Sunday, May 15, 2011

Sounds like a blog post

There is ever so much on my mind. A brain isn't a very big thing, you know, and it's awfully hard for it to carry all of this around. But, some things take precedence, so I will try to corral the "noise" in my head (for clarification, no, I do not think in words at all) and give you something cohesive.

I watched videos of myself at 36 months, at Christmas, last night. (Want to see them? I'm a cute kid. They are here). And I wonder what you see. I see flashes of ASD... to be specific, lots of totally ignoring people, spinning in circles for twenty minutes, no eye contact- though I did look at the camera twice and captured that, near-meltdowns and screaming, typical refusal to eat, and overall just extreme passivity such as my sister continually ripping things from my little paws and me just doing... nothing. So yes, it's there.

But you know... I'm not that kid anymore. I truly believe at this point that my life has been one ongoing regression. In oh, 2004?, I went on a plane to the JFK airport, found my luggage, found a cab, and went to my sister's apartment... ALONE. Now, my mom won't even let me take the bus to visit Sister lest I meltdown or, well, need to talk.

And that brings me to my next thought, which is that I still have no words. I've been told it's food allergies, or yeast, or a neurological problem... I have no idea. Honestly, I think it's just autism being autism.

But it's been extremely interesting to see how people treat a nonverbal person with ASD. Or more accurately, how they don't treat her. They ignore me. They get short with me. In reference to helping the lead pastor's wife with the kids at church last night, my mom told me, "You can't be useful if you don't talk." I feel like she was accusing me of being subhuman, somehow. So, let me say, and let you hear... nonverbal does not mean nonhuman!

And again, in case you missed it.

NONVERBAL DOES NOT MEAN NONHUMAN. I am not less than. I am not broken. I am perfectly, beautifully whole and complete.

Lest you wonder what happened with the kids, it was fine. Totally fine.

So as I was discussing some of this with Leigh via text and mentioned that I've been regressing for, well, forever... she said, but what about in terms of quality of life? Regression or progression?

No question. Progression.

If you want the real, honest-to-goodness truth, I am in no huge hurry for these words to come back. I am comfortable. Happy. As Michelle would say, I am Who I Really Am. As I would say, I am who God created me to be. I don't care how you say it, the idea remains.


  1. Hi Lydia,

    No words definitely does not mean non human or not useful. We have experienced the "no words" often and our girl is still human, useful, helpful, loved, etc.

    In my opinion, it is part of autism.

    I hope that you have a good day.

    Mrs. E

  2. Not to mention that your girl is the best friend a girl could imagine!

  3. I just finished reading The Uncharted Path, which is a memory by the author of the Journeys with Autism blog. She talks a lot about how she can no longer do things she used to be able to do (or to make herself do) and looks at it as burnout - like her system was overloaded for so long that she just can't ask it to do as much as she used to. You might really like her book if you haven't read it already.

  4. It's interesting to think that as we and our quality of life progresses (as you discovered with Leigh) other people's reactions do as well, or they might not. It does depend on how we measure progress.

    Thought I might recommend a resource.

    It is for autistic adults with limited/intermittent communication. Picture my World is a set of sequence cards that enable people to communicate feelings and other things. There are cards, for instance, for "worried" and "calm". So "I went to the supermarket, got an icecream and felt happy" (or whatever feeling). They have pictures of males and females (10 emotion cards, 5 for each), and the people on them look very human and centred, with only their faces and possibly hands changing (not things like clothes).

    They are $69.95 Australian and 10 dollars less for members of the autism association who makes them (commissioned them, rather). So if you might find Picture my World useful, you might contact

    (There was a good article, too, about "Coping with Anxiety". And I hope you might be able to read things on the IPod touch when you get it).

    And, yes, a brain is not a terribly big thing!

    (Do you remember what you thought of the tree when you were little? I saw in the first video that child-Lydia was expressive, and so was Sister. She had already some attitude! I also saw the one with you spinning in circles. And the one with the pretty blue dress and the pink jumpsuit).

  5. Here is the Facebook of the association which offers Picture my World:

    AutismVictoria's Facebook

    And here is its Twitter:

    AutismVictoria's Twitter

  6. you make a good point, Lydia.