At a recent Saturday night church service, we were sitting at round tables, maybe eight seats to a table. At the table beside mine was a family in our church; they have three boys, and the younger two are on the spectrum. As the pastor was asking for prayer requests from the congregation, the youngest, who is 9, fell off his chair (still not all too sure how that happened…).
The f-word exploded.
Yup. He was frustrated.
Little guy immediately had it out for the chair and began to beat on it with all he had. His dad got down on the floor with him and helped him to calm down. He sat back with his family… in a different chair, of course. His original one was a little worse for wear.
People handled it well. The service continued on. No one stared, no one fussed. It really just wasn’t a big deal. There are more than a couple of families with autistic kiddos in our fairly large church family, and overall, I find that my church does a great job of including people of all abilities and disabilities in everything. Inclusion, not segregated groups.
I’m not sure whether it was the age of the kid who got frustrated or the fact that it was at church, but the reaction was pretty much nonexistent.
Stores and malls are tough on the senses. The shiny floors and fluorescent lights really, really get under my skin. I get itchy, dizzy, and hot flashes. So, when I drop things (always!) or when hangers tangle on the racks… I tend to growl, loudly, and make known my intense displeasure with whatever it is… “I AM SO FRUSTRATED!” This is when I sort of anticipate my mom sorting the hangers out for me. She usually does, but if she can’t hear me or isn’t nearby, I either call for her or get even louder, growl again, stomp my feet, and generally just get really, really frustrated with things being so very… UGH!
Yeah. Any guesses how the shoppers nearby react to an adult acting like that? Hint: it involves a lot of nervous smiling and walking the other way.
When it’s a 9-year-old who hates his chair for making him fall, people realize he’s got stuff going on and give him grace. But when it’s a 25-year-old, I’m not quite sure why people seem to expect her to magically grow out of her own neurology. A kid with autism grows into an adult with autism. I’m intelligent and fairly independent, but even so, I STILL HAVE AUTISM! I cannot step outside my own neurology and suddenly react to situations like a typical person would. I can learn skills… and yes, I do use them. But I’m never going to be typical. I thank God for that, not because typical is bad by any means, but because being typical would mean being someone other than me. I may be a handful, but I don’t want to be anybody else!
I don’t want this to sound like a whiny post, complaining about the way the world treats me. It’s more just putting out there something I’m thinking about, which is how do I handle these situations? They’re a great opportunity to educate. But, generally if you say to someone, “I have autism…,” they immediately assume that, if you are able to advocate for yourself, then you must not really have it. I really don’t know what I look like to other people… I have my own style and body language, but I think it sends a message of individuality more than disability. Hidden disabilities are hard. I have a lot of serious health issues… but I look like the picture of health. I’m strong, my color is good, and if it weren’t for the various tubes and wires, you would never know. Even those who know that I have some stuff going on generally don’t understand the extent or degree of my conditions. And that’s good, most of the time, but, whether it’s health or autism, it’s upsetting when I am having a hard time and I feel like people don’t believe me.
Not to mention that, if I am frustrated enough to be yelling at hangers, I’m not really able to switch gears and advocate for myself. I’ve tried the explanatory business cards, but I never have them ready when I need them.
So, I turn to my keyboard and write this post. Do you hear me, world? I’m telling you that having a hard time with frustration is part of my autism, that you don’t need to be afraid of me, and that people like me are everywhere. And THAT… is a good thing.