Monday, June 8, 2009

"My place" on the spectrum

Just to clarify, not that I thought anyone was confused...

I worry that I'm faking. That autism is just yet another wrong diagnosis, that it's not neurological but psychological, that I'm just lazy. I want to be "normal." I want to be thinking of boyfriends, jobs, homes, and going out. I don't go out. I don't see friends. I have my mom, my aunt, and two or three close friends who I wouldn't trade for anything. But still, I want to be NORMAL. And it seems to me that, if it's not really autism, that normalcy is within my reach and the only reason I don't have it is somehow due to my choice.

The first autism-spectrum diagnosis I got was Asperger's (before that, I'd had the typical depression, anxiety, social anxiety, OCD, etc. ones). On my good days, if you talked to me for an hour, you might think Asperger's made sense (I can have conversations, I might even look in your general direction, I might stall out a little, and I'd really rather talk about my cat than anything else, and the stimming is still there, but controlled). On my very worst days... well, you wouldn't talk to me for an hour, because I wouldn't be responsive, but I act more like someone with moderate autism (more obvious stimming, a lot less focus, much more in my own world than in yours). Even when I'm not talking and not responding, even when you don't think I'm there... I want your company! I'm all the same person, so just treat me like you normally would. I kind of worry that anyone reading my blog will think that I'm one of the "fakers" because I seem normal in writing. I often have long conversations with a friend just by typing when I can't get it together to speak well or understand others speaking to me. My writing is almost always in tact, and, I think, comprehensible. The words are in my head, and when I write, it's like cornering and capturing them. When I try to speak, they float around, and sometimes I can peg down the ones I need. You can read this and see it as one continuous thought, but I might have taken 2 hours to write it out.

So, where am I on the spectrum? Professionals call it high-functioning autism. My parents call it "Lydia land." I don't really know. As long as there are cats, though, I'll happily stay there.


  1. "The words are in my head, and when I write, it's like cornering and capturing them. When I try to speak, they float around"

    so perfectly, fabulously descriptive.

    ah, these damned labels

    at our last neuropsych appt the dr said that kenz tested as pdd-nos rather than autistic disorder. he kept talking, then stopped. 'i'm surprised that you didn't react to that,' he said. 'most parents would.'

    i thought about it for a second and said what i was thinking, 'you can call her whatever you want. i'm still going to call her kendall.'

    the labels can help. a lot. they can act as a guide to tools that can help mitigate thechallenges. but they don't ever define what or who you are. so high functioning or high faluten .. i'd just go with lydia.


  2. Love your insights Lydia. thank you for taking the time and energy to "corner and capture" them. Jess, I love your sentiment too about labeling and naming people first. I'm so glad to have found your blog...and am thinking many things. 1. i love the tiger photo. when my son was 3 we walked by what could be the same tiger at the Brookfield zoo in Chicago. Reid laughed hysterically, nearly wet his pants. I do not know why but his laugh is contagious and your tiger brings back giddy memories. 2. have you heard of Autreat? i so want to experience this retreat in July of folks who are all on the spectrum dialoging and respecting each other. we are in Calif. so it's far--maybe you could make it before we do?

  3. So stay. :) Can't be a bad place if you're there.

  4. for me, the important thing was always understanding my own patterns. asking questions like, "if i'm having trouble in some area, socially speaking...why?"

    with help, i've been able to learn about myself, understand why specifically i struggle socially, ways of developing coping strategies. the important thing has always been critical thinking skills, understanding myself, not labels.

    so, the labels...they exist. like jess said, they can be great tools, but ultimately they're just not the primary thing. you, with your ability to write, describe...your intelligence and distinctive Lydianess...will be able to get a handle on any difficult areas. thrive. make lydia land however you would like it to be, with or without labels.