Strap in for this one is a bit of a rant . . .

Words have power. They can lift you up, tear you down or mean nothing at all. I was examining the power of words in myself today while reading articles about therapies for the Autism Spectrum. I became very angry at certain points while reading them, and was compelled to check in with myself by asking, “What’s that about Bri? Why is this so upsetting?”

As I read, I examined which words or phrases set me off.  The first one was “therapy.” Therapy, of course, has the stigma in the general public of being for crazy people. However, when used in the context of physical therapy or occupational therapy it serves a different purpose and doesn’t carry the same stigma.

Here’s where it gets sticky. When someone says their child is getting physical or occupational therapy for their Autism, the line is crossed into the area of stigma again. Autism is neurological and manifests, predominantly, in how a child engages the world, based upon their experience of the world. An experience that is personal, very intense, very real and very genuine for the person living the experience of Autism.

Now, when you introduce the need for therapy, you immediately pathologize that experience. You deem it to be a disordered experience. I’m not demonizing the desire to help your child, my point is the premise upon which help is offered. A premise in which one seeks to fix a “damaged” child, instead of raising a child to solve the unique problems of their life without believing that who they are is part of the problem. Stay with me here.

Consider this example, a person expresses a perception and the person’s perception is dismissed with a statement such as “That’s because you’re a man.” This is a statement that connects a person’s perception and experience with an essential part of who they are and dismisses that perception, judgmentally, as a result.

Here’s where I enter the fray of controversy.  I want to say right now that I have no interest in a discussion about the following terms, other than what I’m going to say here. Agreed? Okay, here goes - the words “cure” and “recovery” mean success for one group of people, while for some passionate advocates in the Spectrum community, those words are a symbol of the failure to educate the public on the basic humanity and the individuality of members of the Spectrum community. In short, words have power. Why?

They have power because they, ultimately, convey the meaning we assign to absolutely everything we experience. As I read the article about the therapies for controlling anxiety, eliminating anxiety and the slippery slope the article took in it’s claim of reversing Autistic “symptoms.” Here we go again, another word that triggered me. My association with the word “symptoms” are things like a runny nose, burning during urination, vomiting and so on. I shutter at the suggestion that the anxiety I feel, which I relate to my personal experience of the world is a “symptom.” This, again, pathologizes my very personal experience of the world.

I suspect some of you are saying, “For crying out loud, Brian! Stop being so sensitive.” I admit, I am very sensitive when it comes to language. As sensitive as someone with dark skin might be for being called a racial slur based on that color. Because it isn’t just about the word. When you call someone the “n” word, someone a “retard” or say someone needs “therapy” and “intervention,” you speak volumes about where you think that person is in relationship to yourself.

Whether you’re conscious of it or not, there is judgment in calling someone high functioning or low functioning. You are making a judgment about who a person is, and who that person can be. Far too often I have seen such words result in the decision that a person is beyond help, or in no need of help at all. Holy crap! To completely give up on a person, because of a unilateral judgment that a person isn’t worth your time, is just as bad as denying help to someone who has the courage to ask for it.

The bottom line here is this, I became angry reading these articles because of what the words I read mean to me and the goals the author of the article stated were important to have when working with those on the spectrum. Goals of “reversing” or “eliminating” or “recovering.”

I’ve heard from those who say that being “Autistic” is who they are, and is as inseparable from themselves as their gender. Imagine responding well to someone who wants to “eliminate” or “reverse” who you believe yourself to be. Others say they “have Autism” and see it more as a part of themselves that need not be used to define them or have considered in how you relate to them. There are some who, when referred to as “disabled” say, “DON’T CALL ME THAT! I’m differently abled.”

When it comes to different words and different meanings, words that empower one group will offend another. We run into the unwinnable scenario of choosing our words wisely and still pissing people off. So what do we do now?

Do we say, “Well, you can’t please everyone?”  Do we realize, for the benefit of meaningful dialogue, that what we mean when we use a specific word ISN’T what the word actually means?  It is instead, what it means to us. When we realize that, it is easier to see things in a way that doesn’t require you to rise up and chastise the person(s) you believe deliberately offended you, or that should have know you would be offended. How the hell would they know how’d you respond? They wouldn’t.

Instead, own your meaning and, therefore, your response. It gives you an opportunity to ask, “What does that mean to you?” Then, you can share what it means for you.

What words like “therapy,” “cure” and “recover” mean to me is that my sons and I aren’t good enough until we’re like the person who is defining such terms. They hurt each time I hear them, because of what they mean to me and my concern about how such perceptions prevent us from being valued, unless we’re “cured.”

However, for the person using those words, they may not mean that their child isn’t good enough, but instead feel that without certain challenges, their child will have a better chance of making it in the world without being criticized and victimized for their vulnerabilities.

So, how do we resolve this disconnect? How do we bridge the gap? There are those who mean well, and want therapies, interventions and cures. They send me emails asking, “But don’t you think you’d be happier without Asperger’s? Read how this therapy can help you.” So many spectrumites become used to help being offered in the form of a therapy or accommodation in service of changing who they are, that accepting any form of help comes to mean an admission of a disability, accepting themselves as the problem.

Words have so much power. In our community they, unfortunately, serve to divide us more often than uniting us. The solution isn’t in being offended or getting angry at each other for the words we use. The solution is in discussing what the words mean to each us. I, for one, don’t want to be cured, but I do want help. I don’t want therapy, but I do want guidance. It isn’t just semantics that differentiates these terms, it is also meaning.

I want for myself and my three young spectrumites what all parents want - a life with meaning. My final question is, can we find a middle ground? If so, what would that mean to you?

Please share your thoughts below.

Photo Credit ◤alxck via Flikr