Labels are easy, they’re shorthand for what we want to communicate and yet they often obscure what is really being said. (These are the things I think about when I’m away from my family for an extended period of time, as I have been, since coming out to Aspen because of work. All of this reflection will end in another four days, because the children and Richard will be joining me out here this Sunday – Hurray!)
We say things like – “oh he’s schizophrenic,” “she’s bi-polar,” “she’s anorexic,” “he’s an alcoholic” and the meaning gets conveyed and yet, is it? After all that’s not ALL the person is. It’s something they have been diagnosed with, perhaps are struggling with, it’s a medical term, but it does not encompass who and what that person is in their entirety. When I hear someone describe another person as “autistic” I understand that person has been given a diagnosis of autism, but I don’t presume to know much more about that person. For example, I won’t know if this particular person diagnosed with autism can speak, read or write, they may have other issues, physical issues, other diagnoses added on to further illuminate, but the labels begin to overwhelm the actual person. I can’t know from the various labels whether the person has a sense of humor, if they have terrific eye contact or no eye contact, whether they cringe at physical contact or whether they seek it. The word “autistic” does not give me any clues as to whether the person is gregarious or shy, enjoys reading about painting or knows everything there is to know about quantum physics. The label does not tell me about the person’s passions, dreams, desires or talents. If I knew nothing about autism, having someone described to me as such might cause me to presume a great many things. Things I would be completely wrong in assuming.
In my daughter, Emma’s case, the labels are almost always unhelpful. I use them, it is shorthand after all, but they reduce her to something that doesn’t help people know her or understand her. For example, Emma has a terrific sense of humor, she loves playing jokes, being silly, making faces, repeating things in a way that will guarantee a laugh. When I use the word autism, or say to someone – she has autism – it’s the best I can do in a short period of time. It’s a little like when we say to one another – “How are you today?” The answer we all know to give is: “I’m fine, how are you.” Even if we aren’t fine. Can you imagine if you asked that seemingly innocuous question and the response was: “You better take a seat, this may take some time.”
I avoid using the word “autistic” because it implies more to me, than saying “she has autism.” It’s a subtle distinction, but to me, anyway, it’s there. Emma is so much more than a diagnosis. She is pure Emma. And Emma is complex, just like the rest of us. She is funny, a talented singer with a beautiful voice, she has a personality and temperament that are unique to her. She loves to run and swim and swing her arms and zip around on her scooter. She enjoys being read to, sung to, and any game that involves running. I dislike that her diagnosis takes up so much room in people’s minds. I do not like that when people hear she’s “autistic” they make assumptions about her, almost always incorrect.
Can you imagine what the world would be like, if all of us took all these labels, our shorthand for communicating and tossed them out the window? We would live in a world, which would make prejudice and judgements much more difficult to come by. We would have to live in the discomfort of not knowing. But what a great way to live!
Emma – 13 months – eating a brownie.
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com