When you were first born I had an idea about you, it was an idea I have come back to, all these years later, it was an idea that was more right than wrong. You were very much your own person right from that first moment you drew breath. I remember marveling at your strength and independence. I knew almost nothing about autism. I hadn’t taken the idea of independence and remolded it as “autism” yet, only to rework that idea back to its original concept later. I saw you and appreciated you for who I saw you to be. Defiant, independent, strong, determined and silly. Even as a baby you loved to laugh and appreciated silliness in all its various forms. You loved playing peek-a-boo and being thrown in the air. Those first eighteen months, before I knew words like “vestibular”, “proprioceptive”, “stimming”, “perseverative”, “echolalia” and all the other words that threatened to push you from center stage, making you less you and more an example of a diagnosis weighted with other’s learned opinions, I was in awe of you.
Words have power, but words can confuse, they blinded me for many years, I became caught up in what they meant or what others thought they meant and as a result was less able to appreciate you. I used to wield those words as though they were weapons banishing what was, into something else, something undefinable, something “other”, something I wanted to find a way to control or remove.
As a baby before I knew those other words, you were in a state of either bliss or agitation. I use to watch you with wonder and admiration. You were distressed by the lights and the air seemed to hurt you, as though it scraped against your skin. You liked being swaddled tightly in one of the soft baby blankets I had bought for your arrival. You slept almost constantly those first two weeks. Then your deep slumber was interrupted by internal discomforts I could not guess or see. You greeted these intrusions with indignation, howls of distress and I felt a helplessness I had not known could exist. A helplessness borne from not knowing; watching, but not able to intervene, hearing, but unable to understand. I tried to comfort you, but my understanding of what comfort meant was not the same as yours and so your teaching began. You have been so very patient with me, dearest one. You have never given up on me.
You have painstakingly tried to communicate in a language that does not come naturally to you. You have met me more than half way. You have tried over and over to help me understand and you’ve never stopped. It has taken me a long time to learn some very basic things about you, things you’ve been telling me ever since you were born, but that I couldn’t understand. Things I still forget, but I’m getting better at listening to you and understanding that words are not the only way a human being communicates. I am getting better at hearing you. I have learned to listen to your behavior as though it were a conversation, because it is how you reach out, it is the way you connect. I am learning to lean into you, to not try to do a word-for-word interpretation of your verbal utterances, but to try to feel the meaning of what you are doing or saying.
You are Autistic. Do not let other’s interpretation of that word define you, rather help others understand that you define it. Make your mark in this world by continuing to believe in yourself. Continue to stand up for yourself. Advocate. Let your voice be heard. “Actions speak louder than words,” people say, but they don’t seem to apply that to you and others who cannot and do not rely solely on language. Those people need to be taught, because actions DO speak louder than words if we can learn to listen to them.
You, my beautiful daughter, are kind and good and honest and talented and funny and caring and sensitive and yes, Autistic. Be proud of your neurology, but do not allow others to limit you because of it. Do not allow someone’s idea of what that means to encroach on who you are or how you perceive yourself. You are Autistic and you are my daughter. It could be argued that both come with a great deal of baggage, but both also come with many wonders and advantages. Concentrate on the positives, lean into them, and make your way. Reach out to me, grab my hand, together we are stronger than we are alone.
I am so proud of you.
Richard, Em & Me – 2010