By Lance McLemore, PRC-Saltillo Blogger
It would have probably been better to write this for Autism Awareness Month, but as usual, my timing is off. I find that it’s better to write out an idea as soon as I have it. I would like to talk about the language surrounding autism and autistic people. Many people believe that language simply describes reality. However, some philosophers believe that reality is made of words. Words are not just a passive thing, but rather, they are participating in the unfolding of reality. They are like the scaffolding upon which reality is constructed. If you change the words, then you change the reality. I’m not sure if I’m fully committed to such a view, but at the very least, words do color our perception. How does language color the way we see autism and autistic individuals?
I have long been aware that there is an abundance of specialized language and clinical jargon around autism and autistic people. I suppose it’s inevitable; the same observation could be made for just about any disability, illness, disorder, disease, or syndrome. In some contexts, this sort of language is useful and maybe even necessary. However, this language has gone far beyond the limited context where it’s arguably useful. It seems to have spread like a mental virus corrupting people’s perception of autistic people. There are a few examples I would like to give to illustrate my point.
I’ve had many occasions to hear men talking incessantly about football or some other sport. I know I’m supposed to act like I’m interested or at least act like I’m not dying of boredom, but I’m quite sure I don’t fool anybody. I’m sure most people would think to themselves, “that guy certainly loves his football, or that guy is really passionate about football.” Let’s change this scenario a little. Instead of a man talking incessantly about football, what if it’s an autistic teenage boy talking incessantly about frogs in the Amazon rainforest? In that case, most people don’t think about their interest as a hobby or passion. They start attaching medicalized language to their experience. Instead of “hobby” or “passion,” people use words and terms like “obsession,” “perseveration,” “repetitive and restrictive interest,” “special interest,” “inflexible,” “abnormal,” etc. The difference between the football fan and our budding herpetologist seems quite small to me. Why is the football fan considered socially appropriate, but an autistic person is not allowed to talk much about frogs or anything else they care about without having it be pathologized? When I was younger, I was much more open about the things that I was interested in. As I’ve gotten older, I’m much more reserved about sharing my interests with anyone. I think as I’ve become more aware of the hostile attitude that people have towards my interests, I definitely withhold a lot. Some of the blame for that must go onto the bigoted attitude inspired in part by the medicalized language that is directed at me and others like me.
Another word I’m sick of hearing is “therapy.” It seems like every activity that an autistic person does, no matter how mundane, is considered a therapy. When an average child goes to ride a horse, they’re just riding a horse. When an autistic child goes to ride a horse, they call it therapy (and they often charge an outrageous amount of money for it too). It’s exactly the same activity for both children, but for an autistic person, their entire existence is seen through a medical lens. An otherwise fun experience is tainted by blunt, course, and sterile language saturated with value judgments. An autistic person is already subjected to quite a lot of therapy: speech therapy, occupational therapy, ABA, and so on. Don’t let all this therapy metastasize to every other part of our lives.
“Lack of empathy” is a phrase I’ve heard quite a lot to describe autistic people. Many years ago, autism was considered to be a form of psychopathy; this belief that we lack empathy is quite persistent, and I think it’s complete nonsense. I think that this particular phrase is the most harmful, because if you can’t empathize, you’re not a full human being. It gives other people the impression that we are totally self-centered, unfeeling, uncaring, monsters. I wonder if this attitude could explain the abusive interventions to which many of us are subjected: isolation, withholding of food, restraints, electric shocks, etc. We don’t have any feelings; we can’t be hurt; we’re not full human beings, so why not do these things to us? And if it should result in our deaths, it’s no big deal; it’s not like a real person has been lost.
Another word I hear a lot is “stimming,” which can be defined as follows: the repetitive performance of certain physical movements or vocalizations, as a form of behavior by persons with autism or other neurodevelopmental conditions. I’m sure everyone is familiar with autistic people doing movements like hand flapping and rocking. These movements are done to help calm the person or help them focus. I’m annoyed by the use of this word, because everyone, autistic or not, does what could be considered stimming. I’ve seen non-autistic people chewing on pens and pencils, and I think that’s a type of stimming. However, since they’re not autistic, it will never be labelled with that pathological term.
All this pathological language reminds autistic people that they’re not like everyone else, everyone sees them as a sick patient, or a mental defective who has to be treated constantly. If it doesn’t saturate our own thinking, it certainly does for many people around us. This pathological language can cause other people to see us as sick patients rather than human beings with unique challenges trying to have a fulfilling life. Our lives are challenging enough already, so we don’t need to be limited and boxed in by your inhuman medical and therapeutic language.
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Communicators In Action - aac, language, communication, medical, disability, autism