Neil S Greenspan on Media Feel Good Portrayals of Autism Disorders

One of my frequent complaints  is with the media tendency to present "feel good" features about autism disorders while ignoring, almost completely, autism's  harsher realities.  In Autism and the Media at the Huffington Post Neil S. Greenspan, immunologist and clinical pathologist, expresses the same concern.  Mr. Greenspan comments specially on a recent NPR broadcast in which Weekend Edition host Scott Simon speculated that a number of historical figures might have had Asperger's including  Einstein, Ben Franklin, Napoleon, Lincoln and Harry Truman.  To the NPR list could be added the names of Mozart, Van Gogh and .. my all time favorite .... Jesus Christ  All have been speculated by media, authors and even academics to have been autistic.   Greenspan notes that the feel good emphasis can distort the public's understanding of autism to the possible detriment of those most severely affected by the disorder:

There is a tendency for groups that serve or advocate on behalf of those with disabilities to focus on individual success stories, even if rare, to fend off the prejudice and even hostility that sometimes arise in the general public and are directed towards those with various diagnostic labels. I saw this first hand with elements of the learning disabilities (LD) community that, at least in some instances, were reluctant to acknowledge that some kids with LD are below average in standard measures of intelligence. The upshot was that the most vulnerable members of this population actually had even fewer options than the individuals who could be presented to the broader public as pretty much "regular" kids, with their "learning differences" minimized.

A human interest story about an individual's struggles with a disability that is tied up in a pretty metaphorical bow at the end of the piece will undoubtedly attract more reader/listener/viewer attention than a more demanding discursive, analytical discussion, especially if the conclusions are not upbeat. Perhaps, it would be counterproductive to completely eliminate the uplifting narratives focused on one individual at a time, but if understanding, not just awareness, of autism is to be advanced, a bit more of the sort of journalism focused on conveying information and not just eliciting emotion will be needed.

What really jumps at me in Greenspan's commentary is the refusal by some members of the Learning Disability advocacy community to acknowledge that some children with LD are below average in standard measures of intelligence.  This is a serious issue with autism disorders where mere mention of the high numbers of persons with Autistic Disorder and Intellectual Disability can prompt angry responses.  Those who refuse to see what is in front of their faces will ignore data and statements from sources such as the ICD, the CDC and the Canadian Psychological Association rather than admit the realites of Autistic Disorder and Intellectual Disabilities.

I agree that constant emphasis on a few success stories trivializes the very real challenges faced by the many who are severely affected by autism disorders. This presents an unrealistic picture of autism disorders to the public and harms autistic children and adults.

The media should tell the full truth about autism disorders including the harsher realities  they present.  When it comes to autism disorders there is no good reason  for the media to deviate from the old maxim .... honesty is the best policy.

I commend Neil Greenspan for injecting some autism reality into the internet discussions of autism disorders.  Hopefully the good people at the CNN, CBC, NYT, New Yorker Magazine and other major media outlets that obsess with the feel good autism stories will read Greenspan's commentary and take it to heart.

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Obama Disability Nominee Doesn't View Autism as a Real Disability, Marginalizes Role of Parents, Caregivers

US President Barack Obama has nominated Ari Ne'eman, a  University student with an apparently very mild form of Aspergers Disorder, to a national disability council.  Since that nomination was made public Mr. Ne'eman has issued statements through friendly bloggers, all too willing to uncritically promote his views,  stating that he DOES see autism as a disability.  Mr. Ne'eman in fact only sees autism disorders as disabilities in the social model sense, in the sense  that society fails to accommodate persons with autism, thereby creating the disability.

The following quote is from a June 2008 NPR  (obviously well before he was nominated by US President Obama) interview:

"As its name suggests, the Autistic Self-Advocacy Network aims to help people with the disorder represent themselves, instead of relying on families and care providers to speak for them. They share a credo with other disability groups: "Nothing about us without us."

Ne'em describes Asperger's and autism as disabilities — but with a twist. "We're disabled by society," he says. "What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community."

[Highlighting added for emphasis - HLD]

Ari Ne'eman, a very high functioning young University student with Aspergers, who is capable of communicating with NPR, the New Yorker, CBC, Newsweek, and Washington politicians, officials and dignitaries,  including the First Lady of the United States, feels entitled to speak authoritatively about Aspergers AND autism, including the 75-80% of persons with Autistic Disorder and cognitive impairments.  He does so on the premise that autism is a disability ONLY because of society's  treatment of people with autism whatever he means by the terms autism and Aspergers.  It is not clear what he in fact means by these terms since he does not endorse the medical model of autism disability.

Apart from not viewing autism disorders as medical disabilities  the  University student with Aspergers feels that his views about Autistic Disorder and other autism  spectrum disorders should be given greater weight in relation to autistic children than the parents and caregivers of those children.  Mr. Ne'eman clearly does not respect the role of parents in representing the interests of their autistic children, particularly those severely autistic children who can not speak for themselves and with whom Mr. Ne'eman has so very little in common. Many parents seek treatment and cure for their autistic children's autism disorder disabilities.

US President Barack Obama is seen by many, including this Canadian, as an outstanding leader on many fronts.  With respect to autism disorders though Mr. Obama has signaled, at best, a lack of understanding of  the real challenges facing the severely autistic ... and the family members who care for them ... by nominating a  University student who does not understand the seriousness of the challenges faced by those with actual Autistic Disorder and their families and caregivers.  President Obama has nominated as a disability representative a person who, at best, views autism as a "social",or societally caused,  not a real disability, who opposes the rights of autistic children to be cured of their autism, and who marginalizes  the role, the right and the duty of parents and caregivers in advancing their autistic children's best interests.

At least  Mr. Ne'eman will be  happy. His presidential endorsement will garner him more interviews with NPR, the New Yorker, CBC, Newsweek, TIME etc., etc., etc., etc., etc., etc.  Meanwhile parents and caregivers will continue to struggle, day in and day out, to actually care for and help their autistic children, the  autistic children on whose behalf Mr. Ne'eman claims to speak.

autism

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