It’s not a tumour: a post about autism


Mine, that is.

Yeah. Mine.

Once upon a time, way back in the early days of my parenting journey, I found out that my oldest child was autistic. As is my way, I read everything I could get my hands on, and did a little self-diagnosing here and there. “Oh, precocious reader. Huh. early talker. Difficulty with unstructured social settings. Hmm. Guess he’ll take after his mom!” It was a bit of a running joke among my friends when my autism was showing, and it was something I saw a lot of when I worked in the field.

“Is that kid’s dad on the spectrum?”
“Yep.”
“Does he know?”
“Oh, hell, no!”

Quite simply put, after my son was diagnosed with autism, I started seeing that shit everywhere. But not really. Not in a way that I actually believed was true, for me.

And then my daughter was diagnosed with it. And the odds, ever in my favour, seemed to indicate that maybe it wasn’t such a wacky idea that my wacky little world had more autism in it than could be coincidental. Like rules? I sure do! Have difficulty completing tasks? Oh, hells yes. Get easy emotionally overwhelmed? Don’t talk to me.

So much of my quirky nature, however, could be easily explained away by other things. I knew I was crazy (of the depressed and anxious variety), so I chalked up much of my poor social skills stuff to social anxiety, and inability to talk about my feelings as part of my depression. It wasn’t a perfect fit, but it made enough sense.

Until it didn’t. What if, I started thinking to myself, the depression and anxiety didn’t come first, like I thought? What if the weirdness, the avoiding family events by diving into a book, what if my pathological childhood hatred of having my photo taken — what if those things meant more? What if my lifelong sensory stuff had an origin? What if my struggle and consistent failure to stay organized wasn’t actually because I was lazy or unmotivated? What if my ability to remember the most minute little bits of information while not being able to find my housekeys had an explanation?

I decided I needed to know, one way or the other. I found a psychologist with a specialist practice in Asperger Syndrome in adults, and made an appointment for an assessment. Which was today.

Sure enough.

Oh, I “present well,” and I did “remarkably well” on the executive functioning tests she did, but she also stated that I clearly demonstrated a significant number of markers for Asperger’s.

So there you go. How am I feeling? I’m not sure. This really isn’t a surprise. I mean, I’ve had my suspicions for years, so confirmation of said suspicions should be validating, right? It is, to an extent. I’m relieved that I now have an explanation of why I have found and continue to find so many things so much harder than most of the people around me. I’m not broken or failing. I’m just not wired to excel at some stuff (which could be said about most of us, to an extent).

In some ways, this is going to make my life make a lot more sense. In spite of doing really well academically, I still struggle at times with understanding assignment expectations when they’re vague or I don’t have a model. I get lost in the minutiae, and it sometimes takes me longer to take all the teeny bits of fascinating information and develop a big-picture piece out of it all. I’m now in a position where I can say, “I need more time,” and not feel like I’m failing at the assignment as a result. I can ask for more concrete explanations without feeling stupid for not understanding the assignment as is. I can pinpoint the reason why something isn’t working, and talk about what I need to make it work better for me. Those are all incredibly valuable things. If nothing else, I’ve had a lot of years of autism-based disability advocacy experience that I can now apply to myself.

And here I am, feeling vulnerable, and overwhelmed, and … grief. I’m feeling grief. I spent my entire life believing I was a failure for not understanding subtle social interactions. I have always thought there was something seriously wrong and unlovable about me, because I’ve had so much difficulty maintaining relationships and even close friendships. When I struggled with independence as a young adult, again, those feelings of failure were strong. How different might my life had been if I’d known earlier that autism was probably making all of those things more challenging for me? I don’t know. Maybe it wouldn’t have made any difference at all. But I think I need to mourn the loss of what never was for a bit. The little girl I might have been had I known that my difference had a name needs a fair good bye before I can celebrate the pretty kick-ass Aspie adult I grew into.

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4 Comments

  1. Melissa said,

    April 25, 2012 at 7:20 am

    I have so much love for this post, and for you. You’re awesome, quirks and all. 🙂

  2. Carolyn Weintrager said,

    April 25, 2012 at 12:15 pm

    {{HUGS}} Love you.

  3. pathwayspast said,

    April 25, 2012 at 9:17 pm

    So glad you shared this; I’ve been on a similar journey since DD’s dx 4 years ago. Right now I’m afforded a lot of flexibility because I am a SAHM, but the “what if” possibility of that changing is fah-reaking SCAREY. New social situations and interactions that my paycheck is dependent on is my worst nightmare. That stuff is part of how I know that I’m on the spectrum… And I’m so ok with that at this point, but I think it’s because I am allowed to hide out when I need to.
    *Fist bump*, from one quirky girl to another.

  4. seventhvoice said,

    April 26, 2012 at 6:49 am

    Love this post… .still in the wondering phase myself so thank you so much for sharing your experience = )


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