Showing posts with label aspergers. Show all posts

CNN's Very High Functioning Autism Awareness Efforts Misrepresent Autism Disorders




CNN's Portrayal of Autism In the Days Surrounding WAAD 2013
Middle - Jack and John Elder Robison - High Functioning Aspergers
Bottom -Trevor Pacelli High Functioning PDD-NOS (Holli Dunn Photography)

To no big surprise successful, very high functioning Asperger's businsessman, author and family man John Elder Robison's new book Bringing Up Cubby has benefited from two high profile interview promotions on CNN. A promotional appearance with his son on Dr. Sanjay Gupta's Sunday show was followed with a gushing interview on the CNN morning show Early Start. CNN, and its in house neurosurgeon Dr. Sanjay Gupta, have long delighted in interviewing very intelligent persons with autism.

Neither of these interviews enlightened the world about the realities faced by those less fortunate than the Aspergers family Robison, those with severe autistic disorder. There was discussion of not having a lot of friends but no discussion of intellectual disabilities, serious self injurious behaviors, children wandering, sometimes with dangerous consequences, far from family or schools, the challenges of severely autistic children in schools or in finding a place to live when their parents grow old and ultimately become deceased.

CNN's autism awareness effort wasn't restricted to promoting very high functioning businessman John Elder Robison's literary career. It also assisted in kick starting the career of yet another very high functioning person with autism. The CNN obsession with high functioning autism continued  with a special to CNN article by Trevor Pacelli self described as a high functioning individual with PDD-NOS. Below his Holli Dunn Photography picture it states that: "Trevor Pacelli, 20, maintains a 3.6 GPA at community college and has been accepted to five universities."

Several years ago CNN afforded several episodes to the Amanda Baggs story, portraying her as low functioning. Subsequent to the CNN-Baggs collaborations several former acquaintances of Baggs, who attended the same private school for gifted youths, as she had attended came forward on the internet to describe her as a highly verbal, creative individual with normal functioning abilities.

I am not suggesting that CNN or Dr. Sanjay Gupta intentionally misrepresent autism to enhance ratings and profits. I recognize that Dr. Gupta has a busy schedule and it would not be easy for him and his crew to visit a facility caring for children, youth or adults with severe autism disorders.   I am simply stating that, for whatever reasons, Dr. Sanjay Gupta and CNN present misrepresent autism to the world by repeatedly featuring high functioning persons with autism.

Obviously Dr. Gupta and CNN are not alone in portraying high functioning autism as representing the entire autism spectrum.  Autism Speaks engages in the same exercise with  very high functioning  John Elder Robison and high functioning Alex Plank and tends to downplay intellectual disability and other inconvenient severe realities facing many with autistic disorder.

Autism fund raising power houses and major mainstream media alike misrepresent autism to the world painting a picture of autism as gifted, shy individuals while ignoring the harsher realities facing those on the severe end of the autism spectrum.

This misrepresentation provides cover for governments in funding autism research and  in providing services for those with severe autism disorders: why waste dollars researching or providing services for a disorder that appears not to be a disorder after all? 

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Are Autism Disorders Morphing Into Einstein Turing Syndrome?


Autism disorders are misrepresented in the mainstream media, on the internet and, as has been confirmed many times, in autism research which excludes those with severe autism disorders simply because it is too difficult to work with severely autistic children and adults. One of the sorry ways in which autism disorders are misrepresented is whenever mention is made of historical geniuses like Albert Einstein or Alan Turing whose personal qualities are attributed to undiagnosed cases  of autism.  Autism is portrayed as a different way of thinking, the foundation of genius, with no mention made of those severely affected by autism and the large numbers of autistic persons with intellectual disabilities. Maybe though it is time to divide the autism spectrum into two groups, one for whom autism is a disorder under the DSM and ICD diagnostic manuals and one for whom it is a matter of genius and identity, a different way of thinking?

Arguably the silliest speculation of all is the notion that Jesus Christ was autistic a theory promoted by one Alan Griswold of Autistic Symphony fame and the MDs, PhDs and RNs who co-authored  the article Did Jesus Christ Have Autism? An Interdisciplinary Evidentiary Analysis into the Psychiatric and Medical Literature Supporting the Hypothesis That Autistic Spectrum Disorder (ASD) Was the Root Cause of a Terrible Cross to Bear.  The underlying message of such fanciful speculation is simple ... autism is not a disorder ... it is a just a different way of thinking that includes every genius known to history.  

Anniversaries such as the recent 100th anniversary of the birth of Alan Turing the genius who contributed so much to our modern computer world and to the Allies efforts in WWII, and who was prosecuted for his homosexuality, inevitably spur more of the autism as genius rhetoric that obscures the real challenges faced by persons with classic and severe autism disorders: (1) (2, see in particular the comment section).

A significant question to me is whether the DSM5 committee is going in the wrong direction by uniting the autism disorders into one spectrum disorder varying in severity.  Would it make more sense to describe at least two different disorders? 

One for those who actually suffer from the deficits of severe autistic disorder, the vast majority of whom also suffer from intellectual disability. The other for the higher functioning individuals who identify strongly with history's geniuses and some of whom do not wish to acknowledge the existence of  low functioning persons with autism disorders?  

Why combine under one diagnostic umbrella persons with such different challenges in life, one group who clearly have a neurological disorder and the other for whom the term "disorder"  itself is an affront to be erased from public consciousness?  

Autism and Aspergers, (Einstein Turing Sydrome?), two different realities, two different diagnostic categories, now and in the future?  Since autism is diagnosed by behaviors and functioning levels shouldn`t consideration be given to the possibility that the gaps between those who are severely impaired and those who are capable of great feats of art, literature and science should not be grouped in one diagnostic basket?

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