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Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

For the first time in history!

29 Oct

Here’s one of those statements that seem dramatic until one puts it into historical context:

For the first time in history, a biologically plausible mechanism of action has been discovered linking a vaccine to a serious adverse event.

Who wrote that? Someone from a group calling itself “SaneVax”. And repeated by none other than Dan Olmsted, proprietor of the Age of Autism blog. Yes, a man who has for years promoted the (failed) idea that mercury in vaccines caused an epidemic of autism is repeating the claim that ” For the first time in history, a biologically plausible mechanism of action has been discovered linking a vaccine to a serious adverse event.” The same Dan Olmsted who has offered up support for Andrew Wakefield and his failed claims that the MMR vaccine also caused a rise in autism rates.

Begs the question of why Mr. Olmsted has put so much time and effort into ideas like mercury and the MMR if they had no biologically plausible mechanism.

Of course no one believes Mr. Olmsted has changed his mind. It’s fairly clear this is just sloppy writing by “SaneVax” and some quick copy-and-paste work by Mr. Olmsted (sure he cited the source but did he read it?) . It would be amusing if the thimerosal and MMR ideas didn’t cause (and didn’t continue to cause) harm both within the autism communities and the general population.

For the record, this claimed “first biologically plausible mechanism” is from a paper by Prof. Shaw. His paper proposing a link between aluminum in vaccines and autism was very poor. Add this to the lack of relavence to autism andI see little point in putting much time into this new (gardasil) paper.

Also for the record and more historical context:

There were reactions to multi dose vaccines in the pre preservative era. The biologically plausible mechanism there was the growth of bacteria introduced into the vial by the needle.

There were reactions to the early polio vaccine produced by Cutter Laboratories. The biologically plausible mechanism there was the injection of live polio virus instead of the inactivated virus that was supposed to be used.

Similarly, the live virus in the oral polio vaccine  can occasionally cause paralysis. The OPV is no longer used in the U. S. after the efforts of a true vaccine safety advocate.

It probably seems strange but it is these last examples that strike me then most sad. Sure, they forgot their own claims that vaccines cause autism. But these other examples are very real, demonstrated vaccine reactions with clear biological mechanisms. But I am being naive. I am expecting a discussion of facts rather than a public relations and political commentary.

Edit to add: I’m not the first to notice this sloppy writing.

Autism Science Foundation Partnering with UJA-Federation to Launch Three Surveys Designed to Identify Services and Needs for Adults with Autism

11 Oct

As a follow on to the article Survey of Services Needs for Adults with Autism, here is the press release:

 

Date Published:
OCTOBER 11, 2012

The New Surveys — Conducted on behalf of UJA-Federation by the Autism Science Foundation and the Interactive Autism Network — Aim to Help Service Providers Expand Programs That Support AllThose Affected by Autism

(OCTOBER 11, 2012—New York, NY) UJA-Federation of New York announced today the launch of a series of surveys designed to determine which types of services for adults with autism are most needed in the New York metropolitan area. The surveys are being administered by the Autism Science Foundation and the Interactive Autism Network (IAN).

The three surveys target individuals with autism ages 18 to 35; parents of individuals with autism ages 18 to 35 who are independent; and parents of individuals with autism ages 18 to 35 who are under their parents’ guardianship. People fitting one of these three groups are invited to participate by registering at the Interactive Autism Network (IAN) and completing the “UJA-Federation Adult with Autism Spectrum Disorder (ASD) Survey.”

“The goal of this project is to identify the drivers of fulfillment and success for autistic adults in the areas of employment, leisure activities, and spirituality,” said Deborah Hilibrand, a member of UJA-Federation of New York’s Autism Task Force. “We will then use this information to help UJA-Federation and other agencies provide these critical activities by providing financial support for projects that deliver these services.”

“We also want to use the data to enhance public awareness about the critical issues facing adults with autism and their families by broadly disseminating the results of this survey,” said Alison Singer, president of the Autism Science Foundation.

The free survey is designed to be completed entirely online. Surveys must be completed by Friday, November 30, 2012. All responses and data collected will be kept anonymous and confidential. Participants in this survey do not have to be Jewish or receive services from UJA-Federation, and people of all faiths are welcome.

Eligibility to participate in the UJA-Federation Adult with ASD Survey includes:

  • Residency in the five boroughs of New York City, Long Island, or Westchester.
  • An adult with ASD who is independent and is not under anyone’s legal guardianship.
  • The parent of an independent adult with ASD (for example, one’s adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions).
  • The legally authorized representative of a dependent adult with ASD (for example, you may have legal guardianship or medical power of attorney for the adult with ASD).

“This project is especially exciting because the information collected will not only have an immediate effect on improving services for adults with autism, but it will also advance autism research involving adults — a group that is sorely underrepresented,” said Dr. Paul Law, director of the Interactive Autism Network at Kennedy Krieger Institute. “I believe that community service providers like UJA-Federation of New York are key to ensuring greater involvement of adults with autism in research.”

Additional funding for this project was provided by the Hilibrand Foundation and the FAR Fund. The survey can be found by visiting http://orca.kennedykrieger.org/index.php?sid=86954&newtest=Y&lang=en

###

Contact: Roberta Lee, UJA-Federation, 1.212.836.1800, leer@ujafedny.org

 

To begin registration and the survey, click on the link below:

http://orca.kennedykrieger.org/index.php?sid=86954&newtest=Y&lang=en


By Matt Carey

Survey of Services Needs for Adults with Autism

11 Oct

There is a great need for more and more accurate information on the needs of autistic adults. Information will allow for better advocacy and changes.

The Autism Science Foundation and the UJA Federation of New York have teamed up with the Interactive Autism Network (IAN) to gather data in a survey.

Now is the chance to be heard. Autistic adults, parents of autistic adults and representatives of autistic adults are encouraged to participate. Details are below in a message from Alison Singer at the Autism Science Foundation.

Now is the chance to be heard.

We need your help!

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN) – the world’s largest online autism research project — and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time. IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

· An adult with ASD who is independent
(that is, you are not under anyone’s legal guardianship)

· The parent of an independent adult with ASD
(that is, your adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions)

· The legally authorized representative of a dependent adult with ASD
(For example, you may have legal guardianship or medical power of attorney for the adult with ASD)

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here.

To begin registration and the survey, click on the link below:
http://bit.ly/ORf7d5

If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org.

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most. Thank you in advance for your support and please forward this email to any individuals or groups who may be interested in participating.

Sincerely,

Alison Singer
President, Autism Science Foundation

The press release can be found on the Autism Science Foundation’s website.


By Matt Carey

Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders

9 Oct

In the past few years there has been a great deal of discussion on wandering and autism. Wandering as in elopement, running away, leaving a home or group. With people who are not independent this can obviously be a dangerous situation.

The U.S. Interagency Autism Coordinating Committee (IACC) had much discussion on wandering. The previous IACC had a Subcommittee on Safety and provided HHS Secretary Sebelius with a letter on the subject. One hot topic was whether a medical code should be created to track wandering as there was little hard data on the topic.

One result of this discussion was a study to answer: how prevalent is wandering? Anecdotally we knew the answer was going to be that there is a high prevalence. Now there are numbers to back that up from a study published in the journal Pediatrics.

Here is the abstract:

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.

RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.

CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.

Usually with papers like this I try to obtain a copy in advance to review when it is released. last week and this week are too busy for that. The Autism Science Foundation blog has a discussion of the paper in New Study Confirms Autistic Wandering is Widespread. Autism Science Foundation president Alison Singer was one of the forces behind getting this study accomplished, along with Lyn Redwood of SafeMinds and there was support from the National Autism Association and Autism Speaks.

Often on such high profile papers, the full paper is made available to the public. Apparently not in this case.


By Matt Carey

Autism Science Foundation to Develop Brain Tissue Awareness Campaign

3 Oct

One thing I learned at IMFAR last year was that brain tissue is critical to many areas of autism research and that there is very little tissue available for research. OK, that’s two things. This year saw an amazingly sad event where a large number of brain tissue samples were ruined in a freezer failure.

The ASF’s announcement is below and also on their website as Autism Science Foundation to Develop Brain Tissue Donation Awareness Campaign with Support from Simons Foundation

The Autism Science Foundation has received a two-year, $600,000 grant from the Simons Foundation to develop a multi-media campaign designed to increase awareness of the importance of brain tissue donation to further autism research.

“No effort is more important than raising awareness among families and scientists about the need for research on human brain tissue,” said Dr. Gerald Fischbach, Director of the Simons Foundation Autism Research Initiative.

Brain tissue research is critical for developing effective prevention and treatment options for autism but research in this area has lagged because of lack of tissue.

“In every area of medicine,” said Dr. Thomas Insel, Director of the National Institute of Mental Health, “new diagnostics and new treatments have come from studying the affected organ. In autism, we have been challenged by trying to understand a complex neurodevelopmental disorder without having enough brain tissue available for study. In so many ways, our ability to deliver for families with autism depends on the success of this effort.”

ASF President Alison Singer will serve as principal investigator on the project. Prior to founding the Autism Science Foundation, Singer served as Executive Vice President for Communications and Awareness at Autism Speaks, where she developed and co-produced the award-winning “The Odds” autism awareness campaign in conjunction with the Ad Council.


By Matt Carey

ARC: Action Alert: Call Today and Help Protect Federal Disability Programs

20 Sep

Last year the United States legislature avoided tough decisions by putting automatic spending cuts into the budget. The phrase “kick the can down the road” was common in the press in discussing the budget negotiations which were ongoing and now we are “down the road”: those cuts are slated to start in 2013. After the elections, I’ll point out. Discretionary programs will see substantial cuts unless the law is changed. Discretionary programs include special education and services for the disabled.

The ARC has put out an action alert to gather support to change the law to reduce those cuts:

Call Today: Help Protect Federal Disability Programs Take Action!
Today is Non-Defense Discretionary (NDD) Call Day

Take Action!

Background

While The Arc has been successful so far in its advocacy to prevent cuts to the Medicaid program, many other essential programs are facing severe reductions. The federal discretionary programs that people with disabilities rely upon to live in the community (early intervention, special education, supported employment, housing, transportation, and more) are slated for unprecedented cuts starting in 2013.

Last year’s Budget Control Act (BCA) will require non-defense discretionary programs to be cut dramatically, unless Congress changes the law. First, they will be cut by about 6% over a decade through the BCA’s spending caps. Then they are scheduled to be cut by an additional 8 % through the BCA’s across-the-board cuts (known as “sequestration”) starting in early 2013. The individual programs we care most about could possibly be cut by even greater amounts or eliminated entirely!

Examples of individual programs that could be cut are:

IDEA State Grant that assists the states in meeting the costs of providing special education and related services to children with disabilities.

DD Act Projects of National Significance (PNS) that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities.

CDC National Center on Birth Defects and Developmental Disabilities that sponsors research and interventions to help children with disabilities to develop and reach their full potential, and promotes health and well-being among people of all ages with disabilities.

Section 811 Supportive Housing for People with Disabilities that creates affordable, accessible housing for low-income non-elderly people with the most serious disabilities to help them live independently in the community.

Take Action

Please call your Members of Congress and remind them of the importance of these critical programs. Click on the Take Action link above to get your Members’ office phone numbers.

Autism Science Foundation: “In 2 Minutes, Help Us Win $10K! Vote For Autism Science”

12 Sep

The Autism Science Foundation funds, well, autism science. They are working to win a $10,000 grant from Chase in the Chase Community Giving contest. ASF discusses this on their blog as In 2 Minutes, Help Us Win $10K! Vote For Autism Science

The idea is simple–vote for them and if they get enough votes they get $10,000. Costs you nothing but a couple of minutes of your time. (If you are using Facebook, you have a couple of minutes to spare!)

Here are some questions and answers about the contest from the ASF page:

How do I vote for ASF?
On the Chase Community Giving voting page, search for “Autism Science Foundation” to find ASF’s page then click Vote and follow instructions to share with your friends to vote again!

How many times can I vote?
All Facebook users are eligible for one vote during the contest, which ends September 19th, and an additional vote for “sharing” your vote with your Facebook friends. Finally, Chase card holders are eligible for a 3rd vote. All votes may be cast for the same charity.

How do I access additional votes?
Chase cardholders may cast their additional vote here. Also, don’t forget to “share” your vote with your friends after you’ve voted to gain an additional vote!

Thanks for Chasing Down the Causes of Autism with Autism Science Foundation!

If you missed the links above, you can vote for them using this link to Facebook.

NIH awards $100 million for Autism Centers of Excellence Program

7 Sep

The U.S. National Institutes of Health (NIH) Have awarded $100 million over five years to the next Autism Centers of Excellence (ACE). The press release discussing the groups and their focus is below:

NIH awards $100 million for Autism Centers of Excellence Program
Nine grantees receive research funding over next five years

The National Institutes of Health has announced grant awards of $100 million over five years for the Autism Centers of Excellence (ACE) research program, which will feature projects investigating sex differences in autism spectrum disorders, or ASD, and investigating ASD and limited speech.

The disorders are complex developmental disorders that affect how a person behaves, interacts with others, communicates and learns. According to the Centers for Disease Control and Prevention, ASD affects approximately 1 in 88 children in the United States.

NIH created the ACE Program in 2007 to launch an intense and coordinated research program into the causes of ASD and to find new treatments.

“The ACE program allows NIH institutes to leverage their resources to support the large collaborative efforts needed to advance the broad research goals of the Interagency Coordinating Committee Strategic Plan for ASD research,” said Alice Kau, Ph.D., of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), one of five institutes funding the ACE program. “This year, the program has expanded to such areas as children and adults who have limited, or no speech, possible links between ASD and other genetic syndromes, potential treatments and the possible reasons why ASD are more common among boys than girls.”

In addition to the NICHD, the NIH institutes that support the ACE program are the National Institute on Deafness and Other Communication Disorders, the National Institute of Environmental Health Sciences, the National Institute of Mental Health and the National Institute of Neurological Disorders and Stroke.

The nine awards for 2012 will support research at individual centers or at research networks, which involve multiple institutions, dedicated to the study of ASD.

Grants were awarded to research teams led by the following investigators:

2012 Center Grants

Susan Bookheimer, Ph.D. (University of California, Los Angeles)—This research group will use brain imaging technology to chart brain development among individuals having genes suspected of contributing to ASD. The researchers hope to link genetic variants to distinct patterns of brain development, structure and function in ASDs. Researchers in this center also are investigating treatments that will improve social behavior and attention in infants and acquisition of language in older children with ASD.

Ami Klin, Ph.D. (Emory University, Atlanta)—The Emory team will investigate risk and resilience in ASD, such as identifying factors associated with positive outcomes or social disability, starting in 1-month-old infants and will begin treatment in 12 month olds in randomized clinical trials. Through parallel studies in model systems, the researchers will chart brain development of neural networks involved in social interaction. This center will increase understanding of how ASD unfolds across early development.

Helen Tager–Flusberg, Ph.D. (Boston University)—Many individuals with ASD fail to acquire spoken language, and little is known about why this is so. This research team will use brain imaging technologies in an effort to understand why these individuals do not learn to speak, with the goal of helping them to overcome this limitation. The research team will also test new approaches to help young children with ASD acquire language.

2012 Network Grants

Connie Kasari, Ph.D. (University of California, Los Angeles)—This network will compare two types of intensive, daily instruction for children with ASD who use only minimal verbal communication. Earlier research has shown that even after early language-skills training, about one-third of school aged children with ASD remain minimally verbal. Researchers plan to enroll 200 children in four cities: Los Angeles, Nashville New York City, and Rochester, N.Y.

Kevin Pelphrey, Ph.D. (Yale University, New Haven, Conn.)—A team of researchers from Yale, UCLA, Harvard, and the University of Washington will investigate the poorly understood nature of ASD in females. The project will study a larger sample of girls with autism than has been studied previously, and will focus on genes, brain function, and behavior throughout childhood and adolescence. The objectives are to identify causes of ASD and develop new treatments. According to the U.S. Centers for Disease Control and Prevention, ASD are almost 5 times more common among boys (1 in 54) than among girls (1 in 252).

Joseph Piven, M.D. (University of North Carolina at Chapel Hill)—This research group previously used brain imaging to show atypical brain development at age 6 months in infants who were later diagnosed with ASD. The group now plans to follow another group of infants at risk for ASD. In this study, they will do more frequent scans throughout infancy and until age 2, to gain a greater understanding of early brain development in children with ASD.

Abraham Reichenberg, Ph.D. (Mount Sinai School of Medicine, New York City)—Researchers in this network will embark on an ambitious attempt to understand how genetic and environmental factors influence the development of autism. The researchers will analyze detailed records and biospecimens from 4.5 million births involving 20,000 cases of ASD, from 7 countries (the United States, Australia, Denmark, Finland, Israel, Norway, and Sweden.) The analysis will span three generations and involve grandparents, parents, aunts, uncles, and siblings and cousins.

Mustafa Sahin, M.D., Ph.D. (Harvard Medical School, Boston) and Darcy Krueger, M.D., Ph.D. (Cincinnati Children’s Hospital and University of Cincinnati)—This network will recruit patients with tuberous sclerosis complex, a rare genetic disease that causes tumors in the brain and other vital organs. Patients with tuberous sclerosis complex have an increased risk for developing autism. The researchers will track brain development in infants diagnosed with tuberous sclerosis complex, to gain insights into how autism develops.

Linmarie Sikich, M.D. (University of North Carolina at Chapel Hill)—The researchers will test whether treatment with oxytocin nasal spray can improve social interaction and communication in children with ASD. Oxytocin is a neuropeptide (used by brain cells to communicate) and has been associated with social behaviors. The researchers plan to enroll 300 children with ASD between 3 and 17 years old from Boston, Chapel Hill and Durham, N.C.; Nashville, New York City, and Seattle.

Additional information about ASD is available at http://health.nih.gov/topic/Autism.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.


By Matt Carey

Note: this was originally published without a title

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.


By Matt Carey