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Andrew Wakefield and Lance Armstrong: two unethical people exposed by the Sunday Times

30 Jun

The Sunday Times has a series of films (Unquiet Films, has a series of short films about the impact of The Times has had over the years.

Newspapers are all about stories – but sometimes the best stories are the ones we don’t tell.

Let’s not forget that news is often something that someone, somewhere, doesn’t want you to know. The real-life tales of how world-changing exclusives – whether from foreign reporters under fire, or determined hacks banging against stone-walling bureaucracy – are brought out into the open can be just as extraordinary as the articles that end up in the newspaper. Sometimes the story behind our amazing photo-journalism, campaign to change the law on adoption, to make cities safe for cycling, to reveal the corruption at the heart of FIFA, or the lies of a champion like Lance Armstrong are as exciting as a thriller, as tense as an episode of House of Cards.

We decided it was time to showcase just what the best journalists do… the real lives, real struggles, real bravery behind the newspaper stories that change the course of history. It’s all very well to boast that The Times and the Sunday Times strive to speak truth to power, without fear or favour and to report the truth, whatever the cost. But too often exactly what that takes – the death threats to reporters, the legal battles, the toughness and integrity it takes to get the article on the page – gets lost in the telling.

So here, in a series of extraordinary and independently made short films are some of the amazing, true-life stories behind the stories – we hope you find them as moving and inspiring as we do.

As an example of the “best journalists do”, they have a segment entitled “question everything“. It focuses on Brian Deer (whose work exposed the unethical actions of Andrew Wakefield, later found proved by the GMC) and David Walsh (who pursued and uncovered the Lance Armstrong doping scandal).

From BAFTA-winning filmmaker Will Clark: We now live in a world where more often than not, only the surface facts of a story are reported. Real investigative journalism seems to be a dying art and I feel this is something we should all be deeply concerned about. I wanted to create a film that focused on two Sunday Times journalists whose pursuit for the truth turned into an obsession. From Lance Armstrong’s doping revelations to Andrew Wakefield’s fraudulent MMR claims, both were lengthy investigations that were published at risk by the newspaper. Both investigations also managed to reveal large scandals that would most likely have remained hidden were it not for the perseverance and tenacity of the journalists covering the stories. I’m sure every reporter has secretly wished for his or her very own All The President’s Men moment. This is the tale of two journalists who got their wish.

Here’s the video:

By Matt Carey

A cause célèbre for those claiming vaccines cause autism

1 Mar

If you participate in online discussions about autism and vaccines (and I’d advise you to spend your time more productively), you will often hear about how the U.S. Court of Federal Claims (the “Vaccine Court”) has compensated numerous cases of autism, the government just doesn’t admit it. These are often referred to as “secret” compensations, even though the decisions are in the public record. And, quite frankly, the families were not compensated for autism claims.

One family whose story has become a cause célèbre thanks to David Kirby is now the topic of a new Court decision. In this new decision, the court responds to the parents request to have past court documents redacted. They would like to stop being approached by members of the media.

Before we get to the new decision, consider Mr. Kirby’s story:

The parents, who did not want to be interviewed, specifically asserted that [child] “suffered a Vaccine Table Injury, namely, an encephalopathy” as a result of his MMR vaccination on December 19, 2003.” (“Table injuries” are known, compensable adverse reactions to immunizations.)

Alternatively, they claim that “as a cumulative result of his receipt of each and every vaccination between March 25, 2003 and February 22, 2005, [child] has suffered . . . neuroimmunologically mediated dysfunctions in the form of asthma and ASD.”

(child’s name redacted by me)

The parents didn’t want to be interviewed. They also presented two claims, one encephalopathy and one autism. Mr. Kirby focused on the autism claim, even though it wasn’t compensated. Mr. Kirby states:

Whether HHS agreed with [child]‘s parents that his vaccine-induced brain disease led to ASD is unknown. The concession document is under seal.

Actually, it was known. The proffer of an award was titled “Proffer on Award of Compensation; Measles-Mumps-Rubella (MMR); Table Injury; Encephalitis.”

The child was being compensated for a table injury: encephalitis. Within that document, it is clearly stated:

On June 9, 2011, respondent filed a supplemental report pursuant to Vaccine Rule 4(c) stating it was respondent’s view that Ryan suffered a Table injury under the Vaccine Act – namely, an encephalitis within five to fifteen days following receipt of the December 19, 2003 MMR vaccine, see 42 C.F.R. § 100.3(a)(III)(B), and that this case is appropriate for compensation under the terms of the Vaccine Program

Emphasis mine.

Even with this information showing the family were not compensating autism clearly in the public domain Mr. Kirby tells us it’s “unknown”. Then, true to Mr. Kirby’s style, he leads his readers to the evidence supporting the possibility that it was ASD while never coming right out and saying it.

Perhaps the feds were loath to concede yet another vaccine case involving autism. Four cases in the Autism Omnibus Proceedings were recently compensated. Three of those cases are marked with asterisks, indicating the government did not conclude that autism can be caused by vaccines. But the fourth autism case that was paid out in 2013 ([child]‘s case? We don’t know) has no such caveat.

Mr. Kirby was referring to the HRSA statistics page that lists vaccine court petitions filed and compensated. At the time Mr. Kirby wrote his piece, the statistics report did include autism cases. They no longer do, so you have to check archived pages to see what he’s referring to.

At the time of Mr. Kirby’s article, there appear to have been two cases where someone in the Omnibus Autism Proceeding did receive compensation (I don’t have reason to believe Mr. Kirby was in error, but the archived page doesn’t show four cases). Both of those cases had asterisks.

*May include case(s) that were originally filed and processed as an OAP cases but in which the final adjudication does not include a finding of vaccine-related autism

Mr. Kirby concluded with:

Meanwhile, as HHS says it “has never concluded in any case that autism was caused by vaccination,” it is still underwriting autism treatments such as ABA for children in its vaccine-injury program.

Which basically reads as “the government is making a distinction without a difference”. I.e. the reader comes away with the impression that the government really are compensating autism.

We knew then that these parents didn’t want to talk to the media. They didn’t want to speak with Mr. Kirby, to become his latest cause célèbre. And now we know that they still do not want this attention and we read once again that the case was not compensated for autism. From a recent decision:

“Petitioners have made these requests because they have had the misfortune of being frequently contacted by members of the media who mistakenly believe they were compensated for their alternative autism allegation when Petitioners were actually compensated for a Table Injury encephalopathy.”

Given the family’s clear intent to get out of the public’s eye, I am hesitant to put this article out. But perhaps, just perhaps, some of those using this family as part of their constant fight to keep the autism/vaccine idea alive might reconsider.

By Matt Carey

Embryo screening to reduce autism risk: it’s not in the future. It’s now

28 Dec

A news article on screening of embryos came out last week and it was picked up under various titles by various news outlets.

From Australia and New Zealand

Why IVF parents are choosing girls over boys, which google news also listed under Parents call for embryo screening to cut risks.

IVF parents choosing girls over boys

And a different take

Parents Worldwide Prefer Girls To Boys: Will India And China Learn?

From India

Why girls are preferred over boys by IVF parents

Here’s a quote from one of the stories:

Figures from one of Sydney’s top IVF clinics show about one in 20 parents seeking embryo screening are looking to have a female baby to reduce their risk of autism.

Australia does not allow for gender selection of embryos. One can’t tell the IVF team to pick male or female embryos. But one can ask for genetic screening.

University of Sydney senior lecturer in bioethics Chris Jordens said autism had a strong genetic basis, so it was within the guidelines.

And the trend towards genetic screening is strong and building in the US.

At a recent conference in Chicago, he saw a number of United States IVF providers offering parents without the conditions tests for between 180 and 600 common gene mutations, such as the BRCA ”breast cancer” genes.

Gender selection to reduce autism risk is about the most basic, the most crude, genetic screening one could imagine. But it’s real and it’s happening.

The concept of autism prevention through genetic screening, either in IVF or in selective abortions, has been a major ethical question with the push for genetics research in autism in the past decade.

The first step in guiding our societies towards an ethical approach to genetic testing is to present autism accurately. This is one reason why I and others speak out when groups such as Autism Speaks or some parent “advocates” present autism with phrases such as as “These families are not living” or “Life is lived…in despair”. Is life harder, more challenging for my kid? Absolutely. But what message are we sending to prospective parents when we tell them that their lives will be lived in despair or they will no longer be living if they have an autistic child? We are telling them to do whatever they can to avoid having an autistic child. We are telling them to pick and chose their embryos. We are telling them to selectively abort. We are telling the autistics of today that the perfect world (in the view of the majority) is one without them.

My kid and other autistics, children and adults, deserve life. They deserve the right to pursue happiness. Disabled does not equate to despair.

This is why, Autism Speaks, when you portray my kid as less, my life as not lived, I and others will speak out. Autism Speaks, it’s time you started listening.

By Matt Carey

Financial documents for the Canary Party

12 Jul

There seems to be a large number of groups promoting the idea that vaccines cause autism. A large number of groups who share the same principle members. SafeMinds, the National Autism Association, Generation Rescue and others come to mind. A few years ago, another group was formed, this time as a political party: the Canary Party.

The Canary Party is not a charity, so they do not file form 990’s with the IRS. They appear to not be a national political party a they are not listed with the FEC. Recently, a commenter at the Respecful Insolence blog (Narad)found that the Canary Party is organized in Minnesota and files their financial reports there.

Forms have been filed for 2011 and 2012.

The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012. The major contributors are (assuming I did my sums correctly):


Jennifer Larson (Canary Party President), $40,665
Mark Blaxill (Canary Party Chairman), $15,000


Barry Segal (founder of Focus Autism): $30,000
Mark Blaxill (Canary Party Chairman), $10,000

The largest expense is for a “media consultant”, Jennifer Taylor (apparently Ginger Taylor, a blogger).

$36,600 in 2011
$9,000 in 2012

Plus many expenses for advertising and other promotional expenses.

In 2012, travel became a larger expense. For example:

On January 26, 2012, $3,399.79 for expenses with Hyatt/Four-Seasons/Hyatt
(February 2nd 2012 was the date of the “Health Freedom Expo”, where other expenses were incurred)

On February 2, 2012, $1,841.43 for expenses with Hyatt/Ritz

It’s difficult from this to tell how many people were lodged at these hotels for these dates. One expense seems more clear: On 6/15/2012, expenses attributed to Canary Party president Jennifer Larson amounted to $1,541.42 for another Health Freedom Expo hotel stay, this time at the Hilton. Health Freedom Expos are typically 3 day events.

On 10/22/2012 the party hosted a convention, with apparently a tab of $11,382.02 for Hotel/Beverages/Hotel Fees.

Nothing particularly interesting. Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.

Matt Carey

Is autism associated with violent criminal activity?

29 Jun

Short answer: no. Just in case you don’t want to read through my introduction or skip down to the abstract below.

Whenever there is a major news story involving, say, mass murder, it is just a matter of time before speculation arises that the perpetrator was autistic. It happened last year with the Sandy Hook elementary shooting. It happened with the Virginia Tech shooting. It happened after Columbine.

We on the IACC felt it important enough to issue a statement following Sandy Hook. At the end of that statement one can find three studies indicating no association between autism (or autism spectrum disorders) and violent/criminal behavior. And now we can add another study, this one from Sweden:

Childhood Neurodevelopmental Disorders and Violent Criminality: A Sibling Control Study.

Here is the abstract:

The longitudinal relationship between attention deficit hyperactivity disorder (ADHD) and violent criminality has been extensively documented, while long-term effects of autism spectrum disorders (ASDs), tic disorders (TDs), and obsessive compulsive disorder (OCD) on criminality have been scarcely studied. Using population-based registers of all child and adolescent mental health services in Stockholm, we identified 3,391 children, born 1984-1994, with neurodevelopmental disorders, and compared their risk for subsequent violent criminality with matched controls. Individuals with ADHD or TDs were at elevated risk of committing violent crimes, no such association could be seen for ASDs or OCD. ADHD and TDs are risk factors for subsequent violent criminality, while ASDs and OCD are not associated with violent criminality.

The next time such a news story comes out (and, sadly, we can expect that there will be more such events) there will almost certainly be speculation again as to whether the perpetrator is autistic and whether autism was involved in the events. With luck, some journalists will search for evidence on whether violent/criminal behavior before they file their stories.

By Matt Carey

No, the autism “rate” in California did not go down after removing thimerosal from vaccines

26 Feb

I recently attended a talk where the speaker showed autism prevalence by age group for a large HMO in California. The administrative prevalence (fraction of people in the HMO identified autistic) was still going up as of 2010, and the speaker indicated this trend continued to 2012. California is an interesting case study because not only was thimerosal removed from vaccines along with the rest of the U.S. starting in the late 1990’s, but the state enacted a law which required that pregnant women and children under three be given thimerosal free vaccines from 2006 onward. So, with the exception of an an exemption in 2009 and another one right now, even the influenza vaccine in thimerosal free. I bring this up because it is a common argument that somehow the exposure from the flu vaccine is keeping the rate climbing, even though at most this is a lower exposure than that from the 1990’s pediatric vaccine schedule.

This all said, the talk made me dive back into looking at autism prevalence. I decided to finally write about the fact that the autism prevalence in Denmark is higher post thimerosal than while thimerosal containing vaccines were in use. This is completely unsurprising, but a myth has been propogating that it came down and that fact was being hidden.

As it turns out I also checked back with what once was the most common source of autism data for the armchair epidemiologist: the California Department of Developmental Services (CDDS). (I admit one could argue that Special Education data are the most common source for the armchair epidemiologist). The CDDS provides services to disabled Californians and keeps and makes public statistics on their client base. For a long time, every quarter they would come out with a report. For a long time, every quarter these reports would be followed by announcements about how the data showed that vaccines cause autism. One of the people you could always count on was David Kirby (author of the book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, and basically a PR man for some of the vaccine-causation groups). Mr. Kirby went so far as to claim that these data were the “gold standard of autism epidemiology”. Well, the data had their uses (such as identifying and quantifying some of the social influences behind the increase) but it is not an easy task to get results from them. The idea that they represent an accurate count of all those with ASD’s (or even accurately account for all individuals with autistic disorder) is a stretch.

But this didn’t stop David Kirby. Back in 2005, David Kirby was claiming that there was an indication that the administrative prevalence in California was starting to drop, and if the trend continued this was a sign that the removal of thimerosal was having an effect:

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

Well, by 2007 it was clear that the California data were not really showing a drop. In addition, the lack of a drop was published in 2008 as Continuing increases in autism reported to California’s developmental services system: mercury in retrograde.\

The rise in the number of autism clients in the CDDS database was key to the idea of the mercury-induced epidemic. David Kirby (and others) relied on these data and Mr. Kirby even acknowledged that the data should start showing a drop (statement from 2005):

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

The reason is that 5 year olds in 2007 were born after the removal of thimerosal from vaccines. Their exposure to thimerosal was much less than kids in the 1990’s. If the “thimerosal caused an autism epidemic” idea were true, the rates would have to drop. They should drop back to pre-1990 (actually pre 1980) levels if thimerosal were the main, or even a main, cause of the rise.

My recollection is that Mr. Kirby did later backpedal and claim that we would have to wait until some much later date, but it was a weak argument (even by David Kirby standards).

Sorry to keep diving into past history, but one of the strangest moments in the mecury debate (and I can use the term this time, because there was a debate) came in San Diego in 2007. David Kirby debated Arthur Allen in the UCSD Price Center (about 100 yards from my old office, as it turns out). Presented with the fact that even though thimerosal exposure from vaccines had gone down, the California numbers kept going up, David Kirby presented (in something like 100 power point slides!) a four pronged response. First was a claim that California HMO’s had stockpiled thimerosal containing vaccines, so the exposure from vaccines didn’t really go down as much as reports were claiming. Then:

1) A gigantic plume of coal smoke from Chinese power plants has settled on California, depositing lots of mercury and therefore causing the autism numbers in the state to continue to grow.

2) Bad forest fires have put tons of mercury into the air, depositing lots of mercury etc…

3) Cremations (!). The burning of dead bodies with mercury amalgam in their mouths has added even more mercury to the air.

It was a hail Mary pass, to be blunt. Lot’s of handwaving and ignoring the facts.

In 2007, the CDDS changed the way they assessed and counted their clients and they stopped publishing the quarterly reports. As you can imagine, many claimed this was part of a conspiracy to hide the fact that the autism rates were declining in California. And with that the quarterly ritual of misinterpreting and deconstrucing the data came to an end.

All amusing history, sure, but one might ask, why bring all this up again? Well, because it turns out that the CDDS started putting out quarterly reports again in 2011. Yes, there’s a gap of a few years in the data. Yes, some things changed (for example, the CDDS now shows the PDD fraction of autism client base). Given these limitations–and the other limitations in the CDDS data (i.e. they are *not* the “gold standard” of autism epidemiology), what do these data show? The upward trends continue. More individuals served by the CDDS with autism, even though thimerosal was removed from vaccines. Here’s the total–all ages–count for CDDS clients in the autism category (click to enlarge):

CDDS total

Looking at the younger age groups, those whose exposure to thimerosal is much lower than for kids born in the 1990s, there is also an increase. Here is the age 3-5 age group (click to enlarge)

CDDS 3-5

and the 6-9 age group (click to enlarge):

CDDS 6-9

9 year olds in 2012 were born in 2003. Post the removal of thimerosal nationwide. 5 year olds were born in 2007, post thimerosal nationwide and post the California law prohibiting mercury in vaccines for pregnant women and small children. In both groups, the CDDS autism counts are higher than they were in 2002 (the earliest date in the currently available data). Which, in turn, was much higher than the counts from the 1990’s. Here is a figure from the Schechter-Grether paper refenced above:

S-G CDDS paper figure

Which is all a very long way of saying: years ago the evidence was against the thimerosal/epidemic idea; it is even more clear now. For years we heard Mr. Kirby and others talk about how those responsible should step up and admit what happened. Well, the fact is they did. Now it is time for those who promoted the mercury notion to step forward and show they have the guts to admit they were wrong. Because they were. Clearly wrong. It would take a lot of guts to step forward and admit the mistakes. Even though their influence has waned, it would help the autism communities. While I have focused on David Kirby in this discussion, the list is much longer of people who should step forward. I’m not going to hold my breath.

By Matt Carey

Gluyas v Best: autistic blogger wins defamation suit

16 Feb

Long time readers of this site may recall the name John Best. Mr. Best was a very active participant on online discussions, including this blog. Mr. Best is a staunch believer in the notion that autism is mercury poisoning and that chelation is the cure.

Over time Mr. Best’s activities have, in my opinion, increasingly focused on attacking people. For example, Phil Gluyas, an Australian autistic blogger.

Examples of blog posts Mr. Best has published include:

“Is Phil Gluyas the next Adam Lanza?”
“Phil Gluyas’ history of brutality”
“Severely deranged mental case sues me again”

For those familiar with John Best, a defamation case is not surprising. For those who are not familiar with Mr. Best, count yourself lucky.

The judge found in favor of Mr. Gluyas:

The defendant’s responses to the plaintiff’s views have gone well beyond the bounds of ordinary discussion and intellectual debate. The items posted by the defendant on the internet, concerning the plaintiff, contain an extraordinary level of invective and personal denigration, which, in some measure, have been repeated in two letters which he has forwarded to the court in response to the proceedings served on him.

and Mr. Best did not argue that his statements are true:

Taken together, the article, and the imputations to be derived from them, are highly defamatory of the plaintiff. Again, the defendant has not sought to plead and prove the truth of any of those allegations. As such, each of the allegations by him about the plaintiff are false.

This, and much more, led to Mr. Best losing the defamation suit. Instead of the originally requested $10,000, the judge awarded $50,000. With a comment that he could have gone even higher:

Taking into account the foregoing considerations, I consider that it is appropriate to award the plaintiff the sum of $50,000 damages to compensate him for the publications made by the defendant of the plaintiff in Victoria. I should add that, if I had been satisfied that the publication in Victoria of the items, of which the plaintiff complained, had been more widespread than that proven in the evidence, I would have awarded the plaintiff a considerably larger sum of damages

I fear that the ability of someone finding Mr. Best capable of paying anything, much less $50,000, is slim. Accomplishing that from Australia might be even more difficult. It is an attempt to get blood from a turnip. But, Mr. Gluyas has been awarded the right to draw blood from this turnip and that alone is a victory.

There is room to be critical of the actions of others online. John Best crossed that line. To quote the TV show “Friends”, “you’re so far past the line that you can’t even see the line! The line is a dot to you!”

By Matt Carey

Texas Observer article: Autism Inc.: The Discredited Science, Shady Treatments and Rising Profits Behind Alternative Autism Treatments

12 Feb

The Texas Observer published an article two weeks ago: Autism Inc.: The Discredited Science, Shady Treatments and Rising Profits Behind Alternative Autism Treatments. In the article, author Alex Hannaford discusses the alternative-medicine/vaccine-causation community, the therapies they promote and the lack of evidence behind them. Mr. Hannaford argues that Texas, in particular, is a center for this movement:

To compound the problem, a host of celebrities act as unpaid marketing reps for these unproven treatments, touting a pervasive (but incorrect) belief that autism is caused by childhood vaccines. This misinformation campaign has led, in the last few years, to a decline in the number of children receiving lifesaving inoculations. And Texas has become a center for alternative autism treatment and the anti-vaccine crusade.

Texas, of course, is the home of Andrew Wakefield. Mr. Wakefield, as most will recall, made his name in the autism community promoting the idea that the MMR vaccine was causal not only in some autism cases, but in giving rise to the rise in autism diagnoses observed in the U.S. and the U.K.. Mr. Wakefield’s primary paper has been retracted, his license to practice medicine pulled for unethical practices, he has resigned his position at what was then called “Thoughtful House” and multiple studies have demonstrated the lack of substance in his ideas.

Mr. Hannaford discusses much of this, including extensive quotes from Michael Fitzpatrick, a U.K. autism parent who has been a long-time critic of Andrew Wakefield’s work, James Laidler, whose work with the alternative medicine movement has been documented and, while not calling him out by name, Brian Deer‘s work in the BMJ is also cited. Mr. Hannaford also cites Wakefield supporters Jane Johnson, for whom Thoughtful House is now named (the Johnson Center), filmmaker Robert Rodriguez and, of course, Jenny McCarthy.

I am unconvinced that Texas is a particular hotbed of the alt-med/vaccine-focused autism community. But perhaps this is colored by the fact that my home town is now headquarters for TACA, AutismOne, SafeMinds and more. However, the idea that a great deal of untested and scientifically unsound “therapy” is promoted to the autism parent community is something I do not contest in the least.

Mr. Hannaford concludes his article, citing Dr. Jody Jensen, director of research of the Autism Project at the University of Texas:

“We are not doing anything special,” Jensen said. “What we are doing is providing the resources to allow these kids to be safe and to explore and experience things like every other child. That’s what’s often lacking. It’s about trying to restore some sense for them of what a typical childhood looks like.”

That is what parents of kids with autism disorders want more than anything for their children: a normal childhood. Those children just might have a fighting chance to get it—if they don’t have to undergo therapies and treatment unsupported by any scientific evidence, therapies and treatments that are time-consuming, costly, and benefits only to the people administering them.

By Matt Carey

IACC to hear about Minnesota Somali Project, Optimal Outcomes and National Children’s Study

28 Jan

The U.S. Interagency Autism Coordinating Committee (IACC) meets tomorrow (January 29th). The agenda is listed online and below.

The committee and the public will hear updates on the Minnesota Somali Autism Project–a project to explore whether there is a high prevalence of autism in the Minnesota Somali community and, if so, why. The autism prevalence in Puerto Rico ranks high for the U.S., even though the territory population is largely Hispanic and Hispanics typically have a low reported autism prevalence in the U.S.. An update on the autism prevalence in Puerto Rico will be presented. A recent study on individuals who achieved what the authors refer to as “optimal outcomes” will be discussed. Also, a study of health outcomes in children with autism and their families will be presented.

The IACC will also discuss plans for moving forward. There are many areas I would like to see some focus applied to. But three I have proposed and hope to discuss are (1) the needs specific to children and adults with autism and intellectual disability and/or communication difficulty and (2) difficulties in delivery of medical services to autistics and (3) autism and epilepsy. It is too late for comments to be included in the record for this meeting, but if you have opinions of where autism research and policy should be moving towards, send the IACC comments at

Here is tomorrow’s agenda:

10:00 a.m. Welcome, Roll Call and Approval of Minutes
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:05 Science Update
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:20 Round Robin

10:50 Centers for Disease Control and Prevention (CDC) Minnesota Somali Project Update
Amy Hewitt, Ph.D.
Director, Research and Training Center on Community Living
University of Minnesota

Mashalyn Yeargin-Allsopp, M.D.
Chief, Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention

11:20 Update on Autism Prevalence in Puerto Rico
Jose Cordero, M.D.
Dean, Graduate School of Public Health
University of Puerto Rico
Member, IACC

11:35 Lunch

1:00 p.m. Oral Public Comments

1:30 Optimal Outcomes in Individuals with a History of Autism
Deborah Fein, Ph.D.
University of Connecticut
Board of Trustees Distinguished Professor Department of Psychology
Department of Pediatrics

2:00 Study of Health Outcomes in Children with Autism and their Families
Anjali Jain, M.D.
The Lewin Group

Craig Newschaffer, Ph.D.
AJ Drexel Autism Institute, Drexel University

2:30 National Children’s Study Update
Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
Member, IACC

2:50 Break

3:05 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan A. Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination
Executive Secretary, IACC

•2012 Strategic Plan Update
•2013 Strategic Plan Update Process
•2012 Summary of Advances
•2011-2012 Portfolio Analysis
•Other Activities

4:15 Public Comments Discussion Period

4:45 Wrap-Up

5:00 Adjournment

By Matt Carey

Note: I serve as a public member to the IACC. However, all comments and opinions, here and elsewhere are my own.
Note: I made small edits after I published this article to include the third area I would like to see get greater focus.

Is Slate misrepresenting the Neurodiversity movement?

22 Jan

In a word, yes. In, Is the Neurodiversity Movement Misrepresenting Autism?, author and autism parent Amy Lutz argues that the neurodiversity movement is essentially dividing the autism community between “high-functioning” adults and parents of “low-functioning” children. Shannon Rosa clarifies this point for Ms. Lutz in Why Did Amy S.F. Lutz Attack the Neurodiversity Movement? That is a more full discussion of the article than here, and I encourage readers to read Ms. Rosa’s account.

I’ll consider two segments of Ms. Lutz’ article. First, what is essentially her conclusion:

What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed.

The author doesn’t see neurodiversity as a “real” rights movement because, in her view, neurodiversity implies that “we are all the same, with ‘intact minds’ that just need to be accessed.”

To anyone who has spent any time seriously considering the neurodiversity movement, the above statement is an obvious misconception. A straw-man argument, if you will. Just start with the name: neurodiversity. How one gets from a diversity movement to “we are all the same” is beyond me. Even after reading the article. Yes, I see the argument the author tried to make. I also know that her argument is full of misconceptions and, frankly, attacks.

I am more moved by ideas than movements, so I don’t use the term neurodiversity much. However, I can put my view simply: you and I think differently, but we are equals. You can derive a lot from that, but it’s one way of seeing “neurodiversity”.

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world.

Let’s take this in two pieces. First, her “overwhelming” evidence is basically arguments that some of the more known names of significantly challenged adult autistics are not what they present themselves to be. An easy argument to make if you misrepresent how these adults have represented themselves. Claiming that Amanda Baggs presents herself as typical of autistic development, for example, is plainly false. It is a rehash of old, tired attacks.

Now to the more important part the supposed division “between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world”.

First off, didn’t she say in the quote above that Neurodiversity proponents see people as being “all the same” and that if they were a “real” diversity movement, they would acknowledge that there are differences? But in this quote neurodiversity proponents believe autism is a “different” way of thinking.

Leaving aside the logical inconsistencies of the article, this line is an old false-dichotomy argument. Who says there is a division between disability and difference? A disability is a difference. Another way to say it is that autism is a disability and a difference. It’s redundant in my opinion, but sometimes redundancy is needed. Would I say “not worse”? Yes. Does that mean I deny the disability? That I don’t acknowledge the challenges posed by autism? That I don’t believe life is more difficult for autistics than non-autistics? No, no and no.

As I read it, Ms. Lutz’ comment implicitly states that disability is worse than not being disabled. From one online dictionary, I get this as the number one definition for “worse”: of more inferior quality, value, or condition. I have no reservations saying that my child has huge challenges, many of which will not be overcome even with great effort. Is any part of my child of “inferior quality, value, or condition”? No. I see different, not less. Not inferior. In need of great support, yes. But as an equal, not out of pity and without taking away rights and dignity.

Ms. Lutz finishes her article by positing that neurodiversity propenents act out of some level of ignorance, fed by what she asserts is misinformation about what autism really is. I believe Ms. Lutz has some ignorance to overcome on her own. She closes with a statement about “kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors” and how “any portrayal of autism that glosses over their profound disability closes the door on them all over again.” I would say that first we need to acknowledge that (a) this is not confined to children and (b) autism and dangerous behaviors can come without intellectual disability, and that segment of the population should not be glossed over either. But that aside, consider the basic question of how do we move forward with a very diverse population and see that all are served appropriately? The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population. But the way forward is not to claim some schism between “high-functioning” autistics and parents of those with different challenges. My experience is that once a person sees a strong civil rights aspect to autism–and disability in general–one sees the need to work for all in the population.

By Matt Carey


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