In honor of Autism Awareness Month, we ask that you sit quietly and really — really — try to imagine how it is for some children to exist, as described by a mom who knows all too well. This is what life is like for a child who has autism.
Imagine that from the moment you were born every aspect of your being was evaluated and studied with a critical eye. Imagine that who you were, the way you spoke, moved, and behaved was seen as deficient. Imagine that from an early age you were talked about as though you didn’t understand, and even if you did not fully understand everything said, you understood the emotions behind the words, the disappointment, the fear, the anger, but you had no idea why you had caused such a response. Imagine how that would make you feel. Now imagine how you would feel if you understood every single word uttered, but you could not speak or make it known to others that you understood. Imagine how you’d feel if you grew up believing your very existence caused others discomfort, pain, and suffering.
Imagine that as a small child you were assaulted by light, sound, touch, odors, taste, things that did not cause others pain but that made your life almost unbearable. Imagine that you also felt people’s energy intensely but were often confused and overwhelmed by these feelings. Imagine that when you cried in distress you were greeted with anger, confusion, or were told nothing was wrong and to stop behaving this way. Imagine how you would feel when you finally located the correct words and spoke them, people misunderstood you, became angry with you, or you were told the tone you used was "wrong," "inappropriate," or that the volume with which you spoke was too loud or too soft. Imagine trying as hard as you could to speak as you’d been instructed, but no matter how much you tried, you never seemed able to get it “right”. Imagine what that would be like.
Try to imagine how you’d feel if you mustered up the courage to connect with another human being only to be shunned, teased, or rejected and told to go away. Imagine what it would be like to want to have friends and play dates and sleepovers but you had none. What if you tried to make friends, but when you tried to connect you weren’t able to and didn’t know why. What if your attempts to be friendly were seen as acts of hostility. What if you punched someone on the shoulder because you’d seen friends do that to each other, but when you did it you were taken to the principal’s office, reprimanded, and threatened with expulsion. How would that make you feel?
Try to imagine what it would be like if the few things that brought you joy were stopped or taken away from you. Imagine if you loved nothing more than to jump up and down, that this motion made you happy and calm, but when you did this you were punished. Just imagine what it would be like if the things you found fascinating were ridiculed and joked about. Now imagine that you are unable to make words form in your mouth so that you could say anything to explain or protest. Or imagine what it would be like if you were able to speak and when you did, you were told your words were unacceptable. You were threatened with punishment and institutionalization. Take a moment to really imagine how that would feel. Imagine what it is like to need help, to have to rely on people, and to have those people hurt you, betray you, get angry with you over and over again.
Just imagine how it would feel if experts talked about your neurology as a deficit. Imagine how it would feel to be told over and over that you were neurologically incapable of understanding what another person feels, and that you couldn’t truly understand your fellow human beings. When you suggested you felt a great deal, when you talked about how painful it was to look directly into people’s eyes because it was like seeing into their souls, or when people went to hug you it made your skin crawl or the odor emanating from the other person was too overwhelming, imagine what it would feel like to have people suggest you should just try harder or that you should do it anyway. Imagine, just for a moment, how you’d feel if those same people then accused you of being difficult and told you it was impossible to have a “rational” conversation with you, or you were told you were rude when you confronted them with their insensitivity. Imagine what it would be like to be dismissed and silenced over and over again. Just try to imagine what that must be like.
Try to imagine what it might be like to be autistic.
Ariane Zurcher, a New York City mother of two children, writes about her daughter Emma’s journey through autism—and Emma’s parents’ hopes for her future—at emmashopebook.com. She also blogs for the Huffington Post.