Thursday, August 29, 2013

ABCs of Autism - H

Tonight I was cracking up, thinking how all I really want to talk about, scream about, is the toileting situation.  He is doing so well with it at school and doing pretty well here at home with peeing but the pooping outside, the poo smearing, the constant fear and worry about when the next time he'll poo is awful.  So I was cracking up, thinking that the ABCs of Autism should all be about poo.  A - that poo thing is a pain in my ASS, B - BOY, do I hate that poo situation, C - The poo is driving me CRAZY, D- DAMN, I am mad about the poo situation, ha ha ha!  Anyway, H.  High Functioning.

Is he high functioning?, everybody asks, when I say Anthony has autism.  Well, not everybody asks it but a lot of people, the majority.  He's not, I guess, I always say because he has such a lack of verbal communication but I just looked up the definition and now I'm mad!  I don't know what Anthony's IQ is! There is no way that that child could take an IQ test, it's insane to think he could. It burns me up that someone makes a decision about his IQ (that it's low) when there is now way he could take an IQ test. That seems like less of a problem that Anthony has than that the stupid TEST has, if not everybody could take it. Anyway. When you have a child with autism, you can expect that question a lot, so I guess we should know what it means.

So here's the characterization, off of Wikipedia, which is not always right but it seems right in this case:

High-functioning autism is characterized by features very similar to those of Asperger syndrome. The defining characteristic most widely recognized by current psychologists and doctors is a significant delay in the development of early speech and language skills before the age of 3 years.[2] The diagnosis criteria of Asperger syndrome exclude a general language delay.[4]

Anthony definitely doesn't have Asperger's syndrome, he has a severe language delay.  He is eight years old and he has barely any words anymore, although he is tricksy, as Maria would say, because sometimes he'll want a cracker and say CRACKER, as clear as a bell.  Sometimes he has to go potty and he'll say POTTY.  Who the hell knows but he definitely has a language delay, he had it before he was three and he certainly has it now.

Sometimes I get down about our situation, about Anthony's situation, because he is not HIGH FUNCTIONING, or whatever.  But then I see a story like this, about this girl, and she is obviously a genius.  I mean, she still has autism, but she is so smart and sensitive, she just can't communicate like everyone else.  And even though she might have to live with her parents and maybe she won't have a regular job or whatever, what a gift she is giving to people, to parents like me, and to everyone who thought they knew what it meant when someone had autism and was non verbal.  When I see something like this video, I think there must be so much inside Anthony, so much, and it's my job and Mike's and his therapists and teachers and all of us, to figure out what it is and how we can get it the hell out of there.

Most days I feel like I am up to that challenge, so I have to just figure a way to push through the days that I don't feel like I can do it.  We have to keep pushing and trying to make him not *high functioning* according to some random definition, but actually high functioning, in the world, so he can function and have his best life.  Here's to Hoping!

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