Autism: “Who’s Going to Care for Him?” or “A Tidal Wave is Coming.”
Posted Feb 01 2010 12:00am
By Anne Dachel
On Friday, Jan 22, I started out reading a piece on Lisa Jo Rudy’s autism blog. The title was Autism Epidemic! ...Or Not? (HERE) It was easy to predict what I’d find there. Even though autism is now a household word and everyone knows someone with an autistic child, Rudy and others are still scratching their heads over what that really represents. Did we just mislabel these kids in the past or do more kids actually have autism? Rudy does make it clear that if the increase is real, genes alone can’t be responsible since there’s never been a genetic epidemic in human history. There would have to be an environmental trigger. Or as Rudy put it, “Logically, something in our environment is causing an epidemic - and that something must be discovered and ended.” This of course brings up the claim that the “something in our environment” involves the ever-expanding vaccine schedule. It’s the one common factor that so many thousands of parents and more and more doctors and scientists point to.
While officials are adamant in saying that vaccines don’t cause autism, they can’t give us any other environmental factor as a possible trigger. Furthermore, if a true increase in autism is admitted, spending millions looking for those elusive genes that cause autism would definitely be seen as a colossal waste of time and money.
The most recent example of autism gene research making the news was on Jan 22 from the Reporter, Vanderbilt University Medical Center’s Weekly Newspaper (HERE)The title was Investigators seek to trace autism’s genetic architecture and the article was devoted to telling us about how $17 million in NIMH funding is being spent on the search. Lead Vanderbilt researcher, James Sutcliffe is studying genetic mutations involved in autism. I couldn’t find any reference to autism being a tragedy overwhelming a generation of children and Sutcliffe used words like ‘absolutely fascinating’ when describing the challenge he faces. There was no mention of an environmental factor at play here or any sense of urgency in finding answers. In fact, we’re told they have 1,000 different genes to go through in their research and Sutcliffe left us with the warning, “This is one step in a long story.”
Sutcliffe must feel like he’s got all the time in the world to look for autism answers because he made no reference to the staggering increase in the number of affected children. In fact, the Vanderbilt piece gave us an autism rate of one in 150. It seems that the cutting edge researchers on autism haven’t heard that the numbers have been updated to include one percent of U.S. children.
Meanwhile in the real world where we all live, autism is getting new attention. It’s becoming a concern because we’re starting to think about what’s going to happen when we have autistic adults everywhere and about what that will cost. For years, we’ve heard about children with autism flooding our schools and their need for services. Rarely has anyone been alarmed. Most of all, we haven’t heard projections about what it will mean when the children with autism became adults, dependent on the welfare system for their support and care. Our health care officials have led us to believe that any new autistic adults would go where autistic adults have always gone—wherever that is. The word CRISIS has never been used by any official whenever the Centers for Disease Control and Prevention has given us the latest, ever-increasing autism rate. We have been continually reminded that all this autism is being brought to us because of “better diagnosing” by the medical community.
Slowly, that’s changing. We now have a growing number of people in their twenties with autism and they have an acute need for services. We’re waking up to the fact that we have nothing to offer them. It seems we’re beginning to realize the real scope of this disaster and it’s obvious we don’t have years to look for defective genes to blame .
Major news outlets are starting to talk. Recently I saw amazing reports on this topic. Channel 4 in Pittsburgh had a week of autism coverage, and while they could give us no reason for the increase, they sounded very concerned about the number of autistic children we have today.
Jan 20--As Autism Cases Rise, So Do CostsThe Pittsburgh Channel “Some 25,000 people in Pennsylvania have an autism diagnosis. . . . the cost for each person with autism is $3.2 million over a lifetime.”
Jan 21--Autistic Children Change Families' LivesThe Pittsburgh Channel " ‘There isn't a second of a day, ever, that autism isn't there. I mean, autism is there constantly. I mean, it's like a pall that hangs over you 24 hours a day,’ Mark Wallace, Matthew's father, said.”
" ‘It can be tough sometimes. It's hard not to hear him screaming about things that aren't going his way or going right or are out of his control. But it can be OK sometimes. He's very playful and fun,’ Seiff said.”
" ‘He's going to always need supervision. But he's staying with me until I die,’ Barbara Wallace said. ‘My fear is what happens when I die? Who's going to care for him?’ "
Jan 22--Lack Of Facilities Poses Challenges For Autistic Adults The Pittsburgh Channel “The shortage includes everything from daycare to a permanent residence for adults with autism.”
“More than half of those diagnosed with autism -- 54 percent -- are in elementary school.”
Most frightening was this news video on autistic adults:The Pittsburgh Channel In it we heard: “Lack of adult services includes every aspect…day care, work place and even a permanent residence for them.”
A father of an autistic 17 year old calls the prospects for the future, “terrifying.”
“Dr. John McGonigle says a tidal wave is coming."
The mother of a teenager with autism asks for answers: "There are not enough places. I'm not a residential treatment facility basher. What I'm saying is this -- there are going to be millions of children throughout the United States with autism diagnosed with other disabilities. What are we going to do with them? Where are we going? What about the quality of care for the children?'"
And on Friday, January 29, the Pittsburgh Business Times ran the story, Allegheny County Seeks Autism Therapy Providers. The business sector seems to be paying attention to autism. Certainly there’s a demand for workers to address the needs of so many disabled individuals who weren’t here in the past. The Pittsburgh Business Times announced, “Rising demand sparks need for more [therapy providers]” as a subtitle. I should be used to it by now, but reading shocking information like this simply amazes me. How bad will the numbers have to get before we do something?
“Autism is a group of developmental disorders that affect communication and social skills. In 2005, there were 19,862 people with autism in Pennsylvania, and the number was expected to reach at least 25,000 this year, according to a state Department of Public Welfare survey that was released in October. Most of the people with autism were between the ages of 5 and 12.
“Allegheny County led the state in number of autism cases at 2,235 in the survey, followed by Philadelphia’s 2,142 and Montgomery County’s 1,109. Autism treatment costs last year in Allegheny County alone totaled $30 million.”
There is something fundamentally wrong when the media can give us such frightening information with absolutely no explanation.
Another news source raising serious concerns about autism was, of all places, the New York Times. I really am stunned at the latest Times coverage, especially considering how they reported on the updated rate for autism on Dec 18, 2009. In Study Finds Increased Prevalence of Autism (HERE), the Times talked about this as if having one percent of children with autism wasn’t anything to worry about. Reporter Benedict Carey cited Catherine Rice of the CDC who merely said, ‘A simple explanation is not apparent, and a true increase in risk cannot be ruled out.’
Carey also wrote, “Prevalence estimates for these disorders have increased so sharply in recent years — to 1 in 150 in 2007, from 1 in 300 in the early 2000s — that scientists have debated whether in fact the disorder is more common, or diagnosed more often as a result of higher awareness.”
Carey neatly ignored the reality that in the 1970s, autism affected one in 10,000 children and most Americans had never heard of the disorder. He also included comments like “Prevalence estimates vary depending on how studies are done” and “Almost 40 percent of the children who had received an autism spectrum diagnosis grew out of it or no longer had the diagnosis.” All this sounded like officials aren’t certain there really is more autism.
Carey gave us lots of reasons not to panic about the latest autism numbers and we certainly didn’t hear from any experts or officials who were worried.
Then on Jan 22, the NY Times published a piece by Walecia Konrad, Dealing With the Financial Burden of Autism (HERE). This story was about the cost of autism and Konrad didn’t tell us not to worry. She included Jeff Sell, vice president of the Autism Society of America and the father of twin sons with autism. Sell described having to navigate through the funding provided by insurance coverage and Medicaid for services for his sons.
The Times reported that the cost of treatment for one child with autism can run from $67,000 to $72,000 a year, according to a Harvard study. It was noted that this same study (actually published in 2006) predicted that the lifetime cost of care for one person with autism would be $3.2 million. This is rarely talked about in the press but it’s something to consider, especially with the knowledge that one in every 110 children, one in every 70 boys has autism
What really surprised me about the Times piece was the inclusion of comments made by Pat Kemp, executive vice president of the advocacy group Autism Speaks. Kemp was allowed to voice grave concerns about autism. He was quoted saying, ‘The numbers are just amazing. Unless we attack this like a national health crisis, we’re going to have an economic crisis on our hands.’
Jeff Sell’s sons are 15. Where will they be in five years, along with thousands and thousands of other young adults just like them? Somehow we’re going to have to come up with answers. For years, officials have refused to aggressively and honestly address the cause of autism. There haven’t been demands for answers. I see that changing when the need to know the cause of autism is tied to the devastating cost of autism.
Personally, I’ll want an explanation from all those people who assured us that autism was nothing to worry about and told us that parents just need to recognize the signs earlier. I’ll want members of the media to go to the experts who’ve long claimed that autism isn’t on the rise and ask them why they lied. All those doctors and scientists who pretended autism has always been around should be the first people we turn to. Paul Offit and Julie Gerberding along with so many others will need to explain why we’re so unprepared for the tidal wave of adults with autism about to descend on us.