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 Disorder Edward 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. 

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.

Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash

I have never accepted, and have in fact been openly contemptuous of, the view that autism is a joy, an alternative, even superior way of thinking.   My son's autistic disorder diagnosis accurately describes autism as it really is ...  a disorder, one that  impairs the lives of those, like my son Conor, who suffer from that disorder.  In my view those who promote autism as anything other than what is, who portray autism as a feel good alternative way of thinking delude themselves and ill informed members of the public. In societies where the public participates in a democratic process to determine what services and interventions will be made available to help those in need the light and fluffy portrayals of autism do a serious disservice to those with severe autistic disorders who require help in living and enjoying their  lives.

In the picture above, and most that follow these comments, my son is shown enjoying time on the swings at the neighborhood grade school he attended several years ago.  We arrived early and no one else was present on the grounds. There was no sensory overload.  It was overcast and mildly cool but very pleasant. We made no demands on Conor and let him enjoy his time on the swings which, for the most part, he did.  We were there only  a few minutes though when, quite suddenly and with no discernible external causal factors, no external stress factors, he began hitting himself on the head.  There was no apparent internal cause for his sudden shift to self injurious behavior either.  He had enjoyed breakfast and had visited our washroom facilities for personal reasons.  He showed no indication of discomfort whatsoever prior to switching suddenly from enjoying the swings to self injury. 

Conor's sudden shift from enjoying the swings to self injury suprised me only because it was so sudden and occurred while he was thoroughly enjoying himself.   After 16 years of 24/7 caring for my son I have no idea what caused this specific outburst of Self Injurious Behavior (SIB) any more than most similar incidents where there were no obvious external or internal causes.  What I do believe, and believe fully, is that such sudden SIB's are a result of his neurological disorder, his autistic disorder.  I don' t give a darn whether any autism experts accept my anecdotal evidence or not.  Conor's SIB is part of his autistic disorder.  The many well intentioned autism researchers who gathered in Toronto for the IMFAR convention might wish to consider spending more of their time, resources and intellects reseaching Self Injurious Behavior in persons with Autistic Disorder or Autism Spectrum Disorder as it will be officially known after May 2013.