging in a confusing reification of developmental stages.
While the Syndrome Approach at least suggests that symptoms cluster according to some logical principle (generally unspecified), the Behavioral Approach treats symptoms as unrelated, discrete pieces of behavior controlled by independent things in the environment. Developmental history therefore becomes unimportant; all important data is considered to be in the present and visible "on the surface."
The result, observes Greenspan, is interventions which skip steps on the developmental ladder in order to rapidly copy or simulate "normal" behavior, and which thereby promote rigidity rather than spontaneity, create prompt- dependence, and overlook family dynamics to such a degree that they often become, not a support, but a source of family stress which works against the vital relationship-building job which parents need to accomplish.
To counter these two dead-end approaches, Dr. Greenspan proposes an Individual/ Developmental Approach to behavior. This approach involves an understanding of develop- mental patterns and how they relate to each child's unique developmental profile. It is an approach which focuses on individual differences rather than on similarities and "group membership." Finally, and most hearteningly, it is an approach which has proven successful in fostering relationship through natural situations and appropriate affect. The biological challenges of autism/PDD, asserts Greenspan, are not in the system of relation- ships: with proper support and an understanding of the true nature of the movement/sensory challenges, the system of relationships is the first to come in. "These children," Greenspan assures us, "can become spontaneous and joyful."
In the near future, Greenspan will be publishing a "how-to" book on "floor time" as well as a book on the critical importance of affect for the development of the mind. (For more on the latter topic, you may wish to try the recent best-seller, Descartes' Error, by Antonio Damasio -- who researched movement in autism with Dr. Ralph Maurer -- for a superb treatment of the linkage between affective development and intellect.) Greenspan's recently- published The Challenging Child offers a clear portrayal of the five different sensorimotor processing styles which result in "difficult" childhood behavior, and contains much practical wisdom for getting in synch with a child whose pattern may be different from your own. The Challenging Child, as well as Damasio's best-seller, can be ordered through the Autism National Committee's Book Store.
While the independent research of Drs. Teitelbaum, Maurer and Greenspan support our understanding of the movement challenges which take their toll on development from the earliest stages, more pieces of this puzzle continue to be put in place by eminent researchers. In their workshop, "Rethinking Autism and Other Severe Communication and Behavior Disturbances" (Harrisburg, PA, Oct 26-27, 1995), Anne Donnellan, PhD, professor in the School of Education at the University of Wisconsin-Madison and an internationally-known author and lecturer, Martha Leary, MA, CCC-SLP, a speech pathologist and communications consultant working out of Toronto, and Jayne Miller, who has directed an innovative program providing preschool supports to children with autism in Kentucky, described the wide variety of obvious and not-so- obvious movement challenges which may be encountered. Movement, they emphasized, covers far more than obvious examples of physical clumsiness or unusual gait: it may involve difficulty starting, stopping, executing, continuing, combining and switching actions, and may impede postures, actions, speech, thoughts, perceptions, emotions, and memories.
Drawing on a wealth of anecdotes and examples, they concluded that movement challenges similar to those found in cerebral palsy, Tourette's, Parkinson's and other recognized movement disorders are found abundantly in the syndrome we call autism. "This does not mean that we are adding more labels," cautioned Dr. Donnellan. "For example, we don't wish to start diagnosing people as having autism-plus- Tourette's. What we are saying is that the behaviors we have been calling autistic can now be seen as movement-based."
Their investigation of the wide variety of movement problems found under the autism label has practical implications for early intervention, education, and all aspects of a person's life. First, it forces us to rethink the enormous and problematic category of behaviors which we have contentedly been calling "self- stimulatory." Are these really, as much of the literature contends, learned behaviors engaged in because they are pleasurable? Or are they in fact movement differences which are involuntary or which are the necessary adjuncts for calling forth some other movement? And if they are involuntary, or have necessary functions, we must rethink our own knee-jerk behavior when we rush in with extinction regimens.
Second, it forces us to rethink our unwarranted equation of a person's observable behaviors with that person's competence. For too long we have assumed that the way people "look" or move is a direct indication of who or what they are: e.g. retarded, resistant, asocial, uncaring, noncompliant. A more objective observation of the nature of movement disturbances forces us, as Philip Teitelbaum urges, to "think physiologically," and in doing so we must drop the judgmental adjectives and take a fresh look at each individual.
Donnellan, Leary and Miller suggest -- as does Greenspan -- that both the Syndrome Approach and the Behavioral Approach have clouded our vision, causing us to perceive groups where we should perceive individuals and to perceive simplistic, isolated "behaviors" where we should be inquiring into their complex neurophysiological context.
Instead of the "cookbooks" of all- purpose intervention recipes which have become associated with these approaches, they too suggest a relationship-based approach: get to know and appreciate the person while concentrating on accommodating and working around their movement differences. (For a full discussion of how to strategize for successful behavioral accommodations, see the recent Donnellan and Leary publication, Movement Differences and Diversity in Autism/Mental Retardation, which may be ordered from the AUTCOM Book Store). Only if and when a person develops a desire to change some aspect of their behavior should plans be made to work together toward that goal.
Panelists Barbara and Ruth Moran (an artist with autism and her sister), Mary Lapos (an educator), and Mary Ulrich and Pat Amos (parents) underscored the need for a relationship-based approach with examples from their own lives. Barbara spoke poignantly of her estrangement from the social world when, as a small child, she experienced adults as correcting, judging, and punishing beings who disparaged her favorite activities. Echoing Stanley Greenspan's dictum about the need to enter the child's world and to use the child's fixations in relationship-building, Barbara advised the audience, "If your child wants to sit on the floor and spin plates, you better get down on the floor and spin those plates with him!"
All of the panelists agreed that, until a child becomes "addicted to people" by experiencing human interactions as rewarding and fun, it will not be possible to help him deal with his sensorimotor challenges. Until we establish a true reciprocal relationship, we will be left with a one-sided, heavy- handed, and constantly escalating attempt at "behavioral control." While the received wisdom insists that behavior must be "normalized" or "in control" before a person with autism can be included in the school or community, the logic of the relationship-based approach makes it clear that the person must be meaningfully included first, or there will be no basis on which to engage them around the questions raised by their behavioral challenges.
On November 28, 1995, Barbara Moran, Mary Lapos, and Pat Amos returned to this theme at the Pre- Conference Day of the statewide Everyday Lives Conference in Hershey. They were joined by the new Vice-President of the Autism National Committee, Kathy Lissner-Grant. During the day- long workshop, Mary Lapos and Pat Amos reviewed "what we thought we knew" about autism, pointing out the heavy cultural and social baggage which diagnoses such as autism and mental retardation bring with them, and the price which labeled people have paid for our reliance on unwarranted assumptions -- "invented knowledge" -- of their lives and their capacity.
Barbara Moran and Kathy Lissner-Grant explained the supports and accommodations which have allowed them to establish warm one-on-one relationships with caring people in their lives. They also expressed their personal quests for relationship in a wider sense, through religion, through art, and through an abiding interest in the alternative universes of science fiction -- universes in which beings who are different have a valued place. _______________ In the times ahead, the Autism National Committee (AUTCOM) pledges to continue its coverage of and advocacy for the research, understanding and practice of positive, relationship-based approaches to assisting children and adults with autism. Positive approaches involve alternatives to behaviorism and the outdated medical model on which it is based. To practice positive approaches is to yield the current paradigm of power and control over people and their behavior for a paradigm based on building supportive relationships with people.
AUTCOM believes that relationship-building should constitute the core element in all programs and all approaches to people with autism, and that the plethora of "therapies" which are constantly being invented and marketed, while sometimes intriguing, are peripheral to this central concern.