Autism Now 1 in 50? Round Up the Usual Suspects AGAIN

From last years increase of autism prevalence rates from 1 in 110 to 1 in 88 a new report, based on parental reporting now indicates a rate of 1 in 50. Time once again to call out Inspector Renault (looking much like Insel, Grinker and other autism can not really be rising true believers) to round up the usual suspects of increased awareness, ascertainment and any other non environmental excuse they can manufacture to rationalize the failure to conduct the necessary environmental research into autism causation. Following is last years comment on the tired and pathetic posturing of the autism epidemic apologists:

"The usual suspects

The people habitually suspected or arrested in response to a crime. The phrase is usually used in regard to scapegoats rather than actual perpetrators of the crime in question.

This expression has a specific and unambiguous origin. It was spoken by Captain Louis Renault, the French prefect of police, played by Claude Rains in the 1942 U.S. film Casablanca. The context was a scene in which the Nazi, Major Strasser is shot by Humphrey Bogart's character, Rick Blaine. Renault was a witness to the shooting but saves Rick's life by telling the investigating police to "round up the usual suspects"."


-The Phrase Finder

CDC Director Dr. Thomas Frieden, playing the part of Captain Renault from the film classic Casablanca, rounds up the usual suspects as the CDC announces stunning new autism rates in the US of 1 in 88 children, 1 in 54 boys:

"DR. THOMAS FRIEDEN, director, Centers for Disease Control and Prevention: 

There are a few things that we know for certain and there are some things that we don't know. And we always want to be up front about what we do and don't know.

We know for certain that doctors are getting better at diagnosing autism. We also know for certain that communities are getting better providing services to children with autism and that at CDC we've gotten better at tracking all of the children in a community who may have been diagnosed or identified with autism.

So we know that some of the increase is certainly because we're detecting more cases of autism. Whether that's all of the increase or not, we simply don't know. But we do know that there are many children with autism and that many of them need services and that diagnosis is often too late.

So whether this is a real increase or not is really secondary to saying that this is a big problem, lots of people are out there who need services and would benefit from services."

There is no dispute that diagnostic change, increased awareness and better detection probably explain some of the repeated and astonishing increases in autism diagnoses.  There is, however, no definitive study, or group of studies, which assigns 100% responsibility for the pre-2012 increases entirely to these factors.  There is absolutely no credible basis for anyone to state that the recent increase from 1 in 110 to 1 in 88 over a period of a few years is entirely attributable to diagnostic and social factors.  

Autism research funding has historically been directed overwhelmingly towards genetic autism research.  Only in recent years has any significant support been provided for environmental causes or triggers of autism, causes and triggers which might, and probably are, involved in these stunning increases in the numbers of children diagnosed with autism.  

The safe route to take in the face of such astonishing numbers is to invest more monies in treatment, education and residential care of those affected by autism disorders and to invest substantially more research dollars in exploring the environmental causes of autism disorders.  We must search for all the possible suspects as we try to determine what is causing the epidemic of autism disorders that increasingly affect more and more of our children.  

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Should Grinker and Co's Flawed South Korean Autism Study be Taken Seriously?

The newly reported autism study from South Korea with its "shocking" 1 in 38 autism rates figure doesn't make much sense. As reported in the Boston Globe:

"Roy Richard Grinker, a cultural anthropologist at George Washington University who worked on the study, said his own child with autism would probably function very well in such a system.

"Many kids with autism who are doing well can adapt to that highly structured situation," he said.

So, what does this finding mean for the United States?

Not necessarily much, according to several researchers who were not involved in the study. They praised the study generally, but pointed out flaws and assumptions that raise questions about whether there really are so many kids with autism in South Korea -- and by extension, in the United States.

Dr. Isaac S. Kohane, a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School, said he thinks the researchers may have taken their estimations too far by assuming that the rate of autism was the same among the nearly 700 families who declined followup assessments for their children, as among the ones who agreed. Wouldn’t a parent worried about a child be more likely to participate than one with no concerns? Without this assumption, Kohane says the researchers would have found roughly the same 1 in 100 prevalence we see in the United States.

Also, the definition of "autism" is so squishy today that it’s very hard to draw the line between autistic and non-autistic, he and other researchers said."

I am the father of a low functioning son with Autistic Disorder and I am not a fan of Roy Richard Grinker's involvement in defining autism and autism prevalence estimates. Grinker is the father of a high functioning child with Asperger's who favors the New Autism Spectrum Disorder definitions of the DSM-5.

I don't know why an anthropologist with strong biases was involved in an autism prevalence study in South Korea. I am not surprised though if a Grinker involved study found higher rates of autism ... particularly if the autistic persons found to have been missed were very high functioning.

Regardless, Dr. Kohane a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School has pointed out some serious flaws and assumptions involved in the study. Hopefully other serious professionals will examine the study and consider Dr. Kohane's comments before promoting the 1 in 38 study from Grinker and Co.

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Autism Research After the DSM5? At Least Grinker Will Be Happy

Will the DSM5 render meaningless all autism research to date? Will the DSM5 make it impossible to determine whether autism disorders are increasing or whether they are triggered or caused by environmental factors? The odds are good, given the difficulties in answering these questions resulting from the expansion of "autism" disorders in the DSM-IV and DSM-IV-TR to include Asperger's, that our understanding of autism prevalence and causation will be hampered substantially, and perhaps totally undermined, by yet another revision of the autism diagnostic categories in the DSM-5.  Even our understanding of what autism is will likely change, again, as a result of the DSM-5 revisions.  The intellectual disabilities that characterized the vast majority (Yeargin-Allsopp) of persons with classic autism will now be totally  replaced by the "socially quirky" model of autism.

Autism is now recognized globally with a World Autism Awareness Day each April 2.  While the day is used for autism fund raising, and celebrating the color blue,  it does little to actually raise awareness about the nature of autism, the numbers of persons with autism disorders, or the causes or treatment of autism.  Amongst the leading factors that contribute to our inability to qualitatively improve our understanding of autism disorders is the changing diagnostic definition of autism, increased social awareness and according to some at least, the widescale availability of autism treatments and education accommodations prompting diagnostic substitution by professionals, often prompted by parents.

Roy Richard Grinker is one of the best known advocates of the "don't worry, be happy" autism is not really increasing school of thought.  A 2007 copyright summary of Grinker's  book Unstrange Minds tells us all what was really happening with autism increases ...  in Grinker's opinion:

"Unstrange Minds shows how the shift in how we view and count autism is part of a set of broader shifts taking place in societies throughout the world. The growth of child psychiatry, the decline of psychoanalysis, the internet, the rise of international advocacy organizations, greater public sensitivity to children's educational problems, and changes in public policies have together changed the way autism is diagnosed and defined.


Societies are becoming more aware of children's behavioral and learning differences at earlier and earlier ages and more comfortable with diagnosis, medication, and psychiatric labels. Under the rubric of autism we now find a multitude of emotional and cognitive problems, problems that used to be given other diagnostic labels or that were even considered within the range of the normal. Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools in the United States, which first started using the category of autism during the 1991-1992 school year, are reporting it more often, developing ways to help children with autism, and directing parents to appropriate resources. Epidemiologists are also counting it better.


As a result, the statistics on autism that we have today - 1 in 166 -- are the most accurate we've ever had."

 The 2007 summary was written more than a dozen years after the last diagnostic definition change for autism disorders in the DSM manuals.  Yet the CDC recognized rates have moved upward twice since then to 1 in 150 and most recently to 1 in 110.  I am no cultural anthropologist but with a change from 1 in 166 to 1 in 110 it seems fool hardy to simply assume that the increased rates of approximately another 50% in 4 years are accounted for solely on the basis of diagnostic and social ascertainment factors. 

It is worthy to note that the IACC has acknowledged that the almost 100% dedication of autism funding toward genetic focused research has come at the cost of needed environmentally focused research, that the current thinking is that autism arises from the interaction of genetic and environmental factors (hardly a radical concept) and that the IACC view is that the social and diagnostic changes account for only approximately 50% of the dramatic increases in reported cases of autism disorders.

It seems that, finally the feel good, autism is 100% genetic and is not really increasing view of the Grinker (and Neurodiversity) model of autism is about to be seriously challenged and hopefully researched.  But wait a minute ... along comes another autism diagnostic revision in the DSM-5. 

PREDICTION: The DSM-5 autism diagnostic revisions will once again be used to cloud and confuse our understanding of autism rates and causation.  Many concerned parents and concerned professionals will be  Out of Luck in hoping for more understanding of autism.  Roy Richard Grinker, however, and those for whom exploration of potential environmental causes of autism are a nuisance, should be happy that Grinker's 100% genetic, stable model of autism will be protected from serious research challenges for decades to come.

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It's OK, It's Politically Correct to Stigmatize Persons on Intellectual Disabled, Low Functioning End of the Autism Spectrum

"The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.

...

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

...

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

NYT Times Op-Ed, Disorder out of Chaos,  February 9, 2010, Roy Richard Grinker, Anthropologist,  father of a daughter with Asperger's

The stigma of autism is fading fast for those with Aspergers disorder who, by definiton, do not have intellectual disabilities, and who can be quite successful in many fields of endeavor.  The original stigma against those with autism who are intellectually disabled continues and is in fact promoted by people like Professor Grinker who essentially argue that persons with Aspergers should not feel stigmatized by inclusion in the autistic disorder category in the DSM 5 because we know that people with autism are really quite intelligent.  The stigma feared by those with Aspergers who express concern, and spokespersons like Grinker,  is clearly the stigma of being associated with the intellectually disabled.   

The NYT and Professor Grinker do not urge anyone to refrain from such fears  on the basis  that there is nothing wrong with being placed in a disorder category with persons with intellectual disabilities.   Instead,  in 2010 they try to imply that persons with autism disorders don't really have intellectual disabilities at all.  This is a falsehood, perpetuated by successive revisions of the DSM including the DSM 5.  In 2010 it is OK, it is in fact politically correct to stigmatize the intellectually disabled members of the autism spectrum in order to make some persons with Aspergers feel comfortable about formal inclusion in the autistic disorder category.

Professor Roy Richard Grinker, and the New York Times which gave him their podium, assert that autism disorders are disorders only in the sense that persons carrying an autism disorder diagnosis are socially awkward.  They make light of the very harsh realities faced by persons with severe, low functioning autistic disorder diagnoses.  While Professor Grinker,  with a high functioning, intelligent, if socially awkward daughter, feels comfortable in assuring us that "people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s"this father of an intellectually disabled, low functioning 14 year old boy with severe Autistic Disorder does not buy what the Professor is selling.  Professor Grinker's opinion, rosy at it is, informed as it is by his high functioning daughter's Asperger's Disorder, is not substantiated by professional literature or anecdotal evidence concerning Autistic Disorder.

I  know first hand the realities of living with, raising and caring for a severely autistic child, now well into adolescence.  As an advocate I have represented parents of severely autistic children trying to cope with the realities of severely autistic children while the good professors and others who promote autism as a strength prattle on with their powerful media megaphones like the NYT in hand.  As an advocate here in New Brunswick, Canada I have visited with severely autistic persons living in psychiatric hospital facilities.  The good Professor's rose colored,  Autism as Asperger's, glasses obscure his understanding of the harsher realities faced by the severely autistic to the detriment of those most severely affected by autism who need society to understand those realities before their lives can be changed for the better.

The Professor apparently doesn't follow news of autism as closely as he follows news of Aspergers.  If he did he would know of people like  Keith Kennedy lost in mid-west woods for a week, James Delorey who wandered off to his ultimate demise in a Nova Scotia snow storm, the child who died in a neighborhood pool recently,  the young man arrested by police at a  hospital that refused him admittance because of his autistic behavior  who informed the arresting officer that he was a good boy,  and those who are lost in local traffic . Or he might know of those severely autistic children like my son Conor who was fortunate to survive a busy neighborhood street because a truly good Samaritan stopped his vehicle before traffic stopped my son's life and took him to a local convenience store where I was able to locate him, whole and healthy with chips and candies in hand,  after calling 911.  

If the good Professor knew the realities of severe autism disorders he would know of the middle aged woman living in a New York residential facility who was  repeatedly, severely and physically abused by staff until caught on camera and saved by a conscientious staffer.  The  abuse had gone of for some time but the woman, severely autistic, was unable to communicate her situation to the facility and may not have known she could do so.  

The myth that even non-verbal autistic persons have Aspergers like intelligence is promoted in stark defiance of the professional studies done to date.  The Canadian Psychological Association, which embodies in its membership at least as much knowledge of the autism spectrum as that which can be attributed to Anthropology Professor Grinker,  stated in its 2006 Canadian Senate submission that ""Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average"  The  CPA figures, which expressly included only autism and excluded  Aspergers from the 80% figure,  mirror very closely two successive surveys conducted by the CDC in the US.  CDC  Autism and Developmental Disabilities Monitoring (ADDM) Network gathered data in  2004 and 2006  that indicated between 41 and 44% of persons on the autism spectrum (including persons with Aspergers who, by definition are not intellectually disabled or cognitively impaired) also suffered from intellectual disability.

Professor Grinker, proud father of a daughter with Aspergers,   does not mind reassuring people with Aspergers that their inclusion in the DSM 5's autistic disorder category will not result in their stigmatization by association with intellectually disabled persons with autistic disorder.  This proud father of an intellectually disabled son with autistic disorder does mind.  I mind very much and I strenuously object to this  stigmatization of intellectually disabled autistic persons like my son.  For me, such stigmatization is not politically correct.  It is offensive and  unacceptable.  

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