World Autism Awareness Day: Autism Exists, Let's Celebrate? Even Though It's Killing our Children?

My regular readers already know how I feel about Autism Awarness Day/Month. Everyone is aware already, how about actually doing something about it? No... instead let's just wear blue and do nothing. Except, of course, give money to Autism Speaks. Their party budget is getting low and Geri Dawson has horses to feed.*

Anne Dachel makes the case yet again this year:

I have a hard time each year with AUTISM AWARENESS DAY/MONTH. This is the Fourth Annual International Autism Awareness Day. How long are we going to pretend that all this autism is normal and acceptable? Seriously, how bad do the numbers have to get?

A number of stories out in the news calling for the public to "celebrate" the day. Today is World Autism Awareness Day by Kristina Chew "Today, April 2, is the fourth annual World Autism Awareness Day, during which 'autism organizations around the world celebrate the day with unique fundraising and awareness-raising events.' "

Pueblo Chieftain: Blue balloons raise autism awareness, "The baby blue balloons that Jonah and his classmates at Beulah Heights Elementary School released were to celebrate the beginning of National Autism Awareness Month. The event is celebrated each April, while the World Autism Awareness Day is today."

Sioux Falls Argus Leader: 5 questions: Shedding light on autism, "The falls will be colored blue by lights in support of the Autism Speaks' global Light It Up Blue campaign to celebrate World Autism Awareness Day and Autism Awareness Month."

Lufkin Daily News: Peavy students working to raise autism awareness, "Because of the prominence of the disorder in boys, blue is the official color for autism awareness and the reason the entire Peavy campus was encouraged to don the color Friday to celebrate Autism Awareness Month."

Berkshires.com: Diversity Takes Center Stage in the Berkshires, "'We have so many people supporting this committee right now,' said MaryLee Daniels, director of the Berkshire office of the Department of Developmental Services, and committee member.

"BFAIR, BCArc, the list goes on as to how many organizations support this initiative. We especially want people to join us in celebrating three different months of diversity. Of course, last month was Black History month. This month is Developmental Disabilities month and next month is Autism Awareness month. We have so much to celebrate here."

What is there to celebrate?

Lots of stories are about lighting things up in blue for autism awareness. Lots of them talk about autism being a developmental disorder affecting one percent of children whose cause is unknown. This is done without any alarm or demand for answers. We have been conditioned to accept autism as the perpetual mystery.

As the parent of a son in his 20’s with autism, I’ve had several decades of experts knowing nothing about this disorder. Is this to be the epidemic without a cause?

Looming in the background is the reality of what autism is doing to us. As I listen to the dire predictions about the hard economic times we're in and the need for austerity, I have to ask how in the world we're going to address the needs of the generation of children with autism about to descend on America as adults.

Dr. Thomas Insel is the wet blanket in all this celebration, acceptance, and awareness of autism.

He's the head of the Interagency Autism Coordinating Committee created by Congress to deal with with the disorder and he says that 80 percent of Americans with autism are under the age of 18. He's warned us we have to prepare for a million dependent adults "who may be in need of significant services." The IACC now calls autism "a national health emergency."

Maybe a better name for April 2 is World Autism Emergency Day.

Anne Dachel
Media editor: Age of Autism

Anne is right. And I gotta wonder, exactly how long this PR BS is going to continue.

And the biomed community isn't even being remotely polite about this any more. These are the two images that are being passed around on facebook today:





Last year I began a new blog. Lives Lost to Autism. I got more than a little bit sick of the blatant fear mongering of death by diseases that are NOT killing Americans, like measles, while the deaths of our children caused by their autism go unlamented and ignored by health authorities.

Last year 10 children died of Pertussis and the response was a national campaign to get people vaccinated (both adults and children), new state vaccine mandates are being pushed through, and the press on it has been everywhere. Last year at least 27 children and adults died as a direct result of autism, and unless you are in the autism community, or one of these deaths happened in your town, you probably never knew it. Even then, it is always an isolated incident, yes? (There were 41 reported deaths following the pertussis vaccine last year, but that is a whole other story.)

And those 27 autism deaths are only the ones who came across my google alerts for "autism deaths" or "autism died" or "autism drowning." The test I use on how to include them is basically, "would this have happened to this this person was neurotypical?" Who knows how many more went unreported or didn't get picked up by google. I would love to quote an actual statistic on how often autism kills, or how their incidence of premature death compares to the general population, but no public health agency cares enough to track this.

But insurance companies, whose bottom lines are effected by deaths and actually need to know if autism is deadly, won't sell life insurance policies on children with autism younger than 10, because it is not a good risk for them. See the problem there?

Our precious ones drowned, were murdered by caretakers and loved ones, were shot by police, suffocated while being restrained, were hit by cars, burned to death in fires, died from neglect and were killed by seizures. A few of them even killed others during their own melt downs.

Bryan Nevins, age 20, died because, on a hot day, he could not simply open the door of a van and get out. His institutional caretaker was on her cell phone and forgot about him for five hours. She is in jail now.

Autism kills and our government could not give less of a damn.

Autism Speaks doesn't seem to want to make that point that autism kills more than whooping cough, because then the public might actually begin to see this as a public health emergency and demand results... and then were would AS be? The party financing would dry up. Better for them to let autism linger and keep sucking up cash from suckers as they pretend to do something about it. Autism Speaks has found quite the cash cow.

(Speaking of... Guidestar finally posted AS's 2009 tax returns... they took in 45.5 million, and less than a quarter of it went to grants to do what the purported purpose of the org is, "Autism Speaks (AS) funds research into the causes, prevention, treatment and cure for autism. AS raises public awareness about autism and its effects on individuals, families, and society. AS aims to bring the autism community together to urge government and the provate sector to take action to address this urgent global health crisis." Of the whole list, "autism awareness" is the only thing that I think they actually have accomplished since their inception.)

And HHS's admissions that yes, vaccines CAN AND DO CAUSE AUTISM would mean that HHS has been able to do something about this FOR YEARS and has not done it. It means that those vaccine cases can be avoided by screening for mitochondrial disorders, autoimmunity and toxicity, and treated early on if doctors were actually taught that "vaccine induced encephalopathy" exists and if recognized and treated immediately that it may minimize or even prevent many cases of autism from developing.

And that might also mean that the people who have been sitting on this information for years, and decades, might suffer some consequences.

But AS has decided to ignore HHS's own claims of vaccine autism causation and openly declared that everyone should stop talking about the vaccine autism link.

Better that we just "wear blue" because dealing with all that ugliness would just be too ugly.

This is my post on "Autism Awareness" from 2008 entitled, "Insensitive Jerk Makes a Good Point". Nick sees all the signs that tell him that Autism is everywhere, but tells him nothing about what to do about it. And this was three years ago. I should try to track Nick down and see if he has figured out what he can do about it yet.

HAPPY PHONY, BS, ARCHAIC, DESCRIPTION OF BEHAVIORS DIAGNOSIS THAT TELLS US NOTHING ABOUT WHAT IS GOING ON MEDICALLY SO WE CAN KEEP IGNORING THE TOXIC CAUSES OF WHATEVER THE HELL IT REALLY IS WHILE IT CONTINUES TO KILL PEOPLE CELEBRATION DAY!

Make sure you wear blue, write a check to AS, vaccinate your baby, give him a dose of Tylenol, feed him GMO's and then go back to sleep. They experts are handling it for you.


Insensitive Jerk Makes a Good Point
By Ginger Taylor, Adventures In Autism
APRIL 13, 2008

Last week Nick Jameson, college smart ass, wrote a piece on his reaction to the autism awareness campaign currently under way. One currently struggling with autism might be put off by his callousness until one remembers that he is only 22 and that we were all pretty much insensitive smart asses at 22.

I would encourage all to allow Nick a chance to grow and check back with him in 10 years or so when he is expecting his first child and see if maturity has tempered his stance.

But what is useful from Nick, random college punk, is this reaction:

For example, what is the purpose of putting up a billboard that is telling me a child is born with autism every 20 minutes? What can I possibly do other than sit in my car and mutter to myself, “Well that sucks.” Maybe if there was a cure or even ways to help prevent autism, it might make more sense to have a billboard. Then it would reinforce concepts in people’s head that they could apply later like “only you could prevent forest fires” or “don’t eat cheese before noon.” But frankly, all this billboard is really saying is, “Beware, autistic people are everywhere,” and I’m sure that isn’t the message they want to get across. We already know autism exists; give us something we can work with. If the autism front wants to put us through a year of sappy ads and TV specials, than at least make it worth the time and money and headache. Teach us something. I was on my way to New York City this weekend and every toll booth was littered with autism propaganda. Did I learn anything? No. There are more intelligent ways to get out a message to the public.

Does Nick know that there are successful treatments available? Does Nick know that there are some kids who are completely recover from autism? Does Nick know that there are things that he can do to prevent his own children (should he ever become soft hearted enough for a woman to agree to marry and/or procreate with him) from slipping in to autism?

Apparently not. And that is the fault of the media who won't report the whole story.

So our young Nick has made a great point. One that parents like me have been trying to make for years now. "Autism Exists" is a message that everyone got a few years back now. But the important message, "Autism is Treatable and Preventable" is one that the media will not share with him.

What is it going to take for them to tell the whole story?

In ten years, when Nick is expecting, will he have heard this message from the media? Or, like us, will he hear it from another parent on the playground after Nick Jr. is diagnosed with autism?

Addendum: Autism Speaks had a huge chance this month to get the treatment message out and yet again, they are screwing children by with holding the important message. They certainly have the cash to do it.

/End 2008 article

*Ok... I actually have no idea if Geri Dawson has horses, but I do know she lives on a ranch or a farm or something, so horses... not out of the question really.

I Love Autism Moms

I love how they just don't give a crap about the usual vanities and modesties when it comes to their kids.

Insensitive Jerk Makes a Good Point

Last week Nick Jameson, college smart ass, wrote a piece on his reaction to the autism awareness campaign currently under way. One currently struggling with autism might be put off by his callousness until one remembers that he is only 22 and that we were all pretty much insensitive smart asses at 22.

I would encourage all to allow Nick a chance to grow and check back with him in 10 years or so when he is expecting his first child and see if maturity has tempered his stance.

But what is useful from Nick, random college punk, is this reaction:

For example, what is the purpose of putting up a billboard that is telling me a child is born with autism every 20 minutes? What can I possibly do other than sit in my car and mutter to myself, “Well that sucks.” Maybe if there was a cure or even ways to help prevent autism, it might make more sense to have a billboard. Then it would reinforce concepts in people’s head that they could apply later like “only you could prevent forest fires” or “don’t eat cheese before noon.” But frankly, all this billboard is really saying is, “Beware, autistic people are everywhere,” and I’m sure that isn’t the message they want to get across. We already know autism exists; give us something we can work with. If the autism front wants to put us through a year of sappy ads and TV specials, than at least make it worth the time and money and headache. Teach us something. I was on my way to New York City this weekend and every toll booth was littered with autism propaganda. Did I learn anything? No. There are more intelligent ways to get out a message to the public.

Does Nick know that there are successful treatments available? Does Nick know that there are some kids who are completely recover from autism? Does Nick know that there are things that he can do to prevent his own children (should he ever become soft hearted enough for a woman to agree to marry and/or procreate with him) from slipping in to autism?

Apparently not. And that is the fault of the media who won't report the whole story.

So our young Nick has made a great point. One that parents like me have been trying to make for years now. "Autism Exists" is a message that everyone got a few years back now. But the important message, "Autism is Treatable and Preventable" is one that the media will not share with him.

What is it going to take for them to tell the whole story?

In ten years, when Nick is expecting, will he have heard this message from the media? Or, like us, will he hear it from another parent on the playground after Nick Jr. is diagnosed with autism?

Addendum: Autism Speaks had a huge chance this month to get the treatment message out and yet again, they are screwing children by with holding the important message. They certainly have the cash to do it.

Local Bloomington, IL Doctors Don't Show Much Interest in Autism

Reading articles like this is discouraging. After all that has happened this month to see an autism presentation at a University canceled due to lack of interest from doctors is quite telling.

It brought to mind the comments of one of the mothers in Autism: The Musical. 'I don't know how to make them value her'.

Why do so few doctors value our children?

Local doctors don't show much interest in autism

My family was happy to see that The Pantagraph had a blurb about the upcoming discussion regarding early identification of autism and autism awareness sponsored by the Autism Spectrum Institute, Autism Clinic at Illinois State University, the Autism Society of McLean Cunty, SPICE, Marcfirst and Child and Families Connection 16 at Ewing Manor on April 3.

I was looking forward in hearing what Dr. Charles Morton had to discuss and to pass on to the local physicians - the target audience.

When I phoned the Autism Clinic at ISU on Tuesday to inquire if this was open to the public, the clinic informed me that, due to low physician response/interest, they were canceling the presentation.

Much to my chagrin, this solidifies my theory that the local medical community doesn't appear to be interested in this very important health issues facing us as a society today.

I know that that might be an over-generalization, but I have seen it.

There were only a total of 10 physicians responding to attend; I think that is telling.

The local universities, service centers and private practice therapists have much to offer. My family believes that early identification and intervention are key in helping a child become all that they are able to be and more.

One in 150 children will be affected by autism and those numbers will be increasing. So if you don't know anyone affected by autism, you soon will.

Julie Gifford

Dr. Stoller on His Autism Journey and the CDC

Stoller was a pediatrician that saw only two cases of autism in his first decade and a half of practice, and came to the realization with the problems with the CDC and vaccines around the same time as I did in 2004 when he was testifying before the Senate on another medical matter. He highlights the ridiculous position of the CDC:

If we were talking about children going blind read how obscene this would sound:

“The number of children diagnosed with blindness is rapidly increasing. According to a study from the Centers for Disease Control and Prevention, nearly one in every 150 U.S. children is blind. These numbers are startling and this disability is affecting more and more families. Twenty years ago blindness was a very rare case. Today blindness is becoming a frightening statistic in every community. April is Blindness Awareness Month and I encourage everyone to take this opportunity to learn more about this disability…”

It would be absurd to relate this information about blindness without giving any explanation about what was causing it. Everyone would be demanding answers, and I dare say there would be protests in the streets to say the least...

...No other disease in history has been subjected to the spin that has been put on autism....

...It seems the scientific world isn't concerned that more children will be diagnosed with autism this year than with AIDS, diabetes and pediatric cancer combined.

It is a long article. Read the whole thing.

Throwing children into oncoming traffic: The truth about Autism
By: Kenneth Stoller, MD, FAAP with Anne McElroy Dachel
Tuesday, April 24th, 2007

I have been a practicing pediatrician for over 20 years. I saw my first child with autism in the early 90’s – before that I had never seen an autistic child, and I never saw an autistic child in all my years at school. The boy was 4 years old and you could see the frustration in his face as he wanted to speak but nothing intelligible would come from his mouth except shrieks of anguish.

As I studied his tortured face, it was as if there was an old time telephone switchboard operator inside his head trying to plug in the correct phone cables but not being able to complete the call. This family had known me from an old practice I worked at in another city, but they had traveled to see me because they trusted me and were looking for answers that no one seemed to have for them, but I too had no answers and I could see the mom was greatly disappointed. After the family left my office I poured over a few dusty textbooks and wondered if I had just seen a very rare disorder, a disorder that affected one child in 10,000 children…autism.

I had been involved in pediatrics for a decade by the time I saw this boy and it wasn’t as if I had no experience working with rare disorders. I had been able to identify a boy with Fragile-X syndrome and his mom ending up starting the Fragile-X support group at Children’s Hospital in Los Angeles.

I had noticed there was a strange upswing in children with attention disorders and impulsivity problems. I wasn’t a neurologist, but had studied with one of the finest at UCLA. While I was still a pediatric resident I spent time in his office where he helped me study the parade of unusual maladies that was starting to afflict children. I considered myself a closet neurologist, because that was what I had really wanted to specialize in – not pediatrics, but during my neurology rotation in medical school I learned some discouraging news. The attending neurologist, whom I greatly admired, had taken me on rounds for the first time and I watched him brilliantly explain to the family of a stroke patient how he had figured out where in the brain the blood clot had lodged. Then he stood up and walked out of the room and I asked him what therapy he was going to prescribe for the patient so he could recover from his stroke, “therapy?” he said, “there is no therapy.”

Well, I scratched neurology off my list…diagnosis was only meaningful if you could offer a treatment and it seemed neurology had few treatments to offer.

My second patient with autism came to me in the mid 1990’s, but to my relief the purpose of the visit was only to treat worms. I dutifully prescribed the medicine for pinworms and went on to my next patient. Later that afternoon I received a call from the autistic boy’s mom who wanted to know what was that medicine I had given her son for pinworms….her boy was starting to make eye contact, show affection and communicate with his family. She said it was amazing! I told her I didn’t really didn’t know what was in the pinworm pill but immediately prescribed enough pills for her son to take everyday for a month (normally you only take one or two pills to treat pinworms).

I called up the pharmaceutical company that manufactured the pinworm pill and spoke to one of their technical staff. They told me the pill worked by blocking the transport of molecules of a certain size from crossing cell membranes, so in the case of the hapless pinworms they were unable to absorb the sugars they feed upon in the lower intestines of their victims.

What did that have to do with this boy’s newly found improved behavior? Either one of two things were going on: 1) the drug was either blocking a molecule that shouldn’t be passing across the gut to the blood and then the brain and that molecule was having a drug-like affect on the brain, or; 2) the drug was blocking a molecule that normally crossed from the gut into the blood but in certain children these molecules had a strange drug-like affect.

I made several calls across the country to find a researcher who might be interested in this serendipitous finding which could be an important clue into this disease, because no where had I found anything saying that the guts of these children were involved in their disease. Unfortunately, no one I talked to was interested.

Testifying to Congress...

In May 2004, I had been invited to testify in front of the Government Reform Committee to discuss new developments in treating children with Autism Spectrum Disorders. I had been invited because of the work I was doing with hyperbaric oxygen in treating brain injured children, including fetal alcohol syndrome. Hyperbaric oxygen is where oxygen is given under pressure in chambers that are used to treat scuba divers who get the bends. I and several other physicians had found that hyperbaric oxygen was returning functionality to the brains of affected children.

Sitting next to me was a physician who told the story of his son who had become autistic after receiving vaccine and how he discovered his son was retaining toxic heavy metals, specifically mercury. Over the course of a year this physician had given his son a chemical to pull out the mercury and his son began speaking again and in fact jumped on his dad’s lap and addressed the Committee members having been restored to be a healthy boy without any signs of his autism.

In the 1990’s I had known there was a problem with many of the vaccines because they contained the preservative Thimerosal (50% mercury) and I had discouraged many parents from getting vaccine containing Thimerosal – there is no safe level of mercury, and it didn’t make sense to inject the most toxic non-radioactive element on the planet into children, but I never made the connection between autism and mercury. I knew what Thimerosal was because while I was in college my brother had a very bad reaction to the Thimerosal that used to be used in contact lens solution.

I was taken aback that something so obvious had not registered with me, but I didn’t realize that I and my physician colleagues had been subjected to a disinformation campaign to make us think there was no connection between mercury and autism. It has been known for sometime that mercury was causing autism, but someone was running interference. The question was who was running interference?

In February 2007, the watchdog agency on America's health, the Centers for Disease Control and Prevention (CDC), made the official announcement that a breath-taking one in 150 kids is autistic in the U.S. If you go to the CDC website on autism (http://www.cdc.gov/ncbddd/autism) you’d see lots of pictures of smiling happy children with autism and we’d be told that autism spectrum disorders are “a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests.”

You won’t be told that for many parents autism is a nightmare from which they never wake up. “Significant impairments” can mean that a child is violent and self-abusive, non-verbal, and physically sick. You won’t be told that this is a medical disease where most autistic children have significant inflammation in both gut and brain including colitis, super-infections and severe food allergies.

Even though autism affects one in 90 boys (four boys affected for every girl) in the U.S., the CDC can’t seem to tell us exactly why. The CDC states, “We still don’t know a lot about the causes of Autism Spectrum Disorders (ASDs). Scientists think that both genes and the environment play a role, and there might be many causes that lead to ASDs.”

The site also doesn’t mention that only one in 10,000 children in the 1970s, and one in 2,500 in the 1980s were autistic.

The CDC site also doesn’t tell us about a secret meeting that was held in June of 2000 where over 50 individuals from the CDC, WHO, NIH, American Academy of Pediatrics, and many representatives from pharmaceutical interests discussed data from the CDC Vaccine Data Sets showing that the increase in mercury exposure from the stepped-up vaccine schedule in the 1990’s caused an 11 fold increase in neurobehavioral disorders (www.autismhelpforyou.com/Simpsonwood_And_Puerto%20%20Rico.htm). What you will see on the CDC website is “Several studies have looked at whether there is a relationship between vaccines and autism. The weight of the evidence indicates that vaccines are not associated with autism.”

Evidence? Someone at the CDC was ‘cooking the books’ and what they told the public was not what they knew to be the case. You see, the CDC was put in the untenable position of helping to develop vaccines, mandate the vaccines, promote the vaccines, pay for their administration and be responsible for their safety – Ye olde fox watching the hen house scenario with the inevitable untoward result. There will always be a problem with vaccine safety until this responsibility is moved out of the CDC. Today, the CDC and its vaccine public-relation front group’s answer to any criticism is that the motivations of those that are critical of any part of the vaccine program are because they really want to destroy the vaccine program.

The truth is that the CDC has been very effective in laying the foundation to destroy the vaccine program all by themselves and their double speak is analogous to someone saying you can’t be against war and support the troops at the same time, you’re either for us or against us, etc. It is actually illegal for a federal agency to propagandize the American public, but that is exactly what the vaccine division of the CDC does. It has used the tactic of generating fear and it has earned billions of dollars for this agency.

Once the public loses trust in public health programs it can take many years to regain that trust. I am reminded of the Tuskegee syphilis experiments that are still a cause of distrust of public health programs amongst Black Americans.

Losing the Public Trust...

The cover-up at the CDC surrounding the mercury preservative found in so many vaccines (up until about 2003) has had very serious far-reaching implications. The children whose lives were forever changed by being injected with Thimerosal preservative were giving us a global ‘heads-up.’ They were showing us that the background level of mercury pollution has increased to the point that it is beginning to take its toll on the human species, but the CDC turned its head away from this crisis because it conflicted with what they were promoting in the vaccine program.

As I said before, mercury is the deadliest non-radioactive element on Earth, and 1000s of tons are spewed into the environment every year. With each coal-fire power plant that comes on line we are one step closer to exterminating human life on this planet. However, mercury is politically protected because of its connection with the fossil-fuel industry, dentistry (amalgam dental filings), and vaccine.

Thimerosal is still in the flu vaccine for children above the age of 3 and they are receiving as much as half of the dose of mercury that the child in the ‘90’s received. Thimerosal was not removed from vaccine in 1999. That was when the promise was made, but promises weren’t kept. Thimerosal is also in the meningitis vaccine.

Lower IQ levels linked to mercury exposure in the womb cost the USA $8.7 billion a year in lost-earnings potential according to a study done by the Mount Sinai Center for Children's Health and the Environment (http://fusion.mssm.edu/media/content.cfm?storynum=252). If it were publicly acknowledged that mercury pollution was the trigger for the autism epidemic this number would be in the trillions of dollars. One in six children is born to mothers with dangerous levels of mercury in their blood – perhaps the same one in six that the CDC admits have a neurobehavioral disorder.

Our regulatory agencies, such as the FDA and the EPA, have been taken over by the very industries they were mandated to regulate and the revolving door between industry and top-level appointees at these regulatory agencies has eliminated many of the normal safeguards we have relied on for our protection.

There is no disputing the numbers. Last month the Tonawanda News in New York reported “cases of autism in the state jumped from fewer than 2,000 in 1992 to 9,500 in 2003.” Even worse was the number of affected children in New York schools in 2005-2006 according to the Dept. of Education. New York’s autism total had increased to 12,257.

Maybe what we really need to be made aware of is what the eventual cost of autism will be to the U.S. The Autism Society of America tells us that autism is growing by 10-17% a year. They also say that it currently costs $90 billion a year and it's projected to increase to $200-400 billion annually in ten more years. A Harvard study out last year put the cost of lifetime support conservatively at $3.2 million per individual.

April was Autism Awareness month, but why are we only asking for awareness and not for answers? This is a glaring omission when we’re talking about so many affected children. Awareness, treatment, and identification are critical but so is preventing autism.

If we were talking about children going blind read how obscene this would sound:

“The number of children diagnosed with blindness is rapidly increasing. According to a study from the Centers for Disease Control and Prevention, nearly one in every 150 U.S. children is blind. These numbers are startling and this disability is affecting more and more families. Twenty years ago blindness was a very rare case. Today blindness is becoming a frightening statistic in every community. April is Blindness Awareness Month and I encourage everyone to take this opportunity to learn more about this disability…”

It would be absurd to relate this information about blindness without giving any explanation about what was causing it. Everyone would be demanding answers, and I dare say there would be protests in the streets to say the least.

The CDC and Autism...

CDC director Julie Gerberding announced the new autism rate of one in every 150 children with a flourish. She said that while there were more kids being diagnosed with autism, it doesn't mean the autism was necessarily on the rise. No one in the press seemed concerned that the CDC has been counting kids with autism for years and still can't tell us if there are actually more of them. After all, it’s just "better diagnosing by doctors" and "better statistics by the Centers for Disease Control." And now we learn that the Autism Genome Project (AGP) recently uncovered evidence shows that autism is caused by "genetic flaws.”

Common sense would tell us that pushing children onto a busy street, observing that some of them were injured, and then looking for a genetic reason why some of them were hit defies credulity.

No other disease in history has been subjected to the spin that has been put on autism.

Dr. Ezra Susser, chairman of epidemiology at Columbia University's Mailman School of Public Health in New York indicated that he believed the new genetic findings would help scientists to understand how "the environment might lead to autism by causing genetic changes."

Susser said, "It shows us that we need to think about many environmental factors that might influence autism."

The new genetic findings on autism got a lot of coverage from major news outlets and reports made it look like we're on the cutting edge of a major autism breakthrough. But let’s do a reality check here, genes don't just spontaneously and randomly mutate all by themselves. There has to be an environmental agent affecting these genes.

Some will have you believe that autism is some medical mystery that's always been around but we just haven't been able to get a handle on. So, show me the 30 year olds with autism, the 40 year olds with autism, and the 50 year olds with autism. Guess what? They aren’t there for the most part. The explosion in the number of children with autism is real but most of the scientific community has ignored this. Let’s face it they have been encouraged to ignore it, and anyone getting close to the truth finds that they get their NIH research grants pulled.

That’s right…science is being manipulated so that a big lie can stay alive and those culpable can remain unaccountable.

It seems the scientific world isn't concerned that more children will be diagnosed with autism this year than with AIDS, diabetes and pediatric cancer combined. News stories about autistic kids are now beginning to reveal the duplicity of CDC officials. These reports clearly show that this isn't something we have all the time in the world to theorize and ponder about.

All the experts searching diligently for those elusive genetic mutations seem blissfully unaware of the impact of autism on our schools and the impending disaster, as these autistic children become autistic adults. Anyone looking at the graphs and charts based on Department of Education statistics showing the soaring autism numbers has got to be worried. The dramatic increase in children in our schools disabled with autism is a scary preview of the impact they will have on the Social Security System in the next five to ten years.

Michael Ganz's Harvard study last year conservatively put the lifetime care cost for one autistic individual at $3.2 million dollars.

Robert Krakow from Lifespire gives us estimates that put the lifespan cost at $10.125 million per autistic individual. This figure is based on an annual rate for each person of $225,000 with a life expectancy of 66 years. It doesn't include the cost for the period up to age 21.

One of the many questions we need to ask ourselves is if the very integrity of the biosphere on this planet is in jeopardy unless there is an immediate curtailment of manmade mercury pollution. Coal miners don’t look at a dead canary and blow it off or say they have just “gotten better at diagnosing dead canaries,” or “that dead canary just had a genetic defect so pay no heed.” Yet that is exactly analogous to the situation we find ourselves. We continue to pollute the planet and ourselves (there is no separation), yet the very governmental agency that would normally be taking the lead in sounding this 5 alarm alert has been compromised and remains less than silent. Mercury pollution should be considered a global crime against humanity, against mammalian life on this planet and there should be zero tolerance.

If you want to know why more isn’t being done for autistic children, why there has been a strange cover-up of the facts, then simply follow the mercury and those that benefit from its use.

Kenneth Stoller, MD, FAAP is medical director of the Hyperbaric Medical Center of New Mexico (www.hbotnm.com) and the Hyperbaric Oxygen Clinic of Sacramento (www.hbot.info). He is President of the International Hyperbaric Medical Association. He can be reached at: info@hbotnm.com

Anne McElroy Dachel of Chippewa Falls, WI is a member of A-CHAMP (Advocates for Children's Health Affected by Mercury Poisoning) and the National Autism Association (NAA). She can be reached at: amdachel@msn.com.

Caiseal Mor Coming Out of the Closet

Mor talks about the shame he was taught to feel over his autism, and how his PR machine kept the world from knowing who he really was. It is hard for me to wrap my brain around the idea that this stuff really still happens.

I can't even bring myself to address the way his family treated him.

I am glad that things are changing enough that he feels he can talk freely now.

Bestselling novelist, Caiseal Mor, comes out as autistic - an interview with Donna Williams
Donna Williams
April 23, 2007

Bestselling fantasy fiction author, Caiseal Mor, was diagnosed with ASD as a child. He’d written his autobiography in adulthood but the publishers and the journalists who helped his fiction works climb to fame were convinced that public awareness of his autism would be unhelpful to book sales. He was not only strongly discouraged from going public about having ASD but a whole other persona was created for him instead.

After seeing me talking about autism on the Insight Program on SBS on Australian TV, Caiseal contacted me by email. Surely, if I too was a bestselling author and public about my autism and clearly hadn’t been institutionalized in a loony-bin for the world knowing that, he considered again whether having autism was truly a dirty little secret that needed to be kept locked away.

After hearing his story I encouraged him to bring his autiebiography, titled A Blessing and A Curse, out of the closet and send it to Jessica Kingsley Publishers. It’s now basking in the light of day, having been published and released this April. Its a wonderful book, a shocking book, and a great read. I asked Caiseal for an interview. Here it is.

DONNA WILLIAMS’ INTERVIEW WITH CAISEAL MOR.

1) Caiseal, you’re a bestselling fantasy fiction writer of many books with a wide fan following.

Did your autism inform those works?

It’s very difficult for me to be objective about my autism but I know that some of the characters in my novels share my distinctly autistic traits. Some are hypersensitive, others have trouble interpreting their world and the nature of reality. I believe that all my fictional characters are aspects of myself.

2) Your fantasy fiction works were published by mainstream publishers who managed your image as part of their PR.

How removed from the real Caiseal Mor was that image?

From the outset my image was completely managed by others; especially publicists. That’s not unusual for any fiction author. However, as my books became more and more popular, my ticks and eccentricities were seen as a liability. The people around me turned out to be quite prejudiced. Rumours went around that I was psychotic because I refused to act the part of a successful writer and conform. Those people who had influence over my career made a concerted effort to hide the real me. I suppose they let their prejudices get the better of them. They built a mythology around Caiseal Mór that has, unfortunately, persisted.

The next ingredient in the myth was the media. Either because of sloppy research or because they were repeating silly rumours they’d heard, a few journalists created a background and a persona for me that simply was not true. For example; one particular reviewer claimed to have met me at a book launch. She described me as a short, fat, bald Irishman in my late sixties. She claimed I reminded her of a dwarf version of J.R.R. Tolkien. Now, anyone who knows me would laugh out loud at that but since this bogus description was printed in a major Australian newspaper my readers believed it. It’s been quoted again and again by the international media and simply won’t go away. I’d turn up to book-signings and have to show my driver’s licence to prove I was the real deal. Journalists have a lot to answer for.

3) You were diagnosed as autistic and identify with Dissociative Identity Disorder and PTSD.

What kept you in the closet all these years about these conditions?

As I mention in my autobiography, I’ve been taught to be ashamed of my autism. Shame has pretty much controlled my life. I was also led to believe that autistic people were compelled by law to be institutionalised. I thought I was going to end up in a mental hospital and there was nothing I could do about it. It was threat Mother employed to calm me down. Nothing scares me like the prospect of having my liberty taken away from me. I live for my creativity and I believed that creativity is forbidden in mental hospitals. After I ran away from home I learned to present as normal so I’d slip under the radar. I thought there weren’t many people like me. Crippled by shame I went into hiding. I became an extreme recluse.

I really only began speaking openly about my autism and co-morbid disorders in the last few years when I realised I had nothing to be ashamed of in the first place. I understand that I’ve suffered terrible prejudice in my life. But I believe prejudice is based entirely on ignorance. And ignorance can be cured.

4) Autism is distinguished from Asperger’s mostly on the basis of early language history.

Whilst 2/3rds of people with autism do have speech, most of those people have dysfunctional language and many who are non-verbal are now beginning to use typed communication.

What was your own early speech like?

Did you have conversation or just speech?

I didn’t speak until I was four. I screamed and cried but I didn’t use or understand words. I describe in my book how I listened to animals and accurately copied their sounds and calls. Even after I began to use words I rarely strung them together in conversation. Most of what came out of my mouth was learned by rote off the television. I was eight or nine before I began to grasp the rules of conversation. I’m in my 40’s now and I still struggle sometimes to hold a conversation. I much prefer the written word. Interaction can be very frustrating for me. My brain is wired differently from most people.

5) Your book, A Blessing and a Curse, has been compared with international bestsellers like Nobody Nowhere, Sybil and Forest Gump.

In what ways do you think your life compared with the central figures in those books.

From the start the odds were stacked heavily against me. I wasn’t able to get the best out of the education system because it couldn’t deal with someone like me. There were no special schools in Australia in the 1970’s. I was labelled as an idiot who’d end up digging ditches for a living. As a teenager I’d come to terms with the fact that I’d always be alone in life. That was very hard but it enabled me to survive without peer pressure to conform and that released a terrible burden from me. At nineteen I got it into my head to do as much with my life as possible before I was put away in a mental hospital. This led me to go off overseas on an adventure. My incredible good fortune led me to meet some amazing and inspirational people. I was fortunate enough to have some truly wonderful experiences. My adventure soon transformed into a kind of pilgrimage. I was away from Australia for five years. When I returned I was inspired to go to university and by pure chance I was accepted into one of the premiere theatre courses in this country. The next thing I knew I was writing bestselling novels. I’ve had a quite miraculous life really when you think about it. I suppose that’s because I’ve always stayed fairly positive.

6) There’s no avoiding that your book is shocking but it’s also poignant and beautiful at times.

Tell us about the Green-tree-man and your aunt’s later take on this important encounter.

I tell the whole story in my autobiography so I’ll tell it very briefly here. When I was a boy I used to climb up into an old mango tree to hide from Mother. One day, while I was sitting on a branch I saw a green tree snake shedding its skin. I called him Green Tree Man. I had a very close encounter with that snake but I took it the experience in my stride. Mother on the other hand totally freaked out. She pressured Father into killing the snake. I felt extremely guilty about the snake’s death and still do. Perhaps if I hadn’t drawn attention to him he might have lived. I kept his discarded skin for a long while.

It so happened that I was telling my aunt about this encounter some time later. My aunt was a born-again Christian. She’d always seemed quite a reasonable person. I’ll never forget the look on her face when I told her about the snake. Serpents were representatives of Satan in her mind. She was convinced that my autistic eccentricities were caused by the Devil or, at the very least, one of his minions. To her way of thinking my close interaction with a snake linked me with evil and explained why God had decided to punish me by making me abnormal.

I’m autistic. I’m not stupid. I never really took her seriously after that.

7) Your parents really come across as the height of ignorance in their times. Their brutality, including your mother raping you in an attempt to manage your behaviour, is almost unfathomable to most people but do you think this sort of child abuse is still prevalent behind closed doors today?

When I read this question it deeply affected me. I had to spend a while processing what it meant. Before I wrote my autobiography I’d never told anyone about Mother’s mistreatment. I thought I’d had a normal childhood and those sort of things happened to everyone. I’d never considered that what she’d done to me was rape. Now that the word has been used I can see that it certainly was rape.

Violation of my body was used as a way to control me, when other forms of physical punishment failed to elicit any response. But the way my parents treated me must be viewed in the context of the times. Autistic behaviours were viewed by my parents as a form of extreme non-conformity that could be cured, or at least managed. I was considered wilful and uncontrollable. Psychologists and doctors led my parents to believe that punishment could transform me into a normal little boy. All that happened was I learned to present as normal while developing PTSD and other co-morbid disorders. I’m still autistic; so the punishment certainly didn’t cure me. It just forced me to learn to hide my true self.

I’m certain this sort of thing still goes on behind closed doors. I know of one boy who is subjected to punishment by a mother who believes she is preparing him for the real world. Conformity is one of the devastating obsessions of western society. It makes me shudder to think that autistic children are still mistreated by their carers.

8) Today autistic children and teenagers are still among the most likely to go into residential care homes and some are murdered with their families often blaming lack of services. Many of these families truly believe they have done all they could and love their children. Do you think the severity of a child’s autism puts them more at risk of institutionalisation, even harm at the hands of their carers, or do you think that the picture is far more complex than that?

Love is a very strange word. My aunt thought she was expressing her love for me by trying to have me exorcised. To my mind love is defined by acceptance. I think acceptance has been confused with tolerance in our society. Tolerance implies there is some imaginary line that must not be crossed- once it is all rules of decency seem to be abandoned. Acceptance runs a lot deeper than that. Without acceptance in the mix love just isn’t love. In my opinion if love is built on tolerance it inevitably leads to enforced conformity.

I believe I was exposed to a level of abuse that would have been unthinkable if I’d been born without autistics traits. I found it difficult to communicate with anyone when I was young. Mother came close to literally killing me on several occasions. She reconciled her violence by telling herself I didn’t have the same feelings as normal children. She never thought to ask me how I felt.

I can’t comment about other autistic people because everyone’s experience is unique but I suppose it follows that someone with severe autism will be more at risk because they have trouble communicating their concerns. To me it is most disturbing that parents who murder their autistic children so often claim to have been acting out of love. They are frequently exonerated or merely given a slap on the wrist by the justice system. Often it appears that autistics aren’t considered as human as other people.

9) You live independently, are an accomplished author, musician, artist and have a background in film. You have technological abilities, you can speak articulately, have friends and a partner. If autism is a life long disability, what’s left of your autism in terms of struggles with daily and social functioning?

My autism is always with me. I’ve learned to present as normal but that doesn’t mean I fit into any boxes. I’m constantly discovering new things about the world that other people take for granted; especially when it comes to relationships and social signals. These days I’m more relaxed about my autism.

When I’m by myself I often slip into a trance-like state where I conduct planning for my creative endeavours. To someone who doesn’t know me this trance might seem like a catatonic fit but I’m actually very much awake; just shut down.

I tick when I’m anxious, stressed or exhausted; and sometimes for no reason at all. I hate being touched or distracted from my focus. As I’ve matured my autism has changed and evolved to the point where I can achieve results that would have been unthinkable for me as a child or a teenager. Also I don’t tend to struggle to understand or please others as much as I once did. I let them struggle more with me. I’m much more myself. If someone doesn’t like the autistic me they don’t usually gain admittance to my inner circle. If someone wants to get to know me they have to pass some stringent tests. My wife, Helen, is a very accepting person so she passed the test easily.

10) Given the often poor prognosis of people with autism and that you’ve come so far, how far behind was your development at age 3, age 5, age 10 and what do you attribute your progress to today?

I was so far behind in my development as a child that I was considered incurably brain-damaged for a long while. It wasn’t until I was seven or eight that I apparently showed any intelligence. That forced the doctors to reassess my condition and that’s when they came up with autism. I developed slowly even as a teenager. I was behind all my peers both socially and academically. It wasn’t really until my late twenties that I really began to achieve good academic results and then only because I was extremely focused.

I attribute my success in life to the fact that I’ve always been able to achieve anything I set my sights on. It’s the savant aspect of my autism that has probably eased my way through life. If I’m interested in a subject I will absorb everything there is to know about it in record time. I can watch a master craftsman making a drum or a musical instrument and I can do as good a job in no time. I learned to fluently speak both German and Spanish in a matter of weeks.

I was in my early thirties before I began to realise my potential. If I’d been encouraged instead of isolated as a boy, just imagine what I could have achieved in this life.

11) Brutality played a big role in motivating you to control a lot of involuntary challenges in order to survive. But this has come at a price - rage, DID, PTSD. Do you think the price is worth it? Can you think of any other type of affordable approach which would have brought you this far?

I wouldn’t change anything about my life. I know this is hard for some people to understand but I’ve long ago forgiven my parents, despite their abuse. I have a wonderful life and I’m very grateful for my journey. I’ve come to terms with the fact that my parents were doing the best they could with limited resources. If they’d been able to accept me for my quirks perhaps things would have been easier for me. I really believe that acceptance is the key.

12) When is your autobiography due out and how can people find out more information about the book and what you’re doing now?

My autobiography; “A Blessing and A Curse; Autism and Me” is published in May 2007 and can be pre-ordered on the amazon.com web-site. I have a web-site of my own- www.mahjee.com where I keep my readers informed about my latest projects and I post a blog.

Caiseal, welcome out of the closet and thanks so much for being involved with this interview.

… Donna Williams

www.donnawilliams.net

On Tonight on BBCA: After Thomas

I have read good things:

After Thomas

Teddy Sure Has Made The Most of His Turn!

Chapter 3 in the Story of Teddy.

Teddy addressed his school board on Thursday night asking them to increase autism awareness. And made a new friend.

Teddy has more courage than most adults I know. It is great to see an autistic child who knows who he is and wants the world to know too. I hope that Chandler will be able to advocate for himself like this when he is in 5th grade.

CR Student Takes Mike, Tells Story

By KENDRA GENTRY
Bucks County Courier Times

Teddy Willis got his chance to speak publicly on Thursday night.

The Goodnoe Elementary fifth-grader, who has autism, recently spoke about his disability at his school after initially being denied. Thursday night, he addressed the Council Rock school board during its public comment section.

“I would like more people to understand my disability about having trouble with social skills,” he said into the microphone. “If they did that, then I wouldn't be the least popular kid at Goodnoe and I would just be like everybody else.”

What came next was a surprise to both Teddy and his parents, Irene and Ted Willis of Newtown Township.

After leaving the board room, Teddy was introduced to Andrew Flinn, a 13-year-old seventh-grader with Asperger's syndrome, a mild form of autism.

Andrew and his mother, Noreen, drove an hour from Coopersburg to listen to what Teddy had to say.

“My son, like Teddy, is picked on in school,” Noreen said. “We wanted to approach [my son's] school about it but were also turned away.”

Andrew said the bullying he received was really bad a few years ago.

“Fourth grade was the worst grade for bullying. The kids started getting their kicks by picking on me,” he said.

Irene Willis, Teddy's mother, said her son's presentation before the school board not only raised awareness with board members, but to the district as a whole.


“Hopefully there will be more sensitivity training and people will embrace what Teddy feels like to have autism spectrum disorder,” she said.

Carol Bemmels, Teddy's grandmother and a guidance counselor at Conwell-Egan Catholic High School in Bristol Township, said she was proud of Teddy and Irene for their comments to the board.

“Allowing kids with disabilities to speak for themselves is positive,” said Bemmels, who was the person who informed the Flinn family about Teddy's presentation.

Irene said she was happy to meet Andrew and his mother. She said she hopes for similar connections with students at Teddy's school.

“Maybe 10 kids will look beyond his disability and see that he is a child who wants to play and will want to be his friend,” she said.

As for Teddy and Andrew, the two already swapped e-mail addresses.

“I'm just glad he made another friend,” Noreen said. “It was well worth the ride.”

Kendra Gentry can be reached at 215-949-4206 or kgentry@phillyBurbs.com.

Autism on Nickelodeon

Nick is doing a show on Autism on Sunday. "Private Worlds: Kids & Autism " looks like it will be great for helping our kids be understood by other kids.

Teddy's Turn to Talk

UPDATE! Check the bottom ... Teddy wins!!!

Teddy is a 5th grader with Asperger's, who has a hard time in school:

[His mother's] voice cracks with emotion when she talks about a day last November when Teddy came home after school bursting with excitement. It was the best day of his life, he told her.

What happened?

“No one picked on me today.”

Teddy wanted to speak about his disorder at his school during Autism Awareness month so that kids will understand him.

His principal said no.

His local newspaper said yes.

I am with them.

He's on a mission to raise awareness

By JO CIAVAGLIA
phillyBurbs.com

Teddy Willis just wants to tell classmates something about himself.

Maybe if they understood what autism is, what it's like for kids like him who have it, maybe they won't pick on him anymore. Maybe he'd make new friends. Maybe others would treat him like a regular kid.

“I'd tell them I'm one of the kids with autism and sometimes kids with autism get picked on,” Teddy explained recently in his family's Newtown Township kitchen. “It's not their fault; it's just because they have autism.”

The fifth-grader asked his mom about talking about autism at his school, Goodnoe Elementary. He thought April would be the perfect time since its autism awareness month.

What an awesome idea, Irene Willis told her son. After all, when Teddy spoke about his disability in his social skills class in February, he made a new friend. He also wrote about his autism for a school report.

“He has a lot of cool things they probably don't know,” Willis said.

Principal Eileen Dwell says the school is marking autism awareness month, but she doesn't think it would be appropriate for Teddy to share his story with regular education classmates at morning meeting, a pre-class activity where the kids practice social skills.

She is worried about it indirectly violating the privacy of other students.

“There are other children in classrooms who don't realize they are different than anyone else,” Dwell explained. “I need to look at the privacy of others.”

BALANCING ACT

An education rights lawyer says the situation illustrates the delicate balancing act schools face with helping children learn about disabilities in a positive way, while respecting student privacy rights.

Slightly more than 8 percent of Council Rock School District's 1,981 special education students last year received services for autism disorders, more than any other district in Bucks County, according to state statistics. Goodnoe has a large population of special education students with autism disorders, Dwell said.

At age 6, Teddy was diagnosed with Asperger's syndrome, a mild form of autism spectrum disorder, a neurological condition that impairs a person's ability to connect with the world, form relationships or communicate.

People with Asperger's often are described as highly intelligent, but they experience behavior or social difficulties.

As a toddler, Teddy could write his name, but he didn't talk, preferring to point “yes” or “no,” or spell answers in the air with his finger, his mom remembered. At age 3 1/2, Teddy taught himself the American Sign Language alphabet in one day, Irene said.

Teddy splits time in special and regular education classes, but school can be hard for her son, Irene Willis said. His behaviors often are misunderstood. Sometimes, he gets frustrated, loses his temper or cries.

“He is eager to learn and it is going to get squashed,” she said. “Children don't understand the difficulties between hidden disabilities and other disabilities. If a kid is having a temper tantrum, then that kid is marked on the playground.”

Her voice cracks with emotion when she talks about a day last November when Teddy came home after school bursting with excitement. It was the best day of his life, he told her.

What happened?

“No one picked on me today.”

FINDING BALANCE

During autism awareness month, Goodnoe Elementary is attempting its first specific effort at heightening awareness of “invisible differences” among staff and students, Dwell said.

Students were involved in activities such as reading picture and chapter books about kids with autism and received autism awareness ribbons. Also, teachers had additional, extensive training in teaching students with autism disorders, Dwell said.
click here

For this first year, though, Dwell felt child speakers shouldn't be part of the activities out of concern that students who attend special classes with Teddy might be singled out.

“I don't want to have kids identified by association,” Dwell said.

Student privacy rights are a sensitive area for schools, said Len Rieser, co-director of the Education Law Center in Philadelphia, an education rights advocacy group. He can understand how a family wouldn't want other people to look at their child as different.

“It's an equally important consideration,” he said.

But the Goodnoe Elementary situation presents the district with an unusual teachable moment, he added. One that school officials should find a way to take advantage of.

“What is sort of striking about this situation you're describing is, for me, it's unusual to hear of a situation where a student and his family have said they want to be part of explaining disabilities to other students,” Rieser said. “Not every school, in a way, is lucky enough to have kids willing to do this.”

If schools can find ways to let students learn from each other about disabilities, it may have a greater long-term impact than adults delivering the message, he said.

“All of us struggle with this question how to help kids learn about disabilities in positive ways,” he added. “I say it's a tricky area, but in general, we can learn a lot about autism from people with autism. There has got to be something valuable in that.”

LIKE NORMAL KIDS

During a morning meeting last week, when a teacher talked about autism, Teddy raised his hand to share his story. But he said he was taken aside and told that autism is something “personal” he should keep to himself.

Teddy doesn't understand what's wrong with talking about autism.

The disorder is just a part of who he is. Sort of like how some people have red hair and others are better at math.

Kids with autism sometimes have trouble concentrating, he explained. Sometimes, they forget a question right after it's asked. They can have trouble switching from one activity to another. Controlling his emotional reactions can be hard.

“One thing that is hard for me is kind of explaining things,” Teddy said.

Other than that, Teddy's not so different. He plays kickball and video games like Sonic the Hedgehog (“I have a Wii”), baseball, skiing and karate. He likes summer camp and amusement parks. Chocolate chip and Oreo cookies and ice cream are among his favorite foods.

“If they really knew about autism, I bet people would start treating me differently. They wouldn't be mean,” Teddy said.

Sometimes, kids call him names like Teddy Bear or Theodore, which he hates. He is always picked last for gym teams and he's never been a team captain.

“I just want people to treat me better, like one of the other normal kids. If many people knew about autism, then they might think about what the person's good at and not what the person isn't good at.”

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com.

UPDATE:

Student with autism is silent no more

By JO CIAVAGLIA
phillyBurbs.com

See and hear Teddy's soundslide show

To you, the daily school note may have sounded matter-of-fact, but to Irene Willis it spelled victory.

In her son Teddy's journal, his teacher wrote that in the Tuesday morning meeting, Teddy's teacher read a book to the class about Asperger's syndrome and then let Teddy talk about living with this disorder.

“It's a start. Finally, maybe things will get better for him,” Irene said. “That is what it's all about. He just needs a little help.”

Now, Teddy, 11, is planning on bringing his one-boy, autism-awareness campaign to the Council Rock school board during the public comments portion of Thursday night's meeting, Irene said Tuesday.

Initially, his principal at Goodnoe Elementary refused the fifth-grader's request to talk about his autism disorder with classmates. Principal Eileen Dwell was concerned it might violate the privacy of other students.

In a Courier Times story last Sunday, Teddy talked about his efforts to share what it's like to live with Asperger's syndrome. Following publication, autism support Web sites, listserves and blogs posted links to the story and an accompanying slide show featuring Teddy.

Asperger's is a mild form of autism, a disorder that impairs a person's ability to connect with the world, form relationships or communicate. People with Asperger's often are described as highly intelligent, but they experience behavior or social difficulties.

The Willis family and the newspaper have been flooded with e-mails supporting Teddy and criticizing Dwell's decision to not let him speak to students during a pre-class activity during April, which is autism awareness month.

The Courier Times was unsuccessful in reaching Dwell late Tuesday afternoon for comment.

“Children with autism spectrum disorders face many daily challenges, but one of the biggest is the challenge of prejudice and misinformation,” said Cathy Gallagher, a Middletown resident. “Principal Dwell may feel that she is protecting students' privacy, but she is really making a statement that "special' education students are different.”

Not only do students with disabilities know they're different, but everyone else already knows who they are, wrote Narberth resident Karin Fox, whose 6-year-old daughter is autistic.

“Do the kids with peanut allergies and diabetes have to keep silent?” Fox said. “He should be admired for his attitude — not pushed and shushed back into the closet.”

The support has been overwhelming, Irene Willis said, adding that Teddy and the family hope by sharing his story it will inspire parents to talk with their kids about people who are “different” and promote an atmosphere of tolerance.

During autism awareness month, Goodnoe Elementary is making an effort to heighten awareness of “invisible differences” among staff and students, Dwell has said. But this is the first year the school has undertaken the effort. Dwell felt student speakers shouldn't be part of the activities.

Slightly more than 8 percent of Council Rock School District's 1,981 special education students last year received services for autism disorders, more than any other district in Bucks County, according to state statistics. Goodnoe has a large population of special education students with autism disorders, Dwell said.

Teddy, who was diagnosed with Asperger's at age 6, splits time in special and regular education classes, but school can be hard for her son, Irene Willis said. His behaviors often are misunderstood. Sometimes, he gets frustrated, loses his temper or cries, which makes him a target for frequent teasing, Teddy and Irene said.

Teddy hopes his classmates will understand him a little better.

“I feel very good I shared because now they know,” he said.

Autism: Hope After Diagnosis

From TACA:

What Really Happened When Katie Mentioned Vaccines On Oprah

JB Handley of Generation Resuce is a friend of Katie Wright-Hildebrand and posted an account of her experience on the Oprah Show this week. She said a good deal more about the autism-vaccine connection that was edited out. Here are JB's very frank comments:

REMINDER: There has been a little confusion in the comments section. The following is not my account or opinion... it is JB Handley's.

Katie was told by the producers before the show was filmed that if
she mentioned vaccines she would be off the show.

While taping, the pediatrician made the misstatement about vaccines
and autism (that whole "no connection" reassuring bullshit), and,
during break, Katie appealed directly to Oprah to let her respond,
as you saw on the show.

However, Oprah's response to Katie about "opening the can of worms"
and the audience's applause after what she said was actually based
on a much longer exchange, all of which was edited out of the final
cut of the show.

After the part you heard Katie say, Katie went on to say that the
preservatives in the vaccines made her son sick and that the
combination vaccines and the vaccine schedule were grossly unsafe.

Everyone's favorite pediatrician then jumped in and said that if the
schedule were changed there would epidemics. Katie responded by
saying there already is an epidemic and that our kids are not
disposable so the CDC can perpetuate irrational fears of the measles
and the flu.

I think this highlights a number of things:

- The censorship most media outlets give to this issue is very high.
My personal opinion is that this is due entirely to the power of
pharma advertising and to the fact that the media outlets hear
directly from pharma in advance of these shows and get warned. The
fact that the daughter of NBC's FORMER CEO must be deeply troubling
for pharma because this is going to be one very tough person to shut
up.

- Oprah over-ruled the directive Katie was given because she is
Oprah and appears to have strong moral fiber. If Don Imus is a 10, I
give Oprah a 5, which makes her second-best for national
personalities dealing honestly about our kids, although it is almost
incomprehensible to me that this is Oprah's first show on autism.

- The lame doctor saying "if the schedule were changed there would
be epidemics" has no idea what she is talking about. It is
unbelivable that it is NEVER reported that in the mid-1980s there
were 10 vaccines on the schedule and today its 36. We were not
having massive epidemics in the 1980s and the schedule has more than
tripled due to money and recklessness, with no monitoring system
that could ever catch a delayed-onset condition like autism.

- Katie is a true warrior for her son and all of our kids. She said
so much more than America got to hear.

JB

NAA Maine's Autism Walk

So there has been a change of plans and we will not be walking in Boston, instead we will be walking in Auburn, Maine!

The National Autism Association of Maine is holding its kick off event:

The 3-mile walk will be held on May 6th, 2007. Registration will begin at 9:00 AM at Festival Plaza in Auburn and the walk will kick off at 10:00 AM.

We are currently seeking both corporate and private sponsorships as well as walkers. For more information please contact Shawn and Emily at walk@naamaine.org or by calling 207-514-0303.


The walk will take place rain or shine!

See you there!

Newsflash: Autism is expensive

Autism costs society an estimated $3M per patient
Peter Broderick
617-349-2882
JAMA and Archives Journals


Each individual with autism accrues about $3.2 million in costs to society over his or her lifetime, with lost productivity and adult care being the most expensive components, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.

Autism costs society more than $35 billion in direct and indirect expenses each year, according to background information in the article. Relatively little is known about when these costs occur across the lifetime of an individual with autism.

Michael L. Ganz, M.S., Ph.D., Abt Associates Inc., Lexington, Mass., and Harvard School of Public Health, Boston, used data from the medical literature and from national surveys to estimate the direct medical and non-medical costs of autism, including prescription medications, adult care, special education and behavioral therapies. Approximate indirect costs, including lost productivity of both individuals with autism and their parents, were calculated by projecting average earnings and benefits at each age, adjusted for the fact that some autistic individuals can work in supported environments. Only costs directly linked to autism, and no medical or non-medical costs that would be incurred by individuals with or without autism, were included.

These costs were projected across the lifetime of a hypothetical group of individuals born in 2000 and diagnosed with autism in 2003. Costs estimates were broken down into age groups at five-year intervals, with the youngest group age 3 to 7 years and the oldest age 63 to 66 years.

"Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000," Dr. Ganz writes. "Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0."

Over an individual's life, lost productivity and other indirect costs make up 59.3 percent of total autism-related costs. Direct medical costs comprise 9.7 percent of total costs; the largest medical cost, behavioral therapy, accounts for 6.5 percent of total costs. Non-medical direct costs such as child care and home modifications comprise 31 percent of total lifetime costs.

Because these costs are incurred by different segments of society at different points in an autistic patient's life, a detailed understanding of these expenses could help planners, policymakers and families make decisions about autism care and treatment, Dr. Ganz notes. "Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," he concludes. "These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood."


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(Arch Pediatric Adolesc Med. 2007;161:343-349. Available pre-embargo to the media at www.jamamedia.org.)

Editor's Note: Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

PLEASE NOTE: Radio actualities from Michael L. Ganz, M.S., Ph.D., will be available in mp3 format on www.jamamedia.org at 3 p.m. CT on Monday, April 2.

Walk for Chandler!!

The National Autism Association is holding annual Road To Recovery Walk in Boston on May 6th and the Taylor family will be a'walkin'.

http://www.nationalautismassociation.org/walk.php

We would like to raise $3,000!

So if this blog has been a blessing to you, be a blessing to NAA and donate a few dollars in Chandler's name

http://www.firstgiving.com/GingerTaylor





UPDATE!
NAA is now holding a walk in Aubern, Maine! We will be walking there instead of Boston.

NJ autism is 1 in 94

N.J. shows high rate of autism in study
Findings stir debate among the experts
Friday, February 09, 2007
BY PEGGY O'CROWLEY
Star-Ledger Staff


One of every 94 children in New Jersey has autism, the worst rate among the states tested in the most comprehensive study of the disease. The results already have sparked a debate over whether the findings are due to environmental factors or better detection methods. The study, released yesterday by the Centers for Disease Control and Prevention, looked at the prevalence of the disorder in 14 states by analyzing health and education records of children but did not search for causes.

In New Jersey, the study included nearly 30,000 children in Essex, Union, Hudson and Ocean counties and found the rate to be 10.6 cases of autism per 1,000 children (or 1 in 94), compared to an average of 6.6 per 1,000 (1 in 152) children overall.

The statistics are even worse for boys where New Jersey's rate is 16.8 per 1,000 (1 in 60) compared to girls (4 in 1,000), according to the study.

"Autism is more common than we believed and is a public health concern," said Catherine Rice, a behavioral scientist who led the study.

Autism Spectrum Disorder is a neurological condition characterized by impairments in social, communicative and behavioral development. The severity of autism varies over a spectrum and is more than three times as common in boys. Whites are diagnosed at higher rates than African-Americans or Hispanics.

Officials suggested one reason for New Jersey's higher rates is an aggressive system of assessment and treatment for children with autism. There is also a higher concentration of autism experts, such as pediatric neurologists and developmental pediatricians, than in places like West Virginia, where rates were low. Other states studied included Arizona, Maryland and Wisconsin.

Another reason may be that the definition of autism has expanded within the last decade to include milder versions of the disorder, said Melissa Nishawala, a child psychiatrist who heads the Autism Spectrum Disorders Service at the New York University Child Study Center.

Walter Zahorodny, who heads the New Jersey Autism Study, attributed the state's autism rates to early intervention and school services for autistic children, and heightened awareness among parents. Children with perceived problems are evaluated by study teams assigned to schools. Children under 3 are evaluated by early intervention teams and given therapy under a program of the state Health and Senior Services Department.

The number of toddlers in the early intervention program has been rising steadily, said State Health Commissioner Fred M. Jacobs. The budget for the program increased from $22 million in 2000 to $79 million this year, $11 million short of the amount needed for the entire fiscal year, he said.

CDC: Autism Incidence now 1 in 150

From Unlocking Autism:

PREVALENCE OF AUTISM NOW 1 IN 150, ACCORDING TO NEW CDC REPORT

WASHINGTON, DC (February 8, 2007) -- This morning, the Centers for Disease Control and Prevention (CDC) released, through its Morbidity and Mortality Weekly Report (MMWR), the latest revised prevalence figures for autism. The report indicates that the prevalence of autism is now 1 in 150, up from the 1 in 166 figure reported by the CDC in January, 2004.

Today's report states, "Findings from this first U.S. multi-site collaborative study to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously."

Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks' Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute said, "These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism -- potential causes, better treatments and, hopefully, a cure -- must become that much more urgent today."

These new prevalence estimates are the first to come from multiple sites utilizing the same methodology for the same points in time. (Previous prevalence estimates have been from single sites and have relied on differing methodologies). According to the CDC, these data represent the most comprehensive effort to obtain accurate prevalence figures for Autism Spectrum Disorders to date, and offer important information about the prevalence of these conditions in multiple parts of the U.S.

As part of this study, six ADDM sites evaluated the prevalence of ASDs for children who were eight years old in 2000 (born in 1992): Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia.

An additional eight sites determined ASD prevalence for children who were eight in 2002 (born in 1994): Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin.

A-CHAMP needs You

From A-CHAMP:

A-CHAMP needs YOU!!!

Passion and Drive alone will not get the work done!

A-CHAMP is a national, non-partisan political action committee formed by parents in support of children with neurodevelopmental and communication disorders. We are dedicated to advancing public policy issues affecting our children, protecting their human and civil rights, educating the public and media, supporting candidates sharing our goals in state and federal elections, and holding accountable those in government who do not act in the best interest of our children.

In our short history, we have successfully:

• Initiated and coordinated state legislative efforts aimed at banning thimerosal from vaccines, achieving success in California, Delaware, Iowa, Missouri, New York and Washington

• Took the lead and forged a collaboration with 50 organizations leading to the passage of an autism insurance reform law that stops discrimination against treatment for autism spectrum disorder. Effective 1/1/07

• Contributed significant background documentation to the Columbia Journalism Review that resulted in an impressive critique of the NY Times and other media coverage regarding the thimerosal/autism controversy.

• Provided information for Robert Kennedy, Jr., contributing to his article “Deadly Immunity” which appeared in Rolling Stone and Salon.com. and Huffington Post op-eds.

• Coordinated The Power of Parents Rally in Washington, DC, October, 2005, gaining support from over 70 other organizations.

• Coordinated The Mercury Generation March and Lobbying Day in Washington, DC in coordination with the DAN! Conference in April, 2006

...and much more.


NOW for us to take on the tough issues for the years to come, we need your help. Our plan includes:

• Acceptance of the biomedical treatments our children need
• Insurance reform to pay for those treatments (state and federal)
• Legislation aimed at respite services and supportive home care
• Environmental research that focuses on vaccines
• Safer mercury-free vaccines and drugs
• Obtaining access to the Vaccine Safety Datalink
• Access to justice and reform of the Vaccine Injury Compensation Program

How can you help? We need donations to keep working for the children. Whether the donation is for $5 or $5,000, any donation is appreciated.

We have established a donations page on our website through Pay Pal, available at http://www.a-champ.org/donate.html .
If you would prefer to send a check to help continue the work of A-CHAMP, please make check payable to "A-CHAMP" mail it to:
A-CHAMP
c/o R. Krakow
2001 Marcus Avenue
Suite N125
Lake Success
New York 11042.

Your donations are appreciated will make a difference no matter how much or how little you contribute.
Sincerely,

A-CHAMP


A-Champ is a 501 (c)4 Political Action Organization, all donations are not tax deductible.
http://www.a-champ.org/donate.html

On behalf of all of kids thank you!

Autism Becomes Lapel Worthy

So for the first time I saw an autism pin on a lapel at an awards show. Steve Carrell was wearing the blue puzzle piece of Autism Speaks, NBC's almost official charity, just one more reason to love Mr. Carrell.

UPDATE: So looking around the room I am seeing many an NBC star with said pins.

Autism in China

China has more than 100,000 autistic children: expert
People's Daily (China)
December 07, 2006

China has at least 100,000 autistic children but there is a lack of
adequate professional treatment available, an expert said Thursday.

"According to the statistics from the second China National Sample
Survey on Disability, there are 100,000 autistic children in China.
But the real number is much bigger than that," said an official
surnamed Li with the Beijing Rehabilitation Association for Autistic
Children (BRAAC).

"Beijing alone has about 80,000 autistic children," Li said.

A report by China Central Television (CCTV) said China has at least
1.8 million people, including 400,000 children, suffering from
autism.

Autism is a mental disorder that makes it very difficult for people
to communicate properly, or to form relationship with others. It
accounts for a hefty proportion of mental disability among children,
but its cause is a mystery. Some scientists believe it is genetic,
while others say it could be environmental.

Doctors say children with autism should receive treatment between
the ages of two and 12. With proper treatment at the right time, 20
to 30 percent of sufferers will learn to be independent adults.

However, there are only a few institutions in the country with
adequate funding to give special treatment to autistic children,
and "a lot of autistic children miss prime opportunities for
treatment because of inadequate institutions and funds", according
to Jia Meixiang, deputy chairman of BRAAC.

"The burden falls almost completely on the shoulders of the
patients, and some parents have to fund rehabilitation centers
themselves," said Jia, quoting Wang Guoqiang, father of a autistic
child, who has donated 100,000 yuan each year since 2005 to BRAAC to
sponsor poor families with autistic children.

Autism patients are not covered by Chinese law on the Protection of
the Handicapped.

Earlier reports suggest that China is making efforts to improve the
situation of autistic patients. Vice Premier Zeng Peiyan called on
the public to care more for children suffering from autism at a
charity function to raise funds for the disabled on Dec. 1.

The China Welfare Fund for the Handicapped also pledged to set up a
special fund to support research into autism and establish
rehabilitation organizations for children.