Where the journey started for us was understanding the challenges my brother faces. There is no one standard definition of Autism as it differs across individuals. However, what follows is my perspective of the challenges my brother faces that is based on my observation of my brother. This is an emotional, personal perspective … not a scientific one.
Picture yourself in this story:
I find myself in a carnival, amidst bright lights. Noise, chaos, and brightness engulfed me. The chaos was pounding on my head, like a hammer. I did not know where to focus on nor where to turn to for solace. I turned into myself. I started fumbling with my fingers, saw the comforting sight of a light blue ball bobbing up and down, and started murmuring to myself to shut off the chaos I could not understand,
I was feeling hungry. I saw my favorite cotton candy hanging from a stall. But, how should I get it? This was a foreign land. I did not understand their language easily. They did not understand me either. I pointed to the cotton candy. They misunderstood that I wanted the plush teddy bear next to the cotton candy. I shook my head. I pointed again to the cotton candy. The man at the stall said something in a gruff voice. I think it was likely how much to pay. But, I knew not how to pay or how much. I looked blankly, pointing at the cotton candy. A frustration was building up- I couldn’t do a simple thing as get a cotton candy. The man’s laughter at what I was failing to communicate was not helping. Soon, I gave up on the cotton candy… though the frustration was building up.
Dejected, I was about to leave. Suddenly, a stack of carefully lined lollipops collapsed in the counter. I was alarmed. I could not stand the disarray on the counter. But, what could I do? I frantically pointed at the lollipops. The man got fearful that I was going to grab the lollipops without paying for them — he called for help and two people grabbed me at either arm. I tossed and turned in their grip – upset at not only being misunderstood but also trapped for no fault of my own. I got angry and started protesting violently. I was dragged away from a world I did not understand. While it may seem I was dragged away physically, I was also dragging myself mentally. I began to block out the world around me and creating a world around me — a much safer world where I understood myself.
This is an imaginary scenario … but putting myself in the shoes of such scenarios helps me better understand the challenges my brother faces all the time.
The challenges are ones we are familiar with — distractions, difficulty understanding (like a new language would be for us), the frustration of being misunderstood, etc. However, with my brother and other Autistic individuals these challenges are at an even more heightened level.
Overload
My brother lives in a constant world of stimulatory overload — he hears every little noise, he sees every fleeting movement and change (including the shelf behind him I left open by mistake), and he has an overly keen sense of smell that he can tell what ingredients I used by one sniff.
When you have all these distractions, imagine how difficult it must be to be able to process what someone is telling you or to focus on what you are doing? It reminds me of one time, I was working on submitting a major presentation. However, I could not concentrate— I could hear a loud conversation in the background, the tv was running a disturbing news headline, and I could see my pile of stuff fall from a corner. There was too much going on for me to focus and that is the world my brother lives in all the time— a world of distractions and overload.
The processing challenge
Add to this world of stimulatory overload, the fact that he cannot quickly process our language — it is a double whammy. It is almost like he is constantly in a foreign land, where a different language in spoken. Imagine the pressure of not being able to quickly understand when frequently being demanded to respond? His frustration reminds me of the feeling of being lost in a country I am traveling to where I do not know the language — except the place my brother is lost in is his home.
We experienced a recent example of my brother having this processing challenge that was very telling. He was trying to ask us to move the floor mat in the kitchen but could not access the word easily. First he said — “lotion”, then “foot” , then “mat.” He connected the mat to his foot , the foot to the lotion that we put on it. It shows how complex the linkages of processing information were for my brother. It is not that he could not understand language; but rather, the way he processed the words was different.
A world of isolation
This overload and inability to process forces my brother to look into himself and stay within himself as he cannot easily interact with those around him. In a situation where he cannot express himself in our language, he develops his own language of behaviors and anxiety to gain our attention. He is trying to say something with his anxious shouts and behaviors— while we dismiss it as a behavior that needs to be corrected.
There are times I cannot express what I am feeling — and this leads to immense frustration. My brother feels this frustration all the time.
Frustrations
And this also leads to a downward spiral of frustration — the frustration of not being understood and constantly being corrected and directed. As he has grown older, this frustration has accumulated. He lives in a world of constant guilt, where he is worried he has done something wrong or will lose something because of his “mistakes” or being misunderstood. This has accumulated into protests of anger.
The “pressure cooker”
Overall, he is in “pressure cooker” type environment— the pressure of stimulatory overload, not processing quick enough being misunderstood, and not having control. A pressure of multiple hammers pounding on his head.
And even worse, he is in this high-pressure environment without much support — as we do not understand his language, and he does not process our language easily. Hence, it is almost like we have had to decode another “language” to be able to better understand and connect with my brother. Over the years, we have made inroads in decoding this language through a range of discoveries.
