I’ve typed and trashed three posts tonight.
I get so far into them, get crazy agitated, and close the window before I completely freak out. What is this, and how soon can I make it stop? Seriously.
So here’s the thing. This is my space. I get to express myself based on my experiences and my perceptions as a young adult woman (did you know that I hate refering to myself as such? I’m still the kid, in my mind) with ASD. It’s not always pretty, either… except for when it’s downright hilarious… but it is what it is, and I just report without judgment, to the best of my ability. I hope you read without judgment (meaning, don’t deem my experiences “good” or “bad,” just take them for what they are) as well.
And here’s the other thing. When you type about your experiences, you inevitably piss someone off at some point. Someone’s going to take issue with what you say. Usually, I try to avoid those subjects. Tonight, I’m frustrated enough and need to express myself badly enough that I’m going to risk it. I’m going to try to make it clear that I’m not out to get anyone in any way. But still, please don’t take me all that seriously tonight, okay? Just let me express myself.
I’m a firm believer that “mild” autism isn’t better than “severe” autism, and that “moderate” isn’t somewhere in the middle. It’s such an individual thing, you know? You might have someone who has good communication but crazy sensory issues that lead to behavior problems. You might have someone who is nonverbal but surprisingly social and has decent self care. And, you might someone who is fairly mildly affected all around, but is super depressed because he is so aware of his differences. We’re all in this together. It’s not a competition. Support, validate, believe.
But tonight, this whole “moderate range of autistic disorder” thing is on my nerves. Why would that be? It’s because I’m not mild enough to just blend in with everyone else, regardless of how difficult it might be. I mean, I kind of can to look at me, but the minute you greet me with a hug and I shout and swat at you, you’ll kind of figure that something’s up. I’m not saying it’s easy for people with AS/HFA to blend in, at all. I’m not even saying it’s beneficial. It’s just that right now, I wish I even had the option. Also, there are groups for people with AS galore in Pittsburgh, but I basically get lost and agitated in them. The only way I could potentially participate would be to type, but they go so insanely fast that it just isn’t a good option.
And then, at least here, there are groups for people with severe disabilities. There’s even a group at my church. And frankly, I feel patronized, and I hate to feel patronized. Just because I make no eye contact and repeat myself and all those things I do, it doesn’t make me five years old. And then, there’s the issue that people who patronize me tend to want to touch me, which leads us right back to where we were last paragraph.
I’m different enough to the point that people notice and think I’m either a brat or a jerk… but not different enough that they think I might have a disability. Last weekend when Mom was chatting with the older lady in Petsmart and I was whining and interrupting and poking her, I wouldn’t doubt that the woman thought, “What on earth?” Or when I yell at the mall, or when I swat at the doctor’s office because she touched me. When I interrupt or ignore (I feel like I never get in between and get it right), when I never ask, “How are you?”, when I forget to say thank you. Brat, brat, brat. I actually thought I was a brat for many years.
Moral of the story? Lydia’s a grump tonight. (I told you I can be funny).
But no, really, the moral of the story is that people need to be educated about all degrees (and that’s not really the right word… what I mean is, all variations) of autism. About people who work their butts off to seem typical all day, then go through hell when they get home. About people who are profoundly affected and cannot be left alone. And, about people like me, who may not seem “disabled,” right away, but who just come across as cranky, bratty, and agitated, more often than not. People who can be pretty verbal (or other days, not at all) but will never ask you how your day was. Who will type books to you online and then run when they see you in person. Who will carry on a conversation with their mothers but the second they step under the Macy’s lightning will turn into a monster. People who wear sunglasses in the grocery store and then go silent when they get inside.
As I often say, all I want is what you want. I want a world where I can be free to be myself.
Not so different after all.