“How old was I when I started to talk?” Nigel asked me one day last week as we drove to the grocery store.
“You were five when you started,” I told him. “But it took several years of learning before you could talk as well as you can now.” I waited for more questions, but that was all he seemed to want to know at the moment. I asked him if he could remember how it was for him before he could talk, if he remembered what it was like when his hearing was so sensitive that many sounds were painful to him, and he said no. “I don’t remember those days.”
But the fact that he talks now, and that he goes online to watch YouTube videos, makes me worry that someday he might stumble across the “I Am Autism” video. And since he is aware of the fact that his parents separated within a year of his autism diagnosis, and then divorced, how will he feel when he hears the ominous voice saying, ” . . . I will make sure that your marriage fails“? His self-esteem is fragile enough, and his own acceptance of his autism has been difficult at best. This video would destroy any gains he might have made. I couldn’t stand for that. Nor do I ever want him to feel responsible for his parents’ divorce.
So tonight, while relaxing on the couch, I gently broach the subject by asking him if he’d ever seen any videos about autism. He tells me that he hasn’t looked, and I say that’s fine. Then I describe the “I Am Autism” video. I tell him that it takes the challenging and difficult aspects of autism and talks about them in a threatening tone. That it blames divorce on autism.
Nigel says, “Probably the people who think that are just insecure.”
“Yes, Nigel,” I say, stunned. “I think you’re absolutely right.” Where did that come from? How could he instinctively know that? His keen, sensible awareness shocks me. But I have to continue. “I just want to make sure that you would never think that your autism was the cause of your dad’s and my divorce.”
“I don’t,” he states.
“That’s good,” I say. “Because your autism had nothing to do with the divorce.” And then, because we seem to be on a roll, I go on. “I don’t want your self-esteem to suffer because of videos like that. Autism is challenging and difficult sometimes, as you know, but it’s part of your personality and what makes you so unique. But I know sometimes it’s hard for you to accept it. I remember a year or two ago, you would get upset sometimes and say that you hated the autism and wanted to rip it out of your head – ”
“Well, that was just a phase,” Nigel interjects.
“You mean you don’t feel that way anymore?”
“No. I feel fine about it now.”
I reach over to hug him, and he stiffly accepts. “I’m so glad to hear that,” I tell him, my voice catching. For years, autism had caused self-loathing for my son. Maybe something like that should have been mentioned in the video. Maybe it should have been mentioned that autism is not just a struggle for the family members. It’s an even bigger struggle for the ones who have it. Yet they continue to find ways to work with their autism, not against it. And with time, therapy, and a lot of hard work, they can even come to accept it.
I know that we still have a long way to go. I know that the social issues are going to be a continuing source of strife for my son, just as the sensory issues and language deficit used to be. But there’s one huge thing in place that’s going to help with that – his self-esteem. And that’s one good thing about the “I Am Autism” video – it was the catalyst for an amazing conversation with my son. Not only do I feel better knowing that he doesn’t blame himself for his parents’ divorce, but he revealed to me that he has accepted his autism. He no longer feels that it makes him defective. He knows that it makes him different, and he’s okay with that. I feel fine about it now, he says.
The air in our home is not the same tonight. A threshold has been crossed, a truce declared. There is a calmness I don’t recall feeling before. A new ease. Contentment.
I smile, remembering. “Just a phase” he said. – Oh, how I love him.