Almost a year ago Dr. Rob Ring became Autism Speaks new Chief Scientific Officer. I was told that this would be a new era at AS science. Dr. Ring would be introducing more innovative, original research, reducing the amount of learn the signs studies and prioritizing underserved, severely affected people, biomedical interventions and meaningful here and now treatment for all. Sounds good right?
Well first the good news. AS funded an excellent $120,000 study on wandering prevention and another really terrific study on vocational training for young ASD adults. Earlier this year, thanks the very dedicated work of an AS board member, AS also funded a highly innovative study on $100,000 study on PANDAS. .
I allowed the entire year of 2013 to pass without any public comment because I wanted to give Dr. Ring the opportunity to follow through with his proposed reforms. However, we are now eight months into Dr. Ring’s tenure, looking at the most recent slate of grants, the third grant cycle under Dr. Ring’s authority. These grants are largely disappointing and so painfully conservative in nature that I cannot remain silent. I have tried, very hard, behind the scenes, for years, to lobby for better research. No one at AS science is listening. Our ASD children and young adults deserve so much better.
In 2013 virtually ALL the Weatherstone Predoctoral Fellowships were either genetic, early intervention or brain imaging in nature. It is my understanding that Weatherstone was intended to draw innovative young investigators into the field of autism, with special emphasis on the GAP areas in ASD research. AS has saturated the field early intervention and learn the signs research with money. There is absolutely no need to continue to subsidize growth in this area. To a large degree the same problem applies towards the fields of genetics and brain imaging.
Imagine if the NIH were to subsidize more research into the dangers of smoking cigarettes, which is what is happening here.
There are already 1,295 studies on autism and brain imaging/ fMRI and at least 1,000 more in the pipeline. Simons, Cold Springs Harbor and the NIH are MORE than happy to fund this area of research, AS needs to move on. Brain imaging is all about looking at brain inflammation, we need to know what environmental triggers are CAUSING this to happen. There are over 5,000 published studies on autism and genetics. Naturally some genetics research is indeed valuable but why are most AS grants still genetic in nature? Dr Ring knows this is NOT what AS families want. There are 11,000 published studies on the signs of autism. That is e-n-o-u-g-h; there are over 6,000 studies on early intervention. Additionally there are p-l-e-n-t-y of geneticists and brain imagers in the field or autism research. Weatherstone should be subsidizing predoctoral students in the biomedical and environmental sciences fields, neglected by AS and the NIH. Weatherstone could also be supporting researchers to study the biological functions of autism via GI, autoimmune and food allergies. How refreshing that would be!
1) Preclinical Autism Consortium for Therapeutics (CA) $715,000
These consortiums appear to be a Two MILLION DOLLAR check to geneticists towards mystery drug development. Typically these studies research “core issues” (behavioral aspects- not total body autism) of autism. We cannot afford to go down the same avenues over and over again. We already tried this. AS spent 5 MILLION DOLLARS on the Fragile X /Seaside Therapeutics drug. The drug certainly helped those with Fragile X but not that the other 95% of people with autism. These rare chromosomal disorders are such a different animal; they do not translate to typical autism. Dr. Crawley mainly does genetic and behavioral research.
2) Preclinical Autism Consortium for Therapeutics (TX) $615,000
Dr. Paylor, the fundee is a genetics researcher and specializes in, you guessed it, Fragile X. There are 837 published studies on autism and Fragile X and probably 500 more in the pipeline.
3) Preclinical Autism Consortium for Therapeutics (MA) $600,000
Dr. Sahin is a genetics researcher and specializes in, naturally, Retts Syndrome and Tuberous Sclerosis research. FYI there are a total 1,070 published studies on autism / TS and Retts.
The idea that these 2 million dollar (and that is just phase 1!) genetics consortiums will lead to the creation of AS drugs is a great idea in theory, but in practice this project is a huge luxury we cannot afford. Hasn’t the Alzehimers community spent billions doing this, with no success? Too many people with ASD are suffering terribly today and we cannot and should not ask them to wait a dozen years for potential treatment drug when we have so many unstudied autism treatment options are ready to be researched right NOW.
AS could be testing the dozen or so drugs/ medicines currently in off label use in the ASD community right now! Do a clinical study into Pentasa an anti-inflammatory for GI disease- today! Do a TSO study on people with severe GI problems- today! Do a decent dietary intervention diet research towards the reduction of hyperactivity, project today! Do an IVIG project on severely immunocomprised ASD people- today! Do a TMS study on those with HF autism now!
4) Which placement for which child in urban early intervention? $447,000
Ok, I think we all know the answer to this one: the best available early intervention. There is no mystery here. The problem is $ and resources. There are 6,000 studies on the importance of early intervention. Children in urban areas need the same early intervention as children elsewhere. There is not an “urban autism.” Urban ASD children are indeed an underserved but the problem is political will and resources, not a lack of early intervention research.
5) Risk Evaluations for Latinos 300,000
On the face of this grant looks good but the fundee is: Dr. Eric Fombonne. OK, my immediate thought is, again: “Is AS science out of their mind?” In the not too distant past, Fombonne was charged with unethically acquiring AGRE parent data for an unauthorized study. Yet, Fombonne is rewarded with a huge $300,000 research project? Dr. Fombonne has long been on the record that there is no autism epidemic, no real rise at all. Additionally, Fombonne testifies, for money, against disabled children in vaccine court. What a guy, right?
Also it is it just me or is it absurd to fund a French Canadian to do research on American Latino issues. Listen, I am a dumb monolingual American. I do not speak 2 languages, but Fombonne speaks heavily affected English. Americans struggle to understand him. How on earth can he relate to Americans of Latino origin and how will THEY understand him. Come on, there is not 1 Latino American researcher who could do this work? This seems ridiculous on so many levels.
6) The Endless Learn the Signs Early Intervention Research of 2013
Social Attribution for Toddlers at Risk, Parent- Child Interactions, MRIs of Pivotal Response Training (this is like the 5th AS Pivotal Response study (yes it is all behavioral), Social Rewards in Autism (dozens upon dozens of these funded)
I don’t know about you, but I have really had enough of this.
7) And finally Eye Gazing. This is inexcusable in 2013. There are already over 610 published studies on autism and eye gazing. E-n-o-u-g-h. We know a lack of eye contact is a risk factor for autism. We have known that in fact for 15 years. This has to stop and the fact that Dr. Ring funded yet another eye gazing study yesterday is embarrassing to Autism Speaks.
Guess how many studies there are on actual research priorities of ASD families?
1) Autism and GI disorders/ disease: 283 studies
GI problems something that affect almost 50% of people with ASD
2) Autism and Gastrointestinal Interventions: 2 studies
2) Regressive Autism 87 studies
This affects almost 40% of kids with autism. Isn’t anyone curious why toddlers are abruptly going mute and (in my son’s case), no longer recognizing family members and suddenly screaming all day and night?
3) Adverse Vaccine Reactions and Autism 27 studies
This happened to my child, countless now ASD children and continues to happen every %^&day. How about we actually study these kids, not just Fragile X kids?
4) Autism and Autoimmune Interventions 71 studies
There are so many sick ASD people to settle for this shameful number
5) Autism and Food Allergies 51 studies
6) PANDAS and autism 4 studies
7) Brain Inflammation and Autism 87 studies
8) IVIG and Autism 18 studies
This absolutely saved my son’s health and is desperately needed for 100s of 1,000s of suffering and sick people with autism
7) Autism and Yeast/ Fungal Infections 31 studies. Yeast overgrowth is horribly common among ASD people. It is one of the major causes of night wakefulness AS just sponsored a sleep study on the circadian rhythms of sibs. That is just silly and wasteful. We need real solutions, not nonsense research on sibs.
There were two “environmental” grants funded in the recent cycle. One is a conference about “Communicating risk factors to the public.” Please, totally absurd, a conference about how doctors should talk to families is not environmental research. We need meaningful research about actual environmental risk factors before holding a communications conference. The second “environmental” grant is for the development of an environmental research tool. It is OK, but let’s be serious this is really not the kind of environmental research AS families have been promised. Such disappointing grants.
In Part 2, I would like to discuss suggestions for reform. What researchers would you like to see AS fund? What AS research have you liked? Am I missing something about the “Autism Consortiums?” What kind of AS treatment projects would most benefit the majority of people suffering with ASD? Are you an AS parent, if so what do you think of the recent slate of funded research? What type of environmental research would you like to see funded?
Katie Wright is Contributing Editor to Age of Autism.