April 30, 2007

Autism in God’s Economy: The Least of These

Autism Awareness month 2007 has been one like we have never seen before. It has seen Oprah do a show on Autism, for the first time after decades on the air. It has seen the CDC announce that Autism now affects 1 in 150 in this country. It has seen controversial Senate hearings to decide where the hundreds of millions of CAA money will go. It has seen a prominent autistic come out of the closet. Finally, and most heartbreaking, it has seen the worst shooting in US history perpetrated by Cho Seung-Hui who was reportedly autistic but never received the help he needed to live in a neurotypical world; and the irony of trying to cover up his autism during Autism Awareness month.

Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most experienced of us do not have the whole story.

But God does.

So in “Autism in God’s Economy” over the next six days I will discuss a few things that the Bible tells us about God’s perspective on those with Autism and on the rest of us. This series is predicated on the deity of Christ and the inerrancy of Scripture, which may be controversial ideas to some of my regular visitors. If they are to you, I invite you to read on none the less, and take a look at what God of the Bible says. If you are a professing Christian, then this is an important series for you to read no matter how autism affects you.

The Least of These

God’s economy turns the world’s economy upside down. Jesus brought with Him the radical message that the last shall be first, the meek shall inherit the earth and the poor will get the Kingdom of Heaven. We tend to hear these verses and think of them as nice thoughts, but Jesus did not intend them to be taken so lightly. He intended them as a window into His mind and a look into the future. And to prove it, he lived it out.

Jesus was God. He was the very same God that created the world and all of us that roam it. Everything belongs to Him. Yet when He put on a mortal body and came to walk in His creation, He didn’t come as a king, but a servant. He owned no property but the cloths He wore, He held no office, and He did not show up and order the governments to start doing His bidding. He had the right to all of it, but He laid claim to none of it.

Instead He chose lowly fishermen as his friends, socialized with social outcasts, spent His time touching lepers, gave relief to demon possessed psychotics and cleared out hospitals.

He did not ‘climb the ladder of success’. He lived a life that was oriented toward the broken and excoriated those in power who would not do their duty to serve them.

In God’s economy, the weak, the marginalized, the disenfranchised, the overlooked, the voiceless, the vulnerable, the sick, the oppressed, the grieving, the bullied, the exhausted, and those at the end of their rope are the ones who get into the VIP section. They are the ones who gain the attention and compassion of the God of the Universe.

If you have any doubt of this, and even if you don’t, read Matthew 25:31-46. It is one of the most important passages of scripture that any of us in the Autism community will ever read, and now that 1 in 150 are being diagnosed with it, almost all of us are in the Autism community.

Take a moment to read it.

It tells us that what we do in the lives of “The Least of These”, we do to Jesus Christ Himself.

If those of us who claim to be Christians want to know if we really are, and be clear, just saying you are a Christian don’t make it so, then examine what you have done in the lives of the most vulnerable people in your world.

In God’s economy, they are to be our highest priority. He has chosen them to represent Him for the purposes of His judgment in this world.

Matthew 25 is not an empty metaphor, it is one of the very difficult truths that our destiny hinges on, and it was the last thing that Jesus stressed before He started His walk to the cross.

If you know anything about autism and you are not of the belief that those with autism who cannot advocate well for themselves are among The Least of These in this society, then pay closer attention.

Tommorrow: Those With Autism

April 28, 2007

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.

April 27, 2007

Chandler Does a New Thing

"Webster"! Chandler yelled as he got out of the car after school today when he saw his brother standing in the doorway.

He ran up the sidewalk and up the stairs and threw his arms around his brother and said, "Gimme a hug", and squeezed and squeezed his big brother, with a huge smile on his face. Finally Web tried to pull Chandler's arms off his neck, but nothin' doin'. When I got there, he put out one arm and said, "Mommy"! So I bent down and he hugged both of us around the neck, smashing all three of our heads together.

He was the one in charge of that hug and I could barely keep my balance.

You would have thought his brother had just come back from war by the greeting he gave him, but it had only been four hours since they had seen each other.

Chandler has never been that excited to see anyone. Ever.

We started him on the SCD diet last week and he has had lots of prayer this week from lots of people that it would help him out. He has been a bit more verbal this week, but the thing that has been the most dramatic is just how affectionate and attentive he has been to us.

I don't remember anything in the research that says that it would turn kids into love machines. Perhaps a study should be done.

The Age of Autism: Ground Zero

The Age of Autism: Ground Zero

This column has long made the controversial case that autism had a beginning, a "big bang" if you will. That moment was 1930 -- no U.S. cases before then fully match the classic description of the disorder. Now let's take the next logical step: Not only did autism have a big bang, it also had a ground zero -- a place where many of the first cases concentrated before the disorder exploded nationwide. Ground zero was the nation's capital, in particular the Maryland suburbs where cutting-edge government research in the 1930s and 1940s exposed families to the chemical that first triggered the baffling disorder.

The foundation of this argument was laid out in the most recent Age of Autism column, "Mercury link to Case 2." Case 2 was known only as Frederick W., but we identified him as the son of a prominent plant pathologist named Frederick L. Wellman. At the time "Frederick W." was born, we showed, the senior Wellman was doing advanced work at the U.S. Agriculture Department's Beltsville research center in suburban Maryland, just outside the nation ' s capital. Wellman was experimenting with plant fungi and ways to kill them, and his extensive archive makes clear one compound he studied was ethyl mercury fungicide -- the exact kind also used in the controversial vaccine preservative thimerosal, which many parents blame for the recent rise in reported cases (mainstream experts say it has been ruled out as a cause).

Ethyl mercury in both vaccines and fungicides was pioneered and patented in the 1920s through the work of Morris S. Kharasch. When Kharasch filed the first relevant patents, he was a chemistry professor at the University of Maryland in College Park, which actually adjoins the Beltsville research center.

More links to Washington are evident in other early cases described in 1943 by Johns Hopkins University child psychiatrist Leo Kanner, who first diagnosed the disorder in Frederick W. and 10 other children born in the 1930s. Reading between the lines of his landmark 1943 paper, the very first autistic child seen at Hopkins (in 1935) was "Alfred L.," whose father was a lawyer and chemist at the U.S. Patent Office. Also a clear connection to newly patented chemicals, the federal government and the nation ' s capital. A child later profiled by Kanner was named Gary T. "Gary originally lived in Philadelphia," Kanner wrote in 1951. "The family then moved to Greenbelt, to Chicago, and back to Greenbelt." Take a look at Greenbelt, Md.: It also abuts the Beltsville agricultural center in the Washington suburbs.

Recently, a mutual friend in Washington introduced me to a 58-year-old man with Asperger's disorder, the milder version of autism. We got together for lunch, and when I asked where in the Washington area he lived, I was both startled and somehow not surprised: Riverdale, Md. That's another Washington suburb that clusters with the College Park-Beltsville-Greenbelt dots I was already plotting. What's more, he was born there in 1948 in the same house he lives in now.

I asked what his father did. He told me he was an engineer. That fits a stereotype of Asperger's affecting kids of scientists and engineers -- the so-called "geek syndrome," nerdy brainiacs hooking up to somehow spawn a generation of kids with "autism lite." I asked him what kind of engineer his father was. The answer: a mechanical engineer who tested guns for the Navy at the time he was born. And where was that? At what is now the Naval Surface Warfare Center in White Oak, Md. -- just a hop and a skip across I-95 from the Beltsville agriculture center.

I already had come across his father's line of work. In a 1972 paper, Kanner talked about a child named "Walter P.," born in June 1944. His father, too, was "an ordnance engineer for the federal government." Kanner didn't say where Walter P. was from, but the similarity makes me wonder. Mercury fulminate was widely used as a detonator for explosives and armaments. Could those two fathers, like Frederick W., be linked to cutting-edge research involving mercury? (My Riverdale acquaintance said his father sometimes brought containers of mercury home from the weapons center for the kids to play with.)

And is that kind of research a reason Leo Kanner, at Johns Hopkins in nearby Baltimore, started seeing cases of this "markedly and uniquely" different disorder in the 1930s and 1940s? Just last week I got an e-mail from the mother of a child with autism who lives on the other side of the country; her son was born nowhere near what I'm calling ground zero. But as I outlined this idea to her, she had a shock of recognition:

"I lived on a farm in Burtonsville, Md., while young and it is near Beltsville. The farm was surrounded by forest and abutted the Patuxent River." Of course, not all the early cases cluster this way. But of the two other original "Kanner kids" from his 1943 paper that I ' ve been able to identify along with Frederick W., one grew up in a town called Forest, Miss., a center of timber farming and planting; the other was the son of a forestry professor at North Carolina State University. Ethyl mercury fungicides were used to treat seeds, saplings and lumber in the 1930s, and in both places (as well as in Beltsville) the newly launched Civilian Conservation Corps was hard at work planting trees, cutting timber and building things with it. To sum up: The first cases of autism seem to radiate outward from a central point -- as big bangs tend to do. As those exposures expanded, so did autism.

This suggests a new and deeply disturbing truth about the Age of Autism: our fate is not in our genes, Dear Brutus, but in the chemicals that increasingly pollute our world and our children.

April 25, 2007

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.


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


April 24, 2007

Jonathan's Law

It was a surprise to me that parents anywhere could not have access to their children's records for anything... much less a residential treatment facility.

Jonathan's Law Goes To Gov. Spitzer for Signature

Tell Governor Spitzer to Sign Jonathan's Law
Protect Your Kids; Get Access to Their Records

Jonathan's Law – A. 6846–A/S. 3105

In February 13-year-old Jonathan Carey tragically died while in a residential care facility. Jonathan's parents had been fighting for years to obtain his records when the tragedy occurred. They are now campaigning to make important records available to parents so that they may better know the care being provided to their children. While most direct care workers are caring and responsible – and work under difficult circumstances – a parent needs to know what is happening to their developmentally disabled child.

The New York State Legislature passed Jonathan's law on Monday, April 23, 2007 and sent the bill to Governor Spitzer for his signature. Support for Jonathan's Law was led by Assembly Member Harvey Weisenberg, longtime advocate for the developmentally disabled.

Tell Governor Spitzer to sign Jonathan's Law.

Click Take Action if you are reading this in an email to Send a Message to Governor Spitzer. If you are reading this on our web site scroll down to send a message.

For a news account of Jonathan's law http://www.examiner.com/a-681399~Senate_approves__Jonathan_s_Law__to_protect_disabled.html.

To read the text of Jonathan's Law, A. 6846-A/S. 3105 Click HERE.

Protect Our Children
Urge the Legislature and Gov. Spitzer to Enact Jonathan's Law.

Thanks for fighting for the rights of developmentally disabled children and their families.

Message Brought To You By A-CHAMP
Advocates for Children's Health Affected by Mercury Poisoning


April 23, 2007

A Day of Prayer and Fasting

Thank you to Sam for inspiring this International Day of Prayer and Fasting.

Thank you to his parents for loving their son and listening to God.

Today we ask that you join us in praying for those with autism, their friends and family, and the world that God has charged with serving them.

First, pray for Sam. He inspired this day and he should be the first on our list to pray for.

Second, pray for autistic people, children and adults, and their families around the world. Theirs is a difficult life made more difficult by the people around them who just don't understand. Pray that these people would gain the world's attention and that they would be given the support that they need, socially, politically, medically, financially, emotionally and specifically spiritually. Pray that the world would seek to understand them and be patient with their ways that are so different from ours.

Pray that those who have much in this world will help bear the burdens of those affected by autism, and that both will be better for it.

Pray for healing in those with autism and in autistic communities. Physical healing, healing of broken hearts and of broken relationships.

Pray for those with autism, that God would speak directly to their hearts and let them know how precious and valuable they are. That all of the messages that the world sends them, both real and perceived, that they are not as “________” their typical neighbors or siblings would be wiped away, and they would see the very special honor that God gives to them.

For those of you would like to pray for Chandler today, here are the things that we are asking for him:

For Chandler's healing: That the toxins will be removed from his body, that his digestive system would be healed, that the inflammation in his body would be gone, that his body would begin to produce its own glutathione, that any viruses that Chandler has would be killed completely and that his brain would get the nutrients it needs to heal itself.

For Chandler's diet: We have started him on a VERY clean diet of not much more than fruit, veggies, meat and nuts (the SCD diet). No prepackaged food, all home made, hormone free and organic. Pray that he will find foods that he loves and that he will begin to eat vegetables. Pray that his digestive problems would be healed.

For Chandler's safety: Chandler's innocence and lack of fear put him at serious risk for accidents and victimization. Time and time again we have chased him as he headed toward traffic, and you may know that autistic children are often bullied by other school children and are often victims of prejudice and discrimination. What you may not know is that autistic children are 6 times more likely to be victims of sexual assault. They make safe targets for assailants because they cannot tell their parents what has happened to them. Ask God to have his strongest Angels surrounding Chandler at all times.

For Chandler's education: He has an IEP next week that will set the course for his education. Pray for wisdom for us and the professionals involved in his care. Pray that he will get ALL the services that he needs to thrive.

For Chandler's parents and brother: That they would surrender completely to God. That all the idols and obstacles in their lives that keep them from doing the right things for Chandler would be brought to light and gladly handed to God.

For Chandler's resources: God “owns the cattle on a thousand hills”, it ALL belongs to Him. Pray that He would open up his storehouses and pour out his blessings on Chandler. Not just the financial resources to serve and heal him, but spiritual resources, emotional availability, wisdom and even energy to Chandler, and even more so to those surrounding him and entrusted with his care. It takes a lot to serve an autistic child well. Pray that God's supernatural provision is given to all those who are in Chandler's life and that they pour it back into him.

For Chandler's family: Sadly, Chandler's extended family is broken. The only thing that will bring the family back together and heal it will be a working of the Holy Spirit to bring those who have wronged Chandler to confession and repentance. Pray that all the lies that have been spoken and believed will be wiped away and replaced by absolute Truth.

For Chandler's ministry: God has clearly said in Matthew 25 that what we do to the least of these, we do to Jesus Christ Himself, and those actions are what He will use to judge the hearts of men. Chandler, who is one of the least of these, has been given a very special mission in this world, to be a fork where one takes the narrow road or the wide road. It is easy to ignore the needs of someone with autism and get away with choosing to serve yourself instead. God stands behind Chandler at all times and watches what we do to him and what we don't do for him and uses it as a litmus test of our salvation.

In God's economy, Chandler is the most powerful person in our community. He is the weak thing that God has chosen to shame the strong. He is one of the Meek that will in inherit the earth, and one day he will be our landlord. Pray for the people whose lives he touches, that God would use Chandler to show them that God's economy is completely opposite to the one in which the world operates. Pray for them that even their failures to serve Chandler, and therefore Christ, would bring them to repentance and show them that they really have nothing to offer to God, but their own brokenness.

… God is excited to completely forgive every broken person who asks for it.

Pray that God would openly bless, in every way, those who serve Chandler.

And finally and most importantly:

For Chandler's understanding of God: Pray that the Holy Spirit would be in there with Chandler, where we cannot go, teaching him when our words cannot.

Thank you again for loving my son and praying for him.


April 22, 2007

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

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.

April 20, 2007

Not Guilty By Association

As I look around today I see a lot of fear from the autism community, both parents of autistic children, and ASD adults, that the fact that Cho Seung-Hui's name has been linked to autism, it will result in increased prejudice against others with autism.

Perhaps it is just hopeful thinking, but I really don't think that will happen. Now we have only been on this road for three years, and we have already been seriously mistreated by those who just didn't understand autism and that should have known better, so I don't by any stretch want to give the impression that I am looking at this through rose colored glasses. Arrogance and prejudice among those whose lives are not touched by autism is real and needs to be taken very seriously.

However, the compassion that I see from the growing majority of people for what people with autism and their families go through while living in a world that just does not work right for them, I believe, will not be largely changed by this.

Even if Cho's diagnosis is confirmed with complete certainty, with autism as pervasive as it is (1 in 150), and autistic killers as rare as they are (I can think of 2 reported cases) people will come to the conclusion that his psychopathology was in addition to autism.

Sure there will be a few people who make the leap that all autistics are potential shooters, but those people are probably looking for a reason to look down on those who are different from them, and would have found another way to do it if not for this. Those people would have been lost to the cause of understanding and respecting those with autism regardless.

I don't know what will come in the days ahead, but it seems to me that the fact that the media is not jumping on the autism piece of this story, and we are not seeing AUTISM! graphics floating across pictures of Cho's face, says that even the 24 hour news networks, who tend to suck the marrow out of every facet of a big story, don't even really think that this guys autism is why he killed.

The autism community is talking about this a lot more than the rest of the world.

Autism is pervasive and almost everyone knows someone with autism now. They see the tenderness and sincerity that can come out of our kids. They won't be fooled into thinking that this incident teaches that autistics are dangerous any more than it teaches that Asians are dangerous.

I Might be a Mason Alum but...

Today We Are All Hokies

As can be the case with such horrific events, despite watching the news for five straight days, despite the fact that I am a Virginian and spent time on the Virginia Tech campus, despite the fact that I thought this was a truly awful, despite writing about the killer, despite having lived in Fairfax, the next town over from him, I had no emotional reaction to what happened. I have been looking at the whole thing in numb disbelief. It truly did not feel like it was real.

Until I saw this cartoon today.

Day of Prayer and Fasting

Thought I would add this wonderful email from Children of Destiny about Monday's day and prayer and fasting.

A Call to Fast for Autism on April 23 Dear Daily Prayer Subscriber,

As many of you know, April is Autism Awareness Month here in the United States. In the several years since we have been involved in the cause of autism, we have been very pleased to see that with each passing April, more and more awareness of and programs devoted this devastating disorder have been presented in the media. Sadly, however, with each passing April, more and more children and families are devastated by the diagnosis.

This April, Paulette Britton, mother of Sam, was impressed to call for a Day of Prayer and Fasting for those affected by autism. We commend Paulette for this great effort. We at Children of Destiny fully endorse this opportunity to join with many others from around the world in fasting and lifting our prayers before the Lord on behalf of those afflicted with autism. Therefore, we are asking that you would consider joining with us as we humble ourselves before the Lord in Prayer and Fasting for our children and adults with autism. The official fast is for 24 hours and runs from sun up on Monday, April 23 until sun up on Tuesday April 24.

Why Fast?

For the Christian, fasting is an essential part of spiritual life. Even Jesus agreed that some things simply could not be accomplished without fasting.

Fasting removes spiritual clutter and puts us in a better position to receive from God. By fasting, we make it possible for the Lord to reveal Himself to us in a greater way, not because He speaks more clearly, but because we can hear Him more clearly.

Why is that? Because fasting is a sacrifice of submission and worship unto Him. It is because we have given up something temporal in order to pursue something eternal. To the degree we allow ourselves to hunger after God is the degree to which we will be satisfied by Him.

The fruit of our fasting is God's to decide. We cannot manipulate God through it, but we certainly can please Him. Fasting almost certainly will produce a deeper covenant relationship with Him. Isaiah 58, the great chapter on fasting, offers us a list of additional benefits that fasting can produce including deliverance, giving, guidance, healing, increased protection, spiritual cleansing, answers from God, increased fruitfulness, and restoration of spiritual things that have been lost (This material has been adapted from the book Possessing Your Inheritance by Chuck D. Pierce and Rebecca Wagner Sytsema, pp. 134-135).

Of course, we are asking that you join us in this fast as we specifically ask God to heal children and adults with autism. Paulette suggests that you make a specific list of what you are asking God for as you fast. Doing so is essential because it not only focuses you in prayer, but also allows you to go back later and see how the Lord has moved.

Here at Children of Destiny, we recommend that this list not just be generic, such as "God, please heal Nick of autism," but rather a list of specific issues related to the autism. For example, potty training, aggressive behaviors, language, running away, digestive disorders and so forth. The reason for doing this is so we can see the hand of God moving in very specific ways as issues on this list improve. Not only does it encourage us that God is moving on behalf of our loved one, it also increases our faith for the whole miracle!

Please Join Us

Again, the fast runs from sunrise on April 23 to sunrise on April 24. Many will likely choose to fast from all food. However, if for any reason you are unable to fast for the entire 24 hour period, or are unable to fast from food, please consider joining us anyway. Perhaps you can consider a fast of any beverage other than water, or perhaps you can abstain from sugar. We ask that you are wise in making your decisions to fast and do not compromise your health in any way. If you have health issues and are not able to consult with your doctor before Monday, please consider fasting in some other form -- perhaps from television or reading for pleasure. Also consider asking your children or granchildren to fast as well. If a food fast is unwise or unwelcomed, kids could also be encouraged to fast from video games or other daily indulgences.

Again, we thank Paulette for putting together this great initiative. She has put together a web site containing all the information necessary to participate. We encourage you to visit her site at http://www.asdPrayandFast.com.

Please pass this information along to your friends and family and listmates.

We would be thrilled to hear of your plans to participate, and also of the answers to prayer you see!

Jack and Rebecca Sytsema
Children of Destiny

April 19, 2007

Cho Seung-Hui Reportedly Diagnosed With Autism as a Child

From the first time we heard that, "he didn't talk at all and kept to himself", we all thought Asperger's, but no way was I going to say it first. My mind immediately went to the murder/suicide perpetrated by young man with Asperger's in Orange County about a year and a half ago.

It is clear that he had many additional problems, and all of us cringe at the thought of this man being any way associated with autism, but if he had autism, we need to take a good hard look at his life and learn what ever we can from it so that we can help those with autism that we care for. Was he toxic, was he bullied, did he get any appropriate interventions or support after his diagnosis at all?

His life is a cautionary tale that we all should learn from with humility.

AutismLink Reacts to Diagnosis of Autism in Virginia Tech Shooter

PITTSBURGH, April 19 /PRNewswire-USNewswire/ -- AutismLink and
Autism Center of Pittsburgh Director Cindy Waeltermann today issued a
statement regarding the recent revelation that Virginia Tech shooter Cho Seung-
Hui was diagnosed with autism as a child.
"While the entire autism community in Pittsburgh and across the nation are devastated by the recent events at Virginia Tech, we would like to caution the public not to stigmatize children or individuals with autism.

Cho likely did not receive the help and support that he needed early on -- that is why early intervention is so important, and that is why places like the Autism Center of Pittsburgh exist. The act of one individual should not reflect upon the entire autistic population.

It is unfair to blame Cho's actions on autism when he was clearly psychologically impaired and likely had another disorder in addition to his autism. His psychological evaluations apparently revealed a dark history that concluded that he was an imminent danger to himself and others and was also depressed.

This is a wake up call that stresses the importance of early intervention, research, and appropriate treatment strategies. Many strides have been made in autism spectrum disorders and research has consistently shown that when children receive the help that they need early on they are more likely to become more adept at social and communication skills.

Autism affects 1 in 150 children and is now the most commonly diagnosed developmental disability in the world. It is time to recognize autism for the epidemic it is."

April 18, 2007

Julie Gerberding: Getting out the BIG shovel

I sit here trying to come up with a post on this that does not contain any offensive synonyms for animal leavings, but I am hard pressed to do it. When I signed onto this debate almost three years ago, we heard the same thing from the CDC yet they have done NOTHING to get us any closer to finding answers to the questions that parents have been screaming at them. It is completely absurd.

The statements Gerberding makes in this "hearing" are laughable.

CDC chief: Autism not overlooked

The Atlanta Journal-Constitution
Published on: 04/18/07

Washington — Autism is an "urgent" concern of the Centers for Disease Control and Prevention, its director, Dr. Julie Gerberding, told senators Tuesday.

Although the CDC has been criticized by some autism activists and members of Congress, Gerberding said the Atlanta-based agency is best equipped to do the surveillance and research needed to understand and respond to the disorder.
THEN DO IT!!!!!!










"The profound lifelong impact of autism spectrum disorders, tremendous costs to the affected individuals and their families, the lack of known causes or cures and concerns about the increased rates of diagnosis all make autism spectrum disorders one of our urgent realities," she told a Senate appropriations subcommittee.

She said "CDC recognizes that parents want answers," adding, "We share their frustration at not having more answers about the causes and possible cure."
This statement is just a lie. No other way to say it. She is lying.
Sen. Tom Harkin (D-Iowa), whose Appropriations subcommittee on the departments of Labor, Education and Health and Human Services held the hearing, said that "millions of families are grappling with the profound difficulties of understanding and coping with this disease."

"We've got to do something about this," Harkin said.

Testifying with Gerberding were the director of the National Institute of Mental Health and a generally supportive group representing families and advocacy organizations.

Not represented at the hearing were autism activist groups that have accused the CDC of concealing evidence of a link between childhood vaccinations and the disorder.
I am sure that our invitation was lost in the mail. Again.
However, while the Senate committee hearing was under way, two members of the House announced that they will reintroduce legislation to end what they called "a conflict of interest whereby CDC is responsible for both vaccine promotion and vaccine safety."

Reps. Dave Weldon (R-Fla.), and Carolyn Maloney, (D-N.Y.,) said they will introduce the bill Thursday. Their bill last year that would remove the CDC's responsibility for vaccine safety did not pass.


My good friend Wade responds to my post with a What What, and like me, far less civility than those who read his blog are used to.

From John Gilmore of A-CHAMP:

If you were to deliberately design a plan to not find the cause of a disease, or even accurately count how many people are affected with a disorder, you couldn't have done better than the CDC management under Dr. Gerberding. She has not brought us an inch closer to finding the cause of autism or any treatments. She has destroyed confidence in the CDC and much of the federal public health apparatus.

It is time for her to go. And I think all autism organizations should give serious thought to calling for her resignation.

John Gilmore

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.

Day of Fasting and Prayer for Autism

Monday April 23rd http://www.asdPrayandFast.com

From Unlocking Autism:

As Autism Awareness Month approached us this year, I am sure that so very many of you wondered what you could do to make a difference. Our children are so precious to us and so many of them are still suffering in silence or struggling so bravely in this world that assaults their senses at every corner of their lives.

Paulette Britton, mother of Sam, turned to God for an answer to what she could do to make a difference and below you can read her words as she was impressed to call for a Day of Prayer and Fasting for those affected by autism.

I call on each of you to join with us on Monday, April 23, as we humble ourselves before the Lord in Prayer and Fasting for our children and adults with autism. Please share this info with your friends and family and listmates.


Paulette lives in Southern California and you may contact her with questions and inquiries at: pdbrit@mac.com.

Nancy Cale,
Unlocking Autism

April 16, 2007

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


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.”


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.”


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.”


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.


Student with autism is silent no more


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.

April 14, 2007

Love Me!

Got nominated for a thing. Cool.

My site was nominated for Best Parenting Blog!

Sneaky Senate

The politics of Autism just gets odder and odder. It seems to be about being able to say that things are being done with out doing anything, and that open conversation is taking place when the conversation is being strictly controlled. The voices that would ask the right questions are not allowed into the room.


Surprise Senate Hearing on Combating Autism - Community Not Notified

We learned for the first time Thursday that the Senate has scheduled a hearing Tuesday, April 17, 2007 entitled "Combating Autism: Undertaking a Coordinated Response". There was no notice of this hearing to the many autism organizations other than Autism Speaks and possibly ASA. We learned of it only because one of our CAA Watch A-CHAMP District Leaders inadvertently heard of the hearing from a highly placed source.

Many of us have placed calls to Subcommittee Chair Sen. Harkin's staff, including members of our strong Iowa contingent. None of us have had the courtesy of a return phone call.

The list of witnesses is pasted below.

On the second panel are two representatives of Autism Speaks and Dr. Judy Favell, former President of the American Psychological Association, Division 33. Dr. Favell is a behaviorist who received a large Dept of Education grant to research the provision of services to children with autism by interactive video. The program, called "telehealth" involves installing a video camera in one's home so that families may engage in therapy sessions at long distrance by video.

Dr. Favell appears to be closely associated with three for-profit ventures. One is Advoserv (www.advoserv.com), a Florida corporation that provides residential and other services in Florida, Delaware, Maryland and New Jersey. The second is Cnow, billed as committed to being the "nation's premier telehealth solutions provider." (http://www.cnowinc.com/) The third venture is the National Institute of Telehealth, which develops the behavioral treatment plan that is implemented via video. Telehealth and telemedicine research is being funded by NIMH, headed by Dr. Insel, one of the witnesses at the hearing. (http://tinyurl.com/2uzyje)

No stakeholders are participating in this hearing.
Welcome to the BRAVE NEW WORLD of autism.

Senate Committee on Appropriations
Hearing Schedule for the Week of April 13, 2007

For more information, media should contact (202) 224-3904.

Tuesday April 17, 2007
2:00 p.m. Labor, Health and Human Services, and Education SD-124
Agenda: Combating Autism: Undertaking a Coordinated Response

Witnesses: Panel I:
Dr. Julie Gerberding, Director
Centers for Disease Control and Prevention
Atlanta, Georgia
Dr. Thomas R. Insel, Director
National Institute of Mental Health
Bethesda, Maryland

Panel II:
Robert C. Wright
Vice Chairman and Executive Officer
General Electric Foundation
Fairfield, Connecticut
Dr. Judith E. Favell
Chief Executive Officer, AdvoServ
Executive Director, The Celeste Foundation
Mount Dora, Florida
Bradley Whitford
Volunteer Spokesperson
for Autism Speaks Organization
New York, New York