Showing posts with label Dr. Bryan King. Show all posts

DSM-5 Autism Emperors' Ridiculous Assumption


"The fifth edition of the diagnostic and statistical manual of mental disorders (DSM-5) (APA in diagnostic and statistical manual of mental disorders, Author, Washington, 2013) has decided to merge the subtypes of pervasive developmental disorders into a single category of autism spectrum disorder (ASD) on the assumption that they cannot be reliably differentiated from one another."

LY Tsai, M. Ghaziuddin (JADD 2013) DSM-5 ASD Moves Forward into the Past



I agree with the observations of Tsai, Ghazuiddin and Dr. Waterhouse.  I have none of their outstanding academic and research  qualifications.  I am a humble Canadian labour lawyer, the father of a severely autistic 17 year old son, with "profound developmental delays" who has, like 25% of those with severe autism and intellectual disability also suffered from serious grand mal seizures.  My 17  year old son, who I love dearly, whose joyful visage adorns the sides of this blog,  reads at a Dr. Seuss level.  He is not autistic in the manner of a Michelle Dawson who appeared at the Supreme Court of Canada to argue as an "autistic" against the parents from British Columbia who were seeking Medicare coverage for evidence based ABA treatment for their autistic children.  My son is not autistic in the manner of an Ari Ne'eman who graduated from university, founded a corporate entity called ASAN, participates as a member of the IACC and lectures journalists on what it means to be autistic in a meeting of the Washington press corps.

I don't have the academic autism credentials of the distinguished names mentioned above.  I do have credentials as an autism father who has loved and cared for a severely autistic son for 17+ years. I have credentials as an autism advocate who, in my home Canadian province of New Brunswick, has advocated with other parents with success for early evidence based intervention for autistic children, autism trained Teacher Assistants and for the continuation of a tertiary care autism center for NB children and youth when threatened with closure by bureaucratic decree.  In my continuing advocacy for autistic adults I have visited psychiatric hospitals where they have lived in the absence of a residential care system to meet their needs. I have conducted many meetings with other autism parents as the Autism Society New Brunswick and met many autistic children and adults from my son's severe end of the spectrum to the very high functioning "Aspergers" end. 

What my experience, what my daily life for 17+ years has always told me, is that there are vastly different realities facing those on the autism spectrum. There is no evidence justifying the lumping together of these hugely different realities under the label Autism Spectrum Disorder.  To borrow the words of Dr. Waterhouse autism to any reasonably informed observer is marked by heterogeneity and complexity.

As Tsai and Ghazuddin have said the DSM-5 ASD is counter to evidence and is based on the assumption that "they cannot be reliably differentiated from one another."  

That assumption is not just wrong. It is in the humble opinion of this informed autism father a ridiculously false assumption.

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Catherine Lord Confesses: DSM-5 Autism Spectrum Disorder Intended To Exclude Intellectually Disabled


"Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the [DSM-5 autism] revisions, said that the goal was to ensure that autism was not used as a “fallback diagnosis” for children whose primary trait might be, for instance, an intellectual disability or aggression." [Bracketed terms added for context - HLD]

- Dr. Catherine Lord, as reported by NYT High Functioning Autism/Asperger's reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

The above reference to, and quote of, Dr. Catherine's Lord about the DSM-5 committee's intent to exclude intellectually disabled from further autism diagnosis was important journalism by Amy Harmon even if it was simply an inadvertent by product of her exploration of HFA and Asperger's in the DSM-5's New Autism Spectrum Disorder.  Ms Harmon has shown considerable interest in HFA and Asperger`s while largely ignoring those severely affected by autism disorders.  To here credit her article about worried observers relates primarily to those high functioning groups but did cough up the above confession by Dr. Lord.  Ms Harmon consistent with her slant towards covering High Functioning Autism  then moved on and glossed over the admission by Dr. Lord.  In Amy Harmon World as in Dr. Catherine Lord`s DSM-5 the intellectually disabled just don`t count and will be excluded from the Brave New Autism Spectrum Disorder.

To my knowledge I am one of the first, and few, persons to comment on the intentional exclusion of the intellectually disabled from the autism spectrum in the DSM-5; despite their historical presence on the "spectrum"` as a vast majority of those with classic Autistic Disorder. One person who pursued my concerns was Lisa Jo Rudy, then of the About.com autism site, who obtained the following information from Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group:

"My Question for Dr. King


There seems to be a desire to remove people with "Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays" from the ASD category. Does this mean that a child with Mental Retardation (also called Intellectual Delays) no longer qualify for an Autism Spectrum diagnosis? Would that person wind up dually diagnosed with Intellectual Development Disorder and social communication disorder rather than with an ASD diagnosis?


His Response


There is no explicit desire , however, by creating more specificity we believe that people may be given diagnoses that better capture their individual conditions. The qualifier above about general developmental delays ensures that the social communication deficits are more specific, and also potentially allows for earlier diagnosis if appropriate.


Just as typically developing infants and toddlers are able to engage in very rich social communication and interaction across contexts, appropriate to their developmental level, so too most individuals with intellectual delays or disabilities are also able to communicate. On the other hand, significant deficits in social communication in toddlers may suggest the presence of autism. What the criterion above is meant to ensure is that clinicians take into account what is typical in terms of social communication abilities at a given age or developmental level, and not assume, for example, that a lack of social perception in a teenager with intellectual disability not automatically suggest the presence of autism. As is currently the case, some individuals with Down Syndrome may also meet criteria for autism; but most will not."

When I read Dr. King`s reply to Lisa`s question I was skeptical. I had difficulty rationalizing his answer with the express wording of mandatory criterion A of the DSM-5`s new Autism Spectrum Disorder which requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Dr. King stated that it was not the DSM-5 committees`s intent that children with mental retardation (now to be known as Intellectual Developmental Disorder) would be disqualified from receiving an Autism Spectrum Disorder diagnosis.  Dr. Catherine Lord`s appears to say exactly the opposite.  Dr. Catherine Lord takes issue with the Volkmar data base and study that has prompted the current fears over exclusion of persons with HFA and Asperger`s from a DSM-5 Autism Spectrum Disorder diagnosis.

Dr. Lord is undoubtedly correct and Amy Harmon and the New York Times need not worry.  The DSM-5 targets for exclusion from the new ASD diagnoses are not those with HFA and Asperger`s.  Those who will be excluded are the invisible autistics who are not featured in the NYT or in Hollywood movies.



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Confirmation DSM-5's New Autism Spectrum Disorder Will Exclude Intellectually Disabled


I have written previously that persons who presently have autistic disorder or PDD-NOS and who are also intellectually disabled will be removed from the DSM-5's New Autism Spectrum Disorder. Whereas those with intellectual disability once constituted autism's vast majority as described by CDC autism expert Dr. Marshalyn Yeargin-Allsopp the 1994 addition of Asperger's Disorder reduced their numerical weight on the autism spectrum.  With the new DSM-5 wording has intentionally been added to the definition of autism to exclude persons with intellectual disability from autism diagnoses. 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."  Now, an email exchange between Lisa Jo Rudy of About.com autism spectrum disorders and Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group confirms that the effect of the DSM's New ASD will be to exclude at least some persons with intellectual disability from an autism spectrum disorder diagnosis:



"My Question for Dr. King

There seems to be a desire to remove people with "Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays" from the ASD category. Does this mean that a child with Mental Retardation (also called Intellectual Delays) no longer qualify for an Autism Spectrum diagnosis? Would that person wind up dually diagnosed with Intellectual Development Disorder and social communication disorder rather than with an ASD diagnosis?


His Response

There is no explicit desire , however, by creating more specificity we believe that people may be given diagnoses that better capture their individual conditions. The qualifier above about general developmental delays ensures that the social communication deficits are more specific, and also potentially allows for earlier diagnosis if appropriate.

Just as typically developing infants and toddlers are able to engage in very rich social communication and interaction across contexts, appropriate to their developmental level, so too most individuals with intellectual delays or disabilities are also able to communicate. On the other hand, significant deficits in social communication in toddlers may suggest the presence of autism. What the criterion above is meant to ensure is that clinicians take into account what is typical in terms of social communication abilities at a given age or developmental level, and not assume, for example, that a lack of social perception in a teenager with intellectual disability not automatically suggest the presence of autism. As is currently the case, some individuals with Down Syndrome may also meet criteria for autism; but most will not."


There may or may not be an "explicit desire  to move anyone in to or out of specific diagnostic groups" but the wording is being added intentionally to achieve a specific result and it is clear that the intended result is that social communication deficits be more specific that is .... not part of social communication deficits arising in cases of general developmental delay.

The DSM-5's New Autism Spectrum Disorder will add more persons on the high functioning Asperger's end of the spectrum and will reduce the numbers at the lower intellectually disabled end of the spectrum. The vast majority of the original autism described by Dr. Marshalyn Yeargin-Allsoop has been given the boot, kicked off the autism spectrum entirely, or nearly entirely.

There will be no Intellectually Disabled allowed on the DSM-5's New Autism Spectrum.

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