I could tell you the whole truth about me, at least, all of it I have come to terms with and understand. I could be 100% honest with you about all of my fears and faults.
But I can’t tell you the whole truth about my family, my neighbors, or my friends. Those truths are more subjective and not always mine to tell.
The truth about my autistic son, for instance, would depend on the person you asked. Even asking me would not get you an accurate answer because I’m not him and I don’t know everything he thinks and feels. Asking him will not get you a straight answer, either. I could write an entire post of truths and convince you that my son’s autism makes him a super hero of perfection. I could write an entire post of truths and convince you he is a horrible human being. He is neither. Trying to paint him as either of these things takes away his humanity, the very thing so often overlooked in autistics.
Overlooking the humanity of children in general is already too common. We forget that kids, like adults, don’t just follow rules for rules’ sake. We feel, we fear, we desire, we misunderstand, we struggle to define our self and space. We screw up, sometimes on purpose because, “To Hell with it,” we say.
The other day at OT, my son and I waited in the lobby. I sat in a chair while he stood facing me. He held handfuls of my hair and crumpled it up in a ball and twisted it around his hands while saying loudly, “Hoopa-hoppa-doopa-doppa, I did your hair!” He thought this was hilarious. My hair has no style, so I didn’t care except that it hurt. If I had made a big deal about it, there was a chance he would have started hitting my head instead, or pulling it harder. He would have laughed harder, too. When things get “bad” everything becomes “more”. It’s a coping mechanism he has in response to stress. So, I choose to steady my tone and try distracting him instead of demanding that he stop. I have learned the art of restraint and diplomacy out of necessity.
The therapist came out and asked how he had been doing. I said things were still going great, but he had come home from school with a couple of frowny faces due to acting out in frustration. I said, “It wasn’t anything intentional.”
She said, “Oh, I know that. I don’t think he could ever do anything bad intentionally. He’s always so happy and cooperative, really trying to do what I ask of him. He’s a sweet little boy.”
Yes. That is a truth. What she said is sometimes a hard truth to see about him. But, it’s there.
Nearly every time special needs people go out in public, they get stares. People wonder, “What is wrong?” Or they think, “How miserable that life must be.” No one stops to stare at autistic people with curiosity; wondering how intelligent they might be, how witty, or how kind.
Why would I publicize the parts of my son’s life that only further the pity and ableism? I’m not going to tie his hardships like a bow on his head for all of the world to unwrap like a tear-jerker novel, the tag saying “please follow this link to donate”. (There is no link to donate here.) Most of his hardships, like yours, don’t benefit from being exposed by someone else.
You might say, “But how will people know what autism is really like if you aren’t willing to share with us the gory details of the cleanups and tantrums?”
Well, the cleanups aren’t his. They are mine as the parent and not very fun. And telling you about them might make you feel sorry for me, but it wouldn’t help you understand autism. The same might apply to the tantrums, each for its own reason. I could tell you how hard it is for me, and you could pity me. But, I don’t want to perform for pity in a mask of autism awareness. If I want to talk about my own hardships, I’ll just label that parenthood.
This is the hurdle information needs to clear. Is it going to educate people about my son’s humanity? Is this information going to allow people to see him objectively in ways that move beyond pity and fear to allow for better understanding? Am I projecting my own assumptions onto his behavior? Believe me, parents are the worst for assuming they know why their kids are doing things, and I’ll admit to often being proved wrong. I mean, I am the mom who completely ignored an entire year of blatant signs that he was autistic. And then after diagnosis, I was the mom who was convinced he would NEVER say “Mommy”.
Instead of wrongly projecting myself as an expert in autism parenting, I like to think of myself as an unusually humbled parent. I have learned through my son that I can’t always know why things happen or how they will turn out. This acceptance of my own limits of understanding has affected my parenting with my three girls, too; how I view every single person I encounter has changed. When things go badly, I try my best to understand why and figure out my role in making it better. But, I am willing to accept that I may never know the answers. I don’t have ESP.
The person my son is is affected, but not defined, by his autism. His autism is uniquely his. His way of being, perceiving, experiencing the world is unlike anyone else; as is yours. He is a complex person with feelings and thoughts. He will grow up one day in the world we help educate about his diagnosis. If you are a parent of an autistic child, please consider your words before you tell the world what your child is like; consider your own limits of understanding. It’s easy to say how we, the parents, feel and what we see. The world is already uncomfortable with our children. They already gawk. If we have nothing new to offer these strangers who read our words, are our terrible truths promoting autism awareness or propagating the painful assumptions that our children are less human?
And, it doesn’t make it more acceptable to end a dehumanizing account of a traumatic episode by saying, “But I love him anyway.”