Asperger's Autism and PDD-NOS. . . Is there a difference?

Yesterday I listened to a very interesting talk by Catherine
Lord, one of the creators of the ADOS test.  ADOS is the "gold standard" in the world of autism
diagnosis, and she's a leading figure in the world of autism testing and
evaluation, so I jumped at the chance to hear her thoughts on where we're
headed in that regard.




People who receive an autism diagnosis are told they have
one of three conditions:  Autism,
Asperger's, or PDD-NOS.  The big
question is, who should be diagnosed with what?  Is there a coherent sense of classification, or is it merely
arbitrary or random?  She reviewed
the diagnostic data for several thousand spectrumites in an effort to determine
what caused a person to end up in one of those three categories.




To her surprise, after analyzing the data, she found the
principal predictive factor had nothing to do with the individual.  Looking at records from a number of
good university hospitals, she found places who called almost everyone
Asperger, and other places where everyone was PDD-NOS. There was no discernible
pattern of variation between individuals; they seemed to simply get different
diagnoses in different places.




Was there more to the story?




To answer that, she looked at other factors, like IQ.  For example, many people call
Asperger's "autism lite" or "high IQ autism.". Her review
of Asperger diagnoses at one Ivy League school bore that out, with their
Asperger kids having average IQ of 123. 
However, other doctors must see Asperger's differently, because a
Midwest clinic in the study has an average Asperger IQ of 85. 




She looked at quality of language in older kids and found
similar ambiguity.  Asperger's is supposed to distinguish autistic kids who don't have trouble speaking or understanding language.  That can be true at age three, but what happens when kids get older and talk more?  In the final
analysis she did not find any consistent measures of the individuals themselves
that led to one label or the other being applied.




In my opinion, those findings support the argument that
there is no consistent  standard
that sets the three descriptive terms for autisms apart.  A difference at one point becomes
invisible at another.  For example,
you could say four year old Mike does not talk so he's autistic and Jimmy talks
up a storm so he's Aspergers.  But
what happens when both kids are ten and they look and sound the same?  Were the differences justified?  What purpose might they serve by their
difference?




Her findings made one more strong argument for combining all
autism diagnoses under the heading of Autism Spectrum Disorder, with a
described range of disability or affect.




That's the way things seem to be
headed for the next DSM. 




At the same time, Dr. Lord expressed concern that many
people have a strong personal investment in one diagnostic name or the other,
and they should be able to keep using the different terms.




Stay tuned for more tomorrow,
from IMFAR 2011




John Elder Robison

Author of Be Different, 2011

And Look Me in the Eye, 2007
(c) 2007-2011 John Elder Robison