I read a fascinating article recently by K at Floortime Lite Mama, posted on the Hopeful Parents website (both sites you should check out, btw). The article, “Why I don’t hate autism, and neither should you?” piqued my interest.
I read the words K wrote, nodding along as if we were having a conversation. I have had that conversation, in fact, with many people. I love finding a kindred spirit in this crazy community we’ve found ourselves a part of, someone who can laugh at the absurdity of it all. I smiled and nodded, that is, until I reached the bottom. I was wholly unprepared for the anger in the comments section.
Some of the commenters were in agreement and supportive. Some didn’t agree, but understood her point of view. The others, though, were downright angry and offended. Angry that someone dare tell them to not hate the thing that had wrought such havoc on their lives. Offended that there are some who willingly embrace autism as just another facet of reality. Angry and offended that someone dare tell them they need to embrace neurodiversity and not be hurt and sad and disenfranchised and devastated by autism.
There are a lot of families touched by autism who cannot see their way past the anger. They cannot not hate autism. I get that. I was there. There are days I find myself screaming the same thing at the top of my mental lungs – I. Hate. Autism.
But in truth, I don’t.
As you are well aware, my family approaches life with a smile and an eagerness to laugh. We do not hate autism, rather, we are thankful for the perspective it has given us. We are acutely aware of how “lucky” we are in that our child is not profoundly autistic, and we do not face a lot of the same challenges other families face daily. This does not change the fact that we still deal with autism. There is no “good” or “bad” autism, just the same autism, in varying degrees.
There are days I want to pull my hair out. There were weeks on end over the last few months where I thought we were backsliding to the early days, and we might never have a “normal” life. You know, a life that doesn’t involve 4 people always bowing to the will of one. A life where an older brother doesn’t constantly terrorize his two younger brothers every time they dare play with a toy he wants (which is whatever they have at any given moment). A life that doesn’t have me counting down to bedtime from the minute I wake up every morning.
In addition to the trials and tribulations within the confines of my own home, I watch my friends dealing with their own ASD and SPD children, some with more than one in the home. Autism doesn’t just affect the family itself, it affects the entire community. It takes a village, you know, and if the village is full of angry, hateful people, what does that tell the children?
Many children with autism do not appear to have outward emotion, but they do, in fact, feel. And they perceive how the people around them feel, sometimes more intensely than we give them credit for. Do we want to raise these individuals to hate the very thing that defines them, or to accept it and learn to adapt?
I’ve said it before, and I’ll say it again: autism is infuriating, inconvenient, aggravating and exhausting. Autism is also incurable. That leaves us with a very important decision. Do we live a life of anger and resentment, or do we accept that we have a more complicated life than expected and deal with it?
I am in no way suggesting that a life with autism is a bowl of cherries for either the individual or their family. What I am suggesting is we have a choice in how we deal with it. And we have a responsibility to the individual with autism in our lives to set an example.
A life unfolding
So what will you choose? I want Jack to laugh and be happy, and to see his autism as just another thing to deal with, like my terrible eyesight or his daddy’s left-handedness. No, they’re not the same thing, but I can’t see any harm in Jack owning who he is and going with it.
Having a child with autism means having autism in the family. You don’t have to love it, but life might be a little easier if you didn’t hate it.
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