Dr. Tom Insel's Shameful DSM Retreat

Left - Transforming Diagnosis Insel


Right - NIMH Is Not Abandoning the DSM Insel.

In Transforming Diagnosis NIMH Director Thomas Insel said that the DSM was invalid, based on an antiquated system of diagnosis and .... patients deserve better.   Then he retreated, tried to hide and claimed that people were misrepresenting the Transforming Diagnosis article, that the NIMH was just talking about research not clinical practice. Last I checked Diagnosis is a key part of a medical clinical practice. If you are talking about participants or subjects you are talking about research.  If you are talking about patients who deserve better you are talking about clinical practice.  If you say that the DSM is invalid and antiquated you are not supporting the DSM, you are blowing it up.

You can run Dr. Tom but you can't hide.  Your words, your Transforming Diagnosis article are out there in the public domain.  Patients deserve a medical diagnosis based on research.  You said it and I believe it.  I don't believe the excuses offered in your shameful retreat.

TIME Promotes Myth That Many With Autism are Highly Intelligent

In Could Amanda Knox Have an Autism Spectrum Disorder? TIME adds its influential voice to those who propagate the  myth that "many with autism are highly intelligent".

Amanda Knox is the 23-year-old American college student who was convicted of sexually assaulting and killing her roommate, Meredith Kercher, in Italy in 2007.  The TIME article makes a plausible case for the proposition that some of the evidence used to convict Ms Knox, including a forced confession, and some seemingly callous behavior, may indicate an un-diagnosed Asperger's Disorder condition rather than evidence of guilt. That possibility has become particularly important in light of revelations that DNA trace evidence used to convict Ms Knox may, after review by independent experts, be considered unreliable.  

In elaborating on the Asperger's Disorder possibility,  and explaining some aspects of Ms Knox's behavior including the confession, the TIME article states:

"like many autistic people, Knox was highly intelligent but also extremely naïve and gullible:

"She's the smartest person you'd ever know" but "dumb as a rock" when it comes to "street sense," [her stepfather said]. In conversations with her friends and family, a portrait emerges of a person with a childlike innocence. She was, as her mother, Edda, puts it, "oblivious to the dark side of the world.""

If the above quote said like many people with Asperger's Disorder", Knox was highly intelligent it might be an accurate statement.  Under the DSM-IV an Asperger's Disorder is excluded where the person has no cognitive development issues:

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

The lack of clinically significant cognitive developmental delay does not necessarily mean that a person has high intelligence but it does leave that possibility open. The article provided no studies to indicate that many persons with Asperger's are highly intelligent.

Where the article is flat out wrong though is in stating that many persons with "autism" are highly intelligent.  That information is contradicted by the Canadian Psychological Association 2006 brief to a Canadian Senate Committee stated that:


• 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. [underlining added]


As noted above the CPA reference to autism is a reference to the autism spectrum disorders except Asperger's.

The United States Centers for Disease Control, the CDC,  has conducted two surveys which looked at the entire spectrum of autism disorders, including those with Aspergers and found that:

"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."

Contrary to the view, expressed by TIME,  that many persons with autism are highly intelligent, 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." [underlining added]

If Amanda Knox does in fact have an Asperger's Disorder, and if the Disorder casts doubt on the confession obtained from her and provides an alternative explanation for the behavior that was used to convict her then I certainly hope the issue is fully explored.  To that end TIME's powerful voice could be of substantial value in overturning a possible wrongful conviction for murder.  That would be a great accomplishment if all those developments play out as indicated.  In reaching such a conclusion though it is unnecessary for TIME to proceed by promoting the myth that many persons with autism are highly intelligent.  This myth, while pleasant for many to embrace, in fact obscures the very serious challenges faced by the vast majority of persons with Autistic Disorder who in fact are also cognitively impaired or intellectually disabled.

TIME with its great influence should be more careful in how it portrays autism, including Autistic Disorder, and the challenges, including intellectual disabilities,  faced by persons with Autistic Disorder, to the world.

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.

Synaptic Disorder Instead Of Autism Spectrum Disorder?

The word "Autism" has become romanticized, occasionally glorified, in public discussions of the neurological disorder. It is literally being stripped of its meaning as a diagnostic label of a mental disorder and is being turned into a different way of thinking, a way of life, a culture. Maybe it is time to start thinking about dropping the use of the term autism in the DSM, abandon the Autism Spectrum Disorder concept and replace it with a more informative, less romanticized, less politicized  name ... Synaptic Disorder.

At its most extreme the glorification of autism spectrum disorders has seen historical talents and geniuses from Mozart to Einstein "diagnosed" long after their deaths as  having been "autistics". One of the silliest of such fantasies is the speculation that Jesus Christ was autistic. At the other end of the stigma spectrum are those aided by the American Psychiatric Association, and its dilution of the concept of autism disorders in the DSM-IV,  who want the world to believe that autism and intellectual disability are unrelated conditions that are "coincidentally" present in 75-80% of those with Autistic Disorder and between 40 and 50% of all persons with autism spectrum disorders. 

Maybe it is time to consider abandoning use of the term "autism" altogether and replace it with a new, more informative, and less politicized term .... synaptic disorder.  In his December 2009  Simons Initiative on Autism and the Brain Lecture at MIT, "Autism, What Do We Know? What Do We Need?",  Dr. Thomas Insel, Director of the National Institute of Mental Health (NIMH) acknowledged that autism is not fully explained by genetics. It is also necessary to consider environmental factors ( a point made 10 years earlier by Teresa Binstock and emphasized by many autism authorities including Dr. Irva Hertz-Picciotto).  Dr. Insel also discussed the matter of how we describe autism disorders and whether we are talking about these disorders in ways that are helpful to understanding them biologically as summarized on the MIT World review of his lecture:

"The formal definition of autism includes three main components: deficits in social behavior, abnormal language, and repetitive or restricted (motor) behaviors (hand flapping, for instance). But it can also include a host of other associated features like seizures, mental retardation, GI disorders, dysmorphic appearance, and regression.

Insel compares talking about autism as a single disorder to talking about epilepsy or fever or chest pain as a single disorder. Discussions must include understanding details at many levels—genetic, environmental, cellular, behavioral, systems. While researchers may now increasingly refer to autisms (plural) or think of the disorder along a spectrum, these categories may cause more problems in getting to the underlying biology of the disorder. Current research suggests that autism is a developmental brain disorder, specifically a disorder of synapses." (Bold emphasis added-HLD)

Given Dr. Insel's view, as Director of the NIHM, speaking at MIT, that autism is a synaptic  disorder  would  it not be prudent for the DSM-5 team to hold off on  another transformation of the pervasive developmental disorders, already spoken of as autism spectrum disorders, until the research confirms (or refutes) the view that autism is a disorder of synapses?  Dr. Insel has indicated that describing autism as a disorder of synapses, synaptic disorder, may be more helpful in getting to the underlying biology of the disorder.

Synaptic Disorder instead of Autism Spectrum Disorder? Surely it should at least be considered by the American Psychiatric Association  as it once again revises the DSM. 

National Institute of Mental Health Drops Chelation Autism Treatment Study

The National Institute of Mental Health has decided to drop a planned study of chelation as an autism treatment study. The AP reports that the NIMH issued a statement saying the money would be better used testing other potential therapies for autism and related disorders.

autism