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.

Injecting Sense in to CAA

Wade Rankin has a good commentary and expounds on Rep. Burton's reaction to CAA:

...Like some of our friends in various organizations that maintained their support of the CAA, Rep. Burton feels this flawed bill is better than none. I respectfully disagree with the distinguished gentleman, but I agree with his major point: this country’s vaccine policy ? and perhaps the nation’s health-care policy as a whole? will not be deemed trustworthy unless all plausible hypotheses are examined...

Read the whole thing.

Outing the Gay Republicans of Autism?

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

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

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

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

Update:

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

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

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

However,

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

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

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

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

...your thoughts?

CAA Pases

My reaction goes back and forth between "Yawn... Not gonna make a difference or have much impact", to "well maybe with $945 million in play some will accidently go to reasearch that will actually help my child and prevent more kids from getting sick".

Yes I have grown a bit cynical when it comes to government funded research.

NAA and SafeMinds are more optomistic.

From NAA and SafeMinds

Combating Autism Act Passes in the House

We’re pleased to announce the passage of the Combating Autism Act, approved earlier today by a House vote of 2/3's majority. The next step for the CAA is back to the Senate for deliberations on the House-approved version of the bill. We don’t anticipate problems there, but will be watching the discussions closely.

The main goal of NAA and SafeMinds in staying engaged in the legislative process was to obtain a directive for investigation of environmental factors, including vaccines and their preservatives, in the development of autism. Having achieved that goal, the next phase of securing appropriations for the bill will be difficult given the intense competition for funding. The war continues to deplete our nation’s financial resources, with current costs at approximately $5 billion a week according to government contacts.

As long as the legislative path for this bill seems already, it is clear that much work lies ahead in ensuring that the authorization for environmental research is appropriately funded. We will need the assistance of all who believe as we do that this area must be pursued if our kids are going to get the help they need. Soon, NAA and SM will be sending out action alerts on how the community can help us in our campaign with the Appropriations Committee.

With the passage of the CAA, we now have federal legislation that acknowledges the urgency of addressing the health care crisis of autism, the need for intensification and expansion of research into treatments and a cure (most importantly, the investigation of environmental factors relative to autism) and the need for community oversight among these critical research areas. We see this as a landmark event for our loved ones.

We thank everyone who has stood with us during this process. Parents, family members, and friends were instrumental in answering our action alerts by keeping up the pressure with their phone calls and letters to include the environmental provisions, treatment options, and critical oversight language. We are convinced that these collective efforts will make a positive difference for all children diagnosed with autism. Also, our heartfelt thanks go to Don and Deirdre Imus who steadfastly remained at the table on behalf of our kids, even without having a “dog in this fight”, as Mr. Imus would say. This is not an easy cause to champion, and we are heartened by their courage and devotion in doing the right thing for our children. By lending their support, they gave all of our children voices. We will be forever grateful.

National Autism Association
SafeMinds

Call to Barton to Restore Environmental Funding to CAA

December 1, 2006
The Honorable Joe Barton
2109 Rayburn House Office Building
Washington, D.C. 20515-4306
By FAX: 202-225-3052

Re: Restoration of vaccine and environmental research to the Combating Autism Act

Dear Chairman Barton,

In 2005 Senators Santorum and Dodd requested the diversity of groups that represent the autism community to work together to help draft the language that became the Combating Autism Act. After much toil and deliberation a draft that reflected the consensus of the autism community emerged. This draft had nearly universal support in the autism community.

The consensus bill included statutory language requiring research on the possible association between vaccines and autism, and statutory language requiring research on possible environmental factors in causing autism. For many individuals and organizations within the autism community these were the most important provisions in the bill.

As you know, the final version of S. 843 that was voted on and passed by the Senate did not include the statutory language for vaccine research. We are concerned that the statutory language requiring environmental research may not be included in the final version of the bill that may be voted upon by the House of Representatives.

We urge you to restore the statutory provisions for vaccine and environmental research to,H.R. 2421, the Combating Autism Act, as originally conceived in the consensus bill. Restoring these key elements would assure the support for this legislation by a large section of the autism community who believe that this research will be key to the eventual discovery of the causes of autism, the development of safe and effective treatments, and ultimately finding a cure for autism.

Respectfully,

Advocates for Children's Health Affected by Mercury,Poisoning – A–CHAMP
Adventures in Autism, California
Alan D. Clark, M.D. Memorial Research Fund, Missouri
Angels Wings for Autism, New York
Approaching Autism with Advocacy, Recovery & Education, Vermont
Autism and Vaccination, Pennsylvania
Autism Healing Network, Washington
Autism in Nebraska, Nebraska
Autism Recovery Network, Florida
Autism Recovery Resources of Washington
Autism Solution Center, Tennessee
Autism Support Daily Vermont
AutismFacts.com, Pennsylvania
Biological Education for Autism Treatments, Iowa
Biological Education for Autism Treatments, Minnesota
Brenen Hornstein Autism Research and Education Foundation, Illinois
Coalition for Mercury Free Nebraska, Nebraska
Coalition for Mercury-Free Drugs, Virginia
DAVID&SAM, Maryland
Dental Amalgam Mercury Syndrome, Inc., Minnesota
Developmental Delay Resources, Pennsylvania
FAIR Autism Media, Illinois
Foundation for Mercury-Injured Children, Missouri
Heal Autism Now Delaware, Delaware
Healing Every Autistic Life Foundation, Florida
International Hyperbaric Medicine Association, New Mexico
Moms Against Mercury, North Carolina
National Autism Association, Long Island New York
National Autism Association, New York City New York
National Autism Association, Ohio
National Autism Recovery Foundation, Missouri
No Mercury, Missouri
North East Louisiana Chapter, Autism Society of America, Louisiana
Parents for Autism Autoimmune and Vaccine Education, New Jersey
Patient Resource Center, Maryland
Research, Education, and Action for Autism Spectrum Children, Massachusetts
Schafer Autism Report, California
Tennesseeans for Safer Vaccines, Tennessee

The Age of Autism: What Newsweek Missed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that's the most urgent issue of all.

Autism One Radio: December Schedule

December Debuts and coming attractions on Autism One Radio
www.autismone.org/radio

Tuesday, December 5th at 4:00pm ET
Debut:
Judith Bluestone: The Fabric of Autism: Weaving the Threads into a Cogent Theory
In this dynamic multipart series we join Judith Bluestone to gain clarity through her gift of simplifying the many interrelated and often misinterpreted aspects of the Autism Spectrum. Judith, the renowned developer of the HANDLE approach and host Christopher De Michele, along with a cadre of practitioners, educators, parents, guardians, celebrity guests, and audience participants share and discover the foundations, evolutions, and case studies of HANDLE that breed hope through proven results. This is a cumulative and sequential series wherein you will learn of solutions focused on relieving the causes of ASD, not merely modifying behaviors. Join us for insights that untangle and re-weave the “The Fabric of Autism”.

Tuesday December 5th at 2:30pm ET
En Francais:
L'Autisme Vu au Quotidien avec Chantal Sicile-Kira
Topic: Conference Internationale Biomedicale et ABA a Paris (International Biomedical and ABA Conference in France)
Guest: Dr. Corinne Skorupka, Presidente fondatrice de l'association Ariane.
This is a major conference in France that covers both Biomedical and Verbal Behavior approaches to autism, the speakers for which includes:
Martine Ferguson; Dr. Diane Lynch Fraser; Boyd Haley, PHD; Robert Nataf, MD; James Neubrander, MD; Corinne Skorupka, MD; & Anju Usman, MD.

Thursday, December 7th at 2:00pm ET
Debut:
George Saidah and Amber Burton Small: Heart of Sailing
This program offers information about Heart of Sailing’s recreational therapy programs, including free weekly Daysails in various regions across the US. The program will focus on success stories and participants’ interviews, as well as other information and research about the therapeutic benefits of sailing for children with autism and other special needs. Interviews of participants and volunteers will provide more detailed information about therapeutic aspects including socialization, communication, teamwork, motor skills, and confidence building. The program will also serve as a travelogue by providing brief summaries of interesting cultural, social, and historical facts of the various Daysail regions. It will serve as a forum to connect parents and caregivers seeking alternative forms of therapy. Different regions will be highlighted, and the program will be offered in 4 different languages.

Saturday, December 9th at 12:00 noon ET
Dan Coulter: Life in the Asperger Lane
Guest: Brian King, a licensed clinical social worker who coaches and counsels people with Asperger Syndrome, along with family and others. Brian and one of his sons have been diagnosed with AS.

Tuesday, December 12th at 1:30 pm ET
The Real World of Autism With Chantal Sicile-Kira
Topic: Assistance Dogs for Children and Teens with Autism.
Guest: Patty Dobbs Gross, Executive Director of North Star Foundation.

Friday, December 15th at 12:00 noon ET
In Arabic:
Dr. Hosam Badr: The Autism Arabic Café
Dedicated to the Spirit of Dr. Rimland: Dr. Badr speaks about Dr. Rimland and his role as the father of the biomedical treatment of autism.

Sunday, December 17th at 1:00 pm ET
Susanna Moses: Hand in Hand
Guest: Shirley Levi, visionary, artist, singer, songwriter & autism advocate

Monday, December 18th at 12:00 noon ET
Special presentation:
Robert and Sandy Waters: The Candy Store
Guest: Brian Ray, guitarist for Paul McCartney

Sunday, December 24th at 1:00 pm ET
en Español
Susanna Moses: Mano en Mano
Guest: Shirley Levi, visionary, artist, singer, songwriter & autism advocate

Monday, December 25th at 10:00 am ET
Christmas Special
Robert and Sandy Waters: The Candy Store
Guest: Dr. Elmo of the hit song “Grandma Got Run Over By a Reindeer”

Debut:
(date to be announced)
Tami Duncan : The Lyme and Autism Connection
With autism numbers at such a high level, the amount of children infected with Lyme disease parallels this epidemic. It is estimated that up to 90% of children with autism also are infected with Lyme disease. The International Lyme and Associated Disease Society states that Autism and ADHD is one of the disorders that Lyme Disease can mimic. The symptoms of Lyme Disease are the same as those of autism. The Lyme and Autism Connection will explore testing, treatment options and how we can help our children begin to heal.

Recovering Children on the Cutting Room Floor

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

I thought I would share one of these stories.

From Kendra Pettengill:

I just learned a very tough lesson.

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

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

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

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

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

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

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

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

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

KEZI 9 News - Tristan Mcallister

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

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

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

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

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

Thanks everyone
Kendra

Online Confrence on Oxalates

OXALATES CONTROL IS A MAJOR NEW FACTOR IN AUTISM THERAPY!

Good day from The Great Plains Laboratory in Lenexa, KS! We are happy to announce that Dr. William Shaw has recently completed new research on the role of Oxalates in Autism. This research has been summarized in an article available on our website at http://www.greatplainslaboratory.com/oxalates/OXAL-web/GPL-OXLS-1.htm.

This comprehensive article includes an explanation of how oxalates (derivatives of oxalic acid) are metabolized in the body and influenced by intestinal flora, toxic metals, the copper/zinc ratio, and pyridoxic acid levels. The article provides a list of dietary changes and treatments that will minimize absorption of oxalates from the gastrointestinal tract and the symptoms produced by high oxalates.

All of this information and MORE is available in the format of a FREE web conference with Dr. William Shaw on TUESDAY, DECEMBER 12 AT 6PM (CST)!

You MUST pre-register to participate in the FREE web conference. Please visit our website link at http://www.gpl4u.com/online-conference/online-conference.html to pre-register!

The Mercury Moms (and Dads) Head Back to Atlanta

From COMED/Mom's Against Mercury/ACHAMP/United Methodists Women:

We're Headed Back To Atlanta!

To Mark the 7 Year Anniversary of the CDC Simpsonwood Meetings, Moms Against Mercury and CoMeD, Ask You to Save the Dates of
June 7th & 8th, 2007!

On June 7th leaders of the Women's Division of the United Methodist Church, an organization a million strong, will gather the faith community at Simpsonwood, to redress the deeds done there, seven years ago. The two day event is known as, "The Truth Is Coming To Light".

In support of "The Truth Is Coming To Light" event, we will be holding the "Simpsonwood Remembered" Rally on June 8, 2007.

To read about the efforts of the United Methodists Women's Division to protect children from mercury containing vaccines, please go to
http://new.gbgm-umc.org/umw/ (scroll down)

Hang on.....more information and details will be available in February 2007 via SAR, EOH Yahoo Board, Moms Against Mercury email list and A-CHAMP email list.

Until then....just remember...save the dates June 7th and 8th!

PLEASE FORWARD THIS MESSAGE TO OTHER BOARDS