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Dr. Rob Ring and What Went Wrong at Autism Speaks: Everything

Blue drain
By Katie Wright

Well, almost everything

Dr Ring’s tenure decimated AS Science. Ring chose to fund approximately 30 large studies. A small percentage of these grants are of passable value but most of Ring’s scientific choices are wasteful fiascos. Probably 5% of Ring’s grants deliver value to AS consumers. Virtually none of Ring’s grants will help people struggling with autism now. What follows are lists of the largest grants made during Dr. Ring’s tenure as AS’ Chief Scientific Officer.


EARLI                $1.6  million

Earli studies have, by and large, been a massive disappointment. EARLI/ AS studies have spent a lot of money spent on hopelessly redundant parental age research, studies on the dangers of cigarette smoking to fetuses (newsflash, I know) and maternal infections. EARLI research is not supposed to be SOLELY prenatal in focus. There are about a twenty maternal infection studies, it’s a good subject but we needed EARLI to study POSTnatal immune challenges. This is an overreaching problem w Autism Speaks science; their continual failure to study any issue remotely novel and their failure to represent consumer priorities to EARLI. No one, not 1 ASD parent wants more “old parents cause autism research.” Most ASD parents want postnatal immune research but Ring’s consistent disregard for consumer priorities were a signature of his leadership.

Ethnicity and Autism/ Screening/ Study of

Training Comm. Partners UCLA            $450,000

Screening Koreans                                      $400,000

Rural Bangladesh & Autism                     $400,000

South Central LA & Autism                      $300,000

Urban Autism Placement                         $400,000

Frenchman (Eric Fombinne) Study of Latino ASD Screening in Portland OR (the dumbest of all)


TOTAL $2, 300, 000

I leave this to the reader to judge. Nothing inherently wrong with awareness programs or educational training. The question is whether or not this should be the high financial priority it is?  Would African American Latino, Asian ASD kids benefit most from awareness programs or treatment? Who benefits most from these grants? The investigators and universities or actual families struggling w autism?

Baby Sibs

Early ID and Databases          $1, 200, 000

Amount Wasted:                      $1, 200, 000

This category is an easy call: 100% WASTE.

Virtually all AS Baby Sibs research is redundant and this money would have been better spent elsewhere. There are 11,000 studies on the baby sibs issue – total saturation.  AS Baby Sibs programs are textbook cases in diminishing returns. 10 yrs ago Baby Sibs science elicited useless information. Now 10 yrs on, AS continues to fund the same studies, resulting in almost no novel science, all the while staving more promising avenues of research- especially in biological treatment


Behavioral Interventions

Here is a list of AS sponsored behavioral intervention research:

Noise Cancellation Study, Non Verbal Relational Communication Sibling Video Modeling, Rhythm Interventions, Non Interactive Teaching of Pronouns (one of the dumbest), Telehealth, Food Flexibility Training (need diet interventions, not just “eat it” interventions), Web MCHAT, TEACH Adults update, Resilience in young ASD Adults, Face Gazing (horrific waste of $120,000!!!), Eye Tracking 4 treatment (see above $120,000!!), Parent and Child Intervention, Elopement Prevention (best one- happened solely because of parental efforts), Pysch Crisis among ASD Young Adults, Social Rewards, Trans. From Ped to Adult Care

TOTAL: $2, 705,000

$320,000 well spent

$ 2, 385,000 wasted

Sadly little here that AS families view as truly valuable or even novel. Allow the NIH to spend millions on the 100th MCHAT screening tool. We don’t need more screening tools- we need doctors to use the ones they already have, gathering dust in a drawer. Eye tracking studies are not “treatment” they are learn the sign boondoggles for psychologists. Listen, we all know the signs of autism, the problem is there are like 3 treatment options.

EU AIMS           $1,000,000


Amount Wasted:   $1,000,000

I think EU AIMS was a misguided effort to by AS and Ring to be sort of a “big man on campus” in the international world of autism research. Ring made countless trips back and forth to Europe for meetings and research ideas that never amounted to anything. EU AIMS is just the most expensive example of these European endeavors. EU AIMS is run by about 20 geneticists and psychologists who are studying genetic and social “biomakers” of people with relatively HF autism: two of the most over-studied topics of ASD science! If there is one major area of high financial investment and low practical yield it is genetic markers! Social biomarkers are neck and neck with “baby sibs” research for the highest volume redundant science. None of this will help 1 person with autism.

Brain/ Genes

Basal Forebrain, MRA Assay GABA, Y chromosome, Rat Model of Genetic Autism, Non Neural Networks, Ribosomal 6, Folate Receptor, Retts…

TOTAL    $1,4020,000

Amount Wasted: $1, 420,000

Almost all money in this category is wasted. None of this work benefits people with autism nor has it prevented one case of autism. The NIH, Simons and Cold Springs Harbor are all financing better brain science. Why AS insists on funding work already better funded elsewhere can only be explained via ego.  Ring appeared to like this science very much and liked the fact that he could fund it.

Biological TREATMENT

Dr. Brent Williams is (not well known in field but, a Ring favorite) funded to study the genetics of ASD intestines, Dr. Pat Levitt (a geneticist) funded for a “GI” study on whether or not treating constipation helps ASD people (just plain moronic and a tragic waste of almost a million $), GI microbiome biomarkers (a good one!), PANDAS, only $100k but great.  For months Ring refused to fund the PANDAS grants but was over finally over-ridden.

TOTAL    $3, 200, 000

Money Well Spent $ 1, 500, 000

Money Wasted       $1, 700, 000

PACT or Pre Clinical Thereautpetuics

PACT is Dr. Ring’s ultimate vanity project and it cost AS families over $2 million.

Again and again we see evidence of Ring’s most persistent leadership flaw: his refusal to listen to families. For years AS families asked Ring to research the medical interventions that are currently helping hundreds of thousands of ASD people, such as: Pentasa for GI inflammation, IVIG for PANDAS, Charlottes Web for intractable seizures. But no.

I can only speculate that Ring’s ego would not allow for any community collaboration or the funding of treatment research that was not his idea? I do know Ring repeatedly dismissed parental requests for research, disdainfully stating, “anecdotes are not science.”

So rather than invest money on treatments that exist NOW and treatments we know have helped many with very common ASD issues, Ring preferred to start at zero in hopes of developing “medicines” via the study of rare genetic mutation variants of ASD. It’s insane for so many obvious reasons. Ring refused to let go his belief that studying the treatment for those with rare genetic syndromes will result in treatment for the 98% of people with ASD who do not have chromosomal conditions. Ring’s hubris prevented him from learning learning from mistakes.

Despite scores of complaints from ASD families, Ring insisted on investing over a million $ of AS money into Seaside Therapeutics. The project was impossibly naïve. The premise was based on the development a drug to treat social issues affecting those with FX. Over and over again we have seen FX is a poor model for ASD but Ring refused to learn from experience. Naturally the project failed.

Despite this obvious object lesson Ring went full steam ahead with PACT- yet another massive injection of cash into the failed premise that by studying FX AS would develop medical interventions.

Bizarrely Ring decided to hire the director, an academic, of the failed Seaside project as AS’ new Medical Director. I swear this is true. Who hires someone who just led a very expensive and unsuccessful autism treatment endeavor to lead an even bigger autism treatment endeavor??? I can only guess it was more comfortable for Ring to hire a friend and academic rather than a skilled clinician with consumer affairs experience? Ring hired a clone of himself rather than a person who possesses the skills he does not have. This is a classic symptom of insecure leadership. Because of Ring’s poor choice there have been zero medical treatment advances or initiatives as AS.

Almost 4 yrs into PACT and over 2.5 million $ spent and zero progress or benefit has been achieved for ASD families.

Lessons of Dr. Ring’s Tenure at AS Science:

  • Be humble. Ring was notorious for never returning phone calls or admitting when he made a mistake. Get over yourself and focus on the bottom line- making progress for the people who serve – not your ego.
  • Don’t just say you have an open mind: Have an Open Mind. An open mind means listening respectfully to families, not being imperious and telling them you know better.
  • Failure to Sensibly Prioritize. Ring claimed he was going to make severe autism a priority and build a model ASD/ GI clinic. Instead Ring proceeded to declare the first NIH/ AS project to be an eye gazing “biomarker” project. It was almost a deliberately obtuse decision.
  • Don’t be an isolationist. Ring and his team effectively self-segregetated themselves from the autism community. They refused to attend local ASD parent sponsored symposiums or attend AS community conference, preferring exclusionary academic environments.
  • Never, never forget that you are not the victim- people struggling with autism are. I have no doubt Ring worked hard; he just did not work smart. Once we were having a heated discussion about why Ring fought the funding of a tiny PANDAS grant. I remarked that it is easy for someone who doesn’t live with PANDAS to dismiss the pain it causes our kids. Ring responded by saying that I have no idea about the “sacrifices he has made for this job.” I was blown away! Being CEO of the world’s largest and most powerful autism science and advocacy org is no sacrifice, it is a dream job countless scientists would love to have. Ring was very well compensated and held a job with enormous power and prestige. It is a privilege to have a job that is so meaningful and can so positively impact people truly suffering.

6)          Finally: environment, environment, and environment.  Despite having set aside money for an environmental science dept, Ring decided to basically close down the environmental science dept almost 3 years ago. This was truly Ring’s most appalling and short-sided decision.

Katie Wright is Contributing Editor of Age of Autism.


Patience (Eileen Nicole) Simon

Sue, Anecdotes are science! They may provide the most useful evidence for scientific analysis. Kanner wrote an article on "metaphorical" speech. The only way he was able to analyze the "metaphors" used by echolalic autistic children, was by asking the parents to explain the meanings.

Parents are "milieu researchers" with the most detailed information about our children. The disdain we receive from mainstream experts trying to identify our "autistic traits" is obscene.

Katie, Thanks again for continuing to question the authority of those who have promoted themselves into unwarranted positions of power.

Sally Nada

"Despite scores of complaints from ASD families, Ring insisted on investing over a million $ of AS money into Seaside Therapeutics. The project was impossibly naïve. The premise was based on the development a drug to treat social issues affecting those with FX. Over and over again we have seen FX is a poor model for ASD but Ring refused to learn from experience. Naturally the project failed."

What failed was the arm of the study in the Autism community that did show significant improvement on the med BUT the parents who experienced the Placebo Effect is what caused this arm of the study to fail. It was not a double-blind study. And how can I fault them for only hoping for a treatment that would help their child. STX209, a product of Seaside is still the best treatment we've ever been on.

Anna Quandt

Thank you for your question Francis.
Ten years ago I listened to Boyd Haley say "There cannot be an epidemic of a genetic disease. " Naive as I was I expected that Scientists would zero in on environmental causes of autism, and that by now they would have unraveled the complex issue of environmental triggers.

Instead, like many of you, I have spent hours trying to decipher studies that asked the wrong questions by scientists motivated by everything but science.
By now we all have Ph.D.s in "institutional corruption corporate greed." We have in a sense been diverted.

Who are the scientists looking for environmental causes? How can we read them, promote them and support them.?

John Stone

Fombonne may not be Latino but all can alway be relied on for a certain result whatever community he is working with.




Cait from Canada

Katie, thanks for the clarification; that does make sense. I have French in-laws who were very badly treated in the US during your "freedom fries" period, so perhaps am oversensitive on this issue.


Cait, sorry, I meant Frenchman not at all prejoratively! I only meant to draw attention that a native French speaker is a strange choice for a project about outreach to Latinos. It seems that a native Spanish speaker, a member of the Latino community would be the natural choice, not someone from France or Canada. If the program was about outreach to French Canadians a French person or native French speaker would be ideal. Hope this helps better explain what I meant.

Cait from Canada

I am no fan of Eric Fombonne (not Fombinne), whose research in Quebec, where I live, was clearly fraudulent. But the term "Frenchman" is derogatory and smacks of name calling. By all means, criticize his research, but there's no need to insult his nationality.


"Ring repeatedly dismissed parental requests for research, disdainfully stating, “anecdotes are not science.”"

Except they are. It was anecdotes after a wheat shortage that let to the discovery that abstaining from wheat ameliorated symptoms of celiac disease (bloated abdomen, diarrhea, malnutrition).

Fortunately a doctor was astute enough to accept the parents' observations (i.e, anecdotes) and connect the dots in a way acceptable to the medical community.

Why doctors refuse to believe so many parent reports of regression of thousands of healthy babies after "well baby appointments" with "mandated" vaccines now constitutes willful ignorance.

It is absolutely criminal that it still goes on each day. Especially when I hear of giving infants several combo shots at once--knowing the outcome of the Hannah Poling case-- I am left shaking my head that supposedly intelligent people continue to rabidly insist vaccines are safe and those of us who question that are the "anti-science" ones.


As always, Autism Speaks walks in circles, carries blue balloons, and searches for the Autism Gene ... each year, they reverse the direction of the circle, just in case they may have missed something...


Except for that one rather remarkable instance, of what can only be described as 'hyper-intuition'. When for some reason they picked South Korea, as place to send a "top" team of medical experts , who used 'gold standard' screening and diagnostic tools, to conduct a study that screened schoolchildren for autism spectrum disorder (ASD).

And wouldn't you know, they just happened to uncover an ASD prevalence of 1 in 38 children. Many of whom were in mainstream classrooms, previously undiagnosed, and receiving no services.

I realize that the CDC has nothing whatsoever to do with Autism Speaks. But how grateful must the CDC have been, to suddenly receive that 1 in 38 number from a far away place. At a time when people are starting to ask some pretty hard questions, about why the incidence of autism is so high in North America

go Trump

Hundreds of thousands are spent by AS, traveling the world trying to sell large blue lights to shine on buildings.

As always, Autism Speaks walks in circles, carries blue balloons, and searches for the Autism Gene ... each year, they reverse the direction of the circle, just in case they may have missed something...

Francis Weibel

"Are there any studies being done specifically addressing environmental causes of autism that people or organizations can donate?"

I suggest donating to this web site, 'Age Of Autism'. It accepts donations and addresses the environmental causes of autism. Their is suppose to be a PayPal button someplace where you can donate, but I cannot find it.


The medical industrial complex, I mean Autism Speaks, has now got commercials on about autism. Maybe there's still a few people who don't know there's a tsunami coming...


Dr. Rob Ring and What Went Wrong at Autism Speaks: Everything


Actually, I think everything at Autism Speaks has gone exactly as expected.

Obfuscation at it's best.

david m burd

Patience and All, It has been clear, for over a decade, that AS is a tool of Pharma and CDC, and will never be objective about vaccines' dangers.

There's no point in even asking what's going on about AS or their leadership, or spending.


Are there any studies being done specifically addressing environmental causes of autism that people or organizations can donate? I have bee asked this question.

Marcia Hinds

It is very upsetting that the thing your parents started to help our kids has just become a fundraising machine and not at all what we need it to be!


Three words:
Medical Industrial Complex.

Actually, ok, more than three because I just wanted to also say thank you so much Katie Wright for all you do!

Aimee Doyle

Thanks as always, Katie, for your insightful research and analysis. I always enjoy reading your posts.

I agree with Eileen - I also haven't had any luck getting AS to respond to me in the past. I don't do the walks, don't donate money, don't even click on their website any more. But if you have any ideas on how parents like us can make ourselves heard by AS, I would love to hear them!

I've found, that when friends and family want to donate to autism, they often gravitate toward AS - largely I think because the organization is so large and so visible. AS absorbs all the oxygen in charitable arena. Furthermore, friends and family who want to help aren't always aware of the schisms in the autism community in general, or the deficiencies of AS in particular. It's been hard to educate people.

Grace Green

Who funds this organization? Why is the CEO not answerable to anyone? I'm tempted to say we should do a study into why autistic people (and their families) are so easily conned out of their money. I've struggled with this problem all my life, and now know the answer is - just say no!

Patience (Eileen Nicole) Simon

Katie, Thank you for this discussion of AS research. How do you think parents can make themselves heard? I gave up on AS after several non-responses. My website has been there since April 2000 with my ideas about how the brain might be affected. How brain injury occurs by all of autism's many causes should be the focus of research.

At one of the more recent IACC meetings we were told that "we" are just beginning to learn about what causes autism. Wrong! Evidence of how the brain is injured by toxic substances has been available since 1881 (135 years). In PubMed lookup the translation of Wernicke by Thomson et al. Similar injury by asphyxia at birth was reported in 1959 (by Ranck and Windle).

I have submitted many comments for the next IACC meeting. Our comments submitted there go into a "Public Record," but I have little hope that Public Comments will be discussed. It is truly discouraging.

Sally Rubin


Bob Moffit

Katie's comment edited for brevity ....

"Bizarrely Ring decided to hire the director, an academic, of the failed Seaside project as AS’s new Medical Director ...... who hires someone who led a very expensive and unsuccessful autism treatment endeavor to lead a bigger autism treatment endeavor ....... this is a classic symptom of insecure leadership. Because of Ring’s poor choice there have been zero medical treatment advances or initiatives"

With the greatest respect for all Katie and her parents have done .. or .. tried to do ... to help our devastated community .. I think Ring's selection of a "failed Seaside project as AS's new Medical Director" .. was not because Ring suffers symptoms of "insecurity as a leader" .. in fact .. I believe the exact opposite .. by selecting this failed individual .. Ring exhibits "classic symptoms of narcissism" .. described by Webster's as: "self-love, excessive interest in one's own appearance, comfort, etc" .. the etc I presume .. would include arrogant disregard for opinions that dare conflict with one's own.

In other words ... Ring's choice for Medical Director may have failed .. but ... by that very failure .. he proved himself worthy of Ring's arrogant disregard for opinions he simply refused to hear.

Unfortunately .. Autism Speaks is far from the only institution in our once great country that suffers because those appointed or elected to LEAD those failing institutions .. lack the personal integrity, courage and perseverance required of LEADERSHIP.

John Stone

Thanks Katie

An interesting question remains, where is AS heading now? I see three senior officers one of whom has been with AS for a decade but neither of the other two seem to have any background in autism: one appears to be a former music industry executive.

Has the "pre competive consortium" that Ring was piloting to develop pharmaceuticals for our children been fully abandoned?

Finally, may I suggest they approach Andy Wakefield to replace Robert Ring and restore credibility?

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