Confession time, k? It startles me when I come across an autism blog I’ve never even heard of. I mean, duh, right? Of course there are zillions more blogs than I know about… but in the world of autism, posts make their popularity rounds. There are the super bloggers, of course, for whom most every post in popular. Honestly, I rarely even look at my stats until someone asks me how many people look at my blog everyday. The answer? Some days, 50, and others, nearly a thousand. I don’t get excited about all that. Not to say I didn’t at one point, but now, it’s just… it’s what it is!
Anywho, I was going back and forth about blogging regarding an incident that happened today (it really was quite minor and probably shouldn’t even be referred to as an “incident”). But then, and I don’t remember how, I stumbled across the Thirty Days of Autism blog and found this post.
And truth be told, I didn’t make it all the way through. I kind of have the attention span of a fruit fly, which, combined with memory issues (when I read large chunks of texts, I don’t remember where I started so I come up in the middle, totally confused) and the fact that it just doesn’t all sink in sometimes… but the take away from that post is the ideas behind calling someone “high functioning.”
It’s amusing, really, because when I say I have autism, people often say, “You must be very high functioning then!” And then, when I say I have mild autism/HFA, clinicians say, “Um… you’re not exactly HF, sorry…” I’ve long tried to categorize mysself, but at least for now, I’m over it. I have classic autism, no modifier required, because regardless of which one you use, someone will find fault with it.
The thing that stuck out to me in that post, though, was the piece about comparing people. That’s what it’s all about (doooo the hokey-pokey!), isn’t it? It’s about comparisons. Comparisons to a list of criteria, or comparisons to another autistic, or comparisons to a typically-developing person.
I’ve always been one for comparing. I wanted to know how I measure up to others, because my innate sense of self was utterly non existent. So, short of knowing that I was thisser than so-and-so and thatter than such-and-such… I had no idea who I was.
But that was then, and this is now. Now, at least most of the time (barring the past week or so where I’ve been struggling a bit), I know who I am. I know of no other way to describe myself than “I’m Lydia.” I know what that means, what that entails, and I like that person. So, the days of comparing are out.
The next bit of story involves some background info, or it won’t make as much sense…
See, I don’t blog about every aspect of my life. Someone today asked me if I write about health issues, and I don’t. Unlike autism, which has it’s awesome side, chronic pain and type I diabetes and migraines, well… not so much. They kind of suck, actually. I view my blog as my own little piece of the world. I’m honest with you, but I do leave some things out, because who wants to read about blood sugars and pain?
Fact is, what started with a bad (by “bad,” I mean, locked and then limited range of motion, and very painful) hip when I was maybe 14, has become chronic joint pain. It used to be that as long as I was warm, I didn’t hurt, and as long as I stood up every so often, I didn’t hurt, but now, at least for roughly the past month, I just hurt.
I take a therapeutic swimming class three times a week as a way to get exercise and work on my joints. I LOVE swimming. I do laps in the beginning (and hey, I couldn’t swim across the pool 6 months ago but did 25 laps today)… but if the water is chilly, everything hurts.
And so, as we were doing push ups on the side of the pool, I was wincing because my wrists hurt. I was asked, “Do you hurt, Lydia?”
“Right now my wrists but more or less everything to some degree.”
“Well, stop doing this exercise, and we’ll go deep water and you’ll loosen up.”
And so we did…
“Do you hurt now?”
“Just an ankle but it’s better. I’m tired of hurting; I’m 23!”
“You have to keep in mind that so many people in this world hurt so much worse than you. You have to remember that you have it good.”
Comparisons, again. They hurt more… does that make me hurt less? No; in fact, today is the worst day of pain I’ve had short of having a broken bone.
Some people are more autistic than I am. Does that make my struggles less? Some people are less so. Does that make mine more?
I hear from parents who are afraid to talk to other parents whose children are more severely affected because, “At least we don’t have it that bad!” It’s not a matter of good, or bad, or more, or less…
You deal with what you deal with. Especially within autism, the struggles of people who appear “HFA” or those who appear “LFA” or whatEVER… they’re different, and that’s all. Yes, you might have a 16-year-old who doesn’t speak and is not toilet trained… but you might also have a 12-year-old with “mild” autism who is cutting and starving herself because no one understands her and she doesn’t know why, since her parents thought it was no big deal and decided not to tell her.
I can’t say anymore on this. But, please; enough with the comparisons.