Officials in Iowa realized that their data was probably wrong and are planning to conduct a survey in April of parents to get a more accurate picture, says Sue Baker, an official with the Iowa Department of Education. “We have been asking ourselves why,” she says, adding that one reason for the state’s low score might be that “you don’t need a medical diagnosis for autism to get services. That confounds how we count children.”
Iowa’s latest unofficial autism student count for the 2009-2010 school year was 5,127, up from 4,502 the previous year, she says, adding that Iowa is one of the few states permitted by the U.S. Department of Education to provide special education services on a “non-categorical” basis.
“We definitely increased our training and awareness about autism,” says Theresa Coons, an education specialist with the Nebraska Department of Education. “We basically started that in 2001 and 2002. Some children could have been identified in a different category.”
Click Image for Larger Graph of Autism By State
Figuring the impact that taxpayers face from autism is difficult since individuals with the disability are serviced by many different programs. For instance, the Obama administration’s budget for Special Education for the FY 2012 is $11.7 billion, up 1.7% from a year earlier. The Administration also is proposing a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide education to children with disabilities. There also are proposed increases to autism research along with cuts to other programs.
“Coinciding with this increase in demand for services is a heavy burden on federal and state budgets to cut costs due to budget deficits,” writes Peter Bell, executive vice president for programs and services at Autism Speaks, in an email. “No matter how you view it, with the number of Americans affected with autism rising and the pool of funds available for services falling, autism continues to be a major public health crisis in need of immediate attention.”
For parents of children with autism, the diagnosis can be a ticket to scores of government services. In fact, people move to states such as New Jersey because services for autistic kids are considered to be superior. The expenses don’t end there, however. People in states without good services are often saddled with thousands of dollars of out-of-pocket expenses. Some have gone so far as to take out a second mortgage on their homes. It’s easy to see why.
“I know a lot of parents who have done that and taken lower-paying jobs, ” says the Autism Society’s Sell.
In 2007, Harvard researcher Michael Ganz estimated the costs of caring for individuals with autism at $35 billion a year, or about $3.2 million per person over their lifetime. At the time, Ganz figured his projection might be too low because the costs are difficult to quantify given the large amount of treatments that are funded out of pocket by patients and their families. The intervening years have probably proven Ganz’s theory correct even as government officials struggle to get a grip on the problem.
The costs associated with autism are frightening for a number of reasons. First, the developmental disorder represents a small segment of the population, about 1 in 110 children, equaling less than 700,000 people, according to the Centers for Disease Control and Prevention. In contrast, more than 5 million people have Alzheimer’s Disease, which affects 1 in 8 people aged 65 and older, according to the Alzheimer’s Foundation. The CDC estimates that 12 million non-institutionalized adults suffer from heart disease, about 12% of the overall population. More than 1 million people are thought to be infected with HIV, the virus that causes AIDS. The level of understanding about these diseases is vastly superior to autism.
Even semantics have not been settled. Scientists are doing away with labels such as Asperger’s Syndrome, which refers to a particular type of autism, and now prefer the all-encompassing term of Autism Spectrum Disorder (ASD).
Much of the data about autism appears illogical. For instance, a CDC study of 11 monitoring sites found a 57% increase in the prevalency of autism between 2002 and 2006. Deaths from heart disease and stroke, by contrast, plunged in 2010 along with cancer deaths.
“Clearly it was higher than we thought it would be,” says Dr. Laura A. Schieve, an epidemiologist in CDC’s National Center on Birth Defects. “We think it’s a public health crisis.”
The increase may be attributable to better diagnosis as criteria have expanded, increased awareness or an as-yet unknown environmental issue, she says.
At one time, doctors figured that cold, unfeeling mothers were responsible for children becoming autistic. Four decades later, scientists realize that their initial theory was wrong, but are nearly as clueless about the condition which can render otherwise intelligent people incapable of interacting with others.
About the only thing that experts agree on is that this is a major public health problem, and that the costs associated with it are rising. What is still heavily debated is whether we have reached a plateau where pediatricians and other medical professionals are starting to diagnose these disorders in a stable way, or if the prevalency of children with this disorder will continue to nearly double over a five year period. If that happens, how will treatment be funded?
“We don’t yet know if there will be further increases in the prevalence of ASD or when the prevalence estimates will stabilize, or even decrease,” says Schieve. “CDC is continuing to monitor ASDs through the ADDM (Autism and Developmental Disabilities Monitoring) network. We hope to finalize our analyses of the 2008 surveillance year shortly, and publish that report later this year.”
Jonathan Berr, with Baxter Allen, M.D.