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Epidemic Denial: Our Questions Dr. Coplan's Answers

Question mark kids By Anne Dachel

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
Part 2
Part 3
 
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.
HERE...
"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?

Anne Dachel
Media editor: Age of Autism http://www.ageofautism.com/

This is what Coplan posted for answers:

Your questions

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.
JC

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.

Deliberate Ignorance

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

FIND ANY?

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.
 
 
 

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@ GennyGC - “The whole article is guaranteed to raise your blood pressure, I know it does mine.” Yes...mine too.

Sadly, the WHO has proven itself to be nothing more than an extension of Pharma. They will never do anything to substantively injure the franchise. Pharma utilizes the WHO to influence governments, worldwide. It’s insidious. Pharma is behind it all. They are the global puppet masters. They always have been. It’s all carefully orchestrated. They act in concert.

Viera Scheibner, PhD - "Many infants who suffer the so-called 'shaken baby syndrome' may be victims of undiagnosed vaccine damage. Ever since mass vaccination of infants began, reports of serious brain, cardiovascular, metabolic and other injuries started filling pages of medical journals." In fact, pertussis vaccine has been used to induce encephalomyelitis, which is characterized by brain swelling and hemorrhaging.”

http://video.google.com/videoplay?docid=6531447125053615129#

“...brain swelling and hemorrhaging”...pertussis vaccine. Is there a link?

“...serious brain, cardiovascular, metabolic, and other injuries...”. Is there a common pathophysiologic link?

http://www.vierascheibner.org/index.php?view=article&catid=40%3Alarge-manuscripts-on-vaccination&id=51%3Avaccinations-and-the-dynamics-of-critical-days&option=com_content&Itemid=56

http://www.whale.to/vaccines/sbs.html

@Meryl Dorey

I did wonder who comes up with these ridiculous comparisons, now this one has got a name on it so to speak! this particular comparison is actually used on the official WHO site as part of a section headed "6 common misconceptions about immunization"

"Diphtheria-tetanus-pertussis (DTP) vaccine and Sudden Infant Death Syndrome (SIDS)

One myth that won't seem to go away is that DTP vaccine causes sudden infant death syndrome (SIDS). This belief came about because a moderate proportion of children who die of SIDS have recently been vaccinated with DTP; on the surface, this seems to point toward a causal connection. This logic is faulty however; you might as well say that eating bread causes car crashes, since most drivers who crash their cars could probably be shown to have eaten bread within the past 24 hours."

The whole article is guaranteed to raise your blood pressure, I know it does mine.

http://www.who.int/immunization_safety/aefi/immunization_misconceptions/en/index4.html

Coplan's arrogance seems to only be exceeded by his ignorance. This reminds me of Walter Orenstein from the CDC stating that 95% of people who have car accidents would have eaten bread within the 24 hours prior to the accident so therefore, we could say that eating bread causes car accidents as much as we can claim that vaccines cause reactions.

Incredible that so-called scientists can be so unscientific when it comes to vaccination.

Meryl Dorey
Australian Vaccination Network

There is no epidemic, ok, yeah *sarcasm*

You want to explain the rise in numbers?!

Increased diagnoses and awareness only goes so far. I can see ow that would speak to a few but thoudsands?! More awarness my ass!!

I am sorry, but there are far more people today with stories of how thier young ones went from normal to having autism in record time! There are to many kids being diagnosed now.

You can't tell me we simply missed these kids before. Even those like me with AS are kind of hard to miss! We have a way of making ourselves KNOWN!! As any parent on here can tell you!

And the more severe, if you missed them before, and they were not counted, how does this make me feel like I should put my trust in mainstream medicine again?

Doesn't that make you all look like a bunch of fools?

Thank you so much, Anne, for having the patience to debate this man. It is so aggravating to read his tired old arguments. The first comment I wrote there was removed, probably because I used the word "stupid" too many times.

Dr. Coplan feigns objectivity, but clearly he is influenced by personal experience. Assuming that there were either two or three children in his family, the rate of autism among children living in his home was either 33% or 50%, so no wonder he thinks the rate hasn't gone up. To him, 1% is a big decrease.

Well, he may have a nice future ahead of him because his views are surely very popular among some people who have a lot of money at their disposal to pay towards influencing perceptions of autism. But it won't last forever, between the study of vaccines on monkeys, the court cases which are surely going to occasionally occur before judges with some sense, the siblings who will grow up knowing what really happened...

"This man has no proof of anything he presents other than his own interpretations."

Bensmyson is on the money.

Coplan is quite good at making unsupported, unfounded assertions based on his own misinterpretations of all the collected data. His use of the UK survey data clearly demonstrates he has no clue or real world comprehension of what is indeed an epidemic of neurobehavioral disorders. Coplan writings will be obliterated by the tsunami that is going to devastate this countries resources.

I couldn't even finishing reading his garble. But, I will say, all this hyped-up talk aside, anyone over 40 knows that these children didn't exist. We are not stupid. We know that our relatives and neighbors went through the school just fine, but our children can not. This is new and different. There were no hyper kids in my classes. The only odd children were a few with mental retardation, and there was very few. And they were very social, just not smart enough for regular school. The lack of social skills first showed up with computer nerds, actually. They were the first people to be labeled as socially inept. Since electrosmog effects the immune system which is at the heart of autism, then I can see why they would be the most vulnerable. But, they still made it through regular school. But, now many children are not making it in school and the poor teachers are coping with the hyper and moody kids that can. It's not just autism, its ADHD, OCD, Bipolar, etc. our kids are getting. This is all new. Only adults got Bipolar in the old days. Nowadays, the kids are full of diagnoses. The young people can be fooled because they weren't there, but you can't fool us over 40 because we saw all this unfold in real time, real life. (My kids are recovered from treating for pathogens and toxins.)

" 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. "

And children just go from crawling to flying by .... by...um .... ah.. magical transformation, maybe like in Peter Pan or is it more like Pinocchio?

I really wouldnt trust this man around children.

When I told a neighbor Ben had autism, she said, "Isnt it great that for some reason it disappears in most kids around 7 yrs of age?"

Thanks Katie, I too saw his post (prior to his removing it when attention was brought to it) regarding his pathologically neurotic projections that his parents neglected him in favor of his sister. Even today he defends his use of the term "mentally retarded" to describe her disability.

This man has no proof of anything he presents other than his own interpretations. And those interpretations are influenced by his own childhood issues and personal family dynamics.

He is promoting a book and speaking engagements. He will wear this argument and any others we have with him, as a badge of honor. Even the Rotary Club wants to know if you are one of those "anti-vax nutcases" before they allow you to address their members about autism. Having no concept what "anti-vax" means or represents, much less autism, they have built a prejudicial bias against anyone questioning the safety of vaccines based on news stories and other influences produced by a billion dollar propaganda campaign.

Giving Coplan 2 minutes of thought is a wasted couple of minutes.

I have two siblings who I believe were permanently and totally disabled due to jabs they received while growing up. Their lives have been destroyed. So too, have the lives of my parents, who have had to take care of them. One is a ward of the state. They will both become wards of the state, when my parents die. A graphical demonstration of the SSI numbers over time should be VERY useful and effective in making the point that there is a crisis in progress. Both Coplan and Grinker sound very much like moral entrepeneurs, sociopaths who have capitalized on human misery and suffering. There are many others, e.g., Offit. Crimes against humanity come to mind.

Another typical tactic of the vaccine nazis is to deny that the epidemic ever happened...

When the epidemic was first declared in about 1995, the first response of the CDC was to determine if the epidemic was real, which took about 5 years.

This led to Simpsonwood meeting and the endless cover-up beyond that.

Sounds like he's admitting that they have been mercury poisoning us for a long time, which they have. From calomel to thimerosal, they have been keeping us sick and them rich. But thimerosal causes autism which is a new and early poisoning and he knows it.


I have the SSI numbers up till the year 2008 and they have increased exponentially.
I plan on getting the figures for 2009 and 2010 in January 2011 and I'm confident they will have gone through the roof

Absolutely outrageous responses by Dr. Coplan. His responses are as thin as white gauzy curtains---as if we can't see through them. Anne, there is NO increase because I said so(Dr. Coplan). Get it????????????
Maurine

Dr Coplan, like Paul Offit would make fascinating PhD dissertations on the impact of emotionally withholding parents.

Coplan complains ad nauseaum that his parents neglected him in order to assist his disabled sister and clearly needs psychological help to get over this decades old pain. The result of Coplans' long held resentment is massive projection of hostility towards parents who are involved in the recovery movement and those who actively advocate for their ASD kids.

Summary conclusion of the UK adult autism survey:

'19 cases were identified in the phase two sample. Only a subset of phase one respondents was selected to take part in a phase two interview. Had all respondents completed a phase two interview, we estimate that 72 cases would have been identified in the sample as a whole. The small unweighted base size means caution with interpretation is required. Rates are shown for all adults and separately for men, but not separately for women due to small numbers.' (p.13)

But those with the highest scores in phase 1 screening we called back for interview, so how come they missed so many? Further on they nevertheless find the 1% figure to be correct to a 95% confidence interval (p.39).

http://www.ic.nhs.uk/webfiles/publications/mental%20health/mental%20health%20surveys/Autism_Spectrum_Disorders_in_adults_living_in_households_throughout_England_Report_from_the_Adult_Psychiatric_Morbidity_Survey_2007.pdf

Of course, the patronising language of Dr Coplan is really offensive.

It is outrageous for Dr Coplan to cite the UK survey. They didn't find the numbers they were looking for (1% as stated in pre-publicity for the study) so they projected them instead - nor indeed, did, any of the cases identified have a proper diagnosis.

http://childhealthsafety.wordpress.com/2010/02/10/uksurveyautismlink/

There is much more to emerge about this farago, but it could not be better evidence that even given a lot of money to conduct an adult autism survey UK scientists were unable to detect the cases in any real numbers - and none at the severe end of the continuum.

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