Congratulations "Dr." Catherine Lord! APA's DSM5 Autism Targeted Exclusion of Intellectually Disabled Passed December 1, 2012.

The American Psychiatric Association's passage of the DSM5 and its New Autism Spectrum Disorder was passed Saturday December 1, 2012 without any of the mainstream media taking noting of the real targets, the real victims of the new Autism definition: the intellectually disabled. The media continues the narrative of Amy Harmon and the powerful New York Times that raised concerns about the exclusion of Asperger's at the High Functioning end of the spectrum but ignored, as media and health care professionals so often do, the targeted exclusion of those with severe intellectual disabilities from the autism spectrum even where those ID's are accompanied by EVERY SINGLE CRITERION listed in the new ASD. 

It is true that Asperger's is now formally forced into the same spectrum as  persons with lower functioning autism and that the name disappears but with the removal of those with Intellectual Disability what remains is essentially Asperger's under the autism label. There is no substantial difference between the DSM-IV Asperger's and the DSM5 Autism Spectrum Disorder.  Both criteria are notable  for  the exclusion of those with intellectual disability.  In the DSM-IV persons with intellectual disability and autism were excluded from an Asperger's diagnosis but included in autism.  In the DSM5 those with Asperger's are rolled into autism but the severely intellectually disabled are forced out.  The ID'd are included in a separate intellectually disabled category but that does nothing to bring attention to address their autism symptoms. They are now excluded by the only targeted exclusion of the DSM5 Autism Spectrum Disorder:

""Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:"

Dr. Catherine Lord leader of the APA team that redefines and streamlines autism to exclude those with severe intellectual disability confessed that very fact in the interview with the New York Times' Amy Harmon:

"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 reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

In the DSM5 the APA is taking another giant step in its process of streamlining autism by excluding the intellectually disabled element of what is in fact a pervasive developmental disorder or grouping of symptoms. It is redefining autism, a grouping of symptoms which included intellectual disability in many cases, to remove it from that grouping.  Intellectual Disability is in fact present in the majority of cases of DSM-IV Autistic Disorder, the only specifically designated "autism" in the DSM-IV which also represents the classic, original autism:

"the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. 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."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp

The 40% figure is for the entire autism spectrum, inclusive of those with Asperger Syndrome who are by definition not intellectually disabled. It is in the original classic autistic disorder where the ID'd constituted the vast majority, estimated by the Canadian Psychological Association in its 2006 brief to a Canadian Senate committee as approximately 80% of those with autistic disorder.

The language of the new DSM5 autism clearly targets the exclusion of the intellectually disabled.  Catherine Lord acknowledge that the exclusion is intentional.  La Malfa, in one study concluded that the relationship should be explored, not ignored, as the DSM5 aims to do.  

One possible reason for the exclusion is that autism research has often as Dr. Catherine Lord herself has acknowledged, tended to exclude the intellectually disabled as participants in autism studies:  

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families

This trend has probably been enhanced by the use of technology like MRI's that are difficult, very difficult, to use with those who are severely intellectually disabled.  As a parent I have to confront that reality right now in terms of examinations of my son arising from his recent Grand Mal seizure.  Unlike parents, researchers aiming to get grant money and complete autism studies can ignore the realities presented by those with autism and severe and profound intellectual disabilities.  

The great accomplishment of the DSM5 Autism Spectrum Disorder redefinition of autism will be to legitimize the exclusion of those with severe intellectual disability from autism research.  

Congratulations APA! Congratulations "Dr" Catherine Lord!

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APA Ignores Concern Over DSM-5 Autism Exclusion of Intellectually Disabled

On July 17 2011 I made a submission to the Neurodevelopmental Disorders DSM Work Group of the American Psychiatric Association.  My submission dealt at length with the exclusionary language added to Mandatory Criterion A of the DSM-5 Autism Spectrum Disorder, language which targets for exclusion from autism diagnosis of persons with intellectual disability.

Since that submission the NYT's Amy Harmon who, like most of the mainstream media when reporting on autism, focuses on high functioning autism and Aspergers, questioned the workgroup's Dr. Catherine Lord about the possibility that the DSM-5 ASD would exclude many higher functioning autistic persons. In the course of that interview Dr. Catherine Lord confessed that there was nothing to worry about that the real exclusionary target of the DSM-5's proposed Autism Spectrum Disorder diagnosis was the 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

Yesterday I received an email form response to my July 17 2011 submission from David Kupfer, M.D.,Chair, DSM-5 Task Force and Darrel Regier, M.D., M.P.H.,
Vice-Chair, DSM-5 Task Force. I do appreciate receiving a reply from the DSM-Task Force even though it is a form reply. The reply itself indicates that the DSM-5 is aware of public concerns about possible exclusion of  persons with high functioning autism and Aspergers from a DSM-5 autism disorder diagnosis. (The form reply refers the reader to an article by work group member Professor Francesca Happé "Why fold Asperger syndrome into autism spectrum disorder in the DSM-5?").   Unfortunately the form reply makes no mention of the express exclusion of persons whose "primary trait" is intellectual disability.

For the DSM-5, as for the mainstream media, autism means high functioning autism and no longer includes CDC autism expert Dr. Marshalyn Yeargin-Allsopp's vast majority of intellectually disabled. The intellectually disabled, the only group expressly mentioned for exclusion from  the DSM-5 autism disorder diagnostic criteria, is not mentioned in the work group's form reply:

(1) The APA Neurodevelopmental Disorders DSM Work Group Form Reply

Dear concerned respondent to the DSM-5 Autism proposal: 

Thank you for contacting the American Psychiatric Association with your thoughts about the diagnosis of Autism Spectrum Disorder (ASD) proposed for DSM-5.  We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual's diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need. 

The new proposed criteria for ASD in the DSM are intended to improve the accuracy of diagnosing the disorders currently known as autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders. Most of the work group members are also clinicians who see patients with these disorders, and the proposal was developed with clinicians and their patients in mind. 

There are clinical and scientific reasons for improving the accuracy of diagnoses.  All patients should have an accurate diagnosis based on the most up-to-date clinical and scientific knowledge available. A more accurate diagnosis will help clinicians and other service providers target available treatments and rehabilitation methods for their patients.  In addition, it is important to note that patients whose symptoms no longer meet diagnostic criteria for the DSM-5 ASD diagnosis will very likely meet the criteria for one or more other diagnoses-for example, a communication disorder, for which interventions are available. From a scientific standpoint, more accurate diagnoses will also help guide research into the causes of the neurodevelopmental disorders and the development of new treatments. An informative article written by a work group member, Dr. Francesca Happé, on the changes to Asperger's disorder can be found on the Simons Foundation Autism Research Initiative website.

We are hopeful that continuing advances in research, diagnosis and treatment will help us devise better ways to treat autism and to reduce the devastating effect it has on individuals and families. We invite you to visit the DSM-5 Web site at www.dsm5.org where further information on ASD is available under the "Proposed Revisions" tab. This Web site will be revised and opened for public comment for a third a final time late this spring.  Once again, thank you for your input.

David Kupfer, M.D.
Chair, DSM-5 Task Force

Darrel Regier, M.D., M.P.H.
Vice-Chair, DSM-5 Task Force 

(2) My Submission to the Neurodevelopmental Disorders DSM Work Group
American Psychiatric Association

July 17 2011


Neurodevelopmental Disorders DSM Work Group
American Psychiatric Association


Dear NDD Work Group Members

I am the father of a 15 year old son diagnosed at age 2 with Autistic Disorder and assessed with profound developmental delays conditions which severely restrict his everyday functioning. He requires, and will require, 24/7 adult supervision. Since his diagnosis 13 years ago I have actively advocated here in New Brunswick, Canada for government funding of evidence based early intervention and autism specific training of education assistants and resource teachers who work with autistic students. With other parents we have enjoyed some success in these areas although we have had much less success in advocating for adequate adult care and treatment facilities for autistic adults. Throughout our efforts we were guided, and to the extent that we succeeded, we did so because of the leadership of American autism researchers such as Dr. O. Ivar Lovaas and others who established the evidence basis for the effectiveness of applied behavior analysis as an autism therapy. Throughout this time from 1998 the DSM definition of Autistic Disorder and the other Pervasive Developmental Disorders, the latter of which has become identified in popular usage and in research as the Autism Spectrum, was constant. Now the entire category for the "Autism Spectrum" is formally being merged together in the DSM-5 into one disorder divided only by the extent to which daily functioning levels are impaired by the newly defined ASD. I have two primary concerns about this new Autism Spectrum Disorder as it goes through substantive change at both the "high functioning" and "low functioning" end of the "autism spectrum".

1) The effect of the changed definition on research conducted under the DSM-IV definition of Autistic Disorder and the other PDD's.

Although it is a far from being a unanimously held position,it has been often mentioned in discussion of the startling increases in rates of autism diagnoses that the increases are accounted for entirely by the definition changes of autism in the DSM-IV, even though that occurred some 17 years ago, and increased social awareness. It seems entirely predictable that a newly changed definition will also confound our understanding of real autism prevalence.

2) The exclusion from Autism Spectrum Disorder diagnosis of those with Intellectual Disabilities.

As the father of a son who is severely affected by Autistic Disorder and who is "profoundly developmentally delayed" I am most concerned with the language of the DSM5's new A 09 Autism Spectrum Disorder which appears to exclude those, or many of those, with intellectual disabilities from an Autism Spectrum Disorder diagnosis. The proposed Autism Spectrum Disorder definition stipulates that criteria A,B,C and D must all be met in order for an ASD diagnosis to be given. Criterion A states:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays,...

The wording I have highlighted, "not accounted for by general developmental delays" when used in the context of persistent deficits in social communication and social interaction across contexts appears to exclude any one with an Intellectual Disability from also being diagnosed with Autism Spectrum Disorder, since Intellectual Disability will involve exactly those deficits.

This interpretation of the effect of Criterion A of the proposed Autism Spectrum Disorder is also supported by reference to Criterion B of the proposed A 00 Intellectual Developmental Disorder:

"B. The deficits in general mental abilities impair functioning in comparison to a person’s age and cultural group by limiting and restricting participation and performance in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings."

It seems clear that in any case of Intellectual Developmental Disorder the mandatory ASD Criterion A, persistent deficits in social communication and social interaction, will always be "accounted for by general developmental delays" and an Autism Spectrum Disorder diagnosis will be precluded.

I am aware that Ms Lisa Jo Rudy of About.com autism has communicated recently with Dr. Bryan King of the NDD work group on the issue of the possible exclusion of intellectually disabled from autism diagnoses. Dr. King provided the following response:

"There is no explicit desire to move anyone in to or out of specific diagnostic groups, 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."

The language of the proposed DSM is express and intentional. The absence of desire to remove anyone in or out of the groups does not mean that there is no intent to do so whether desired or not. It is the wording of the proposed revision that will determine future diagnoses. The exclusionary wording I have referenced is not explained in any meaningful way by Dr. King's comment. "More specific" to my humble interpretation is simply another way of saying not part of a general intellectual deficit. Which again indicates that the Intellectually Disabled will be excluded from the DSM's New Autism Spectrum Disorder.

I have commented on several occasions on my blog site Facing Autism in New Brunswick about the high numbers of persons with autism disorders who are also intellectually disabled. I have cited sources for the pre-1994 definition of autism including CDC autism expert Dr. Marshalyn Yeargin-Allsopp who stated that those with intellectual disabilities constituted "the vast majority" of those with autism prior to the 1994 changes which added Asperger's Disorder to the PDD's. The Canadian Psychological Association also referenced 80% of persons with non-Asperger's autism as having intellectual disabilities a figure which seems consistent with the CDC's two surveys showing 41-44% of persons with any autism spectrum disorder, including Aspergers, as having intellectual disabilities. The 1994 changes diluted the 80% figure to roughly 40% by simply adding a group who by definition did not have intellectual disability, those with Asperger's. Now the DSM5 is poised to push the intellectually disabled off the spectrum completely and will essentially redefine autism as what is currently Asperger's disorder.

The DSM5 attempt to completely separate Autism and Intellectual Disability ignores the historically close relationship between those with ID and those severely affected by autism disorder however labelled and ignores the possibility that the the ASD deficits are just components, differing in severity and expression, of intellectual disability. An Italian study has looked at the relationship between Intellectual Disability and called for more research of that relationship:

"Autism and intellectual disability: a study of prevalence on a sample of the Italian population.

La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF.

Psychiatry Unit, Department of Neurological and Psychiatric Sciences, University of Florence, Hospital of Careggi, Florence, Italy. gplamalfa@videosoft.it

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."

Conclusion:

With great respect to Dr. King and the DSM5 NDD work group I submit that the proposed Autism Spectrum Disorder wording of the DSM5 along with the Intellectual Developmental Disorder clearly operate to remove those with Intellectual Disability from the autism spectrum. I have no way of assessing the motivation for this change with any certainty. I do not really see the explanation offered by Dr. King as providing a coherent rationale for such a fundamental change. Some critics of the previous DSM-IV changes including Dr. Allen Frances have expressed regrets about the unintended consequences that flowed from that last revision. I can really see no good coming to persons with autism and intellectual disability who will no longer be considered autistic because mandatory criterion A can be accounted for by general developmental delay. 


With no intent to insult or engage in confrontation it looks more like the intent is to make life easier for doctors in making autism diagnoses without having to explore the more complicated aspects of a diagnosis when intellectual disability is present. It also makes it easier to calm the fears of those with Asperger's diagnoses who worried about being lumped together with those with autism in the new autism spectrum disorder. What is not at all clear is how this really helps in any way those with autism and intellectual disability.

I ask this working group to reconsider its decision to add language excluding intellectually disabled from the proposed Autism Spectrum Disorder in the DSM5.

Respectfully,

Harold L Doherty

Fredericton, New Brunswick, Canada

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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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Low Functioning Autism Reality and Autism Posers at New York Magazine

New York Magazine Says Aspergians and High Functioning Autistics, like 

Ari and Alex Shown Posing for their NY Magazine Coronations,   who Socialize

with Washington Pols and NY Media, Drive Land Rovers, Produce  Videos

with Autism Speaks; and Argue with Experts at IACC  Meetings 

Represent, and Speak for, People with Autism

Many parents and siblings of persons with low functioning autism might  disagree

****************************

I received the following email from Wanda James in the Upper Ottawa Valley and post  it with her consent. It is important for those who have children and siblings who are severely affected by autism disorder to speak out and be heard.

***************************

"Hello

I'm so glad to have found you if only because I've been searching the web endlessly and just about ready to pull my hair out reading about all these high-functioning socially inhibited "disabled" people. It was a relief to find someone who understands the true nature of autism and what it entails.

I'm desperately trying to find some info for my mother who is caring for my severely autistic 39 year-old sister. My parents are elderly now and have no idea what will happen to Jennifer when they go. No one in the immediate family can take her-- she is very hard to handle- very self-destructive and obsessive to the point of violence if the ritual is disrupted.  I've been searching for anything to give them hope that there is something out there but I can't find anything except a lot of people who are rejecting help because they don't want autism to be seen as a disadvantage. Makes me so mad. I joined a forum just to "let them have it" but I guess I ran out of steam.  I've got to choose my battles carefully these days. My parents are a bit isolated on a farm in the upper Ottawa Valley in Eastern Ontario so there's not much of a network there. I just wanted to be able to give them some hope that there are programs out there. Except there aren't any. Autism Ontario and the Autistic Society seem to be lobbying the government for lower priority things, like camps for kids, publications, workshops, theatre groups, raising awareness etc.-- and nothing for actual bricks and mortar housing or the staff to put in them. They closed down the only place we had here in Ontario for severely disabled people because they deemed it too "institutional" and not efficient. They then went on to open some prototype group homes which all failed because the people living in them weren't as independent as the government assumed they'd be. Why are governments usually made up of idealistic morons? Don't get me started! : )

I'd like to know how you are doing with getting the message through to governments, etc. I would be lobbying on the Hill if I could, but I'm disabled myself with pretty severe rheumatoid arthritis. I share the sense of fear my parents have and there don't seem to be any answers. Meanwhile, autism has become a trendy thing to have-- and suddenly everybody has it if they so much as stare into space for 5 seconds. I could not believe some of the forums. One woman said she was okay in social situations, but nervous in interviews! Well, duh. Who isn't? But the danger here is the "watering down" of the impact of autism on a person's (and) family's) life. It clogs up the system, driving the numbers up which governments take into account when they are doling out assistance. In the end, the people who really need the help, don't get it. It's much the same with arthritis. Everybody I meet has it-- in a thumb, wrist, whatever. They take a Tylenol and they're fine. But I will be having chemo next month to help eradicate mine. I've got 3 artificial joints and tendon repairs. I've been on some pretty life-threatening medications. But it's hard to be taken seriously, because "hey, my aunt has arthritis, and she can still work". That's why I wrote the book Getting Up is Hard to Do: Life with Rheumatoid Arthritis- to try to get the message out there. Now I've got to fight for my sister. I don't know how to deal with this.

Hope you don't mind me writing.

Take care

Wanda James

Ottawa

****************************

If you have read this blog on occasion you will know that I try to being attention to those who are typically ignored by the mainstream media that fawns over such "autistic" persons as Ari Ne'eman, John Elder Robison, Alex Plank and Amanda Baggs ... all people of considerable intellect and high functioning abilities,  people whose "autism" has little if anything in common with my  severely autistic son diagnosed with autistic disorder by three pediatricians with autism expertise and assessed by an autism specialized clinical psychologist and professor emeritus.  Those for whom autism is a "social" disorder, a different way of thinking or a "culture" do not face the autism reality faced by my son.

Occasionally I hear from parents or other persons with a loved one with  low functioning autism who face challenges similar to my son.  Like me they are all too aware of the periodic Big Media (CNN, CBC, NYT, Newsweek, New York Magazine etc)  anointment of "new" voices of "autism", of new "leaders" of autism.  Where did Ari Ne'eman come from before the New York Magazine elected him as the "autism self advocate" par excellence? How did IACC, Interagency Autism Co-ordinating Committee, member Ne'eman, diagnosed as a teen with Aspergers, a university student with the social skills to hob nob with US federal and state politicians and make innumerable media appearances, acquire the knowledge and understanding of severe autistic disorders to be able to speak on behalf of people like my son?

Various autism advocacy organizations, including Autism Speaks, have accepted these high functioning, barely autistic, persons as spokespersons for all on the autism spectrum and virtually ignore the realities of those most severely affected by autism. As with media and advocacy groups so too with governments which tend to ignore the most severely affected by autism, the low functioning autistic persons who live out their lives in restricted, archaic mental institutions instead of creating  positive, modernized, secure residential facilities staffed with autism trained personnel and access to badly needed professional. For many governments John Elder Robinson, former rock band musician, successful businessman, author and family man is the face of autism not Bryan Nevins who was left to  swelter to death, unable to remove himself from a hot van in Pennsylvania.  For many governments the face of autism is a high functioning, intelligent and articulate media star not the 50 year old autistic woman who could not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. 

Other parents, and members of families with severely autistic loved ones, know the difference. They know that their children are ignored by media, "autism" advocacy groups, governments, even by the American Psychiatric Association which reduced the percentage of persons with autism AND intellectual disability by expanding the definition of autism disorders in the DSM-IV to include high functioning persons with no intellectual disability.  Meanwhile, the APA is continuing its efforts to ignore and exclude those with low functioning autism disorders by further expanding, and diluting,  the definition of autism in the DSM-5.

 The New York magazine is unlikely to visit  any time soon some of the institutions  and facilities like those I have visited or the one in Long Island where a 50 year old autistic woman was abused or the one in Pennsylvania where a young severely autistic man died a horrific death in a searing hot van.  In all fairness though it could be difficult to get some of autistic residents in those facilities to pose  elegantly for some "glam" shots for the New York Magazine.


Those of us with children, siblings and loved ones  severely affected by Autism disorders must continue the fight to better their lives in the face of media, advocacy group and government indifference. 

We have no choice.  Our severely autistic loved ones have no alternative.

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What Autism Spectrum Disorder Severity Criteria Are Being Evaluated In The DSM-5 Clinical Field Trials?

Deborah Brauser, in an article on the Medscape Today website, advises that the APA has begun field trials for the DSM-5 diagnostic critieria including severity criteria which makes the APA's failure to disclose the proposed severity criteria curious, at least to this interested father of a 14 year old,  with an Autistic Disorder (DSM-IV) diagnosis and assessed with profound developmental delays:

October 19, 2010 — The American Psychiatric Association (APA) has announced that standardized field trials have now started in preparation for the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). .... Severity measures, through the use of questionnaires and other tools to help assess patient symptom severity on a rating scale, will also be examined during the field trials, as will "cross-cutting dimensional measures." These are tools for "assessing symptoms that occur across a wide range of diagnoses, such as anxiety or sleep problems." 

Severity criteria are being examined in the field trials which are already underway? If  so, if severity criteria for the New Autism Spectrum Disorder, Autistic Disorder in the DSM-5, are already established,  then why are they still not mentioned on the DSM-5 web site which tells interested persons to check back for updates on the subject?

Some disorders do have severity criteria posted on the DSM-5 web site:

Bipolar II Disorder
Personality Disorder Types
Attenuated Psychotic Symptoms Syndrome

Not all of the disorders, existing, newly proposed disorders or reclassified disorders have severity criteria published on the DSM-5 site. Presumably different work groups for the DSM-5 have reported in with their proposed criteria at different times but the fact that the severity criteria are being assessed in the field trials has to mean that each of the proposed disorders have in fact had the associated severity criteria established.  An article published in the American Journal of Psychiatry, Moving Toward DSM-5: The Field Trials,confirms that the clinical field trials will include evaluation of the related severity criteria for each disorder being studied, including autism:


"Formal field trials will involve the testing of between two and five specific diagnoses at any one site. The diagnoses tested at a site will depend on their relative frequency there. For example, major depressive disorder and complex somatic symptom disorder can be evaluated at a general medical clinic, but autism spectrum disorders require evaluation in a specialty psychiatric clinic specializing in these disorders.  ...... At each site, a research coordinator, trained and monitored centrally, will record each successive entry to the clinic over a specific time period to provide necessary sampling weights for that site's variance in reliability and validity. DSM-IV diagnoses obtained for clinical purposes at each site will be used to place each consenting patient into either a stratum likely to be rich in a target diagnosis at that clinic or a stratum consisting of a random sample of all other diagnoses. The goal is to recruit 50 patients per stratum per site, a total of 150 to 300 patients for each diagnosis under evaluation, to have adequate power for a site-specific determination of precision. Two DSM-5-trained clinicians who are new to the patient will be assigned to conduct independent clinical interviews of the same patient at least 4 hours, but not more than 2 weeks, apart. The attending clinician will be able to observe the interviews. The interviewing clinicians will know the target diagnoses at that site but will be blinded to the stratum to which each patient is assigned and to the attending clinician's diagnosis. The interviewing clinician at each session will be provided the patient's current crosscutting assessments, conduct a clinical interview with the patient, make one or more categorical diagnoses using DSM-5 criteria, and complete associated dimensional severity ratings.   [bold and underline emphases added]

The Autism Spectrum Disorder(s), including their severity criteria, are being evaluated at  clinical field trials now under way and yet the severity criteria are not posted despite entreaties by the DSM-5 to check back for updates under that category.  It would seem reasonable to speculate that their are reasons for this failure and that those reasons relate to the feedback received, much of it from persons who objected to Aspergers being grouped together with Autistic Disorder, with its high number of persons who are also Intellectually Disabled.

Any speculation about motives for the failure to disclose the autism spectrum disorder severity criteria is exactly that .... speculation. Unfortunately the APA has provided no  real information for the public to consider as clinical field trials are underway which could impact the lives of many persons with Autism Disorders, including the 75-80% who have  allegedly "co-morbid" intellectual disabilities.  The public, in the midst of such an important process, a process trumpeted wide and far for its transparency and public participation,  is simply left to speculate.

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Autism's Vast Majority Was Hurt By The DSM-IV. Next Comes the DSM-5 and the New Autism Spectrum Disorder

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. 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."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp

In the above noted quote the CDC's autism expert Dr. Yeargin-Allsopp did not try to get too precise with the numbers of persons on the "autism spectrum of disorders" who also have an intellectual disability. Two recent CDC surveys estimated that 44% and 41% of persons with ASD have an intellectual disability not 40% but it is difficult to be precise, even for the CDC autism expert,  with large survey figures.  The results of such surveys are expressed with terms like "about" or "approximately" so there is nothing added to our understanding of autism by KWibbling over whether the correct figure is 41% of 44%.  Nor is there any reason based on the CDC approximate figures to KWibble over the Canadian Psychological Association's 2006 estimate that 80% of those with autism, distinguished from Aspergers, also have an intellectual disability. The CPA figure is accepted as consistent, by this humble Dad, until the CPA, or an equally credible, authoritative source says otherwise. 

What we need to do is understand,  as revealed in the quote above from Dr. Yeargin-Allsopp,  that the clear association between autism and intellectual disability was downplayed by the American Psychiatric Association in the DSM-IV revisions.  We should understand the harm these revisions have caused to public understanding of the realities of autism disorders and the further harm that will be done when the "autism spectrum" is again expanded and watered down.  We should understand now and begin to explore the connections between  Intellectual Disability and "classic" autism,  currently called Autistic Disorder,  before the APA plunges ahead with its New Autism Spectrum Disorder in the DSM-V,  which it will do notwithstanding any public commentary or criticism.

This humble father of a 14 year old son with Autistic Disorder and Intellectual Disability is not going to KWibble over the CPA's math unless a credible authoritative source takes issue with the CPA figures and demonstrates that they are wrong.  I am not ashamed of my son's Intellectual Disability and I do not subscribe to the romanticization of  autism and other serious neurological disorders  under the offensive Neurodiversity ideology which describes these disorders variously as cultures,  natural differences or preferences. Nor am I a  "professor of psychology" at a community college or university with the qualifications to take issue with a national professional governing body like the Canadian Psychological Association.

Dr. Yeargin-Allsopp's comments are those of a CDC autism expert telling us in plain language that prior to the DSM-IV revisions which grouped autistic disorder with Aspergers and PDD-NOS the Vast Majority,  not a 50% plus 1 majority, but the Vast Majority of those with autism also had an intellectual disability. That strong and compelling piece of information about the reality of autism as a neurological disorder was obscured by simple definition changes  in the DSM-IV. 

There are some "autism experts" who publish several articles a year, and conduct studies of "autism" involving only high functioning autistic subjects and persons with Aspergers.  They do not make the effort to study the most seriously disabled of all persons with "autism spectrum" disorders ... Autistic Disorder's Vast Majority... those with Intellectual Disabilities.  They routinely publish studies involving HFA and Aspergers studies which invariably get reported in the mainstream media as demonstrating that persons with  autism have hidden, perhaps even superior, intelligence.  That type of feel good reporting obscures our understanding of the realities faced by those who are members of Autistic Disorder's Vast Majority ... those  with an Intellectual Disability,  With the further merger of the PDD's into one New Autisim Spectrum Disorder in the DSM-5, and the further watering down of what constitutes autism, the figure of 40% cited by the CDC's autism expert will, once again, be magically reduced and obscured ... hidden from public consciousness.

Does everyone really think it is just a coincidence that 80% of those with Autistic Disorder, or not to KWibble ....  the Vast Majority, are intellectually disabled?  Unfortunately the American Psychiatric Association is about to  get the DSM-V, and the New Autism Spectrum Disorder, in place to further obscure  and further reduce the impetus to research, explore and understand autism as an intellectual disability.   The vast majority of those with classic autism who are intellectually disabled will not be helped by the DSM-V changes. Their reality will be further obscured and hidden behind an increasingly glossy portrayal of autism in our public discussions.  

Time to order a new set, a DSM-5 version,  of rose colored glasses  with which to look at the New Autism Spectrum Disorder.

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New Autism Spectrum Disorder and Severity: DSM-5 Puts the Cart Before the Horse

From DSM-5 Development, Autistic Disorder, Severity, June 1, 2010 

The decision has already been made by the American Psychiatric Association's DSM revision team to rename and revise the current Pervasive Development Disorders in the DSM-IV  by combining them into one Autistic Disorder 299.0. 

The DSM-5.org site presents a rationale for the changes including the observation that "A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”." I am not that big on meatloaf so they have lost me with that image.

The New Autism Spectrum Disorder (NASD) rationale also states that currently :

•  ... distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.
• Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.)

As the father of a boy with Autistic Disorder with profound developmental delays, a boy who in ordinary language would be described as severely autistic and affected in every single aspect of his existence by a low functioning level I understand the severity aspect of the rationale for the New Autism Spectrum Disorder. I  tire of listening to the barely autistic engineers, lawyers, writers, university students,  successful business persons, Washington political circle navigators and IMFAR  socialites who are interviewed daily by the main stream  media and tell the world what it means to "be autistic".

Despite my previously expressed concerns (1, 2)  about the New Autism Spectrum Disorder I can see the logic in one"spectrum" disorder as long as the spectrum is clearly differentiated, as the DSM-5 site suggests, based on severity.   Unfortunately the DSM-5 people have committed to the New Autism Spectrum Disorder without having clear criteria for differentiating severity categories and criteria in the NASD, or at least without having communicated severity criteria to the public including "autism parents" like this Dad.

I don't know much about cleaving meatloaf at the joints but it seems to me that  with the New Autism Spectrum Disorder the DSM-5 team has put the  cart before the horse by committing to the creation of a single autism spectrum disorder,  the New Autism Spectrum Disorder, which recognizes distinctions based on severity,  without first clearly defining severity categories or criteria.

Until comprehensible severity categories and criteria are developed this father of a boy diagnosed with the current Autistic Disorder and assessed with profound developmental delays says NEIGH to the New Autism Spectrum Disorder.

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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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DSM-5: The American Psychiatric Association Gift to Autism Epidemic Deniers

DSM-5 Autism Spectrum Disorders

April 2009 Report of the APA Neurodevelopmental Disorders Work Group

(still under consideration)

Over the last decade and a half autism has been rising with the numbers of autism disorder diagnoses increasing from 1 in 500 to 1 in 110. There can be no doubt that a significant part of that expansion occurred with the expansion of the diagnostic criteria for autism in the DSM-IV and in particular with the grouping together of autistic disorder and Aspergers Disorder in one category, the Pervasive Developmental Disorder category.  There is no serious dispute that   part of the startling increase in autism disorders is due to the  1994 changes but as 1994 recedes further into the past, and as the number of autism increases continuing to rise significantly the 1994 changes grow less and less credible as a satisfactory explanation for the rising autism disorder diagnoses. With each upward revision in autism disorder estimates by the CDC it is becoming increasingly clearer that we are in the midst of real increases in autism disorders.  Those who deny that autism is actually increasing need help in clinging to their faith like insistence that autism is not rising, that there is no autism epidemic.

The autism epidemic deniers have had to expand, and vary, their diagnostic change arguments to include increased autism awareness and ascertainment, allegedly expanded autism services resulting in diagnostic substitution and so on. Even in the face of December 2009 statements by Dr. Tom Insel, Director of the IACC, that diagnostic change and ascertainment factors could only account for approximately 50% of autism disorder increases the deniers cling to their quasi-religious faith that autism is not, can not, be increasing but they are running out of credible arguments to make their case. Even the deniers insistence that autism disorders are 100% genetic, and therefore could not possibly be increasing, is starting to lose ground to a paradigm which suggests that autism results from the interaction of genetic and environmental factors. The autism epidemic deniers are growing desperate and their assertions that autism is not increasing are growing more tired and unconvincing with each upward estimate in numbers of persons affected by autism disorders. The autism epidemic deniers need help and help may be on the way in the form of a gift from the APA ..... the DSM-5.

The American Psychiatric Association announced in press release 09-65, December 09 2009, that the DSM 5 release date was postponed with publication now scheduled for May 2013.   The postponement is probably frustrating  but, once published, the DSM-5 should still be a gift to autism epidemic deniers. The  DSM-V Neurodevelopmental Disorders Work Group April 2009 Report  recommends that  the Pervasive Developmental Disorder (PDD) category be renamed to the Autism Spectrum Disorders which will officially combine the old PDD disorders into one spectrum of disorders.  The spectrum would be divided according to severity of symptoms with new descriptions of the diagnostic criteria for each category of severity..  

These changes appear to be quite substantial and may, or may not, prove to be of benefit in understanding what are already commonly called autism spectrum disorders.  But with the conversion of the PDD category to an officially recognized autism spectrum of disorders it is inevitable that those who simply do not want to believe that autism disorders are actually increasing will once again point to diagnostic definition change to explain, and deny, any future autism disorder increases. They will certainly argue, at the very least, that the 2013 increase in estimated autism cases renders it impossible to determine whether any post 2013 increase in autism estimates are real or resulting from the 2013 diagnostic changes.

Sixteen years later autism increases are still blamed on the 1994 DSM changes.  The 2013 changes should help  postpone acknowledging the reality of autism increases for at least  a further sixteen years.  The autism epidemic deniers, thanks to this expected  gift from the American Psychiatric Association, will have  a powerful new tool to continue their fight until at least 2029.

autism

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