A Word on Words

The words we choose create understanding, and in turn they build connections and lead to community. They are most people’s primary means of interacting with others in the world.

I’m a word nerd. I love language and the ways that different words can be used to convey precise meanings. I try to choose my words carefully and to remember that they represent me, my character, and my intellect.

For those reasons, I am changing some of the terminology I will use to describe Cheeks, his autism, and other autistics like him. It doesn’t come from a need to be politically correct, it’s about being both accurate and respectful in the way I use my words.

I will not say that Cheeks has “special needs.” Instead, I will say he is disabled. His needs are no different than anyone else’s needs. He has a need to be loved, educated, and understood. Nothing about that is special, it makes him exactly like everyone else. Describing him as having special needs is suggesting that his needs are outside the norm. He does however, have a communication, sensory and motor planning disability that requires support in order for him to fully access the world around him.

Perhaps just as importantly, having “special needs” does not provide him with any of the legal protections he may require in his lifetime. Being “disabled” does.

I will not say he, or any other autistic, is “nonverbal.” Instead, I will say he is unreliably speaking, while others may be nonspeaking or minimally speaking. The word “nonverbal” means to be without words. If Cheeks or anyone else is described as nonverbal, that means he has no capability of understanding language. Let’s say you had laryngitis and suddenly couldn’t speak. Does that mean you no longer understand when someone talks to you? Of course it doesn’t.

That’s because the part of the brain that controls speech production (Broca’s area) and the part of the brain that allows us to comprehend speech (Wernicke’s area) are separate, and represent two completely different neural functions. They aren’t even the same type of function, one is motor and the other is cognitive. Calling someone “nonverbal” because they can’t speak is both incorrect and derogatory. Remember when we called people who could neither hear nor speak “deaf and dumb?” That’s similar to saying nonverbal.

I will not say his autism is low- or high-functioning, or describe his autism with words such as severe, aggressive, or disruptive. Instead, I will discuss him only as the complex, multifaceted individual that he is, and I will use respectful language.

I’ve written more about high- and low-functioning here. It reduces a complex individual to a summation of how well they meet an arbitrary standard of normalcy. Even being placed at the perceived high end of that yardstick still means you are being publicly offered up for the world to assign a label to your capabilities.

There is also nothing about the adjectives above that someone would want used to describe their personality. Better to use the terms significant, complex, notable, compelling, meaningful, etc. The word used should be one that doesn’t insult him.

I will not call him “a person with autism”, I will say he is autistic. (For now.) This is another one I have discussed before, you can read that here. Some segments of the disability community do prefer person-first language, while others prefer identity-first. Mostly, the autism community leans toward identity-first, or “autistic person.” But any community is comprised of individuals with differing opinions, and so it’s not a universal preference. Ask, if you can, what someone prefers. One day, when Cheeks has more open communication, I will explain the difference to him and ask what he prefers.

And lastly, I will not condemn those who use the words that I won’t (mostly). It’s not my goal to tell anyone they are wrong with the words they choose. I’ve used all of these terms at one time or another, some recently. My goal is and has always been to educate, and to represent Cheeks in the world as accurately as possible. I say “mostly”, because Mama Bear sometimes shows up when Baby Bear is being inadvertently disparaged.

Language paints a picture, and it’s important to me that his picture is true and authentic. For now, I am both his advocate and his voice; so I have to get it right even more for his sake than for my own. And I believe that as the accepted language changes, so will the world’s perception of our autistic friends and family members.

 

 

 

Presume Competence

One of the most common questions I get about Cheeks is “does he understand____?”, and the answer is that I don’t know for sure. In theory he can talk and explain for himself, but in practice, speech is so difficult for him that he has learned to not depend on being understood. Therefore he often remains quiet when people interact with him. But we live in a highly verbal world, especially within the education system. As such, the measurement tools that are used to identify learning are flawed. Of course, that happens with neurotypical kids, too. So… what does he understand?

I attended an educational session this summer in which a newly minted Ph.D. presented the dissertation paper that earned her the degree. Part of her research depended on demonstrating to neurotypical kids how a child can be a competent learner and yet still be unable to comply with the way a test is presented. To do this, she administered an Australian intelligence test to her American students. (I have no idea if this test is authentic, but it demonstrates the point.)

Einstein
It’s likely that Einstein never said this. But the words are relevant anyway.

Why couldn’t they pass the test? It was presented in their native language and they were given whatever accommodations they needed in order to complete it. Because it was created with a particular audience in mind, and they were not that target audience. The same is true of tests created for a verbally-based educational system when given to non-verbal or semi-verbal students.

When Cheeks’ had his most recent intelligence testing done, he tested as having an IQ of around 70. That score is two standard deviations from the mean, which in layperson’s terms used to mean labels like moron, feeble-minded, or retarded. I am not making this up. The standard disclaimer language that I was presented when told of Cheeks’ score included the warning that his score was unlikely to change much in his lifetime. So that was fun.

But I do not believe it. I know there is a whole world locked in there, waiting to be released. I believe in his abilities not just because I’m his mother, but because I see evidence of it every single day. Have you ever had that dream where you are calling to someone who should be able to hear you, but for whatever reason they can’t? I think that is likely the world Cheeks lives within.

Every day, we are chasing down ways to allow him to be heard. Until then I will speak to him as the 9 year old he is, and presume until proven otherwise that he has the ability to understand. There is nothing wrong with his hearing, and I would be crushed to learn later in his life that he didn’t know why we were always talking down to him.

I understand why people talk to Cheeks as if he is a much younger child. And I appreciate their desire to connect with him. But please, don’t interpret his lack of appropriate responses to mean a corresponding lack of understanding.