CBC News Misrepresents Autism By Omitting Any Reference to Intellectual Disability

In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:

• Shows no interest in other people
• May be interested in people, but does not know how to talk, interact with or relate to them
• Has difficulty initiating and maintaining a conversation.
• Is slow developing speech and language skills, which may begin to develop and then be lost, or may never develop fully.
• Has difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
• Repeats ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting oneself.
• Has restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea or activity.

As well, people with ASD may have secondary problems such as:

• Neurological disorders including epilepsy.
• Gastro-intestinal problems.
• Fine and gross motor deficits.
• Anxiety and depression.

Children with ASD develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking."

The only reference to intellectual or cognitive disabilities in the CBC News article is in the last paragraph above which implies that cognitive skills may develop at different rates in conjunction with other skills and immediately mentions possible strengths such as solving math problems.  This is not by any means a clear and accurate representation of the intellectual disability that is present in large numbers of persons with autism. 

The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:

• Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006.

The CDC estimates are consistent with other estimates of the "co-morbidity" of autism and intellectual disability that I have posted links to on this site.

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

Conor's Autism Diagnosis 15 Years Ago Today

Conor, 2nd Birthday, the day before he is diagnosed with 

PDD-NOS (subsequently changed to Autistic Disorder)

Yesterday was Conor's 17th birthday.  Today is exactly 15 years since he was diagnosed with an autism disorder, PDD-NOS, the day after his second birthday shown in the pictures above.  Shortly afterward he was re-diagnosed with Autistic Disorder, and he was also subsequently assessed with profound developmental delays.  I can't say that I am overly impressed with the research into autism causes, treatments or even our understanding of what constitutes autism that has taken place in the last 15 years.   15 years ago intensive early behavioral intervention was the only seriously evidence based intervention for autism as it remains today. 15 years  after Conor's initial diagnosis there are no substantial breakthroughs in understanding the biological basis of autism as the goal posts keep getting moved to allow the dominance of genetic autism research to continue and to continue with the lion's share of research dollars. Today, like 15 years ago, possible environmental contributors to autism are largely ignored and receive only a small fraction of the autism research dollars available. 

Even our understanding of autism diagnostic criteria are about to change again and for what reason?  The DSM5 does not hold out any serious hope of increasing our understanding of autism disorders, symptoms, causes or possible treatments.  The DSM5 will undoubtedly muddy the waters of autism research even further. Debates still rage over whether the astonishing increases in autism diagnoses of the last 15 years are real or whether they are caused by increased social awareness and ... the diagnostic definition changes of the 1994 DSM-IV.  NOW in Conor's 15th year post autism diagnosis yet another definition will be forced upon North Americans?  How can this possibly help autism research?  

Services have been obtained for autistic children in various parts of North America in the 15 Conor autism years.  Here in New Brunswick I joined with other parents fighting for early intervention, school and services for autistic adults.  We made significant gains in early intervention service delivery as recognized by Dr. David Celiberti of the Association for Science in Autism Treatment and in our schools.  In adult care nothing has changed as yet,  nothing at all. Here in New Brunswick, Canada, we still dump our severely autistic adults in hospitals, jails, hotels and foreign facilities rather than develop our own enhanced adult autism network.  Many others live in group homes with untrained staff. The gains we made in early ntervention and schools are being eroded and adult care has not been addressed at all.

If I sound gloomy I don't intend to be.  I will advocate for Conor as long as I am alive and I can only do so by  being honest.  His autism challenges are real and I will not betray him by pretending that his autism is a joy.  Conor himself is a tremendous joy and the proof is in the pictures you can find on this blog site and on my Facebook page which is open to public view.  See for yourself.  Conor's autism is no joy but he sure is. 

DSM5 Autism Exclusion of ID? Study Finds Single Gene Mutation Known To Cause Intellectual Disability Increases Risk of Autism Disorders

If you believe the DSM5 Neurodevelopmental committee responsible for expressly removing those with Intellectual Disability from the new, oversimplified Autism Spectrum Disorder when they claim that exclusion is based on current science you may want to reconsider. The DSM5 ASD excludes those with intellectual disability if the ID "accounts for" the mandatory social communication deficits of the DSM5 ASD. Even if a child has ALL the mandatory deficits in A,B, C and D it doesn't count, they are still excluded,  if the category A, social communication deficits can be "accounted for by general developmental delays".   This intentional culling of the autism spectrum disorder is purportedly based on current research a claim which I have always found to be extremely dubious with respect to the exclusion of intellectually disabled.  A new study further confirms the lack of scientific basis for the exclusion of those with severe ID from the new ASD.

The very high co-morbidity of autism and intellectual disability has been known for many years and the most recent CDC estimates had placed the figure at between 41 and 44% of all persons with pervasive developmental disorders (now commonly referred to as autism disorders). The figure for autistic disorder itself had been estimated as high as 70% of persons with Autistic Disorder and ID.  CDC autism expert Dr. Marshalyn Yeargin-Allsopp had referred to those with intellectual disability as representing the "vast majority" of those with  classic Autistic Disorder.

In Autism and intellectual disability: a study of prevalence on a sample of the Italian population, La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF, the authors reported that their study confirmed the relationship between ID and autism and suggested a new approach in the study of ID in order to elaborate a new integrated model for people with ID and autism.  Despite the relationship between ID and autism the new DSM5 ASD will exclude those most severely affected by ID and autism.  The oversimplified DSM5 ASD has clearly rejected the call by La Malfa and colleagues for a new integrated approach preferring to artificially cleave ID off from ASD. 

Now a new study by the The Scripps Research Institute (TSRI) published in CELL, November 9, 2012,  appears to completely rip the foundation out from under the DSM5 attempt to disassociate intellectual disability and autism. It does so by showing how a single gene already known to cause intellectual disability also increases the risk of developing autism.  Given the known high co-morbidity and this reported genetic connection it is difficult to see how the DSM5 team can continue to justify its express, targeted exclusion of intellectually disabled from the new ASD but I am sure they will try.

e! Science News provides an overview of the study and interviews lead TSRI researcher Gavin Rumbaugh, PhD:

Scientists uncover secrets of how intellect and behavior emerge during childhood

Scientists from the Florida campus of The Scripps Research Institute (TSRI) have shown that a single protein plays an oversized role in intellectual and behavioral development. The scientists found that mutations in a single gene, which is known to cause intellectual disability and increase the risk of developing autism spectrum disorder, severely disrupts the organization of developing brain circuits during early childhood. This study helps explain how genetic mutations can cause profound cognitive and behavioral problems. The study was published in the Nov. 9, 2012, issue of the journal Cell.

 The genetic mutations that cause developmental disorders, such as intellectual disability and autism spectrum disorder, commonly affect synapses, the junctions between two nerve cells that are part of the brain's complex electro-chemical signaling system. A substantial percentage of children with severe intellectual and behavioral impairments are believed to harbor single mutations in critical neurodevelopmental genes. Until this study, however, it was unclear precisely how pathogenic genetic mutations and synapse function were related to the failure to develop normal intellect.

 "In this study, we did something no one else had done before," said Gavin Rumbaugh, a TSRI associate professor who led the new research. "Using an animal model, we looked at a mutation known to cause intellectual disability and showed for the first time a causative link between abnormal synapse maturation during brain development and life-long cognitive disruptions commonly seen in adults with a neurodevelopmental disorder."

The DSM5 committee members who have crafted this non evidence based new ASD will not be influenced by this recent study.  I saw Dr. Susan Swedo speak twice at Toronto IMFAR 2012.  She appeared more personally offended by criticism than interested in seriously addressing the merits of such criticism.  The several studies pointing out exclusions at both the HF and LF ends of the autism spectrum under the DSM5 regime are simply dismissed on the basis that they are using old data, that is information used in diagnosing persons currently assessed with autism under the DSM-IV.  The DSM5 team responded with a "mine's bigger than your's" study which was led by DSM5 team member Catherine Lord who had previously confessed to the NYT Amy Harmon that the objective of the new ASD was to target intellectually disabled for exclusion. Real objective stuff?

The DSM5 team has dug in its heels on the New ASD. It has been recoiling from criticism of possible exclusion of persons at the very high end of the autism spectrum.  As always both the media and autism researchers (with the exception of John Matson) simply disregard both the DSM5 ASD language expressly targeting for exclusion the intellectually disabled and Dr. Lord's express confession that the exclusion is intentional. The DSM5 team paid no apparent attention to the La Malfa study or to the authors' conclusion recommending a new approach in the study of ID in order to elaborate a new integrated model for people with ID. The odds of the DSM5 team taking the TSRI study any more seriously are slim to none. 

Autism 2013: Insel's Autisms or the Oversimplified DSM5 Autism Spectrum Disorder?

"If you’ve met one person with autism – you’ve met one person with autism." Stephen Shore 

The succinct and famous quote by Stephen Shore about the variation and complexity of autism disorders is cited often and just as often ignored. In fact it is ignored completely by the DSM5 which has merged high functioning autism and Asperger's into the streamlined New Autism Spectrum Disorder while ignoring the varied and complex realities, the heterogeneity of autism disorders.  As the parent of a severely autistic son with profound development delays, as an autism advocate who has visited adults with severe autism symptoms living in psychiatric facilities,  I do not agree with or support the vanilla flavored, stream lined DSM5 "autism". It does not reflect reality, it does not reflect the complex heterogeneity of autism disorders.

As a humble autism parent advocate  I am well aware that my opinions are worth   little to the DSM5 intelligentsia or to autism researchers generally. Most autism researchers tend to be courteous but dismissive, even condescending, in responding to my concerns about the express exclusion of the intellectually disabled under the DSM5 autism definition. That exclusion will make life easier for them as researchers but do nothing to help those who display all the symptoms of autism disorders but will be excluded because they are also intellectually disabled.

Autism researchers employing fMRI's that are widely featured and profiled in current autism research will be able to continue their misleading and unethical practices of excluding the most severely challenged autism participants while pretending their findings apply across the entire "autism spectrum".  Researchers will be able to continue their exclusionary practices because their needs are being accommodated by the DSM5 team which redefines autism to exclude those persons who are too difficult to study; who simply can not be counted on to sit still underneath a machine or to answer a questionnaire.

There are, however, voices that are more difficult to ignore; be they critics generally of the DSM5 or those who specifically critique the new autism definition.  Frances, Volkmar, Ritvo, Matson are but a very small selection of the credible autism and mental health researchers who have questioned the DSM5's  new and oversimplified Autism Spectrum Disorder.  In previous commentaries I have mentioned Lynn Waterhouse's writings on the complexity and variation of autism. Her vision of autism, as I understand it (while still working my way through her recent book on the subject) is inconsistent with the simplified autism of the DSM5.

Thomas R. Insel, M.D.. Director, National Institute of Mental Health (NIMH) and Chair of the IACC has not, to my knowledge, openly criticized the DSM5 generally or the DSM5 Autism Spectrum Disorder.  On his Director's Blog in the commentary Words Matter though he offers a picture of autism that reflects its complexity not the oversimplified, streamlined DSM5 version of autism:  

Words Matter

By Thomas Insel on October 02, 2012 

" ...  there are many barriers to progress, not all of them are scientific. Some involve policy, some involve poverty, and remarkably, some are simply linguistic. In mental health, we are stymied by our language. The most obvious linguistic problem can be found in our current diagnostic terms, what my predecessor Steve Hyman has called “fictive categories.” Terms like “depression” or “schizophrenia” or “autism” have achieved a reality that far outstrips their scientific value. Each refers to a cluster of symptoms, similar to “fever” or “headache.” But beyond symptoms that cluster together, there should be no presumption that these are singular disorders, each with a single cause and a common treatment. Recall that Bleuler, who first introduced the term schizophrenia over a century ago, referred to “the schizophrenias.” And with new genetic discoveries, scientists are beginning to describe “the autisms,” a group of neurodevelopmental disorders of diverse causes. 

.......  

"there is a more fundamental role for science, which is nothing less than the quest for understanding our world. The homeless man with schizophrenia, the non-verbal child with autism, and the soldier with PTSD need services and treatment, but also understanding—because the quest for understanding spawns compassion, intimacy, and even wonder."

Insel's autisms, a group of neurodevelopmental disorders with diverse causes, reflects the complex, varied, heterogeneity of autism symptoms and challenges. Lynn Waterhouse in  Rethinking Autism: Variation and Complexity has provided a similar perspective, an alternative to the DSM5's oversimplified and exclusionary Autism Spectrum Disorder.  

The APA will probably push through with the simple version of autism.  It will not advance the science involved in understanding autism.  It will not assist in finding causes, risk factors, treatment or cures for autism disorders.  It will not assist in  providing services that better fit the complex and varied challenges facing those who actually suffer from the daily limitations the autism disorders impose on their lives.

The DSM5 oversimplified  autism will probably be pushed upon us by Lord, Swedo and company. Hopefully though clinicians and researchers will not follow their lead and will instead consider the Waterhouse and Insel perspectives,  rethink the autism disorders, and embrace the varied and complex realities they present so that those who suffer from "the autisms" can be better helped to live happier,  more rewarding lives.

More Confirmation of Targeted Exclusion of Intellectually Disabled from DSM5 Autism Spectrum Disorder: But NO ONE CARES

Emily Singer has published an article at SFARI, Proposed guidelines won't miss autism cases, study says, which appears to suggest that persons who would meet DSM-IV PDD-NOS and Asperger's will "only" be reduced by approximately 10% under DSM5 criteria. The focus, as always, is on the HF end of the spectrum with no mention made of the intellectually disabled who will be excluded under the wording of mandatory criterion A of the DSM5. "We didn't see any evidence that there would be dramatically lower diagnosis of people with Asperger's or PDD-NOS," says Lord."

Catherine Lord has previously confessed that the real targets for exclusion from the DSM5's New Autism Spectrum Disorder are the intellectually disabled:

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

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

Persons with ID represented "the vast majority" of persons with autistic disorder according to CDC autism expert Dr. Yeargin-Allsopp. The DSM-IV addition of PDD-NOS and Aspergers reduced that figure to 41-44% according to recent CDC surveys.  The DSM5 exclusion under Criteria A for social communication even where  EVEN if all Critera A categories are otherwise exhibited will result in a further significant reduction in numbers of person with autism and ID. And that is the real aim of the DSM5 as Catherine Lord again confesses as reported in the Singer/SFARI article:

"Lord and her colleagues found that the DSM-5 is as sensitive as the DSM-IV, meaning it accurately identifies those who have autism. The DSM-5 criteria also have better specificity than those in the DSM-IV, meaning they can better distinguish between people who have autism and those who have other developmental disorders, the study found."

As set out above the real targets for exclusion from the autism spectrum under the DSM5 autism do-over are the intellectually disabled who are targeted by the addition of the "not accounted for by general developmental delay" disqualifying criterion in mandatory criterion A. Studies by J Matson have confirmed that substantial numbers, as many as 35.5%, of intellectually disabled who would meet DSM-IV autism criteria, will be excluded under the DSM5 criteria. 

In the DSM5 the evolution of autism into Aspergers continues with the targeting for exclusion of the intellectually disabled. But no one cares. Not Dr. Lord,  not Dr. Geraldine Dawson of Autism Speaks whose organisation has expressed concern over the possible impact of the DSM autism do-over on those at the HF end of the spectrum but not on the intellectually disabled. Not the New York Times and other major media who have worried over the possible HF exclusions.   The exclusion of some HF is possible, the exclusion of many LF intellectually disabled is certain but apparently no one cares about the intellectually disabled and the impact this exclusion will have on them.

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.

Asperger's Spectrum Disorder in the DSM-5: Why the Concealment?

One of the great DSM-5 puzzles to this father of a severely autistic son is the use of the label Autism Spectrum Disorder to describe what appears to be little more than a tweaked version of the DSM-IV's Asperger's Disorder.  The APA's DSM-5 team has replaced Autism with Aspergers, removed the most seriously intellectually disabled to the General Developmental Disorder category and further diluted the requirements for an autism diagnosis. Why not be open and transparent about the Aspergers substitution for Autism and the removal of the intellectually disabled from the Autism category?

The APA has purportedly merged the three Pervasive Developmental Disorders into one Autism Spectrum Disorder.  It would appear to be much more accurate though to refer to the new combined disorder as Asperger's Spectrum Disorder.  There is no signficant difference between the DSM-IV Aspergers Disorder and the DSM-5 Autism Spectrum Disorder. The DSM-5 converts autism into Asperger's by:

1) Collapsing three requirements for an autistic disorder into two for the DSM-5's new "Autism" Spectrum Disorder. The two categories are the two main requirements for a DSM-IV Asperger's Disorder diagnosis: qualitative impairment in social interaction and restrictive, repetitive and stereotyped patterns of behavior, interests and activities.  The spoken language deficits  of the DSM-IV'S communication category are subsumed under social communication eliminating spoken language impairment in itself as a diagnostic feature of autism.

2) Precluding an Autism Spectrum Diagnosis for persons with Intellectual Disabilities. Mandatory Criterion A in the DSM-5's brave new Autism Spectrum Disorder which precludes an ASD diagnosis where accounted for by "general developmental delays" which is the DSM-5 diagnostic terminology for Intellectual Disability. Mandatory Criterion A's.  

The Asperger's Spectrum Disorder masquerading as Autism Spectrum Disorder will accomplish three things:

1) It will further impair "autism" research. The 1994 DSM-IV autism changes are still being used to explain dramatic increases in autism diagnoses. The 2013 DSM-5 changes could permanently impair our understanding of autism causes and increases. This will prevent any serious epidemiological based research into possible environmental causes including substances, air, drugs, diet and water supplies, vaccines and vaccine ingredients,  affecting the pre-natal environment.

2) It could reduce public service costs for children with autism disorders by removing the most challenging cases of autism disorders: very low functioning intellectually disabled autistic children. The possible expansion on the other end of the Asperger's Spectrum may offset this reduction or may be affected by more serious emphasis on impairment of daily functioning levels in the DSM-5 era.

3) Legitimization of claims by very high functioning persons with current autism disorder and Asperger's diagnoses to speak on behalf of those most severely affected by autism.  The Neurodiversity movement is based for the most part on persons from this group and tends to be very supportive of efforts to  resist any serious environmental focused autism research including vaccine autism research.

The DSM-5 debates currently raging, spearheaded by Dr. Allen Frances,  will have no impact on the Asperger's (Autism) Spectrum Disorder category in the DSM-5. It is a fait accompli. Current autism research tends to exclude, for matters of convenience of the researchers involved, use of severely autistic study participants. The mainstream media reports serious tragic incidents involving the severely autistic but its features invariably focus on high functioning autistic\Asperger's\savant success stories. 

When looking at challenges the mainstream media tends at most to look at the social awkwardness of those with HFA\Asperger's. The recent Amy Harmon NYT "navigating love" feature is the perfect example of this aspect of MSM representation of autism.

Asperger's Spectrum Disorder is already with us; having unofficially taken over the  Autism label. Why the APA feels the need to officially hide that fact in the DSM-5 is puzzling.

DSM-5 Autism Shell Game

WordNet Dictionary  

Noun

1.

shell game - a swindling sleight-of-hand game; victim guesses which of three things a pellet is under Synonyms: thimblerig

The DSM-5 treatment of autism amounts to little more than a shell game with autism, which once referred essentially to autistic disorder being replaced with Asperger's Disorder.  Look at the description of A 09 Autism Spectrum Disorder in the DSM-5 which is referred to in the DSM-5 as a proposed revision for the DSM-IV Autistic Disorder:

A click on the DSM-5 A 09 Autism Spectrum Disorder tab for DSM-IV refers the reader to Autistic Disorder as set out in the DSM-IV leading one to think that the new Autism Spectrum Disorder is in fact just a modified version of the DSM-IV's Autistic Disorder:

The most obvious difference is in paragraph 2 which refers in the introductory line to qualitative impairments in communication. One of the sub-paragraphs which assists in fulfilling that requirement for meeting an Autistic Disorder is "delay in or total lack of the development of spoken language".  The narrowing of communication deficits from general communication deficits to social communication deficits is not just a revision, it is a re-definition of autistic disorder.  Removing this important characteristic from "autism" constitutes an essential change from Autistic Disorder, at least from the perspective of this father of a son with autistic disorder who has had both delays in language development and a lack of full language development.

As can be seen in the DSM-IV description of Asperger's Disorder removing any reference to general language delay or development renders the new Autism Spectrum Disorder much more like the DSM-IV description of Asperger's Disorder which states in paragraph D that there is no clinically significant general delay in language. The only reference to language deficit in the new ASD is in the reference to social communication, a specific not general language deficits. Again, I am a humble parent and small town lawyer not an Ivy League educated psychologist or psychiatrist but I have to assume that language and general communication developments are among the most fundamental aspects of any human's development. To remove the general language and communication deficits from Autistic Disorder and substitute social communication deficits appears to me to be a straight forward substitution of Aspergers for Autistic Disorder in defining the New Autism Spectrum Disorder in the DSM-5.

Consistent with substitution of Asperger's Disorder for Autistic Disorder is the exclusion of persons from Autism Spectrum Disorder diagnosis where the mandatory social communication and social interaction deficits required under criterion A are "accounted for by general developmental delay". I have commented on this exclusion several times and I see no other reasonable interpretation of the exclusionary language in Criterion A of the new Autism Spectrum Disorder. Criterion A effectively brings to the DSM-5's new Autism Spectrum Disorder criteria D and E of the DSM-IV's Asperger's Disorder description ... no clinically signficant delay in language and no clinically signficant delay in cognitive development.

A reasonable interpretation of the DSM-5's new Autism Spectrum Disorder is that it essentially substitutes Asperger's Disorder for Autistic Disorder. Asperger's Disorder IS the New Autism Spectrum Disorder of the DSM-5.  The language of the DSM-5 which purports to show Autism Spectrum Disorder as a revision of the DSM-IV's Autistic Disorder is misleading, whether intentional or not, and it helps conceal  under which shell the "autism pellet",  in the new DSM-5 is located. The DSM-5 new Autism Spectrum Disorder is located under the DSM-IV's Asperger's Disorder. 

The DSM-5's new Autism Spectrum Disorder is no more than a glorified shell game with low functioning, intellectually disabled autistic persons and their families the unwitting victims. The new Autism Spectrum Disorder would be more accurately described as Asperger's Spectrum Disorder with the many severely affected, low functioning, intellectually disabled autistcs of the DSM-IV excluded.. 

Asperger's is the New Autism: No Intellectually Disabled Allowed in the DSM-5's New Autism Spectrum Disorder

"the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers for Disease Control and Prevention. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development. Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

Dr. Marshalyn Yeargin-Allsopp, Canadian Medical Association Journal,CMAJ • July 13, 2010; 182 (10). First published June 7, 2010; doi:10.1503/cmaj.109-3274  


Dr. Yeargin-Allsopp's description of the diminution of autism's vast majority, those with intellectual disability, is noteworthy today as we await the commencement of the DSM-5 era and the complete elimination from any autism diagnosis of persons with intellectual disabilities. That accomplishment will be achieved by the DSM-5's New Autism Spectrum Disorder definition and diagnostic criteria which expressly exclude an ASD diagnosis in instances of general developmental delay:

The New Autism Spectrum Disorder in the DSM-5 will eliminate any debates over the exent of intellectual disability amongst those with autism spectrum disorders.  The new definition will complete the process begun in the DSM-IV of diminishing the rates of ID amongst those with autism by changing the definition of autism to exclude those with intellectual disability.   The formula is simple and straight forward.  To be diagnosed with autism a person must meet all 4 criteria, A, B, C and D.  Criteria A requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays".   If a person suffers from "general developmental delay" that will account for persistent deficits in social communication and social interaction across contexts and the person will not meet the mandatory Criterion A and will not  receive an autism spectrum diagnosis under the new DSM-5.

General developmental delays is a reference to the DSM-5 diagnostic category of Intellectual Developmental Disorder (IDD) which is described as including a current intellectual deficit and a deficit in adaptive functioning.  IDD is further described in two of the mandatory criteria for meeting and IDD diagnosis  as including deficits in general mental abilities. IDD mandatory criterion B refers expressly to impaired functioning in areas of daily life including communication and social participation.  An IDD diagnosis then would account for deficits in social communicaiton and social interaction and preclude an Autism Spectrum Disorder diagnosis under the DSM-5

 The exclusion of an autism diagnosis for persons who are generally developmentally delayed is a substantive change from the DSM-IV  which did not exclude an Autistic Disorder diagnosis in persons who suffered from  general developmental delay, intellectual disability or mental retardation:

The exclusion of persons with Intellectual Developmental Disorders from the New Autism Spectrum Disorder does have a precedent in the DSM-IV.  It is found in the DSM-IV's Asperger's Disorder which states in Criterion E that "there is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills".  And there it is "no cognitive development delay" from the DSM-IV Asperger's Disorder criteria becomes not accounted for by general developmental delay in the DSM-5's Autism Spectrum Disorder.   Asperger's becomes the New Autism in DSM-5 World.

Autism Speaks has long been aware of the APA intention to remove persons with intellectual disability from consideration for autism spectrum disorder diagnoses. Autism Speaks rarely mentions intellectual disability as an autism concern.   It has already been busy presenting Asperger's to the public as Autism  with the promotion of the careers and influence of John Elder Robison and Alex Plank.

Autism Speaks also helped fund the Korean "autism" prevalence study of Roy Richard Grinker who has been busy recasting Asperger's as autism and who went looking for "autism" amongst Korean students who functioned well in Korea's highly structured school environments.  No intellectually disabled were included amongst Grinker's findings of  large numbers of previously unknown autistics.  Of course Professor Grinker, the APA and "Autism Without Intellectual Disability Speaks" will have to readjust their autism prevalence numbers once the DSM-5 officially takes effect.  They will have to revise their autism rates downward to reflect the removal of persons with DSM-IV Autistic Disorder and intellectual disability from the DSM-5's Autism Spectrum Disorder.  Asperger's is the New Autism. 

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

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CDC Facts: Autistic Disorder and Intellectual Disability

Honest discussion of many autism subjects will invite hostility from different quarters of the alleged autism community. One example is the connection between Autistic Disorder and Intellectual Disability.  Few will even discuss the obvious fact that many persons with Autistic Disorder are also Intellectually Disabled.  Attempts to discuss Autistic Disorder and Intellectual Disability are met with overt hostitlity even though Intellectual Disability is a fact of classic autism or Autistic Disorder:.

The CDC Autism Spectrum Disorders (ASDs) Facts section of the CDC web site states this fact simply and clearly:

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. 

(emphasis added -HLD)

With the expansion of the definition of autism in the 1994 DSM-IV the concept of autism has come to include many very intelligent, high functioning persons as autistic and the intellectual disability component of autistic disorder is erroneously but intentionally set aside as a "comorbid" or "coincidental" condition, a process that will be worsened with the New Autism Spectrum Disorder category in the DSM-5.  The obvious connection between autism (pervasive developmental delay) and intellectual disability will be pushed even further from our consciousness.  

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.

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Repressive Autism Advocacy: ASAN Does Not Represent Other People's Autistic Children

ASAN, the "Autism" Self Advocacy Network, is more than just a network for high functioning persons with PDD's or Autism Spectrum Disorders. It goes beyond simply representing the interests of its members and insists on challenging the rights of other persons, usually children, to receive representation of their interests through their parents and other caregivers. It attacks on a continual basis organizations like Autism Speaks, as it does in this latest press release, for attempting to help persons, primarily children, with Autism Spectrum Disorders recover from, or be cured of, their neurological disorder.

Autism Spectrum Disorders is the term commonly used today to describe the category of various neurological disorders listed as Pervasive Developmental Disorders in the DSM-IV, the Diagnostic and Statistical Manual of the American Psychiatric Association. The expression contains one word which is often used by ASAN, sometimes questionably, autism. I say questionably because some of the leading lights of the ASAN organization have Aspergers Disorder, a similar but distinct, disorder from that of Autistic Disorder from which the common usage borrows the term autism.

I also say questionably because some people with Aspergers Disorder or a high functioning variety of Autistic Disorder, actually purport to speak on behalf of all children and adults with Autistic Disorder, even though those persons, particularly children are usually represented, as is their right, by parents in the first instance, grandparents and other family members or state caregivers. ASAN actually goes so far as to attack organizations such as Autism Speaks which comprises many parents and family members of autsitic chldren precisely because they seek to overcome their own children's neurological disorders.

ASAN has the right to speak on behalf of its members and to tell the world that its members do not want to be cured. They have no right to oppose the treatment or cure of autistic children in the care of their parents or other caregivers. Under the United Nations Declaration of the Rights of the Child a child has the right to available treatment for their medical conditions. The UN Declaration of the Child, 1958, expressly recognizes that the child will be represented in the first instance by his or her parents. Not by a stranger somewhere else in the world who shares the same or a similar medical diagnosis. Apart from the lack of a legal right the high functioning autistic and Aspergergian persons who comprise ASAN lack a common shared reality with many of the people who they falsely claim to represenet. They have no legal, informed or moral right to advocate on behalf of Conor Doherty or the other children of other people with whom they have little in common.

In attacking Autism Speaks, and parents and parent organizations seeking to treat or cure autistic children, ASAN is overreaching and attempting to suppress the rights of autistic children, the right to treatment and cure of their neurological disorders and their right to be represented by their parents.

In doing so ASAN betrays itself as a repressive organization.

It is time ASAN stopped pretending to represent other people's children.

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