This past December, The Shops at Prudential Center launched “31 Nights of Light,” a new Boston holiday tradition, partnering with 28 Boston-area organizations to light the top of the Tower a different color each night in December.
Monday, December 21 featured Autism Speaks and its signature blue awareness color. At 5:00 p.m., a seven-foot switch was honorarily “flipped” by Dennis Floyd and his son, Grant, from Lynn, Mass. Actually, five-year-old Grant muscled the huge light switch up and on, lighting the 51st floor of the Prudential Tower in Autism Speaks blue. The Floyds were one of many donors who, for a donation of $25 or more between December 9 and December 16, were entered into a drawing to win this special honor.
On the Release of the GI Consensus Statement and Recommendations in Pediatrics: The ATN’s role in Moving from Consensus to Evidence
The release today of the consensus statements and recommendations for the evaluation, diagnosis and treatment of gastrointestinal (GI) disorders in Pediatrics provides much needed guidance to clinicians and practitioners involved in the care of children with autism spectrum disorders (ASD) in the recognition, evaluation, and management of abdominal pain, chronic diarrhea, chronic constipation and gastroesophageal reflux disease. Given the difficulties some children with ASD experience in communicating pain or discomfort, these recommendations mark an important step to understand and characterize the manifestation of gastrointestinal complaints in these children. They also serve to bring order to the diagnostic and treatment procedures for parents and physicians. While the expert recommendations break new ground, we anticipate that they are a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD.
Several of the authors on these two papers, including myself, are pediatric gastroenterologists as well as active members of the GI Committee of Autism Speaks’ Autism Treatment Network (ATN). Through the ATN GI Committee and the federally-sponsored Autism Intervention Research Network on Physical Health (AIR-P), the ATN is turning consensus-based recommendations into ASD-specific clinical evaluation and treatment algorithms. These will be based on data (where it exists) and guidelines for pediatric GI conditions for neurotypical children that we modify for children with ASD, supplemented by expert opinion that supports the effectiveness of the recommended procedures.
The ATN is working closely with the National Initiative for Children’s Healthcare Quality (NICHQ) (http://www.nichq.org/), an organization recognized as expert in pediatric guideline development. Together, we are in progress of piloting of the first developed algorithm which is for the evaluation and treatment of constipation at several ATN member sites. The data we collect from this pilot work and subsequent broad implementation across ATN sites will eventually contribute to the development of evidence-based guidelines. The ATN is a highly unique resource in this effort, in part because of the ATN Registry which collects and analyzes data on over 1700 ATN children with ASD.
The eventual development of ASD-specific evaluation and treatment algorithms for GI disorders and other conditions that trouble children with ASD means that physicians and other care providers who use these algorithms will have greater clarity on the diagnosis, evaluation and treatment of these conditions. For families, these algorithms will provide confidence that a chosen course of action is based on careful testing in clinical practice and greatly increase the likelihood of successful identification and management of their children.
For the time being and until the availability of the ATN evaluation and treatment algorithms, parents are urged to let their children’s doctors know about the release of the important consensus statements and recommendations on-line in Pediatrics so that that they might be applied to their child’s care.
George J. Fuchs, M.D.Dr Fuchs is Professor of Pediatrics, University of Arkansas for Medical Sciences and Medical Director, Gastroenterology, Arkansas Children’s Hospital. He is a member of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, (NASPGHAN), and is the Chair of the Gastroenterology Committee of the Autism Treatment Network.
This part 1 of a 2 part series is from Michael Rosanoff and Andy Shih who both work in the Autism Speaks science department. The first post is from Michael Rosanoff. Both guest bloggers bios are below the post.
It’s been just over a week but by now most of us have heard that the new autism statistics are out and no less frightening – 1 percent. So the question on everyone’s mind is what is causing this astounding increase in prevalence? Fortunately, in addition to measuring how prevalent autism is in a population, epidemiology can help piece together the rest of the puzzle by examining what is causing autism to be so prevalent. Part of the approach is to tease out some of the “non-casual” factors contributing to the increase over time such as changes in how autism is diagnosed and increasing awareness. While we can’t yet see the full picture, recent research from the U.S. and around the world is showing us that while these factors are clearly playing a role in the rise in autism prevalence, they cannot account for the dramatic increase alone. Epidemiology research can shed light on some of the genetic and environmental factors driving this rise in prevalence, and once we uncover the causes or risk-factors, we can more effectively develop ways to manage this growing problem.
Currently, Autism Speaks is supporting and advising on a number of large-scale epidemiology studies in the U.S. that look at environmental factors potentially contributing to the rise in autism prevalence. These include the EARLI Study, CHARGE, and the National Children’s Study. In addition, international epidemiology research has been an area of major focus for Autism Speaks. In 2004, Autism Speaks and the CDC (in fact, the authors of the latest prevalence study) co-developed the International Autism Epidemiology Network to promote collaboration and facilitate research among autism epidemiologists worldwide. Today, the network includes over 100 scientists from more than 30 countries.
International research presents unique opportunities to understand the etiology, or causes, of autism by studying different ethnic groups in countries with different environmental conditions than found in the U.S. alone. Epidemiologists can make comparisons of autism prevalence across nations as a means of generating clues about the involvement of genes or environmental exposures. Additionally, some nations have special resources, such as health registries and surveillance systems that can generate large datasets and make previously impossible studies on autism possible. Autism Speaks is currently supporting the iCARE project which combines data from Norway, Sweden, Denmark, Finland, Israel, and Australia to investigate pre- and peri-natal risk factors for autism.
So what we have now is mounting evidence that autism is a major public health issue and epidemiologists have the tools to investigate why autism is more prevalent now than ever before. The question remaining is what are we going to do about it? How are we going to enable the necessary research? Autism Speaks is answering the call through our supported research efforts, but our efforts alone are simply not enough to help the 1 percent of the U.S. and possibly global population affected by autism. We need answers and with more support, research will provide the answers families need.
Andy Shih, Ph.D., Vice President of Scientific Affairs at Autism Speaks
Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.
Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.
Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.
Michael Rosanoff, Assistant Director of Public Health Research and Scientific Review
Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.
Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (M.P.H.) in epidemiology from Columbia University’s Mailman School of Public Health and currently resides in Jersey City, N.J.