"Words can hurt”, but it is we ourselves who allow words to wound and wield power over us.
I remember there was a time after my daughter was first diagnosed that I couldn’t even say the "A” word. The thought of my child, my beautiful 2 year old baby, having something called "autism”, a "life-long disability” that was "incurable” ran continuously in an endless loop around and around my brain. My heart ached to the very core of my being in such a way as I had never felt before.
I had fallen deep in the abyss of anger, angry at God and angry at the world that this "thing” was affecting my child and our family. And yes, I constantly wondered, "Why Me, Lord?”; "Why Her?”, and "Why US?” I just couldn’t make sense of any of it; and behind the pain was fear – an overwhelming, paralyzing, mind- numbing terror - WHAT was I going to do? How would I ever begin to handle this as a parent? COULD I raise this child? I was totally clueless about where to begin and for a while the uncertainty kept me mired in a miasma of despair and helplessness.
Then, one day, with the support of others from the local autism organization, I tentatively took those first few faltering, awkward steps forward on the path of what later would be a life-altering journey. My daughter began to receive speech therapy and early intervention services. The baby steps of improvement we saw in Catherine became a pinprick ray of light in the very dark tunnel which enveloped us.
Slowly, ever so slowly, I gradually let the anger fade away; and while I didn’t embrace the word "Autism”, I eventually came to terms with what the diagnosis meant for our child. I didn’t need to love autism and the many challenges and obstacles it placed in our paths, but I did have to accept that autism made Catherine the person that she is. Autism was now a part of our lives and the power it held once to hurt was now something that I eventually understood was responsible for how my child thought and perceived the world around her.
I also heard of a movement which focused on using "People First” Language. Instead of saying that a person was ‘autistic’ or ‘handicapped’, I learned that one should put the person’s name or general description in front of the label, to use "person who has a vision impairment” versus "blind person” or "person with an intellectual disability” instead of "mentally-retarded”, (see People First Language by Kathy Snow and Spread the Word to End the Word). Using the word "person”, "individual”, or someone’s name before the label allows all to see that a boy, girl, man or woman is a person first just like any other, that the disability or label is not solely what defines that individual as a human being.
I certainly acknowledge the value of using People First Language in giving those with disabilities the respect they need and deserve. I also understand that I cannot separate Catherine from autism; it is why she is who she is. It is also the reason why some people with autism call themselves "autistics”. They have embraced the word and its usage as an unapologetic message to the world that they have an identity and a community, the same way that most people who are deaf choose to demonstrate. It is their right as those with the condition to let us know how they wish to be understood. Those select groups have claimed and taken ownership of the words related to their conditions but do not let its limitations define their capabilities.
I believe people with autism want to be known as individuals first who are each distinguishable from one other but share characteristics common to the condition, which in turn affects how one thinks, communicates, and interacts with the world around him or her. May we all be open-minded to the possibilities that exist within these individuals and grow to appreciate the strengths and abilities which they possess and can contribute to our society.