WHY THE AUTISM SPEAKS BLACKOUT ON JENNY AND DAN!?

By Katie Wright

Like tens of thousands of parents I watched history being made on “Larry King” Wednesday night. Jenny McCarthy held up the AAP’s  1983 infant and toddler immunization schedule and the 2008 schedule and said what all of us have known for years, “too much, too soon.” We can no longer play russian roulette with our babies’ developing central nervous systems. As Kirby so eloquently said, “the debate is over, after the Polings concession, it is a fact that vaccines can trigger autism.” Newsflash- AAP- mitochondrial disorders among ASD kids are neither rare or in most cases, pre-existing. My child has a mito disorder too. They are triggered by too many vaccines at too young an age, overloading a developing immune system.

I almost felt sorry for Dr. Tayloe, the routing he endured was painful to watch, yet well deserved.

His cohort, Dr. Karp, spoke about or families’ concerns about over vaccination in his usual disrespectful manner. As Jenny McCarthy so succinctly said, we not anti- vaccine; we are pro safe vaccine and vaccine schedule. Karp and Tayloe are apparently fine with the fact that ether, aluminum, ammonia and other toxic substances remain in vaccines as preservatives. It is a sad day for the AAP to declare itself to be against basic vaccine safety. Their claims of financial self-sacrifice in their blind adherence to the world’s most aggressive infant vaccination schedule are grossly disingenuous. If they want to learn about financial sacrifice they can talk to the parents of an autistic child.

I was so proud of my parents, Bob and Suzanne Wright, for doing the impossible and having the United Nations declare World Autism Day. The epidemic deserves this recognition and sense of urgency. While most of the geneticists invited to speak about autism made ridiculous claims about how autism is “90% genetic” all the questions from the audience were both dismissive and angry about the endless amount of money poured into gene research while more promising and urgent avenues of investigation are ignored. I was thrilled when my Dad said yes, that Autism Speaks was sponsoring a vaccinated vs. unvaccinated population study, in response to a mother’s question.

Meanwhile Autism Speaks has sadly been ignoring all the exciting news that the vast majority of parents deem important. There was no mention of Jenny and David having their history making debate with the AAP and there is no mention of this weekend’s DAN! conference on the website. I cringe when I hear AS leaders telling parents to look to the website for help and information. On World Autism Day, of all days, the only AS science “news” was a ridiculous and insulting story was about how TV watching may cause autism! I swear I am not making this up. AS science “news” exhaustively reports on each and every Paul Offitt op-ed piece, everything remotely related to the genome,  AS ATN member Dr. Nancy Minshew’s “gloves off” assertions that autism is totally genetic, NIH studies about why the GF/ CF diet is dangerous and how old parents cause autism and every gene study from Cold Springs Harbor. Meanwhile substantive science news, science that parents actually care about and science that could actually help our children is ignored. AS will not acknowledge the Defeat Autism Now! conference happening this weekend. Dr. Polings’ essays about vaccines triggering autism in his daughter, David Kirby and Deidre Imus’ front page Huffington Post pieces about vaccine safety, the CDC, and making our environment safer for our children- all ignored. The latest GI treatment news and Dr. Wakefield’s response to his critics- also ignored.

If Autism Speaks only mission were awareness that autism exists this would be OK. However, the walks collect tremendous amounts of money for research and services. When I was a kid I was told over and over again, if you are going to do something, do it right. If you say you are a big tent and that you welcome and respect the concerns of the parental community get your scientific leadership to show up at a DAN! Conference. This has yet to happen in four years! I am not talking about setting up an AGRE table; I mean scientists attending the workshops and actually listening to parents. Somehow they find the time to attend and sponsor dozens of international eye- gazing and brain imaging workshops, but cannot find the time for DAN!  Priorities need to change.

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half.  Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Comments

[Robin Nemeth]

Kerbob1,

The “death” sentence you’re referring to, if I understand you correctly is ‘All Pennsylvanians will see a reduction in the need for special education programs and a reduction in long term care costs for the most severely impacted.

Are you trying to tell me that you think that the education and the long term care lobbies are trying to kill this legislation because they know that successful, insured treatments will cut into funding that they have traditionally been receiving? This is something I’ve sometimes wondered about—whether the educators are reluctant to lose the money they get for special education. I know I hear a lot about how their resources are stretched because of the surge in the numbers of special needs children. But I wonder sometimes if they don’t see it as a positive thing, some of them. The ones whose careers are in special ed, the ones who’ve stood to benefit in the increase in special education services that have been required.

What does Autism Speaks mean, in this action alert, when they say ‘If all share, everyone will see a reduction in overall costs’? (This doesn’t follow, it seems to me. Simply through sharing the costs, there’d be a reduction in individual costs to affected families, but not a reduction in overall costs. The only thing that would change overall costs, it seems to me, would be a change in accepted, ‘appropriate’, treatments.)

Also, when they speak of ‘appropriate services’, I get nervous. Appropriate according to who? Who decides what is and what isn’t appropriate?

If it’s insurers who decide, a bill which simply ends discrimination against anyone with an autism diagnosis isn’t necessarily going to be of that much benefit, in my opinion, to children with autism. I haven’t read the details of the Pennsylvania bill they are referring to, but I would imagine that there is a lot of political clout behind lobbying efforts to keep the ‘appropriate’ treatments defined very narrowly.

It has always seemed to me (and I will not pretend to be unbiased when it comes to Autism Speaks. Did I mention that they tried to have me arrested?), that Autism Speaks is in the business of helping anyone who stands to benefit from the plight of autistic children.

There is going to be a benefit on Comedy Central this Sunday night called Night of Too Many Stars. It is being billed as a benefit for autism education, and some of the money raised, I heard on my telly while watching the Colbert Report, will be donated to Autism Speaks. So here is what I’m seeing—and maybe my conclusions are skewed because of my bias—but what I see is the education lobby helping Autism Speaks (through a prime time Comedy Central benefit concert). Why? Call me prejudiced, but I’m thinking there is likely some quid pro quo.

I don’t understand how these charity organizations work. I only know that I don’t trust a lot of them.

[Kerbob1]

The following was captured from a form letter crafted by Autism Speaks for an action alert to push a Pa. Insurance bill. You will find the "death" sentence for innocent children is the last one in paragraph five.

We need your help to follow the House's unanimous support of HB 1150 in order to make insurance coverage for autism services a reality.

Senator Jane Orie introduced the Autism Insurance Benefit Resotration to end the discrimination in insurance coverage against children with autism and their families, by requiring insurance companies to cover essential services for individuals with autism.

The House has unanimously passed this critical legislation.

Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. When children with autism receive appropriate services they can make great gains and improve significantly. Without such services, however, the prognosis is not as good.

If all interested parties -- parents, insurers, and the Commonwealth -- share in the cost of care for individuals with autism, then everyone will see a reduction in overall costs. All Pennsylvanians will see a reduction in the need for special education programs and a reduction in long term care costs for the most severely impacted.

The Autism Insurance Benefit Restoration Bill is a common-sense and fiscally responsible way of helping families to access health care services that they are currently excluded from receiving due to their autism diagnosis. I urge you to end this blatant discrimination and enact this legislation. Thank you for your attention to this critical issue.

[Robin Nemeth]

I don’t care if you’re a DAN! parent or a BOB! parent or a DICK! parent or a JANE! parent. As far as I’m concerned, when you’re working with the people who’ll stop at nothing to silence the people they disagree with, you’re in bed with the enemy.

In the beginning, the children who were poisoned, they were poisoned by mistake. It was a stupid, obscene, ridiculously tragic mistake. It HASN’T BEEN A MISTAKE FOR MANY, MANY YEARS NOW. The children who’ve disappeared in the last decades have been TAKEN, as surely as the the children of Hamelin.

Can’t you see?? This is what got your children here, in the unique position that they are in today, in the first place.

[YG]

I was confused too. After JB's explanation now I understand.

[JB Handley]

Mari-Anne:

Without being too argumentative, it's clear from your post that you haven't a clue what you are talking about.

Autism Speaks does not acknowledge:

- That there is a true rise in autism prevalence
- That DAN! exists or that many parents are using biomedical intervention
- That children recover from autism
- That vaccines are a priority #1 funding route to assess cause

There are literally dozens of critiques on this blog about Autism Speaks -- I suggets you read some. The better question to ask is, "Why does Katie have to use a public forum to ask for things that any organization truly interested in solving the autism epidemic would already be doing?"

The answer is:

Because the people who control the funding at Autism Speaks, the Scientific Advisory Board, have a vested interest in:

- There not being a true rise in autism prevalence
- Biomedical interventio not working
- Vaccines being unrelated to autism

Their professional reputations, past statements, and in many cases their life's work depends on all this being true.

Katie's parents are not on the SAB nor do they control it.

You are the first person who I have ever heard of who is both a DAN! parent and na avid volunteer for Autism Speaks. Typically, the two do not go together.

JB

[Mari-Anne Kehler]

As a DAN! parent and avid volunteer for Autism Speaks, I find this dialogue very sad and disturbing. We should be creating connections, not dividing the community of Autism. This is as ridiculous as the Democratic party waging internal rifts...while the rest of the world laughs at how we dilute our strength to do battle for good.

Wake up! Come together and find how we can work as ONE community in service to our children and adults with autism. Focusing our energy on in-fighting is energy wasted.

It is so odd to me that Katie needs to find these public forums to address her parents. Doesn't she have their phone number?? Give them a call, have a family dinner and resolve this!

[Robin Nemeth]

Mr. Gordon,

Let Autism Speaks do their vaccinated/unvaccinated study, but I will say this—personally, it will mean nothing to me.

I know that an organization is made of of individuals and those individuals may or may not be trustworthy. But when I judge an organization as a whole I have to look at what it says and does publicly. And it will be impossible for me to ever trust this organization. I might overlook Alison Singer’s statement on the front page of the Wall Street Journal in February 2007 in which she asserted that parents of autistic children do nothing wrong “except have bad genes”. I might, if there’d been any real attempt made to publicly clarify her statement, later on.

I will never forgive what the local chapter did to me in April of last year. Autism Speaks uses the money that they raise to silence opposition, and they will do it any way they can, even if that means threatening people who are doing nothing but politely asking people on a public sidewalk if they would like information about thimerosal in vaccines.

Ms. Shari Goldberg, the Cleveland chapter president, has lied to me and lied about me on public support forums regarding this matter. When they tried to have me arrested, they made the claim that I was harassing and threatening people outside of the House of Blues. This was untrue. Ms. Goldberg later made the claim on a public support forum that an arrest attempt never occurred. This also is untrue. She’s never made any attempt to set the record straight or to apologize. And I have been denied the opportunity to post documentation

http://www.wideopenwest.com/~r_nemeth/HOB_incident_report.htm

which verifies that an arrest attempt was made on the same local support forum, AutismNE, moderated by Ms. Marian Helmick, where Ms. Goldberg has solicited funds for Autism Speaks. I’ve been given no explanation for this refusal to allow me to defend myself other than “it’s not positive and we want only posts of a positive nature here.”

I’ve written the Autism Speaks national organization regarding what’s happened to me here in Cleveland. I’ve received no response from them.

Any research supported by Autism Speaks will never be credible, in my opinion, and I will never shut up about my experiences with their organization. It’s not the amount of money that you raise as an organiztion, it’s what you do with that money, in my opinion, that matters. I’ve seen nothing from the leadership of Autism Speaks to lead me to believe that they’ve changed, or have any intention, of changing their course.

I've seen efforts on the part of the Autism Society of Greater Cleveland to promote their agenda, (if you would like further information on this I will forward to you a copy of an explanation I posted to Wade Rankin’s site) and I will no longer support the ASGC, as well. The vice president of the ASGC, Mr. Gallucci, is well aware of my treatment at the hands of Autism Speaks. He, while he tells me that he ‘respects and believes me’, also tells me that he must remain neutral and cannot shun a whole organization simply because I have some ‘issues’ with them.

I don’t really care who he chooses to shun, or to associate with. I’m having a hard time understanding though how he can respect and believe a person on the one hand, while helping to raise money for the people who lied to and about that person, and tried to have that person unjustly arrested, on the other. It doesn’t seem, to me, to be a very good way of showing respect. I’ve written to the ASGC about this and intend to write the ASA as well.

Robin Nemeth

You can’t be neutral on a moving train—Howard Zinn and System of a Down

[debra]

My husband is one of those "scientists" referred to & he has been working pro bono for the last 5 1/2 years researching how the brain works. He is currently working with low functioning children w/ autism, but as importantly is working with the parents since this is really a family if not societal issue. He has attended a DAN! convention & has spoken out about thinking outside the box. Ironically, it seems even w/ science there are some organizations that have no interest in having him educate the parents with what he has learned so far!! He will be speaking at the Autism One conference, but has come up against a wall trying to spread his knowledge in other venues (including a well known Autism magazine & a well known Autism conference). This is hard science from a world renowned university & a very passionate & smart man who has given many dedicated hours to trying to find some answers, but the community at times seems to have it's own agenda. It has been disheartening to me to see such a noble cause have such politics attached to it, and innocent children & parents suffer the consequences. Not all doctors & researchers are alike! Some, like my husband really do need to help these children & it will be the lucky parents who will come to know of his passion.

[Jay Gordon]

Hi--

My name is Jay Gordon and I also participated in the discussion on the Larry King Show. I was the quiet one sitting between Jenny and the two reprobates representing the AAP's pointy of view. I had been oblivious to the internecine issues between Autism Speaks and the DAN! supporters. Katie, can you address this either in this forum or by email to me? Thank you.

Jay

jay@drjaygordon.com

[Sonja West]

I agree with the person who said that Son-Rise could help. They are wonderful with these kids. My son began speaking in full sentences not long after my husband and I attended the training there. He still has physical issues that are believed to be related to the genetic problems that may be the underlying cause of his autism. We spoke to his neurologist about the vaccines and he agrees that if there seems to be a genetic link in the family, vaccinations should be withheld until after the child is 3 or even later in some cases. I do not believe that the vaccines caused my child autism, but it did make things a lot worse than may have been the case otherwise.

[Julie Obradovic]

Autism Speaks is funding a vaccinated versus unvaccinated study? Really? This is sad to say, but can we trust them to do it? That makes me nervous, not necessarily relieved....Thoughts?

[Cindy Waeltermann]

(re Melissa Ross's comment)

My sentiments exactly. If Autism Speaks has turned into such a B.S. organization, clearly run by the closed-minded ass hats at NAAR, then why don't the Wrights LEAVE? Break off? They're the only reason the walks, the fundraising, etc., are so successful. If they LEAVE, they'll solve that massive PR problem they clearly have, and actually may be able to HELP SOME PEOPLE.

[Nicole Muench Seidel]

Katie,
Thank you! I've noticed a lot of ASD kids with severe egg allergies (my daughter included) yet several vaccines are made using chick embryo. Kids should be screened, instead of just given a shot and keep your fingers crossed that the child will be okay.
I really think it would be beneficial for you to have a conversation will Raun Kaufman of the Autism Treatment Center of America {ATCA): http://www.autismtreatmentcenter.org/ I understand that you do ABA with your son and ATCA teaches the Son-Rise Program, but I believe if you and Raun put your heads together, you may find a away to effectively get the message out to parents about all treatment options; not just AS approved options. Also, though Son-Rise is a teaching modality, in the Son-Rise Startup Programs there is some discussion of GF/CF and other biomedical interventions.
Peace be with you!---Nicole (Who's daughter is blossoming thanks to the Son-Rise Program and biomeds.)

[lisa]

Keep poking at them Katie. More and more donors will figure it out when the inspiration behind starting Autism Speaks thinks they suck. Rock on - Jeffs mom.

[REnee]

Thanks Katie - once again for keeping it "real".
Mom of a vaccine injured "mito" kid.

[Anne Dachel]

As someone who's watched coverage of the controversial link between vaccines and autism for years, I
can say with complete confidence: We are winning. The truth is finally getting out. This is the genie that will
never be put back in the bottle.

The public is waking up to the potential for damage from an out-of-control vaccine schedule. While
officials refuse to address this crisis, parents are sounding the alarm everywhere. I have visions of people from the CDC
standing speechless when
Jenny McCarthy leads a rally at the capitol over unsafe vaccines. They have nothing new to tell us. To them
autism is a genetic mystery. The only thing they can say for sure is that vaccines don't cause it.

The CDC, AAP and others have had their chance. Doctors like Karp and Tayloe will go down with them.

They're worthless in the face of a health care nightmare. The voices of Jenny McCarthy, David Kirby, and
Katie Wright are addressing the issue and they're offering hope of recovery and an end to the epidemic.

Anne Dachel
Media editor AOA
Member of the Board of A-CHAMP
(Advocates for Children's Health Affected by Mercury Poisoning)

[Beth]

Katie,

You have been my hero since going on Oprah and so bravely telling the world your vaccine autism story. I thought I'd never see the day when a media outlet anywhere would give this story a bit of coverage given the billions in pharma advertising each year. Thanks to your connections (i.e. your mom and dad) you got the ball rolling, and NOW, Jenny is at the plate and knocking triples and homeruns each time and here you've come back to bat with another solid hit with this writing. While I understand where your parents' critics are coming from, (lord knows Autism Speaks doesn't speak for so many), I still believe your mom, that autism did indeed "knock on the wrong door!"

My daughter suffered an immediate and prolonged vax reaction - encephalitic scream crying for days and loss of communication and eye contact beginning that same day. I am so lucky that this didn't result in autism and she is a normal, NT child today. I share with so many warrior moms the hollow feeling of having a pediatrician dismiss all my reported post-vax side effects as anecdotal - as if it didn't happen. As someone on the EOH list wrote today, "THIS HAPPENED!" and 10,000 pediatricians could stand side by side and tell me it didn't happen over and over again, but it did..it did happen and I watched in complete horror as my child changed drastically THAT DAY! Thank God I don't have any long term health or insurance or legal issues - I just share a bad vax experience with a much better outcome. Thank you for all you do!

[nhokkanen]

We cannot control what our families do and say; we can only ask questions and offer advice.

My father and brothers used Atrazine on their Wisconsin farm fields for years. Gradually the frogs' voices diminished. In southern Minnesota, schoolchildren found frogs whose deformities were linked to that chemical. Our state legislature has resisted efforts to ban Atrazine, due to strong lobbying from corn farmers.

My father died of cancer in 1991; another had tremors for years until his death this year. Last week I read about organophosphates and Parkinson's disease.

Sadly the struggle to prevent toxic exposures is internal, complicated, with change occurring at a glacial pace and only after prolonged struggle and solutions that require sacrifice.

[AnneS]

I'm pretty sure I saw an AS booth in the vendor area of the DAN conference today...

[Garbo]

Maybe they're waiting for Pharma to come up with a vaccine for curing autism. Or a way to patent those old chelation drugs so there's some profit in it for them. Seriously, don't you just know that one day after the press release where the CDC admits to all the lies, Pharma will have a press release announcing that they have the cure and it's a pill that costs $300 that you have to take every day for the rest of your life?