Please Stop Using the Word "Challenges": An Open Letter

Dear Well-Meaning but Misguided Professional Allies,

Could you please stop using the word "challenges" when describing the struggles, turmoil, and often pure hell that autistic people go through? It's really, really irritating. When you write articles about how it's "challenging" for autistic kids to make and keep friends or "challenging" for autistic adults to find and keep jobs, you are missing the mark. I know you mean well, but when you use such words I strongly suspect that you don't appreciate the reality of living on the autism spectrum. I also suspect that it is your way of being "sensitive" and "politically correct", that you are afraid of offending us by using more direct and honest terms. But all it does is undermine and minimize our realities and ultimately fail to educate the general population. You are using euphemisms, which I absolutely HATE.

Why do I hate euphemisms? Ultimately, euphemisms are an inaccurate representation of the reality that they are attempting to address. It also has an undertone of denial. For example, the euphemism "passed away". Okay, I can understand using "passed away" when a 90-year-old dies in their sleep, but using "passed away" when someone is shot and killed with an AR-15 in a school shooting or falls off a cliff while hiking the Grand Canyon, is abhorrent. The school shooting victim was MURDERED. The person who fell off the cliff in the Grand Canyon DIED. This over-the-top, euphemistic language perpetuates a culture that is in denial about death, but that's another discussion altogether.

Now that you have a solid example of why I don't like euphemisms, let's talk about "challenges" and why its usage when describing autistic people's lives is intellectually dishonest. First of all, a "challenge" describes something positive. Doing a puzzle is a challenge. Taking an advanced-placement calculus class is a challenge. Hell, even climbing a mountain is a challenge. It is something the person is choosing to do to improve their brains, physical strength, and so forth-- and they can back out at any time if the task proves too difficult.

Saying that an autistic person is "challenged" when describing the tortuous attempts to accomplish the necessary day-to-day tasks for social and financial survival that the neurotypical world takes for granted is a completely inaccurate assessment of what many of us go through. Nobody would dare tell a person in a wheelchair who falls down a flight of stairs because they weren't provided a wheelchair ramp that entering the building was "challenging" for them. Likewise, you shouldn't describe a bullied autistic child's repeated failures to make and keep friends "challenging". And an autistic adult with a Master's degree who is only able to obtain and keep $12/hour data entry jobs is not someone who finds obtaining employment "challenging". In these two examples, these people are often tormented and tortured by these realities, which are often because the neurotypical world at large does not understand autism and in many cases can't be bothered to do so. Even in 2018, autistic kids are often still told that they bring the bullying upon themselves, and autistic adults who can't find rewarding work are often told that they're "not trying hard enough." And let's not forget how often people tell us that we are "making excuses".

These days I generally make friends with ease (though my close friends are few), and after fourteen years I finally have a rewarding job as a graphic artist. On May 30th, it'll have been a year since I've had this job. And yes, I said fourteen YEARS. Not months, YEARS. I spent those years going back to school-- I went back TWICE-- only to hit the same brick walls as I had after finishing my undergraduate degree in 2003 as an autistic person in a post-9/11 New York City economy. In one case, after going back to school for library science, I was fired from two children's librarian jobs due to lack of understanding among my employers and the parents. In the second case, I took a web development immersive, only to discover that I have non-verbal learning disability which makes things like programming overwhelmingly difficult for me to learn (so much for the stereotype that autistic people are programming geniuses). I wouldn't dream of describing these fourteen years as "challenging". I'd describe them as difficult, frustrating, torturous, and sometimes pure hell. If you think that "challenging" is the appropriate word to describe these experiences, then you simply don't get it.

I am not trying to enforce prescriptive language-- I hate that as well. What I am asking you to do is to raise your consciousness. Think about what words you are using and why. Don't patronize us. And when in doubt, ASK.

Regards,

Julie