When Labels Fail: The Ongoing Debate Over Autism Rates

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers

Not a week goes by before there is a new article about the increase in the rates of autism and within these reports is a debate about what it means.  There are generally two camps, as I see it: those who believe better detection and a broadening of the definition of autism is at work and those who believe there are some unknown environmental factors in play.  While there is a genetic component to autism, I fall into the first camp.

Until the 1990’s, when the definition of autism was broadened, only the more involved children were labeled as having autism and the rest received various other labels-PDD, PDD/NOS, MR and an alphabet soup of other labels.  It was widely accepted that a label of autism also included some level of intellectual disability.  Now, only 1/3 of those who are labeled as having autism also have an intellectual disability.

There are lists even being developed of famous people and much speculation of others (Steve Jobs for example) who might have Asperger’s. What concerns me and should concern you is why are we obsessed with labels? I used to have a poster on my wall that said “Label jars. Not people.”  I think we should accept some natural variations of human behavior. That quirky kid from my elementary school who went to MIT would no doubt today be put somewhere on the autism spectrum and provided with social skills classes. Instead of being celebrated for who he is, he would be set apart and attempts would be made to fix him.

When we finally have societies where everyone is included and accepted for their uniqueness, I am hopeful that labels with only be on jars.

— Jo Ann Simons


1 Comment

Filed under Disabilities rights, Disabilities Trends, In the Media, Uncategorized

One response to “When Labels Fail: The Ongoing Debate Over Autism Rates

  1. Steven Passer

    While agree with your lovely thought about labels, I respectfully disagree with the camp that you are in. I am in the 2nd camp.

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