Editor’s note: the following essay was written by Krista Mason, founder of Benjamin’s Hope and mother to Ben, a young man with autism. Krista asks us to imagine what life would be like if we personally lived with autism.
I’d like you to imagine what it’s like to live with autism. Not sure what it’s like? Well, let me paint a picture for you with words . . .
Imagine that when you want to tell me something you cannot get the words to come out. Maybe you have something important to tell me, like you are hurting, and you cannot find words to tell me, or you cannot speak the words in a way that I can understand. Perhaps because you are different, someone has been unkind to you, and you need me to know this…you need me to understand how this felt to you. You need me to love you…to reassure you that you are loved, and understood.
But you cannot make me understand you. You have no words…
As you look around it seems to you that everyone else is able to move through this life with ease. They can navigate the complexities of a day: work, relationships, even traffic… in a way that you can’t. They speak and people respond to them…they can be understood, they can be heard. It is all very, very hard for you. Your body seems to have its own agenda that you can’t control. Sometimes you have to make noises. And the noises that you have to make, that seem to literally erupt from you, cause people to stare at you. Sometimes your body moves in ways that are odd and even shocking, to others. But you have to do it. Your hands flap, and you must jump. You know that others don’t grunt, and jump, or make high pitched squealing noises.
All of this makes you so very different.
So sometimes other people stare at you, don’t they? And even worse than staring, sometimes they act as though you are invisible. They don’t know why you do what you do, and they can’t tell from the outside that you have feelings and ideas on the inside. They assume that because you can’t express your intelligence, that you have none. Your face shows no emotion. By the time they finally “see” your emotion you have become violent…explosive. How can anyone understand what it is like for you, to be trapped in a body that binds you, even acts as your enemy at times? Sometimes all that is within you that has no means of escape through words or even touch; it smolders and boils like molten lava. It becomes too much… it must get out. You find yourself beating your mother uncontrollably. You are putting your arms through windows, through glass that cuts your flesh. Some days you scratch at your skin until it is raw and bleeding. Or you spit in the face of everyone who approaches you…until no one will approach you. It is too much.
No one can get in…really…and there is no way for you to get out.
You are Benjamin.