Teacher Professor

March 24, 2011

Little Girl Lost

Filed under: Autism — Teacher Professor @ 11:01 am

I keep forgetting that Elizabeth has autism.  I mean, I know that she has autism, but generally, she copes with it well.  I have come to think of her autism as a chronic condition like mild diabetes- you learn to live around it.  We use lots of pictures in our communications; I explain in story format and use lots of scripting to help with social skills; chewing gum helps divert repetitive stimming behaviors and the sensory challenges- well, sleeping wrapped up like a mummy in a closet really isn’t the end of the world.  She does have autism, but it is soooo much less- so very much less of an issue that it was when she was a toddler and in preschool.  We’ve normalized to autism and it has normalized to us.  It took tears and time and therapy- but we’re in a good place. 

Only, like diabetes, every now and then her autism rears its ugly head and becomes a real problem.  Our autism- and everyone’s autism is different- seems to come and go.  Like a storm, it comes, dumps on us all, and then drifts away, leaving wreckage in its path.  Tiredness can trigger it.  Overstimulation can trigger it.  Only, sometimes they don’t- so there’s no real pattern to it at all.

Yesterday- yesterday was a storm of autism.  I’m not sure if there was a trigger.  I’m not sure if it was time for the dam to break or if our coming and going and my unusual spate of traveling set it off.  I’m not sure about much.  But by the time I was alerted to it, it was too late and we were spiraling down that path.

It would almost be easier- maybe- if I knew the path.  We well know the path with Ray.  The responses are well-established with Ray- no matter how erratic the pattern.  But with Elizabeth- we were in uncharted territory.

I first got an inkling when I got a knock on the door- and Faith- a little girl from around the corner was crying and said “I don’t think Elizabeth’s being a very good friend,” and proceeded to tell me what Elizabeth was doing.  Elizabeth had been riding bikes with Emily, Tracy and Faith, when she upset Faith by teasing Faith about a boy that Faith liked.  Faith got upset and yelled at her.  That was enough to put her over the edge.  The upshot was that no matter what her friends were saying to get her to communicate, she was spinning in circles, chanting another friend’s name- part of the name “Gret!  Gret!.. Gret!”  Then, she would dart over to them, pull their hair and then, as they were yelling at her, spin and chant “Gret!  Gret!”

Normally, when she is in Autism-Land, we can snap her out of it- isolating her and enforcing quiet.  Comforting her does not help – she just spins more.  Comfort helps later, when she’s processing.  But quiet and isolation is where she finds her center.  I was rather upset at this emergence of autism that has been so, so, so very dormant for so long, that I grabbed her and placed her in her room- meanwhile thinking of the social fall-out.  Emily and Tracy- who are fairly tolerant, have rarely seen this side of her.  Their eyes were enormous and I went back outside to calm them down and try to explain.

How do you explain autism, when I don’t want to isolate her by giving her a label that really is a very small part of who she is now?  Yes, Elizabeth has autism, but she’s also gifted; she’s also in 4th grade; and she’s lived all over the country- she’s so much more than one single label.  And so, I explain it using a concept of her brain.  I tell them that they know that in her brain when she’s tired or anxious, she can’t find the right words and she just reaches for a word that makes her feel better.  She wasn’t being a bad friend- she just could not find the words today to tell them how she felt.  Soon, she’ll be better.  They just need to give her space.  And they need to know that just as she loves them, they love her and you try to understand each other when you’re friends.  They nodded, looking solemn and sympathetic.

However, back inside, Elizabeth was packing her bags.  She emerged from her room, rolling suitcase in hand, and announced “I’m leaving!”.  Just then, the phone rang.  I informed Elizabeth that no, she wasn’t running away, she needed to go to her room and we would deal with this later, and I took the phone call- a friend of mine who rarely calls, and was calling to tell me of the death of a common friend.  A sad phone call. Elizabeth stalked back to her room.

During the brief “Oh no!  How?” conversation, Elizabeth stalked out of her room, rolling suitcase in hand and headed out the door announcing “I’m leaving!”  I recognized her words and her actions and the way she was holding her head- a combination of the running-away scene in “Ramona and Beezus” and our friend Vicki’s “running away from home” story.  And knowing how the scripts go, I let her go.  I watched her walk out the door with my stomach hurting from the intensity of it all.

Ray was hysterical.  At first, thinking she was dramatizing and playing along, he locked the door behind her- peeking out from the curtains to encourage the laugh.  Then, as she turned the corner, he spun around and said “She’s GONE?!  And you’re going to LET HER?!”

Do you know how hard, hard, hard it is to watch my lovely daughter, in “that” space where only a set of scripts are giving her any guidance, walk away with her suitcase in hand?  It’s a kick in the stomach and I can see the edges of panic.  I know that the script says that Ramona (and Vicki) would go to the edge of the woods and that she would wait and that she would turn around, having realized that maybe, maybe running away wasn’t the best thing to do.  But I didn’t remember the script of what Ramona’s mother said to her. I couldn’t remember what her mother did, other than let her go and then go get her and hug her.  Vicki just came back home- so I wasn’t even sure what script Elizabeth was playing out in her head.  And what if… what if she really did keep going?

And so, I calmed Ray down, told him I was going to get her, and by the way, I also had to let out Tom’s dog, a friend of ours who is in the hospital.  I got in the car, and drove around the corner- to see Elizabeth trudging back with her suitcase, limping along.  “Hey,” I said. “I’m going to go and let Kirby out for his evening break.  Wanna come along?”

Sure!” Elizabeth said sprightly, with no attitude, no remonstrations, no sulks, and no tears.  The script had been broken and we were back.

She was focused and present during the whole time we were at their house- we talked about Tom’s status, and how they were dealing with the recent emergency that we were trying to support them through.  We worried together and came back home to get food we had gotten them.

But as soon as we got home, the script kicked back in, and Elizabeth burrowed into my bed, wrapping the covers all around her.  She wouldn’t let me hold her, just kept spinning in the covers.  I asked her “Why run away?  Why not just hide in your room?  Hide in the back yard?  I won’t bother you- you can have all the time you need to be by yourself?  Or we can talk about it when you’re ready to talk about it.”

I didn’t want you to know where I was,” she said.  “I wanted to be lost.


My heart just broke. I still don’t know what I should have/ could have said to that.  I ended up telling her that when she’s lost, I am terribly, terribly worried, and that she does not want to ever hurt anyone that badly.  That we can talk about anything, that there is always a place for her.  I always love her.  And that she is not safe when no one knows where she is.  I flooded her with words, all while holding her tight.  And Ray was part of the discussion so that he knows that running away is not an option. 

I wanted to be lost“… those words echoed an photograph we have of her when she was a little bitty girl… when autism was crashing into our lives and she was pulling back.  There are images of her two-year old self where she is looking out at a world that looks confusing and scary- and I have always called the picture “Little Girl Lost“.  She started pulling away into her own space, into her own world.  I had just read “The Boy Who Loved Windows” and I spent an awful lot of time on the floor for the next two years- engaging her, engaging her, engaging her.  Bringing out her language- one slow word at a time.  Making her laugh- making our world a happy, fun, safe place for her to live.

Apparently, like the chronic condition that autism is, we’re going to have to convince her again that this world really is a place where she wants to be.

Little Girl Lost- We dressed her up here. She was cooperative- but retreating

A more typical pose- we call this one "Paparazzi". She loved the boa and the drama of the outfit



  1. My youngest sounds a lot like your daughter, and I am just keeping my fingers crossed that like with him, this is an aberrant episode, not soon to be repeated. I’m so sorry you all had to go through that!

    Comment by autismmommytherapist — March 24, 2011 @ 1:02 pm | Reply

  2. Very touching and insightful. …

    Comment by Jim — March 24, 2011 @ 1:41 pm | Reply

  3. Ramona’s mom packed her bag. He filled it with heavy items and sent her off. She told her that they would miss her but they still had Beezus and Ramona’s baby sister. She also packed a walkie talkie in her suitcase.

    Comment by Vicki — March 24, 2011 @ 4:44 pm | Reply

    • Ahh- so we’ll use a cell phone if she does use this script again… 🙂 Not sure I can tell her that it’s ok- we still have Ray!

      Comment by profmother — March 24, 2011 @ 5:11 pm | Reply

  4. Oh, how true your post rings in my world. While on the one hand, I believe that I have “cured” Brandon of autism, on the other hand, I know that I have a child with issues. Not as big as they would have been, but big. A couple of weeks ago my ex-husband called and said that Brandon was on the way to the hospital. He was acting erratic in the first half hour of high school (it was only 8:00 a.m. when I got the call) and they weren’t sure what was going on. When I raced into my school to say that I needed to leave, I wondered what craziness the day would bring. I called the Assistant Principal as I drove to the hospital; he reported that Brandon said he had taken a “mystery” pill and that there may be a suspension for going to school “under the influence.” SUSPENSION! ARE YOU KIDDING? Under the influence of what? Well, it turns out that Brandon had taken his father’s pills instead of his own, even though one pill looked quite different (i.e., the “mystery” pill). After being drilled on his responsibility for taking his own medicine (Celexa and Tenex), he solved his own problem when he couldn’t find his own pills. So there it is. My son continues to struggle with executive function. He just wasn’t thinking. He took pills with his dad’s name on the bottle (an Adderal and an Ambian), ended up with critically low blood sugar and the resulting loopiness. He wasn’t “under the influence,” he was suffering from a stupid solution to a problem. He took care of it himself. A special education “manifestation” meeting led nowhere; the committee decided that since he can read his own name, he could have read that the bottle did not have his name on it. They ruled that the situation was not a direct result of his disability. He was suspended for three days. His disability, by the way, is not (according to the public school system) autism, but is a specific learning disorder in basic reading and reading comprehension. He isn’t eligible for services under autism; he simply has done too well. However, what is autism but a disability of executive function? I had a shocking reminder that no matter how well Brandon seems to be doing, he is still “recovering” from autism, not “cured.” And I’m still living in Holland. 🙂 Which, generally, I rather like.

    Comment by Tina Salameh — March 24, 2011 @ 6:53 pm | Reply

    • Tina I love you! I am so glad that Holland suits you so well!

      Comment by Tara — March 25, 2011 @ 6:40 am | Reply

      • 🙂 Thank you, Tara!

        Comment by Tina Salameh — March 28, 2011 @ 7:11 pm

    • ARGH! I hate that when the “impact” is the disability is lessened, all of a sudden, POOF! There is no disability- when yes… yes there is. It’s just less. I’m so sorry about what happened to Brandon and your family.

      Comment by profmother — March 25, 2011 @ 1:54 pm | Reply

  5. Professor Mother, this post is gripping. I just want to leave some words like: you are strong(er than me), smart(er than me) and a very, very good mother.

    Comment by Barbara — March 26, 2011 @ 3:13 pm | Reply

  6. Dear Claire,

    My friend and colleague, Fran Spielhagen, has forwarded your blog to me, and I am now an ardent reader. I am an assistant professor at Mount Saint Mary College in Newburgh, NY. My concentration and research is Special Education, specifically, ASD. My research is unique, and so are my experiences. I taught 3 LFA middle school students reading comprehension using Directed Reading-Thinking Activity. I had quite a bit of success. Competence in communication and social interaction, along with increased reading comprehension were outcomes of my research. While I was writing my dissertation, I taught a self-contained class of LFA middle school boys, some non-verbal. It was the best 2 years I experienced out of my 15 years of teaching. My experience is unique because I realized the paucity of practical applications for these students, so I created individual curricula for each of my students according to their needs. I so want to reach out to you because, although my own children are grown and on their own, I spent two years with my students with ASD, eight hours a day, five days a week. I learned strategies and techniques first-hand. I followed an eclectic type of program that I created from my TEACCH and ABA experiences. I learned to do what works, and what works is different for each and every individual on the spectrum. I have earned my doctorate and am now teaching pre-service teachers about my experiences. I am in the throes of writing and publishing, and hope to pursue my research at many angles. However, as I said, my situation is unique. I do know that these students can learn, and be successful and productive. Thank you for your honest reporting. We really need to educate society; especially our teachers to the characteristics and differences of our students with ASD. I think we share this vision. Irene

    Comment by Irene Van Riper — March 29, 2011 @ 6:26 pm | Reply

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