For CNN and Francesca Happé Adult Autism Is A Bouquet of Pretty Pink Flowers

Update: CNN refused, on its comment section,  my brief criticism of its exclusion from its 

"autism is growing up" presentation of  severe,  low functioning autism.

CNN which loves to portray high functioning autism and Aspergers as autism has done it again with a feature called "Autism Is Growing Up" which ... of course ... features only adult persons with High Functioning Autism and Aspergers.  In fact CNN and its accomplice Francesca Happé present 7 full stories of persons with high functioning autism and Aspergers. In addition an 8th adult with Aspergers, Canadian Zoey Roberts, is featured on the opening page of this creative portrayal of Aspergers as autism telling people that "autism is not a tragedy" which of course it isn't if you happen to exist on the very high functioning end of the spectrum, if you are not one of the 50% of persons with autism disorders estimated by the World Health Organization to also  suffer from intellectual disability, or if you are not one of the many who suffer from seizures, self injurious behavior, wandering into traffic or ill physical health that many with severe autism suffer from.

CNN has done this wonders of  autism stuff before and it is not surprise that it is at it again.  In order to lend the presentation credibility though it has brought in a collaborator Francesca Happé whose credentials are well known to anyone familiar with autism research to any extent and which are presented by CNN:

"Editor's note: Francesca Happé is president of the International Society for Autism Research, a professor of cognitive neuroscience, and director of the MRC Social, Genetic and Developmental Psychiatry Centre at the Institute of Psychiatry at King's College London. Opinions expressed in this article are solely those of the author."

For Francesca Happé and CNN autism is no longer just about autistic children it is also about adults ... but only adults with Aspergers and Very High Functioning Autism. 

For Happé and CNN the severely autistic who do not live independent lives or have high IQ's or special talents, who live in the care of others, including in institutional care, remain invisible, they remain the unwashed, the  unwanted, about whom the public must not know.

For Happé and CNN adult autism is not a disorder ... it is a bouquet of pretty, pink flowers.

DSM or ICD, Either Way Autism is a DISORDER, or Group of Disorders, Not "Just a Difference"

There are a number of very high functioning persons claiming to be autistic or claiming to have a "syndrome" or "different way of thinking".  Autism is a difference not a disorder they cry out in anger against all efforts to find treatments and cures, such efforts usually led by parents and family members of severely autistic children and adults.  The great mystery to me is why they embrace the term "autism" to describe their "difference" but reject the label as representative of a medical diagnosis or disorder.

In my humble opinion it is very unfortunate that both the DSM-5 and the ICD-10 group the former Autistic Disorder, PDD-NOS and Aspergers Disorder/Syndrome under one label Autism Spectrum Disorder.  It if unfortunate that the differences between extremely high functioning, successful academics and business persons are grouped together with the 50% of the "autism spectrum" who suffer from intellectual disability many of whom will live out their lives in some form of adult care from group homes to psychiatric hospitals. 

One of the unfortunate results of the combining of these neurodevelopmental disorders, which actually began in earnest in the DSM-IV, is that some of the very high functioning persons, usually with Aspergers, attack all those including parents and other family members fighting for treatments and cures for their own family members with severe autism disorders.  These high functioning "auties" and "aspies" as some like to be called make good spokespersons for governments and organizations seeking to downplay the very severe challenges faced by those on the severe end of the autism spectrum.

One of the most puzzling aspects of the spectrum is the earnestness with which some of the anti-cure, anti-treatment, anti-family high functioning autistic persons claim that they do not have a DISORDER. It is puzzling because autism exists as a medical diagnosis, referred to as an Autism Spectrum DISORDER under BOTH the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, and the ICD-10 Classification of Mental and Behavioural DISORDERS.  When and why did these individuals come to call themselves autistic if it was not done pursuant to medical diagnosis under one of these two leading diagnostic manuals or predecessor editions?

When my son with a severe  Autism Spectrum Disorder intentionally puts his hand through a glass window pane as he did last week, and has done in the past, it means that his autism is a disorder, not just a difference.  When my son goes from enjoying his activity on a swing set to hitting his head repeatedly, and with force, as he has done on many occasions it  means that his autism is a disorder not just a difference.  I have seen this lack of understanding and compassion and lack of respect for the views of parents and other family members who care for severely autistic loved ones from some  high functioning autistic persons for over a decade of autism advocacy.  I do not expect them to change, to abandon their adoration for the label autism. I do not expect them to recognize that those with severe autism actually suffer from a disorder.  My discussions with such individuals has given me no indication they would ever change their views on this subject.

What I would hope is that some day, academics and practitioners who have promoted the careers and perspectives of high functioning autistic persons and trivialized the challenges faced by those who suffer from severe autism disorders will start showing some integrity and professional responsibility whether they live in Montreal, Canada, New York, USA or Sydney, Australia. What I hope is that all academics and professionals will stop trivializing the severe challenges faced by so many with autism disorders and tell the world the whole truth about autism DISORDERS.

Autism is a disorder or group of disorders. Your professional and academic associations have said so and if you don't agree at least don't worsen the lives of the severely autistic for whom you lack interest or compassion; stop misrepresenting autism to the world as a gift or "just a difference". 

SFARI, Once Again, Continues Misrepresenting High Functioning Autism/Aspergers Only Research As "Autism" Research

SFARI blog article depiction of a resting "Autism" brain accompanying

 review of study employing only Aspergers subjects as representing 

"autism" for comparison with non autistic resting brains

SFARI continues its agenda of misrepresenting high functioning autism/aspergers only studies as representing "autism".  It has published, on its blog page, several study reviews employing only high functioning autism or Aspergers subjects as "autism" studies, knowing that the "Autism Spectrum Disorder" is marked by substantial variation, complexity, heterogeneity.  The World Health Organization, September 2013 indicated that 50% of persons on the "autism" spectrum also have intellectual disabilities.  The fact that intellectual disability is so heavily represented on the autism spectrum  has been known to extremely well informed, exceptionally intelligent sources like SFARI for decades as articulated by CDC autism expert Dr. Marsha Lynn Yeargin-Allsopp who stated that the intellectually disabled represented the "vast majority" of persons on the pre-DSM-IV autism spectrum. Yet SFARI  publishes articles and titles  equating "Aspergers" or "high functioning autism" with the entire autism spectrum as it has done again with its review of a study of activity in resting "autism brains" (emphasis added):

'Resting' autism brains still hum with activity

Maia Szalavitz

21 February 2014

"Even at rest, the brains of people with autism manage more information than those of their peers, according to a new study that may provide support for the so-called ‘intense world’ theory of autism.

The research, which was published 24 December in Frontiers in Neuroinformatics, included nine children with Asperger syndrome, aged between 6 and 14 and ten age-matched typical children. The researchers scanned their brains using magnetoencephalography (MEG), a noninvasive method that doesn’t require lying in a noisy, confined space as magnetic resonance imaging does.?"

SFARI publishes a disclaimer on the bottom of its blog page stating that "News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation." The disclaimer may well provide SFARI with protection against any hypothetical legal liability for the contents of its blog pages but it does not change the reality that SFARI determines who can publish on its site and is helping to promote a gross misrepresentation of the nature of autism disorders by helping equate Aspergers with the entire autism spectrum a task already, unfortunately,   under way with the DSM-5 unified description of the various autism disorders. 

I also understand very well, as the father of a son with severe autism disorder and intellectual disability, now 18, that the inclusion of persons with severe, low functioning autism in MRI studies would be extremely difficult and probably impossible.  Articles that use only Aspergers or High Functioning Autism should be described in those terms throughout the article and title and conclusions should not be drawn about persons whose intellectual disability precludes their participation in the study.    

SFARI's failure to ensure that writers using their site privileges do not generalize to the entire autism spectrum of disorders studies involving only High Functioning Autism/Aspergers subjects is not supported by evidence and is irresponsible.  

Autism Action Network: It Started: DSM5 Used To Revoke Autism Diagnosis

The Autism Action Network reports, in It started: DSM5 used to revoke autism diagnosis,  that the revoking of autism diagnoses under the DSM5 regime and the resulting denial of services and educational placements for people with autism disorders has begun.   Here in Canada the Childrens' Hospital of Eastern Ontario, CHEO, has excluded from its autism early intervention program a child it described as having global developmental delay, the express exclusionary phrase used in the DSM5 Autism Spectrum Disorder diagnostic definition.  Swedo, Lord and company were warned this would happen and stubbornly insisted that their vision of autism be imposed on the lives of children who would have otherwise received DSM-IV autism diagnoses.  Presumably they are happy to see the results of their efforts.

It started: DSM5 used to revoke autism diagnosis 

Share your story to stop the DSM5 

As many of us expected, the new definition of “autism” laid out in the Diagnostic and Statistical Manual, Fifth Edition (DSM5) is being used to deny services and educational placements to people with autism. We are receiving more and more reports from around the US (Buffalo, Dallas, Utica, etc.) of schools, Medicaid providers, insurance companies and local government service providers using the DSM5 to deny services to people who have an autism spectrum disorder. 

If you are facing difficulties or the loss of services as a result of the DSM5 please let us know. Please contact us atjgilmore@autismactionnetwork.org with your stories. Your stories will be a crucial component in stopping the DSM5. 

All the studies on how the DSM5 will affect people with autism have shown huge numbers will lose their diagnosis, their services, Medicaid and educational placement along with it. One study from the Child Study Center at Yale University showed a 55% reduction, including 30% of those categorized as low-functioning.

We have had bills introduced in several states including New York, New Jersey and Connecticut to require the continued use of the DSM4 and other diagnostic tools such as the ICD. We are working on getting bills introduced in other states. Illinois has already passed legislation prohibiting the use of the DSM5 to deny services. And we are working to prevent the federal government from using the DSM5. 

The DSM5 discards the labels of “Asperger syndrome” and “pervasive developmental disorder not otherwise specified (PDD-NOS)” Schools and insurance companies and Medicaid providers are using these changes to tell people who have an Asperger’s or PDD-NOS diagnosis that they no longer have “autism” and are losing insurance coverage, placements in special education and other services. 

The DSM5 is wrapped in controversy. The federal National Institute of Mental Health considers the DSM5 so flawed that they will not spend any research dollars on studies that use it. We do not have to put up with this. 

Please share this message with friends and family and please post to Facebook and other social networks.

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? 

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?