By Anne Dachel
Some people miight be getting worried because so many kids have an autism diagnosis and yet officially, the cause is unknown. The good news is Dr. James Coplan recently had three articles published on the Psychology Today blog all about how we aren’t really in the midst an autism epidemic. Coplan is described as board-certified in general pediatrics, neurodevelopmental disabilities, and developmental-behavioral pediatrics. In addition, he teaches in the medical and nursing schools at the University of Pennsylvania. The articles also announced that Coplan has had “four decades of experience caring for children with special needs and their families.”
The three stories, No autism epidemic - Part One, June 29th
And No autism epidemic - Part 2.
And No autism epidemic - Part 3, July 3rd
All three articles make it clear---having one percent of children with an ASD diagnosis is nothing to worry about because autism has always been around like this.
All the issues surrounding autism aren’t really relevant either because, as Coplan believes, “Most of the fears about the allegedly deleterious effects of mercury, gluten, yeast, immunizations, etc., and many of the claims for dubious ‘therapies’ such as chelation, hyperbaric oxygen, and dietary supplements, are based on the unfounded assertion that we are in the midst of an autism epidemic. Take away that touchstone, and a lot of those fears and claims collapse.”
That’s it in a nutshell---If we can just accept that autism has long been part of the human condition, albeit unrecognized, all the controversies magically disappear.
Coplan gave lots of reasons for his conclusions by explaining why people may mistakenly think autism is on the rise. In Part One, he focused on changes in the Diagnostic and Statistical Manual of the American Psychiatric Association. Coplan explained that since 1980, when autism first made its appearance in the DSM, the definition has continually been expanded to include things like Pervasive Developmental Disorder, Not Otherwise Specified and Asperger’s Syndrome. As Coplan put it, “Each edition of the DSM has cast a broader net, pulling in more children.” He also expects the increase in autism prevalence to continue. Coplan predicted, “As we speak, the DSM-V is under development. Will the DSM-V recognize Nonverbal Learning Disability (NLD) and the Broad Autism Phenotype (BAP) … as part of the autistic spectrum? If so, we can expect another big jump the prevalence of ASD - with no change in incidence.”
In Part Two, No autism epidemic, Coplan expanded on his beliefs about autism. First of all, they’re doing the numbers all wrong. Coplan doesn’t think that we actually know what the rate of autism is. “We don't know the incidence of ASD, because nobody has figured out how to stand in the delivery room and count babies with autism-to-be as they are born (or to count the number of children who regress each year). The next best piece of information would be prevalence: the percent of children who already have ASD. The correct way to determine prevalence is to test all children by standardized methods, making sure that all examiners are adhering to the same techniques and criteria for classifying the results. Or, if testing all children is too big a job, then we need to test a large, random sample of the entire pediatric population.”
Right now, all we’re doing is looking at the number of children receiving services for autism. As Coplan put it, “Service numbers are a poor substitute for population-based prevalence data, and they tell us almost nothing about incidence.” In other words, just because lots more children are receiving services for autism, doesn’t mean more kids have autism.
Coplan made the claim that parents may just be more aware of the disorder. There are more facilities for autism out there now. “Perhaps there are simply more diagnostic resources than before. The presence of specialists drives up the rate of specialty procedures. We know, for example, that the more plastic surgeons there are per capita, the higher the rate of plastic surgical procedures. In a similar fashion, if more diagnostic facilities for ASD are established, then the number of identified children will probably rise! This is not necessarily a bad thing, but it boosts service figures irrespective of true prevalence (or incidence) of ASD.”
He evens charged that parents and school districts might be making phony autism claims to access services. “Service data can never tell us how much of the ‘explosion’ is bogus, because parents or school districts are gaming the system in order to access funds that have been earmarked for children with ASD.”
Coplan is a firm believer in “better diagnosing” too. “Prior to 1990, kids with ASD were routinely labeled something else: ‘Emotionally Disturbed,’ ‘Other Health Impaired,’ ‘Mentally Retarded,’ or one of the other federally recognized categories of disability.” (If Coplan has been in pediatrics for forty years, he must be culpable too. He doesn’t tell us about any of autistic kids he missed.)
He also focused on changes in requirements for special education. According to Coplan, the Individuals with Disabilities Education Act of 1990 meant that schools could no longer discriminate against the disabled. IDEA may be behind the numbers because, as Coplan pointed out, “The ‘explosion’ in service data for autism coincides with the passage of IDEA.”
Despite these assurances from Coplan that we’ve always had one percent of children with autism, he doesn’t note this:
When the autism rate went from one in 150 to one in every 110 children this past December, that new number represented a 50% in autism for children born in 1996 compared to children born in 1994. Even health officials from the Centers for Disease Control and Prevention had to admit that an increase of that proportion in two years could not be accounted for with claims of better diagnosing or expanded spectrum. As Safeminds pointed out, “The children born in 1994 and in 1996 were diagnosed under the same version of the Diagnostic and Statistical Manual (DSM IV).” HERE Therefore, the claim that DSM changes account for the soaring increase, just doesn’t work.
Finally in Part Three, Coplan tackled something I’m always talking about: Where are the adults with autism? He had an answer for this too. Coplan cited the British study from last year that used a survey that found 19 autistic individuals aged 16 and older. Coplan described it as “a random sample, door-to-door study of all households in the country, using standard diagnostic tools, to determine the prevalence of ASD among adults. (Autism Spectrum Disorders in adults living in households throughout England.”
“When we look closely at adults, using today's diagnostic standards, we have proof that the prevalence of ASD was at least as high 70 years ago as it is today. Not only is there no proof of an epidemic, there is no ‘explosion’ either.”
There you have it. We have nothing to worry about. THERE IS NO EPIDEMIC OF AUTISM BECAUSE ADULTS AS WELL AS CHILDREN EVERYWHERE ARE EQUALLY AFFECTED BY AUTISM.
I noticed that he didn’t mention any of the criticism that this survey engendered.
That criticism would include the fact this survey found only 19 high functioning/Asperger’s individuals—people who could response to statements like:
- I find it easy to make new friends.
- I would rather go to a party than the library.
- I particularly enjoy reading fiction.
- I prefer to do things the same way over and over again.
- I like to collect information about categories of things (e.g. types of cars, types of birds, types of trains….)
Respondents could choose one of the following:
- Definitely agree
- Slightly agree
- Slightly disagree
- Definitely disagree
Based on a sampling that could involve only pretty high functioning individuals, we’re to believe that the autism rate is the same for adults as well as children.
The whole idea of an autism survey is absurd. I know far too many children and teenagers with autism who don’t have a clue what the library is or what the word fiction means. I’m talking about young people in need of constant supervision because they wander away and are a danger to themselves and to others. These are kids still in diapers as teenagers. They don’t speak but they’ll run in circles for hours and endlessly bang holes in the walls. These kids have serious health problems accompanying their autism like bowel disorders and seizures. Many of them were once happy, interacting, normally progressing toddlers who lost learned skills and regressed into autism.
Doctors like Coplan could end the debate by finding even a fraction of the adult population with full-blown autism like the children I described. Where exactly are the thirty, fifty, and seventy year olds who display the same signs of classic autism that we see in our children? Until research can clearly show us these misdiagnosed adults that Coplan says exist, no one can legitimately make the claim that there’s been no real increase. Phony surveys only create more anger and suspicion.
I’m interested in how Coplan would explain what Dr. Thomas Insel had to say in a talk given at the National Institutes of Health this past spring. HERE Insel doesn’t accept Coplan’s belief about no real increase. He talked about autism as "a huge wave that is moving through the system.” Insel pointed out that back when he was starting in medicine, he never heard about autism. (And as someone who’s both director of the National Institute of Mental Health and chairman of the Interagency Autism Coordinating Committee, Insel would be able to say if all the autism is really better diagnosing---but he didn’t.) Furthermore he added, "Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen."
And although Coplan wouldn’t agree it’s going to be necessary, Insel made that stunning statement that we need to “prepare the nation for million people who may need
significant [adult] services.” It’s hard to imagine that someone in Insel’s position could be so misled about the autism numbers.
And back in December 2009, at MIT, Insel also stated that the increase is real and that there have to be environmental triggers to explain it. HERE
Also in December, Insel also made this comment about the rate of autism: "As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected." He said better diagnosing and expanded spectrum,"don't really explain away this huge increase" and that "you really have to take this (increase) very seriously -- from everything they are looking at, this is not something that can be explained away by methodology, by diagnosis."
And what about what was said at the CA State Senate Autism Committee press conference in April, 2009? This was one of the scariest things I’ve ever watched. State officials made comments like:
"Autism is epidemic in this state as it is throughout the country."
"The autism population is skewed dramatically toward young children."
"Eight-four percent of the autism population is under the age of 21."
"More six and seven year olds [are] in the system than all the adults with autism combined.”
"[There were] fourteen thousand students with autism [in California ] a decade ago… and forty-six thousand students today, and growing."
I can’t imagine that all this is based on unfounded science. If these people have always been in the system, why is the government of California so worried?
As many people are aware, I write on the autism numbers and services all the time.
When I found the Psychology Today stories by James Coplan, I also looked through a number of news articles that have come out recently. Here’s a sampling. Does the Coplan’s view of autism make any sense in light of these stories?
PRESS RELEASE June 7 New York Public Schools Challenged to Serve More Students with Autism Despite Budget Cuts HERE
School districts across the U.S. struggle with the combination of two harsh realities: an increasing intensity of budget cuts for 2010-11, and complying with the federal Individuals with Disabilities Education Act (IDEA) which guarantees "free appropriate" education to all disabled students including the growing number of students with an Autism Spectrum Disorder (ASD). In addition, parents are pressuring schools to either comply with the IDEA or face legal action.
“...There may be no greater challenge facing public schools today than the staggering increase in children diagnosed with autism," writes Fran Smith(1), a contributing editor at Edutopia.org, a website published by The George Lucas Educational Foundation.
“...An estimated 637,000 children ages 3-17 in the U.S. (or 1 in 91) had a current ASD diagnosis in 2007 according to a widely accepted study(3) published in the October 5, 2010 issue of Pediatrics. That represents a 67% increase from a previous estimate from the Autism and Developmental Disabilities Monitoring (ADDM) Network, which reported autism rates of 66 per 10,000 children (or 1 in 150) in 2002.”
IL Schools adapt to autism increase HERE.
“Educators across the U.S. must adapt to an increasing number of students with autism.”
MI Unique [Autism] High School Opening in Ann Arbor HERE
WI Special autism school set to open this fall HERE
“Common Threads is a family resource center in McFarland that offers support and direction for families dealing with autism. Soon, it will be a full-time school.”
TX Two autism classes added Teachers warned of greater need HERE
"With autism on the rise, the Wichita Falls Independent School District will add two new autism classes this fall to serve children in its lower grades.
“One new class will serve exclusively 4-year-old children with autism; a second class will serve as a transitional kindergarten class, created for children who have completed the district's 4-year-old preschool autism class but aren't quite ready to make the leap to a regular education kindergarten class.
“...The rise in autism is a trend in other school districts as well. …Many districts have added staff members to cope with larger numbers of special education children.
“...In past generations, an autistic child was diagnosed once in 10,000 students. …Today, autism shows up in once in every 100 children.”
FL Autism Center planning K-12 school? WALA-TV FOX10 HERE
“Autism Pensacola Inc. filed a Letter of Intent with the Escambia School District on June 1, 2010 to begin the process of creating Autism Pensacola Charter School for children with autism in grades K-8 and eventually K-12.”
AZ Schools must have autism training HERE
“The solution is training. Professional development must be provided to all staff members so they can learn exactly what autism is and understand how to work effectively with these children.”
CA Autistic students' parents air lament HERE
“A group of parents and advocates concerned with the education of autistic students say they will not stop until they are satisfied with the educational options available to their children.
“Seven of them spoke to the Redlands Unified School District Board of Education at its final meeting of the school year. They said the district fails to provide an adequate educational environment for middle and high school students who have the neurological disorder.”
This is where Coplan’s arguments really fall apart. If these kids were always here, what did we do with them? Why is there such an acute need for services? Why are we building schools and having to train teachers? It surely isn’t just on account of the better recognition. Regardless of what we used to call autistic kids, we still would have had to provide for their needs. I’ve been writing about the critical lack of services for several years now, citing endless news stories. None of the articles talk about how we provided for autistic kids a generation ago.
The British adult autism survey was heralded all over the press in Britain and it was used to once again try and disprove a link between the MMR and autism. (See Guardian story:http://www.guardian.co.uk/society/2009/sep/22/autism-rate-mmr-vaccine)
What I found most interesting in Coplan’s stories was the acknowledgement that if we can just make the epidemic go away, the claim that vaccines cause autism is also moot. That’s what he does by trying to pretend that kids have always been unable to talk, to develop normally, to communicate. But Coplan’s arguments just don’t work in the real world.
And I couldn’t help but notice the pharmaceutical ads along side the story. The prescription drugs Dexilant, Intuniv, and Cymbalta were featured along with a Merck ad for four teen/preteen vaccines. Coplan’s claims really make sense when you consider the overriding influence of the pharmaceutical industry everywhere.
Anne Dachel is Media Editor for Age of Autism.