“It is in our best interest to remember that we are all the same.” ~ Barb Rentenbach in her book, I Might Be You.
One of the most insidious and destructive messages parents are given about their Autistic child is “the list.” I am referring to that list of deficits we are given. The list that enumerates all the reasons why our child has earned the “autism” diagnosis. It is a list that divides. It sets us a part from our child. It makes us question our maternal instincts. It makes us wonder what we did wrong. It is the list that becomes our to-do list. A list of things we now set out to “fix”. Or so this was my experience when my daughter, Emma was first diagnosed.
That list, filled with judgment, a critique of my not-yet-three-year-old child, the same child that just moments before, I knew was different from what I expected, different than my son, yet still was a part of, was now branded with “other”. If we are going to make such lists, I think it only fair the “evaluator” and all members of the human race be given similar critiques. I would be curious to see how each of us stands up under such scrutiny. Let us be evaluated by someone who does not share our particular neurology. Let us each be judged by another – another who deems themselves superior. Let’s see how well that plays out.
“Loneliness is the most predominant side effect of our unique design. Many times, autistics revert to isolation by default rather than preference. It is infinitely easier to back away and not try to be included instead of oafishly stepping in and attempting to convey you intend to be a part.” ~ Barb Rentenbach in I Might Be You.
Have you ever felt like a fraud? Have you ever said something to someone only to realize you said the wrong thing? Have you ever been in a social situation and left, wondering why you feel uneasy, upset or just sad? Have you ever spent time in the presence of a group, yet felt lonelier than had you been alone? Have you ever had the thought that if people really knew you, they wouldn’t like what they found? Have you ever felt separate from, less than, not good enough? Have you ever felt critical of the way you look, the shape of your body, the size of a particular body part and wished it were different? Have you ever thought if only that part was smaller, larger, different, if only the number on the scale was less, if only your hair was lighter, darker, straight, curly, your skin was a different shade, your height… Have you ever thought if only X was different, I wouldn’t feel this way?
Remember a time, no matter how brief, when you felt that magical euphoria of connecting with another human being? That moment when you felt the wonder and bliss that only comes with friendship and love, the beauty of connecting with another? Remember what that felt like? Wasn’t it beautiful? Wasn’t it unlike anything you’ve ever felt? A kind of anything-is-possible feeling? A feeling of all being right with the world, that joy of knowing we belong. Who among us has not experienced both? Who among us has not felt the horror of feeling separate from, the worry that we are somehow damaged, not right? Who among us has not felt the inextricable sadness that comes from feeling we are all alone? Now add an entire society, a whole group of people, all of whom have decided we are “less than”. Feel what that feels like.
Go back to the memory of bliss, of joy, of connection. Feel the vibrancy, the exuberance that comes with that. Which do you choose? Would any choose differently? We are all served by remembering we are more alike than not.
“Reach out and connect with those who may be struggling with separation. It takes just one person to care to change a life for the positive. Be that for someone.” ~ Barb Rentenbach in I Might Be You.
Emma, Barb & Lois the week we recorded the audiobook of I Might Be You