The “D” Word

hazmat

Hazmat is ready!

A couple weeks ago, a couple news agencies earned some Internet ire over their use of the term disease when referring to autism spectrum disorders. (See here for one example that has been since updated to remove the language.) Immediately, I saw my Twitter feed fill up with individuals decrying use of the term in reference to autism, but, objectively speaking, is the criticism justified?

Just the Facts

Following the highly scientific method of asking Google to define disease for me brought up the following definition:

  1. a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.
  2. a particular quality, habit, or disposition regarded as adversely affecting a person or group of people.

Furthermore, Wikipedia’s entry on disease says the following (emphasis mine):

In humans, “disease” is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, or death to the person afflicted, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes, infections, isolated symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts and for other purposes these may be considered distinguishable categories. Diseases usually affect people not only physically, but also emotionally, as contracting and living with many diseases can alter one’s perspective on life, and one’s personality.

By these standards, an autism spectrum disorder does, in fact, qualify as a disease, and it is technically correct for a news source to use that word. However, once you move past the sterile definitions, a whole set of emotions come into play.

Stigma Versus Awareness

The challenge with classifying autism thusly is that it is a spectrum disorder with a wide variety of symptoms and related severity. The term disease infers the need for prevention or a cure, and I am confident that many individuals and families enduring through the difficulties associated with more severe autism diagnoses are comfortable with that assumption. These parents just want their child to talk; they want him or her stop self-harming; they want to know their child will be a healthy and functioning adult. They want a cure and justifiably so.

On the other end, you have a population of individuals who have grown up with and see autism as intrinsic to their or their child’s identity. It is as important a part of who they are as your race, faith, or sexual orientation may be to you. To this population, the idea that they need to be fixed is offensive, is borderline eugenics. To take away the autism would be to take away something that makes them uniquely them. This is where I am and where my personal sympathies lie.

From this perspective, the term disease conveys stigma and blocks true awareness and acceptance of neurodiversity. I can’t accept you for who you are or do my best to accommodate your individual needs if I see you as fundamentally wrong in some way. That’s what gets communicated when we call autism a disease, regardless of the actual intention.

Even the CDC careful avoids the word on their website when referring to autism:

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

The Takeaway

So should you use the term disease when referring to autism? While autism technically fits the description, I’d say using the word creates more walls than needed. When I heard my local radio station talk about the CDC’s findings and use the word disease, it bothered me a little — not enough to say anything, though. It’s just a word I wouldn’t use.

I’d recommend the same for anyone who writes or speaks about autism spectrum disorders. Disease alienates and stigmatizes. It may be an unintentional side effect, but it’s still there. There are better words to use, especially if we want to keep conversations and minds open as we continue to understand and discuss the diversity of needs and strategies in and for the autism community.

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5 thoughts on “The “D” Word

  1. Reblogged this on lovingeveryleaf and commented:
    It is not always about what is technically correct, but more about what will better promote understanding.

    Sorry, Robert, but this post is only from my second favorite aspie. My very favorite aspie turns twelve this month, and as frustrated as I get at times, I would never “fix” his uniqueness. I have been blessed with a gem, a treasure.

    1. Though research is ongoing for external factors contributing to autism rates, nothing conclusive has been published. Right now, the only certain cause of autism is genetic inheritance.

  2. Hi, I am the father of a 23 year old son who is severely autistic. His name is Micah. I have written a book about being a single father raising a son with autsm, and his twin brothers. A number of publishers have shown interest but do not think I have a strong platform to promote the book. One thing they want is for my blog to have more followers. Please follow my blog and help me get “Micah’s Touch” published. Thank You, Darian http://www.darianburns.com

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