I’ve been meaning to write this for a while now but you know… LIFE got in the way. I have come across a lot of different ways parents who have children on the spectrum operate. Some love ABA, some hate it. Some believe gluten free and other dietary restrictions are necessary, others do not. Some believe in and swear by medication others refuse to even use the word.
One thing though I have never come across in all my book reading, blog scouring, face-booking, tweeting etc is a parent who “doesn’t discuss the autism.” Well, until now.
When I say she doesn’t discuss the autism, I mean just that…. they (the parents) have simply chosen not to discuss autism with their son. Their son, he is verbal. He is 10 and a Gate student. In the “not discussing it” with their son this also means they don’t discuss it among adults either for weary that their boy may overhear something.
I have to say, this encounter was pretty strange for me.
My son has known her son for a very long time. Her son, when his ABA therapist was over, would invite my son to come and play together during their pre-school years for social skills work. The boys ended up at different elementary schools and summer camps. Simply by chance the boys ended up at the same camp this time. Its been 4 years since we’ve seen them.
When I ran into this familiar person, I asked Steve, “Do you remember him?” Steve replied, “not really.” I wasn’t surprised, I’ve noticed that very few details have stayed in Steve’s eye from when he was a small child. Thinking that Steve would like to know he had someone around that was like him, I said, “Well, he has autism like you. You two were very good friends at one point. Maybe you two can be good friends now” and his mother gasped. “Ohhhhh she says to Steve, but we don’t talk about that okay. So don’t use that word around him.” All Steve asked next was, “Does he have ADHD too, mom?” So I replied softly, “No, he doesn’t just autism but they don’t talk about that ok. Can you not bring that up? “Ok Mom, I won’t” he said.
So Steve trotted off to his buddy whom he doesn’t remember and the mom and I head out. Once out of earshot of the boys I HAD to ask the question. “What do you mean you don’t talk about it?” I am thinking in my head… not talk about it… I can’t stop talking about it. I talk to anyone and everyone that will listen and even some that don’t about it. I live and breathe this every day. This THING, autism, has invaded our home, our everything… how can you NOT TALK ABOUT IT….. I stayed quiet to listen.
She replied matter of factly, “Oh that’s easy, we decided we were not going to discuss it for fear of him using it as a crutch or excuse. That’s all.” Uh oh… here goes my mind again: that’s ALL… THAT’S ALL… that’s not all. How can that be ALL. That is no where NEAR ALL. What about how he feels inside? What about… and WHAT ABOUT………. and so I said oh, okay and walked away then got in my car. What else could I do, I was about to blow.
Steve has over the past year been coming to me more and more asking me why he is different. What is happening? Why can’t he do what his brain tells him to do? So it clearly was time for us to sit down and have this conversation.
I am adopted and it was never kept a secret from me. I have never kept the word autism a secret from my son. Its not a bad word. Its a matter of fact.
At first I thought it was my misunderstanding. That I had suddenly missed another HUGE issue in the autism community and I didn’t want to start a fight. When I got back to my office I sat down and really started to think about this. Have I not read enough? Is this really a thing? I know it is in the adopted community… but autism community? There are people who just will not tell their child what is happening to them inside their bodies?
I don’t know… so I am writing this bewildered still, even after a couple of weeks. I just don’t think I understand the concept of not telling your child about something happening inside of them.
So…. am I seriously sheltered, nieve and misinformed? Is this a “thing?” If you do know of why this would be a thing, can you please enlighten me? Clearly I need it, because I really do not understand.