Tuesday, April 7, 2009

We are ON THE SAME SIDE

I attended the AutCom conference last fall. During that conference I gained an entirely new perspective on neurodiversity and on a working definition of "autism". And I realized something: Parents (the Warrior Mothers and Fathers) are using an *entirely* different definition from adult Auties and Aspies. AND, both sides are weak in terms of seeing the perspective of the other "side". Additionally, I realized in a HUGE way how MUCH we are all on the SAME SIDE.

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I was taught way back in college voice and diction classes that we are to pronounce words as the natives do. Envelope. Tomato. Mizzouree, Mizzouruh. I know a lot of folks from the state of Missouri who pronounce it w/ the "uh" sound at the end.

Adult Auties and Aspies are like native Missourians--I have to think they were there first (the "natives") and they can define it best, and maybe, just maybe, we should consider defining it their way.

If we DO define it "their" way, then we as parents and advocates, can separate the ILLNESS, the VACCINE REACTIONS, the ALLERGIES, the FOOD INTOLERANCES, etc etc etc the MEDICAL CRAP and call *THAT* something else and TREAT that stuff medically. When we appropriately label the biomedical crap, then we stop giving mainstream medicine the excuse to NOT treat our children because (to quote Kim Stagliano in a HuffPo piece,) "we're just not that aggressive in autism".

If we DO use "their" definition, then we as parents and advocates, can separate out the READING PROBLEMS, the AUDITORY PROCESSING PROBLEMS, the SPEECH AND LANGUAGE PROBLEMS, the SENSORY AND MOVEMENT DISORDERS etc etc etc and call of *those* something else, then schools can quit lumping our kids into contained classrooms and lumping all the puzzle pieces into a broad category of "autism". I'm tired, worn out, from hearing from parents whose school district won't evaluate and remediate a reading problem or an auditory processing delay or an "other" because in the school's mind the child's reading problem is not a reading problem, it's "because it's part of the autism".

We need to know, define what AUTISM IS NOT -- by doing that, we are better advocates for our kids as we work with the medical community and the educational community.

Adults on the autism spectrum (Auties and Aspies) talk about autism warmly, fondly, refer to it as a "culture", and they reflect on the positive aspects of autism. By their use of the word, their definition, the word is about the positives, and is something to be embraced. Presenters at AutCom 2008 talked about how much they are LIKE NT's, desiring relationships, growth, affection, having emotions, having theory of mind, etc. (Reminded me of Kathie Snow's visual about apples and how we are all more alike than different.)

On the other hand... Parents (the group with which I identify) of the younger "wave" of children with autism which began in the 1990's are defining the word autism in a big part by its negatives, by the gut issues, eloping/escaping, allergies, food intolerances, viral issues, inflammation, seizures, candida etc etc etc etc. When parents see a reduction in DSMIV traits after an intervention like the GFCF diet, they say the child is less "autistic". (I am one of those parents. My child is affected in a big way by her allergies, and working on them reduces, not eliminates, those items on the DSMIV checklists.)

Parents, in a big way, are defining "autism" by the parts that separate our children from us, the pieces that block communication and interaction. So... When parents use the "c" word ("cure"), or the "r" word ("recover"), or the "d" word ("defeat"), deep down inside the issue, we are referring to the medical issues that affect the health of our child, that in turn, affect the functioning of our child. Treating the medial conditions positively impacts the functioning of the child. We all learn better, act/behave better, function better when we feel healthy. So, what those parents refer when using the "c" word etc, is really the medical piece.

But... Auties and Aspies, seem to (by my observation over the last eight years) hear the "d" word as the definition "wipe out all the people with autism from the face of the earth", because they are not defining "autism" by the stuff that tends to be on the negative side, and instead, are defining it as the parts of themselves that they treasure. They aren't hearing us parents as wanting to remove obstacles for our children so they can BE who they ARE and TREASURE themselves.

Jay Kochmeister, Sharisa's dad, told me during the conference that Sharisa puts it this way:

"Preserve the gifts and throw out the garbage."

I wish we (all of us) could come up with some common terminology and lingo that we all use the same way, a framework that would make it easier to sort out the "autism" from the "other" so that we can get the help for our kids that they need. We are ON the SAME side. We need some language, lingo, terminology that reflects that fact.

Respectfully,

Penny

1 comment:

Jennie said...

AMEN. Thats all I can say.

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