Why Words Matter: Inside the Mind of Autism

An interesting article has been posted over at ShiftJournal.com by Amy Sequenzia, who has described herself as a non-speaking autistic and self advocate. In her post entitled "Non-speaking, ‘low-functioning,’" Amy takes issue with the stereotypes and labels that are often assigned to those with autism, particularly those who do not have the ability to speak. Her article begins as follows:

"I am autistic, non-speaking. I am also labeled “low-functioning”. This label is a pre-judgment based on what I cannot do. It makes people look at me with pity instead of trying to get to know me, listen to my ideas.

I am a self-advocate and I can type my thoughts. But, at the moment I show up with my communication device and an aide, my credibility, in the eyes of most neurotypical people, is diminished…"

The term "low-functioning" has become such a common part of the autism community’s vocabulary, it’s safe to say that only a handful have given thought to how its application can affect others. But as Amy demonstrates, word choice does matter and can often profoundly affect the very individuals we are professing to help.

I recall the first time another parent corrected me when I used the term "autistic child" when describing a little boy with autism. This mother pointed out that the proper description should be "a child with autism," because the person should always come before the disorder.

I remember at the time thinking this was just an overly-sensitive, politically correct observation. However, as the years have gone by, I’ve learned that it’s important how we describe individuals with autism because ultimately, those definitions are what shape the perceptions of the general public. And once stereotypes set in, they are almost impossible to undo. 

Case in point, Amy continues with the following:

"All the labels given to us only help to make myths seem like the reality. By classifying non-speaking autistic as low-functioning, one is lowering expectations for the autistic individual. He or she is not given a chance to express him/herself and maybe show hidden abilities."

I think many of us have much to learn from Amy and others like her. Those with autism are not some pitiable statistics to be discounted or marginalized, but rather brilliant, beautiful individuals who just happen to experience the world a little differently than most.

To read the entire article by Amy Sequenzia, click here.

4 Responses to Why Words Matter: Inside the Mind of Autism

  1. Bill says:

    I do not believe “low functioning” was created as a pejorative; it was created as the contrast to “high functioning” which is often associated with Asperger’s. If the Asperger’s label ends up being removed from the next DSM, the two function labels will take on even more currency.
    In light of the recent facial structure study which showed most autism spectrum children having unique facial proportions compared to neurotypical children, and the same study’s revelation that there was also a subtle but discernible facial proportion difference between classic autism and Asperger’s children, perhaps it is time to separate Asperger’s from classic autism, throw out the hi or low function labels and put Asperger’s back in the DSM. If the difference between classic autism and Asperger’s is fundamental and determined in utero, we should stop blurring the line between them.

  2. According to the ASD 40-44% of all persons with an Autism Spectrum Disorder have an intellectual disability. If you exclude those with Aspergers who, by diagnostic definition, do not have an intellectual disability what remains is what Dr. M. Yeargin-Allsopp of the CDC described as classic autism’s “vast majority” who are also intellectually disabled. Intellectual disability relates directly to functioning level. If you are not Intellectually Disabled or low functioning great. But many are.

  3. The first line in my previous comment contains an error and should read “According to the CDC 40-44% of all persons with an Autism Spectrum Disorder have an intellectual disability.”

  4. Denise says:

    I am an autistic not a person with “autism” Do I get a vote as to how I am addressed ? I have a friend who is a person with dark pigment in their skin….are they a person with black ? I have very little pigment….am I a person with white ? Some will say that skin color, unlike cognitive wiring is not a disability and I hope they understand that for me, that is my point . My autism is not a disability but a difference of perception and the thing that is disabling about it is the same that can be disabling about having different levels of pigmentation in comparison with the dominant culture….that the dominant culture is the one that creates the physical environment that best suits their own skills, tastes and strengths . They are also the ones to give value to certain traits and devalues others .

    The interesting, and often over looked, aspect of the comment about the prevalence of intellectual disability in autistics is that those who are considered “ID” are the minority in spite of most peoples perception that autistics are intellectually disabled . The 8 traits of autism are NOT what makes it a disability but some people who may have intillectual disability may also share some autistic traits…(as do many people with no DX of Autism) .

    I hope that some day the amount of correct information about autism out ways the misinformation and lack of information about it . Before that can happen I believe that there will need to be a whole new paradigm shift which begins by seeing autism as a human difference and not the disability .

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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