Dr. James Coplan has had several stories published recently on the Psychology Today blog, all intended to convince us that having kids everywhere with autism is nothing to worry about and nothing new.
Making Sense of Autism Spectrum Disorders Part 1
I wrote this piece for Age of Autism, The Invisible Epidemic, July 9, 2010, challenging what Coplan claims. HERE
I also posted a comment on his stories asking him to respond to my questions, which he agreed to do.
These were the questions I asked:
Dr. Coplan, thank you for agreeing to answer my questions concerning your articles claiming that there's been no real increase in autism. Countless thousands of parents in the autism community endure unimaginable hardships trying to find help for their autistic children. These children are bankrupting school systems and they have the potential to devastate social services in the coming years as they age into adulthood. Yet according to your report, there's been no real increase in the incidence of autism.
In my Age of Autism story “The Invisible Epidemic” I asked the following:
How do you account for the endless stories in the news about parents who are desperate for services?
Families are spending thousands of dollars a month on therapy. School districts are building whole schools for autistic students. Teachers and police departments are being trained to deal with autistic individuals.
If autistic kids have always been around, just not recognized, what did we do with them?
Why are people so unfamiliar with autism?
Before the days of IDEA, where did they end up?
Citing changes in the DSM to explain why the rate continues to increase, simply doesn't work. The stunning 50 percent increase from one in 150 to one in 110 for children born in 1996 compared to children born in 1994 happened at a time in which there were no changes to the DSM.
How do you account for this exponential increase?
How can you cite the British survey as proof that autism rates haven't increased when researchers were only able to find five high functioning individuals?
Agreeing with statements like,
I tend to notice the details that others do not.
When I'm reading a story, I find it difficult to work out the characters intentions.
--might only ferret out people who are socially inept, possibly the highest functioning on the spectrum.
How can this be used as proof that people have always been flapping their hands, walking in circles, and growing up unable to talk?
Why do I know so many children who I can't imagine will ever be able to respond to a survey like this?
Why can’t experts show us the adults with the same signs of classic autism we see in our children?
Where are the 30, 50, and 70 year olds in diapers, flapping their hands, walking in circles, and not speaking?
Where are the autistic adults who were normally developing as toddlers, then regressed and never regained lost skills?
Where are the adults with the same concomitant health problems plaguing autistic children—bowel disease, seizures, asthma?
If they’re out there, labeled as mentally ill or retarded in group homes, why hasn’t anyone ever been able to find them?
Autism is diagnosed according to a very specific set of criteria. We're all too familiar with the signs of autism in children but no one bothers to look for adults likewise affected. It would settle the whole controversy. Why isn't anyone seeking them out?
Finally, your claims put you in direct opposition to one of the leading U.S. health officials, Dr. Thomas Insel. Insel is both director of the National Institute of Mental Health and chairman of the Interagency Autism Coordinating Committee.
Insel has been very vocal in the last year when it comes to the question of a real increase in autism. There were two talks given by him, one at the National Institutes of Health and another at the MA Institute of Technology.
HERE and HERE
When he spoke at NIH, 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 if these people have always been here, there'd be no need for more services. We'd have plenty of help already in place.
Insel made the following comments which put him in direct conflict with your claims.
"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 [Factors such as better ascertainment] "don't really explain away this huge increase. 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."
How do you respond to what Insel said?
Media editor: Age of Autism http://www.ageofautism.com/
This is what Coplan posted for answers:
1. An increase in the number of children served does not prove anything about incidence (rate of occurrence of new cases). Even if there is a real increase in prevalence (a question that is open to debate), such an increase tells us nothing about incidence.
For example: Let's say that the incidence (rate of occurrence of new cases) of a particular childhbood disease is constant, but at first the treatment is poor, and 95%% of patients die. The prevalence among adults of long-term survivors is going to be very low - since most patients died as children. Then, someone invents a treatment, and the survival rate rises to 95%. Without any change in incidence, now the prevalence rate of long-term survivors among adults is going to skyrocket, because now the victims are surviving. Get it? This is actually the true story for chlldhood leukemia. In the 1960s, the prevalence of long-term survivors of childhood leukemia in the adult population was close to zero, since the mortality rate from the disease itself was close to 100% (>95% of children died within 5 years of being diagnosed). Today, with no change whatever in the incidence of childhood leukemia, the prevalence of long-term survivors among the adult population has shot up. Why? Because now we can put more than 95% of children who present with leukemia into long-term remission, so they live into adulthood, and get counted in the prevalence data. Prevalence has jumped tremendously, but incidence of leukemia among children has not changed one bit.
I could give you lots of other examples, where incidence goes up or down, and prevalence goes up or down, but in opposite directions. "Common sense" not withstanding, you cannot look at the prevalence (actually, service data) and draw any conclusion about incidence.
2. Prior to 1975, the public schools were able to routinely exclude children with disabilities of any sort. That was when the Education for All Handicapped Law was passed. Prior to that time, parents paid out-of-pocket for private schools, kept their children at home, or placed them in residential institutions.
3. Prior to 1990, the public schools had no way of reporting autism to the Federal government even if they had wanted to, since autism was not on the list of federally recognized disabilities.
4. ASD has a natural history of improvement over time. Leo Kanner described this in his 1943 paper, and his 1971 followup paper, and I have described it in my book. Adults with ASD (at least, the adults without coexisting MR) would not be expected to look like children with ASD, any more than we would expect a butterfly to look like a caterpiller.
5. The reason no one has found the adults with residual ASD is that no one has looked. There is no agency charged with the responsibility of identifying and serving adults with ASD. That is really a shame, since many of them have social and mental health needs. The British (NHS) study identified a prevalence of ASD of 1 in 56 adult males, and 1 in 200 adult females. I think it's relevant to point out that prior to participating in the survey, most of thse individuals were "off the radar" of the social service system in England. There is no reason to suppose that the same is not true over here. I would like to see the MIND Institute or some other group do a comparable study in this country. I also wish someone would hurry up and do a proper prevalence study of ASD in children. Service data cannot be used as a substitute for properly-collected prevalence data.
6. I have never asserted that changes in the DSM, by themselves, account for the increase in service data.
I think this accounts for most of your fact-based questions.
As for why other people hold other opinions, or have (or lack) knowledge of children with ASD, you will have to ask them.
Coplan steadfastly defended his position that autism has always been around. The increase in students with autism is explained away. He also believes that autism improves over time on its own. (So much for all you parents using biomedical treatments and seeing your children improve. It would’ve happened anyway.)
Coplan threw out my argument that we don’t see adults flapping their hands and spinning like our children do because their behavior changes over time. (I’m not sure what he bases that claim on. Has he studied autistic children becoming adults and observed that their symptoms disappeared when as they got older?) He compared autistic children and adults to caterpillars and butterflies in order to make his point.
Coplan admitted that it’s “really a shame” that more isn’t done for adults because “many of them have social and mental health needs.” Coplan is convinced the underserved adults are out there. The reason we don’t hear about them is because “there is no agency charged with the responsibility of identifying and serving adults with ASD.”
In other words, if we had an agency to serve autistic adults, we’d discover just how many there are.
What was really disturbing to me was Coplan’s complacency when it comes to autism. He’s not urgently looking for answers. There were no demands for immediate action. Most of my points were neatly ignored by Coplan in his response. I want to see adults with classic autism. Coplan agreed that we need to look for them. I challenged his argument that DSM changes account for the soaring autism rate as he claimed. I pointed out that a 50 percent increase in autism occurred during a two year period in which there were no changes in the DSM. He answered, “I have never asserted that changes in the DSM, by themselves, account for the increase in service data.” If not changes in the DSM, then what is behind that explosion in autism? He makes claims with no evidence to back them. I told Coplan that the UK autism survey that found only five high functioning adults can’t be used as proof that adults are affected at the same rate children are, but he’s convinced it can.
Two disturbing statements stood out in Coplan’s comment:
“The reason no one has found the adults with residual ASD is that no one has looked.”
“I also wish someone would hurry up and do a proper prevalence study of ASD in children.
Service data cannot be used as a substitute for properly-collected prevalence data.”
How can anyone deny that autism is an epidemic raging among our children without this research? We haven’t identified autistic adults and we don’t have valid statistics when it comes to children, but we’re still supposed to accept Coplan’s views.
Medical experts and health officials seem perfectly willing to rely on shoddy science when they talk. How long is the public going to listen to official claims when there is no valid research to back them?
If service data isn’t reliable, then Coplan has no right to say anything about autism.
If no one has bothered to search for autistic adults, then no one can say that they exist.
Coplan reminds me of the saying, “If you don’t look, you won’t find.”
What if there was a valid, independent study looking for autistic adults AND THEY COULDN’T
What if they did a comprehensive study on the autism rate among children AND THEY FOUND
THAT IT WAS WORSE THAN ONE PERCENT?
For years many of us in the autism community have called for an independent study comparing the autism rate between groups of vaccinated and unvaccinated children.
What if they did a vaxed/nonvaxed study AND THEY FOUND A MARKED ABSENCE OF AUTISM
AMONG UNVACCINATED KIDS?
The research is never done.
It’s deliberate ignorance.
I couldn’t help but notice how Coplan ignored all I said about Thomas Insel’s position on a real increase. Coplan only made one cryptic comment: “As for why other people hold other opinions, or have (or lack) knowledge of children with ASD, you will have to ask them.”
Insel is charged by Congress with addressing autism. He’s convinced that the numbers are a real increase. According to James Coplan, a top expert’s views are just “opinion.” I guess we’re merely supposed to carry on in our ignorance making guesses about autism.
Besides answering questions, Coplan posted another comment about me:
“Ms. Dachel and her readers need to ponder the difference between incidence and prevalence. They would not appreciate being ticketed for speeding just because they had a full tank of gas. The same is true here: Prevalence cannot be used as a measure of incidence.
Ms. Dachel and her readers also need to ponder the difference between Service data, and the true prevalence of ASD. Service data can be influenced by a lot of things, including the availability of funds, reporting rules, social trends to seek a diagnosis, changes in diagnostic criteria over time, the use of "overly liberal" tests (one reader complained that the ADOS over-diagnoses children, but it's widely used for that purpose), etc. The true prevalence of ASD should be ascertained by door-to-door or random subset testing, using trained examiners and standardized methods. We don't have prevalence data in the true sense of the word. We have service data.
“Leaping from service data to a claim about incidence is illogical.
“Finally, to be fair: I don't know the incidence of ASD either. But anyone who claims to have proof that the incidence of ASD is rising (the definition of an ’epidemic’) is stretching the truth beyond its limits.”
I have news for Coplan. Time is running out. Don’t worry. We aren’t going to have to go looking for adults with autism; they’ll come to us. If Coplan wants valid numbers, he’ll have them. They’ll be official too. In the next few years, we’ll be able to sit back and watch as the numbers skyrocket. They’ll be the ones showing us how many 18 year olds are applying for SSI because of autism. We’ll be hearing about the exploding number of unemployed autistic adults. And that will be just the beginning. As aging parents are no longer able to care for their autistic children, there will be a huge new demand for housing and care. Coplan may believe that young adults with autism will go where they’ve always gone, but I have no idea where that is.
Anne Dachel is Media Editor of Age of Autism.