Autism Awareness Month: A Mother's Story
Some of you may or may not know that April is Autism Awareness month. For my family and for my son, every month is autism awareness month. My son Max (I have changed his name to protect his privacy) was diagnosed with Autism in the months following his third birthday. You have to understand my background to see how very difficult autism can be to detect even for parents who already are well aware of autism. I have a graduate degree in Special Education and had been working in the field of teaching people with developmental disorders for over a decade. Yet my educational background and career experience still didn't prepare me for what was to come. Despite all that I knew about autism, I was slow to recognize it in my own child. Autism is a very complex and mysterious disorder. There are no physical markers, no single genetic blueprint, and the behavioral manifestations vary greatly.
And if you line up a group of children having autism side by side, they are all going to be so vastly different that you will wonder if they even have the same disorder. Noted experts in the field quite often cannot agree upon the very definition of what autism is and is not. Autism is not an easy disorder to diagnose and it is even harder still for parents to comprehend the meaning of some early warning signs.
I thought that the best way to promote autism awareness was not to tell you about it but to show you. The following is a page from a diary I was writing during the time period that my son was in the process of being diagnosed with Autism. You can clearly see my fear, my denial, and finally my acceptance that what I was seeing with my son had a name. I am hoping that my story will help other parents to become more aware of how autism may show itself at an early age and to trust their gut feelings.
I am up early today. I have the great need to write so I will. In reading that Catherine Maurice book, she talks about waking up and the sensation of having slept, then the adrenaline pulsing, then a realization of something wrong. "What is wrong?" the minds wonders, and remembers, my child is autistic. Every day I have been waking up that way. I am deep within this now. No turning back.
I half convinced myself yesterday that nothing is wrong. He plays with puppets, he laughs, and he looks at us some of the time. For every hope there is a more devastating bizarre thing such as the toe walking, grunting, and playing with a broom not to sweep, but to part its "hair" over and over.
I looked on-line at an "autism picture" page showing the faces of autism. I was looking for something, I did not know what. Could these boys look anything like Max? And I found it. My gut lurched. I grabbed all the pictures of Max I could find. The other week I had separated the pictures I had yet to put into an album. One was labeled Max. I found some recent ones and I saw what I knew was there. Looks of despondency. Looks that went through you. Not many, but there. I had captured his absorption of a door to a cabinet, so entranced that he did not look up for the picture. Pictures of Max and his brother where his brother is looking protectively at Max but Max is not looking at his brother. When did this happen? How could we be so blind not to have seen this? I looked at baby pictures. Nothing there. He is looking at us, smiling, happy. And then later, still smiling but at times this other look, this look of detachment. Was it 18 months, 2 years? Certainly others would have noticed.
But yet in playgrounds people comment about what a good child he is to be so preoccupied with play. No time to get into trouble, or engage with other kids. I watched him with a new eye at the playground. He played alongside the others just fine and I didn't see much interaction going on with these very young children. But the other children were aware and looked and talked when you spoke to them.
In another book called "The Siege" the mother talks about her startling realization that her child had never pointed, had never asked the questions every child asks, "What's that?" Even Max's brother, who was a late talker, and who only had 10 words at age two, one of them was this sentence. He would demand to be carried around and would point to everything, asking "Whadat?" We tiredly complied, not knowing what a wonderful gift this was. Max seems oblivious to know the name of anything. He shows no interest.
I looked in the journals that I keep for the boys and I looked at what I had written for Max. Could I have known but did not want to use the words? It was all there but just written as part of his personality. I stopped cold at one of the sentences I had written, "You grab at our hands and seem to use them as tools to get what you want, why should you have any need to talk?" I had made him seem like a clever boy choosing not to talk. And then I wrote how he wanders and never looks back. How he is so stubborn, self-directed, independent. The very word "autistic" means self-directed. But so much so that the child seems oblivious to other people.
I think I had known when we went to the bookstore 8 months ago and I picked up a book called "Late Talkers." The author, a parent of a late talker, talked about Pervasive Developmental Disorder, a new word for autism. And I was carrying around this book and crying as I wandered through Barnes and Noble. I read bits and pieces of it aloud as I paced the aisles. But it did not seem to have much meaning. I have said it half jokingly to people, "Well, maybe he is autistic." Ready for them to say, "Oh my god, no!" which most people did. But I could tell my friend Karen who is an OT, was worried. And it unnerved me. I knew she had seen kids like this. Later she would tell me she was not going to label him when I was not ready to use the words myself. I had to process this for myself, let it rise into my consciousness and out into awareness.
My son has autism.