Low Functioning Autistic Persons Remain Invisible on CNN and in the DSM-5's New Autism Spectrum Disorder

Elizabeth Landau, a CNN Health writer/producer, mentions briefly the DSM-5's New Autism Spectrum Disorder, in a report on the organizational changes in the DSM-5 in Psychiatry 'bible' structure overhauled. Ms. Landau's discussion of changes in the DSM autism classification focuses exclusively on the impact the formal inclusion of Asperger's syndrome in Autistic Disorder will have on persons with Asperger's and parents of children with Asperger's.  No mention is made of the impact on that the changed definition of autistic disorder will have on the invisible autistics, those with actual autistic disorder, often low functioning, with intellectual disabilities, who are likely to live their adult lives in some level of residential or institutional care:

"This organizational framework is trying to emphasize that we don’t have strict divisions between disorders," Regier said.



For instance, Asperger's syndrome, a high-functioning form of autism, instead of being its own diagnosis, would now fall under the broader “austism spectrum disorders.” This move has some parents unhappy because "autism" sounds scarier than Asperger's, which has taken on its own identity in that community, and because children with Asperger's have specific educational needs that are different from kids with more severe autism.



But the association has heard from other parents frustrated that their children with Asperger's are denied special education benefits reserved for autism, Regier said. And biologically speaking, Asperger's is a form of autism, doctors say.

CNN, of course, is not unique in excluding mention of those with autistic disorder, particularly those severely affected by autism disorders, while discussing changes to the DSM autism diagnostic category.The process started in 1994 with the DSM-IV. The DSM-IV revision included a de facto inclusion of Asperger's with Autism in the Pervasive Developmental Diosrders.  The new revision completes that process and waters down further the requirements for a diagnosis of autism. 

As previously noted by CDC autism expert Dr.  Marshalyn Yeargin-Allsopp the DSM-IV definition change, amongst other accomplishments, lowered the rate of persons with autism AND intellectual disabilities ... by expanding the definition of autism to include persons who were by diagnostic definition not intellectually disabled.  Autism's "vast majority" to quote Dr. Yeargin-Allsopp became a large minority.  With the new changes more persons without intellectual disability will be diagnosed as autistic under the watered down definition.  The APA will have taken another large step toward lowering the rates of persons with autism and intellectual disability, not by helping to improve the condition of those persons but by redefining them to a  smaller corner once again. 

It will be easier for APA members, and other health professionals,  to ignore low functioning autistic persons as they become a smaller and smaller percentage of the DSM's New Autism Spectrum Diosorder.  It will  also be  easier for Autism Speaks to continue its feel good "autism" fund raising by promoting  the careers of very high functioning persons with Aspergers, like John Elder Robison and Alex Plank, as the faces of autism when their diagnoses are officially changed from Aspergers to Autism Spectrum Disorder. And it will be easier for Autism Speaks to retain its status as Autism Without Intellectual Disability Speaks.

Meanwhile the vast majority of those currently diagnosed with Autistic Disorder, those who also have intellectual disabilities, those with low functioning autism disorders, will become even more invisible to the public eye. 

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.

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.