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.