Tuesday, April 11, 2017

The Day My Son Learned He was Autistic

I should have told him sooner. 

I know I waited too long. 

Ben has been diagnosed as autistic since he was four years old.  He’s now eight.  Four years was too long to wait to tell him about his diagnosis.

It’s not that I didn’t try to tell him.  We tiptoed around the subject.  We talked about different kinds of learners and different kinds of brains.  We’ve talked at length about his strengths and weaknesses.  I just never told him that society’s name for his unique brain was autism.

I'm not sure why I hesitated.  I believe that a person needs to know his or her diagnosis.  I believe that labels can be useful tools to help explain a person’s strengths and limitations.  I believe if we ignore the label then we are denying a very real aspect of the person.  Here is a great article that sums up my feelings well.  

Maybe I was waiting for the perfect moment to tell him.

Maybe I felt that he wasn’t ready to understand a concept that so many adults struggle to truly understand.

Maybe, just maybe, the truth is that I waited because I know that autism is still a devastating word with a huge amount of negative energy surrounding it, despite many of our best efforts to change that.  I think the truth is that I wanted to keep him in a safe little bubble just a little bit longer.  I think I was worried that he’d hear messages that autism is a disease and a burden, and he’d equate that to himself. 

Regardless, I should have told him sooner.

I waited too long.

We were in the orthodontist’s office, getting a consultation on how to fix his crooked front tooth.  The orthodontist had just told me that fixing Ben’s teeth was going to be a long journey (not the quick fix I’d secretly hoped it would be).  I was trying to follow his dentist-speak about expanders and phases while I mentally calculated just how expensive this was going to be. Meanwhile, Ben happily occupied himself with is favorite coloring app on my iphone.  I had given him the distraction because I didn’t want him worrying about our adult conversation.   I should have remembered that even when he isn’t looking, he is listening.

“We’ll have to see how he handles taking the impressions, from a sensory standpoint, to know our next steps.”  the orthodontist explained.  “He is on the spectrum, correct?”

“Yes,” I answered.

“What’s the spectrum?”  Ben piped up suddenly.  And then I knew that I could avoid it no longer.  It was time to have the conversation.

I could feel the orthodontist’s eyes on me.  I could hear the unspoken question, “He doesn’t know?” An uncomfortable silence filled the room.

“What’s the spectrum?”  Ben asked again, more insistently this time. 

I gathered myself together and answered his question as simply and honestly as I could.  “The spectrum means the autism spectrum,” I explained to him.  “It’s a way of talking about how your brain works.”  He accepted the answer and went back to his coloring app, but later at home I revisited the conversation.

“You know how today you found out that you are on the spectrum?” I asked.  “Do you want to talk more about it?”

“Okay,” he said.

“Being on the spectrum means you are autistic.  It means that your brain is super skilled at doing certain things, like how you memorize your states and capitals or can do math facts in your head.  However, it also means that some things are really hard for you, like dealing with certain noises or waiting your turn.  It also explains why you feel things more deeply and cry more often than others.   Does that make sense?”

“Are you on the spectrum?” he asked me.

“No, I’m not-“

“Oh, no!” he exclaimed.  Ben is super-attached to me and holds me on a very high pedestal.  His love for me is fierce and all-consuming.  The fact that I’m not on the spectrum too was probably the most difficult part of all for him to accept.

“There are other people you know who are on the spectrum, though,” I reassured him, and named some of his autistic friends.  “There are some really smart people in this world who are on the spectrum.  In fact, many famous mathematicians and scientists are autistic.”

“Really?” he asked.

“Really!” I said. 

And just like that the conversation was over.  A couple of days later, Ben was getting very frustrated while we were waiting in traffic.  “I know it’s hard to be patient,” I explained.  “You’ve just had a long day and are ready to be home.”

“No, mom,” he explained.  “My brain is stuck right now.  It’s because I’m on the spectrum.”

A few weeks after that, I was humming a song while Ben sat next to me on the couch, playing his ipad.  He turned to me and said, “You know that singing tickles my back.  It's because I’m on the spectrum.” 

Maybe I shouldn’t have waited. 

Maybe I should have told him sooner. 

I don’t love the circumstances in which Ben learned of his autism diagnosis, but I am glad that he knows, because now he understands the reason why he does things differently and feels things differently.  Now he has the words to describe what he is thinking and feeling.  

It’s because he is on the spectrum.

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