Autism Advantage? NO! Conor Advantage? YES!

If you have been to this blog before you know that I talk about autism as a disorder   not as an advantage. If someone does not have any deficits in daily functioning ability then, by everything I have read in the DSM's, and in materials written by psychologists, psychiatrists and pediatricians working with, and diagnosing, autistic children and adults they should not have one of the "autism spectrum disorder" diagnoses. It is my deeply rooted belief that it is important to speak honestly about autism and the challenges it presents, particularly for those persons who are severely affected by autism. I do not believe that autism, a mental disorder, is an advantage and my commentaries reflect that belief.

That does not, however, mean I agree with the flimsy argument that describing autism challenges honestly means that I am not recognizing the rights of autism persons or recognize that an autistic person has any intrinsic value as a human being. That argument is based on nothing more than ideological rhetoric.

I love my severely autistic, low functioning son Conor very much. I care for him 24/7 and have done so during his nearly 16 years. I speak honestly about his many deficits and challenges including his intellectual disability, his self injurious behavior,and his inability to function independently in daily life. But none of those things mean that I do not recognize his intrinsic value as a human being. That ludicrous argument is contradicted by the care I have given, and the commitment I have made to him, every day of his nearly 16 years. There is nothing exceptional about what I have just said. Parents almost uniformly make sacrifices every day for their autistic children, every day. I am just one of many, many thousands of parents who make those same commitments to our autistic children.

I also recognize the contributions to my life that my autistic son makes every day of his life. He is without any reservation a great joy in my life. Where I differ from some parents is that I do not believe that the joy my son brings to my life, unlike his very serious challenges, arises from his Autistic Disorder (his actual diagnosis). My son brings me joy on his own terms because of who he is as an individual. Those who would say that his smiling face, as shown on this site, is a feature of his autism rather than a feature of his own distinct personality as Conor Doherty do not know him. I do. And I love my time with him; especially our almost daily walks.

The pictures that follow were taken this morning. It is routine for Conor and Dad to go for trail walks, except when winter has arrived with full snow packed force. This morning Conor was in Run, Jump, Fly mode and had to wait several times for Dad to catch up. I enjoyed the walk. I enjoyed the outdoors. I enjoyed the Conor advantage.

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The New Autism Spectrum Disorder (NASD) in the DSM-5: Autism Minus Intellectual Disability

The CDC web site introduces Autism Spectrum Disorders with some basic autism facts, including facts about Autistic Disorder and Intellectual Disability, which are being ignored by the American Psychiatric Association in its proposed revisions to the Pervasive Developmental Disorders (which will now formally be called Autism Spectrum Disorder) section of the DSM-5.  One simple, but very important,  fact which the APA will hide is the fact that  many people with Autistic Disorder, the classic "autism",  also have an Intellectual Disability.

It is these people with Autistic Disorder and Intellectual Disability who have the most severe symptoms.  They will not typically author internet blogs, preside over corporate boards, conduct research, hold media interviews or mingle with Washington DC politicians and bureaucrats.  Those diagnosed today with Aspergers and mild PDD-NOS will be the faces of the New Autism Spectrum Disorder in the DSM 5 a transition which is already well underway with the Hollywood, the Mainstream Media and, in President Obama's administration, appointment of a hard line anti autism cure person with  high functioning Aspergers to a high profile disability council position. The classic instances  of Autistic Disorder with Intellectual Disability will be fully excluded from the New Autism Spectrum Disorder.

"ASDs are “spectrum disorders.”  That means ASDs affect each person in different ways, and can range from very mild to severe.  People with ASDs share some similar symptoms, such as problems with social interaction.  But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.

• Autistic Disorder (also called “classic” autism)
  This is what most people think of when hearing the word “autism.”  People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.

• Asperger Syndrome
  People with Asperger syndrome usually have some milder symptoms of autistic disorder.  They might have social challenges and unusual behaviors and interests.  However, they typically do not have problems with language or intellectual disability.
• Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)  People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder.  The symptoms might cause only social and communication challenges.
 

The CDC statement that "many people with autistic disorder also have intellectual disability" is consistent with other authorities and studies including the Canadian Psychological Association  2006 brief to the Canadian Senate which stated that  "Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average". The CPA reference to autism excludes Aspergers which is referenced separately. The statement is also consistent with the CDC's 2009 studies which found that "Data show a similar porportion of children with an ASD, also had signs of intellectual disability averaging 44% in 2004 and 41% in 2006".

  The APA is of the view that the Pervasive Developmental Disorders should be grouped into one Autism Spectrum Disorder, nominally distinguished on grounds of severity of symptoms.  In fact though the intellectual disability which characterizes many instances of Autistic Disorder, of "classic" autism, will be separated from the Autism Spectrum which will alsoreduce its focus to "social communication" and "fixated interests and repetitive behaviors".  Significant language delays will not be major diagnostic criteria for the New Autism Spectrum Disorder in the APA's Brave New DSM 5. There will be no reference, even by necessary implication to Intellectual Disability in the DSM-5's New Autism Spectrum Disorder.

It is easy to speculate about the reasons motivating the APA in seeking to remove the Intellectually Disabled, low functioning, classically autistic from the New Autism Spectrum Disorder (NASD).  The NASD will make it impossible to use epidemiological studies to demonstrate any vaccine autism connections since the very definition will have changed.  This will come in handy after the use of thimerosal laced vaccines in many areas during the great 2009 Swine Flu Panic.

Life will also be easier, and their consciences less ruffled, for those "clinicial psychologists" and researchers who focus almost exclusively on working with persons with High Functioning Autism and Aspergers.  On the research side those High Functioning Autism experts like Dr. Laurent Mottron who has published dozens of research papers involving subjects with High Functioning Autism, Aspergers and Savant qualities will now be able to truly claim to be autism experts without anyone mocking them for their obvious reluctance to study low functioning, intellectually disabled, severely autistic subjects.

Clinical psychologists will find their success rates working with autistic subjects soaring when their autistic subjects all carry the New Autism Spectrum Disorder diagnosis. Those more difficult low functioning autism cases will be relegated to the dustbins of history ... and forgotten completely in residential and institutional care facilities.  Clinical utility takes on a whole new dimension in the era of the New Autism Spectrum Disorder

It will also be handy for the Ari Ne'eman's and other very high functioning persons with Aspergers who will now be able to speak with at least a little bit of credibility on behalf of persons with the New Autism Spectrum Disorder. This is a wish granted for Ari Ne'eman, Amanda Baggs, Michelle Dawson and Alex Plank. These persons with HFA and Aspergers are high profile opponents of attempts to cure people, even other people's children, of their autism disorders.  Cementing their status as spokespersons for the New Autism Spectrum Disorder will take some pressure off of the health authorities, including psychiatrists, and "autism" researchers who do not want to spend their time and resources seeking cures for autism disorders.

In the  Brave New World of the DSM-5 everyone will be happy except the severely disabled, low functioning persons with Autistic Disorder and Intellectual Disability, the "classic" autistics ... and the parents and family members who are the only ... the ONLY ...  ones fighting on their behalf.  Members of the APA will be busy slapping each other on the back and congratulating themselves for solving the Autism Crisis in the way they know best ... by defining it away.   

The New Autism Spectrum Disorder has arrived.

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On World Autism Awareness Day Please Be Aware That Autism Is A Disorder

On  World Autism Awareness Day, April 2, remember that autism is a disorder or more accurately a group of disorders.  It is not just a different way of thinking, a way of life or a political career path for a media savvy high functioning University student with little  exposure to, or actual knowledge of the realities of  severe Autistic Disorder. 

There are indeed many very high functioning persons with Aspergers and some high functioning persons with other "autism" disorders.  There are also many persons with Autistic Disorder and Intellectual Disability and others who are generally very low functioning, who will self injure, be at greater risk from the ordinary dangers of daily life, remain unemployed throughout their lives and live in the care of others in a variety of residential and institutional settings. These are facts.  

"Autism", or what is described as autism varies.  Autistic Disorder is currently shown in the DSM IV as one of the Pervasive Developmental Disorders:

299.00 Autistic Disorder

(A)
total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

1. qualitative impairment in social interaction, as manifested by at least two of the following:
   
   
   
   

   (a)

   marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

   (b)

   failure to develop peer relationships appropriate to developmental level

   (c)

   a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

   (d)

   lack of social or emotional reciprocity

   
   
   
   
   


2. qualitative impairments in communication as manifested by at least one of the following:
   
   
   
   

    

   (a)

   delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)

   (b)

   in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

   (c)

   stereotyped and repetitive use of language or idiosyncratic language

   (d)

   lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

   
   
   
   
   
   


3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
   
   
   
   
   

   (a)

   encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus

   (b)

   apparently inflexible adherence to specific, nonfunctional routines or rituals

   (c)

   stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

   (d)

   persistent preoccupation with parts of objects

   
   
   
   
   

(B)   

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

 

(C)

The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.

As currently described Autistic Disorder is exactly what it says. It is a disorder.  Not a social movement, not a culture and not just a different way of looking at the world.

On World Autism Awareness Day please be aware that autism is a disorder, one that impairs and restricts the lives of many persons who carry the diagnosis of Autistic Disorder and to some extent those that are diagnosed with other Pervasive Developmental Disorders.

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On World Autism Awareness Day 2010 Please Remember the Original Autistics

April 2 is World Autism Awareness Day.  On WAAD 2010  I ask that you remember the original autistics.

The original autistics are those low functioning persons  who would have been diagnosed with autism BEFORE the DSM IV expansion of autism to include Aspergers disorders. Between 75-80% of the original autistics are intellectually disabled.

The  alleged autism self advocate organizations seldom include the low functioning original autistics in their portrayals of autism, they do not talk about them in polite company, when they pose for their many media interviews, or when they socialize with Washington DC politicians and bureaucrats. They object to people who describe the realities of severe autism disorders. 

The DSM5 revisions will continue the DSM IV expansion of the "autism spectrum" .... on the high functioning end of the spectrum.  At the low functioning end of the autism spectrum those with intellectual disabilites will be rendered completely invisibile, swept under the autism spectrum carpet into a separate category completely. There will be no mention of intellectual disability in connection with the autism spectrum.

On World Autism Awareness Day  remember the original autistics,  those severely affected enough by their autism  that the condition came to be known as a disorder.  Increasingly, and with the kind assistance of the DSM revisions, autism as a disorder is disappearing and being described as just a different way of thinking. Low functioning autistic persons will be swept completely into an intellectual disability category and removed from the autism spectrum.

 The decision to remove the low functioning original autistics from the autism spectrum has already been made and the public comment section of the DSM5 web site will not change that one iota.In the DSM5 era they will no longer be considered autistic.

Whether for historical reference purposes, or out of solidarity with those who are  severely affected by autism disorder, please remember the original autistics this World Autism Awareness Day.

This request is made by the father of a 14 year old low functioning autistic son. He is one of the original autistics.

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Removing Severely Autistic from the Autism Spectrum

The DSM 5 promotes the stigmatization of low functioning persons with autism disorders by excluding any reference to cognitive  or intellectual disabilities in its description of  the new categories of autism spectrum disorders.  The mainstream media has long ensured that such stigmatization prospers in the popular culture by focusing on stories of great feats by some persons with Aspergers and Autism while steadfastly ignoring the plight of the severely autistic persons living in institutional care.  In a similar vein every protest by even a handful of persons with  Aspergers and High Functioning Autism,  of "negative" depictions of autism, depictions of the realities of life faced by the severely autistic, is promoted as enlightened self advocacy by a largely autism ignorant mainstream media.

The mainstream media continues its obsession with high functioning autism and Aspergers  in discussing the autism changes in the DSM 5 with article after article about how the changes will affect those with Aspergers.  Some of that attention to the potential impact  on persons with Aspergers is certainly warranted but not to the point of refusing to  consider the impact of the DSM 5 changes on those at the severely affected, low functioning,  end of the autism spectrum, those with Autistic Disorder and Intellectual Disabilities.  

The fact that between 75 and 80% of persons with  autistic disorder, as it is currently called, the category comprised of the original pre-1994 DSM change  "autistics", also have intellectual disabilities is hidden completely  from sight in the DSM 5.   One of the signposts of stigmatization is when it is not considered polite to mention some persons or topics in polite company and the DSM 5 has ensured that the stigmatization of persons with autistic disorder and intellectual disability will continue.  

The DSM 5 pretends that ASD and ID  are unrelated, that delay or inability in understanding language is not itself  indicative of a cognitive or intellectual deficit, and  by pretending that the 75-80% of persons with cognitive disorders AND assessed  intellectual disabilities is just an amazing coincidence, one not needing discussion; one not needing  mention in the diagnostic  manuals used by psychiatrists, psychologists and general practitioners.  It is only a matter of time until persons with Autism Disorders and Intellectual Disabilities are officially excluded from the Autism Spectrum of Disorders category of the DSM.

The mainstream media has responded to the proposed changes by obsessing over the impact on those with Aspergers and, with few exceptions, ignoring the impact of the changes on the lower functioning persons with autism, those with intellectual and cognitive deficits.  The headline of one an AP article (which is one of the more balanced articles on the autism changes) highlights the media focus in reporting DSM 5 autism changes:

Proposed autism diagnosis changes anger "Aspies"

This humble blogger, and father of a 14 year old son with Autistic Disorder and profound developmental delays,  was interviewed and quoted by Lindsey Tanner  in the above noted AP article.  I appreciate her effort to provide some balance to the discussion but even that article, as the headline indicates, is focused primarily on the impact on "Aspies" of the DSM 5 autism changes.  Few other media articles showed that much balance. Not a single article focused on what  impact the changes would have on those most severely affected by autism disorders.  

Both the DSM 5 and the mainstream media have adopted a perverse triage system when it comes to discussing autism disorders. The highest priority is given to examining the impact of  official diagnostic labels and criteria on those least impaired by autism disorders first and foremost and examine the impact on those most affected later ... if ever.

The DSM has, in the DSM IV and DSM 5, been changed to expand the definition of autism to include those with Aspergers, those at the high functioning end of the autism spectrum of disorders.  Some at the high functioning end do not consider their condition to be a medical disorder even though they embrace medical terms like Autism and Aspergers. Meanwhile the original autistic persons of the DSM III are increasingly stigmatized, rendered invisible by failure to mention the most salient and disabling features of their disorders ... their intellectual disabilities and cognitive impairments.  The stigmatization of intellectual disabled, low functioning autistic persons is clearly illustrated in the Lindsay Tanner/AP article;

Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger's, fears Asperger's kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.   Grouping Aspies with people "who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?" Willey said.

The expansion of autism in the DSM IV and DSM 5 to include more and more persons barely impacted by autism will result in more identifcation of autism with giftedness in the public mind and the severely affected will be even more completely removed from public discussions of autism. It is only a matter of time until those with autism and intellectual disability are officially removed from the autism spectrum completely.  It will probably happen officially  in the DSM 6 but it is already well under way. 

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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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