SFARI, Once Again, Continues Misrepresenting High Functioning Autism/Aspergers Only Research As "Autism" Research

SFARI blog article depiction of a resting "Autism" brain accompanying

 review of study employing only Aspergers subjects as representing 

"autism" for comparison with non autistic resting brains

SFARI continues its agenda of misrepresenting high functioning autism/aspergers only studies as representing "autism".  It has published, on its blog page, several study reviews employing only high functioning autism or Aspergers subjects as "autism" studies, knowing that the "Autism Spectrum Disorder" is marked by substantial variation, complexity, heterogeneity.  The World Health Organization, September 2013 indicated that 50% of persons on the "autism" spectrum also have intellectual disabilities.  The fact that intellectual disability is so heavily represented on the autism spectrum  has been known to extremely well informed, exceptionally intelligent sources like SFARI for decades as articulated by CDC autism expert Dr. Marsha Lynn Yeargin-Allsopp who stated that the intellectually disabled represented the "vast majority" of persons on the pre-DSM-IV autism spectrum. Yet SFARI  publishes articles and titles  equating "Aspergers" or "high functioning autism" with the entire autism spectrum as it has done again with its review of a study of activity in resting "autism brains" (emphasis added):

'Resting' autism brains still hum with activity

Maia Szalavitz

21 February 2014

"Even at rest, the brains of people with autism manage more information than those of their peers, according to a new study that may provide support for the so-called ‘intense world’ theory of autism.

The research, which was published 24 December in Frontiers in Neuroinformatics, included nine children with Asperger syndrome, aged between 6 and 14 and ten age-matched typical children. The researchers scanned their brains using magnetoencephalography (MEG), a noninvasive method that doesn’t require lying in a noisy, confined space as magnetic resonance imaging does.?"

SFARI publishes a disclaimer on the bottom of its blog page stating that "News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation." The disclaimer may well provide SFARI with protection against any hypothetical legal liability for the contents of its blog pages but it does not change the reality that SFARI determines who can publish on its site and is helping to promote a gross misrepresentation of the nature of autism disorders by helping equate Aspergers with the entire autism spectrum a task already, unfortunately,   under way with the DSM-5 unified description of the various autism disorders. 

I also understand very well, as the father of a son with severe autism disorder and intellectual disability, now 18, that the inclusion of persons with severe, low functioning autism in MRI studies would be extremely difficult and probably impossible.  Articles that use only Aspergers or High Functioning Autism should be described in those terms throughout the article and title and conclusions should not be drawn about persons whose intellectual disability precludes their participation in the study.    

SFARI's failure to ensure that writers using their site privileges do not generalize to the entire autism spectrum of disorders studies involving only High Functioning Autism/Aspergers subjects is not supported by evidence and is irresponsible.  

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If Autism Is A Brain Disorder, Surely We Need To Look At The Brain?

Dr. Aditi Shankardass: If it is a brain disorder, surely we need to look at the brain!

Autism is one of the developmental disorders described as a brain based disorder in the presentation by Dr. Aditi Shankardass in which she makes the observation that if developmental disorders are brain disorders shouldn't we look at the brain in order to properly understand, diagnose and treat them?

"Despite the fact that each and every one of these disorders originates in the brain most of these disorders are diagnosed solely on the basis of observable behavior but diagnosing a brain disorder without actually looking at the brain is analogous to treating a patient with a heart problem based on their physical symptoms without even doing an EEG or a chest X-ray to look at the heart. It seems so intuitively to diagnose and treat a brain disorder accurately it would be necessary to look at the brain directly. Looking at behaviour alone can miss a vital piece of the puzzle and provide an incomplete or even a misleading picture of the child’s problems."

In addition to the EEG based program described by Dr. Shankardass the recent Stanford/Packard  MRI based study indicates that it may be possible to provide topographical imaging of brains  that can distinguish between the brains of persons with autistic disorder and those who are not autistic. The study authors also indicate that more severe autism brain differences are related to more severe autism.

If autism is a brain disorder, surely we need to look at the brain?

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Of No Import: Autism Bran Scan Study Excluded Subjects With Intellectual Disability

My Lords, view these letters full of bad mischance.
France is revolted from the English quite, 
Except some petty towns of no import

- The Second Messenger, The Fifth Part of King Henry VI, Act I, Scene I, William Shakespeare

The new MRI Bran Scan study   promises to be a major event with important consequences for diagnosis of autism disorders and  establishment of autism biomarkers. The results could affect our understanding of the nature of autism disorders, what causes them and ... who is, or is not, autistic.  Unfortunately the study, like so many other autism studies and discussions of autism disorders,  excluded those with intellectual disabilities.

It is common in public discussions of autism as reflected in Hollywood movies and major media institutions like CNN, CBC and the New Yorker, government institutions like the IACC, and autism advocacy groups like Autism Speaks and ASAN to talk about "autism" from the perspective of very high functioning persons with autism or Aspergers like Temple Grandin, Alex Plank, Ari Ne'eman, Jon Elder Robison, Amanda Baggs and Michelle Dawson.  Virtually no effort is made to discuss the realities of those very substantial number of persons with autism who are intellectually disabled,  those who constitute the "vast majority", as much as 75-80% of persons with Autistic Disorder.

Even in the  DSM-IV era with its broadly expanded definition of autism which includes all those with Aspergers who, by diagnostic definition, are not intellectually disabled, the total numbers of persons with intellectual disabilities  constitutes between 41-44% of all persons with Autism Spectrum Disorders of any type ... according to two recent CDC surveys. Yet many research projects purporting to study "autism" exclude from their subject pool persons with autism disorders and intellectual disabilities. The autism brain scan study by Ecker et al published in the August 11, 2010 edition of  the Journal of Neuroscience is no exception to this trend. It expressly excludes those persons with autistic disorder who are intellectually disabled:

"Participants. Twenty control adults were recruited locally by advertisement and 20 adults with ASD were recruited through a clinical research program at the Maudsley Hospital/Institute of Psychiatry (London). All volunteers (see Table 1) gave informed consent (as approved by the Institute of Psychiatry and Bethlem and Maudsley Hospital Trust research ethics committee), and had a full-scale intelligence quotient (FSIQ)>75 [WASI (Wechsler, 1999)]."

There may have been ethical and practical limitations which precluded the participation of  autistic subjects with intellectual disabilities. But it does not seem reasonable to this humble father of a 14 year old son with Autistic Disorder and intellectual disabilities to expressly exclude from a study of the brains of persons with "autism" such a large group of autistic persons distinguished in such an important way from those who are the subject participants in the study.  Notwithstanding the express exclusion of autistic participants with intellectual disabilities the study authors draw conclusions about persons with "Autism Spectrum Disorder":

"Discussion

Autism affects multiple aspects of the cerebral anatomy, which makes its neuroanatomical

correlates inherently difficult to describe. Here, we used a multiparameter classification approach to characterize the complex and subtle gray matter differences in adults with ASD.  SVM achieved good

separation between groups, and revealed spatially distributed and largely nonoverlapping patterns of regions with highest classification weights for each of five morphological features. Our results confirm that the neuroanatomy of ASD is truly multidimensional affecting multiple neural systems. The discriminating patterns detected using SVM may help further exploration of the genetic and neuropathological underpinnings of ASD."

It appears that Ecker et al, when drawing conclusions about the brains of persons with "Autism Spectrum Disorder" do not feel that the participation of subjects with "ASD" who are intellectually disabled is necessary, despite the large percentage of the Autism Spectrum that they comprise. It seems that when it comes to persons with autism disorders who are intellectually disabled Ecker et al are of the view that the fact of being autistic and intellectually disabled is of no import, that it is sufficient to categorize the various subtypes of autism spectrum disorder without actually looking at such a large and severely affected component of that spectrum.

Is the Ecker study a precursor of the New Autism Spectrum Disorder in the DSM5? Will those with Autism Spectrum Disorder and intellectual disabilities simply be excluded from autism diagnosis? It is obviously too early to draw such a conclusion but this study with its cavalier exclusion of intellectually disabled autistic subjects from an attempt to establish biomarkers for "autism" raises that possibility. Intellectually disabled autistic adults are largely hidden from society physically in institutions and from public awareness. as reflected in Hollywood and mainstream media portrayals of autism. They are now excluded from some important autism research. In the DSM5 exclusion from the "autism spectrum" itself may be the final result.

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Autism and the Role of Neurologists

ABC News has an interesting online feature The Answers to Autism May Be Inside the Mind in which neurologist Dr. Fernando Miranda argues that neurologists should be more involved in the diagnosis and treatment of autism disorders. The feature includes parent input, including an interview with Sarah Kavanaugh, whose son had been diagnosed with an autism disorder but who sought Dr. Miranda's assistance. An MRI disclosed that Beckett's corpus colusum, "the brain freeway that connects the two hemispheres, was a bit thin. That is crucial in any sort of diagnosis because it can affect language."

An EEG indicated signs of seizures which were not necessarily visible to observers. After more tests and a sleep EEG it was determined that her son did not in fact have an autism disorder. He " has a version of Landau Kleffner syndrome, a brain seizure disorder that can masquerade as autism." Since that diagnosis Kavanaugh's son has benefited substantially from anti-seizure medication.

The ABC feature also points out that it is not clear that all children would benefit from anti-seizure medication or that anti-seizure medication is always appropriate in cases where there are indications of limited seizure activity. Research is not currently advanced enough to indicate which children with seizure like symptoms might benefit from such medication. The drugs, in the view of some doctors, can be harmful. There is a risk that such medications could become over prescribed as some feel has happened with ADHD medications.

The children featured in this article benefited from the intervention of neurologists and ABC has done a service to children with autism and autism like conditions by highlighting that fact.

autism

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