By J. Lorraine Martin
Over the fifteen years I’ve raised my autistic son, I’ve struggled to articulate to others the pain of the journey. I’ve read reflections equating autism to an unplanned trip to Holland. When one has laid on a cold, tiled floor in a darkened room with an autistic child beating his head with his fists in sheer catastrophic angst, screaming “I’m afraid!” and “Make this stop!” and one craves rescue both for them self and their child, Holland is simply a fairytale. Another essay that came my way suggests the universe is paying me a compliment as I was selected for this role because I was so patient and wise; I’m encouraged to gaze at my saintly self in the mirror.
These reflections ring untrue in my mind. Here is how I have experienced autism…
Autism is an empty suitcase. Upon receiving the diagnosis, you will hear and see volumes of theories and remedies, with no definitive answer in sight; it is to be overwhelmed with the emptiness of the suitcase placed in your hand and the myriad choices of what to pack.
Autism is an empty guidebook. You will hold the book in your hands looking for answers, but you will painfully come to understand your job is to fill the blank pages with your own words, your own map, your own best guess at solving its riddles; your child is like no other despite the commonality of a label.
Autism isn’t locatable. It is a mysterious an endless array of degrees of longitude and latitude, not confined to one defining point on a map. You often have the sense “Where am I? Where am I going?”
Autism is war. A recent study confirmed that autism moms have stress levels consistent with soldiers in combat as we often live our lives bracing for the next assault. Will my son scream at a family restaurant outing because the blender came on? Will he attack our family dog when he barks? When his sobs and remorse replace his anger, can my heart handle yet another deep break? In a marriage and in a family, tough feelings are tossed around and deflected, like juggling a grenade. It is to find yourself lying on the floor sobbing so gutturally that your chest will ache for days because your son is hiding in a make-shift fort at school due to overwhelming fears. It is to see your other son hide in his room and lock the door when he hears his brother raging. It is to listen to your daughter tell you how she watched her brother screaming at a fire drill at school while others mocked him. It is to see your strong husband appear forlorn and listless, as you both helplessly watch your son shrieking and being self-injurious in a windowless basement room because he is not even comfortable in his own skin.
Autism is a thief. It is to send your family away for a vacation because your autistic child can’t manage the trip’s demands. As your other children are putting their feet into the Pacific Ocean, you will be sitting in a McDonald’s play land on an Easter morning, sinking in despair. Autism took the boy who could have been, loaded up holiday traditions in its bag, and often separates you from the rest of your family.
Autism is isolation and loneliness. People with sick children receive cards, phone calls and casseroles. Autism parents most often receive silence and recoiling as the topic is uncomfortable.
Autism is guilt. You will feel it’s your greatest moral failing that you didn’t find the cure, saddling you not only with the death of a dream but the guilt that you could have rebuilt the dream if only you had tried harder.
Autism is endless. Autism denies a parent an end to the grieving process. While you hope for new studies and insights, savor small gains, and try new medicines and interventions to smooth the edges out, mourning and yearning are always flowing under the surface.
Ironically the following quotes inspired by cancer battles resonate:
"Cancer changes your life, often for the better. You learn what's important, you learn to prioritize, and you learn not to waste your time. You tell people you love them. My friend Gilda Radner used to say, 'If it wasn't for the downside, having cancer would be the best thing and everyone would want it.' That's true. If it wasn't for the downside." - Joel Siegel
“When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell." - Lance Armstrong
So what can a person “outside” of autism do? Listen. Encourage. Understand. Don’t Judge. Ask Questions. Give your time, your heart, your voice and your money to causes that seek to find answers to this devastating, lifelong condition. The sorrow I share is just a drop in the painful ocean of this journey as many a parent will never hear words at all from their children, never have eyes meet theirs, and may lack the money or access to quality care. Society must rise to the challenge to answer this crisis. Will you?
Like Lance, I wake up and consider my choices, and each day I continue to fight like hell, but make no mistake, it is a fight, a long battle, a never ending war against an unknown and unrelenting enemy that resides within my boy. I’m not traveling to an enchanted land; I’m simply trying to survive and keep a family afloat.
My boy gets up each day and also fights. He fights his fears and phobias that often throw trenches and land mines in his pathway, but he fights for happiness and meaning as we all do. If anyone can look in the mirror and see a saint, it would be him, my boy and every child who lives a life with autism.
J. Lorraine Martin is a graduate of the University of Florida and a mother to three children, one of whom has autism. She maintains a personal blog featuring irreverent musings and deeper reflections on a variety of life topics including autism at http://cheeselesspizza.blogspot.com.