In December, the American Academy of Pediatrics put out a new clinical report on autism, an extensive document with an enormous list of references, summarizing 12 years of intense research and clinical activity. During this time, the diagnostic categories changed — Asperger’s syndrome and pervasive developmental disorder, diagnostic categories that once included many children, are no longer used, and we now consider all these children (and adults) to have autism spectrum disorder, or A.S.D.
The salient diagnostic characteristics of A.S.D. are persistent problems with social communication, including problems with conversation, with nonverbal communication and social cues, and with relationships, together with restricted repetitive behavior patterns, including repetitive movements, rigid routines, fixated interests and sensory differences.
Dr. Susan Hyman, the lead author on the new report, who is the division chief of developmental and behavioral pediatrics at Golisano Children’s Hospital at the University of Rochester, said in an email that much has changed over the past 12 years. She pointed in particular to increased medical awareness and understanding of conditions that often occur together with A.S.D., and to a greater emphasis on planning — together with families — how to support children as they grow.
Dr. Susan E. Levy, a co-author of the statement who is a developmental behavioral pediatrician at Children’s Hospital of Philadelphia, said that one key message of the report is the emphasis on early identification and referral for treatment, even if a diagnosis of autism is suspected but not yet confirmed. The outcomes are better when treatment starts as early as possible, she said.
The average age of diagnosis is now around 4 years, but the goal is to get it well under 2, she said. And children who are at higher risk — for example, those whose siblings have A.S.D. — should receive especially close screening and attention.
Since the waits can be long at specialty clinics, the authors of the report hope to see more general pediatricians and primary care providers working with families, even while they are waiting for a full evaluation, referring young children to early intervention or to special preschool programs, so that treatment can begin.
“The interminable wait with worry that parents are faced with currently is untenable,” said Dr. Marilyn Augustyn, a developmental and behavioral pediatrician at Boston Medical Center and professor of pediatrics at Boston University School of Medicine, who also reviewed the new guidelines. “I hope this document makes primary care clinicians more comfortable so while they’re waiting for a diagnosis, they’re doing something.”
And the diagnosis, in turn, may be most important because it can help families access the most effective — and most intensive, and sometimes most expensive — treatments.
What do we mean by treatment? Behavioral interventions are “very, very important,” Dr. Levy said. The most intense intervention is Applied Behavioral Analysis (A.B.A.), a program that addresses specific behaviors, identifying triggers and antecedents, and responding with rewards when a child behaves in the desired way.