I know you don't completely understand. I know you don't know anyone else with autism and therefore have a hard time grasping this. One thing I need you to know, is autism isn't a phase. This isn't something that Charlie will "out grow." Sure, he may learn to cope as he grows and have less intense symptoms of autism, but it will always be there.
When you see him spinning, jumping, falling, climbing and having moments of daring feats full of no fear- that's not him being a fearless boy, that's Charlie sensory seeking, that's autism. He often needs more sensory input than a typical person and thrives off of certain movements. Many times theses things are calming to him. Don't chastise him for it.
When you see him stuck in his ways and not being flexible- that's not him being stubborn or difficult, that's called being rigid, that's autism. Charlie has a hard time being flexible, especially when he gets an idea in his head or thinks something should go a certain way. Sometimes it's even hard for us to take a different route when we are going somewhere in the truck. We've endured many meltdowns on the way to the grocery store or church because we went a different route than we normally do.
When you see him getting upset because you're changing activities- that's not him having a tantrum because he doesn't want to stop what he's doing, transitions are hard, that's autism. Sometimes even the smallest of transitions can be difficult. We always have to give lots of reminders and warnings when we are about to change activities or do something new. It's hard for Charlie to change tracks suddenly. He needs time to process the change. It makes spontaneity nearly impossible.
When you see him start to scream, yell, throw things, try to break things, or attempt to hurt himself- it's not him acting like a spoiled brat, it's not a tantrum. That's what we call a meltdown. Hold on to your shorts, because it's a million times worse than a toddler tantrum, that's autism. Sometimes meltdowns can last 5 minutes or other times it can be over an hour. It will all depend on how dysregulated he is and what triggered it. Sometimes we don't even know what triggered it.
When you see him deliberately walk away from you in public (he's also been known to run)- RUN AFTER HIM! He's not doing this because he saw something he wants to look at- he sometimes tries to get away from us, this is autism. He doesn't understand the dangers of running away. When we are out and about one of us always needs to have eyes on him or close enough to grab in an emergency. He doesn't always respond to verbal redirection to stop or come back.
When you see him running and not paying attention (especially in a parking lot)- this is not him being careless, this is him not understanding danger, this is autism. This is why we park backwards in the parking spot- to keep the door of the truck as a barrier between him and the road/parking lot. This is why we always hang on to his hand or have him hang on to Sunny's vest so we can help him safely navigate a parking lot.
When you see him leave most of the food on his plate- this isn't him not liking your cooking, this is...well, we're not sure what exactly this is; food aversions, sensory issues, a complication of not being able to eat much at one time due to having a Nissen in place.....either way, we know it's frustrating when he doesn't eat, but it's part of the struggle. We are always working on this with him.
When you see him struggle to go to sleep at night- this isn't him trying to get away with staying up later, he has had sleep issues since he was an infant and it's pretty common for kiddos on the spectrum to have sleep issues, for whatever reason, this is autism. Here's a tip: he loves to sleep with someone else. We're not sure if it's the body heat from the other person that he likes or just the comfort of having someone close, but he sleeps better when he's with someone else. Oh, and don't be surprised if he wakes up in the middle of the night.....it still happens sometimes and we have no idea why. Sunny comes in handy when it comes to sleep. She provides deep pressure for him to calm down and provides that warm body for reassurance.
If he's having a tough time riding in the vehicle and starting to have a meltdown- it's not because he's impatient, his tolerance for car rides is pretty minimal, that's autism. Car rides are hard. It's why we can't go on long road trips with him. We would need to be very strategic on how long we were in the vehicle at one time, where we'd stop for breaks, activities to help him get sensory input in during the breaks, etc. It's exhausting and frustrating, especially since Tyler and I have always liked traveling and exploring.
Shall I go on? Do you need more examples? If you do, please ask. We'd rather you be educated and informed than be clueless and insensitive. You might need to adjust your expectations a little with him. We're not saying you need to give in to every little thing, but be patient and know that the way you thought something might turn out with your time with him, might not be how it really goes. That's our entire life....thinking it will go one way and then having it take a total 360 requiring us to change tactics. Know his limits. Don't discredit Sunny. She's not just a dog to our family, she's a lifeline for Charlie, an aide. She is his medical device that helps him function and find some calm in this crazy world. If you're not sure if an activity will be too much for him, ask us. We're always learning too, but for the most part we know what makes our boy tick. Don't just brush these things off as him being difficult. All of these things we described is autism. And he's not going to grow out of it, it's not going away.
