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