Old Promises Never Kept at Autism Speaks
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Why the Autism Speaks Scientific Advisory Committee Needs to Resign

Cosmic puppets By Katie Wright

The grants AS’ Scientific Advisory Committee have chosen to fund are alienating the community of families. Parents see the redundancy and waste in so many over financed genetic and behavioral projects at the expense of meaningful treatment, biomedical interventions and environmental causation research. Over and over and over again, when board members had the opportunity to fund an innovative researcher, someone outside the box, someone studying critical environmental factors, someone proposing biomedical treatments, they have chosen the same names and the same tired projects. This tiny review board is jeopardizing Autism Speaks’ relationship with the community of families, who have a right to expect better.

First let’s look at the scientific grants. $450,000 to studying Skank 3- genetics. $450,000 to study social processing. $450,000 to study Fragile X mutant mice- genes. $265,000 to study Fragile X genetic links. $449,000 to study early identification in infants- the 10th such AS study. $450,000 to do a study on the outcome of ASD adults in order to identify their needs (good but ask the parents!) as well as a study on the effects of loss of sleep.

All these grants are modeled on the paradigm “autism is genetic” and this committee’s belief that dozens of early identification studies are an appropriate substitute for research helping children living today with autism. Social processing, visual processing, face processing are dated over researched tools for studying autism as a wholly heritable, genetic and behaviorally mediated disorder. There is nothing innovative here. A number of GI studies were rejected. An important biomedical treatment study for children with regressive autism was rejected as well as meaningful and under financed environmental research. No research on adjuvants, autoimmune interventions, severe food allergies or the urgent and immediate needs of ASD children and adults with severe chronic illnesses.

The study on the effects of loss of sleep isn’t bad, it just isn’t great. Don’t we already know (or better yet- live with) sleep deprived children and see everyday how it hinders their academic progress? Rather than describe what we already now, why not invest in research that would address the biological causes of wakefulness (often pain) and research cutting edge interventions?

The scientific advisory board is betting the house that millions of dollars invested into Fragile X, Retts and Tuberous Sclerosis will somehow, some way, some day benefit the other 90% of ASD children without these defining chromosomal defects. Reasonable people can agree to disagree on this research, but by any stretch of the imagination the sheer amount of Fx, Retts and TB grants is excessive. How could they fail to realize that?

Your kid is in unbearable gut pain? Tough luck. Your child regressed after multiple vaccines? Too bad. Your child is chronically sick and there are virtually no doctors or interventions available? Sorry. You are terrified to vaccinate your second child because you don’t know if the vaccine schedule is safe? Sorry the Scientific Advisory Committee can’t help you.


Now for the Treatment grants. $200,000 to teach parents pivotal response training. That is a good thing for those parents. $300,000 to study a medication for anxiety disorders. I really hope this is a worthy investment but the “search for the drug” theme that dominates the “let’s find the biological cause, not only treat the symptoms” concerns me. $200,000 treatment for Tuberous Sclerosis. $200,000 for Retts Syndrome Pharmacological research. Where does this end? $300,000 to Dr. Nancy Minshew (that’s right, Dr. Minshew) to study neurological/ cognitive therapy for high functioning young adults and a $157,000 computerized feedback program to facilitate speech and computer software for real time visual feedback.
Is it just me, or are the treatment grants practically identical to the science grants? Treatment interventions for Retts Syndrome, treatment interventions for Tuberous Sclerosis. So much redundancy! $157,000 for computerized feedback- the ultimate “Big Man, Big Machine” research. For Pete’s sake isn’t there a program at CalTech that would do this for free?

$300,000 to Dr. Nancy Minshew. I doubt any members of the hermetically sealed SAB are even aware of this researcher’s reputation. Minshew is infamous for her brusque dismissal of parental concerns and her vociferous defense of Paul Offit and the CDC. Even worse her study is not well designed and should have been a pilot program before awarding her a massive $300,000.

One of the biggest problems with the SAC is their tendency to fund the same researchers and the same projects over and over and over again, while rejecting innovators. I would bet Dr. Catherine Lord has received 5 grants thus far. She is only rivaled by Dr. Rebecca Landa, of Kennedy Kreiger. Both do extensive early intervention research. Both view autism as a behavioral disorder. Dr. Lord also maintains a busy schedule voluntarily testifying against our families in vaccine court. Lord has been funded to study underserved populations, a laudable goal, but she is conducting a study a measurement study of differing behavioral interventions. Don’t our underserved families deserve a researcher who has an appreciation and understanding of autism as a total body disease that often cannot be addressed by ABA alone? Underserved families are far more likely to live in polluted areas, raising the probability of chronic illness and the importance of studying environmental triggers and appropriate medical interventions.

Although it is not a top environmental science priority for families, the Vitamin D study does sound interesting. I hope it yields useful information. AS does not control the CHARGE study or the EARLI studies. The children to be studied by CHARGE have yet to be born! We are on our own when it comes to getting meaningful environmental science research done.

The SAC needs to be re-configured with parents, clinicians, immunologists and environmental scientists who are a part of the autism community and get it.  The current review panel lacks a sense of urgency as well as scientists who have the courage to fund real environmental research.

Dr. Coyle is a psychiatrist Emeritus at Harvard, president of the Neuropsyhopharmacological Association. I’m sorry I do not see his relevancy and haven’t we all had enough psychiatry research in autism research to last a lifetime? Dr. Daniel Geswind is a professor of Neurology, Psychiatry, and Genetics. Dr. Geswind is nice guy, frequently on PBS programs speaking of ASD as a disorder that is 90% genetic and the need for MORE genetic research. Dr. Gary Goldstein is a neurologist and president of Kennedy Krieger, probably the largest single recipient of AS grants. When Goldstein was the chief science officer he rejected every GI grant, every regression grant and every biomedical treatment grant. Now Dr. Geri Dawson is AS’ chief scientific officer. Dawson is renowned for her work on early diagnosis and behavioral interventions.  However, Dawson’s scientific advisory board still has NO experts in environmental science, no biomedical experts, no parents of severely affected children and no innovators.

So the final word on all AS grants are decided by a psychologist, a psychiatrist/ geneticist, a neurologist, an epidemiologist, a psychologist and one clinician. Where is the parent community? Not one of these individuals has a severely affected child or a child who regressed, or a child with chronic illnesses or a child who experienced severe adverse vaccine reactions. I doubt that some of these members have spent an hour with an ASD child w/ incessant diarrhea, fevers and immune diseases.

It is time to place parents and a new generation of scientists looking to the future, not the past, in those seats.

Katie Wright is a Contributing Editor for Age of Autism.

Comments

bob damelio

http://www.autismspeaks.org/science/science_news/pilot_trailblazer_rfas.php

Kerbob1

I got awareness...

http://www.youtube.com/user/kerbob1#p/u/4/aSiRfBQTS4g

Media Scholar

Read a chemistry text book.

Better yet, read this.

http://xrl.in/578n

michael framson

Katie, you're the Ariana Huffington of AoA. I can't imagine anyone so close to this epidemic, as your parents, are not in pain, constant pain at reading the truths embedded in your words.

Sometimes I buy into the notion that things happen for a reason. Its often the only thing left when 1984 seems to be emerging all around me. You know the ones, lies that become truths.

For the sake of so many, many children, their parents, and whole families,.... desperate families, I hope your parents will connect the dots that you so well articulate.

It would be a shame to waste all the painful truths you, Christian, and your parents have learned.

....AUTISM.....GASTROINTESTINAL....IMMUNE....MITOCHONDRIAL....ENVIRONMENTAL TOXINS....VACCINATIONS.....PRENATAL TOXINS....VULNERABLE CHILDREN.......genetics

Garbo

Pardon my crude analogy, but there's that old saying in politics that its better to have the malcontents and apostates inside the tent pissing out than outside the tent pissing in. Katie is asking us to stay inside the tent. That unity thing would be more workable if it weren't for the fact that the tent is on fire and all the AS leadership wants to do is tell us to cross our legs while they fund studies of smoke. If they want people to stay in the tent, then they'd better stop undercutting our message at every turn and start pointing their "fire hoses" in the right places. Nobody wants to stay in a tent where they're getting pissed on.

mary

After reading cherry's comment I almost threw up. What AS is part of is so evil. It's almost like we are living Kissinger's Memo 200. Hey, that's right. Kissinger works in the Obama administration.

The science museum in my area has an entire section dedicated to overpopulation and one child policy section. What a sick world!!

Cherry Sperlin Misra

Dear Friends, While many of you think that we should not alienate Autism Speaks... How much longer are we to go on with that approach? While you're waiting sweetly for them to change their approach, let me tell you, their doctrine is being quietly spread by their missionaries.
I recently saw this first hand at a well funded, well attended workshop in which Geri Dawson( and many otherAmericans )got to fly in from the US and be a main speaker. Now this workshop was apparently paid for by some "Indo-American " group- which may just be your tax dollars at work. On the first page of their glossy pamphlet was the introductory letter by an Indian educationist, Mrs. Chona, Interestingly Mrs. Chona, who probably does not know a great deal about autism and even less about the science of autism, states twice that autism is "highly genetic". Now, I ask you, Who told her to write that?
This quite impressive workshop, held at one of our best Delhi venues, had young doctors and special educators from all around India. Most of the attendees were very young and no doubt came away with the impression that the speakers at the workshop knew absolutely everything there is to know about autism. In reality, all they got was the EARLY DIAGNOSIS /EARLY INTERVENTION catechism. I'd be willing to bet that the word "environment" was never uttered.
I also took note of how quickly I was thrown out when I tried to distribute my own literature. But that was OK because most of the attendees had to rush past me to get to the toilet;I soon gave out my literature and ran short , but to be honest, most of the attendees were so young ;Its doubtful that I had much impact.
So I ask you now : If Autism Speaks is doing this around the world, are you not dealing with a wolf in sheep's clothing?
A wolf who either does not know or does not want to know that Indian mothers are injected with high mercury tetanus toxoids several times during pregnancy and little babies can be given up to 62mcg ethylmercury at a time during a "well baby visit" and may get up to 9 mercury doses by age three and a half months?
And this year, even our Indian media seems to have tired of autism. World Autism Day didnt seem to get much coverage , despite the rise in autism post year 2000.

Ivonne Jiménez

Es tan sencillo como dejar de aportar dinero o ayuda de cualquier índole a una organización que no responde a los intereses de la mayoría de la comunidad afectada por el autismo. Si para usted está claro (como lo está para mi familia), porque lo constató con su experiencia, que las vacunas son una de las causas del autismo y que el enfoque biomédico es altamente efectivo en el tratameinto de los síntomas del autismo, usted debe boicotear el desenvolvimiento de una organización que, al no financiar estudios que se orienten en esta dirección, insiste en negar lo que para usted es, repito, experiencia de vida. Ya tenemos bastante con el enfoque oficial, con la prensa y los legisladores parcializados. Ya hay bastante gente ahí afuera manipulando la "verdad" en base a intereses y pasiones que no tienen nada que ver con el dolor real de un ser humano condenado a la autoalienación (profundamente autistas)y nosotros, su familia, que los amamos tanto. Yo quiero pragamatismo, no supuestos científicos ¿Desde cuándo la ciencia no se basa en evidencia? Si no cuentan dos más dos no les va a dar cuatro ¿Quién va a "validar" nuestra experiencia para ayudar a los afectados por el autismo? No los investigadores promovidos por Autism Speak.
Yo propongo boicotear su ineficiente gestión retirándoles nuestro apoyo y cortándoles el dinero que llega de nosotros.
Gracias Katie Wright

AL

@Elucidatus - LOL

I have a thing for people who claim to be something I think they're not. Especially when good people fall for it. So far I just see AOA and Taca(Lisa) supporting her here, but I know these people are much smarter than I am about these things so I'll let that alone. There must be a reason for it I don't understand, and probably never will.

What truly bothers me is the parents supporting her.(Katie) What infuriates me even more are the parents who STILL support Autism Speaks as if they are the ONLY organization out there.

I've been doing a lot of research into autism organizations lately and every time I come back to one. The National Autism Association. I have yet to understand WHY this organization doesn't get more support. Yes, Autism Speaks is "bigger". So what? They will ALWAYS be the biggest if folks continue to support them.

To be clear about Autism Speaks. They spend the bulk of their funds on research that nobody in my circle agrees with. That cuts them down to size real quick. Then you take out their millions in expenses and salaries.

Autism Speaks is basically a 4 million dollar a year organization when it comes to the one thing they do right, awareness. The rest is the sweat of parents and volunteers.

A few walks, a useless 100 day kit, and a few colored bulbs do not an autism organization make.

Enough patting people on the back for "effort". This isn't kindergarten anymore. There are real things that need to be, and CAN BE DONE. If you're not doing them, or are not willing to lead others to do them, then kindly sit your blue ass down (Autism Speaks) and let an organization willing to drive take the lead.

I say that should be the NAA. Their website isn't as pretty as Autism Speaks. They don't spend thousands on software from Blackbaud to run their events. They don't have the power to change the lights on buildings. They don't have a walk in every major city.

What they do have is an admirably history, the right mission, great money management, and a whole lot more "heart". "Heart" is something Autism Speaks NEVER had, probably because THAT is not something that money can buy.

Yet, people would rather try to get a leopard to change its spots instead. Newsflash people. You can't get an organization that is basically RUN BY DOCTORS to spend money on something that the medical community as a whole disagrees with. Mainstream doctors at this level are nothing more than shills and pimps for the pharmaceutical companies. Geri Dawson and the rest of the Autism Creeps prove that to me with almost every communication that oozes from their high priced Park Avenue halls. The Wrights? The Wrights are a bad joke. Soulless people who would trade all of society for their own personal wealth. They are not going to do ANYTHING that might jeopardize their quality of life, period.

DON'T be a victim of your own optimism. Step back, and look at this objectively. Things are the way they are at Autism Speaks, and even though you might get some token gestures, they are not about to truly change.

bensmyson

Katie your parents are wonderful. So many grandparents fail to even recognize not only the disorder/injury they fail to see the suffering connected. For two years now Ive asked my parents to speak to their church about setting up a program to educate parents about autism. Simple. Have they done it? No. Our children's grandparents have influence and few, very few have done anything remotely comparable to what your family has done.

Your devotion to your son is testament to the love that resides within your family. I dont doubt for a second that they are doing all that they can and making great sacrifices on all of our sons and daughters' behalf.

Im no fan of Autism Speaks but I am a huge fan of both of your parents.

Henderson

I'm with Donna K. 100%.

I only add, push too hard and we're in big trouble - what if Mr. & Mrs. Wright decide to enjoy their well deserved retirement? They didn't sign on for this scorn. I wouldn't blame them - but would be devastated if they left.

Obviously, there is a war at hand (or the Allison Singer, London, Offit evilness wouldn't exist - Autism Science Foundation).

We desperately need the Wrights - do not push them into a corner. Please.

Elucidatus

The first thing we need to do is stop walking in circles on the yellow brick road to see the Wizard (Autism Speaks). If we stop walking and donating to AS then perhaps they will get the message and start to listen to the parents of children with Autism. However, AL is preaching to the choir. No need to tell us that AS is a phony organization we already know that! We've known that ever since they decided to just focus on genetic testing. Seems like you gotta thing for Katie Wright. Talk about a real skirt chaser now.

Parent Speaks, no one listens.

Nancy, what are we going to tell Mark Roithmayr that we haven't been telling him for the past 3 years? That we really mean it this time?http://www.ageofautism.com/2008/02/bernie-vs-bryna.html

He's probably still mad we made a fuss about his $57,000 private jet back in 2006.

Medical science knows how to recover children from autism, for heaven's sake. $57,000 could possibly recover a 3-year-old human being from autism... or several human beings. But Autism Speaks isn't very curious about that. They have to be dragged to a DAN conference and would rather spend our money on more genetic studies and the occasional private jet.

When Roithmayr gets a rash of angry e-mails from parents, he probably just jokes to his secretary that the natives are restless again.

Benedetta

Chris;
I think vit D is a good way to heal our sick kids just like a low carb diet, or the GF/CF diet after a vaccine reaction. But it was a reaction to a vaccine that caused the problem in the first place that we are now trying to fix .

But the reaction to the vaccine is what started it all.

Ancedotal for my family: We are white which means we are designed to survive in less sunlight. When my daughter had her fourth DPT shot in late spring, and six weeks later she came down with Kawasakis, well during those six weeks she had been sick with ear infection, belly aches and all the stuff that goes along with an immune disfunction- never the less it was hot weather and she was living in a bikini and outside. She was feeling really bad the day we had her at the public swimming pool two days before she finally came down with the Kawasakis. The pior week even though she felt bad she was on a slippy slid with my younger cousins. Or I or her grandparents would take her for walks, picnics, on Horse Lick Creek where my parents were raised and is now a National Forest. All in her bikini.
When she was in the hospital the places were she was exposed to the sun is were the Kawasaki's rash (rash caused by inflamation of the blood vessels right below the skin) showed up first and the worse.

Because of this ancedotal I believe vit D would not have stopped the vaccine reaction. However, vit D might have improved my kids health after the intial damage. I did notice that it was always in the winter months that my kids had those hot returning fevers,that were not normal that reminded me of Kawasaki's without the rash. That made me almost crazy because I knew it was more than a virus. After all how many viruses is out there to catch? No one else in school had a virus and how often is a kid off from school for two weeks sick only to have it happen again in another few weeks or months?

Jenna

Hi Katie:

I think that your parents are terrific, but sort of in the east coast privileged way of terrific people in the special education community.

I live in a very wealthy east coast town, so I am familiar with this "be assertive but maintain good relations" phenomenon that is so common here.

My town has many kids with autism, with wealthy parents who refuse to sue the school district, are getting subpar services (to be charitable), and think the solution is to form committees, take local district officials to nice, polite lunches where they softly advocate for better services, and put up cute bulletin boards in the school every April that talk about autism awareness with lots of yellow smiley faces. Keep it happy!!

Most of these parents have kids that are not doing well...at all. The parents end up in the office of the local shrink, who tries to nudge them out of their depression with suggestions to accept their reality and focus on themselves more--maybe train for a marathon or take some girlfriends to ski-racing camp in Aspen.

All these parents wonder how on earth I was able to obtain such high quality services for my child and how on earth he has managed to make such fantastic progress. They ask me, and I tell them, but they still won't do it.

What I did was to figure out exactly what my child needed and then I did anything and everything I had to do in order to get it-myself. This included suing the school district, formerly threatening 2 additional suits, quitting my very fancy job, finding pretty much every single therapist myself both for early intervention and my district and training and totally micromanaging my son's programming for the past 8 years, doing a lot of the therapy myself, spending our entire nest egg, begging family members for money, losing almost all my friends, having my husband pass on promotions that would have required moving, etc.,etc., you know the drill.

Whenever I ran into a brick wall, which seemed like a weekly occurrence, I either FORCED someone to break down that wall, or more often, I CRASHED IT DOWN MYSELF. I played nice until the walls went up, then I got out the pick ax. ALWAYS. I did not try to endlessly negotiate with people who were never, ever going to do the right thing.

Something is just wrong about this whole AS thing. Your parents founded it, but created some sort of organizational structure that gave away way too much control. Bill Gates has a foundation, Michael Miliken has a foundation, as do many others--and they move every chess piece themselves. It can be done. You can create a foundation you effectively control.

It is time for your parents to admit that strategic mistakes were made at the outset and that polite advocacy efforts, a change in the political climate of the scientific world, and/or time will not work to effectuate change and make AS into the organization they envisioned. It is time for them to take matters into their own hands like so many of us have.

Because my school school district was so incompetent, I wrote every IEP myself, every word of it, beginning to end. Instead of fighting over the language they wrote, I ripped up their drafts and set the agenda myself with MY WORDS. When my local physicians were worthless, I pulled every string I had with the physicians in my own family to get my son the care he needed, including flying him all over the country--I did not bang my head against the wall trying to convince the local doctors to change their opinions.

Your parents need to not only form a foundation, but do the work (with you, with us). They need to find the researchers they like and fund the research they deem to have value. Don't CONVINCE SOMEONE ELSE, do it THEMSELVES. They can write the marching orders for Roithmayr and Dawson, and if they won't step in line, your parents can take their money, connections and influence elsewhere.

They need to seize control, somehow, some way. It is time.

Cathy Jameson

Loss of sleep???!!! Wake me up when real studies provide practical treatment to our families.

DSO

To Nonny Mouse:
Fragile X Syndrome is NOT caused by vaccine damage. It is the most common known cause for mental disability (mental retardation). It is also the most common known single gene cause of autism. The "x" refers to the "x" chromosome of which males have only one. Girls have 2 "x" chromosomes and therefore their symptoms are not as severe as the males.
And yes, there are plenty of institutions that reserach this area. The Kennedy Family has sunk a fortune into various agencies,two of which are Waisman Center at the Univ of Wisconsin, Madison and Vanderbelt University. There is also the MIND Institute at UCDavis and I think this institution has been castegated here on this blog.

And yes there are drug companies working on cures for this condition. Check out websites for Seaside Therapuetics and aFraxis Drug Company in San Diego. These companies have made it their sole purpose to find a cure for this condition, which research has implications for other conditions, including autism.

I have 2 grandchildren with Fragile X, one of which also suffers from autism. I was happy to benefit from genetic testing for a myriad of conditions, my son not being satisfied with the autism diagnosis or some spectrum diagnosis. The results of these tests have implications for families and affect generations. Some families finally getting a diagnosis of Fragile X can stop the madness and have others tested for carriers and stop it dead to go no further.

I simply don't believe someone quoted here that most diagnosed with autism are tested for Fragile X because that is the only thing doctors know to test for. When tested for Fragile X it goes together with a full spectrum of other tests to rule out other genetic conditions.

I am not saying that I feel that vaccines do or don't cause anything, but unless you widen your horizons and look at all angles, and you have persons such as Nooony Mouse and K. Fuller speaking of things of which they know nothing, your cause will continue to be looked at with a jaundiced eye.

nancy

mark roithmayr

mroithmayr@autismspeaks.org

Chris Menard

Look at the Vitamin D Theory of Autism!

If you are pregnant or have a toddler at the "age" it does no harm to supplement to healthy levels (year round- 50 ng/ml 25 OH D).

Are you someone who took the doctor's advice and covered your child with sunblocks- head to toe? The better educated one is the mroe they followed the directions...

Does anyone besides me and the AMA see the connection?

They made a boo-boo.

It does a world of harm to shield your self and your children from god intended (an evolutionarily demanded) sun.

Sun blocks and sun screens are not nearly as safe as anyone imagined. In fact there are several chemicals that ened to be researched and avoided. Add them to the "list".

Look at vitamin D defieicny for autism. After all...it causes EVRYTHING else!

No fan of Autism Speaks


The problem with Autism Speaks (AS) is when NAAR and CAN merged with AS a few years back. Another problem was and is the people like Eric London, Andy Shih, etc. who were and are associated with AS. The problem with AS is that they don't fund real science but the genetic junk science and other junk science that does nothing to look at the immune/gastro problems of vaccine damaged kids with autism. The problem with AS is that too much of the money raised goes for private jets and skyrocketing salaries for the executives.

And the problem with AS is that they are great at raising money (millions of it) and then turn around and flush it down the toilet.

Folks, these people at AS along with the CDC, IACC and NIH will not do anything to help your kids with autism.

The only ones to help these kids will be the families themselves.....unfortunately, I really don't see anybody that will do better than family members themselves.

DAN FAN

Katie,
Although you've been critical of AS before, calling for the resignation of the Autism Speaks Scientific Advisory Committee is a bold move, and one you should back up with further action if AS does not show clear signs of moving in the right direction.

AS' revenues have skyrocketed. And all those millions of dollars stem from your family starting an organization in your child's honor. If that organization is not living up to your family's vision, and most important, YOUR vision, then sever ties. Put your name behind a consortium of great autism organizations that fundraise to prevent autism and treat autism, not just drive dollars in the name of autism.

There is too much at stake to allow AS to continue on its current path. Think of all the cases of autism that could have been prevented if AS had just alerted families not to vaccinate while a child is sick. But even that small act, they're not capable of. How could they possibly put a dent in the autism epidemic?

Forgive me, but I don't understand what's so terrific about the work AS does. They're diverting money away from stopping what caused your own son's autism. What could be less terrific than that?

As "A mom" said, "This holocaust against our children is nothing to be diplomatic about anymore."

You're young and smart and one of the best fighters in the autism community. You don't have to settle for pleading with reluctant bureaucrats at AS. You would make headlines by starting a new organization and you'd have thousands of parents behind you.

This would not be an act of disloyalty to your parents (who do not support AS' current science initiatives), but an act of supreme loyalty to your son.

Please think about it.

Jill

Sorry but I think it's rather pathetic that Katie Wright is claiming that her parents have no control over the organization they founded. I think it's clear-Bob and Suzanne speak out of both sides of their mouths and what has that ridiculous organization accomplished so far? NOTHING!

Thorson, Autism Speaks, and CDC - Wasting a decade together

Of course Kennedy Kreiger gets a much of Autism Speaks' funding. Kennedy Kreiger merged with Marcus Institute. Marcus Institute was founded by Autism Speaks underwriter Bernie Marcus.

http://www.highbeam.com/doc/1G1-78679305.html

A Mom

This is what stumps me. If it's true.

I was told that Mrs. Wright said that they believed mercury was the culprit and that detox and biomedical interventions are absolutely necesssary. However, she also allegedly said that these interventions, the interventions her grandson was undergoing, were not practical for everyone.

I always thought that if they came out and said what they thought the problem was and what they were doing to solve it, that perhaps it wouldn't be so impractical for everyone anymore. Perhaps it could open doors for other parents to be able to help their children in the same way. But then I went to the AS message boards and saw what kind of crap was being posted over and over again to parents desperately searching for exactly the kind of help her grandson was receiving.

To be honest, it pissed me off to hear someone else being the judge of what is practical for my child. Any child.

I don't know if she really said that and if she did, if she feels the same way now.

This holocaust against out children is nothing to be diplomatic about anymore.

If the information I received about Mrs. Wright is incorrect, I apologize.

I am just going to wait for TPTB, whoever they are, to fall on their own swords, and the monster they created to devour their remains.

Our fully vaccinated child may not ever recover any further but those children that are being newwly diagnosed every 20 minutes deserve better because NOW we are all informed. We all know better. We see the results of the profitable experiment of injecting neurotoxins, carcinogens, and fetal products into babies' little muscles via the overbloated "sacred" vaccination program.

Robin Nemeth

What AL and DAN FAN said. Everything else is just whistling Dixie.

Bob and Suzanne, you need to put up or shut up. Stop asking your daughter to make apologies for your organization. Yes, I said 'yours', because you founded it and it is still seen by most people as yours and as receiving your support. If you've no control over where this ship is headed, you need to jump ship. Should have years ago, imo, but better late than never. That would send a message like just about nothing else. Course it would be better if you left the organization and that actually got some media coverage, but wth. It would still send quite a message.

As for everyone else who truly wants to make a difference – contact Toys R Us, TJ Maxx and Lindt, as well as everyone you know, and tell them the truth about AS. As for me, I take it a step further. I have tee shirts and bumper stickers that tell the truth about AS – but then, I've experienced their unscrupulousness first hand.

Nothing I've seen from the organization in the intervening few years leads to me to believe it's making any attempt to change.

This is criminal!

Katie,

Thank you for explaining how bad the situation is. What a lot of money! I cry to think how many kids could recover if that money was put to good use. And all this money is coming from funds raised in the name of these kids!

My question is: What should we do? Can you or somebody else make an action plan and put it as a post on this blog telling parents what we can do to force AS to put its money into the right research projects? They should not be allowed to get away with this.

A Mom

Thank you so much, DAN FAN.

I will snail mail and email the sponsors that I am aware of.

AL

Somebody please read Katie Wright's last comment.

Don't you people get it?

This family makes Ken Lay look like a street-corner hustler.

She basically just said "All these things are wrong but don't stop supporting them." (i.e. giving them money). WAKE UP!

DAN FAN

To: "A mom"

You asked for a sample letter to Kids R Us and other sponsors. How's this? (Help needed with the list at the bottom.)

Gerald L. Storch
Chairman and CEO
Toys "R" Us, Inc.

Dear Mr. Storch
I am [connection to autism]and I am writing to thank you for your very generous support for the cause of autism -- $1.6 million during Autism Awareness Month alone plus millions more in past contributions.

Sadly, I am also writing to call your attention to concerns that a great many of us in the autism comunity have about the way your generous donations are being spent.

Your customers expect good value for their hard-earned dollars on goods they purchase from you as well as charities that you endorse. But good value is not what they are receiving for their contributions to Autism Speaks.

The founding family of Autism Speaks no longer stands behind the organization's major research initiatives. Katie Wright, mother of the severely-affected child for whom the organization was founded, has publicly called for the resignation of the organization's entire Scientific Advisory Committee.

In her words:
"The grants AS’ Scientific Advisory Committee have chosen to fund are alienating the community of families. Parents see the redundancy and waste in so many over financed genetic and behavioral projects at the expense of meaningful treatment, biomedical interventions and environmental causation research. Over and over and over again, when board members had the opportunity to fund an innovative researcher, someone outside the box, someone studying critical environmental factors, someone proposing biomedical treatments, they have chosen the same names and the same tired projects. This tiny review board is jeopardizing Autism Speaks’ relationship with the community of families, who have a right to expect better."

Autism Speaks draws money out of communities such as the ones where your stores are located, but these communities see insufficient return on their investments. Massive overhead, poor research funding decisions, ongoing disputes with local autism organizations about legislaton and no dollars earmarked for direct treatment of individuals with autism or respite care for parents and guardians, make Autism Speaks the wrong choice for your customers' donations.

In 2008, Autism Speaks spent roughly 27% of its revenue on compensation. For any nonprofit, that is high. For a nonprofit serving families who are burning through their retirement savings to pay the high costs of their childrens' disabilities, some families bankrupted by the costs, the high rate of compensation at Autism Speaks is unacceptable.

As for advocacy, Autism Speaks seldom speaks. The organization has not made a much needed public statement about the sole person representing autism who was recently nominated to the National Council on Disabilities. This individual opposes finding a cure for or even preventing autism. There are many other examples of Autism Speaks' silence on crucial issues.

We sincerely hope Autism Speaks will make some major changes. One in 110 children currently affected by autism are not receiving good value for the $66 million Autism Speaks received in revenues in 2008. Until changes take place at Autism Speaks, we call your attention to other autism organizations. These very well-run nonprofits operate on lean budgets, fund meaningful research and provide services that are beneficial to those affected by autism and their families.

Autism Society of America
Autism Research Institute
National Autism Association


Thank you for your efforts on behalf of those affected by autism.

Sincerely,

Katie Wright

My parents are not involved in the selection of grants. The only people with the power to change this situation are Dr. Dawson and particularly AS President Mark Roithmayr.

I hope AS people reading this stay engaged. Your efforts matter a great deal. Much of the work AS does is so terrific. If these grants disturb you tell Mr. Roithmayr so, please don't leave the org.

Katie

PS- LK yes almost every child is tested for FX right after the diagnosis. I find doctors love to do that- it is a simple yes/no test. The problem is almost none of the kids have Fragile X- but it isn't for lack of looking.

A Mom

I recently read that the life expectancy for people with autism is 43.5 years.

And I also read (and heard Jamie Oliver repeat) that all kids now have a lower life expectancy than their parents - for the first time ever.

Our daughter tested negative for Rett's, Angelman's, Prader Willie, Fragile x and everything else her geneticist checked for.

Mercury toxicity? 10 times more than the median mercury toxic autistic patient in his practice.

Gluten and casein allergies, celiac disease? Negative also. But she is gluten and casein intolerant, as we found out after beginning the GFCF diet last year and reintroducing gluten and casein since them. Gluten -> seizures. Casein -> constipation.

I think that depleting their revenue will get their attention in a way that nothing else will.

And then just watch where "they" become employed next.

Donna K

Katie, thank you for exposing the problems with the AS research advisory council and agenda.

On another note, I'm not going to ignore some comments on this thread that I feel must be addressed. I am sure that I am just as frustrated as most and feeling the pressure of the urgency of getting real research and treatment happening now or sooner for our children, but I really feel that offending Katie's parents through insulting approaches is unwarranted, as well, only serves to put them on the defensive and is counter-productive. I can believe they feel just as frustrated as we do and want more of what we want based on comments I'm aware they've made through various venues. They have a very sick grandson whom they loved so much that they put themselves out into the public arena with all that entails. They could have helped Katie address Christian's health issues in private and not served our community at all in bringing attention to the severity and magnitude of the problem. For their efforts to take on such a huge endeavor, I am deeply grateful.

Katie's dad could not have achieved the positions he's held without knowing how to shrewdly manuever political minefields along the way. The minefield of autism causation is exploding every other step we take. I have to believe he's used his wisdom and skills gained through experience in developing a strategy that he determined would be most effective until such time as the political environment creates an opening for incorporating more of our community's research agenda. He's only one man and can only do so much.

There are people who definitely deserve our scorn and insults, but I feel it's absurd to take aim at Bob and Suzanne Wright.

Stagmom

Ms. Mouse, I have thre GIRLS diagnosed. No Retts. No Fragile X. Tens of thousands in the most advanced genetics testing in existence on earth. Nada. Zip. Zero. Zilch. Does that mean there should be no genetics studies? No. But perhaps in 6 years of existence and the vast majority of the funding/donation money, AS could have accomplished something I can use for my children by now? I think so.

Nonny Mouse

About possible crossover re FX (fragile X, for the un-initiated) and Rett syndrome and autism et cetera --

Fragile X can be CAUSED by vaccine damage. Studying Fragile X could, in the right hands, provide useful information. Those who think "genetic" means it happened by some kind of divine intervention, think again.

Rett syndrome and autism have underlying (biochemistry) problems which are the same. The effects are different, depending on a number of factors. But Rett is definitely a sub-set of autism. Certainly some Rett researchers know this.

The good news (up to a point) is that not only has Rett researcher found "the gene" - but they have also gotten far enough to reverse the damage (in mice).

AND they have gotten far enough in their thinking to come to the correct understanding that so-called epigenetic changes (biochemistry again) are the underlying problem. Some of them realize that "the gene" is not the final answer.

Don't be dismayed about research into Fragile X, or Rett syndrome, or other related matters. There are correlations.

bensmyson

This morning on one of the talk shows they talked about Brain Aneurysms. Approximately 2,000,000 people in the United States have unruptured brain aneurysms. Women are more likely to get brain aneurysms than men, with a ratio of 3:2. Some of the major dangers of having an aneurysm is having a stroke or dying. Ruptures are usually very serious. Forty percent of people with ruptures will die within a year. 4 out of 7 people who recover from a ruptured brain aneurysm will have disabilities. Brain aneurysms are most prevalent in people ages 35 - 60, but can occur in children as well. The annual rate of rupture is approximately 8 per 100,000 people or about 25,000 people.

8 per 100,000 people. Roughly 1 per 10,000 people. Imagine if 20 years from now the number of those developing an aneurysm would be 1 in 110.

Would people be stuffing money in every geneticist's pocket to find THE gene causing this epidemic? Or would they be looking at environmental causes?

Yeah but aneurysms kill maybe 10,000 people a year. And Autism doesn't? Any statistics on the life span of someone with autism? Are adults with autism living to 75 years of age? Oh that's right no one knows where they are. Sure 10,000 die but roughly 9,000 out of the 25,000 with ruptured aneurysms have no problems. none. 4 out of 7 have no disabilities. Can we say that about autism? 4 out of every 7 kids diagnosed with autism are fine? Of course not.

Risk Factors that doctors and researchers believe contribute to the formation of brain aneurysms:
• Smoking
• Hypertension
• Congenital resulting from inborn abnormality in artery wall
• Drug use, particularly cocaine
• Infection
• Tumors
• Traumatic head injury
• Family history of brain aneurysms
• Other inherited disorders: Ehlers-Danlos Syndrome, Polycystic Kidney Disease, and Marfan's Syndrome
• Presence of an arteriovenous malformation


Risk Factors that doctors and researchers believe contribute to the formation of Autism:

• Vinyl siding and flooring
• Old woman eggs
• Old man sperm
• Rainy weather
• Poor parenting
• Cold mother
• Genes
• Not vaccines

Trace

Autism Speaks reminds me of all of the groups out there that are raising money to fight or find a cure for various diseases. Do they really know the cure for something like cancer and yet they continue to let these foundation owners and higher ups get rich and fund pointless studies? I quit giving money altogether to these groups. They are just a front. If you really want to learn about something like cures (or prevention) you need to hit the health food stores and read some of the books you find there, maybe consult with a naturopath. These groups all seem to have an agenda that involves money but no real care for the people who are really suffering. It is all done "in the name of good" but the public is being snowed. Sorry but autism speaks makes me sad and sick to my stomach. All I can think about are the children that will be affected in the future and how that could be blamed on the fact that autism speaks could not get their act together.

Garbo

I guess the question is, do you believe it is possible to change the course of the S.S. Autism Speaks from within? And if the answer is no, or not for a very long time, then why not start funding researchers ourselves with direct contributions? Tell us about the researchers who got rejected for grants. Pick the best designed, most targeted studies. Tell us how much it would cost. The less time spent kvetching about AS, the more time we can spend undermining their authority!

K Fuller Yuba City

I get the feeling that research at AS is nothing but a puppet show. Who is pulling their strings? It can't be the Wright family. If it was I believe Katie would know this.
Are they just a front to keep the general public thinking that Autism must be wholly genetic? Parents who have not experienced the horror of Autism are given a false sense of security. The powers that be must keep people thinking that Autism must be genetic or this giant organization wouldn't be researching this way.

To L.K. I would wager that most children, even those with Regressive Autism,have been tested for FX, as it is the only damned thing Doctors know anything about.

mlinn

I don't think we should harm the fundraising machine that has been established at AS--what we should do, as Katie is advocating, is change the dynamic/composition of its various committees. A huge part of the problem is most parents blindly support AS (and they blindly listen to their pediatricians and psyche docs, too). Educating everyone is impossible, cleaning house is not. The benefit is the lemmings won't even know the difference and will continue to support. Katie, what is the best way to effect change? Who do we send letters/e-mails to? When/how are theses folks appointed/elected? Always appreciate your posts!!!

A Mom

TJ Maxx and Lindt are also AS sponsors. We need to contact all of their sponsors.

Could someone compose a really good letter and a list of sponsors to make it easier for all of us to call attention to this travesty?

DAN FAN

Yes they do need to resign. But they won't just because we think they should. In fact, nothing at Autism Speaks will change as long as the money keeps rolling in.

Autism Speaks, but Money Speaks louder.

Toys R Us has raised $5.6 million for Autism Speaks. Here's the kind of financial pressure that might bring about change: A letter/e-mail writing campaign to corporate partners such as Kids R Us asking them to stop raising money for AS, and explaining why. If Kids R Us etc. continues soliciting donations for AS, then a second round of e-mails is in order, informing Kids R Us that we (and our extended family and friends) are no longer shopping there.

The entire autism community needs to join forces to financially pressure these corporate partners to cut ties with AS, and then MAYBE we'll see some action in science funding.

The only language Autism Speaks understands is Ka-ching. Everything else is PR and lip service to support its overhead, payroll and other financial obligations.

As much as I hate to say it, Suzanne Wright has become part of the lip service campaign to appease parents into thinking things will change. She needs to stop publicly representing AS if she has zero power in the policy department.

Here's how to reach Kids R Us:
http://www5.toysrus.com/guest/contUs.cfm

Julie

Thanks Katie. It must be frustrating for you to know that the organization that your parents founded has been taken over by people who are part of the old school thinking and locked in the politics of research. Maybe your parents should jump ship and join forces with a different organization w/ more consistent philosphies? Why keep raising $$ for them? I was encouraged by your earlier posts re the attendance at DAN but to me this is akin to trying to convince my pediatrician that the vaccines were an issue and that my kid is sick - she does not just have a psychiatric disorder. In other words a huge waste of time. Sadly this is why I will not donate or raise funds for AS. I am too busy raising money for our local treatment center that is actually providing services for kids now.

Ann Clinton

Bottom line - this debate will not be won by words, it can only be won by proving them wrong and that means doing the genetic tests, ruling out conditions such as Fragile X, Rett Sydrome, etc, and pariticipating in the studies such as the Simons Simplex Collection, AGRE and CHARGE.

anonymous

How many of you parents out there would lose your "reputation", your fortune, GO TO JAIL, or even DIE to stop this autism massacre of our children at the hands of Pharma? I WOULD! If I could guarantee it would stop. Bob and Suzanne Wright have that power. They just won't commit to doing what's right because they would suffer. (Well, actually they think they would, but in the end they'd be known as the people who ended this.) Polio was 1 in 3000! Autism 1 in 91! AS could SAVE OUR PLANET! But they'd rather save themselves.

AL

Katie,

I can't deny that you are SAYING all the right stuff, but call me a terminal cynic. I'll believe it when daddy is the one saying it, and something is done about it. As it stands now, talk is cheap, but inaction is costing our kids big.

Do me a favor, print this out and deliver it to daddy.........


Hi Bob,

To put it bluntly, let's go, sh*t or get off the pot. Do ya hear me Bobby? Are you reading this? We're not trying to pass something through congress here. This shouldn't be that hard. I mean after all you were once a big wig media executive, right? You were the Chairman of the Board for NBC/Universal for crying out loud.

Do you mean to tell me that you can't handle a 5 year old non-profit? Is that why NBC always lagged behind ABC most of my life?

Either you never truly measured up to your resume, or you're just not walking the walk. Which is it?

I personally guarantee that Kim Stagliano will approve a post from you, Bob. Why don't you tell us about it? Why don't you tell us what is taking so long? Why don't you explain to all of these parents why you had enough influence to get Autism Speaks founded and off the ground, one of the hardest things to do, but you don't SEEM to have any control over it?

Then explain to them why, if you truly don't have any control over Autism Speaks, you haven't tried to help ARI or the NAA get some face time on NBC? Connections aren't what they used to be?

I'll sum it up for everyone reading this. Pharma ad dollars fund broadcast television in a big way. Old Bobby can't do anything for us because he knows that it would be career/social/political suicide for him, thanks to pharma influence. Isn't that right Bobby?

You can fool some of the people, all of the time, but not me, ever.

Consider this an open invitation. Either write something for us here, or give a call to Ed Arranga at Autism One. He's another one that I personally guarantee. He would definitely let you explain to a live audience at the Autism One conference next month, I have no doubt. If you can't make that, then there's always A1 Radio. Give a call to Curt Linderman. Oh he'd be more than happy to discuss this with you on his show, I'd bet on it. See that? We're just a phone call away Bobby. Try actually doing the right thing for once, rather than spending millions creating nothing but an image of it.

-AL

P.S. I don't care if you approve this comment, but somebody needs to say this to your dad. Enough is enough. He's starting to remind me of those three stooges in orange vests we all see standing on the side of the road staring a pothole like it's going to fill itself. Time to get moving!

Gayle

Katie-You are right! We can no longer afford to waste millions of dollars on outdated studies that prove nothing. The time has come for the whole Autism Speaks Scientific committee to be replaced by researchers that addresses the fact our children have a medical illness. Our children do not have a developmental disability. Our children are suffering from a neuroimmune dysfunction syndrome! We can't afford to lose a whole generation of people!

Anne

So disappointing!!! I'd hoped that since some members of AS had attended a recent DAN conference, they would actually fund some meaningful, biomedical research for a change. Guess that was just wishful thinking. So sad, as Autism Speaks could be such a help to the autism community, given the money they have available. Right now, i just think they are pathetic.

Dawn

I think as parents, we need to start contacting Autism Speaks and their Scientific Advisory Committee and letting them know how we feel.

It doesn't matter how much we privately resent the millions of dollars that are not helping our families and our children. How many well-intentioned people gave $1, $2, $5, or $10 while shopping at Babies R Us or Toys R Us this past month?

I asked the girl behind the counter yesterday at Babies R Us if a lot of people donate, and she said yes, they do. She also went on to say that we need to keep donating until this is figured out.

It made me sad that so many people are trying, but their money is not helping.

They say the squeaky wheel gets the grease. Why can't we make something happen?

L.K.

While my child has FX without Autism, I find it ridiculous that no one in the Autism community is willing to look at genetics as a cause. Why is it so hard to say that it is genetic? Why aren't more of you testing for FX? I just saw a episode of "The Drs" and there was a family with 2 children with Autism, a boy and a girl. There is clearly a good reason for testing this family. There are more FX kids out there that are not being tested and the families will not know about it until the next generation is born with it as well.

I am not saying that there are not other causes for Autism, but even the FX foundation clearly states it is one of the KNOWN causes of Autism.

Don't dismiss our research then decide to benefit from it when it proves to help your child. They are funding this research because it is clearly showing progress and will ultimately help Autistic children as well as those with other syndromes and illness. If you want to hear about our research, go to our websites or even our conferences.

Be fully informed before you fight those that are trying to help.

Gayle

Katie-I congratulate you on having the courage to take a stand in calling for the replacement of the AS scientific advisory board! Funding the same old "developmental/genetic" studies over and over has tragically wasted millions of dollars. It's time for a change in the direction of meaningful studies that address the neuroimmune dysfunction syndrome that our children are suffering from! We can't afford to waste any more time and lose a whole generation of people!

ObjectiveAutismDad

Every year, for 10 years now, there has been a funding race in my area for AS. I stopped raising money for that race several years ago.

We all need to stop sending money to these guys until they get the message.

AnaB

It is offense to me that grant requests for children with REGRESSIVE Autism are routinely ignored. My child, who has Regressive Autism and NOT one of the Autism genes, and children like him are completely ignored by AS. Why? I want an answer. There are too many of them to justify such dismissal. It is starting to feel personal.

Sylvia

This should be our rally call:

THROW THE BUMS OUT!!!!
(or as Katie more articulately put it: the SAC needs to resign)

Anyway you slice it, they need to go. Now.

Anne McElroy Dachel

Massive amounts of money are going into research specifically designed to tell the public that autism is genetic and therefore no one is responsible except the parents. This is proof that experts will do anything to avoid honestly addressing the most heated controversy in medicine today.

The CDC, IACC, and AS are all one in the same when it comes to the cause of autism: It can't be the vaccines.

Ignoring the problem won't make it go away. These kids will just keep on coming and coming until they bankrupt us.

Anne Dachel
Media

Abortion Speaks

Genetics = prenatal testing.

Bob Moffitt

Katie, my family will be forever grateful to you for having the personal courage to voice many of the same criticisms we have regarding Autism Speaks.

Your comments today mirror our own .. clearly identify the biggest problem with Autism Speaks ..

"The grants AS’ Scientific Advisory Committee have chosen to fund are alienating the community of families. "

However, there is something the wider Autism Speaks organization has proven it can do .. and .. should do .. which is use their vast main-stream media and political influence to launch a nationwide "awareness" campaign urging public support of pending federal legislation that seeks to fund a scientific, independent study of "vaccinated vs. unvaccinated" populations to ascertain, once and for all, if our vaccines and the aggressive policies by which they are administered are as safe and harmless as public health officials insist they are.

How about it Autism Speaks? The cost of such an effort would be minimal .. and .. it would help undue some of the "alienation of communities" created by your Scientific Advisory Committe.

Pierre Morin

Dear Katie

You are dead on , I have no problem stating that for the most part , that the medical research agenda over the last 10 years has been under the control of pharmaceutical interest.

It is also clear that those interest , are not in the best interest of our children in any form or fashion .

Until parents make an effort to break this research agenda , and start influencing the direction of new research , we will continue to see , what has been occuring over the last 10 year .

For the most the research funds that should been directed at improving the the physical and mental of our children , has been usurp towards research that have limitted use or would be considered dead end .

It is time to mobolise and start changing the agenda .

Pierre

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