Monday, November 22, 2010

Autistic Persons With Intellectual Disability Excluded From Yet Another Autism Spectrum Disorder Study

Researchers in the US and Canada are not waiting for revisions to the ICD and DSM to group the pervasive developmental disorders under the banner of the New Autism Spectrum Disorder. Nor are they waiting for formal diagnostic revisions to exclude the 75-80% of persons with the currently defined Autistic Disorder who are intellectually disabled from the New Autism Spectrum Disorder when conducting their research. 

Another fMRI study, this time from Yale,  Neural Signatures of Autism, uses only autistic subjects with average intelligence while purporting to have found results applicable to all persons with autism spectrum disorders:

"Autism spectrum disorder (ASD) is a strongly genetic, highly prevalent neurodevelopmental disorder characterized by striking social deficits (1, 2). Among the most scientifically challenging features of ASD are its phenotypic heterogeneity and genetic variability, which constrain successful identification of genes underlying the clinical syndrome. Despite these challenges, we hypothesize that the various factors contributing to the expression of ASD might exert their effects through a circumscribed set of neuroanatomical structures (3); that is, it is possible that the simplest and potentially most powerful signature of ASD will be found at the level of brain systems. Such “neural signatures” of ASD may serve as critical endophenotypes to facilitate the study of the pathophysiological mechanisms underlying this devastating and highly prevalent neurodevelopmental disorder."

The study authors' reference to the New Autism Spectrum Disorder as "devastating" and their stated intent to address the challenges presented by the heterogeneity of the disorder might lead one to think that some of the most devastated by ASD, those with currently defined Autistic Disorder and Intellectual Disability might be included as participants in the study.  Such was not the case, however, as participants were limited to those with average intelligence. Persons with Autistic Disorder and Intellectual Disability were intentionally excluded:

"As illustrated in Table 1, the three groups of participants were matched on chronological age and were of similar cognitive ability, all within the average range. Cognitive ability was assessed using either the Differential Ability Scale (DAS-II) (18) or the Wechsler Abbreviated Scale of Intelligence (WASI) (19)."

Undoubtedly there will be more and more studies of Autism Spectrum Disorders which will exclude subjects with autism and intellectual disability.  On a common sense basis I do not believe you can draw conclusions concerning this entire spectrum of disorders by excluding a major group, a group whose participants are severely affected.  If you don't study them you can't draw conclusions about them.

 Of course the professionals involved with the DSM and ICD revisions may have a smple solution - simply define the problem away.  By expanding autism in the DSM-IV to include those with Aspergers who are, by definition, not cognitively challenged, the APA reduced the numbers of those with autism and intellectual disability from the 75-80% range to approximately 40%. The DSM-5 may reduce the figure further by including sub-clinical, almost autistic groups, in the new Autism Spectrum Disorder and may simply define Autism Spectrum Disorder so as to exclude persons with autism and allegedly "co-morbid" conditions like Intellectual Disability.

In the meantime researchers like the Yale group are forging ahead studying the New ASD and drawing conclusions about the entire spectrum without studying those with ASD and Intellectual Disabilty:

In this study, we have characterized neural signatures of the state of having ASD, the underlying trait of vulnerability to develop ASD, and regions of compensatory activity that distinguish US from children with those with ASD and TD. Measurement of activity in the pSTS region allows us to subdivide the autism spectrum by severity. Our results identifying trait activity provide a possible neuroendophenotype ofASDand hold promise for future genetic research.


FADSS said...

My son has autism and Down Syndrome. I have rarely seen any studies including subjects with this dual diagnosis.

Unknown said...

Hello FADSS. I don't know what percentages of persons with autism disorders also have Down Syndrome.

Several credible authorities have estimated that 75-80 percent of persons with Autistic Disorder and 41-44% of all persons with any "autism spectrum" disorder have intellectual disabilities. One Italian study has concluded that there is a clear relationship between autism and intellectual disability.

If a study focuses on non intellectually disabled persons with autism that's fine as long as they don't state that the findings automatically apply to all persons on the Autism Spectrum when so many severely affected are excluded from their studies.

Socrates said...

Harold, there is the need to gain informed consent before experimenting on humans.

One does not use intellectually impaired children (or adults) for random speculative scientific research.

I can see little difference between say the sensory overload suffered by people like Mike and Titan and myself.

Such research may prove more valuable to children like your son, than you think.

J.Benson said...

FADDS- I have actually had a professional try to tell me individuals with Downs can't be autistic, if you can believe it. It's an area that needs significant study. Having worked with more than one with dual diagnoses, I am convinced it's key to understanding autism in general.