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.