Autism Priorities and the DSM V: Media Ignores Invisible, Severely Autistic in DSM V Discussions

The invisible autistics, the severely autistic, those with Autistic Disorder, profound developmental delays, cognitive and intellectual deficits, those who can not live independently, who live on hospital wards and in large, antiquated psychiatric institutions do not make regular appearances in the New York Times and its junior Canadian cousin the Globe and Mail. Nor do they appear regularly on the various CBC television and radio shows that have fawned over Michelle Dawson, Amanda Baggs and more recently Ari Ne'eman.

In the big, mainstream media discussions, and opinions about the proposed changes to the developmental disorders section in the DSM V nothing has changed. Ari Ne'eman and other barely autistic, very high functioning persons with Asperger's Disorder continue to receive all the considered attention of the big media while the severely autistic remain, as always, invisible. There is scant mention in any of the mainstream media commentaries of those whose lives are most severely restricted by autism disorders. The Globe and Mail breathes hot air about "a culturally rich autism" while ignoring those severely autistic persons living in institutional care throughout Canada.

Plus ça change, plus c'est la même chose

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New York Times Examines Autism and the DSM V, From an Aspie Perspective, Of Course

Perhaps the New York Times is about to shock me and publish an article discussing potential changes to the "autism spectrum" of disorders in the DSM V from the perspective of the impact such changes might have on the lives of those with severe autism, from the perspective of low functioning persons with Autistic Disorder, like my son, Conor Doherty. For now though, like almost every mainstream media article or opinion piece discussing the "autism spectrum" it has done so from the perspective of those on the High Functioning end of the spectrum. The NYT mentions, but does not explore, the impact on the more severely affected of proposed changes to the "Autism Spectrum" of disorders in the DSM V.

In A Powerful Identity, a Vanishing Diagnosis the NYT focuses on the possible loss of the "Aspergers" label by inclusion of Aspies in an autism spectrum divided by levels of severity without reference to the Aspergers label. Ari Ne'eman is referenced talking about the importance to him of being on the Autism Spectrum:

"My identity is attached to being on the autism spectrum, not some superior Asperger’s identity. I think the consolidation to one category of autism spectrum diagnosis will lead to better services."

The NYT has, once again, found it within itself to discuss autism in terms of the most fortunate amongst the "autistic", those for whom one of the most serious issues is a question of identification with one label as opposed to another. The NYT, as it and the mainstream media at large, almost invariably do, provides little comment on the lives of the most severely affected by autism disorders, the many persons with Autistic Disorder who are low functioning, some with Intellectual Disabilities, some who do not understand the world in which we live on anything but the simplest level, some with very limited comprehension of language ... some of whom live out their lives in residential and institutional care.

The New York Times did mention that the proposed changes to the DSM will possibly include express description of various conditions which often accompany autism disorders, such as "anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise". The Times studiously avoids any express reference to the persons with Autistic Disorder and Intellectual Disorder. A sure sign of the success of the High Functioning Autism and Aspergers groups efforts to prevent any discussion of autism in connection with intellectual deficits.

The NYT quotes Dr. Temple Grandin on the dominance of the Aspergers advocacy groups in dominating public discussion of autism: The Asperger community is a big vocal community, "a reason in itself” to leave the diagnosis in place. For many parents and family members of severely autistic children Dr. Grandin's comments are not news.

This NYT piece itself reflects the domination of autism in the public mind by Aspergers and High Functioning Autism and the exclusion of the Low Functioning, Intellectually Disabled and severely autistic persons with Autistic Disorder.

Organizations such as Autism Speaks are routinely targeted by the big vocal Asperger community for realistically and honestly depicting the life challenges faced by the severely autistic. An even bigger indication of Asperger community dominance occurred when Autism Speaks "kow towed" to this community and pulled its "I Am Autism" video from its web site.

For the NYT, and for Autism Speaks, it is now far more important to talk about Ari Ne'eman's sense of identity than to talk about the severely autistic children who go missing or those who live their lives dependent on the care of others.

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Autism Severity

The DSM V committees drafting revisions to the manual are considering distinguishing between autism disorders based on severity or level of functioning. Some autism "self" advocates have long complained about distinguishing between functioning levels of autism disorders based on functioning labels - HFA, high functioning autism, or LFA, low functioning autism. Some object to the division of autism disorders according to severity.

The DSM-IV already implicitly recognizes these differences by specifying with respect to Aspergers Disorder that:

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

Language, cognitive development, age-appropriate self-help skills, adaptive behavior (other than in social interaction and childhood curiosity about the environment are all basic elements of functioning in the "environment" .... in the real world. By definition persons with Aspergers Disorder diagnoses do not lack these important elements of real life functioning ability. The criteria for Autistic Disorder by contrast is based in part on the presence of some or all of these components of real life functioning. The persons who suffer from Autistic Disorder are by definition more severely affected by autism deficits than persons with Aspergers Disorder.

My son Conor is severely autistic. That is a fact of life with which we have to deal every minute of every day. He does not possess the communication skills or understanding of the world displayed by Michelle Dawson, Amanda Baggs or Ari Ne'eman. These people can communicate with the world and demonstrate intellectual skills and understanding of the world far beyond what can be imagined for my son. It is silly, just plain silly, and nothing more than that, to pretend that there are not significant differences in functioning levels and understanding between these three examples of high functioning autistic persons who have spent much time in front of television cameras articulating their views of autism disorders and the world and my 13 year old son who reads Dr. Seuss and can not, for his own safety, be left unattended.

As I understand from the Internet Ms Baggs was either at, or about to enter, a college for gifted youth at a similar age. Ms Dawson is a person who, in addition to being an excellent letter carrier in the very challenging world of Canada Post, was able to become an autism researcher, make representation to the Supreme Court of Canada (where she opposed government provision of ABA treatment to autistic children) and to a Canadian Senate committee examining autism treatment and funding issues. Ari Ne'eman is the head of an organization based in Washington DC who regularly appears before cameras, and meets with political and public bodies, declaring on behalf of all autistic persons, including presumably my son and other autistic persons like Jake Crosby and Jonathan Mitchell, that "they", autistics, do not want to be cured.

As a parent of a much more severely affected son with autistic disorder I am tired of the silly attempts to deny the obvious differences between those who can function well like Dawson and Ne'eman and those like my son who require 24 hour supervision. I have visited adult autistic persons living in psychiatric facilities in New Brunswick who can not function in the real world AT ALL let alone make representations to judicial, political and legal institutions or engage in autism research or advocacy.

My son can not speak to the world. But Ari Ne'eman, Amanda Baggs and Michelle Dawson do not speak for him. They do not share his realities. They are not affected by autistic disorder as he is and they show no real awareness of the very real differences between his reality and theirs in their sweeping generalizations about autism and what "autistics" want.

The DSM V committee attempt to distinguish between levels of autism severity or functioning is a step in the right direction. Look for a determined effort from Mr Ne'eman, Ms Baggs and Ms Dawson, and their followers, to oppose that direction. After all, if the obvious differences between high functioning persons with autism and those, like my son, who do not enjoy their gifts, are expressly acknowledged, the self appointed "self" advocates ability to speak on behalf of those much less fortunate autistic persons would be seriously diminished in the eyes of the public and more importantly in the eyes of reporters from the CBC, CNN, the New Yorker Magazine and Newsweek who cater to their wishes.

Focusing on differences in autism severity would, however, bring needed attention to the challenges faced by the severely autistic some of who currently live out their lives in institutions. A couple of years ago a middle aged autistic woman in New York was regularly abused by staff but could not communicate with the world to tell of the abuse. The matter came to light because of a conscientious staff member and video recordings which captured some of the abuse. The plight of that woman, her life challenges and realities, are much different that those of the high functioning autistic media stars who barely acknowledge the existence of the severely autistic and do not display any understanding of their realities.

If the DSM V does differentiate between autism disorders based on functioning levels, or severity levels, it will be a much needed step toward helping those severely autistic who can not speak for themselves. It will help to ensure that their needs, so different than those of media trotting, high functioning "self" advocates will be met. It will be a much needed step in the right direction.

It is time for the low functioning, severely autistic, to be acknowledged and their needs addressed.

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Autism Diagnoses: DSM V Should Separate Autistic Disorder from Aspergers and HFA

There are two major problems with the current DSM categorisation of Pervasive Developmental, or Autism Spectrum, Disorders. One is the lack of any relevant distinction between Aspergers Disorder and those with higher functioning PDD-NOS and autistic disorders.

The other DSM problem which generates much unnecessary conflict is the inclusion of these various disorders on a "spectrum".

This inclusion of substantially different disorders, with wildly different challenges, in one "spectrum" of disorders implies that the very serious challenges of persons with Autistic Disorder who lack a fundamental understanding of the world, who have very limited abstract thought and who have very little in the way of communication skills are somehow fundamentally similar to persons with good to excellent facilities in all these crucial areas of life.

The intellectual, understanding and communication deficits of the severely autistic should be recognized in a category separate from the high functioning persons who live in the media spotlight and purport to speak on their behalf, even while they deny their existence, and complain that honest description of their realities by loved ones constitutes stereotyping and "pity partying".

Research is resulting in more and more people describing autism in the plural as autism disorders with different causes and different possible treatments. The life realities for those with severe Autistic Disorder are much different than those of Ari Ne'eman, Dora Raymaker, Alex Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other high functioning "autistics" and "Aspergians". The real life challenges of these two groups are very, very different and the DSM should reflect those differences.

As an added bonus if the DSM V modified its autism spectrum as suggested, ASAN and other HFA and Aspergers groups would not have to feel embarrassed by lower functioning, more severely affected persons with Autistic Disorder. My son Conor, who I love dearly, is one of those lower functioning, severely autistic persons that the Neurodiversity crowed is embarrassed by. I speak honestly about his challenges. I do so as the father that has loved and cared for him for 13 years and will do so as along as I am alive. I do not see his autism realities, his real life challenges and prospects reflected in the ideology and rhetoric of the "autism is a culture, a natural variation" crowd at ASAN.

It is time for the DSM to get realistic about the Autism "Spectrum".

It is time to merge High Functioning autism disorders with Aspergers Disorder and separate them from Autistic Disorder.

It is time for the DSM to recognize the importance of levels of ability to function in and understand the world and to reflect those levels in their classification of development disorders.

I say this on behalf of my son with Autistic Disorder and profound developmental delays. I say this as the person with the legal and moral right to speak on his behalf since he cannot.

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