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

The above reference to, and quote of, Dr. Catherine's Lord about the DSM-5 committee's intent to exclude intellectually disabled from further autism diagnosis was important journalism by Amy Harmon even if it was simply an inadvertent by product of her exploration of HFA and Asperger's in the DSM-5's New Autism Spectrum Disorder.  Ms Harmon has shown considerable interest in HFA and Asperger`s while largely ignoring those severely affected by autism disorders.  To here credit her article about worried observers relates primarily to those high functioning groups but did cough up the above confession by Dr. Lord.  Ms Harmon consistent with her slant towards covering High Functioning Autism  then moved on and glossed over the admission by Dr. Lord.  In Amy Harmon World as in Dr. Catherine Lord`s DSM-5 the intellectually disabled just don`t count and will be excluded from the Brave New Autism Spectrum Disorder.

To my knowledge I am one of the first, and few, persons to comment on the intentional exclusion of the intellectually disabled from the autism spectrum in the DSM-5; despite their historical presence on the "spectrum"` as a vast majority of those with classic Autistic Disorder. One person who pursued my concerns was Lisa Jo Rudy, then of the About.com autism site, who obtained the following information from Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group:

"My Question for Dr. King


There seems to be a desire to remove people with "Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays" from the ASD category. Does this mean that a child with Mental Retardation (also called Intellectual Delays) no longer qualify for an Autism Spectrum diagnosis? Would that person wind up dually diagnosed with Intellectual Development Disorder and social communication disorder rather than with an ASD diagnosis?


His Response


There is no explicit desire , however, by creating more specificity we believe that people may be given diagnoses that better capture their individual conditions. The qualifier above about general developmental delays ensures that the social communication deficits are more specific, and also potentially allows for earlier diagnosis if appropriate.


Just as typically developing infants and toddlers are able to engage in very rich social communication and interaction across contexts, appropriate to their developmental level, so too most individuals with intellectual delays or disabilities are also able to communicate. On the other hand, significant deficits in social communication in toddlers may suggest the presence of autism. What the criterion above is meant to ensure is that clinicians take into account what is typical in terms of social communication abilities at a given age or developmental level, and not assume, for example, that a lack of social perception in a teenager with intellectual disability not automatically suggest the presence of autism. As is currently the case, some individuals with Down Syndrome may also meet criteria for autism; but most will not."

When I read Dr. King`s reply to Lisa`s question I was skeptical. I had difficulty rationalizing his answer with the express wording of mandatory criterion A of the DSM-5`s new Autism Spectrum Disorder which requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Dr. King stated that it was not the DSM-5 committees`s intent that children with mental retardation (now to be known as Intellectual Developmental Disorder) would be disqualified from receiving an Autism Spectrum Disorder diagnosis.  Dr. Catherine Lord`s appears to say exactly the opposite.  Dr. Catherine Lord takes issue with the Volkmar data base and study that has prompted the current fears over exclusion of persons with HFA and Asperger`s from a DSM-5 Autism Spectrum Disorder diagnosis.

Dr. Lord is undoubtedly correct and Amy Harmon and the New York Times need not worry.  The DSM-5 targets for exclusion from the new ASD diagnoses are not those with HFA and Asperger`s.  Those who will be excluded are the invisible autistics who are not featured in the NYT or in Hollywood movies.

I have a son with a DSM-IV Autistic Disorder diagnosis who is also assessed with profound developmental "delays".  I have expressed my concerns on several occasions about the terms of category A of the new Autism Spectrum Disorder in the DSM5:

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: [emphasis added -HLD]

My concern has been that people like my son who are currently considered autistic with intellectual disabilities will lose the autism diagnosis with serious repercussions both in receipt of services, and in research and understanding affecting their  disabilities.

With the newest round of "beautiful mind", autism is an advantage not a disorder, activism by autism "researchers" Mottron and Dawson I have wondered again whether the DSM5's new Autism Spectrum Disorder could result in loss of autism diagnoses for several prominent "autism" personalities.  By autism I am referring to the tendency today to refer to PDD-NOS and Asperger's Disorder as also constituting autism along with Autistic Disorder.  Contrary to the activist ideologies and beliefs of Mottron and Dawson persons with diagnoses from any  of these categories will clearly and expressly require impairments in daily functioning in order to qualify for an Autism Spectrum Disorder diagnosis under the DSM5:

Even without the clear language of the DSM5 requiring impairment of everyday functioning, further divided by levels of severity of impairment, it has always been difficult for me to understand how or why some very high functioning autism personalities ever received a mental health disorder diagnosis  under the DSM-IV when they are obviously very high functioning.  

Autism personalities, including Michelle Dawson, Ari Ne'eman and John Elder Robison have all realized considerable success in life, in university, in self owned business activities, in challenging work environments like Canada Post Corporation, in making legal representations to administrative tribunals and the Supreme Court of Canada, in acting as researchers and as activists promoting their views of autism disorders before government committees. Some have married and raised children while others have maintained professional relationships lasting several years. It has never been at all clear to me why any of them would want a label which reflects a mental disorder under the DSM-IV given their great successes in meeting life's challenges.

With great regularity these autism personalities also appear in various major media productions advocating  their perspectives on what it means to be an "autistic" and, in Dawson's case, advocating against government funding of ABA treatment for autistic children, other people's autistic children.   When the public turns on their television, reads their daily newspapers or browse the internet for news of autism they do not see, with any regularity, the many persons with autism disorders engaging in serious self injurious behavior, wandering from their homes and schools, and into dangerous traffic and waters.  The public does not see the many persons with autism living in group homes, hospitals and psych wards. No, the public sees Michelle Dawson, Ari Ne'eman, J E Robison and other very high functioning "autistics" and they see them over and over and over again. 

The DSM5's new Autism Spectrum Disorder label is actually misleading in so far as the condition could now more accurately be called Asperger's Spectrum Disorder. But it does expressly require, as a mandatory condition for receiving an ASD diagnosis, that Symptoms together limit and impair everyday functioning.

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.  

If you authored or coauthored several journal articles a year over many years, involving high functioning, highly intelligent persons with autism and surrounded yourself with very intelligent, high functioning autistic researchers would they influence your perception of autism? In the case of psychiatrist, and anti-autism cure, anti-ABA activist, Dr. Laurent Mottron, who has published many journal articles involving high functioning autism participants, the answer is yes.   

Dr. Motton has acknowledged repeatedly that his perception of autism has been influenced by his professional relationship with the very intelligent, high functioning autistic Michelle Dawson. In his latest comment in the journal Nature Dr. Mottron states that the half dozen autistic persons who form part of his research team are "typical autistics".

As the father of a son who is not one of Mottron's "typical autistics", who is in fact one of the approximately 70% of persons with Autistic Disorder (not autism generally) who also have intellectual disabilities and is severely affected in his understanding of the world and his daily functioning skills I am left shaking my head once again at Dr. Mottron's characterizations of autism. Once again, prominent media headlines around the world are screaming the Mottron mantra that autism is an "advantage". 

Dr. Mottron acknowledges that many with autism are considered intellectually disabled although he expresses his doubts about the figures, saying he doesn't believe them. His vague caveats about the serious challenges faced by so many with autism are buried in the article and do not form part of the autism is an advantage headlines.  

Maybe Dr. Mottron should start hiring some of the many persons with Autistic Disorder and intellectual disabilities, including some of the adults living in institutions including psychiatric hospitals. Maybe he should get out of his lab and join one of the search and rescue teams that are regularly called out to find autistic children who wander away from home and school.  Perhaps he could join the tertiary care team at the Stan Cassidy Center here in Fredericton and help the autistic children and youth with severe behaviour challenges that they treat.  The caseload the Stan Cassidy handles is so overwhelming that the administration had planned  a few years ago to disband the autism team because the workload was so great it was threatening its ability to provide other services offered by the center to persons with neurological injuries.  The autism team was continued after public opposition led by parents of children with autism, parents who have to deal 24/7 with the daily realities of their children's autism disorders.

I am surprised Dr. Mottron is not fighting the American Psychiatric Association's proposal to combine the various autism disorders into one new Autism Spectrum Disorder in the DSM5, the proposed new version of the APA's Diagnostic and Statistical Manual of Mental Disorders.  After all "typical" autism for Dr. Mottron is not a disorder, it is an advantage. 

It is common place today to refer to autism(s), plural, rather than autism, singular.  So why is the DSM5 combing the autisms into one Autism Spectrum Disorder? It is common in both professional and parent based discussions of autism to encounter comments like "if you've met one person with autism, you've met one person with autism".  So why pretend that these persons with widely varying challenges and deficits represent one diagnostic grouping?

My son is severely autistic and profoundly "developmentally delayed".  He has nothing in common with the persons with high functioning autism and Aspergers who write books, conduct research, make representations to the Supreme Court of Canada to oppose the only recognized evidence based treatment for autistic children, run successful businesses, get married, have children and drive automobiles.  

These very successful high functioning "free ranging Aspergians" and autistic persons  have very little in common with the "vast majority" of persons with Autistic Disorder and intellectual disability.  How does combining such different and diverse conditions under one umbrella help any of those involved, particularly those who are most severely affected by autism disorders. 

Very little media or research attention is now paid to those severely affected by the current Autistic Disorder.  Under the DSM5's New Autism Spectrum Disorder those most severely affected will likely disappear from the public and professional  radar screens altogether.

Why combine such different conditions under one  diagnostic label?  How does this help any of those who will carry the new label?

The author of Autism and Oughtisms has posted a guest comment on the site Teaching the Teachers, Educating an Autistic Child is an Opportunity,  in which, like many other parents and professionals, she includes a commentary which distances autism disorders from intellectual disability:

What is severe autism?  Kim Oakley asks the question rhetorically before answering it in Silent Alarm. I strongly recommend anyone who wants to know what severe autism is read this latest comment by someone who has dealt with severe autism first hand, someone who knows what she is talking about:

Silent Alarm is exactly what the title says. Read it if you want to know the truth about severe autism.  Or read some mainstream media pap about the joy of autism if you don't want to know the truth. Better yet just sit back and wait until the DSM-5 pushes the severely autistic off the spectrum completely and remodels the autism spectrum in the image of those who are anything but severely autistic.

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

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

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

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

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

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

July 17 2011

American Psychiatric Association

Dear NDD Work Group Members

I am the father of a 15 year old son diagnosed at age 2 with Autistic Disorder and assessed with profound developmental delays conditions which severely restrict his everyday functioning. He requires, and will require, 24/7 adult supervision. Since his diagnosis 13 years ago I have actively advocated here in New Brunswick, Canada for government funding of evidence based early intervention and autism specific training of education assistants and resource teachers who work with autistic students. With other parents we have enjoyed some success in  these areas although we have had much less success in advocating for adequate adult care and treatment facilities for autistic adults. Throughout our efforts we were guided, and to the extent that we succeeded, we did so because of the leadership of American autism researchers such as Dr. O. Ivar Lovaas and others who established the evidence basis for the effectiveness of applied behavior analysis as an autism therapy. Throughout this time from 1998 the DSM definition of Autistic Disorder and the other Pervasive Developmental Disorders, the latter of which has become identified in popular usage and in research as the Autism Spectrum,  was constant. Now the entire category for the "Autism Spectrum" is formally being merged together in the DSM-5  into one disorder divided only by the extent to which daily functioning levels are impaired by the newly defined ASD. I have two primary concerns about this new Autism Spectrum Disorder as it goes through substantive change at both the "high functioning" and "low functioning" end of the "autism spectrum".

Although it is a far from being a unanimously held position,it has been often mentioned in discussion of the startling increases in rates of autism diagnoses that the increases are accounted for entirely by the definition changes of autism in the DSM-IV, even though that occurred some 17 years ago, and increased social awareness. It seems entirely predictable that a newly changed definition will also confound our understanding of real autism prevalence. 

As the father of a son who is severely affected by Autistic Disorder and who is "profoundly developmentally delayed" I am most concerned with the language of the DSM5's new  A 09 Autism Spectrum Disorder which appears to exclude those, or many of those, with intellectual disabilities from an Autism Spectrum Disorder diagnosis. The proposed Autism Spectrum Disorder definition stipulates that criteria A,B,C and D must all be met in order for an ASD diagnosis to be given. Criterion A states:

I am aware that  Ms Lisa Jo Rudy of About.com autism has communicated recently with Dr. Bryan King of the NDD work group on the issue of the possible  exclusion of intellectually disabled from autism diagnoses. Dr. King provided the following response:

I have written previously that persons who presently have autistic disorder or PDD-NOS and who are also intellectually disabled will be removed from the DSM-5's New Autism Spectrum Disorder. Whereas those with intellectual disability once constituted autism's vast majority as described by CDC autism expert Dr. Marshalyn Yeargin-Allsopp the 1994 addition of Asperger's Disorder reduced their numerical weight on the autism spectrum.  With the new DSM-5 wording has intentionally been added to the definition of autism to exclude persons with intellectual disability from autism diagnoses. To be diagnosed with autism a person must meet all 4 criteria, A, B, C and D.  Criteria A requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays."  Now, an email exchange between Lisa Jo Rudy of About.com autism spectrum disorders and Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group confirms that the effect of the DSM's New ASD will be to exclude at least some persons with intellectual disability from an autism spectrum disorder diagnosis:

"My Question for Dr. King

The abstract for the study Disrupted Neural Synchronization in Toddlers with Autism,  reported in the current issue of Neuron, indicates that autism is tied to disrupted cortical synchronization, weak "functional connectivity" across two hemispheres of the brain:

Elizabeth Landau, a CNN Health writer/producer, mentions briefly the DSM-5's New Autism Spectrum Disorder, in a report on the organizational changes in the DSM-5 in Psychiatry 'bible' structure overhauled. Ms. Landau's discussion of changes in the DSM autism classification focuses exclusively on the impact the formal inclusion of Asperger's syndrome in Autistic Disorder will have on persons with Asperger's and parents of children with Asperger's.  No mention is made of the impact on that the changed definition of autistic disorder will have on the invisible autistics, those with actual autistic disorder, often low functioning, with intellectual disabilities, who are likely to live their adult lives in some level of residential or institutional care:

The newly reported autism study from South Korea with its "shocking" 1 in 38 autism rates figure doesn't make much sense. As reported in the Boston Globe:

"Roy Richard Grinker, a cultural anthropologist at George Washington University who worked on the study, said his own child with autism would probably function very well in such a system.

"Many kids with autism who are doing well can adapt to that highly structured situation," he said.

So, what does this finding mean for the United States?

Not necessarily much, according to several researchers who were not involved in the study. They praised the study generally, but pointed out flaws and assumptions that raise questions about whether there really are so many kids with autism in South Korea -- and by extension, in the United States.

Dr. Isaac S. Kohane, a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School, said he thinks the researchers may have taken their estimations too far by assuming that the rate of autism was the same among the nearly 700 families who declined followup assessments for their children, as among the ones who agreed. Wouldn’t a parent worried about a child be more likely to participate than one with no concerns? Without this assumption, Kohane says the researchers would have found roughly the same 1 in 100 prevalence we see in the United States.

Also, the definition of "autism" is so squishy today that it’s very hard to draw the line between autistic and non-autistic, he and other researchers said."

I am the father of a low functioning son with Autistic Disorder and I am not a fan of Roy Richard Grinker's involvement in defining autism and autism prevalence estimates. Grinker is the father of a high functioning child with Asperger's who favors the New Autism Spectrum Disorder definitions of the DSM-5.

I don't know why an anthropologist with strong biases was involved in an autism prevalence study in South Korea. I am not surprised though if a Grinker involved study found higher rates of autism ... particularly if the autistic persons found to have been missed were very high functioning.

Regardless, Dr. Kohane a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School has pointed out some serious flaws and assumptions involved in the study. Hopefully other serious professionals will examine the study and consider Dr. Kohane's comments before promoting the 1 in 38 study from Grinker and Co.

Will the DSM5 render meaningless all autism research to date? Will the DSM5 make it impossible to determine whether autism disorders are increasing or whether they are triggered or caused by environmental factors? The odds are good, given the difficulties in answering these questions resulting from the expansion of "autism" disorders in the DSM-IV and DSM-IV-TR to include Asperger's, that our understanding of autism prevalence and causation will be hampered substantially, and perhaps totally undermined, by yet another revision of the autism diagnostic categories in the DSM-5.  Even our understanding of what autism is will likely change, again, as a result of the DSM-5 revisions.  The intellectual disabilities that characterized the vast majority (Yeargin-Allsopp) of persons with classic autism will now be totally  replaced by the "socially quirky" model of autism.

Autism is now recognized globally with a World Autism Awareness Day each April 2.  While the day is used for autism fund raising, and celebrating the color blue,  it does little to actually raise awareness about the nature of autism, the numbers of persons with autism disorders, or the causes or treatment of autism.  Amongst the leading factors that contribute to our inability to qualitatively improve our understanding of autism disorders is the changing diagnostic definition of autism, increased social awareness and according to some at least, the widescale availability of autism treatments and education accommodations prompting diagnostic substitution by professionals, often prompted by parents.

Roy Richard Grinker is one of the best known advocates of the "don't worry, be happy" autism is not really increasing school of thought.  A 2007 copyright summary of Grinker's  book Unstrange Minds tells us all what was really happening with autism increases ...  in Grinker's opinion:

"Unstrange Minds shows how the shift in how we view and count autism is part of a set of broader shifts taking place in societies throughout the world. The growth of child psychiatry, the decline of psychoanalysis, the internet, the rise of international advocacy organizations, greater public sensitivity to children's educational problems, and changes in public policies have together changed the way autism is diagnosed and defined.


Societies are becoming more aware of children's behavioral and learning differences at earlier and earlier ages and more comfortable with diagnosis, medication, and psychiatric labels. Under the rubric of autism we now find a multitude of emotional and cognitive problems, problems that used to be given other diagnostic labels or that were even considered within the range of the normal. Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools in the United States, which first started using the category of autism during the 1991-1992 school year, are reporting it more often, developing ways to help children with autism, and directing parents to appropriate resources. Epidemiologists are also counting it better.


As a result, the statistics on autism that we have today - 1 in 166 -- are the most accurate we've ever had."

 The 2007 summary was written more than a dozen years after the last diagnostic definition change for autism disorders in the DSM manuals.  Yet the CDC recognized rates have moved upward twice since then to 1 in 150 and most recently to 1 in 110.  I am no cultural anthropologist but with a change from 1 in 166 to 1 in 110 it seems fool hardy to simply assume that the increased rates of approximately another 50% in 4 years are accounted for solely on the basis of diagnostic and social ascertainment factors. 

It is worthy to note that the IACC has acknowledged that the almost 100% dedication of autism funding toward genetic focused research has come at the cost of needed environmentally focused research, that the current thinking is that autism arises from the interaction of genetic and environmental factors (hardly a radical concept) and that the IACC view is that the social and diagnostic changes account for only approximately 50% of the dramatic increases in reported cases of autism disorders.

It seems that, finally the feel good, autism is 100% genetic and is not really increasing view of the Grinker (and Neurodiversity) model of autism is about to be seriously challenged and hopefully researched.  But wait a minute ... along comes another autism diagnostic revision in the DSM-5. 

PREDICTION: The DSM-5 autism diagnostic revisions will once again be used to cloud and confuse our understanding of autism rates and causation.  Many concerned parents and concerned professionals will be  Out of Luck in hoping for more understanding of autism.  Roy Richard Grinker, however, and those for whom exploration of potential environmental causes of autism are a nuisance, should be happy that Grinker's 100% genetic, stable model of autism will be protected from serious research challenges for decades to come.