Showing posts with label American Psychiatric Association. Show all posts

Not Accounted For By General Developmental Delays: In DSM-5 Era Life for Autism's Invisible Vast Majority Is About To Get Much Harder


DSM-5 Autism Spectrum Disorder Will Exclude 
Autism's Vast Majority  Of Intellectually Disabled

While the New York Times, the CBC and other mainstream media giants debate the DSM5's potential exclusion of high functioning autistic persons from autism diagnosis barely a whisper is heard about the express exclusion of autism's vast majority of intellectually disabled. The exclusion of the intellectually disabled from the DSM5's New Autism Spectrum Disorder is not a potential effect, it is the express and intended effect of the language of mandatory criterion "A" as recently confessed by Dr. Catherine Lord.

"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. Lord made it clear in her interview with the NYT that the APA's primary means of addressing the autism epidemic wasn't by removing high functioning autism from the DSM5 for that matter by conducting research into the environmental causes of autism. The APA will challenge the autism epidemic by redefining autism's vast majority of intellectually disabled out of the New Autism Spectrum Disorder:

"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]


Exclusion Criteria - Not Accounted For By General Developmental Delays


Dr. Lord's confession is confirmed by the words "not accounted for by general developmental delays.  The "not accounted for by" is recognized as an exclusion criteria formula used in the current DSM-IV.  It is not controversial or contentious  (particularly given Dr. Lord's confession) to read those words, as used in the DSM-5, as excluding autism diagnoses in cases involving intellectual disability or as it is also known in the DSM-5: A00,  Intellectual Developmental Disorder. 


The mainstream media, led by the NYT, is obsessed with the very high functioning persons at the barely autistic end of the current autism spectrum.  Autism researchers also focus on this point.  Very few display any interest in those most severely affected by autism.  Instead of addressing the many serious and harmful effects confronting those on the autism spectrum who are intellectually disabled the APA simply redefines autism ... and defines away the most serious problems currently associated with autism as illustrated in this article on wsiltv.com: 

"Working with young autistic children is key to helping them become more functional in society.

"They have difficulties interacting with people with their social communication," explains Kirsten Schaper, the Autism Center Clinic Director in Carbondale.

The Autism Center at Southern Illinois University works with about 16 autistic kids a semester, far less than the number of people that come seeking treatment.

"I'd say 90 percent of the referrals to the center do not have autism," says Schaper.

Schaper says mis-diagnosis of autism is rampant in the U.S., partly because the criteria to diagnose the disorder are vague and subjective.

"We do have a lot of referrals for kids for challenging behaviors, tantruming, head-banging, aggression, self-injury, but these are not characteristics of autism spectrum disorder," Schaper explains.

Now a group of autism experts are tightening the criteria for identifying the disorder by stating specific characteristics to look for. Some parents fear their child, who has mild symptoms that were diagnosed as autism, will no longer get treatment under the new rules. But Schaper says the new criteria should, actually, better help those kids.

"Kids who have maybe an intellectual disability, or a language disorder, or maybe a behavior disorder, rather than autism, these kids will not be identified as having autism, and hopefully get the correct diagnosis, and therefore the correct treatment for whatever disorder they're having." [Bold Emphasis Added - HLD]

Hopefully get the correct correct diagnosis, and therefore the correct treatment for whatever disorder they're having?  NONSENSE. The APA is changing the rules  so psychiatrists, psychologists and other health care professionals can ignore the most serious cases of autism and dump autism's vast majority in the invisible category ... now to be known as Intellectual Developmental Disorder. In the US where more and more states are requiring insurers to provide coverage for autism the financial hit they experience will now be minimal ... a permanent gift from the American Psychiatric Association.

Frankly, as a father of a 16 year old son with autistic disorder and profound developmental delays, my trust in the psychiatry profession is declining rapidly with each passing day.  Life will be easier for the members of this profession who will now address the autism challenge by ignoring the most difficult cases.  For autism's vast majority of intellectually disabled though, they will now be even more invisible, more forgotten, more ignored as they are dumped in the Intellectual Disabled Development bin.  Life for autism's vast majority is about to get much, much harder in the era of the DSM-5's New Autism Spectrum Disorder.

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Study Confirms DSM-5 Autism Spectrum Disorder Excludes Low Functioning, Intellectually Disabled Autistics


The abstract following is for the article  Testing the Construct Validity of Proposed Criteria for DSM-5 Autism Spectrum Disorder, authors William P.L. Mandy, D.Clin.Psy., Tony Charman, Ph.D., David H. Skuse, M.D.Accepted 21 October 2011. published online 05 December 2011. The study participants were 708 children and young persons who had mild to severe autistic difficulties. The authors, as I have highlighted in bold in the abstract, concluded that  the two-factor DSM-5 model for the New Autism Spectrum Disorder (three domains become two, APA, DSM-5, ASD Rationale) was superior to the three-factor DSM-IV-TR model. 

The authors' conclusion that the DSM-5 was a superior autism model was expressly based on the conclusion that "Among higher-functioning individuals, ASD is a dyad, not a triad, with distinct social communication and repetitive behavior dimensions."  No mention in the abstract conclusion is made of whether the same was true for lower-functioning autistic individuals who are not even mentioned in the conclusion.

It appears that, for the authors of this study, there is no need to consider whether the DSM-5 model is superior to the DSM-IV model for lower functioning autistic individuals, including the vast majority of the original classic autistics who suffered from intellectual disabilities.  It seems reasonable to assume that the authors' nonchalance is based on the wording of the DSM-5 which expressly excludes the intellectually disabled from a diagnosis under the DSM-5's New Autism Spectrum Disorder.  If the most low functioning autistics will no longer be included in the DSM-5 New Autism Spectrum Disorder why worry about current  DSM-III and DSM-IV low functioning autistics? 

In other words the authors know which way the wind is blowing in the DSM-5 2013, and beyond, world of autism. The DSM-5's New Autism Spectrum Disorder is for High Functioning Autism and Asperger's only.  Low functioning, intellectually disabled autistics will be found under the Intellectual Developmental Disorders category of the DSM'5's brave new autism world. (ASD - Mandatory Criterion A)

"Objective

To use confirmatory factor analysis to test the construct validity of the proposed DSM-5 symptom model of autism spectrum disorder (ASD), in comparison to alternative models, including that described in DSM-IV-TR.

Method

Participants were 708 verbal children and young persons (mean age, 9.5 years) with mild to severe autistic difficulties. Autistic symptoms were measured using the Developmental, Dimensional and Diagnostic interview (3Di). The fit of the two-factor DSM-5 model, which has a social communication and a restricted, repetitive behavior (RRB) factor, was compared with that of alternative models. In one half of the sample, properties of the DSM-5 model were examined to investigate the validity of specific diagnostic criteria, informing the development of a better fitting DSM-5 model. This was then cross-validated in the remaining “hold-out” half of the sample; and its stability was tested across groups defined by age, sex, and symptom severity.

Results

The DSM-5 model was superior to the three-factor DSM-IV-TR model. It was improved by the removal of items measuring “play and imagination” and “stereotyped and repetitive use of language.” A scale measuring sensory abnormalities was added to the model, and loaded onto its RRB factor. This DSM-5 model fit well in the hold-out sample; was stable across age and sex; and fit adequately in those with clinical and sub-threshold autistic presentations.

Conclusions

Among higher-functioning individuals, ASD is a dyad, not a triad, with distinct social communication and repetitive behavior dimensions. As suggested in the proposed DSM-5 criteria, sensory abnormalities are part of the RRB symptom cluster." [bold emphasis added - HLD]

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Autism Disorders On the Sidelines of the DSM5 Revolt


Several divisions of the American Psychological Association appear to be revolting against the American Psychiatric Association's DSM5.  A petition has been published on line.  In DSM5 in Distress Allen Frances, M.D., former chair of the DSM-IV Task Force and currently professor emeritus at Duke, summarizes the conflict between the warring APAs over the DSM5:

"Several divisions of the American Psychological Association have just written an open letter highly critical of DSM 5. They are inviting mental health professionals and mental health organizations to sign a petition addressed to the DSM5 Task Force of the American Psychiatric Association. You can read the letter and sign up at http://www.ipetitions.com/petition/dsm5/ It is an extremely detailed, thoughtful and well written statement that deserves your attention and support.

The letter summarizes the grave dangers of DSM 5 that for some time have seemed patently apparent to everyone except those who are actually working on it. The short list of the most compelling problems includes: reckless expansion of the diagnostic system (through the inclusion of untested new diagnoses and reduced thresholds for old ones); the lack of scientific rigor and independent review; and dimensional proposals that are too impossibly complex ever to be used by clinicians.

The American Psychiatric Association has no special mandate or ownership rights giving it any sovereignty over psychiatric diagnosis. APA took on the task of preparing DSM's sixty years ago because it then seemed so thankless that no other group was prepared or willing to do it. The DSM franchise has stayed with APA only because its products were credible enough to gain widespread acceptance. People used the manual only because it was useful.

DSM 5 has strained that credibility to the breaking point and (unless radically changed) will be much more harmful than useful. We have reached a turning point that will soon become a point of no return. A near final version of DSM 5 must be ready by next spring and all final wording will be set in stone within a year. Time is running out if DSM 5 is to be saved from itself."

Dr. Francis has been the most vocal and persistent critic of the DSM5.  His criticisms have a particular significance because of his former role as chair of the DSM-IV revision team. His observations about the DSM5 revolt picking up steam are noted by forensic psychologist Karen Franklin, Ph.D. in her blog commentary Psychologists' DSM5 Petition Catching like Wildfire, also published on Psychology Today:

An online petition by psychologists concerned about the lack of science underlying proposed changes in the American Psychiatric Association's Diagnostic and Statistical Manual (DSM) is taking off like wildfire, with more than 1,100 signatures as of this morning.

The blaze of interest is especially remarkable because the petition was launched without any publicity at all, and has gained traction solely through word of mouth.
The coalition of psychologists is publicly urging the American Psychiatric Association to reconsider the mental illness expansions and biomedical emphasis proposed for the fifth edition of the DSM, due out in 2013. The DSM-5 will reify disorders with little empirical support, lower the threshold for mental disorder, and foreground a purely biological approach to mental illness.

The coalition's online petitition comes on the heels of a similar public statement by the British Psychological Society, which I blogged about back in June.

The petition coalition expresses grave concern about the overemphasis on biomedical explanations for mental health problems, and the resulting overprescribing of dangerous psychiatric drugs"

The online petition expresses many concerns but makes no mention of the fundamental change to the autism disorders, grouping them together as one Autism Spectrum Disorder. Nor does it mention the exclusion of intellectually disabled persons from post DSM5 Autism Spectrum Disorder diagnoses.  The debates about autism causation are currently confused by many factors including the DSM-IV changes published in 1994.  Now, with fundamental changes in the definition of autism disorders, with the many becoming one, and with exclusion of intellectually disabled persons, epidemiological studies will once again be rendered limited if not worthless in helping us understand causes of autism.  The DSM5 rebels though make no mention of autism in their Petition.  

The DSM5 will have a huge impact on the Autism world,  if it is ultimately published AND accepted by psychologists. Autism is not a concern of the rebel forces though and Autism is left on the sidelines of the revolt.  The fate of many persons with autism disorders, and our understanding of autism disorders, will be significantly affected though by the outcome of the revolution.  

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