EARLY AUTISM RESEARCHER REMEMBERED
BERNARD RIMLAND: EARLY RESEARCHER ON AUTISM
Bernard Rimland, a psychologist considered by many to be the father of modern autism research and the founder of the Autism Society of America, died November 21, 2006, at the age of 78. He died at a care facility in El Cajon, a suburb of San Diego, after battling prostate cancer, said his wife, Gloria Rimland.
Mr. Rimland was instrumental in forming the way doctors deal with autism. His 1964 book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior ran counter to the view that the disorder was the psychological outcome of uncaring mothers who forced their children to withdraw into a shell of indifference.
Instead, Rimland hypothesized that autism, which is characterized by poor language skills and a range of difficulties in the area of social skills, was the result of a biochemical defect. Mr. Rimland founded the Autism Society of America, the largest parent-based autism group in the nation, with more than 100,000 members and supporters and 200 chapters. He served as a technical adviser for the Oscar-winning film ”Rain Man,” in which Dustin Hoffman modeled his performance, in part, on Mr. Rimland’s autistic son.
In 1967, he started what is now known as the Autism Research Institute based in San Diego. Autism has always existed, says Oliver Sacks, the well-known writer and neurologist. But the condition wasn’t named until 1943, so it’s difficult to know much about autism’s place in society before then. And more than 60 years after Leo Kanner described the developmental disorder, scientists still understand relatively little about it. The public’s awareness about autism, however, has come a long way, thanks to the early clinical controversies, the ongoing efforts of researchers and a growing advocacy movement.
A General Overview of The Evolution of Autism Research and Advocacy Since 1943:
1943: Leo Kanner, a child psychiatrist at Johns Hopkins Hospital in Baltimore, described the condition in 11 children. Kanner took the term “autism” from the Greek word autos, meaning self, owing to the withdrawn and solitary nature of the children. In his paper, Kanner hints at inadequate parenting as the cause of autism. He would later become the founder of the field of child psychiatry in the United States.
1944: Unaware of Kanner’s work, a pediatrician from Vienna named Hans Asperger independently used the word “autism” to describe four children who shared similar but milder forms of the cases reported by Kanner. All of Asperger’s patients appeared to be exceptionally gifted in various realms.
1949: Kanner published a paper in which he attributed autism to the lack of sufficient maternal care and emotional detachment of mothers from their children. This was the beginning of an era that regarded mothers of children with autism as cold, calling them “refrigerator mothers.” The idea gave autism a social stigma; it was an era of severe emotional distress for families with autistic members.
The 1950s and 1960s: Bruno Bettelheim, an immigrant academic from Vienna, who was Director of The Sonia Shankman Orthogenic School at the University of Chicago and a member of the University’s teaching faculty, was said to have popularized Kanner’s idea of “refrigerator mothers” through various published articles. Bettelheim’s first book to focus in detail upon case studies of children with autism, Truants from Life, was published in 1955 and received notable public acclaim. His most famous book about autism, The Empty Fortress: Infantile Autism and the Birth of Self, was published in 1967.
1964: Bernard Rimland, who has been rumored to have been a psychologist at the University of Chicago during some part of the years that Bettelheim was there, is said to have publicly confronted and rebutted Bettleheim’s ideas with the perspective presented in his own book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Rimland became involved with autism after his own son was diagnosed with autism in 1958.
1965: Rimland founded the Autism Society of America. The society currently has more than 120,000 members and more than 200 chapters throughout the United States. The establishment of ASA is seen as the beginning of a movement for more awareness and research on diagnoses and treatment of Autism Spectrum Disorders (ASD).
1980: Increasing data about autism and its neurological basis, in addition to the advocacy efforts of parents and relatives of those with autism, caused the American Psychiatric Association to add autism to its Diagnostic and Statistical Manual (DSM-III) of Mental Disorders.
1991: Lorna Wing, a psychologist from the United Kingdom, published an English translation of Asperger’s original paper, and introduced the idea that autism includes a variety of disorders, ranging from those who have severe language, cognitive and sensory problems to those who are more mildly affected and have trouble understanding social interactions and nuances. Those on the latter end of the spectrum are of normal to higher than normal intelligence, and often are very gifted, as were Asperger’s patients.
1992: Autism Network International was started by the combined effort of Americans Jim Sinclair and Kathy Grant and Australia’s Donna Williams. Today, ANI describes itself as “an autistic-run self-help and advocacy organization for autistic people.”
1994: The diagnosis of Asperger’s syndrome was added to the DSM-IV.
2003: Global and Regional Asperger Syndrome Partnership (GRASP), another self-advocacy organization, was started by Michael John Carley. GRASP’s goal is to increase societal awareness about Asperger’s syndrome and other forms of autism, as well as to educate people within the spectrum about their own condition by providing education and platforms within which to interact with other autistic individuals.
A CNBN Interview: Vernon Smith, Nobel Prize Winner in Economics (2002) with Asperger’s Syndrome
John Carley: Trying to Change The Image of Autism
Michael John Carley has been trying to change the “public image” of autism. He has autism and he’s happy just the way he is. He thinks that might surprise you. Carley didn’t know he was autistic until he was 36 years old. The diagnosis changed everything he’d ever understood about himself. ” It was biblical,” Carley says, with a laugh, of getting the diagnosis. “Of course, you say to yourself, ‘Nah that can’t be. It’s garbage.’ ”
Mr. Carley only heard about his kind of autism, Asperger’s syndrome, shortly before he was diagnosed. It’s sometimes called “geek syndrome” because people with Asperger’s, like Carley, often seem quirky and eccentric, but they are highly intelligent. Those with Asperger’s also have trouble reading other people’s emotions, so they often bumble in social situations.
When Carley first received the diagnosis, he became depressed. Yet the Asperger’s syndrome diagnosis fit like a glove, he says. It explained things about his life. “All those experiences, I was walking away scratching my head going, ‘What the heck just happened here?’ Finally explanation, finally a sense of why and how,” he says.
NPR RADIO INTERVIEW: JOHN CARLEY ON HIS OWN EXPERIENCE OF AUTISM
OTHER PERSPECTIVES ON THE EARLY CONTROVERSIES ABOUT AUTISM
It is understandable that memorials written about the death of Rimland would return to and emphasize the controversial differences between Bettelheim’s psychologically based understanding of autism, and Rimland’s assertion that the cause of autism was a neurological one, not psychological. However, the current memorials, as well as their references to Richard Pollock’s self-serving and caustic book about Bettelheim, fail to provide an accurate presentation of many issues that were involved in the Bettelheim-Rimland controversy. In doing so, my own impression is that Bettelheim is demonized, in part, in order to elevate Rimland to “medical sainthood.”
Despite all of the works about Bettelheim that have been cited in the obituary and memorial articles about Rimland’s death, I published the first major journal article about Bettelheim’s life before and after his immigration to America (Zimmerman, D. P., 1991, The Clinical Thought of Bruno Bettelheim: A Critical Historical Review. Psychoanalysis and Contemporary Thought, 14 (4), pp.685-721).
That article included a detailed account of his major theories (including autism), descriptions of the academic training and psychoanalytic credentials that he presented to the University of Chicago and his reading public (as well as a detailed review of their sometimes quite major distortions) and a critique of some of the particular elements of his understanding of the etiology of autism.
Considering my own previous study in this area, here are some additional details that I hope readers might consider:
Bettelheim has been accused of inventing much of his clinical background. During the past week, I have read a number of obituary/memorial articles that described Rimland as a psychologist who taught at the University of Chicago at the same time that Bettelheim was teaching there. However, I have not been able to uncover any factual background information that supports the claim that Rimland ever taught at the University of Chicago.
In the earlier days, Bettelheim was not simply a cruel maverick in his belief that many pathologies, and specifically autism, were always rooted in the quality of the mother’s particular care giving abilities. At the first major conference roundtable discussions about the theory and etiology of autism (The Annual Meetings of The American Association of Orthopsychiatry, 1954 and 1955), Loretta Bender (The Bender-Gestalt Test), Margaret Mahler (a major contributor to the theory of childhood separation-individuation), and Leo Kanner all subscribed to the mother-centered belief about the etiology of autism. Incidentally, it was Kanner who coined and used the phrase “refrigerator-mother” that is always (incorrectly) ascribed to Bettelheim. I have never found an example of Bettelheim using that phrase in any of his clinical articles and works
Over time, Bettelheim was not as firm in his position on parental blame as others have described him to be in the past, and again as he is described in the currently published Rimland memorials. In Bettelheim’s 1956 article entitled Schizophrenia as a Reaction to Extreme Situations, he clearly pointed out how tenuous the picture of the rejecting mother really was: “We have overlooked the fact that individuation, and with it stress and pain, begins at birth. Fortunately, this is being recognized, and psychoanalysts now decry the haunting image of the rejecting mother.”
Nevertheless, just as most adherents to the now archaic classical model of psychoanalysis did at that time, Bettelheim continued to look backward into the patient’s early life to find recognition of that partuclarly unique historical trauma, the discovery of which would prove to be the mutative element for the psychopathology at hand, including autism.
Why did Bettelheim cling to the idea of impaired mothering resources and caring for the child, early trauma related to maternal care in the very earliest months of life, as the source of autism? Many claim that it was rooted in a “sadistic,” belittling attitude toward mothers, when emergent child pathology was involved.
Counter to such sadistic attitudes, it is much more probable that Bettelheim never gave up his belief in the mother as the source of a child’s autism, because by clinging to a theory of etiology that was clearly psychological there was still the hope that the damage could be repaired by an intensely cohesive benign therapeutic milieu, such as the one that he attempted to develop at The Orthogenic School. In other words, one might say that a major source of Bettelheim’s refusal to give up his focus upon faulty maternal care was that he was overly-hopeful that psychologically based therapeutic residential treatment could ameliorate, reverse the state of acute autistic withdrawal.
Finally, one internationally renowned expert in the field of autism research and practice once emphatically said to me that we should be ever grateful for the intense Rimland-Bettelheim controversies; one outcome of the flurry of clinical and public interest generated by those controversies was that autistic young people would no longer be left to languish for years on the back wards of state psychiatric hospitals.
Chloe Silverman from Cornell University has written what I think is a fair and balanced review of the Bettelheim-Rimland controversies in her article, “From Disorders of Affect to Mindblindedness: Framing the History of Autism Spectrum Disorders.” A link to Silverman’s article is provided below: