I think I have an endless supply of bullshit. I’m pretty sure this is true for everyone, but it’s definitely true for anyone who deals with chronic illness or disability. I don’t feel like burdening everyone I know with an endless saga of woe, so I’ve gotten used to talking around it. I tell myself that I do this as a favor to the rest of the world, but it’s really about me. It may or may not make others uncomfortable, but it definitely makes me uncomfortable.
When our son was very young and clearly had developmental delays, my husband and I agreed that the word autism carried too much stigma; we decided it wasn’t beneficial for him to have to carry around such a weighty diagnosis. We would simply tell people he was receiving services through the school district and leave it at that. (The only people we spoke to about autism were my in-laws and two close friends.) He qualified for services without an official diagnosis, and was able to attend a great special education preschool as well as half days at a regular program with an aide.
Also, we were very hopeful in the early days. I honestly thought he was going to wake up one day completely cured.
It wasn’t until he turned five, and the school district told us he was going to be placed in a self-contained classroom, that it finally sank in. First I tried to convince the school district that he was ready for the integrated classroom, but they weren’t buying. At that point, it dawned on us that a diagnosis of autism probably wouldn’t be any more stigmatizing than a self-contained classroom. We called The Cody Center and we scheduled an official screening.
Several months later, we had the diagnostics in hand. It was then that we finally began to tell our friends and family, including my mom. On the one hand, it was an avalanche of emotions, to finally be able to talk about it. It was also incredibly hard, especially after so many years of keeping it bottled up.
I remember going to a wedding right after he was diagnosed. The groom was a family friend. At the reception, I was seated next to his sister-in-law. I didn’t know her very well, and the conversation turned to what it usually turns to when two young mothers get seated next to each other… our children. I was seven months pregnant with our daughter, and didn’t have tons of energy for dancing. Instead I sat and pushed food around my plate while I talked to Robin. I never referred to my son’s disability, and we talked about lots of regular mom stuff.
And then my husband started talking to Robin. He started telling her about our son’s diagnostics; in fact he started talking about our son’s autism as though it were general knowledge. She just looked at me, and her look said everything, “What the hell?” We probably talked for two hours without me ever mentioning it.
The more I think about it, the more ridiculous it seems. We took something that was incredibly frustrating, and we added loneliness and isolation to the mix. We buried it, as though it were shameful to mention. Although we are socialized to not talk too much about pain, to find other ways to deal with it, at what point does keeping it all inside just make it that much worse?
Yes, social niceties are sometimes required. We can’t say exactly what we’re thinking every moment of the day, but at what point are we adding to the pain by attempting to bury it?
*In the spirit of this post, of telling an honest story, however unpleasant it may be, I also recently published Broken Toys.