My Life With Asperger's

How to live a high-functioning life with Asperger's.

Are we autistic people shaping the public's view of autism in ways harmful to our cause?

The autism spectrum. Where is it headed?

Where is this autism spectrum of ours headed?

It's the time for New Year resolutions, 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.

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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.

John Elder Robison is the author of Look Me In The Eye: My Life With Asperger's, and Be Different, Adventures of a free-range Aspergian.

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