Orange and the danger of labels

I will start out this post with some good news: Boo Bear has gone 38 days without a seizure.  His lab results came out beautifully and he has not had so much as a cold in weeks.  He is growing like a weed and can eat his way through my refrigerator in one sitting.  Good stuff.

There is a lot of debate in the autism world as how we should classify different learners. I detest the terms “high functioning” and ” low functioning.”  As a matter of fact, I really don’t like labels all that much.  To be sure, they have their place.  I like labels on my food.  I need to look at the ingredients in a product to make sure the food does not contain any allergens which will make me sick.  A “sell by” date is also useful.  It keeps us from eating food that is trying very hard to turn into penicillin.  But, labels on people are not so useful.  The term “low functioning” conjures up the image of a child, usually male, nonverbal, sitting in a corner headbanging and rocking.  The term “high functioning” makes us think of the lead character in the show The Good Doctor.  (To be clear, I don’t watch TV, have not seen the show, but everyone tells me he is marvelously high functioning.  Okay then.)  But, no one fits into this label all the time.  Because Boo Bear does not speak using his vocal chords, people tend to write him off a low functioning.  But, he has an infallible sense of direction, a wicked sense of humor, and can juggle multiple ideas in his head at one time.  I am not sold on the idea of “non verbal” or ” pre-verbal” either.  Most people describe Boo as one of the other.  But, he is very communicative.  Put his Ipad in his hands with one of his communication apps and he can chat up a storm.  He will tell you who he wants to see, where he wants to go, what he wants to do, to eat, etc.  At the end of the day, I will hear him chatting too himself on his Ipad, talking about what he did earlier in the day.  The strikes me as pretty verbal, he may not be using his vocal chords or lips, but he is definitely communicating.

Sometimes it takes a bit of thinking to unwind his logic.  For two weeks he kept using the Ipad to tell me about the color orange and the fruit.  His PCAs and I were baffled.  Orange is not his favorite color, and he does not like that type of fruit.  We were all scratching our heads.  Late on night A texted me and said, “What if orange means basketball?”  Oh!  The light came on in my head.  Boo loves to go to high school basketball games with her and she has taught him some rudimentary ball handling skills.  I went into his room.  Boo was happily flopped on his bed playing with his device.  “Boo”, I said. “Does orange mean basketball?”  Boo immediately looked me straight in the eye and gave me an ear to ear grin.  He then shot me a look as if to say, “Isn’t it obvious?”  “Ooh, now I get it.  Sorry it took two weeks for us to figure it out.”  He grinned, shrugged, and went back to his game.  I made a mental note to add basketball games to his preferred list of places to go.  As I said, he is very logical, but one has to think outside the box in order to understand his logic.  All behavior is communication.  For two weeks he had been telling me something, I was just slow to pick up on the meaning.

So, back to labels.  I really don’t like them except on my food.  But, people seem to want to label Boo, or anything else they don’t understand.  So, instead of high or low functioning, why not “in need of lesser or greater supports”? This could really describe all of us.  Boo needs help with some activities of daily living, but in other areas he is more than proficient on his own.  So are we all.  There are days I can be up at 5:00 in the morning, go to the gym, work 9 hours, go for a run, practice piano, interact with my family and pets and fall into a blissful sleep by 9:00 pm.  There are other days I can’t even figure out how to match my socks or remember to feed myself.  Like the rest of us, some days I can support others, other days I am in need of more support.  So, I don’t really call my son high or low functioning.  This is too simplistic.  And, he won’t answers to these labels, either.  If I really want to get his attention or interact with him, I call him by his name, Boo.






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