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.
Archive | August, 2012
From Bill Gates, A Toilet Challenge Spills Forth
16 AugWarning: 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.
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By Matt Carey
Shameful, a documentary by Alex Plank and Noah Trevino
16 AugAlex 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.
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By Matt Carey
Medical debate: Should autism block a man from getting a heart transplant?
15 AugEarlier 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 AugDavid 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.
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by Matt Carey
How Americans would slim down public education
12 AugWith 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 AugThe 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:
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.
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by Matt Carey
The 15-Year Fallout From One Man’s Lie About Vaccines
4 AugOn 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.
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by Matt Carey
Wakefield vs BMJ lawsuit dismissed on jurisdiction grounds
3 AugAndrew Wakefield’s lawsuit against the British Medical Journal (BMJ), Brian Deer and Fiona Godlee has been thrown out based on a lack of jurisdiction. Put plainly, he doesn’t have the standing to sue any of the parties involved as they are outside the U.S..
Had the lawsuit not been dismissed the BMJ team was prepared to fight the case on the facts. This is evidenced by vigorous response they made to the lawsuit, as well as supplemental filings.
Mr. Wakefield may have the opportunity to appeal the dismissal.
Mr. Wakefield’s home town newspaper, the Austin Statesman, has reported already on this in Wakefield can’t sue U.K. journal, editor and reporter in Texas
They write:
Godlee and Deer called the case frivolous and said it fit a pattern of Wakefield trying to silence his critics with lawsuits.
“We’re very pleased with the court’s decision,” said defense attorney Marc Fuller at Vinson & Elkins in Dallas. “We stood behind the reporting in the case, and from our perspective, it’s over.”
The comment above refers to previous attempts by Mr. Wakefield to sue Brian Deer. In one case, Mr. Wakefield dismissed his own lawsuit and was required to pay the legal fees for Mr. Deer. Had the current defamation case gone forward, Mr. Wakefield faced an anti-SLAPP motion based on a new Texas law which had the potential to cost Mr. Wakefield legal fees in this case. Based on the amount of documents supplied, the Texas suit has likely already cost a great deal of money, and was on track to be a very expensive endeavor. Mr. Wakefield may be fortunate to have gotten out early.
No comment yet on the Wakefield Justice Fund website. This site has not been updated a much anyway, so this is not surprising.
Since this is a dismissal on jurisdiction grounds, we do not have a ruling as to whether it is defamatory to call Mr. Wakefield a “fraud” or “fraudster” based on his research activities (such statements were part of Mr. Wakefield’s defamation suit), which resulted in his Lancet paper being retracted and which activities were deemed unethical by the General Medical Council.
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by Matt Carey
What projects are being funded in autism research? Part 2: Expanded Surveillance
3 AugAt the IACC meeting OARC released it’s new IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool. There are many ways to explore what research is being performed. Since the CDC autism prevalence estimates get a lot of attention, it seemed valuable to see what is in the pipeline with them. The CDC estimates are made through ADDM, the Autism and Developmental Disabilities Monitoring Network, which is largely sites in various states working with the CDC, not the CDC itself.
One can search for ADDM for 2009 and 2010 projects.
In 2009 there were projects ongoing in Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin, as well as the Metropolitan Atlanta Developmental Disabilities Surveillance Program/Autism and Developmental Disabilities Monitoring (ADDM) network – Georgia.
13 states plus the Metro Atlanta study.
The latest prevalence estimate report from the CDC included 14 sites: Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia, and Wisconsin. West Virginia appears to no longer be a part of the study.
In 2010 there were projects ongoing in 11 states plus the metro Atlanta site. Florida and Pennsylvania are no longer funded.
Now, here’s where it get’s interesting. At least to this reader. There are “expanded” projects in 2010:
Through surveillance of ASD among 4-year-old children, CDC can better understand the population characteristics of young children affected by ASDs and better inform early identification efforts.
Arizona, Missouri, New Jersey, South Carolina, Utah and Wisconsin are starting to count 4 year-olds as well as 8 year olds. This will be a good thing. As they say, this will inform early-intervention efforts. This will also benchmark 4 year olds, then (I assume) 4 years later find out what that same cohort looks like.
The CDC autism prevalence estimate reports find a large number of autistic students unidentified even at age 8. They are identified through the records review of the ADDM. This and other studies raise the question of what factors are involved with delays in autism diagnosis. A study is ongoing to answer just that question: Understanding the delay in the diagnosis of autism. The study has already resulted in numerous publications.
The Strategic Plan calls for even more expansion of the ADDM:
Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015.
Expanding to include adults is a good idea, but extremely tough. The current method uses educational and medical records of students. Obviously educational records will not be available for adults. This will make it difficult to make comparisons between adults and children in the same state. Most likely, the estimate will be lower than the actual autism prevalence in adults.
There is a study by the Mayo Clinic on adult autism prevalence and at least one more I am aware of.
Surveillance efforts are expanding into better identification of young children outside of ADDM. Two studies, the California Monitoring of Early Childhood Autism (CA-MECA) and the First Words Project: Implementing Surveillance to Determine the Prevalence of ASD project in Florida. Both are looking at young children (<4 years old) or infants (as young as 18 months). Both studies have been ongoing since 2006.
Studies are ongoing outside the U.S.. Including an Autism Speaks funded study in Kwa Zulu Natal (South Africa). KwaZulu-Natal (KZN) Autism Study will “…test how best to identify and assess children with ASD in the Zulu language and culture, explore the prevalence of autism in South Africa, and further explore the hypothesized relationship between autism and HIV infection.” The Korea Autism Study (also funded by Autism Speaks), which last year announced a prevalence of 2.62% using a whole-population screen, is ongoing.
Surveillance projects will generate questions, and that has definitely happened with autism surveillance work. Questions of why the estimated prevalences are increasing and why some groups are identified later than others are a couple of the big ones. Based on this quick look through the ongoing projects, there appear to be a number of projects in the pipeline which will probably shed some light on existing questions as well as spark new ones.
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by Matt Carey
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