In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our first item, New AAP Policy and Guidelines, is from Autism Speaks’ Top 10 Autism Research Events of 2007.
After years of parents urging for earlier diagnosis and better treatments, the American Academy of Pediatrics (AAP) issued two new clinical reports in October 2007 that will help pediatricians recognize autism spectrum disorders (ASDs) earlier and guide families to effective interventions.
The first report provides detailed information on signs and symptoms so that pediatricians can recognize and assess ASDs in their patients. More specifically, the report introduces universal screening, which means pediatricians must now conduct formal ASD screening on all children at 18 and 24 months regardless of whether there are any concerns. The second report reviews educational strategies and associated therapies, which are the cornerstones of treatment for ASDs, and confirms that early intervention is crucial for effective treatment. The report states that a child diagnosed with autism should be actively engaged in intensive intervention at least 25 hours per week, 12 months per year, with a low student-to-teacher ratio allowing for sufficient one-on-one time. The report further states the importance for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced treatment information.
The new guidelines will hopefully assure that at-risk children are finally appropriately referred without further delay. Both reports are part of a new AAP toolkit for pediatricians “AUTISM: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians,” which includes screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts.
Update since this story was first run: To respond to the AAP recommendations for evaluation by primary care providers of 18 and 24 months olds with suspected ASDs, in 2009 members of Autism Speaks’ High Risk Baby Siblings Research Consortium (BSRC) published an article in Pediatrics outlining several early signs of autism that physicians and other health care providers should be aware of. The paper also identifies potential screening tools that may be used to detect early behavioral indicators. Importantly, the authors address the challenges that primary care providers face in communicating the meaning of these early signs and symptoms.
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.