Wednesday, May 4, 2011

That's awful! I'm so sorry!

I was reading some autism related blogs today and in one they were discussing the stigma that comes with being diagnosed with an ASD. It's not nearly as bad as the stigma that comes with an emotional disorder, but it's still commented on in a negative fashion on a regular basis. Now don't get me wrong, I'm actually very used to hearing about how bad my genes are, how awful it must be for me, and how sorry people are that I have two autistic children.

Now that being said....

About three days ago a nurse from Boston Children's called to confirm some details about Xander's upcoming surgery. She was going over family medical history and asked if anyone in his immediate family had any neurological disorders. When I asked what would count as a neurological disorder she listed autism as an example. I told her that two of his siblings have been diagnosed with PDD-NOS. The line went silent and then she said... "That's awful! I'm so sorry!". This actually shocked me into silence. Most of the time when I hear this its from a "well meaning" family member, a stranger, one of the kids' teachers... but I've never heard it from a member of the medical community. Most of the time I easily respond with "I'm not sorry, they're perfect.". Not this time. This time I sat there for a few seconds speechless. We continued the call with no other 

Don't get me wrong.... she was awesome. She was so thorough in her explanations that I got off the phone truly comfortable with the entire process. I don't see what she said as something bad, something wrong, or a negative mark on Xander's surgery experience. As a matter of fact I had put it out of my mind and forgotten all about it until I read that blog this morning. 

I think on of the things I'd like to see for the autism community is for reactions like that to stop. Seriously people... you want to know how to help people with an ASD or parents of a child on the spectrum? Stop those reactions. Believe it or not, not a day goes by that I don't wonder if my genes are what caused my children to have these challenges. Parents like me don't need you to point that out. We're reasonably intelligent people, we know. Personally, I feel blessed most days. 

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