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I talk about Autism, a lot

Why Neurodiversity is a Dirty Word to This Autism Mom

8/6/2013

1 Comment

 
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I know that my feelings about Kate's autism will NEVER be as important as Kate's feelings about herself, but for now, while Kate cannot communicate how she feels, I am trying to tell her story as authentically as I can.  I fully understand that my perspective comes with all sorts of prior knowledge, experience and expectation that skews the reality of what Kate is going through, but for now, it is what we have.  It is our experience to tell and I take issue with those who would determine that I should NOT tell Kate's story because I don't truly understand her condition and that only an adult with autism is capable of understanding her autism and her potential.  Attitudes like this are what give the neurodiversity crowd a bad name.  

I DO believe that we MUST listen to adults on the spectrum in order to truly understand all the facets of autism.  HOWEVER, a parent, whether they are on the spectrum or not, has an unrivalled connection with their child.  They have EVERY RIGHT to discuss their child's autism at length.  They have EVERY RIGHT to discuss their feelings regrading their child's autism at length.  They have EVERY RIGHT to scream and cry.  They have EVERY RIGHT to cheer and celebrate.  

I am getting increasingly frustrated with reading posts about how neurotpical parents have no real insight into autism.  Our children are an extension of ourselves.  We FEEL every second of struggle and pain that our children go through.  We FEEL every triumph, too.   

Isn't it enough that the insurance companies, 'medical professionals' and schools do not allow parent's a voice in their child's treatment?  Do you really want to silence us too?  Neurodiversity is becoming an increasingly problematic philosophy to me and that is not the road I wished to travel when I began this journey.

1 Comment
Vickie
8/6/2013 01:04:03 am

I totally agree ( I wasn't going to read until I got home from work, but I had to) As a Mom of an Autistic Adult, I am tired of being made to feel guilty for wanting more for him. As I've said a million times, if I were going to live forever, I would not want to change a thing about him ( I don't want to change a thing about him now) but I have to consider what will happen to him when I'm gone.

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