The Autism Science Foundation Applauds Introduction of New Medical Code for Wandering

The Autism Science Foundation applauds the announcement of a new ICD-9 subclassification code for wandering. Dr. Coleen Boyle, Director of the CDC’s National Center for Birth Defects and Developmental Disabilities, announced the formation of the new code this week at the Interagency Autism Coordinating Committee Meeting.

The ICD-9-CM code for wandering will become effective October 1, 2011 It is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

“There are individuals who, at times in their lives, may need additional services and supports to keep them safe” said Dr. Boyle. “Having a classification code can help facilitate recognition of this issue, when appropriate, for an individual so that the person, to the greatest extent possible, the caregivers, and healthcare providers can work together to develop an appropriate intervention and prevention plan.”

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations—making this an important safety issue for individuals affected and their families and caregivers. A recent survey, conducted by the Interactive Autism Network and funded by a consortium of autism advocacy groups led by the Autism Science Foundation, recently reported that children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders. The survey, led by Dr. Paul Law of the Kennedy Krieger Institute, found that approximately 50% of children with autism eloped, with the behavior peaking at age four. Among these families, nearly 50% say that their child went missing long enough to cause significant concern about safety.  35% of parents reported their missing child had a close call with a traffic injury and 32% of parents reported a close call with a possible drowning. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers.

Earlier this year, the Interagency Autism Coordinating Committee created a Safety Subcommittee to address wandering and other safety issues for children and adults with ASDs. ASF President Alison Singer serves as co-chair of this committee. Dr. Boyle, a member of the subcommittee, submitted a proposal for the wandering code to the ICD-9-CM Coordination and Maintenance Committee for consideration at the March 2011 meeting.

This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a subcode under the Alzheimer’s and dementia code and added as a condition to be noted in association with disorders classified elsewhere [V40.31]. The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering.

The Importance of Early Intervention

Certainly, we are all too familiar with the unfortunate reality that there is no tailor-made treatment for all forms of autism. Different combinations of drugs that may work well in some individuals may be ineffective in others, and the same rule seems to apply to therapy and other forms of care. However, there is one form of treatment that proves effective in every single application: early intervention. With incredible improvements in diagnostic techniques, specialists are now able to diagnose autism spectrum disorders in infants as young as six months.

The above study, published in the journal Pediatrics and conducted by researchers at the University of Washington, provides solid, empirical evidence as to the positive effects of early intervention. Autistic infants and toddlers as young as 18 months were placed into specially designed groups administered by UW specialists. The children placed into the specialized groups received approximately 20 hours of therapy a week from the UW team, and five hours a week of parent-led therapy. Five years after the beginning of the study, researchers noted an 18 point increase in IQ among the children involved in the study, compared to the four point improvement of children in the control group (a standard community intervention group). Moreover, children in the specialized group also improved receptive language skills (listening to and understanding speech) by 18 points, compared to 10 points in the control group.

Clearly, the application of intensive, early and specialized intervention in children with autism can prove to be quite effective. But what does this all mean? Plainly, it allows autistic individuals access to care at a younger age, when the brain and cognitive systems are in their nascent stages of development. The earlier an autistic child receives care, the better his or her prospects for living a fruitful and productive life become. The American Academy of Pediatrics recommends screening for autism at 18 and 24 month check-ups, simply to reinforce the idea that autism, when caught early, can be treated even more effectively. For all of the advancements we have made in the past few decades, for all of the science that has helped revolutionize treatment, nothing can replace early intervention as the most effective weapon for combating autism.

Ben Rimland is an Intern at the Autism Science Foundation. 

Former First Lady Rosalynn Carter To Keynote KiDA’s 3rd Annual Summit on Autism

ASF co-sponsors KiDA Conference that will highlight autism’s impact on the family and technology’s impact on autism

Kids Institute for Development and Advancement (KiDA), a premier center for autism treatment, hosts its Third Annual Summit on Autism Saturday, September 17, 2011, at the University of California, Irvine’s Bren Events Center, beginning at 8:00 am. The national conference on issues related to autism and mental health will have two themes: (1) Autism and its impact on family, and (2) Technology and its impact on autism. The Summit is aimed at parents, grandparents, teachers, doctors, therapists, and other community members affected by autism.

UC Irvine Chancellor Michael Drake, M.D. will open the Summit and Former First LadyRosalynn Carter will deliver the keynote address, discussing the impact of autism on the entire family. For over three decades, Mrs. Carter, who founded the Carter Center’s Mental Health Task Force and has authored three books related to mental health and caregivers, has advocated for positive changes in the mental health field. She also will sign her new book, Within Our Reach: Ending the Mental Health Crisis.

“We hope that we can have a positive impact on both awareness of autism and potential solutions to help families impacted by autism in California and nationwide,” says Fariborz Maseeh, KiDA’s founder and a parent dealing with autism.

In addition to Mrs. Carter, the summit’s first panel on the impact of autism on the family will include the following nationally recognized autism experts: Dr. Wendy Goldberg, Professor of Psychology & Social Behavior and Education at UC Irvine; Dr. Connie Kasari, Professor of Psychological Studies in Education and Psychiatry at UCLA; and Alison Singer, President of the Autism Science Foundation.

The second panel will highlight technological advancements and their impact on autism, with expert presenters including: Dr. Howard Shane, Professor at Harvard Medical School and the Director of the Center for Communication Enhancement and Autism Language Program at Children’s Hospital Boston; and Dr. Matthew Goodwin, Director of Clinical Research at the MIT Media Lab and Co-Director of the Autism Technology Initiative at MIT.

Other participating experts include faculty from UC Irvine and CHOC Children’s Hospital.

Following the summit, attendees will have the opportunity to view and participate in an interactive showcase of the latest technological advancements related to autism, presented by Drs. Shane and Goodwin.

About Autism and KiDA:  Autism is a social epidemic that currently affects one in every 91 children. Kids Institute for Development & Advancement (KiDA) is an integrated center of excellence for the diagnosis and treatment of Autism Spectrum Disorder located in Irvine, California. KiDA’s state-of-the-art facility provides education, therapy, and medical services by expert staff. In addition to social groups and individual therapy, KiDA offers a full-time school featuring individualized, comprehensive education for kids with autism. For more information or to schedule a tour (16832 Red Hill Avenue, Irvine, CA 92606), call 949.222.2214 or visit

In addition to KiDA, Summit co-sponsors include:

University of California, Irvine: Founded in 1965, UC Irvine is a top-ranked university dedicated to research, scholarship and community service. Led by Chancellor Michael Drake since 2005, UC Irvine is among the most dynamic campuses in the University of California system, with nearly 28,000 undergraduate and graduate students, 1,100 faculty and 9,000 staff. Orange County’s largest employer, UC Irvine contributes an annual economic impact of $4.2 billion.

CHOC Children’s: Named one of the best children’s hospitals by U.S. News & World Report (2011-2012), CHOC Children’s is exclusively committed to the health and well being of children through clinical expertise, advocacy, outreach and research that brings advanced treatment to pediatric patients. Affiliated with the University of California, Irvine, CHOC’s regional healthcare network includes two state-of-the-art hospitals in Orange and Mission Viejo, several primary and specialty care clinics, a pediatric residency program, and four centers of excellence – The CHOC Children’s Heart, Neuroscience, Orthopedic and Hyundai Cancer Institutes.

For OC Kids: For over 10 years, For OC Kids Neurodevelopmental Center has provided comprehensive care for children with autism and a wide range of developmental, behavioral, and learning disorders. This UC Irvine/CHOC Children’s collaborative program offers assistance at early stages, including evaluations and diagnoses, and continued care throughout adolescence, including treatment, education, and support for both children and families.

The Autism Science Foundation: The Autism Science Foundation provides funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. This nonprofit organization also equips the public with information about autism and the needs of individuals and families affected by autism.

Interview with Dr. Ricardo Dolmetsch

Ricardo Dolmetsch, Ph.D., is an assistant professor of neurobiology at Stanford University. In 2007 he received the Society for Neuroscience Young Investigator Award, and in 2008 he received the NIH Pioneer Award for his work with induced pluripotent stem cells to study autism. Dr. Dolmetsch was a keynote speaker at IMFAR 2011. ASF intern Max Rolison interviewed Dr. Dolmetsch about his research and his unique role as both a scientist and the parent of a child with autism.

Max Rolison: How did you first become interested in autism research?

Ricardo Dolmetsch: I became interested in autism research because my son has autism. We always knew there was something different about him, but when he was four he was formally diagnosed. I think we went through the kind of stages that every parent goes through. The first stage was denial. That was followed by, “what can we do,” so we tried all of the available treatments. I happen to be a neurodevelopmental biologist, so I started to look at the literature and in those days there was very little in the way of any biological understanding of the disease, and there were no drug targets. So I decided to change the direction of my lab to do that.

MR: You previously researched calcium channels. How does your previous work relate to your autism research?

RD: Serendipitously, it turns out there are a couple of mutations in one calcium channel, and possibly mutations in another calcium channel that are associated with syndromic forms of autism. For me, it was actually sort of helpful because it allowed me to connect stuff I knew about to stuff I knew nothing about. Specifically, there is a mutation in the CaV1.2 channel, also called the L-type calcium channel, which leads to something called Timothy Syndrome, which is a very penetrant, but very rare form of autism. There are also much more common mutations, in the same channel, that are associated with bipolar disorder. And there are mutations in a different member of the same family that are also associated with autism. So that’s how the two parts of my career are related. Continue reading “Interview with Dr. Ricardo Dolmetsch”

Interview with Dr. Craig Powell

Craig Powell, M.D., Ph.D., is an assistant professor of neurology and psychiatry at the University of Texas Southwestern. Dr. Powell developed the first-ever animal model of autism, and he is the mentor of ASF 2011 post-doctoral grantee Haley Speed. ASF intern Max Rolison interviewed Dr. Powell about his current research and the use of mouse models in the study of autism.

Max Rolison: How did you get interested and involved in autism?

Craig Powell: I got involved in autism research when I was interested in molecular basis of cognitive behaviors. I learned that some of the trans-synaptic cell adhesion molecules that Dr. Sudhof, my colleague was studying, were implicated genetically in autism. And at the same time another colleague Luis Parada was studying mice with a conditional knockout of the gene PTEN and as I was helping him to characterize the behavior and cognitive function of the animals, a paper came out suggesting that the PTEN mutation was linked to autism, and so suddenly I was studying three or four different mouse models of genetic causes of autism. And that’s basically how I got my start.

MR: What is a knockout and knock-in mouse model?

CP: A knockout mouse model is one in which you remove the gene of interest, and a knock-in mouse model in which you place something into the mouse genome instead of normal gene.  For example, putting an autism-causing mutation into a mouse gene. Continue reading “Interview with Dr. Craig Powell”

%d bloggers like this: