While I’m not an expert on economics or politics, I’m getting a pretty clear idea of what the future will be like for autism in America. Consider that no U.S. health official has expressed alarm over the fact that one percent of our children have an ASD diagnosis. They have never used the word CRISIS when speaking about autism. And most frightening of all is the fact that no one makes any projections about what it’ll be like in this country when one percent of young adults also have some degree of autism.
We hear calls for awareness, acceptance, and early intervention when it comes to autism but there’s never a universal demand to find out what’s happening to hundreds of thousands of our children. Experts at the Centers for Disease Control and Prevention and the American Academy of Pediatrics have spent years telling the public that it’s normal and acceptable to have a child suddenly lose learned skills around age two and regress into autism. They can’t tell us why this happens and most often they speak of autism as a MYSTERY. Officials are unashamed when they continually announce: THE CAUSE OF AUTISM IS UNKNOWN, while ignoring peer-reviewed studies which report important associations.
Those in charge of health care seem determined to downplay any real concern over autism. The rate in the last few years went from one in 500 in the year 2000, followed rapidly by one in 166 in 2004, and one in 150 in 2007 and finally one in 110 two years later. (One in 110 isn’t exactly the “current” number since it’s based on studies of eight years olds in 2006.) Incredibly, during the successive increases, experts continued to take credit for the ever-expanding number of kids with autism. The often-repeated phrase, “better diagnosing” was intended to convince us that doctors were finally recognizing an age-old condition. Plus, more kids are called autistic today because the definition of autism was expanded to take in less severe forms of the disorder. Unfortunately, while officials were giving doctors all the credit, no one wanted to prove this theory by finding a comparable autistic population among adults—people who were misdiagnosed in the past—but who clearly show the symptoms of autism we see in our children, especially the undeniable signs of classic autism.
With the last leap from one in 150 children to one in 110 as announced in December 2009, even the CDC had to acknowledge that something new is happening to a growing number of kids. Yes, officials now admit, autism is on the increase—but they don’t know how much of the increase is real and how much continues be better doctoring. And no one is moving mountains to find the answer either. Millions of dollars are still going into the search for the genes that cause kids to suddenly stop talking, making eye contact, and end up with bowel disease and seizures as well as autism.
I can’t see this changing anytime soon. I fully expect that if someone found the rate was now one in every 75 children in the U.S., the head of the CDC would quickly reassure the public that it was still not a crisis. If it were, it would naturally follow that officials would have to know something about the cause, prevention, and about the possibility of a cure for autism. By pretending that they’re looking into autism, the public just has to wait and see what they discover.
The game of covering up the real impact of autism is only going to work for a little while longer. The numbers are simply too great and the cost too horrific. And with the ineptitude of federal health officials in their dealing with autism, it’s clear that the burden of this disaster will fall on the state governments.
I recently found an article entitled, "Overwhelmed by Autism" by Jennifer B. Saunders in a publication by the National Conference of State Legislatures. The NCSL describes itself as “a bipartisan organization that serves the legislators and staffs of the nation’s 50 states, its commonwealths and territories.” Their focus is on “the most pressing state issues.” In this piece, the first thing we were told was that “a dramatic increase in diagnoses has lawmakers debating the state’s role.” The main issue was the call for state legislatures to mandate insurance coverage for children with autism.
There were a number of scary comments:
“Autism now is more common than juvenile diabetes and childhood cancer.”
“Last year, the Centers for Disease Control and Prevention released data from 2006 estimating that one in 110 children in the United States have autism, or about 730,000 children.”
“This dramatic rise has caused researchers at the Centers for Disease Control to elevate autism to an urgent public health concern.”
“It’s not clear how much is a result of heightened awareness and better diagnoses and how much is a true increase.”
“A Harvard School of Public Health study estimates it costs $3.2 million to care for an autistic person over a lifetime.”
“Families may spend more than $67,000 a year to cover direct medical and nonmedical expenses.”
We heard from people on both sides of the insurance mandate issue. Some expressed real concern over what autism is doing to families.
NY State Senator Charles Fuschillo: ‘Families are literally going broke because their insurance companies won’t cover autism treatments.’
‘As the numbers of children with autism climb, more people will need help. We need to do whatever we can to make their lives better.’
LA State Representative Patrick Williams: ‘It’s important to understand the emotional, physical, and financial strain that autism puts on a family.’
‘We need resources in place now, not 10 years from now. Our medical community, educational community and local-state-federal governments need to understand the effect this is having on our community. We have to work together to combat this disorder.’
MI State Representative Kathy Angerer ‘With treatment, 47 percent [of children with autism] will recover typical function and another 40 percent will achieve significant improvement. Without early diagnosis and treatment, the average cost to the state over the life of a child with autism is more than $2 million.’
The states do feel something must be done. “Between 2006 and 2007, states passed nearly 50 bills….The more than 60 autism-related bills enacted this year range from increasing awareness to appropriating funds for services. This year, eight states passed laws to require insurance companies to cover diagnosis and treatment.”
The federal government may not want to acknowledge that autism is a real life crisis, but the states know it is and that it’s going to get worse. “The cost of providing autism services can be significant. Last year, the Virginia Joint Legislative Audit and Review Commission estimated that more than 11,000 people with autism received assistance—including services in schools under the Individuals with Disabilities Education Act, Medicaid waivers and vocational rehabilitation programs—at a cost of more than $84 million.” Per pupil cost for schools is on average $12,000 MORE PER STUDENT PER YEAR.
The question was raised, do we pay now and increase an individual’s chances of leading a productive life or will we have to deal with the price of total support and care later on? And we were told, “Ultimately, lawmakers must decide how much responsibility state government has to pay for the care for people with autism and how much lies with families, schools, health insurance providers and others.”
In the end, I was left with a sinking feeling as I read through this NCSL story. How long are we going to just accept autism? The number of disabled kids is jaw-dropping. We know that each one of them is going to cost the taxpayers millions, yet legislators are not demanding answers.
I would ask, IF AUTISM HAS ALWAYS BEEN AROUND, ALBEIT MISDIAGNOSED, WHAT DID WE DO WITH THESE KIDS IN THE PAST? Why are there suddenly so many disabled kids who cost us so much? And if one percent of kids have always had these special needs and nothing was done for them, then our record of helping disabled children is a national disgrace.
MI Representative Angerer has been in the news lately calling for insurance coverage for children with autism. In a related article (HERE) she wrote, “Autism affects one in 110 children, and one in 70 boys. When I began serving in the Legislature five years ago, approximately 10,000 children in Michigan had autism. Today, The Michigan Department of Education estimates that autism affects more than 15,000 children.” In the NCSL piece Angerer was quoted saying, ’Regardless of the cause’ [of the increase in cases,] it is imperative that states take immediate action to ensure that families affected by autism can get the help they need.’
‘Regardless of the cause.’
So we shouldn’t care what’s causing it? It’s hard to imagine a similar situation. How about this: What if the day after the Japanese bombed Pearl Harbor, President Roosevelt would have gone before the Congress and declared that regardless of who is responsible for the attack, our main job is to treat the wounded.
It’s almost laughable to say that, yet it’s exactly what we’re doing with autism. When is someone going to declare war on an enemy that has claimed almost a million child victims in this country and shows no signs of retreating?
The NCSL ended with a section on “Vaccine Safety and Autism” in which we were reminded that while some parents may think vaccines can cause autism, they’re wrong. In several paragraphs we’re told about the IOM Report of 2004, Andrew Wakefield’s “misconduct,” the removal of thimerosal (which is still in most influenza vaccines, now recommended for all pregnant women and infants over six months), and how the CDC and the FDA “continue to monitor any reported problems to ensure the highest standard of safety” for vaccines.
In other words, officials have no idea what causes autism, but they’re sure it’s not a result of their ever-expanding vaccination program. .
I’m fully prepared that 10 years from now when the rate is at one in 25, U.S. health officials still won’t know or care what the cause of autism is. I wonder if by then the state governments will be more interested in stopping the epidemic. Or will they be too busy trying to come up with the plans and resources so that hundreds of thousands of adults with autism aren’t in the streets with nowhere to go?
Anne Dachel is Media Editor of Age of Autism.