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Archive for the ‘IACC’ Category

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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The Autism Science Foundation (ASF) strongly supports the Combating Autism Reauthorization Act of 2011 (CARA) introduced today by Senator Robert Menendez (D-NJ) and Senator Mike Enzi (R-WY) in the United States Senate and by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the United States House of Representatives. 

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment.  The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC.  The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent.  This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions.  Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

The Autism Science Foundation strongly supports this new legislation and urges all members of Congress to act swiftly to pass it into law.  We thank Senator Menendez, Senator Enzi, Congressman Doyle and Congressman Smith for their continued focus on the needs of individuals with autism and their families. We look forward to continuing to work with them and the broader autism community to ensure passage of this important legislation.  At an IACC meeting earlier this year, the Obama administration pledged to support CARA and to sign the bill into law upon passage.

The Autism Science Foundation is 501(c)3 public charity. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization 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.

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The Interagency Autism Coordinating Committee and Office of Autism Research Coordination released and posted the 2010 IACC Summary of Advances in Autism Spectrum Disorder Research  today in conjunction with Department of Health and Human Services celebration of “National Autism Awareness Month”  and the United Nations designated “World Autism Awareness Day” on April 2, 2011.  The 2010 IACC Summary of Advances is a collection of brief summaries covering the twenty research findings and associated publications that the IACC felt made the most significant contributions to autism biomedical and services research in 2010.

IACC and Department of Health and Human Services information:

  • Release of the Department of Health and Human Services’ Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006
  • Upcoming IACC Full Committee Meeting on April 11, 2011, featuring special presentations in recognition of National Autism Awareness Month


Additional Autism Awareness information:


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Dr. Alan Guttmacher and Dr. Alice Kau

On July 22, Dr. Alan Guttmacher was named Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). This interview with Dr. Guttmacher and Dr. Alice Kau.  Extramural Program Staff Officer for the Intellectual and Developmental Disabilities (IDD) branch of NICHD was conducted by Autism Science Foundation intern Emily Hotez, a senior at George Washington University.

 

How does autism research play into the major goals of NICHD?

A.G. For many years we were simply the National Institute of Child Health and Human Development (NICHD). The reason Eunice Kennedy’s name was added is that she was instrumental in working with her brother, then President Kennedy, to found an institute at the NIH that was particularly focused on the health and well being of people with intellectual and developmental disabilities. Historically, it is at the very core of the mission of our institute to support research, in terms of understanding various kinds of intellectual and developmental disabilities, and also in terms of improving the lives of the people who have those kinds of conditions. We know much more about autism than we did back when the institute was founded, now almost 50 years ago, and it is a significant part of intellectual and developmental disabilities. Autism research is very important to us, but we are certainly not the only institute at NIH for whom it is important. Particularly, the National Institute of Mental Health is also in the vanguard of NIH work on autism. We work closely with them, along with National Institute of Deafness and other Communication Disorders National Institute of Neurological Disorders and Stroke, the National Institute of Environmental Health Sciences, the National Institute of Nursing Research, and the National Center for Complementary and Alternative Medicine, all of which support autism research.

NICHD has an autism conference coming up focused on improving diagnosis across different populations.  In what ways will this conference benefit autism research at NICHD?

 A.G. I think it has been apparent for some time that there are particular challenges in diagnosis and interventions for folks with autism in special populations, for example, those who do not have access to good medical care. Also, people who come from minority populations have even more challenges, for various reasons, than do others who have autism. The idea of this conference is to look at some of these extra challenges, to look at the ways that research can move forward our understanding of them, to overcome some of those challenges, and to even remove some of them.

 A.K. As you know, autism is diagnosed behaviorally, so it could be influenced by culture and the perception of the parents, and even the language we use. NIH program staff wanted to hold the conference to get the sense of what we know so far and what we need to do to bring the disparities down.

 How has the focus of autism research in general evolved at NICHD since you have come to be acting director?

 A.G. Well, I have only been acting director for 7 months so I don’t think it’s changed a whole lot since then. In some ways the focus is that we really try to coordinate with the other institutes in how we do the NIH’s research involving autism. We have the NIH Autism Coordinating Committee, which helps to coordinate research among the various institutes and centers, and also program staff such as Alice work closely across the institutes to try to do that. I don’t think an emphasis has really changed since I’ve been here, but I think I have tried to encourage working with the other institutes to make sure that we are doing things that coordinate in a productive fashion. We are not worried about who gets particular credit for a particular finding, but that we really identify the scientific questions that we can be answering through research.

 A.K. We are in the middle of our funding for the Autism Centers of Excellence. Dr. Guttmacher came into the Institute when the initiative was really in high gear. We are into the second and third years of funding. There are autism research centers and autism research networks and we also work with the autism communities.

 A.G. We coordinate not only within NIH but we also try to coordinate with the wider world, both in terms of various advocacy organizations and also in terms of working very closely with extramural scientists that we support. We really see this as a multiple player partnership and we try to play our role in that.

 A.K. The advocacy groups are funding a substantial amount of autism research so it is very important that we coordinate with each other to avoid overlaps.

 A.G. We have had specific conversations with some groups looking at various kinds of research and initiatives. We are constantly having new conversations and we have had some new ones about a public-private partnership. There are some things that obviously government agencies with funding can do best, but there are also things nongovernmental groups can do best. In general, the best situation is when both get together so we are not worrying about who gets the credit but how we can move our understanding forward.

 Your predecessor, Dr. Duane Alexander, suggested that that a smaller part of the population could have a genetic variation that predisposed them, after vaccine exposure, to ASD. Can you elaborate on this idea?

 A.G. I don’t know that we have an official agency view of that, although my own view is that the research we have so far has shown no convincing tie between immunization and autism. If there are new reasons to pursue that, we should, but at this point we know there are environmental factors (we use the term “environmental” quite broadly) that have to do with autism. We also know that there are genetic and other biological factors that have to do with it. We haven’t identified all of them, so it is hard to prove if something is not involved, but there is no evidence at this point whatsoever that vaccination plays a role. We have seen the agent in vaccines that many people thought might have a role pulled out of vaccines, yet we haven’t seen any decline in the incidence of autism. If anything, we have seen an increase in the incidence of autism, so that, again, would be even more evidence to suggest that vaccination does not play a role.

 A.K. The NIH with NIAID’s leadership has an open program announcement to support research that will contribute to the overall understanding of vaccine safety in general, not just in relation to autism. NIH is open to good ideas, good proposals and research of vaccine safety in general. NIH as a whole is always welcoming good ideas and good opportunities.

 In a New York Times interview with you in April, you were quoted saying “many of the different types of autism are either genetic or triggered by environmental factors and a genetic predisposition”. This implies that environmental factors in isolation cannot cause autism. Can you elaborate on this?

 A.G. I don’t think we know for sure whether they can. I think that, when I say purely genetic, we know that there are certain inherited conditions, such as Fragile X syndrome, in which we see a high frequency of autism. Of course, not everyone with Fragile X has autism- but many people do. So even there, the environment might play a role in modifying the effect of the Fragile X gene, so that someone with Fragile X also develops autism.  Most things in health are a combination of genes and environment but whether everything is, is still an open question. Is it conceivable that there is some environmental trigger that can cause autism no matter what the biology of the individual? It is conceivable but my guess is it would be exceedingly rare if it exists, and in the vast majority of people with autism, it would be a combination of their individual genetic makeup and various kinds of environmental exposures and influences. Whether that turns out to be everybody or just the vast majority, I don’t think we have enough knowledge to really know yet.

 A.K. It is a complex genetic interplay. It is typically not a single gene; it is how the genes interact.

 A.G. Particularly when you look at the environment, it may be that exposure to “factor A” is important in terms of causing autism. My guess is there could be certain genetic variants, which are somewhat protective. Even if they are exposed to a fair bit of whatever it was, they seem to be immune to it, whereas there are other genetic variants that may make one more sensitive. So even if we removed that environmental cause and that portion of autism disappeared, it would still be the environmental- genetic interaction.

 In the previously mentioned New York Times interview, you said, “the jury was still out” as to whether autism is actually increasing or if we are becoming better at recognizing it. How would the answer to this question improve our knowledge on autism, if at all? What kind of research has NICHD recently done on this subject, if any?

 A.G. I think it is very clear that our ability to recognize autism across the autism spectrum is much better than it used to be, so there is no question that some of the increase in what we see in the rate of incidence and prevalence of autism is clearly because of better diagnosis, and I imagine we are going to continue to see better diagnosis. We still don’t have perfect diagnosis; so as that gets better and better we may continue to see some rise in incidence. Whether or not there is an increase for other reasons, I don’t think we know for sure. Designing studies to find out would be very difficult, because ideally you would need to go back in time and you cannot go back in time very effectively. It would be important because if we did for sure say there was increase in incidence, that would be some suggestion that there is some environmental influence that is increasing, because we know genes do not change very quickly across our species. If we are seeing an increase over several centuries, that could be because of variance in genes changing in frequency. However, if you see an increase over a few decades, that would suggest there is some environmental factor or very possibly factors that for some reason we are having more exposure to, and that they are responsible. It would be useful data because this would help us figure out exactly what are the environmental triggers for autism.

 On the NICHD website you are quoted saying “I truly believe that, for children born today, knowing their genomics will have a significant impact on their health into adulthood.  Possibly in ways we have yet to imagine.” Can you describe how the progress NICHD has made on mapping the human genome can contribute to what we know about autism and how this will have an impact on individuals with autism?

 A.G. Having the human genome sequence in hand, which we have basically had since 2003, is very helpful if we are going to understand if all autism is due to some interaction between various genetic factors and various environmental factors. Now that we know much more about our genomic makeup, we know much more about variation, both from the sequencing of the genome that was done back in 2003 and since then, improving our understanding of the role of copy number variants in the genome, which is something we have only known about in the past few years. In autism, there is a suggestion that copy number variants could be one of those genetic variations that is important to understanding autism. Our knowledge of the genome continues to unfold and get more sophisticated, and we are coming to understand epigenetic phenomenon. Those kinds of things will be very important in terms of finally beginning to understand what are the specific causes of autism. The great news is we are beginning to acquire those genomic tools. The bad news is we are still early in that age. We are still developing some of those tools but it is a very promising area in the near future

 Can genomics provide not only insight into the biological basis for autism, but also insight into how individuals with autism may respond to certain treatments or medications?

 A.G. Absolutely, very good question. Certainly in terms of medications, whether we are talking about medications for autism or any other condition, if you give somebody a medicine, it has 1 of 3 effects. The medication either has the desired, therapeutic effect, it has no effect, or it has a toxic side effect. Sometimes, it may have the desired effect and the toxic effect. And why is that variation? It is for lots of reasons but a lot of it has to do with how a body metabolizes the drug once we take it.  What determines how we metabolize drugs or enzymes we have in our body (enzymes are nothing more than proteins that are coded by genes) is that we have genetic variants. There is no reason to think drugs we use for autism would be very much different from all other drugs. It is also possible that for some of the nonmedical treatments that are used today or will be in the future for autism, genes could play a role. There are probably genetic variants that we very well don’t much understand today that affect how responsive one is. Someday, and that day is still far away, we may use one’s genetic makeup, or their genome, to help individualize the various kinds of therapies we use, particularly medical therapies but even non-medical therapies and interventions that may give us some guide. A lot of other things will help guide too but that is one of the pieces of information that will someday be helpful.

 My younger sister has PDD-NOS and this has allowed me to truly understand some of the difficulties that exist in families of individuals with autism. It has also helped me to understand the struggles that these individuals have in society as a whole. What are some specific ways in which identifying genetic markers in autism can help individuals with autism and their families? What kind of social impact can this bring about?

 A.G. Well this is a good question, a very complicated one in some ways. Obviously if we can understand genetic factors that are largely but not only inherited and how genetic factors play a role in autism, families can get a better understanding of what are the inherited factors in their families and could change one’s risk for developing autism. Eventually the hope would be that by understanding genetic mechanisms involved, we can both guide most folks with autism more accurately and earlier in their lives but also, really tailor therapies, whether they be medical or other, specifically for who they are as individuals. For many diseases or conditions, not just true of autism, but conditions like asthma, etc., we treat them like they are one disorder. Biologically, whether it’s asthma or autism, we are probably talking about a number of different conditions, which simply have the same symptoms. We historically tend to label conditions by symptoms, rather than by cause, but if you want to treat something and prevent it from getting worse, you really want to understand the biology. If you try to treat the symptom you won’t be as effective as if you treat the underlying biological causation. Our hope is that genetics and other kinds of scientific advances will give us a more sophisticated view of autism so we can begin to tease out autism. Right now we have identified autism primarily by where on the spectrum someone fits. That can be very useful obviously, but even more useful in some ways would be not just where on the spectrum and what are the effects, but what are the actual causes involved. Someone who has autism for one biological reason may respond very differently to a given therapy than someone who has autism from a completely different biological basis, but simply has the same behaviors.

 Can you elaborate on the progress that has been made at the NICHD’s “Brain and Tissue Bank for Developmental Disabilities” in regards to autism research?

 A.K. The bank was reconvened last year. We are in a new phase of the banking contract for NICHD. One thing that we are very interested in is developing a protocol for post- mortem diagnosis for autism. It is challenging to diagnose someone with autism when the person is alive, let alone to do so when the person is gone. It is very important we devise a systematic way of doing this so that all of the brains recruited from the various banks, nationally or internationally, will undergo the same diagnostic procedures so we can compare them accurately. We continue to engage the community and listen and work with various organizations outside of NIH and within NIH.  The challenge is great, and it can be overwhelming, but we want to take all of the little steps we can take and eventually reach the final goal of having as many brains available with good tissue quality, and good clinical phenotyping for researchers to use.

 A.G. There has been a lot of progress with this and we have been having conversations with a number of various interested parties about how we can leverage the resources that we have in the NICHD Brain and Tissue Bank and about how we can leverage that with other efforts to try to create a richer resource that will be of even more use to the research community. That is one of those things that we try to leverage what we are doing by working with others to have even more impact. We are pretty optimistic that we can figure out how exactly we can do that in the not too distant future.

 What are some of the other developments in autism research that NICHD has been working on since you were appointed as acting director? What is the current status on these projects and what do you hope will come of them in the future?

 A.K. We are working with NIMH and NIDCD on a project focusing on nonverbal, or non-speaking, individuals with autism. The NIH with NIDCD’s leadership recently held a workshop on nonverbal school-aged children with autism. I think we at NIH all agree that this is a population, a subgroup, which has not been given enough attention. We are looking into a number of research gaps and opportunities to see how we can better diagnose and treat. So that is one effort that NIH as a whole is working on.

  As a geneticist, what do the complexities of autism research mean to you?

 A.G. I am not sure if I answer that primarily as a geneticist or primarily as a pediatrician or primarily as a human being. Genetics is one tool, and an important one, but not the only one. It is just one of the newer ones we have to try to figure out what is the cause of this condition so that we can give people information they can use to improve the lives of people who have autism.  I think it is a very promising era. I understand fully the frustration of families who have members with autism. At the same time, this is an era with a real promise that we will see a fairly steep increase in our level of understanding and knowledge and that can really make a difference and have an impact on the lives of individuals with autism. I haven’t had family members with autism but I have certainly had both friends and patients with autism and I have some sense of what that means for peoples’ lives. I think the reason why most of us who work at NIH work here, is the fact that we get to go to work and do something that we think can improve people’s lives. We are pretty optimistic that a lot of the work we are going to be doing will do that. One of the contexts that I always keep in mind is that a doctor named Leo Kanner first described autism in 1943. Leo Kanner happened to be the guy who introduced my parents to each other. When I was a child I used to go over and visit him. My mother came to the United States from Argentina to work with Leo Kanner, so I knew him as a little kid. It is not the reason for doing this but it does give me a certain particular excitement or delight or something to think he would have been very happy to have me–who wouldn’t exist if he hadn’t introduced my parents to each other– play a role in advancing understanding of a condition he was the first to recognize. I think I’m moved more by this connection than by specific individuals with autism that I know fairly well.  Of course, I don’t mean to discount the experiences of individuals with autism and their families and I’m sure your life has probably been shaped by your sister’s existence. However, Dr. Kanner’s descriptive work and his role in forming my own family is something that continues to move me in terms of why we need to continue to get this work done.

 Can you describe some of NICHD’s short and long-term goals for autism research?

 A.G. I cannot really single out one, although we haven’t really talked about the cognitive process which is so variable in individuals with autism. The goal is getting a better understanding of what are the factors that are responsible for both cognitive and behavioral features of autism. This is obviously going to be very important to understand more fully if we are going to find ways to benefit the lives of people with autism. That is not going to come easily but there is no reason to think we can’t do it eventually with research and can’t understand it much better than we do today.

 A.K. The challenge is so great. Addressing the biology of autism’s causes will help us to really interpret the picture better.

 A.G. Some of the new imaging techniques will also allow us to look at brain function in people with autism and allow us to separate it out into various different types. Maybe there will be some correlations between one genetic factor and one kind of brain imaging finding. Maybe it won’t be linked, but it can help us really figure out the different strands that make up the tapestry of autism.

 Emily Hotez is an intern with the Autism Science Foundation. She is a senior at the George Washington University, working towards a major in psychology with a concentration in developmental psychology and a minor in Spanish. Her 17 year old sister Rachel has Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and continues to inspire her interest in autism spectrum disorders. Emily is currently working towards applying to Ph.D. programs in clinical/community psychology.

 

This interview was conducted on July 20, 2010.

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Health and Human Services Secretary Kathleen Sebelius has announced the appointment of five new public members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee created in an effort to accelerate progress in autism spectrum disorder (ASD) research and services.

The committee is composed of a diverse group of federal officials from HHS agencies and the Department of Education, as well as public members that include people with ASD, parents of people with ASD, and leaders of national ASD advocacy and research organizations.  Autism Science Foundation co-founder and president Alison Singer serves as a public member on the IACC.

In January 2009, the IACC released its first strategic plan for autism research. The IACC released a second edition of its strategic plan in January 2010.

“Today I am pleased to announce new members of the IACC, who will bring additional points of view and expertise to the committee,” Secretary Sebelius said. “I look forward to hearing from the committee members on important matters that affect people with autism and their families as we continue our efforts to address this urgent public health challenge.”

ASDs are a group of developmental disabilities that cause major social, communication and behavioral challenges with symptoms that present before age 3. ASDs affect each person in different ways and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. The Centers for Disease Control and Prevention estimates that an average of 1 in every 110 children in the United States has some form of ASD. 

For more information on the IACC, visit http://www.iacc.hhs.gov/.  The full committee roster is available here.

New Public Members of the Interagency Autism Coordinating Committee

Geraldine Dawson, Ph.D.
As chief science officer for Autism Speaks, Dr. Dawson works with the scientific community and stakeholders to shape and expand the foundation’s scientific vision. She also is a licensed clinical psychologist with a research focus on early detection and intervention, early patterns of brain dysfunction and the identification of biological markers for autism genetic studies. Dr. Dawson also serves as 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.

Gerald D. Fischbach, M.D.
Dr. Fischbach is the scientific director for the Simons Foundation where he oversees the Autism Research Initiative. He has spent his career as a neuroscientist studying the formation and maintenance of synapses, the junctions between nerve cells which allow signals to be transmitted. Before joining the Simons Foundation, Dr. Fischbach served as the Director of the National Institute of Neurological Disorders and Stroke from 1998 to 2001 and as the Executive Vice President of Columbia University Medical Center and Dean of the faculties of medicine from 2001 to 2006.

Ari Ne’eman
Mr. Ari Ne’eman is the founding president of the Autistic Self Advocacy Network, where he works to increase the representation of autistic people in public policy discussions. He is an adult on the autism spectrum and a leading advocate in the neurodiversity movement. Mr. Ne’eman has served on the New Jersey Adults with Autism Task Force and the New Jersey Special Education Review Commission, where he authored a minority report advocating legislative action against the use of aversives, restraint and seclusion. He is a board member of TASH, an advocacy group for people with disabilities, and is involved with the Maryland Coalition for Inclusive Education.

Denise D. Resnik
Denise Resnik is the co-founder and board development chair of the Southwest Autism Research & Resource Center (SARRC). She is the mother of an 18-year-old son with autism. Ms. Resnik serves on the Autism Speaks Family Services Committee and Advancing Futures for Adults with Autism (AFAA) Steering Committee. She participated in the 2006 NIMH Autism Matrix Review and the IACC Scientific Workshops to develop the IACC Strategic Plan and subsequent updates.

Marjorie Solomon, Ph.D.
Assistant professor of Clinical Psychiatry at the University of California, Davis

Dr. Marjorie Solomon is an Assistant Professor of Clinical Psychiatry in the Department of Psychiatry and Behavioral Sciences at the University of California, Davis. She serves on the Faculty of the Medical Investigation of Neurological Disorders (MIND) Institute and the Autism Research Training Program where she conducts research on a social skills training intervention for high-functioning children with ASD, incorporating parents and siblings in the research. In addition to her clinical research work, Dr. Solomon studies cognition and learning in high-functioning individuals with ASD.

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The Interagency Autism Coordinating Committee and Office of Autism Research Coordination are pleased to announce that the 2009 IACC Summary of Advances in Autism Spectrum Disorder Research was released and posted to the IACC website today in conjunction with the United Nations designated “World Autism Awareness Day” and the Department of Health and Human Services celebration of “National Autism Awareness Month.”  The 2009 IACC Summary of Advances is a collection of brief summaries of the twenty research articles that the IACC felt made the most significant contributions to autism biomedical and services research in 2009.

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Autism Science Foundation President and Interagency Autism Coordinating Committee (IACC) member Alison Singer joined all her colleagues on the IACC this week in voting to approve the 2010 Strategic Plan for Autism Research.

The plan calls for upwards of $217 million to be devoted to autism research in 2010. It includes new objectives for identification of behavioral & biological markers, and calls for new studies to improve understanding of the biological pathways of genetic conditions related to autism; studies that target the underlying biological mechanisms that co-occur with autism; and studies that investigate what causes phenotypic variation across individuals who share an identified genetic variant. The new plan cites the need for more research on services and supports, as well as a greater focus on lifespan issues. The committee also added a new chapter to the plan calling for infrastructure investments that will support data sharing among researchers, encourage and enable individuals with ASD and their families to participate in research, and improve the speed with which research findings are disseminated.  The new chapter also calls for enhancing and expanding autism surveillance efforts.

The plan does not include any references or objectives that imply that vaccines cause autism, and it does not call for additional vaccine research.  “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer.

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