A friend of mine, who has a kiddo with Asperger’s, was posting about the oh-my-goodness-no-she-didn’t-oh-yes-she-did vaccine controversy. One mom commented that she thought “any of those diseases” would be better than “what her son has to deal with.” For me, there’s not a far jump from that kind of thinking to “better dead than autistic” (which I have actually heard people say, erm, write). ”Those diseases” were deadly… they killed millions. But, oh, that would be better than autism. When I made known my feeling offended, she said that, oh, but I don’t mean YOUR autism. You’re oooobviously sohighfunctioning and my son he is basically, you know, not human, or something, right? I mean, he’s ten and not potty-trained and he’s nonverbal, but I can see it in his eyes that he hates his life so obviously he would die to be normal.
Seriously this time… oh, NO. She didn’t.
First, I pointed her to the writings of people who are intensely affected by autism… who are, like her son, nonverbal and may have struggled with activities of daily living. Most importantly, I showed her that there are such people who are very content with who they are. I didn’t say it, though I wish I would have… that maybe what her son hates is the way she treats him like he’s a nonthinking vegetable, when, in fact, he’s a very capable little boy. Maybe she baby-talks to him when he’s writing poems or designing who knows what. Maybe he wants to be a super-hero. Maybe his favorite color is purple and she makes him wear blue. I have no idea. But… neither does she. I am convinced that every person has within himself the ability to communicate. Speak, maybe not, but there are so very may ways to communicate that don’t involve mouths and voices. We have to find what works for that person. Think you’ve tried everything? I can be pretty creative, so try me. No promises, other than to do my best for you.
Autism is often about deceiving abilities. My friend attends a program designed to help develop motor skills. The young woman working with her told her to pick a story book and write a sentence about it. My friend is 20 and has autism and, well, she looks young, and socially, she acts younger than her age. But, see… the girl is on grade level, academically. She’s read Shakespeare. She writes and edits, as in, to earn money. Yeah, jobs.
See Spot Run…
“My words fly up, my thoughts remain below: Words without thoughts never to heaven go….”
Thankfully, she is good-natured and she and her mom noted the incongruity as something to be addressed before she starts next year. Simple fix. I would have been insulted, visibly so. I would have felt patronized, and, well, you already know how I feel about that. I get that it’s hard to accommodate people like my friend and I… because we’re really not our chronological ages in every way, and yet, we don’t like to be all-out patronized. It’s a tough balance to strike.
Here’s a secret, though… actually, two of them. First: it’s totally possible. There are many people in my life who do a great job of accommodating my needs but honoring my intelligence. Second: effort is obvious. If you are trying and goof, hey, plenty of grace and absolutely no hard feelings. If you’re simply too lazy, or even too uppity to think people like us matter enough to try… that doesn’t sit as well. Some people might give you a piece of their minds; me, I’ll avoid you like the plague and grit my teeth through every interaction. So, really, no harm done, right?
Oh, wrong. First, that robs us of what could be a really neat connection between the two of us. You miss out on getting to know a girl who will upside your ideas about more than a thing or two, and I will miss out on learning from what you know and do best as well as growing socially by new interactions. Many might find that a paltry loss, but it makes me sad. I’d rather the two of us put our heads together and work out what we need to do to respect one another. We’ll both be better for it.
So, that situation set aside (although, we can never really set it aside because it’s so insanely important and deserves whole books on the subject)…. the other issue I took with the mom’s comment was with respect to the fact that, just by my posting, I was obviously super-duper-high-functioning and thus could not identify with anything her son goes through.
Bold, underline, italicize… Functioning labels suck.
I developed the idea, as a little kid, that everything in this world has a job to do. People have many jobs, and complex ones at that, so we ought to be forgiving toward people who fumble and foible a bit, since they’re trying to juggle so very many different jobs. But, hangers? They have one job, which is to hold clothes. So, when a hanger drops the same shirt sixteen times in the five minutes I’m putting away laundry, I’m liable to say, “Hanger, you suck at your job.”
As do functioning labels. Their only job is to tell you something about a person in a nugget.
Here is another nugget intended for the same job: “Lydia is a young adult with autism who excels verbally, struggles with changes in routine, and likes cats.” Great job, nugget! You just gave everyone a really clear idea of my areas of strength, those of weakness, and my interests. A+ for you.
Here is another nugget: “Lydia is high-functioning.” Sorry, nugget, but you don’t cut it on several levels. First, that statement isn’t even true all of the time. The first nugget is always true; this nugget appears true, usually, until, you know, we change plans and then it’s, uh, not-so-true. Second, this nugget really isn’t very informative. I’ll give him a generous C on validity and a D on breadth. You really don’t learn anything at all about me from that little tidbit. It’s just a label, like autism is a label. If you hear that I have autism, how much do you really learn about me? Squat, is how much, because every person with autism is totally unique. A label, like HFA or LFA, really isn’t any more helpful. But a super-quick overview of strengths, weaknesses, and interests? That’s great info for anyone to have about a kid!
Now, even if high-functioning were a good way to describe me, all of the time (it isn’t), and even if it gave us helpful info (it doesn’t), there is a major logical fallacy in the mom’s argument. The fact that I post on Facebook says absolutely zilch about my ability to do, well, basically anything else, at all!
There are autistics who are nonverbal who post on Facebook.
There are autistics who have cognitive disabilities who post on Facebook.
There are autistics who use wheelchairs who post on Facebook.
There are autistics who have purple hair, who hate cats, who have seven of them, and who want to grow up to be astronauts… all of whom post on Facebook!
And here I am, composing a blog post (which, by the way, any and all of the above-described autistics can do and have done, as well). I’m in grad school. I can drive. You can make an argument. I get it. You can list all my strengths and then say, “You’re nothing like my kid.”
I give you yet another nugget… a conversation with my mom from today (and yesterday, and the day before that, and the day before the day before that…):
Me: Hi, Mom.
Mom: Good morning!
Me: Hows-a bees-a baby tees?
Mom: They’re good!
Me: Where did Goose sleep?
Mom: I don’t know where she slept, because I was already asleep. I’m guessing she slept in her spot under my bed.
Me: Where did Tia sleep? At your feet?
Mom: Yes, she did.
Me: Did they wake you up for breakfast?
This goes on, during which process I inquire about the past day’s sleeping and eating habits and positions of each of my cats. Every question must be answered. There is much interspersing said questions with “she’s the Luciest Goose and the Goosiest Luce!” “Tia Marie Rose, my fluffy one!” “a white kitty and a black kitty!” “I have TWOOOO!” “Do you know how much I love kitties?!”
Every day. Sometimes totaling a good ninety minutes. Yes, my mom engages this almost without question. She gets it. Some people feel loved by diamonds and roses. Others feel loved by great acts of service.
I feel loved when someone kitty scripts with me. There are not many people who love me and get me such that this is even possible. It is pure joy and comfort and all-things-warm-and-fuzzy.
So, as a close to my final argument in the case against said mom’s claim, I say this: I have strengths, and my strengths allow me to do great things. But, if you use those strengths to try to tell me that clearly, I am nothing like your child… I will say this:
Your child has strengths. His strengths allow him to do great things. It is your job, as his parent (as well as his teachers’, counselors’, therapists’, and so forth) to build on those strengths so that he can shine all his au-someneness just all the heck over the place.
Because he really can do great things.