It's not like you think. Autism, that is. And that's what I want people to know.
I have been thinking lately about disclosure. How open should I be about Oliver? At what point do I tell people that my son has autism? What do I want people to know about life with Oliver? What goal do I have in mind when I share this important fact of our life with people?
Shortly after we were given the diagnosis in early August of this year, I took Oliver to his pediatrician's office for his 3-year check-up. In the examination room a nurse sat down with us, Oliver's file in front of her, and asked if there was anything specific that we wanted to talk to the doctor about.
"Well, Oliver was just a few weeks ago diagnosed with autism and so I guess I have some questions about that."
I remember that my face turned red because I still wasn't used to saying these things out loud.
No reaction from the nurse but she made a note on the file and then, without looking up, started reading questions to me from the standard child development checklist. Does he do this. Does he do that. Can he do X, Y, and Z. As the questioning proceeded I squared my shoulders, straightened my back, firmed my jaw a bit more and willed myself not to cry. I looked directly at her and answered "no" every time. I couldn't believe she was putting me through this drill. After I had answered all but one question negatively I could see that the nurse's face had grown alarmed. She flipped through some pages in the file until she found the check-list presented at Oliver's two-year appointment.
"But he was right on track last year at this time."
"I told you, he has Autism. He started to lose all those skills around the age of two. In retrospect I think he started regressing around 18 months."
The nurse left, looking shocked, and the doctor came in, pronounced Oliver fit as a fiddle and looked blankly at me when I questioned him about autism as an autoimmune disease and about the root of Oliver's GI problems. I felt completely adrift -- and slightly assaulted -- as I dressed Oliver and gathered our things to go.
When I approached the business desk to get my receipt all of the nurses and receptionists were noticeably quiet. No one looked at us and I felt as though I were intruding on a private conversation. The nurse who had been with us earlier was standing to one side looking at her feet. "Oh," I thought. "She told them all and now they feel sorry for me." My guess was confirmed when the receptionist looked up at me with the unmistakeable look of pity on her face. I squared my shoulders once again, looked into my son's beautiful face, looked back at the woman and thought: "I will NOT accept your pity."
I took my son, whom they knew nothing about except for that goddamn awful word 'Autism', and left.
The shame and hurt and fury that I felt that day -- and everytime someone refuses to look me in the eye because they feel embarrassment or pity for me -- has stayed with me. It is burned into my psyche.
But the truth is that I was very fragile at that point. The diagnosis was still so new. And I, like so many people, knew of autism mostly from what I had picked up in the media over the years -- and that picture is, indeed, scary. But what I was having trouble sorting out, even in those early stages of grief, was that the picture that the media gives us about Autism has very little to do with our Oliver.
If the people who look at me with pity -- or who can't look at me at all -- knew Oliver, they would know why I count myself so lucky in life.
I haven't gone around telling people about Oliver. People who know us well know that Oliver has autism. But I hardly ever talk about it with anyone other than Nik, Oliver's teachers and therapists. And then of course, there is this blog, which is a very public chronicle of our lives with Oliver and the subject of autism. The more I learn about autism and the more I live and grow with Oliver, the greater my urge to educate people. I am so proud of our boy and I find myself telling more and more people. "My son has autism."
And it's not like they think. It's not like I thought.
My son Oliver has autism. And I wouldn't trade him for anything.