By Robin Hauman Morris
Truth in advertising is hardly a novel approach. The mantra for Syms discount stores: “An Educated Consumer is Our Best Customer” rings provocative. Everyone wants a bargain, but do we gamble with our health in the process? Does a diagnostic label bring us to our knees? How so, does the public manage to skew scientific research or concrete data in favor of speculation? What bias alters the classification system admitting or denying diagnoses into a spectrum disorder?
Michael Specter’s new book Denialism, as reviewed in the NYTimes tackles the recent segue from science. The term “denialism,” used by Mr. Specter as an all-purpose, pop-sci buzzword, is defined by him as what happens “when an entire segment of society, often struggling with the trauma of change, turns away from reality in favor of a more comfortable lie.” Regarding the link between vaccines and autism, he ridicules Robert F. Kennedy Jr. (accused of writing an antivaccine article “knit together by an almost unimaginable series of misconceptions”)
Simon Baron- Cohen thoughtfully argues the dangers in eliminating Aspergers Syndrome from the spectrum of autism. The Short Life of a Diagnosis explains in careful detail that the The Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is the bible of diagnosis in psychiatry, and is used not just by doctors around the world but also by health insurers. The implication of diagnosis far exceeds the paper it is written on; what happens to the individuals who have already been diagnosed? What is their future regarding supports and services?
Dr. Cohen reminds us that the psychiatric manual is decided by a group of doctors who consider symptoms and behaviors, not biology. This is a significant point of fact. Adding and removing qualifications for diagnoses are part of the nomenclature, but it is not without caution and caveat. We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual.
I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily. Ultimately, the importance of science should prevail. It is an unbearable responsibility for parents and families to make decisions based on hearsay. Whom, where and when to trust should be more comfortable choices for the “educated consumer”. Hopefully, research and hard evidence will make the difference.
3 Replies to “Judging vaccines and diagnosis: Autism takes the hit”
I don’t care if Asperger’s says or goes, as long as it’s removed from the Autism Spectrum and becomes a separate diagnosis. Those Aspies that have nothing in common with those with Autistic disorder are not lobbying to give the more inflicted better lives, but only to promote themselves and how they are doing fine.
As a parent with one with NLD and Autistic Disorder… IMO… they are not the same and neither is Asperger’s.
If they are all melded into one dx… maybe it’ll get rid of those that think Asperger’s means they are brilliant and special and not disabled. Therefore allowing those that are disabled to get services.
I kind of understand the anger some parents of kids with “classic autism” seem to have for those with Asperger Syndrome. I have similar frustrations when I hear about kids who are diagnosed with Asperger’s at age ten or twelve, after being in a regular classroom with no IEP and no supports for their entire educational career. My son has Asperger Syndrome, and it is not “mild.” He has to have an aide in any classroom and could never have gone beyond age two or three without a diagnosis. He cannot participate in camps or sports unless he has a trained one-on-one aide. Of course there are no trained one-on-one aides available for most activities, so my son simply cannot participate.
In my opinion, though, parents of kids with “classic autism” can benefit from observing people with Asperger Syndrome. My son’s symptoms are not completely unlike those of the nonverbal autistics in his classes. The difference is that he can sometimes (not always) at least partially explain what is bothering him and why. This information could be useful for anyone trying to understand how nonverbal autistic kids his age might be feeling when they react in similar ways to the same events.
I’d be fine if the spectrum was done away with and Asperger’s was separated from autism in the DSM. For one thing, you’d see autism rates plummet as a result and maybe we’d get to hear the last of the “epidemic.”
Louise, I was actually thinking along those same lines the other day. Rates of ASD keep increasing and people argue over whether it’s increased awareness, altered diagnostic criteria, environmental influence, or, my personal favorite, some sort of selective pressure on genetics. This makes me wonder about the trend in diagnosis of classical autism. Clearly we still have the changes in diagnostic criteria to contend with, and increased awareness early on, but I would be willing to bet that classical autism rates are not rising as quickly as ASD rates. My thinking for this is that, while higher functioning individuals are only being detected and diagnosed due to increased awareness, we have now reach a point of social consciousness about the disorder where individuals with the most severe cases have been diagnosed pretty reliably for years now (or, at the very least, MORE reliably than higher functioning individuals).
Of course, please don’t misinterpret and jump on me, I’m not saying that Aspies is always less severe than classical autism or anything of the like, but ON AVERAGE it is (don’t ya’ just love statistics?) and that is what such analysis is going to have to make use of, because there should be clear record of differences in these diagnoses, while the more useful level of functioning information is not easily deducible from old records. Time to go see if I can find the information…