KATiE MiA/Aghogday: The Problem of Determining Who is "Neurotypical"

Monday, March 11, 2013

The Problem of Determining Who is "Neurotypical"

I think if one is going to use an "Us vs Them" ideology, the first thing one might consider determining is "Who Us Is":

ASD is described as a lifelong disorder of reciprocal social communication that is diagnosed through social communication impairments mandatory required in developing and maintaining peer appropriate relationships, social-emotional reciprocity, and non-verbal language impairments that must be observed during the course of diagnosis and RRBI behavioral impairments that may be met by client history alone, per the newest DSM5 guidelines, as described recently by Sue Swedo, Chair of the DSM5 committee, from the APA website linked below.

http://www.psychiatry.org/practice/dsm/dsm5/dsm-5-video-series-changes-to-autism-spectrum-disorder

The identified factors that potentially underlie and co-exist as what is described as ASD currently are far ranging and far reaching beyond the over 4,000 now identified associated genetic markers.

Learning disorders/conditions in communication associated with ASD mimic many of the autistic like traits as standalone disorders including Pragmatic Language Impairment, Nonverbal Learning Disorder. Hyperlexia, along with other associated conditions like ADHD, Auditory Processing Disorder, Sensory Processing Disorder, OCD and the more controversial category of behavioral addiction.

That's nine conditions many of which are often co-morbid assessed in the same individual with or without a diagnosis of ASD.

Then there are the identified genetic conditions associated including Tuberous sclerosis, fragile X syndrome, a potential genetic issue with abnormal brain growth specific to males with regressive autism, Noonan’s syndrome, 22Q11 deletion syndrome, and potentially even characteristics of androgyny.

A recent "Discover" article identified an abnormality in the left hemisphere of Temple Grandin's Brain that likely resulted in some of her savant like skills in right hemisphere brain function.

Conversely, Non-verbal learning disorder, symptoms of which have been studied in the majority of individuals diagnosed with Asperger's syndrome, often is associated with lesions in the right hemisphere of the brain, which can potentially be compensated by enhanced adaptation specific to the left hemisphere of the brain.

This is part of the general identified process of neuroplasticity in human adaptation to inherent and environmental challenges. This can potentially result in a visual or verbal navigation of the world that in terms of human experience is a different universe of being. Yet still identified by a list of observed behavioral impairments, described, defined, and labeled as ASD(s).

Then there are the potential health factors of immune system dysfunction, GI problems, mitochondrial dysfunction and others.

That's just a small list of identified potential underlying factors, many of which may work in a synergistic fashion in what results described as a spectrum disorder.

Every person that comes online identifying on the spectrum has their own flavor of autism and their own point of view on how the big picture issues should be addressed, but in autism there is no big picture other than the diagnostic classification. Nature doesn't play by DSMIV or 5 rules or abstract concepts of rules described in words like "neurotypical"

Back to the subject of ASD, the Autism Quotient (AQ) test designed by Simon-Baron Cohen is successful in correctly identifying ASD in 80% of individuals previously diagnosed.

However, the Autism Quotient test identifies a scale of autistic traits in the general population similar to what people score on the AQ test who are actually diagnosed with an ASD, in 10 to 15% of the population, in what Cohen describes as a "Broader Autism Phenotype".

An Autism range score on the AQ test correctly screens 10% or less of people in the general population in risk of actual diagnostic condition, so the AQ tool as a diagnostic tool is not an effective one.

The Aspie Quiz is no more accurate, as identified by the author of that Quiz, at predicting an actual diagnosis of autism in the general population, and he also identifies the Aspie Quiz as a tool to screen Aspie traits, but not as an effective diagnostic tool.

Moving out further than the 10 to 15% in the general population identified on a broader autism phenotype are studies in Sweden and the US that have identified about 30% of the general population meeting at least one criterion element of an ASD diagnosis.

The author of the Aspie Quiz identifies about 10 to 15% in the general population, from his own statistical analysis, has having a strong component of aspie traits that is his reported equivalent term for "neurodiverse" traits.

Currently there is somewhere close to a .6% border in the general population, in the US, of people who are officially diagnosed with an ASD, per CDC estimates.

According to CDC epidemiological studies there is close to 1.14% of 8 year old children and close to 90% of those children identified as receiving educational support in Individualized Education Plans. Out of that identified 1.14%, 44% are assessed with autistic Disorder, 47% with PDDNOS, and 9% with Asperger's Sydrome.

Approximately 20% of the individuals identified diagnosed with Asperger's syndrome in the CDC assessment are identified as females comprising about 2% of the total assessed ASD demographic, with males diagnosed with Asperger's syndrome comprising about 7% of the total assessed ASD demographic.

There is no clear border of "Who Is Us" or "Who Is Them", as that relates to ASD or Autistic like traits. The information provided here, all of which can be sourced upon request, is clear evidence of that.

There is the potential that close to 1 out of every 3 people one meets on the street meets at least one criterion element associated with ASD.

There is also the potential that 1 to 2 out of every 10 people one meets on the street scores in similar ASD territory on the Aspie Quiz and/or AQ test, similar to people reporting scores who have either taken the quiz and/or test during a period of their life that led to an official diagnosis, after an official diagnosis, or assessed their place on the spectrum per self-diagnosis, in part, as a result of AQ scores of 32 out of 50 and/or Aspie Quiz scores of 125 out of 200, that respectively put an individual in ASD trait territory or Aspie trait territory. However, these are also scores that are potentially shared by 10 to 15% of the general population, in what is described as a broader autism phenotype.

Any person out of the 30% of the population identified as meeting at least one ASD criterion element could describe themselves, at least in part, with the adjective of "autistic" to describe their autistic like traits.

Parsing the autistic or non-autistic traits out of the general population by general observation alone is virtually impossible when one looks at the scale of what it means to have autistic-like traits in the much larger general population, where 2 million might be officially diagnosed, 30 to 45 million might be on a broader autism phenotype, and up to 100 Million might meet at least one criterion element of an ASD diagnosis.

The current statistics are based on DSMIV criteria that has up to 2027 possible diagnostic criterion element combinations to technically meet the requirements for just the 1 disorder of Autistic Disorder out of the 5 current disorders that constitute the ASD spectrum, where two people technically can have completely different criterion element impairments diagnosed with the same label of Autistic Disorder.

Under the DSM5 criteria for ASD there are 11 possible diagnostic element combinations to technically meet the requirements for an ASD diagnosis. However, with the new guidelines per summary by Sue Swedo, chair of the DSM5 committee, in the attached link provided earlier in this post, for those people that meet the required RRBI criterion elements by client history alone, there is effectively 1 diagnostic element combination to be met in an actual observation of behavioral impairments to meet requirements for an official diagnosis as all three of the observed criterion elements of impairments in Social-Communication are mandatory.

Those three mandatory criterion elements are described very broadly per each criterion element so there is still almost an unlimited number of nuanced impairments that might or might not lead to a subjective analysis of diagnosis by the diagnosing professionals. But this was still the case to a lesser degree in the 2027 diagnostic combinations, just for Autistic Disorder, among all of the DSMIV criterion elements that were also broadly described for the 12 individually described criterion elements for Autistic Disorder.

It is virtually impossible, at this point in time, to generally observe by behavior alone, "Who Them Is Now", because of the complexity of what autistic traits are described as and the demographics of those criterion elements, at least one met, in up to 30% in the general population (100 million people).

It is also virtually impossible, at this point in time, to generally determine by observing behavior alone "Who Us Will Be", just specific to the .6% of the general population, currently estimated as officially diagnosed, who may or may not be diagnosed with an actual official diagnosis of ASD, in the future, under these new much more restrictive number of criterion elements mandatory required for a diagnosis under the DSM5 ASD criteria.

Any label that describes "A Them", without a clear method of determining "Who Them Is", is interesting rhetoric but effectively useless in terms of semantics as it applies to the human condition.

Ironically, this is exactly the reason there is a new much more restrictive ASD definition now in the DSM5 criteria for ASD.

The research that Catherine Lord, a member of the DSM5 working committee, recently led, has been used in the public media to justify the effectiveness of the new DSM5 criteria in eliminating potential misdiagnosis in the general population.

The study led by Lord, used a designed DSMIV diagnostic tool as opposed to a designed DSM5 diagnostic tool to assess records of individuals in a general population clinical sample and found that the DSMIV diagnostic tool incorrectly identified 90% of the general population sample that was not diagnosed with an ASD.

So in effect, the DSMIV tool per the spectrum disorder of PDDNOS was recognized as no more effective than the Aspie quiz or AQ test to diagnose a person with an ASD.

The American Psychological Association has come to the effective conclusion by way of Lord's research that not even the APA had any clear idea of "Who Us Is", as that relates to a diagnosed ASD, since at least 1994, when the DSMIV went into effect.

The Gillberg criteria for Asperger's syndrome was and still is, overall, a much more effective diagnostic tool to avoid misdiagnosis in the general population as opposed to the loosely described and defined DSMIV criteria, overall, for all ASD's, including PDDNOS which is assessed as the proportion of overall diagnoses in some statistical surveys as high as close to 70%, per DSMIV and ICD10 standards for diagnosis.

That to me is the most ironic part, that the Asperger's syndrome criteria developed by Christopher Gillberg, as more directly in reference to what Hans Asperger identified as "Autistic Psychopathy" in his case studies, has been the most effective way, overall, of insuring an actual neurodevelopmental disorder was diagnosed, to avoid the potential for misdiagnosis.

Much of what "Us Is", is still in murky waters, per what ASD is or is not. And of course, the same applies to "Them", whoever "Them Is".

Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html