Showing posts with label Asperger's Disorder. Show all posts

DSM5's Most Fundamental Flaw? Combining The Autism Disorders Into One Disorder





Autism Advocate Ari Ne'eman Speaking At the National Press Club
My  son's severe Autistic Disorder is not the same 
autism disorder as Mr. Ne'eman's.

The DSM5  autism do-over, the New Autism Spectrum Disorder, will come into effect in 2013.  There is a further opportunity to offer public comment about the radical changes being forced upon the public but the DSM5 committees who have shaped the New ASD in the image of their own research biases have shown no inclination to acknowledge the merits of any of the many criticisms of their handiwork. It does not matter whether the criticism comes from expert professionals involved with shaping previous editions of the DSM (Fancis, Volkmar)  or a stumbling, ignorant, hysterical father (moi) of a severely autistic son who has lived first hand, 24/7 for 16 years,  with the realities of severe autism and who objects to the targeting of the intellectually disabled for exclusion from the New ASD. No matter the source the  DSM5 team has not flinched and has not deviated from their own research biased views of autism.  (The DSM5 team swears that the New ASD reflects solid autism research. DSM5 autism team member Catherine Lord though  has acknowledged that autism research tends to excluded those with intellectually disability  while also confessing that the real aim of the New ASD is to exclude those same intellectually disabled from autism diagnoses.) The biggest flaw is not the possible exclusion of some at the highest functioning end of the spectrum or the likely exclusion of many with intellectual disabilities.  It is the combining of disparate disorders into one.

The biggest flaw of the new DSM5 is the combining of the many autism disorders into one disorder when even the most ignorant, ill informed and irrational of persons dealing with autism ... parents ... can see that there are huge differences between those who  have fashioned careers as public spokespersons for all persons with autism and those who can not function in daily life.  

Ari Ne'eman is an intelligent, eloquent university graduate comfortable in discussing his vast knowledge of autism before assembled groups from the US to the UK.  This young man can hobnob with the intellectuals at the IACC, state and federal politicians in New Jersey and Washington and mainstream media representatives at the US National Press Club in Washington.  He appears to be very comfortable in front of media cameras. My son at 16 has accomplished much in terms of where he started but he is still working at a Dr. Seuss reading level, working with great effort to make a full sentence, lacks understanding of the world, engages in repetitive behavior that can end with self injurious behavior.

As a father of a low functioning autistic son I can not see the deficits that  resulted in an autism disorder for Mr. Ne'eman.  As an autism advocate who has worked with and met some higher functioning kids with Aspergers whose limitations are still noticeable I can not see those same limitations in Mr. Ne'eman. I do not believe that Mr. Ne'eman's professionally diagnosed autism disorder, or the autism disorders of the members of the corporate board oranized by the very high functioning Mr. Ne'eman have any similarity to my son's diagnosed Autistic Disorder or to those with Asperger's that I have met. Still Mr N. , like his ASAN board members presumably have diagnosed autism disorders. 

What is clear though is that Mr. Ne'eman's disorder is not the same autism disorder that I have seen in my real life, daily,  experiences as a father or as an autism advocate.  In the latter capacity I have met a number of persons with Aspergers whose diagnoses are clear to anyone who speaks with them but they are still different from my sons. They are also different from the severely autistic persons I have met on visits to psychiatric hospital facilities where they reside here in New Brunswick.

I am not suggesting that Ari Ne'eman does not have an "autism' disorder.  I am not qualified to say that and I recognize that and respect his professional diagnosis.  I am qualified, as an observant human being, to say that Mr. Ne'eman's challenges are not the same as my son or many others with Autism and Asperger's that I have met.  To me I see no signs whatsoever of a disorder of any kind in Mr. Ne'eman but again I realize I am not a qualified professional  and I assume that those who provided his diagnosis were capable professionals.  Mr Ne'eman's autism disorder though does not remotely resemble my son's or other persons I have met with autism and Asperger's disorders.

In the opinion of this humble dad the combining of the various autism disorders into one disorder is a fundamental flaw in the New Autism Spectrum Disorder. 

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Autism in Russia: Pravda Misrepresents Asperger's as Autism


Like its mainstream media counterparts in the US and Canada the Russian news service Pravda is busy misrepresenting Asperger's as Autism.  In Autism: Life full of struggle and success there is mention of Asperger's as "an" autism disorder.  There is also acknowledgement of some of the challenges faced by persons with autism. But there is no mention of those who CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp  described as the "vast majority" of those with actual Autistic Disorder diagnoses; those who have autism and intellectual disabilities. The article read as a whole, including the title,  portrays those persons with Asperger's, and persons "with some traits of autism and Asperger's" who have found employment with companies like Aspiritech as representative of persons with autism:

The son of the founder Moshe Vittsberga at some point had problems finding work due to Asperger Syndrome diagnosis. For this reason, the Aspiritech undertook to help people with autism.
 According to specialists, work with computers is well suited for autistic individuals. In addition, many high-end programmers are people with certain traits of autism or Asperger syndrome.

Among professions preferred for autistic individuals are accounting, librarianship, archival work and drawing, and art. Autistic individuals are good at archeology, paleontology, and museum work.
Some people with autism are good at jobs involving visual thinking - computer-aided design, architectural modeling, industrial design, etc.


For example, in 2008, a fellow of the Massachusetts Institute of Technology Wendy Jacob founded a studio where she worked with autistic individuals to create radically new art and design solutions in the field of interior design and the design of everyday objects specifically for people with autism spectrum disorders. This is the beginning of a niche market.


Autistic individuals are also good at work associated with fulfilling certain actions at certain times. Autistic individuals do not need a team and can work quite effectively in isolation.
However, work related to rapid processing of information in short-term working memory is not suitable for them. They should avoid such areas as history, political science, business, philology, or higher mathematics.

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DSM-5 Autism Shell Game

Noun1.shell game - a swindling sleight-of-hand gamevictim guesses which of three things a pellet is under
Synonyms: thimblerig

The DSM-5 treatment of autism amounts to little more than a shell game with autism, which once referred essentially to autistic disorder being replaced with Asperger's Disorder.  Look at the description of A 09 Autism Spectrum Disorder in the DSM-5 which is referred to in the DSM-5 as a proposed revision for the DSM-IV Autistic Disorder:


A click on the DSM-5 A 09 Autism Spectrum Disorder tab for DSM-IV refers the reader to Autistic Disorder as set out in the DSM-IV leading one to think that the new Autism Spectrum Disorder is in fact just a modified version of the DSM-IV's Autistic Disorder:


The most obvious difference is in paragraph 2 which refers in the introductory line to qualitative impairments in communication. One of the sub-paragraphs which assists in fulfilling that requirement for meeting an Autistic Disorder is "delay in or total lack of the development of spoken language".  The narrowing of communication deficits from general communication deficits to social communication deficits is not just a revision, it is a re-definition of autistic disorder.  Removing this important characteristic from "autism" constitutes an essential change from Autistic Disorder, at least from the perspective of this father of a son with autistic disorder who has had both delays in language development and a lack of full language development.

As can be seen in the DSM-IV description of Asperger's Disorder removing any reference to general language delay or development renders the new Autism Spectrum Disorder much more like the DSM-IV description of Asperger's Disorder which states in paragraph D that there is no clinically significant general delay in language. The only reference to language deficit in the new ASD is in the reference to social communication, a specific not general language deficits. Again, I am a humble parent and small town lawyer not an Ivy League educated psychologist or psychiatrist but I have to assume that language and general communication developments are among the most fundamental aspects of any human's development. To remove the general language and communication deficits from Autistic Disorder and substitute social communication deficits appears to me to be a straight forward substitution of Aspergers for Autistic Disorder in defining the New Autism Spectrum Disorder in the DSM-5.


Consistent with substitution of Asperger's Disorder for Autistic Disorder is the exclusion of persons from Autism Spectrum Disorder diagnosis where the mandatory social communication and social interaction deficits required under criterion A are "accounted for by general developmental delay". I have commented on this exclusion several times and I see no other reasonable interpretation of the exclusionary language in Criterion A of the new Autism Spectrum Disorder. Criterion A effectively brings to the DSM-5's new Autism Spectrum Disorder criteria D and E of the DSM-IV's Asperger's Disorder description ... no clinically signficant delay in language and no clinically signficant delay in cognitive development.

A reasonable interpretation of the DSM-5's new Autism Spectrum Disorder is that it essentially substitutes Asperger's Disorder for Autistic Disorder. Asperger's Disorder IS the New Autism Spectrum Disorder of the DSM-5.  The language of the DSM-5 which purports to show Autism Spectrum Disorder as a revision of the DSM-IV's Autistic Disorder is misleading, whether intentional or not, and it helps conceal  under which shell the "autism pellet",  in the new DSM-5 is located. The DSM-5 new Autism Spectrum Disorder is located under the DSM-IV's Asperger's Disorder. 

The DSM-5's new Autism Spectrum Disorder is no more than a glorified shell game with low functioning, intellectually disabled autistic persons and their families the unwitting victims. The new Autism Spectrum Disorder would be more accurately described as Asperger's Spectrum Disorder with the many severely affected, low functioning, intellectually disabled autistcs of the DSM-IV excluded.. 

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Asperger's is the New Autism: No Intellectually Disabled Allowed in the DSM-5's New Autism Spectrum Disorder

"the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers for Disease Control and Prevention. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development. Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

Dr. Marshalyn Yeargin-Allsopp, Canadian Medical Association Journal,CMAJ • July 13, 2010; 182 (10). First published June 7, 2010; doi:10.1503/cmaj.109-3274  


Dr. Yeargin-Allsopp's description of the diminution of autism's vast majority, those with intellectual disability, is noteworthy today as we await the commencement of the DSM-5 era and the complete elimination from any autism diagnosis of persons with intellectual disabilities. That accomplishment will be achieved by the DSM-5's New Autism Spectrum Disorder definition and diagnostic criteria which expressly exclude an ASD diagnosis in instances of general developmental delay:


The New Autism Spectrum Disorder in the DSM-5 will eliminate any debates over the exent of intellectual disability amongst those with autism spectrum disorders.  The new definition will complete the process begun in the DSM-IV of diminishing the rates of ID amongst those with autism by changing the definition of autism to exclude those with intellectual disability.   The formula is simple and straight forward.  To be diagnosed with autism a person must meet all 4 criteria, A, B, C and D.  Criteria A requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays".   If a person suffers from "general developmental delay" that will account for persistent deficits in social communication and social interaction across contexts and the person will not meet the mandatory Criterion A and will not  receive an autism spectrum diagnosis under the new DSM-5.

General developmental delays is a reference to the DSM-5 diagnostic category of Intellectual Developmental Disorder (IDD) which is described as including a current intellectual deficit and a deficit in adaptive functioning.  IDD is further described in two of the mandatory criteria for meeting and IDD diagnosis  as including deficits in general mental abilities. IDD mandatory criterion B refers expressly to impaired functioning in areas of daily life including communication and social participation.  An IDD diagnosis then would account for deficits in social communicaiton and social interaction and preclude an Autism Spectrum Disorder diagnosis under the DSM-5


 The exclusion of an autism diagnosis for persons who are generally developmentally delayed is a substantive change from the DSM-IV  which did not exclude an Autistic Disorder diagnosis in persons who suffered from  general developmental delay, intellectual disability or mental retardation:


The exclusion of persons with Intellectual Developmental Disorders from the New Autism Spectrum Disorder does have a precedent in the DSM-IV.  It is found in the DSM-IV's Asperger's Disorder which states in Criterion E that "there is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills".  And there it is "no cognitive development delay" from the DSM-IV Asperger's Disorder criteria becomes not accounted for by general developmental delay in the DSM-5's Autism Spectrum Disorder.   Asperger's becomes the New Autism in DSM-5 World.

Autism Speaks has long been aware of the APA intention to remove persons with intellectual disability from consideration for autism spectrum disorder diagnoses. Autism Speaks rarely mentions intellectual disability as an autism concern.   It has already been busy presenting Asperger's to the public as Autism  with the promotion of the careers and influence of John Elder Robison and Alex Plank.

Autism Speaks also helped fund the Korean "autism" prevalence study of Roy Richard Grinker who has been busy recasting Asperger's as autism and who went looking for "autism" amongst Korean students who functioned well in Korea's highly structured school environments.  No intellectually disabled were included amongst Grinker's findings of  large numbers of previously unknown autistics.  Of course Professor Grinker, the APA and "Autism Without Intellectual Disability Speaks" will have to readjust their autism prevalence numbers once the DSM-5 officially takes effect.  They will have to revise their autism rates downward to reflect the removal of persons with DSM-IV Autistic Disorder and intellectual disability from the DSM-5's Autism Spectrum Disorder.  Asperger's is the New Autism. 

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High Intelligence Is Not a "Common Characteristic" of a Child with Autism


An article by Jennifer Luchesi Long at Carlsbad Patch makes the following statement about children with autism:

The following are some of the common characteristics of a child with autism:


Easy irritability with changes in routine and expectations.
Difficulty reading facial expressions.
Difficulty reading social cues and understanding social norms.
Poor eye contact.
Uncomfortable with affection, including any kind of physical touches.
Overstimulated by noises, smells and light.
Fixation on a certain subject, topic or idea.
Highly intelligent.


(Underlining added for emphasis)

No references are provided for the author's assertion that high intelligence is a common characteristic of children with autism. The claim that high intelligence is a "common characteristic" of autism is a misrepresentation of autism disorders which include Asperger's Disorder, PDD-NOS and Autistic Disorder.

Some persons with Asperger's Disorder are highly intelligent, others with Asperger's are of average intelligence.  By diagnostic definition there is no cognitive impairment in persons with Asperger's. There are also some persons with high functioning autism who are highly intelligent.

With respect to Autistic Disorder and  PDD-NOS the Canadian Psychological Association stated in a 2006 brief to a Canadian Senate committee that 80% of persons with these two autism spectrum disorders have intellectual disabilities.  That information is consistent with United States Centers for Disease Control and Prevention surveys which indicate that between 41 and 44% of persons on the entire spectrum have intellectual disabilities. These figures contradict the claim that high intelligence is a common characteristic of children with autism.

"Autism" has become, in the public mind, the autism of a few very high functioning persons with Asperger's and high functioning autism some of whom are prominent in the mainstream media.  The realities of those with severe autistic disorders are  increasingly obscured by these success stories. There are many low functioning autistic persons living in dependent care who do not have movies made about them, do not play in rock bands and run successful businesses, do not have families of their own and do not build careers as public speakers telling the public  what "autism" is. Some autistic children and adults do not understand the risks posed by daily life phenomenon such as automobile traffic or backyard swimming pools.

The romanticization of autism  impairs public understanding of this serious neurological disorder.

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Autism and Intellectual Disability: More Denial, More Stigma, This Time In Alabama


In Children with Asperger's could lose diagnostic identity we see still more evidence, this time in Alabama,  of the stigma attached to the fact that the vast majority of persons with Autistic Disorder, unlike those with Aspergers Disorder diagnoses,  also have intellectual disabilities or cognitive impairments. Once again the story tells of concerns held by some that those with Aspergers will be stigmatized by being lumped in with those with Autistic Disorder in the DSM-5  New Autism Spectrum Disorder. In expressing these concerns the subjects interviewed contribute to the stigmatization of those with Intellectual Disability generally and specifically to the many persons with Autistic Disorder and Intellectual Disability:

"It's difficult to say where Asperger's ends and autism begins," Mulvihill said.


That difficulty - and the stigma attached to autism - is partly why some adults with Asperger's are not happy about the proposed change in the DSM, Crane said. While those individuals on the high-functioning end of the autism spectrum might show only slight symptoms, those on the other end of the spectrum are profoundly affected by the disorder.


Being classified as autistic can make it even more difficult for high-functioning individuals to develop relationships with their peers.


Crane said despite their various challenges, autistic children are highly intelligent.


"These kids are definitely the scientists of tomorrow," said Crane, who established the Riley Center after her son was diagnosed with autism. "They're brilliant. That's why early intervention is so important."

The comments by Crane of the Riley Center are a perfect example of the denial that is so prevalent in any public discussion of Autistic Disorder. The main difference between Autistic Disorder and Aspergers is in the area of intellectual disability.  By definition in the current version of the DSM-IV a person with "autism" criteria AND Intellectual Disability will be excluded from an Asperger's Disorder (DSM-IV, Diagnostic Criteria for Asperger's Disorder  299.80)  diagnosis (as set out on the CDC web site):

"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.

I have written frequently on the refusal of so many parents, professionals and persons with very high functioning autism disorders to acknowedge the high rates of intellectual disability in persons diagnosed with Autistic Disorder as that disorder is currently diagnosed in the DSM-IV.  The 2006 Canadian Psychological  Association brief to a Canadian Senate committee examining autism stated that:

"Symptoms and Impairments:


• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. Persons diagnosed with Asperger’s Disorder have average to above average intellectual functioning."

The CPA figures with respect to Autism (Autistic Disorder) appear consistent with the CDC figures with respect to the entire autism spectrum:

"Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006."

The 41-44% figure for the entire spectrum includes those with Aspergers diagnoses who, by definition, do not have intellectual disabilities or cognitive impairment.  They are also approximate the numbers provided set out in the ICD-10 for persons with respect to Childhood Autism F84.0:

"F84.0 Childhood Autism

A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 
...
All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases."(Bold highlighting added - HLD) 

These figures contradict the denial of intellectual disability inherent in Crane's generalizations that "autistic children are highly intelligent", "these children are definitely the scientists of tomorrow"and "they're brilliant".  Such statements deny the reality of the close association between Autistic Disorder and intellectual disability and are clearly reflections of the stigma attached ... not to autism per se ... but to intellectual disability.  It is the connection between autism and intellectual disability that creates concern for many with Asperger's Disorder about merging Asperger's and autism in the DSM-5.  It is that frequently expressed and highly publicized concern that contributes to the stigmatization of those many persons with Autistic Disorder and Intellectual Disabilities. 

The US National Institute of  Mental Health states with respect to Autism Spectrum Disorders in the section  titled Problems That May Accompany ASD:

"Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests."

What is interesting about the NIMH comment is that it ties mental impairment to language disabilities, another area that distinguishes Autistic Disorder from Asperger's Disorder in the DSM-IV.  It is a relationship that is glossed over by those who wish to disavow the obvious relationship between autism and intellectual disability.  By contrast an Italian study, published in the Journal of Intellectual Disability Research has expressly underlined the relationship between autism and intellectual disability:

Abstract

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.

METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID. (bold highlighting added -HLD)


The denial of the Intellectual Disability connection to autism, as in Autistic Disorder, will be completed in the DSM-5 and will result in further stigmatization of those with Autism and Intellectual Disability.  It will also contribute to the trend to conduct "autism" research excluding persons with autism and intellectual disability the "vast majority" of those with autism as it is currently defined. The study reports in these cases tend to generalize their findings to the entire autism spectrum of disorders despite the exclusion of intellectually disabled autistic subjects.  The informed, mature  and enlightened approach of studying the connection between autism and intellectual disability suggested by the authors of the Italian study will never see the light of day.

The intellectual disabilities of so many with autism, and the very serious challenges they face,  will simply be ignored for fear of stigmatization. The Alabama example is only one of many examples of such stigmatization. 

There will be more.

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