On July 5th, an article in the Boston Globe by Carey Goldberg gave us some frightening information. Although the title, “With rise in autism, programs strained, “didn’t seem too alarming, the facts presented should have gotten everyone’s attention. We were told that as more and more children are being diagnosed with autism, we’re desperately behind in providing services.
Goldberg wrote, “A decade ago, it took a few months to get a child into Melmark New England, a special school largely for children with autism. Now, the wait can be five years. Boston-area parents, worried their child may be autistic, routinely face delays as long as nine months to confirm the diagnosis.”
These waiting lists indicate the explosion in the number of children with autism. “Statewide, the number of schoolchildren diagnosed with autism has nearly doubled over the last five years, from 4,080 to 7,521, according to soon-to-be-published data from the Department of Education.”
A number of experts were cited. Dr. Margaret Bauman, director at LADDERS, a Wellesley autism clinic, noted that LADDERS has had to close their doors to new patients and she stated, “We’re backed up well over a year here, and other clinics are struggling the same way,”
Rita Gardner, executive director of Melmark, in Andover was quoted saying, “Autism programs are faced with enormous needs and no one feels like we have enough programs to meet the up-and-coming numbers of children. I would argue that this is one of our biggest public health crises in this country.”
Rafael Castro, an autism specialist at Children’s Evaluation Center in Newton, told about families relocating in school districts that provide the necessary services.
Psychologist Karen Levine, clinical director of autism at Cambridge Health Alliance commented that there are “many families embroiled in battles with their school systems for more services.”
Why is all this happening?
Goldberg explained, “Nationwide, federal health authorities say that about one in every 150 children now has some form of autism, a sharp increase over past estimates. The rates vary from state to state for unclear reasons; Massachusetts has now reached a total of 1 in every 130 schoolchildren.”
Something affecting one in every 130 schoolchildren should have lots of people seriously concerned. Unfortunately, officials at the Centers for Disease Control and Prevention don’t seem to have taken much notice of the skyrocketing number of children with autism everywhere. While Carey Goldberg noted that health officials can give us the current rate for autism, she didn’t mention what they’re doing about it.
According to the Centers for Disease Control and Prevention, we’ve always had all these disabled kids in need of services, their disorder just wasn’t recognized as autism. The CDC describes all the autism as merely the result of “better diagnosing” and “greater awareness” on the part of doctors and no real cause for concern. It seems that one in every 130 children in Massachusetts has always been autistic. Goldberg touched on the topic when she said, ‘Some debate lingers about whether the sharp rise in autism rates is real or simply reflects better detection.”
Tell that to the countless parents waiting years for services. If these affected children have always been here, what did we do with them? It’s a little hard to miss an autistic child, even a mildly affected one. We would have had to provide help for their special needs even if they didn’t have the label “autistic.”
The Boston Globe article should get people wondering about several huge issues. First of all, why are we always talking about children with autism? The CDC statistics of one in every 150 nationally refers to studies of eight years olds, not eighty year olds. If autism hasn’t increased as officials never tire of telling us, then where are the older adults with autism? Why isn’t there even one study that has been able to find the one in 150 thirty, fifty, and seventy year olds with autism who were misdiagnosed in the past, before all the “better diagnosing” we presently enjoy? Thousands and thousands of parents of autistic children desperate about their future would like to know. Where are they living and what are they doing? No one seems willing to look for them.
What’s going to happen in the future?
One big question looms out there: How we will pay for all these children disabled with autism? Carey Goldberg talked a little about the financial aspects and noted that the costs are ever increasing. “The Legislature is recognizing the need: Starting in fiscal year 2006, it gave the state Division on Autism its own line item in the budget, and in the pending budget, allocates $3.2 million to the division, up from $3 million in the last fiscal year.”
Actually, this is nothing compared to the future cost of autism. Research by Michael Ganz at Harvard makes a chilling prediction of the future cost to our society as more and more autistic kids become autistic adults. Ganz reported, “It can cost about $3.2 million to take care of an autistic person over his or her lifetime. Caring for all people with autism over their lifetimes costs an estimated $35 billion per year.”
The Ganz findings are felt by others to be a gross underestimate of the eventual autism price tag. Research from Lifespire, an organization dedicated to helping individuals with developmental disabilities, puts the eventual estimated lifetime cost for one autistic individual at $10.125 million. This is based on an annual cost of $225,000 per person with a life expectancy of 66 years.
With numbers like these circulating out there, clearly the problems with meeting needs of children with autism will be dwarfed by the enormous burden of providing support and care for an overwhelming number of autistic adults in the next five to ten years as more and more of them age out of childhood.
For a long time I’ve wondered if anyone with a pocket calculator somewhere was adding things up. Every time I’ve tried to come up with figures, I’m simply shocked at what this generation of affected children is going to cost the American taxpayers.
Someone sent me a copy of a letter written last November by the Attorney General of Wisconsin, who at the time was Peggy Lautenschlager. The letter was addressed to U.S. Senator Herb Kohl from Wisconsin. It seems the Attorney General had been reading the newspapers and hearing about the statistics on autism.
Newspapers have occasionally covered the exploding numbers. Several months ago, the Green Bay Press Gazette reported, “Fourteen years ago, Wisconsin school districts identified 200 children in their ranks with autism. Today, there are at least 200 students in the Green Bay School District alone. In December 2005 (the most recent numbers available), DPI identified 5,085 students in the state with an autism spectrum disorder.”
Those figures have got to be getting notice, especially if those numbers are multiplied by the estimates of lifetime care. In her letter to Senator Kohl, Lautenschlager addressed the autism epidemic as an epidemic. “Although some dispute the characterization, in my view it is appropriate to describe the dramatic rise of those diagnosed with autism as an epidemic of fairly recent origin. How else can one explain its prevalence among our children and comparative absence in our adult population?”
Calling autism “an epidemic of fairly recent origin” is a clear sign that Lautenschlager was not swayed by the “better diagnosing” claim of federal health officials. In addition, she urged Kohl to vote for the Combating Autism Act, then under consideration in the Senate.
The Wisconsin Attorney General further told Kohl, “Despite efforts being made in our schools, communities and through private sector and non-profit organizations dedicated to improving the lives of autistic children and their families, as a state and a nation we have failed to address comprehensively the most obvious question this epidemic presents: its cause.”
Lautenschalger pointed to the need to support H.R. 5940, a bill that would require the NIH to conduct a comprehensive study regarding the relationship between vaccines or vaccine components and autism. She was concerned because “that bill also was referred to committee, and has seen no further action.” She wrote, “Action is needed.”
The controversy over vaccines, especially ones with mercury, was definitely a critical factor for Lautenschalger in addressing autism. She wrote, “As Attorney General of Wisconsin, I have sought approval from the Governor to gain the assistance of needed experts and outside counsel to explore legal means of forcing the federal government to undertake the type of testing needed to explain the cause or causes of autism. My request was denied.” Evidently, Wisconsin Governor Jim Doyle didn’t share the Attorney General’s concern over the number of disabled children overwhelming state schools.
Although the U.S. Senate passed the Combating Autism Act by unanimous consent last December, the funding still hasn’t been provided. H.R. 5940 was never acted on and nothing is known concerning how or if Senator Kohl personally responded to Lautenschlager’s letter.
So where is all this leading?
When are elected officials going to start to honestly address autism as a crisis? With autism straining education budgets, how long can we keep pretending that something isn’t seriously wrong with more and more of our children and no one can reasonably tell us why?
I can answer those questions. There won’t be a real demand to find the cause of the explosion in autism until we start to go broke paying for it. Within the next five to ten years, we’ll be seeing these children with autism become adults with autism, dependent on the taxpayers for their support and care. When one in every 150 eighteen year olds in the U.S., including one in every 94 boys, isn’t going on to school, getting a job, or going into the military, but going on disability for life with autism, the reality of this disaster will be obvious to all.
Attorney General Lautenschlager ended her appeal to Senator Kohl by saying, “Nonetheless, I am hopeful that Members of Congress will appreciate the fiscal, societal and medical problems autism presents in our nation, and take immediate steps toward real solutions to these problems. These very special children, their families, and all who have a stake in our future are counting on you.” It seems our legislators have yet to realize the full impact so many disabled children will have on this nation or to understand the extent of the suffering that countless families endure.
Bobbie Manning of A-CHAMP put it this way, “Congress and state legislatures always wait for a catastrophe to occur before they finally realize their ethical and moral responsibility to the public. Even with all news reports, they continue to act like these kids don’t exist, but the tsunami is rapidly approaching. If schools systems are struggling to pay for the services for autistic children today, how will the states, and you the taxpayers, pay for all the adults with autism later? How many more children have to suffer before our Congress investigates and
reacts to this public health disaster? And what will be their excuse for not reacting sooner?”
The words of Laura Bono of the National Autism Association are a grim forecast for the future: “As those children reach adulthood, the U.S. is ill-equipped to care for them. Not only do we not have enough services for adults now, the light at the end of the tunnel is a train. Frankly, we don’t know what we’re going to do.”
Anne McElroy Dachel lives in Chippewa Falls, Wisconsin. She can be reached at: email@example.com