This the problem with so much ‘research’ today.
I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.” She goes on to say, “Nobody else can know better what the needs of the affected person are.” “Oh,” I say, “how about speaking with Autistic people?” Surely they know better than any what it’s like to have once been a child. The researcher tells me this is not their focus. I try to understand what I’m missing, what is the focus then? I ask more questions. I listen. As I listen I am aware of my heart. It feels louder, is that possible I find myself wondering. Can one’s heart actually beat harder? I decide this cannot be true. I’m upset. I know I become more aware of my heart when I’m upset. I try to listen to her words, but I’m not able…
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