An adapted extract from The Politics of Autism by Bryna Siegel, PhD. (Oxford University Press, September 3 2018).
I met my first child with autism when I was a 19-year-old undergraduate, in 1972. Since then, the “autism” landscape has changed: In the early 1970s, autism had not quite emerged from its Dark Ages. In those days, mothers of autistic children were strongly suspected of an early, profound, unconscious rejection of their infant, and it was believed that the ensuing failure to bond resulted in the solipsistic autistic aloneness with which the child faced the world.
Leo Kanner, an American child psychiatrist, was the first to describe “early infantile autism,” a condition whereby the child acted as if others were not meaningful to constructing his or her emotional life. While Kanner himself did not argue that parents were the cause, he acknowledged that many parents who sought out his academic expertise were not the warm, fuzzy parents he felt had “the right stuff” to naturally break through their child’s self-isolation. Others, like Bruno Bettelheim, a professor of mine, did frankly posit that “refrigerator mothers” caused autism.
This was basically where the state of our understanding of autism was in the early 1970s. I’d grown interested in autism as a way to explore the themes guiding the study of psychology of the day—“free will” versus “determinism,” specifically. In child psychology, this boiled down to “nature” versus “nurture.” A determinist would argue that the behavior that made for autism was pure nature or biology; a humanistic viewpoint, on the other hand, argued that nurture or the application of psychotherapeutic-induced change could make all the difference. Autism, it was thought, was the most extreme example of nurture gone awry. I wanted to see that for myself.
So, in 1972, I got a summer volunteer position at Creedmore, a New York City welfare hospital, at a children’s inpatient psychiatric unit. These children were like none I had seen: These children danced on their toes, twirled in circles, flapped their hands, and talked only in echoes. My attempts to help with simple activities like joining a group for a story time, coloring, or even eating with utensils were met with vacant stares.
At lunchtime, I was allowed to read their medical records. One girl was the seventh of nine born from different fathers to a schizophrenic mother. Another had been found after being abandoned by his drug-addicted parents. “No wonder they created their own worlds!” I thought at the time.
Next, I signed up for a three-month teaching internship at Elwyn Institute, a long-established, well-funded private residential school for the developmentally disabled outside Philadelphia. This time, the children in my class did not come from the poorest parts of New York City, but the wealthiest. These children were a lot better dressed than the kids at Creedmore, but they too danced on their toes, twirled in circles, and flapped their hands. Elwyn pupils came from intact, well-off families with siblings who were high achievers in school. How could I reconcile this with the “refrigerator mother” hypothesis?
By January, I returned to college, determined to write my senior thesis on the etiology of early infantile autism. I decided the etiology of autism was biological, that we were a long, long way from understanding the specific causes, and that if I was interested in studying nurture more than nature, which I was, the field of autism was probably not a great place to spend more time.
I changed tactics. I did a PhD in (normal) child development at Stanford, focusing on early mother–child attachment, and whether it was disrupted by the use of significant early nonparental care. By the late 1970s, the feminist movement supported women who chose to return to work shortly after childbearing. It is hard to believe now, but then the idea of day care for infants was new. There was concern that leaving infants to nonparental care would disturb mother–infant attachment, the prototype for all later secure social relationships. Interested in the earliest aspects of nurture, I took a master’s degree in early childhood education, then finished my PhD—in child development/developmental psychology, writing my dissertation on the early effects of day care.
I was 27 years old, with a young daughter, a Stanford PhD (and a year of postdoctoral training in biomedical statistics) under my belt. I had a contract to write my first book—a book for parents on what research said about how to choose developmentally beneficial day care. But, I needed a day job. After giving a talk about my new book at Stanford’s child psychiatry department, I was approached by the department head, Dr. Tom Anders. He had just started his youngest child in day care that week. He really liked the talk and wished to recruit me, but the only open position was to run an autism research project. I convinced him to hire me. And what I thought would be a day job became my career. Within a year, I was left completely in charge of Dr. Anders’s autism research project when he and the rest of his lab left to join the faculty at Brown University.
From my earliest work on subtyping autism, it became clear to me that there were many dimensions of autism, some present in some children but not others, and that severity varied as well. On top of this, as a developmental psychologist, I worried that in child-psychiatry diagnoses, there was no meaning given to the “developmental” aspect of the psychiatric term “developmental psychopathology.” Psychiatry lacked a model for factoring in that a child was a developing child first, not just describable by the signs and symptoms of his or her disorder.
In autism, as in any neurodevelopmental disorder, some tracks of development could be proceeding on time, while others might not be. For instance, impairment in the brain’s language center would, not unexpectedly, hamper language development, but usually also impede “downstream” development in interdependent realms like play—because the capacity to narrate play with language would be hampered when there was little or no receptive or expressive language capacity. I began to see children with autism not just as a checklist of symptoms as psychiatrists did, but as a developmentally driven interplay of their individual strengths and weaknesses. Eventually, this work led to my 2003 book, Helping Children With Autism Learn.
At the same time, I had also became increasingly involved with the effects of autism on the family. Academics in the field now all understood that parents do not cause autism. But it did not take much to see that autism caused some families to struggle. In 1994, together with Dr. Stu Silverstein (a pediatrician and older brother of Mark, a man with autism), we published What About Me? Siblings of Developmentally Disabled Children. As a sign of the times: Our original publisher wanted our book to have examples of developmental disorders other than autism (and for the title to reflect that) because the autism “market” was then seen as small.
Soon after that, in 1996, I published The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders. This was the first book I know of that used the term “spectrum” in the title along with autism. In the research community, we had begun talking about the spectrum as a way of characterizing what was coming to be recognized as a broad range of expression for signs of autism (though the term “autism spectrum disorder” would not be used in formal diagnostic terminology for another 17 years).
The World of the Autistic Child described how autism could alter how a child understood things in his or her surroundings. One chapter described how getting the diagnosis of autism provokes grieving for the loss of the hoped-for child; and what “healthy” versus more prolonged, complicated grieving looked like. This work struck a chord when I spoke to parent groups, and I began to realize how urgently the psychological lives of parents of children with autism needed to be addressed. Most important, I could see that parents did better if they could see themselves as able to help their children improve. This is still a key focus of my current work—parent training for families who have children with newly diagnosed autism.
In the 1990s and 2000s, my direction in autism treatment work was guided by two powerful mentors, Dr Eric Schopler and Dr Ivar Lovaas, who, to my mind, were working toward the same goals but were flip sides of the same coin, the former aiming to improve the quality of lives and the latter aiming for a “cure.” Prior to 1987, the only nationally disseminated treatment program for autism was TEACCH, developed by Schopler, at the University of North Carolina, Chapel Hill. A giant and pioneer in the field of autism treatment and research, Dr. Schopler was founding editor of what originally was the Journal of Autism and Childhood Schizophrenia, today the Journal of Autism and Developmental Disorders. His work, dating back to the early 1970s, profoundly influenced my own, being the first to centre the teaching for children with autism around the child’s likely autistic learning strengths, such as the ability to rely on visual schedules and on routines.
My second mentor, Dr. Ivar Lovaas, had in 1987 published a paper that rocked the world of autism by suggesting that intensive application of behavior modification principles could recover 50% of children with autism. Of course, everyone instantly wanted his therapy for their child. A couple of the patients from the autism clinic I had just started at University of California, San Francisco in 1989 made it down to the Lovaas Clinic (situated at University of California, Los Angeles) and came back very much improved. One seemed no longer autistic; another was talking and playing with toys—both new developments from several months earlier, when this same child had been completely withdrawn, actively avoidant, and preverbal. The parents of this second boy recruited me, along with Dr. Tristram Smith, then head of Dr. Lovaas’s clinic, to testify at an educational due-process hearing against the child’s school district and the state of California in order to compel the boy’s public education authority to pay for treatment with the Lovaas method—called DTT (discrete trial training). The parents prevailed. And the case, known as Smith v. Union School District, set a federal precedent for subsequent cases that proliferated across the country over the next few years, compelling school districts to fund or offer Lovaas’s methods of intervention.
I was thrilled with the outcome of the Smith case, as the alternative for this boy would have been just 3 hours of “Mommy and Me” classes per week—which was basically all schools did for young children with autism in the 1980s and the first half of the 1990s. Over time, however, I began to collect a local sample of children receiving DTT. And I saw that not all benefited nearly as much as the first two I had seen, who had received DTT at UCLA—even though most were treated by students Lovaas had personally trained.
In 1998, one of my then graduate students, Dr. Stephen Sheinkopf, and I published on this sample, finding that DTT was significantly better for children than “treatment as usual” (like a Mommy and Me class), but that there was considerable variation in treatment outcome. We also had preliminary data to suggest that further studies should examine whether 25 hours per week of DTT, rather than the recommended (and obviously more costly) 40 hours per week, achieved comparable results.
This suggestion for “further research,” standard operating procedure when writing the concluding paragraphs of any research paper, became a flashpoint. And conflict broke out between those with an interest in the science of applied behavior analysis, and those who exalted Dr. Lovaas’s study and believed that providing anything less than 40 hours per week of treatment presented an unfounded risk. (Today, most children treated with this method receive around 25 hours per week, so research has supported what we then suggested should be studied.)
At the end of 2013, I retired from UCSF after 24 years of running an autism clinic, doing research on identification and diagnosis, writing and lecturing for parents and teachers, and collaborating with colleagues in genetics and neurology, who someday, I hope, will achieve the holy grail of autism—prevention or medical remediation. But I knew I was not done yet working in the field: My heart was in helping families better parent their children with autism and developing a model for an “autism home”—a place families could come back to for continuity of care, where the clinicians know them and their child (or now teen or adult), and know what had worked and what hadn’t worked.
Too many families I knew felt that they were on their own after the diagnosis, when in fact their need for support and guidance was just beginning. I knew that if the diagnosing clinician never saw a child again after giving the family a diagnosis of autism, that clinician would be in a very limited position to discuss prognosis. To provide prognosis, you must be able to factor in treatment response.
Presently, there is not much out there in the way of continuity of care for families living with autism. Parents need a place to get continuing care—so they know if they are doing the right thing. Parents need to know if their child is not improving as much as ideally hoped and why that might be. Parents need a relationship with a professional who has seen where their child has come from and what has been tried, who can say what else should be tried or can say, “You’re doing all you can do and doing it well.” Believe me, without that support, the guilt of believing there must have been something missed exists in every parent with a child who carries a diagnosis of autism.
In 2013, I founded the Autism Center of Northern California to create a model for a place families could go for help—to learn how to teach their children, to learn to deal with behavior difficulties, and to come back at each new stage of development—including adulthood. I am convinced from research and experience that interventions that integrate developmental and behavioral principles are foundational to the most effective approaches we have today for ameliorating the difficulties caused by autism. I’ll leave the curing of autism to my medical colleagues.
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