Bud Bundy Spread Measles for Laughs on TV. Bud... Not Ted Bundy.
Paul Offit; Fear, Intimidation and Astroturf

Autism Speaks Tells Families to Vaccinate: Katie Wright Tells Families to Learn About Robert Ring

Ring ASBy Katie Wright

Dr. Rob Ring came to Autism Speaks from Pfizer. At Pfizer, Ring worked for many years on “autism medicines.” I am unaware of any successes. Ring had no clinical or personal experience with autism. Ring had never written book or even a chapter of a book on autism. Ring had never worked for a consumer advocacy group or a non-profit.

So in light of all these non-credentials and lack of experience,Ring was the perfect choice to lead the science department of the biggest autism research organization in the world.  Obvious choice, right?  But in fairness to those who hired him, Ring has a PhD in neuroscience and presented himself as a person who knew how to bring drugs to market (an issue many in the mainstream ASD community believe is important) and someone who is open minded and eager to work with the community of ASD families. Ha-ha, that joke is on your family and mine.

Then came all the promises. I honestly don’t know if Ring was making it up as he went along or was purposely insincere? Who knows? But I do know that Ring seemed to made a lot of promises he had no intention of keeping.

A group of Autism Speaks people raised one million dollars exclusively for vaccine/ autism regression research.

Every -- single -- person who donated money into that fund specifically wanted his or her dollars to be used only for vaccine research.

Two years ago Rob said he, “had kicked the can down the road too long on the project,"  and would immediately start working with Sallie Bernard, me and a few others about choosing a study to fund. Guess what? That never happened. Instead Rob claimed that money spent on air pollution studies, old parents and other marginally environmental science “counted” as vaccine project research. Right….I call that misappropriation of funds but that’s me.

Ring promised to make severely affected ASD people a priority. We all see too many stories about ASD people getting ECT (electroconvulsive therapy), chained to beds, enduring endless self injurious behavior because their medical needs are ignored. And yes that promised was broken as well.  There has been no special focus on dealing with the excessive use of ECT or restraints against ASD people. 

Instead Ring hooked up with Spring Harbor Hospital in Maine where severely ASD people are regularly treated to ECT and are physically restrained more than any other hospital in Maine!

It is exactly that psychiatric model of autism we must move beyond. Our kids are not mentally ill. They do not need to be pumped up with anti-psychotics or chained to a bed; they need real biological/ medical help.

Two years ago Rob Ring promised to hold an ASD/ Gastrointestinal conference. This is the most prevalent and probably the most disabling medical issue affecting ASD people, yet it has received minimal attention from AS.

The last, and only, GI conference AS has was in 2009 and it was closed to the public - of course. Yes AS did sponsor 2 big GI grants this year. The good news is that one grant is excellent! It’s about the microbe and the ASD gut. The other is awful. The investigator will spend almost a million dollars to “discover” if basic GI treatment helps or does not help ASD people with GI problems. I mean could the bar be set any lower? We need novel treatment research, not nonsense. Additionally the geniuses behind this study are slated to use Miralax as an intervention. Great, more poison into these kids.

 So another promise broken, no GI conference from AS.

Oh and finally Ring promised to be engaged and collaborative with the community of ASD families. Because Ring has experience with ASD kids and their families and because no one in the AS science dept has a child with autism and because Ring has no advocacy experience of any kind this seemed kind of important. Rob agreed to meet the leaders of parent lead ASD orgs in the NYC area. We invited scientifically engaged people from Autism Action Network, ARI, SafeMinds and parents of high to lower functioning kids. In the meeting we outlined a few important issues and agreed to meet regularly. 

Well after dozens of e-mails and phone calls to Rob from these community leaders were not returned, Rob asked an AS staffer to tell the parents and researchers that there would be no more meetings, end of story. Really charming. A great way to build trust in the community.

A number of AS parents asked Rob and his team to come to the incredible  National Autism Association conference in 2011, 2012, 2013 and in 2014. This conference focuses on here and now medical interventions, environmental science- giant gaps in AS science. No dice, Ring was not interested, nor was any member of his 20 something person team. So much for open mindedness and community collaboration.

You know what does seem take up a lot of Dr. Ring’s time? Meetings! Ring seemingly holds and or attends and endless amount of meetings! Ring is frequently meeting Tom Insel, Frances Collins, the Institute of Medicine, American drug company meetings, European drug company meetings…You know what comes of these meetings – a whole lot of nothing.  Sorry let me correct myself, what really seems to come out of these meetings are endlessly vague plans to use “translational” science to “create autism medicines,” and to isolate genetic risk genes and create “personalized medicine.” Basically don’t hold your breath.  Make your own plans to help your ASD child because you are on your own scientifically.

After 4 yrs in charge of the AS scientific review process Ring has overseen the spending of over $50 million. You know which of his projects has resulted in important scientific breakthroughs for people with autism? That would be none.  If I gave you the list of amazing, brilliant studies Ring and his team rejected in favor of eye gazing grants or the 1,000th study on Fragile X you would scream. It is that bad.

So in light of spending a ton of money and delivering on almost none of his promises what has Dr. Ring decided to do? Embark on an aggressive campaign to alienate half of the ASD community by completely ignoring environmental research and by declaring HE knows, not you, whether or not your ASD child had an adverse vaccine reaction. That is correct! Ring with zero expertise in environmental science, zero expertise in toxicology, no published studies or books on autism causation and minimal actual interaction with kids like mine (the irony, I know) knows YOU ARE WRONG if you saw your child regress after and adverse vaccine reaction. Ring knows your child’s autism better than you! End of story.

I feel so much better knowing I imagined the whole thing! Obviously I was just looking for something to blame and created some pretty powerful false memories. That afternoon and evening after my toddler son received 7 vaccines and screamed for 12 hours did not eat or drink…The time he had a febrile seizure…I guess it never happened? And the continual eye and eye infections that followed… just a crazy coincidence! After the 18 month vaccines more screaming, 103 degree fever, arched back and nonstop diarrhea and loss of speech- also a figment of my imagination! If only, right?

So Dr. Ring loves impressing his pals at the NIH and the CDC. I bet Ring’s inbox is chock full of congratulatory e-mails from his pals at the NIH and CDC: Tom Insel, Francis Collins, Coleen Boyle, hardcore ASD geneticists everywhere and maybe even an old buddy Paul Offit! They praise Ring for “being brave, “ and  “for “standing up for the science!” If only Dr. Ring would have actually read all the “the science.” But no, Ring has only read CDC and pharma approved vaccine safety science. Over a year ago a couple parents and myself and AS board members asked Rob to attend a meeting about vaccine science. I handed out 10 pages of abstracts to a dozen people. Guess who was the ONLY person not to give the studies a glance and guess who was the only person who left the research on table as he exited? You got, “Mr. The science has been extensively reviewed!” Just not by him….

But do you know that Ring’s archaic views do not reflect the beliefs of many at AS staffers? Ring’s ham fisted, tone deaf statement exist in another universe from the one many AS staffers and supporters live. I have had many (unsolicited) conversations with AS staffers regarding their respective babies and vaccine safety. At every AS walks I have attended I hear parents discussing how almost every parent of an infant breaks up the vaccine schedule. It really saddens me to see all the great work my AS parents  and AS staff have done with advocacy, legislative reform, the ABLE act, insurance reform- even and getting the Pope involved in autism…yet Ring’s stubborn and prideful foolishness hurts everyone.  Along with our families, all the hard working and dedicated people who work at AS deserve better as well.

Katie Wright is a Contributing Editor to Age of Autism.

Comments

Janie Richards

Why is Autism Speaks so hush hush when you mention a cure? This makes even more sense to me...thanks Katie!

Who is William Thompson ?

David Taylor - I wonder how long NACCHO has been in existence . http://www.naccho.org/
Is the international Vaccine Resistance a problem that has been dumped on their desk ? how did that happen ?

"The history of NACCHO dates back to the 1960s, with the formation of the National Association of County Health Officials (NACHO), an independent affiliate of the National Association of Counties. As the federal, state, and local public health systems continued to expand, NACHO combined with the U.S. Conference of Local Health Officers, an organization affiliated with the United States Conference of Mayors, to form NACCHO in 1994. This unified organization more closely represents all governmental local health departments, including counties, cities, city/counties, districts, tribes, and townships. In 2001, NACCHO expanded its scope to include tribal public health agencies serving tribal communities on reservation lands. Today, NACCHO represents 2,800 local health departments."

Is the problem , that the Govt\vaccine authorities worry about the snowballing effect of the "highly educated & affluent" REFUSERS , and their ability to lead the masses away from the plan of Pharmageddon-Vaccine .

David Taylor

Katie--Thank you for the comprehensive overview of Ring. What an appropriate name. Just add "worm."

Hoever, it has been my experience in corporations that nothing of any importance happens without the knowledge and consent of those higher up.

Ring is a cog in a culture that has morphed into full-blown racket, as in racketeering. There needs to be a RICO investigation of the major players:

Yesterday I learned that the CDC funds an astroturf organization, NACCHO, whose primary purpose is political lobbying to repeal vaccine exemptions on the state level: http://bit.ly/1MnbuF5. Such repeal would, of course, enhance vaccine sales.

Add to that:
* Pharma execs on the CDC vaccine advisory board
* Vaccine patent holders and paid pharmaceutical advisers (Offit) on the CDC vaccine advisory board
* The Thomas Verstraeten/Julie Gerberding revolving door between the CDC and BigPharma
* Everyone's favorite fugitive playboy, Thorsen
* The William Thompson revelations of fraudulent data to keep vaccines sales going . . . and so on.

Since 1988 and the NVICP, this beast has been growing, gorging on outfits like Autism Speaks and its millions and minions. Now vaccines have become an official racket (a mandated product with no manufacturer liability--what could go wrong?) that should be investigated by the Feds.

Oh, wait. I'm dreaming . . .

Haim Strasbourger

It was great to read about N of One, which was posted below the appropriate blasting of the current Autism Speaks lead scientist (not that the previous one was that good either). I am very encouraged by Jill James being one of the main people in that research crew, as she is well appreciated by mainstream doctors - at times the only one quoted in regards to any useful research in this arena.

If AS don't pick up someone of her caliber, it is likely time to focus on N of One, ARI, and other groups that have it much more together than AS has been for these past several years. We need useful information for our kids, not more of the same trash that keeps coming out of outdated agencies that appear not to care about us.

mary

vaccines are bioweapons......... http://mpwhi.com/vaccine_information.htm drcarley.com vaccinefraud.com .... vaccineliberationarmy.com ... reversingvaccineinduceddiseases.com http://www.russellblaylockmd.com/

Debi

What can be done to get good researchers on the AS board?

Katie Wright

Thank you everyone. I very much appreciate your support and feedback. I really do not want to bash AS. They do tremendous good in so many realms but science is a huge disappointment. And because scientific research is the core purpose of AS, this is hugely disheartening.
I would encourage those involved with AS to stay involved but earmark you donations.
Ring is not listening to families and will not or cannot,, I don't know, make good research investments. He will make very safe, very genetic, very behavioral grants with a few token progressive grants thrown in. That just is not good enough- not by a longshot.

Ring wants to be liked and admired by peers at Simons, Cold Springs, the CDC and NIH. Your opinion, sadly, is seemingly of no consequence to him. We see this all the time, right? Autism research is tough, as tough as it gets. The average scientist or academic will always take the easy way out with autism. Additionally, people w with big egos rarely make good choices in this realm.

However, yes, there are many, many people at AS who disagree with Ring. Hopefully their views will be heard. Thanks to AoA for providing us with a place to express ourselves and connect with each other.

Jennifer

While there may be a handful of efforts made by Autism Speaks that have potential impact on the future of autism research and treatments (such as some focus on the microbiome and the role it plays in ASD), none of these efforts have resulted in any real advancements in the science or lives of families who are affected by autism.

It is time that the "torch be passed" to an organization who LISTENS to parents, is solution oriented and focuses their efforts on leading science involving the real biological mechanisms behind this terrible condition. N of One: Autism Research Foundation has done more to advance the science of autism and find real answers than any other autism foundation in existence today. As an autism parent and active member of the autism community, I strongly encourage all of you to pay attention to what N of One is doing and encourage all others to do the same.

They are the game changer that autism and our kids need!

http://www.nofone.org/#!our-approach-to-research/cee5

Shannon Johnson


Hi Katie- Thanks for your insight and your passion.

In regards to the comments above by Dave Kot:
Hi Dave. I appreciate the fact that you recognize the importance of hospitals that treat patients with autism. However, I cannot agree with your assessment of Spring Harbor Hospital as I have spent too many days there while visiting my son and have witnessed the exact opposite of what you describe.

My son was a patient at Spring Harbor Hospital. I know for a fact about the excessive use of restraints and seclusions on that unit. I've watched my son be wrapped in a blanket hold and strapped to a gurney. I've got hundreds of reports documenting the restraints that involved 5 people holding my son down on a hard floor. I've read The Joint Commission's report on Spring Harbor and how the majority of the restraints and seclusions are experienced by the youngest patients (age 1-12) in the hospital-- those on the autism unit. The Joint Commission declares that "this organization's numbers are not within the target range."
http://www.qualitycheck.org/QualityReport.aspx?hcoid=1034&x=nqig&program=Hospital&mst=Hospital-Based%20Inpatient%20Psychiatric%20Services&f=

I've read the numbers released by the federal government in 2014 putting Spring Harbor Hospital right up at the top in the nation for their excessive use of restraint and seclusion:
http://www.pressherald.com/2014/06/13/restraint-and-seclusion-of-psych-patients-run-high-in-maine-hospitals/

I've met a nurse from Maine Medical Center who worked in the recovery room of the OR-- and monitored the vitals of young patients from Spring Harbor who were recovering from their latest electro-convulsive treatment session.

I've sat across the table from the autism unit director as he told me that ECT was the only therapy that was going to treat my son's self-injurious behavior. And I've read the published paper, written by the autism unit's director at Spring Harbor, on the practice of ECT for autism:
http://www.pubfacts.com/detail/22801298/Electroconvulsive-therapy-in-an-adolescent-with-autism-and-bipolar-I-disorder.

The grant that supports Spring Harbor's research-- that comes from AS. I find it concerning that AS will fund an institution whose administration directs a culture of trauma and violence towards this community of children. http://www.autismspeaks.org/science/science-news/new-research-collaborative-study-severe-autism

http://www.springharbor.org/sphar_body.cfm?id=8594

So, yeah-- Katie speaks with accuracy about Spring Harbor Hospital. Restraints, seclusions, ECT and even chemical restraints: it's real and it is only in talking about it and acknowledging it that we can protect this community.

C Ann

This article made me cry. It is good to know there are still good people at AS, hold this @$$hole accountable!

Thank you for standing up for the parents, the witnesses, and the victims of this horrible experience. You have made my day.

Dave Kot

Katie, one of our fans made the following comments about the article, which may require clearer definitions. I've copied and pasted their comments from our http://facebook.com/faceValueComics

There is no facility in Maine called "Springhill hospital"
There is a hospital in Maine that has a DD unit but there are no patients that received ECT and there are very little use of restraints on the developmental disorders units the ECT use and restraint use are on the other units in the hospital. The doctor that works there also has a research grant for autism.
This story has a bunch of holes and not a lot of credibility I am not saying that autism speaks is a good organization because I have heard that they do misappropriate their funds but the accusations of this hospital that doesn't even exist are not true of the one that does exist.
This link shows nothing about children on the developmental disorders unit getting ECT treatments or being medicated for their autism
I know firsthand that the doctors that work at this facility on this unit are there for the children and their families and would never do anything to harm them or to give them unnecessary treatment
I also know that the hospital's use of restraint is much less on the developmental disorders unit then it is in other parts of the hospital
also for a lay person to think of restraint they think of someone being tied down, most of the time restraint is when someone is held by another person to help calm them and make sure they do not harm themselves or anyone else
Any and all restraints are done after all less invasive measures are done first there is no chance of anyone being restrained and less it is completely necessary they also frown on the use of chemical restraints at all across
this article is bunk, I would challenge the writer of this article to go to Springharbor hospital and actually interview the doctors and or the families of the patients that have been there.

Thanks in advance for clarifying, Katie!

Eileen Nicole Simon

The neurological signs of autism should be the starting point for understanding underlying brain impairments: (1) language disorder, (2) diminished level of consciousness, (3) repetitive movements, (4) oculomotor dysfunction, and (5) autonomic disturbance.

I began 50 years ago reading everything I could find on how these problems might be caused by oxygen insufficiency at birth. My first two sons suffered trauma and anoxia at birth. I will continue to point out the article on asphyxia at birth by WF Windle in the October 1969 issue of Scientific American. He provided evidence of damage to subcortical centers of the brain.

The auditory pathway and basal ganglia were prominently affected. The oculomotor nuclei were damaged in some cases. Centers of autonomic control of heart rhythm, breathing, and intestinal peristalsis are smaller and less visible sites of damage. This pattern of brain damage was first reported in 1881 by C Wernicke following toxic damage in human patients. A partial translation was published by AD Thomson et al. in 2008, and available in PubMed at
http://www.ncbi.nlm.nih.gov/pubmed/18056751

I earned a degree in biochemistry and neuroscience in 1975. I wrote to AS back in 2005, but never received a reply. I will continue to try to point out that brain damage (sadly) not genetic abnormalities should be the focus of research and prevention of autism.

Terey

Kaite you are AMAZING! A true advocate for those with autism....God bless and protect you and your child in everything you speak out for!

Sue

Here's what I posted on AS's call for "Memories" of their 10 years of "progress" -

My son suffered irreparable damage from the vaccines he received at 18 months: MMR and OPV. His diagnoses now include immune system dysfuction, GI dysfuction, encephalopathy, epilepsy and autism. Much like Katie Wright's son, his reaction to his vaccines will prevent him from ever living life independently.

What has Autism Speaks done for me or my son? NOTHING. Unless you count the aggravation AS has caused by declaring vaccines safe, denying the epidemic, partnering with pharmaceutical companies to cover up the autism symptoms, and raising money for overpaid executives rather than giving funds to families who need them.

I will never donate a penny to your organization, and I strongly discourage others from doing so as well. TACA, NAA, and TMR all work tirelessly to actually help our kids and their families. Some kids are recovering, no thanks to you. All the blue lightbulbs in the world will not help our kids.

(I'm not expecting them to publish this in their memory book...)

Mary Holland

Great piece, Katie. Thanks. I had to laugh and cry.
Mary

Benedetta

Kathy Blanco;
Decent people keep thinking other people are decent and just not getting it and will -- eventually if you present the facts to them and are patient.

That has been the logical, common sense American way.

Because they are decent caring people.

Meanwhile;
I am praying for three things right now.
Father in Heaven help my daughter find a job, and keep the health that she has recovered. Help stop my husband's seizures, and if you don't mind -- could you please send down upon the heads of Tom Insel, Coleen Boyle, and Ring a horn growing wart virus so they will stop looking like such normal, decent human being when they are really monsters so they will stop confusing decent people.

Tom Petrie

Thanks for that thorough and eye-opening article! Fifty Million Dollars in four years? Damn--we should have a cure, well, if not a cure, a pretty good idea what causes autism! Anyway, I saw a full page ad in today's paper about "Autism Awareness" from Autism Speaks. There was only one problem with this ad: It gave us awareness of nothing, except that Autism afflicts one in 88 children today. I already knew this as did your audience, I'm sure.

Tom Petrie,
Nutritionist

kathy blanco

How were your parents wrapped into this? I can't get my head around that one? My father and mother witnessed the day of infamy with my son's DPT reaction, it was undeniable what was happening...they were scared off their rockers and would never forget that day...how could you parent's ignore yours? I just don't get it?

Can't they have a news release on this and say we agree with our daughter? Have you disowned them, or is that none of my business? I just don't get it?

They have power and influence, where are they?
Scuze me for being so honestly bold...I really want to know.

My Child Regressed Too

Thank you Katie for speaking up.

Wish your parents would let their frustration in Autism Speaks' failure to research the vaccine-autism link "Ring-out" too.

John Stone

Denise

Such a misfortune I could wish on Hilary Clinton, except I wouldn't wish her on the citizens of the globe.

Denise Anderstrom Douglass

Thank you, Katie Wright. I think I would like to see you become the first woman president!

Benedetta

Katie;I am so very sorry.
I have rage for the whole system, but you and your family went into the fray an were USED.

Betrayal is what has happened to you and according to Dant'e - such go to the deepest part of hell

Meanwhile Miralax.

I have a daughter that had -- wait for it--her 9th vaccine reaction in 2012. But it never went into autism.
This ninth time - her GI track problems changed too -- She bloats - esp in her small intestines

And the medicine she uses beside a probiotics/low glycemic/no gluten diet also lives on:

IS

Lactulose.

http://en.wikipedia.org/wiki/Lactulose

Moreover, recent studies showed improved cognitive functions of cirrhotic patients with minimal hepatic encephalopathy treated with lactulose.[17]

Janet Edghill

Aloha, Katie--thanks for a (as usual) superbly written piece. Although I appreciate Autism Speaks' advocacy efforts to mandate insurance coverage, I have been baffled by the pro-vaccine stance the organization has adopted, particularly in light of its genesis following your son's vaccine injury.

Mahalo for your personal courage in telling it like it is. I hope someone at AS is listening.

John Stone

The nearest they ever got I think was the sacking of Alison Singer in January 2009 after her dupliclitous behaviour on the IACC but it didn't lead to restitution.

Bob Moffitt

@ cmo

"Has Autism Speaks always been off target or were they ok for the first few years and then somehow hijacked ? / which is common wherever there is a large pile of money..."

As I recall the enthusiasm I had for Autism Speaks in the beginning .. I always remember what I believe to have been their very FIRST attempt to reach the public ... which was a video titled "Autism Every Day" .. which can be viewed here:

http://www.youtube.com/watch?v=O0vCz2KWMMO


" .. Autism Every Day video

http://www.youtube.com/watch?v=O0vCz2KWMM0

Jeannette Bishop

Thank you. This doesn't just stop at Robert Ring though I would think. This has to go up to (and maybe higher than) whomever decided someone like him should fill this position with no apparent qualifications, except possibly (just my suspicion) some level of confidence that he would perform exactly as he has.

cmo

Thank you Katie. I would suppose if you started an organization called "Katie Speaks" you would be sued... or perhaps "Kim and Katie Speak" might work...

Has Autism Speaks always been off target or were they ok for the first few years and then somehow hijacked ? / which is common wherever there is a large pile of money...

Donna Carver

Thank you Katie! This means the world to us parents!

Nancy

Katie,
You are the best. Hold that #@$% accountable!

Ann Dunn

Thank you Katie for your article. I try to inform people not to support Autism Speaks every chance I get and this is more great info.

Jenn Kaplan

Can your parents fire him?

Anne J

I love your articles, Katie. Thank you for all you do for our community. It sickens me to know how much $ AS wastes, when it could be used for valuable research into PREVENTION. This latest news on the misappropriation of funds is disgusting. We desperately need proper research into regressive autism and vaccines.

Patty Lemer

Katie, Thank you for your passion and candor! You are a bright light in this dark time.

Jaxster

Thank you Katie for all your hard work and dedication. It is clear this Autism Speaks is just an AstroTurf for Big Pharma.

Keep reporting the truth!!!

Tara McMillan

Thankyou for telling us what an awful employee, and person this man is.
I don't support Autism Speaks because they fail to openly recognize that vaccines play a part in autism diagnosis'......

When my daughters and I spoke last year at IACC in July, I THOUGHT that maybe we could get an answer as to why nothing has been done with vaccines and autism...

But they said the same old crap.. the same old stuff.....
they could NOT even tell the truth in front of autism siblings.

I no longer have any stock in IACC or anything that comes out of anyone's mouth at the NIH or the CDC or the FDA, etc.

The time for my family has come to fight and not give up, not give in.
I've made a decision to be bolder, be stronger, and not to be a wimp when it comes to holding these CRIMINALS accountable.
Yes, I am making it a mission to see justice thru, as long as the government isn't paid off and there is at least ONE path to get justice.
I'm praying it will be done, and soon.

Tara McMillan

Bob Moffitt

"But do you know that Ring’s archaic views do not reflect the beliefs of many at AS staffers?"

It is very encouraging to read there ARE staffers at AS who do not share the archaic views of Mr. Ring.

God bless you Katie for your personal courage .. and .. perserverance .. after betrayal upon betrayal .. you refuse to wave the white flag of defeat.

The ultimate definition of a true "warrior mom".

Who is William Thompson ?

Really appreciate you writing this Katie !

It means a lot to all the parents.

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