Saturday, February 25, 2012

Kim Stagliano And Some Good ASD REALITY

By Kim Stagliano 

"Managing Editor's Note:  As far as we've come with overall autism awareness, the reality for day to day living for our loved ones as they grow older is grim.   Ben (in the story below) has Asperger's syndrome. My children have full autism. The diagnoses differ. On Thursday night I spoke to a group of parents and providers at a therapy center in my town.  I stressed, as I always do when I speak, that the autism spectrum is not a hierarchy of "us" down at the bottom and "them" at the top with Asperger's.  My friends whose sons have AS worry just as much as I do about what the future holds for their kids.  Their troubles are more real world - often more dangerous - because their kids will live very much in the neurotypical world, whereas my own will be somewhat sheltered in the special needs system. I'm as sharp as a razor as I describe autism as a horizontal spectrum - not vertical.  I've had it with the shiny, happy horseshit of acceptance and awareness - that's a no-brainer and an excuse to raise money and do little else.   We need paid training, media messages that teach the differences in our kids, support programs for employment and post-secondary schooling.  If I see one more autistic kid solving number problems on TV or being the quirky genius I'll scream. Are some of our kids able to that? Sure. A handful. The reality of autism from lowest functioning to Asperger's is a hostile world that does not understand them, know how to work with them, or respect them in the least"

Asperger's Syndrome, or high-functioning autism, as many in the ASD community including myself like to call it, is not a different version life or "Natural Variation" (yep, that's the title of a blog by a parent who has Asperger's). 

Autism and Asperger's are serious disorders which require supports, services and accommodations in post-secondary education (college), community employment, and housing (supported living or independent living with supports). I'm sick and tired of the "awareness" campaigns. I'm aware already; I have been AWARE for 24 years. Acceptance? Yes, please accept the fact that I learn differently, think differently, understand differently, and will react differently. I'm not a genius - not by a long-shot (I live in Ohio, and I didn't even pass the Ohio graduation test, the standardized test designed to "prove" knowledge.) 

Am I quirky? You bet! Am I good with numbers? Yes, I am. I was in Honors Algebra I in 7th grade for part of the year (before the class became too fast-paced). Am I "Rain-man?" Nope, not even close. And I don't want to be! I am intelligent, eccentric, friendly, have a pretty good long-term memory, developing a sense of humor (thanks to Kim Stagliano), good at math (except word problems), a computer geek, and have an amazing attention to detail (which is why I have my office job).

Understand Me? First you will need to learn to LISTEN. SHUT-UP and LISTEN (as the girl in Princess Diaries says). LISTEN to what I TELL you. DO NOT give advice, unless I ask. DO NOT help me; let me show you how you can best assist me. Don't finish my words, sentences, work, etc. unless I ASK you to.

Know How To Work With Me? Work WITH me, don't try to lecture shit at me. Talk to me like you would talk to any other person. Remember, I might take things literally, not understand a joke, etc. I'm working on that, and I will never, ever give up!

Respect Me? Don't talk about me in the third person, talk DIRECTLY to ME, talk about the same range of topics that you would talk to any other person. I like to talk about ASD and other disabilities; however, I like to talk about other things as well. If you're feeling uncomfortable about a situation, please let me know. I can't understand mind games, and I DO NOT want to play them!

Also, please DO NOT threaten me if you are angry, especially if it at work. It is considered - whether you have a disability or NOT, inappropriate workplace behavior and can cause a hostile work environment.

1 comment:

  1. Hi, Katie. I'm honored you like my words well enough to pass them along to your readers. KIM