Wednesday, June 30, 2010

Autism Rising? Dr. James Coplan Says It Ain't So But Is He Right?

Dr. James Coplan,  a developmental pediatrician with four decades of experience with special needs children,  argues in Psychology Today that there is no increase in incidence of autism.  Dr. Coplan distinguishes between autism prevalence which he describes as rates of autism diagnosis and rates of autism incidence which he describes as rates of autism occurrence .  The essence of the Coplan autism epidemic denial has been heard before and is obviously partially correct. The  changes in diagnostic definitions of autism from the DSM-III to the DSM-IV have expanded dramatically the numbers of persons described as autistic. I agree with that observation and I don't know of anyone who disagrees with it.  The problem is that those diagnostic definition changes do not necessarily explain the entire, startling increase. 

Dr. Coplan does not really provide any credible argument or evidence to show that the entire startling, increase in autism diagnoses  results from the 1994 diagnostic changes.  Since my son was diagnosed 12 years ago (and his diagnosis is Autistic Disorder, assessed with profound developmental delays) the reported rates of autism, the autism prevalence as described by Dr. Coplan,  have literally skyrocketed. From 1 in 500 to 1 in 110 with the most recent increase from 1in 150 to 1 in 110 occurring over a two year period, long after the DSM-IV changes.  Dr. Coplan simply provides no compelling argument or evidence to support his rigid thinking that the increase is explained entirely by the diagnostic changes, increased awareness or the internet as some are now using to spice up the denial argument.

Another problem for Dr. Coplan is that he is not criticizing parents of autism children , celebrities, or doctors who do not follow medical "consensus"  with his argument. It is easy to mock, ridicule and belittle   a celebrity actress autism mom when defending the safety of vaccines (even though it is an irrational strategy which simply creates more suspicion of health authorities).  It is much more difficult to ridicule the CDC which compiles the autism prevalence rates. It is much more difficult to mock the IACC which has published information indicating that only about 40-50% of the increase can be explained by the 1994 diagnostic change and social ascertainment factors.

Another huge problem for Dr. Coplan is that his argument ignores any possible environmental factors as causes or triggers of autism disorders.  If autism incidence, rather than diagnosis, has remained constant than that supports the decades  old thinking that autism was entirely genetic; that no environmental factors were involved. That paradigm was never much more than an assumption to begin with but it is  now giving way to a new paradigm; one that views autism disorders as resulting from the interaction of genetic and environmental factors.  

That autism paradigm shift is remarkable in its own right given the fact that autism research funding has been directed overwhelmingly toward genetic research at the expense of environmentally  focused research.  In other words if you look at the sky you will see the sky.  If you look at the ground you will see the ground.  If you do genetic research .... well you will find that in 3% of cases studies persons with autism had common genetic processes all of which were unique to the individuals involved.  YUP after decades of genetic research that's all we got.  With a shift toward more environmental autism research we are likely to find more environmental triggers of autism disorders ... and more information to explain the startling increases in autism incidence.

This humble autism dad in small town New Brunswick, Canada does not need a distinguished pediatrician like Dr. Coplan to convince me that the DSM-IV expanded the numbers of those diagnosed  with autism.  And I agree with him that the DSM-5 will continue that expansion. A great danger of that future expansion is that the obsession with genetics will once again be supported by the inability to distinguished autism prevalence and incidence because of a new DSM change.  The environmental aspect of autism disorders, the environmental triggers of autism disorders, which may essentially be synaptic disorders, will be neglected and the real increase in autism incidence denied and obscured again.

Dr. Coplan's decades of pediatric experience should be respected and valued but they should also be seen as potential obstacles to new thinking, new paradigms and new evidence from credible authorities, like the CDC and the IACC. Researchers like Dr. Irva Hertz-Picciotto,  who has said that we need more environmental focused research to help us understand what is happening, should be heeded and their opinions valued.  We have to move to a new paradigm and abandon the old assumptions that autism is entirely genetic, that autism is not actually increasing, if we are to understand what is causing these autism disorders that may be synaptic disorders.


Unknown said...

I received a comment that I did not publish because the author tried to reduce my comment to a battle of personalities Dr. Coplan v Dr. Hertz-Picciotto which is not even a reasonable interpretation of what I said in my comment. The author is a Neurodiversity blogger who does not, in my opinion, seek actual discussion.

The CDC and IACC are the two primary sources for my comment. The IACC in particular, per Dr.Tom Insel, has said that the DSM diagnostic changes referenced by Dr. Coplan do not explain more than 50% of the increases.

IACC Director Insel has also stated that the onus is on those who would deny the increase in autism disorders is real to make their case given the startling increases in diagnoses as reported by the CDC.

Dr. Coplan did not make his case.

Unknown said...
This comment has been removed by the author.
Barry Hudson said...

Hi Harold,

An anecdote - when my son went to JK he was the first ASD child they (the school) had seen in over a decade, next year five ASD kids are coming into JK, the following year the board has already confirmed they will have eight ASD kids coming into the school. As I understand the ones to come their diagnosis are CLEARLY not due to more awareness or diagnostic expansion. This is the case reported by many school boards. If anecdotal observation demonstrates more genuine cases how on earth can a competent professional deny the statistical proof (fun with statistics – to go from the incidence of 1 in 40,000 as first recognized to the current 1 in 110 the probability of such being a coincidence, in statistics speak, the p value [probability] = 0).


Anonymous said...

I would like to comment about on small part of your 1st comment. You state "the DSM diagnostic changes referenced by Dr. Coplan do not explain more than 50% of the increases." This is technically factual, and I actually agree with it, but think that perhaps the manner in which it is presented is more than a little misleading.

Factually, it is accurate if we consider it represents the situation "from the top down". Brick was the earliest study conducted which demonstrated a very significant increase in autism. Brick found 4 in 1000 children had "core autism", which one could construe to be autism as defined prior to the DSM-IIIR and DSM-IV expansions, and 6.7 per 1,000 for Full Spectrum, giving us a ratio of about 3:4 for "Expansion Autism:Kanner's Autism, not so far from the 50% that Insel has stated. Brick was followed by numerous studies in mulitple locations in multiple countries which have shown numbers consistant with those from NJ, if they are gradually creeping upwards.

However, Burd in the mid 80's found just 3 per 10,000 for "core autism", and a follow up study years later found he had missed 1 single Autist. This rate was entirely consistant with numerous other studies in the 70's and 80's in mulitple locations in multiple countries, so we can trust Burd was accurate in his assessment.

What we see is an very precipitous jump in prevalance of greater than 1000%, something which cannot be explained by simple genetics, and absolutely must be dependant upon some external environmental factor, either activating genes which may have been present but dormant previously, degenerating genes in novel way(s), or else not relying upon genes at all, but causing more straight forward metabolic damage leading to autism.

The 50% only comes into play for the Aspies and PDD-NOS persons who would have been previously completely off the radar since they did not present as severe deficits in communication and social interaction.

It is entiorely possible that there has been NO increase in Asperger's, since it was largely unknown by professionals until just very recently. But to make any claims that people with full-blown autism were somehow missed in numbers that would make incidence consistant for decades past is either the foolish musings of the ill-informed or just straight forward academic dishonesty, take your pick.

Dad Fourkids

M.J. said...

The problem with Dr. Coplan isn't that he is stuck holding old beliefs, but rather he seems to believe in the ND movement. If you look at his comments on his first post (sorry, can't get a link to it) -

"I also have a sister with developmental disabilities, so I have lived some of these struggles from a sibling's perspective."

followed later by

"The irony in my sister's case is that my parents tried too hard, I think, to make her "normal," rather than enjoying her (and the rest of us) for who we were."

And more importantly, in his second post, he links to a paper by Morton Ann Gernsbacher, Michelle Dawson, and H. Hill Goldsmith called "Three Reasons Not to Believe in an Autism Epidemic"

If he is coming from an ND perspective it is no wonder he engages in denialism.

Deborah Zike said...

I am responding to your recent article in Psychology Today. I am delighted that envronmental and/or prenatal causes are now being looked at for causes of autism. My brother who died in 2009 was diagnoses with autism in 1968. I remember our mother had several risk factors during that pregnancy. Tim was also born 3 weeks premature and was jaundiced when he came home from the hospital. Our sister who was quoted last year in the New York Times claimed that autism is genetic. She teaches at Eastern Michigan University in their autism program. I wonder if she is in denial about all that our mother went through in the pregnancy with our brother. I appreciate studies of other causes for this condition and wonder why people keep claiming autism's genetic when this condition had never occurred in our family before.