Labels are useful. They're shorthand for what we want to communicate and yet, they often obscure what is really being said. We say things like, "oh, he's schizophrenic," "she's bipolar," "he's an alcoholic," "she's anorexic," "he's blind" and the meaning seems to get conveyed, but does it? After all, that's not all the person is. It's something they have been diagnosed with, perhaps 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 them. For example, I won't know if this particular person diagnosed with autism can speak, read or write. They may have other issues, physical impairments or other diagnoses added. These may 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 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. Emma has a terrific sense of humor, she loves playing jokes, being silly and making faces. When I use the word "autism" -- or say to someone she has autism -- it's the best I can do in a short time period. It's a little like when we say to one another: "How are you?" The answer we all have been taught is: I"m fine, thank you. 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 than saying, "Emma has been diagnosed with 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 near perfect pitch and a beautiful voice. She loves an audience and has a personality and temperament that are unique to her. She loves to run and swim and zip around on her scooter. She enjoys being read to, sung to, danced with and any game that involves bouncing, hiding, shouting and laughing. I dislike that her diagnosis takes up so much room in people's minds, limiting her to a single, loaded word. 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 these labels, our shorthand for communicating, and tossed them out the window? We would live in a world where prejudice and judgement would be much more difficult to come by. We would have to live in the discomfort of not knowing.
But what a wonderful world it would be!
Emma - 13 months old - eating a brownie
Click here to hear Emma singing Que Sera, Sera