Ritvo Swedo DSM5 Autism Shootout At The IMFAR Corral

Edward Ritvo-Susan Swedo Shootout at 

the IMFAR Corral, Sheraton, Toronto

Photo by Harold L Doherty, May 18, 2012

Dr. Susan Swedo of the DSM5 autism committee presented a defense of the proposed DSM5 Autism Spectrum Disorder twice yesterday at IMFAR in Toronto.  After the second presentation I jumped up to the mike and asked about the exclusion of Intellectually Disabled under the exclusion wording "not otherwise accounted for by general developmental delays" in the wording for Mandatory Criterion A social communication categories. I was advised that some but not all ID would be excluded.  A couple more questioners approached the mikes on both sides of the room including Dr. Edward Ritvo author of Understanding the Nature of Autism and Asperger's Disorder: Forty Years of Clinical Practice and Pioneering Research.  Dr. Ritvo asked pointed questions about the risk-benefit analysis of introducing the new DSM5 ASD and did not appear happy with the answers he was getting from Dr. Swedo who switched the questioning to the other microphone where Dr. Marshalyn Yeargin-Allsopp was waiting to make a point.  As a layperson, a parent autism advocate with concerns about the DSM5, I am happy that Dr. Ritvo added his prestige and expertise to the debate about the wisdom of the DSM5 autism do-over.  I hope we hear more from Dr. Ritvo on this subject.

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

Autism Advocate Ari Ne'eman Speaking At the National Press Club

My  son's severe Autistic Disorder is not the same 

autism disorder as Mr. Ne'eman's.

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

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

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

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

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

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

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

FOX News Autism Experts Worry About DSM5 Impact on High Functioning Autistic Children, No Concern for Low Functioning Autistic Children

FOX News has published a report, Some Experts Worried Over Revised Autism Guidelines, in which two autism experts, Dr. Keith Ablow, a psychiatrist and Fox News contributor, and Dr. Thomas Frazier, who treats children with autism at the Cleveland Clinic Children’s Hospital, express their concerns about the possible impact of the DSM-5`s new Autism Spectrum Disorder category on high functioning autistic children. They are concerned that some high functioning autistic children might lose their diagnoses, and access to autism specific education services, although the FOX report does not provide much detail on the basis for their concerns:

“These new guidelines would place an emphasis on preservative and repetitive behaviors – but many children who were originally diagnosed with autism may be reclassified. Ablow said this can leave some people who are still suffering with some of the symptoms or less severe symptoms out in the cold. “If we don’t loosen it a little bit, I suspect that some of these high-functioning kids may actually either get shifted into a different diagnosis,” said Dr. Thomas Frazier.” 

There is no mention however of the possible negative impact on low functioning autistic children, those with intellectual disabilities who might be excluded by the DSM5 Autism Spectrum Disorder mandatory criterion A which excludes an autism diagnosis where a person is also intellectually disabled:

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:.....`

Like so many autism experts and professionals the FOX experts are concerned about high functioning autistic persons but not about low functioning autistic persons who remain the invisible autistics abandoned by health care professionals and the mainstream media alike.

Will Criteria D Actually Be Required in Diagnosing the New Autism Spectrum Disorder Level 1?

In order for the New Autism Spectrum Disorder to be diagnosed pursuant to the DSM-5, Criteria A, B, C, and D must all be met.  That is what the DSM-5 says according to the dsm5.org web site.  But will Criteria D, Symptoms together limit and impair everyday functioning actually be present in practice?  Or will psychiatrists and psychologists diagnose Level 1 Autism Spectrum Disorder without any real limit or impairment in everyday functioning?

I had previously asked if any of the well known, apparently very high functioning persons with autism or Asperger's Disorder would lose their diagnoses under the new criteria.  The other side of the coin, of course, is the possibility that Criteria D will not be required in practice.  

I have met persons with Aspergers who clearly have limitations in everyday functioning and I am not suggesting that anyone with Aspergers could not really meet a limited and impaired everyday functioning test.  There are, however, some very successful persons with a high functioning autism or Aspergers disorder who do not have any obvious limit or impairment including some who can function in high level government, legal and media settings. Presumably everyday functioning is an everyday, common sense, criterion. But how some of these people were diagnosed with an ASD even under the current DSM-IV criteria is beyond my understanding as a layperson. Given the careers that some have built as spokespersons for the autism community, will public pressure  be exerted for professionals to go easy on Criteria D in diagnosing the New Autism Spectrum Disorder?

Will Critieria D actually be required in practice in diagnosing the New Autism Spectrum Disorder under the DSM-5?  I guess the answer will be found in future prevalence studies and debates. 

What Autism Spectrum? Research in Autism Spectrum Disorders Has Often Excluded Children with Severe to Profound Intellectual Disabilities

 The recent "autism" brain scan study from the UK is a notorious example of an alarming reality in the world of autism research - the severely autistic are excluded from autism research. In that study autistic persons with intellectual disabilities were intentionally excluded and 16 of the 20 participants in the study actually had Aspergers diagnoses. The study press releases should have more accurately hyped the potential of the brain scan process involved to assist in diagnosing Aspergers. Of course that distinction will be moot once the DSM5 reduces the Pervasive Developmental Disorders to one Autism Disorder, expands the number of very high functioning persons who will be considered "on the spectrum" and removes those with Autistic Disorder and Intellectual Disabilities from the "spectrum".

The efforts of the DSM5 committees to remove intellectual disability from Autistic Disorder are assisted by studies like the brain scan study which already exclude the vast majority of persons with Autistic Disorder who also have intellectual disabilities.   That study is far from unique as indicated in the comments of well known autism researcher and DSM5 panel  member Catherine Lord Ph.D. in Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

"Variability, at least in terms of IQ and ASD symptoms, has not been as significant a factor when comparing across research-recruited samples. Numerous studies have combined samples from different research labs where distributions were very similar. 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]


Aspergers Disorder will become the New Autism Spectrum Disorder in the DSM5 which will emphasize social and communication deficits but will do away with the implicit references to intellectual disability in the current DSM. The vast majority of those with Autistic Disorder today, the 75-80 % of those with Autistic Disorder who also have intellectual disabilities will, as in the research studies which have led to the New Autism Spectrum Disorder in the DSM5, simply be excluded.

Brian S. v. Delgadillo: California Appeal Court Discusses Autism, Aspergers and the DSM5

In BRIAN S. v. DELGADILLO, the Court of Appeals of California, Sixth District, in a decision filed July 28, 2010, and  reported on line at LEAGLE, dismissed an appeal by a claimant with an Aspergers Disorder diagnosis  who had been denied services by a regional center. The appeal involved a number of  evidential and procedural issues and the weighing of contrary professional psychiatric opinions.  Amongst other findings by the court was the conclusion that "autism" as used, but not defined,  in the applicable statute did not include Aspergers Disorder. The court also concluded that "autism" as used clinically refers to the diagnosis of "Autistic Disorder" in the DSM-IV-TR  but not to Aspergers Disorder.

" Finally, our interpretation of the statutory language in section 4512, subdivision (a), is consistent with that of the trial court, the ALJ, the Regional Center, and the Department of Developmental Services (DDS). We understand the concerns expressed by Claimant and the amici curiae. However, our review is defined by the record of the proceedings before the ALJ and the superior court. This record does not support a conclusion that the term autism in section 4512, subdivision (a), must encompass a spectrum of developmental disorders that includes Asperger's Disorder, nor does the pertinent legislative history of the statute compel such an interpretation. Questions concerning whether the language of the statute should be amended or expanded to reflect changing diagnostic practices, or to include a broader array of developmental disorders, should be addressed to the Legislature. (Richardson v. City of San Diego (1961) 193 Cal.App.2d 648, 650-651; Strickland v. Foster (1985) 165 Cal.App.3d 114, 119.)" ( Bold empahsis added - HLD)

The court noted that the statute did not define the term "autism" and referred to the DSM as the authoritative clinical guide in order to determine whether the "autism" in the DSM included Aspergers Disorder. After reviewing the record and the testimony of the professionals in the record the Court concluded that autism in the DSM currently refers to Autistic Disorder and does not include Aspergers Disorder:

"Claimant argues that these publications reflect recent trends showing that the DDS, through its regional center system, provides services to individuals with Autistic Spectrum Disorder, including those with Asperger's Disorder, on a case-by-case basis, provided that the individual is substantially disabled by the condition, as that term is defined in section 4512, subdivision (l). The amici curiae also rely on these studies and guidelines in pressing their claim that the current use of the term autism in the mental health community describes a range of disorders known as Autistic Spectrum Disorder, which includes both Autistic Disorder and Asperger's Disorder.

It appears from these materials that increasing numbers of people seeking services in the regional center system are presenting with various forms of Autistic Spectrum Disorder, as described in the Best Practice Guidelines, and that there is an emerging need to clarify the eligibility requirements under the statute. However, while claimant and the amici curiae have impressed upon us the importance of these issues, we must reject their arguments, for several reasons.

First, contrary to what the amici curiae argue, the materials before us by no means reflect a settled consensus in the scientific community regarding the use of the term Autistic Spectrum Disorder. We note that the authors of the Best Practice Guidelines point out that Autistic Spectrum Disorder, as used in the Guidelines, is a descriptive term, and is not meant to be a diagnosis. The authors defer to the authority of the DSM-IV-TR as the current standard, which classifies Autistic Disorder and Asperger's Disorder as two separate disorders. The amici contend that the newest edition of the DSM will reject any distinction between the two disorders and has formally recognized autism as a spectrum disorder. However, this new edition of the DSM (DSM-V) is in the preliminary draft stages only and will not be published in final form until 2013. 

Furthermore, even among those professionals who advocate using the descriptive term Autistic Spectrum Disorder, there is disagreement as to which pervasive developmental disorders should be included in the term. (See Caseload Update, p. 6, ["[b]oth nationally and within California, there is not total agreement on which diagnoses should be included as part of the spectrum."].) And there is controversy around the spectrum concept itself. (See Best Practice Guidelines, p. 147 ["the assumption that all of the conditions on the so-called `spectrum' represent some variant of autism remains a hypothesis and is not an established fact."].) In sum, resolution of what appears to be an unsettled debate in the psychiatric community as to whether autism should be re-classified as a broader Autistic Spectrum Disorder involves clinical, rather than legal, determinations.

Second, Claimant's argument that the DDS has endorsed a definition of autism to mean Autistic Spectrum Disorder, thus including Asperger's Disorder, is directly contradicted by the DDS itself, which has filed a brief in this appeal in response to our granting of Claimant's request for judicial notice. The DDS has clarified that it has "not issued any formal interpretations of `autism' under section 4512, subdivision (a)." The Best Practice Guidelines itself cautions that it offers only recommendations, and "cannot be interpreted as policy or regulation." The DDS, and the authors of the Best Practice Guidelines, continue to accept the definitions in the DSM-IV-TR as current authority. The Caseload Update, prepared by the DDS, equates autism with Autistic Disorder and does not include in its data "people with other disorders on the spectrum," such as Asperger's Disorder. It provides that "[f]or the purpose of this report, the term `autism' refers only to the condition characterized by the [DDS] as `autistic disorder' [as defined in the DSM-IV-TR]." The position of the DDS is clearly stated in its brief: "`[A]utism' under the Lanterman Act should be interpreted to mean `Autistic Disorder' as defined under the DSM-IV-TR, and accordingly should not include Asperger's."[ 6 ]"

The court while acknowledging the disabling challenges faced by many with Aspergers Disorder also offered the opinion that  the deficits afflicting those with Autistic Disorder are more severe:

"It is argued that individuals who have been diagnosed with Autistic Disorder and those with Asperger's Disorder may be equally disabled and similarly in need of services. Thus, there is no reasonable basis to find some individuals eligible for services and to exclude others, except on a case-by-case assessment of their level of disability. We understand, and are sympathetic with, the argument that services should be available to all individuals with substantial disabilities. However, the Legislature has specifically limited the categories eligible for services under the Lanterman Act. And Autistic Disorder and Asperger's Disorder, although they have characteristics in common, are presently distinguished by the diagnostic criteria set forth in the DSM-IV-TR. With Austistic Disorder there are more severe communication deficits not found in people with Asperger's Disorder. With Autistic Disorder diagnostic symptoms are obvious in early years, and may include mental retardation. Those with Asperger's Disorder exhibit no cognitive or language delays. These differences describe a greater severity of deficits in people with Autistic Disorder and provide a reasonable basis for the regional center system serving that population. And, as the record shows, people with Asperger's Disorder are served through the mental health system."

As noted above, the court noted some important distinctions between Autistic Disorder and Aspergers Disorder including diagnostic differences related to severe communication deficits in persons with Aspergers Disorder which are not present in Aspergers, the fact that Autistic Disorder symptoms are obvious in early years, the fact that mental retardation may be present in Autistic Disorder  and the fact that those with Aspergers Disorder do not show cognitive or language delays.

The California appeal court in this case expressly stated that persons with Aspergers can also suffer from deficits but they are different in kind and severity from those which accompany Autistic Disorder. I have made this observation many times on this site.  Given that the DSM is the primary clinical tool in North America for assisting in the diagnosis of what are described as mental disorders which impact on the functioning abilities of those with various DSM diagnoses why on earth are the DSM5 committees combining the two together into one New Autism Spectrum Disorder? How does this obscuring of important differences in functioning  areas and severity levels in the authoritative diagnostic manual  help persons with either disorder?

It's OK, It's Politically Correct to Stigmatize Persons on Intellectual Disabled, Low Functioning End of the Autism Spectrum

"The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.

...

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

...

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

NYT Times Op-Ed, Disorder out of Chaos,  February 9, 2010, Roy Richard Grinker, Anthropologist,  father of a daughter with Asperger's

The stigma of autism is fading fast for those with Aspergers disorder who, by definiton, do not have intellectual disabilities, and who can be quite successful in many fields of endeavor.  The original stigma against those with autism who are intellectually disabled continues and is in fact promoted by people like Professor Grinker who essentially argue that persons with Aspergers should not feel stigmatized by inclusion in the autistic disorder category in the DSM 5 because we know that people with autism are really quite intelligent.  The stigma feared by those with Aspergers who express concern, and spokespersons like Grinker,  is clearly the stigma of being associated with the intellectually disabled.   

The NYT and Professor Grinker do not urge anyone to refrain from such fears  on the basis  that there is nothing wrong with being placed in a disorder category with persons with intellectual disabilities.   Instead,  in 2010 they try to imply that persons with autism disorders don't really have intellectual disabilities at all.  This is a falsehood, perpetuated by successive revisions of the DSM including the DSM 5.  In 2010 it is OK, it is in fact politically correct to stigmatize the intellectually disabled members of the autism spectrum in order to make some persons with Aspergers feel comfortable about formal inclusion in the autistic disorder category.

Professor Roy Richard Grinker, and the New York Times which gave him their podium, assert that autism disorders are disorders only in the sense that persons carrying an autism disorder diagnosis are socially awkward.  They make light of the very harsh realities faced by persons with severe, low functioning autistic disorder diagnoses.  While Professor Grinker,  with a high functioning, intelligent, if socially awkward daughter, feels comfortable in assuring us that "people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s"this father of an intellectually disabled, low functioning 14 year old boy with severe Autistic Disorder does not buy what the Professor is selling.  Professor Grinker's opinion, rosy at it is, informed as it is by his high functioning daughter's Asperger's Disorder, is not substantiated by professional literature or anecdotal evidence concerning Autistic Disorder.

I  know first hand the realities of living with, raising and caring for a severely autistic child, now well into adolescence.  As an advocate I have represented parents of severely autistic children trying to cope with the realities of severely autistic children while the good professors and others who promote autism as a strength prattle on with their powerful media megaphones like the NYT in hand.  As an advocate here in New Brunswick, Canada I have visited with severely autistic persons living in psychiatric hospital facilities.  The good Professor's rose colored,  Autism as Asperger's, glasses obscure his understanding of the harsher realities faced by the severely autistic to the detriment of those most severely affected by autism who need society to understand those realities before their lives can be changed for the better.

The Professor apparently doesn't follow news of autism as closely as he follows news of Aspergers.  If he did he would know of people like  Keith Kennedy lost in mid-west woods for a week, James Delorey who wandered off to his ultimate demise in a Nova Scotia snow storm, the child who died in a neighborhood pool recently,  the young man arrested by police at a  hospital that refused him admittance because of his autistic behavior  who informed the arresting officer that he was a good boy,  and those who are lost in local traffic . Or he might know of those severely autistic children like my son Conor who was fortunate to survive a busy neighborhood street because a truly good Samaritan stopped his vehicle before traffic stopped my son's life and took him to a local convenience store where I was able to locate him, whole and healthy with chips and candies in hand,  after calling 911.  

If the good Professor knew the realities of severe autism disorders he would know of the middle aged woman living in a New York residential facility who was  repeatedly, severely and physically abused by staff until caught on camera and saved by a conscientious staffer.  The  abuse had gone of for some time but the woman, severely autistic, was unable to communicate her situation to the facility and may not have known she could do so.  

The myth that even non-verbal autistic persons have Aspergers like intelligence is promoted in stark defiance of the professional studies done to date.  The Canadian Psychological Association, which embodies in its membership at least as much knowledge of the autism spectrum as that which can be attributed to Anthropology Professor Grinker,  stated in its 2006 Canadian Senate submission that ""Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average"  The  CPA figures, which expressly included only autism and excluded  Aspergers from the 80% figure,  mirror very closely two successive surveys conducted by the CDC in the US.  CDC  Autism and Developmental Disabilities Monitoring (ADDM) Network gathered data in  2004 and 2006  that indicated between 41 and 44% of persons on the autism spectrum (including persons with Aspergers who, by definition are not intellectually disabled or cognitively impaired) also suffered from intellectual disability.

Professor Grinker, proud father of a daughter with Aspergers,   does not mind reassuring people with Aspergers that their inclusion in the DSM 5's autistic disorder category will not result in their stigmatization by association with intellectually disabled persons with autistic disorder.  This proud father of an intellectually disabled son with autistic disorder does mind.  I mind very much and I strenuously object to this  stigmatization of intellectually disabled autistic persons like my son.  For me, such stigmatization is not politically correct.  It is offensive and  unacceptable.  

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.

Autistic Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies .... or in the DSM 5

The CDFoakely videos present the realities of severe autism that you don't see on television or movies.

Persons who are severely autistic do not attend colleges for gifted youths, intervene as "autistics" before the Supreme Court of Canada to oppose families seeking government funded ABA interventions for their own children, pose for interviews with CBC, CNN or the New Yorker Magazine or hob nob with Washington politicians and bureaucrats.

Their existence, if they survive snow storms in Nova Scotia, being lost in the woods of Northwestern Wisconsin for a week, being physically abused by  some staff members in a Long Island residential home, living on a hospital ward in New Brunswick Canada, or jumping from an ambulance in South Carolina , is not always pretty and does not usually attract beautiful Hollywood actresses to portray "autism" for the world.

It is the families of the severely autistic who know their realities and speak for them, not the very  igh functioning IT professionals, researchers and  politically vocal university students who declare that autism is a different way of thinking and should not be cured.  It is the families who, day in and day out, care for, and love, their severely autistic family members who know and understand  the realities of severe autism. 

Severe autism may ultimately be whitewashed entirely from the public consciousness by Hollywood movies and the DSM 5.  If severe autism is not obliterated entirely from  public awareness it will be because even the mainstream media, at least at the local level, does report the tragic consequences that sometimes strike the severely autistic.   And because courageous family members will tell the world, and keep telling the world,  the truth about severe autism.

CDFoakley videos continue that effort to courageously portray some severe autism realities. You can find them on Youtube. And they are featured on the sidebar here at Facing Autism in New Brunswick. From CDFoakley "Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies":

Removing Severely Autistic from the Autism Spectrum

The DSM 5 promotes the stigmatization of low functioning persons with autism disorders by excluding any reference to cognitive  or intellectual disabilities in its description of  the new categories of autism spectrum disorders.  The mainstream media has long ensured that such stigmatization prospers in the popular culture by focusing on stories of great feats by some persons with Aspergers and Autism while steadfastly ignoring the plight of the severely autistic persons living in institutional care.  In a similar vein every protest by even a handful of persons with  Aspergers and High Functioning Autism,  of "negative" depictions of autism, depictions of the realities of life faced by the severely autistic, is promoted as enlightened self advocacy by a largely autism ignorant mainstream media.

The mainstream media continues its obsession with high functioning autism and Aspergers  in discussing the autism changes in the DSM 5 with article after article about how the changes will affect those with Aspergers.  Some of that attention to the potential impact  on persons with Aspergers is certainly warranted but not to the point of refusing to  consider the impact of the DSM 5 changes on those at the severely affected, low functioning,  end of the autism spectrum, those with Autistic Disorder and Intellectual Disabilities.  

The fact that between 75 and 80% of persons with  autistic disorder, as it is currently called, the category comprised of the original pre-1994 DSM change  "autistics", also have intellectual disabilities is hidden completely  from sight in the DSM 5.   One of the signposts of stigmatization is when it is not considered polite to mention some persons or topics in polite company and the DSM 5 has ensured that the stigmatization of persons with autistic disorder and intellectual disability will continue.  

The DSM 5 pretends that ASD and ID  are unrelated, that delay or inability in understanding language is not itself  indicative of a cognitive or intellectual deficit, and  by pretending that the 75-80% of persons with cognitive disorders AND assessed  intellectual disabilities is just an amazing coincidence, one not needing discussion; one not needing  mention in the diagnostic  manuals used by psychiatrists, psychologists and general practitioners.  It is only a matter of time until persons with Autism Disorders and Intellectual Disabilities are officially excluded from the Autism Spectrum of Disorders category of the DSM.

The mainstream media has responded to the proposed changes by obsessing over the impact on those with Aspergers and, with few exceptions, ignoring the impact of the changes on the lower functioning persons with autism, those with intellectual and cognitive deficits.  The headline of one an AP article (which is one of the more balanced articles on the autism changes) highlights the media focus in reporting DSM 5 autism changes:

Proposed autism diagnosis changes anger "Aspies"

This humble blogger, and father of a 14 year old son with Autistic Disorder and profound developmental delays,  was interviewed and quoted by Lindsey Tanner  in the above noted AP article.  I appreciate her effort to provide some balance to the discussion but even that article, as the headline indicates, is focused primarily on the impact on "Aspies" of the DSM 5 autism changes.  Few other media articles showed that much balance. Not a single article focused on what  impact the changes would have on those most severely affected by autism disorders.  

Both the DSM 5 and the mainstream media have adopted a perverse triage system when it comes to discussing autism disorders. The highest priority is given to examining the impact of  official diagnostic labels and criteria on those least impaired by autism disorders first and foremost and examine the impact on those most affected later ... if ever.

The DSM has, in the DSM IV and DSM 5, been changed to expand the definition of autism to include those with Aspergers, those at the high functioning end of the autism spectrum of disorders.  Some at the high functioning end do not consider their condition to be a medical disorder even though they embrace medical terms like Autism and Aspergers. Meanwhile the original autistic persons of the DSM III are increasingly stigmatized, rendered invisible by failure to mention the most salient and disabling features of their disorders ... their intellectual disabilities and cognitive impairments.  The stigmatization of intellectual disabled, low functioning autistic persons is clearly illustrated in the Lindsay Tanner/AP article;

Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger's, fears Asperger's kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.   Grouping Aspies with people "who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?" Willey said.

The expansion of autism in the DSM IV and DSM 5 to include more and more persons barely impacted by autism will result in more identifcation of autism with giftedness in the public mind and the severely affected will be even more completely removed from public discussions of autism. It is only a matter of time until those with autism and intellectual disability are officially removed from the autism spectrum completely.  It will probably happen officially  in the DSM 6 but it is already well under way. 

autism