Last year the Chief Science Officer of Autism Speaks made a simple and clear statement
“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.”
It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.
But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things. The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.) So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.
Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.
Rob Ring
Chief Science Officer, Autism Speaks
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
Bob Wright
Co-founder, Autism Speaks
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science? Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad. A sad move by Autism Speaks. A sad move by Bob Wright.
But I’ve already written about that. Why bring it up again now? Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
I so want Autism Speaks to be an organization I could support. And sometimes they seem to be moving in that direction. But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities. And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.
Autism Speaks pretends to be a science driven organization, but they just aren’t. The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.
First, here is a statement by Robert Ring, Chief Science Officer:
Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated. Rob Ring Chief Science Officer, Autism Speaks
In the past Autism Speaks had been sympathetic towards the idea that vaccines cause autism. More than sympathetic, some would say. Such a clear statement as above would have been unthinkable from Autism Speaks only a few years ago.
I wish they had made these statements earlier, but I am glad they are making these statements now. The vaccine hypothesis has been the most damaging idea in autism since the refrigerator mother theory. With Autism Speaks position as a well known autism organization, perhaps even fewer families will get caught in the vaccines-cause-autism trap in the future.Here’s the way the Autism Speaks vaccines and autism page looked just last year. It includes many problematic statements and concludes: “A list of publications that used VAERS information to study associations with autism can be found here“. “Here” is a link to pubmed with the search terms “vaers” and “autism”. No surprise, it’s a list that is padded out by works by Mark and David Geier. The Geiers have been performing poor research for years and have been discussed here at Left Brain/Right Brain many times.
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools. Bob Wright Co-founder, Autism Speaks
It’s a fairly stilted paragraph in my read. It comes across as though Mr. Wright is trying to appear to ride the fence while at the same time pulling back dramatically from the clear statement by Mr. Ring. Scientific research has not directly connected autism to vaccines?
Even with that, I can’t imagine that admitting that vaccines are “important” will go over well in some circles. Close circles. Even “important” is to positive a word for some. But, seriously, here we have an invention that has saved more lives that possibly any other in medical history and we get “important”?
Yes, Mr. Wright, efforts must be made to educate parents about vaccine safety. That’s what your chief science officer did. Sadly, you can’t let Autism Speaks be a science led organization.
—
By Matt Carey
Note: I accidentally published an early draft of this article yesterday.
I just got my copy of the March 2015 issue of National Geographic a couple of days ago. Imagine my reaction when I saw this cover (click to enlarge):
In case you are having trouble imagining my reaction–it includes a big THANK YOU to National Geographic.
Yes, they put “vaccinations can lead to autism” up there with “evolution never happened” and “the moon landing was fake”.
This paragraph includes references to Jenny McCarthy (anti-vaccine activist and actress Jenny McCarthy) and Andrew Wakefield’s Lancet article.
Doubting science also has consequences. The people who believe vaccines cause autism—often well educated and affluent, by the way—are undermining “herd immunity” to such diseases as whooping cough and measles. The anti-vaccine movement has been going strong since the prestigious British medical journal the Lancet published a study in 1998 linking a common vaccine to autism. The journal later retracted the study, which was thoroughly discredited. But the notion of a vaccine-autism connection has been endorsed by celebrities and reinforced through the usual Internet filters. (Anti-vaccine activist and actress Jenny McCarthy famously said on the Oprah Winfrey Show, “The University of Google is where I got my degree from.”)
Andrew Wakefield, the British former academic surgeon who fueled the MMR scare, has turned to film making as his career. Someone chose Mr. Wakefield to manage the publicity for what they termed the “CDC Whistleblower” incident. to recap that: a William Thompson from the CDC had the extreme bad judgment to approach Brian Hooker with concerns about an old MMR/autism study. Mr. Hooker is well known for his antagonistic stance on vaccines and his bad science attempting to link vaccines and autism. Mr. Hooker published a (now retracted) study based on the information given to him by Mr. Thompson at CDC. To publicize this “CDC Whistleblower” incident, Mr. Wakefield came out with probably the most over-the-top bad video I’ve ever seen. It’s basically the Plan 9 From Outer Space of mini documentaries, complete with Mr. Wakefield’s voice over claiming that the CDC are worse that Hitler, Pol Pot and Stalin. Those dictators, you see, were at least sincere in Mr. Wakefield’s view.
Well it seems Mr. Wakefield wants to expand the “CDC Whistleblower” story to a full documentary. He has an indigogo campaign to raise funds. As of now, it has collected $2,213 of his $230,000 goal.
And now he has a trailer. It is seriously worth a look. And before you read my own commentary on this one. Here, go ahead:
Thankfully it is not as long at the Hitler/Pol Pot/Stalin video so I could manage to watch it again. Because on one view I just had to say–really? Is this for real?
We start out with a shadowy figure. Presumably an actor playing the role of the whistleblower (although, physically he looks more like Poul Thorsen than Mr. Thompson).
Interspersed with video of autistic kids in severe distress, we get images of police in riot gear. Because, that’s what one does in a documentary, splice in footage that has nothing to do with the story, right?
And, lest we forget, a helicopter. Black. Has to be black. OK, it looks like only the bottom is black, but as that quick clip went by all I could think was “really? A black helicopter? ”
And in case we had any remaining thoughts that this was a documentary, enter the image of a house as seen through a sniper scope. As the sniper scope zooms in we see that the target is an African American in a wheel chair.
Perhaps this is some sort of allusion to Mr. Wakefield’s first video, the Hitler/Pol Pot/Stalin video where he claimed that the CDC was engaging in a new Tuskegee experiment. If so, why is the image of an African American female? I ask because the alleged controversy Mr. Wakefield is trying to highlight was about African American males.
The video ends with footage of parents telling us that vaccines cause autism and an actor (presumably representing the “whistleblower”) walking up some stairs. Finally, Congressman Darrell Issa is shown banging a gavel at a congressional hearing. From the start of these events, Mr. Wakefield and Mr. Hooker and their team have been calling for a congressional hearing. I do hope they sent this video (and the Hitler/Pol Pot/Stalin video) to Mr. Issa’s office. I have a feeling that since the time that Mr. Issa accepted $40,000 in donations from people seeking a congressional hearing, he’s learned a great deal and this video will further his education.
The sad part of this is the exploitative use of autistic children seen under severe distress. This exploitation does nothing to serve the very real needs of our community. Also seen towards the end are images of Avonte Oquendo, who went missing from his school and was found dead months later. Again, exploitation which does nothing to serve our communities. Mr. Wakefield is grabbing whatever film clips he can whether they are related or not to his purported story. This is the same trick he used with a previous trailer he produced, where he spliced video from the Judge Rotenberg Center into a completely different story.
If Mr. Wakefield weren’t doing so much damage to my community, his videos would be laughably bad. I’m not laughing.
When Andrew Wakefield left Thoughtful House (which has since changed it’s name and removed all mention of him from their website), he announced a new effort: the Strategic Autism Initiative. He was going to manage research into the causes of autism. That was in 2010. Now he bills himself as a video director of the Autism Media Channel. Makes one wonder how well that Strategic Autism Initiative thing worked out.
Well, we can’t tell for sure as tax forms are only available through 2012. But the trends tell us that perhaps, just perhaps, the Strategic Autism Initiative lost steam in their fundraising. Donations are way down. And a lot of money has gone into salaries and very little into actual programs.
Let’s do a little summarizing. Let’s look at trends for the money they take in (contributions) and the money that they’ve put out in salaries. The Strategic Autism Initiative pays Andrew Wakefield and Terry Arranga.
OK, you gotta hand it to Andrew Wakefield–he pulled in $623k in 3 years, basically on his name and reputation. And, he took $316k of that money, about 50%. In total, salaries accounted for 58% of what the SAI took in. The first year of the SAI (2010) was a short year, hence the low salary. Mr. Wakefield’s salary appears to be based on $270,000/year full time. Officially he was working 30hours/week in 2010 and 2011. 15 hours/week in 2012.
Notice that the contributions were way down in 2012. Still a sizable $113k, but down from the previous years.
How does the salary outlay compare to the intake over the years? Well, it was relatively low the first year (the short year) and climbed to 80% in 2011 and 100% in 2012.
Not what one would call sustainable. Well, I guess if all one does is put money into salaries, that’s sustainable. Not exactly what a charity is supposed to be, though. Which begs the question, how much money did they have on hand at the end of each year?
Yep, pay out most of your money in salary and watch your assets go down. Also gives a partial explanation for why Mr. Wakefield is only listed as working 15 hours a week in 2012–there wasn’t the money to pay him more. The SAI would be about $70k in debt had they paid him for 30 hours/week.
In 2010, they paid out $20,260 in a grant to perform a UK Somali study.
In 2011 they paid out a $25k grant to Generation Rescue for a “vax/unvax study”
In 2012 they paid out $35k in grants. One to Mr. Wakefield’s former Thoughtful House colleague Arthur Krigsman and another to the Geiers for a study using the Florida medical database.
So, let’s consider this. In three years, Mr. Wakefield managed to give out 4 grants. Total of about $80k in grants. And for that effort he was paid $316k. What’s the supposed goal of the Strategic Autism Initiative?
“…to promote research in areas of autism and neurological disorders…”
Right. Promote research. About 13% of their budget went to promoting research. And that’s before we even consider the quality of that research.
Some bright people believe Andrew Wakefield. Some wealthy people believe Andrew Wakefield. Why, I don’t know. But even those who believe in what he says may someday question whether getting $0.13 on the dollar to the cause is worth keeping Andrew Wakefield employed.
When Andrew Wakefield presented his hypothesis linking autism to the MMR vaccine in 2014 1998, he fueled a vaccine scare that is still alive today. It wasn’t until 6 years later that specifics about Mr. Wakefield’s actions were to surface. First in a newspaper story by Brian Deer (Revealed: MMR research scandal). Later that year in a BBC Channel 4 investigation: “MMR What they didn’t tell you.” I’ve never seen that Channel 4 program. Until today. Mr. Deer has placed it on YouTube. In three parts.
Part 1 introduces the topic. The MMR scare, the Wakefield 1998 Lancet paper and the press conference and the Royal Free’s video given out to the press. A discussion with an epidemiologist about the fact that there was nothing in Mr. Wakefield’s own work to support the triple MMR vaccine. Which leads us to the Wakefield patent for a substance that could be used as a vaccine–a vaccine which could only reasonably be expected to make a profit if the existing measles vaccine were considered unsafe–and as an autism “cure”.
Mr. Deer speaks with Ian Bruce, a researcher who worked with Andrew Wakefield on the patent. “The interpretation of that is quite clear to me..and that is that they have a vaccine for measles. Which presumably is an alternative to the existing vaccine.”
The thing is, the public was not told that Mr. Wakefield and the Royal Free had these commercial interests prior to Mr. Deer’s show.
Part 2 discusses the patent–the cure and vaccine aspects. The idea was that measles virus would be injected into a mouse. Those would be extracted, frozen, thawed, mixed with human cells, and injected into pregnant goats. The colostrum (part of the goat’s milk) would then form the basis of this vaccine/cure substance.
Sound like a strange idea to you? Well, Mr. Deer interviews medical experts who also think so. “the whole technique doesn’t make sense”. “It’s not credible”. “It’s strange”.
Mr. Deer tries to interview Dr. Roy Pounder, Mr. Wakefield’s former supervisor at the Royal Free. Mr. Pounder at first agrees then refuses to be interviewed.
Mr. Deer then goes to American and interviews Hugh Fudenberg, collaborator with Mr. Wakefield and co-inventor on the patent. Mr. Fudenberg at the time was charging up to $750 an hour to see and treat autistic children. He too considers Mr. Wakefield’s treatment to be unfounded. However, Mr. Fudenberg had a cure of his own, made from his own bone marrow.
Mr. Deer discusses some of the criticism of Mr. Wakefield’s work, including a statement from someone who worked in the Royal Free Hospital, including a comment that the work amounted to abuse.
Part 3 includes a discussion with Nick Chadwick, a student in Mr. Wakefield’s laboratory during the MMR/Autism research. Mr. Chadwick tested the tissues for measles virus, and found there was none in the autistic children being seen by Mr. Wakefield’s team. Also interviewed was Ian Bruce, a colleague of Mr. Wakefield’s, and also a supervisor for Nick Chadwick. Both Chadwick and Bruce are highly confident that if there were measles virus in the tissues, they would have detected it.
Mr. Deer discusses the 2000 measles outbreak in Ireland. He interviews the parents of one of the children who died in that outbreak. For those who keep saying that measles is mild, that in first world countries no one dies or is injured, here’s what a child dying of measles looks like in the first world. She took 11 months to die.
Mr. Deer then goes to America to find and try to speak with Mr. Wakefield. Mr. Wakefield was listed as “research director” for Jeff Bradstreet’s clinic in Florida, but wasn’t there. The Bradstreet clinic had a host of supplements that one could purchase to “treat” autism. Mr. Deer eventually finds Mr. Wakefield at an Autism Society of America convention. Whereupon Mr. Wakefield runs away.
By the way–Thank you ASA for no longer inviting Andrew Wakefield to speak.
This investigative report together with the Sunday Times articles earlier in 2004 made a huge impact at the time. I know as I lived through it. The retraction of interpretation published by most of Mr. Wakefield’s co-authors on the 1998 Lancet paper (since fully retracted by the journal), was a big statement that this work was not solid. Of course, Brian Deer would eventually go on to win a U.K. Press Award for his MMR journalism and Mr. Wakefield would eventually be found to have been unethical in his research and struck off the register (lose his medical license).
The embedded version below should go through all three parts in sequence.
Needless to say, as one of the book’s targets is the vaccine/autism camp and Chris mentions Age of Autism, that nest of anti-vaxers has dominated the comments with an orchestrated campaign. Here is my own attempt to stem the tide.
Those who have argued for a link between vaccines and autism adopt two contradictory positions. On the one hand we have those who point to the epidemiological studies as evidence of an autism epidemic whose growth is supposed to coincide with changes in the United States schedule for early childhood vaccinations. But when population studies fail to find a connection between vaccines and autism we get a different argument. Apparently there is a subset of genetically susceptible children that is too small to show up in population studies of vaccine safety. We have yet to hear a convincing explanation for this alleged genetic susceptibility to vaccine induced autism. But the parents who subscribe to this view are all convinced that, whatever it is, their child must have it.
It is difficult to see how this latter group could be persuaded to abandon their belief that that in their individual cases correlation does indeed equal causation. But I am at a loss to understand why they are willing to make common cause with the autism epidemicists, who are clearly and demonstrably wrong.
Regarding prevalence we have a very good idea why prevalence used to be 4 in 10000 and is now approaching 100 in 10000. In 1966 Victor Lotter carried out one of the earliest epidemiological studies in the county of Middlesex in the UK. He used a very narrow definition of autism in which only children who actively avoided human contact and engaged in elaborate repetitive behaviour qualified for diagnosis. When his students Lorna Wing and Judith Gould repeated the study in 1979 they found a similar rate of between 4 and 5 in 10000. However they also discovered a larger group who also engaged in repetitive behaviour but did not avoid human contact. However they did show difficulties in social communication and interaction. Wing and Gould defined ther problems within the triad of impairments, which also explained the aloof behaviour of the more typical Kanner type autistics. The newly identified members of the autistic spectrum numbered around 15 in 10000. Thus a simple broadening of the criteria lifted the numbers from 4 to 20 in 10000.
Lotter, Wing and Gould had all studied children excluded from mainstream education. In 1993 Stephan Ehlers and Christopher Gillberg went looking for children with the triad of impairments in mainstream education in the Swedish city of Gothenburg. They found a rate of 71 in 10000 for children with an IQ greater than 70. The children who were identified were known by their teachers to be having social and/or educational problems but the nature of their difficulties had not been recognised prior to the study.
So, as early as 1994, on the basis of epidemiological studies by Wing and Gould (1979) and Ehlers and Gillberg (1993) it was apparent that autism in all its manifestations including the classic Kanner type and the Asperger type affected at least 91 in 10000. The National Autistic Society in the UK issued a fact sheet to that effect. The modern version is available on our website.
In 15 years the figure for all autistic spectrum disorders in the UK has moved from 91 in 10000 to 116 in 10000 (Baird et al 2006). Thus it has remained flat at around 1 per cent for the whole period of the so-called autism epidemic. And that 1 percent represents the whole spectrum with perhaps a fifth to a quarter consisting of people with recognizable learning difficulties that are moderate or severe. The rest are more able.
I see no reason to doubt that the CDC estimate of 1 in 150 and the figures from recent studies that more closely approach the overall prevalence figures from the UK contain within them similar proportions of more and less able individuals. It is a shame that it has taken health and education services on both sides of the Atlantic so long to catch up with the true prevalence of autism amongst our children and begin to tailor services to meet their needs.
That still leaves those more able adults, often living a life less ordinary without the benefit of diagnosis and support, but still experiencing difficulties in their daily lives. The recent I Exist campaign by the National Autistic Society in the UK has influenced our government to take adult issues seriously
Comments are still open. Please visit and counter the collective lunacy of the anti-vaxers.
the US Government recently looked at such evidence relating to just one girl (Hannah Poling) and concluded that vaccination had contributed significantly to her autism.
As readers of this blog can probably spot, almost every word of that statement is inaccurate: impressive work, indeed. Continue reading →
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