Rhode Island, the smallest state in the
USA, is affectionately called Little Rhody. Total population in the year 2000,
was 1,048,319 according to the Census Bureau. Rhode Island has 1,214 square
miles in all, with a land area of 1,054 square miles or 674,560 acres. There are
twelve national parks larger than Rhode Island, and the city of Los Angeles has
nearly 1,000 more miles of paved roads than the whole Ocean State.
Regardless of size, Rhode Island is a
great state. It has a beautiful domed State House and many historical landmarks
which include the First Baptist Church and the Torah Synagogue, the oldest in
the Nation. Its cities are colorful enough to have been the location of movies,
a television series and the Americas Cup. The disproportionately long shoreline
(384 miles) is breathtaking, and visitors can never forget Narragansett Bay,
Point Judith, Ocean Drive and the many beautiful beaches. Rhode Island is proud
of its very own Narragansett Indian tribe. This little state is home to Brown
University, Bryant College, Community College of Rhode Island, Johnson & Wales
University, New England Institute of Technology, Providence College, Rhode
Island College, Rhode Island School of Design, Roger Williams University, Salve
Regina University and the University of Rhode Island. It also has the Friars,
the Rams, the Pawtucket Red Sox and the Providence Bruins.
Unfortunately, Rhode Island may now
have a distinction it did not seek: A disproportionately large number of
children with autism per capita.
The Special Education Census published
yearly by the Rhode Island Department of Education (DOE) lists 14 categories of
primary disabilities, by school district. Two categories, Autism and Behavior
Disorders (BD) have risen sharply of late.
Autism has increased by 1,115 % between
1994 and 2002 in Rhode Island schools.
On June 30, 1994, there were 41 students
with the diagnosis of autism in Rhode Island schools. By June 30, 2002, that
number had risen to 498, not including two in Charter Schools. Behavior
disorders also markedly increased, as mentioned. The following table shows the
recent rise in both categories compared to all disabilities.
Last School Year
06/30/2001
06/30/2002
% Increase
Autism
407
498
23.35%
Behavior Disorders
2,583
2,848
10.25%
All Disabilities
31,793
32,789
3.13%
Last 4 School Years
06/30/1998
06/30/2002
% Increase
Autism
197
498
53%
Behavior Disorders
2,035
2,848
40%
All Disabilities
28,558
32,789
14.8%
This increase in autism is real and is NOT
due to better diagnosis. The more restrictive criteria of DSM IV have been
exclusively used since 1994 and have remained unchanged. Rhode Island has ONE
main center where cases are usually evaluated, ONE pediatric psychiatric
hospital, and FEW pediatric neurologists, developmental pediatricians and
pediatric psychiatrists. School departments, which are overwhelmed, are not
likely to accept the diagnosis of autism lightly and it is possible that high
functioning and/or less affected children may be watched with a Behavior
Disorder or Speech Defect label.
School Districts with 10 or more cases
of Autism
City or Town
Cases
Population
Pawtucket
55
72,958
Warwick
34
85,808
Providence
31
173,618
Westerly
25
22,966
Cranston
24
79,269
East Providence
24
48,688
Cumberland
23
31,840
East Greenwich
21
12,948
Lincoln
21
20,898
South Kingston
21
27,921
Portsmouth
20
17,149
Newport
17
26,475
Woonsocket
17
43,224
Middletown
15
17,334
Burrilville
14
15,796
Johnston
11
28,195
North Providence
11
32,411
Barrington
10
16,819
Chariho (District)
10
.
North Kingston
10
26,326
The high prevalence of autism in some
smaller towns in Rhode Island may be due to migration for better services.
Parents of affected children are known to sacrifice willingly in order to
provide their children with the best available education. But the difference in
prevalence is striking and is likely due to other factors, such as genetic
predisposition, ethnic origin, prior environmental insults and immune
susceptibility.
Though it is impossible to obtain specific
prevalence data from the individual schools and districts because of
confidentiality, such rates can be approximated. According to the 2000 Census
figures, children 5 to 19 years old were around 20% of the total and males
accounted for 48% of the population. East Greenwich, Rhode Island with a
population of 12,948 probably has 16 boys with autism (3 to 1 boys to girls). It
is therefore possible that as many as 1 in 78 boys attending school in
East Greenwich have autism. Similarly, the approximate prevalence of autism in
boys age 5 to 19 is 1 in 109 in Portsmouth, 1 in 118 in Westerly and 1 in 127 in
Lincoln schools. It will be vital that future research be focused on finding why
such a huge difference in autism prevalence exists between a suburban upscale
community such as East Greenwich with1 in 78 boys/1 in 256 girls and the
State Capital with 1 in 717 boys/1 in 2,329 girls.
Statewide, there are more children with
autism in the lower grades. More disturbing yet, is the number of preschool
children with the diagnosis.
According to the RI Department of
Education, the number of students needing special education and services has
been increasing at a much faster rate than expected with autism and BD,
accounting for much of the increase.
School Year
All Students
Special Education
.
.
.
1995-1996
149,802
26,427
1996-1997
151,325
27,583
1997-1998
153,321
28,558
1998-1999
154,785
28,993
1999-2000
156,458
31,011
2000-2001
157,355
32,043
2001-2002
158,046
33,058*
.
.
.
% Increase
5.5%
25.1%
*Includes 44 children in Charter
Schools and 224 children in 3 State Schools.
The ratio of children requiring special
help varied in different communities.
Between school years 1990-91 and 1998-99,
21 of 36 school districts expanded enrollments in special education
programs by 30% or more.
In 1996-1997, Rhode Island enrolled a
greater percentage of children 3-21 in special programs, 10.8%, than any other
state.
Obviously, children with disabilities
require more services, time and effort. Special provisions must be made for safe
transportation and expert nursing, in addition to the added specific educational
needs. Children with autism stress the districts even more. They require a
specialized staff for speech and language, occupational and physical therapy,
behavior modification, diet intervention and adapted physical education.
Formulated IEPs must be adhered to and supervisors must remain constantly
involved in order to coordinate with the network of medical, psychological and
educational outside consultants. Many professionals are thus involved in the
education and care of ONE child with autism and even the higher functioning
affected student will often need a shadow when mainstreamed.
The National Association of State Boards
of Education (NASBE) compiles relevant data on education for each state. The
following is a comparison of the contributions to school revenue, according to
NASBE for the year 2000. California was included because of its well-known
autism statistical studies.
Federal
State
Local
National Average
$18,581,511,000
6.80%
$127,719,673,000
46.80%
$119,538,243,000
43.8%
California
$3,443,221,000
8.60%
$23,736,295,000
59.30%
$12,379,999,000
30.90%
Rhode Island
$73,870,000
5.60%
$548,776,000
41.60%
$679,478,000
51.50%
The percentage of federal and state
funding of school revenue in Rhode Island is below the national average and most
educational dollars come from the communities. Why the Federal Government pays
different percentages of the education cost in different states is hard to
comprehend, as the federal mandates and expenses they generate are
proportionately the same for all states. In addition, in Rhode Island, large
cities often receive relatively higher state and federal contributions, while
smaller communities must raise a bigger part of the school revenue, sometimes as
much as 60% of the total, to meet the State mandates. The upward spiraling cost
of education in general and of special education in particular is therefore
quickly becoming everyones problem. As time goes by, it is likely that, because
of budget deficits, even fewer funds for education will be coming from federal
and state sources. The responsibility for providing adequate education will then
become an increasing burden on individual communities.
Superior educational and therapeutic
programs for autism MUST continue and even proliferate. Improvement is clearly
evident when children attend schools with excellent services. If the presently
used successful strategies are stopped, families and communities will have the
burden to care for thousands of damaged adults for the rest of their
lives, and the statement You pay now or you pay later could not be
more appropriate.
Lastly, it is extremely important that the
present accelerating increase in autism in Rhode Island be reversed. Autism
destroys children and families. At present, it is profoundly affecting many
communities that eventually will be unable to keep up with the increasing
financial and social costs.
The Autism Epidemic is everyones problem
and it is imperative that its causes be found and removed. Every possible
environmental toxin should be evaluated and none should be deemed untouchable.
Studies must involve parents and children, not just computers and databases.
Undoubtedly some cases of autism are due to genetic causes and some others are
due to environmental injuries in the first year of life, but in a third group of
children, regression in the second year of life is unquestionable.
In the past, parents were told the child
was born with the disease and symptoms just happened to be noticed in the second
year of life. The concept of autistic regression has now been accepted and
studies to investigate it are being encouraged by the National Institutes of
Health. So far, the causes for its present accelerating rise are not known for
sure. The scientists at the Center for Disease Control and Prevention (CDC) keep
repeating that they know what does not cause autism but so far, have not come up
with a single clinical study to find out what does, or a reasonable
explanation for the increase. The CDC did a fine job controlling past epidemics
in Rhode Island. Now is certainly the time for the Control and Prevention of
autism.
The flood of new cases will not stop till
the causes of autism are found. If that does not happen soon, more
families will be ruined and taxpayers will be increasingly burdened. Sadly, more
children in Rhode Island will grow to adulthood without ever knowing how
beautiful Little Rhody is!
F. Edward Yazbak, MD, FAAP TL Autism Research, Falmouth,
Massachusetts.
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"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"