Friday, August 30, 2013

The Peanut Gallery

Before K was officially diagnosed with autism, I had people pulling me aside at every turn, sharing their opinion on "what was wrong". I was never at a loss for a book or article about autism. I had mothers pull me aside at playgroups, pointing out the things they saw, as though I didn't notice myself. The big A was on everyone's tongue.

These days I'm still pulled aside, but now it's people telling me there's no way K is autistic. Maybe she used to be? But not now. She just doesn't fit that classic picture. I should get her retested. 

She can seem so...normal. 

Except for the times she doesn't. 

Except the fact that two major hospitals have diagnosed her on the spectrum. 

Except for the fact that she couldn't handle the mainstream classroom, or even the self-contained one. 

Except for the fact that she perseverates over things to the point where her anxiety turns aggressive. 

Except for the fact that friends are few and far between, she's never had success at any extracurricular activity or sport, and these days she prefers to stay alone in her room, rather than interacting with me, let alone the outside world.

Except for the 1000 other things that point so clearly to a diagnosis on the spectrum. 

But, on her very best days, she can...pass? I guess to those who don't know her well. I always see it, though. Those close to her always see it. Those looking only for a classic, profound picture of autism? They do not.

Saying my child just can't be autistic isn't helpful. It doesn't make me feel better. It makes me feel like a failure as a mom. 

That's what people must think, right? Those who question the diagnosis. 

The thing is, I know a lot of kids like K. They fall at a similar place on the spectrum. Our brand of autism does exist. It's real. It's challenging. It affects my girl every second of every day. It always has. 

Why people care so much? Why they want to disprove the diagnosis so much? I don't know. I'm tired of people questioning me. I'm ready to start handing out the names and phone numbers of our doctors, telling people to direct all comments to them. 

Autism is a spectrum.

Autism in girls can add an extra layer of tricky. 

But it's autism. Trust the person who has been there from birth. Who's seen it all. Who knows. 

Funny enough, no one questions B's diagnosis. But, he's a boy, so I suppose it's more believable? His behaviors aren't "dramatic", they're "autistic". 

But this is our life. Two kids, two autisms, and one mama bear sick of the peanut gallery. I've accepted my children for all they are.

Wonderful children who happen to be autistic. 

3 comments:

  1. Oh boy have I been there! It doesnt help at all.

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  2. I identify with this sooooo much. I have had so many well meaning people question Maya's autism diagnosis because in their 12 minutes of interaction with her they see that she is just like a normal kid. You said it, trust the one whose been there since birth!

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  3. I sooo understand you I have 1 daughter diagnosed autistic and another daughter whom I always thought maybe get a diagnosis but didn't because people said don't label her she doesn't fit it yeah sure she's not like her sister who's severe and obvious to everyone she's smart now she's having major anxiety and obsessive issues to the point that I took her to the hospital worried about her depression anxiety and obsessiveness and she has an appointment with a psychiatrist Tuesday of course my sister in law says don't label her it'll make things worse she may not be autistic but shes definately obsessive using 1 roll of toilet paper a day and a bottle of soap a day using paper towels and kleenex almost a roll and box a day her hands are raw and red from over washing them. Don't label her? What am I supposed to do and to make things more interesting the ones who don't want to label her are complaining about her use of the washroom and paper products I really don't know what to do here but my gut says she needs a label so we can deal with the right diagnosis am I wrong?

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