By Anne Dachel
‘Should the Needs of Many Outweigh the Needs of the Few?’
About.com autism blogger Lisa Jo Rudy posed several questions on her blog recently that should have us all concerned. The first one was on November 14, 2010,
(Part One Should Normalcy Be our Goal? and then on Tuesday, November 16, 2010, came the second, Part 2.
Lisa Jo had two areas where she questioned the rights of the minority—one very closely tied to the rising cost of autism in our schools and one involving one of the most heated controversy in medicine today. Lisa Jo wrote, “In a world of limited resources and societal needs, logic dictates that the needs of the many should outweigh the needs of the few. But because our world is NOT logical, but instead is variously self-interested, compassionate and personal, the needs of the few (or the one) very often seem to outweigh the needs the many. Autism raises this issue over and over again, in many different ways - challenging our values, our expectations and our limits.”
She then went on to describe the huge costs of educating an autistic child, involving many more dollars per child. Is it fair that disabled students receive far more funds than ordinary students do?
Secondly, Lisa Jo tied this idea to growing number of parents who question vaccine safety and are opting out of vaccinating their children. Should parental rights take precedence even if by not vaccinating their children, they’re purported to pose a threat to “herd immunity”?
Lisa Jo wrote, “In the larger community, many families are convinced that vaccines are a major cause of an autism epidemic. This is the case despite reassurances from virtually all major medical institutions in the United States that there is no connection. As a result, many families are choosing not to vaccinate their children. According to medical authorities, it is critically important that a large majority of children are vaccinated for potentially injurious or deadly diseases in order to provide ‘herd immunity;’ too few, and those who are vaccinated may not receive sufficient protection. Yet parents are concerned that their choice to support the needs of the ‘herd’ could have a negative impact on the one (their own child).”
Lisa Jo, to her credit, asked this in two ways. She questioned the right of people to exempt at the expense of herd and at the same time she acknowledged that parents who vaccinate for the good of the herd could potentially have a child negatively impacted by the vaccines.
(I have to say that I strongly disagree that we should be reassured by Lisa Jo’s comment that “virtually all major medical institutions in the United States” deny a link between vaccines and autism. Seriously, Lisa Jo, have you ever looked at the vast web of pharma ties everywhere in the medical industry? Do you really think that the Centers for Disease Control and Prevention, the American Academy of Pediatrics or any major medical institution is going to suddenly announce that they’ve been damaging the health of our children by exposing them to more and more untested and unsafe toxic vaccines?)
Regardless, these questions are going to be asked more and more. First of all, doctors like Paul Offit are ranting about the potential loss of herd immunity as more and more parents learn about the hidden dangers in the ever-expanding vaccination schedule. They’re hearing about Hannah Poling, a young GA girl who regressed into autism after receiving nine vaccinations in one doctor’s visit (not unusual). It’s hardly reassuring that while health officials have no idea why one percent of our children have autism, they’re sure it’s not because of their vaccine schedule.
Personal, conscientious, or philosophical exemptions (whichever you want to call it) are allowed in a number of states. It’s easy to do. Just sign the back of the vaccine requirement card.
It’s seen as a personal right of a parent to say what can be injected into their child.
But many question the right of a parent to exercise this right. By not vaccinating, they say, these parents are putting other children at risk of contracting a disease.
The other question is one that’s going to have deep implications in the not-too-distant future. Right now it involves schools. Autistic kids cost a lot more to educate and with almost a million of these students in the U.S., all schools are struggling to provide a free and appropriate education. These costs show no signs of abating. So what will school officials do when the special ed costs are so bankrupting that to provide for them, they have to reduce funding for the regular ed classrooms? How will general education parents react?
The mounting cost of autism
Proof of just how serious this is comes from CA. On November 12, 2010, ABC 7 in San Francisco ran this story with a video, Special ed students could bankrupt districts (HERE) That title wasn’t an exaggeration. Costs are skyrocketing and while the federal government mandates services for disabled students, they don’t pay all of their share. This real issue here is autism as ABC 7 reported,
“The budget problems facing schools across California are getting even worse. There has been a dramatic increase in the number of special education students in recent years and the added cost of teaching them could bankrupt some school districts.
‘In 2002, our unfunded special ed costs were about $170,000, this school year it's $3,200,000,’ district spokesperson Deborah Toups said.
“The Franklin-McKinley School District in San Jose says if the trend continues it will bankrupt districts.
“As a result, more money is being taken from the general fund. And districts admit, because the federal funds are not there, not everyone is implementing these special education services effectively, so many parents like LaPides opt for non-public schools which are privately operated.”
“Parents and school districts agree as the number of children with autism increases, Congress must come to terms with the fact that the demand for more services will drain school budgets even more.”
Nowhere in the report from ABC 7 were we told why autism is increasing. It seems we’re just supposed to accept that autism happens and the schools must deal with the numbers.
On November 14, 2010, the Santa Clarita CA Signal had this story, Funding shortfalls plague special education (HERE)
Under “Increasing need,” we were told, “The biggest growth in special-needs students in the Santa Clarita Valley and statewide has been among those diagnosed with autism.”
Not to worry however, because the Signal assured us that the soaring increase can be explained. One local educator said,
“‘The medical profession is doing more and more to save babies who would not have survived 30 years ago.’
“In addition, parents are generally more aware and involved in their students’ learning than were parents decades ago…
“In December 2009, the valley had 758 students with autism, a big jump from the 214 students with autism in 2002, according to figures from the Santa Clarita Valley Special Education Local Plan Area.”
Families may also be moving to the area because of the services Santa Clarita provides. The gist of the story was that all the autism can be easily explained.
On November 16, 2010 CBS 2 News in New York had this video, NYS Board Of Regents Strikes Down Autism Mandates (HERE). Those mandates included required daily speech therapy for autistic children in New York schools. Suddenly, the help is gone.
Autism funding stories like these are constantly in the news. One recent one from Michigan is very enlightening. November 16, 2010, the Sentinel in Holland, MI had this editorial,
“Mandating insurers to cover autism would be a costly mistake.” The unnamed “guest” editorial writer wrote this,
“The House legislation would require that all health insurance policies cover treatment for autism. The policies would have to offer coverage with dollar limits, co-pays and deductibles that are identical to coverage for physical illness, with the exception of a treatment called applied behavior analysis, which would be limited to $50,000 per year. But there could be limits on how many times an insured person could visit an autism treatment provider.
“Obviously, this could be an extremely expensive mandate.”
We were told about why MI shouldn’t pass this. The concern was over saving money, not over autism. Autism was never really talked about. I never stop wondering when the public will ask whywe’re always talking about children when the subject is autism. Articles about autistic adults are rare, certainly nothing in comparison to those about autistic children.
I’m always amazed that no one is alarmed about all these special needs kids and where they’re going to end up someday. The simple fact that children like this weren’t around 25 years ago should have everyone demanding to know why. For years officials at the Centers for Disease and Prevention have pretended that it was acceptable to have a soaring rate for autism. It was all supposed to be due to doctors suddenly waking up to the autism that’s always been here, just unrecognized. Their pet phrase was “better diagnosing.” They coudn’t wait to announce their latest find on the endless search for the genetic cause of autism.
Now that the rate has reached one percent of children, almost two percent of boys, even the CDC can’t continue to claim that nothing is wrong. Now they’re reluctantly admitting that some of the increase (no one knows for sure how much) is due to environmental causes. No one has a clue what the trigger/triggers might be—there are just too many toxic chemicals kids are being exposed to currently to know for sure.
I’ll take that a step forward and ask what the future holds as more and more autistic children age into adulthood and eventually need to be cared for at the taxpayers’ expense. No one ever wants to talk about this critical issue. Many experts who until recently denied that there were more children with autism today than there were 50 or 100 years ago, are now acknowledging that that there is a real increase in the number. They’re still clueless as to what in the environmental trigger might be. Nonetheless, no one is worried about the future. And no one is preparing for the future either. This is why I’m very sure that health officials will still be scratching their collective heads over autism as hundreds of thousands of these children turn into adults with no place to go. I’m pretty sure it’ll fall to the states to deal with this disaster.
All of these stories show that the autism community has been right all along, despite years of denials from health officials and the medical community. Autism is a devastating, new condition and no one is doing anything to stop it. The whole idea that hundreds of thousands of autistic Americans will be entering adulthood and that no one seems concerned leaves me scared to death. I’ve never heard a single federal health official ever talk about what we’re going to do for adults with autism.
Dr. Paul Offit, the vaccine inventor who’s spent years in the limelight telling us autism is nothing new, is never asked why no one has been able to show us a significant population of autistic adults. And by that I don’t mean the Temple Grandins of the world. I want to see adults who display the same signs of full-blown autism like we see in hundreds of thousands of our children. These kids are everywhere. So where are the 40, 60, and 80 year olds just like them?
And if we can’t find them, then we really have a problem on our hands.
(And please don’t anyone tell me that kids will outgrow their symptoms. I now personally know far too many people with autism who are leaving high school and their symptoms show no signs of going away.)
This brings me back to Lisa Jo’s original question about funding regular ed or special ed. To many autism parents, that is a scary topic. Is the issue, Who is more deserving of funding? Will there come a time in a depressed economy when we’ll have to choose?
The costly needs of hundreds of thousands of autism spectrum kids aren’t going away. In fact, we’re barely begun paying for autism. The real cost will soon be upon us as these kids enter adulthood. Right now, most of their support and care comes from their families and it’s shocking to hear about the thousands of dollars in annual costs per child. For lifetime care, the amount will be in the millions---for each individual. Dr. Thomas Insel, head of the National Institute of Mental Health, announced this past year at the National Institutes of Health, (HERE), that eighty percent of Americans with autism are under the age of 18.
Lisa Jo’s question about serving either the educational needs of the many or the costly few isn’t going away, only it’s going to be expanded beyond just school costs. Since children will naturally become adults, does anyone think this presents a problem? From the coverage it’s been given, you wouldn’t think so.
Consider these stories:
Back in May, 2010, the Washington Post had this story: (HERE)
Fairfax: Autism, not 'baby boomers,' biggest future health challenge. “The wave of aging ‘baby boomers’ needing public health services in Northern Virginia -- once thought to be the greatest healthcare and fiscal threat facing local governments in the coming decades -- will be far outnumbered by the skyrocketing percentage of young adults with autism diagnoses Local government officials are worried about the number of autistic students in VA schools and what this mean for the future. “The county's 65-and-older population will reach 138,000 by 2020, but that the population of young adults with autism is growing at a far faster rate.”
This is the kind of story that should be talked about in Washington and Atlanta. Elected officials and health experts should be making plans to care for a generation of autistic adults. Sadly, they’re not.
Autism is coming.
We’re all so used to hearing about kids with autism. Their stories are everywhere. Search Google News for “autism” and you’ll find lots of innocuous articles about bowling for autism, fund raising walks for autism, and reports about the latest research on the elusive autism gene/genes. These are pieces I call “feel good stories about autism.” They lull the public into thinking that experts are working diligently to unravel the autism mystery and that the needs of autistic individuals are being met. Neither of course is actually happening in the real world.
As the autism tsunami approaches, the economy is facing huge challenges.
This editorial from Ann Arbor, MI by State Rep Kathy Angerer reveals what the crisis is like for her state: (HERE) “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.”
“Early intervention allows more children to function independently as they reach adulthood, which would save the state an average of $2 million over the life of each child with autism. This will allow many to secure employment and live independently as adults instead of relying on state and federal programs like job training, Medicaid, and adult day care.
“To date, 23 states have passed autism coverage reform legislation. Leaders across the country are recognizing and correcting the injustice of denying coverage to children and families affected by autism.”
As scary as hearing that in five years there are 5,000 more autistic children in MI is not seeing any explanation for the increase. What if there are 7,000 more children in another five years?
Finally USA TODAY reminded us about another tsunami approaching….Monday, Nov 15, they ran the story Senior boom begins amid economic bust (HERE). It was all about the impact of the retiring post World War II generation. One historian described this group as one "which reversed a long decline in the American birth rate and became ...the single greatest demographic event in U.S. history."
“...As they've moved through the years like a demographic pig in a python, the 77 million Baby Boomers have redefined each stage of life, says Ken Dychtwald, an expert on generational change. And, he predicts, they will change the next stage, too.
“But how will a generation defined by its youthfulness and optimism deal with old age and hard times?
“Raised in affluent times and imbued with high expectations, the first Boomers now face the ironic prospect of longer yet crimped lives. Their homes and savings are worth less than a few years ago, and health care and energy cost more.”
This left me wondering what impact the critical needs of disabled adults with autism would have on social services at the same time retired Americans will have to be provided for. Those young adults will never have worked and paid into Social Security. They won’t have stocks, pensions, 401Ks or IRAs. They won’t have equity in a home. They’ll be totally dependent on the taxpayers, and no one even realizes they’re coming.
Lisa Jo is asking about sharing school funding with autistic students. The question is up in the air. We’re asked for our opinion. It’s conceivable that a lot of people may feel that providing for regular education classes is the most efficient and prudent use of limited resources.
My worst fear is that the main topic of autism will soon concern not services for children, but instead it will be about paying for fulltime care for autistic adults. Will editorials be warning about the cost and urging lawmakers to cut services? Will there be cold, rational choices or will people call for help for the many disabled adults?
I’m always amazed that so few news stories on autism actually acknowledge the depth of suffering and struggle individuals with autism and their families face. We’re forever being told that autism causes a “lack of communication skills and an inability at social interaction.” I’d love to make a list of the kinds of problems autism parents face everyday, all day.
Would there be this kind of haggling over how much we’re willing to do if the problem were some other disability? Imagine calls to limit help for blind or deaf kids. Would the needs of the many be considered more important than making life livable for a child who couldn’t hear or see? That idea conjures up images from a Charles Dickens novel.
We need to remember that autism became an epidemic without any national outcry for answers. We’ve been continually told that what we need is awareness and acceptance for autism. So what will the future hold? Will more and more stories be asking Lisa Jo’s question? And what answer will there be?
Anne Dachel is Media Editor of Age of Autism.