Today I found a story from April, 2007 that I don't remember ever seeing before. It was written by Kristina Chew and it was a critique of something I had written. Chew is the mother of a son with autism and she's someone who's very outspoken on the subject.
This is the story I found: The Autism "Problem/Crisis/Epidemic/Emergency" (HERE)
Chew focused on one of the issues I'm most outspoken about: We are not prepared for the coming population of adults with autism.
Chew wrote: "Centers for Disease Control and Prevention Director Dr. Julie Gerberding has referred to autism as a 'serious public health problem,' and A-CHAMP and National Autism Association (NAA) member Anne McElroy Dachel takes the title of her April 10th article Autism: A Serious Public Health Problem from Gerberding's words. Dachel is quite concerned with language in this piece, and asks why the CDC has yet to refer to autism as the 'crisis' and even a 'national health threat.' "
Chew included several quotes from my writing. Her main point was that I'm wrong. There's no need to worry about what will happen to all the kids who have an autism diagnosis. She doesn't offer real proof of her claim. She merely says, "And the good thing, as Dachel herself notes, is that we will notice all of these autistic persons; we will see them, unlike the situation for previous generations, whose autism was not apparent, understood, or identified: I just had a conversation with an autistic person from a 'previous wave' yesterday (she lives across the street from us). We are able to see them now because we know what autism is and are able to understand when we see it. "And, provisioned with what we now know, I don't think we will be drowning."
Chew said the same thing that Paul Offit wrote about in Autism False Prophets. (HERE) Offit also has no concerns about the future when all the children with autism become adults. He dismissed the increase in autism by saying we just used to call autistic people 'quirky,' 'different,' or 'unusual.'
Actually, I'm tired of people saying that expanding the spectrum and including high functioning and Asperger's Syndrome accounts for the explosion in the numbers. Why do I personally know so many young people with severe autism, whose symptoms can't be ignored? How could we have just missed these people in the past? Where are those misdiagnosed adults with classic autism---those with the same symptoms we see in so many children today?
I'm not talking about Chew's autistic neighbor who was able to have a conversation with her, or Offit's people who are kind of 'quirky.' I mean adults who can't talk, those in diapers, people who scream for hours and pound hours in walls and who constantly rock back and forth. I also want to see adults like this who once talked as toddlers but who suddenly lost those skills. Neither Offit nor Chew has ever been able to show us those autistic individuals.
Does Chew truly believe that the explosion in the numbers in Maryland can be explained away by saying that autism just wasn't "understand" and wasn't "identified"?
Maryland Jul 10, 2009 Press Release: Governor Martin O'Malley, Speaker Busch Address Maryland Autism Summit. (HERE) 'It's alarming how many more Maryland families face this troubling diagnosis each year only to discover there is so much we as a nation have left undone," said Michael E. Busch, Speaker of the Maryland House of Delegates.
'...Ten years ago, 1,600 Maryland children with autism were being served by Maryland's educational system. Today, that number has grown to 7,500. Yet, it remains unknown just how much of the increase is attributable to better diagnosis and how much to the prevalence of the disorder. Currently, 2,300 students between the ages of 14 and 21 will be "aging out" of the public educational system over the next 5 years.'
Does Chew think that the California numbers are just people whose autism was not "apparent" 20 years ago? (HERE) California State Senate Autism Committee: "There were "14,000 students with autism a decade ago.” Today, “46,000 students and growing."
Kristina Chew received national coverage in Oct 2008 as part of MSNBC's Today Show report on vaccines and autism featuring Nancy Snyderman yelling at Matt Lauer, "It is not controversial Matt!" (HERE) Chew was included saying, "I know that vaccines did not cause my son to become autistic. He was born with autism. He was born the way he is. He's always been a little different. He's not autistic because of a shot." According to her, vaccines don't cause autism and there's been no increase in the rate.
It was almost three years ago that Kristina Chew challenged what I said about autism being an epidemic. In the meantime, what's happening to support or disprove my position?
We are seeing the start of the tsunami. It may only be a few waves at this point, but people are worried about what's happening. They're using the word "crisis" when speaking about autism. These are some of the stories out there that should be sounding an alarm about the explosion in the autism rate and about a generation of disabled adults that no one can explain:
Jan 13, 2010 Autism Speaks again calls upon the federal government
(HERE) "Autism Speaks chief science officer, noted that recent research indicates that a significant amount of the increase in autism prevalence cannot be explained by better, broader or earlier diagnosis and that, 'It is imperative that the federal government, primarily through the National Institutes of Health and CDC, quickly and significantly increase funding for autism research to explore the factors that are contributing to the increase.' "
Baltimore Sun Dec 19, 2009, Autism found in nearly 1% of children (HERE) called autism a "public health crisis'' and said that " '750,000 children are now estimated to have an autism spectrum disorder, and those children will be growing up to be adults and will need services throughout their life span.' "
KING5 TV Seattle Dec 29, 2009, The World Within: Independence for adults with autism (HERE) " 'You know, we spend... the first 21 years of their lives getting our children ready to go out in the community, the reality is right now is our community is not ready for children like Alyssa,'... "
Canada Oct 6, 2009 New findings reinforce the urgency of autism as a major global public health crisis. (HERE) "Autism is an urgent and growing global public health crisis that affects most individuals across their lifespan and demands a commensurate level of action from both the public and private sectors."
WTVG-TV Toledo OH Nov 24, 2009, The number of adults with autism is growing (HERE)
"The numbers are staggering. ...But what happens to those children when they grow up? . . . Experts say people with autism need lifelong support. The growing number of cases means our country will eventually have to fund more services for autistic adults." '.
Pennsylvania Nov 25, 2009 The Pennsylvania Autism Census Project Final Report (HERE)
"According to the study, in 2005 there were close to 20,000 Pennsylvanians living with autism. Given trends, we expect that number to rise to at least 25,000 by 2010.
"The report also illustrates that the number of adults with autism will increase dramatically in the near future, growing by 179% to more than 3,800 in 2010 and to more than 10,000 by 2014."
"Things just aren't getting better, and individuals with autism are growing up. Now we need to include school-aged children, teenagers and young adults in our mental snapshot. The number of autistic children expected to need extensive adult services by 2023 - more than 380,000 people - is roughly equal to the population of Minneapolis. And, the bill for autistic children entering adulthood over the next 15 years is an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period."
Erie, PA Jan 6, 2010 America not ready for autism onslaught (HERE) A letter to the editor from a PA pediatrician: "...Pennsylvania will see a dramatic increase in the number of adults with autism in the near future. In 2005, we counted 1,421 adults with Autism Spectrum Disorders who were 21 years of age or older, just 7.1 percent of the total ASD population in Pennsylvania. We estimate that this number will increase by 179 percent to 3,825 in 2010 and by 621 percent to 10,140 by 2015.
San Diego, CA Jan 7, 2010 Autism numbers go up, autistic children grow up (HERE) "The image of autism is changing. Autism is no longer depicted by the adorable curly haired toddler sitting quietly in the corner, stacking blocks in perfect order, while his peers engage with each other in a whirlwind of interaction and activity. Unfortunately, now, it's time to put a few more toddlers in the corner.
"As a community, state and nation, we must deal with this tidal wave of children, adolescents and adults with autism. Our goal must be to improve the lives of people with ASDs and pursue basic research into the cause or causes of this increase."
Arizona Republic Jan 14, 2010 Children of autism approach adult world (HERE) "The new face of autism is a young adult, trying to carve a place for himself in society.
"In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older."
Please notice that these stories are ones posted since Oct. They're from all over the U.S. They were not hard to find. I have lots more I could add. None of them are talking about the world Kristina Chew described. It isn't that we finally got the name right. As a society, we've never had to deal with people like this. We don't have the programs or accommodations for autistic adults. Most of all, we don't have the money.
Anne Dachel is Media Editor of Age of Autism.