Archive | August, 2012

Children with neurologic disorders at high risk of death from flu

29 Aug

Sometimes I get taken to task for spending too much time discussing vaccines. The thimersal and MMR hypotheses failed. Why keep discussing vaccines on what is primarily an autism focus site?

Well, for one thing, public health does involve us all. Just in general.
But there really is another level. Many autistics are more medically fragile than the average.

People die from influenza. Even in the relatively clean United States with its modern health care. People die. Amongst those are a disproportionate number of children with neurological disorders.

Below is a CDC press release on deaths from flu. Here for emphasis:

Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1.

People and groups that spread misinformation about vaccines put everyone at risk and people with neurological conditions even more so.

They put my kid at risk. As is often discussed, some people don’t get immunity from vaccines. The only way I’ll know if my kid isn’t protected will be when an outbreak occurs.

I love the nurses in our local pediatric ward. But they dont want to see us again and I don’t want to see them again unless it is at a local Starbucks (in which case I pick up their tab. )

Children with neurologic disorders at high risk of death from flu
Health care and advocacy groups join to protect children most vulnerable to influenza

A disproportionately high number of children with neurologic disorders died from influenza-related complications during the 2009 H1N1 pandemic, according to a study by scientists with the Centers for Disease Control and Prevention. The report in the journal Pediatrics underscores the importance of influenza vaccination to protect children with neurologic disorders. CDC is joining with the American Academy of Pediatrics, Families Fighting Flu and Family Voices to spread the message about the importance of influenza vaccination and treatment in these children.

The Pediatrics study looked at influenza-related deaths in children during the 2009 H1N1 pandemic based on data submitted to CDC from state and local health departments. The number of pediatric deaths associated with 2009 H1N1 virus infection reported to CDC during the pandemic was more than five times the median number of pediatric deaths that were reported in the five flu seasons prior to the pandemic. Sixty-eight percent of those deaths occurred in children with underlying medical conditions that increase the risk of serious flu complications.

Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1.

“We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Dr. Lyn Finelli, chief of the surveillance and outbreak response team in CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.”

“Flu is particularly dangerous for people who may have trouble with muscle function, lung function or difficulty coughing, swallowing or clearing fluids from their airways,” said study coauthor and pediatrician Dr. Georgina Peacock. “These problems are sometimes experienced by children with neurologic disorders,” said Peacock, of CDC’s National Center on Birth Defects and Developmental Disabilities.

The most commonly reported complications for children with neurologic disorders in this study were influenza-associated pneumonia and acute respiratory distress syndrome (ARDS). Seventy-five percent of children with a neurologic condition who died from 2009 H1N1 influenza-related infection also had an additional high risk condition that increased their risk for influenza complications, such as a pulmonary disorder, metabolic disorder, heart disease or a chromosomal abnormality.

CDC is partnering with the American Academy of Pediatrics and influenza advocacy groups to help promote awareness about the importance of influenza prevention and treatment in these high risk children. Since the H1N1 pandemic, children with neurologic conditions continue to represent a disproportionate number of influenza-associated pediatric deaths. CDC, the American Academy of Pediatrics (AAP), Family Voices, and Families Fighting Flu recognize the need to communicate with care takers about the potential for severe outcomes in these children if they are infected with flu.

“Partnering with the American Academy of Pediatrics, influenza advocacy groups and family led-organizations CAN help prevent influenza in children at highest risk,” said CDC Director Dr. Thomas R. Frieden.

The partnering organizations are working to coordinate communication activities with their constituents, which include parents and caregivers, primary care clinicians, developmental pediatricians and neurologists in hopes to increase awareness about flu prevention and treatment in children with neurologic disorders.

“The American Academy of Pediatrics, Families Fighting Flu and Family Voices were all natural partners when we thought about how to reach as many key people as possible with this message,” Dr. Peacock adds. “The collaboration and energy around this effort has been fabulous.”

“Our network of physicians is committed to influenza prevention in all children, and especially in reducing complications in those children at higher risk for experiencing severe outcomes as a result of influenza-like illness,” says Robert W. Block, M.D., president of the AAP. “This coalition can more broadly engage the entire community of child caregivers to express how serious flu can be for these children. These efforts emphasize why the medical home is so important for children and youth with special health care needs.”

Family Voices is a national family-led organization supporting families and their children with special health care needs. Ruth Walden, a parent of a child with special needs and president of the Family Voices Board of Directors, says, “It’s frightening to think that flu can potentially lead to so many complications or even death. We’re pleased to see organizations working together to educate families and providers about the importance of prevention.”

Families Fighting Flu, an advocacy group dedicated to preventing influenza, has a long history of reaching out to families who’ve lost loved ones to flu. “Throughout the years we’ve seen firsthand how flu can affect these kids and their families’ lives. We understand that prevention is absolutely critical,” explains Laura Scott, executive director of Families Fighting Flu. “Working with other groups only expands our mission of keeping kids safe throughout the flu season.”

CDC recommends that everyone aged 6 months and older get an annual influenza vaccination, including people who are at high risk of developing serious complications. Flu vaccine is the best prevention method available. Antiviral drugs, which can treat flu illness, are a second line of defense against flu.

To learn more about influenza, visit http://www.cdc.gov/flu.

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By Matt Carey

A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders

28 Aug

Autism is more than something which concerns children. Autistics, like everyone, grow up. Some will find jobs, some could use supports to obtain jobs. At present, most do not gain employment. How can we as a society better support autistics in gaining employment? Well, that question is largely unanswerable. A paper out yesterday in Pediatrics A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders (full text is free), shows that there is little data on vocational services for adults.

The abstract is below, and the paper online, but a quick view of the study can be found in this Reuters article, quoting lead author Julie Lounds Taylor and Paul Shattuck, an autism researcher not involved with the study:

“Even though there are vocational services out there, they haven’t been rigorously studied,” Taylor said.

She stressed, though, that the findings do not mean the programs don’t work – just that better studies are needed.

An autism researcher not involved in the new report agreed.

“I think this is more a critique of the research community, not the programs themselves,” said Paul Shattuck, an assistant professor at Washington University in St. Louis.

Why have there been so few studies, and no high-quality ones?

Both Taylor and Shattuck said that in autism, the research focus has historically been on children.

“But children with autism grow up,” Taylor pointed out. “We have startlingly little evidence on how to help adults.”

Prof. Shattuck was, in my opinion, being polite. Autism parents such as myself will have a hard time finding someone to blame for this. We have dominated the discussion and advocacy efforts for some time and we have not called for better research on such critical areas as the effectiveness of adult supports.

BACKGROUND AND OBJECTIVE: Many individuals with autism spectrum disorders (ASDs) are approaching adolescence and young adulthood; interventions to assist these individuals with vocational skills are not well understood. This study systematically reviewed evidence regarding vocational interventions for individuals with ASD between the ages of 13 and 30 years.

METHODS: The Medline, PsycINFO, and ERIC databases (1980–December 2011) and reference lists of included articles were searched. Two reviewers independently assessed each study against predetermined inclusion/exclusion criteria. Two reviewers independently extracted data regarding participant and intervention characteristics, assessment techniques, and outcomes, and assigned overall quality and strength of evidence ratings based on predetermined criteria.

RESULTS: Five studies were identified; all were of poor quality and all focused on on-the-job supports as the employment/vocational intervention. Short-term studies reported that supported employment was associated with improvements in quality of life (1 study), ASD symptoms (1 study), and cognitive functioning (1 study). Three studies reported that interventions increased rates of employment for young adults with ASD.

CONCLUSIONS: Few studies have been conducted to assess vocational interventions for adolescents and young adults with ASD. As such, there is very little evidence available for specific vocational treatment approaches as individuals transition to adulthood. All studies of vocational approaches were of poor quality, which may reflect the recent emergence of this area of research. Individual studies suggest that vocational programs may increase employment success for some; however, our ability to understand the overall benefit of supported employment programs is limited given the existing research.

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By Matt Carey

Autism Spectrum Disorders in the Stockholm Youth Cohort: Design, Prevalence and Validity

28 Aug

A recent study from Sweden presents another autism prevalence estimate. Autism Spectrum Disorders in the Stockholm Youth Cohort: Design, Prevalence and Validity is available online free. My analysis is on the Autism Science Foundation blog as Autism Spectrum Disorders in the Stockholm Youth Cohort: Design, Prevalence and Validity

I will point out that the methodology differs from the American prevalence estimates from the CDC. In particular, where the CDC looks at children of a given age (8 years old) in a given year, the Stockholm Youth Cohort study considers a cross section of autistics, ages 4 to 23. The prevalence, especially for autistic disorder, is relatively flat for autistics born in the 1990s, a time when there was supposedly an increase of 100’s of percent in autism prevalence. In other words, the study doesn’t support the idea of an epidemic.

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By Matt Carey

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.

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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

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By Matt Carey

From KQED: In Defense of Science: An Interview with NCSE’s Eugenie Scott

24 Aug

KQED is a public radio (and TV) station in the San Francisco bay area. One show on KQED that covers science is QUEST. A few weeks ago, QUEST had an article on their blog: Doubt and Denialism: Vaccine Myths Persist in the Face of Science. As you can imagine, it gathered exactly the sort of attention it was discussing: comments showing vaccine myths persisting in the face of science. There are nearly 220 comments. Quest has followed up with another good article on science and how it is often ignored: In Defense of Science: An Interview with NCSE’s Eugenie Scott. Eugenie Scott pulls a lot of examples from the evolution discussions to illustrate how science is often ignored or misused.

Note: I misspelled KQED when I first published this.

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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.

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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.

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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.

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By Matt Carey

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