Monday, October 21, 2013

Functioning Labels

Boys and girls, today we will discuss functioning labels.

I know, I know, you don't want yet another post about how inaccurate these labels are. You don't want to hear one more parent of a verbal kid try to make it seem like their life is similar to those whose kids can't speak. You don't want to listen to one more mother ramble on about how her kid isn't very high functioning, even those said kid is out of diapers/can feed him or herself/is mainstreamed/is reading at a12th grade level.

I totally get it. I really, really do. I have gone back and forth about this debate, because a part of me thinks functioning labels aren't all bad. Children who can't feed themselves, dress themselves, use the bathroom, get their needs across with words, score poorly on tests we've decided measure intelligence, probably aren't functioning at a level society considers high. While children who can dress themselves, and feed themselves, and use the toilet, and communicate verbally, probably aren't functioning at a level society considers low.

Because that's how we define these labels. By how an outsider views our children. We decide functioning labels based on how complete strangers see our kids, and that can be dangerous. A stranger might look at a non-verbal child, and feel lucky their children are "normal". A stranger might hear the sounds our kids make, and decide there isn't much going on upstairs. A stranger might see our children stim, or meltdown, or do anything else autistic, and decide our kids are a waste of resources. Space. Oxygen. Who will never amount to anything. Who will always be a burden on their families. Who will never bring joy to another living person. (Who then feel sympathy for parents who harm their kids, because low-functioning=not worth much. Not human. Now worthy of love.) I have even spoken to parents who have written off their own kids as low-functioning, and seem to think their children are empty vessels, and that is truly heart breaking.

On the other hand, a stranger might look at K, and decide she is high-functioning, because she can speak. And, well, because she can speak. That seems to be the deciding factor, since she still stims, and has meltdowns, and is in a private school for kids on the spectrum. She has no friends to speak of, not ones who seek her out for play dates, or sleepovers, or a trip to the mall. Not without my intervention (aka, begging for someone to please hang out with my child.) She hasn't been successful in soccer, or Brownies, or dance class. She has anxiety that can shut her down completely. Although, she can mostly dress herself, microwave Easy Mac, and does use the potty (though there are very important aspects of this we have yet to master.) There are things she can do on her own, and things she can't, but to that stranger on the street she would be deemed high-functioning. One of the kids who might go to college, get a job, start a family.

And maybe she will do those things, in her own way. Just as all kids on the spectrum do everything in their own time, and in their own way. Maybe she'll live with us forever, because there is honestly a good chance of that happening. My only expectation for either kid is happiness. Just finding some way to feel fulfilled and happy in this world. That's it.

When it comes down to it, there are individuals considered low-functioning, who might end up accomplishing a lot. Unfortunately, based on outward appearances, some would never suspect they were capable of things like a college degree, or even a job. Then there are kids like K, who people might automatically judge as high-functioning. However, they might always been in the most restrictive classroom environment, or not live up to the expectations a stranger would set for them. This is where functioning labels can fail us. They lower or raise expectations based on first glance, which doesn't help any of our kids in the long run (not that I am saying K won't do great things, I am just using this as an example. Whatever she does, it will be great!)

But, I get it. I get feeling the need to label your child. To use those labels when speaking to others. Feeling that people won't understand how difficult life can be without those words. But, are we labeling our children as a service to them, or are we doing it because we want the world to feel sympathy for us, as parents? What are our motives? And how do they affect the outcome for our kids? Are we holding them back, because we are so transfixed on a couple little words? Are we pushing too hard? Would taking labels away benefit our children?

I don't have all the answers. I know there are people who feel strongly both ways, and I'm not here to tell you which is correct. I just want to talk about the effects of labeling, and if it helps or hinders our children. Do we use them, or take them away, and at what cost?

For now, my kids are just autistic (well, I still say B has Aspergers, which is a whole other post, right?) How they function is subjective, and I don't want to put them in any box which might limit what people think they can do, or make them feel bad because they should be doing more. I think children need to be looked at individually when we set expectations, not just as part of a functioning label. But, as always, I don't speak for everyone.

What do you think?

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