One day. If I had one wish what would it be? One day to see autism through the eyes of my son. One day in his world with autism.
I’ve often wondered how Jonathan perceives the world around him. There is so much stimuli in even the most common experiences. We typically process these throughout our day without a second thought or hesitation. That is until we encounter something that assaults one of our senses in an unpleasant or overwhelming manner.
Truth be told we all have certain idiosyncrasies or responses to things that annoy us yet not others. Maybe it’s getting certain textures against your skin, or sounds like nails on a chalkboard that make you want to cover your ears. Certain smells, while pleasant to others, may be offensive to us. Even the way we view things can be perceived very differently through our own eyes as opposed to others. I have often remarked there is a little autism in all of us.
I have attended many biomedical conventions and much has been discussed about how people with autism perceive through sight, sound and other senses, often described as being hypersensitive. And for those with autism, the word sensory is often used to describe their experiences. However, that word has almost become overused if not commonplace in some uncommon ways. For example, if you touch a hot stove, it’s a reaction to the heat. It’s not sensory, though your senses just told you you’ve touched something hot, and you won’t likely repeat the error. Sensory isn’t something you turn on and off or can stop. It is with you always, and the onslaught and reactions from them are very real and overwhelming each and every time. My experience in the classroom is that often the word “sensory” is used to describe every little behavior or reaction a student has to virtually anything and everything around them. While behaviors can result from sensory overload, not every behavior is the result of sensory issues. But for those who truly have sensory issues, the world must be quite overwhelming and even unfriendly at times.
For Jonathan, certain sounds are almost intolerable. Sounds we take for granted like a dog barking or a baby crying. On more than one occasion, I have felt myself tense when either of those situations arise because I know how unbearable those sounds are to him. The other side being he has a very high tolerance for pain, so when he is sick or not feeling well it is challenging to know if he’s actually ill or struggling with a sensory issue—which can mimic pain at times—especially with regard to auditory.
I will never forget Temple Grandin describing what a hat felt like on her head when I attended a biomedical conference in San Diego. She said it felt like someone was putting barbed wire on her head. The thought made me cringe, given that we lived in Wisconsin and during winter, hats were a must. After that, I switched to earmuffs. She mentioned that for people with autism it’s like all of your senses are being bombarded at the same time, and she actually referenced being at the conference as one. Standing in a room with all of the voices, the clinking of glasses, footsteps, people shuffling papers, microphones clicking on and off. These sounds all came at her with the same intensity and velocity, and it was hard for her or any person with autism to filter them out as you and I do. I can’t even begin to imagine how that must feel day after day after day. Overwhelming is an understatement!
Try as I might to head off things that I know will be challenging for Jonathan, like using noise canceling headphones or avoiding certain places where I know noise or sound will be uncomfortable for him, it’s never enough. Even my best attempts and proactive strategies can’t turn off the world for him. I can only do my part to try and make him as comfortable as possible. Without inside information I will never know what that assault on his senses is like or what bothers Jonathan. My eyes are the only window I have to his world and it’s a very small one.
I often think about what I could learn if I had just one day to think, feel, process and understand the world of autism through Jonathan’s senses. Would I do things differently? Only if I had the opportunity would I be able to answer that question. For now I try to do what I can to help him be as comfortable as possible knowing I will never fully understand what a day in his life is truly like.
One day I hope to find out. One day I wish to view his world from the inside out. Maybe one day, I will get my chance.