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Autism Awareness: How Do People with Autism Want to Be Seen?

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Understanding of autism has come a long way since doctors began researching it in the 1940s. However, it’s still easier to get a job without autism; there are still schools that refuse needed accommodations; and there are still too few changemakers who’ve asked anyone with autism for their input. And, sad but true, some of the worst offenders have been those trying to help with autism-related problems.

How do people with autism (or “autistic people,” which many prefer) really want to be seen?

Pet Peeves

Let’s first clarify how we don’t want to be seen. The most disliked approaches are akin to those resented by any “minority” group:

  • Being pitied or patronized
  • Being pressured to conform to neurotypical standards—especially with implications of, “You’re just being uncooperative”
  • Having requests for support/accommodations brushed off
  • Assumptions that verbal-communications disability equals inability to understand anything (including what others say about you in your hearing)
  • Media highlighting alleged “risk factors” for having a child with autism (as though neurodiversity were some terrible disease)
  • Being called an “inspiration” when you achieve something (as though no one really expects much of autistic people)

If there’s one thing to remember when dealing with any “difference” or disability, it’s to always allow people their full human dignity—including full right to have their perspectives heard. Partly for that reason, the current designation of April as “Autism Awareness Month” is giving way to “Autism Acceptance Month”: people don’t just want to be “recognized,” they want to be accepted as full participants in every area of society. Especially areas that affect them personally.

What Did I Do Wrong?

Of course, there are people who have autism and prefer “Awareness Month,” or who propose alternate names such as “Autism Advancement Month,” or who resent the whole idea of a special month because they consider it a form of patronizing by neurotypicals. “Predominant” opinions can change quickly these days. And the risk of innocently offending someone is all too real, as the following account illustrates:

I have an old “autism” puzzle piece on my car’s rear window, a gift from a family in a special needs karate class I taught, one of their child’s first activities other than therapy and a really positive experience for him and his family. Recently, I was loading groceries into my trunk at H-E-B when this woman came out of nowhere and began yelling about how insensitive I was to have that “symbol of oppression” on my car. I was stunned. I didn’t even have time to try to explain where the sticker came from, before she stormed off as quickly as she appeared.

The puzzle piece is one symbol (another is the blue light) that was intended to represent support for families living with autism, but is often associated with organizations whose non-autistic leadership treated autism as something to be overcome or even “cured.” What much of society has yet to understand is that people with autism rarely consider it a liability. It’s a piece of their identity, and they resent having it regarded as inherently negative.

Not Just a Single Entity

“If you’ve met one person with autism, you’ve met one person with autism.”          –Dr. Stephen Shore

There’s no guaranteed way to avoid offense, especially on points where opinions vary within the autism demographic itself. It helps, though, to remember that everyone is an individual with individual tastes and preferences. One in 36 people, including around 5.5 million adults, have autism in the U.S.—and each one is as distinct from all the others as is anyone in any demographic group. Never regard anyone as simply part of a homogenous unit.

A few additional tips:

  • Don’t rely on non-autistic people—not even parents or other family members—for accurate pictures of what autism is “really” like. No one can truly speak for anyone else’s experience.
  • Make the effort to actually meet and learn from individuals with autism. If their verbal skills are limited, let them decide how to communicate.
  • Respect individual preferences on symbols and forms of address.
  • If you accidentally offend anyone, apologize (without any show of defensiveness) and thank them for teaching you something valuable.

P.S. If you’d like to display a neutral symbol of autism solidarity, one of the more popular is an infinity sign in rainbow colors.

For More Information

Autism Acceptance Month is underway. Here’s why the name is important.” (USA Today, April 2, 2022)

Autism Acceptance Month vs. Autism Awareness Month: Which Is Correct?” (Autism Parenting Magazine, April 6, 2022)

What Is Neurodiversity?” (Harvard Health Publishing, November 23, 2021)

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