DSM5 Autism Spectrum Disorder Has Arrived: Are Ari Ne'eman and John Elder Robison Still Autistic?

The DSM5 has been released and is now beginning to impact the world of autism.  Most discussion of the DSM5's New Autism Spectrum Disorder has ignored the effect of the language of mandatory criterion A which will act to exclude from autism diagnosis those with severe intellectual disability. Most of the discussion has focused on the potential exclusionary impact on those who would meet DSM-IV Asperger's criteria.  That being said the DSM5 autism team leaders have assured the high functioning end of the DSM-IV autism spectrum that those currently diagnosed with Asperger's or high functioning autism will not lose their diagnosis.  They will in effect be "grandfathered" in to the new autism spectrum. The answer to this commentary's title question is  therefore NO, Ne'eman and Robison, two very high functioning "Aspergians" will not lose their autism diagnoses.  

Although they will be grandfathered into the new DSM5 autism era will Ari Ne'eman and John Elder Robison and other  very, very high functioning "Aspergians" and "Autistics" remain as credible (in the eyes of mainstream media and Autism Speaks) spokespersons for persons at all points on the DSM5 autism spectrum?  Will persons who routinely appear in high profile media interviews before the Washington press gallery, New York magazines, CNN, CBC, BBC, run successful businesses, establish corporate entities, sit on the boards of directors, participate in IACC meetings  and in some cases raise families be able to speak on behalf of those who meet mandatory  Criterion D of the DSM5 New Autism Spectrum Disorder which states that the social communication and restrictive repetitive symptoms together limit and impair daily functioning?  Can the corporate directors of the ASAN corporate entity, including those with professional and academic backgrounds and some with families, claim to be limited and impaired in their daily functioning in any meaningful way? 

The real answer is that it doesn't matter if they would meet DSM5 autism criterion D.   Convenience is the reason that researchers have so often excluded those with severe autism and cognitive challenges from their studies.  Researchers, like the media, need very high functioning participants and interview subjects to do their autism focused work and earn their pay cheques. Robison and Ne'eman's careers as autism spokespersons/"self" advocates are safe.  Persons at the more severe end of the autism spectrum will remain invisible, hidden from sight, and excluded from research,  while high functioning "self" advocates speak on their behalf.

Criteria D in the DSM-5's New Autism Spectrum Disorder: Limited and Impaired Everyday Functioning

With the  January 26, 2011, revision of the  new Autism Spectrum Disorder category in the DSM-5 will some high functioning persons who currently have an Autism or Aspergers diagnosis  actually lose their autism diagnosis because they do not meet  criteria D,"limited and impaired daily functioning", of the 4 ASD mandatory criteria?

"299.00 Autistic Disorder                   Revised January 26, 2011

Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning."

Will some well known, self described, autism self advocates lose their autism diagnosis when the DSM-5 is published?  Can persons capable of raising a family, performing in rock bands,  driving land rovers, running  successful businesses, serving on the boards and committees of organizations such as ASAN, Autism Speaks and the IACC, graduating with university degrees, appearing before high appellate courts and government committees, publishing books, conducting research, and appearing in print and broadcast media interviews truly be considered to be limited and impaired in their everyday functioning? Will ANY members of the ASAN Board of Directors be considered to be limited and impaired in their everyday functioning?

Look for some intense reaction to the limited and impaired everyday functioning requirement.  Do not be surprised to see a high pressure campaign to eliminate criteria D.