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This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Photo Credit: Eddie~S

Bullying is something that has been around as long as adolescents have been in close proximity to each other.  Whether your children are in large schools or small schools, bullying exists.  With the recent report that ASD children are three times more likely to be bullied than their unaffected siblings, the impact of bullying has taken on a special urgency in my home. (more…)

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Today we are pleased to announce an exciting new partnership with UJA-Federation of New York, an organization dedicated to strengthening the Jewish people and inspiring a passion for Jewish life and learning. We will be working together to launch a survey of the services needs of young adults with autism in the New York metropolitan area. The announcement was made by Travis Epes, chair of UJA-Federation’s Autism Committee, at today’s fifth annual UJA-Federation of New York Hilibrand Autism Symposium.

ASF and UJA-Federation will work with the Interactive Autism Network (IAN) at the Kennedy Krieger Institute at Johns Hopkins University to design and implement the survey.

The survey will gather data from three groups; independent adults 18-35 with autism, parents of independent adults with autism, and parents of adults with autism under guardianship. The goal is to learn more about what leads individuals with autism to have a meaningfully engaged day.  The survey will include questions about employment, leisure, and participation in spiritual activities.

“We want to learn specific information about the drivers of success, so that UJA-Federation and other philanthropic organizations can provide financial support to those types of activities, thus ensuring that the programs that lead to success become more widely available” said Epes.

The surveys are expected to be released in September.  To participate or to receive updates about this project, email contactus@autismsciencefoundation.org, indicating which of the three survey groups best describes your family situation.

Additional support for this project has been provided by the FAR Fund (www.farfund.org).

More About UJA-Federation of New York
For more than 90 years, UJA-Federation has been a central force for communal planning and philanthropy in the New York Jewish community. Through UJA-Federation, more than 60,000 donors pool their resources to help people in need, inspire a passion for Jewish life and learning, and strengthen Jewish communities around the world — to address the issues that matter to us most as Jews and as New Yorkers, such as helping those affected by autism. Working with more than 100 network beneficiary agencies, synagogues, and other Jewish organizations, our reach spans from New York to Israel to more than 60 other countries around the world, touching 4.5 million people each year. Because we do the most good when we do it together. For more information, please visit our website at www.ujafedny.org.

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This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Me: Jared, do you like to be hugged?

Jared: I don’t know.  Kind of.

Me: How does the hug make you feel?

Jared: Pretty happy, bye.

Then he hung up on me.  Such is the life of the mother of an autistic child.  It is so hard to get a conversation out of him, much less a phone conversation with its inherent lack of visual cues and persistently following him around the room.  Jared is also a teenager who wants to do his own thing.

The reason I asked Jared these questions is because a new study out of the Yale Child Study Center by Martha Kaiser (no relation) indicates that individuals with autistic traits may not process hugs as socially rewarding.  Specifically, two areas of the brain, the STS (superior temporal sulcus) and the OFC (orbitofrontal cortex), were found not to be stimulated during slow, light brushes with a watercolor brush.

In my own experience with my son Jared, I remember the day he was born when the nurse placed him in my arms.  I tried to initiate breastfeeding but Jared turned away.  I noticed then that whenever I stroked his cheek like the books said to stimulate the nursing instinct in your baby that my son turned the opposite direction.  I thought I was doing it wrong and I visited with several lactation consultants.  Nothing worked and finally my milk dried up at 12 weeks because Jared just didn’t get the sucking down properly.  I even pumped and used a crooked syringe designed to teach babies how to breastfeed, but nothing worked.  I was so immensely disappointed in myself and felt like a failure as a mother.  The unkind comments of disapproving moms at the mall when I pulled out Jared’s formula bottle added to that pain.  It is amazing how cruel people can be when they don’t know the situation.  To this day I feel like crying when I remember one woman saying “you do know that breast is best” as she shook her head at me.

What I came to realize years later is that not only did Jared have difficulty in the muscle movements needed to suck efficiently, he also did not crave that physical touch that my later born children did.  My three younger children would gently caress my arm, neck or chest area as they nursed and they would squeeze me with their other hand.  It was so enjoyable.  They also curled their body around mine as if we were still attached.  The only time Jared did that as a young infant and child was when he was terrified of something.

In fact, to this day Jared only seems to crave physical contact when he is in distress, such as when he has had a “bad moment” at school or the group home where he now lives or when he has been hospitalized for behavioral problems.  It is bittersweet that I can only get that bonding from him when he is in distress but I tell myself at least he needs me.

Recently Jared called me late at night from his group home, crying hysterically.  He had an altercation with another client at the group home, which is about an hour away from our home, and he wanted me to make him feel better.  I spoke to him in soothing tones over the phone, my heart breaking because I was not beside him to comfort him, and he slowly calmed down.  We did a visualization technique I learned from the book “When My Autism Gets Too Big.”  I guided him through deep breaths and encouraged him to close his eyes and rub his upper legs slowly as we both visualized the creek in Vail, Colorado or the beach at Martha’s Vineyard, two of our favorite vacation stays.

Then Jared asked sadly “Who is going to hug me?”  It was a remarkable thing for him to ask.  My heart was so broken by this point, but I said into the phone “I am, right now.  Wrap your arms around yourself and know that it is me.  I am coming through this phone to hug you right now.”

“Can you read me a story?” he then asked.  “Yes,” I said.  Then I recited “Good Night Moon” from memory and my son fell asleep.  Sometimes a virtual hug is all I can give my son, late at night and so far away.  Our journey with autism is not at all an easy one.  I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions.

The research may indicate there is no social reward but personally I feel the results of the study indicate a different way of expressing and processing the social reward.  Scientists just haven’t decoded the autistic brain’s response to social stimuli yet.  Different does not mean absent.

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This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Photo credit: MNicoleM

Is the rise in the rate of autism primarily a result of successful awareness campaigns?

That was my first thought when I read the Centers for Disease Control’s new prevalence report released last week.  With 1 in 88 children now being diagnosed on the autism spectrum, the urgency to find out why there is a 78% increase in the rise of autism diagnoses from 2002 and 23% since 2006, has never been stronger.

But with increased urgency we must avoid haphazard jumps to conclusion.  This is a 55% increase in diagnoses within only 4 years (from 2002-2006), which to my skeptical eye points to better awareness rather than an acute environmental change. However, it is only through a careful sifting of scientific evidence that we can truly surmise the cause(s) of the dramatic increase – a process which takes time. (more…)

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Nine new projects to be funded

Today we announced the recipients of our annual pre- and postdoctoral fellowships.  Six postdoctoral and three predoctoral grants will be awarded to student/mentor teams conducting research in autism interventions, treatment targets, early diagnosis, biomarkers, and animal models. This represents a 50% increase over last year’s six pre- & postdoctoral grants.

“Last week, when the CDC announced a 23% increase in autism prevalence, the autism community demanded more research to understand what is causing autism and to develop better treatments for individuals with autism,” said ASF Co-Founder Karen London. “We are proud to be able to increase our research funding in response to this national health crisis and we are so grateful to all our donors and volunteers who have come together to support autism research and make this funding increase possible.

This year, ASF will fund $330,000 in fellowship grants. In three years of operations, we have funded $790,000 in pre- and postdoctoral grants.

“ASF attracts excellent applicants across the board, and the top choices are exceptional people representing a broad set of perspectives on autism science,” said Dr. Matthew State, Chair of the ASF Scientific Advisory Board and the Donald J. Cohen Professor of Genetics and of Psychiatry at the Yale Child Study Center & Co-Director, Yale Program on Neurogenetics.

Two projects are co-funded by the FRAXA Research Foundation and the Phelan-McDermid Syndrome Foundation. Additional direct funding for ASF’s pre- and postdoctoral grant program was provided by Bailey’s Team and the Rural India Supporting Trust.

The following projects were selected for 2012 funding:

Postdoctoral Fellowships:

  • Inna Fishman/Ralph-Axel Muller: San Diego State University
    Multimodal Imaging of Social Brain Networks in ASD
  • Karyn Heavner/Craig Newschaffer: Drexel University
    Evaluating Epidemiological and Biostatistical Challenges in the EARLI Investigation
  • Haruki Higashimori/Yongjie Yang: Tufts University
    Role of Astrocytic Glutamate Transporter GLT1 in Fragile X
    Co-funded by: FRAXA Research Foundation
  • April Levin/Charles Nelson: Children’s Hospital Boston
    Identifying Early Biomarkers for Autism Using EEG Connectivity
  • Klaus Libertus/Rebecca Landa: Kennedy Krieger Institute
    Effects of Active Motor & Social Training on Developmental Trajectories in Infants at High Risk for ASD
  • Oleksandr Shcheglovitov/Ricardo Dolmetsch: Stanford University School of Medicine
    Using Induced-Pluripotent Stem Cells to Study Phelan McDermid Syndrome
    Co-funded by: Phelan McDermid Syndrome Foundation

Predoctoral Fellowships:

  • Nina Leezenbaum/Jana Iverson: University of Pittsburgh
    Postural and Vocal Development during the First Year of Life in Infants at HeightenedBiological Risk for ASD
  • Jennifer Moriuchi/Ami Klin: Emory University Marcus Autism Center
    Gender and Cognitive Profile as Predictors of Functional Outcomes in School-Aged Children with ASD 
  • Rebecca Simon/Karen Bales: University of California, Davis  MIND Institute
    The Role of Serotonin in Social Bonding in Animal Models

Learn more about the projects selected for funding here – http://www.autismsciencefoundation.org/current-grantees.

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by Matt Carey

There has been a great deal of media coverage recently about the new autism prevalence estimate released by the CDC. The CDC provides a good summary page on prevalence data as well as the full report. If those who may see the report as a bit long, here is a bit of a summary of the findings.

The United States Centers for Disease Control (CDC) releases autism prevalence estimates as part of their MMWR (Morbidity and Mortality Weekly Report). They also maintain a page of information on autism. Today the CDC released the latest MMWR on autism: Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. The one number from it that will be quoted most often is “1 in 88”, the new prevalence estimate.

The researchers working for the CDC use existing records: school, medical or both. So, in one area they may use school records. In another they may use school and medical records. What they don’t do is actually screen individual children and give them tests like the ADOS. This means that if a kid is not flagged somewhere in the records, they won’t find him/her. On the other hand, they don’t just count which kids already have autism diagnoses. They review the records and evaluate them to determine which kids are autistic or not. They cross check, meaning that for some fraction of the kids they use more than one person to check the records and they see how well the various researchers agree.

The CDC works with groups in a subset of states in the U.S.. For this report they used Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia, and Wisconsin, most of which were used in previous reports.

Overall, the prevalence was 1 in 88 (11.3 per 1,000). This continues the upward trend in prevalence estimates from the CDC. This figure (here for bigger) is from the CDC:

This varied a great deal state-to-state. Alabama had the lowest estimated prevalence at 4.1 per 1,000. Utah the highest at 21.2 per 1,000. Or, there is about a five fold variation in autism prevalence estimates, state-to-state.

Prevalence estimates also varied by race/ethnicity. The report states “the estimated prevalence among non-Hispanic white children (12.0 per 1,000) was significantly greater than that among non-Hispanic black children (10.2 per 1,000) and Hispanic children (7.9 per 1,000). ” The estimate for Hispanic in Alabama was 1.4 per 1,000 and for whites in Utah as 40 per 1,000. More than a 20 fold difference.

This figure (click to enlarge)was interesting in showing two things. First in showing the state-to-state variability in prevalence estimates. The second interesting point to me is the difference between sites with just medical records and those with medical and education records. The sites with health-only records have lower prevalence estimates. i.e. more kids are picked up by their school records.

As with previous CDC reports, a large fraction of the children identified were not classified as autistic previously. This figure (click to enlarge) shows state-by-state and year-by-year what percent were previously unidentified. The figure also shows how many were previously unidentified but where a suspicion of autism was noted. In 2002, as many as 40% in some states were not classified as autistic before their records were reviewed. In general, over time the fraction previously unidentified has gone down. This would be consistent with schools and medical personnel getting better over time with identification of autism.

Many children identified had IQ test scores (or examiner statements) showing “normal” or borderline-normal values. This figure (click to enlarge) shows the percentages in many states with IQ>85, IQ=71–85 and IQ<70 (for children where the IQ data were available).

In Utah, for an extreme example, over 70% of those identified as autistic have IQ scores above 85. The CDC report reads:

When data from these seven sites were combined, 38% of children with ASDs were classified in the range of intellectual disability (i.e., IQ >70 or an examiner’s statement of intellectual disability), 24% in the borderline range (IQ 71–85), and 38% had IQ scores >85 or an examiner’s statement of average or above-average intellectual ability.

I.e. most children were borderline or above. Of course, the other way to read this is most children were borderline or below. Intellectual Disability is roughly defined as IQ below 70, so most children (about 62%) identified as autistic in this report were not intellectually disabled. States with higher prevalence estimates had higher percentages of non-intellectually disabled children.

The prevalence estimates are going up with time.

While ASD prevalence estimates in the overall population increased 23% for the 2-year period 2006–2008, and 78% during the 6-year period 2002–2008, the largest increases over time were noted among Hispanic children and non-Hispanic black children and among children without co-occurring intellectual disability. Better identification in these specific groups explains only part of the overall increase, however, as estimated ASD prevalence increased in all groups when data were stratified by sex, race/ethnicity, and intellectual ability.

The CDC report does have some limitations, and they note two primary limitations:

First, increases in awareness and access to services have improved the ability of the ADDM Network to identify children with ASD over time, and this likely contributes to the increase in estimated prevalence. The proportion of the increase that is attributable to such changes in case ascertainment or attributable to a true increase in prevalence of ASD symptoms cannot be determined. Ongoing monitoring is an important tool to learn why more children are being identified with ASDs and can provide important clues in the search for risk factors.

This study can’t say if there is an increase in the number of autistic children, or if there is, what would be the cause.

Also,

Second, the surveillance areas were not selected to be representative of the United States as a whole, nor were they selected to be representative of the states in which they are located. Limitations regarding population size, surveillance areas, and the consistency of these attributes were considered when analysts evaluated comparisons across multiple time points.

So, these numbers may not represent the United States as a whole.

It is valid to say that while these factors limit the ability of the CDC to define a true autism rate for the United States, the factors that go into these limitations are valid research concerns in themselves. It is very much worthwhile and valuable to ask why there are such variations state-to-state, for example. Answering this could lead to better identification and service provision overall. Likewise, understanding the effects of rising awareness could feed back into more efficient awareness campaigns to, again, help in identifying more autistic children and providing support and services to them.

The CDC concludes:

ASDs continue to be an important public health concern. The findings provided in this report confirm that prevalence estimates of ASD continue to increase in the majority of ADDM Network communities, and ongoing public health surveillance is needed to quantify and understand these changes over time. Further work is needed to evaluate multiple factors affecting ASD prevalence over time. ADDM Network investigators continue to explore these factors in multiple ways, with a focus on understanding disparities in the identification of ASDs among certain subgroups and evaluating temporal changes in the prevalence of ASDs. CDC also is engaged with other federal, state, and private partners in a coordinated response to identify risk factors for ASDs and meet the needs of persons with ASDs and their families. Additional information is available at http://www.cdc.gov/autism.

We need these data. Limitations and all. We need to know what the autism prevalence is, what the makeup is of the autistic population, and where we can do better identifying autisics. Most countries have no autism prevalence information. Other countries have few or even just one study. In my opinion we are fortunate to have the CDC and other researchers focusing on these questions here in the United States.

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The Department of Health and Human Services today announced the names of the fifteen individuals invited to participate as public members of the newly reauthorized Interagency Autism Coordinating Committee (IACC). Among the 15 are Alison Singer, president of the Autism Science Foundation, who was reappointed for a second term. Dr. David Mandell, a member of the ASF Scientific Advisory Board and Matt Carey, parent of a child with autism and frequent contributor to the ASF blog were also appointed.

The committee was initially established in 2006 under the Combating Autism Act and was renewed in late 2011 by the Combating Autism Reauthorization Act.  The committee’s job is to advise the Secretary on research opportunities and emerging needs in the community and to write an annual strategic plan to guide federal spending on autism research.

“I am honored to be reappointed to this committee”, said Singer.  “The needs in our community are so great. We have so much work to do. We need to understand what is causing autism and we need to develop better treatments for children, teens and adults.  And that means we need to increase our investment in autism research. We have learned so much about autism’s genetic and biological underpinnings in the last few years. We have to understand more about what’s going wrong in the brain that causes autism so that we can develop appropriate medical treatments. This is no time for the NIH to back down on autism funding; it’s time to double down.”

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, is eager to begin work with the new members. “The individuals that have been selected by Secretary Sebelius each bring with them a great amount of expertise and valuable insight,” he said. “I have seen the committee’s evolution since its early days and I am hopeful we will continue to build upon previous progress.”

The individuals invited to serve on the renewed Interagency Autism Coordinating Committee include:

Idil Abdull
Ms. Idil Abdull is the parent of a son with autism and Co-Founder of the Somali American Autism Foundation. As a Somali-American mother, she has worked to raise awareness about the high prevalence of autism among Somali immigrants living in Minnesota and has helped to change autism policies in the state. She also has a special interest in serving as a voice for underrepresented groups more broadly, including those that are struggling with language, cultural, and economic barriers as they seek ways to help their family members with disabilities. Ms. Abdull holds a bachelor’s degree in Health Care Administration.

James Ball
Dr. Jim Ball is a Board Certified Behavior Analyst (BCBA-D) who is the President and CEO of JB Autism Consulting. He has worked in the private sector field of autism for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society’s (AS) Board of Directors and is currently the Chair of the National Board. He received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.

Anshu Batra
Dr. Anshu Batra is a developmental pediatrician specializing in autism and early childhood developmental disorders and the mother of two sons with autism spectrum disorder. She currently works in a private practice that provides medical services to more than 600 patients with developmental disabilities, the majority of whom have an autism diagnosis. The practice is unique not only in terms of the racial, ethnic, and socio-economic diversity of its patients, but also in its scope. Dr. Batra has become an outspoken advocate to educate both the professional and lay communities about autism and considers how to best integrate a growing subpopulation of individuals on the spectrum into society. She received her M.D. from the University of Michigan and trained in Pediatrics at the University of North Carolina at Chapel Hill.

Noah Britton
Mr. Britton was diagnosed with Asperger’s syndrome a decade ago as a freshman in college and has spent every year since working directly with people on the spectrum. He is an Adjunct Professor of Psychology at Bunker Hill Community College and has presented on autism as a guest lecturer at the University of Virginia and Tufts University. Prior to that Mr. Britton worked directly with teenagers on the spectrum as head counselor for the Northeast ARC’s Spotlight program and as a drama teacher at the New England Academy in Massachusetts. Mr. Britton currently serves on the scientific/educational advisory board of the Autism Higher Education Foundation. He received his master’s degree in psychology from Hunter College in 2010.

Sally Burton-Hoyle
Dr. Sally Burton-Hoyle, sister to a person on the autism spectrum, has focused her life and career on improving the education of people with autism and other challenging behaviors. She serves as area coordinator of the Masters of Autism Spectrum Disorders program at Eastern Michigan University (EMU). This program is based on Positive Behavioral Supports and family/community involvement. Dr. Burton-Hoyle has been at EMU since 2006 and was Executive Director of the Autism Society of Michigan prior to EMU. In addition, she has classroom experience as a special education teacher. Dr. Burton-Hoyle holds a doctorate in education from the University of Idaho and a master’s degree in special education from the University of Kansas.

Matthew Carey
Dr. Matthew Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and the Autism Science Foundation blog. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. He is also interested in analyzing trends in health and education public datasets.  Dr. Carey is an active industrial researcher in computer hardware whose current research interests include magnetic thin films, spintronics, and magnetic nanostructures. He received his Ph.D. in Physics from the University of California, San Diego, and his M.S. in Physics from the University of Illinois, Urbana-Champaign.

Dennis Choi
Dr. Dennis Choi is the Executive Vice President of the Simons Foundation, the second largest funder of autism research, and he was previously a member of the Foundation’s Scientific Advisory Board. Past positions have included Vice President of Academic Health Affairs at Emory University, Executive Vice President of Neuroscience at Merck Research Labs, and professor and head of Neurology at Washington University Medical School. His research experience has included work on the physiological mechanism of action of benzodiazepine drugs and the processes responsible for nerve cell death after ischemic or traumatic insults. His research on mechanisms of brain and spinal cord injury has been recognized with several awards. Dr. Choi received his M.D. from the Harvard-MIT Health Sciences and Technology Program, as well as a Ph.D. in pharmacology and neurology residency/fellowship training from Harvard University, before joining the faculty at Stanford University School of Medicine from 1983-1991.

Jose Cordero
Dr. Cordero is the Dean of the Graduate School of Public Health at the University of Puerto Rico. Prior to this appointment, Dr. Cordero was an Assistant Surgeon General of the Public Health Service and the Founding Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. He served in this capacity from the time of the establishment of the center on April 16, 2001 until his departure in 2006. Dr. Cordero worked for 27 years at the CDC and has extensive public health experience in the fields of birth defects, developmental disabilities, and child health.  He obtained his medical degree from the University of Puerto Rico in 1973, completed residency training in pediatrics at Boston City Hospital and a fellowship in medical genetics at the Massachusetts General Hospital. In 1979, Dr. Cordero obtained a Masters of Public Health degree from Harvard University.

Jan Crandy
Ms. Jan Crandy is a case manager for the Nevada State Autism Treatment Assistance Program (ATAP) and has been a leader in raising awareness and treating autism spectrum disorders in Nevada for more than 15 years. She is a dedicated advocate and parent of a child with autism. In her current position at ATAP, Ms. Crandy manages and develops programs for more than 65 children with ASD. In 2007, Ms. Crandy was appointed to the Nevada Autism Task Force by Governor Jim Gibbons. In that role, Ms. Crandy helped develop policy recommendations for state policymakers on ways to improve the delivery and coordination of autism services in Nevada. She also serves as Chair of the Nevada Commission on Autism Spectrum Disorders. Ms. Crandy began her career in advocacy in 1996 when her daughter was diagnosed with autism. With the support of family and friends, Ms. Crandy started a nonprofit organization called Families for Early Autism Treatment (FEAT) to help parents of children with ASD in Southern Nevada.

Geraldine Dawson
Dr. Dawson is the Chief Science Officer for Autism Speaks, where she works with the scientific community and other stakeholders to shape and expand the organization’s scientific vision. In addition to her work with Autism Speaks, Dr. Dawson holds the positions of Research Professor of Psychiatry at the University of North Carolina at Chapel Hill, Adjunct Professor of Psychiatry at Columbia University, and Professor Emeritus of Psychology at University of Washington. Dawson is a licensed clinical psychologist who has published extensively on autism spectrum disorders, focusing on early detection and intervention and early patterns of brain dysfunction. In collaboration with Dr. Sally Rogers, Dawson helped to develop and empirically-validated the Early Start Denver Model, the first comprehensive early intervention program for toddlers with autism. She has collaborated on numerous studies of brain development and function and genetic risk factors in autism. From 1996-2008, Dawson was Founding Director of the University of Washington Autism Center where she directed three NIH Autism Center of Excellence Award programs of research focusing on genetics, neuroimaging, early diagnosis, and clinical trials. Dr. Dawson has served as a public member on the Interagency Autism Coordinating Committee since 2010 and has been invited to continue her service.  Dr. Dawson received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington.

David Mandell
Dr. David Mandell is a health services researcher and psychiatric epidemiologist who seeks to identify the best ways to organize, finance and deliver services to children with psychiatric and developmental disabilities. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. The goal of his current research is to improve care for children with autism and their families by developing successful interventions at the individual, provider and system levels to decrease the age at which children with autism are recognized and enter treatment, and to improve the services and supports available to them and their families.  Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science from the Johns Hopkins School of Hygiene and Public Health.

Lyn Redwood
Ms. Lyn Redwood is Co-Founder, Vice President and Board Member of Coalition for SafeMinds and Co-Founder of the National Autism Association (NAA). She became interested in autism research and advocacy when he son was diagnosed with Pervasive Developmental Disorder. Ms. Redwood served on the Department of Defense Autism Spectrum Disorder Research Program from 2007-2009 and was acknowledged for a decade of service by Spectrum Magazine as their Person of the Year in 2009. Ms. Redwood has served as a public member on the Interagency Autism Coordinating Committee since 2007 and has been invited to continue her service.  Ms. Redwood holds a Master of Science in Nursing from the University of Alabama and is a registered nurse in the state of Georgia.

Scott Michael Robertson
Mr. Scott Michael Robertson co-founded the Autistic Self Advocacy Network (ASAN) in 2006 and currently serves as ASAN’s Vice Chair of Development. Mr. Robertson, an adult on the autism spectrum, is currently a Ph.D. Candidate in information sciences and technology at Penn State University’s University Park campus. His research pursuits in the fields of disability studies, human-computer interaction, and computer supported work/learning focus on understanding and improving the lives of people with neurological and developmental disabilities. Beyond his research, Mr. Robertson has actively served the cross-disability and autism communities as a mentor, teacher, advocate, public speaker, and writer. Mr. Robertson holds a bachelor’s degree in computer science from Rensselaer Polytechnic Institute and a master’s degree in human-computer interaction from Carnegie Mellon University.

John Elder Robison
John Elder Robison is an adult on the autism spectrum who grew up in the 1960s before the Asperger diagnosis came into common use. At age sixteen, Mr. Robison left high school to join his first band as a sound engineer. Within a few years he was building equipment for Pink Floyd’s sound company, touring the hockey rinks of Canada with April Wine, and creating the signature special effects guitars for the rock band, KISS. John went on to design sound effects and other circuits for some of the most popular electronic games and toys of the era before moving into more conventional engineering management. In the late 1980s, John left electronics for a new career – cars. His company, J E Robison Service, grew to be one of the largest independent restoration and service specialists for BMW, Bentley, Jaguar, Land Rover, Mercedes, and Rolls Royce cars. Mr. Robison is an adjunct faculty member in the Department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts, speaks publicly about his experience as a person on the autism spectrum, and is the author of popular books about living life with autism, Look Me in the EyeMy Life with Asperger’s, and Be DifferentAdventures of a Free-Range Aspergian.

Alison Singer
Ms. Alison Singer is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research. The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. From 2005-2009 she served as Executive Vice President and a Member of the Board of Directors at Autism Speaks. Ms. Singer has served as a public member on the Interagency Autism Coordinating Committee since 2007 and has been invited to continue her service.  Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.

The committee is comprised of public members and federal memberes. The federal members of the committee (representatives of the federal government agencies involved in autism research and services) are expected to be announced shortly.

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