Steve Edelson envisions autism research as a moving car. The chauffeurs of the car, making it move forwards or in the right direction, are people like Bernard Rimland or Temple Grandin. They are the great motivators that invite you to come in the car and share the ride with them. However, I have to believe that there are many other people responsible for keeping the car in working order and having it available whenever a trip is necessary. Among these people are Steve Edelson, Jane Johnson and Teri Arranga. In this blog I will gather some of my thoughts regarding Steve Edelson. I am somewhat motivated in this regard as Steve just came to visit my laboratory and, as I write this blog, he is leaving for the airport on his way back home to San Diego.
Figures: Steve Edelson during his recent visit to our laboratory. We had enough time to socialize at one of my favorite restaurants in Louisville, named Seviche.
Steve is the Executive Director of the Autism Research Institute (ARI) based in San Diego, CA (see http://www.autism.com/). He has encyclopedic knowledge about autism and has been involved in both research and parent advocacy programs for the last few decades. Just to say that whenever he comes, it provides ample opportunity to brainstorm about autism and try to trouble shoot some aspects of my own research.
Steve was born in Los Angeles, California some 55 years ago. He went to college at UCLA where he did his undergraduate thesis with Ole Ivar Lovaas on the self-injurious behaviors (SIB) of autistic individuals. This experience colored Steve’s life and even today SIBs remain one of his main preoccupations. Steve saw Lovaas as someone who had a strong character, but deeply cared about his patients, and then set out to make a huge difference in their lives. (Note: A little known fact is that Lovaas’ roommate while a graduate student at the University of Washington would be Bernard Rimland’s future brother-in-law).
From Los Angeles, Steve moved the University of Illinois to complete his graduate studies. It was there where he met the young student of animal husbandry named Temple Grandin. Their friendship still carries on today. Back then Temple was interested in writing her story (her first book «Emergence») for which she sought the editorial assistance of Bernard Rimland. It is a amazing that early on some of the people that went on to make a difference in the autism movement were closely connected,e.g., Bernard Rimland, Ivar Lovaas, Stephen Edelson, Temple Grandin.
Steve finished his MS and PhD in 4 years and left to teach at East LA. Back in California he started doing research with Bernard Rimland. However, his future wife, a clinical psychologist, received a good offer to go to Oregon and they both moved there. Steve continued his research affiliation with the Autism Research Institute and worked under the guidance of Bernard Rimland. He established a clinical research venture that focused on sensory integration problems. Among other studies he published on auditory integration training (AIT), on the issue of hand support for facilitated communication, prism lenses, and the hug (squeeze) machine. Besides his research endeavors he directed the Oregon chapter of the Autism Society of America (ASA) for the next 10 years. He also played a major role in the ASA being on their Panel of Professional Advisors, and once being named Volunteer of the Year in 2001 (Note: The Autism Society of America was established by Bernard Rimland in 1965 and for its first few years after inception shared the same mailing address as the Autism Research Institute).
In 2006, Steve learned of Bernie’s failing health and moved back to San Diego. He had many meeting with Bernie in setting the guidelines or the «big plan» that the ARI would follow on moving forwards after his death. Bernie died on November 2006 but his guiding hand is still felt in the presence of Steve Edelson.
Writing about Steve would be incomplete if I did not expand on the work done by the Autism Research Institute. This Institute has played a major role both as a parent advocacy organization and in its attempts at promoting research. The ARI probably has the biggest autism family network and database in the world and keeps members informed through a monthly newsletter. Primarily through Steve’s endeavors and travel, ARI has extended its mission around the world. The family network now includes people from Ghana, Colombia, Philippines, Canada, France, Italy, Chile, Japan, and Nigeria, just to name a few. Recently Steve helped organize the first International Scientific Congress on Autism in Moscow, Russia. (Note: Both Steve and Bernie are of Russian descent).
Stephen M Edelson, PhD has occasionally been confused with Stephen B Edelson, MD from Atlanta Georgia. The latter used to run the «Edelson Center for Environmental and Preventive Medicine» (see http://www.quackwatch.org/11Ind/edelson.html ). Although Edelson, the physician, was a DAN! doctor who used to see autistic patients, his office was closed after multiple claims of malpractice. Both men are not related.
When ny dughtee was diagnosed with PDD/NOS in 1988 the first book I read was Rimllnds 1964 book on autism. It was out of print and I wrote to Dr. Rimland and he sent me a photocopyed version of the entire book. It was his book, cited by Leo Kanner himself, that was the most important book that relegated Freudian theory to the ashcan of history. His important work can never be underestimated. Glad to see his work continuing under Dr. Edelson
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If you ever visit the ARI in San Diego there are still papers with Rimland’s annotations/suggestions for Temple Grandin’s book. At a minimum he was very generous of his time. Another anecdote is that for some time the ARI offered a copy of Rimland’s book for any donations over a certain amount to the ARI. Some people confusedly donated to CAN (which sounded similar to DAN, a program then sponsored by ARI) and then asked for their book from Rimland. Although their money went to a different organization, Rimland was always kind enough to send them a copy of his book.
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