On World Autism Day

As a speaker, a writer and advocate for healthy kids, I make my life in the business of communication.  As a NLP Master Practitioner and Life Coach, I pay attention to the words people chose to express their ideas and emotions, and I am careful of the language I use to express my own.  I am a voracious reader, and it is normal for me to have nine or ten books going at once.  Words matter to me. How ironic then, that one of my most primary relationships is one where language and verbal savvy have little value.  I am the step-mother of a largely non-verbal 17year old autistic teenager, who lives with us full time. Kilee can speak, she can ask for breakfast, she can tell you she needs to go to the bathroom, or chose between two activities when a choice is presented to her.  Kilee does not, however, use language as a primary way of communicating her needs or her feelings. She has no language to tell us that a caregiver was impatient with her during a memory exercise, no language to express what she wants to do for the afternoon, no language so that she can spontaneously say those cherished words “I love you.”

Kilee is a teenager, and having three other teenagers in the house, I sometimes joke that there is little difference between them, except that there is.  My kids talk to me about their friends from school, they tell me exactly how I irritate them, “mom, why do you have to laugh that loudly!”, and yes, on occasion, when they are feeling particularly generous, they still tell me that they love me.  Words with Kilee, are usually used to echo someone else’s ideas, or given when prompted in a somewhat robotic fashion.  When given a choice, Kilee will speak very little, and yet over the past five years, I have come to understand how it is possible to know a tremendous amount about a persons needs, their mental state and their feelings, without the use of language.

When I first knew Kilee I made the common mistake of equating a blank stare and limited language with Kilee’s understanding of what was going on around her.  Basically, I didn’t think she understood most of what was being said, and I didn’t think she could tell when we were pleased with her, or upset with her, or needed her to pay attention.  Many of her reactions seemed opposite.  For instance, seemingly out of the blue, she would laugh hysterically, which I took to mean that she was happy.  It almost always meant that she was anxious, except when it didn’t.  It took me three years to hear the difference in her tone when she really found something funny, another tone when she was planning some mischief, and a gleeful belly laugh when she found something really funny.  My Tasmanian devil of a daughter, Kate, delights Kilee.  Kate’s super speed way of dancing and running and swinging from furniture creates an excitement in Kilee that can cause her to jump up from the coach spontaneously, then stand there trying to figure out a way to participate. You don’t need language to show that you want to be part of the fun.

My oldest son William had a group of friends over last week.  They were making a happy racket in the hot-tub.  Kilee said hot tub, hot tub, hot tub and when I told her the boys wanted some alone time, I was startled to see tears running down her face. Just because Kilee can’t say she feels left out, or wants to have her own friends over to play with, doesn’t mean it’s not true.  In fact the more time I spend with Kilee the more I am convinced that her needs are very similar to mine.  Kilee needs to feel safe, she needs to feel loved and she needs to feel valued. There are thousands of ways she expresses this everyday.  Watch her eyes move, listen to her sounds, and feel her energy.  That’s right, feel her energy.  I can feel Kilee’s energy across the room.  When she is mad, I pay attention, because something big is about to happen.  When she is bored, I can feel and when I ask her if she would like to paint, or blow bubbles, or walk the dog, she almost always leaps up as if saying “thank god you guys finally understood that I am bored.”   Kilee has helped me trust my own read of people’s energy, and the more I am able to read Kilee’s non verbal cues the more skilled I am at reading others.  In truth, the most important communication in life is non verbal.  A tender look, a lovers touch, our babies hands on our face, these come silently but express deeply.

Kilee is teaching me to pay attention.  She is showing me that words are only one way to express yourself in the world.  In many ways, it is words that are imperfect.  I can light up my face and say “it’s great to see you.” While wishing the meeting would be over; Kilee can’t.  Kilee doesn’t know how to be insincere in her body language or her energy.  Kilee is always, authentically and often obviously, who she is.  I have a lot to learn from Kilee and I thank her for reminding me that words are only so important, it is our actions, are intentions, and our true feelings that matter the most.

So today on World Autism Day I would like to celebrate the gift of non-verbal communication.  All the people who love Kilee would give anything to have her happily prattling like the rest of our teenagers, but I would never want her to lose the gift of feeling and knowing. I celebrate everything that Kilee is and all that she has to teach us.  On World Autism Day, I remember that autism, along with its phenomenal challenges, has its gifts.  ....Silken