The researcher Simon Baron-Cohen's declaration that "[i]t has never been a better time to have autism" (The Independent, Jan. 21, 2007) strikes many of us as ironic. But then we know what it means: it is a promising and exciting moment in the field. Who can predict what wonders will emerge from brain, drug, developmental and educational research? Will we find the causes of autism and promise for prevention? Will we discover precise genetic or molecular lesions and repair them? While these strides are exciting and promise better outcomes for the child with autism, I would argue that the field continues to neglect a key aspect of these children: their internal, emotional lives.
When I began graduate school in the 1980s, child psychologist Bruno Bettelheim's belief that emotionally cold and unavailable mothers caused their children's autism (The Empty Fortress, 1967) had already been shown to be a tragic falsehood. While the biological basis of Asperger's was a given at most universities and medical centers, the developmental facts were especially prominent at the University of North Carolina, where I attended graduate school. When I encountered my first case of Asperger's, I met a 6-year-old boy as disabled as my education had trained me to expect. He spun, flapped, referred to himself in the third person and echoed what he said. In addition to odd speech and motorisms, he insisted on sameness and had no tolerance for frustration. He made no eye contact, had severe social difficulties, rejected his mother's affection and was tested in the Borderline range of intellectual functioning. Clinicians at Boston's best hospitals had diagnosed him as having Infantile Autism.
But for all the ways in which this child's neurological deficits hit me, I saw other things, too. Timothy (as I'll refer to him) showed me without question that he could relate to a therapist, use play and pretend, and therapeutically thrive in an environment deemed by many too open and unstructured for such a child. I admit that our therapy did not look like the usual; it was substantially accommodating. It moved slower than a snail and involved a lot of waiting and sparse communication. My sense that this approach was effective was confirmed by Timothy's teachers, who reported a decline in his frustration and aggression. His biting other children stopped and stereotypical tics and movements lessened. Timothy's parents described newfound cooperation and engagement at home. His communication grew in all environments, and a second testing measured his intellect as now solidly Average.
Over the subsequent two decades I treated many children diagnosed along the autistic spectrum. I found these children capable of forming therapeutic relationships and productive therapies involving play and talk. While the therapies were highly accommodating, our goals were not lowly. The creation of a therapeutic environment that acutely respected their individual fears and sensitivities -- physically, psychologically and emotionally -- led to the child's growing willingness to venture out toward the therapist and others outside treatment. Establishing a shared world of language and interest between therapist and child led to the child's growing more able to communicate. By increasingly engaging with me, as therapist, these children grew more aware of social experience and the satisfactions of greater connection. The clear appreciation that I expressed for their interests and intellectual strengths showed them that they can be who they are and still find a place in the world. It also encouraged them to take interest in others, in this case me and my interests.
Today, research says that autism spectrum disorders are as common as 1 in 91 children. Diagnosis has sharpened. Children receive language, behavioral and educational interventions earlier, this being the quickest route to remedial growth. Brain science progresses daily with new discoveries. Psychiatry and psychopharmacology continually innovate and refine drug therapies for a population that frequently suffers anxiety, depression, obsessions, compulsions and other co-morbid conditions. Researchers in allied fields, such as speech and language and socio-pragmatics, continue to develop keener methods of helping develop these children's social and communication skills. Farther afield, well-trained and informed educators are leading their schools to build programs that better meet the child's complex needs.
And yet, as far as therapy goes, the emotional life of the child with Asperger's remains mislaid or forgotten.
Although Bettelheim's error was lethal and malignant, developmental psychiatry and psychology swung the pendulum far to the other side -- where it got stuck. Any understanding of this disorder that suggests the child with autism has an internal emotional world has been neglected. For example, this past summer I discovered that since its founding in 1979, the Journal of Autism and Developmental Disabilities, a premier journal "devoted to all aspects of autism spectrum disorders [...including] clinical care ... and treatment for all individuals," had published 2,262 articles, not one of them focusing on psychotherapy or counseling with a child with Asperger's.
The bias is undeniable, even if understandable and defensible. Early research announced loud and clear that autistic children lack a theory of the mind, a capacity for symbolic thought, rich and varied affect and so on. That fundamental knowledge was aimed at extinguishing the belief that any child with autism, however high-functioning or mild the form, might benefit from play and talk therapy. The notion that a clinician could sufficiently modify the techniques of traditional play and relationship-based therapy to befit the child's special needs and deficits never occurred as a possibility. The conventional thinking in autism judged any kind of therapy that addressed the child's feelings and inner experience to be psychoanalytic, misguided and, some went so far as to say, negligent.
In 1944, in his seminal "Autistic psychopathy in childhood," Hans Asperger, a pediatrician, keenly observant and deeply appreciative of these children, cautioned us about a condition that, through its disruption of social relations and communication, holds devastating potential. That realistic worry has not changed much in more than 60 years. It's certain that we will be seeing an increasing number of children with Asperger's, and we know that these children and their families will continue to face a tough road. No matter how far and deep our technologies and science reach, the truths of human connection and the human condition will always be meaningful to the treatment, teaching and parenting of children with autism.
A version of this commentary first appeared in the Brown University Child and Adolescent Behavior Letter, January 2011.