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. 

High Functioning Autism fMRI Brain Scan Study Misrepresented to the Public

"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]

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

Yet another fMRI brain scan study, The neural basis of deictic shifting in linguistic perspective-taking in high-functioning autism,  has been published in which Low Functioning, Intellectually Disabled autistic subjects are, by design, excluded  in favor of subjects with High Functioning Autism. This study published in the journal "Brain" by researchers Marcel Just, Akiki Mizuno and their collaborators at CMU's Center for Cognitive Brain Imaging (CCBI) and described in a PR Newswire Release found that errors in choosing a self-referring pronoun (eg. "you" instead of "I") "reflect a disordered neural representation of the self, a function processed by at least two brain areas — one frontal and one posterior". 

As evidenced by the above quote from autism expert Catherine Lord low subjects with low functioning autism, which would include the 80% or persons with Autistic Disorder (DSM-IV) and intellectual disability, are often excluded from autism research.  That exclusion of low functioning, intellectually disabled subjects from  recent  fMRI "autism" brain scan  studies has been even more obvious.  

The Carnegie Mellon researchers should be commended for describing their conclusions, as their study title expressly states,  in terms of High Functioning Autism given that their study subjects were all high functioning autistic persons.   Unfortunately the press release, which identifies Carnegie Mellon as the source of its information,  is not as meticulous and generalizes the study to the entire autism spectrum  in its title and content, including quote from lead research Marcel Joust:

New CMU Brain Imaging Research Reveals Why Autistic Individuals Confuse Pronouns


...


The results revealed a significantly diminished synchronization in autism between a frontal area (the right anterior insula) and a posterior area (precuneus) during pronoun use in the autism group. The participants with autism also were slower and less accurate in their behavioral processing of the pronouns. In particular, the synchronization was lower in autistic participants' brains between the right anterior insula and precuneus when answering a question that contained the pronoun "you," querying something about the participant's view.


"Shifting from one pronoun to another, depending on who the speaker is, constitutes a challenge not just for children with autism but also for adults with high-functioning autism, particularly when referring to one's self," Just said. "The functional collaboration of two brain areas may play a critical role for perspective shifting by supporting an attention shift between oneself and others.


"Pronoun reversals also characterize an atypical understanding of the social world in autism. The ability to flexibly shift viewpoints is vital to social communication, so the autistic impairment affects not just language but social communication," Just added.


...


Ongoing research at the CCBI is assessing the white matter in detail, measuring its integrity and topology, trying to pinpoint the difference in the autistic brain's networks.


"This new understanding of what causes pronoun confusion in autism helps make sense of the larger problems of autism as well as the idiosyncrasies," Just said. "Moreover, it points to new types of therapies that may help rehab the white matter in autism."

Presenting the results of a study of High Functioning Autism subjects as representing all persons with autism, including the low functioning, intellectually disabled excluded from the study is  misrepresentation. It helps promote ignorance, both in the general public about the many intellectually disabled persons with low functioning autistic disorder identified by CDC autism expert Dr. Marshalynn Yeargin-Allsopp as autistic disorder's "vast majority". 

Autism Research: Which "Autism" Is Being Studied?

Neuron, Cover Page, 23 June, 2011 Volume 70, Issue 6

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:

" we show that disrupted synchronization is evident in the spontaneous cortical activity of naturally sleeping toddlers with autism, but not in toddlers with language delay or typical development. Toddlers with autism exhibited significantly weaker interhemispheric synchronization (i.e., weak “functional connectivity” across the two hemispheres) in putative language areas. The strength of synchronization was positively correlated with verbal ability and negatively correlated with autism severity, and it enabled identification of the majority of autistic toddlers (72%) with high accuracy (84%). Disrupted cortical synchronization, therefore, appears to be a notable characteristic of autism neurophysiology that is evident at very early stages of autism development."

The abstract does not explain what is meant by "autism" for the purpose of the reported study. The DSM-IV does not list "autism" as a specific diagnostic label or category. It does list autistic disorder. Common usage refers to all of the Pervasive Developmental Disorders, including Asperger's Disorder as variations of "autism". It is very common for very high functioning persons with Asperger's Disorder to tell the world about their experiences as autistic persons. Some such as Ari Ne'eman, a very intelligent, articulate individual with the social skills to participate in IACC and government meetings, likes to declare to the world,  that "WE", referring to persons with "autism",  do not want to be cured of their autism.  The DSM-5 will expressly merge the various "autism" disorders into one Autism Spectrum Disorder. 

It is not clear to me what is meant by the term "autism" in this abstract study.  Is it Autistic Disorder in the DSM-IV? Is it the PDD's in the DSM-IV all of which are now referred to as autism in common usage? Is it the Autism Spectrum Disorder of the DSM-5? Does the term autism as used in this study exclude persons with autism who are also intellectually disabled as the DSM-5 definition appears to do?

If anyone has read the full study report could they indicate how autism is being used in this study? Do the subject toddlers have Autistic Disorder in the DSM-IV, all of the PDD's of the DSM-IV, or Autism Spectrum Disorder from the DSM-5? Were potential subjects with "autism" and intellectual disability excluded?

The media coverage (1, 2, 3, 4) of this study also refers generically to "autism" without indicating which autism is being studied, a piece of information that I would think is fundamentally important to understanding the study's conclusions.

Autism and Intellectual Disability: More Denial, More Stigma, This Time In Alabama

In Children with Asperger's could lose diagnostic identity we see still more evidence, this time in Alabama,  of the stigma attached to the fact that the vast majority of persons with Autistic Disorder, unlike those with Aspergers Disorder diagnoses,  also have intellectual disabilities or cognitive impairments. Once again the story tells of concerns held by some that those with Aspergers will be stigmatized by being lumped in with those with Autistic Disorder in the DSM-5  New Autism Spectrum Disorder. In expressing these concerns the subjects interviewed contribute to the stigmatization of those with Intellectual Disability generally and specifically to the many persons with Autistic Disorder and Intellectual Disability:

"It's difficult to say where Asperger's ends and autism begins," Mulvihill said.


That difficulty - and the stigma attached to autism - is partly why some adults with Asperger's are not happy about the proposed change in the DSM, Crane said. While those individuals on the high-functioning end of the autism spectrum might show only slight symptoms, those on the other end of the spectrum are profoundly affected by the disorder.


Being classified as autistic can make it even more difficult for high-functioning individuals to develop relationships with their peers.


Crane said despite their various challenges, autistic children are highly intelligent.


"These kids are definitely the scientists of tomorrow," said Crane, who established the Riley Center after her son was diagnosed with autism. "They're brilliant. That's why early intervention is so important."

The comments by Crane of the Riley Center are a perfect example of the denial that is so prevalent in any public discussion of Autistic Disorder. The main difference between Autistic Disorder and Aspergers is in the area of intellectual disability.  By definition in the current version of the DSM-IV a person with "autism" criteria AND Intellectual Disability will be excluded from an Asperger's Disorder (DSM-IV, Diagnostic Criteria for Asperger's Disorder  299.80)  diagnosis (as set out on the CDC web site):

"E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

I have written frequently on the refusal of so many parents, professionals and persons with very high functioning autism disorders to acknowedge the high rates of intellectual disability in persons diagnosed with Autistic Disorder as that disorder is currently diagnosed in the DSM-IV.  The 2006 Canadian Psychological  Association brief to a Canadian Senate committee examining autism stated that:

"Symptoms and Impairments:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. Persons diagnosed with Asperger’s Disorder have average to above average intellectual functioning."

The CPA figures with respect to Autism (Autistic Disorder) appear consistent with the CDC figures with respect to the entire autism spectrum:

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

The 41-44% figure for the entire spectrum includes those with Aspergers diagnoses who, by definition, do not have intellectual disabilities or cognitive impairment.  They are also approximate the numbers provided set out in the ICD-10 for persons with respect to Childhood Autism F84.0:

"F84.0 Childhood Autism

A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 
...
All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases."(Bold highlighting added - HLD) 

These figures contradict the denial of intellectual disability inherent in Crane's generalizations that "autistic children are highly intelligent", "these children are definitely the scientists of tomorrow"and "they're brilliant".  Such statements deny the reality of the close association between Autistic Disorder and intellectual disability and are clearly reflections of the stigma attached ... not to autism per se ... but to intellectual disability.  It is the connection between autism and intellectual disability that creates concern for many with Asperger's Disorder about merging Asperger's and autism in the DSM-5.  It is that frequently expressed and highly publicized concern that contributes to the stigmatization of those many persons with Autistic Disorder and Intellectual Disabilities. 

The US National Institute of  Mental Health states with respect to Autism Spectrum Disorders in the section  titled Problems That May Accompany ASD:

"Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests."

What is interesting about the NIMH comment is that it ties mental impairment to language disabilities, another area that distinguishes Autistic Disorder from Asperger's Disorder in the DSM-IV.  It is a relationship that is glossed over by those who wish to disavow the obvious relationship between autism and intellectual disability.  By contrast an Italian study, published in the Journal of Intellectual Disability Research has expressly underlined the relationship between autism and intellectual disability:

Abstract

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.

METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The 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. (bold highlighting added -HLD)

The denial of the Intellectual Disability connection to autism, as in Autistic Disorder, will be completed in the DSM-5 and will result in further stigmatization of those with Autism and Intellectual Disability.  It will also contribute to the trend to conduct "autism" research excluding persons with autism and intellectual disability the "vast majority" of those with autism as it is currently defined. The study reports in these cases tend to generalize their findings to the entire autism spectrum of disorders despite the exclusion of intellectually disabled autistic subjects.  The informed, mature  and enlightened approach of studying the connection between autism and intellectual disability suggested by the authors of the Italian study will never see the light of day.

The intellectual disabilities of so many with autism, and the very serious challenges they face,  will simply be ignored for fear of stigmatization. The Alabama example is only one of many examples of such stigmatization. 

There will be more.

Autism Disorders and the DSM-5 Storm - Will Intellectual Disability Realities Be Thrown Overboard?

The DSM-5 storm currently raging amongst psychiatric professionals should not be too shocking to most parents of autistic children.  Autism parents are used to the wars that rage over vaccines and autism and  whether it is right to try and treat or cure our own children. In the complex and controversial world of autism discussions  referring to  the well established fact that the "vast majority" of those with Autistic Disorder diagnoses  also have Intellectual Disabilities will invite outrage.  Even referring to Autistic Disorder as a Disorder will provoke controversy.  Some of these controversies are reflected in professional discussions so we are used to seeing controversy in any mention of autism. While not shocking the latest roar in the DSM-5 storm, this time, again, by Dr. Allen Francis, does shed some light on one aspect of the DSM-5 process that has puzzled me ... the failure to post severity criteria for public consumption on the official DSM-5 site of the American Psychiatric Association even after the start of the clinical field trial phase has been announced.

Dr. Allen Francis has been a persistent and candid critic of the DSM-5 process questioning many conceptual issues pertaining to the diagnostic definition changes of some disorders and the addition of new disorders to the Diagnoatic and Statistical Manual of Mental Disorders of the American Psychiatric Association.  In his latest critique of the DSM-5 process, DSM 5 Field Trials--Missed Deadlines Have Troubling Consequences,  Dr. Francis critiques the sloppiness of the process including missed deadlines for completion of different phases in the process. Dr. Francis focuses on the field trail phase of the DSM revision process and states:


It was patently obvious from the moment of its announcements that the new DSM-5 field test timetable was also a product of fantasy that would not be met in the real world. First off, it should have been clear that the field trials could not possibly start on time 2 months after their announcement. Recruiting the sites, training the personnel, gaining human rights approvals, and pilot testing always take at least 6 months. Predictably, we are already in mid November 2010 and it is still not at all clear when the DSM-5 field tests will actually begin to enroll patients at all its sites.Then there is the design. Forget for the moment that it asks the wrong questions and will produce largely irrelevant answers. Forget that it is testing poorly written criteria sets that are in much too rough a form to be ready for testing. Again, our focus here is only on timetables and missed deadlines. The DSM-5 field trials are a masterpiece of cumbersome complexity-- an administrative nightmare. They were originally scheduled to last 9 months starting July 2010 and ending in March 2011. Instead, the project will probably not start in full force until December 2010 or January 2011 (or later). By my reckoning (based on the experience with the DSM-IV field trials), it will take at least a year to complete from the date of first patient entry. And this assumes a maximum possible efficiency that is not at all likely given all the past laggard DSM-5 performances.
...
Because we are reaching a point of no return, these accumulating delays spell future disaster for DSM-5. The future schedule provides little room for error or forgivingness. The DSM-5 publication date of May 2013 is fixed in stone --both because the new ICD-10-CM codes will become official in October 2013 and because the APA budget depends on DSM-5 publishing profits. But the work to be done is enormous, not really do-able in the remaining time allotted. The result will be a rushed and jumbled DSM-5 that will create huge problems for our field and for our patients.

Dr. Francis's comments do not instill confidence in the DSM-5 to this humble autism dad.  But they do reflect some of the concerns I have felt over the failure by the DSM-5 revision teams to post the severity criteria for the New Autism Spectrum Disorder which will combine Aspergers and PDD-NOS with the existing category of Autistic Disorder. The most important distinction between Autistic Disorder and Aspergers has always been the exclusion from Aspergers Disorder diagnosis of anyone with Intellectual Disability.  Credible authorities have indicated that as many as 75-80% of persons with Autistic Disorder also have intellectual disabilities.  This aspect of Autistic Disorder reality is rarely mentioned or taken into account by anyone  discussing autism including the major  mainstream media or even researchers who now routinely announce "autism" study results based exclusively on research participants with high functioning Autistic Disorder or Aspergers.

When the proposed combination of the various PDD categories into the existing Autistic Disorder  was made public he major mainstream media focused exclusively on the reaction of persons with Aspergers or well known parents of children with Aspergers like anthropologist  Roy Richard Grinker.  The fear of some with Aspergers of being grouped with Autistic Disorder was assuaged by the assurances of Grinker and others who have gushed about how autism no longer carries a stigma. What was being unsaid in such statements was that the fear of stigma was the stigma of being associated  with a category that included so many persons with Mental Retardation now referred to euphemistically as Intellectual Disability.

As the father of a son with Autistic Disorder and Intellectual Disability who is not ashamed to speak openly about the Intellectual Disability aspect of my son's condition my concern is the exact opposite of those who fear association with Intellectual Disability.  My concern is that the severely debilitating challenges facing those with currently defined Autistic Disorder and Intellectual Disability will be further obscured and hidden in  the New Autism Spectrum Disorder. During the DSM-IV era "autism" has become increasingly defined in the public mind, and more and more in the minds of professionals and researchers,  by very high functioning persons with no obvious deficits or challenges. Meanwhile public, media and researchers alike simply ignore those low functioning persons with Autistic Disorder particularly those with Intellectual Disabilities.

Concerned about the persistent attempt to disassociate Intellectual Disability from Autistic Disorder I have visited the official DSM-5 site several times to see if the severity criteria would at least refer to intellectual disabilities or cognitive challenges in the severity criteria category. Despite the site's message to check back frequently there is today still no posting of the severity criteria for the proposed New Autism Spectrum Disorder. Dr. Francis, the lead professional in the DSM revision process that led to the DSM-IV, is obviously  much, much better informed about the likely reasons for this delay than this humble parent.  If he says it is a matter of sloppy work by the current DSM-5 revision teams  than it probably is or at least it is a major factor.

I  have to wonder though whether the persistent stigmatization arising from association of autism with intellectual disability ... with mental retardation ... is also a major factor in the failure of the DSM-5 review team to post severity criteria for the New Autism Spectrum Disorder.  I remain concerned that the challenges facing those most severely affected by autism will continue to be obscured and ignored, even hidden,  by medical professionals and researchers.

If Dr. Allen Francis, captain of the DSM-IV, does not have confidence in the good ship DSM-5, then why should I, a mere passenger,  have confidence that the ship will  weather the storm and arrive at a safe harbor? And why should I have confidence that some of the ship's baggage, including the Intellectual Disability reality faced by the vast majority of persons with the currently defined Autistic Disorder, will not be thrown overboard before the DSM-5 arrives in port?

Some Autism Myths Will Never Die

 Some autism myths will never die:

1. Swimming with Dolphins is an effective treatment for children with autism disorders. The article NE China uses dolphin to treat autistic children reminded me of this nonsense that has been around  for many years that swimming with Dophins has therapeutic value for children with autism. My 14  year old autistic  son Conor was diagnosed 12 years ago. The swimming with dolphins myth was around back then and, as the People's Daily article shows, is still swimming around today.

2. Autism isn't really increasing.  No matter how  far away we move from the DSM-IV changes in 1994 we still see many  like Dr. James Coplan rely on the DSM-IV autism definition changes to deny that the incredible increases in autism since then including recent  drastic upward estimates from the CDC of an increase from 1 in 150 to 1 in 110 is due entirely to the now long ago DSM changes of 1994.  And of course the DSM5 will soon be arriving to further obscure the issue and give the Coplans of the world another straw to cling to.

3.Autism Is 100% genetic   As Teresa Binstock said so succinctly over a decade ago in describing the public health authorities' insistence that autism research be directed toward genetic based research it's gotta be genetic. Decades of genetic focused autism research have resulted in a recent massive study report which tells us that .... there is no single genetic autism factor and that therefore ... autism is genetic. YUP let's keep studying the genetic laundry of autistic children and ignoring environmental toxins including those injected into pregnant women and young children as possible causes of autism disorders.  And if ignoring environmental factors, including possible vaccine factors doesn't work lets attack and demean celebrity autism parents for daring to question the safety of vaccine cocktails and environmental contaminants. 

4. Ari Knows Best. Parents evidence and decisions about their children's autism is anecdotal, selfish, emotional, hysterical and untrustworthy.  So let's talk to the latest publicity seeking high functioning person who might be autistic to learn how the autistic mind works. From Jim Sinclair to Ari Ne'eman and all points in between parents shouldn't decide whether their child is high or low functioning, shouldn't talk about their child's autism disorder like it's a ... disorder ... or a medical diagnosis  or even use terms like functioning. Parents should not seek to treat and cure their own children. After all, Ari Ne'eman, a very high functioning, very well connected recent University graduate knows better than Harold Doherty and other parents of autistic children severely affected by autism what is good for our children. Right? Ari says my son doesn't want to be cured? I guess this person with nothing in common with my son, who doesn't know him and has no responsibility for his care should decide right? Apparently the Obama administration thinks so appointing  Mr. Ne'eman, who denies autism is a medical or real disability, and should not be cured, to prominent national US  disability and autism committees.

From swimming with Dolphins to swimming with Jim, Temple, Michelle, Amanda and Ari some autism myths will never die.