Saturday, June 15, 2013

Alex has autism. Not diabetes or cancer or AIDS.

I did it again. I went looking at something I should have stayed away from. There was a disagreement over this...

"It is estimated that one in every *88 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined."


which is not just from one person, it's all freakin over the place. I've seen it online, I heard it on TV, people tell me... it's everywhere.

I can see both sides of this. kinda. Well, I can see the intent. On one side, you have this from a self-advocate-

"Seriously, please stop comparing autism to things like cancer, and aids. It does not help the perception of the public in accepting us, and seeing us as capable being who are equal, and it is not a childhood disorder, as so often portrayed. Autistic kids grow up to be autistic adults, and we have to live with the stigma you put out there about us."

and on the other, you have this from the person who thought the self-advocate was talking about her, specifically, instead of the offensiveness of the comparison in general-


"Comparison is used to illustrate the magnitude of a situation does NOT imply equality between the two. Very simply put, 1 grapefruit is bigger than 12 cherries. does that make a grapefruit a cherry? NO but gives most people (especially unfamiliar) a visual of how big a grapefruit is. comparison is valid and a way to raise mainstream awareness by putting autism into perspective as it relates to other that require public awareness and assistance."

I can see- sort of- how you might get an idea of size comparison... but not really. 12 cherries does not tell me how big a grapefruit is when I don't know the size of the cherries.

1/88 kids are diagnosed with autism.

1/10 children are diagnosed ADHD.

1/20 children have Sensory Processing Disorder.

1/20 have epilepsy.

The numbers tell me that in a kindergarten class of 30, 1 kid of 3 classes will be ASD, 3 kids per class will be ADHD, 1.5 will have SPD, and 1.5 will be epileptic. I don't know how many will have diabetes, cancer, or AIDS. Telling me more kids in this class have ASD than all 3 of the last combined tells me nothing of how many have ASD.

The other part of this that bothers me? Remember my favorite game? mhmm... here we go... Three of these things belong together, three of these things are kind of the same...

AIDS
 
CANCER
 
DIABETES
 
AUTISM

Three of these things have a mortality rate directly connected to the diagnosis. Three of these things imply the loss of a child. Three of these things are classified diseases. Apples and oranges- or grapefruit and cherries- may all be fruit but...
Disease is often used in a general sense when referring to conditions affecting a physical system (eg, cardiovascular disease) or a part of the body (eg, diseases of the foot).

disorder is less restrictive: Merriam-Webster’s defines it simply as “an abnormal physical or mental condition,”
You aren't comparing grapefruit and cherries, more like grapefruit and brussel sprouts. What comparison is there?



This comparison, as well as hearing that someone would rather their child have diabetes than autism, takes me back to the unthinking and callous comment, "his mind might not be there but he's still a growing boy." It hurts.

Autism is not a death sentence.

Autism is not a loss of life.

Autism is not emptiness. nothingness.

If you think that, you don't know my son.

Alex is an 11 year old boy with severe autism. He's non-verbal, illiterate, developmentally a toddler, dependent on me to meet all of his needs... and absolutely perfect.

Now, don't get me wrong, he's not perfect as in has no faults at all, he is perfect faults and all. He is fully human. He is a whole person.

He's sweet and loving- the boy knows how to let you know you're loved. He can head butt you one minute and kiss you the next. and, oh, how he loves to dance. He's just as moved to move by current country as he is Nirvana, Pink, and The Ants Go Marching. He loves dogs but couldn't care less about cats. His favorite shows are Dora and Sesame Street and he loves to sneak into his brother's bed to watch out the front window. He's got a laugh like you wouldn't believe and a cry that will motivate you quicker than anything. He loves to watch water swirl around his feet but hates stepping down into water. He loves his brothers... his sister drives him crazy. He's very stingy with his toys. He likes for me to read to him, the most recent book- You Are Brave- he insisted I read it 3 times and then look through it again to see the pictures. He knocks in threes. He speaks in threes. He loves the number three as much as I do. He loves baby dolls- but only the black ones. He loves babies but doesn't want them touching him. He hates the slide but he loves to run. When he looks at me, his eyes tell me all I need to know.

He is not empty.

He is not lost.

He's right there, you just have to look.

No, I would not trade his autism for cancer or diabetes or AIDS.

Alex is Alex and I like him just so. He is happy and healthy and that is all that matters.



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10 comments:

  1. Yes he is...PERFECT! And a great dancer to boot.

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  2. Excellent analogy...its like comparing different types of fruit

    and a good point that the intent of those who compare autism to cancer is not generally a bad one,
    no matter the intent though, its just wrong.

    beautiful kid :-)

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  3. 3 out of 4 of those things kill you. Autism doesn't. What a bunch of morons. /facepalm. Good point girlie.

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  4. Oh My!! He is just adorable and perfect and precious and you just wanna squeeze him with love and kisses!! Great kid and well put my dear!

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