A summary of the CDC autism prevalence report

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.

HHS Secretary Sebelius Appoints New IACC Members; ASF president Alison Singer reappointed

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 Eye, My Life with Asperger’s, and Be Different, Adventures 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.

1 in 88 Diagnosed with ASD, CDC Reports (1 in 54 Boys)

From Autism Science Foundation

(March 29, 2012—New York)  The Centers for Disease Control in Atlanta today reported that 1 in 88 children were diagnosed with an autism spectrum disorder (ASD) in 2008.  That’s a 23% increase from 2006 when the prevalence rate was 1 in 110.  Autism spectrum disorders are almost five times more common among boys than girls – with 1 in 54 boys identified.

“One thing the data tells us with certainty – there are many children and families who need help,” CDC Director Thomas Frieden, M.D., M.P.H said in a press release. “We must continue to track autism spectrum disorders because this is the information communities need to guide improvements in services to help children.”  On a noontime call with media and advocates, Dr. Frieden added “Doctors are getting better at diagnosing autism. It’s possible that the increase is entirely the result of better detection.”

The identified prevalence of ASDs in U.S. children aged 8 years was estimated through a retrospective review of records in multiple sites participating in the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. Data were collected from existing records in 14 ADDM Network sites (Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin) for 2008.  Children aged 8 years met the case definition for an ASD if their records documented behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision (DSM-IV-TR) criteria for autistic disorder, pervasive developmental disorder–not otherwise specified (PDD NOS), or Asperger disorder. Presence of an identified ASD was determined through a review of data abstracted from developmental evaluation records by trained clinician reviewers.

“These are not just numbers, these are real people with real needs” said Alison Singer, president of the Autism Science Foundation.  “These are families that are exploding.  We have to focus on building the infrastructure to provide education and services to all of these people and their families. And we have to focus on what is fueling the increase in prevalence, and that means investing in research.  We have learned so much about autism’s genetic 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.”

“We need to accelerate research into causes” said Dr. Coleen Boyle, Director of the CDC’s Center for Birth Defects and Developmental Disabilities.  “Tracking helps identify potential risk factors. Because of tracking we now know more about how advanced parental age and premature birth confer increased risk for autism.”

Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior. ASDs typically are apparent before age 3 years and sometimes can be diagnosed as early as 14 months, with associated impairments affecting multiple areas of a person’s life. Because no biologic marker exists for ASDs, identification is made by professionals who evaluate a child’s developmental progress to identify the presence of developmental disorders.

Learn more at www.autismsciencefoundation.org.  646-723-3976

Read the full report from CDC  http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_e

CDC has also issued a Community Report  that gives detail by site and has a useful FAQ section.

 

 

 

30 Days of Action for Autism Awareness Month

Awareness of autism is no longer enough. We need to take action everyday in April. Click here to get a full size version of the  calender of to dos to take action for autism.

Follow all of ASF’s Autism Action Month Activities on Pinterest here where we’ll be pinning the to dos daily.

Newly Published Genetics/Brain Tissue Study Will Help Refine the Search for Specific Early Genetic Markers of Risk of Autism in Babies and Toddlers

By Dr. Eric Courchesne

A new study of autism published today in PLoS Genetics (Age Dependent Brain Gene Expression and Copy Number Anomalies in Autism Suggest Distinct Pathological Processes at Young Versus Mature Age) has discovered abnormal gene activity and gene deletions in the same brain region that also has a 67% overabundance of brain cells.  This region – the prefrontal cortex—is involved in social, emotional, communication and language skills. The finding brings new understanding of what early genetic abnormalities lead to excess brain cells and to the abnormal brain wiring that cause core symptoms in autism. Importantly, the study also shows that gene activity abnormalities in autism change across the lifespan.

The research is one of the first to focus on gene activity inside the young autistic brain, and is the first to examine how gene expression activity changes across the lifespan in autism.  It is also one of the largest postmortem studies of autism to date. This close-up look inside the brain uncovered the presence of abnormal levels of activity in genes (“gene expression”) and gene defects (deletions of portions of DNA sequences) that control the number of brain cells and their growth and pattern of organization in the developing prefrontal cortex. The abnormal gene activity occurred in several networks that are important during prenatal brain development (cell cycle, neurogenesis, DNA damage detection and response, apoptosis and survival networks). This seems to rule out a number of current speculations about postnatal causes of autism and, combined with the new evidence of a 67% excess of prefrontal brain cells, points instead to prenatal causal events in a majority of cases.

The study’s direct examination of both mRNA and DNA from the same frontal cortex region in each individual is also a unique approach to discovering the genetics of abnormal brain development in autism.  The combined mRNA and DNA results indicate that a large and heterogeneous array of gene and gene expression defects disrupt prenatal processes that are critical to early prefrontal cortex formation. “Although DNA defects vary from autistic case to case, the diverse genetic deletions seem to underlie a relatively common biological theme, hitting a shared set of gene pathways that impact cell cycle, DNA damage detection and repair, migration, neural patterning and cell differentiation,” according to the study.  Importantly, the set of functional gene pathways identified by the study’s direct analyses of autistic brain tissue are consistent with those identified by previous studies that analyzed copy number variations in living autistic patients.

A second major discovery in this study is that the pattern of abnormal gene activity changes across the lifespan in autism. Thus, in adults with autism, the study found abnormal activity in genes involved in remodeling, repair, immune response and signaling. This raises opportunities for new research directions that ask whether and how such later alterations in genetic activity impact brain structure and function.  A hope is that perhaps this later, second stage of unusual genetic activity we detected in adults with autism has something to do with enhancing adaptive connections and pruning back earlier maladaptive connections.  Further research needs to better understand the impact of those later changes in genetic activity.

Findings in the new study will help refine the search for specific early genetic markers of risk of autism in babies and toddlers.  Next steps include identifying what causes the altered genetic activity at early stages of development, when nerve cells in prefrontal cortex arise and the first steps in creating brain circuitry are being taken.  Knowledge of these specific patterns of abnormal gene activity may also give rise to future studies that search for medical interventions that target abnormal gene activity in an age-specific fashion.

Announcing our 2012 IMFAR Travel Grant Recipients

IMFAR Stakeholder Travel Awards Will Support Parents, Siblings, Individuals with Autism & Graduate Students

We are delighted to announce the recipients of the 2012 IMFAR Travel Grants.   ASF will make 12 awards to autism stakeholders to cover expenses related to attending the International Meeting for Autism Research (IMFAR) in Toronto, Canada in May 2012. After the conference, grant recipients will share what they have learned with families in their local communities or online.

This year’s recipients are:

• Catherine Blackwell – Sibling
• Debra Dunn – Parent, Center for Autism Research at CHOP
• Eric Hogan – Self Identified Individual with Autism
• Eshan Hoque – PhD Candidate, MIT
• Kadi Lichsinger – Parent
• Marjorie Madfis – Parent
• Jon Shestack – Parent, Founder of Cure Autism Now
• Mark Shen – PhD Candidate, UC Davis MIND Institute
• Melissa Shimek – Self Identified Individual with Autism
• Meghan Swanson – PhD Candidate, Hunter College/City University of New York (CUNY)
• Meagan Thompson – PhD Candidate, Boston University
• Emily Willingham – Parent , Thinking Person’s Guide to Autism Blog

IMFAR is an annual scientific meeting, convened each spring, to share 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 delighted to bring so many autism stakeholders to IMFAR so they can share their real world  experience with scientists,” said Alison Singer, President of the Autism Science Foundation. “Our travel grant program has become more and more popular over the past three years and we are thrilled to be able to increase the number of awards offered this year.”

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

Send a Special Thank You to Your Favorite Doctor!

Doctors care for us in our time of need. They work nights, weekends and holidays. They spend years preparing for careers of service and healing. Their focus is on you and your family.

Say “thank you” to the remarkable doctors in your life and show them how much you value their commitment to your family’s good health. Make a donation in their honor on National Doctors’ Day to express your gratitude.

The Overly Active Autism Brain

Photo credit: pawpaw67

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.

Over the course of my autistic son Jared’s life, he has gone through sleep difficulties, from the earliest weeks when most babies were sleeping 6 hours in a row, up to the present.  Sure, there have been months, or even a few blessed years, when he has been able to sleep 6 ½-8 hours in a row but more often than not Jared’s sleep has been in bursts of 4-hour cycles.  This has led to him having behavioral problems and to his parents and siblings not getting much rest.

When Jared was a baby, my husband and I were fortunate enough to work in an EEG lab while getting our Psychology degrees at UCLA.  Since my husband is an EEG researcher and with guidance from his university advisors, we decided to record Jared’s EEG at 4 months of age to see if we could find out why our baby wasn’t sleeping.  What we discovered is that our son, at 4 months old, had more brainwave activity as compared to others.  We felt this meant that his brain was more activated, even while sleeping.

A recent study utilizing EEG in infants seems to support our early findings with our own son, although this one focused on attentional differences in social situations as opposed to simple brainwave activity differences while sleeping.

Researchers at Birbeck, University of London placed electrodes on the scalps of 6-10 month-old infants to measure their brainwave activity as they watched faces that either looked at them or away.  Since humans have certain characteristic brainwave patterns during social eye contact the researchers were trying to see if infants who later on are diagnosed with autism show a different brainwave pattern in infancy.  If this is so then the measurements can be used as an earlier indicator of autism or the tendency towards autism and it can give parents a head start on intervention.  Results indicated that as early as 6-10 months infants who go on to develop autism already show different brainwave activity as compared to children who do not.  Specifically, the infants who do develop autism process social information differently.  It is important to note that not all infants who showed this pattern developed autism so the research will need to be expanded.

As I write this post, Jared, now 14, is in the hospital for behavioral problems associated with entering puberty last year.  It has been 3 weeks now and the doctors still cannot find a way to help him sleep through the night, or sleep much at all, as it turns out.  I am hopeful that as research continues there will be applicable treatments so that individuals struggling with autism’s challenges can get relief.  I just wish it were sooner rather than later because I really miss my son.

Source: Birkbeck, University of London (2012, January 26). In the brain, signs of autism as early as 6 months old. ScienceDaily. Retrieved March 13, 2012, from http://www.sciencedaily.com­ /releases/2012/01/120126123703.htm