When I tell others my son has autism, most of the time they have no idea what I mean.
I can honestly say that prior to my own son having autism, I never knew what it was like.
If I thought of autism, I would think of Albert Einstein or an adult who memorizes a dictionary. I would have never imagined when I found out my son was autistic that it would be the way it is now.
I never imagined this.
It is so obvious to me now that I did not know what autism was or that not a single person around us did either. As my son’s behaviors got more and more difficult, we just thought it was a phase he was going through.
No one ever mentioned autism.
I randomly watched a Facebook video about a mother and her autistic son as I was scrolling through my feed. That is how I knew. Not even his doctor mentioned it to be a possibility without me bringing it up to him. I never considered my son to have a disability even with how unusual his behaviors were. Until the moment I was sitting in my garage on the steps scrolling.
That was the first time it ever clicked.
As I look back now I can see how ridiculous it was that we never considered it was anything more than a phase. My son was chewing chunks of wood out of our entertainment center. He jumped on his crib so much he blew out the bottom of the crib before he turned two years old. My son never looked at us or acknowledged us at all. For the longest time, I thought he was annoyed with me not allowing him to do the things he was doing and that was why he did not look at or respond to us. We even thought he was hard of hearing for a while. I never in my life had heard of that being a symptom of autism. The non-stop running, the non-stop jumping at any and all hours of the night, the fact he can spin around in circles for two to three minutes at a time and never be dizzy.
I oftentimes wonder how many others out there were so blindsided by finding out their child had autism, like I was.
My son was diagnosed with Level 3 Severe ASD. My son is severely affected. Even his significant behavioral issues never prompted the thought because I was so unaware and my community was so unaware—we never knew.
We just thought he was being bad.
I wonder how many more years it would have taken my son to get a diagnosis had I not seen that video.
After he was diagnosed, I still did not know what autism was. I had no idea that my son was being diagnosed with something that will affect him and our family for the rest of our lives. No one ever told me during this appointment that this diagnosis was forever. No one ever told me therapy might not work. No one ever told us what that diagnosis meant for us. It has taken me years of research and trial and error to figure out what we know now. To understand our lives and what is happening.
When I tell others that my son has autism, I can tell they have no idea what I mean either.
My neighbor was outside asking Jackson some questions, he knows Jackson has autism and is nonverbal. He kept asking Jackson questions expecting a response; I reminded him Jackson is nonverbal. He said, “Yeah, but he will talk soon.” I let him know my son Jackson is five years old and supposed to start kindergarten in the fall, “So, man, I really hope so.” He was obviously shocked. Jackson still wears diapers outside, so he looks like an overgrown toddler. He also in many ways acts like a toddler. My neighbor clearly had no idea how old my son is, his cognitive level is that of a 1- or 2-year-old child.
At my last job, I told my boss my son had autism and she said, “Oh, that’s no big deal, we have a guy at my law firm who has autism.”
I always just smile and nod. I never really know what to say. How to explain to them what our autism is like. There are no words in that moment that could possibly explain it.
In a million posts or in a million years, I would never be able to explain to someone exactly what it is like.
My son is severely autistic. I think what people do not realize is not all individuals with autism will have jobs at law firms, function on their own, or even talk.
People truly do not know the type of pressure they put on me when they say these things. Underplaying my son’s disability, making me feel like some story on social media they have read, should be my story.
That is not our story. We aren’t even close.
We are alone in a room full of people all of the time. I tell people our story because to me it was so unbelievable what was happening to us because I and all the people around us were so unaware. The stories you read, the memes people share—they aren’t us. Our world is so hard to describe. It is so elaborate, not to mention every person is an individual on their own path.
Please stop assuming, just listen.
All I can do is tell you what I see as an outsider looking in.