US Autism Ambassadors
Response to the CDC Study
January 2, 2003
The Centers for Disease Control and Prevention (CDC) recent press release
confirms that the prevalence of autism in the United States is exploding. The
study, which was conducted in Atlanta, GA, in 1996 and published in the January
1, 2003, edition of the "Journal of the American Medical Association," reveals
that the prevalence of autism increased 10-fold over the previous decade. Autism
Awakening and the US Autism Ambassadors published several letters and articles
of autism pandemic epidemic rates of increases in many states and continues to
grow at alarming rates. We need to ensure that we are doing everything for these
families that we can to ensure each individual with autism reaches their
potential.
The study, conducted in five metropolitan counties in Atlanta, found that 987 of
289,456 children aged 3 to 10 had some form of autism. The report found that the
overall prevalence rate was 3.4 per 1,000. Many studies have been conducted, in
the United States and around the world that confirms we have a pandemic wide
spread epidemic states. We as a people and as a government need to do something
now. Current estimates that the cost to our national economy for autism
treatment, education, and services is some $90 billion a year. This $90 billion
price tag is set to grow to more than $300 billion over the next decade, which
means the national health care crisis, will only worsen but we need to ensure
that the burden of cost does not just rest on the parents. May parents incomes
are already stressed and others cannot afford many of the options available,
they need help now.
Over the past few years there are new and encouraging treatment, therapy, and
educational options that are showing lifelong benefits to those with autism
allowing them to reach their potential, when they are introduced at an early age
and aggressively practiced. Individuals around the world over the past few years
have been the pioneers in these new options and the knowledge we have gain from
this has proven to be priceless. We must provide this information in the medical
manuals for medical professionals to utilize that reflects these new methods.
Research must address treatment approaches because, if successfully implemented,
they could significantly improve the quality of life for those with autism and
greatly reduce the cost of present and future adult services. Research must also
address the mercury and aluminum connections in vaccines with a vengeance. Many
documents, secret meeting minutes, and other reports and exhibits have surfaced
over the past few years that prove these connections are strong and we need to
continue to work on increased research in this area. In light of the above
documents mentioned and conflicts of interest that have been uncovered we must
also request that all CDC, NIH, and other government funded studies and research
are reviewed by an independent review committee for the purpose of an
independent audit of all their research. This committee should include the US
Autism Ambassador, an autism professional from each of the autism groups,
parents, and medical professionals. This will aide in unbiased research into the
vaccine connections. Many groups have shown a great interest and would volunteer
for such a committee, such as but not limited to, Autism Ambassadors, Autism
Awakening, Autism Help For You, Child Screen Team, VOSI, and many more.
While we applaud the efforts of the government and congress for conducting
investigative hearings into issues surrounding autism, we need to also ensure in
2003 that we begin senatorial hearings into autism as both congress and senate
are make decisions that will effect the lives of millions of families coping
with autism. Many pieces of information should be viewed by all legislators so
they can make informed decisions on these matters of grave importance. We
believe with Congressional and Senatorial hearings into autism that we may reach
conclusions that might not otherwise be reached in a quick and speedy manner.
We urge the government to invest more funding in research into the causes and
treatments for autism and into effective services for children and adults
already affected by autism and their families. We suggest that this money should
be new ear marked funds separate from the CDC and NIH due to the out cry of the
people for unbiased research and uncovered conflicts of interest and in light of
uncovered documents.
We urge you to pass the Vaccine Protection Act which after a few short weeks
already has over 1,472 signatures to view this resolution or sign it please
visit online petition located at:
http://autismawakeninginia.bizland.com/autismandaluminumvaccineexposurecomparisionstudy/id26.html
To view the full CDC report, you may visit Journal of the American Medical
Association ( http://jama.ama-assn.org/
)
Written By:
LD Wedewer, US Autism Ambassador,
Joyce Minor US Autism CO-Ambassador
And Autism Awakening
1900 K Street SW
Cedar Rapids, IA 52404-3620
319-364-2687 or 319-431-8993
EMAIL: USAutismAmbasadr@aol.com
www.AutismAwakening.com
CDC STUDY
The Prevalence of Autism
[This is an editorial in THE JOURNAL By Eric Fombonne, MD. Dr.
Fombonne is a well known epidemiologist. The Jounal is published by the
American Medical Association. This article and the next is about the Altanta
Study on the prevalence of autism. The report, Prevalence of Autism in a US
Metropolitan Area, by Marshalyn Yeargin-Allsopp, MD, Catherine Rice, PhD,
Tanya Karapurkar, MPH, Nancy Doernberg, Coleen Boyle, PhD, Catherine Murphy,
MPH
~2OO3 American Medical Association. All rights reserved. (Reprinted) JAMA,
January 1, 2003-Vol 289, No. 1 49, can be downloaded at
http://www.freewebz.com/schafer/autismatlanta.pdf.
The number of epidemiological studies of autism has increased in
recent years, including in the United States, where investigators are now
catching up in what has traditionally been a weak area of child psychiatric
research in North America. In this issue of THE JOURNAL, Yeargin-Allsopp et
al1 report the findings of a survey, which was funded by the Centers for
Disease Control and Prevention, that found a rate of 34 per 10 000 for
autism spectrum disorders (ASDs) among 3- to 10-year-old children in
metropolitan Atlanta.
The strengths of the survey include use of multiple ascertainment
sources and large sample size (ie, 987 confirmed ASD cases compared with a
median sample size of 50 in 32 previous studies),2 thereby allowing the
authors to have good precision in the estimates and to conduct meaningful
subgroup analyses. In addition, this study is the first to derive a robust
population-based estimate for the rate of ASD in black children, which is
comparable to other racial groups.
Other findings are typical of those found in previous surveys with ASD
cases, with a strong overrepresentation of boys, cognitive impairments in
more than two thirds of cases, and a relatively high rate (8%) of epilepsy.
Approximately 18% of the sample did not have a previous diagnosis or were
not suspected of having ASD, and children from black, younger, or less
educated mothers were more often identified through schools as the only
source of case finding. These findings highlight the need to rely on
multiple ascertainment sources in epidemiological studies of ASD and caution
against findings that are based on single service provider databases.
The prevalence rate of 34 per 10 000 is, however, likely to be an
underestimate. First, as the authors point out, children with milder or
high-functioning (ie, normal IQ) ASD subtypes are likely to have been
missed. Second, the lower prevalence in 3- and 4-year-olds may reflect lower
sensitivity of case identification among younger children for developmental
disorders that often are diagnosed later. Third, there was an unexpected
decrease in prevalence among 9- and 10-year-olds. Although it would be
tempting to interpret this age trend as indicative of a secular increase in
the rate of ASD (ie, the younger the birth cohort, the higher the
prevalence), such an explanation is both unlikely and biologically
implausible because rates plateaued for birth cohorts aged 5 through 8.
Rather, the authors suggest that these differences might reflect new
diagnostic criteria for autism and increased availability of developmental
disability services for children with autism in the 1990s. What this means,
however, is that the rate of 41 to 45 in 10 000 obtained for the 5- to
8-year-olds might be more accurate. This rate also is more in line with
those of 3 recent surveys that yielded prevalence estimates in the range of
60 per 10 000.3-5
High prevalence rates from more recent epidemiological surveys have
fueled the debate about a possible epidemic of autism. However, 4 separate
issues need to be addressed. The first issue concerns the best current
estimate for the prevalence of autism and related disorders. Increasing and
consistent evidence from recent surveys shows that the prevalence rate for
ASDs (including not only autism disorder but also Asperger disorder and
pervasive developmental disorder-not otherwise specified) is approximately
60 per 10 0003-5; the study results from Yeargin-Allsopp et al concur with
this conclusion. This estimate translates to approximately 425 000 children
younger than age 18 years with ASDs in the United States, including 114 000
children younger than 5 years.
The second issue is whether the prevalence of ASD has increased over
time. Surveys conducted in the 1960s and 1970s only dealt with autism
disorder (as opposed to ASD) and with a rather narrow definition of autism,
as per Kanner's descriptions,6 and not accounting for autism occurring in
subjects who are not mentally retarded. Thus, comparisons of rates over time
generally deal with studies that have used different case definitions,
making interpretation of time trends difficult. The closest estimate of ASD
prevalence available in the late 1970s was 20 per 10 000 in a survey from
the United Kingdom that was limited to the severely impaired children with
ASD.7 Comparing rates for subtypes of ASD provide another avenue for
estimation over time especially for autism disorder, but as shown by
Yeargin-Allsopp et al1 and other surveys,3-5 the breakdown in ASD subtypes
is not always reliable. Nevertheless, rates of autism disorder in recent
surveys have consistently been more than 10 per 10 000 whereas previous
prevalence estimates ranged from 4 to 5 in 10 000.2 Therefore, from the
available evidence it can be concluded that recent rates for both ASD and
autism disorder are 3 to 4 times higher than 30 years ago.
The third issue addresses possible interpretations of this increase in
prevalence. That is, does this increase reflect a broadening of the concept
of ASD with more inclusive diagnostic criteria and improved methods of case
finding in population surveys? It is generally agreed that the definition of
autism has been broadened over the last decades, particularly at the less
severe end of the spectrum. These major changes occurred in nosology from
the Diagnostic and Statistical Manual of Mental Disorders, Third Edition
(DSM-III)8 in 1980 to the DSM-Revised Third Edition9 in 1987 and the DSM,
Fourth Edition10 in 1994. Kanner's infantile autism6 was replaced in 1980 by
the concept of pervasive developmental disorder. Among the pervasive
developmental disorders, pervasive developmental disorder-not otherwise
specified (or atypical autism) has now become the most widely used ASD
diagnosis, and Asperger disorder emerged as a new diagnostic category in the
1990s. Unless comparisons also control rigorously for changing case
definitions, interpretation of differences in prevalence rates over time and
across surveys will be virtually impossible.
Moreover, there is strong evidence that differences in methods for
case finding can account for a huge proportion of the variability of
prevalence estimates between surveys. For example, in 4 US and 4 UK studies
published recently, 14- and 6-fold variations in prevalence rates were
found, respectively.2 Although these 2 sets of studies were conducted at the
same time, in similar age groups, and in the same countries, the lack of
consistency in estimates is striking and demonstrates how unique design
features within each study can affect the prevalence estimation. In both
countries, studies relying on single administrative sources for identifying
cases yielded low estimates, whereas investigations using proactive methods
for case finding, that is, multiple sources of ascertainment and direct
diagnostic procedures, yielded much higher rates. Needless to say,
comparisons of population surveys over time are bound to be even more
confounded by factors difficult to control.
Referral statistics also have been used to evaluate trends over time,
but these data are confounded by changes over time in factors such as
referral patterns, availability of services, public and professional
awareness, age at diagnosis, and diagnostic concepts and practices. For
example, the report from the Department of Developmental Services,
Sacramento, Calif,11 showed an increase in the number of children receiving
public services, but it failed to adjust for key factors, such as changes in
population size, diagnostic practices, or differential migration.12 Another
widely publicized report on children enrolled in this public service system
concluded that "some, if not all, of the observed increase represents a true
increase in cases of autism in California."13(p42) Yet, the authors stated
earlier in this report that "Improved case finding could result in an
apparent increase in the number of cases. . . . This study does not examine
the extent to which differences in case finding over time have resulted in
any changes in the number of autistic children who present to the Regional
Centers."13(p13)
By contrast, a recent reanalysis of this dataset indicated that during
1987 to 1994, diagnostic substitution occurred; thus, while the prevalence
of autism increased from 5.8 to 14.9 per 10 000, the prevalence for mental
retardation decreased from 28.8 to 19.5 per 10 000. These trends then cancel
each other.14 According to the authors, new federal legislation (Individuals
with Disabilities Education Act15) mandating that states provide early
intervention programs for toddlers with developmental delays played a role
in the increasing use of the diagnosis of autism. Moreover, in the last 15
years evidence has accumulated for the effectiveness of early intensive
behavioral interventions for autism,16 and most families could not support
their high costs outside the public service delivery system. Thus, there is
good evidence to support that higher prevalence rates reflect changes in
diagnostic practices, improved identification and availability of services,
and other similar factors.
The fourth issue involves the hypothesis of an increasing trend in the
incidence of ASD. Whereas evidence exists that a substantial part of the
increase in prevalence is due to methodological factors, the additional
possibility of a secular increase in the incidence of autism cannot be ruled
out. Unfortunately, most available epidemiological data are derived from
prevalence surveys, and the few studies that provide incidence rate
estimates have not been adequate to test this hypothesis. In addition, no
strong candidate environmental exposures have been identified. Claims of an
association with measles-mumps-rubella immunization have not been borne out
by recent studies,17-19 and evidence for causal association with other
exposures, such as mercury-containing vaccines, is weak.20, 21
Extending the already substantial research effort, the Centers for
Disease Control and Prevention has recently funded a surveillance network
across several states.22 This and other initiatives should help address more
directly hypotheses about secular changes in the incidence of ASDs.
Finally, the current social context seems to exert a stronger
influence on the debate than the scientific arguments. Although claims about
an epidemic of autism and about its putative causes have the most weak
empirical support, the subsequent controversy has put autism on the public
agenda. In recent years, children with autism, their families, and
professionals involved in their care and in research have seen welcome and
legitimate increases in public funding. Yet, ironically, what has triggered
substantial social policy changes in autism appears to have little
connection with the state of the science. Whether this will continue to be
the case in the future remains to be seen, but further consideration should
be given to how and to why the least evidence-based claims have achieved
such impressive changes in funding policy.
Author/Article Information
Author Affiliation: McGill University and Montreal Children's
Hospital, Montreal, Quebec.
Corresponding Author and Reprints: Eric Fombonne, Montreal Children's
Hospital, 4018 St Catherine W, Montreal, Quebec, Canada (e-mail:
eric.fombonne@mcgill.ca). Editorials represent the opinions of the authors
and THE JOURNAL and not those of the American Medical Association.
References
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Murphy C.
Prevalence of autism in a US metropolitan area.
JAMA. 2003;289:49-55.
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Mol Psychiatry. 2002;7(suppl 2): S4-S6.
3. Baird G, Chairman T, Baron-Cohen S, et al.
A screening instrument for autism at 18 months of age: a 6 year follow-up
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Pervasive developmental disorders in preschool children.
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Prevalence of autism in a United States population: the Brick Township, New
Jersey, investigation.
Pediatrics. 2001;108:1155-1161. MEDLINE
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Is there an epidemic of autism?
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A Comprehensive Pilot Study.
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Pub L No. 94-145, 20 USC 1401 et seq. Federal Register. August 23, 1977;
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N Engl J Med. 2002;347:1477-1482.
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Available at: http://www.cdc.gov/ncbddd/dd/aic/states/default.htm#addm.
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