In 2007, the American Academy of Pediatrics (AAP) published a clinical report on autism spectrum disorder (ASD) providing pediatricians with information on the identification/evaluation and management of children with this disorder based on the available evidence.1,2 The report highlighted the important role pediatricians play in identifying and caring for these children.
Since that report, the reported prevalence of ASD has grown substantially.3-5 In 2007, the Centers for Disease Control and Prevention (CDC) estimated that 1 in 150 children aged 8 years had an ASD diagnosis based on 2000-study-year data.3 In 2018, the prevalence was reported as 1 in 59 children aged 8 years based on 2014-study-year data.5 This shows an estimated prevalence increase to 1.69% in 2018, up from 0.67% in 2007.
As more evidence has accrued since the 2007 report, a deeper understanding of the needs of these children and how to better help them has evolved. One tangible sign of this deeper understanding is action taken to promote improved diagnosis and treatment as shown by the autism legislation that exists in most states supporting payment for diagnosis and treatment where no such legislation existed in 2007.6 As such, the AAP, the Council on Children with Disabilities, Subcommittee on Autism, and Section on Developmental and Behavioral Pediatrics are updating the clinical report to keep pediatricians current on the evolving understanding of ASD and its management.
Susan L. Hyman, MD, Golisano Children’s Hospital, Rochester, New York, and Susan E. Levy, MD, MPH, the Children’s Hospital of Philadelphia, Pennsylvania, members of the Autism Subcommittee of the Council on Children with Disabilities, provided a brief primer of current information about ASD in a session during the 2018 AAP National Conference and Exhibition (NCE) titled “Autism spectrum disorder and the medical home: Identification, diagnosis, and management.”7
As indicated by the title of the session, a key focus of their presentation was to emphasize the need to establish and maintain a medical home for these children once screening has confirmed a diagnosis of ASD to support children and families through the challenges of different stages of their lives.
“We know so much more about autism spectrum disorder than we did 10 years ago, so we hoped that this talk along with other supportive tools would help primary care pediatricians feel more comfortable taking care of kids with autism and more able to serve as a medical home for them,” says Levy.
She stresses, however, that pediatricians are not expected to be experts in all the specialty areas that may be required to help a child with ASD, but that they should be able to provide a medical home for the child and his/her family to turn to when they are not sure about where to get help.
“Even if pediatricians are not sure what to do, they can provide the big picture and help support families,” Levy says, and, importantly, “enter into shared decision-making with families to help arrive at a consensus about the best treatment and the one the family wants to pursue.”
This article summarizes key issues highlighted in the AAP NCE presentation, with a particular focus on management and the important role of pediatricians to provide a medical home to these children and their families to help them navigate the lifelong challenges of this disorder. Emphasized is the importance of identifying and managing co-occurring conditions that often accompany ASD and contribute to the complexity of ASD, which supports the need for a medical home for these children and their families.