Autism Diagnoses Buried on Pediatricians' Back Burners

By Neil Osterweil, Senior Associate Editor, MedPage Today
Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University
of Pennsylvania School of Medicine.
May 11, 2006

BALTIMORE, May 11 — Autism's full spectrum is not often on the radar
screen of primary care pediatricians, and even when doctors are
thinking autism a proper diagnosis may take a year or more.

Those conclusions came from two studies published in the May 11
supplement to the April issue of the Journal of Developmental and
Behavioral Pediatrics.

In a study of eight-year-old children from the Atlanta area, CDC
researchers found that while the children were initially evaluated at
a mean age of four, they were not diagnosed with an autism spectrum
disorder until a mean of 5.1 years.

Some children were not evaluated or diagnosed until they were almost
nine years old, reported Catherine Rice, Ph.D., and colleagues from
the CDC and the Emory Autism Center.

The authors of the study did not investigate reasons for the 13-month
delay.

But in a separate study, researchers from Johns Hopkins here reported
that primary care pediatricians they surveyed said they were not
familiar with the screening instruments used, were reluctant to make
the diagnosis themselves and deferred instead to specialists, or
simply didn't have the time.

José Cordero, M.D., director of the CDC's National Center on Birth
Defects and Developmental Disabilities, said that although the Atlanta
survey is based on local data, "it serves as an important indicator of
the nationwide challenges of diagnosing autism, particularly more mild
cases.

"The real public health challenge is to educate doctors on the signs
of autism and to encourage use of standardized diagnostic instruments
that better identify symptoms relevant to autism spectrum disorder and
help distinguish autism spectrum disorder from other developmental
delays or disorder," he said.

The CDC researchers drew on data from the Metropolitan Atlanta
Developmental Disabilities Surveillance Program 2000, a
population-based surveillance program.

They identified 115 eight-year-olds who were diagnosed with an autism
spectrum disorder, (autistic disorder, pervasive development disorder
not otherwise specified, or Asperger's syndrome).

They looked at the earliest age of evaluation and the earliest age of
diagnosis and type of initial autism spectrum disorder diagnosis,
evaluation sources that documented the first diagnosis, and the
characteristics of the professionals who assigned the diagnosis, and
the tools they used to reach their conclusions.

"We found that children with autism spectrum disorder identified by
the surveillance system were initially evaluated at a mean of 48
months but were not diagnosed with autism spectrum disorder until a
mean age of 61 months," the authors wrote. "There were no differences
in timing of diagnosis based on sex or racial/ethnic classification,
although degree of impairment associated with ASD predicted mean age
at first evaluation and mean age at first ASD diagnosis."

They also found that most children (76%) were identified as having an
autism spectrum disorder in hospitals and clinics, although 24% of the
children did not receive a documented diagnosis until they started
school, at which time their developmental status was called into question.

Although children with more severe symptoms of autism were evaluated
and diagnosed nearly two years earlier than those with mild symptoms,
the average age of first evaluation for this subgroup was 3.5 years,
and the average age at diagnosis of a severe disorder was 4.5 years.
Yet research has shown that most parents of children with an autism
spectrum disorder reported concern about their children's development
before the children turn two years.

The researchers also found that among the healthcare professionals who
made the first diagnosis of an autism spectrum disorder, 70% did not
used a standardized diagnostic instrument when they made the call.

The Johns Hopkins researchers, led by Susan dosReis, Ph.D., of the
division of child and adolescent psychiatry, surveyed primary care
pediatricians in Delaware and Maryland.

They found that among 255 eligible respondents, 82% said they
routinely screened for general developmental delays, but only 8%
screened for an autism spectrum disorder.

"The main reasons reported for not screening for autism spectrum
disorders were lack of familiarity with tools (62%), referred to a
specialist (47%), or not enough time (32%)," Dr. dosReis and
colleagues wrote.

"Most specialist referrals (77%) were to a developmental
pediatrician," the Johns Hopkins researchers added. "Most
pediatricians (71%) believed that autism spectrum disorder prevalence
has increased, and nearly all attributed this to changes in diagnostic
criteria and treatment."

The CDC and the American Academy of Pediatrics have a joint campaign
called "Learn the Signs/Act Early'' that promotes the used of autism
spectrum disorder screening tools among general practice pediatricians
and other physicians.

dosReis S et al. "Autism Spectrum Disorder Screening and Management
Practices Among General Pediatric Providers." J Dev Behav Pediatr
27(2) Supplement 2:S88-S94

Further information is available at (http://www.firstsigns.org and
http://www.cdc.gov/ncbddd/autism/actearly/.