I rarely watch the news but last night for whatever reason it was on and I was curious as the lead story was the new CDC statistics on autism. Of course the statistics given were startling–1 in every 88 children will be diagnosed on the autism spectrum. Very startling.
What stayed with me more than the statistics last night was the “early indicators” that should be screened at 18 months and again at 2 years old. Pointing, eye contact, gesturing, waving…basically sharing attention with others.
My girl did none of these things. She never pointed at something with the intent that I see it what she sees. She never brought me an object to show me. Her baby pictures show her most often looking to the side. Later she would look at me but it was a rare day to get a smile. Instead she just looked. Never did she wiggle in her infant seat with anticipation and joy that I was approaching. She preferred to be in her crib or swing, rather than in my arms. At 18 months she was fascinated with television and soft blankets. As a toddler going to the park meant her on the merry-go-round the entire time, with me prying her off at the end.
It always seemed to me that she was unhappy. I recall thinking how different a girl is compared to the happy-go-lucky brother that preceded her. I had thoughts that if she is this cranky at age 2, it is gonna be a long road through the teen years.
Never did I think autism. Never did I think anything. It just was.
Sitting in the neurologist office at age 4 should have been an indicator for me that this wasn’t exactly the norm. Nope. I just went with it. He diagnosed her with PDD-NOS and sent me on my way with an order for an MRI and some speech therapy. I walked out with no clue what that meant and at the time I had no real sense to find out. It just was.
After being reminded of the “early indicators” last night I wondered where was my head when the day I took her to the neurologist. I remember each minute of the appointment: the office, his bizarre mad-scientist type hair, the black bag with all the doctor gadgets, her under the exam table needing to be coaxed out, her inability to perform the simple tasks, and him saying PDD-NOS.
And yet, I left the office without any sense that it meant anything. I cannot figure out of the source of my cluelessness, and perhaps it does not matter.
In time I learned everything I needed to about her, and not necessarily autism. Off we went to speech and occupational therapy. We labeled everything in our house. We saw more doctors and had more evaluations. She was placed in a research study for girls on the spectrum and eventually her PDD-NOS diagnosis was dropped and it was changed to autism. Social skills groups and cognitive behavior therapy groups became our routine.
For some families autism becomes the world and the universe. I have no idea what life would be like with a child so greatly impacted as some that I read about or see. I cannot imagine the endless days and nights of some families.
For me, autism did not become my world or universe in the sense that I needed to get rid of it. In some ways that I am only now beginning to see, I embraced it. I did not fight it or wish it gone. Perhaps without realizing it, my cluelessness was part of the path that would lead me to where I am today.
I have no regrets for the way in which I took in her diagnoses. I know that I learned what I needed to, in the timing that I needed to.
Most important, I know that I always saw her…..then I saw autism.