A friend asked me the other day if I ever feel sad on my autistic son’s birthday. She talked about the melancholy feeling of trying to find presents that would engage her son—he’s in his early twenties. She sent me a photo of a toy for a child and she said, “I wonder if Noah feels trapped in his body, and when he opens them and sees I’ve selected something appropriate for a 3-4 year old feels upset or embarrassed.”
The idea of our children being sad or feel shame about who they are is probably one of the most torturous things a parent can think about. My autistic son Nat’s birthday is in three days. He will be 35. Although his birthday does not make me feel sad like it did when he was small, it does have the power to make me feel hollowed out, like a wizened jack-o-lantern, especially when people still ask me what he would like.
What would Nat like? The simple answer is, I don’t know. The things he likes are activities, like playing basketball, bike rides, or baking. He does not want tangible things. He never did. Balls, trucks, dinosaurs—all great to put in his mouth but other than that he’d rather have the wrapping paper. I used to despair over that, but my sister, his godmother and one of his staunchest defenders would say to me, “So? He doesn’t need stupid toys to be happy. So what?”
I tell people to get Nat candy but that feels like giving up somehow. He shouldn’t be eating that much candy. I don’t even know if he thinks he can eat it without asking—and he does not ask for things very often. Part of the way his autism manifests itself is through a deep passiveness; it is almost as if he does not realize that he can initiate things, that he is the owner of his life.
People ask me, nevertheless, because they love him and they want to know him. They think I have a secret pipeline to Nat’s inner life, and to be fair, I suppose if anyone did it would be me. But the fact is that I don’t, and I never really did. All I have is what I observe and how I interpret that. My hard work understanding and connecting with him. And my wishes. My husband Ned and I disagree gently about how much Nat may know about himself, his life. Ned doesn’t think that Nat perceives things like how different he is from others: “I don’t see anything from Nat that indicates he notices those things,” he said recently. I do know what Ned means. Nat doesn’t smile about things he apparently enjoys. The “social smile” others use naturally is not something Nat does. He smiles to himself about things that only he knows about. I would love to know, I would give up a limb to know definitively what makes him smile, to have him share that with me. What I do know is, opening presents does not make him smile. In fact what he does is unwrap and then figure out where the item goes. New pants go right into the pants drawer. A book about baking goes right into my bookshelf. A new basketball rolls away.
But that doesn’t make me sad. Not anymore. Because Nat has lived long enough that I understand and accept his difference from other people. He’s lived long enough to know that he should get cake and presents to unwrap for his birthday. But it’s about the routine of birthdays, rather than getting something he truly wants. What hurts sometimes is having to think for the others in his life, to come up with a picture of Nat that they can relate to (Nat the Baker, Nat the Sports Guy) rather than them trying to do it themselves. I understand how lucky Nat is to have people who love him. I see all the love and feelings of responsibility behind their questions. And I love them for it. But at the same time, I wish that the knowing of Nat wasn’t just up to me or Ned, his father.
So it is the disconnect I feel from others in his life that bothers me around Nat’s birthday. Not Nat’s unknowables. Their questions make me feel like the sole arbiter of who Nat is. That is a lonely place to be. I want others in his life either to forge a relationship with Nat themselves—call him, Facetime with him—or come up with their own ideas. Or just put money into his trust fund in case Social Security and Medicaid go away.
What I really want, above and beyond all of this, is for Nat’s happiness to not rest solely on my husband’s and my shoulders. I want people to come to his basketball games and see for themselves how he smiles there. I want people to call him or even better, message him because he is much more comfortable with typing than verbally answering. I want people to know him themselves, without my guidance.
I want people to understand that he doesn’t need toys and things to be happy; none of us do. What we need is to have people in our lives who get us and love us for our differences.
