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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

Autism Speaks accused of disability discrimination

20 Jul

Michelle Diamond of Disability Scoop has this story: Autism Speaks accused of disability discrimination. The basic story appears to be this:

A single mother, unemployed, applied for a job as a walk director for Autism Speaks. After going through a long interview process she was offered the job. The day before starting she informed Autism Speaks that she needed some accommodation one day a week because of her autistic child– such as a shifted work day or day without pay. Autism Speaks, it is alleged, refused to make an accommodation, so the mother sought and found child care for the day. However, Autism Speaks rescinded the job offer anyway according to the complaint.

Per Disability Scoop:

In her suit, Greggs is seeking compensatory and punitive damages. Nonetheless, she said the legal action is not about money but principle for her. Once a supporter of Autism Speaks, Greggs said she is outraged.

“They say one thing and they do another,” the Upper Marlboro, Md. mom said of the nonprofit. “You can’t say that you’re for helping families with children with autism and then you can’t give me an accommodation.”

When I first heard of this I thought of a previous discussion about Autism Speaks where I noted that at one level it isn’t about who works in every job at Autism Speaks, it’s about getting the job done. That may be a good idea in theory, but examples such as this one, if true, would speak to the need to have members of the community (autistics and parents) throughput the organization.

Disability Scoop has a short quote (one can’t expect a detailed response with pending litigation) from Autism Speaks:

“Autism Speaks is committed to employing parents and other family members of people with autism, as well as individuals on the spectrum,” the organization said.

Again, the full story at Disability Scoop.

By Matt Carey

35 Nobel Laureates are all in the pocket of Big Pharma?

27 Jun

Yes. A group of 35 Nobel Laureates has been accused of working with the “vaccine industry”. Those familiar with the online discussions of autism and vaccines will likely be unsurprised that this claim comes from the Age of Autism blog. Given the odd nature of this claim, most will likely be unsruprised that this will take some lenghthy introduction.

The article at the Age of Autism is Write the President of Cameroon to Defend Dr. Luc Montagnier, which opens so many questions. Why do they want to defend Luc Montagnier? Why would one write the president of Cameroon to do so?

Luc Montagnier received the Nobel Prize in medicine in 2008. His research has since moved into some rather questionable territory. For example, he claims that DNA from bacteria can, in highly diluted samples, induce low frequency electromagnetic radiation. This brings us to his connection to the autism communities. He claims that he can detect the electromagnetic radiation from the blood of autistic children, but not from non-autistic children. He claims that this radiation is a sign of pathogentic bacteria, and, further, claims that based on this one might treat autism with long term antibiotic therapy.

Here is part of his summary from when he presented these ideas at AutismOne this year:

There is in the blood of most autistic children — but not in healthy children — DNA sequences that emit, in certain conditions, electromagnetic waves. The analysis by molecular biology techniques allows us to identify these electromagnetic waves as coming from already known bacterial species. This correlation, which is based on more than one hundred children of European origin, naturally does not prove a causal relationship. However, a therapy first started by a group of independent clinicians and now performed in conjunction with laboratory observations reinforces the idea that systemic bacterial infections play a role in the genesis of symptoms of autism.



These are, to put it politely, extraordinary claims. They are without the extraordinary evidence which would support them.

Those with experience following the autism/vaccine discussion will not be surprised that even with these odd claims, the alternative-medical community has embraced Luc Montagnier eagerly. He has a Nobel Prize, after all. And these groups have shown a strong desire to establish some credibility. Most of their proponents are non-medical specialists (think Kerri Rivera whose presentation at AutismOne promoted using a bleach as an oral and enema-based “therapy”) and their medical specialists include people whose reputations are less than stellar (for example, Andrew Wakefield and Mark Geier).

Luc Montagnier ties his theory into the permeable-gut theory of autism.

Our working hypothesis is that immune dysfunction associated with inflammation of the intestinal mucosa leads to the introduction of bacterial components, including neurotoxins,
into the bloodstream, creating oxidative stress as well as microvascularities, especially affecting meningeal vessels and finally specific neuronal damage.




And questions whether risks are worth the benefit for vaccines in the modern world
:

My position on vaccines has not changed over the last 30 years: the principle has proved to be excellent in the past. Smallpox has been eradicated in the world thanks to the use of vaccination, with attenuated vaccinia virus. But some had to pay a horrific price: encephalitis in a certain number of children. Over the years, vaccinations against bacteria and viruses have multiplied, appearing as the most cost-effective way to prevent epidemics. However, side effects are becoming more important and a single death cannot be tolerated any longer. Many parents have observed a temporal association – which does not mean causation – between a vaccination by puncture and the appearance of autism symptoms. This should not be neglected by the medical community and public health decision makers. It is therefore of prime importance to study the risk factors, both environmental and genetic, which could be involved in order to prevent them. Presumably, vaccination, especially vaccination against multiple antigens, could be a trigger of a pre-existing pathological situation in some children. The vaccine denialists are not the courageous individuals who raise the problems of vaccination accidents, but are those people who deny the existence of these tragic accidents. The latter believe in the dogma “vaccines are good”, period. They are forgetting the Hippocratic oath: primum, non nocere. First, do no harm.

He has credentials. He claims to have a potential cause and potential treatment for autism. He supports the gut-brain theory and is openly skeptical about the way vaccines are used. Is there any surprise that the vaccines-cause-autism/alternative-medicine groups support him?

A news article on the Nature website discusses some recent controversy involving Luc Montagnier. In Nobel fight over African HIV centre Declan Butler writes

A fledgling AIDS research centre in Cameroon, already struggling to find a scientific leader, is now facing insurrection from an unlikely quarter: a group of 35 Nobel prizewinners.

The laureates are calling for the centre’s interim scientific director, fellow prizewinner Luc Montagnier, to be removed from the part-time post. Observers say that unless the leadership crisis is resolved quickly and decisively, it could harm the prospects of the Chantal Biya Inter­national Reference Centre (CIRCB) in Yaoundé.

Yes, 35 Nobel Laureates have signed a letter asking an AIDS center in Cameroon to reconsider hiring Luc Montagier in a part time post.

The laureates argue that his embrace of theories that are far from the scientific mainstream, as well as what they claim are anti-vaccination views, risk hurting the CIRCB’s research, health-care programme and reputation. Montagnier has suggested, for example, that water can retain a ‘memory’ of pathogens that are no longer present1; that the DNA sequences of pathogens emit electromagnetic waves that could be used to diagnose disease2, 3; and that stimulating the immune system with antioxidants and nutritional supplements may help people to fight off AIDS4.

1) Montagnier, L., Aïssa, J., Ferris, S., Montagnier, J.-L. & Lavalléee, C. Interdisciplin. Sci. 1, 81–90 (2009).

2) Montagnier, L. et al. Preprint at http://arxiv.org/abs/1012.5166 (2010).

3) Montagnier, L. et al. Interdisciplin. Sci. 1, 245–253 (2009).

4) Butler, D. Nature 468, 743 (2010).

One could argue that it is this last point which is the most important, and the likely strongest motivation for the group of Laureates to write their letter. From reference 4:

Since then, Montagnier has supported non-mainstream theories in AIDS research that have put him at odds with other scientists. Most recently, he has argued that strengthening the immune system with antioxidants and nutritional supplements needs to be considered along with antiretroviral drugs in fighting AIDS, in particular in Africa.

“Montagnier’s embrace of pseudoscientific and fringe agendas over the past few years has been seized on by AIDS denialists and other fringe groups, who make the case that Montagnier now supports their crazy views,” says John Moore, an AIDS virologist at Cornell University in New York. Montagnier says that AIDS denialist groups misrepresent his thinking.

My suspicion is that the group of 35 Nobel Laureates are very concerned that an AIDS treatment center in Africa might take a path towards non-scientifically based treatments.

The Nature news article does mention Luc Montagnier’s connection to the autism communities:

The last straw for Montagnier’s critics seems to have been his appearance in May alongside vaccine sceptics at a conference in Chicago, Illinois, organized by US patient-advocacy groups AutismOne and Generation Rescue. Montagnier’s talk, on his hypothesis that bacterial infections may be one of many causes of autism spectrum disorder, states: “There is in the blood of most autistic children — but not in healthy children — DNA sequences that emit, in certain conditions, electromagnetic waves.”

The same groups who greeted a single Nobel Laureate with such vigor have now 35 other Nobel Laureates who consider this move by Luc Montagnier to be “the last straw” in his actions. That is a rather stunning rebuke.

And, as already alluded to above, a rebuke which has not gone unanswered. The Age of Autism blog is calling for support for Luc Montagnier. Their article, Write the President of Cameroon to Defend Dr. Luc Montagnier, begins:

A recent article in Nature shows that the vaccine industry has been closing ranks against Dr. Luc Montagnier ever since his brilliant lecture at AutismOne last month. In particular, 35 Nobel Laureates, led by one who sells commercial products to the vaccine industry, sent a letter to the President of Cameroon protesting Dr. Montagnier’s leadership position on a national research organization dedicated to HIV research.

Immediately we read that it is the “vaccine industry” closing ranks against Luc Montagnier, and the Nobel Laureates are led by one with a link (however tenuous) to the vaccine industry.

What is more stunning in this article is the fact that they never address the simple question of whether it would be good for the AIDS community in Cameroon to have Luc Montagnier on board at the Center. The letter is entirely focused on arguments that vaccines cause autism.

In conclusion, the evidence to date shows that Dr. Luc Montagnier’s serious consideration to the vaccine-autism connection is as correct as his original discovery of the Human Immunodeficiency Virus. Please do not cave to the coercive and corrupt powers of the vaccine industry, which includes an old rival who previously tried to take credit for Dr. Montagnier’s Nobel Prize-Winning discovery of HIV. We believe that through his work on autism, Dr. Montagnier has further demonstrated a level of scientific rigor and innovation of unparalleled accomplishment that could hold significant promise for patients suffering from AIDS, as it does for patients with autism.

What the autism/vaccine discussion has to do with Cameroon’s decision whether to keep Luc Montagnier on board for an AIDS center is not a part of the letter. This letter has frankly nothing to do with Cameroon’s decision whether to keep Luc Montagnier on board at an AIDS center. It is just a rundown of the rather weak arguments behind the vaccine-autism proposed link, with a liberal dose of “coercive and corrupt” powers language. This may come as a bit of a harsh surprise to the author of the letter, but, this letter will only serve to help convince the President of Cameroon to let Luc Montagnier go.

It is likely that the president of Cameroon will not do much fact checking, but should he chose to, here’s one section that takes no interpretation:

The latest CDC Autism and Developmental Disabilities Monitoring Network report from one US state found a 20% decrease in autism spectrum disorder prevalence in children born in 2000, the first year after a joint statement was made in the United States by the American Academy of Pediatrics and the US Public Health Service calling for thimerosal to be removed as soon as possible. This is the first statistically significant decrease in autism reported in this surveillance system’s decade long-history.

The prevalence estimate went from 1 in 110 to 1 in 88. That’s an increase.

Here is Luc Montagnier’s own response to the letter submitted by the 35 Nobel Laureates: Luc Pr Luc Montagnier HIV – AUTISM – VACCINES: FACTS and HOPES

What will Autism Speaks look like now?

20 Jun

Autism Speaks has a new president: Liz Feld. She was previously the Executive Vice President for Strategic Communications. The replaces Mark Roithmayr, the first full time president of Autism Speaks. Mr. Roithmayr resigned suddenly.

Ms. Feld has a great deal of experience in areas of communication and politics. But she appears to be an outsider to the autism communities.

While it is unclear why Mr. Roithmayr left, he was clearly a proponent of the concept of the autism epidemic. Also, under his tenure autism speaks has promoted a negative image of autistics which has drawn a great deal of criticism. The video “I am Autism” being a prime example. Autism Speaks has chosen a very nuanced approach to the question of vaccine causation.

As a relative newcomer to Autism Speaks and an apparent outsider to the autism communities, will Ms. Feld change direction for Autism Speaks? Autism Speaks seems more careful about the negative messages than in the past (one video has apparently been removed from the Autism Speaks website and YouTube channel for example).

The press release is quoted below.

NEW YORK, NY (June 19, 2012) — Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Liz Feld, a respected executive with a strong track record of accomplishment in both the public and private sectors, has been named the organization’s new president. The appointment, which is effective immediately, was announced by Autism Speaks Co-founders Bob and Suzanne Wright. Mark Roithmayr has resigned as president after serving in the position since 2005.

Liz Feld
“Liz’s history of strong, results-oriented leadership, together with her clear vision for the future of Autism Speaks, makes her the ideal person to move us forward in our work to improve life for people with autism and their families,” said Bob Wright. “Autism Speaks is poised to accomplish even greater things in our advocacy work, in the scientific research we fund and in services and resources we provide to families. Liz will ensure that we realize our goals and meet our responsibility to those we serve.”

“We are so grateful to Mark for having guided Autism Speaks over the last seven years,” said the Wrights. “His passionate leadership and tireless efforts helped us grow from an emerging charity to the leading autism science and advocacy organization in the world. Mark always displayed an undying commitment to our army of volunteers and the autism community around the globe. We thank him for his tenacity and his dedication to our families.”

Commenting on the appointment of Feld, who joined Autism Speaks in 2012 as executive vice president of strategic communications, Suzanne Wright stated, “I am thrilled that Liz has agreed to step into the role of president of Autism Speaks, and excited by the prospect of what we can accomplish working together under her leadership. Liz believes passionately in our mission and our community. Her proven ability to build consensus and get things done will be a tremendous asset to Autism Speaks and our cause.”

Before joining Autism Speaks, Feld served for four years as the mayor of the Village of Larchmont in Westchester County, NY. She was elected mayor on a fiscal reform platform in 2006, after having served as deputy mayor (2003-2006) and trustee (2002-2006). As mayor, Feld secured more than $4 million in federal, state and local grants to support local programs, and restored the village surplus to $2.3 million, resulting in the village’s first AAA credit rating from Moody’s Investor Services.

Feld has devoted much of her career to public policy and strategic communications. She served in the White House from 1984-1987, as public affairs specialist in the White House Office of Management and Budget and press officer for Vice President George H.W. Bush during the Reagan administration. She was director of news information at ABC News and senior vice president for communications for Nickelodeon. Prior to that, she worked at Robinson, Lake, Lerer & Montgomery, a strategic communications and public affairs firm.

In September 1999, Feld helped launch the Million Mom March, a national grass-roots organization established to promote sensible gun safety legislation. She is a member of Mayors Against Illegal Guns, co-founded by New York Mayor Michael Bloomberg and Boston Mayor Thomas Menino. Feld also serves as a board member of New Yorkers for Growth, a leading New York State fiscal reform group.

Feld holds a B.A. in Government and Political Theory from Georgetown University.

Any hope for a change is tempered by this section of the press release where we are again given the epidemic concept.

About Autism
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 88 children in the U.S. is on the autism spectrum – a 1000 percent increase in the past 40 years that is only partly explained by improved diagnosis.

Will there be change? It doesn’t make sense for Autism Speaks to change leadership, especially so suddenly, if not for some change in direction.

What that potential change may be we will have to wait to see. The press release gives little insight into such details.

Autism Speaks names new president

20 Jun

Autism Speaks has chosen a new president. Mark Roithmayr, the former president, has resigned.

From their press release:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Liz Feld, a respected executive with a strong track record of accomplishment in both the public and private sectors, has been named the organization’s new president. The appointment, which is effective immediately, was announced by Autism Speaks Co-founders Bob and Suzanne Wright. Mark Roithmayr has resigned as president after serving in the position since 2005.

Ms. Feld is fairly new to Autism Speaks, having only joined this year. She was Vice President of Strategic Communications. For those curious as to what a vice president of Executive Communications does, the old Autism Speaks webpage for their leadership listed her as:

Liz Feld – Executive Vice President of Strategic Communications

with these two people listed under her:

Dana Marnane – Vice President — Awareness and Events
Bill Shea – National Director of Creative Services

What direction she will take Autism Speaks in is not immediately clear.

Ms. Feld was previously in the political sphere, having served as Mayor of Larchmont (in New York State) and having tried a run for the New York state senate.

Mr. Roithmayr wrote in response to the new CDC autism numbers Autism Is a National Epidemic That Needs a National Plan.

No clear news on why Bob Roithmayr is leaving. Or whether this is as sudden as it seems from the outside.

Thank Mitsubishi for supporting an Autism Campus Inclusion Leadership Program

19 Jun

In February I posted an email from the Autistic Self Advocacy Network describing their program for this summer:

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

That program was supported by the Mitsubishi Electric America Foundation (MEAF). If you feel grateful for their support of this program, you can contact some of the executives of the Foundation.

Katsuya Takamiya, President and CEO:
http://tinyurl.com/786gdcg

Kevin R. Webb, Director, MEAF:

Mitsubishi Electric Public Relations:

I can’t take credit for finding those links. That credit goes to the “Canary Party”. Never heard of them? Well, they are an offshoot of groups like SafeMinds and others. The sort who are behind the blog, Age of Autism.

No, they didn’t collect those links in order to thank the Foundation for their efforts. They wanted their membership to complain. They have a webpage (Mitsubishi Funds Group that Opposes Preventing or Curing Autism). Their discussion is rather long, but the main points are copied below. (The original has formatting problems which they don’t seem to want to fix.)

Despite the many worthwhile autism charities desperately in need of funding, Mitsubishi Electric America Foundation (MEAF) has chosen to fund one that:
1) opposes all efforts to cure or prevent autism, denies an increase in autism prevalence and now seeks to promote this form of “activism” among college students nationwide.
2) blatantly violates MEAF’s own stated guideline: “We do not fund organizations or programs connected with a controversial social or political issue.” MEAF is funding a “neurodiversity” initiative by ASAN (Autism Self Advocacy Network) – highy controversial in the autism community. According to ASAN, “The training is meant to prepare students to engage in self-advocacy and pro-neurodiversity activism on their college campuses.”
3) promotes “self-diagnosis” of autism, causing students who may have the disorder to not qualify for college disability support services and national testing service accommodations, thus diminishing, not “enhancing” chances for academic success and future employment. “Self-diagnosis” (without medical confirmation) of any disability, disease or disorder is an irresponsible practice and should not receive corporate funding.
4) does not promote “full inclusion of people with disabilities alongside their peers without disabilities,” as called for in Mitsubishi guidelines, but promotes segregation of people with disabilities in extracurricular activities.

Yes, the “canary party”, a group devoted to promoting the failed “mercury in vaccines caused an autism epidemic” idea is claiming that ASAN is “highly controversial”. A group spreading fear of vaccines is pointing fingers claiming someone else is “irresponsible”.

Take the time. Click on the links. Let the good people at Mitsubishi know that people appreciate their support.

Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it”

14 Jun

Jenny McCarthy is the head of Generation Rescue, a charity which promotes the idea that there is an epidemic of autism caused by vaccines. Ms. McCarthy has been the keynote speaker at the AutismOne conference (which is now co-hosted by Generation Rescue) every year for the past five years.

At this year’s AutismOne keynote, she spoke about the difference between the parents who use alternative medicine on their children (“Warrior Moms”) and those who don’t (“Victim Moms”). Here is the video. At about seven minutes in she talks about the moms who “fall into this victim role, and they like it”

“They didn’t get attention in their lives and then this incredible door opens…and they’re loving it”

This isn’t a new message for her. In her first book (Louder than Words) she’s had a similar message. From Louder than Words:

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.

The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.

And, later…

“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.

For this observer, this is some combination of sales-pitch/motivational-speaker. Ironically, Ms. McCarthy’s followers like to portray themselves as non-judgmental.

An Autism Dad takes on this “victim” vs. “warrior” stance Jenny McCarthy creates in A Note to Jenny McCarthy

Jenny McCarthy has been back in the news lately. Partly because she’s going to do another photo shoot for Playboy. The reason? To make money to help pay for her son’s school. I’ve seen reports that she told people at AutismOne that the tuition is $3,000/month, and Howard Stern that it is over $100,000 per year.

I wish that kid all the best. I wish him well. I also wish that perhaps when people throw out terms like “recovered” and “no longer autistic” to promote the vaccine-hypothesis and alternative therapies, that those people would give more details about how far “recovered” is from “cured”.

Here’s how she characterized her son’s recovery on the Larry King Live show

MCCARTHY: A lot of these kids have Candida, which is yeast — overgrowth of yeast. By giving them anti-fungals, like Diflucan. After I cleaned out Evan’s Candida — and I’m going to say this very clearly — he became typical. He started speaking completely. His social development was back on. He’s now in a typical school. He got that much better. And my story is not alone. I have — recoveryvideos.com, by the way, has pictures and stories.

In 2007, her son “became typical” and now he needs a $100,000+/year special school? I wish him well. I also wish that there was more transparency and accurate information from his mother.

Perhaps she could drop the victim mom/warrior mom schtick and give us honest mom.

Save the Date: July 10, 2012 – Meeting of the IACC

13 Jun

The first meeting of the Interagency Autism Coordinating Committee (IACC) will meet on July 10, 2012. Roughly one month from today. An announcement from the Office of Autism Research Coordination (OARC) is below.

Please save the date Tuesday, July 10, 2012 for the first meeting of the Interagency Autism Coordinating Committee (IACC) under the Combating Autism Reauthorization Act. OARC will post additional meeting details to the IACC website, http://iacc.hhs.gov/events/, as they become available in June and early July.

Members of the community may also be interested in the following updates:

· This year’s International Meeting for Autism Research (IMFAR) in took place in Toronto, Canada from May 16-19, 2012. Many members of the public and advocacy community participated, including several IACC members. OARC Acting Director, Dr. Susan Daniels, gave a presentation on behalf of the OARC/IACC and NIH at the meeting and the slides are posted on the IACC website at: http://iacc.hhs.gov/non-iacc-events/2012/slides_imfar_susan_daniels_051712.pdf. The presentation includes an update on the IACC, a preview of the data from OARC/IACC publications that will be released this summer, an update on the NIH Autism Centers of Excellence, and a challenge to the research community to embrace data sharing to advance autism research. The video clip from the presentation will be posted on the Non-IACC Meetings and Events web page as soon as it is available.

· On May 21, 2012, IACC Chairman, Dr. Thomas Insel published a blog highlighting the critical need for increased data sharing across scientific fields, including ASD research: “Time Matters – Why We Care So Much About Data Sharing.”

· On May 24, 2012, NIH, CDC and HRSA issued a news update about a newly published report based on data from the Survey of Pathways to Diagnosis and Services: http://www.nimh.nih.gov/science-news/2012/most-children-with-asd-diagnosed-after-age-5-use-multiple-services-and-medications.shtml.

· The American Psychiatric Association is accepting public comment until June 15, 2012 on proposed changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) . For more information, please see the APA website at: http://www.dsm5.org/Pages/Default.aspx.

We hope everyone has a safe and enjoyable holiday weekend.

Sincerely,

The Office of Autism Research Coordination

Note: I am one of the public members slated to be a part of the IACC.

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

25 May

A study just out from US National Institute of Mental Health researchers analyzes a survey they performed. Even today half of sad children identified are not diagnosed until after age 5. Half of autistic school age kids are using some form of psychotropic medicine.

The study is discussed here:

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

And that discussion is quoted below:

Fewer than one out of five school-aged children with special health care needs were diagnosed with autism spectrum disorder (ASD) by age 2, according to new data from an NIMH-funded study. These diagnoses were made by a variety of health care providers, and most children in the study used multiple health care services (such as speech or language therapy) and multiple medications.

Background

Identifying ASD at an early age allows children to start treatment sooner, which can improve their later development and learning, and may also reduce a child’s need for specialized services or treatments later in life.

To determine the experiences of school-aged children with special health care needs, Lisa Colpe, Ph.D., M.P.H., and Bev Pringle, Ph.D., of the NIMH Division of Services and Intervention Research, collaborated with colleagues who conducted more than 4,000 telephone interviews with parents or guardians of a child between the ages of 6-17 who had a confirmed diagnosis of ASD, intellectual disability, and/or developmental delay.

These survey interviews were a part of the Pathways to Diagnosis and Services Study, sponsored by NIMH using funds available from the American Recovery and Reinvestment Act of 2009 (Recovery Act). Additional collaborators on this project include the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC) and the Maternal and Child Health Bureau at the Health Resources and Services Administration (HRSA).

Results of the Study

Key findings include:
The median age when school aged children with special health care needs and ASD were first identified as having ASD was 5 years.
Those identified as having ASD at younger than 5 years were diagnosed most often by generalists (such as pediatricians, family physicians, and nurse practitioners) and psychologists. Those identified later than 5 years were diagnosed primarily by psychologists and psychiatrists.

Nine out of ten school-aged children with special health care needs and ASD used at least one health care service, such as behavioral intervention or modification services, sensory integration therapy, cognitive based therapy, occupational therapy, physical therapy, social skills training, or speech or language therapy.

Social skills training and speech or language therapy were the most commonly used service, each used by almost 60 percent, or three out of five, of these children.

More than half of school-aged children with special health care needs and ASD used at least one psychotropic medication. “Psychotropic medication” refers to any medication used to treat a mental disorder.
Almost 33 percent of these children used stimulant medications
25 percent used anti-anxiety or mood-stabilizing medications
20 percent used antidepressants.

Further findings are available in the NCHS Data Brief and Frequently Asked Questions.

Significance
The new data detail the experiences of young children with ASD, describing when they are first identified as having ASD, who is making those identifications, and the services and medications the children use to meet their developmental needs.

What’s Next
NIMH encourages researchers to access and analyze the new dataset to produce more studies on the early life experiences and the diagnostic, service, and treatment issues relevant to children with ASD and special health care needs. The Pathways to Diagnosis and Services Study dataset can be accessed at http://www.cdc.gov/nchs/slaits/spds.htm.

Reference
Pringle BA, Colpe LJ, Blumberg SJ, Avila RM, Kogan MD. Diagnostic History and Treatment of School-Aged Children with Autism Spectrum Disorder and Special Health Care Needs. NCHS data brief, no 97. Hyattsville, MD: National Center for Health Statistics. 2012.

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://autisticadvocacy.org/