Out of sight, out of mind

Trying to fight for understanding of both Joey and Andy everywhere is a daunting task, often an overwhelming effort of fighting prejudice so ingrained, so pervasive, so accepted in our culture and society that we find ourselves at a loss for explaining why it is so inherently wrong. Our culture's experience and even language is geared to fully accepting the discrimination, takes the prejudice as accepted and fact, weaves it into the fabric of even basic communication and understanding.

It has been really rearing its ugly face this month, too. Joey has been suspended, either in or out of school four times in the last month. Four times. He has been so overwhelmed by anxiety that he has lashed out in frustration, melted down, with power, violence, and vehemence, that they have removed him and kept him out of his classroom- and once out of school- FOUR. TIMES. We're averaging once a week. I can't see how, even if this was a situation of simple "bad" behavior, this would be viewed as effective or acceptable; but being that Joey is autistic, and related to that has a severe anxiety disorder, it is simply insane.

Yes, I know he hit adults, shouted obscenities, and did some other things that were unexpected and inappropriate in his frustration and desperation. Yes, he was able to communicate that he wanted to go home, and did most of these things with that goal in mind. If you were trapped in a haunted funhouse of freaks and wanted out, you might try anything you knew would get people to help you leave, too- anything you've seen or experienced as successful in getting you the hell out of there. Having the freaks tell you that you aren't allowed to leave and have to do strange, overwhelming tasks (or monotonous, pointless tasks) you know are impossible for you to do that moment, upon pain of scorn and punishment (or even if they try to bribe you into doing the impossible tasks) would probably make you fight harder, or try something more desperate and energetic. Like hitting them. Like running out of the room, or trying to escape the building.

Now imagine you've been in the funhouse for years, and have to go through this every day, with no end in sight.  

See, Joey is disabled, and that disability includes issues of handling anxiety, processing sensory information, and regulating emotion. It also includes problems with effective communication, though I more and more suspect that is a problem that cuts both ways- he has trouble communicating, and people around him don't put in the effort to understand, which makes it a frustrating spiral of nonsense. He lives his entire life like Alice in the Mirrorworld, only he never wakes up from it. Wonderland and Mirrorworld are the realities he has to learn to deal with. And I'm not talking about the fluffified Disney version, either. I don't think it any wonder that these kids struggle with depression and anxiety. I don't think it any real wonder that Joey has been struggling with depression and anxiety for years now.

Trying to explain this disability, and the need for supports, to other people shouldn't be hard. However, I find it is like trying to have a long talk with the Caterpillar. After a while, you wonder who is the one not making any sense.

We have friends who are in wheelchairs. Yes, they are trying to learn to walk. However, I have never seen anybody punish them for not walking across the room, even just once; or take their chairs away for a day, because hey, they won't die without them, right?

This happens to Joey all the time.

Who would put the Deaf child in the regular ed classroom without an interpreter, because hey, they're smart, and shouldn't they be able to read lips? Why isn't that good enough for them to understand this new science lesson? Or maybe we can throw them in with an interpreter, but we don't offer signing lessons. What, don't Deaf people use sign to communicate? Why doesn't this child understand sign automatically?

This happens to Joey even more of the time.

And really, it boils down to autism being invisible. You can't see it. You can see clearly that our friends cannot walk. You can see their legs and feet aren't developed for it, and you can see they struggle when they try, even with fancy walkers and supports. A Deaf child tossed into a hearing classroom without support is also obvious. It's ridiculous. It is so ridiculous, it's stunning how often it actually and really happens- after all, you can't usually tell someone is Deaf by looking at them.

Autism is invisible. You can't see the processing problems, the neurological differences. The facets you can see are often overlooked- for example, Joey's weight, which is a combination of metabolic difference (due to neurological difference), dyspraxia, and sensory disorders (Joey is sensory-seeking with oral stimulation), is often just overlooked as too much ice cream and credited to laziness, bad parenting, or whatever, because our society is so totally accepting of weight discrimination and fat shaming. (Autistic kids who have the opposite issue, where they may be neophobic or otherwise don't eat or absorb calories, move constantly, have a high metabolism, etc. also are not seen to have any real "issue" either, because our society loves thinness and values it- so those kids get no help or support, either). The uneven ability to access skills is ignored by the adults who should be helping him and teaching him.

It's even in his IEP. Goal: to be able to cope with stress using behaviors appropriate and acceptable in a classroom. It's right there in his contract. He's learning to do this. Expecting him to do it is like tossing Alice in Wonderland at a kindergartener and expecting them to read it, because hey, aren't they learning to read?

Then punish them if they don't read it perfectly, aloud, in front of the whole class. Punish them in a very visible way, one that students find particularly threatening or humiliating. Like, say, sending them to the office and suspending them.

Think of how those other students might feel, seeing what happens.

Why are people shocked by meltdowns? Why aren't school staff extensively trained to deal with them? After all, it's not just autistic kids who have them.

Imagine how you'd feel.