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© 2023 by inTune Pathways 

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Disorder Is A Disarming Word

August 31, 2018

 

 

I have had to let go of people, places & things that interfere with or chip away at the thread that connects me to my children.
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Sadly, this often includes parts of the very system that was set up to help parents of children on the autism spectrum, & the children themselves.
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Disorder is a disarming word. "A state of confusion"; "disruption to the systematic functioning or neat arrangement of".
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Systematic is right on.
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But there ain't nothin' neatly arranged about human beings. Regardless of their neurology.
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Do you know that when children are diagnosed with autism, it isn't so much the actual diagnosis that devastates the parents & disconnects them from their children?
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It's the language of pathology around the diagnosis.
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It's catastrophic. It's deficit based. It's negatively geared.
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Everything about our children is analysed and termed disordered; non functional. Even their play.
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Imagine, as the parent of your beautiful, incredible child.. hearing nothing positive about them, consistently, constantly.
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Imagine seeing many experts ignore them, disregard them whilst pathologising them matter of factly to Mum & Dad in their office. In their presence.
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Our children are all knowing. All seeing. All hearing.
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We are ignoring them.
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Our children are complete & whole beings. .
Now.
.
Today.
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We are spending the childhoods of autistic children panicking & planning & crying & grieving over who they will become. .
Instead of paying attention to who they are.
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Today.
.
Now.
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If we were all, every single parent, raising a child on the autism spectrum, would we be so panicked, distressed, crying, grieving?
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Or, would it be more 'normal' and less isolating?
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There is isolation among the autism community.
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What IS Autism? Who IS Autistic?
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Whose challenges are more serious?
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Whose abilities are more impressive?
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We are all on the same team.
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And, we forget.
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"She obviously doesn't face the same challenges that families with children with REAL autism face.. the kind of autism nobody wants to talk about.."
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Yet, I do.
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All of those challenges.
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All of the google stories, pictures & videos.
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And still..
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My children are complete & whole beings.
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<3

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