Where is this autism spectrum of ours headed?




It's the time for New Year resolution, and mine is that we
autistic individuals rethink how we present autism to the public.




By now you've likely read that the latest version of the DSM
guide proposes to merge Asperger's, PDD-NOS, and all other autistic conditions
into one diagnostic category, to be called Autism Spectrum Disorder.  




A number of parents and advocates for people with very
severe autistic impairment have criticized that move, saying it will render
people with both severe autism and intellectual disability almost invisible.




Some even feel the traditional autism diagnosis has been
"taken away from them," to be replaced by a broader, more Asperger-like
diagnosis. 




I agree with those sentiments.




Thirty years ago, the largest percentage of kids diagnosed
with autism also had some degree of intellectual disability and were by any
standard, near 100% disabled.  Today, the
majority of kids diagnosed with autism do not have intellectual disability and
most will grow up to live and work independently.   That's not because the number of kids with
intellectual disability has dropped; it's because the autism diagnosis is
applied to a much broader swath of population. 





To understand how this has happened one need only look at
how the phrases used in the definition are interpreted.  For example, "Substantial communication
impairment," was at one time a euphemism for, "unable to have a conversation."  Today it can mean that, or it can mean, "has
difficulty reading body language and interpreting unspoken messages."  The range of meaning of those three simple
words has expanded tremendously.




To a lay person, an autistic person who cannot hold a normal
conversation presents totally differently from one who is highly articulate,
but misses subtle social cues and facial expressions.




Yet that is the reality of the autism spectrum as we know it
today.  We have a large and growing
population of very different individuals, under one very broad diagnostic
umbrella.




As the autism spectrum expands to encompass more people with
progressively greater verbal and written communication skills, those
individuals have begun speaking for themselves. 
By doing so, they are altering the public's perception of what or who an
autistic person is or may become.




This reshaping of perception has moved the public's concept
of autism higher on the IQ range, with more and more people seeing "autism" as
a euphemism for "eccentric geek," or, "genius," which is most assuredly is
not.  Popular television shows like
Parenthood and Big Bang Theory reinforce that trend.




At the same time, the population of people with intellectual
disability and severe autistic impairment remains fairly constant.  Those individuals are not generally able to
speak for themselves.  They are most
often out of the public eye, and they may rightly feel they are rendered nearly
invisible by this change in perception. 




What might we do about this?




For starters, all of us who occupy the more verbal and
articulate end of the autism spectrum can keep in mind that it is a spectrum,
and some of our fellow spectrumites are much more verbally challenged than
we. 




Every time a person with milder autism speaks of his own
challenges, those words add to the body of information the public uses to define
autism.  The more we move that balance
from disability toward eccentricity, the more we harm our cause, albeit
unwittingly and with the best of intentions.




When self-advocates' autism talk shifts primarily to rights
and entitlement, the need for new therapies, treatments, and services is
forgotten.  When we focus on entitlement,
we create the impression that our problems can be solved by legislative action,
much like the civil rights laws did in the sixties.




Entitlement and equality are great ideals, but they do not
remediate disability.   We must not lose
sight of that fact, when building autism awareness.  We are not equal people fighting for equal treatment.  We are disadvantaged people fighting for
remediation of our disability, and the opportunity to be treated fairly by
society.  That is a very different
proposition.




Autistic brain differences may indeed be a component of
creative genius, but they are more often a contributor to significant
disability.  We need to balance our own
desire to "think positive about our potential" with the need to keep the public
more in touch with current reality and the services we so desperately need.




The autism spectrum still includes a large population –
several hundred thousand in the US alone – who currently have no realistic hope
of substantial employment.  That is a
tragedy.  And it's not because they are
discriminated against.  It's because they
are disabled.  Not only that, they are
disabled for reasons we don't understand and in ways we don't know how to fix.




I suggest that is the thing we need to fight for the most,
as we build autism awareness.  We need
help remediating the many, varied, and often profound disabilities that touch
those of us with autism.  Only then can
many of us fully integrate with society in the way we all desire.




For this New Year, I wish for all of us to keep our more
challenged brothers and sisters in mind whenever we discuss autism with the
public.  It's great to be upbeat, but for
many, autism remains a crippling disability. 
The fact that some of us emerge from disability as an adult does not
make the challenges faced by others who do not any less real or meaningful.




If we are to be a truly great society, we must aspire to a
great quality of life for all, and that means those of us who cannot speak for
themselves must not be forgotten in that quest.
(c) 2007-2011 John Elder Robison