Announcing Release of the final IACC/OARC Autism Spectrum Disorder Research Publications Analysis Report: The Global Landscape of Autism Research

17 Aug

The Office of Autism Research Coordination has published a final version of the IACC/OARC report “The Global Landscape of Autism Research”. The announcement is below:

The Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination (OARC) in collaboration with Thomson Reuters, Inc. are pleased to announce the release of the final IACC/OARC Autism Spectrum Disorder Research Publications Analysis Report: The Global Landscape of Autism Research. This final report replaces the pre-publication draft, which was released on July 9, 2012. The final report contains all final content, including high resolution figures and supplementary appendix information. If you have a hard copy of the pre-publication draft and would like to replace it with a hard copy of the final report, or if you would like to order a free copy of the final report, please send a note to IACCPublicInquiries@mail.nih.gov.

This inaugural report describes several key aspects of worldwide ASD research publications, which can be used to inform autism research strategic planning efforts. The report includes data encompassing biomedical, biological, behavioral, clinical, educational, social sciences, and health services research. ASD-related research articles published between 1980 and 2010 were analyzed to identify historical trends and publication outputs across the seven critical research areas of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. Information found in research publications was also used to assess the institutions conducting ASD research, funding organizations supporting the research publications, and the extent of collaboration between authors from different countries and research institutions. Additionally, measures such as citation counts were used as an assessment of the impact of this published research. By analyzing publications as a major output of the autism research field, this report complements the annual IACC Autism Spectrum Disorder Research Portfolio Analysis Report, which tracks major US inputs or investments into autism research, and highlights trends that can provide a useful perspective on the development and current state of ASD research. A fully formatted, downloadable PDF of the IACC/OARC Publications Analysis is available on the IACC website at http://iacc.hhs.gov/publications-analysis/july2012/index.shtml.”

Note: I serve as a public member to the IACC, but all opinions expressed here and elsewhere by me are my own.


By Matt Carey

Following Ezra

17 Aug

I happened on Following Ezra by chance. It was available as an electronic book from my library. I downloaded it and started reading it and was very happy I had.

Following Ezra depicts itself as: What One Father Learned about Gumby, Otters, Autism and Love from His Extraordinary Son. The author, Tom Fields-Meyer, has written for years including for People Magazine, so he knows how to tell a story.

An often quoted incident from the book involves when he first heard his son was autistic:

When Tom Fields-Meyer’s son Ezra was a toddler and showing early signs of autism, a therapist suggested that the father allow himself time to mourn.
“For what?” he asked.
The answer: “For the child he didn’t turn out to be.”

Mr. Fields-Meyer didn’t feel like mourning (which is a rather extraordinary take on his own). His memoir covers about a decade. A decade of discovery and growth for his son and for himself. It’s a memoir, not a preachy message book. But the underlying theme Mr. Fields-Meyer has is one of acceptance and

Here is an excerpt I bookmarked:

I understand the instinct so many parents have to fight battles, trying to nudge children towards more mainstream pursuits. I gauge our other sons’ progress by the kinds of standard measurements most modern mothers and fathers use: We have watched Ami’s evolution through the ever-larger trophies he collects at the end of each baseball and soccer season, a series of student government positions, and friendships; Noam rises through the ranks at the Karate studio, each new belt and patch marking another level of accomplishment, and makes his way through the Suzuki violin book, showing ever-increasing ability and focus. Tracking Ezra’s advancement is different. With each passing month and year, he grows more singular.

At some point I realize that is precisely the way to build a relationship with my son: through the trains, the Gumby figures, the endless trail of red. Instead of seeing his obsessions as traits to change, Shawn and I come to view them as opportunities to build a bond–a quirky, unpredictable, whimsical bond, to be sure, but a strong one. Instead of lamenting that we can’t have an ordinary conversation with our son about the Dodgers or sitcoms or what happened in school that day, we join him. We follow his lead.

Sometimes that brings me to unexpected places. I find myself sending my hard-earned dollars via Paypal to a guy in Missouri selling decadesold clay-animated characters, or standing in line at the Target story, my shopping cart filled with red jerseys and pajamas. Sometimes I pause and wonder whether we are doing the right thing.

Over time, though, I come to realize a reward: Ezra understands that another human cares about what he cares about. Slowly, over time, our connection grows, and so does his potential to have other relationships with people. relationships based on something more than Gumby.

Like I wrote above, it isn’t a book about acceptance, but a book about a family that incorporated acceptance into their lives from an early point. There is a great deal of misinformation about acceptance (it’s “giving up”, for example), that it’s good to have a book like this to point people to put a real-life picture to the idea.

I’ll admit that I’m only about 1/2 way through the book. Given the way that my life often takes me away from side projects–blog posts, finishing books (what was I thinking buying the Shelby Foote book on the Civil War?) and the like–I thought it good to get something out now. The book only seems to be getting better the more I read.


By Matt Carey

Books and Movies

16 Aug

In the process of moving from being self-hosted to being hosted by wordpress.com, we lost the list of books that Kev had compiled over the years. I’ve started rebuilding that list and will try to go through some new books in posts in the near future. The page Books and Movies is already up and will grow with time. Feel free to offer recommendations or to remind me of books that were on the previous list.

From Bill Gates, A Toilet Challenge Spills Forth

16 Aug

Warning: this article isn’t about autism. It isn’t about that all too common side topic of vaccines either. Not directly, at least. This article is about Bill Gates. And toilets.

Bill Gates is attacked regularly online by a small but vocal segment of the autism parent community. Why? Because he has put a large part of his fortune towards vaccines. Vaccine research and bringing vaccines to the developing world.

One common complaint is that he is misspending his money. That the developing world needs clean water, better hygene, and good food. It’s a false dichotomy; an either/or argument that makes a division where none exists. Why not both clean water and vaccines, for instance.

Well, Mr. Gates is putting another chunk of his money where his mouth is. What’s a major source of water contamination? Human feces. Why? No good toilets.

From NPR’s From Bill Gates, A Toilet Challenge Spills Forth:

NPR.org, August 15, 2012 · SEATTLE (AP) — These aren’t your typical loos. One uses microwave energy to transform human waste into electricity. Another captures urine and uses it for flushing. And still another turns excrement into charcoal.

They are part of a Bill & Melinda Gates Foundation competition to reinvent the toilet for the 2.5 billion people around the world who don’t have access to modern sanitation.

This is what divides the Gates Foundation from false "vaccine safety" advocates. Well, this and billions of dollars. I haver never read someone write, "instead of vaccines we should focus on clean water that’s why I donate money to organization X which is bringing clean water to the developing world“. I’ve emphasized the part that is missing. Perhaps someone will be kind enough to point me to the “vaccine safety org” that is putting a major effort into an alternative preservative to thimerosal or improving cold chain access so that clinics in the third world don’t need preserved vaccines. I’ve seen some passing reference to an existing alternative preservative, but rarely and without real support for the idea.

I’ll be watching to see how this is twisted into an attack on Mr. Gates. His vaccine work has been twisted into a claim that he’s attempting genocide.


By Matt Carey

Shameful, a documentary by Alex Plank and Noah Trevino

16 Aug

Alex Plank is possibly best known in the autism communities for his work with WrongPlanet.net as well as his work as a filmmaker. Mr. Plank has a new project in film making: a documentary about autism in France: Shameful, a film about autism in France.

In France there are still some views on autism which are controversial, to put it mildly. For example, the idea of “packing” as a therapy. Packing has recently been the focus of a concensus statement

Against le packing: a consensus statement.
Amaral D, Rogers SJ, Baron-Cohen S, Bourgeron T, Caffo E, Fombonne E, Fuentes J, Howlin P, Rutter M, Klin A, Volkmar F, Lord C, Minshew N, Nardocci F, Rizzolatti G, Russo S, Scifo R, van der Gaag RJ.

If you are unfamiliar with the names above, I’ll point out that they represent some of the most respected names in autism research. People who have come out publicly against this practice.

Back to Shameful: here is a description of the documentary:

About Shameful

Psychoanalysts in France have stated that Autism is a psychosis caused by the mother’s sexual issues. France refuses to provide families any support.

We traveled throughout France documenting countless families struggling to get support for their autistic children.

Shameful recounts the horrendous situations these families have been forced into by their country’s lack of support and the disinformation spread by experts there.

Many French parents have had to send their young children away to Belgium.

One study estimated that 80% of french autistic children are not even allowed to go to school.

and the trailer:

I hope this shines some light on practices and viewpoints which need to change. Now.


By Matt Carey

Medical debate: Should autism block a man from getting a heart transplant?

15 Aug

Earlier this year a story came out about a child being denied a transplant due to developmental disability. Now we have a story of an autistic adult possibly being denied a heart transplant due to autism. In Medical debate: Should autism block a man from getting a heart transplant? we read:

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

How characterizing him as having a “flawed mind” is helping, at all, is a good topic for discussion on its own.

Mr. Corby’s mother has started a change.org petition:

My son Paul was denied placement on the heart transplant list because of his mental disability. The doctor was more interested in the fact that he could not name all his medications (he takes 19 at the present time) and the Princess Peach doll he carries for comfort, than the fact that he has never smoked or drank alcohol. Where will the discrimination end?

Paul is a wonderful boy that has taken his mental and physical illness in stride. He has just completed his first novel geared toward preteens. We are now in the process of having it self-published. This is really the only thing that keeps his mind off of his mortality. How do I explain to him why he can’t have a new heart?

Can you help us tell the Transplant Committee they are wrong and he deserves the chance to grow old and watch his two young nephews grow up?

The petition has over 11,000 signatures so far.

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By Matt Carey

David Geier ordered to pay $10,000 for practicing medicine without a license

13 Aug

David Geier is the son in a father-son team which ran a clinic purporting to treat autism through such unproven and biologically implausible methods as chelation and lupron.  In addition, the team produced questionable quality research promoting the link between autism and vaccines.  While Mark Geier holds an M.D., David Geier holds no degree nor other qualifications in medicine.

The Maryland State Board of Physicians charged Mr. Geier with practicing medicine without a license and, recently, the board found him guilty and fined him $10,000. Mr. Geier has the right to appleal. More details can be found in the Board’s order.


by Matt Carey

How Americans would slim down public education

12 Aug

With economic troubles in the U.S. and worldwide continuing for years, schools are facing tough decisions.  A recent survey, How Americans would slim down public education, in the U.S. taps into the public’s support for education in general and also for special education. 

With budget shortfalls predicted for schools (at least in the area I know best: California) people are thinking of how to react in case of budget shortfalls.  There is no support for increasing taxes to support schools, instead “dramatically changing how [schools] do business”:

End Business as Usual
Which would be the best approach for your district to take if it was facing a serious budget deficit?

48% Cut costs by dramatically changing how it does business.

26% Change as little as possible; wait for times to get better

11% Rely on tax increases

7%  Something else

8%  Don’t know

Which begs the question of how dramatic changes might affect special education.  While there is broad support for special education, there is a strong sentiment that there are children in special ed who do not belong:

When it comes to budget cuts, special education is not immune as far as most Americans are concerned. That’s not to say the commitment of Americans to educate children with special needs is waning—it’s not. But they have concerns about the growth, cost, and effectiveness of serving these kids well.

The overwhelming majority of the public, 83 percent, believes that “the public schools have a moral obligation to educate kids with special needs and learning disabilities, even if it’s more difficult and expensive to do so.”

76 percent believe that “too many students are being mislabeled as having special needs when they just have behavior problems or weren’t taught well in the first place.”

71 percent believe that special education programs should be “evaluated according to whether they help students learn—when students don’t learn, the programs should be replaced

The public is split on supporting the law’s provisions that cost should not be a factor in deciding a special education placement:

According to federal law, districts are required to provide special education services, but they are not allowed to consider the costs of those services. Do you think districts should be allowed to weigh costs when considering which special education services to choose, or do you think the law should be left as is?

44 Districts should be allowed to weigh costs when considering which special education services to choose

47 The law should be left as is

9 [Vol.] Don’t know

There is a lot more discussion in the report on ways schools could (e.g. cut pay, change retirement) and should not (e.g. lay off faculty) reduce costs. More can be found in the report.

Most people think that their schools are an asset to thrir community , but also that the schools have been hit hard by the recession and (77%) that the financial problems will last a long time.

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By Matt Carey

Comparing Symptoms of Autism Spectrum Disorders in a Developmentally Disabled Adult Population Using the Current DSM-IV-TR Diagnostic Criteria and the Proposed DSM-5 Diagnostic Criteria

8 Aug

The proposed change in diagnostic criteria for autism (from DSM IV to DSM 5) has been a topic of much discussion. To put it mildly. Little, if any, data has been available on how this change may affect the adult population.

A recent study seeks to address that void:

Comparing Symptoms of Autism Spectrum Disorders in a Developmentally Disabled Adult Population Using the Current DSM-IV-TR Diagnostic Criteria and the Proposed DSM-5 Diagnostic Criteria

Reseaerchers studied autistic adults with intellectual disability. They found that 36%  of their study population would lose their diagnosis under DSM 5.

The American Psychiatric Association is making changes in the autism spectrum disorder (ASD) criteria for the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). In order to examine potential effects of the changing of the criteria, 330 adults with intellectual disability (ID) from two developmental centers were examined. However, due to the fact that the DSM-IV-TR/ICD-10 Checklist does not contain one of the restricted behavior items listed in the current proposed DSM-5 criteria, 41 participants were eliminated from the study. An additional 62 individuals were randomly removed from the study so that no one group was 1.5 times larger than any other group. This left a total of 227 individuals. These individuals were divided into three groups: those who met criteria for an ASD according to only DSM-IV-TR criteria, those who met criteria according to the proposed DSM-5 criteria, and controls with ID not meeting ASD criteria according to either diagnostic system. After statistical analysis, individuals in the DSM-5 group evinced significantly greater overall ASD core symptoms than those in the DSM-IV-TR group or controls. In addition, those in the DSM-IV-TR group exhibited significantly greater overall ASD core symptoms than those in the control group. Furthermore, we found that the percentage of adults diagnosed with ASD declined by 36.53% when using DSM-5 as compared to DSM-IV-TR criteria. Implications of these findings are discussed.


by Matt Carey

The 15-Year Fallout From One Man’s Lie About Vaccines

4 Aug

On the same day that Andrew Wakefield’s lawsuit against the BMJ, Brian Deer and Fiona Godlee was dismissed, The Atlantic has a piece: The 15-Year Fallout From One Man’s Lie About Vaccines . Who is the one man, and what is the lie? From The Atlantic:

Consider the widespread fear of childhood vaccinations. In 1998, the physician Andrew Wakefield published a study in The Lancet linking the measles, mumps, and rubella (MMR) vaccine to autism. This study has since been judged to be an ‘elaborate fraud,’ and Wakefield’s medical license has been revoked.

The consequences of Wakefield’s dishonesty would have been bad enough. But the legacy effect of other big lies has thus far made it impossible to remedy the damage he has caused. Given the fact that corporations and governments sometimes lie, whether to avoid legal liability or to avert public panic, it has become very difficult to spread the truth about the MMR vaccine. Vaccination rates have plummeted — especially in prosperous, well-educated communities –and children have become sick and even died as a result.

An unhappy truth of human psychology is probably also at work here, which makes it hard to abolish lies once they have escaped into the world: We seem to be predisposed to remember statements as true even after they have been disconfirmed.

Apparently The Atlantic didn’t feel the need to wait for a Texas Judge to rule before using Mr. Wkefield’s work as a prime example of a “big lie”.

The Atlantic is right. It is hard to spread the truth about MMR. Just check the comments for the article.


by Matt Carey