NEW YORK, N.Y. (January 4, 2010) — Autism Speaks applauds the consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal (GI) disorders in children with autism spectrum disorders (ASD) released online in Pediatrics as one step in advancing physician awareness of unique challenges in the medical management of children with autism. “We are pleased to see the publication of these consensus recommendations. Autism Speaks’ current efforts will take this further by creating evidence-based guidelines for physicians. The goal is to develop a comprehensive care model that will guide physicians in addressing a wide range of medical issues, including GI problems, that many individuals with autism suffer from, “commented Geraldine Dawson, Ph.D., Autism Speaks chief science officer.
The two reports published today present outcomes of a meeting held in May 2008, sponsored by the Autism Forum, in which working groups participating in the meeting reviewed current evidence on the evaluation and treatment of GI disorders specifically for children with autism. The 2008 meeting from which these consensus recommendations were derived recognized that health care practitioners severely lack solid information to guide care of children with autism and GI problems and there is a need for more research data, including genetic research, as a prerequisite to develop evidence-based guidelines specific to autism.
“The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches,” reacted Dr. Dawson. “Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks’ Autism Treatment Network (ATN).”
Dan Coury, M.D., ATN medical director, commented, “We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines.” In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. “Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians,” added Dr. Dawson.
The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.
In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, “The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN’s on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD.”
Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there’s not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) — the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.
Autism is a complex neurobiological disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About Autism Speaks
Autism Speaks is the nation’s largest autism science and advocacy organization. Since its inception only five short years ago, Autism Speaks has made enormous strides, committing over $131 million to research and developing innovative new resources for families through 2014. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks funds millions each year in new autism research, in addition to supporting the Autism Treatment Network, Autism Genetic Resource Exchange and a range of other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2 and an award-winning “Learn the Signs” campaign with the Ad Council which has received over $200 million in donated media. Autism Speaks’ family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit, a community grant program and much more. Autism Speaks has played a critical role in securing federal legislation to advance the government’s response to autism, and has successfully advocated for insurance reform to cover behavioral treatments. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.
About the Autism Treatment Network
Autism Speaks’ Autism Treatment Network (ATN) is North America’s first network of hospitals and physicians dedicated to improving healthcare and the physical health and well-being of children and adolescents with autism, through the creation and implementation of a coordinated care model, the development of common multidisciplinary screening and treatment protocols and, over time, the establishment of evidence-based consensus standards. The ATN currently consists of 14 academic medical centers across the US and Canada whose physicians, drawn from a range of specialties, are collaborating in research aimed at the development of clinical standards for the diagnosis and treatment of ASD and associated conditions. For more information, please visit www.autismspeaks.org/atn or www.autismspeaks.org/airp.