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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

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.

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

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)
Human genetics/genomics
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

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

By Matt Carey

Autism Science Foundation interview with Celine Saulnier of the Marcus Autism Center

13 Apr

The Autism Science Foundation is hosting an interview with Celine Saulnier of the Marcus Autism Center today at 12 noon Eastern Time. The interview will be on the ASF Facebook page

Autism Science Foundation fundraiser on Philanthroper

12 Apr

The Autism Science Foundation (ASF) is running a fundraiser on Philanthroper. These are short (1 day) fundraisers with small amounts ($1 to $10). Below is the text from the fundraiser.

“You can make a big difference with money placed in the right scientific hands.”

– Alison Singer, Autism Science Foundation

It’s Autism Awareness Month. We know a lot and a little about it. We know it’s a development disorder affecting about 1:88 people. We know it affects boys four times more than girls. We know it can make simple communication and social interactions impossibly difficult for those who have it.

We don’t know “the cause,” but we strongly suspect a large genetic component since identical twins will usually share a diagnosis.

We do know we need to learn more.

The Autism Science Foundation is a new group of parents and doctors united to fund the freshest, most exciting ideas to track down the causes of autism and develop evidence-based treatments.

And they’re really good at leveraging small grants to young, driven researchers – like doctoral students – to explore promising new ideas.

“That first grant can make a huge difference,” explains President Alison Singer. “That’s the money that’s dried up from the federal government. That’s what makes or breaks someone’s career.”

It’s a smart approach: don’t write the biggest checks, just try to write the most important ones. Fund a researcher just enough to explore an idea and gather preliminary data. Then, with this germinating seed of science, a researcher can apply for a larger grant somewhere else to continue the work.

And sometimes, most of the legwork of this research has been completed in the umbrella of another study – there’s just no way to see it through.

“You’ll have a student working on another grant who says, ‘wow, we should also be looking at this function, or this particular protein,'” explains Singer. “That only takes a little bit of extra money.”

Given the ASF’s focus on young, driven minds, it’s not surprising that they themselves are a hot startup in the world of autism nonprofits. Nor is it surprising that they’ve already funded successful research at Johns Hopkins.

That said, they can only do what they do by raising money.

“We run this foundation on a shoestring,” says Singer. “At the end of the year, and we write those grant checks and the treasury goes down to zero. The money does not do anyone any good sitting in Citibank.”

Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders

9 Apr

A study from the U.C. Davis MIND Institute was published today in the journal Pediatrics: Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders. The link is to the abstract, but the full paper is available free for download.

The paper is part of the CHARGE Study. (CHARGE: Childhood Autism Risks from Genetics and the Environment). The study looked for increased risk of a child being diagnosed autism if the mother had metabolic conditions during pregnancy. The metabolic conditions studied were diabetes, hypertension and obesity. They found a possibly heightened risk of autism for these pregnancies. I wrote a more in-depth summary which is available at the Autism Science Foundation blog .

Autism Science Foundation live chat with Kevin Pelphrey Friday 12noon eastern time

5 Apr

The Autism Science Foundation will host live interviews with scientists and policy makers during the month of April (Autism Awareness Month). These will be hosted on their facebook page. These will be in a chat format where, as ASF puts it:

“Have questions for an autism researcher? Join us for a live, online chat tomorrow at 12PM ET where YOU can interview Kevin Pelphrey of the Yale Child Study Center.”

The interview/chat with Prof. Pelphrey will be held tomorrow, Friday April 5, at noon eastern time on the Autism Science Foundation facebook page.

Here’s more on Prof. Pelphrey:

Work in Dr. Pelphrey’s laboratory focuses on discovering brain mechanisms underlying the development of different aspects of social cognition including social perception (the initial stages of evaluating the intentions and goals of others by analysis of biological motion cues), theory of mind (the ability to make inferences about the mental states of others), and the perception and regulation of emotion. This work employs cognitive neuroscience methods including functional and structural magnetic resonance imaging, diffusion tensor imaging, imaging genetics, visual scanpath recordings, and virtual reality techniques.

The laboratory conducts studies focused on fundamental questions regarding the typical and atypical development of social cognition in children with and without autism spectrum disorders and other neurodevelopmental disorders. By studying the normal ontogeny of the brain mechanisms underlying social cognition and the abnormal development of these mechanisms in children with autism and other neurodevelopmental disorders, the Pelphrey laboratory is working to uncover the building blocks for complex, multi-faceted, social cognitive abilities.

Dr. Pelphrey has received a Scientist Career Development Award from the National Institutes of Health, a John Merck Scholars Award for his work on the biology of developmental disorders, and the American Psychological Association’s Boyd McCandless Award for distinguished early career theoretical contributions to Developmental Psychology. His research program is funded by the National Institutes of Health, the Simons Foundation, Autism Speaks, and the National Science Foundation.

Apply for IMFAR Travel Grant from the Autism Science Foundation

23 Feb

Are you interested in attending IMFAR (the International Meeting for Autism Research)? The 2012 conference will be held in Toronto, May 17 – May 19. I attended last year in San Diego with the assistance of the Autism Science Foundation (ASF) through a travel grant. If it was possible, I would go this year as well even without the grant.

Applications are open for this year’s ASF travel grants but the deadline (February 29) is coming very quickly. If you are thinking of applying, now is the time.

Here is the announcement from the Autism Science Foundation
. I’ll highlight this section:

Applicants should send a letter to describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.

Below is the announcement in full:

We are now accepting applications for travel grants to send a limited number of parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards cover up to $1,000 of expenses to be used for registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. Grantees are responsible for obtaining international travel documents.

Applications must be received by February 29, 2012.

Grant Requirements:

Grantees must submit the original receipts for reimbursement and are expected to submit completed travel expense forms within 15 days of return from IMFAR.
Grantees are asked to participate in ASF related activities at IMFAR including a group photo and social media promotion. Full details will be shared closer to the event.
After attending the conference, grantees are asked to share what they learned in their own communities to further spread the knowledge gained within 6 months of attending IMFAR. Grantees are asked to send a short write-up plus photos or a video of their activity for use by ASF.

To apply:

Open to autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, and others.
Grants are awarded to US residents only, over 18 years of age.
Applicants should send a letter to describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.
Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins.
In the email subject line please write: IMFAR Grant.
Letters must be received by February 29, 2012.

Recipients will be announced in late March.