Showing posts with label Autism Awareness. Show all posts
Showing posts with label Autism Awareness. Show all posts

December 7, 2006

Outing the Gay Republicans of Autism?

John Gilmore of A-CHAMP asks the question, should high profile closet DAN! families be outed?

I imagine everybody knows about the problem of the gay Republican politician. There are lots gay Republican politicians, but to be a good Republican these days you have to denounce anything that smacks of homosexuality. This, of course, leads to all kinds of hypocrisy. The gay community is divided about whether these people should be outed or not.

We have a similar problem in the autism movement, and those are the leaders of large autism organizations who refuse to acknowledge that there is an epidemic, refuse to spend any of the money that they have extracted from this community on anything related to vaccine safety issues, mercury or any of the methodologies being investigated by DAN and related researchers.

But at the same time they are taking their own affected children to DAN doctors, chelating their kids, getting them scoped by Wakefield or Krigsman, and refusing vaccines for their children. Are they liars? Are they hypocrites? Are they the people who will get us to where we need to go? And what should be done by the rest of us with our own "gay Republicans." Should we ask them to explain themselves? Is the discrepancy between their public actions and statements and their private actions anybody else's business. Are we not allowed to ask them what they are doing in Arthur Krigsman's waiting room when their organizations won't even acknowledge that GI issues are part of autism. Are we being complicit in hypocrisy by remaining silent?


Update:

I have been thinkin' a little about this and here are my initial thoughts.

I am thinking there are two different ethical scenarios. Because we are talking about children's medical information, I think that we need to be sure we don't step on children's rights.

I am thinking if a parent tells someone in confidence about their child's treatment, and asks that you keep it private, regardless of their public stance, you should not break that trust, unless there is some sort of mistreatment of a specific child going on.

However,

If you see a parent in a waiting room, I think that asking the question, "Why are you not preaching what you practice", is legit. I think that question should be asked in private first to give them the chance to really do some self-examination about the impact of their decision to with hold vital information from other parents who are looking to them as leaders for some direction as to what they should do for their own child.

But if they are given that opportunity and sufficient time to really come around, then I don't think I could condemn anyone who 'outed' them.

I think about this in the context of my own blogging. Now head of a multi-million dollar autism organization I ain't, but I have put myself (and my child to some extent) out in public. I have made myself a public figure (in the legal sense) by blogging. If I am unwilling to open myself up to scrutiny on the issues that I bring to the table, then I have no integrity.

If I encourage parents to look in one direction for treatment while I am pursuing another for my child, then shame on me.

...your thoughts?

December 4, 2006

The Age of Autism: What Newsweek Missed

The Age of Autism: What Newsweek missed
By DAN OLMSTED
UPI Senior Editor

WASHINGTON, Nov. 20 (UPI) -- Newsweek's cover story this week is about what happens to autistic kids when they grow up. The magazine does a good job of pointing to funding gaps and the plight of parents who can only imagine what will happen to their kids after they're gone.

But Newsweek fails to confront a key issue, one that bedevils mainstream publications every time they write about autism: Is it really increasing? Or are we just doing a better job of diagnosing the disorder?

Newsweek, without exactly saying it, comes down on the side of better diagnosis. " ... (M)ore sophisticated epidemiology has revealed the true magnitude of the problem," the magazine says. It also suggests the increase coincided with parents banding together "to raise awareness of a once rarely diagnosed, often overlooked disease."

Yet in a sidebar, Thomas Insel, director of the National Institute of Mental Health, says that as a psychiatrist in the 1970s he never saw a single person with autism. "In 1985, curiosity sent him searching; it took several phone calls to find a single patient," the article says.

Does today's "more sophisticated epidemiology" really square with Insel's experience? I don't believe it does; 1985 was hardly the dark ages of medical diagnosis. And autism was described as a distinct disorder more than 40 years before that -- concern already had arisen that it was becoming a trendy diagnosis, handed out too freely.

Yet Insel, obviously well-connected to the medical and psychiatric community, had to mount a virtual search party to find a single one?

The article goes on to say that NIMH is "newly interested in environmental factors that might set off the disorder in patients who are already genetically prone to it."

What does it mean to be "already genetically prone" to autism, yet have it triggered only after exposure to some outside factor? I'm not sure that makes sense. What does make sense is that some children might have a genetic inability to cope with that factor, triggering the "environmental insult" that leads to autism.

If such an exposure increased, it could certainly account for an increase in the autism rate. NIH officials are increasingly blunt about this, even if the media are not. At a recent meeting with a group of parents, according to several participants, the head of one NIH institute said: "There are no epidemic deniers here."

I'm told a second institute director said at another recent meeting that autism is primarily an "environmental" disease. An audience member's suggestion that genes alone explain the current rate was flatly dismissed by this official.

Because it doesn't connect the dots, Newsweek misses the point: We're in an epidemic, which is why the future of this generation is a crisis. The article's whole premise, however, inadvertently suggests the truth: There are now so many kids with autism -- "as many as 500,000 Americans under 21," the magazine says -- that caring for them as adults must be urgently addressed.

If there were already a comparable million-plus adults with the disorder, the issue would have been recognized years ago. To be sure, some autistic adults of all ages have been misdiagnosed over the years as retarded or mentally ill.

But if autism has held steady over the years, it shouldn't be hard to find thousands and thousands of clearly autistic people in their 30s, 40s, 50s -- even their 80s and 90s. The first child in the landmark 1943 study identifying autism, who was known as Donald T., is still alive at age 73. It was the striking uniqueness and novelty of such cases that prompted the study in the first place.

When NIMH's Insel went looking for cases in the 1980s, it seems autism was still pretty rare. It's not anymore -- as Newsweek points out, disorders on the autism "spectrum" now afflict as many as 1 in 166 children. Note: children. Where are the 1 in 166 autistic adults?

Until we stop ignoring the obvious, we're never going to stop this epidemic -- and find new and better treatments for people already afflicted.

And that's the most urgent issue of all.

December 2, 2006

Recovering Children on the Cutting Room Floor

Over the last two years I have heard this story told over and over again by parents. Interviewed by the media about the improvements their children have made using DAN! treatments, but the real story never makes it on the air.

I thought I would share one of these stories.

From Kendra Pettengill:

I just learned a very tough lesson.

When my daughter Keely and I were invited to the DAN conference I also got a call from a TV reporter. He was asked to do a story on Autism by his station, and it was to be big, several minutes worth on two consecutive nights. He wanted to highlight Keely and I and our success story.

He admitted to me he knew nothing about Autism. I sent him a 12 point paper pointing out what I feel are the 12 biggest issues in Autism. I told him straight up that his bosses would never allow him to tell the real story, and the last reporter that did in Texas lost her job. He assured me that they were family owned and he could do any story. I told him that he might be able to tell one of the twelve points, or maybe weave in two of them, but no more than that or it would be confusing, watered down, and wouldn't make the point.

He and a camera man came and spent an entire Saturday at our house. We poured our hearts out to him. I told them every detail of getting the diagnosis, her horrible symptoms, and the prediction of her ending in an institution by the age of 12 or 13. I talked abou how abandoned families are, that no treatments are offered here in Oregon and how we had to go it alone, with help from family only. I told him all about DAN and Keely's horrendous reactions to her vaccines, her near death and then Autism. How we started the GFCF diet and within two weeks she started talking. We then started her ABA program and progress exploded. And he met her, and interviewed her. Both he and the camera man seemed not just shocked by her condition and abilities but she charmed the hell out of them. She was, I can assure you on her A game. I gave them before and after videos as well as her diagnosis including graphic descriptions of her worst behaviors observed during diagnosis.

Dr. Rimland had sent a message that he would do a phone interview with the reporter. The reporter never followed up on that offer, missing a huge opportunity. But the story just aired Wednesday and Thursday nights and Keely and I were not included at all. The reporter apparently ran into the ND crowd in Eugene and gave two nights of fluff stories with people only mildly affected. Despite weeks of advertising this huge piece and two part series titled "THE AUTISM EXPLOSION", the epidemic and xplosion were never even mentioned. Causes, treatment, and especially recovery were not mentioned.

We were sold down the river. He didn't even have the journalistic integrity to tell me we were being left out of the story. Hundreds of people were waiting to see it. I am devastated, but I should have known better. You would not have known what the face of Autism looks like from this fluff. The worst journalism I have seen yet. I have written over 10 letters that friends and family and autism families are sending to KEZI as I cannot send them all in my name.

Keely has worked so hard, she is mainstreamed now in third grade, 100% independent, no pullouts, no aide, making Straight A's. I am so proud of her and how very far she has come. She deserved to be recognized and to help give families hope that recovery is possible and that there are treatments that can make a difference in the outcome of these kids. I cannot believe how ticked off I am.

Here is the information on the station reporter and the two pieces he did.

http://www.kezi.com/content/contentID/15480 (Part 1)

http://www.kezi.com/content/contentID/15492 (Part 2)

KEZI 9 News - Tristan Mcallister

He didn't say anything about Autism. They advertised constantly with this ominous music, "Tune in for our two part special, The Autism Explosion why the huge numbers in Oregon" and then never addressed it. They didn't even say what the numbers are, didn't as why. Just advertised that was the story, then showed two semi-interesting human interest stories.

I found out that he met up with the woman in the first part who is friends with the woman in the 2nd part. Her name is Nan Lester and to many of us in Oregon she is public enemy #1. She is pretty much in the ND camp. She has dictated policy to the local school district and other families are left to live with her view of things or go elsewhere. She interjects herself into anything Autism related in Eugene. She interrupts parents at school meetings and then smooths the ruffled feathers of school officials and tells them that a great job they are doing. I know families in Eugene homeschooling rather than subject their child to the Eugene programs dictated by Nan Lester. [ed. note - in a later email Ms. Pettingill reiterated her opinion of Ms. Lester, but says that her comment that she was public enemy number one, "might have been a little strong".]

The kids in this epidemic are not going to teach art classes or get a drivers license, or get married, nor does anyone have hopes of them being a Senator or President. They put forth a very narrow view of Autism, gave as my own mother said, "Zero information about anything to do with Autism", and left our story of overcoming all the odds and diversity, struggling as a single parent to provide programs for my daughter and having enormous success through biomedical, chelation, and ABA to where we are today, they left our story on the cutting room floor. Hundreds of people were watching to see how they would present Keely and I, and he completely left us out. Apparently causes, treatments, and potential recovery are just too controversial, but fluff is ok.

What a story of hope we could have been to parents not knowing what to do.

If anyone on this list wants to send a little note, send it to kezi@kezi.com.

Thanks everyone
Kendra

November 26, 2006

Professor Challenges Autism Assumption

Professor Challenges Autism Assumption: A Willamette U. researcher says the notion that autistic children often have low IQs is flawed
The Oregonian
STEVEN CARTER
Saturday, November 25, 2006

The conventional wisdom that children with autism are often mentally retarded may be wrong, according to research by a Willamette University professor.

Meredyth Goldberg Edelson, trained as a clinical child psychologist, has discovered that decades of literature linking autism with retardation were based on flawed assertions or contained no empirical research at all.

Mental retardation -- as contrasted with the less precise term "mentally disabled" -- is defined by professionals as a disability that occurs before age 18, characterized by an intelligence quotient under 70 and serious limitations in social and adaptive skills.

Goldberg Edelson reviewed 215 studies on autism, dating to 1937, which made 223 claims about the rates of mental retardation in autism. Only 58 of those claims were supported by data, she found, and most researchers stated their results without reporting how they measured intelligence.

Most of the studies that measured intelligence used tests that were inappropriate, Goldberg Edelson found.

"Many times, if the researchers had a child they couldn't test, they just assumed he or she was retarded and assigned a low IQ score," Goldberg Edelson said.

Autism is a developmental disability that causes problems with communications and social interaction. It is characterized by repetitive behavior and devotion to routine. The severity of symptoms varies widely. The cause is suspected to be complicated interactions between environmental and genetic factors that aren't fully understood.

A child's cognitive ability has never been part of the criteria for autism, but it is frequently mentioned as an associated characteristic. A widely used reference book, the "Diagnostic and Statistical Manual of Mental Disorders," says in most cases, autism is accompanied by mild to profound mental retardation. Other current literature says mental retardation accompanies autism in 67 percent to 90 percent of cases.

Goldberg Edelson, a psychology professor, came to autism research through her husband, Stephen M. Edelson, a researcher and author who was studying effective treatments for children with autism. He asked her to check the intelligence of the children in his tests.

Eventually, she tested 293 children and discovered that their IQ frequently was higher than had been determined by prior tests. Goldberg Edelson found that often the children had been given timed tests or tests that required them to follow verbal instructions or give verbal answers, conditions that are frequently hard for autistic children to deal with.

Goldberg Edelson used untimed tests that measured nonverbal intelligence. On average, the children scored a 90 -- near average -- on the IQ scale. Only 19 percent were within the range of mental retardation.

That prompted Edelson to examine the literature on autism.

She found that much of it wasn't legitimate research, and those studies that did assess intelligence were flawed in their methodology. Her results were published recently in Focus on Autism and Other Developmental Disabilities, a scholarly journal on autism.

Bertram Malle, an associate professor of psychology at the University of Oregon, said autism covers a wide spectrum of developmental disorders and some children with autism are highly intelligent.

"It's important for parents of autistic children to understand that there in a huge range of intellectual capacity and behavior," he said. "Some of the behavior is amenable to improvement.

Malle said he's seen cases in his own field, social psychology, in which long-held assertions turn out not to be valid. "Sometimes stereotypical beliefs are held on to," he said. "You make a claim, it's not challenged, and then the claim is repeated to the point that it becomes generally accepted."

Goldberg Edelson said it's clear that the real rate of mental retardation among autistic individuals isn't known. "I think we need to go back to the beginning and find out just what we do and do not know about autism and mental retardation, she siad.

Goldberg Edelson, 45, said she hopes that her research helps prevent therapists and educators from setting artificially low expectations for children with autism.

"In the 1950s, children with autism were institutionalized," she said. "If most children with autism aren't mentally retarded, we need to find ways for them to interact with society and help them become all they can."

Steven Carter: 503-221-8521

November 22, 2006

Death of a Hero





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.

November 13, 2006

From PutChildrenFirst.com

Press Briefing:

Thank you all for your time today. My name is JB Handley. Along with
my wife, Lisa, I am the co-founder of putchildrenfirst, the sponsor
of this survey of over 9,000 Americans on mercury in the flu shot.
Here's a quick test for all of you. We all know household paint is a
bit toxic. Would you rather A, spill some paint on your skin? Or, B,
take that same amount of paint, pop it in a syringe, and mainline it?
If you chose A, as our survey revealed, you are like most Americans.
If you chose B, you're like the FDA, who made it a high priority to
get mercury out of topical products we use on our skin in the 1990s,
but continued to allow mercury to be injected into humans at levels
exceeding any available safety standard. In fact, we don't even have
safety standards for injected mercury, because no one considered
someone would be crazy enough to inject a well-known neurotoxin into
their bloodstream. It's actually the preposterous nature of the
situation we find ourselves in today that contributes to the public's
confusion. I find that the first time I tell people mercury is in
their flu shot, they simply don't believe me.

Our health authorities realized mercury in vaccines was a mistake in
1999 and made a public statement to warn Americans and encourage
manufacturers to change their formulations. Seven years later, we're
still talking about mercury. That's part of the problem. Our survey
showed that almost no one realizes mercury is STILL in over 90% of
this year's flu shot supply. When they find out the truth, more than
three-quarters know to stay away from mercury and even more think
children and pregnant women should avoid it.

The CDC provides a number of answers for why mercury is still used in
vaccines, none of which can be supported with any facts or evidence.
They will characterize Thimerosal's toxicity as theoretical when in
fact there is nothing theoretical about mercury's dangers. They will
tell you ethyl-mercury, the kind used in Thimerosal, is less toxic.
There is no data to support this and in fact a recent biological
study disproved this completely. They will tell you that the flu can
kill which should certainly trump any danger posed by mercury. Yet,
they fail to mention their own recent admission in an October 2006
study in the Journal of the American Medical Association where four
CDC authors write: "It is also important to note that there is scant
data on the efficacy and effectiveness of influenza vaccine in young
children." And a British Medical Journal article the same month,
October 2006, noted "Evidence from systematic reviews shows that
[flu vaccines] have little or no effect on the effects measured." If
a company sold a product that didn't work and left behind a
neurotoxin they would already be bankrupt.

Anytime Thimerosal is mentioned, autism is brought up. We are not
here to talk about autism today. We are here to tell you that
Americans do not want mercury in their shots but few know it's there.
The CDC tries to make an argument that because they believe, through
their research, that Thimerosal is not responsible for the autism
epidemic, that makes Thimerosal safe. That is one high threshold for
safety. Interestingly, CDC never mentions that in the 2003 study they
authored in Pediatrics, they did find a correlation between
Thimerosal and both "tics" and "language delay." So, here's another
test for you. You bring your child in for a flu shot. The Doctor
tells you this shot has mercury, and that CDC found shots with
mercury lead to tics and language delay. What do you do?

The CDC wants you, the journalists, to report on the dire need for
all Americans to get a flu shot. In 2004, at a Vaccine Summit, the
British Medical Journal wrote the following, in criticizing what they
called the CDC's "marketing of fear"
"Glen Nowak, associate director for communications at the NIP, spoke
on using the media to boost demand for the vaccine. One step of
a "Seven-Step `Recipe' for Generating Interest in, and Demand for,
Flu Vaccination" occurs when "medical experts and public health
authorities publicly...state concern and alarm (and predict dire
outcomes) - and urge influenza vaccination"

My four year old son suffered an adverse reaction to a mercury
containing flu shot. That's why I'm here talking to you. His symptoms
included, and I quote, "brain damage, incoordination, seizures,
inability to speak and problems of his nervous and digestive system."
Those were my son's symptoms, but that quote is not from his medical
records. It's from the CDC's own website, discussing the harmful side-
effects of mercury, where they go on to warn all Americans to "keep
all mercury-containing medicines away from children."

Our survey proves that Americans understand this. Why doesn't the CDC?