It’s no secret that the National Autism Association is a staunch supporter of Andrew Wakefield. Mr. Wakefield, of course, is the researcher whose work on MMR and autistic children promoted the vaccine/autism link. Mr. Wakefield’s work was fraught with ethical lapses and research fraud. In short, from my perspective, Mr. Wakefield may rank as the person who has caused the most harm within the autism communities in recent decades.
Check the speaker list for the upcoming NAA conference. I’ll draw your attention to two points. First, Andrew Wakefield is scheduled to speak. Second, Autism Speaks is listed as a sponsor of the conference, sharing space with an HBOT company and a mail-order medical laboratory.
Mr. Wakefield is scheduled to speak about his next book. He has been involved with a family in Arizona who are battling child protective services. Here is the blurb on his upcoming talk:
Hoping for Perpetual Sunshine
This presentation is the subject of a new book coming out the spring of 2012. It deals with the hazards of pursuing a diagnosis of Munchausen Syndrome by Proxy (MSBP) in children with an Autistic Spectrum Disorder (ASD), particularly those with gastrointestinal (GI) disease and/or dysfunction. Specifically, it reviews the symptomatic presentation of GI disorders and, the frequency and nature of GI disease in affected children. It discusses the history of MSBP and briefly reviews alleged cases involving “factitious” GI symptoms. The main part of the talk will describe the experience of one family, deconstructing the evidence against the parents and their alleged fabrication of their children’s health issues, in order to identify not only the shortcomings of the diagnosis itself, but also the systematic problems that arise out of institutionalized ignorance. Deficiencies on the part of Social Services, Child Protective Services, the judiciary, and the medical profession, are identified and analyzed in respect of the published science on the presentation, pathogenesis, and treatment of autism.
Autism Speaks has a choice in where to spend their money and where to spend their reputation. Sponsoring a conference which brings Andrew Wakefield to speak to a segment of the autism community is not a wise choice, in my opinion.
Left Brain Right Brain 
I’d really like to know which family is the subject of the book, who the accusing medical experts were, and also why AW did not continue with his appeal. If all that is written on AoA is to be given credit it should have been open and shut. I notice that AW defenders have stopped posting here – or have I missed them?
No, I see them once in a while. They tend to persevere on one person and refuse to answer uncomfortable questions (like the existence of papers questioning Wakefield starting in 1999).
The question is why is Autism Speaks still associating with NAA? These are the same guys that mistook a a charitable organization for a pharmaceutical company just because of a similar name. An error which is equivalent to thinking the actor Harrison Ford runs the Ford Motor Company.
Wow. NAA still has that press release on their website. I would have imagined that by now it would have quietly been deleted.
Brian Morgan: At least one person from AoA is no longer welcome here. I frankly got fed up with the dishonesty of Mr. Miller. Mr. Stone, however, has recently posted comments here, for example.
I will say that of the groups promoting the vaccine-autism-epidemic failed idea, the NAA is the one that occasionally supports ideas that may actually be of some benefit. Too bad they throw most of their effort and credibility away.
ORAC, your opinion doesn’t carry much weight, in fact your opinion is bordering on stupidity with all the evidence pointing to vaccines as the culprit to the mass brain damaged children nationwide, as you can see the word is out, and there is no turning back the fact that vaccines do more harm than good. All you could do at this point is protect your profits, and Big Pharma’s the best way you know how, that is of course through lies deception, and pseudo science which ends up being retracted after your Big Pharma reaps in the billions.
joejoe,
name’s not ORAC. I make no profits from this. Not even in the medical world at all. Just an observation: other than your mistakes, your comment is devoid of any content. Perhaps if you could move just a step away from a reliance on conspiracy theories a real conversation could be had.
[chris say] An error which is equivalent to thinking the actor Harrison Ford runs the Ford Motor Company.
he doesnt!? i thought he took over when gerald ford died…
nice/appropriate analogy…to a less humorous, more troubling, item: wakefield is still around and making bucks off our children and adult friends…sick, sick, sick, society and advocate groups…
OTOH, do they have point…is there a connection…a gene trigger (whatever) maybe…
stanley seigler
joejoe – are you spoofing the quacks and fraudsters who can’t tell the difference between a blog run by parents of autistic children, and a blog run by a doctor, or are you actually that confused?
Perhaps joejoe was the one who wrote the press release with the mistaken notion that the charitable organization was part of the pharmaceutical. Makes sense if he has trouble reading Sullivan’s name at the top of this article next to the word “Author.” :-p
I was thinking about Wakefield and his deluded AoA supporters (think Galileo Award!) this morning as I read the article linked below. It turns out that by strenuosuly working to decrease the uptake of MMR (in addition to causing an increase in measles-associated adverse events) Wakefield and friends likely have caused more cases of ASD by reducing uptake of the rubella component of the MMR vaccine.
The authors noted: “Despite claims that MMR vaccination causes autism, research does not support this association. These claims are also ironic in light of our results, which demonstrate that MMR vaccination (through the rubella component of the vaccine) actually prevents cases of autism and other ASDs through the prevention of [Congenital Rubella Syndrome].
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3123590/?tool=pubmed
@ joejoe, you didn’t get the memo, did you?
Sullivan’s not Orac, Sullivan is Bonnie Offit.
[/snark]
As confounding as it is to see that people are giving a disgraced, dishonest man more speaking time, I can’t get past the article title- “Hoping for Perpetual Sunshine.” Why do these people want such a thing? Rain and clouds have their benefits too.
I asked Autism Speaks about this directly, they said they have supported a range of autism organizations’ conferences and events, but don’t develop or endorse the content of said events.
The NAA community are largely comprised of parents of severely and medically affected children. This population has been all but invisible to mainstream researchers. Too many of our kids are utterly incapacitated by GI pain. My son can barely speak but points to his tummy and says, “hurt.” So few pediatric GIs want to treat these kids, it is hard, hard work and most fear the controversy.
So if you do not experience the kind of pain my son lives with- great! I am thrilled for you. But
Mom of sick boy,
does any of that excuse supporting Andrew Wakefield, a man found guilty of multiple ethical lapses involving disabled children?
Not in my book.
Can you point to anything Mr. Wakefield did in terms of advancing the treatment of GI complaints? He had some experimental therapy which didn’t work (but that he tried without ethical approval on a disabled child). Anything else?
No, Mom of sick boy, my son does not have severe GI pain. He has a severe heart condition, which is different. So he sees a cardiologist. When he was younger he had issues with seizures, so he saw a neurologist.
Each kid is different, and sometimes their medical issues change.
It also happens to kids who do not have autism.
[shannon say] I asked Autism Speaks about this directly, they said they have supported a range of autism organizations’ conferences and events, but don’t develop or endorse the content of said events.
COMMENT
“have supported…don’t endorse”…why play words games…if they support. they endorse…at least in the minds of many fans.
failure to condemn is also an endorsement of kind…eg, ASA has yet to condemn JRC (if wrong pls advise).
just as some fans of ASA use the fact ASA has not condemned JRC…so JRC cant be all bad…and;
has AS ever condemned wakefield…so perhaps AS fans say, “he cant be all bad”…and that AS put their name on a program turns “not all bad”…to “who knows, maybe he’s right”
stanley seigler
Why the need to censor?
AS sponsors dozens of hugely different events.
Most families w severe kids do not like fact AS sponsors Alex Plank videos or some of the retrograde speakers at IMFAR- some speak about treating sick ASD kids w electric shocks.
Wakefield treats no patients and gets no grant $ from AS.
Whether you hate him or love him GI disease is real – and if you don’t have it you may be missing the point here. Why not come to the NAA mtg meet these families and judge for yourself in person.
Severe end of spectrum,
I have ample education, every day, on the needs of autistics with great challenges.
Quite frankly, if I had a kid with severe GI disease, I would be even more upset at the way Mr. Wakefield bungled the topic.
And, as already pointed out, my article is not censorship, nor does it call for censorship. If Autism Speaks were to decide to not sponsor a meeting which is giving Mr. Wakefield a forum to speak, that would be their right. Their free speech. It would not prohibit Mr. Wakefield from speaking, but it would send a clear message that those who have proven themselves to be dishonest and unethical should not be welcomed into the autism communities.
Severe: If Autism Speaks is spending money to pay a corrupt quack to speak, then it’s not censorship if I decide to give to a better charity.
Shannon,
thanks for checking directly on this. Yes, AS (and any organization) does not take responsibility for everything that goes on in a function they sponsor. But, they could make a clear statement here. And I think they should. Andrew Wakefield has caused so much harm. NAA is not doing families any service by supporting him.
Kudos for AS for sponsoring NAA after all the harsh words their representatives have had for AS.
By the way, Autism Speaks includes “Callous Disregard” in their list of books on autism
http://www.autismspeaks.org/family-services/resource-library/books
Even if you believe Andrew Wakefield’s rewrite of history, what of value is there in that book for a family? It is very poorly written and doesn’t really have much to offer other than a lengthy “I didn’t do it”.
At worst Autism Speaks are helping to promote the image of a man who was found guilty of dishonesty and unethical actions. It’s not a matter of opinion, it is a matter of public record.
At best, Autism Speaks is wasting people’s time and money.
That is disappointing about Callous Disregard. I’ll ask them about that directly as well. AS seems to moving towards evidence-based practices and broader community support, including the promising research showcased at IMFAR and supporting adults with autism — direct feedback from the community is an effective and constructive way to guide them towards being the organization they should and can be. They still have a lot of baggage to eject, though, absolutely true.
I recently wrote on AS and the NAA, asking Stanley’s question, is it endorsement? It’s at the very least tacit (despite the claim they don’t), and it’s deeply disappointing to see his book on their site and the money raised by hundreds of thousands of parents going towards this conference. But, their official statement agrees with what they said to Shannon. Also, Katie Wright is on the NAA board. Whether individuals within AS might consider this sponsorship to be a mistake or not, I suspect, although I do not know, that this decision is beyond their ability to undo, even if they wanted to.
And here we have the crux of the problem: how to get anything done in the autism community if we limit memberships, how to work together, even when we disagree about things, and definitely, how to maintain our integrity as we go about working for change while being inclusive in our methods.
I could point out that this is across the board. The neurodiversity symposium was funded with facilitated communication money, but apparently only I had a problem with that, enough to openly express, at least. The ASF worked across the board with the NAA on the wandering code. Should the ASF be condemned for working with them? Was that tacit endorsement of all their other woo?
We’ll all have to find our own lines to draw in the sand and realize that those lines will be all over the place and somehow find a way to respect our individual rights to make our own minds up and act accordingly. I think that means some living with discomfort, if we really want to make change in the real world happen.
Kim, you are awesome. And I agree, working towards real change is hard; it requires a lot of processing power, a lot of reflection, a lot of synthesis, a lot of perseverance — and an eye on long-term as well as short-term goals.
Re: listing Callous Disregard, Autism Speaks pointed me to their resources section’s legal disclaimer:
“Autism Speaks maintains the Family Services Resource Guide as a service to families as a reference tool. Every effort is made to ensure listings are up-to-date. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of those listed. The resources listed on this page are not intended as a recommendation, referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Users are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism, or the provision of services related to autism.”
But I still think including Callous Disregard reflects badly upon them, and have said so. The conversation continues.
Shannon,
Thanks.
Indeed, Wakefield’s book being there does reflect badly. There’s a lot of work to be done, and offering our voices and opinions to those organizations that are receptive is part of that work. I’m not sure how we make that interface between large organizations attempting to bring all people to the table while working to keep woo out of that. It certainly makes it awkward at times.
The important thing to note is how quick AS is to respond, even if we’re less than pleased with the outcome of that response.
[kwombles say] And here we have the crux of the problem: how to get anything done in the autism community if we limit memberships, how to work together, even when we disagree about things, and definitely, how to maintain our integrity as we go about working for change while being inclusive in our methods.
COMMENT
agree and might add HOW when there are attitudes such as, “I’m not interested in giving you a platform and will not be posting your comments.”
stanley seigler.
Stanley, after dealing with months of your personal attacks against me at Science 2.0 (as well as some here), I’m not positively disposed towards you.
Science 2.0 is not my site; I did not and could not ban you from it. If you can’t see it, that’s not my doing. Would I publish comments from you at my personal blog? Depends. On FC? No. Personal attacks? No. Areas where we can work in common? Possibly. However, there’s the matter of the months of attacks against Dr. Todd and me that incline me to say not now, not ever. Personal blogs are not platforms for anyone and everyone. You want a platform, make your own blog and then feel free to not let me comment there. 🙂
[kwombles say] not now, not ever…after dealing with months of your personal attacks…I’m not positively disposed towards you…
COMMENT
sigh ohmy…”not positively disposed”…what’s a po boy to do…think i’ll go eat a worm…anyhow;
you mislead: there were no personal attacks on yo blogs…i dont know you well enough to get personal.
the attack was on your outdated, cut and paste (circa 1992-98) positions, and hyperbole…and on failure to answer specific questions.
sorry/sad you took it personally.
my observation/comment here (LBRB) was to show difference in talk v. walk…or as TXans say: hat and cattle…irony, irony.
stanley seigler
Sullivan writes:
“Mr. Wakefield’s work was fraught with ethical lapses and research fraud. In short, from my perspective, Mr. Wakefield may rank as the person who has caused the most harm within the autism communities in recent decades.”
Unfortunately, Mr. Wakefield’s work about autism may not be the only autism research “fraught with ethical lapses and research fraud.” So far, he is the only one to be caught in recent decades. In my spare time, of which I do not have enough, I am trying to investigate research fraud by the opponents of Facilitated Communication.
Still, I have a goal, set some weeks ago, to reveal my preliminary findings in six months.
By the way, I never heard about “the neurodiversity symposium was funded with facilitated communication money, but apparently only I had a problem with that, enough to openly express, at least.” What does that statement mean? I never knew there was any “facilitated communication money.”
Arthur Golden
Autism Speaks is part of the marketing branch for the pharmaceutical industry. Right or wrong Wakefield sells. Autism Speaks is basically a hate group that spreads around misinformation. Is even one person at Autism Speaks educated enough to understand the obvious fact that Autistic people are very empathetic? Temple Grandin’s exhibits far more empathy then any of the employees that collect a six figure income at Autism Speaks.
Pot, meet Kettle.
Mary Tormey, whoever she is, seems to be making a habit of disparaging Autism Speaks. She even popped up at ToddW’s post on How Not To Make A Fool of Yourself on the Internet (which had nothing to do with AS )
Oddly enough, I checked her blogger profile and the only blog she follows is “NaturalNews.” Oh, deer.
I hate autism speaks too.
Not because of big pharma. Because they’re the key bit of the big autism tragedy awareness meme, & that’s disgusting. And the plagiarism thing (irony: going over the head of an autistic author who you KNOW hates you to an NT at their publisher’s office to try to get permission to reprint something they wrote on *advocacy and agency*). And their PSAs, speaking of disgusting.
Just throwing that out there. People do have legit gripes with autismweeps.
@ Kassiane, I’m not fond of Autism Speaks either and agree that there is legitimate criticisms to be levied. However, given that Mary Tormey is an Age of Autism critter, I found it rather ironic that she should point to AS as a “hate group that spreads misinformation”. Project much?
I love autism speaks. They came into Florida, lobbied the right way, and my son’s ABA is now covered by insurance. There are a lot of kids in my state that are now getting some of the help they need and deserve, and it is absolutely because AS came in and made it happen.
– pD
@ScienceMom ahhhhh. Ew. hate group on hate group hate.
@pD So since you got what you want, spreading the meme better-dead-than-autistic (nope, not forgiving either of their big videos) and plagiarizing people while simultaneously excluding them (OH NO CANT TALK TO THE AUTISTIC ABOUT USING HER WORK AAAAHHHHHHHHH THATD BE ACKNOWLEDGING SHE’S A PERSON) is ok?
Who’s deficient in empathy again?
Kassiane,
not to divert the discussion, but your comment made me write up what I found to be a rather ironic bit of research reported recently: Rats Show Empathy, Too
Hi Kassiane –
I’m trying to appreciate your viewpoint. I am. I (think I) understand that your experiences are such that other people seem to be a large part of the problems you face. But for lots of us, that is the least of our concerns.
I think you are giving far too much weight to the videos that offend you so much. These aren’t the things that are forming people’s opinions on autism.
Everyone I work with, or am friends with, or are related to me, knows my son has autism. Not one of them, to my knowledge, has seen the videos produced by AS. I’d be shocked if more than a few had seen it.
But they have worked with me, drank with me, spent holidays with me, and saw my deterioration mirror my son’s. It was pretty clear to them that something was causing me to breakdown mentally. When my son was two, and had six or seven diarrhea diapers a day, every day, for six months, I told these people was going on at the house.
When my son was three, and broke several windows in our home by banging his head into them, the people I know also knew this, because I told them. I told them it was likely that a three year old was giving himself a concussion by banging his head, and I was powerless to stop him, because I was unable to literally have a hand on his shoulder every minute he was awake and moving.
When my son was four, and his eardrum burst because he had no way of telling us what was causing him distress, lacking even the capacity to understand nodding your head to a yes / no question (does this hurt? does your head hurt?), the people in my orbit knew what happened, again, because I told them.
If AS had never produced the videos that have you so upset, or if they’d included a hundred people with autism on their board, none of the facts of my child’s life would have changed. And the people that I know, friends, family and coworkers, would have heard exactly the same things from me, because that is what happened.. If AS had put out a video with exactly the meme you’d have liked them to push out, this wouldn’t have changed the filters through which the people I know learned about my autism experiences.
It isn’t all bad, I’ve got pictures of the little guy up and everyone who sees one comments on how beautiful he is. And he is beautiful. When he was finally potty trained, people I work with knew that too. Clearly, he is full of joy a great deal of the time.
But, every child is beautiful, and only a tiny fraction of them break windows with their heads, attack infants in car seats for crying, or do not receive medical care because they cannot understand yes/no questions. While this may not have been your experience, it is the experience of many of us, and seeing a friend or relative go through this, day in and day out, every day, is much more meaningful than something someone saw on youtube.
The videos produced by AS aren’t the problem. Everyone these days has a sister, or college roommate, or co-worker, or friend that has a child with autism. Not all of these children are affected like my son, but it is the real life interactions, and indeed, the real life effects of raising a child with autism that is forming opinions.
The changes wrought by a successful lobbying campaign to mandate insurance coverage for ABA is producing real, meaningful change in children’s lives, right now, today, and every day. That’s worth a thousand more videos on youtube, because at the end of the day, videos on youtube are a distraction drowned out by a galaxy Justin Bieber, Lady Gaga, or whatever, but a child receiving therapy is a child helped.
– pD
There is no “the” problem. The videos, and much of the message by Autism Speaks is “a” problem.
How can you be sure? How can you be sure that a different direction to their research objectives might not have paid off in a way that would be helping your child now? How can you be sure that by advocating for better services for autistics in a different way, your state might not have implemented insurance coverage sooner?
Who’s to say that by making autism speaks tone down their message, it didn’t help get the law passed?
But it is not worth expending (needlessly in my view) the dignity of people. Frankly, autism speaks should give themselves credit for being effective enough to not use those methods.
When Autism Speaks put up their first webpage, they included the message “Autism is a destructive and vexing puzzle.” The first ad-council campaign was based on ”
Every 20 minutes another family receives the devastating news that their child has autism”
Autism Speaks has been slowly changing over the past 5-6 years. As I wrote above, who’s to say that by making autism speaks tone down their message, it didn’t help get the law passed?
@Sullivan Heh. I like rats. I hope they didn’t hurt them in demonstrating their empathy (god that’d suck).
@pD Autism Speaks’ “awareness” has changed my life too. I am in the middle of a lawsuit with my school because a jackhole of a community college PE class is afraid of autistic people. He saw some autismweeps crap and decided that a former high level gymnast with visible muscle definition can’t effing climb effing rocks while tied to a rope that goes through a pully & is tied to someone else at the bottom because autism. Also hand flapping is apparently equivalent to tackling someone. Yes, it’s as ridiculous as it sounds.
Regarding their videos & other stuff? All propaganda spreads. The meme they are spreading is one of dehumanization, because that is what pity is. They are spreading pity and fear, and that isn’t ok. “Helping” people by making people fear them is unacceptable.
I’m sure your son is beautiful. Part of why I do what I do is so that he can inherit a world where it’s a bit more ok to have alternate modes of communication, where cognitive interpreters are a more normal thing (a cognitive interpreter is someone who can run interference between, say, an autistic person & people with whom it’s stressful to interact with, or who are interacting in stressful situations–I have a few who come to meetings with me bc they speak fluent Kassiane Can Currently Only Make WTF Is Wrong With You Sounds, and they can translate NT to Autisticish).
I’m all for progress (I keep saying, fix my sensory issues. please. I will do almost anything to not hear everything & see rainbows all over white surfaces). I want the best for all kids, on spectrum and off. The way to get that isn’t to fund interventions through fear. There’s a way to do it via love. No one should grow into a world that fears them.
“vaccines do more harm than
good”
Yes, joejoe, and I’m sure the souls of the thousands of children who died of measles in the wake of the MMR scare created by Mr. Wakefield are agreeing with you. Not!
Sheogorath, while joejoe makes no rational argument, in the interest of making factual statements, “thousands of children who died of measles in the wake of the MMR scare created by Mr. Wakefield are agreeing with you.” is not accurate. Thousands infected yes.
OK, thanks for the info. In my defence, however, I can’t remember when I read those articles, so I’m going to remember their exact details. Sorry.
OK, thanks for the info. In my defence, however, I can’t remember when I read those articles, so I’m not going to be able to remember their exact details. Sorry. (God grant me the ability to edit my comments for accuracy, since I doubt that anyone else will.)