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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.

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

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

Wakefield vs BMJ lawsuit dismissed on jurisdiction grounds

3 Aug

Andrew 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.


by Matt Carey

What projects are being funded in autism research? Part 2: Expanded Surveillance

3 Aug

At 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.


by Matt Carey

Questions Surround Handling of Taser Assaults on Disabled Patients

1 Aug

This story is out of California. Specifically, the story “Questions Surround Handling of Taser Assaults on Disabled Patients” comes from the California Report, a public radio program.

Someone using a stun gun like a cattle prod assaulted a dozen patients at the Sonoma Developmental Center last fall, inflicting painful thermal burns on their buttocks, arms, legs and backs.

The center’s in-house police force, the Office of Protective Services, had a suspect from the start. An anonymous whistle-blower called a tip line in September 2011 and accused Archie Millora, a caregiver at the Sonoma center, of abusing several profoundly disabled men with high-voltage probes.

The parallels between this and the Judge Rotenberg Center are obviously going to be made. Except that this isn’t part of any sanctioned “therapy” and, unlike JRC, there is no constant video monitoring.

What does exist is an internal police force. Which “often fails to conduct basic police work”:

As part of an ongoing investigation, California Watch has detailed how the institutions’ internal police force, created by the state to protect the vulnerable residents at these state homes, often fails to conduct basic police work when patients are abused and harmed.

The full text of the story is online and the audio is here:


by Matt Carey

Scarborough remarks unite much, but not all, of autism communities for a brief moment

26 Jul

Joe Scarborough is in the news. Yes, he works in the news, but he’s in the news for comments he made about the Aurora shooter:

“You have these people that are somewhere, I believe, probably on the autism scale, I don’t know if that’s the case here, but it happens more often than not, people that can walk around in society, that can function on college campuses, can even excel in college campuses, but are socially disconnected. I have a son who has Asperger’s who is loved by everyone in his family and who is wonderful, but it is for those that may not have a loving family and a support group and may be a bit further along on the autism spectrum, an extraordinarily frustrating, terrible challenge day in and day out. and so, I do think, again, I don’t know the specifics about this young man, but we see too many shooters in these type of tragedies bearing the same characteristics mentally.”

This has brought together various and disparate parts of the autism communities asking for a retraction. From the Autistic Self Advocacy Network (ASAN) to the Age of Autism blog. AoA even linked to a petition set up by Rachel Cohen-Rottenberg.

Such unity of voice should be telling Mr. Scarborough something.

I don’t think he got the message, though. In a follow-up to that statement, Mr. Scarborough wrote:

During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.
The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently.
I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day

That nod to Autism Speaks brought on some criticism which demonstrates how this story shows the divisions within the autism communities even in this story.

Mediaite.com (a site I was previously unaware of) has at least three articles on the Scarborough story:

Autistic Journalist Demands Joe Scarborough Retract Comments Linking Autism To Aurora Shooting

Followed by these two with a partial focus on Autism Speaks:

Autism Speaks Whispers Response To Joe Scarborough’s Aurora Slur

and

First Autistic Presidential Appointee Lambastes Joe Scarborough And Autism Speaks

I thought I’d never heard of Joe Scarborough before. I forgot that he is or was a supporter of the thimerosal-causation idea and had interviewed Robert F. Kennedy Jr. on Kennedy’s “deadly immunity” articles (these ran in Salon.com and Rolling Stone. If you are unaware of Deadly Immunity, the piece had five corrections after being published and Salon has since retracted the article.

A comment from Joe Scarborough in that interview:

Maybe it’s five years from now. Maybe it’s 10 years from now. We are going to find out Thimerosal causes, in my opinion, autism.

It’s been more than five years since then and the support for the idea has only gotten worse.

I am actually somewhat surprised that Mr. Scarborough received such criticism from those promoting the notion of mercury causation.

For a brief moment, a call for respect for autistics trumped support for an old ally of the mercury causation movement.


by Matt Carey

note: I made a few corrections, including changing the title, to this piece shortly after publishing it.