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 America’s 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.

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.

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.
 

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.

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 with 1 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.
 
 

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.
 

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 everyone’s 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 everyone’s 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.

E-mail: TLAutStudy@aol.com

December 27, 2002

© 2002

Editor’s Note: The author practiced pediatrics and was a school physician in Northern Rhode Island for 34 years.