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Republican Mark Ewing: “there are certain individuals that are just not going to benefit from an education”

27 Aug

Mark Ewing is a republican politician in Alaska. He is running for the state house. He recently expressed views on special education which I would politely say I disagree with:

” We are spending millions and millions of dollars educating children that have a hard time making their wheelchair move and, I’m sorry, but you’ve got to say, ‘no’ somewhere. We need to educate our children, but there are certain individuals that are just not going to benefit from an education”

I wanted Mr. Ewing to elaborate on this statement so I sent him the following email:

Mr. Ewing,

Can I confirm this quote attributed to you:

” We are spending millions and millions of dollars educating children that have a hard time making their wheelchair move and, I’m sorry, but you’ve got to say, ‘no’ somewhere. We need to educate our children, but there are certain individuals that are just not going to benefit from an education”

If this is accurate, can you elaborate? How do you define “benefit from education”? I suspect someone has discussed with you by now how many people in wheelchairs, even those with the motor difficulties that might prohibit controlling the chair, are cognitively capable of “benefiting” from education academically. What would be your position on a public school educating nonverbal child to give that child the ability to communicate more effectively, even if that child may not be “benefiting” in the academic sense?

Could I ask how you fit the above sentiment with the Alaska Republican Party platform, which states: ” Parents have the primary right, as well as the duty, to control and direct their children’s education”. Wouldn’t the state deciding that a child should not be educated conflict with the platform?

I thank you for your time,

No response as yet.

Mr. Ewing isn’t completely disconnected from the disabilities community. His son reportedly had “mental health problems”.

Mr. Ewing apparently tried to rewrite history, claiming he said something slightly different. His hometown paper posted the audio, together with a commentary on the alleged blameshifting Mr. Ewing has engaged in.


By Matt Carey

Grants will fund pre- and post-doctoral autism research fellowships

24 Aug

The Autism Science Foundation has opened the application process for pre- and pos-doctoral Training Award. The announcement is below:

Today we opened our applications process for the 2013 Pre- and Post-doctoral Training Awards for graduate students, medical students and postdoctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders. In the past three years, ASF has funded over $700,000 in pre- and post-doctoral grants.

“Pre- and post-doctoral fellowships not only build our knowledge about what causes autism and how best to treat it, but also build our future by encouraging outstanding young investigators to dedicate their careers to autism research,” said Alison Singer, president of ASF.

“We are so grateful to all our donors and volunteers who have come together to support autism research and who make these grants possible,” said Karen London, co-founder of ASF.

The proposed training must be scientifically linked to autism. ASF will consider for training purposes all areas of related basic and clinical research including but not limited to:

Human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders)
Neurobiology (anatomy, development, neuro-imaging)
Pharmacology
Neuropathology
Human genetics/genomics
Immunology
Molecular and cellular mechanisms
Studies employing model organisms and systems
Studies of treatment and service delivery
Applications must be received by November 16, 2012. Additional information about the RFA can be found at www.autismsciencefoundation.org/ApplyForaGrant.html.

Grant applications will be reviewed by members of ASF’s Science Advisory Board (SAB) and other highly qualified reviewers. Current SAB members include Dr. Joseph Buxbaum (Mt. Sinai School of Medicine); Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School); Dr. Sharon Humiston (University of Rochester); Dr. Bryan King (University of Washington, Seattle); Dr. Ami Klin (Emory University); Dr. Harold Koplewicz (The Child Mind Institute); Dr. Eric London (New York Institute for Basic Research); Dr. Catherine Lord (New York Center for Autism and the Developing Brain); Dr. David Mandell (University of Pennsylvania/CHOP); Dr. Kevin Pelphrey (Yale Child Study Center) and Dr. Matthew State (Yale Medical School).

To learn more about the ASF’s grant programs, and to read about projects funded through this mechanism in prior years, visit www.autismsciencefoundation.org


By Matt Carey

Mark Geier’s license suspended in Florida, revoked in Indiana

22 Aug

Dr. Mark Geier is well known within the alternative-medicine and vaccine-causation segments of the autism communities. As a practitioner, Dr. Geier is probably best known for therapies purporting to treat autism through approaches claiming to work on removing mercury. The idea that mercury is involved in autism etiology is a failed hypothesis on it’s own. But Dr. Geier’s treatment ideas included a frankly incredible notion that mercury is bound in the body by testosterone, so, he hypothesized, by reducing the body’s production of this hormone, one could better remove the mercury. To reduce testosterone, Dr. Geier proposed (and prescribed) drugs such as Lupron. It is not a bad idea–it is a series of bad idea. Very bad ideas.

These ideas are so poor in concept that it is difficult to get insurance companies to pay for Lupron for reducing mercury in the body. In an apparent move to avoid this difficulty, Dr. Geier diagnosed autistic children with precocious puberty. Dr. Geier’s methods were lacking and due to this and other factors, Dr. Geier’s license came under suspension in his home state of Maryland.

Dr. Geier was licensed in many states. When a doctor faces disciplinary action in his home state, he is supposed to report those actions to other states where he holds a license. As Catherina reports in Bad month for the Geiers: Mark R. Geier’s medical license suspended in Florida, Dr. Geier appears to have failed to inform Florida in a timely manner. The full decision is linked on the Just the Vax site, and also can be found here.

Todd W. of Harpocrates Speaks further notes that Dr. Geier’s license had been revoked–not suspended, revoked–in Indiana. In Mark “Castrate ‘Em” Geier’s License Suspended – Part 7 Todd W. notes:

Indiana also made a further step, going beyond mere suspension to actually revoking his license in that state. The revocation comes because he failed to appear before the board regarding his suspension, thereby defaulting on any appeal to their decision. The final order, dated July 5, 2012 further imposed a $5 fee and a fine of $3,000.

Further reading about the “Lupron Protocol” can be found at Neurodiversity.com, where Kathleen Seidel’s thorough reporting was the first to expose many of the questionable practices.

If I understand correctly, Dr. Geier remains licensed in both Illinois, Missouri and Hawai’i. However, he faces more charges in his home state of Maryland.

Missouri notes the fact that Dr. Geier has faced license suspension in other states. His license is up for renewal there Jan 31, 2013. In Illinois, his license is active, with a notation that he has not been “ever disciplined”. His license comes up for renewal there July 30, 2014. His Hawai’i license is “current, valid and in good standing” and valid through 01/31/2014.


by Matt Carey

(note, the last paragraph was added shortly after this article was published)

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

21 Aug

The concepts of neurodiversity are not complex and yet are often misunderstood and misrepresented. Respect is not a difficult concept. The need for research to respect those who are the focus is not difficult.  Respect includes aknowleging that disability does not disenfranchise a person from her human rights. Respect means including the views and opinions of those involved in the research, even if they are intellectually disabled.

Consider this recent study:

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

For emphasis: ” . Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity.”

Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.

One of the misconceptions I’ve read is that neurodiversity is a topic for so-called “high functioning” autistics. Many comments have come through this site calling my child “high functioning” because of the views expressed here. (Those commenters assumed incorrectly).  Here’a something to consider: the study noted above not only focuses on people with intellectual disability, it makes no mention of autism in the abstract.   The study did not even come through in my daily email of pubmed autism abstracts.

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.

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