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New Models of Care for Autism

April 2013

A Message from:

   Charles Homer  

Daniel Coury, MD
Medical Director of the Autism Speaks Autism Treatment Network

Charlie Homer, MD, MPH President and CEO of the National Initiative for Children's Healthcare Quliaty (NICHQ)

James Perrin, MD President-elect of the AAP; Director of the Autism Intervention Research Network on Physical Health

Just in time for Autism Awareness Month, the Centers for Disease Control and Prevention (CDC) released a study indicating further growth in the reported prevalence of autism spectrum disorder (ASD), particularly among the adolescent population. Parent-reported diagnosed autism cases in the US significantly increased from 1 in 88 in 2007 to 1 in every 50 school children between 2011 and 2012.

Unfortunately, our health care system is ill prepared to respond to this increased prevalence and meet the needs of these children and their families. The continued rise in reported prevalence of ASD has been accompanied by an increase in referrals for evaluation at developmental centers. Wait lists for diagnostic assessments are several months long at most major centers, a key concern because a delay in diagnosis means a delay in intervention.

Even after a child receives the diagnosis of autism, access to quality care doesn’t necessarily get better. Specialists have long waiting lists and are often not connected to local resources. Nor are they focused on the health needs of children with autism which, while similar or identical to those of typically developing children, may be more difficult to assess or treat. At the same time, many primary care providers are confused by the various conflicting reports of treatments for ASD and its associated symptoms and uncomfortable managing these children in their offices or clinics.

New approaches are essential. One strategy is to redesign services so that more children receive effective, family-centered and holistic care from their child’s primary care provider in their home communities, while maintaining access as needed to ASD specialists. Such care would integrate traditional medical care with expertise in behavioral health. These health care services would complement the broader infrastructure of educational and behavioral support services across the lifespan that these children and families require.

What would such care look like? Consider a recent story told to us from one of the teams in the Autism Treatment Network:

A mother of a 10-year-old boy with autism—we’ll call him “Johnny”—was having a good day when her cell phone rang. Her heart sank when she saw it was her son’s teacher. Her initial thought was, “what now?” Her fears were confirmed when the teacher reported that Johnny’s behavior had worsened and she was unsure if he could stay in that class. Not knowing where to turn, the mother called Johnny’s developmental pediatrician.

In advance of the visit, the office staff for Johnny’s pediatrician sent Johnny’s mother a brief questionnaire about Johnny’s behavior and common medical issues such as constipation and sleep. Johnny’s mother reported that Johnny had indeed been experiencing constipation issues, but she hadn’t paid particular attention to this. At the office, the doctor suggested a new treatment plan for Johnny’s constipation, and asked the mother to send a daily report on Johnny’s progress. Over the next week, with this close monitoring and feedback, they were able to make major improvements in Johnny’s physical symptoms and, at the same time, his behavior improved dramatically.

Johnny’s story indicates how high quality medical care, ideally integrated with behavioral health, can be critical to improving the functioning and behavior of many children with autism spectrum disorders. Such care need not be based at specialized autism treatment programs, but must be provided by clinical teams that embrace care for families of children with ASD.

The Autism Intervention Research Network on Physical Health (AIR-P), a program supported by the Combating Autism Act and built on the Autism Speaks Autism Treatment Network, is working to develop such models of care. In addition to undertaking research to increase the evidence for ASD care, these centers are also using quality improvement methods to develop more effective strategies to manage common medical challenges, such as that experienced by Johnny and his mother. As they learn these new approaches, they are also engaging primary care providers so they develop more effective partnership and shared care resulting in increased specialists’ availability for consultation and treatment. These same sites are also seeing very promising results using modern queuing theory and operations research methods to dramatically reduce waits for evaluations without increasing specialist staff.

Improvements in the management of constipation and insomnia, two issues that commonly burden children with ASD, are particularly encouraging. Innovative strategies being tested at each site are demonstrating that these conditions usually respond to typical treatments, and that frequent communication and adjustment of the treatment strategy is crucial to improvement.

These new approaches can help speed the process of evaluation and treatment and limit the effects of common medical problems on the behaviors of children with autism. Moreover, those changes can translate into improving the child’s behavior at school and allow him or her to better participate in educational programs. That means more mothers like Johnny’s can spend less time worrying about the next phone call.

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