I want to share what it feels like for Alek, and kids/adults like him with similar disorders. It’s funny they use that word, “disorder”. That’s exactly what it feels like. The world, only not in the typical order it is for most people. Just read, you’ll understand.
You walk into a store; let’s say it’s a supercenter, like Walmart or Target. Notice what is around you. Bright lights everywhere, various loud noises- machines beeping, people talking, announcements blaring, bright colors all around you, people moving past you in a whirl.
Normally you can just focus on the task at hand and shut most of that out and get through your trip, navigating your way around the store with objectives in mind.
Now let’s say you have lost the ability to tune out everything happening around you. Sounds are louder; people seem to move faster, the lights seem blinding.
Your head is now buzzing with the overwhelming influx of sensations. You now cannot focus on any task. It’s become too much to handle. You either want to bolt, or you see one thing in the store you think you need and can manage to get before this assault of senses takes over.
Your mind isn’t coming up with the steps on acquiring this “something”. You start to get upset. Your mind is so over stimulated, you can only focus on what is in your direct sight, in your hand, or the last coherent thought you had.
Now take away the process that happens in a person’s brain over years of “maturing typically” that has given you the ability to tune out these things and remember the steps to completing what feel like such thoughtless tasks.
You are feeling hungry and tired now, but there is just so much going on, you have lost the words to articulate your needs. You’ve lost track of time. It feels like it’s been an eternity because of how much you have had to process.
You see the people you are with are getting worried and frustrated. You are very in tune with emotions on top of all of these other senses. You get upset. Very upset.
Do you know how you would react then? Would a kind word and a helping hand getting you away from the onslaught be just the thing you needed?
This is what it feels like to my four year old child that is in the autism spectrum, all the time, since birth. He has never had the ability to coordinate his thoughts in certain ways that enables him to complete, what are to you, some very basic tasks. His senses are heightened because of his inability to focus on more than one or two at a time.
It’s like pouring a liquid too quickly, through a funnel that is too small.
You may see a little boy that can’t control the volume of his voice, that isn’t able to handle sitting still and remembering all the steps to control his movement to eat a full meal. Things are spilled, he’s squirming and nervous. He has very intense moments that are only meant to be affectionate but may turn out to be what I call, aggressively affectionate. I appreciate any love that he wants to give me.
You see a boy who “should be able to _______ by now”. You see that he has tantrums in public places and at home when guests are over.
You see your own child and think “if ____ did that, I would have shown them who is boss!”
Just remember the experience you just had above with me in the store. Remember he is just a little boy who doesn’t have the filters that you do. He sees you and can feel you passing judgment. So can his exhausted and protective momma. We have lives to lead to. He is just as exhausted as I am….
Now, I’ve learned ways to avoid situations like this (story boards with our activities for the day, brief trips to run errands broken up into breaks, a distraction or something that will hold his attention so he is not overwhelmed, etc.) but sometimes, I’m just like you. There just isn’t time. He’s going to melt down. Don’t judge. Don’t gawk. Don’t pity. I’ve got this. I just need a smile or a kind word. He could use one too.