This editorial also appears in Vol. 32, No. 4, 2018, of Autism Research Review International
By Stephen, M. Edelson, Ph.D.
Executive Director, Autism Research Institute
Isaac Newton once said, “If I have seen further it is by standing on the shoulders of giants.” In the same way, our achievements in the field of autism today stem from the work of early giants in the field—researchers who revolutionized our knowledge about autism and its treatment.
The early days of autism research
Many years passed between the first published paper on autism in 1943 and the start of active research 20 years later. Much of the early research was inspired by Dr. Bernard Rimland’s widely acclaimed 1964 book, Infantile Autism, in which he argued convincingly that autism was not a result of emotional neglect—the prevailing theory at the time—but instead had biological roots. In his book and later in a 1968 documentary film, The Invisible Wall, Dr. Rimland hypothesized that autism most likely resulted from the interplay of genetics, the environment, and neurology.
Prior to this time, parents often received counseling, while their children were taught play skills. Many researchers and therapists, inspired by Dr. Rimland’s revelations, began readjusting their focus. As a result, physicians and therapists began to treat these children using the same methods they used to treat children with other biologically-based disabilities such as developmental delays.
In these early days, doctors often prescribed strong medications for individuals with autism, such as Haldol, Mellaril, and Tegretol. Therapists frequently used strict behavioral techniques, often referred to as behavior modification, which included physical punishment.
A well-established medical center, UCLA’s Neuropsychiatric Institute, soon took a lead role in studying autism by incorporating both a biological/medical and a behavioral perspective. Because of disagreements on how best to treat challenging behaviors, the principal researcher, Dr. Ivar Lovaas, moved his laboratory to UCLA’s psychology department. About 10 years later, faculty members in the occupational therapy department at USC, including Jean Ayres and Lorna Jean King, began experimenting with various sensory interventions to treat vestibular and tactile sensitivities.
The work of these and other pioneers led to major advances over the next five decades in our understanding about biological, behavioral, and sensory issues in autism. For example:
- Researchers in the biological/medical area uncovered impairments in several systems. These include structural deficits, biochemical imbalances, and abnormal chemical and electrical activity in the nervous system; immune and metabolic dysfunction; gastrointestinal impairment; and microbiome and nutritional deficiencies.
- New versions of behavioral therapy emerged, with each emphasizing a different approach to fostering cognitive, communication, and social skills and reducing maladaptive behaviors. Some of these include Applied Behavior Analysis (ABA), Pivotal Response Training, Functional Communication, and Floortime.
- Sensory therapy expanded to treat sensory-specific issues, such as deep pressure (e.g., Temple Grandin’s hug machine), hearing (e.g., auditory integration training/Tomatis), tactile (e.g., brushing), vestibular (e.g., controlled swinging), and vision (e.g., ambient prisms and tinted lenses).
The transitional years
During Dr. Rimland’s last year, I moved to San Diego and we began planning the future for the Autism Research Institute. We wanted ARI to maintain its leadership role in the autism research community, and much of our discussion centered on medical/biomedical, sensory, and behavioral issues. Prior to this time, he and I had accumulated much experience, both independently and working together, in all three of these areas.
In addition to bringing attention to genetics, epigenetics, and neurology, Dr. Rimland pioneered the biomedical approach with Drs. Sidney Baker and Jon Pangborn. He also conducted much of the early research on vitamins and minerals, such as vitamin B6 and magnesium. Furthermore, he wrote extensively on healthy nutrition and restricted diets.
Dr. Rimland also helped establish the Autism Society of America, an organization whose mission included informing parents about the benefits of behavioral therapy. In addition, he had much respect for Temple Grandin and learned from her personal experiences dealing with sensory issues. He even wrote the foreword to her first book, Emergence: Labeled Autistic, which was later made into a movie on HBO.
For my part, I had been incredibly fortunate to work with many leaders in the autism field. At UCLA, Dr. Lovaas sponsored my undergraduate honors thesis, which was later published. In my thesis, I hypothesized a relationship between biology and behavior. I also learned a great deal about sensory processing from Temple Grandin, who I had known since our days together in graduate school, and was mentored by several pioneers in sensory processing including Lorna Jean King (vestibular, deep pressure), Guy Berard (hearing), and Melvin Kaplan (vision). During this time, I published some of the early autism research on hearing, vision, and deep pressure.
Starting in the mid-1990s, Dr. Rimland and I worked closely together to raise awareness of the biomedical perspective. Along with volunteers and contractors, we organized annual and semi-annual conferences, published five editions of a book on biomedical treatment approaches, and edited a book of success stories, in which six chapters were written by parents or grandparents who were also medical doctors. In addition, we posted online articles and videos, organized one to two think tanks a year, coordinated an active discussion group for scientists and physicians, and lectured on the biomedical perspective worldwide.
Given our interest in all three major domains—medical/biomedical, sensory, and behavioral—we soon realized that the next step was to encourage and support a multidisciplinary research agenda. In this way, integrating all three areas could spark a vibrant catalytic synergistic approach to understanding autism. Such a perspective could energize and expedite research on the underlying causes of autism and the most effective interventions.
Our first joint effort to bring the multidisciplinary perspective to the forefront had actually started 10 years earlier, when we developed the Autism Treatment Evaluation Checklist (ATEC). The ATEC was one of the first, if not the first, multidisciplinary assessment tools for autism. This 77-item checklist was designed to evaluate medical/ biomedical, sensory, and behavioral issues as well as higher-level systems such as speech/ language/communication, sociability, and cognitive awareness.
Many researchers have commented on the ATEC’s usefulness and validity, and it has been employed in numerous research studies. More than 500,000 parents and professionals have completed the ATEC. The checklist is available for no charge online and has been translated into 20 different languages.
ARI today: continuing Dr. Rimland’s legacy
Over the past 12 years, ARI has made great strides in encouraging, integrating, and supporting medical/biomedical, sensory, and behavioral research. We began funding more cutting-edge exploratory research. We also began to offer online webinars for parents and professionals, which led to producing continuing medical education webcasts specifically developed for physicians. In addition, we have written numerous articles and editorials, edited books, and lectured on all three areas of research worldwide. We continue to maintain ARI’s science newsletter, published quarterly since 1986, and to organize innovative and cutting-edge think tanks that are attracting increasing numbers of researchers.
Not a single puzzle, but many
The image of a puzzle is often used to represent the many components of autism. Our goal is to put more pieces on the table and then to fit them together, either tightly or loosely. What makes this task so challenging is that many of these pieces belong to more than one picture, because autism is a broad term that encompasses multiple subtypes. We are very hopeful that our current research into subtyping, an effort that builds and expands on decades of work done by giants in the field such as Dr. Rimland, will empower us to determine which pieces belong to which puzzles. As a result, we will be able to identify the most promising treatments and research avenues for each individual subtype—a breakthrough that we believe will once again revolutionize the field of autism.