A quarterly publication of the Autism Research Institute

The Autism Research Review International is quarterly publication of the Autism Research Institute

Fall, 2017 | Number 4, Volume 31

Editorial – ARI’s Legacy: The Perspective of Researchers

by Stephen M. Edelson, Ph.D.

On ARI’s 50th anniversary in 2017, we asked leading researchers in the autism field to share their stories about what ARI has meant to them. Here are their responses.

James Adams, Ph.D., Arizona State University 

ARI has been the most important influence on both my role as a father of a daughter with autism and as an autism researcher. For over two decades, I have benefitted tremendously from the workshops, think tanks, newsletters, and webinars that ARI has organized. For my daughter, I have learned about many different treatment options and tried many of them, and over time she has made substantial progress and is now a happy adult working part-time with a great loving relationship with her family. 

For my research, I have benefited tremendously from interactions with top clinicians and researchers, and working together with them on new research studies that are moving us closer to finding the causes of autism, how to prevent it, and how to treat it. ARI’s seed grant funding has been of tremendous help—for example, one seed grant of $30,000 from ARI led to a $300,000 grant from our university, followed by a $1.3 million federal grant. Overall, Bernie Rimland and Steve Edelson are two leading heroes of the autism community

David G. Amaral, Ph.D., University of California, Davis 

Bernie Rimland’s Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior figured prominently in my early education as an autism researcher. His attempt through the Autism Research Institute to establish subtypes of autism and move rapidly to targeted treatments has also influenced the research program of the UC Davis MIND Institute, another parent-initiated research effort. I congratulate Dr. Edelson on maintaining and expanding the programs of the Autism Research Institute and hope, like the parents of the MIND Institute, that it will not need to go another 50 years before effective treatments for the disabilities of autism are found.

Sidney M. Baker, M.D. 

Bernard Rimland debunked the refrigerator mom consensus. His reward was the gratitude of children, parents, practitioners, and scientists who followed him into ARI’s collaborative view of nutritional, toxicological, and immunological paths to healing when common sense is focused on the individual. It simply would not have happened without his voice, hand, and heart. Thank you, Bernie.

Margaret L. Bauman, M.D., Boston University Medical Center 

From the beginning, the focus of ARI was to provide a forum through which clinical and basic science research could be encouraged and sponsored, and directed toward the identification of potential causes and effective treatments. This institution continues to stand as a testament to Dr. Rimland’s early work, as well as his foresight and dedication to finding answers relative to the autism spectrum disorders, a legacy that lives on through the many families he has encouraged and supported, as well as through the many avenues of research that he fostered throughout his lifetime. Based on the past work of its founder, a man who was ahead of his time, ARI continues to play a significant role in supporting clinical and basic science research and continues to work toward expanding our understanding of this complex disorder now known as the autism spectrum disorders. Dr. Rimland’s life-long impact on ASD lives on as reflected by the clinical and research efforts that ARI continues to pursue and support.

Manuel Casanova, M.D., University of South Carolina School of Medicine, Greenville 

Autism is now recognized as a neurodevelopmental condition. This was not always the case. Several decades ago, one man stood against the prevailing views of psychoanalytically inclined health professionals and, in the end, changed public and medical opinion. This man, Bernard Rimland, became a one-stop center for those parents and patients who needed help and information in regard to autism. Rimland’s legacy lives in the Autism Research Institute (ARI), an organization he started in order to improve the health and well-being of people on the autism spectrum through research and education. Fifty years after its foundation, the ARI has given a voice to autistic individuals through legislation, education, research, health care, accommodations, and employment at a global level. I look forward to the next fifty years of ARI’s pace-setting accomplishments.

Mary Coleman, M.D., Foundation for Autism Research, Sarasota, Florida 

Bernie Rimland’s book (Infantile Autism, 1964) was handed to me by my chief of pediatric neurology and that is how I got involved in autism. As soon as I examined my first autism patients, I realized that my chief was correct to give me that book—autism clearly was a pediatric neurological disorder, not a disorder caused by inadequate mothering. Bernie later helped find patients to participate in my famous study of 100 patients and 100 carefully matched controls (The Autistic Syndromes, 1976) that established that autism was more than one disease and identified several biochemical subgroups. 

Sidney M. Finegold, M.D., Veteran’s Administration / University of California at Los Angeles 

I know ARI from the viewpoint of a researcher who sees the kids’ stools but not the kids, and I have been rescued from “drowning” by ARI on more than one occasion. It’s always a pleasure to get together with the ARI group, a most impressive warm group of investigators.

Temple Grandin, Ph.D., Emergence: Labeled Autistic Thinking in Pictures 

The Autism Research Institute has been a pioneer in both the understanding and treatment of autism. When I was looking for information on autism during the 1970s, ARI was one of the few places where I could find it. Bernard Rimland was definitely ahead of his time.

Jon B. Pangborn, Ph.D., Ch.E., FAIC (emeritus) 

Thanks to the Autism Research Institute, autism came to be understood as primarily a medical rather than a psychological problem. Through the efforts of ARI and its parentdoctor organization, “Defeat Autism Now!” (DAN!), autistic individuals were more likely to be treated effectively, and parents were less often blamed for the condition. DAN! clinicians noted high correlations of autistic behavior with toxic exposures of various types—pesticides, herbicides, fungicides, heavy metals, and other environmental insults. Digestive problems, including intestinal yeast overgrowth, food allergies/ intolerances, and digestive enzyme insufficiency, together with poor diet and nutritional deficiency, are now treated as necessary by knowledgeable clinicians. In doing so, the “gut-brain connection” is being addressed as best we are able for individuals on the autism spectrum.

Judy Van de Water, Ph.D., University of California, Davis 

ARI can be credited with many things over the course of its 50 years as an organization, but to those working in autism research, it has been a cornerstone for the concept of a biologic approach to understanding ASD. As a researcher investigating the immunobiology of ASD, ARI has provided me with the ability to interact with clinicians and explore an integrated approach to autism research, as well as offering a conduit for information sharing at a high level amongst the autism community. ARI has supported novel research ideas that have driven the field toward an expanded view of both the causes and treatments for ASD, to great success. It is the ability of an organization to think outside the box that has benefited so many families. 

Harland Winter, M.D., Massachusetts General Hospital for Children

The Autism Research Institute is celebrating 50 years of supporting families and individuals with autism. Beginning at a time when there was little knowledge about what causes autism and how to improve the lives of individuals with autism, ARI advocated and provided the voice for these families. As the scientific community began to understand more about central nervous system function and the impact of medical conditions on behavior, ARI has supported research that enables clinicians to better care for their patients. 

Through its leadership, ARI continues its advocacy by providing bridges between patients, families, healthcare providers, and investigators. We are all grateful for your ongoing support and for enabling the autism community to be heard.