When my son was diagnosed with Obsessive Compulsive Disorder, I was a mix of emotions. There was a grieving period it seemed, the loss of “normal” due to the fact that I had put too much weight on the diagnosis. I learned quickly that it meant nothing except knowing how to help in therapy, at school, at home and sometimes, medications.
But in terms of the other diagnosis’ that had been presented to us, OCD seemed “easy”.
All of this is a pretty way to say that I was the asshole that was relieved to know that I wouldn’t officially have to join the parents in the “that” Club; I was relieved my kid didn’t have autism. As if it would have changed anything that I felt about him, or our life.
As if it’s a bad thing to have autism.
Mostly, it was a belief that I simply wouldn’t be capable of parenting a child with autism. I’ve consistently thought this I’ve had near meltdowns of my own when things reach a fever pitch with my son. I’ve thought it as I’ve witnessed my other friends parenting their own children with autism.
“I can’t do that,” I’d say. “I’m so glad I don’t have to.” Which is ironic, because my parenting reality was no different than theirs. I just chose to ignore the similarities.
OCD seemed like a smaller mountain to climb, for me to navigate as his mother, and as a family. I felt like we’d narrowly dodged a bullet, and gotten lucky in our diagnosis.
It has nothing to do with luck. Favorites are not played when you sit in that room with your child’s doctor. No one showcases each potential diagnosis’ like prizes on the Price is Right and you get to pick the best out of the three windows.
That’s not how it works at all. Ever.
Recently, our beloved psychiatrist retired which meant we had to fill that gap in our necessary support system. A visit was scheduled with a new psychiatrist during the summer when there would be less chaos. It was nothing special; we were meeting briefly for introductions, to rehash medications, and discuss some issues that had come up.
Or so I thought.
30 minutes into the session, there was a dramatic shift in the room.
“This feels a lot like an assessment,” I thought quietly as I watched my son converse (and sometimes not) with this new doctor.
Then there was a moment. I can’t explain other than to say I saw the doctor lean back in his chair, his eyes tightened slightly and his jaw line clenched. Meanwhile, my son was stretched out on the chair, half on, half off, only giving one word answers, his hands flitting sporadically.
The doctor turned his body to me,
“Let’s go back and do a full family history. Including pregnancy.”
My mind raced trying to think of excuses for my son’s behavior —
“You are new! He’s uncomfortable! He had a really busy morning. He was fighting with his sister. His breakfast didn’t get made the way he wanted. I interrupted his routine to bring him here!”
When I realized that was a moot point, I decided I could get defensive or I could just roll with the punches, as one does when you have a special needs child.
It took another 30 minutes before I did the math in my head and realized the solution:
We’d been in the office for almost 1.5 hours before he even said the words, even before he’d formed them in his mouth. He could have just nodded at me, handed me the prescription, smiling but not really and said, “Alright. See you in 6 weeks, not in 3 months.” I knew we were, my son, my family, officially card carrying members of “that club”. The same one I’d vehemently decided we would never be a part of.
A week later, after I’d just defused a situation involving my son, another child and a yelling mother, a light went on:
There is nothing wrong with being autistic. I wasn’t treating my son any different, because he wasn’t. Perhaps more importantly, there’s nothing “wrong” with him. Of course, not everyone sees autism that way. The lens in which his father and I view him, doesn’t always extend to everyone. My aversion to a spectrum diagnosis had nothing to do with autism itself. It was the fact that I knew I’d always been fighting for the world to see my son the way I do, and eventually, he’d be doing the same.
One day, he’ll notice.
He’s going to notice the stares at the grocery store, the raised eyebrows by other parents, the whispers and the harsh statements made by adults who should know better and kids who aren’t so kind. That’s really why I didn’t want to be in that “club”. I desperately wanted to cling to whatever was left of our “normal” because I knew the world was never going to see him quite the same way because of that one word, that one label.
The world has a lot to learn about autism.
I do too.