Does Geri Dawson Know What Glutathone Is?

Interesting story...

I was speaking with an autism researcher who told me about an exchange he had with Geri Dawson, the chief science officer for Autism Speaks.  He attended an AS reception at a university and approached Dr. Dawson to ask her what she thought about the research surrounding glutathione and autism.  Dr. Dawson replied that she was not familiar with gluthathione/autism research.

There are 12 studies on GSH and Autism (all of which I have listed below) and all of them have found low glutathione problems are tied to autism.

My son was diagnosed with autism in the spring of 2004, and I became familiar with glutathione/autism research before the summer was out.  I believe it is absolutely unacceptable for the "science officer" of Autism Speaks, whom GQ declared one of the "Rock Stars of Science," to not be intimately familiar with what may be one of the most key aspects of why our children as so susceptible to environmental injury, low glutathione levels that leave our children unable to detox.

And as Autism Speaks has highlighted in their own "AUTISM SPEAKS TOP 10 AUTISM RESEARCH ACHIEVEMENTS OF 2011" Autism is a condition brought on by environmental exposures.  And being that one of the GSH/autism studies was actually funded by Autism Speaks, again... no reason that Dawson should not be all over this.

The possibility that Dr. Dawson could not even offer a basic response on a question about glutathione, to put in mildly, troubles me.  The fact that she believes that she is qualified to be directing autism research, knowing so little about this environmental illness, makes me angry.  The fact that Geri Dawson has applied to be on the IACC makes me crazy.  Because with her title, and her "Rock Star" PR, she might just be added to it by Thomas Insel.

Just to be sure that I had my fact straight about Dr. Dawson's response to the GSH question.  I wrote to her to confirm:

Subject:	Glutathione
Date:	Tue, 15 Nov 2011 10:59:06 -0500
From:	Ginger Taylor
To:	Geri Dawson

Dr. Dawson,

I am writing a piece on you and would like your response before I publish.

I spoke with a researcher who reports approaching you at an AS reception earlier this year and asking you about glutathione research.  He told me that you said were not familiar with research on glutathione. 

As the glutathione connection in autism is a foundational one to understanding why these particular children are vulnerable to environmentally caused autism (including vaccine induced autism, which you continue to deny despite the evidence HRSA's own admission that vaccine induced encephalopathy can cause autism, and that they list the symptoms of autism on the VICP injury table), and as it is among the first interventions that families implementing biomedical intervention for autism learn about, you can see how alarming that AS's chief science officer seems to have no knowledge of its role in autism causation or treatment. 

I will be writing about this exchange, but wanted to give you a chance to comment before I publish. 

When you were approached about glutathione, did you have any understanding of its role in autism?  What is your understanding now?  Since every study done on GSH and autism has found a link, and since AS has actually funded research on GSH, it is appropriate for AS to have a science officer who is not conversant on it?

Thank you,

--

Ginger Taylor
Adventures In Autism
Facebook
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Vaccine Epidemic
818-402-9672

That was more than a month ago, and no response.

So what does Dr. Dawson actually know about this environmental illness?  A comment she made on her "Rock Stars of Science" interview might give us a hint.

"Best moment in medicine/research: Recently, my colleagues and I published the first randomized clinical trial showing very positive benefits of early intervention for toddlers with autism. The moment I saw the results of that study was one of the best moments of my research career."

Dr. Dawson's best moment in research was when she confirmed what we have known for probably twenty years, but the fact that children might be prevented from needing that early intervention in the first place simply by testing infant glutathione levels... completely lost on her?

Listing the GSH research for Dr. Dawson in the hopes that she will review it and realize that she might have a chance to prevent the boat from developing a hole it in, rather than having to spend a lifetime bailing it out.


1. Nutritional and Metabolic Status of Children with Autism vs. Neurotypical Children, and the Association with Autism Severity. Adams JB, Audhya T, McDonough-Means S, Rubin RA, Quig D, Geis E, Gehn E, Loresto M, Mitchell J, Atwood S, Barnhouse S, Lee W. Nutr Metab (Lond). 2011 Jun 8;8(1):34.

2. The severity of autism is associated with toxic metal body burden and red blood cell glutathione levels. Adams JB, Baral M, Geis E, Mitchell J, Ingram J, Hensley A, Zappia I, Newmark S, Gehn E, Rubin RA, Mitchell K, Bradstreet J, El-Dahr JM. J Toxicol. 2009;2009:532640.

3. Novel plasma phospholipid biomarkers of autism: mitochondrial dysfunction as a putative causative mechanism. Pastural E, Ritchie S, Lu Y, Jin W, Kavianpour A, Khine Su-Myat K, Heath D, Wood PL, Fisk M, Goodenowe DB. Prostaglandins Leukot Essent Fatty Acids. 2009 Oct;81(4):253-64.

4. Metabolic biomarkers related to oxidative stress and antioxidant status in Saudi autistic children. Al-Gadani Y, El-Ansary A, Attas O, Al-Ayadhi L. Clin Biochem. 2009 Jul;42(10-11):1032-40.

5. One carbon metabolism disturbances and the C677T MTHFR gene polymorphism in children with autism spectrum disorders. Paşca SP, Dronca E, Kaucsár T, Craciun EC, Endreffy E, Ferencz BK, Iftene F, Benga I, Cornean R, Banerjee R, Dronca M. J Cell Mol Med. 2009 Oct;13(10):4229-38.

6. Efficacy of methylcobalamin and folinic acid treatment on glutathione redox status in children with autism. James SJ, Melnyk S, Fuchs G, Reid T, Jernigan S, Pavliv O, Hubanks A, Gaylor DW. Am J Clin Nutr. 2009 Jan;89(1):425-30.

7. Biomarkers of environmental toxicity and susceptibility in autism. Geier DA, Kern JK, Garver CR, Adams JB, Audhya T, Nataf R, Geier MR. J Neurol Sci. 2009 May 15;280(1-2):101-8.

8. A prospective study of transsulfuration biomarkers in autistic disorders. Geier DA, Kern JK, Garver CR, Adams JB, Audhya T, Geier MR. Neurochem Res. 2009 Feb;34(2):386-93.

9. Abnormal transmethylation/transsulfuration metabolism and DNA hypomethylation among parents of children with autism. James SJ, Melnyk S, Jernigan S, Hubanks A, Rose S, Gaylor DW. J Autism Dev Disord. 2008 Nov;38(10):1966-75.

10. A case series of children with apparent mercury toxic encephalopathies manifesting with clinical symptoms of regressive autistic disorders. Geier DA, Geier MR. J Toxicol Environ Health A. 2007 May 15;70(10):837-51.

11. Metabolic endophenotype and related genotypes are associated with oxidative stress in children with autism. James SJ, Melnyk S, Jernigan S, Cleves MA, Halsted CH, Wong DH, Cutler P, Bock K, Boris M, Bradstreet JJ, Baker SM, Gaylor DW. Am J Med Genet B Neuropsychiatr Genet. 2006 Dec 5;141B(8):947-56.

12. Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. James SJ, Cutler P, Melnyk S, Jernigan S, Janak L, Gaylor DW, Neubrander JA. Am J Clin Nutr. 2004 Dec;80(6):1611-7.

Autism Speaks is Scrubbing Their Ties to Poul Thorsen From Their Web Site

In 2008, Autism Speaks reported on their epidemiology grants on their web site. They let supporters know that they were funding a one million dollar international autism registry with CDC and several international researchers including:

"Poul Thorsen, MD, PhD, University of Aarhus, Denmark and Emory University, USA"

You can find that information on the AS web site here.

or rather you used to be able to find it there. That sentence is now missing from the page.

But that is what the page said on October 21, 2009. Check it out in the Wayback Machine.

Before:

After:

So AS, why are you hiding your affiliation with Thorsen?

And why didn't you do it for the Thorsen research that was funded under NAAR, before the AS merger?

Thorsen (2003)

Exposure to pharmaceuticals in pregnancy and development of autistic disorder ($118,454)

Retrospective analysis of medical records to determine prenatal factors such as exposure to different pharmaceuticals and relationship to autism. While no reports have been published that links different pharmaceuticals to autism, Dr. Thorsen was able to report that different prenatal environmental events, including breech presentation, low APGAR score and gestational age at birth were associated with elevated risk of autism. Other factors, including season of birth, and number of antenatal visits did not elevate risk of autism. Dr. Thorsen is a participant in the Autism Epidemiology Network.

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

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

Anne Dachel makes the case yet again this year:

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

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

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

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

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

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

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

What is there to celebrate?

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

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

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

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

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

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

Anne Dachel
Media editor: Age of Autism

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

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





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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

/End 2008 article

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

Autism Speaks Tries To Change The Conversation That They Have Never Been A Part Of

So to catch up on the week's events, Dr. Oz had a show on autism causation. Alison Singer et. al. spouted the party line that we don't know what causes autism but we know it is not vaccines, and the audience basically told them to go to hell. (Like I keep saying, NOT WORKING) Autism Speaks was invited to participate but refused. And of course they did. They can't withstand direct questioning from the public any more than Kathleen Sibelius or Julie Gerberding or Thomas Insel or any of the others trying to continue to get away with posing as earnest people trying to find the true causes of autism.

Instead, Dr. Geri Dawson (who is paid in the mid six figure range despite the fact that she has not cured any more autism than I have) posted on the AS blog on why they refused to show up.  Because they don't want to talk about vaccines.  She declares that:

It's Time to Change the Conversation

Which I find HILARIOUS as Autism Speaks has NEVER been a part of the vaccine/autism causation conversation!

It is as if I, a straight waspy Maine autism mom, blogged to the transsexual community in San Francisco that they need to change the conversation on whether or not one is born psychologically male or female and what should be done when sexual identity crises arise. I say "they" because this is their conversation, not mine, as I have never entered into this dialog and even had to look up the spelling of the word "transsexual."  (Two 'ss', who knew?)

As someone who has been neck deep in the vaccine causation discussion for more than five years, I can tell you I would have LOVED to have this discussion with them. Or even show up somewhere to hear them have it with anyone on our side of the issue. But other than a few press releases vaguely denying vaccine induced autism and two or three questions that rogue mothers managed to sneak in at random events... natch on the vaccine/autism causation discussion from AS. (Although I do hear that it is hotly debated in the hallways at AS now... so was this blog by Dawson meant for us or was it just a passive aggressive externalized internal memo? Trying to keep the troops from turning the AS lobby into Tahrir Square?)

So... all you boys who want to be girls? I have decided that you can't talk about that any more. Turn in your giant wigs and size 11 heels. And I will go ahead and only blog about ABA (even though we didn't do ABA) and we should just go ahead and take down Age of Autism. Retract their book, and Vaccine Epidemic, and Callous Disregard, and Evidence of Harm. Close up shop at NAA and TACA and SafeMinds and ARI. Oh... and someone call Chicago and tell them Autism One, (which Ed Arranga and Generation Rescue managed to make FREE this year to parents trying to ACTUALLY heal their kids) is cancelled.

Why? Because Dr. Geri says so. We are not allowed to talk about vaccines any more. (My suspicion is that AS's real clients, big corporate donors whose names shall not be spoken and who have a vested interest in keeping a lid on the environmental causes of autism to keep their business a rollin', have put the screws to AS to try to get the peasants to quiet down... but since Dawson has no street cred, well... NOT WORKING.)

But now that I think about it, we better do what she says, because if we don't, she will take away all those imperative family services that they give to our kids... oh wait... we don't get help for our families from them. But they will stop doing all that research that has helped our kids get better... oh... forgot... their research has not led to anything to help our kids health. I know... if we don't do what Geri says, then she will stop letting us walk around town with our friends to raise money for her Park Avenue office space and gala fundraising events! She won't let us let her use our kids stories of hardship to raise money for her to pay for her other fundraising events! Oh the dilemma!

On second thought... we will go ahead and continue having the conversation; from now on we will do it without AS, which means absolutely nothing has changed. Except that AS is saying out loud what they have actually been doing for years. Ignoring the 800lb gorilla in the room.

Autism Speaks, NOT a Charity Recommended by the Better Business Bureau

Came across this today:

BBB Wise Giving Report for
Autism Speaks

BBB Wise Giving Report issued September 2009
BBB Wise Giving Report expires September 2011

Does not meet one or more standards
This charity does not meet one or more of the 20 standards for Charity Accountability.

http://www.facebook.com/group.php?gid=109130859120272

Another Bad Faith Move by Autism Speaks On National Legislation

The Combatting Autism Act of 2006 expires in 2011. Corporate fat cats, autism monopoly, charitable organization, 503c3 Corporation Autism Speaks, has already written a full bill and submitted a bill to Senator Dodd's office.

What's that.... AS went ahead and put in a whole dang bill with out the input of the greater autism community? Shocked to the core am I.

Once again, AS, while claiming to represent the autism universe, tiptoes behind the back of our community to write legislation that will dramatically impact your family and mine. Autism Speaks corporate shark Exec VP Peter Bell (former worldwide marketing manager of the Johnson & Johnson drug Risperdal, you know, that drug that gives our boys breasts) has brought those same wholesome, forthright values of pharma marketing to the world of autism. *

I sent the following request to AS yesterday:

Subject: Request for a copy of your Reauthorization of CAA bill
Date: Sun, 27 Jun 2010 19:00:57 -0400
From: Ginger Taylor
To: Peter Bell , Geri Dawson , Mark Roithmayr


Peter, Mark and Geri,

It is my understanding that Autism Speaks has drafted a CAA reauthorization bill and submitted it to Senator Dodd.

Previously, despite claiming to be a big tent organization, Autism Speaks has used their position to circumvent the larger autism community in order to achieve their own agenda. I see this as yet another bad faith move to bypass autism families to get a new CAA that favors AS and its narrow goals.

Will you release the current copy of the CAA bill that you are working on for Dodd? Will you be inviting other autism orgs like NAA, SafeMinds, Autism Action Network, ARI and TACA to offer input on this bill? Will random autism families or adults with autism be able to collaborate on this, or is the fate of hundreds of thousands of people effected by autism in the hands of three or four people at AS who are just about consolidating their power and protecting their unjustifiably large salaries?

AS is charitable org that raises millions of dollars by claiming to represent the autism community. As such, I believe it is incumbent upon you to be transparent in your CAA dealings and release this draft to the autism community (as it will effect ALL of the autism community). Any refusal to share the bill that AS has already submitted to Dodd should be viewed as highly suspect at best.

If you choose not to release this immediately, then please provide a reason for the back door negotiations being kept secret from those whom you claim to be serving. I plan to write a piece either way on Monday afternoon.

Additionally... please forward me a copy of your 2009 990 as it is not listed on Guidestar and I don't see a copy of it on your web site.

No response.

I can only imagine that it has the very best interests of those with autism in mind, even thought the bill they just pushed through in NY, to the loud opposition of others in the autism community, and to the cheers of the insurance industry, is already hurting our kids. John Gilmore of Autism Action Network made this comment on their recent NY activities:

"In NY Autism Speaks turned a new corner, in that they are now backing legislation that will take away what little health care coverage we have and effectively slam the door shut to access in the future. We have already received a report from a parent in Westchester county who was told by his insurance company that because of the new law (the Governor hasn't even signed it yet) payments for speech and OT will be discontinued. This is exactly what we said would happen."

Does AS work for people with autism, or are they a front for insurance groups and pharma? Did AS actually write the text or were the insurance or pharma lobby party to its creation? Does it include vaccine research? I think we all know the answer to that last question.

I encourage you to call whatever autism group you belong to, large or small, and ask them what the plan is for getting a good bill to the floor.

I would also encourage you to stop giving $$ to Autism Speaks. They are starting to seem to me more like those charities portrayed in the American classic, "Death to Smoochy", rather than one that actually improves the lives of the people whose faces adorn their fund raising posters, and whose difficult stories make them so many millions.

And if you are in NY, you might wanna call the governors office and ask him not to sign AS's anti child, pro-insurance company "autism" bill.

With that I will re run this little ditty that someone put together from their 2008 tax form about where their millions go.



*Update:

I am told that Peter never worked on risperdal, but that he worked on analgesics like tylenol and motrin. Which of course is much bigger problem as Tylenol is believed to be a player in autism causation as it impairs liver function... the liver function that might be needed by a baby who has just been vaccinated with aluminum or mercury containing vaccines to process said chemicals out of the body before they can cause neurological or immune disorders.

Turns out Autism IS associated with GI disorders

... who knew?

And oddest thing of all, this was "discovered" by Autism Speaks and The Autism Treatment Network, which is Kennedy Krieger, which is Johns Hopkins, not exactly friendly factions to biomed really.

So you think that they will pick up the phone and call ARI and apologize for dissing them for a decade or so, and then say sorry to the children who have been suffering while they conferenced and committied and scoffed and vacationed?

http://www.abstracts2view.com/pas/view.php?nu=PAS10L1_1926&terms

[2320.7] GI Symptoms in Autism Spectrum Disorders (ASD): An Autism Treatment Network Study

Kent Williams, George J. Fuchs, Glenn Furuta, Margaret Marcon, Daniel L. Coury, Autism Treatment Network GI Committee. Vanderbilt University, Nashville, TN; University of Arkansas for Medical Sciences, Little Rock, AK; University of Colorado at Denver, Denver, CO; Hospital for Sick Children, Toronto, Canada; Nationwide Children's Hospital, Columbus, OH.

BACKGROUND: The prevalence of GI symptoms in children and adolescents with ASD is uncertain, with studies reporting conflicting results.

OBJECTIVE: To determine the frequency of GI symptoms as reported by parents in a large ASD registry, and to identify factors associated with GI symptoms in children with ASD.

DESIGN/METHODS: Autism Treatment Network Registry enrolled 1420 children, age 2-18 years, with an ADOS-confirmed ASD diagnosis (autism, Asperger disorder, or PDD-NOS) at 15 sites in the US and Canada. Parents completed a GI symptom inventory tailored to the needs of nonverbal children, as well as Child Behavior Checklist (CBCL), Child Sleep Health Questionnaire (CSHQ) and Pediatric Quality of Life (PedsQL) at time of enrollment.

RESULTS: GI symptom data were available for 1185 children. Overall 45% of children were reported to have GI symptoms at time of enrollment. Of GI complaints that occurred within the 3 months prior to enrollment, abdominal pain was most common (59%) followed by constipation (51%), diarrhea (43%), other (40%), nausea (31%) and bloating (26%). Reports of GI symptoms increased with age, ranging from 39% in those under 5 years to 51% in those 7 years and older (p<0.0001). Children ages 1 to 5 years with GI symptoms had higher CBCL t-scores for total problems and for the emotionally reactive, anxious/depressed, somatic complaints, sleep problems, internalizing problems, affective problems, and anxiety problems subscales, all p<0.05. Children ages 6 to 18 years with GI symptoms had higher CBCL t-scores for total problems and for all subscales (p<0.01). Sleep problems occurred more frequently in children with than those without GI symptoms (70% versus 30%, p<0.0001). Children with GI symptoms had lower PedsQL scores (overall score and all five subscales, p<0.01) compared to children without GI problems. Presence of GI problems did not differ by gender, ASD subtype, race, or IQ. CONCLUSIONS: Parents of children with ASD report a high prevalence of GI symptoms in their children. This prevalence increases with age. GI complaints are significantly associated with behavioral abnormalities in all age groups. GI symptoms are also significantly associated with sleep disturbances and decreased health-related quality of life. Further definition is needed on the role and potential impact of treatment of GI disorders on behavior, sleep disturbance, and quality of life in children with ASD.

And don't forget to tune into NBC to see Dr. Nancy apologize and BBC America to see the British Medical Establishment express their profound regret to Wakefield et. al and the families they have sabotaged as their children languished in GI distress that they claimed didn't exist.

Brian Deer must feel really awful right now. I can't imagine his guilt.

Offit Offensive Has Failed, Vaccine-Autism War Continues, Child Vaccine Refusals Increase in U.S.

I was going to write something, but it turns out Harold already wrote it. So go read it there.

AAP, CDC, HHS, Public Health... what is your plan? Is this really it? You really gonna ride this train right of the side of the cliff?

Autism $peaks

Autism Chair Thomas Insel Refuses to Ride in an Elevator With an Autistic Child

"I'm not riding up with them" - Dr. Thomas Insel

On April 17, 2007, Holly Bortfeld attended an autism hearing in the Senate Appropriations Subcommittee run by Senator Tom Harkin. At that hearing Dr. Thomas Insel, Director of the National Institute of Mental Health, now current head of the Interagency Autism Coordinating Committee, was there to testify.

Beforehand, Ms. Bortfeld, was waiting with her 11 year old son Max, who has autism, at an elevator on the way up to the hearing. When the doors opened they got on.  After they did, Thomas Insel and a female companion approached and entered the elevator just before the doors closed. Ms. Bortfeld reports that once they were on the elevator together...

"...Max stimmed. Insel looked at him, looked at me (yes, he had his little name tag on, so he knew that I knew he was) then he hit the open door button and ushered his coworker off. As the doors were closing, he said "I'm not riding up with them", looking at my son."

The head of the National Institutes of Mental Health refused to ride an elevator with a child with mental health issues.

...again for clarity and perspective on this episode...

The chair of the Interagency Autism Coordinating Committee will not share an elevator with a child with autism, on the way into an autism hearing.

This odious behavior is not one of a healer committed to the well being of the disadvantaged or disabled, it is the behavior of a bigot.

It is just one more example of the pattern of astonishing contempt that Insel shows towards the autism community, as he routinely leaves IACC meetings early, dismisses the input of the autism community, and chairs an autism committee with some completely inappropriate appointments, like...

• Alison Singer, who was asked to resign from Autism Speaks because of her behavior on the IACC, but is still considered qualified by Insel to be on the committee, presumably because she now runs an "autism organization" out of her basement that she subsequently founded with vaccine maker Paul Offit (who admits he has never treated a child for autism), and despite the fact that she is widely disliked by both members of the neurodiversity community and the biomedical community.  (Or perhaps because Singer went to college with HHS head Kathleen Sebelius?)
  
• Dr. Yvette Janvier, who is highly offended at the idea that people with autism could possibly have GI dysfunction despite the fact that now even the denialist CDC now tells docs to screen for GI disturbances in children with autism, and who, despite being neither a person with autism nor an autism parent, is holding a seat meant for members of the public
• Dr. Storey Landis who resigned this weekend after passing notes during an IACC meeting disparaging another member who is an autism mom
• And perhaps the strangest appointment of all to the committee, Insel's neighbor, a reportedly pleasant autism parent that does not represent any group, does not do any public advocacy, does not seem comfortable with discussing autism science and doesn't seem to have any qualifications for being on the IACC. What are the odds that one of the most well qualified autism parents to sit on the most powerful government panel on autism just happens to live in the neighborhood of the chair of the IACC?

Add to that the fact that after the IACC voted to add vaccine/autism research to the government's strategic plan for autism, Insel pulled classic, corrupt smoke filled back room shenanigans, schemed to get people to change their votes, and then surprised public members of the committee with a revote, not on the agenda, but known to Alison Singer who had parted with Autism Speaks the night before because they didn't approve of her upcoming vote change, to ditch the vaccine research.

Insel also canceled research on chelation as a treatment for autism with the justification that DMSA chelation was to dangerous to even study, despite the fact that it has been the standard treatment for metal toxicity since the Navy developed it in the late 1950's, and is the treatment of choice for lead poisoning in children.

And why was Insel, the head of the National Institute of MENTAL Health present to testify with CDC chief Thomas Frieden at the H1N1 hearing held by the House Oversight and Government Reform Committee? Flu is not a mental health issue, is it? [Update - My bad... it was Anthony Fauci at the hearing... not Thomas Insel.]

Could it be that vaccines are the Insel family business and Insel's participating in this whole IACC political theater is merely to protect the vaccine program? It is surely is not because he has a heart for those with autism, as he won't dane to be in their presence and it cannot be because he is fascinated with autism itself, as he can't be bothered to sit through the meetings themselves.

Insel cares so little for people with autism that he actually ended a meeting early, preventing the testimony to the IACC of a child with autism who had flown in from California to address the committee. The child actually had to give his speech to an empty room.

Thomas Insel is an embarrassment to NIMH and the IACC is an complete farce under his leadership. I join with Dan Olmsted and call for his resignation from his leadership positions of both organizations, and for him to take his bogus committee appointees with him.

Please contact President Obama and demand the dismissal of Thomas Insel from NIMH and IACC, and put an end to the fraud, corruption and CYA in autism causation. Demand that someone who loves and values those with disabilities, who will legitimately pursue autism treatment and causation, WHO HAS A TRACK RECORD OF BOTH, be put in his place, not another elitist bureaucrat.

End the charade of the IACC, its obstruction of advancement in autism research and its complicity in the growing autism epidemic.

Autism Speaks Hearts Paul Offit

... and Katie Wright, whose son the foundation was created for, is the one spilling the beans.

Time for AS to either change the guard or close their doors.

Anyone up for picketing in front of #2 Park Avenue? Because this is just getting sickening.

A Message to Autism Speaks' Singer and Shih: ENOUGH ALREADY!

Autism Speaks Supresses the Free Speech of People with Autism

Rather than listening to the legitimate criticism that Autism Speaks is being offered from the neurodiversity community (like the fact that people with autism are not allowed to speak at their events, even though their name is "Autism Speaks"), AS instead threatens to sue them.

Even for legal parodies, even for t-shirts that say, "Autism Speaks can go away. I have autism. I can speak for myself."

Pretty poor behavior for the org that refers to itself as Autism's "Big Tent".

(But really, if they don't listen to fellow parents like us who are looking for treatments and supposedly have the same goals as them, are we surprised that they don't listen to adults with autism who oppose "cures"?)

And its weird because, really, the point of all the of the stuff that we are doing to make our kids better is so that they CAN one day advocate for themselves, right?  I mean, I disagree whole heartedly with the idea that finding a "cure" for autism is wrong, and somehow devalues people with autism, but I earnestly pray that my son will be an adult who is healthy and functional enough to process complex abstract ideas like human value and have t-shirts printed up to espouse his thoughts on the matter should he get a hankerin' to do so.

I know this may sound odd, but the fact that there are people with autism out there that can use cogent arguments to tell me that they think that I am jerk is encouraging to me.  It means that it is possible that my son who wouldn't see danger coming if it was wearing a t-shirt that said, "I am danger" on it, might one day not only be able to comprehend and defend himself against concrete threats to his safety, but abstract, theoretical threats to his self image.

It gives me the hope that someday, Chandler could be a sixteen year old that borrows the car and stays out past curfew, yelling "I hate you, you have ruined my life" when he gets grounded and can't go to the foot ball game on Friday, just like most every other teen age boy has done at one time or another.  ... and the idea of loosing an arguement with him, and having to apologize to him, is just to beautiful a thought for me to hope for.

If AS first priority is squelching criticism of their organization by people with autism, there is a much cheaper way to do that.  Stop looking for a cure and don't teach people with autism how to talk.  That way, you save money on both ends, you don't have to spend it on research and speech therapy now, NOR do you have to spend it on lawyers to get them to shut up later!

When reaching your goals for autism means stepping on people with autism, it is time for you to get out of the autism game and just go back to being a corporation that just steps on the regular ol'e consumer.

UPDATE:  So it appears that in the case of the t-shirt, they did not threaten to sue over that specifically, but since they had contacted the tshirt company before about shirts with their name on it, said company decided to nix the one in qestion pre-emptively.

He jumped to the conclusion that AS did it.

But they still bullied a 14 year old over a parody site.

Autism Speaks Undercuts the Children of PA

What Autism Speaks is doing in PA is just another example of how they use their considerable resources to bring about the PERCEPTION that our kids are being helped, rather than giving them the ACTUAL help they need.

Families who have worked on the insurance bill in PA for years are now being undercut by Autism Speaks, because they want to use the PA legislation, not in the best interests of the children of PA, but to build a national movement to get autism covered in all the states.

Don't get me wrong... I want that national movement to happen, but we DO NOT compromise the treatment and care of the children of Pennsylvania to do it.

It is just another example of crappy 'greater good' logic that takes from one child to give to another. Each child needs what they need, an it is our job as a society to give it to them.

Autism Speaks... stop using children THAT ARE NOT YOURS to advance your agenda that will not be best for those specific children!

Friends:

There can be no question in the minds of Pennsylvanians with autism and their families that Speaker Dennis O'Brien has unfailingly been our community's champion in the Pennsylvania General Assembly for decades.

Dennis has seized every opportunity to advance the best interests of our community, sometimes at political peril to himself, but always with the unwavering goal of pushing forward the rights of the community that he loves so much.

Dennis O'Brien sponsored the autism insurance bill now before the General Assembly, the bill that aimed to require health insurers to step up and cover diagnosis and treatment for persons with autism. At every turn, Dennis has worked with families, with advocates, with
policy makers, and with those aligned with the insurance industry to craft and push forward a bill that would truly benefit the Pennsylvania autism community.

Autism Speaks, through its Government Affairs Department (who are not Pennsylvanians and who had no previous experience with Pennsylvania families, the service terrain, or with its legislative process) came to Pennsylvania with the promise that they would help Speaker O'Brien in his efforts to enact a sound autism insurance bill that would, above all, help our community.

In the last several days, it has become apparent that, through the efforts of the health-insurance lobby and its allies in the General Assembly, what had been an important and helpful bill, that won the overwhelming approval of a panel of national experts, has been mutated into something that lacks the most important safeguards for
Pennsylvania families and that could, if enacted in its present form, actually harm the very community Dennis O'Brien intended to help.

Dennis has made clear that, no matter how fervently he believes in legislation to force health insurers to do what they should have done years ago, he will not support his own bill if the changes forced upon it by the insurance industry and its allies actually undermine the purposes of the bill and pose too great a risk of harming the
community. If that is his decision our community as a whole must accept that he has done so carefully, after excruciating deliberation, and with sound counsel, and only because he believes the current version of the bill would likely hurt the people he has spent his entire career helping. Dennis has earned our faith in him.

I have learned recently that Autism Speaks' Government Affairs team are now suggesting that they want to push the bill forward regardless of what Speaker O'Brien believes and regardless of the perils it poses to our Pennsylvania families. Recently, a leader of Autism Speaks indicated his desire to cause the "sense of a wave" in the states toward a larger National agenda. I responded to him that, in
Pennsylvania, we need to have more than a "sense" of a wave - an "illusion" of a wave - but a REAL wave that meaningfully benefits Pennsylvania's families. Many of us with considerable experience navigating the Pennsylvania service systems believe that the bill as reported out of Senator White's Committee is an "illusion" of a mandate. In other words, an insurance bill is being prepared for passage that lacks any concrete assurance that it will actually help Pennsylvanians with autism and their families. We are the people who will live with what happens in the General Assembly in the next few days. We must be the voice the Pennsylvania legislature hears and we must be the people who stand behind Speaker O'Brien during the next several days.

In deciding which of the competing positions to support, our community must consider our history. Dennis has been our standard bearer for decades. He has been in the trenches with us on every important issue we have faced. We know this man. We know his integrity and we know his heart. He is one of our own. On the other hand, the Autism Speaks' Government Affairs team are tourists in our community, and unfamiliar with the lay of Pennsylvania's service terrain. They have their own agenda, and it apparently focuses more on their national goals than on what actually happens on the ground here in Pennsylvania. If Autism Speaks tells you to ignore Dennis's position or to support the stripped-down version of HB 1150, ask yourself two simple questions: (1) Where were they in the hard times during which Dennis fought for us against MA caps and premiums and for an adult autism waiver, and (2) where will they be months or years from now if this fatally flawed bill they are endorsing starts eliminating services our children so desperately need?

In the next few hours or days, our Speaker will tell us what he believes must be done with respect to this bill – this bill that he sponsored and championed and which many of us invested many, many hours in advocating. Listen to him. Follow his lead. Do not be distracted by those who share neither our history nor our future. Our Speaker Speaks for me and I ask you all to let our Speaker speak for us as well.

Jim Bouder

It passed:

Proponents become opponents on autism bill
Intelligencer Journal
Published: Jun 30, 2008
00:06 EST
By DAVE PIDGEON, Bird's-Eye View

Private insurance companies will continue denying coverage of autism treatments under a bill passed 49-1 by the state Senate on Sunday, opponents said prior to the vote.
The opponents originally stood as proponents of a mandate forcing private coverage, but the final version of the bill was so amended, they said, the proposed mandate would actually hurt families dealing with autism.

The original version — authored by state House Speaker Dennis O'Brien, who slammed the final Senate revisions prior to its passage Sunday — would have forced insurance
companies to cover autism treatments up to $36,000, with the state's Medical Assistance program helping families with any costs above the cap.

A report commissioned by the Pennsylvania Health Care Cost Containment Council said
last week that the original mandate would end up costing all insurance customers about $1 per month.

The Senate Banking & Insurance Committee, however, amended the bill last week.

According to O'Brien and others who once supported the bill, the revisions passed Sunday by the Senate allow insurance companies to decide for themselves what services to cover.

While the bill sets up a system to challenge any denial, disappointed former supporters said the bill now makes affording vital but expensive treatments prohibitive.

"When insurers deny coverage, families will have no alternative but to reach into their own pockets to pay for the medical treatment," Estelle Richman, a one-time supporter and secretary of the Department of Public Welfare, wrote in a letter Sunday to Republican Sen. Don White, a former insurance broker and chairman of the Banking & Insurance Committee. "This means they will be worse off ... ."

O'Brien, who has placed much of his legacy as a legislator into getting this mandate
passed, called the bill an "illusion" of insurance coverage for autistic children.

"That's because the current version gives the insurance companies a back-door way to
continue denying coverage for autism services," he wrote in a statement. "Insurance
companies will continue to second-guess these kids' doctors and refuse to pay for autism services. The Senate-amended version gives them the power to unilaterally deny that coverage ... ."

Also rejecting the new bill were AutismLink and the Autism Center of Pittsburgh, but the national organization Autism Speaks announced its support of the current version as did Sen. Jane Orie, co-chair of the Autism Caucus.

"The bill now moving forward, if signed into law, would be the strongest autism insurance mandate yet achieved in the nation," said Elizabeth Emken, vice president of government relations for Autism Speaks.

Supporters also trumpet other amendments to the bill, including government oversight of a pending merger of two large Pennsylvania insurance companies — Highmark and
Independence Blue Cross — and insurance coverage of colorectal cancer screenings.

Katie Wright Takes On Autism Speaks

Katie Wright has officially taken to task the organization that was inspired by her son.

Her message to Autism Speaks is basically the same message that autism moms have been offering to the 'big guys' who say they are looking for a cure for autism for years now:

Put up or shut up.

New Study Implicates Mercury In The Development Of Autism

The American Journal of Biochemistry and Biotechnology has published this study out of Rutgers and UMDNJ that exposed mercury to animals and found "neurobehavioral alterations" such as impaired social interaction, cognition and motor behavior. They also found that they improved when given vitamin E, suggesting that oxidative stress is at work in this process.

This is no surprise to any of us who have been treating our autistic kids for mercury toxicity and oxidative stress for years, but the big surprise in this study is in the credits.

The shocker is that this study is brought to you by Autism Speaks.

IMHO Autism Speaks has finally said something worth saying.

So... will we see this article in the press? Will the AAP recognize it and start looking at Vit. E as a helper for their patients with autism? Will CDC start taking another look at vaccines? Will Autism Speaks start coming around now that their own studies are implicating mercury as a factor in the development of autism?

Or will they all continue to proffer the lie that there is no convincing evidence linking vaccines to autism, while ignoring all the studies that are piling up on the hard drives of parents across the country?

American Journal of Biochemistry and Biotechnology 4 (2): 218-225, 2008
ISSN 1553-3468
© 2008 Science Publications

Corresponding Author: George C. Wagner, Psychology, Busch Campus, Rutgers University, New Brunswick, NJ 08854
Tel: 732-445-4660 Fax: 732-445-2263


Evidence of Oxidative Stress in Autism Derived from Animal Models
1Xue Ming, 2Michelle A. Cheh and 2Carrie L. Yochum,
3Alycia K. Halladay and 2George C. Wagner
1Pediatric Neuroscience, UMDNJ, Newark, NJ
2Psychology, Rutgers University, New Brunswick, NJ
3Autism Speaks, Princeton, NJ

Abstract: Autism is a pervasive neurodevelopmental disorder that leads to deficits in social interaction, communication and restricted, repetitive motor movements. Autism is a highly heritable disorder, however, there is mounting evidence to suggest that toxicant-induced oxidative stress may play a role. The focus of this article will be to review our animal model of autism and discuss our evidence that oxidative stress may be a common underlying mechanism of neurodevelopmental damage. We have shown that mice exposed to either methylmercury (MeHg) or valproic acid (VPA) in early postnatal life display aberrant social, cognitive and motor behavior. Interestingly, early exposure to both compounds has been clinically implicated in the development of autism. We recently found that Trolox, a water-soluble vitamin E derivative, is capable of attenuating a number of neurobehavioral alterations observed in mice postnatally exposed to MeHg. In addition, a number of other investigators have shown that oxidative stress plays a role in neural injury following MeHg exposure both in vitro and in vivo. New data presented here will show that VPA-induced neurobehavioral deficits are attenuated by vitamin E as well and that the level of glial fibrillary acidic protein (GFAP), a marker of astrocytic neural injury, is altered following VPA exposure. Collectively, these data indicate that vitamin E and its derivative are capable of protecting against neurobehavioral deficits induced by both MeHg and VPA. This antioxidant protection suggests that oxidative stress may be a common mechanism of injury leading to aberrant behavior in both our animal model as well as in the human disease state.

It Just Keeps Getting More Absurd

So apparently the woman hired by NIMH to coordinate the attack on the autism epidemic, may not believe that there is an autism epidemic.

The new head of the Interagency Autism Coordinating Committee(IACC)is Joyce Chung, who is the wife of Roy Grinker, who wrote a book and tours the nation, claiming there is no autism epidemic.

I feel like I am taking crazy pills.

So are the bajillions of dollars in CAA money now going to research that proves Grinker's head in the sand theory is true, rather than actually looking for the causes and cures of autism?

A year or so before I became a mom, me and 4 of my friends started a prayer group/bible study type thing. Two of the five of us now have autistic sons. Another has a daughter with severe autoimmune disorder.

When I was in Jr. High my best friends were identical twins that lived next door, two of the three of us have autistic sons. The third has a son with a severe autoimmune disorder.

I am wondering what the stats would be for my groups of girlfriends gone by if I tried to get back in touch with all of them.

But Autism Speaks and now NIMH are propping up proponents of the idea that there is no epidemic.

All I can think of is sarcastic comments to make, so I will just stop here and let Wade, the voice of reason, and JB, the voice of pissed off parents everywhere, take over.

Does Autism Speaks Support Autism Eugenics?

Whose Planet is it Anyway has called our attention to some truly upsetting information about Autism Speaks associations.

I have repeatedly mentioned that if AS is successful in their autism gene search before treatment options are fully developed, that the "Cure" for autism will become the same as the "Cure" for Downs Syndrome. Abortion.

I have always assumed that AS did not actually intend this to be the outcome from the beginning, but I may have been naive.

Autism Speaks' Eugenic Agenda

It's not really news that the ultimate goal of Autism Speaks is to wipe out the entire autistic population through prenatal testing and eugenic abortion. After all, one of their leading researchers, Dr. Joseph Buxbaum of the Autism Genome Project, frankly admitted as much in an interview almost three years ago, before NAAR merged into Autism Speaks.

But for the most part, they've managed to put up a somewhat plausible pretense of being a mainstream charity that just wants to prevent suffering, and so forth. Most of the material on their website is carefully designed to keep the public unaware of their close ideological affinity with the white supremacist agenda of creating a master race through eugenics. A casual reader might not notice a page featuring the views of Dr. James Watson, with whom Bob and Suzanne Wright had a friendly chat regarding autism genetic research at Cold Spring Harbor Laboratory:


autismspeaks.org/inthenews/wrights_cold_spring_harbor.php


Watson, a molecular biologist, is famous for his genetic research discoveries. He is equally infamous for his long history of advocating white supremacy and eugenic extermination of people with neurological differences, which he characterizes as curing stupidity.

On October 18th, Watson was suspended from his position as the Chancellor of Cold Spring Harbor Laboratory after making racist comments during an interview with a British newspaper that included these remarks about blacks: "all our social policies are based on the fact that their intelligence is the same as ours – whereas all the testing says not really" and "people who have to deal with black employees find this not true."

It's frankly impossible that Autism Speaks, in making the decision to feature their association with Watson on their website, could have been unaware of his bigoted extremist agenda. His racist attitudes have been well known for many years.

Local Chapter of Autism Speaks Splits From Autism Speaks

Apparently the good folks of Burlington, VT have wised up to the fact that Autism Speaks sucks the money out of local communities and does not give back.

Local autism group splits off from national nonprofit
October 21, 2007
By LISA D. CONNELL

BURLINGTON – The state chapter of a national autism group has spun off to form a separate nonprofit.

The Burlington-based Autism Support Daily was formed by a group of advocates who split off from the national Autism Speaks last year.

The schism was over money.

Now there will be two autism fundraising walks in Vermont. Autism Support Daily held its event on Sept. 29; Autism Speaks, which had its own walk scheduled for Sept. 30 postponed its fund-raiser because of the timing conflict. It plans to hold a similar event in early summer.

That's because the Burlington group questions how locally raised funds were used by the national organization. Autism Support Daily believes money raised in Vermont should remain in Vermont.

The local organization also questions how much of that money should be devoted to medical research, and how much should be made available to help local families with autistic children cope with living and medical expenses.

The chance that a child, particularly a boy, will develop autism is now about one in 160, records note. NIH officials define autism as a complex brain disorder.

"Autism involves communication and social difficulties, as well as repetitive behavior or narrow interests. Autism is often grouped with similar disorders, all of which may be referred collectively as autism spectrum disorders. The underlying causes of ASD are unclear. Currently there is no cure for the disorders and treatments are limited," an online report states.

New York-based Autism Speaks in its first Vermont walk last year raised about $50,000, according to Erica Jacobson, an event planner and fund raiser for one of the New England Autism Speaks chapters. Jacobson, who earned a bachelor's degree in sociology from Northeastern University, has spent her career working for nonprofit groups.

She is relatively new to the national group's staff. She said she walked alongside Autism Support Daily members last year. One of Jacobson's tasks has been to rebuild staff at the New England regional office. Jacobson said that she is completely supportive of Burlington-based Autism Support Daily.

"As a parent, you want what's best for your child," she said.

For members of Autism Support Daily, that means giving out all of the money raised for an awareness walk in Vermont to local families in need. The group's Web site, www.autismsupportdaily.com, gave its first financial award at the close of December 2006.

The first "wish it could be more" grant totaled $1,350. Three additional grant awards were given out for $10,906, $2,600 and $2574, totaling $16,080.

According to the group's Web site, funds are given "to families of children and young adults with autism to help them offset the huge expenses they incur on a daily basis in order to get necessities, prescriptions, supplements, and many other items that place a huge financial burden on families."

The names of the 10 leaders of Autism Support Daily, including Angela Timpone and an honorary member, comprise the group's executive list. The all-volunteer organization, recently received its 501(C) 3 nonprofit charitable status, said Timpone.

That's a major difference between Autism Speaks and Autism Support Daily, she said. There is no payroll for any of the staff of the Vermont group, Timpone said.

"Think of this as a grassroots effort," said Timpone. "I think we're completely different."

Autism Speaks Inc., which was formed in February 2005, is the largest national autism group. Its focus, according to its Web site, is on medical research. Its total public support revenue for 2006 was $33.3 million. Its mission is to "aggressively fund global biomedical research into the causes prevention, treatments and cure for autism," according to the Web site, autismspeaks.org. Autism Speaks has 26 board members, plus 20 upper management employees at its offices based in Manhattan in addition to employees working in states across the country, according to its 990 form filed with the IRS in 2006.

Seventy-five percent of the money raised during a state walk goes toward funding research, research dollars overseen by the national group, Jacobson said. The other 25 percent goes toward running the organization, she said.

"It's not a competition. We're all here for the same cause," said Jacobson. "We're here for research and we're here for awareness."

Timpone agrees that more research is needed. "Why is this? We're in the midst of an epidemic and more research does need to be done but at the same time we need the organizations to help support the family who is here now with autism."

"We are not in any way saying we don't support Autism Speaks," said Timpone during a telephone interview. "There needs to be an added component to that. There's families in Vermont that really need help."

Jacobson said she received an e-mail from the local group, indicating it would go its own way. If she had known earlier on of the Vermont group's concerns about where the money raised should be directed, she would have made an effort to deal with Timpone's concerns, said Jacobson.

"We are also dedicated to helping families," said Jacobson. Whether a parent or adult supports the goals Autism Support Daily or Autism Speaks, there is commonality among the two groups, she says. "Because at the end of the day, it's just people supporting autism research and awareness, whether they're directly affected or not," said Jacobson.

Looks Like Autism Speaks is Faking Us Out Again

Autism Speaks, who we in the biomed community have been praising in the last few weeks for beginning to put money into researching the treatments that are actually helping our kids, might just be doing it for show.

The Rescue Post is reporting that rumors point to Eric London of NAAR being put in charge of the biomed research at AS. This would turn the program into an instant joke.

If this happens, we can all just close the door on AS and move on with our lives.

Read the Post article. And the rest of them while you are at it. Blogging will continue to be light here for a while. But they are consistently on the ball.

Autism Speaks Announces Plans to Fund "Complementary and Alternative Medicine"

Earlier this month, Autism Speaks began lobbying in PA for health insurance coverage.

They they opposed AB 16 in California that would have expanded the mandatory vaccine schedule in that state.

Last week JB Handley (no fan of AS) personally and publicly thanked them for supporting the Mercury Free Vaccines Act of 2007.

And today this:

Autism Speaks Seeking Requests for Applications for New Treatment Grants
On July 27, 2007, Autism Speaks called for research proposals targeting three broad treatment approaches for autism spectrum disorders. The "Pharmacological Treatment for Autism Spectrum Disorders" RFA focuses on developing robust pilot data that evaluate the safety and efficacy of candidate pharmaceutical agents that could lead to larger clinical trials. Similar applications are sought for the "Special Interventions in Autism Spectrum Disorders" RFA, but instead of pharmaceutical agents, the focus is on behavioral and non-behavioral interventions such as educational, physiological, and technological treatments. Given the frequent use of non-traditional interventions within the autism community, the "Complementary and Alternative Medicine in Treating Autism Spectrum Disorders" RFA aims to provide preliminary but high quality data to help evaluate the safety and efficacy of some of these approaches and to identify promising protocols that warrant further investigation and development.

To assist researchers in developing high quality proposals for the Complementary and Alternative Medicine grants, Autism Speaks will hold information sessions for invited proposals where interested investigators can discuss their applications and the review process, as well as topics relevant to the preparation and submission of their applications, such as common challenges in study design.

“We are pleased to expand our treatment portfolio to include a variety of grant mechanisms that will advance our understanding of how to treat autism,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Autism is clearly treatable but we need to understand which interventions are safe and effective and which children will benefit from them. Moreover, it's important to address both the biomedical and behavioral/educational aspects of the disorder to achieve the best outcome for those affected by autism.”

Read more about the Pharmacological Treatment for Autism Spectrum Disorders RFA (PDF), the Special Interventions in Autism Spectrum Disorders RFA (PDF) and the Complementary and Alternative Medicine in Treating Autism Spectrum Disorders RFA (PDF).

(Of course I am not thrilled with researching the drug route, but the cynic in me thinks that they had to do that too in order to keep the pharma money flowing.)

The pdf begins this way:

Although medical care in the United States is increasingly driven by evidence based practice, societal pressure for tolerance and incorporation of complementary alternative forms of health care is significant. Many children (estimates vary from 50% to 75%) with autism spectrum disorders are treated with some form of complementary alternative intervention, and approximately 1/3 of these are being so treated at the time of diagnostic evaluation.

They begin their statement with the admission that most parents are treating autism with biomed and that the "pressure" they are bringing to bear is "significant".

Congratulations parents.

And Congratulations Autism Speaks.

This will be the best money you have ever spent. If you spend it right.

Of course the cynical optimist in me also wants to wait and see how the grants are distributed. I need to see the words, chelation, HBOT and Lymphoid Nodular Hyperplasia as well as the names of a few docs and researchers that the biomed community has come to know and trust, before I am going to sing love songs to Autism Speaks. But if they are doing this in earnest and actually get results, I will sing them love songs.

(However, if they give Eric Fombonne money to do a blood mercury study, I will be out in front of their building with a bull horn. But let's just assume that they are not pulling any shenanigans with this and just enjoy the moment.)

I think that it would be great if our trusted DAN! medical professionals could keep us parents abreast of their applications to this program. I would love to know who is applying for what and who is getting funded or turned down.

But as to not seem to be taking this to glibly, I want to thank Autism Speaks, because I am starting to believe that they are listening to us the way that they say that they would.

As an update to the Autism Speaks letters, I have not sent them in yet. I have been away from autism activism a good deal this month because I have been spending so much time on my boy's health. (We are finishing up a round of IV chelation (his first IV) on him and the results have been really exciting for us, but I will write about the whole thing in a week or so when he is done.) So if anyone still wants to include their letter, send it along.

The tide has turned.

How great would it be if a year from now if all I had to write about was plummeting autism rates, new treatment interventions that are covered by insurance and recovery stories.

How great would it be if this blog became irrelevant.