Can America Afford The Rising Cost Of Autism?

March 10, 2011 by Douglas A. McIntyre

If past trends are any indication, autism rates could rise by as much as 75% in the next five years. This could not have come at a worse time for the nation’s overburdened and underfunded school districts, which are facing unprecedented financial stress as government aid continues to dry up. Autism, though, is a public health crisis like no other.

Scientists continue to offer multiple hypotheses as to why the prevalence of the disorder has soared by 600% over the past 20 years. The mysterious and often-vexing condition is poorly understood by scientists. Researchers are not sure why some people with autism can function at a high level, receive an education and hold down a job, while others exist in stony silence, trapped in their own minds. School districts are tasked with helping both types of students. Experts say its costs to society range between $35 billion and $90 billion per year.

“In only the last 3 years we have seen autism prevalence in the U.S. as reported by the CDC increase from 1 in 150 to 1 in 110 children,” writes Michael Rosanoff, associate director public health research & scientific review at Autism Speaks, in an email. While there has not been any indication that the rise in autism prevalence is slowing, recent research has shown that part of this increase may be due to changes in diagnostic approaches and awareness rather than a true increase in autism risk. On the other hand, converging findings also suggest that these factors account for only a portion of the increase and cannot alone explain the dramatic rise in autism prevalence.”

Indeed, the disorder is maddening for many reasons. First, there is no cure though people with autism can lead productive lives when they receive adequate services. Those services, of course, cost money. Without them, autism may worsen, potentially requiring even more expensive interventions. Experts agree that the earlier these therapies start, the more likely the chances are for success.

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“That is in essence the argument I have been making,” says Jeff Sell, vice president public policy, Autism Society, in an interview. “If we sit back and do nothing, we are like Nero watching while Rome burns.”

Data reviewed by 24/7 Wall St. shows there has been a 76% increase in the number of reported autistic students in public schools between 2004 and 2009, according to The U.S. Department of Education’s Child Count data. More than a half-dozen states including Pennsylvania, Indiana, Oregon, Colorado, Nebraska, Rhode Island North Dakota and Wyoming showed that their autistic student populations have doubled or more than doubled. States such as Mississippi, Tennessee and Connecticut showed gains of 90% or more. The government data shows that there are approximately 330,000 students classified with the disorder by their school district though estimates of the true rates are higher.

Click Image For Larger Graph of Change In Autism Rate By State

The Individuals With Disabilities Education Act Data Accountability Center (Published 2010)

Federal data pegs the costs of educating a student with the condition at $18,800 a year, roughly three times as much as a child without autism. These figures are likely out-of-date since they were from the 1999-2000 school year and were contained in a 2005 GAO report.

Not only was there a huge jump in the number of autistic students, but the variations in the percentage of students with the disorder varied widely from state to state. Minnesota, for one, says its autism rate was .99% of all students among 6 to 21 year olds, the highest reported of any state for the 2008-2009 school year. Iowa was the lowest at .11%. Both states say there are reasons for their rankings.

“Consistent with the dramatic increases observed in every state, the Minnesota Child Count for this age group in this category, increased over the past 10 years,” writes Christine Dufour, a spokeswoman for the Minnesota Department of Education, in an email. “Yet, the true rate for Minnesota is unknown. There has never been a true prevalence study conducted here. …. There are several reasons why it is difficult to make comparisons to other states’ identification rates: Every state has established a different criteria for eligibility under the Autism Spectrum Disorder (ASD) category, so some differences should be expected. Some states criteria are more strict and others more inclusive. For example, Minnesota specifically includes individuals with Asperger’s in its ASD criteria and some states do not.”

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

U.S. Office of Special Education Programs (Published 2010)

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.