Conference Highlights Positive Approaches, Relationships
"When a truly good idea appears in the world, you may know it by this sign: that the dunces are all in a confederacy against it." -- Jonathan Swift
Swift's words, lit by an overhead projector, were among the humorous asides that brought laughter and recognition as Anne Donnellan, PhD, Martha Leary, MA, OTR/L, and Ralph Maurer, MD joined parents and professionals for the April 22-23, 1994 conference Rethinking Autism/PDD, which was co- sponsored by the Autism National Committee and Autism Support and Advocacy in Pennsylvania. No dunces were in evidence as the 440 attendees, including a sizeable number of people with autism, heard Dr. Donnellan de-bunk the pseudoscience of IQ testing and decry the muddled concept of "mental retardation."
In an historical tour de force titled "Autism and Myths About Mental Capacity," Donnellan traced the political factors and psychological prejudices which cause many present-day practitioners to defend the concept of retardation (i.e. emptiness, lack of capacity), to reject out of hand the possibility of Facilitated Communication, and to accept the use of aversive "treatments," to the legacy of 19th century European racism and chauvinism. This legacy centers on the belief that some kinds of humans are inherently childlike, morally inferior, incapable of coherent thinking, don't notice or care about the circumstances under which they are made to live, and don't really feel pain. The particular humans in question have variously been identified as non-Europeans, as southern Europeans, as women, as "the feebleminded," and today as people with retardation or autism. The subjects may change, explained Donnellan, but the modes of social devaluation remain the same.
Martha Leary then joined Dr. Donnellan to demonstrate how the "emptiness" or deficiency model of autism can be replaced by a view of autism as a movement disturbance or difference -- that is, an underlying problem with expressive movement and its regulation. This positive approach credits the individual with competencies which may not be directly apparent through observing performance alone.
Autism, they cautioned, is not a "thing" a person "has." Rather, it is a collection of symptoms. The workings of those symptoms must be viewed and interpreted in context, including their physiological context, and not as isolated pieces of behavior in an artificial, standardized testing situation. In observing behavior productively, it is essential to resist the short-cut of labeling rather than describing.
For example, Dr. Donnellan noted the grim regularity with which the label "self-stimulation" is applied to the behaviors of people with autism. This label carries a great deal of baggage: the assumption that the person wants to perform this behavior, is taking pleasure in it, and intends by this activity to shut others out. Applying the "self-stim" label without doing the homework of clinical description precludes us from seeing that the behavior may be internally triggered and non-volitional, may be necessary to the individual's physiological self-regulation, or may be a necessary adjunct to the performance of some other movement which the individual is trying to call forth.
When autism is viewed not as a lack of cognitive abilities but as a movement disturbance, many of the behaviors associated with it appear to reflect the workings of bodies which betray their owners in carrying out volitional actions. Historically, noted Donnellan and Leary, one of the tragedies of autism has been the frequency with which people who manifest these behaviors are blamed and punished for things they cannot control, or the purpose of which they cannot communicate.
Dr. Ralph Maurer, in collaboration with his colleague Dr. Antonio Damasio, pioneered the research on autism as a movement disorder in the late 1970s. In a far-ranging presentation titled, "Autism, the Brain, Emotions, and the Dance of Relationships," Dr. Maurer explained that autism seems to be caused by damage either in the basal ganglia of the brain, which controls movement with feedback, or -- as Maurer feels is more significant -- in the cerebellum, which provides a background of awareness and synchronization of movement.
When a higher-order integrative function of the brain is damaged, as with the cerebellar abnormalities in autism, the brain subsystems become autonomous, with individual reflexes acting on their own. The challenge for the person with autism becomes one of choosing which actions to tune into and which to ignore. Confronted with an overall experience of dysynchrony, the individual must struggle to keep body movements in some degree of balance and control (self- synchrony) and to meet the requirements of other human beings and of the environment (interactional synchrony).
The difficulty of these struggles has serious consequences for the experience of emotions and relationships. While the old myths held that people with autism don't have emotions and are uninterested in others, those inferences, drawn from observations of performance alone, missed the real story. According to Dr. Maurer, the ongoing problem for people with autism is one of synchronizing emotion with a partner, of making connections in ways that allow emotions to be recognized and cultivated by others.
Autism can be thought of as an "emotional dyskinesia" because the physiological channels through which non-intimate relationships are usually organized, vision and hearing, are impaired or closed. However, Maurer emphasized that the capacity for relationship remains present.
Facilitated Communication may succeed because it connects through an open channel involving movement or touch. However, because since it is based on the forging of a relationship -- i.e. a complex synchronization of interactions -- it doesn't work for every would-be facilitator. Maurer has characterized a good facilitator as akin to an Arthur Murray dance instructor: someone who can take a novice with two left feet and waltz them around the room.
A crucial but overlooked obstacle to this "dance of relationships" is that, in people with autism, the pulse of interactions tends to be slowed down. The time frames and units in which we tend to organize and recognize interactions may not apply to the behavior of people with autism: we may miss the actual shape and size of their behaviors because they are occurring on much longer wave-lengths which do not synchronize with our own. Slowing down the interaction pulse may help us to recognize and respond to pattern in what had previously appeared random, and of such synchronies relationships and communication are made.
At the conclusion of Dr. Maurer's presentation, he was addressed by a young woman with autism who had been listening intently from a front row. Speaking slowly and softly, in a voice newly emerging after an initial breakthrough with Facilitated Communication, she thanked Dr. Maurer for understanding.