Intense World Theory Of Autism? Or Just More Intense, Harmful Speculation?

My younger son will be 18 this month.  He is severely autistic, with intellectual disability, and suffers from seizures for which he receives medication.  He was diagnosed with an autistic disorder the day after his second birthday.  The diagnosis was made after several months of testing and observation.  Since my son's diagnosis the defining criteria for an autism disorder diagnosis has changed.  It has become increasingly clear that "autism" as a disorder, as a concept for understanding my son's condition has become lost in a system, the DSM,  that NIMH Director Tom Insel has said lacks validity.  Insel, in another flash of common sense and candor,  has referred to the "autisms" rather than a single autism.  The unitary spectrum DSM5 ASD has been foisted on the world in an exercise of professional vanity unjustified by any convincing evidence base, built instead on a sloppy base of assumptions that will fulfill a policy goal of "reducing" autism diagnoses while excluding very high functioning AND difficult, severe autisms, from "autism" research and from autism insurance coverage.  Against this background a new "theory" of autism has emerged .... the Intense World Theory.  

It is beyond me as a common sense driven father who has lived with my son's severe autism and tried to ensure the best life possible for him how autism researchers, years after the Refrigerator Mothers/cold parents fantasy of autism causation caused so much very real harm, could blithely jump into the deep end of another potentially harmful, non evidence based autism fantasy. 

Maybe the Intense World Theory WILL prove to be the "unifying" theory that it pretends to be.  Personally I doubt it.  As the authors, K and H Markram's abstract itself makes clear: "Autism covers a wide spectrum of disorders for which there are many views, hypotheses and theories." Why do the Markrams then immediately propose a unifying theory of autism instead of studying the various individual "autisms"?  Why assume that attempting to unify the autisms, what is now widely regard as a heterogeneous, varied set of disorders/conditions/symptoms will be of any benefit to understanding those conditions or discovering treatments for them?

As the father of an autistic son my 18 years of direct experience and observation with years of severe autism disorder of my son is given no weight by autism researchers but I no longer automatically give the researchers a pass either in assessing their classroom/clinic/lab understanding of autism.  My son, diagnosed at age 2 and a day because of the severity of his symptoms does not have the same "autism" as J E Robison, Ari Ne'eman or any other very high functioning, diagnosed as adults, "autistics". I do not believe my son's "autism" or group of symptoms called autism, can be unified in any meaningful way with the autisms of these very, very high functioning individuals. 

With the view that autism is a single disorder under challenge from some very credible sources I am surprised to see a "unifying" theory of autism being put forth at this time ... with no evidence basis.  As an admittedly self appointed director of  "autism research" I direct the research community to take several large gulps of humility and go straight to the Common Sense Clinic where you can focus on researching and finding treatments for the individual conditions, symptoms and challenges of the various "autisms".    

The intense world theory - a unifying theory of the neurobiology of autism.

Markram K, Markram H.

Author information

Abstract

Autism covers a wide spectrum of disorders for which there are many views, hypotheses and theories. Here we propose a unifying theory of autism, the Intense World Theory. The proposed neuropathology is hyper-functioning of local neural microcircuits, best characterized by hyper-reactivity and hyper-plasticity. Such hyper-functional microcircuits are speculated to become autonomous and memory trapped leading to the core cognitive consequences of hyper-perception, hyper-attention, hyper-memory and hyper-emotionality. The theory is centered on the neocortex and the amygdala, but could potentially be applied to all brain regions. The severity on each axis depends on the severity of the molecular syndrome expressed in different brain regions, which could uniquely shape the repertoire of symptoms of an autistic child. The progression of the disorder is proposed to be driven by overly strong reactions to experiences that drive the brain to a hyper-preference and overly selective state, which becomes more extreme with each new experience and may be particularly accelerated by emotionally charged experiences and trauma. This may lead to obsessively detailed information processing of fragments of the world and an involuntarily and systematic decoupling of the autist from what becomes a painfully intense world. The autistic is proposed to become trapped in a limited, but highly secure internal world with minimal extremes and surprises. We present the key studies that support this theory of autism, show how this theory can better explain past findings, and how it could resolve apparently conflicting data and interpretations. The theory also makes further predictions from the molecular to the behavioral levels, provides a treatment strategy and presents its own falsifying hypothesis.

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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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DSM-5 Autism Emperors' Ridiculous Assumption

"The fifth edition of the diagnostic and statistical manual of mental disorders (DSM-5) (APA in diagnostic and statistical manual of mental disorders, Author, Washington, 2013) has decided to merge the subtypes of pervasive developmental disorders into a single category of autism spectrum disorder (ASD) on the assumption that they cannot be reliably differentiated from one another."

LY Tsai, M. Ghaziuddin (JADD 2013) DSM-5 ASD Moves Forward into the Past

I agree with the observations of Tsai, Ghazuiddin and Dr. Waterhouse.  I have none of their outstanding academic and research  qualifications.  I am a humble Canadian labour lawyer, the father of a severely autistic 17 year old son, with "profound developmental delays" who has, like 25% of those with severe autism and intellectual disability also suffered from serious grand mal seizures.  My 17  year old son, who I love dearly, whose joyful visage adorns the sides of this blog,  reads at a Dr. Seuss level.  He is not autistic in the manner of a Michelle Dawson who appeared at the Supreme Court of Canada to argue as an "autistic" against the parents from British Columbia who were seeking Medicare coverage for evidence based ABA treatment for their autistic children.  My son is not autistic in the manner of an Ari Ne'eman who graduated from university, founded a corporate entity called ASAN, participates as a member of the IACC and lectures journalists on what it means to be autistic in a meeting of the Washington press corps.

I don't have the academic autism credentials of the distinguished names mentioned above.  I do have credentials as an autism father who has loved and cared for a severely autistic son for 17+ years. I have credentials as an autism advocate who, in my home Canadian province of New Brunswick, has advocated with other parents with success for early evidence based intervention for autistic children, autism trained Teacher Assistants and for the continuation of a tertiary care autism center for NB children and youth when threatened with closure by bureaucratic decree.  In my continuing advocacy for autistic adults I have visited psychiatric hospitals where they have lived in the absence of a residential care system to meet their needs. I have conducted many meetings with other autism parents as the Autism Society New Brunswick and met many autistic children and adults from my son's severe end of the spectrum to the very high functioning "Aspergers" end. 

What my experience, what my daily life for 17+ years has always told me, is that there are vastly different realities facing those on the autism spectrum. There is no evidence justifying the lumping together of these hugely different realities under the label Autism Spectrum Disorder.  To borrow the words of Dr. Waterhouse autism to any reasonably informed observer is marked by heterogeneity and complexity.

As Tsai and Ghazuddin have said the DSM-5 ASD is counter to evidence and is based on the assumption that "they cannot be reliably differentiated from one another."  

That assumption is not just wrong. It is in the humble opinion of this informed autism father a ridiculously false assumption.

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Autism 2012: Disaster for the Autism Spectrum's Intellectually Disabled

"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:"

Autism annual reviews have been published by a number of sources most of  which ignored or mis-characterized the most important autism event of 2012.  The most important event by far and the one with the most negative implications for those who actually suffer from autism symptoms was the APA approval, on  Saturday, December 1, just before the holiday season, of the DSM5 as it is now written including the new Autism Spectrum Disorder.  The new ASD will preclude future autism diagnoses for those most severely affected by autism symptoms: those with moderate to severe intellectual disability. 

I have written many times about the express targeting for exclusion of those with intellectual disabilities.   I have been virtually alone in my criticism of this exclusion but I stand by my objection to that exclusion.  It is reprehensible.  It helps  insurance providers and governments that seek to reduce provision of autism treatment and benefits.  It helps those academics and researchers who are building careers researching every trivial idea they find fascinating without helping or bringing anyone with an autism disorder any closer to treatment or cure of the symptoms which in fact restrict their ability to function in the real world.  They are now free to conduct autism research without the need to include difficult to work with intellectually disabled, severely autistic children and adults among their subjects. It helps those persons with High Functioning Autism and Aspergers, their parents and other loved ones, who feel stigmatized by association with low functioning, intellectually disabled autistic children and adults.

Intellectual opposition to the direction the DSM5 is taking autism did arise in 2012 in Rethinking Autism: Variation and Complexity by Professor Lynn Waterhouse. She has articulated in a very comprehensive analysis, backed by learned authorities on every point, the fundamental problems with the new streamlined, simplified version of autism.  The title summarizes her arguments succinctly: autism is in essence a group of symptoms characterized by variation, heterogeneity and complexity.  The unified, simplified DSM5 ASD ignores that heterogeneity.  Every parent, academic and clinician who has repeated Stephen Shore's caution,  now a cliche, "if you've met one person with autism, you've met one person with autism" knows that autism is heterogenous, varied and complex.  The DSM5 however, contrary to all research and real life experience, pretends otherwise.  The DSM5 ASD is a false step, a road block to the understanding of autism disorders, autism symptoms.  Debates over whether autism is increasing, and what factors are involved with causing autism will be muddied again for another generation by the redefinition of autism.

The moderately and severely intellectually disabled who otherwise display the social communication and restrictive, repetitive criteria of the DSM5's New Autism Spectrum Disorder, will not be included in the new autism diagnostic era. They will be relegated to the Intellectual Disability group which will receive very little research attention or dedication of resources.  After all it will be deemed wiser to concentrate resources, including treatment and cure research resources, on those for whom successful results are more likely .... just as the distinguished, open minded, intellectually conflict free and oh so compassionate members of the DSM5 autism committee have done in their pre-Christmas gift to the intellectually disabled, severely affected members of the pre-DSM5 autism spectrum.  

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DSM5 Autism Do-Over Raises Concerns Down Under, Yeah?

Concerns have been raised in Australia over the DSM-5 Autism Do-Over, the new Autism Spectrum Disorder.  The fears echo those held by many in North America where studies have suggested a loss of autism diagnoses under the new DSM-5 diagostic criteria for autism with a possible loss of funding for autism treatment and services.

ABC (Australian Broadcasting Corporation) News reports the concerns expressed by Autism Awareness Australia:

"Vicki Gibbs from Autism Spectrum Australia's diagnostic service said Australian research has found a significant number of autistic children would fail to meet the new criteria. "What our study found was of the 120-odd children that we assessed, about 23 per cent of those children who would have got a diagnosis under the existing DSM 4, we would not have been able to give a diagnosis under DSM 5, just because they didn't have enough of the symptoms," the clinical psychologist said."

As the parent of a 16 year old son with severe autistic disorder I learned long ago that unanticipated changes can have immediate repercussions for my son.  Meltdowns have been prompted by unanticipated and, sometimes, unnecessary changes in my son's routines and expectations.

Change itself can be very disruptive. It does not appear to be a lesson learned by the autism experts on the DSM5 committees ... yeah?

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Rethinking Autism: One Disorder or Many?

The following reviews and book description are from  Amazon and provide a glimpse into Rethinking Autism: Variation and Complexity by Lynn Waterhouse a book scheduled for release by Amazon on October 15, 2012.

Rethinking Autism promises to be a paradigm shattering approach to understanding what is now commonly called Autism Spectrum Disorder.  With the APA's DSM-5 committee about to jam the existing recognized pervasive developmental disorders into one spectrum Lynn Waterhouse's book looks like it may present a very timely challenge to the  thinking of the American Psychiatric Association's DSM-5 team:

"A seminal book forcing a much-needed change in the way in which we think about autism.  Impressively well-researched and well-argued.  A 'must-read' for all autism researchers."

--Prof. Jill Boucher, City University, London, UK

"For too long, clinicians and researchers have treated autism as a distinct syndrome. Waterhouse challenges this view with a scholarly review of evidence. Yes, there are children with pervasive developmental difficulties, but no, they are not a homogenous group - either in terms of symptoms, or underlying causes."

--Prof. Dorothy Bishop, University of Oxford, UK, Review of Rethinking Autism Lynn Waterhouse, Amazon.ca 

Book Description

The media, scientific researchers, and the Diagnostic and Statistical Manual all refer to "autism" as if it were a single disorder or a single disorder over a spectrum. However, autism is unlike any single disorder in a variety of ways. No single brain deficit is found to cause it, no single drug is found to affect it, and no single cause or cure has been found despite tremendous research efforts to find same.Rethinking Autism reviews the scientific research on causes, symptomology, course, and treatment done to date.and draws the potentially shocking conclusion that "autism" does not exist as a single disorder. The conglomeration of symptoms exists, but like fever, those symptoms aren't a disease in themselves, but rather a result of some other cause(s). Only by ceasing to think of autism as a single disorder can we ever advance research to more accurately parse why these symptoms occur and what the different and varied causes may be. 

- Autism is a massive worldwide problem with increasing prevalence rates, now thought to be as high as 1 in 38 children (Korea) and 1 in 100 children (CDC- US) 

- Autism is the 3rd most common developmental disability; 400,000 people in the United States alone have autism 

-Autism affects the entire brain, including communication, social behavior, and reasoning and is lifelong 

- There is no known cause and no cure 

-Funding for autism research quadrupled from 1995 to 2000 up to $45 million, and the Interagency Autism Coordinating Committee has recommended $1 billion funding from 2010-2015

I admit that, as the father of a 16 year old son with severe Autistic Disorder and profound developmental delays, I am predisposed towards Ms Waterhouse's approach to understanding autism disorders even though it does in itself appear to be based purely on genetic models of autism. As a father who has advocated for evidence based autism services in Canada I am no fan of the very high functioning autistics who oppose parents whose sole aim is to help their own disabled severely autistic children. I do not see the very high functioning autistic self advocates who purport to speak for all persons with autism disorders as sharing similar conditions or disorders with my severely autistic son. 

I have no illusions about whether Ms Waterhouse's perspective will be accepted  and I predict right now without hesitation that it will not be embraced by the academic, medical, pyschiatric and psychological communities that shape our understanding of autism or autism(s). Several years ago I was enthusiastic about what appeared to be a paradigm shift from the "it's gotta be genetic" view of autism causation to a gene-environment model.  It has happened to some extent but  authorities are still timid about embracing it and still funnel massive amounts of research dollars in support of  genetic research while neglecting to develop a strategic plan for researching environmental factors as recommended by a group of  researchers led by Philip Landrigan and by the efforts of Irva Hertz-Picciotto and her colleagues.

While Rethinking Autism emphasizes variation and complexity of autism disorders the DSM-5 has moved in the opposite direction to combine the various recognized pervasive developmental disorders into one Autism Spectrum Disorder which could more accurately be described as Asperger's Spectrum Disorder. A Twitter tweet by Dr. Jon Brock brought the impending Rethinking Autism book to my attention. After I made an online comment about the book I was alerted to an existing paper by Lynn Waterhouse, Autism Overflows: Increasing Prevalence and Proliferating Theories, which appears to set the stage for her forthcoming book.

I have only just read the Autism Overflows paper once and, as a humble autism dad, I do not pretend that my understanding of the paper is "complete".  Some elements of the paper seem very straightforward and readily digestible though and appear to me to run contrary to the DSM-5 direction:

"Forty-five years of autism research has not produced a reasonable or progressing standard causal theory of autism. The myriad of competing theories of autism, while supported by evidence are, nonetheless, ad hockery. As Happé et al. (2006) title proclaimed “It is time to start giving up on a single explanation for autism” (p. 1218). 

Conclusion: The Center Will Not Hold 

 Rather than continue to construct theories that try to explain all the variation in autism, there should be a paradigm shift accepting that all the phenotypic and genotypic variation in autism cannot be encompassed by any single theory. De facto, if autism is caused by such a myriad of neural and other systemic deficits in development, there must be phenotypic and genotypic subgroups that have not yet been discovered.

......

Judging from many specific findings like those of Kelley et al. (2008) and the review conclusions of Amaral et al. (2008), Nicolson and Szatmari (2003), and Stanfield et al. (2008), it is improbable that two or three phenotypes (Folstein, 2006; Happé et al. 2006) will be sufficient to accommodate the collocation of deficits now included in autism and ASD. This leaves the field in a definitional quandary: If there is no autism, how can populations with the current diagnostic deficits be defined? 

 The social explosion of awareness of autism and the increasing prevalence of autism create a strong social force against disbanding the diagnostic category. However, public pressure increases the need to generate productive and predictive models, and this cannot be done while research and theory remain focused on explaining autism as a monolith.

“The only genome-wide feature specific to humans so far detected is the acceleration of evolution of genes expressed in the brain” (p. 700). Given the thousands of brain-expressed genes and genes for brain development that influence aspects of social interaction skill and flexible behavior in changing contexts, and given findings to date for the genetic basis of autism (Grigorenko et al. 2008; Morrow et al. 2008; Zhao et al. 2007), it is not reasonable to assume that in the future a gene or set of genes will be found to provide a unifying causal explanation for autism. 

Autism research should start over with a new hard core assumption that autism consists of more subphenotypes and subgenotypes than we have yet been able to hypothesize. We could begin with a provisional list of as many deficits as have been discovered in association with autism. Work could then proceed, via non-statistical analysis of complete genotype and phenotype studies of individual variation, to form groups. Exploring individual variation patterns while resisting the pressure to identify every study finding as “the cause of autism” might help move the field toward a progressive and productive splintering of the monolith."

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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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Autism Research Bias and the DSM-5 Autism Do-Over Exclusion of Those with Intellectual Disabilities

Why has the APA decided that the DSM-5 Autism Spectrum Disorder should eliminate or substantially reduce the numbers of persons with ASD who are intellectually disabled?   The removal from an ASD diagnosis of persons with ID will be accomplished by the express wording of Mandatory Criterion A of the DSM-5's New Autism Spectrum Disorder which requires "A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays.."  Where the numbers of persons with intellectual disability constitute the vast majority of persons with Autistic Disorder under the DSM-IV they will now be removed from the autism spectrum under the DSM-5 Autism Do-Over which will now define autism largely in terms of the current Asperger's definition of social communication and repetitive behavior deficits.  The DSM-5 Autism Spectrum Diosrder would be more accurately titled Aspergers Spectrum Disorder.  But why the substitution of Asperger's for Autism in the DSM-5 Autism Do-Over?

The answer may be found in the convenience of autism researchers, clinicians and pharmaceutical manufacturers.  It is easier to treat, and even research, high functioning autism and Aspergers than to deal with patients and subjects with classic, severe autism and intellectual disability.  Interviewed for 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:

"The DSM-5 modifications will be great for drug development, as there will be greater standardization in clinical trials, said Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine. With hardened criteria, there will be better, clearer studies that are easier to interpret, he said. DSM-5 changes will be a positive for research as the improved diagnostic clarity would ensure proper enrollment criteria, Ring agreed.


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.


To avoid a bias in developing treatments only for higher-functioning patients, it would be especially advantageous to target specific symptoms rather than a broad lump of ASD so that specific interventions can target symptoms for a particular severity, for example stereotypic motor movements, Elliott said."

I have commented several times about what I perceived as high functioning bias in autism research.  Dr. Erickson confirms my perception as Dr. Catherine Lord has done previously 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."


A problem with that explanation  is that the research on which the DSM-5 autism spectrum disorder is based is biased in favor of high functioning autistic and Asperger's subject participation.  The existing research as admitted by Dr. Lord and Dr. Erickson tends to exclude the severely challenged, intellectually disabled population.  The new DSM-5 reflects that research bias by expressly excluding the intellectually disabled from a DSM-5 era Autism Spectrum Disorder diagnosis.

The DSM-5 Autism Do-Over will exclude the intellectually disabled to make life easier for autism researchers, clinicians and pharmaceutical manufacturers.  There is no compelling reason to expressly exclude the intellectually disabled from the ASD except for the convenience of these groups.

There is no legitimate research basis for removing the intellectually disabled from an autism spectrum disorder diagnosis.  There is only bias ... bias against the intellectually disabled. 

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Autism, Intellectual Disability & Environment: Children of Immigrants in Sweden At Greater Risk of Developing Autism with Intellectual Disability

Swedish Flag by Matti Mattila 

A major Swedish study offers uncomfortable news to the DSM-5 team trying to pretend there is no relationship between autism and the intellectual disability which affects the vast majority of those with classic Autistic Disorder. It will also be disconcerting  to those who devoutly believe that autism is 100% genetic. The study finds that children born of immigrants to Sweden had an increased risk of developing autism with intellectual disability. The study authors also conclude that autism is governed by environmental as well as genetic factors:

A major register study from the Swedish medical university Karolinska Institutet shows that children born to certain groups of immigrants in Sweden had an increased risk of developing autism with intellectual disability. The study includes all children in Stockholm County from 2001 to 2007, and brings the question of the heredity of autism to the fore.

"This is an intriguing discovery, in which we can see strong links between a certain kind of autism and the time of the mother's immigration to Sweden," says principal investigator Cecilia Magnusson, Associate Professor of epidemiology at Karolinska Institutet. "The study is important, as it shows that autism isn't governed only by genetic causes but by environmental factors too."

The study, which is published in the scientific periodical The British Journal of Psychiatry shows that children of immigrant parents, particularly from countries of low human development, are disproportionately likely to develop autism with intellectual disability, a connection that appears to be related to the timing of migration rather than complications in childbirth. Children, whose mothers migrated just before or during pregnancy, ran the highest risk of all.

"At this juncture we can but speculate about the causes, but our assumption is that environmental factors impacting on the developing fetus, such as stress, new dietary habits or infections, could lead to the development of autism with intellectual disability," says Dr Magnusson.

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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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Intellectual Disability and the DSM-5 Autism Do-Over: Catherine Lord Then (2003) and Now (2013)

Catherine Lord, and her highly influential views about autism and intellectual disability seem to have changed a bit since the 2003 article published below and the DSM-5 Autism Do-Over which will be published in 2013.  For those who quibble over the reference to 2013 as being "now" they should know that Dr. Lord and the DSM-5 subcommittee have no intention of changing any of the wording of the DSM-5 Autism Do-Over which will take effect in 2013. For the intellectually disabled  the future is now, they are no longer part of the autism spectrum. 

As Dr. Lord has already confessed, the DSM-5 committee of which she is a member has already targeted the intellectually disabled for exclusion  from the DSM-5's New Autism Spectrum Disorder. That confession is also confirmed by the exclusion language in mandatory criterion A of the DSM-5 which excludes an autism diagnosis where the social communication deficits are accounted for by general developmental delay. The writing is on the DSM-5's purple wall.

If there is any change at all in the wording of the DSM-5 Autism Do-Over it will be at the higher functioning end and will favor inclusion of more persons who are least affected by an "autism" disorder.  Persons with high functioning autism and Aspergers have powerful allies in the major mainstream media institutions; allies like Amy Harmon of the New York Times.  For the MSM and Hollywood autism is Aspergers. 

The intellectually disabled who comprise the vast majority of those with DSM-IV Autistic Disorder are never mentioned in those highly influential circles and the recent firestorm over exclusion from the DSM-5. The uproar is over the possible exclusion of the highest functioning persons with an ASD, persons who can work in rock bands, run successful businesses, graduate from university, cavort with New York media and New Jersey and Washington political figures and committees.

Dr. Catherine Lord and her DSM-5 committee will continue with their plans to separate intellectual disability completely from the autism spectrum as though there were no connection between the two.  But Dr. Lord did not always see the intellectually disabled as a lower caste to be excluded from the autism spectrum rooming house as illustrated in this 2003 journal article abstract:

Evidence for Latent Classes of IQ in Young Children With Autism Spectrum Disorder


Jeffrey Munson, Geraldine Dawson, Lindsey Sterling, Theodore Beauchaine, Andrew Zhou, Elizabeth Koehler, Catherine Lord, Sally Rogers, Marian Sigmand, Annette Estese, and Robert Abbotte

Autism is currently viewed as a spectrum condition that includes strikingly different severity levels; IQ is consistently described as one of the primary aspects of the heterogeneity in autism. To investigate the possibility of more than one distinct subtype of autism based on IQ, both latent class analysis and taxometrics methods were used to classify Mullen IQs in a sample of 456 children with autism spectrum disorder. We found evidence for multiple IQ-based subgroups using both methods. Groups differed in level of intellectual functioning and patterns of verbal versus nonverbal ability. Results support the notion of distinct subtypes of autism that differ in severity of intellectual ability, patterns of cognitive strengths and weaknesses, and severity of autism symptoms.


In 2003 Dr. Catherine Lord (and Dr. Geraldine Dawson of Autism Speaks) saw the intellectual ability patterns as a significant basis for distinguishing subtypes of autism that differ in severity.  Apparently her views have changed ... dramatically ... since then.  To the great detriment of the vast majority of those with Autistic Disorder and intellectual disabilities.

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What Does Autism Awareness Mean As The Great DSM-5 Autism Do-Over Approaches?

What exactly is Autism Awareness and what does it accomplish?

Can anyone, Autism Speaks, or any other autism organization, say with a straight face that they are promoting autism awareness when the official criteria for determining what autism is, or is not, changes every 15-20 years?  Can anyone say what autism is when the vast majority (CDC expert Dr. Marshalynn Yeargin-Allsopp) of those with autistic disorder, those with intellectual disabilities, are rendered a minority, albeit a large minority at 41-44% (CDC surveys) , with the publication of the DSM-IV and when that large minority are removed from the autism "spectrum" entirely with the publication of the DSM-5?

Can anyone pretend to be talking about the same autism when some are talking about severely impaired and challenged children and adults who lack any significant communication skills, suffer epileptic seizures and engage in dangerous Self Injurious Behavior while others, especially mainstream media like the NYT,  bemoan the challenges faced by very shy high functioning persons who function well in rock bands, businesses and quasi-governmental organizations but heaven forbid find, not unlike much of humanity, that personal intimacy with a person to whom one is attracted can be an awkward, learning experience during adolescence?

Can anyone stand up in good faith in this day and age and say that autism is an entirely genetic disorder when in fact not all identical twins both have autism when one does? Or when researchers find multitudes of genetic bases for autism but no single genetic characteristic of autism? Even after the overwhelming majority of autism research dollars have been funneled for years into a bottomless pit of genetic autism research?

And how about the French psychoanalysts who in 2011-2012 are promoting nonsensical, non evidence based, non reality based autism causation theories, including the "refrigerator mothers" theory of autism causation,  a dangerous harmful work of fiction that never did have an evidence basis? And they have the unmitigated audacity to sue Sophie Robert for exposing their incompetent, archaic nonsense to the world?


Unfortunately the gross autism incompetence of many in the French psychoanalytic profession is about the only thing that remains clear in the world of autism awareness. The very definition of autism has now become contentious. The impact of new diagnostic definitions on epidemiological based autism research can only be imagined but, if past is prologue, will not be helpful in increasing our knowledge of autism causes. 


I do not mean to discourage anyone from engaging in raising autism awareness.  But in this time of the great DSM-5 Autism Do-Over please be clear about what you mean when you say ... autism. 

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DSM-5 Autism: Globe & Mail Ignores Invisible Intellectually Disabled Autistics, Dr. Yeargin-Allsopp's Vast Majority

Canada's Globe & Mail is late to the discussion, once again, of major autism issues. This time, Parents of autistic kids fear diagnostic changes will mean reduced services, the Globe is parroting the concerns of the major US corporate media over the possible impact of the DSM-5's New Autism Spectrum Disorder on persons with Asperger's and High Functioning Autism.  Like the US corporate media the Globe simply ignores the probable impact, on intellectually disabled autistic persons of the express exclusionary language of Mandatory Criterion A of the New Autism Spectrum Disorder.

Mandatory Criterion A of the New Autism Spectrum Disorder states:


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:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people.

The highlighted expression will exclude some from an autistm diagnosis where Criterion A can be accounted for by general development delay.  General developmental delay is not a separate category in the DSM-5 at least not under that title. It is found under the diagnosis  Intellectual Developmental Disorder (IDD):

A 00 Intellectual Developmental Disorder

• Proposed  Revision
• Rationale
• Severity
• DSM-IV

Updated July 5, 2011

Intellectual Developmental Disorder is a disorder that includes both a current intellectual deficit and a deficit in adaptive functioning with onset during the developmental period. All three of the following criteria must be met.

A.         Intellectual Developmental Disorder is characterized by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience.Intellectual Developmental Disorder requires a current intellectual deficit of approximately 2 or more standard deviations in Intelligence Quotient (IQ) below the population mean for a person’s age and cultural group, which is typically an IQ score of approximately 70 or below, measured on an individualized, standardized, culturally appropriate, psychometrically sound test. 

            AND

B.         The deficits in general mental abilities impair functioning in comparison to a person’s age and cultural group by limiting and restricting participation and performance in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings. The limitations result in the need for ongoing support at school, work, or independent life. Thus, Intellectual Developmental Disorder also requires a significant impairment in adaptive functioning. Typically, adaptive behavior is measured using individualized, standardized, culturally appropriate, psychometrically sound tests. 

            AND

C.         Onset during the developmental period.  (Underlined dark bold highlighting added - HLD) 

Impairment in communication and social participation will support a diagnosis of

Intellectual Developmental Disorder. A person with Intellectual Developmental

Disorder and deficits in social participation and communication will by definition have those deficits accounted for by his/her IDD and will be excluded from an autism diagnosis by operation of the exclusionary wording in Mandatory Criterion A of the DSM-5 Autism Spectrum Disorder. 

None of the spokespersons for the DSM-5 Neurodevelopmental Workgroup Committee have explained how these two provisions can exist in the DSM-5 without excluding  intellectually disabled persons from an Autism Spectrum Disorder diagnosis.  To the contrary Dr. Catherine Lord has already confessed a clear intent on the committee's part to exclude from an autism diagnosis those with intellectual disabilities. 

The Globe & Mail, in fairness, is not a frequent reporting source on autism disorders.  It is probably just following the corporate media trend in the US ... ignoring those described by CDC autism expert Dr. Marshalyn Yeargin-Allsopp as the vast majority of those diagnosed with DSM-IV Autistic Disorder (AD) ... those with AD and intellectual disabilities.

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