Autism is complicated. High functioning, low functioning; a literal spectrum of symptoms and behaviors. My son has moderate to high functioning autism. He is verbal and integrated into a mainstream classroom. With the right amount of accommodation and support, he continues to expand his abilities.
My son’s autism does not look the way people may expect autism to look. And, sometimes that is complicated.
We are often told that our son’s behaviors and actions are “not autism”, they are just the same behaviors of other children his age. After all, all kids are wiggly. All kids struggle to listen. All kids struggle with social norms.
When people say these words to me, it stings. It stings way down in my soul.
We are different. And, different is hard. I get it; I really do. These words are your attempt to make a connection to me. To show me that we are actually quite similar. Because if my son’s behaviors are less autism and more typical boy; then you and I and our children are not so different after all.
But my son’s diagnosis is not about you. And, it is not about me either. It is about him. About his truth. His life. And, I have accepted that. It was a tough pill to swallow, but over time I learned to accept it. Because resisting it was holding me back, and it was holding my son back too.
I accepted that my son has autism; that his symptoms are real. Not typical. And, now I need you to do the same.
When you tell me that anything “is not the autism” you prove just how little you understand this journey. In some way, on some level, to some degree, every single piece of our life intersects with the autism. Because some day, too long ago to remember now, the autism infiltrated every corner of our life.
There are no clear defining lines in this life. Everything blurs together. The autism did that. It took things, my things, out of neatly organized compartments. It mixed them all up, taking extra care to touch each and every piece of our life. And once everything was tossed around and mixed up, once everything was touched by autism, I could hardly recognize the pieces.
So we started from the beginning. One piece at a time we put everything back into a compartment. But everything was changed. Everything was different. Things did not fit the way they used to. Because after autism touches something; it changes. That is something I have come to know all too well along this journey.
You may not be able to understand that, and that is OK. I am thankful that you do not know this firsthand. But I do. And I need you to trust me.
It is the autism. It is all the autism.
I know that my son does things that are typical boy things. I know that my son does things that are typical five-year-old things. I know that my son does things that are typical brother things. But those things, those behaviors, do not exist inside of a bubble. They exist inside of my son. And, my son has autism.
He is a boy with autism. He is a five-year-old with autism. He is a brother with autism. And no matter how typical the things he does and says may seem; they are not typical. They are someone with a brain, very different from our own brains, working over-time to control the behaviors and sensory impulses that feel normal to him. Working so hard to mirror the typical behaviors of his peers. To be who he thinks the world needs him to be. And in those moments he is far from typical. He is exceptional.
Every single day he works on goals and behavior plans developed with typical and socially normal behavior in mind. And he sees that. His beautiful, brilliant brain knows exactly what is happening. And in so many moments of so many day he rises to the occasion. He does the work. He takes a step outside of his comfort zone to enter our comfort zone. And it is not fair. It is not fair or typical or just. Is it autism.
I could give you countless examples of all of the ways my son is not typical. All of the moments when he did not act in a typical way. But, I am not going to do that. I should not need to do that. I need you to trust me. I need you to trust me when I say that there are pieces of this that you cannot understand.
And, I need you stop telling me that my son’s behaviors are not autism.
I am not mad. I am not in denial. I am not frustrated or resentful. I am just a person on a journey that I do not understand trying to live my truth. Advocating for my son. Learning to take care of myself along this journey. And recognizing, that sometimes that means clearly asking for what I need.
So this is what I need; I need to stop spending time and energy defending my son’s diagnosis. I need to take every bit of that time and energy and focus it on standing beside my son as we navigate his diagnosis together. As we move forward along this journey. One day at a time.
I hope we can all agree that is a much better use of my time.