It Wasn't Autism
I’ve been wanting to write this post for awhile now, but haven’t been able to find the words. It isn’t easy to admit some of the shortcomings we have as people, especially when we talk about mistakes we have made with our children. When I think back, sometimes the guilt over the mistakes feels overwhelming. But I have slowly learned that when I share our story, others are more likely to share theirs, and in connecting through shared experiences there is strength and hope... and growth. So here it goes.
When Max was little and newly diagnosed I thought a lot of the things he was experiencing were just a part of his autism. When he had meltdowns or tantrums I thought, “This is it. This. Is. Autism.” When he bolted and ran away from me in crowded places, I thought that was autism too. When he never slept, refused to leave the house, ran around at warped speed, or threw things, I blamed autism.
“Autism, autism, autism” my heart pounded with each difficult situation.
“I wish he didn’t have autism” my heart silently ached.
The first time we went to the dentist with Max was several years ago. I should say we tried to go to the dentist. Maxim stepped one foot into the waiting room and immediately fell to the ground. He screamed and flopped and refused to move. With some extra prompting he eventually got from the door to the play area, but his behavior went from hesitant to hyper. He yelled, grabbed, and manically shoved toys at two other children playing quietly.
“This is autism,” I silently breathed.
When the dental assistant called our names he refused to go in. He wailed and ran for the exit, and when I tried to hug him and prevent him from running away he thrashed and screamed even louder.
I whispered, “It’s ok buddy. You’ve got this. You’re going to be ok.”
I tried to convince, “There are toys and a treasure chest.They are just going to look at your teeth like we practiced.”
I begged and lessened the expectation, “Please little buddy, you don’t have to do anything but walk in the room, and then if you still want to leave, we’ll go.”
He refused. And then he got quiet.
Suddenly he ran. He sped down the hall and into another dental room where he saw someone getting their teeth cleaned. He stood there stunned and then screamed and ran again.
“I really don’t like autism,” my heart cried.
Looking back I can only imagine what this experience looked like in his eyes. The different noises and smells, the bright lights and strange equipment, the new sights and machines, all like some kind of assault to his sensory system.
Children without sensory processing difficulties get scared at the dentist. Heck, I even get nervous going to the dentist myself. How much more nervous must Max have been!
When I caught up to him drenched in sweat, I scooped Max into a hug and we left. We didn’t make it past the treasure chest that day, and when I looked at my wild eyed, terrified boy I thought, “I wish he didn’t have autism. He’s scared and confused and it’s autism’s fault!”
But it wasn’t.
Back in the early days I blamed autism every time I watched Max struggle. It was easy to do, but it’s a trap that you don't want to let yourself fall in, because it is misleading, unhelpful, and wrong.
Max didn't have a hard time at the dentist that day because he had autism. He had a hard time because he was scared, really scared and no doubt overstimulated and completely overwhelmed. His sensory system was unregulated. He was just a little boy without the ability to verbalize what he was feeling.
Not long after that day at the dentist's I realized that blaming autism didn’t help Max. I needed to learn new ways to support him and recognize he had a different set of needs. Trips to the dentist would have to be approached differently, many things would.
Autism meant Max saw and processed the world in a unique way, he learned at a different pace, and he had individual ways of doing things. I was going to have to think outside of the box and consider experiences from a much different perspective. As parents we help our children learn, grow, and get through difficult situations. I needed to do the same thing for Max, even if I didn’t initially understand why he was reacting the way he was.
It took me a little bit of time after his initial diagnosis to learn this, and it took a lot of conversations to make doctors see it too. Unique and challenging behaviors aren’t just “autism.” Behavior of any kind is a person’s way of communicating that something is going on inside their body, their emotions, or their mind.
When Max bolted from the dentist's office it wasn’t right for me to blame autism. When he threw cars, banged on his ears, or perseverated severely on things, it wasn’t enough to simply say, “Oh, he has autism.” It was up to me to find out why Max was acting the way he was, to make sure he was safe and healthy, and that if he needed help we were giving it in ways that made sense for him. There were times I had to push really hard to get doctors to listen.
“It isn’t just autism. You need to check if it’s his sinuses. He might need an antibiotic.”
“It isn’t just autism. He is bolting because he is soooo anxious. We need to find a way to address this. Please help me to help him feel better.”
“It isn’t just autism. Check his ears. I don’t care if he just got off the antibiotics. You need to check!”
“We can't brush this aside as just autism. I think he’s seeking sensory input. How can we help him do this safely so that he doesn’t hurt himself?”
I had to put aside my own fear of confrontation to make sure he was seen as more than just a diagnosis, but before I could do that I had to see his behavior as more than just autism myself.
Max has diagnoses of autism, ADHD, a developmental disability, and anxiety just to name a few. But he is more than these labels, and the diagnoses give a name to his challenges but they certainly don’t explain them away.
Over the years I learned that when Max is scared, anxious, or nervous he has a different way of communicating it than I am used to. Sometimes he doesn’t seem scared at all. Now I know that when he laughs wildly and then bolts or becomes extra hyper and impulsive it isn’t “just autism” or even his ADHD.
He is anxious.
Hoarding dinosaurs in different places like the bushes or even the fridge means he’s stressed or scared.
Refusing to leave the house can mean he is tired, and an increase in aggressive behaviors can mean he is getting sick or he is overwhelmed and sad.
Although autism does make him gloriously different, it is up to the people around him to understand that in so many other ways he is just the same as you and me. He feels scared, tired, happy, sick, and sad just like anyone else. It is up to us to see past the diagnosis to the boy inside who is trying to communicate in a way that is uniquely his.
It is up to me to show the world that, yes, he's autistic, but also just a boy just like any other who expresses himself differently, the best ways he knows how.
Now when challenges come, I know it isn’t autism’s fault. If we look and listen with our hearts we find ways to support Max and get through. When we seek as a family to understand instead of placing blame on a diagnosis, the challenges help us expand our hearts and learn. In fact, we don’t need to place blame at all because even the hard parts, maybe especially the hard parts, seem to deepen our connections and allow us to grow in knowledge and love.
Now when we visit places and Max has similar reactions to the one he had at the dentist that day several years ago I don’t sigh and wish autism away. I take a deep breath, remind myself that “We’ve got this,” and together with Max find ways to get through and make sure he is ok.
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