Data Collection on Autism-Related Wandering Begins

Today, the Interactive Autism Network (IAN), with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

• How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
• Which individuals with ASD are most at risk? At what age?
• What burden do efforts to thwart elopement behavior place on caregivers?
• What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

New ASF Grants will fund Animal Models, Treatment, Biomarkers and More

(March 21, 2011)  The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced the recipients of its annual pre and post doctoral fellowships.  In all, $220,000 in grants will be awarded to student/mentor teams conducting research in autism interventions, early diagnosis, biomarkers, and animal models. This funding level represents a 22% increase over last year’s training fellowship grants.

“We are thrilled to be increasing our funding in only our second year of operations, and to be supporting such high quality grants”, said Autism Science Foundation co-founder Karen London.  “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

The following new projects have been selected for funding:

Post Doctoral Fellowships:

Dr. Jill Locke and Dr. David Mandell: University of Pennsylvania
Implementing Evidence-Based Social Skills Interventions in Public School Setting

Several successful social skills interventions for children with autism have been developed for use in school settings. Children who receive these interventions from a research team show marked improvements in friendships and playground behavior, but these gains usually fail to maintain because the school staff do not continue the intervention after the research study ends. In this study, we will modify one of these social skills interventions that was designed for skilled clinicians to use so that it can be used by school aides to improve the social involvement of children with ASD in schools. We then will test the intervention to see whether the intervention is as successful when aides deliver it. Training aides will increase children’s opportunities to practice social skills with their peers at school and increase opportunities for generalization and maintenance of skills, since aides are so frequently present during social periods such as recess and lunch.  If successful, this project will provide school districts with a cost-effective, easily implemented, and sustainable program that improves socialization in children with ASD within school settings. Once aides are trained, schools will have a built-in mechanism for continued success that will help many children with ASD and their families address the social challenges associated with ASD.

JADD: No evidence for brain mitochondrial dysfunction in children with ASD.

This post was written by the study’s principal author, Dr. Stephen Dager. The study was published in the Journal of Autism and Developmental Disorders.

A new study by a team of University of Washington researchers investigated the role of brain mitochondrial disease in children with autism spectrum disorders (ASD). Children with ASD, in comparison to children with other developmental disorders and typically developing children, were studied longitudinally between 3 and 10 years of age. A combination of MRI and magnetic resonance spectroscopic imaging were used to test for structural and brain tissue chemical markers that are found with brain mitochondrial dysfunction. The study found no evidence for brain mitochondrial dysfunction in ASD. Importantly, there was no evidence for early or progressive brain mitochondrial dysfunction underlying symptom expression in ASD.

Prior work at the University of Washington and Harvard University using similar imaging techniques has led to the detection of subtle evidence for brain mitochondrial dysfunction in other disorders, such as Bipolar Disorder. Although ‘the absence of proof is not proof of absence’, this study found no evidence to support a primary role for brain mitochondrial dysfunction underlying ASD. As a consequence, these findings suggest that autism research resources would be more usefully focused on other possible causes of ASD. These findings also put into question the benefits of some currently popular treatments for ASD, such as hyperbaric oxygen.

Keep Our Loved Ones Safe From Wandering-Related Injuries and Death

We have a unique opportunity to provide protection for our family members from autism-related injuries and death, but we need to act quickly.

The ICD-9-CM Coordination and Maintenance Committee is currently considering a proposal to create a medical diagnostic code for wandering.  A diagnostic code for wandering will help protect at-risk individuals who have a documented history of wandering and will help to avert dangerous restraint and seclusion practices.

ASF strongly supports the proposal to include an ICD-9 CM secondary diagnostic code for “wandering in conditions classified elsewhere” under subcode “signs and symptoms”, where it can be applied to a range of disorders including autism,  as suggested by the Centers for Disease Control and Prevention.  This is a critical addition to the diagnostic code.  Every year, individuals with autism wander away from safe environments and are injured or killed due to drowning,  exposure to the elements or accidents. Better data on wandering associated with autism and other developmental disabilities should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand wandering and develop proper emergency protocols and responses while supporting self-determination principles.    A subclassification for “wandering” is an important, needed addition.

ASF is working with the National Autism Association and other autism advocacy groups to protect our family members from both wandering related injury (and death) and restraint & seclusion.  This new diagnostic code has the potential to do both. Here are just a few of the reasons we support adding a diagnosis code for wandering:

• A diagnostic code for wandering in disabled minors could open up critical dialogue between physicians and caregivers that have an at-risk child with a history of wandering/elopement from safe environments.

• A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention-education for doctors, caregivers, school administrators and staff, first responders/search personnel.

• Many nonverbal ASD individuals are unable to respond to their name when called. A diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.

• Every disabled individual with a history of wandering – along with increased risk of injury, trauma and death because of wandering — deserves access to safety devices and prevention materials regardless of the caregiver’s income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.

• A medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Oftentimes wandering is not viewed as a medical condition, but one of choice, bad behavior, or happenstance. This has led to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.

• Children and adults with ASD who suddenly flee, bolt or run (elope) because of a trigger are at greater risk of restraint. A medical code will help establish protocols that work to eliminate triggers, thereby eliminating the need for restraint.

Please take these two action steps right now:

First, sign the NAA petition in support of protecting our family members!

Second, send a brief public comment to CDC indicating your support for protecting our family members. Two or three sentences will suffice.  Simply write: “I support the ICD-9 proposal to create a medical diagnostic code for wandering.” Share your family’s personal story with the CDC. The comment period closes April 1, 2011. Comments can be submitted by e-mail to Donna Pickett, Co-Chair of the Coordination and Maintenance Committee, at DPickett@cdc.gov

The Autism Science Foundation, together with other leading autism advocacy groups, is funding the first major survey to study, quantify and categorize the experience of wandering and elopement among individuals with autism spectrum disorders through the Interactive Autism Network (IAN). The survey is expected to be released later this month. Other funders are the Autism Research Institute, Autism Speaks, and the Global Autism Consortium.

Seaver Autism Center Advances in Autism Conference — Register Now!

The Seaver Autism Center Advances in Autism Conference will be held on Sunday, April 3, 2011 at Mount Sinai School of Medicine. Chaired by Dr. Joseph Buxbaum, Director of the Seaver Autism Center, the conference is designed for healthcare professionals, educators, social workers and family members, and will feature Dr. Stephen Shore, EdD, who will give the Keynote Presentation, “Life on and Slightly to the Right of the Autism Spectrum: An Inside View Towards Matching Best Practice to Needs.” Dr. Shore will share his autobiographical story, and he will also demonstrate what it feels like to have autism.

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To view the Conference Brochure, go to: http://bit.ly/SeaverAACBrochure

For more information, please contact Jessica Brownfeld at jessica.brownfeld@mssm.edu.

To register, please go to http://www.mssm.edu/cme/courses/autism or contact Jeanette Cotto at jeanette.cotto@mssm.edu.

AUTISM SCIENCE FOUNDATION ANNOUNCES IMFAR STAKEHOLDER TRAVEL GRANT RECIPIENTS

IMFAR Stakeholder Travel Awards will Support Parents, Individuals with Autism, Teachers & Students

(March 10, 2011—New York, NY)—

IMFAR 2011 will be held in San Diego

The Autism Science Foundation, a not for profit organization dedicated to supporting and funding autism research, today announced the recipients of its IMFAR Stakeholder Travel grants. ASF will make 11 awards of up to $1000 to be used to cover expenses related to attending the International Meeting for Autism Research in San Diego in May 2011. After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

This year’s recipients are:

• Geraldine Bliss—Parent
• Matthew Carey—Parent
• Shannon Des Roches Rosa—Parent
• Mark Fornefeld—Self Identified Individual with Autism
• Abby Hare—Graduate Student
• Erin Lopes—Parent
• Molly McGrath—Self Identified Individual with Autism/MIT Media Lab
• Brianna Miller—Special Ed Teacher, Newark Public Schools
• Sharman Ober-Reynolds—Parent/Senior Research Coordinator,SARRC
• Megan O’Boyle—Parent
• Max Rolison—Undergraduate Student

IMFAR is an annual scientific meeting, convened each spring, to promote exchange and dissemination of the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way”, said Alison Singer, President of the Autism Science Foundation. “We are confident that the award recipients will all do a great job of bringing critical new research information to their communities, improving the speed with which the latest data are shared with the broader autism community.”

The Autism Science Foundation is a 501©(3) public charity launched in 2009 whose mission is to support autism research by providing funding to those who conduct, facilitate, publicize and disseminate autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The International Society for Autism Research (INSAR) is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. INSAR was created in 2001. The society runs the annual scientific meeting – the International Meeting for Autism Research (IMFAR) and publishes the research journal “Autism Research”.

Contact Info:

Julie Martin
Events and Media Manager
Autism Science Foundation
jmartin@autismsciencefoundation.org
419 Lafayette Street, 2nd floor
New York, NY 10003

 

A poem by ASF volunteer Nick Lombardi

Thank you Nick!

——————

Behind those eyes
Behind those eyes tells a story,
Stories of struggle, stories of joy,
Stories of mothers crying,
And husbands tightly holding them saying “it’s going to be ok.”Mothers on their knees asking God:
Why my boy?
Why my pride and joy?
Why must this happen to such a perfect soul?
How will this affect my family as a whole?
And they receive no answer, and they feel they are unloved; and given a curse.

But then that mother goes home to that child,
That child who has been branded…
AUTISTIC
That child, that doctors said will never succeed,
Who has a certain glow in his eyes, like northern stars.
And as she looks into his eyes she knows that there’s something more.
Something behind those blank as the night sky eyes,

But as she gazes in those eyes she can’t find what it is that draws her in.
And she hopes and prays that one day she will discover what that is.

As years go by, that mother’s love grows more, and more stories sprout in those eyes.

Stories of children laughing and pointing, shouting out
“Hey look at the retard over there!”
Though the child fully understands, they are unable to form the words to defend themselves,
So they make that weird sound that those kids find so damn funny.
And they make movements with their hands that people love to freakn imitate.

But there’s more.

Stories of constant therapies,
Stories of break throughs, when the boy finally can say in sign language,
I love you!

And as the mother rejoices in this crowing achievement,
That mother finally sees what she’s been looking for.

That behind those eyes there’s more than stories,
More than weird noises and body language.

There’s a voice, one that has been stricken,
Inside crying out,
I wanna speak like them!
I wanna have fun like them!
I wanna dream like them!

But most of all I wanna say!
I love you mommy!

And right there –that mother realizes that they have been answered.
That they have not been cursed.
They learn that they have been given the most pure love of all.
And as time goes on, they learn to appreciate every little milestone, no matter how small.

So don’t judge that child until you too look into their eyes
Because,
Behind those eyes, there hides a boy, wanting to be just like you.
Behind those eyes.