Autistic, or Person with Autism?

quotescover-JPG-46I swear to you, this post is not going to be about political correctness. While no one should knowingly be rude to another, I prefer to believe that most of us have the best of intentions at heart in our communications.

On that note, I’d like to discuss whether people who have a diagnosis on the autism spectrum should be called an “autistic person” or a “person with autism”. Most disability advocacy organizations recommend that anyone with a disability should be referred to as a person first, and reference made to the disability second. That’s called “person first” language. There’s a growing contingent within the autism community however, that prefers to be called “autistic person”, or simply “autistic”. That’s called “identity first” language. And it has become a hot button issue for many.

As a writer, I know that even slightly changing the phrasing of words can subtly alter their connotation—even if the words’ literal interpretation means the same thing. And people with differences are so often marginalized in our society, that it’s important to me to refer to them in a way that makes them feel respected. Allow me to explain the difference between person-first language and identity-first language within the autism community:


The Case for Person-First Language

A disability is only part of who a person is, it is not the whole person. Mentioning the disability first is using the disability to define someone, and placing who they are as an individual in a secondary position. A disability is nothing more than a medical diagnosis. You wouldn’t say “cancer person” or “wheelchair person”, you would say “person with cancer”, or “person in a wheelchair”. Mentioning a developmental disability should be handled the same way.


The Case for Identity-First Language

Autism is not something you can separate from the person, it is at the center of who a person is. While there are aspects of it that might be considered disabling, it is not a disease nor a physical limitation. Personality traits are typically used as adjectives, such as calling someone a generous person. Autism may be only one personality trait, but it’s a fundamental one. For example, you wouldn’t say “person with Catholicism” or “person with Americanism”, you would say Catholic or American.


You may notice that both explanations make a persuasive case for using that particular methodology. Both want to emphasize the value and worth of the person. So which is the right one to use? Unfortunately, there’s no clear answer for that. Self-advocates (the appropriate term for people with autism who have reached the developmental ability to speak for themselves) are split, but I personally believe that the majority is in favor of using “autistic”.

For myself, I make a conscious effort to use the terms interchangeably. And when Cheeks is able to understand the difference, assuming he cares one way or the other, I will follow his lead and use whichever he prefers. If you know him, then you know that the best thing to call him is by his name (“Cheeks”, “Ball of Smiles”, and “sheer awesomesauce” are also acceptable terms). And I am hopefully raising him to believe as I do, which is that even if people get their words wrong, they are generally doing so with good intentions.

5 thoughts on “Autistic, or Person with Autism?

  1. I smiled as I read this .. for a variety of reasons:
    – you, my grammar maven, make sense.
    – I variously define myself by my (various) abilities, disabilities, illness, etc.
    – Reading traditional Jewish or others’ prayer books, I change words to be gender neutral.

    Evan will define himself variously. Forever he will be Evan out loud. In my heart, forever ball of smiles.

    Thank you for opening this up for us all

    Like

  2. My dear Liz, Mom of AwesomeSauce McCheeks (that lucky young lad I just saw in photos on the best slide in the backyard) This is a very timely and topical subject in my life too, but for slightly different reasons: in our boot camp training this week for the MA Senior Care Foundation (on reducing the use of off-label use of antipsychotic meds for nursing home residents with Alzheimers or dementia) the creator and trainer of the program called OASIS talked about and shared hashtags with #personfirst language encouraging people to stop using words that end in -IC. It is definitely a shift, even as I was raised in a house where I wasn’t allowed to admit my parents were alcohol-ics (but yet I told other people all the time that’s what they were. It was a way to stand in my truth but not necessarily shame my parents to their face.) We also in our longer training sessions include an exercise on The Power of Labels, using 2 different labels (one positive, one not so much…) on lanyards to describe resident likes / dislikes, needs / abilities, and behaviors – which, the class teaches, are ALL forms of communication. Anyway, thank you for writing this – it helps me to be mindful of labels especially those that are person-first or to use those that the person prefers.

    Much love,
    Tami

    Like

    1. I believe very strongly that if anyone expresses a preference for their own label, it should be respected. I also loved what you wrote about behaviors being a form of communication! I saw that when my father was receiving dementia care, and I see it every day now for sure. Thanks for the comments, Tami!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s