Thursday, December 26, 2013

Splitting the Spectrum






Recent changes in how autism is diagnosed have supposedly removed ambiguity about what autism is and what it isn't.  However, this to the benefit of clinicians (people diagnosing and treating autism), and not so much for the benefit of people impacted by autism and for the general public.

The previously separate autism spectrum disorders - autism, PDD-NOS, and Asperger Syndrome have been folded into "Autism Spectrum Disorder", or ASD.  Most people still use the term "autism" and "ASD" interchangeably, even though autism used to refer to classic autism, as defined by Leo Kanner.

So perhaps this made it easier for clinicians to diagnose autism... but it has made it harder for people living with it each day to get the supports they need.  The spectrum has become so wide it is meaningless, from the very capable to the very disabled.

People like Suzanne Wright of Autism Speaks who work to advocate for those with autism (and admittedly at the severe more disabled end of the spectrum) are slammed by many people who have autism (as it is defined now). 

The gulf has become too wide.  Parents with high functioning children towards the old Asperger Syndrome definition may be fretting about Johnny's difficulty making friends, whereas parents of low functioning children may be fretting about when their kid is going to get too big for them to handle when they become aggressive.  These two ends of the spectrum are so different - they present with such different problems that they are incompatible. 

Some people may argue that the low functioning end of the spectrum includes those with intellectual disability, and that is true.  But the high functioning end includes those with anxiety disorders and other problems too.

We can't keep classifying the low and high ends of the spectrum using cognitive ability as our measuring stick.  Intelligence in autism is very difficult to measure due to scatter in ability.  Instead of trying to roll up autism into one package with co-morbid conditions, why not recognize the reality that those who have huge difficulties with day to day living just don't have the same "autism" as those who do not?

I would like to see two autism definitions, perhaps "autism" and "Asperger Syndrome".  The key difference between these two diagnoses should be level of functioning across all areas outside of just social skills and social communication, IQ being irrelevant (I'd argue a person who has a high IQ but still cannot wipe their butt at age 18 is still as disabled as someone with a low IQ).

The high functioning "autism is a difference" crowd can go on with their mantra but under a different name.  Autism Speaks can "speak" for the low functioning crowd who have very severe difficulties living day to day.  There's just not enough in common to keep the spectrum together.  It's time to split it up and recognize the reality of what autism is.





2 comments:

  1. You make a compelling argument. It is so unfortunate that discussions about how to best help and support people with "ASD" degenerate into arguments and name calling. I think that you're right that using the same name for such a diverse set of conditions is at the root of the problem.

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  2. I agree with Sara and you. It's tough, because labels are helpful to some degree, but when they are used to encapsulate such a broad spectrum of abilities and challenges, they seem to fail to accomplish their own goals: to identify needs and seek to meet them.

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