Archive | Autism RSS feed for this section

IACC to hold extra conference call on risk factors and prevention tomorrow

3 Nov

This notice just in from the IACC email list:

At the request of members of the IACC, the Interagency Autism Coordinating Committee (IACC) Scientific Workshop Panel 3 will be holding a conference call tomorrow from 12:00 – 1:00 PM ET, Wednesday, November 4, 2009 to discuss the updating of Question 3 of the 2009 IACC Strategic Plan for Autism Spectrum Disorder Research.

The agenda for the conference call will include a discussion of recommendations for line edit changes for Question 3 of the IACC Strategic Plan – “When Should I Be Concerned?” which addresses ASD risk factors and prevention. The draft line edits will be discussed at the November 10, 2009 meeting of the IACC full committee.

This phone call will be open to the public via conference call lines. Members of the public who call-in will be able to listen, but will not be heard.

To access the conference call dial:

USA/Canada Phone Number: 1-888-455-2920
Access code: 1050786

The latest information about the call can be found at: http://iacc.hhs.gov/events/2009/iacc-scientific-workshop-conference-call-cont.shtml.

You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit http://iacc.hhs.gov/

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

Please note: Schedule subject to change.

Age of Autism: misquotes Story Landis…jumps to unsupported conclusion

2 Nov

When the Age of Autism reported on a note written by Story Landis, they added a word that dramatically colored what was said. I am left wondering why would AoA make such an clearly detectable misquote? Read on and you will see what I mean.

Take a look at the piece titled “Dr. Story Landis: Autism not a multi-symptom disease but a money making scheme?“. That whole “money making scheme” part is what got people riled up. But is it really supported by what was said?

Here’s a little screenshot of the Age of Autism blog post, if you don’t want to click through to their site:

Segment of post about Story Landis

Segment of post about Story Landis

I know this seems redundant, but here is what they quote Dr. Landis as saying:

“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”

Emphasis added by me.

Why add emphasis, you might ask? Because “awards” is not in what Dr. Landis wrote in that first line. Go ahead and check. Here’s the note, as downloaded from the of the Age of Autism blog.

“I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

It is the second line that mentions awards:

Would be a good justification for looking at vaccine injured kids who have gotten awards.

The insertion isn’t a simple mistake–it is made twice in the same blog post. Here is the second place the mistake was made:

How could Landis imply that families are “trying to make” autism into a total body disease in order “to feed into vaccine injury awards.”

Neither section in the “quotes” is accurate. “Trying to make” isn’t in what Dr. Landis wrote, and, as we have just seen, “feed into vaccine injury awards” isn’t either.

Without the word “awards” added the meaning that the Age of Autism blog post tries to convey, heck, the title of the blog post–that Dr. Landis was speculating that this was a “money making scheme”–is unsupported.

Let’s dive into this a bit deeper. David Kirby, blogger at the Age of Autism and at the Huffington post did a very strange thing. In his piece he gets the correct quote from the note, doesn’t mention the mistake made at the age of autism, but still pushes the Age of Autism interpretation:

To many parents, it seemed that Dr. Landis suspected Redwood of “pushing” the study of these multisystem problems merely to boost the number of autism cases filed in vaccine court (the Vaccine Injury Compensation Program), and to increase their chances for victory. Judging by the comments on Age of Autism, those parents were profoundly offended by the implications of that interpretation.

I’m curious as to how Mr. Kirby came to the conclusion that Dr. Landis’ note was “merely to boost the number of autism cases filed in vaccine court” and “to increase their chances for victory”. Dr. Landis didn’t mention the court, the chances of victory…or even “awards” in the context that would support Mr. Kirby’s interpretation.

I’d be curious as to whether Mr. Kirby pointed out the mistakes to the Age of Autism blogger in question.

A casual observer might find it odd how Mr. Kirby corrected the quote and yet persisted in pushing (yes, I’ll use the term pushing) the interpretation based on the misquote. The same casual observer would find it especially odd, since Mr. Kirby was the one to publicly disclose Dr. Landis’ explanation of her comment:

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

“The other part of my note” being “Would be a good justification for looking at vaccine injured kids who have gotten awards.”

If you can look at the quote fresh, consider this interpretation–the first sentence, “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?” is discussing the if autism as a multisystem disorder would feed into the *idea* of autism as a vaccine injury. The assertion that her comment referred to vaccine injury “awards” is at best speculation and, at worst, a pretty clear misquote. I could speculate on the motives of the Age of Autism blogger, but haven’t we just seen how dangerous it is to speculate on motives with little information?

note: I made some small edits for clarity shortly after publishing this.

Evaluation of Immunization Rates and Safety Among Children with Inborn Errors of Metabolism

2 Nov

Ever since the Hannah Poling case became public, and especially give the way in which David Kirby has presented the case, there has been a question of whether vaccines can cause regressions in children with inborn errors of metabolism (mitochondrial disorders are a subset of these).

I discussed one very recent paper Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression. Commenter and LBRB blogger Joseph made the very correct observation then:

I’d say it’s potentially interesting, but limited. In order to tell that something is a risk factor, you need a case-control study.

More specifically, can self-selection bias be discounted in this study?

It is encouraging to see that such studies into this question are being staged. Here is the abstract from a study presented 2009 Infectious Diseases Society of America titled, Evaluation of Immunization Rates and Safety Among Children with Inborn Errors of Metabolism.

Abstract

Background: Children with metabolic disorders are a potential high-risk group for vaccine-preventable diseases. Despite recommendations that they receive all routine immunizations, information regarding both immunization rates and safety data within this population is lacking.
Methods: Using Northern California Kaiser Permanente’s (NCKP) integrated electronic medical record, we identified children up to age 18 years who had an inborn error of metabolism (IEM) from 1990 to 2007. We assessed immunization rates among a subset of infants with IEM born at NCKP who were members until age 3 years matched to healthy infants (1:20), comparing both immunizations received by age 2 years and timing for receipt of vaccines. We next separately assessed for adverse events after immunization by using self-controlled analyses among all children up to age 18 years with an IEM who received at least 1 vaccine at any time, comparing emergency room visits and hospitalizations during post-vaccine days 0-30 to post-vaccine days 31-60.
Results: We identified 79 infants with IEM who were born and remained a member of NCKP at age 3 years. Compared to 1580 matched controls, there was no difference in the proportion of children with IEM up to date for vaccines at 2 years, nor was there any delayed receipt of recommended vaccines during the first year. We also preliminarily identified 322 children with IEM who received any vaccine. Preliminary analysis in this group did not detect an increase in emergency room visits [rate ratio (RR) 0.83, 95% confidence interval (CI) 0.60, 1.14] or hospitalizations (RR 1.1, 95% CI 0.9, 1.4) during the 30 days after vaccination compared to post-vaccine days 31-60.
Conclusion: Children with metabolic diseases in this cohort were vaccinated at rates comparable to healthy children. Although sample size is a limitation, preliminary evidence does not suggest an association between vaccination and an increased risk for serious adverse events.

Emphasis added.

A news story on the subject quoted the session chair where the study was presented:

“These findings are very reassuring,” said Larry Pickering, MD, National Immunization Program, Centers for Disease Control and Prevention, and Emory University, Atlanta, Georgia, who moderated the session at which the study was presented.

“Most of us who take care of kids with inborn errors of metabolism think vaccination is one of the best interventions we can offer them,” he said. “They are at increased risk for devastating complications, even death, from the diseases that the vaccines prevent.”

This is reassuring. Preliminary, yes. I can already see the criticisms, both legitimate and otherwise, that will be levied against this study. but potentially very reassuring. Vaccines are one of the front line interventions in protecting people with mitochondrial disorders.

Let’s see if I can predict the criticisms:

1) not peer reviewed
2) many authors received grant money from vaccine manufacturers.
3) the sample size is small (79 infants)
4) the number of infants with mitochondrial disorders is even smaller (7)
5) it would be good to see a comparison of hospitalizations in the months previous to immunizations (if possible)
6) the time spanned by the study covers a large change in the immunization schedule. The sample size of infants immunized in the current schedule is likely to be rather small.

The sample size is small, but it would be interesting to see if the prevalence of metabolic disorders has increased over this time span. But, as autism has shown us, the correlation=causation arguments can be shaky at best.

Why don’t the so-called “vaccine safety” orgs talk about vaccine safety?

30 Oct

I really do plan to get back to real autism related subjects. I do. This subject just came up yesterday and it really bugs me so I decided to write something quick.

One of the most common statements from the groups (Generation Rescue, Think About Curing Autism (TACA), the National Autism Association, SafeMinds….) who promote the vaccines-caused-autism-epidemic idea is that they are “vaccine safety” groups, not “anti-vaccine”. The self-named “National Vaccine Information Center” is, I would think, supposed to have vaccine information.

One vaccine these groups love to hate is Rotateq, a vaccine against rotavirus infection. Why? Because it was invented by a team including Dr. Paul Offit, who just so happens to be one of the most vocal critics of the vaccine-caused-autism-epidemic.

Take, for example, this comment by SafeMinds member, and Age Of Autism blogger Mark Blaxill:

“Paul has saved hundreds of thousands of lives (granted mostly in underdeveloped countries, but rotovirus still kills a small few in the US).”

That’s quite an extravagant assertion, and almost certainly false. What evidence do you have that Rotateq (Offit’s invention) has been adminstered in sufficient quantities to prevent death in developing countries from complications of diarrhea? Rotateq is deployed in only one country besides the US. Here in the US we know Rotateq (and Rotashield before it) has CAUSED death and have little information that it has prevented any.

The consistent hyping of the benefits of marginally beneficial vaccines is one of the most disturbing features of a vaccine development industry run amok. Rotateq is perhaps the most egregious example of a vaccine product that provides next to zero benefit in the markets in which it has been deployed.

Let me be clear. In the markets in which it might have value, Rotateq is far too expensive to be widely deployed and is therefore rarely used. In the markets in which it is not needed, it is mandated at high prices and used widely with little benefit and documented (and almost certainly underestimated) serious risk. Those mandates and high prices are justified by a marketing non sequitor that Josh perpetuates here: pointing to deaths outside the geography in question as justification for a vaccine blockbuster that can have no impact whatever on those deaths.

Orwell never dreamed of doublespeak as bad as this.

What made this comment stick in my mind is the unsupported claim that Rotateq “CAUSED” death (nice use of all caps, there, by the way).

I am also drawn to the common belief (not directly expressed in the above quote) that there is no or only minimal safety research done.

This week, the CDC put out an MMWR (Morbidity and Mortality Weekly Report) on the effects of Rotateq. The cliniical trial showed that Rotateq works. The surveillance shows Rotateq works–the number of submitted samples that tested postive went down after Rotateq was introduced.

The big point I’d like to bring to light was a recent talk given at the Advisory Committee on Immunization Practices (ACIP) meeting. They are monitoring intussusception in children given Rotateq. Intussusception is an intestinal problem, potentially fatal, that was linked to the previous rotavirus vaccine. It is why that vaccine, Rotashield, was pulled from the market. As such, it is good an proper that they monitor intussusception with Rotateq.

The results?

Results provide no evidence that RotaTeq®receipt is associated with an increased risk for IS [intussusception] 1-30 days or 1-7 days following vaccination.

Typically those trying to claim that Rotateq is dangerous use the Vaccine Adverse Events Reporting System (VAERS). Any event reported to VAERS is taken to be caused by the vaccine. VAERS is a “passive” system. People report into VAERS and no one checks that the diagnoses are accurate. Also, intussusception happens even without vaccines. So you really can’t take every VAERS report as a causal event–i.e. just because someone reports to VAERS that a child had intussusception sometime after Rotateq, that doesn’t mean Rotateq caused it.

Do I expect people like Mr. Blaxill to stop claiming that Rotateq is dangerous? No. But I put this out there to take away any last shred of “plausible deniability”. They, the self-styled “vaccine safety” groups, don’t report on actual vaccine safety studies. That doesn’t mean they don’t read them and know about them.

IACC meeting November 10

29 Oct

The following is an announcement from the Interagency Autism Coordinating Committee (IACC)

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, November 10, 2009 from 9:00 AM – 5:00 PM ET at the National Institute of Mental Health (NIMH), Neuroscience Center, 6001 Executive Boulevard, in Rockville, MD.

The agenda for the meeting will include a discussion of recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be available on a first come, first served basis, with expedited check-in for those who are pre-registered. Online pre-registration will be available. Please visit the IACC website for pre-registration information: http://www.iacc.hhs.gov/events/2009/full-committee-mtg-announcement-November10.shtml.

The meeting will be remotely accessible by videocast and conference call.

To access the conference call dial:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

The latest information about the meeting, including videocast information and online registration can be found at: http://iacc.hhs.gov/events/.

You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit http://iacc.hhs.gov/

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

Please note: Schedule subject to change.

You can call in for whatever amount of time you have available. Get the information firsthand.

Amy Wallace discusses the responses she got to the WIRED article

28 Oct

A recent article in WIRED magazine took a close look at the vaccine/autism discussion. I discussed it briefly in a previous post. The article took a very science-oriented stance which, you can imagine, did not please the vaccines-cause-autism organizations.

For example, the “vaccines-cause-autism” organizations are listed by WIRED as “anti-vaccine” organizations.

The WIRED piece has caused a stir, even outside of the autism communities. Ms. Wallace’s piece has been noticed by Time Magazine, MinnPost.com, and The Atlantic. Oh, and some of the “anti-vaccine” orgs blogged about it too.

Not surprisingly the author of that piece, Ms. Amy Wallace, received a lot of responses to her article. In an interesting move, she has discussed many of the responses on Twitter. These have been compiled on the “bastard sheep” blog.

In addition to the WIRED article getting noticed, the responses are getting noticed. The Terra Sigillata blog has a piece up. The LA Times LA Observed has a piece on their blog.

Let’s take a closer look at the responses. She got about 250 so far, with about 3:1 in favor of the article. Some of the responses from her twitter feed: Some responses, like the one noted in Terra Sigillata, were quite harsh. Here are a couple:

I’ve been told I’ll think differently “if you live to grow up.” I’ve been warned that “this article will haunt you for a long time.”

“If she lives to grow up”? Pretty clear threat there.

She has every right to complain. Instead Ms. Wallace has reported on these comments, but for the most part she hasn’t added commentary. This hasn’t stopped her detractors from calling her a “cry baby”.

I’ve been called stupid, greedy, a whore, a prostitute, and a “fking lib.” I’ve been called the author of “heinous tripe.”

This is one view the outside world is getting of the autism communities. Does anyone think this is helping? OK, there are the small minority. So, to be more precise, does anyone reasonable disagree with the idea that this hurts the autism communities?

Here are some more comments she received that focus more on the autism communites:

In his book, Autism’s False Prophets, Dr. Offit writes about scientists who have been intimidated into staying silent about autism/vaccines. If scientists – who are armed with facts and trained to interpret them – are afraid, can it be any surprise that a lot of parents are, too?

No, it isn’t a surprise. Sad, yes. Surprise, no.

One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it, “Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.” Another mom wrote, “The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.” Another said, “I have a Son that needs Me – not another needle.”

To which Ms. Wallace responded rather well:

This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.

Ms. Wallace goes on to state:

The dominant emotion in even the angriest emails to me is despair. Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.

Which she follows with this comment from a parent:

“Those of us with autistic children are really sick of you know-it-alls,” one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far. “I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends. So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”

Ms. Wallace responds:

No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said — every available research dollar should be aimed at finding the causes of the disorder

Leaving aside the discussion of whether autism is a medical condition for the moment (although I expect and welcome comments on this):

With all due respect, here Ms. Wallace made a common mistake in equating understanding causation with progress towards therapies. Ms. Wallace seems to have bought into the assumption that if we know the causes, we will automatically know treatments. Well, yes and no. Yes, understanding causation may help in many cases. At the same time, in many cases it likely will not.

Take, for example, the idea that autism is vaccine injury. The alternative medical community already assumes autism is a vaccine injury. They already claim to be treating autism as vaccine injury. Do they have a “cure”? No. Do they even have any proven therapies? No. For that matter, are any of their therapies really based on treating vaccine injury, as they claim? No. As a simple example: can anyone point to a truly innovative therapy that Andrew Wakefield (father of the MMR-causes-autism theory) has developed?

Consider HBOT (Hyperbaric Oxygen Therapy). Can anyone give a clear explanation how that ties into vaccine injury? The closest “therapy” based on vaccine injury proposed so far is chelation. The removal of mercury from a body supposedly mercury poisoned from vaccines. The latest study, from their own researchers mind you, shows it is as effective as a placebo. Which is a nice way of saying: chelation doesn’t work.

I am not saying that causation research is useless. Far from it. However, it is neither necessary nor sufficient to produce the medical therapies many parents are searching for to treat their children.

I’ve gone off track from reporting the responses Ms. Wallace received to her piece. I’ve probably also sidetracked the discussion that will happen here.

Today Ms. Wallace added some comments she has received from autistics.

n the past week or so, I’ve heard from several people who said they were on the autism spectrum. They all said they enjoyed the article. What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.

I’ll end with one comment out of those tweets:

“I have Autism. But: I am a person, not a problem. I am an asset, not a subject. I’m not a lab mouse, I am human.

Number of cases before the vaccine court drop off dramatically

28 Oct

We often hear about how there are about 5000 cases before the vaccine court claiming autism as a vaccine injury. What we don’t hear is that almost all of those cases were filed years ago.

Take a look at the data on the number of cases filed per year. Or, take a look at this graph I made of the data (click to enlarge):

Cases submitted to the vaccine court by year

Cases submitted to the vaccine court by year

Red shows autism cases filed. Black shows non-autism cases.

Not much needed in the way of discussion. Autism cases peaked in 2003, six years ago. Autism cases are now at about the same level or less than non-autism cases. It has been low and flat since about 2006.

I know I’ve done a lot of vaccine-oriented posts lately. This is a good indication that I need to spend time on other subjects.

Environment of Harmful Ideas

27 Oct

There used to be an email group on Yahoo devoted to the ideas in David Kirby’s book, Evidence of Harm? It was called Evidence of Harm or EOH for short. The book was ostensibly an exercise in investigative journalism.

  • Had there been a dramatic increase in autism amongst children born in the 1990s?
  • Was this increase caused by the increasing burden of mercury resulting from more thimerosal containing vaccines being added to the vaccine schedule at the beginning of the decade?
  • Was the government involved in a cover up?

Supporters of the vaccine-autism hypothesis saw the book as vindicating their beliefs. Hence the EOH group. But Kirby had always been clear about one thing. If mercury was a significant cause of autism then its removal from childhood vaccines should cause the numbers of new cases to fall. When the mercury was removed and numbers continued to rise Kirby wriggled a bit and then invoked environmental toxins as the reason. As a result the yahoo group Evidence of Harm changed its name to Environment of Harm. So now it was environmental mercury and not the mercury in vaccines. Well not any more. All versions of the Vaccine OS are a bit like Microsoft Windows . They have to be backward compatible with previous versions and are consequently laden with bloatware and very unstable. If you read the group today there are very few autism specific posts and lots of general anti-vaccine comments. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment

But yesterday someone posted a link to yet another story of an autistic teen allegedly murdered by his mother. It is too early to speculate on the outcome and at least one newspaper has closed its online comment section on legal grounds until the trial is over. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment. [edit]

To the group sadly I beleive we will see a rash of cases where , where they put there child to sleep. The same phenomena occured in england over a two year period , that force the UK gouv to increase funding Before they wake up , I suspect we will see many cases

Pierre

So murder is now “putting to sleep.” And heck it works! When parents went on a killing spree in the UK the government increased its spending on autism. I live in the UK I remember a few isolated cases of murder of autistics, no more, but sadly no less than what is happening in the rest of the world. I do not remember it leading to a growth in funding. What we have in the UK is a National Autistic Society that is committed to improving the lives of autistic people and their families. It operates across the lifespan. It does not demonize autism or cry wolf over vaccines and epidemics. Its campaigns section has enabled autistic people to talk directly to lawmakers and the law is changing. More services are on the way. But at no point were the deaths of autistic children exploited for campaign purposes. EOH is well named. If it can foster the sort of twisted thinking and disregard for the facts displayed by Pierre it truly is an environment of harm.

Tags: , ,

Blogs raise the alarm on autism conference

27 Oct

That’s the title of a post on Canada’s National Post website. Another article on the main site reads Controversial autism conference got funds from Sick Kids
.

The pieces are about the fact that Sick Kids, a highly respected children’s hospital, is hosting a Canadian version of the Autism One conference.

AutismNewsBeat attended and reported on a previous AutismOne conference, should you wish to see what happens at such conferences.

The Canadian version of the AutismOne conference appears to be much smaller than its American counterpart. Here is the list of speakers:

Jonathan Alderson, EdM
Evdokia Anagnostou, MD
John DeMarco, BCBA
Wendy Edwards, MD
Richard Frye, MD, PhD
Paul Hardy, MD
Martha Herbert, MD, PhD
Sonja Hintz, RN
Bryan Jepson, MD
Derrick MacFabe, MD
Valerie MacLean
Lindsay Moir
Manon Noiseux, MsC
Jon Pangborn, PhD
James Partington, PhD
Dan Rossignol, MD
Stephen Shore, EdD
Chantal Sicile-Kira
Lauren Underwood, PhD
Rudi Verspoor, HD(RHom), DMH
Sueson Vess, AutismOne Chef
William Walsh, PhD

Compare this to the last Chicago AutismOne conference speaker list:

Lisa Ackerman
Tim Adams, JD
James Adams, PhD
Alanna Apap, BCBA
Lynne Arnold
Tapan Audhya, PhD
Carmen Augustin, MSW, LCSW
Mary Lynch Barbera, RN, MSN, BCBA
Jeffrey Becker, OD
Marion Blank, PhD
Mark Blaxill, MBA
Kenneth Bock, MD
Tom Bohager
Mika Bradford
Kerry Brooks
Gregory Brown, MD
Jeff Cantor, DDS
Jane Casey
Ved Chauhan, PhD
Charles Chapple, DC
Lillian Chen-Byerley, MS, OTR/L, RCTC
Sylvia Chin-Caplan, JD
Rob Coben, PhD
Ken Cook
Laura Corby
Mark Corrales, MPP
Lee Cowden, MD
Mary Coyle
Mary Beth Cull
Dorinne Davis, MA, CCC-A, FAAA
Dennis Debbaudt
Vicky Debold, PhD, PN
Amy Derksen, ND
Richard Deth, PhD
Lisa Dietlin
Tami Duncan
Stephen Edelson, PhD
Mayer Eisenstein, MD, JD
Michael Elice, MD
Lark Eshleman, PhD
Seyyed Hossein Fatemi, MD, PhD
Barbara Fischkin
Barbara Loe Fisher
Richard Frye, MD, PhD
Carolyn Gammichia
Andrew Gammichia
Patricia L, Gannon, DDS
Mark Geier, MD, PhD
David Geier
Kristin Selby Gonzalez
Dana Gorman
Doreen Granpeesheh, PhD
Cindy Griffin, HD (Rhom), DSH-P, DIHom
Katherine Guttshall, MA, BCBA
Louise Habakus, HHP, AADP
Boyd Haley, PhD
Elaine Hall
Paul Hardy, MD
Martha Herbert, MD, PhD
John Hicks, MD
Betsy Hicks
Sonja Hintz, RN
David Holmes, EdD
Devin Houston, PhD
Diane Isaacs
Laurette Janak
Pam Johnson, DDS
Oliver Jones
Michelle Lancaster, DDS
Raun Kaufman
KP Khalsa, DN-C, RH
Cheryl Kilmer
Brian King, LCSW
David Kirby
Steven Kossor
Robert Krakow, JD
Arthur Krigsman, MD
Andrea Lalama
Mary Jo Lang, PhD
Lindyl Lanham, DSH-P, BS Spec Ed
Jeffrey Lewine, PhD
Carolyn Lewis
Allen Lewis, MD
Derrick MacFabe, MD
Cynthia Macluskie
Mark Macluskie
Jackie Marquette, PhD
Vicki Martin, RN
Julie Matthews, CNC
Jenny McCarthy
Woody McGinnis, MD
Mary Megson, MD
Joseph Mercola, DO
Claudia Miller, MD
Elizabeth Nickrenz
Mark Noble, PhD
Nancy O’Hara, MD
Melissa Olive, PhD, BCBA
Dan Olmsted
Valerie Paradiz, PhD
James Partington, PhD
Mitchel Perlman, PhD
Kathryne Pirtle
Jon Poling, MD, PhD
Sym Rankin, CRNA, APN
Kerri Rivera
Rick Rollens
Mary Romaniec
Dan Rossignol, MD
Jennifer Salcido, ND
Sarah Clifford Scheflen, MS, CCC-SLP
Harry Schneider, MD
Norm Schwartz, MD
Alice Shabecoff
Stephen Shore, EdD
Chantal Sicile-Kira
Terrie Silverman, MS
Allan Sosin, MD
Jane Sparks, RN
Pramila Srinivasan
Kim Stagliano
Cheryl Steinberg
Sandra Stewart
Carol Stott, PhD
Rev. Lisa Sykes
Catherine Tamaro
Theoharis Theoharides, MD, PhD
Polly Tommey
John Turner, DC, CCSP, DIBCN
Lauren Underwood, PhD
Anju Usman, MD
Sueson Vess
Aristo Vojdani, PhD
Andrew Wakefield, MB, BS, FRCS, FRCPath
David Warner
Vicki Warren, EE
Toby Watkinson, DC
Stacey Whetlow
Robert Weiner, PhD, CST-D
Amy Yasko, PhD

Yes, Canada will miss out on Jenny McCarthy and Andrew Wakefield, who was recently given “The first annual Andrew J. Wakefield Award for Courage in Medicine” by AutismOne, if that gives you an idea of AutismOne’s leanings. Does Sick Kids want to be hosting future “Andrew J. Wakefield Award for Courage in Medicine” award ceremonies? Do they want to have HBOT balloons smoking in their exhibit hall? Do they want to host future conferences with speakers from SafeMinds (Mark Blaxill), TACA (Lisa Akerman), the “National Vaccine Information Center” (Vicky Diebold and Barbara Loe Fisher), together with Mark and David Geier (bad armchair epidemiologists and, worse yet, purveyors of Lupron as a therapy for autism), Mayer Eisienstien, Joseph Mercola…?

I join Orac at Respectful Insolence in asking, what was Sick Kids thinking?

David Kirby: No friend to my autistic kid

27 Oct

David Kirby is certainly no friend to my autistic child.

I don’t know why I let David Kirby annoy me. It is a pretty safe bet that whenever he blogs he will write something that rubs me the wrong way. Whether it is his clear lack of science acumen or his faux fence sitting “I’m just trying to spark a national debate” ruse, he never fails to write something offensive.

Recently he responded to the very strong possibility that the number of autistic adults is much higher than previously thought with what amounts to essentially, “Autistic adults? Nope, I’ve never seen ’em. They must not exist”.

The right answer in my view would be, “We need to confirm this right now and find out who may be getting no support or the wrong support.” That’s what a friend to my kid would say. By denying the existence of autistic adults Mr. Kirby has shown himself to be about as far from a friend as I could imagine.

In his recent interview with Sharyl Attkisson Mr. Kirby noted that he didn’t see any autistics on the subway or in his neighborhood, therefore there can’t be 1 in 100 autistic adults. Therefore, according to his logic, there is an autism epidemic. Of course he says this is to support the idea that we need to take the vaccine issue seriously.

It was nonsense when he first said it and I pointed it out. I thought that having embarrassed himself on national TV, Mr. Kirby would quietly drop the idea that somehow “I know ’em when I see ’em” is either valid or respectful. I’ve watched Mr. Kirby for too long to even hope that he would apologize or do a real retraction without real pressure but I will say I was surprised to see him write a blog post basically defending his autistic-radar.

In a recent blog post Mr. Kirby has expanded his scope of not-finding autistics. It isn’t just his recent subway ride that was devoid of adult autistics, it is his entire life:

I have lived in many different cities, worked at nine different jobs, and met thousands of men and women throughout my years. I cannot recall people who showed the characteristics of high-functioning autism, though I must have met some along the way, at least in passing. But there were not 1-in-60 boys with ASD in my schools and there are not 1-in-60 men with ASD in my area. I think I would have noticed them by now.

Repeated for emphasis:

I cannot recall people who showed the characteristics of high-functioning autism

In an entire lifetime, no one who might be high-functioning autistic?

David Kirby has been around the autism community for a while now. Somehow I think he must have seen some adult with high functioning autism. Are we to believe that no autistic adults attend the DAN conferences, the Autism One conferences, or the myriad other alternative medicine conferences that hold David Kirby as a hero? Are we to believe that no autistic adult parents of autistic children attend these conferences?

One specific question that popped into my mind: Has Mr. Kirby never been to a conference with Teresa Binstock? Ms. Binstock is one of the authors of Autism: a novel form of mercury poisoning (a faux-journal paper in Medical Hypotheses). Ms. Binstock is also reported to be an autistic adult (Asperger syndrome). Mr. Kirby has never met her? Possible, but unlikely.

According to his interview Mr. Kirby’s criteria for Asperger syndrome are:

“restrictive, repetitive and stereotypical patterns”

“interests and behaviors that are abnormal”

“Repetive motor mannerisms such as hand or finger flapping”

“Significant impairment in social, occupational and other important fuctions”

I guess as Mr. Kirby was passing people on the subway platform he had some test of social functions? He can tell what your interests are (and somehow label them abnormal) just by looking at you?

For Mr. Kirby’s edification, here are the DSM-IV criteria:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”

Here’s another hint: if diagnosing ASD’s was as simple as a checklist there wouldn’t be tests like the ADOS.

Mr. Kirby continues the old ruse that autistics are so obvious that one couldn’t possibly miss them, even in passing. Contrary to Mr. Kirby’s assertion, it is possible that he could have missed some autsitics in his subway travels. When the autism rate for children in Cambridgeshire was recently reported, the researchers noted that a large fraction (1/5 to 1/3) of autistic students were undiagnosed. Yes, even educational professionals who spend every day with a kid can miss the fact that the child has an ASD.

In his blog post Mr. Kirby bolsters his argument with a quote from Anne Dachel, probably best known to readers here as an blogger at the Age of Autism. Ms. Dachel states:

“an insult to thousands of teachers and counselors and doctors – who apparently ‘stupidly’ ignored these kids in the past. If they were always here, but we just called them something else, then what did we do with them?”

I am always saddened when an educator like Ms. Dachel confuses intelligence with knowledge. Intelligence (smart/stupid) is not the same thing as knowledge (or ignorance). When previous generations didn’t diagnose a child with an ASD there were many reasons. One big reason–the diagnostic criteria were different then. That is and example of ignorance. I feel silly pointing this out to an educator, but in 1980 they didn’t know (in fact couldn’t know) that the diagnostic criteria would be different in 2000. How many times have we heard, “autism wasn’t covered in medical school back then”? This is used to “show” that autism was rare then. Well, if they didn’t get the training, they were very likely ignorant of the differences between autism and other disabilities. They were certainly unlikely to know the diagnositic criteria for Asperger syndrome, since it didn’t exist at the time.

To answer Ms. Dachel’s question, “what did we do with them”: many autistics services were served under the label of mental retardation. This isn’t even speculation. In a recent study King and Bearman showed that a large number of autistics in California were diagnosed as having mental retardation before 1987. As the criteria changed and awareness grew, these individuals (both children and adults) were also given autism diagnoses. They checked the actual records of actual people and documented it.

To further answer Ms. Dachel’s question, “what did we do with them”: many of “them” were unserved–just like today. Remember that study in Cambridgeshire we just mentioned?

Back to David Kirby’s blog post: he shows us that he is truly “concerned”:

In my opinion, to shrug and treat this story as if things have probably always been this way is, frankly, wishful thinking and unsettling.

It is Mr. Kirby’s response that is unsettling. Heck, it is beyond unsettling. Way beyond.

I think his response the NHS report (that there are 1 in 100 autistic adults) by claiming that since he can’t see “them”, “they” don’t exist is beyond wishful thinking and unsettling. Mr. Kirby acts as though the study doesn’t exist. Worse, he acts as though it shouldn’t exist.

I usually try to avoid speculating on motivations. But, I can’t help myself with these latest comments by Mr. Kirby. Why did he feel the need to downplay the existence of adult autistics in high numbers? The report that there is a high number of unidentified autistic adults is a direct threat the the idea that vaccines caused an epidemic of autism. How does that play to someone who has made a career out of “Evidence of Harm. Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

Consider, if you will, what happened when people like Mr. Kirby pushed the idea of an epidemic of vaccine-induced autism. When the ideas came forward that the MMR vaccine or the vaccine preservative thimerosal could be causing autism, the scientific community took it seriously and responded with multiple studies looking for better evidence. But now that there is evidence of a large contingent of adult autistics, Mr. Kirby joins the denialists and defends the old-guard thinking. Ironic, that.

It has always been a reasonable assumption that there is a large contingent of unidentified autistic adults. The active denial of this possibility has long bothered me. The denial in response to the UK survey of autistic adults is just beyond the pale.

Mr. Kirby is just no friend to my kid. My kid needs advocates who will fight to make a better world for autistics. How can we do that if we deny their existence? How can we prepare for the kids of today to become adults if we don’t start supporting autistic adults now?

← Older Entries
Newer Entries →