Thursday, July 15, 2010

Stopped Clocks And Glass Prisons

Kim Stagliano calls autism the "pain of a stopped clock".  It's an apt analogy for some people with autism.  For others, the clock is very slow.  Trying to "reset" the clock to the right time for someone with autism requires 5,000 rotations on the back of the clock for a second to advance.  In essence, you are lucky if you can speed it up some and get it working better, but resetting it is very difficult.  As a parent of a child with autism, I have to agree that the picture she shows is painful.  She is a toddler in a teenager's body.

This picture is how I see Alanna's mind.  The glass is autism.  I can see her, but it is very difficult for her to see me.  Lately it has been very painful to see her withdrawing.  Her eye contact and general attending have decreased.  I used to be able to get her attention more easily, but the last two weeks (since the sleep problems began) have been very bad for this.  Thankfully she is sleeping better, but she still remains spacey and much less engaged than she was.  It is a mystery to me what the change is, but I hope we find out why soon.  Sometimes when she looks at me she stares through me, like the boy in this picture - staring out of her prison at vague shapes and noises she knows to be helpful to her without understanding what she is seeing.  When the glass becomes more transparent, she can see clearly.  When it frosts up, she is lost.

The social deattachment is, in my humble opinion, the worst thing about autism.  I could handle physical impairments more easily because I could explain them and relate to my daughter emotionally about how she feels.  If she were deaf, she would never hear my voice, and I may never here hers, but I would see she recognizes me and loves me by looking at her.  The hours of trying to engage her with nothing to show for it... that's when I lose it.  When she is less engaging, it is the most painful.  Perhaps worse than a stopped clock.


  1. Did you check her for strep throat? My daughter withdraws and the "autism" is more pronounced with illness. Strep is the first thing I rule out.

  2. I understand this sentiment very well. I want to give your family a *hug*

  3. Thanks Penny, she is going to the doctor today so he'll be able to check her out for any illness.

  4. If the doctor does not find anything, you might ask for the doc to check her blood titers for recent exposure to strep. We checked A's and her titers were sky high, even though she'd had multiple negative throat swabs.