Autism Speaks advances standards for care to alleviate medical problems of children with autism
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.
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