When your child is first diagnosed with Autism, there is a lot of emotion to unpack. Guilt, sadness, and confusion are all just some of the early reactions that hopefully work their way out of your system over time. Another emotion that no one talks much about though is paranoia.
What does the world think of someone like my son? How will they treat him? How will they treat us, his family that loves him? Will this seemingly harsh reality become even harsher through the years?
Unfortunately, a lot of what I had to go on was random stories from social media and news sites. Even more unfortunate is that word “Autism” seemed to attract the type of tales that we’d consider “heart wrenching.”
You find yourself reading about things that go beyond upsetting. Stories that trigger every button and touch every depressing nerve scroll on an almost constant loop. I found myself going from wondering how I could raise a child with unique needs to wondering how many people I’d have to fight throughout his life.
I’m not being dramatic here. One of the first stories I read after Lucas’s diagnosis was about a grandmother who received an anonymous note in her mailbox claiming that her grandson with Autism should be “kept inside and away from normal children.” It went on and on in painful detail and the site made sure to reprint every agonizing word. It was one of the most appalling things I had ever seen a person do to another. By the time I was done reading about this act of cruelty, I was so wound up that I didn’t know what to do with myself.
I wanted to drive right to this woman’s street and go door to door looking for the still unidentified culprit. I obsessed over the idea that someone could get away with something like this. It was rage in its rawest and purest form. I craved justice for that family and, indirectly, for mine.
That’s the other natural view of this emotional landmine. What if that family was my family? What if someone wrote that about my son? How insane would I become? I kept picturing myself as Brendan Fraser in School Ties, standing in the street, waving a crumpled up letter while screaming “Cowards!” As the new father to a boy on the spectrum, it felt like Autism took away so much more than my son’s ability to do certain things. It felt like it would take away my peace, calm, and security as well.
If I could go back now, I would tell myself how that horrible story of horrible people does not represent the bigger picture of what it is like to have a child with Autism.
And the me from then would tell me the me from now that I had just read a hundred other stories about Autism that were just as a bad.
And the me from then would be right.
The biggest problem was that the anonymous letter family wasn’t the only story I saw like that at the time. There were countless more. I read tales of kids being denied graduation because they had Autism or locked in a room at their school by abusive teachers or bullied by kids in the town. Even the uplifting ones had sad premises. As the dad to a boy with Autism, seeing a headline like, “Town Buys Autistic Boy New Bike After His Old One Is Vandalized”, doesn’t make me rejoice at the new bike. It’s about wondering what type of terrible people in the world would vandalize a kid with Autism’s bicycle and what I would do if someone did that to my child.
In other words, you don’t have to search far to find miserable stories about Autism. They’re everywhere. If you are just starting on a journey and basing your future largely on example, it may seem like you’re starting off on the worst path imaginable. It’s a world where people leave anonymous notes for your kid who won’t be allowed to graduate and have his bike thrown into a river. If you’re lucky, maybe the cheerleader will ask him to the prom and post it for likes on Youtube. Ugh.
You don’t get to read a lot of stories about the man I sat next to on the plane back from Disney World. Lucas was pretty excitable and, at seven, his outbursts can be a lot more shocking than they were when he was toddling. As I tried to quiet him down, this stranger to my right leaned in to me.
Hey. Don’t worry about keeping him quiet for me. I am totally OK.
This man wasn’t an Autism specialist or pediatrician. He was a construction worker with little to no experience with any special needs children. Yet, for the duration of the flight, he spoke to me about his own kids and asked questions about mine. When Lucas reached for his bag of cookies, he immediately handed it over.
And when Lucas reached for his second bag of cookies, he gave them too. That one was a bit embarrassing. This kid eats a lot.
The point is that this man exists and this story happened. Was it an anomaly? Nope. The trip before that, Lucas’s ears must have popped because he had a pretty large meltdown when we touched the ground in Florida. As he cried, the people in all the aisles near us began watching and I wanted to shrink into the cup holder. Then one of them said:
Does he have Autism? My niece has Autism.
When I answered “yes”, suddenly passengers all around us joined in with stories of those in their lives with Autism. Waiting to deboard had turned into a scene from a TV show where everyone within earshot takes part in the discussion and those further off fade into the background. It was a surreal moment and the embarrassment that I was sure was coming when he started crying turned into a kind and comforting memory.
You didn’t read about that happy plane story online when it happened. If the other passengers all got together and beat me up, I’m sure you’d have read about it. Those are the articles that get the most traction. It’s about people getting dragged off of flights spitting and screaming. It’s not about the ones who give their cookies to non-verbal children.
Being the parent of a child with Autism is not all stressful and angry. It’s also not all calm and happy. It just is. It’s a part of your life and, just because the abundance of articles you read are about the worst of times, it doesn’t mean those are the only times. In fact, those moments of cruelty are far less common than any others. The only time they’re not is when you’re scrolling Facebook.
Just because you’re an “Autism Warrior”, it doesn’t mean you’re going to have to put on warpaint and constantly battle with your tribal weapons. Most people don’t want to hurt you for no reason and, if they see you are caring for your child, will usually respond with kindness. It’s been my experience and the experience for most people I know in a similar position to mine. So ease your mind, Autism Warrior. You don’t always need to have your spear drawn and ready to strike.
But maybe keep it sharpened. You know, just in case.