Are Autism Disorders Morphing Into Einstein Turing Syndrome?

Autism disorders are misrepresented in the mainstream media, on the internet and, as has been confirmed many times, in autism research which excludes those with severe autism disorders simply because it is too difficult to work with severely autistic children and adults. One of the sorry ways in which autism disorders are misrepresented is whenever mention is made of historical geniuses like Albert Einstein or Alan Turing whose personal qualities are attributed to undiagnosed cases  of autism.  Autism is portrayed as a different way of thinking, the foundation of genius, with no mention made of those severely affected by autism and the large numbers of autistic persons with intellectual disabilities. Maybe though it is time to divide the autism spectrum into two groups, one for whom autism is a disorder under the DSM and ICD diagnostic manuals and one for whom it is a matter of genius and identity, a different way of thinking?

Arguably the silliest speculation of all is the notion that Jesus Christ was autistic a theory promoted by one Alan Griswold of Autistic Symphony fame and the MDs, PhDs and RNs who co-authored  the article Did Jesus Christ Have Autism? An Interdisciplinary Evidentiary Analysis into the Psychiatric and Medical Literature Supporting the Hypothesis That Autistic Spectrum Disorder (ASD) Was the Root Cause of a Terrible Cross to Bear.  The underlying message of such fanciful speculation is simple ... autism is not a disorder ... it is a just a different way of thinking that includes every genius known to history.  

Anniversaries such as the recent 100th anniversary of the birth of Alan Turing the genius who contributed so much to our modern computer world and to the Allies efforts in WWII, and who was prosecuted for his homosexuality, inevitably spur more of the autism as genius rhetoric that obscures the real challenges faced by persons with classic and severe autism disorders: (1) (2, see in particular the comment section).

A significant question to me is whether the DSM5 committee is going in the wrong direction by uniting the autism disorders into one spectrum disorder varying in severity.  Would it make more sense to describe at least two different disorders? 

One for those who actually suffer from the deficits of severe autistic disorder, the vast majority of whom also suffer from intellectual disability. The other for the higher functioning individuals who identify strongly with history's geniuses and some of whom do not wish to acknowledge the existence of  low functioning persons with autism disorders?  

Why combine under one diagnostic umbrella persons with such different challenges in life, one group who clearly have a neurological disorder and the other for whom the term "disorder"  itself is an affront to be erased from public consciousness?  

Autism and Aspergers, (Einstein Turing Sydrome?), two different realities, two different diagnostic categories, now and in the future?  Since autism is diagnosed by behaviors and functioning levels shouldn`t consideration be given to the possibility that the gaps between those who are severely impaired and those who are capable of great feats of art, literature and science should not be grouped in one diagnostic basket?

Autism Disorders and Intellectual Disability: Claim that 75-80% of Persons with Autistic Disorder are Intellectually Disabled is Based on Credible Authorities

UPDATE: Alan Griswold is in very deep denial. I have now provided 3 credible sources to support the 75-80% range of persons with Autistic Disorder as also being Intellectually disabled - the ICD, the CPA and the CDC and Mr. Griswold can only repeat  his opposition to an association between Autistic Disorder and Intellectual Disability.  Of course accepting this information would require Mr. Griswold to reject his contribution to the world's discussion of autism disorders, his book Autistic Symphony which rejects autism as a medical disorder:  

"Autistic Symphony offers a unique look at the fascinating subject of autism. Challenging the psychiatric and scientific perspectives that focus exclusively on disabilities and impairments, Autistic Symphony celebrates the challenges and rewards experienced by every autistic individual, and argues that far from being a medical monster, autism is one of our culture's greatest strengths."

 
As I mentioned in my previous post Alan Griswold of Autistic Aphorisms is one of those comfortable with speculation that Jesus Christ may have been autistic but is not comfortable with the fact that many persons with Autistic Disorder are Intellectually Disabled.  Mr. Griswold and Astrid at at  Astrid's Journal disagree with my numerical references and wrongly describe them as self constructed.

My claim is not that 75-80% of all persons with an Autism Spectrum Disorder are also Intellectually Disabled as Astrid in particular seems to think. My assertion is that credible authorities have stated that 75-80% of persons with Autistic Disorder are intellectually disabled.  I stand by that assertion and, once again, for those who actually read before reacting, offer the sources:

1. Canadian Psychological Association    Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006.

In that brief the CPA refers to 2 separate categories "Autism" and Asperger's":

"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.


...

In sum, persons with ASD present with a wide range of impairments in cognition, language and
behaviour which present in some common but reliably distinct ways between Autism and
Asperger’s disorders."

2. Center for Disease Control Counting Autism 

CDC’s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD. This is a prevalence of about one percent of children. These results reflect data collected by CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network in multiple communities throughout the U.S. in 2006.

Estimates are based on health and education records from participating communities, which includes eight percent of the U.S. population of eight year olds. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.


...


Cognitive Functioning (from the pdf version)

2004
 
From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).

2006
 
From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test reults on intellectual ability for at least 75% of the children identified)

The CDC figures of 41-44% for all persons on the Autism Spectrum having an intellectual disability are consistent with the 80% figure for those with Autism EXCLUDING Aspergers cited by the CPA. These figures and sources are my authorities for the upper end of the 75-80% range of persons with Autistic Disorder having an Intellectual Disability.  That is not a self constructed figure.

The lower end of the range I cite is the figure based on older sources like the 1992 ICD diagnostic criteria for Autism:

3.The ICD-10 Classification of Mental and Behavioural DisordersWorld Health Organization, Geneva, 1992


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.


F84.1 Atypical Autism


A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.


Includes:
* atypical childhood psychosis
* mental retardation with autistic features

These three authorities are the primary sources for my assertion that 75% (3/4 in the ICD) to 80% (CPA, CDC) of persons with Autistic Disorder also have intellectual disability.  Those are not self constructed figures as claimed by Alan and Astrid.  They are figures provided by credible authorities.

Autism Disorders and Identity: Some High Functioning Autistics Angry Over Being Associated with Intellectually Disabled

One of the most unusual elements encountered by parents of low functioning, intellectually disabled autistic children is the angry, hostile reactions of some persons with High Functioning Autism and Aspergers to any mention of Intellectual Disability as a characteristic of autism disorders. A recent example amongst many that I have encountered is the May 1 comment by Alan Griswold on his blog Autistic Aphorisms and the comments by some other high functioning autistic persons in response. The commentary, including Mr.Griswold's, dismisses credible authorities like the Canadian Psychological Association and the CDC who have published statements indicating that 80% of persons with Autistic Disorder and 41-44% of all persons with Autism Spectrum Disorders are also intellectually disabled. In the place of these authorities the commentators substitute their own opinions and their obvious dislike of being associated in a diagnostic category with so many persons who are intellectually disabled.

Mr. Griswold is the author of a piece of autism enlightenment calld "Autistic Symphony".  In that work, apart from the title portraying autism as beautiful music, Mr. Griswold includes a chapter embracing an article which purports to show by a review of historical references that  Jesus Christ was autistic. The "Jesus was Autistic" nonsense is the most extreme example of efforts to comb history and define various remarkable individuals as autistic ... usually geniuses like Einstein, Van Gogh and Mozart.  For those who identify with the autism label any talented, positive figure must have been autistic ... but not those intellectually disabled autistics living with us today. 

The Canadian Psychological Association and CDC figures pointing to high numbers of intellectually disabled autisics can not be trusted but a flimsy, flaky article speculating that Jesus was autistic, well that is truly worthy of embrace by the author of Autistic Symphony.  Identification with a psychiatric diagnostic manual category may help some people understand challenges they have faced.  It can also, in some cases, inflame their bigotry towards those less advantaged ... towards those many  low functioning autistic persons with intellectual disabilities.

Autism may well be a symphony in some people's fantasies but in the real world it is  a number of serious disorders.  In the case of Autistic Disorder 75-80% of persons with the disorder are also intellectually disabled. All the cheap, derogatory insults and bigotry towards those with intellectual disabilities on display at Autistic Aphorisms will not change those facts.

Further Notes On Alan Griswold's Bizarre Autism Rant

I have to admit I was very startled reading Alan Griswold's bizarre rant about the Deborah Fein study being a "fictitious study" and the intervention involved not being ABA (yeah right 40 hours a week of intensive early behavioral intervention and it wasn't really ABA?) .

I also found it odd that AG would single me out for fame and misfortune in his blog post. (rant). His fellow Neurodiversity blogger Kristina Chew at the Change.org's Neurodiversity page, and with whom I usually disagree, concurred with my interpretation of the word "study" (it means "study" Alan) and IEBI as being ABA:

An ongoing study involving children on the autism spectrum aged nine to 18 is finding that "the range for children recovering from autism is 10 percent to 20 percent." As reported in yesterday's Telegraph, University of Connecticut psychology professor Deborah Fein is studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum. The study is still in its preliminary stages and is funded by the NIMH:

Of course Ms Chew supports the Neurodiversity ideology Mr Griswold subscribes to so she wasn't on the receiving end of the AG rant. Where I have never drunk from the ND Kool-Aid I was singled out for Mr. G's weird little outburst.

I wonder if Alan Griswold is capable of admitting his errors?

autism

Fein's Autism Study: Alan Griswold's Bizarre Commentary

Anti-ABA blogger Alan Griswold appears to have consumed too much coffee, before publishing his comment "Harold Doherty's Fictitious ABA Study". In his silly rant, Mr Griswold contends that the study was fictitious, that there is no ongoing study, etc. He claims that I took some words about what he calls a non-existent study out of context from a Washington Post article.

Here is what I said about the study itself in my comment Autism Recovery: More Evidence of ABA Effectiveness :

a study was presented at an autism conference by University of Connecticut psychology professor Deborah Fein showing recovery of between 10 and 20% of subjects originally diagnosed as autistic who were later determined to have lost the autism diagnosis after years of intensive applied behavioral analysis.

The full WP article, in fact makes several references to a study conducted by Professor Fein:

She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic ... The study, funded by the National Institute of Mental Health, involves children ages 9 to 18.

...

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

The WP article also indicates clearly that children recovered after years of intensive behavioral therapy. If the study pertained to an intensive behavioral therapy other than ABA I don't know what that would be and Mr. Griswold does not identify any such therapy.

I am not sure if Mr. Griswold actually read the WP article or not but it clearly indicates that Ms Fein conducted a study as I indicated and contrary to Mr. Griswold's strange commentary.

Despite his tortured interpretation of the WP article the whole point was that it demonstrated, recovery from autism, which in the real world outsdie of Mr. Griswold's blog, is a measure of the effectiveness of the intervention.

Mr. Griswold also mocks the 10-20% results but glosses over the fact that the 10-20% figure refers to full recovery, children assessed as autistic who no longer met the criteria for an autism diagnosis after years of behavioral intervention. The WP article does not state that the other children did not benefit from ABA. It was silent as to whether the children who did not lose their diagnosis acquired benefits short of full recovery.

I did not state that the study as reported was a comparative study with any other interventions. What I did do was refer again to the AAP 2007 comments which appear on the sidebar of this blog and which I repeat again:

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, 2007

File Alan Griswold's blog under B in your blog lists, B for bizarre. But leave room. Any time a study, report, article, analysis or commentary suggests that some children can recover from autism those who have made a fetish out of the neurological disorder will start buzzing hysterically. Griswold's is only one of many such rants' to come.

autism