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Strategic Plan: when should I be concerned?

5 Sep

No, I’m not asking “when should I be concerned about the Strategic Plan”. Instead, I am taking parts of the Plan and posting them here. The full Plan is 34 pages long. Don’t let that slow you down! It really isn’t that long, and I found it a good read. But, it is hard to discuss the whole thing as a blog post.

Another point I see–there are six sections.  It may be tough to sit down at one time and write a response to all six.  If you think that may keep you from commenting, follow these posts and comment as you go.  It sounds like they would prefer you to write one single email, but I am all for anything that gives them more feedback–especially feedback that encourages using a strong scientific approach to selecting research projects.

With apologies to the people who wrote the Strategic Plan, I am going to only post the sections on “Research Opportunities” and “Short Term Objectives” and “Long Term Objectives”.  Read them and ask, “Is this how I want research dollars and research time spent?”.  If so, send them email and show support for the parts you like.  If not, email them and let them know your concerns.

With that intro, for the section, “When Should I be Concerned”, we have:

Research Opportunities

• ASD screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation.

• Sensitive and efficient clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, younger and older age groups.

• ASD measures that are easy to administer and that are sensitive to incremental changes in both core and associated ASD symptoms. Such measures can be used to help track the clinical course of individuals with ASD, monitor responses to interventions, and provide information about the broader autism phenotype.

• Detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes.

• ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention.

• Protocols for genetic testing in routine clinical practice in order to identify individuals at risk for ASD. Identification of individuals with genetic variations associated with ASD will facilitate intensive studies of ASD subpopulations with shared genetic risk factors to characterize common phenotypic and biological features.


Short-Term Objectives

• Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

• Validate and improve the sensitivity and specificity of existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012.
o School aged children
o General population (vs. clinical population)

Long-Term Objectives

• Validate a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014.

• Develop five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

• Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used to assess response to intervention for individuals with ASD across the lifespan by 2016.

• Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice by 2016

Again, ask yourself, “Is this how I want research dollars and research time spent?”. If so, send them email and show support for the parts you like. If not, email them and let them know your concerns.

No, really, email the IACC

4 Sep

Kev has already noted that the IACC has opened the Strategic Plan for comments and suggestion–a “Request for Information” or RFI.

This is something to not put off–a deadline to beat, not miss.

The Draft Strategic Plan is public. It’s long (34 pages), so you might think “I’ll get around to looking it over” and, well, it’s long enough that you may never read it through entirely and miss the deadline.

Here’s another tactic: Think about what is important to you. See if it’s in the strategic plan. If you liek what you see, say so. If you don’t like what you see (or you don’t see anything), say so.

Or, if that hurdle is too high (no judgements here. If this wasn’t keenly important to me, I might wait too long and miss this), just send the email with what you think the Strategic Plan should include. (add NOT-MH-08-021 to the subject line)

If you just want to say (for example), “Yo, NIH! You guys should stick to the peer reviewed methods that work” or, “Please stress adult issues“, or “I know you are getting pressure about vaccines, please don’t cave“, that works too. (As Ms. Clark has reminded me: add “NOT-MH-08-021” to the subject line).

If you are looking for more inspiration (and something more formal), here is a draft that someone I know wrote as an intro. Consider it a template to work in forming your own message.

Please stay with the scientific method in evaluating specific parts of the Strategic Plan and its implementation. This is one of the strengths of the NIH and NIMH and should be followed in autism research.

This is especially true when it comes to the subject of vaccines. The Institute of Medicine in their report on vaccines and autism rejected the theories that vaccines cause autism and further stated, “the committee recommends that available funding for autism research be channeled to the most promising areas.” Truly, we need to insure that limited money, time and researcher resources be applied to the most promising areas. The vaccine/autism theory does not meet that standard.

The Strategic Plan allows for updates to respond to new research. The current plan to monitor the literature in case new, relevant research comes forward indicating that the autism/vaccine question should be pursued. This is the appropriate approach.

I fully realize how easy it is to put this off. I’ve been meaning to write this blog post for a week now. It took this post with the ASAN announcement about the RFI to get me to move.

Send your thoughts in an email to iacc@mail.nih.gov. The deadline is Sept. 30th. But, why wait?

[edit: added comments about NOT-MH-08-021 in the subject line.]

Go Danish!

15 Aug

If you search around the web, you can find people suggesting other vaccine schedules than that used in the “overly aggressive” United States.

One you will find, promoted by the autism/vaccine advocacy group Generation Rescue doesn’t include any coverage whatsoever for Measles Mumps or Rubella. That is scary. Just plain scary.

They have others, though. One is “Go Danish”, with this little blurb:

Comment: Denmark is a first world country based in Western Europe. Their schedule appears far more reasonable than ours. They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

They give the vaccine schedule as of December 2006. Hmmm, makes you wonder what it looks like now, doesn’t it? We’ll get to that.

Well, let’s look at the “recommended” “alternate” schedule based on the 2006 Danish schedule:

DTaP at 3, 5 and 12 months
Hib at 3, 5 and 12 months
IPV at 3, 5 and 12 months, plus 5 years
MMR at 15 months and 12 years

And, this supposedly leads to a lower autism prevalence. Take a look again–that means that giving 5 vaccines at once, three times in the first year of life doesn’t cause a high autism rate. It also means that MMR at 15 months does not cause a high autism rate.

With this on their website as a something to “consider”, shouldn’t they consider what this tells us? Again, assuming that the autism prevalence in Denmark is low, doesn’t this tell us that vaccinations given in combination, early in life, don’t cause autism “epidemics”? Isn’t it pretty clear that the MMR doesn’t cause “autism epidemics”?

The current Danish schedule is now somewhat modified from the 2006 one noted at the Generation Rescue website. They’ve added the pneumococcal conjugate vaccine (PCV) at 3, 5 and 12 months. That’s 6 vaccines at once 3 times in the first year of life.

That sounds like a lot of jabs for those little Danish kids…except that they use combination vaccines. Not just DTaP, but DTaPHibIPV. Wow, a five part combination vaccine. I don’t think this is what Generation Rescue had in mind when they suggested “Go Danish”.

They have also added the HPV (Gardasil) vaccine at age 12, but I really think the discussions of that vaccine have nothing to do with autism and just paint factions of the autism community as anti-vaccine, so I prefer to stay out of that discussion.

The combination vaccine (which I assume is fairly new) and the addition of the PCV vaccine will give groups like Generation Rescue a talking point if/when the autism counts in Denmark increase to something similar to the rest of the world.

But, let’s leave where we started, with the words of Generation Rescue, speaking about Denmark:

They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

Apparently, the Danish know that multiple vaccines don’t cause autism. If we believe Generation Rescue, it looks like Denmark has the data to show it.

Kirby, wrong on the radio

14 Aug

First there was the world tour (well, to London). Then there was the national tour (well, around a day’s drive from NYC, or thereabouts). Now, we had David Kirby, live by phone on the radio!

The talk is broken into two hours. Mr. Kirby starts at about 50 minutes into the first hour. And, he doesn’t waste time. He instantly moves into getting it wrong.

First he says that anyone who thinks that the science is on the side of saying there is no link isn’t keeping up with the science. This is because (un-supported assertion coming up) “new stuff comes up virtually daily” coming in from major universities around the world.

Well, yes, new stuff is coming in daily from major universities around the world. There’s all sorts of stuff coming in on a multitude of areas, so, I guess he’s right. But, there isn’t stuff coming in daily to support the vaccine/autism concept. Take the last 5 years. With stuff coming in virtually daily, there should be over 1,000 “stuffs” (nice that he didn’t say “research” or “papers” or “results”, but “stuff”). Did anyone else listen to the Autism Omnibus? Did you notice over 1,000 stuffs being presented, or did you, like me, hear a few studies that may or may not support the idea?

OK, that isn’t a biggie. He moves on quickly into…come on we all can all guess….that’s right! Mitochondria! And, right off the bat, he gets it wrong.

He brings up that just yesterday from the UMDF (good group from what I can see) about the research from the Newcastle and Virginia Polytechnic Institute that Kev and Kristina noted recently.

Mr. Kirby mentions that the study noted that 1 in 200 have a “DNA mutation that may confer mitochondrial dysfunction” and “..this is exactly what Hannah Poling had when she got 9 vaccines in one day.”

OK. Now the facts. The study indicates a number of specific, measurable mtDNA mutations that might lead to mitochondrial disorders. Only one mtDNA mutation has yet been found with Hannah Poling–and this is not one of those studied in the recent paper. A major piece of David Kirby’s arguments so far has been that the mtDNA mutation that Hannah Poling and her mother have is benign. The dysfunction results, according to David Kirby’s interpretation of his source, is in Hannah Poling’s nuclear DNA.

As an aside, Mr. Kirby’s stance has been that the Hannah Poling type of dysfunction is inherited from the father (an apparent misinterpretation of it’s own). I bring this up to point out even more–David Kirby knows that there are major differences between the recent study and the kids in the upcoming 30-kid study that describes children with conditions similar to Hannah Poling (with the exception of any vaccine trigger, but that gets glossed over by Mr. Kirby too).

It is worth reading this comment yesterday from Prometheus.

One thing he notes is that a number of the people identified in this study had mtDNA mutations linked to Leber Hereditary Optic Neuropathy (LHON). You don’t have to go farther than the name to realize that an “optic neuropathy” isn’t “exactly what Hannah Poling had…”

Do I dare listen to hour two?

When jobsworth's attack

10 Aug

Jobsworth: UK Slang.

It’s been a rough old time to be autistic or the parent of an autistic child just lately. You could get voted out of your classroom, or you could get thrown out of a restaurant, or for the extra special prize you could be one of some jackass DJ’s 99% of autistic kids who are faking it.

Now, not wanting to be left out, Quantas are having a go at being as obstructive and generally stupid as they possibly can to autistic people.

Three Waikato families are facing a bill of $33,000 after three dogs being brought to New Zealand to help autistic patients were banned from a Qantas flight in Los Angeles.

The families had spent two years raising funds to bring the dogs to New Zealand.

Sonya Ewens, whose six-year-old son Sloan got one of the dogs to help with his autism, said they were “devastated”, the Waikato Times reported today.

She said they were still raising the last $6000 for the original fare and the thought of another two years fundraising “is really too much.”

$33k of NZ dollars is US$23,248, CAN$24,809, UK£12,105 or €15,478. Whatever way you cut it, its a lot of money.

What is it about autism that seems to bring out the worst in people? Time and again we hear stories of people being downright cruel pretty much for no good reason. And then when the story breaks they all start a tasteless game of pass the buck. Quantas blame American Airlines blah blah blah….none of which is going to help these kids get their service dogs.

Quantas – be decent. Its money. Waive it.

Misplaced anger, or, I'd be pretty annoyed with the PSC if I were a petitioner

3 Aug

Sharyl Attkisson has recently “discovered” what those of us who have been watching the Autism Omnibus closely have known for months: Hannah Poling is not the first person with autism or autistic symptoms who has had been compensated* in vaccine court (as evidenced by Neurodiversity.com and Arthur Allen)

(*note that Ms. Poling’s case is still on going and she hasn’t been “compensated” yet.)

That said, one of the comments on Ms. Attkisson’s blog struck me. I’ll pick a bit out here, from Tim Kasemodel:

Our Government has been good at sweeping things under the rug – but the rug is no longer big enough, and great reporters such as Sharyl Attkisson are beginning to look there.

Ah, let’s see. I’ll point out, though I can’t prove, that I found other cases in the vaccine court’s history involving autism/autistic symptoms within days of David Kirby breaking the Hannah Poling story. It wasn’t hard–the government has cleverly swept these cases “under the rug” by putting them on their server in plain sight. The Chief Special Master made statements in the press about previous cases. (I need to find a good link for that, I know). My guess is that Ms. Seidel found more by doing those clever searches that got her subpoenaed (since a “mere housewife” wouldn’t be able to do computer searches, or some such nonsense).

So, we’ve established (I hope) that these were not hidden or “swept under the rug.” Given that, would you like to guess my reaction on finding this? Anger. Annoyance. Disappointment.

Yep. I was pretty pissed off. At whom? The petitioner’s steering committee (PSC).

I bet that raises some eyebrows and has a few people thinking I’m making stuff up, but it’s the cold hard truth. It bothered me. Did no one in the vast number of lawyers preparing the petitioner’s case ever do a search through the vaccine court’s cases for the keywords “autism” or “autistic”?

It’s no surprise that I think the PSC doesn’t have a case. But, I think that since the Omnibus wasn’t dismissed, the petitioner’s deserve their day in court with good representation. Missing such a simple thing as the existance of related cases doesn’t make me feel like the PSC is as good as it could be.

Hence the title–I think he anger is misplaced. The government didn’t sweep this under the rug. The PSC (petitioner’s steering committee), the autism/vaccine “advocates”, journalists (or not? I’m still trying to work that one out) like David Kirby just dropped the ball.

The fact that Sharyl Attkisson can pass this off as “news” when Arthur Allen and Neurodiversity.com have covered the idea just goes to show that the people promoting the autism/vaccine link keep dropping the ball.

As AutismNewsBeat recently noted, CBS news has discovered that people get paid for work. Actually, they seem to be demonstrating that people get paid for other people’s work. Seriously, are Arthur Allen and Kathleen Seidel getting royalty checks on this story?

Sullivan
Nikolai Ivanovich Lobachevsky Endowed Chair
LBRB School of Journalism

Yet another look at CBS's view of Offit's COI's

2 Aug

Paul Offit has been much in the news and blogOsphere lately (Say, here , here and here. Dr. Offit is a vaccine researcher and vocal supporter of vaccines. This makes him a target amongst some groups, leading to a recent example of the “investigative reporting” that CBS news’ Sheryl Attkisson brings to the public.

A big question comes up as to Dr. Offit’s conflicts of interest. Ms. Attkisson’s story brings up a few. Let’s take a look. First we have the fact that Dr. Offit holds an endowed chair:

Offit holds in a $1.5 million dollar research chair at Children’s Hospital, funded by Merck. He holds the patent on an anti-diarrhea vaccine he developed with Merck, Rotateq, which has prevented thousands of hospitalizations.

OK, simple fact check: the endowed chair is $2M, with $500,000 seed money put in by Children’s Hospital of Philidelphia and the University of Pennsylvania.

Not many people have reason to know the details of what an endowed chair is. If I didn’t know better, the above quote makes it sound like the $1.5M from Merck is something akin to a grant, giving Merck some leverage on Dr. Offit. Actually, chair endowments are basically trust funds. In this case, Merck donated $1.5M to CHOP and Penn, who manage the money independent of Merck. These institutions use the proceeds of the endowment to pay for salary and research funds for the chair holder. CHOP and Penn decide who get the chair after Dr. Offit leaves or retires. It is not “His” chair, but the institutions’.

Remember that bit about “research funds”? This is money that allows a the chair holder (Dr. Offit in this case) to do independent research. He doesn’t have to apply for grants, but has a constant supply of money. Merck doesn’t have a say in how he spends those funds.

Isn’t that a good thing? Independent researchers, not beholden to funding agencies?

So, the endowed chair is not a conflict of interest at all.

What other conflict of interest did Ms. Attkisson “unearth”? Well, she noted in the above quote that Dr. Offit is a co-inventor of a patent on a Rotavirus vaccine. She goes on to state:

And future royalties for the vaccine were just sold for $182 million cash. Dr. Offit’s share of vaccine profits? Unknown.

OK, I am going to be picky on details again. Yep, I make a lot of mistakes too, but I gotta get this one out. Dr. Offit doesn’t “hold” a patent on the vaccine. He is an “inventor”. He “assigned” the rights to:

The Wistar Institute of Anatomy and Biology, Philadelphia, PA
The Children’s Hospital of Philadelphia, Philadelphia, PA

I’ll also point out that he is listed as an inventor on about 24 patents worldwide, with about 10 on Rotavirus. Of those, there are multiple US Patents. (I’ll note that Dr. Offit does not list all his patents on his resume.)

I’m sure I’ve made the “holds patent” mistake a lot. I would venture to guess that you might even find the mistake in statements by Dr. Offit. In general, I wouldn’t think “holds patent” is a big deal. He may discuss it as “his” patent because the ideas are “his” and his co-inventors. But, in the financial sense, the patent belongs to the assignee. Initially, this was CHOP and the Wistar Institute. So, why bring it up here? Because, (a) a news reporter should be more accurate and (b) I think the language is important in this specific case.

What Dr. Offit (and his co-inventors) proabably [edit–no probably about it, hat-tip to Scwhartz for catching this] “hold” is an agreement with the assignees (CHOP and the Wistar Institute) for some share of license fees or for bonuses based on the successful licensing of the patent.

That’s how research works. The company or institution takes the risks that a researcher’s work will never pan out. They pay salary, they pay the fees to file patents. Typically, researchers’ shares in license fees are determined before research is completed, often when the researcher is hired.

But, that doesn’t sound as interesting as “He holds a patent licensed for $182 million”, does it?

I’m not going to downplay the likelihood that Dr. Offit made money off of the vaccine patents. I hope he did. But, if he were in it for the money, there were a lot of things he could have done to make more in his career once it became obvious that RotaTeq was likely to succeed. Talking about the lack of science behind the autism/vaccine connection isn’t one of them.

And that’s what this is all about, isn’t it? The implication that Dr. Offit is out for the money. People want to make the public think that he speaks out on vaccine safety because he will get more money.

Well, recall that the future royalties on RotaTeq have been sold. What does that tell us about Dr. Offit’s conflicts of interest? It tells us that the financial COI on RotaTeq is basically over!

Consider the world view of those who claim that Dr. Offit speaks out on vaccine safety to line his own pockets. How much money will Dr. Offit make on RotaTeq if he speaks out on autism issues? How much will he make on RotaTeq if he stops speaking out?

They are the same amount.

So, CBS had two potential COI’s on Dr. Offit: the endowed chair and the RotaTeq royalties. Neither of which is an active COI at this time and into the future.

So, what’s missing from the CBS example of “investigative journalism”? How about a discussion of Dr. Offit’s research grants? Where did the money come to support the research into the vaccine? We all know that CBS must have looked into that. Why nothing in the story? Could it be that there is no story there? Uh huh. The National Institutes of Health funded Dr. Offit’s research on rotavirus. Merck took over the development and testing phase of the vaccine in 1991, but the actual creation of the vaccine occurred without industry funding.

So, did Merck do “payback” and fund Dr. Offit’s research since then? (Again, CBS had to have considered that). Not that I can see. No Merck funded projects are listed in his resume with him as principal investigator.

Quite frankly, I am surprised by how few industry funded research projects Dr. Offit has been principal investigator on. Given his expertise, I would have expected much more industry funding. Much more.

That doesn’t make a good story though, does it?

So, how does Dr. Offit act when a COI is in play? Oddly, this discussion recently occurred on this blog.

Dr. Offit was a member of the Advisory Committee on Immunization Practices (ACIP), Centers for Disease Control and Prevention from 1998 to 2003. During this time he had to vote on a competitor’s rotavirus vaccine (RotaShield). (People seem to have a habit of confusing RotaShield with Dr. Offit (and team’s) RotaTeq)

So, when RotaShield, the competitor’s vaccine, came up for vote, what Did Dr. Offit say? He voted to include it in the schedule. It’s hard to spin that as something that would benefit Dr. Offit, as it clearly meant that the marketability of his own vaccine was reduced.

Rotashield was found to potentially cause intussusception. The numbers affected were too small to detect in the trial, so this concern was raised after the vaccine was added to the schedule. the ACIP took a vote on whether to remove RotaShield from the schedule–a move that clearly had potential benefits for Dr. Offit, so he abstained.

I guess that didn’t fit in the CBS story either.

Why are we talking about Dr. Offit again? We can all speculate, but the good folks at the Age of Autism answer the question for us:

Paul Offit is quickly coming under suspicion for his pharma ties and losing his usefulness as a vaccine promoter in the press.
It’s a little hard to pretend that all you do is work at Children’s Hosp. of Philadelphia, when you’ve gotten coverage on CBS and in the
Wall Street Journal because of serious conflicts of interest. Offit’s new book,
“Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure,” is due out this fall but I hardly think anyone will think of him as a credible independent expert.

Anne Dachel
Media editor

Yep, they realize that “Autism’s False Prophets” is soon to hit the shelves of bookstores. I wish I had a copy now, as it must be pretty scary to the Generation Rescue crowd since they are putting on such a big preemptive strike.

I’ve already asked my library to order a copy.

By the way, I love how everyone at Age of Autism is an editor

Sullivan
LeftBrain/RightBrain Antarctic Bureau, Sports Desk.

Is this guy for real?

17 Jul

From Media Matters:

On the July 16 edition of his nationally syndicated radio show, Michael Savage claimed that autism is “[a] fraud, a racket.” Savage went on to say, “I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’ ” Savage concluded, “[I]f I behaved like a fool, my father called me a fool. And he said to me, ‘Don’t behave like a fool.’ The worst thing he said — ‘Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.’ That’s what I was raised with. That’s what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.”

SAVAGE: Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden — why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.

What do you mean they scream and they’re silent? They don’t have a father around to tell them, “Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”

Autism — everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said — “Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That’s what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.

So this mans dad said: “Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot” eh?

Doesn’t sound like the advice sunk in.

Oh and next time someone tells you we don’t need more autism awareness, play them this.

Autism Speaks refuses to talk: 1.5 million autistic people? How do you figure?

12 Jul

Not long ago Michelle Dawson, an autistic adult and autism researcher in Montreal, Canada, wrote that she had tried to get Autism Speaks to explain how they arrrived at their well known number of autistic people in the US (or just autistic children in the US, depending on which of their statements you are reading). She phoned the Autism Speaks offices not too long ago and eventually was handed off to a man named Michael. This apparently was Autism Speaks epidemiology “expert” of sorts, Michael Rosanoff, a young man in a sort of low level position at Autism Speaks and without much training in epidemiology it seems.

You can read some of what transpired in Michelle’s conversation
on her QT board And on her blog

I like this paragraph in particular from that blog

On the other hand, if Autism Speaks applies their advertised 1 in 150 prevalence figure to the entire US population (which cracked 300 million in 2006), then the result is a total of 2 million autistics in the US, of whom about 500,000 are children and 1.5 million are adults. But this would mean that there has been a high stable rate of autism. This is a scientifically sound position, but one that Autism Speaks and autism advocacy in general has rejected.

jypsy also contacted Autism Speaks through a form on their website and was sent to check out a page on the Centers for Disease Control and Prevention’s website that explained the 1 in 150 number, which was not jypsy’s question. Hers was the same as mine, “How did you get the 1.5 million autistics in the United States number?”. jypsy was told to check back with Autism Speaks if she didn’t get her answer on the CDC website. She checked back with them reiterating that she wanted to know how they got the 1.5 million number and they didn’t respond.

So I emailed Michael Rosanoff (mrosanoff@autismspeaks.org) and the AS general email address (contactus@autismspeaks.org) my question, which is below Mr. Rosanoff’s response here from Monday, July 7, 2008:

Ms. Clark,

Thank you for the e-mail. I will be glad to answer your questions. Would you be available for a brief phone call? If so, please provide me with some dates/times you are available as well as a number at which you can be reached. I look forward to speaking with you.

Best,

Michael

—–Original Message—–
From: [Ms. Clark]
Sent: Friday, July 04, 2008 5:57 PM
To: contactus; Michael Rosanoff
Subject: Question about autism epidemiology

Dear Autism Speaks and Michael Rosanoff,

I am gathering information for an article I want to write about
autism prevalence in the United States. Autism Speaks uses the CDC’s
latest estimate of autism prevalence, that is 1 in 150.

Autism Speaks also uses a figure for the total number of people with
autism in the United States, 1.5 million.

1) Can you show me how you arrived at the 1.5 million number?

2) Which census numbers were you using when you arrived at 1.5 million
and which prevalence numbers were you using?

3) Is it possible that the number of autistic people in the US is
significantly higher that 1.5 million? That is, if you divide the
currently population of the United States by 150 would you arrive at
1.5 million?

4) Can you tell me how you see the 1.5 million breaking down by age
groups, in other words, about how many of the 1.5 million are about
age 3-15 and about how many are 16-21? Also, how many are over 21,
and how many are over 50? If you can break out the ages using
different age groups that would be fine, but basically, how many
youngsters and how many adults?

5) Please indicate if you are using numbers for the whole spectrum:
autistic disorder, pdd-nos and Asperger’s disorder, or if you believe
that a set of numbers only applies to people with “classic autism”.

Thank you very much in advance.

[Ms. Clark]

I sent my question to Mr. Rosanoff on Friday, July 4, and he responded on Monday which was nice and prompt. I answered him on Tuesday saying that he could call me Thursday and gave him a time slot. I then told him if he confirmed that time was good I’d send him my phone number.
He didn’t respond.
Then I found out that it was likely that Mr. Rosanoff would not be responding, that it was likely he was just trying to give the impression that he wanted to respond… since really, he could have responded in the email to me instead of asking if we could talk on the phone. The whole thing about needing to talk on the phone struck me as a little bizarre anyway. Why couldn’t he just answer the questions, he being Autism Speaks epidemiology expert? Shouldn’t he be able to crank out the answers in his sleep? For that matter why isn’t there a page or two on Autism Speaks devoted to explaining how many autistic adults they are trying to serve as the big mondo world encompassing AUTISM (b)org?

So after getting no response about my offered time slot for Michael Rosanoff to call me, I sent Mr. Rosanoff and a few others at the now curiously silent Autism “Speaks” (including to media@autismspeaks.org) semi-cranky email saying this shouldn’t be a so difficult you guys, and asking them just to answer my questions, please, thank you. And I have had no response from any of those I emailed.

So I encourage any of you to also email Autism Speaks or to call them and ask them, how do you get your 1.5 million number. About how many are adults and how many are children? You could also ask them if they have a vague idea of how many of the total have “autistic disorder” and how many have another of the ASDs/PDDs.

If you’d like to send them a letter you could address it to:

Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

This is their general phone number (212) 252-8584 and their fax: (212) 252-8676, if you prefer faxing the question. I suppose they answer the phone from 9-5 Monday through Friday, Eastern Time excepting holidays. I encourage all to use your “indoor voice” when calling and be polite as possible.

This is not a trivial question. If Autism Speaks wants to be BIG AUTISM* the borg (We are Autism Speaks. Resistance is futile. You will be assimilated.) of autism organizations then they should be able to give basic facts about the community they are claiming to serve when they are out pounding on people’s emotions to get them to fork over cash to support Autism Speaks.

*”Big Autism” is an apt term that was coined by the blogger Prometheus.

Neurodiversity on show

9 Jul

I think I’ve talked before about how the concept of neurodiversity is – as well as being heavily personal – not necessarily something that most people know actually exists as a defined word. What I mean is, some people do things or hold views that are quite obviously neurodiverse but might never have heard of the word or concept.

Googe Alerts sent me a fantastic blog post this morning which was about a story I’d missed due to personal illness. It seems a young autistic girl had gone to a restaurant with her family and were ejected because the girl had a meltdown and another family refused to pay for their meal until the family of the autistic girl were removed.

Renee, the blog owner, makes it clear how repugnant the attitude of both the restaurant (and this intolerant person who demanded the girls family were ejected) were:

Now I will admit that I don’t know much about autism but I do know enough to realize that those that have it deserve the same respect and dignity as anyone else.

I would _love_ it, if that was everyones starting point. How nice would it be to have that attitude as the prevailing one when it comes to autism (or disability in general)?

Thats Neurodiversity right there folks.

Renee, goes on to detail some very intolerant responses to the reported story. They’re nothing that most of us who are either autistic or parents of autistic people have not heard in one shape or other before:

I don’t care if a child is autistic or what, the child needs behaviour modification. In this case, the child should have been removed from the restaurant by a parent until the child calmed down.

Thats someone who doesn’t get it. Thats someone whos probable priority as far as disability goes is not to respect the persons essential difference but to try and ignore it and make sure it does’t inconvenience them.

Thats what Neurodiversity challenges.

I’ll leave the last word to Renee, along with my thanks:

When we refuse to see people who are living with a form of disability whether it be physical, or mental as worthy of sharing our space we are constructing them as less than. It is in this disharmony of worth and value that ‘othering’ occurs. Our ability to project difference onto others leads to dire consequences for those that are unable to fit into a model of what society has accepted as “normal.” Despite the fact that we are individuals and no true norm exists, socially what we expect is conformity to preconceived ideas of what validates personhood.

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