Dr. Bernard Rimland is autism's worst enemy
Devastated by his child's diagnosis decades ago, Rimland is dedicated to destroying the developmental disorder.
San Diego Jewish Journal
To the casual passerby, the small storefront office on Adams Avenue in Kensington appears closed in the late afternoon. The blinds are drawn, the lights are out and the door is shut. Official office hours for the Autism Research Institute are 8 a.m. to noon.
Yet, on the other side of the door, there is a flurry of activity. The phone rings constantly. Parent after parent leaves messages begging for information. Researchers and clinicians from all over the world call seeking input and confirmation. Faxes come in with orders for books, newsletters and videos.
The office shows the wear and tear of this activity. There are papers everywhere, some in neatly stacked and labeled piles, others in overflowing boxes. Every square inch of the wall space is covered with photos of famous people, including one of the film Rain Man signed by actor Dustin Hoffman.
Sitting calmly in the center of all this is the man who people are calling from all around the world to reach - Dr. Bernard Rimland. What makes this scene even more amazing is that Rimland, now 73, has been retired for 17 years. And yet this bearded, grandfatherly man with graying hair works weekends, holidays and evenings - he never seems to stop working, except to spend time with his family.
When Rimland's son Mark was born 46 years ago - and diagnosed with autism - Dr. Rimland set off on an impassioned quest to discover the cause of the developmental disorder and to locate any emerging treatments. That odyssey led him to become one of the most known, revered and controversial figures in the fight against autism, a perspective that varies widely depending on whom you speak to. He has written a landmark book (Infantile Autism, 1964), spoken to thousands of professional groups, founded several organizations (including The Autism Research Institute and Defeat Autism Now!, as well as the Autism Society of America), mentored many authors and comforted thousands of concerned parents.
"I consider Dr. Rimland the 'grand godfather' of the movement for understanding the biological treatment of autism," writes Dr. Jaquelyn McCandless, MD, in her book Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder. "[His] willingness to share information about autism's biological nature and ways to help our children affected by autism merits respect and appreciation."
"Although Dr. Rimland is an internationally recognized authority on autism, he still takes time to talk to parents and professionals who need his assistance," writes Lynn Hamilton in her book Facing Autism: Giving Parents Reasons for Hope and Guidance for Help.
But some in the medical establishment have questioned Rimland's contributions to autism research. Bennett Leventhal, a professor of child psychiatry and pediatrics at the University of Chicago, commented on Rimland's assertion that autism is increasing and that vaccinations might play a role in autism with a one-word response. "Rubbish," he told the Chicago Sun-Times in 1995. While Rimland's assertion about increased cases of autism has proven correct, the vaccination debate rages on.
Yet Rimland perseveres. For the first 31 years of his autism advocacy, he devoted all his spare time to finding the true cause of this devastating neurological disorder and help for those who suffer from it. Once he "retired," his work on autism became a full-time crusade.
Now, after five decades, Rimland can look back at his quest and reflect on his journey, its highs and lows as well as the future of autism research.
The Path of a Fighter
Rimland's story is typical of an immigrant family. Rimland's mother and father both came from Russia after World War I. They met in Cleveland, Ohio, married and had a son and daughter (who died recently). Another world war caused the Rimlands to move, this time to San Diego, where his father had a metalworking job with Convair. From the minute he stepped off the train at age 12, Rimland fell in love with San Diego.
"Cleveland had been muggy and dirty," he recalls in a low, unassuming voice. "I got here and said, 'This is heaven, I'm never leaving.'"
He was raised in an Orthodox Jewish home, but "I've always had my own view of the world and religion," he says of his faith. "I'm a fiercely independent thinker. At this point, I would say that I am somewhat observant."
Despite his parents' disdain for higher education - they claimed college was "for the children of the rich" - his sister went on to get a Master's in education, while Rimland earned a Master's in psychology at SDSU, then capped that with a doctorate from Penn State in experimental psychology and research design.
Psychology wasn't his first choice. He initially wanted to be a writer or an engineer/inventor (he does hold five patents in various fields). When he took a class in psychology at SDSU during his undergraduate years, he became hooked on psychological testing and measurement on a scientific basis. His parents were unimpressed by his career choice.
How could a man, raised in a traditional blue-collar family, have chosen to go against his parents' wishes? It's as though he was born a fighter.
"My mother used to tell me about one of her brothers who was a mathematical genius," says Rimland. "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."
After college, life seemed almost idyllic. He married Gloria, the sister of a childhood friend, in 1951 (they celebrated 50 years together last year). In 1953, he received his Ph.D. and landed a position in Pt. Loma with the Navy at its Personnel and Training Research Laboratory as the director of the Personnel Measurement Research Department.
Fascinated by how one determines what is true, or probably true, his position allowed him to delve into the methodology of behavioral science. This pursuit of objectivity carries with him to this day. Then in 1956, the Rimlands welcomed their first child, Mark, into the world. But after his birth, nothing would ever be the same again. While Rimland fought his parents over his future, he would soon fight the world over his son's.
A Father First
From the moment Mark was born, everyone noticed he was different," recalls Rimland. "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."
Using one of Gloria's college textbooks, Bernard diagnosed his 2-year-old son Mark with infantile autism, a diagnosis soon confirmed by their pediatrician. This surprised Rimland, who, already five years past his graduate work in psychology, had never heard of this mysterious disorder.
Autism is a severely handicapping disorder that begins at birth or within the first 2 1/2 years of life. Affected children seem to retreat into a world of their own, making little contact with others - including their family. Autistic children often have delayed language (if they acquire it at all), repetitious behaviors, little eye contact and an aversion to social interaction. It's often called the "lost child syndrome."
Being a scientist, Rimland began studying the disorder, only to discover that the scientific community - mostly due to the work of influential childhood behaviorist Bruno Bettelheim - blamed autism on the mother. According to Bettelheim, cold and unfeeling "refrigerator mothers" caused normal children to retreat into their own world.
Knowing his wife to be a loving mother, Rimland found this claim to be ridiculous. Angered, he set out to uncover the truth. He visited libraries all over the country, depending on his near photographic memory in a day before copy machines were readily available. He had articles from other countries translated. He spoke to doctor after doctor.
Whenever a door would close, he would pound on doors until another opened. "When I started my quest, autism was no less than an obsession," he writes in The Modern History of Autism. "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."
After five years, his notes filled almost 400 pages. His wife told him he didn't have a paper, but a book. Rimland submitted it in a publishing contest for "distinguished contribution to psychology," and won. In 1964, Infantile Autism: The Syndrome and Its Implications revolutionized how science viewed autism. Instead of blaming the mother and looking no further, now science viewed autism as a cognitive disorder and began seeking its biological nature. While the medical community generally ignored the book at first, its popularity with psychology students made it a huge hit. A college librarian once told Rimland his book was the one most stolen book off the shelves. Today, it's considered a classic by doctors and psychologists.
After the publication of his book, hundreds of parents began contacting him in their search for answers concerning their children. Long after his workday at the Navy finished, he would answer letters and phone calls. In 1967, he founded the nonprofit Institute for Child Behavior Research (now the Autism Research Institute) to further distribute the latest information on autism research.
The ARI is a worldwide network of parents and professionals concerned with analyzing the scientific data for diagnosing, treating and preventing autism. It disseminates research findings to parents and publishes a quarterly newsletter that covers biological and educational advances in autism research. The newsletter is sent to more than 6,000 subscribers in 50 countries.
The response from parents has been enthusiastic gratitude. One of those is Josh Greenfield, father of an autistic child and author of A Child Called Noah. He writes, "Dr. Bernard Rimland perhaps has done more for the cause of autistic children in America than any other single person."
The Fight Continues
Today, Rimland is the father of three grown children (his daughter and younger son are not autistic). Retired, he now devotes all his energy to autism research. Among his many accomplishments is serving as the technical advisor to the Oscar-winning film Rain Man, which brought autism to the public's attention (his son, Mark, now an accomplished artist, was also one of the models for Dustin Hoffman's character).
Rimland has developed megavitamin therapy, and has explored and promoted other alternative autism treatments. But nothing has been easy. He's had to fight the medical establishment on everything from Applied Behavior Analysis, a behavior modification training, to vaccinations, which he believes contributes to the current increase in autism cases.
"The enormous increase in the number of mandatory vaccines children are required to have before the age of 2, rising from three in the 1940s to 22 today, is a major cause not only of autism and ADHD, but also of asthma, allergies and childhood diabetes," he contends. He also indicts nutritional and environmental pollution.
At one time, the medical community denied the existence of this increase. Dr. Eric Fombonne, in the journal Pediatrics, said that the sharp rise in cases is largely an illusion. He claimed that the increasing population and changes in diagnostic accuracy are the real culprits. Later, in the face of overwhelming statistics, Fombonne has now admitted the increase is real.
"It was only 10 years ago that autism was thought to be a rare disorder affecting only 1 in 10,000 persons," says Greg Fletcher, president of the San Diego Chapter of the Autism Society of America. "And just five years ago, researchers estimated that 1 in 500 individuals had autism. Today, researchers believe this number may be closer to 3 in 500. Which equates to as many as 1.5 million individuals in the United States that have some form of autism today. It is estimated that autism is increasing at the rate of 10 to 17 percent each year - faster than any disability or disease. At this rate, by the end of the decade, autism will surpass mental retardation as the most common developmental disability."
Despite the medical establishment's insistence that vaccinations play no part in increase in autism, Rimland stands firm in his belief. "The rational theory is that vaccines, which contain live viruses, mercury and other toxins, have caused the increase. There's no question this is controversial. You wouldn't expect the federal government, the American Medical Association or the American Pediatric Association, which have backed vaccinations for years, to agree. Their very reputation and credibility is at stake."
Instead of continuing to fight the medical community, Rimland took his message to the parents, who responded enthusiastically. And an interesting thing happened along the way - doctors with autistic children started coming to ARI for advice when the medical community couldn't help them. That's when he established Defeat Autism Now! (DAN!®), which brings together physicians and scientists to develop advanced methods of diagnosis and treatment.
"The medical establishment has got to be dragged kicking and screaming into reality," he says of the opposition he faces in the medical community. "Physicians are trained to believe that drugs are the answers and anyone who believes otherwise is a quack. Now, many of these doctors are turning their backs on the medical establishment and using the DAN! approach. We're getting a lot of support from parents who are doctors."
For Rimland, the most important thing he can do is take his training in methodology and apply it to the field of autism. When reports of a new treatment arise, he quickly uses science to confirm its validity. "There are many, many treatments out there," he says. "Some are useless, but we have to find out which ones work. The government would want to take years to prove what works, but parents can't wait for years."
And that's what keeps him going. He describes himself as obsessed by autism, and one look at his office and the hours he keeps proves it. But even now, 40-plus years into the battle, he's not done yet.
"Not when more and more kids are improving," he says, almost matter-of-factly of his continued fight. "I'm pleased with our success. But the answer isn't here yet - the problem isn't solved. We're getting there. We've made bigger strides in the last five years than in the last 50. So we're obviously going in the right direction."
Dr. Rimland can be reached at the Autism Research Institute, 4182 Adams Ave., San Diego, CA 92116 or by calling (619) 563-6840 or visiting www.autism.com/ari.
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