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Death of a Hero

Posted Sep 12 2008 11:30am




Bernard Rimland was one of my heroes.

If not for him I might be called a Refrigerator Mother.

If not for him Chandler may never have answered to his own name.

That he had the courage in the 60's to stand up to the establishment and say that his son had a medical illness, not psychological scars, changed the paradigm and began the search for treatments. And the first treatment that was found, was not discovered by Dr. Rimland himself, but mothers who began writing to him after his book was published to tell him that their children seemed to get better when they were on B vitamins. He listened to them, and Kirkland Labs listened to him, and the first real study on what would help our children was launched.

It was because he freed those mothers from the guilt that their children's disorder was caused by their lack of love that they could start finding a way to help their children.

If there is ANY justice in this world, Dr. Bernard Rimland will get the Nobel Prize.

The Autism Research Institute

UPDATE:

Autism World Loses A Giant: Bernard Rimland

Autistic children and their parents said goodbye to their best friend and greatest champion on Tuesday, November 21st when Dr. Bernard Rimland, founder and director of the Autism Research Institute, passed away at the age of 78.

Dr. Stephen M. Edelson, who is assuming the position of Director of ARI, says, “Dr. Rimland will go down in history as the person who ended the ‘dark ages’ of autism and spearheaded the fight to bring hope and help to autistic children. When he began his work in the field of autism in the 1960s, psychiatrists blamed parents for their children’s autism, institutionalized those children, and ‘treated’ them by drugging them into submission. Today, autistic children receive effective educational interventions and biomedical treatments that bring about dramatic improvement and often even recovery. At every step of this revolution, Dr. Rimland led the way—and at every step, he had to fight tooth-and-nail against an establishment determined to maintain the status quo.”

Dr. Rimland’s forty years of work on behalf of autistic children began with a single child: his own son, Mark Rimland, born in 1956. In the most recent version of the DAN! treatment manual, Dr. Rimland wrote, “Mark was a screaming, implacable infant who resisted being cuddled and struggled against being picked up. He also struggled against being put down. Our pediatrician, Dr. Black, who had been in practice for 35 years, had never seen nor heard of a child like Mark. Neither Dr. Black nor I, who at that time was three years beyond my Ph.D. in psychology, had ever seen or heard the word ‘autism.’”

It wasn’t until Mark turned two that Dr. Rimland’s wife, Gloria, remembered reading in college about children with symptoms like their child’s. Digging through a dusty box of Gloria’s textbooks in the garage, Dr. Rimland saw the word “autism” for the first time. That discovery was the first step in a quest that covered nearly half a century.

Dr. Rimland’s battle to help autistic children began in the early 1960s, when psychoanalysis reigned and professionals believed that autism stemmed from a “refrigerator mother’s” subconscious rejection of her child. Treatments, prescribed by leading authority Bruno Bettelheim and other psychoanalysts, included having children kick and spit on statues representing their mothers.

Knowing that Mark was a greatly loved child and that the “refrigerator mother” theory was both wrong and destructive, Dr. Rimland set out to discover all that was known about autism. He scoured libraries for articles on autism, including foreign articles he had translated, and found, as he noted later, “not a shred of evidence” to support the hypothesis that bad parenting caused autism.

What he discovered, instead, was powerful evidence that autism was a biological disorder—a fact that seems obvious now, but was revolutionary at the time. He outlined this evidence in his seminal book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, published in 1964. The book changed the autism world forever: it won the Century Award for distinguished contribution to psychology and, as one reporter put it, “blew Bettelheim’s theory all to hell.” For parents, the nightmare of being blamed for their children’s terrifying disorder was over.

Most people would be content to rest on their laurels at that point, but Dr. Rimland was barely getting warmed up. He’d revolutionized an entire field, but he still had no way to help his own son. So he formed the National Society for Autistic Children (NSAC), now known as the Autism Society of America. Through this group, parents of children with autism—a very rare disorder, at the time—could offer each other moral support and practical advice about which therapies worked and which didn’t.

Dr. Rimland started ASA in large part to promote “behavior modification” (now known as Applied Behavioral Analysis, or ABA), a treatment then being pioneered by a very controversial young psychologist named Ivar Lovaas. Authorities in the autism field scoffed at Lovaas’s claim that autistic children could be helped by something as simple and straightforward as behavior modification, but Dr. Rimland spread the word through NSAC and parents began fighting for this therapy for their children. Today, of course, ABA is the educational treatment of choice for autistic children, and many autistic children who receive early ABA improve dramatically.

Dr. Rimland knew, however, that educational treatments alone could not adequately address a devastating biological disorder such as autism. In 1967, he started the nonprofit Autism Research Institute in order to create a worldwide research center and clearinghouse for biomedical treatments (which barely existed at the time). In 1985, he retired from his career as a psychologist for the Navy to devote the remainder of his life to autism research.

The first treatment Dr. Rimland investigated, based on reports from parents of autistic children, was high-dose vitamin B6. Other authorities in the autism field considered the idea that a vitamin could correct a brain disorder to be preposterous, but time and research proved them wrong. To date, 22 studies (including 13 double-blind studies) show that vitamin B6, typically combined with magnesium, benefits a large percentage of autistic children.

“One of the most remarkable things about Dr. Rimland,” says Dr. Edelson, “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. If five or six parents reported, ‘DMG makes my child much better,’ he didn’t ignore them; instead, he organized a study to see if other children responded the same way. For a professional psychologist, even one who was the parent of an autistic child, this was a revolutionary viewpoint—and it’s a key reason why ARI has always led the way in identifying new treatments and uncovering the roots of autism.”

One important clue contributed by parents of autistic children put ARI squarely in the middle of a huge controversy: the debate about the safety of vaccines. Early in his work, Dr. Rimland received many reports of children who had no disability before receiving DPT vaccinations. As time went on, the number of reports snowballed, and included other vaccines. At the same time, as the number of vaccines received by children grew, autism rates began climbing relentlessly. When Dr. Rimland learned that most childhood vaccines contained thimerosal—a preservative that is nearly 50% mercury, a powerful neurotoxin—he realized that the escalating numbers of vaccines given to children could be the culprit behind skyrocketing rates of autism. His suspicions grew when he discovered that the symptoms of autism bear many similarities to the symptoms of mercury poisoning.

The medical establishment, not surprisingly, expressed great antagonism toward this theory. They turned a blind eye as well to strong evidence implicating wheat and milk proteins, persistent measles infection in the gut from MMR vaccines, and other environmental factors in causing or exacerbating autism. And they continued to scorn biomedical treatments, even when hundreds and eventually thousands of parents reported that these treatments worked – often dramatically. So Dr. Rimland began yet another new project, this time aimed at quickly identifying causes of autism and promoting the safe and effective treatments that mainstream medicine refused to investigate.

To accomplish this mission he created the Defeat Autism Now! (DAN!) project, jump-starting the project in 199- by bringing together dozens of the world’s leading researchers in different fields to create a state-of-the-art treatment plan and prioritize research goals. This small first meeting grew into a worldwide DAN! movement that now includes huge standing-room-only conferences, major research projects, a treatment manual, and hundreds of DAN!-trained physicians. A happy offshoot of this massive effort is the “Recovered Autistic Children” project, in which parents whose children improve or even recover because of DAN!-oriented treatment are spreading the word that “autism is treatable.” Dr. Rimland and Dr. Edelson also collaborated on Recovering Autistic Children, a book of stories about children who improved or recovered as a result of DAN!-oriented treatment.

In addition to these projects, Dr. Rimland served as a technical advisor for Rainman, the Academy-Award-winning film that introduced millions of moviegoers to the world of the autistic savant. As editor of the Autism Research Review International, now in its twentieth year of publication, he also provided parents and professionals with crucial information about autism treatments and research—as well as with his trademark editorials, often scorching in their condemnation of established medicine’s failure to help autistic children.

Dr. Rimland achieved worldwide fame and a reputation as a giant in his field, and his friends ranged from Hollywood stars to national media figures. Yet unlike many professionals, he didn’t know the meaning of an “ivory tower.” In his few free moments each day, he responded to letters, phone calls, faxes, and emails from thousands of distraught parents around the world. His vast network of friends knew him as an extraordinarily generous soul and an irrepressible “yenta,” whose greatest joy lay in bringing strangers together for the benefit of all. He was also a soft touch, incapable of saying “no” to any worthwhile cause—no matter how large or small. (The San Diego branch of the Autism Society was probably the only chapter whose Christmas party once featured an internationally-renowned autism researcher playing Santa Claus.)

How did Dr. Rimland find time to juggle enough huge projects for ten lifetimes, and also help out every friend (or stranger) who needed a hand? He spent seven days a week in his office. Some nights, he slept on the office floor. And everyone who worked with him knew that if the phone rang at 10 p.m., it was Dr. Rimland with another idea – often an earth-shaking one. (Not all of his ideas and interests involved autism. He owned several patents for inventions, and was an inveterate “tinkerer.”)

Dr. Rimland’s remarkable wife, Gloria, gracefully handled his nearly-impossible schedule while keeping a home with three children running smoothly. The autism community owes a huge debt of gratitude to Gloria Rimland for the inspiration and moral support she provided Dr. Rimland throughout the years – as well as her willingness to share her husband with an entire world of “autism parents.” The autism world sends its deep condolences to Gloria and to their children, Mark, Paul, and Helen.

“Our community is greatly diminished by the loss of Dr. Rimland,” says Dr. Edelson. “His legacy, however, will live on in the work of ARI and the DAN! project – and in the joy of families whose children, dismissed as ‘hopeless’ and ‘incurable’ by the medical establishment, are now leading happy, healthy, productive lives. It’s exactly the legacy that Dr. Rimland would want.

____________

A graveside memorial service will be held tomorrow, Wednesday, November 22,
at 2 pm on the Shalom Lawn at Greenwood Memorial Park in San Diego. The
public is welcome to attend.

In lieu of flowers, Dr. Rimland's family asks that donations be made to the
Autism Research Institute (4182 Adams Avenue, San Diego, CA 92116).
Donations can also be made online on ARI's website www.AutismResearchInstitute.com.


More coverage:

Bernard Rimland; psychologist 'ended the dark ages of autism'

By Jack Williams
STAFF WRITER
Union Tribune
November 22, 2006


Bernard Rimland, a psychologist whose unremitting quest for answers to
autism opened a new era of treatment and hope for victims of the brain
disorder, died of cancer yesterday. He was 78.

Dr. Rimland, executive director and founder of the Autism Research
Institute in Kensington, died at Victoria Special Care in El Cajon, said
Jean Walcher, a spokeswoman for the family.

In challenging the once-prevailing theory that the condition stemmed from
a mother's subconscious rejection of her child, Dr. Rimland found that
autism was a biological disorder. His evidence was outlined in his seminal
book, “Infantile Autism: The Syndrome and Its Implications for a Neural
Theory of Behavior,” published in 1964.

“Dr. Rimland will go down in history as the person who ended the dark ages
of autism and spearheaded the fight to bring hope and help to autistic
children,” said Dr. Stephen M. Edelson, his successor at the helm of the
Autism Research Institute.

As the father of an autistic son, Mark, born in 1956, Dr. Rimland began to
exhaustively research what at the time was a mystery to parents as well as
the medical profession.

In so doing, he once noted, there is “not a shred of evidence” to support
the hypothesis that indifferent parenting caused the disorder.

In 1967, while employed as a Navy psychologist, Dr. Rimland founded his
nonprofit institute a block from his home to create an international
source of research and information for biomedical treatments. When he
retired from his Navy job in 1985, he devoted the rest of his life to
autism research.

“Now I spend 80 hours a week on autism,” he told The San Diego
Union-Tribune in 1998.

“He was the pioneer who changed everything about the way autism is viewed;
parents and professionals owe him everything,” said Chantal Sicile-Kira,
an autism author and activist who has a 17-year-old son with the disorder.

“Bernie was like a god to parents like me,” Sicile-Kira said. “He's
revered all over the world for moving forward biomedical interventions
through research.”

Dr. Rimland created the National Society for Autistic Children, now known
as the Autism Society of America, to bring together parents of children
with autism and to promote a treatment known as Applied Behavior Analysis.
The latter, pioneered by psychologist Ivar Lavaas, has proved successful
as the educational treatment of choice for autistic children.

The national Centers for Disease Control and Prevention estimates that as
many as one in 166 Americans 21 or younger is afflicted with autism, which
affects children in different ways.

The variety of symptoms include withdrawal from human contact, sensory
confusion, parrotlike speech, a compulsion for sameness and a repetitive
self-stimulating behavior such as tapping teeth.

Sometimes the symptoms are accompanied by extraordinary talents, as in the
case of the autistic savant portrayed by Dustin Hoffman in the 1988
Academy Award-winning movie “Rain Man,” for which Dr. Rimland was a
technical adviser.

In the 1990s, Dr. Rimland expanded his influence by co-founding Defeat
Autism Now!, widely known as DAN!, which brought together dozens of the
world's leading researchers in diverse fields to define research goals and
pursue a state-of-the-art treatment plan.

The effort spawned annual conferences on both coasts, major research
projects, a treatment manual and hundreds of DAN!-trained physicians.

Dr. Rimland also reached parents and professionals as editor of a
newsletter, Autism Research Review International, updating readers on
treatments and research.

He was at the forefront of the controversial concept of vitamin therapy to
address autism, particularly high doses of B6. More than 20 studies show
that B6, typically combined with magnesium, benefits a large percentage of
autistic children, according to the Autism Research Institute.

Equally controversial was his suggestion that child vaccines containing
thimerosal, a preservative that is nearly 50 percent mercury, could
promote autism. His suspicions grew when he discovered that symptoms of
autism bear many similarities to the symptoms of mercury poisoning.

“Bernie wasn't afraid to have people say, 'Gosh, this guy's nuts; it's a
crazy idea,' ” Sicile-Kira said. “He felt that if it could be validated by
research it's worth trying so long as it's not going to hurt somebody.”

Dr. Rimland, a San Diegan since 1940, was born Nov. 15, 1928, in Cleveland.

In the early 1950s, he earned bachelor's and master's degrees in
experimental psychology at San Diego State College. He received a
doctorate in the discipline in 1954 from Pennsylvania State University.

As a research psychologist in the Navy, he designed tests to measure a
recruit's aptitude for various jobs. In 1955, he became an adjunct
professor in psychology at San Diego State.

When he became a first-time father in 1956, he began to seek solutions and
answers to his son's behavior.

“Mark was a screaming, implacable infant who resisted being cuddled and
struggled against being picked up. He also struggled against being put
down,” he later wrote.

After finding no psychological basis for the disorder in his research, he
devoted his free time to studying neuropsychology in an effort to
understand the physiological factors. His quest led to the manuscript for
“Infantile Autism,” which received the Award for Distinguished
Contribution to Psychology before it was published as a book.

Once the book was published, he was inundated with letters and calls from
parents.

“I will never stop until I have found the answer or die, whichever comes
first,” he told The San Diego Union in 1988. “I will find the answer, and
if living to be 150 is what it takes – I'll do that, too.”

In recent months, as he fought cancer that originally was diagnosed in the
prostate, Dr. Rimland was forced to reduce his workload. By the end of
July, he was doing what work he could from his home.

Survivors include his wife, Gloria; sons, Mark Rimland and Paul Rimland,
both of San Diego; daughter, Helen Landalf of Seattle; and two
grandchildren.

Services are scheduled for 2 p.m. today at Greenwood Memorial Park, 4300
Imperial Ave., San Diego.

Donations are suggested to The Autism Research Institute, 4182 Adams Ave.,
San Diego, CA 92116.

Jack Williams: (619) 542-4587; jack.williams@uniontrib.com


From USAAA:

This USAAA WeeklyNews Special Edition is dedicated to the memory of Dr. Bernard Rimland

by Lawrence P. Kaplan, PhD
Executive Director, USAAA

I first met Dr. Rimland about ten years ago at an autism conference. I never realized at that time how much he would have impacted my life today. After listening to his conference presentation, my wife and I were excited to learn that we were on the right track with biomedical interventions that we had implemented long before many parents started their journey with alternative medicine.

Fast forward to 2004. I sent Dr. Rimland a galley (an unformatted version of a book's manuscript) of Diagnosis Autism: Now What?, my book that would be published in 2005. Two months later, I received a call from Dr. Rimland endorsing the book as well as spending a considerable amount of time discussing the current autism research. It was after having this memorable discussion with Dr. Rimland that I knew that it was time to form USAAA. I just didn't know when USAAA would become a reality.

My last personal meeting with Dr. Rimland was in the Long Beach Westin Hotel restaurant at a DAN conference in October, 2005. He was sitting in a corner by himself, and I asked him if I might join him for a few minutes. We ended up talking for nearly an hour about how he wanted to form a roundtable group of many autism organizations, including USAAA, to strengthen our position in advancing the cause of including biomedical interventions and environmental research into legislation. For me, it was an invigorating conversation with a soft spoken, well respected individual who had done more for autism than anyone else in the last forty years.

That was the last time I spoke with Dr. Rimland. USAAA was officially founded in July of 2005. In almost a year and a half, we have hosted an international conference (last August); we are co-hosting the Autism Vancouver Biennial Congress next March; we publish a weekly email newsletter to over 50,000 subscribers, and; we are embarking on an exciting new research project in a few months. All of this was developed with the support and inspiration from Dr. Rimland.

His memory will be honored and cherished by all of us who were fortunate enough to know him, as well as the thousands who benefited from his creation of the world-renowned (Autism Research Institute).

We, at US Autism and Asperger Association, will not only remember the incredible dedication of Dr. Rimland and the impact he had on all of us, but will continue his quest to improve the lives of thousands of children with autism - bringing relief, hope, and even recovery to families worldwide.
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