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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.

ASAN: Lindt Chocolates and Autism Speaks

10 Mar

Below is a letter from ASAN’s Ari Ne’eman. Lindt Chocolates has a fundraising campaign to sponsor Autism Speaks and organization which has no autistics in prominent, decision-making positions.

Recently, Lindt Chocolates announced a fundraising campaign for Autism Speaks, an organization that excludes autistic people themselves from its decision-making, uses offensive and unethical advertising tactics based on fear and pity and raises funds for the eugenic elimination of the autism spectrum. Too often, money raised to improve our lives goes towards organizations that don’t speak for us and work against our interests. People with disabilities of all kinds have a right to be at the center of the decisions made about us, not standing at the sidelines. We’ve started an action alert to tell Lindt Chocolates that its money is better used elsewhere, with charities whose work will benefit the lives of autistic people rather than aim to eliminate us. Click here to go to our action alert or go to: http://www.change.org/autisticadvocacy/actions/view/tell_lindt_chocolates_that_autism_speaks_doesnt_speak_for_us

The action alert allows you to write your own e-mail or use a form letter already available, however, for those of you who want to write your own e-mail or can’t use the action alert for whatever reason, here are some talking points on why Autism Speaks is bad for the autism and autistic communities. Lindt Chocolate’s e-mail is here: lindt@qualitycustomercare.com

-Autism Speaks is an autism organization that claims to speak for autistic people, without a single autistic person on its board of directors or leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals and others to achieve quality of life and equality of opportunity. Autism Speaks’ exclusionary policies are an embarrassment to itself and its funders.

-Autism Speaks advertising is highly offensive to autistic people and our families, with ads that compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks’ advertising fosters pity, shame and fear, suggesting that our very lives are mistakes and burdens.

-Autism Speaks’ fundraising goes towards genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result in respect to the autism spectrum. This is an issue of discrimination, wholly separate from typical abortion politics. Money raised in the name of autistic people should go towards opportunities for quality of life, not towards our elimination. Autism Speaks research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people. This drains support from initiatives that stand to improve the quality of life of autistic people, such as services, supports and education, which Autism Speaks supports in only a tiny fraction of its massive budget.

Thank you to those who alerted us of this situation and we urge your immediate support. Together, our voices cannot be ignored. Nothing About Us, Without Us!

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

The Lindt fundraiser has already been blogged by abfh. If you know of any others, let me know and I’ll link to them here.

For example.

Media dis&dat has ASAN protests Lindt Chocolates-Autism Speaks fundraising tactics.

Change.org included this in their Monday Autism News Potpourri.

Autism And Divorce

8 Mar

What is the divorce rate among autism families?

Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children) with some sort of autism spectrum ‘disorder’ diagnosis?

Many bloggers have apparently attempted to look somewhat earnestly at the question – and they often come up empty handed:

Lisa Jo Rudy
“But so far as I can tell, having researched the topic in all the usual places plus a few more (personal connections to reearchers in the autism community), there is no basis for these claims.”

Kristina Chew
“While I have often seen the figure of 80-85% referred to, I have not found a good source for this figure.”

Patricia Robinson
“I can’t find a study that shows that rate.”

But for everyone of those who don’t turn anything up, there appears to be a glut of what looks more and more like internet urban legend similar to the following:

On Oprah
“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation’s largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have news for Autism Speaks – 100% of all marriages end, eventually.

In all practicality, there are probably way too many internet discussion forum threads, blog articles, and statements from anti-autism advocacy organizations to really quantify, so I’m not even going to pretend to try. Heck, this is probably one reason this particular urban legend persists – the fallacious logic of appeal to popularity can be strong with the masses.

Let’s just round out that fallacious logic, of truth due to popularity, with a comment from botulinum toxin injection-loving Jenny McCarthy, which is really not much more than ascribing importance to her personal experience (appeal to anecdote).

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

Source

Well if Jenny believes it, it must be true (and especially so, since she apparently said this on the Oprah show).  😉

Okay, enough already. It’s clear that there is probably a lack of real quantifiable information “out there” about divorce among families with autistic children.

However, Easter Seals (in conjunction with the Austism Society of America) did look at the question (quite recently I might add: July, 2008 – Report Published in December, 2008) as part of a larger “Living With Autism” study. You can download the report (registration required) here.

Even autism super sleuth, Kim Stagliano, over at AoA noted this ‘research’ when it dropped (apparently whining about unsurprising content):

“Click HERE to read more useless information that any parent of an autistic child would have told you for a large coffee and 15 minutes of respite time. Is this what we can expect from the partnership of ASA and Easter Seals?”

Kim obviously couldn’t be bothered with some of the report’s details, really didn’t care, or just skimmed the media story, and didn’t even read the actual report (personally, I’m voting for this possibility as likely). Of course it’s also entirely possible that Stagliano’s absence of mention about the divorce rate information in this survey, is due to lack of interest in the subject, or some other reason altogether.

Pleasantly surprising however, following the AoA post, is a small, yet more astute portion of commentary on AoA (yes, you read that correctly), authored by “Gale”:

It also sheds light on an often misreported urban legend of higher divorce rates for families with autism concluding “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.”

Good on Gale for adding a little to the story here!

So what numbers were actually reported for divorce rates by Easter Seals?

No Special Needs (N=866) 39%
ASD (N=1573) 30%

30% ??? Not only is that 25% lower than the families with no special needs children (the ‘control group’) in this survey, it’s nowhere near the mythical 80% number.

But let’s be clear here. The Easter Seals report, while perhaps interesting, is not a scientific study.

While it is a fairly large survey, and one that contains a sizeable ‘control’ group, it has problems that make it very limited in its ability to lend support for conclusions about reality.

First of all, there is an obvious likelihood of selection bias. The survey respondents were solicited via an e-mail invitation from Easter seals, ASA, or Harris Poll Online, which means the respondents were likely to be already involved (to some degree) with at least one of those organizations (enough to be on some sort of contact list), and regular internet users. The survey respondents may, or may not be truly representative of parents with ASD children. The ‘control’ group may not even necessarily be representative of the parents of children with no special needs (the U.S. divorce rate for married couples with children is probably closer to the U.S. average of 48%).

There is evidence of one possible effect of such selection bias, and that is that this survey’s demographic profiles are not consistent with the most current autism epidemiology at all. A full 55% of the parents of ASD children were reported to be parents of autistic children, as opposed to 45% of the parents whose children were diagnosed with PDD-NOS or Asperger’s. This is fairly divergent from the current descriptive epidemiology which puts Autism at about 33% of the total diagnoses, and 67% for PDD-NOS and Asperger’s combined. Such a skewing toward autism diagnoses could represent any number of things (diagnostic inconsistency for example), but I think it’s certainly possible that selection bias (specifically, “self selection”) is at play here – e.g. parents who are already connected in some way to Easter Seals or ASA, may simply be more likely to be the parents of children with an autism diagnoses, and parental participation in such groups by parents of children with PDD-NOS and Asperger’s diagnoses may be considerably less, because affiliation with such organizations simply may be a lower priority for those parents. If this is the case, it would inadvertently exclude representation of a significant portion of the question’s target parent population. If the question’s target population is not representative, is the information accurate? It’s hard to know.

In the context of a sense of scientific rigor, there just isn’t much here. Surveys, and parent reports are just that, reports. As an example, diagnoses were not confirmed with any standardized and normed instruments that I can see. And, to be fair, scientific answering of the divorce rate question wasn’t really an objective of this survey in the first place.

I realize that a skeptical look at both the urban legend of 80% or higher divorce rates and the reported lower divorce rates from the Easter Seals/ASA survey doesn’t really provide any kind of clear conclusion. There will be those who believe that anti-autism advocacy groups like Autism Speaks have some sort of authority on the subject, and they probably won’t see anything wrong with the perpetuation of what looks more like urban myth for pity. There may also be those who believe that parents of ASD children are less likely to divorce (based on this survey, or their own beliefs), ascribing some sort of family-strengthening magic to having special needs children in and of itself.

As for me, I tend to think the actual divorce rate among autism families is probably pretty close to whatever the average is for all families. All families, and all marriages, have sources of difficulty, conflict, and compromise. They all have good too. Is there any reason to think that parents of ASD children are really that much different than most parents when it comes to divorce overall, one way or the other? So far, I haven’t seen any good scientific evidence to make me think so.

Some readers may think of me as one of the Evil Neurodiverse League of Evil Bloggers, and be wondering why I wouldn’t jump on an opportunity to say that having an autistic child is some awesome family-strengthening thing that makes a man more happily married than a father with typical children. I’m sorry to disappoint in this regard – while possible, and undoubtedly true for some, the science just isn’t out there to support the notion that such a statement is applicable to couples with autistic children in general. If you were hoping for something potentially more romantic, or something as equaly tragic (and real) as an 80% divorce rate among autism parents, I recommend:

Dr. Horrible’s Sing Along Blog.

Oops! The Kirby Autism-Speaks connection.

26 Feb

David Kirby just published a piece at the Huffington Post about an Autism Speaks interview that supports the idea that we need to do research on the proposed autism-vaccine connection.

No surprises there.

I was laughing at myself on the way home from work, thinking “Heck, if I were one of the Generation Rescue crowd, I’d be claiming a conspiracy. I’d be saying, ‘looks like Generation Rescue and Autism Speaks and the rest are on a concerted effort to ramp up hype on vaccines”.

But I’m not that paranoid.

Then David Kirby posted to the EOHarm yahoo group about his Huffington Post piece.

He included an email exchange between himself and Peter Bell of Autism Speaks. [edit: Note that Peter Bell is not just anybody at Autism Speaks. He’s Executive Vice President. See the first comment below]

Oops.

Here’s Peter Bell telling David Kirby about the interview

From: Peter Bell [mailto:pbell@…]
Sent: Wednesday, February 25, 2009 5:29 PM
To: David Kirby
Subject: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

I think you will find this of interest: http://www.autismspeaks.org/science/science_news/nichd_alexander_interview.php

We just posted this on our website.

And David Kirby’s response. He’s going to blog it!

From: David Kirby [mailto:dkirby@…]
Sent: Wednesday, February 25, 2009 6:32 PM
To: Peter Bell
Subject: RE: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

Wow!

Amazing

I will write about this – thanks

DK

For some reason, Mr. Bell doesn’t want people to know that he tipped David Kirby off:

—–Original Message—–
From: Peter Bell [mailto:pbell@…]
Sent: Wednesday, February 25, 2009 7:03 PM
To: David Kirby
Subject: RE: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

You just happened to find this on our website, right? J

And Mr. Kirby agrees to keep the story…only he didn’t. He forwarded the entire exchange to the EOHarm list.

—–Original Message—–
From: David Kirby [mailto:dkirby@…]
Sent: Wednesday, February 25, 2009 7:24 PM
To: ‘Peter Bell’
Subject: RE: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

I go there often, yes!

The piece will be up in minutes

NICE JOB!

dk

Oops. Again.

I don’t really know why Autism Speaks wants to keep their connection with David Kirby a secret. I mean, it’s pretty clear that AS has vaccines as their top priority (they didn’t mention anything else about the IACC’s strategic plan).

OK, I can see why Autism Speaks would want a bit of distance between themselves and David Kirby and Generation Rescue. It can’t help fundraising efforts, for one thing to be “just another anti-vaccine autism organization”.

But one more time: Oops!

Omnibus: the decisions are decisive

13 Feb

The first autism omnibus proceeding decisions are in: MMR does not cause autism, either alone or in conjunction with thimerosal.

Having said that, I can imagine that some of my readers are already accusing me of spinning the conclusions. That’s because the spin has already been put forth that the decisions are weak on the idea of general causation. Another theme is that the decisions only pertain to the test case families. But, as we will see, those ideas are the spin.

Here is a section from the From Autism Speaks statement on the Omnibus:

Today the National Vaccine Injury Compensation Program ruled that the combination MMR vaccine — with and without the preservative thimerosal — did not contribute to three particular children’s autism.

Why did they chose to say “…three particular children’s autism” when they know full well that the point of using “test cases” is to discuss general causation?

TACA is less subtle:

The fact that it took this long for these three decisions has to mean that the vaccine injury evidence had some merit. Poor evidence would have produced a negative decision very quickly.

The fact that they took a long time to decide indicates a tough decision? Either they didn’t read the actual decisions or they are deliberately trying to muddy the waters. Seriously. The comments in the decisions are so clear, so decisive, that one just can not make the TACA statement in good conscious.

Take a look at what the special masters actually said. Granted, there are hundreds of pages of decisions and I am picking a few paragraphs out, but I think you will agree–the statements are very (very!) clear. The decisions were not close. It was not a struggle for the special masters to come to these conclusions.

From the conclusion of the Cedillo case by Special Master Hastings:

This case, however, is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories. The result of this case would be the same even if I totally ignored the epidemiologic evidence, declined to consider the video evidence, and/or excluded the testimony of Dr. Bustin. The result would be the same if I restricted my consideration to the evidence originally filed into the record of this Cedillo case, disregarding the general causation evidence from the Hazlehurst and Snyder cases. The petitioners’ evidence has been unpersuasive on many different points, concerning virtually all aspects of their causation theories, each such deficiency having been discussed in detail above. The petitioners have failed to persuade me that there is validity to any of their general causation arguments, and have also failed to persuade me that there is any substantial likelihood that Michelle’s MMR vaccination contributed in any way to the causation of any of Michelle’s own disorders.

emphasis in the original.

Take a couple of lines out, shall we? Starting with, “…not a close case”. He even emphasized it with italics.

“The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories. ”

and

” The petitioners’ evidence has been unpersuasive on many different points, concerning virtually all aspects of their causation theories, each such deficiency having been discussed in detail above. ”

This is a clear and decisive decision, not doubts about it.

From another section of the decision, this one entitled Summary concerning general causation issue

For all the reasons stated above, I conclude that the petitioners have failed completely to demonstrate that it is “more probable than not” that the MMR vaccination can be a substantial factor in contributing to the causation of autism, in individuals suffering from regressive autism or any other type of autism. To the contrary, the evidence that I have reviewed makes it appear extremely unlikely that the MMR vaccine can contribute to the causation of autism. It is clear that the causation theories themselves are weak, not just the case in specific for Miss Cedillo.

I expect fragments like “extremely unlikely” to be taken out of context.

An entire section of the decision (page 34) is titled, “I have found above that petitioners general causation theory concerning immune damage is without merit.”

As to part (1) of petitioners’ three-step theory (see previous paragraph), I have already explained in detail, at pp. 22-34 of this Decision, why I have found no merit in the petitioners’ theory that thimerosal-containing vaccines in general can damage infant immune systems.

Doesn’t bode well for the next three Omnibus test cases, does it? The second three focus on thimerosal alone.

Back to MMR, there are two more decisions. From the concluding paragraph to the Hazlehurst decision, by SM Campbell-Smith,

Having carefully and fully considered the evidence, the undersigned concludes that the combination of the thimerosal-containing vaccines and the MMR vaccine are not causal factors in the development of autism and therefore, could not have contributed to the development of Yates’ autism.

Again, for emphasis, let’s pull a phrase out: “the undersigned concludes that the combination of the thimerosal-containing vaccines and the MMR vaccine are not causal factors in the development of autism”

From the Snyder case,

To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast. The families of children with ASD and the court have waited in vain for adequate evidence to support the autism-MMR hypothesis.

Pretty strong words, but I can see some people saying that there is the indication that it is just “highly improbably” raised to the sixth power. “Highly improbably^6 is not zero!” we will hear.

From another section, specifically addressing the general causation question:

However, the problems with the case presented by petitioners for general causation are overwhelming. The quality of the petitioners’ experts paled in comparison to the world-class experts proffered by respondent. The theories petitioners’ experts advanced lacked support in both logic and research. As Dr. Ward testified, an hypothesis has a life span. An hypothesis may be biologically plausible at the time it is first advanced. As evidence accumulates, the hypothesis may be strengthened or weakened. The MMR hypothesis may have appeared biologically plausible at its inception, but the accumulating body of scientific evidence has tipped the scales decisively against it. Snyder Tr. at 975. The weight of the scientific evidence is that the measles vaccine virus plays no role in the pathogenesis or triggering of autism. I thus conclude that petitioners have failed to demonstrate that the MMR vaccine can cause autism, even in the highly circumscribed subset of children with regressive ASD and gastrointestinal symptoms.

Again, for emphasis, here is a line pulled from the above “The weight of the scientific evidence is that the measles vaccine virus plays no role in the pathogenesis or triggering of autism”

It will be frustrating to watch the spin continue. I expect to hear “The decisions weren’t really that decisive” for some time to come.

But, the fact of the matter is that these decisions are clear and, well, decisive.

This is not just a statement about the spin-factor, by the way. The vaccine lawyers have just done millions of dollars worth of groundwork for their appeal and later civil cases on the taxpayer’s dollar. The fact that the Court of Federal Claims has issued such incredibly strong decisions makes it much more difficult for those cases, especially the civil cases, to actually go to trial.

Are autism organizations acting in good faith?

19 Jan

As one might imagine, this is a follow up post to Kev’s post, Did the IACC act in bad faith?

Obviously, much damage control is ongoing right now. Some autism organizations were hoping for a document from the U.S. Federal Government indicating that vaccines might be implicated as a causal factor in autism. No surprises there. They managed to get some language and a possible research project into an early approval stage for inclusion in the IACC’s Strategic Plan.

Now, these same autism organizations are crying foul that the vaccine language was removed. Autism Speaks has pulled support for the Plan under the cover story that they are upset at the process–that a “previously voted-on decision” was revisited without “forewarning”.

Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December—would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

Bob Wright, founder of Autism Speaks, stated “Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

So, this wasn’t on the agenda, so it is a “surprise tactic” and this is why the process is “tainted”. Somehow, this just didn’t ring true to me when I read it.

Anyone else check the actual agenda? In case you don’t want to click on the link, here it is:

Time Event
8:00 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:05 Brief Introductions of IACC Members
9:10 Review and Decisions: IACC Strategic Plan for ASD Research: Introduction
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:40 Break
10:45 Continuation – Review and Desicisons: IACC Strategic Plan: Budget Recommendations
12:15 Lunch
12:45 Continuation – Review and Decisions: IACC Strategic Plan: Budget Recommendations
1:15 Review and Decisions: IACC Strategic Plan: Finalizing the Plan
2:00 Break
2:10 Open Session for Public Comment
2:30 Closing Comments and Adjournment

What are the main parts of the agenda? “Review and Desicisons: IACC Strategic Plan: Budget Recommendations” and “Review and Decisions: IACC Strategic Plan: Finalizing the Plan”

Pretty broad agenda item there. Definitely broad enough to cover revisiting the vaccine proposals. Not a “surprise tactic”, not something outside the agenda. Just an action that probably saved the Strategic Plan from being voted down.

TACA is stating that the IACC “rescinds vaccine research initiatives”. Makes it sound like there was a hard commitment to the research initiatives. There wasn’t: the Strategic Plan wasn’t finalized. They also play the “it wasn’t on the agenda” card, like Mr. Wright.

SafeMinds is stating that the action by the IACC defies “wishes of its own scientists”. No kidding, they say that. They say that it also defies the wishes of “Congress”. As Kev has already pointed out, where does the Combating Autism Act state that vaccines should be researched? (hint, it doesn’t). I guess a couple of people speaking in a Colloquy are all of Congress? Because, that’s the only place where this vaccine language is included related to the CAA–the Colloquy–a couple of short speeches given after the Act was voted upon. There were also arguments made before the CAA was voted on about vaccines, including a lot of lobbying by these same autism organizations that are now crying “foul!”

That tells this reader one very important fact: Congress specifically did not include vaccine language in the Combating Autism Act. Seriously, we likely wouldn’t have a CAA if the vaccine language was included. They wouldn’t have had the votes to get it passed. But, hey, that doesn’t make a good press release, does it?

SafeMinds has gone so far as to pull its support for the Strategic Plan. If SafeMinds’ very own Lyn Redwood would like to follow the example set by Alison Tepper Singer and resign (in this case, from the IACC), I’ve got a few really good suggestions for who could fill the seat.

But pull it all together: Autism Speaks, TACA, NAA…all these press releases are damage control. OK, that and they are jockeying for position to complain to the new U.S. administration about how they have been “marginalized”. But, are they being truthful? Are they, as supposed representatives of the “Autism Community”, using their position wisely?

Let’s face facts: the Strategic Plan was going to be voted down. The majority of the members didn’t want the vaccine language included. The options were simple: revisit the sections on vaccines now and get the Plan passed or have the Plan go down in flames now and rewrite the sections on vaccines later.

Either way, the vaccine language was going to be out.

Doesn’t make a good press release, though, does it? “We were going to lose anyway, but we want to pretend like they acted improperly”. Somehow I don’t see Generation Rescue, TACA, SafeMinds, or the NAA issuing such a simple, truthful statement.

IACC Plan has no vaccines, Alison Singer resigns from Autism Speaks

16 Jan

There was just no way I could listen in to the last IACC meeting. I have been keeping up with all the meetings, but yesterday it was not to be.

I knew it was going to be big, but it was way big. David Kirby tipped the hand when he blogged about how the Strategic Plan was going to include vaccine related research. Strange move–why blog about it before it was set in stone? Why not blog about it right after the December meeting when the language was discussed? A suspicious person would think that Mr. Kirby got wind that the vaccine language was in danger.

And, so it was. Here is a press release:

ALISON SINGER ANNOUNCES HER RESIGNATION AS EXECUTIVE VICE PRESIDENT OF AUTISM SPEAKS

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice
president of communications and awareness for Autism Speaks, today
announced that she has resigned from her position with the advocacy
organization, effective next month.

“It has been an honor and a pleasure to help to build this
organization into the preeminent autism advocacy group — the group
that has, in fact, elevated the word “autism” to the global
vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob
and Suzanne Wright for their leadership, insight, commitment and for
the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’
policy on vaccine research. Dozens of credible scientific studies have
exonerated vaccines as a cause of autism. I believe we must devote
limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism
Coordinating Committee (IACC) meeting, at which the discussion of
vaccine research was to be continued from the December meeting, at the
request of one of the public members. Knowing she might cast a vote
with which Autism Speaks might disagree, she resigned from Autism
Speaks prior to the meeting. Singer serves as a public member of the
IACC and will continue to serve until 2011. She was appointed to the
IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible
for coordinating all efforts within the Department of Health and Human
Services (HHS) concerning autism spectrum disorder, including drafting
a Strategic Plan for autism research with budgetary requirements. At
the January meeing, the IACC voted to seek input on two proposed
studies of vaccines and autism from the National Vaccine Advisory
Committee Safey Working Group (NVAC), an HHS group specifically
charged with undertaking and coordinating scientific review of the
federal vaccine safety system, prior to including the proposals as
specific objectives in the strategic plan. Singer voted in favor of
this motion.

Singer was the first professional hired by Autism Speaks when it
launched in 2005. She served as interim CEO for three months, then as
senior vice president and later as executive vice president. She also
served as a staff member of the board of directors until her
resignation. Singer has been responsible for directing the
organization’s award-winning awareness and strategic communications
programs, including its work with the Ad Council which was awarded
aprestigious “Effie” award in 2008 in recognition of the 43 percent
increase in overall autism awareness directly attributable to the
campaign. She also serves on the Executive Committee of the YaleChild
Study Center and on the board of directors of Autism Spectrum News, as
well as on numerous state and local autism advocacy committees. She
has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning
America, CBS Early Show and numerous other news programs discussing
autism issues.

“My work with Autism Speaks and within the advocacy community has been
exceptionally rewarding, and I will continue to advocate on behalf of
my daughter, my brother and the millions of others affected by autism
spectrum disorder,” said Singer.

Autism Speaks has its own press release.

NEW YORK, NY (January 15, 2009) – Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

Wow.

I have to point out something rather odd in the Autism Speaks version. Note that they claim

“The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited”

This is given as the reason why they are withdrawing their support for the Plan, by the way.

Why point this out? How did Alison Singer know the night before to resign if there was no forewarning? How did Autism Speaks accept the resignation if there was no forewarning? And, in the speculation realm, why did David Kirby blog about the vaccine provisions if there was no idea that those provisions were in danger? As I noted above, the natural time to blog it was right after the December IACC meeting, but he delayed for some time. Come on, Autism Speaks. Admit it, you are pulling support because you wanted vaccine language, not because this was a surprise.

It took guts to do what Ms. Singer did. I know I can expect comments pointing back to the Autism Speaks video that Ms. Singer participated in, but I’d like to stress: it took a lot of guts to do what she did.

Oh yeah, Autism Speaks: You don’t speak for the “autism community” any more than Generation Rescue does. You certainly don’t speak for me on this issue.

Twitter Users
You can tweet your feelings about this issue at a dedicated debate site.

Two new blogs you need to read this new year

31 Dec

You may recall, Dear Reader, that earlier this year Change.org made a big splash when they advertised for an autism blogger for their increasingly popular social action network website. From blogs all over the autism blogosphere, readers and potential authors were urged to apply, apply, apply.

Of course it goes without saying that this was in itself a political act – I doubt very much if Change.org were quite prepared for the utter deluge of applications that hit them. I have it on good authority that applications ran into the thousands and has been by far the biggest launch Change.org have held.

Age of Autism, with its usual inherent crassness, not only informed their readers of this but also posted the private home phone number of one of the owners of Change.org. As ever, the people on that side of the fence show a startling lack of good social skills for a group that believe genes play a secondary role to vaccines.

Did I apply? Yep. Did I get it? Nope. Am I happy about that? I actually am. I would’ve loved to have carried a neurodiversity message into the heart of the largest growing social action network on the web today but although I made it to the final round, I didn’t make the final hurdle. C’est la vie.

So why am I happy? Because in a burst of what can only be described as genius planning from Change.org they have decided to appoint not one, but _two_ autism bloggers.

So what? I hear you say. Well, so, the first blogger is the truly amazing Kristina Chew. Someone whos blog will be required reading. Someone who is quite firmly on the side of autistic people.

But the absolute best thing is the second blogger. Change.org decided that they would have an autism blogger who was autistic. They settled for Dora Raymaker – an ASAN Director alongside Ari Ne’eman.

This makes Change.org the very first non-autie run political (with a small p) organisation in the US to appoint an autistic person to talk about autism. Think about that. Change.org beat ASA, Autism Speaks etc to appoint an autistic person to express an autistic viewpoint.

I am very excited about these two new autism blogs. I am thrilled that these two people beat off the competition (including me) to take a pro-autistic advocacy message to the heart of this website and this new way of campaigning. Well done Kristina, well done Dora – well done Change.org

Truly, a happy new year for autism advocacy.

NB: Official launch is not until 7th Jan so the blog will be in a state of flux for awhile. Don’t go expecting the finish product. But DO GO and join! Its expected to fully OPERATIONAL however by Jan 2nd.

Autism Speaks endorsed by the United Nations

22 Dec

Its no secret that whilst there are many supporters in the US of Autism Speaks, there are equally as many who are not that keen in both the US and the rest of the world.

I’m of the ‘not that keen’ persuasion personally. I think their history of attempting to silence that voices of autistic people in the name of ‘protecting their brand’ is pretty awful. I think their film ‘Autism Every Day’ in which they set out to portray autism as an unrelenting nightmare for parents – to the extent that they appeared to cast a sympathetic eye on the murder of autistic kids – was about as bad and anti-advocacy as it can get.

I think the owners of Autism Speaks – Bob and Suzanne Wright – are ignorant of the needs of that which they seek to build – a true community of autistic people.

I think the fact that no autistic people serve on the board of Autism Speaks makes a mockery of their very name and very aims. How can you be called Autism Speaks when in fact, _no_ autistic people can speak under your regime? Their press release says they want to:

…promote the dignity, equal rights, social progress and better standards of life for individuals with autism…

Really? Here’s an idea. If you want to promote dignity, then treat autistic people with dignity – don’t assume to speak _for_ them. If you want to promote equal rights, then _give_ autistic people equal rights. Give them a position of power within your organisation from which to speak. These are the kinds of things which will _contribute_ to a better standard of life.

I find it incredible that Autism Speaks are so cynically paying lip service to any number of ideals that seem to establish them as a valid autism organisation. I have no idea what their end goal is and I have no real idea why they are going about this in such a way.

However, I want to publicly state that I have no real confidence in the Autism Speaks that the Wrights have control of. I respect the AS stance on science by and large but that is just one aspect. I have no respect for the way the Wrights comport themselves as advocates for autism and I feel strongly that all they do is pay lip service to lofty sounding ideals which will help them get what they want. I think the UN have made a bad choice here and want to bring this matter to the attention of the many of us (biomedders and ND’s – this is one issue we largely agree on) that view AS with suspicion.

I object! (Part 1)

18 Nov

If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.

I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.

But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.

I’ll be frank. Every section had something objectionable in it.

Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.

Introduction, or, “we are united”

[Letter]November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”

That’s been discussed a lot (feel free to join in) here and here.

But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).

Bullet Point (a), or “no Urgency”

[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.

What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.

Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.

Ignoring the underserved is a truly shameful position that these organizations have taken.

However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:

[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.

Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.

Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.

Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.

More to follow…

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