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.

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]

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.  

Is Autism Rising? Autism Knowledge Will Be Lost in the DSM-5

Conor, May 1, 2010, Age 14, 

Autism Diagnosis at age 2

Autism rates then: 1 in 500

Autism rates as of May 1, 2010: 1in 110

Old  (past 2 years) Facing Autism in New Brunswick profile 

Autism Rates 1 in 150 

Autism Rates Today: 1 in 110

Autism Rates Post DSM-5:  Who Knows? 

Knowledge is power said   Sir Francis Bacon.  Unfortunately the American Psychiatric Association with its treatment of autism disorders in  the DSM-5 seems to disagree with Sir Francis Bacon.  The decision to merge existing Pervasive Developmental Disorders in the DSM IV , and to increase the numbers of persons by adding a category for  persons with  "sub-clinical" characteristics of Aspergers will deprive us of much knowledge about the nature of autism disorders and aggravate existing challenges in understanding what causes autism disorders.

One of the major debates about autism disorders revolves around the question of whether autism disorders are truly on the increase, and are caused by environmental factors or triggers,  or whether the startling increases (from 1 in 500 when my son was diagnosed in  1998 to the current 1 in 110 recognized by the CDC) in autism diagnoses is totally explained by the 1994 DSM-IV revisions and social factors such as increased social awareness of autism, diagnostic substitution, alleged greater access to services for autism diagnosed children etc.

Most of these excuses for denying that autism is really rising are speculative but the DSM-IV diagnostic changes are real and there is no dispute that those changes play a significant part in explaining some of the increases.  The debate rages though over whether it explains all or substantially all of the increase in autism diagnoses.  After the DSM-5 kicks in the debate, and our knowledge of autism disorders and whether they are really rising , will be muddied further by the expanded definition of autism spectrum disorders. Epidemiological studies will be weakened (unless they somehow can be argued to show vaccines don't cause autism) by the difficulty arising from comparing autism rates pre and post DSM-5.  Autism knowledge, important autism knowledge about the role of environmental factors  in causing autism disorders will be lost or obscured.

This comment was prompted by some revisions I am doing to this blog site. I added the picture, above, taken yesterday of my now 14 year old son Conor to my sidebar . When he was diagnosed 12 years ago I read of autism rates of 1 in 500.  As I read the profile section in the sidebar I noted my profile note of a couple of years ago referring to rates of 1 in 150.  I am now changing it to read 1 in 110.  After the DSM-5 is in full effect, and assuming I am still being a nuisance on planet Earth, my profile section might well state 1 in 50.  And arguments will rage over whether the figure reflects a real rise in autism diagnoses or changes brought about by the expansion and dilution of the autism categories in the DSM-5.

Autism knowledge and, according to Sir Francis Bacon, power over autism disorders,  will be lost.  The knowledge and power  to find treatments and cures for autism disorders; to help those with autism disorders who want to be helped, who need to be helped, will certainly be diminished and possibly  lost entirely.

"But Officer I'm a Good Boy" - Severe Autism Reality Hits Home in Oklahoma as the APA Prepares to Substitute Aspergers for Autistic Disorder in the DSM-5

While many major news outlets, Holllywood and the American Psychiatric Association  (in the DSM-5)  are doing their best to convince the world that autism disorders are really just a different way of thinking, that autistic persons are all socially awkward but brilliant success stories waiting to be profiled,  reality hits home for those who are severely affected by autism disorders and the parents who care for them as it did last week in Oklahoma for Stephen B. Puckett, a 28 year old severely autistic man, and his family.

Credit is due to NewsOK (The Oklahoman online) and Age of Autism for reporting the story of Stephen B. Puckett whose autism disorder induced violent behavior at an Oklahoma hospital (OU  Medical Center)  resulted in him being arrested and  taken in handcuffs to an Oklahoma City Jail where his lawyer states that he spent three days in a straight jacket on suicide watch. NewsOK reports that Age of Autism readers responded to that site's coverage with messages of support for the family. A video of Mr. Puckett's mother talking about the situation and changes needed can be found at the NewsOK web site.

The hospital had refused to admit Mr. Puckett after he suffered seizures as a result of his autism. When Mr. Puckett kicked and scratched hospital police officers he was hauled away in handcuffs by police and spent three days in jail in a straightjacket on suicide watch.  As he was being taken away the Oklahoman reports that  Mr. Puckett was heard to say to one of the arresting officers "but officer I'm a good boy". 

Ultimately charges were not laid against Mr. Puckett.  Oklahoma County first assistant District Attorney Scott Rowland refused a police request to file charges recognizing that there were mental health issues involved and not wanting to have Mr. Puckett placed in the general prison population. Stephen Puckett's mother has called for legislative policy changes so that hospitals can not refuse to admit people suffering from autism induced seizures. 

What is also needed is recognition by  the American Psychiatric Association that intellectual disability and cognitive impairment, seizures and other issues are often part of autism disorders.  It is wrong headed and dangerous for the APA to remove any mention of intellectual disability from the description of autistic disorder in the DSM5.  The APA currently plans to separate Intellectual Disability from Autistic Disorder and replace it with  the high functioning form of autism now known as Aspergers.  This will not help society or hospitals in Oklahoma understand that as many as 75-80% of persons diagnosed with what is today known as Autistic Disorder are also intellectually disabled or cognitively impaired or that many suffer from seizures and meltdowns such as those that occurred in the OU Medical Center.   

Autism reality is being replaced in the DSM-5 by psychiatric profession convenience (clinical utility) to the detriment of those most severely affected by autism disorders whether they live in Oklahoma in the US or Fredericton, New Brunswick here in Canada. The APA whitewashing of autism realities is well underway and will continue with the APA substitution of  Aspergers for Autistic Disorder in the DSM-5.

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.

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

Autism and the DSM-V in Public Life and Discussion

The DSM-IV-TR, the current version of the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is currently undergoing revision and will ultimately be replaced by the DSM-V. The Report of the DSM-V Neurodevelopmental Disorders Work Group, Susan Swedo M.D., November 2008 lists various issues being examined by that group, many of which could have a dramatic impact on public understanding of what constitutes autism. I strongly encourage everyone with an interest in autism disorders to read this summary report.

Autism as a distinct disorder category began with the 1980 DSM-III, described initially as infantile autism and revised to autistic disorder in 1987. The DSM-IV revision added the "pervasive developmental disorders" which are commonly described today as the Autism Spectrum of Disorders. Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were added to autistic disorder in this category.

The addition of these additional categories dramatically increased the numbers of children being diagnosed with "autism". A major controversy has ensued over whether the astonishing increase in autism diagnoses is due entirely to this expansion combined with greater social awareness as some believe. Others hold to the view that environmental causes or triggers, particularly vaccines, have contributed, in whole or in part, to the dramatic upswing in autism diagnoses.

Personally I think it is obvious that a substantial portion of the increase is attributable to the expansion of the diagnostic categories of autism in the DSM. But I do not think sufficient research has been done to conclude that the increases are due entirely to the definition changes. Even on the vaccine theory I have never accepted that either side of that debate has been made conclusively.

Another controversy generated by the expansion of the definitions of autism has arisen from the grouping together of persons with normal and even exceptional communication and functioning abilities with persons like my son who has limited communication and functioning ability. From this grouping has arisen a group of high functioning, anti-cure, anti-treatment, autistic persons with excellent communication skills and with an aggressive social/political agenda. Some have appeared before courts, political bodies, in the mainstream media and on the internet to wage political warfare against parents seeking to help their own, generally more severely disabled, autistic children.

The Report states that there are several questions still under discussion for Autism Spectrum Disorders:

1) How to describe the “spectrum” of disorders now known as ASD (e.g., how many domains will define the disorder);

2) What is the specificity of repetitive behaviors in ASD and how might they be better defined;

3) Whether Childhood Disintegrative Disorder (CDD) is a unique and separate disorder, and if so, what are its defining characteristics;

4) Whether autism is a life-long diagnosis or whether it is possible to recover/remit to the point where the diagnosis is no longer applicable;

5) Whether Asperger’s disorder is the same as “high-functioning autism”;

6) How the DSM-V can alert clinicians to common medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers;

7) How to include consideration of severity and impairment in diagnosis (currently defined as “qualitative impairments”) and how to integrate these with the overall structure of DSM-V; and

8) How/where to discuss cultural influences on diagnosis (e.g., Korean use of reactive attachment disorder rather than ASD to avoid family stigmatization).

These are all important issues and, like most autism discussions, will undoubtedly generate considerable controversy when the DSM-V is finally released.

autism