Autism Unexpected: Devastating?


My son Jack is six and a half now and has been officially “autistic” for nearly two of those years. I remember sitting in the room when a doctor gave me his diagnosis, and smiling. I had fought for that diagnosis for two years. I had spent those two years trying to tell his teachers and the people from the county who were responsible for giving him services and interventions that he was autistic.

I’ve spent a lot of time over the past four years fighting and teaching and crying and hoping, but mostly I’ve spent those four years loving my very wonderful son. My goal with him is not to ultimately get him to “pass as normal,” but to be happy and proud of his autistic self. Yet I listen to and read stories by other autism parents and I see diagnoses referred to over and over as devastating, and I wonder, am I wrong not to be more upset by my son’s autism diagnosis?

Don’t get me wrong, autism can be a very scary word. And I’m not saying that it’s wrong to be devastated by such a diagnosis. In fact, when Sam, my oldest, was young he used to line trains up obsessively. And he would layer them in his toy dump truck and rant and rage when one wouldn’t fit right. And I was terrified that he might be autistic. All I’d ever heard were horror stories about autism.

Fast forward three or so years to when we made Jack’s first appointment to see a developmental specialist. I distinctly remember a relative’s blunt question: “For autism?” In my mind, autism was there. It was a big, looming cloud in my imagination, but still her words hit me like a slap. She was a med student and I think she was looking at it as a medical situation. For me, it was my child. My small, vulnerable child. And at the time I don’t think I had accepted the fact that he might be autistic.

But then I watched him with other kids. Or, rather, not with other kids. And I read about autism. And I talked to his doctors. And I talked to specialists that I hired to observe him in school. And when it became real for me, when I understood that I have an autistic child, my reaction was not, “Oh my God, what am I going to do now?” It was, “Aha! So much makes sense.”

I do know that my family is very lucky to have such a mellow, communicative, autistic child as Jack. He is friendly, cuddly, and lovely. I believe that he has a bright future ahead of him. I know that not everyone in the autism community is in the same situation. And I do not pretend to speak for those people. But for our family, Jack’s autism diagnosis was an open door, not a cliff.

I’m not looking for a cure for my son. I don’t need him to recover from his autism. I do need him to learn how to work with it. I need to help him develop skills to compensate for those that don’t come naturally to him. I need him to know that I love him more than he could possibly imagine, just as he is. His autism, his “quirks,” are a big part of what makes him the amazing, wonderful, sweet boy that he is. And I am so proud of who he is.

I don’t begrudge devastation in others. And I don’t mean to imply that I have it more together than anyone else. I don’t. And I’m sure there will be many devastating moments in Jack’s life. But there have been in mine also. And yours. And we all learn to work with what we have.

I just wish that the word “autism” didn’t carry so much fear. I wish that other mothers entering this world didn’t have to be so scared.

I think there needs to be more voices out there saying that autism is not the end of the world. It can make it harder, and there are things to be compensated for, but autistic children (and adults) are valuable, vibrant, exciting members of our world. In my mind, an autism diagnosis for my son doesn’t signify a dead end, but rather the beginning of a different path.

Originally published December 15, 2009 at Autism Unexpected.