diagnosis

Diagnosis Stories: In Their Own Words: Carrie

My earliest memory of spinning was at age 2 or 3 and I would spin for hours. It was my favorite activity for many years. I also toe walked, which worked out well for me when I took ballet classes as a teen. I also flap a lot and organize and eat my candies by color group. My family never expressed concern with any of that behavior, it was just accepted as part of who I am.

Socially, I have almost always felt like I was outside looking in. As a kid, I felt like I was weird, I was TOLD I was weird by some, but I was always friendly, even if I didn’t always say or do the right things. Knowing what to say is challenging, so I often just keep my mouth shut until I understand the dynamics of the group and the topic of conversation. I realized, early on, that if I say something, it needs to be something of value that pertains to the conversation.

In school, I had one friend that I stuck with every day. She was my constant during my school years and she remains a close friend.

I find family events and the like to be a bit exhausting. I really enjoyed going to my grandparents’ house as a child, which was the hub of all family activity, but it did wear me out. I was often outside with my brothers and cousins exploring the woods or visiting the horses. As an adult, I would go to my grandmother’s sewing room to hide while I nursed my babies. Other times, I would go find my grandfather and we’d talk at length about phonographs, the wax records for them, the petals on the horns, the years they were made, how they were made, Thomas Edison, machinery, Shirley Temple, and musicians like Louie Gillespie. He was a very calming person for me to be around, which was needed for me because my home life was very much the opposite. I treasure those moments because my need for order and quiet became a wonderful bonding experience with my grandfather.

When my oldest son was diagnosed in 2007, I started seeing Aspergers Syndrome in myself. I ignored it, mostly, just figuring I was weird or quirky. Over the last couple of years, however, I’ve come to realize that I am, indeed, an aspie, and that’s all there is to it.

I had asked my doctor in late 2010 to evaluate me for Aspergers, but she refused, and her assistant told me there is no test for AS. (I believe she misunderstood my question, as we’d been speaking of blood testing for other issues.) I let it go, at that point, and have come to the opinion that it doesn’t really matter whether I’m self diagnosed or not. It’s pretty obvious to anyone who spends time with me that I have Aspergers Syndrome. I’ve actually had people tell me, years later, “Yeah, I always thought that.”

I want other parents with Asperger’s Syndrome to know they aren’t alone and I want parents with kids with Asperger’s to know that their child CAN grow up and have a family, have a life, be successful, and be ok. I’ve had more than one person write me asking me for advice on how to approach a situation and telling me how grateful they are that I write what I do.

I feel like I’m the voice for the kids who haven’t found theirs yet, for the ones who can’t quite articulate what they’re going through.

Having my own blog http://parentingwithaspergers.blogspot.com/ and its own facebook page https://www.facebook.com/parentingwithaspergers has been instrumental in that.

Being able to connect on Bryan’s page https://www.facebook.com/pages/Asperger-Syndrome-Awareness/137166373065838 has been helping me to connect with more adults like me, and that helps me feel not so alone. I feel accepted now, part of a community that understands me and doesn’t expect me to change.

~ Carrie Anderson Cooling
Admin Asperger Syndrome Awareness
Owner Parenting with Asperger’s Syndrome

2 thoughts on “Diagnosis Stories: In Their Own Words: Carrie

  1. It's always interesting for me to hear from adults with AS, and it makes me wonder how wide "the spectrum" of ASD really is. Your story makes me think of myself and my dad, but my dad more so. The things you are talking about with family events is exactly him. If there is a group of people more than 5 or so, even if it's just immediate family, he takes every opportunity he can to sneak away and be alone with a TV, and not because he wants to watch TV. They say once you have a child with Autism you see it in everything, I wonder if it's not the other way around, if you have a child with autism you probably have some of it yourself, and that's why you see it.

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