Wednesday, March 28, 2007
I cannot read an article or watch a program about autism without feeling tense. If I think too much about it sneaky tears spring at the corners of my eyes and I feel a familiar tightness in my throat.
Yet, I cannot pass up an opportunity to learn everything I can about the subject because it has changed my life.
My son has Aspergers Syndrome (AS), which is an autism spectrum disorder. Today, 1 out of every 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes and AIDS combined.
While the effect of AS on peoples lives varies, persons with AS often have limited social skills. These include an inability to read body language, navigate personal space, take turns conversing and speak in a normal tone of voice (people with AS often speak loudly and dont understand the need to lower their voices in quiet places such as a library or church). While they can have extraordinary vocabularies, they also can be extremely literal and have difficulty using language in a social context. Persons with AS prefer routines and are often preoccupied with a particular subject or talent to an extent that they become expert on it.
April is Autism Awareness Month and with the meteoric rise in autism diagnoses, I expect to see an explosion of information in the media. I welcome it as much as I fear it. I want to greedily soak up every bit of data I can find and at the same time I want to turn away from the reality my son faces. I say this with the knowledge that his future is not bleak. But as his mother, it pains me to know his obstacles could be far greater than the average boy.
I still consider myself lucky. My son was diagnosed early, began treatment young and I believe he has what one expert calls a dash of autism. To look at him, even to speak to him for short period of time, you would not know that he is on the spectrum.
But hes always been a little quirky and that doesnt go unnoticed, even by him. When he was five he told me that he knows hes different than everyone else in his kindergarten class. He explained it like this: Mom, its like everyone elses favorite color is blue and mine is green. They all like blue, but I like green. I see everything through the color green. I knew exactly what he meant because for the past four years Ive watched him try to fit his green-loving self into a blue world.
He was three when his eccentricities and temper tantrums became unmanageable and we knew they were not going to be fixed by encouragement and time outs. He spoke early and in complete sentences and we called him the little professor. He never used contractions and had an outstanding vocabulary. As a toddler it wasnt unusual to hear him say, I will not eat that disgusting vegetable. When he entered preschool, his facility with language became his Achilles heel, for he had no concept of give and take and was an expert on Star Wars by age 4. When he talked to a friend he expected him to stay until he was done. The average preschooler has an attention span of five minutes, if youre lucky. After five minutes my son was only warming up. When his friend would walk away, my son would punch him and then scream and cry with frustration. This daily occurrence often ended with his teacher having to hold him in a corner of the room so he didnt hurt himself or anyone else.
Its been two years since he was diagnosed and started treatment. In that time Ive learned how fortunate I am that the prism through which he sees the world is not so different than mine. For unlike many children with full blown autism, my son can speak and we can understand each other. I was reminded of this when I viewed Autism Every Day , which profiles families dealing with the relentless care of children with autism. The sense of desperation the mothers feel is palpable, making the film often hard to watch. But it is also inspirational, as they retain a sense of hope for their childrens future.
It is this hope and the ability to find magic in the different world these children inhabit which has been the most surprising to me. When my son was diagnosed I had no idea if the therapies would make a difference. I didnt know if he could enter a mainstream school. I didnt know if hed ever make friends or even be able to have a normal conversation with anyone. I didnt know when or if the violent tantrums brought on by frustration would stop. I was so focused on the behaviors I wanted to change I didnt think about what I might gain from my sons view of the world.
Its a very exact world that prefers everything to be black and white, but is learning to accept some gray. Hes made his first friends this year and is learning about compromise. I can be three rooms away in the house and his voice is so loud I can still hear him talking. But thats OK because his friends dont seem to mind. Not surprisingly his best subject is math and his passion is numbers. He thinks about them all the time and they define his experiences. When he has a writing assignment, before he puts pencil to paper he figures out in his head the least amount of words he can use to express himself, then reluctantly starts writing.
Recently, I was watching TV and my son came in a little before 10 p.m. I was flustered because I was crying and didnt want him to see. He walked up to my chair, his face inches from mine, and began talking. He didnt stop talking until I interrupted to tell him it was 10 to 10 and he had to go to bed. He then looked at the clock, told me Mom, its 9:48, which means its 12 to 10 and he went to bed. I turned my program back on and realized he never even noticed I was crying, yet he knew exactly what time it was.
But when I worry about his ability to make emotional connections I only have to remember his dream. He wants to be a scientist so he can invent things. He tells me he wants to invent a machine that will let people live forever so I will never die.
Deanna Martin Mackey is the mother of an 11-year-old girl, a 7-year-old boy and a 2-year-old girl. She is an associate general manager at KPBS, and has been writing professionally for 20 years. She is working on her first novel about a family.