Archive | Autism Science Foundation RSS feed for this section

Eric London resigns from Autism Speaks

7 Jul

Dr. Eric London has resigned from Autism Speaks. I read his resignation letter a while back, but I held off blogging it until I could confirm it was legitimate. This letter is taken from the Autism Science Foundation blog.

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely, Eric London MD

This is pretty harsh criticism of Autism Speaks, which has touted itself as a science-based organization taking direction from the research community. Instead, it appears that decisions are being made in direct opposition to their own Science Affairs Committee.

You may recall that when the IACC’s Strategic Plan was released, Autism Speaks pulled support (whatever that means) based on the lack of research into vaccines. No comment from Autism Speaks on lifespan issues, therapies or any other topic. Just vaccines.

The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere.

Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

Autism Science Foundation are blogging

28 May

Just a quickie. Autism Science Foundation are now blogging. So far there’s only one post up but already our very own Sullivan has got in there to comment. I’d love to see some autie opinion making a splash on there!

ASF also have their own Facebook Group for those who like to get their social media on. Oh yeah, lets not forget the website whilst I’m giving out link love.

Autism Science Foundation, Science and Sandwiches

14 May

May 12th saw the first ‘science and sandwiches’ day. Featuring Dr. Ami Klin of Yale who recently published in Nature, the day was session was apparently a great success.

I was heartened to see ASAN‘s Ari Ne’eman in attendance as this reinforced my opinion that ASF are determined to include autistic people and listen to an autistic agenda. Further reinforcement came from the reporting page on the ASF website:

Discussion revolved around this new work’s [Klin’s study] role in both diagnosis and treatment, as well as the importance of respecting the individuality of people with autism.

Inserts mine

Good. Very good to hear. Two thumbs up. Excellent. Round of applause. Should I go on…? No, possibly not.

Anyway, this has been a good year for autistic advocacy I think. A major website has actively sought out and employed an autistic writer for its autism pages and now what will be a major scientific force within autism is listening directly to autistic people. Long may it continue.

Autism Science Foundation: a Research based org

30 Apr

We need more quality research in autism, no doubt about that. Private organizations can fund/manage this. But, there are Research Organizations and ‘research’ organizations.

I was interested to see the new autism organization emerge–the Autism Science Foundation. Kev has already discussed introduction of the ASF.

When I saw ASF’s webpage, I was immediately drawn to the paragraph on their scientific advisory board:

ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).

There are some well-known names in there. Dr. Catherine Lord, for one, is a real heavy hitter in the autism world. There are some other names that were new to me, so I decided to do a quick check on them. One measure I use is how many papers a person has in Autism. To measure this, I used the ISI Web of Knowledge database. I searched for papers with the person in question as author and with topic=autism. I checked number of papers and number of highly cited papers. Keep in mind that not all papers get listed by ISI. But, it is one way to measure how active someone is in autism.


Dr. Emanuel DiCicco-Bloom

Six papers found in the ISI database under the topic “autism”. This out of 58 papers total, many very well cited. He is also past chair of INSAR.

Dr. Ami Klin

32 papers on autism. Six of which have been cited over 50 times. That is impressive. He has six autism papers published in 2008–so he’s currently active in research.

Dr. Harold Koplewicz

He’s at the NYU child study center. I don’t get any hits for him as an author with the subject=autism in the ISI database. He does have a long publication record, though.

You may recall his name. Dr. Koplewicz and the NYU Child Study Center was behind the “Ransom Notes” advertisement campaign that didn’t go so well.

Dr. Sharon Humiston

She is affiliated with the University of Rochester.

I don’t get any autism publications from her in my search. What I do get in a Google search is that she testified with Jeffrey Bradstreet and others in Senator Dan Burton’s hearings on vaccines and autism. She welcomed the call for research into whether MMR or thimerosal were causing autism–so claims that she doesn’t have an “open mind” don’t apply here. However, she has been very clear on the idea that there is no evidence linking vaccines to autism. She does have a number of papers on immunization, as well as a book Vaccinating Your Child: Questions and Answers for the Concerned Parent.

Dr. Eric London

I get four autism papers for Dr. London in the ISI database. One of which, The environment as an etiologic factor in autism: a new direction for research shows that this is also someone who has demonstrated an “open mind” to the the idea that environmental causes could be important in autism etiology. But, I expect he doesn’t get much credit for that in the vaccines-cause-autism world since he doesn’t like the “correct” version of environmental etiology.

Dr. Catherine Lord

46 papers on autism, with 17 papers cited over 50 times. Wow, 1/3 of her papers are very highly cited! That is impressive.

Her bio includes this statement of awards:

Lord is Chair of the Early Intervention in Autism Committee, National Academy of Science. She received the Irving B. Harris Early Childhood Lecture Award in 2004 and was a Finalist for the New York University Child Study Center Scientific Achievement Award in 2005.


Dr. Matthew State

Dr. State is from Yale. I only get 3 papers from him in my search. One of which, though, is in Nature Genetics and has been cited 178 times. If you aren’t familiar with the Nature journals, I’ll point out that these are highly prestigious journals. Suffice it to say, nothing in the “vaccines-cause-autism” research world has even come close to a journal of this caliber.

This is a pretty good group for a brand new organization–one that is still growing. We will have to wait to see what the Autism Science Foundation does, but for now it appears that, yes, there is a new research based autism organization in town.

Autism Science Foundation

20 Apr

There’s a new autism research organisation in town – the Autism Science Foundation.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.

So thats the good. And that bad? Well, consider this:

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)

I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.

Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.

As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.

Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).

In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.

But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.

This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.

All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.

Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.

Newer Entries →