Dr. Bernard Rimland passed away just a few days before this past Thanksgiving and will be mourned by many. At times controversial, always searching for answers, he changed the way autism was viewed worldwide. Those of us who knew him as Bernie will always feel a twinge of sorrow around this holiday, a reminder of how much we have to thank this pioneer who played David to the medical establishment’s Goliath. As research would prove, fighting Goliath was not a lost cause but a righteous endeavor.
The first time I heard Dr. Bernard Rimland’s name was the day after a visit with my son to a psychoanalyst for the only treatment on offer for autism in Paris at the time. The bookshelf in the waiting room included a few copies of ‘The Empty Fortress’ by Bruno Bettleheim, who believed that autism was a reaction to bad parenting and expounded the ‘refrigerator mother’ theory of autism.
Dr. Rimland’s book, ‘Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior’(1964), would have been a better choice in this psychoanalyst’s waiting room. In his book, Dr. Rimland lambasted the then generally held view that autism was a psychological disorder, brought on by cold and unloving parents. His conclusion was that autism was the result of biochemical defects underlain, perhaps, by a genetic predisposition, but ultimately triggered by environmental assaults. This book grew out of the research he did searching for answers when his son, Mark, born in 1956, displayed behaviors which are now easily recognizable as symptoms of autism but were rarely seen in those days.
The psychoanalyst I visited informed me that my son had autistic behaviors due to separation issues from breast feeding. This she gleaned form watching my son play with two round objects, and crawl across the floor in an attempt to retrieve one that he accidentally dropped. Following this Allen Woodyesque moment, and looking for some useful advice, I called an old friend and former colleague from a state hospital for the developmentally disabled in California. She gave me the telephone number for the Autism Research Institute, the non-profit founded by Dr.Bernard Rimland in 1967.
Many are familiar with Rimland and know that his autistic son, Mark (now 50 and an accomplished artist), was the impetus for Rimland making the field of autism his life’s work, yet few know from where he got his unrelenting fighting spirit. It most probably came from one of his maternal uncles. Rimland once recounted to a journalist from the San Diego Jewish Journal, “My mother used to tell me about one of her brothers who was a mathematical genius. During the war [World War I], an elderly Jewish gentleman was being harassed by German soldiers. My uncle interceded because he couldn’t stand the injustice. The soldiers beat him and left him there, bleeding to death. My mother would finish this story by telling me, ‘So don’t be like him!’ Instead, it inspired me to fight injustice.”
Dr. Rimland was born in Cleveland, Ohio in 1928. His parents were Russian immigrants who met in Cleveland, married and had a son and a daughter. World War I precipitated their move to the US, and it was another world war that precipitated their move to San Diego where his father had a metalworking job with Convair. From the minute he arrived at age 12, Rimland fell in love with San Diego. He once told a reporter “Cleveland had been muggy and dirty. I got here and said, ‘This is heaven, I’m never leaving.”
Although a college education was not considered a necessary or worthwhile pursuit by his blue-collar family, both Rimland and his sister went on to attend college and to earn graduate degrees. His sister earned a Master’s degree in education and Rimland earned a Master’s in psychology at San Diego State University. For those familiar with Rimland’s work and his fascination with research, methodology and the search for truth, it will come as no surprise that Rimland went on to earn a doctorate from Penn State in experimental psychology and research design.
In 1951, after college, Bernard married Gloria, the sister of a childhood friend. In 1953, after he received his Ph.D. he worked with the Navy at its Personnel and Training Research Laboratory in Point Loma, San Diego as the director of the Personnel Measurement Research Department.
When his son Mark was born, their tranquil life changed. “From the moment Mark was born, everyone noticed he was different,” Rimland recounted to a reporter. “He was always screaming at the top of his lungs and nothing would placate him. But no one knew what it was. The pediatricians threw up their hands.”
His wife, Gloria, remembered having read in one of her college textbooks about a child wandering around, staring into space, and appearing not to recognize people. Rimland’s first step into autism was into their garage to find that textbook packed away in box with other college momentos. In the book he found the term ‘infantile autism’ that described the characteristics his son was displaying. Rimland began studying the disorder, only to find that autism was blamed on ‘refrigerator mothers’ by most of the scientific community, mostly due to the work of Bruno Bettelhim. Knowing that Gloria was an affectionate and caring mother to Mark and his siblings (one brother and one sister) Rimland found this to be ridiculous. As a scientist, he decided to research everything that was out there on the topic.
For five years Rimland researched autism in the evenings after his Navy job, long before the internet and faxes, when even photocopy machines were not easily available. “When I started my quest, autism was no less than an obsession,” he once wrote. “I quickly read everything I could find on the subject and hungered for more. This was war. I envisioned autism as a powerful monster that had seized my child. I could afford no errors.”
At the end of five years he had about 400 pages of information amassed. He thought of publishing a paper, but his wife, Gloria, told him he had enough to write a book. Although the medical community for the most part ignored his book ‘Infantile Autism’ when it was first published, it is now considered a classic by doctors and psychologists (although perhaps not by French psychoanalysts). An interesting tidbit: ‘Infantile Autism’ was very popular with psychology students and Rimland was once told by a librarian that it was one of the most stolen books off the shelf.
After his book was published, Rimland started receiving hundreds of letters and phone calls from parents searching for answers concerning their children. After work at the Navy every day, he spent hours replying to these queries. He then started the nonprofit Autism Research Institute (ARI), originally named Institute for Child Behavior Research, in order to share the latest information on autism research with those interested. The ARI became a worldwide network of parents and professionals concerned with analyzing the scientific data for diagnosing, treating and preventing autism.
Dr. Rimland was often at odds with the medical establishment and in the middle of controversy. He was one of the first to conclude that the United States was undergoing an epidemic of autism, that diagnoses rates were climbing, and one of the first to state that mercury and vaccines as well as other environmental and dietary triggers could be a primary culprit in autism.
One of the first treatments investigated by Dr. Rimland was high dose vitamin B6 therapy, and he did this based on reports from parents of autistic children. Stephen Edelson, Ph.D, Dr. Rimland’s close friend and colleague for many years and now Director of ARI, told a reporter, “One of the most remarkable things about Dr. Rimland is that he realized in the early days that parents held many of the keys to solving the mystery of autism. From day one he listened to them and respected them – and he followed their lead.” He went on to say that ‘It’s a key reason why ARI has always led the way in identifying treatments and uncovering the roots of autism.”
Rimland was always putting people he knew in touch with one another if he thought they had something in common besides autism. After a while, I got used to receiving interesting calls from people in different time zones telling me Bernie had given them my phone number. Whenever I heard my fax machine after 10:00 pm, I knew it had to be Bernie sending me a document with some comments scribbled in the margins, either a sardonic remark or an observation about the contents of the document. I knew the phone would ring next, and it would be Bernie, wanting to discuss the fax.
One of Rimland’s major talents and accomplishments was taking an idea, getting people together, and putting that idea into action. In the 1960’s he started what is now the Autism Society of America with a few other parents in order to share information, provide moral support and, in large part, to promote applied behavior analysis – then known as behavior modification. In the 1990’s Rimland brought together leading researchers from different fields and created a think tank from which grew the now worldwide Defeat Autism Now! movement. Today, DAN! conferences take place a few times a year providing information to parents and training to medical professionals. Currently there are hundreds of DAN! trained physicians experienced in biomedical interventions. The idea that ‘autism in treatable’ is an off shoot of the DAN movement and part of Dr. Rimland’s legacy to all impacted by autism and their family.
Another of his many accomplishments is serving as the technical advisor to the Oscar-winning film Rain Man (1988). Although it is true that not all individuals with autism have an incredible talent as depicted in this movie, the film created much awareness about autism in an era when few people had ever seen a person with autism.
Despite all his long hours and importance in the autism community, Rimland was always available to provide encouragement to others, including unpublished and unknown authors. Although I had contacted the ARI a few times since I was given his phone number those many years ago in France, Bernie did not know me personally. Yet, when I sent him my book proposal for ‘Autism Spectrum Disorders’ hoping for some encouragement, he called me as soon as he received it and read it. It wasn’t late at night, but it was a Saturday ( the day after I had mailed it), and I remember my disbelief as I heard on the other end of the line “This is Dr. Bernie Rimland. Are you Chantal? I just got your book proposal and I had to call you right away. This needs to get published. What can I do to help?”
When I first visited Rimland in his office in San Diego, I walked by it a few times before realizing that this dusty old storefront is where he waged his daily battle against autism. The storefront is on Adams Street which is a gentrified and trendy part of town. ARI fits right in with the antique book stores, the vintage movie theater and hip restaurants. Trendy, Rimland was not, but his ideas, the work he generated, the research he supported and published, were. This is where new educational therapies, biomedical treatment and dietary interventions were discussed and where Defeat Autism Now! (DAN) had it’s beginnings. Inside, the disarray – piles of documents and boxes that covered every inch of floor and desk space – made me wonder how a man whose office looked so rumpled and disorganized could produce such detailed and exacting work. Perhaps the answer lies in what he told a reporter at the San Diego Union Tribune in 1988, “I will never stop until I have found the answer or die, which ever comes first. I will find the answer, and if living to be 150 is what it takes – I’ll do that, too.” Obviously, Bernie was a man on a mission to defeat autism, and he had no time for the details of every day life such as filed papers and a clean office..
If San Diego feels a little empty now that Bernie is no longer here, I take comfort in knowing that his family and ARI are. It is thanks to Gloria, his dedicated wife who took care of Mark, his siblings and the household schedule, that Dr. Rimland was able to devote so much of his waking time to research. At ARI, autism research and sharing of information continues. Dr. Stephen Edelson, who relocated to San Diego in May 2006, is now Director of ARI, and Matt Kabler, Rebecca McKenney, Mallie Odle, and Sue Field continue to keep ARI operations going.
In Paris, this past December, for the fist time, an international conference covering both biomedical treatments and applied behavior analysis took place, organized by the only DAN doctor in France. I miss Bernie, but I take comfort in knowing that before he passed away, he knew that his work was reaching and helping families in this country where the ‘refrigerator mother’ theory of autism is still accepted. Marian Wright Edelman, Founder of the Children’s Defense Fund, once said: “You really can change the world if you care enough.” Thank you, Bernie, for caring enough, not only for your son but for all of us.
This was first published in Spectrum Magazine, January 2007