My husband and I had planned our pregnancy. My son was not only wanted; we wished for him. He was born on a hot summer night, cut from my belly, and placed into my arms while the cesarean drugs still pumped through my blood. He had jaundice after he was born because he had a different blood type than me. I remember feeling jealous of my husband that they shared something already.
My son was diagnosed with autism a few weeks shy of his 5th birthday. We were expecting the result; the psychologist had been very open throughout the entire assessment. The school had already deemed him eligible for autism services. This was not a Bachelor rose ceremony, the suspense was gone, but nevertheless, I did need to hear her say it more than once.
My son is autistic.
He will be autistic his entire life.
When I got home, I went into crisis mode. I made checklists, joined every autism Facebook group I could find, I signed my son up for Applied Behavior Analysis (ABA) therapy, extra speech therapy, and a social skills group. I was hyper-focused on providing “treatment” for my kid’s autism.
It took me a few months, but I finally learned that autism wasn’t the thing that needed treatment, it was my own ignorance and fear.
The initial strategies and recommendations I received focused on getting my son to speak more clearly and appropriately. Using positive behavior supports to encourage him to use the correct pronoun while pointing at picture books. This work just introduced outdated gender stereotypes, which we are still trying to unlearn.
Things started to change for me after my son started ABA therapy. One of his first goals was to get him to say “I don’t know” instead of not responding at all when somebody asks him a question. For months his first response to ALL questions was, “I don’t know.”
Another big goal we had was getting him to participate in group songs at school. In his Kindergarten class, the kids would sing and dance to an alphabet song. My kid refused to participate. It wasn’t that he didn’t know the song or the corresponding dance moves, he just refused to do them during class with the other kids.
Out of this “need” came the “Head Shoulders Knees and Toes” goal. You guessed it, every day in ABA, we worked on getting my child to perform “Head Shoulders Knees and Toes.” It didn’t work. He refused to do it for me, his Behavioral Interventionist, and Behavior Supervisor. We spent countless hours watching my child sit in the corner, refusing to sing or dance to “Head Shoulders Knees and Toes.”
As I write this now, it was evident that my son was the only sane person in this story, not the three grown adults that demanded he sing and dance for us.
It was shortly after the “Head Shoulders Knees and Toes” defeat that I canceled ABA therapy. I also canceled all the extra services and decided that I no longer wanted to treat my son’s autism. I learned about Neurodiversity and started reading books written by autistic people. I felt an overwhelming sense of relief. A simple truth became so clear to me; I wouldn’t change a thing.
Before I became a mom, I thought I wanted to have a daughter, but when I found out I was pregnant, I was surprised that my preference for a girl disappeared. I no longer cared if it was a boy or a girl because it had already happened; the sex was already determined, and I already loved my baby. This is how I feel about my son’s autism.
The weeks before we got the diagnosis (and a while after too), I might have wished for a different result. But wishing that my son was not autistic would mean that I want his brain wired differently.
I don’t want that.
My energetic, creative, beautiful child was born this way, and any disappointment I might have felt has absolutely nothing to do with him. The autism was always there, like the twinkle in his eyes and the dimples in his cheeks.
I wouldn’t change a thing.
Robin Weckerly is a mom, a wife, a writer, a member of the PTA and Chairperson of the Special Education Community Advisory Committee in Long Beach, CA.