Because… Autism

I must finally admit to myself and the world that I’m tired. Physically and mentally exhausted.

For the last 15 years of my 17-year-old son’s life, autism has dictated the mood, comfort, décor (or lack thereof) and decibel level of our home. Severe, non-verbal autism has robbed my son of the ability to communicate effectively or calmly and replaced it with banging, hitting, throwing and aggression.

It’s as if my son’s development has frozen in time – demonstrating behaviors matching a two-year-old temper tantrum. No matter the circumstance, he has learned that pounding incessantly on walls, doors, counters or repeatedly smacking himself, our defenseless dog or his family members brings the world to a halt with all attention directed his way as we work to decode the mystery of what’s ailing him or what he wants. Why, because…autism!

Trust me, we’ve tried all the suggestions of ‘experts’ … ignoring the behavior, giving him countless communication devices and methods, responding to him with a calm, soothing voice, removing every item within his reach and barricading him into a more confined space to stop the room to room destruction loop. Nothing changes.

What used to be manageable, mild noises and slaps on the arm have evolved to the potential of holes in walls and doors and smacks so hard they leave a bruise. We can thank puberty and hormones for the increased ferociousness of the behaviors.

My husband handles the chaos and constant bursts of noise much better than I do. My patience is thin and temper short. I spent my own childhood navigating through a very loud, chaotic household and swore that I would never tolerate my adult home to be that way… yet here I am, living it again because… autism!

Every day, and it’s EVERY day when my son hits me or pulls my hair, I’m broken hearted and think to myself does he even like me? It’s truly shocking how quickly things can go downhill. One minute he’s smiling at the dinner table, seemingly enjoying his food and then suddenly, he swipes the food to the floor and smacks me across the face.

I’d give absolutely anything to know what is going through his mind at the very moment he has an outburst. I can only imagine the frustration of knowing exactly what you want to say but your mind and mouth aren’t cooperating. I go through so many emotions and thoughts while watching him feverishly pace the house, pounding on everything in his path. Is he in pain? How can I help? What does he need? Could he stop this behavior if he wanted to? That last question always weighs on me. Sometimes I watch his facial expressions and it sure seems like he’s enjoying the havoc he’s wreaking based on the smile plastered across his face. The louder the noise, the bigger the grin. Other times, if we yell out “Hand down” or “Don’t hit” he recoils his hand very quickly, clear on the instruction given. Deep down I know that he doesn’t enjoy his body’s incessant need for aggressive, physical touch. I’m certain he wants to control it, but he just can’t because… autism!

The constant, daily banging is taking a toll on all of our mental health. The level of anxiety in our home is palpable and each of us teeters toward the edge of our breaking point on an hourly basis. Because of autism, we are all suffering to some degree – my son just wants to be heard and we would love nothing more than to hear him, in a quieter, more constructive way.

I lay all of this out and illustrate this picture of our daily life not to complain or frighten those of you who are just getting started on your autism journey. Your situation may never look anything like ours – it may be filled with the sounds of cartoons and giggles or much more violent and destructive.

The point in being honest is that regardless of how much hair I’ve lost in the palm of his hand, shots to the face and body I’ve taken or aspirin I’ve consumed to squash my pounding headache, at the end of each day, I go to bed at night holding no grudges or negativity toward my son. I know that he doesn’t want to live this way either and would apologize profusely if he could, but he can’t because… autism!

I love him and will continue withstanding the brunt of his frustrations all while never giving up on helping him find his words however that transpires. He just wants to be understood and comforted – that just looks a little different for our family, because… autism!