In Memory of Ken Humphrey of Kirkman Labs
Totally Kids and Parents United Against Autism Toy Drive Success

Bob Wright Grandfather Warrior Speaks Out Against Autism Insurance Discrimination

Bob wright TRENTON, NJ (May 18, 2009) -- Autism Speaks Co-founder Bob Wright today testified before the New Jersey Assembly Appropriations Committee and the Senate’s Health, Human Services and Senior Citizens Committee alongside Assembly Speaker Joseph J. Roberts, Jr., parents of children with autism and other autism advocates in support of the state’s autism insurance reform bill.

“...Imagine the outrage if insurance companies refused to cover necessary treatments for children with cancer or diabetes,” said Wright in his testimony. “That is exactly what is happening with autism, and it must come to an end right now.”

Read the full press release at Autism Votes HERE.

Comments

not believing A.S.

Bob Wright and A.S. have done little to nothing to really make a difference and it has all been about publicity and making money to this organziation. The parents who run around and advocate for A.S. are people who are publicity seeking *** themselves and whose own kids are falling into a hole because the parents can't open their own eyes to biomedical intervention. Bob Wright "Grandfather Warrior." Give me a break!

Benedetta Stilwell

Robin, the canaries in the coal mind was used and understood as far back as 1986!

Robin Nemeth


Henderson wrote:
>The Wrights/Autism Speaks are treading water with everyone and everything... they are trying to build a "big tent" and are doing an amazing job at that.>

A ‘big tent’? Who do they hope to include under this tent besides the parents of those children who can’t speak for themselves?

Please don’t talk to me about AS and their ‘big tent’. As I understand it, the term means that all kinds of people with all kinds of viewpoints are welcomed. The last time I was at a walkathon I was welcomed enough to have been given a table. I thought that that meant that things were changing. But given what I’ve heard publicly since that day, from AS, it does not seem to be the case. By ‘publicly’ I mean on cable television, on my radio, in major newspapers and magazines. All I’ve heard is the same old you-know-what. “It’s a mystery.” I heard these very words from one of Christians grandparents on MSNBC in the early days of autism awareness month. Until I hear somebody from AS on my television or my radio during prime time news (in between pharmaceutical commercials) saying that there is a great deal of evidence that vaccines are harmful, or until I receive a public apology from the local president of AS saying that she is sorry that she tried to have me arrested simply for standing on a public sidewalk politely asking people if they would like information about vaccine safety—until one of these things happens I will have no reason to believe that AS is working toward the same goals that parents who believe that their children suffer from vaccine damage and not autism are working toward.
Henderson wrote:
>They absolutely cannot come out and say that vaccines cause autism (or any other environmental trigger).>

Why not? I understand why they cannot. I would like to hear YOU explain it to the rest of us.
Henderson wrote:
> Silence is SLOW... has to be well designed, corroborated, etc. Our n=1 studies are telling, but they are ultimately meaningless. WE NEED Autism Speaks (and ARI for that matter), to run well designed peer reviewed university journal articles. The quicker the better. >


There is a difference between slow and careful, and slow because people are deliberately obstructing progress and the free flow of information.
How many children have been lost to full blown autism in the four or five years since I’ve heard from so many parents and doctors and scientists and journalists, on the internet, that vaccines might be harmful? In those four or five years I’ve not heard one word from the grandparents about vaccines. I’ve heard from Katie, but Katie doesn’t represent AS. Or does she? In all of those years I haven’t expected that anyone would come on my nightly news programs and (in between pharmaceutical commercials), say “Oh look! Vaccines cause autism!” But I don’t think that it’s too much to expect that when Brian Williams is on NBC reporting about thimerosal, and the label is shown, I don’t think that it is too much to ask that they don’t crop out the picture, on the label, of the skull and crossbones. It is flabbergasting to me that this doesn’t seem to bother Bob or Suzanne at all.
Henderson wrote:
>It is flabergasting to me that in 2004 (when I entered this world)... we were the only ones saying our kids are the canaries in the coal mine (environmental triggers of whatever sort). NOW THIS IS MAINSTREAM - in five short years... THANKS to Autism Speaks.>

Who are you referring to when you say ‘we’? As in ‘we were the only ones saying our kids are the canaries in the coal mine’. I have been saying this since 2004, and I do not consider myself in any way affiliated with AS. I have not been saying anything quite like ‘environmental triggers of whatever sort’. I have been saying that vaccines are likely a very significant contributing environmental factor—perhaps the most important environmental contributing factor. I have heard nothing at all about environmental factors, publicly, from AS. Please don’t tell me that if I go to Fair Autism Media and listen to Katie, that I will see that I can thank AS for raising awareness about vaccine issues. It’s been my understanding that Katie doesn’t represent AS. Or does she, now? It’s been my understanding that her parents represent AS. If Katie represents AS, why is it that in the first days of autism awareness month, when I turned on MSNBC, it wasn’t Katie who I heard speaking about autism, but her parents?
It’s not what an organization says that matters, it is what it does, or at the very least it is what they say PUBLICLY. And publicly I’ve seen nothing from AS that would lead me to believe they have much interest in convincing anyone, let alone a state legislature or a health insurance company, that it might be a good idea to look into vaccines as a cause of autism, or that it might be a good idea to look at the treatments that parents who’ve said they believe their child was harmed by vaccines are claiming are helping, significantly, their child.
Perhaps I’m just not paying enough attention. Perhaps I missed it. Perhaps someone else turned on their nightly news and (in between pharmaceutical commercials), heard Bob and/or Suzanne broach the subject of vaccine damage, or diet/nutritional treatments or chelation as a treatment for autism.
I recently wrote a letter to Monica Robins of WKYC TV here in Cleveland, when she was being honored at a recent AS benefit here. I asked her why there hasn’t been a single story about vaccine damage and autism on the station, and she replied to me in an email that she has done them. I cannot find them anywhere. Wouldn’t there be some archives kept somewhere of them? I wrote her back and I asked her to please help me out and show me what she’s done, and I might as well have been talking to a rock. No reply. If the grandparents have done more than speak to state legislatures in an attempt to insure insurance coverage for a very expensive treatment that most parents I’ve spoken with have found only marginally helpful, I don’t know what it is. Enlighten me please. If they’ve done anything to break the code of silence, what have they done? Their daughter has spoken, but we don’t hear her on the main stream media. She might be proud of them, but I don’t see how I can be.
Yes, progress has been slow, I think the parents of the children who’ve been lost to full blown autism in the most recent years—the years when it shouldn’t have happened because there were too many people who should have known better—I think that they are all too aware of this.
Henderson wrote:
>If you have any doubt about the org... go to Fair Autism Media and see the Katie Wright/David Kirby interview... it takes 30 minutes... Well worth the time. Katie explains who the real jerks are (NAAR), now reincarnated into ASF.>

The real jerks, in my opinion, are those who won’t speak their mind publicly about what they truly believe.
Henderson wrote:
>GO WRIGHTS GO! I wish you were my parents (not that they aren't supportive. "that's interesting honey", when they aren't playing golf or playing bridge). To imagine.. the Wrights were soon to retire and instead have done nothing short of revolutionized our world (and they have to keep US at arms length - and we just have to accept and UNDERSTAND that). >

I can understand why it might be easier to speak for the parents of autistic children at all, now that Bob is about to retire. I don’t understand what they have done to revolutionize the lives of parents who believe their child was lost to vaccine damage. I don’t understand why they have to keep us at arms length. I find that an odd way of describing trying to have someone arrested, by the way. They tried to have me arrested simply for standing on a public sidewalk politely asking people if they would like information about vaccine safety. I was harassing no one and I was threatening no one. Not Bob or Suzanne personally, but the local president of AS. She tried to have me arrested simply for politely asking people if they would like information, and when I wrote to the parent organization about this I got no reply.
Given my own experiences with AS I would have to say that ‘keeping us at arms length’ is a bit of an understatement.
I cannot understand this—this necessity for ‘slow silence’, this keeping the truth at arms length. I can’t understand it and I don’t accept it. Why should the fact that the grandparents of Christian Wright accept these things sway me to feel otherwise?
Henderson wrote:
>In organizational theory - we are all members of "Autism"... we (warrior parents) are advocates for our truth... that's our job. Autism Speaks job is to try to listen to EVERYONE in the big tent. >

Autism Speaks does much more than listen. They have a considerable amount of money and a considerable amount of influence, as is obvious by the fact that Bob is speaking to the NJ legislature. As far as I’ve seen they haven’t used any of that influence to help those who believe that their child was vaccine damaged. It’s a good thing that they’re working toward recognition that children with autism are as deserving of insurance coverage as any other child. But I don’t see them working at all toward doing anything to counter the influence of the government health officials, or of the vaccine makers, or of the main stream media’s incessant refusal to cover this issue fairly.
To make the claim that children with autism are as deserving of health insurance benefits as any other child seems to me to be obvious—a complete no-brainer. It’s as obvious as saying that the sky is blue or that the sun will rise in the east. I don’t understand how this makes one a ‘warrior’.

LPS

Sure "henderson". You keep telling yourself all of that. Robin, if I see a car with the AS bumper sticker I just shake my head at the ignorance of the brainwashed parents inside.

henderson

WOO HOO Age of Autism! It's about time you recognize the Wrights for being AMAZING WARRIOR GRANDPARENTS!

To answer the code of silence question above... The Wrights/Autism Speaks are treading water with everyone and everything... they are trying to build a "big tent" and are doing an amazing job at that.

They absolutely cannot come out and say that vaccines cause autism (or any other environmental trigger). Silence is SLOW... has to be well designed, corroborated, etc. Our n=1 studies are telling, but they are ultimately meaningless. WE NEED Autism Speaks (and ARI for that matter), to run well designed peer reviewed university journal articles. The quicker the better.

It is flabergasting to me that in 2004 (when I entered this world)... we were the only ones saying our kids are the canaries in the coal mine (environmental triggers of whatever sort). NOW THIS IS MAINSTREAM - in five short years... THANKS to Autism Speaks.

If you have any doubt about the org... go to Fair Autism Media and see the Katie Wright/David Kirby interview... it takes 30 minutes... Well worth the time. Katie explains who the real jerks are (NAAR), now reincarnated into ASF.

GO WRIGHTS GO! I wish you were my parents (not that they aren't supportive. "that's interesting honey", when they aren't playing golf or playing bridge). To imagine.. the Wrights were soon to retire and instead have done nothing short of revolutionized our world (and they have to keep US at arms length - and we just have to accept and UNDERSTAND that).

In organizational theory - we are all members of "Autism"... we (warrior parents) are advocates for our truth... that's our job. Autism Speaks job is to try to listen to EVERYONE in the big tent.

Katie (married to a very peer reviewed/very published experimental science prof - who is still fighting me re: the science behind what we are all doing).

Robin Nemeth

Katie,

I’ve taken the bumper sticker off of my car. If you don’t feel as though you’ve been thrown under the bus by the organization, it isn’t my place to be telling people that that’s what’s happened.

Jimsomnia

Robin is correct about the "medically neccessary" issue. This is the not-so-hidden problem with almost all the "insurance reform" bills making headlines. The insurance and pharm lobby in every one of these states gets involved with the language used in the bill and inserts "medically neccessary" and "science based," two terms routinely used to deny coverage for any biomed treatments or chelation or GI issues.

In Oregon, the current bill recognizes only ABA as meeting this criteria. Furthermore, the licensing regs for ABA certified practitioners require a masters degree in therapy or child psych, so it frther limits the number of therapists who will be available for treatment.

Not covered at all are the biomed treatments that have obviously helped (not cured) my son and many others. These treatments have been prescribed by a state licensed DAN physician but are not considered science based or medically neccessary. The fact that my son is recovering (slowly, expensively, over ten years) is considered "anecdotal." This is probably because the damage is vaccine related. OHSU, the 800 pound gorilla of autism in Oregon, kills all biomed discussions because their money comes almost exclusively from insurance and pharm research (funded by Autism Speaks).

ABA is good for many kids, it's good that insurance will cover it (with a lot of strings attached), but this is all we'll get from insurance reform.

Autism Speaks is changing, but very very slowly. Let's hope people like Martha Herbert can eventually make a difference. If you dig deep in AS's website, you'll find links to ARI and studies on diets and biomed treatments, but the change make take a long time. "Five to ten years" as the pharms like to say. They were saying that ten years ago. My son will be in his twenties by then. We spent everything we had years ago (just like Bob Wright says), but the insurance reform isn't going to help us at all.

Robin Nemeth

I stand corrected.

From the GE website:

Bob Wright, Vice Chairman of the Board and Executive Officer of GE. Chief executive officer of General Electric Financial Services.

Katie Wright

I am so proud of my Dad and the other courageous Moms and Dad who testified yesterday. It is about time that legislators address the lack of insurance re-imbursement for people with autism. This gross inequity is destroying families and leaving children without the therapies they need to progress.

Yes, I too want all of Christian's other therapies to be re-imbursable as well, but this is the beginning. We spend a great deal on Christian's medical interventions but his ABA, speech and OT cost are also super expensive. I know the DAN! doctors and their interventions are essential to our children- believe me I know. We will get to that next step of re-imbursement, I have no doubt. We can build on these victories and in the meantime lessen some of the financial pressure on families.

Robin Nemeth

I would like to correct my previous post. I believe that Bob was CEO of GE, not the subsidiary Amersham Bioscience

[Editor's note: This is only partially correct. Bob Wright was the head of NBC. He was never CEO of General Electric.]

Robin Nemeth

Benedetta,

The code of silence says that only certain things get to be said publicly. Ask yourself why you never hear the mother of Christian Wright, the boy with autism who Autism Speaks was founded for, speaking on your television (between pharmaceutical commercials on the nightly news), or in front of state legislatures. Do you think it’s just a coincidence? The mother will say things like “My child was vaccine damaged. My child improved when I did nutritional intervention and chelation.” The grandparents will say only things like “It’s a mystery, the cause of autism!” I hope that you don’t believe that the fact that Bob Wright was CEO for NBC and was once a CEO with Amersham Biosciences—a subsidiary of GE that produced thimerosal—I hope that you don’t believe that Bob Wright’s history has no bearing on the things that he is able to say in a public forum.

The code of silence says that only therapies that don’t implicate vaccines (such as ABA) will receive government money. As such, only these therapies will ever get any public media coverage and only these therapies will be considered as ‘legitimate’ by the medical and insurance industry, and by the public health officials who poisoned your children (some of them into complete oblivion), to begin with.

The code of silence says that if we’re going to speak of the cause of autism, ever, in a public forum, all that we will be allowed to say is ‘genetics’. Even though there is no such thing as a genetic epidemic. For an example of typical press coverage regarding this, see the first link that AnneS lists, or look at some of the comments in the second link.

The code of silence says that when children are sat on by their teachers because they can’t go home and say to their parents “mom, the teacher sat on me in school today”, or “dad, the teacher shut me up in a three foot by three foot square box for half of the day today”, the only thing that the man on my tv can say about this (in between pharmaceutical commercials on the nightly news) is “aw, this shouldn’t be happening!” as if he cared. (If he really cared he would either insist that autism/vaccine damage get fair media coverage, or else he would resign. The days when those in the media could legitimately claim ignorance are, in my opinion, long past.)

The code of silence says that when you’re standing on a public sidewalk asking people, politely, “would you like some information about vaccine safety?”, and the Autism Speaks fundraisers tell you that you’d better leave or else be arrested, you’d better not plan on being able to speak about the incident in most public forums. Even your local autism support organizations, such as Autism Society of Greater Cleveland or Greater Cleveland Asperger Support, will make sure that the code of silence is obeyed on their public internet forums.

AOA, please link my name, at the end of my comment, to my website. It will not imply that you support my views about Autism Speaks. It is my site. I created it and take full responsibility for it. It will only reassure me that there is still one public forum where such views will not be censored.

I do understand that people and organizations change. I have seen little from AS to lead me to believe that they, or Bob Wright, has changed.

'Grandfather warrior', my ass. Please excuse my language. Or don't. But please don't censor me for my expletives, as Jenny has shown us that it is PC to use them when we are really, fuming angry.


Jenna Smith

Excellent job Hilary and Holly and all the others!! You are an inspiration.

Jenna

Benedetta Stilwell

I liked your article, very good comparison between autism, cancer, and diabetis. But I did not understand about the grandparents and code of silence? Please explain further.

AnneS

More press on the issue:
http://tinyurl.com/pzs7su
http://tinyurl.com/osqszs

Robin Nemeth


I haven’t read the details of the bill. Does it include coverage for chelation? For nutritional supplements, for enzymes, for HBOT, for transcranial magnetic stimulation, for DAN doctors? Or does it include coverage only for the ‘proven’ treatments, ie the treatments that pose little to no threat to the establishment?

Imagine the outrage if the American Cancer Society or the American Diabetes Association were working with the people who caused diabetes and cancer in order to help protect them from media scrutiny, from lawsuits, from the loss of their profits.

Imagine the outrage if there were a sad story to tell about the mother of the child that the diabetes or cancer organization was founded for, but the media had no interest in telling it because they were too entangled in the bed sheets with those who had destroyed the child. Imagine the outrage if the public were aware that only the grandparents had agreed to honor the code of silence that the government health officials and the media and the corporations and their profits demand, and so only the grandparents could ever be heard by the insurance industry, by the government, by the public?

Imagine the outrage if the public were to learn that the diabetes and cancer societies were busy using their considerable influence not to help spread information, but to thuggishly intimidate those whose beliefs threaten their status quo?

Imagine the outrage if insurance coverage for cancer and diabetes treatment were finally accomplished, but the very best treatments--the ones that worked toward actually fixing the problem rather than simply slapping a bandage on it-- were excluded.

I was reading the column on Ken Humphrey. Fifteen years ago I was helped a great deal by Mr. Humphrey. And while I haven’t read all of the details of the insurance bill that Mr. Wright is supporting, I have little doubt that the devil is there, in those details. Something tells me that if Mr. Humphrey were somehow able to listen in on these hearings, and understand what is meant by ‘medically necessary autism treatment’, he’d be turning over in his grave right now.

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