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Yeargin-Allsopp, M, C Rice, T Karapurkar, N Doernberg, C Boyle and C
Murphy. 2003. Prevalence of autism in a US metropolitan area.
Journal of the American Medical Association 289:49-55.
Press
coverage:
Atlanta Constitution Journal
New York Times
Reuters Health
Recent
surveys of autism in Brick Township, NJ,
California and
Britain had surprised experts because the numbers were so large,
running up to ten times higher than historical rates would indicate.
This new report from the US Centers for Disease Control finds
that the number of autistic children living in the Atlanta region is
also high, 3.4 per thousand, consistent with the more recent surveys.
Most of the autistic children were boys.
This rate
does not indicate that Atlanta's rate is higher than other regions in
the US. Too few current data are available to reach that conclusion.
More likely, other regions in the US are experiencing these higher rates
also, at least judging from reports of increased demand for special
education services for autistic children.
This survey,
the largest of its kind ever undertaken in the US, was unable to
resolve a key question: how much of the increase is a real
change in the frequency of autism vs. artifactual changes that might
result from changes in diagnosis definition, surveillance method or
parental incentives to report cases? It nonetheless serves as an
important, perhaps definitive benchmark against which to compare future
research. It also yielded important insights into the demographics of
autism, particularly on risks for boys vs. girls and on race.
The CDC has
studies underway in other 13 other communities around the US designed to
provide better information.
What
did they do? Yeargin-Allsopp et al. mounted an
ambitious 5-county survey in the Atlant area to identify all children
with any form of autism between the ages of 3 and 10. Their work was
carried out in two phases.
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First, they systematically reviewed as many relevant
medical/educational (at many different medical, clinical and
educational institutions) to identify all children who had been
screened using methods that would allow them to be classified as
autistic.
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Second, a team of experts scoured through these records and
independently determined whether the children met the criteria for
autism. They included three variants of autism (collectively referred
to as autism spectrum disorder): autistic disorder ("classic
autism), Asperger disorder, and pervasive developmental disorder-not
otherwise specified" (PDD-NOS). Their diagnoses followed the criteria
described in the standard "Diagnostic and Statistical Manual of
Mental Disorders, 4th Edition." This detail is important because
it a somewhat broader set of criteria than used in previous decades.
Note also
that this survey was all through analysis of records; no children were
seen directly.
What
did they find? Of the 289,456 children aged 3 - 10 living in
the 5-county metropolitan Atlanta area in 1996, 987 were found to meet
the criteria for autism spectrum disorder. This rate is 3.4 per
1000.
No
differences were found between children of different races. Most of this
children surveyed were either black (38%) or white (58%).
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Overall, boys were more likely to be autistic than girls:
5.3 vs. 1.5 per 1000, respectively.
This
ratio did not prevail across all degrees of autism, however. As can
be seen to the right, the sex ratio decreased with severity of
impairment of cognitive function. The number without impairment was
much greater than those with severe impairment.
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This graph is based upon the number of children in the sample
with tests of cognitive ability available for review. N for
children with no cognitive impairment was 280; for those with
an IQ score less than 20, N = 23. |
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This
pattern is consistent with prior studies.
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Yeargin-Allsop et al. also found that the rate of autism
varied with age (left). They note that it is not surprising to
observe lower rates at the youngest ages, because the syndrome
either may not have developed or been diagnosed. The decline at ages
9 and 10 raises other questions, perhaps having to do with changes
in diagnostic criteria. Narrower criteria were used before the
publication (1994) of those used in this study. |
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What
does it mean? This research serves best to provide a rigorous
benchmark for the prevalence of autism in a large metropolitan area,
Atlanta, within the US. Rates in Atlanta are consistent with other
recent studies, and differ from those in previous decades.
Unfortunately, because of changes in diagnostic procedures, in public
attention given to autism, and in the nature of services provided to
autistic children (altering incentives for reporting), "debate continues
about whether the overall prevalence of autism has increased or whether
past rates underestimated true prevalence."
Recent work
conducted for the California State Legislature presented several
analysis supporting the interpretation that the change is real.
This work is available publicly, but has not yet been peer-reviewed.
That review process may reveal weaknesses in the conclusions not readily
apparent.
The authors
of the current study conclude that this debate "is difficult to
conclude retrospectively.
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