Bernard Rimland’s Infantile Autism: The book that changed autism
Editorial: Stephen M. Edelson, Ph.D.
This year marks the 50th anniversary of one of the most important contributions to the field of autism. In 1964, Dr. Bernard Rimland single-handedly shattered the then-accepted psychogenic view of autism in his seminal book titled Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior. Two decades after the concept of autism was first introduced by Dr. Leo Kanner, Dr. Rimland’s thesis turned the field topsy-turvy and provided much-needed guidance on how best to understand and treat individuals on the autism spectrum.
Soon after their son Mark was born, Dr. Rimland and his wife realized that he was not responding and acting like other infants. After consulting with several pediatricians, they were at their wits’ end—just like many other parents then and now. Fortunately, Dr. Rimland’s wife remembered reading a psychology textbook that described a child who acted differently than others. They searched through a pile of boxes, found the book, located the story, and realized immediately that their son had autism. This was the first time that Dr. Rimland saw the word “autism,” even though he had completed advanced degrees in psychology just a few years earlier.
Like most parents, Dr. Rimland wanted to learn as much as possible to help his son. Having recently completed a doctoral degree in experimental psychology, he delved into the scientific literature and quickly learned that there was general consensus that autism was caused by parents, especially the mother. Basically, it was purported that the child’s parents were much more concerned with their own lives than with providing physical and emotional support to their children. As many of you know, Bruno Bettlehiem first introduced this theory, and healthcare professionals worldwide, including Dr. Kanner, accepted Bettleheim’s assertion even though there was no solid evidence to support such a claim. (Note: I am not referring to Bettleheim as a doctor since it was later learned that he never received a doctoral degree.)
Dr. Rimland and his wife were incensed at such a ridiculous allegation by the professional community, and Dr. Rimland set out on a five-year journey to figure out, as best he could, the underlying cause of autism. Since they lived in a small house, Dr. Rimland converted his side porch into an office so he could organize his materials and focus on writing a critical review on the current approach to autism. At that time he worked full-time for the U.S. Navy as a civilian researcher, and so he spent evenings and weekends working on the book.
During his business travels for the Navy, Dr. Rimland spent his evenings searching for articles at local university libraries. In one instance, he convinced the head librarian at Tulane University to lock him inside their medical library overnight so he could find and read articles. In later years, Dr. Rimland recalled eating the stale food from the library’s coin-operated vending machines throughout the night.
If Dr. Rimland found an article written in another language, he would locate translators through the Navy’s network and hire them to translate the articles. The numerous drafts of the book were typed by hand and copies were mimeographed to share with others for feedback.
Although Dr. Rimland’s initial plan was to write a review article for a journal, the manuscript grew so thick that his wife suggested that he consider writing a book instead. He stared at the stack for a few moments and soon realized that he had taken on a much bigger project than he had anticipated. Most of Infantile Autism was written in four years, and the last two sections, in which he proposed a theory on the underlying cause of autism, took one year to write.
During the writing of the book, Dr. Rimland had numerous correspondences with Dr. Leo Kanner, who later agreed to write the foreword to the book. A few years after the publication of Infantile Autism, Dr. Kanner is said to have apologized to parents at a conference for implying that they were responsible for their child’s autism.
Once the manuscript was completed, Dr. Rimland submitted it to Appleton Century Crofts, the premier publisher of psychology books. Infantile Autism was reviewed and accepted for publication. In fact, the reviewers were so impressed with Dr. Rimland’s thesis that the book was nominated for and awarded The Century Psychology Series Award for its significant contribution to the field of psychology.
The ground-breaking premises of Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior
Besides being critical of Bettleheim’s parent-blaming theory, Dr. Rimland’s book addressed other important issues related to autism, including diagnosis, genetics, cognition, and a possible neurological site of damage.
Psychogenesis vs. Biology. In Chapter 3 of Infantile Autism, Dr. Rimland laid out the argument against a psychogenic cause for autism and clearly explained why autism was much more consistent with a biological cause. He pointed to many facts, some of which included: autism affects three or four boys to one girl; most siblings do not have autism; many of the symptoms of autism are similar to those of “organic brain damage;” and children with autism are usually different from birth.
Dr. Rimland’s chapter was clear, concise, and logical, and many professionals were shocked to learn about the lack of research supporting a psychogenic view of autism. They quickly “jumped ship” and started to view autism as a biological disorder.
Diagnosis. Beginning in 1943, Dr. Kanner published descriptive papers in which he argued that autism was a disorder distinct from childhood schizophrenia. Dr. Rimland took a more straightforward approach in Infantile Autism by describing characteristics of child schizophrenia and comparing these symptoms to autism. For example, he noted that the two disorders had different patterns of onset, that language ability and physical responsiveness differed, and that hallucinations were a hallmark of schizophrenia but not of autism.
While writing Infantile Autism, Dr. Rimland felt that a checklist was needed to help parents determine whether or not their child might have autism. He wrote and included a “suggested checklist” in the appendix titled “Diagnostic Check List for Behavior-Disturbed Children (Form E-1).” The checklist was developed primarily to diagnose Kanner’s syndrome, or classical autism, even though many professionals in the field misunderstood his intentions and thought the checklist could diagnose all forms of autism.
To his surprise, many parents ripped Form E-1 from the book, completed the checklist, and mailed the pages to Dr. Rimland for his records, asking for suggestions on how best to help their children. In their letters, parents would sometimes mention additional symptoms that were not discussed in Infantile Autism. Dr. Rimland revised the checklist a few years later and called it Diagnostic Form E-2.
One final note: Besides diagnosing Kanner’s syndrome, Dr. Rimland felt that the checklist could be used for subtyping since it was obvious that there were many forms of autism. The Autism Research Institute (ARI) recently analyzed the E-2 database, consisting of more than 40,000 cases, and found 10 to 12 distinct subgroups. We are now attempting to replicate these findings in an online survey (See AutismResearchSurvey.com).
Genetic component. In his book, Dr. Rimland also concluded that there was likely a genetic component, as evidenced by published reports on the higher prevalence of autism in identical twins than in fraternal twins. Basically, identical twins share the same genetic makeup, while fraternal twins overlap by about 50%. A few years later Dr. Rimland suggested that autism was likely caused by an interaction between genetics and the environment.
Cognition. In the chapter entitled The Conceptual Impairment, Dr. Rimland wrote: “It is possible to trace its diversity of symptoms and manifestations to a single critical disability: The child with early infantile autism is grossly impaired in a function basic to all cognition: the ability to relate new stimuli to remembered experience.” Basically, he argued, rather convincingly, that those on the autism spectrum have much difficulty relating what is currently happening in their surroundings to their past experience.
There are many components of memory, and researchers have found that episodic memory is dysfunctional in autism. In short, this type of memory refers to the storage and retrieval (i.e., recall) of autobiographical information—that is, experiences unique to the individual. Basically, this form of memory involves what a person has experienced in the past, such as what the person ate for lunch or where he or she purchased a specific item. Dr. Rimland’s insight was, again, right on the mark! Furthermore, the hippocampus in the brain is responsible for the creation of episodic memories, and anomalies of the hippocampus are among the earliest and most consistent neurological deficits documented in autism.
Underlying cause of autism. Dr. Rimland dedicated several chapters of his book to hypothesizing an underlying cause of autism. He suggested that a particular area of the brainstem, called the reticular formation, could be the primary site of dysfunction. The reticular formation is responsible for filtering incoming stimuli, regulating arousal and attention as well as the sleep-wake cycle, and much more. Autopsies of the brainstem have not supported Dr. Rimland’s hypothesis.
When I first met Dr. Rimland in 1979, I asked him about his current thoughts on the reticular formation. He mentioned that, at that point in time, it made logical sense. He did not seem disappointed that his theory did not pan out since he was trained as a psychologist rather than a neurologist. However, he was clearly excited that researchers from some of the major universities were just beginning to study the neurology of autism.
Dr. Rimland was too specific in hypothesizing that autism stemmed from defects in a specific area in the brain. Current research indicates that many areas of the brain are affected. I should mention that researchers have found some abnormalities in the brainstem in autism. In addition, Dr. Woody McGinnis, Dr. Audya Tappan, and I have published a couple of papers in which we speculate that the nucleus tractus solitarius, a small structure in the brainstem and part of the blood-brain barrier, may be the site in which environmental toxins enter the brain. The most recent paper can be viewed at: www.AutismNTS.com.
Events following the book’s publication
After a rather intense five-year period writing Infantile Autism, Dr. Rimland thought that his work in autism was finished. His plan was to focus his life on raising a family with three children and working at his full-time Navy job. However, as many of you know, his journey had just begun. Inspired by the hundreds of letters from parents worldwide as a result of his book, Dr. Rimland continued his tireless efforts to help individuals on the spectrum and their families for the next 40¬plus years.
As a result of the momentum from the book, Dr. Rimland founded the Autism Society of America in 1965 to help distribute information to families about treatment. He focused in particular on behavioral techniques, which were first pioneered by Dr. Carl Ferster at Indiana University and later developed more formally by Dr. Ivar Lovaas at UCLA. Two years later, in 1967, Dr. Rimland established the Autism Research Institute to be a central, unbiased organization that would track research, conduct studies, and encourage scientists to study autism.
As all this was happening, demand for Dr. Rimland’s book continued to grow. Dr. Rimland once told me a story about a librarian who attended one of his talks. After his lecture, she approached him and said that she was honored to meet him. He asked her if she was a parent or professional, and she responded, “Neither.” She told him that Infantile Autism was widely-known in librarian circles as one of the most stolen books from university libraries. As you could imagine, Dr. Rimland had mixed feelings about hearing this news.
Dr. Rimland’s Legacy
Infantile Autism exposed illogical assumptions about the underlying cause of autism that had been accepted by the professional community. As a result of Dr. Rimland’s hard work and perseverance, the autism field was placed on a science-based track. But Dr. Rimland’s contributions to the autism field go well beyond this book. He dedicated nearly 50 years of his life to improving the lives of hundreds of thousands of individuals and their families. Dr. Rimland is still missed greatly by his friends, colleagues, and the entire community. Fortunately though, his spirit is still strong and is still with us!
Editorial appeared in the Autism Research Review International, 2014, 28(1), pp. 3, 7