2013: The Year Of Autism's Grand Error, The DSM5 Autism Spectrum Disorder

Photo by Harold L Doherty

Edward Ritvo-Susan Swedo Shootout at 

the IMFAR Corral, Sheraton, Toronto, May 18, 2012

The year 2013 will be remembered as the year the simplified DSM-5 Autism Spectrum Disorder definition was imposed on a very complex and diverse group of disorders and/or symptoms.  Catherine Lord, Susan Swedo and other members of the DSM-5 committee responsible for the definition change simply ignored criticisms of their proposals and pushed ahead because, in their minds, they know better than their critics.

It would be one thing if the DSM5 Autism Spectrum Disorder critics were simply parents like me. As mere irrational parents we had no standing, no credibility, no respect in the eyes of the DSM5 committee members and our views did not have to be considered.  What was amazing about the incredible stubbornness of the DSM5 committee members in pushing ahead though was the identity of some of the professional critics and the serious challenges that were dismissed without any serious response by the DSM5 team. Ritvo, Volkmar, Waterhouse,  are only a small sampling of the names of persons with important roles in the development of knowledge of, and thinking about, autism spectrum disorders who offered  criticisms of the DSM5 Autism Spectrum Disorder: 

"Abandoning criteria that have been in worldwide use for decades for new ones that may eliminate from 9% (their data) to 40% (prior reports) of previously diagnosed patients is neither scientifically nor morally justified."

- Commentary on the Application of DSM-5 Criteria for Autism Spectrum DisorderEdward R. Ritvo, M.D.; Riva Ariella Ritvo, Ph.D. Am J Psychiatry 2013;170:444a-445. doi:10.1176/appi.ajp.2013.12101376

Dr. Fred Volkmar created considerable awareness of the DSM5 ASD changes and their likely impacts with a  preliminary study reported on in well known New York Times article in early 2013.  In a May 2013 abstract he also noted that:

"While some of the changes employed in the new DSM-5 approach are praiseworthy, others are much more complicated. There appears to be some significant potential for diagnostic change, essentially as – despite what might conceptually appear to be a broader tent of the autism spectrum – the DSM-5 approach seems likely to result in a narrower concept. This raises some concern about the impact on services for children in need as well as for comparison with previous research. Sadly we are, to a considerable extent, still in the dark on the extent of this change. Although the focus on standardized diagnostic instruments has some important advantages in the real world of clinics and schools, clinicians will not have had the opportunity to undertake extensive training. In some cases the new (but relatively unclear) social communication disorder concept may be invoked, but the lack of research on this putative condition poses other problems and its use might well be taken as an excuse to avoid service provision."

Dr. Lynn Waterhouse worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism and is the author of Rethinking Autism: Variation and Complexity (2012) whose book was reviewed on the Amazon.com website by several learned commentators including Dr. Peter Szatmari who noted that "Waterhouse squarely tackles the "elephant in the room" in autism research; the complex heterogeneity seen at all levels of analysis.  The argument is sustained, learned and comprehensive. We shall all be dealing with this challenge for decades." 

Dr. Waterhouse subsequently commented in an email to DSM-5 critic Dr. Allen Frances which he included in one of his Psychology Today commentaries on the DSM-5. In her email, after reviewing some of the reports and studies crtiquing the DSM-5's New Autism Spectrum Disorder Dr. Waterhouse stated:

"These and other independent research groups have reported that DSM-5 ASD criteria will significantly reduce the number of ASD diagnoses. Their findings counter Dr. Lord's claim that DSM-5 ASD criteria will not change the number of people diagnosed. Because nearly all of those excluded from a DSM-5 diagnosis have serious developmental social interaction impairment, they cannot be correctly diagnosed by any of the other DSM-5 childhood disorders, such as Social Communication Disorder or Intellectual Developmental Disorder. These children will need services that will be more difficult to obtain without a DSM-5 diagnosis. Unfortunately, the DSM-5 group has chosen to simply ignore data that don't conform with its beliefs." (Emphasis added, HLD)

The DSM-5 Autism Spectrum Disorder is a mistake, a huge mistake, supported not by research as was perpetually articulated by DSM-5 spokespersons but solely by the preferences and intellectual biases of of the DSM-5 committee team members who pushed the new definition ahead while ignoring contrary studies, criticisms and perspectives offered by MANY learned autism professionals and academics.

2013 is the Year of Autism's Grand Error - the DSM-5 NEW Autism Spectrum Disorder. 

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

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

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

""Autism Spectrum Disorder

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

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

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

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

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

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

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

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

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp

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

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

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

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

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

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

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

Congratulations APA! Congratulations "Dr" Catherine Lord!

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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. 

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DSM5 Autism's Targeted Exclusion Of Intellectually Disabled Is NOT Based on Research Evidence

Dr. Catherine Lord has attempted to sell her DSM5 New Autism Spectrum Disorder in a comment at the Huffington Post by telling the ignorant, unwashed public that we have nothing to fear from the DSM5 Autism changes. Dr. Lord is trying to paint those who disagree with the DSM5 Autism Do-Over as irrational  thereby deflecting legitimate criticism which she and her DSM5 colleagues have not been able to credibly answer.  My criticism of the new DSM5 is two fold. 1. It expressly targets for exclusion the intellectually disabled who are also autistic and 2. It oversimplifies a complex disorder.  

I have commented for the past 2 1/2 years on the DSM5's  targeted exclusion of the intellectually disabled. The new definition excludes persons with profound intellectual disability from an autism diagnosis even if they display ALL of the diagnostic criteria.  This exclusion is derived from the convenience of researchers and clinicians who find the challenge of working with severely autistic, profoundly intellectually disabled persons too overwhelming.   Dr. Lord herself pointed out the tendency of autism researchers to exclude those with multiple disabilities and moderate and severe intellectual disability in  Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""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]

Parents of children with severe autism and intellectual disabilities can not simply abandon our children. Unlike parents, autism researchers and DSM5 autism committee members do not have to find ways to work with the most challenged autism cases.  They simply exclude them by redefining them out of the spectrum.  They do so by ignoring the evidence of those diagnosed with autism and ID by existing criteria.

The express exclusion, "not accounted for by general developmental delays"  occurs in the introductory paragraph to mandatory criterion A of the DSM5 ASD definition:

"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:"

Lynn Waterhouse in her newly released book "Rethinking Autism" Variation and Complexity, pages 382-385, references this express exclusion and argues that the exclusion of those with intellectual disability is NOT evidence based.  She points out that the exclusion is based on a faulty, non evidence based assumption that a  person's intellectual or cognitive disability causes the social communication deficits. Waterhouse argues that the exclusion of the intellectually disabled IGNORES evidence of published, credible,  studies indicating that 55-70% of those diagnosed with autism by prior criteria experienced intellectual disability based developmental delays.  The exclusion also ignores  genetic, chromosomal and neuroscience studies showing substantial overlap between cognitive disability and social communication deficits. 

Dr. Lord confessed in the NYT Amy Harmon interview that the DSM5 team targeted intellectually disabled for exclusion from the new Autism Spectrum Disorder.  That targeted exclusion of the intellectually disabled is not evidence based. It is not helpful to understanding autism disorders generally and will cause harm to the most severely affected by autism, the ones who are, apparently, too much of a challenge for Lord and the DSM5 Autism Do-Over team. The exclusion of the intellectually disabled from the new autism disorder, while not evidence based, serves the interests of researchers, clinicians and services providers who lack the good conscience and the intestinal fortitude to work with the most severely affected by autism disorders: those with  general developmental delays, those with intellectual disability.

I don't know if the DSM5 Autism team has a motto. An accurate, honest one might be:

"DSM5, simplifying autism complexity by ignoring the evidence; helping those with autism disorders, except those who are too challenging and inconvenient."

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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.

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Autism Researcher Bias and the Targeted Exclusion of Intellectually Disabled in the DSM-5 Autism Do-Over

Autism researcher bias exists and its effect, when the DSM-5 takes effect in 2013,  will further the redefinition of autism as social awkwardness and the exclusion from the autism spectrum of persons with severe intellectual disabilities.  

David Kupfer, M.D., chair of the DSM-5 Task Force,  has stated that "the proposed ASD criteria are backed by the scientific evidence". Dr. Kupfer was not addressing the exclusion of the persons with autism and severe intellectual disabilities when he made that statement.  He was responding to the criticisms that the new Autism Spectrum Disorder would target high functioning autistics for exclusion. Scientific evidence in respect of autism disorders is found  by autism researchers though and autism researchers are clearly biased  against inclusion of low functioning, intellectually disabled persons with autism in the their research studies.  The DSM-5 New Autism Spectrum Disorder, based on that same research, reflects the researchers' bias against inclusion of intellectually disabled persons and is intentionally designed as was confessed by Dr. Catherine Lord, to remove persons with classic autistic disorder and intellectual disability from future autism diagnoses.

I do not think the DSM-5  committee responsible for the New Autism Spectrum Disorder will yield to pressure to  revisit the new autism diagnostic criteria. I attended IMFAR 2012 in Toronto and specifically attended two presentations by Dr. Susan Swedo of the committee responsible for the new autism definition.  She was visibly upset over the criticisms received from those concerned with the possible exclusion of very high functioning persons from the autism spectrum but she dug in her heels. She did confirm, in response to my questions after the second presentation, that some intellectually disabled will not be diagnosed with autism under the DSM-5 definition who might have received an autism diagnosis under the DSM-IV.  If there is any change it will come on the high functioning end and will tend to include more high functioning autistic persons, the subjects of much interest by NYT reporter Amy Harmon and others in the Mainstream Media. At the same time there is no significant pressure on the DSM-5 committee members to reconsider the express exclusion of the intellectually disabled in mandatory criterion A of the DSM-5 Autism Spectrum Disorder.  

CDC autism expert Dr. Marshalynn Yeargin-Allsopp stated in an interview with the  Canadian Medical Association Journal that the vast majority of persons with classic autism, approximately 80%, also had intellectual disabilities prior to the DSM-IV addition of Aspergers which effectively watered that figure down to approximately 40%:

"Prior to the 1980s, only those exhibiting autism’s classic symptoms (communication and behavioural difficulties and a lack of social interaction) were considered affected. Those symptoms remain the foundation of “classic” autism.  But 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."


The DSM-IV effectively expanded the definition of what constituted autism and, in the process, reduced the presence of the intellectually disabled on the autism spectrum from vast majority status to minority status. Since then the Mainstream Media regularly does a feature on the accomplishments of Dr. Temple Grandin and other very talented high functioning persons with autism/Aspergers.  Michelle Dawson and Ari Ne'eman who function very well in complex and challenging legal, political and media proceedings command attention and help redefine autism from a disorder with significant daily living impairments to a different, superior way of thinking. Meanwhile those most severely affected by classic autism disorders, particularly the vast majority with intellectual disability, remain largely invisible,  marginalized by Neurodiversity identity ideology which disowns their presence on the autism spectrum and by media obsession with feel good stories including movies and television shows featuring brilliant characters with Aspergers.

The primary agent in the final push to remove those with intellectual disability from the autism spectrum is the bias of autism researchers.  Bias is certainly a factor in autism research as noted by High Functioning Autism expert and anti-ABA activist Dr. Laurent Mottron in his Nature commentary in which he paid lip service to the quaint notion of autism as a disability affecting some but then  displayed his own bias by redefining autism in terms of the autistic researchers who work with him:

"I am a researcher, clinician and lab director concentrating on the cognitive neuroscience of autism. Eight autistic people have been associated with my group: four research assistants, three students and one researcher. Their roles have not been limited to sharing their life experiences or performing mindless data entry. They are there because of their intellectual and personal qualities. I believe that they contribute to science because of their autism, not in spite of it. Everyone knows stories of autistics with extraordinary savant abilities, such as Stephen Wiltshire. None of my lab members is a savant. They are ‘ordinary’ autistics, many of whom, on average, outperform non-autistics in a range of tasks, including measures of intelligence." (Underlining and bold highlighting  added - HLD)


Mottron also noted autism researcher bias in his Nature commentary:

"Even researchers who study autism can display a negative bias against people

with the condition. For instance, researchers performing fMRI scans systematically report changes in the activation of some brain regions during a task as indicative of a deficit in the autistic group, rather than of their alternative, yet sometimes successful, brain organization."

Dr. Mottron's own bias is on ironic display in the above quote when he references fMRI scan result interpretation as indicative of autism researcher bias.  He fails to mention that such scan studies routinely exclude low functioning, severely autistic subjects because of the difficulties in managing the behaviors of such subjects during the examination process.  This bias against the low functioning, severely autistic would include the vast majority of persons with classic autism and intellectual disability.  Mottron, who has written many published journal articles on persons with High Functioning Autism and Aspergers, has demonstrated his own bias against those with autism and intellectual disability by arguing with flimsy, if any, evidence that intellectual disability does not exist in autism. 


A recent autism study employed lower functioning autistic subjects.  In A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typical controls – a large case control study, Frank H. Duffy and   Heidelise Als used classic autism subjects because of the tendency of autism studies to exclude them as reported in the study press release:

"Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications. 

"We studied the typical autistic child seeing a behavioral specialist – children who typically don't cooperate well with EEGs and are very hard to study," says Duffy. "No one has extensively studied large samples of these children with EEGs, in part because of the difficulty of getting reliable EEG recordings from them." 

Autism research has generally tended to exclude low functioning autistic participants as was acknowledged by  an article in the Financial Times about the DSM-5's new autism spectrum diagnostic criteria Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine noted the presence of  a high functioning autism bias in autism research:

"Erickson noted that there is often a bias in clinical trials, where high-functioning patients are typically enrolled as they are more readily able to tolerate routine procedures such as blood tests part of clinical trials. Further, it is easier to make improvements in less-impaired children, Elliott said, noting the Phase II Kuvan in autism trial included children with IQs in the 50-60 range as well as Asberger patients."

Dr. Catherine Lord of the DSM5 committee that has crafted the New Autism Spectrum Disorder has also noted the tendency of autism research to exclude those with multiple disabilities and moderate and severe intellectual disability in  Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""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]

The APA has stated in its form letter reply to those who submitted concerns to them about the new Autism Spectrum Disorder criteria that the new definition is based on existing research:

"The [DSM-5 Autism Spectrum Disorder] proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders."

Notwithstanding the known and acknowledged distortion of autism research because of researcher tendency to exclude, for reasons of convenience, autistic participants with intellectual disabilities the DSM-5 work group is relying on that same research to justify the intentional (as confessed by Dr. Catherine Lord and confirmed by Dr. Susan Swedo at IMFAR 2012) exclusion from future DSM-5 autism diagnoses of persons with intellectual disabilities. 

As the father of a severely autistic 16 year old son with "profound developmental delays" I do not have the luxury of excluding my son from the realities of haircuts in busy hair salons, dental and other medical procedures and countless other challenges of daily life. I have to deal with and face those realities in my son's best interests.

The conduct of autism researchers in excluding low functioning autistic participants with intellectual disabilities from autism research and, inevitably from the DSM-5 era of autism diagnoses, is not justified by their own professional requirements either.  An Italian study, instead of trying to cleave meatloaf at the joints by removing the intellectually disabled from the autism spectrum, took the  opposite approach and having found a close connection between ID and autism disorders recommended future research into that connection. In Autism and intellectual disability: a study of prevalence on a sample of the Italian population. La Malfa G, et al concluded  that their study:

 "confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID."

The DSM-5 team, like so many autism researchers on whose work they based their new Autism Spectrum Disorder, have chosen to ignore the recommendation from the Italian study and pretend that no relationship exists between ID and  autism disorders.  They have betrayed the most severely affected by autism disorders those with autism and intellectual disability.

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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. 

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Volkmar Says Many Intellectually Disabled May Be Excluded from DSM-5 Autism Spectrum Disorder Diagnosis

When I first pointed out that the DSM-5 New Autism Disorder would exclude intellectually disabled I was ignored by most, insulted and mocked by others.  Some were annoyed. When Catherine Lord confessed that the intellectually disabled were the real target for exclusion very few mentioned the exclusion of the intellectually disabled from the DSM-5 autism definition.  Certainly not the New York Times and other prominent Mainstream Media institutions that have wrung their hands over the possible exclusion of the very high functioning Autism ruling class.  

When Fred Volkmar, who kick started the current uproar over the possible exclusion of some with high functioning autism and Aspergers, mentioned in a Yale Daily News interview the possible DSM-5 exclusion of many of the intellectually disabled it did not merit any response from the MSM:

"In its next manual on mental disorders, the American Psychiatric Association plans to issue a single set of diagnostic criteria that will merge the four types of disorders on the autism spectrum, which include autism and Asperger syndrome. Although no current patient will be affected by the new rules, research by Yale Child Study Center Director Fred Volkmar suggests that the revision may disqualify a large number of intellectually disabled patients from receiving a diagnosis of autism spectrum disorder in the future."  [Underlining added for emphasis - HLD]

The autism spectrum is not just a spectrum. It is a caste system with the intellectually disabled occupying the lowest rung unworthy of concern or comment from the mainstream media or feel good, autism is beautiful, Neurodiversity variety autism advocates.

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Language Level and Cognitive Function Recognized As Affecting Autism Disorder Severity

In Diagnoses of Autism Spectrum Disorders Lack Reliability Pysch Central senior news editor Rick Naubert Ph.D., (article reviewed by John M. Grohol, Psych D) reports on a new study by Catherine Lord, Ph.D. and  colleagues that examined the relationship between autism diagnoses and behavioral appearances at 12 university sites.  The found that clinical distinctions among subtypes of autism spectrum disorders were not reliable and speculated that regional variations could be affected by availability of services for those with autistic disorder in some regions. Conversely greater stigmatization associated with autistic disorder could also affect the type of ASD disorder received. 

As I interpret the Psych Central report on the study the study authors are asserting that the results support the DSM5's new combined Autism Spectrum Disorder which although creating a combined autism spectrum disorder also divides the spectrum by severity and functioning levels:

"The authors point out that their study results have implications for revisions of current diagnostic frameworks.

“Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function,” they conclude." (Underlining added, HLD)

Neurodiversity activists, including Mottron and Dawson, will not be happy with any mention of cognitive functioning dimensions or levels in connection with autism disorders. It will be interesting to read their statements opposing the results and the suggested implications of the Lord study.

It is also interesting to note that association with the lower functioning end of the Autism Spectrum, the Autistic Disorder category which contains the vast majority, the 70% of autistics with intellectual disabilities, is considered to be so stigmatizing as to affect the type of autism spectrum diagnosis given by health care professionals.  

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DSM5 Exclusion? Autism Research Already Excludes Intellectually Disabled

"All children had normal IQ"

Abstract - Methods, Cheung C. et al, MRI study of minor physical 
anomaly in childhood  autism implicates aberrant neurodevelopment in infancy 

I have written several times on the exclusion of the intellectually disabled from autism diagnoses in the DSM5. Some people whose opinions I genuinely respect, but disagree with on this subject, have indicated that my interpretation of the new Autism Spectrum Disorder wording is incorrect. I am not convinced, much as I would like to be, and I have not been persuaded that my interpreation is incorrect.  

Another point I have made, which dovetails with this issue, is the exclusion of the intellectually disabled from autism research, a trend which has been going on for some time and is particularly clear in the MRI autism brains scan studies. The Cheung et al study published recently follows this trend: PLoS One. 2011;6(6):e20246. Epub 2011 Jun 8.

The exclusion of the intellectually disabled from the DSM5 Autism Spectrum Disorder, which might more accurately be called the Aspergers Spectrum Disorder, is in fact following the recent tendency to exclude the intellectually disabled from autism research. As a parent of an autistic son with "profound developmental delays" my opinion on this autism research tendency  is probably considered suspect but I would refer doubters to the statement by Catherine Lord, prominent autism researcher and DSM panelist in Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""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]

Autism research, for what appear to be nothing more than reasons of research convenience, has already excluded intellectually disabled subjects. The DSM-5's Autism Spectrum Disorder reflects this trend. The severely affected by autism, the intellectually disabled, will be excluded from the ASD, from services and from our consciousness ... out of sight, out of mind.  

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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.

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