Waking Up From an Autism Nightmare (#214)
27 January 2006
At 2am, we heard howling and knocking from Charlie's room and ran in to find him twisted up in his blankets and (I think) a nightmare. He ran into the middle of our bed and kept hopping up to lift the window blind while saying "schoolbus" and fixing his big brown eyes on us. At 5.30am we gave up trying to sleep and I went downstairs to make coffee, admonishing Charlie "try to go back to sleep, sweetie, the bus will come at 8 o'clock." Jim was out the door by 6.15am to teach his morning classes in the Bronx.
Charlie went back to sleep shortly after that, so I calculated that--along with the 4 hours he had gotten in from 10pm to 2am, he would have a grand total of just over 5 hours of sleep. (Jim and I averaged out an hour or two between us.) Another day in the autism trenches?
The bus door slid open, Charlie ran down the porch steps and in with a big smile. The aide smiled as she readjusted her sari so she could buckle Charlie's seat belt. "Charlie is feeling better," said the bus driver. And she smiled, a little.
So I don't have to say what I was doing as the bus turned around and drove Charlie away to a good day at school, a good game of catch with Dad (just arrived back after a speedy drive down the Parkway), a good ABA session, an overly long wait for Jim to return from visiting his parents in the hospital, a hamburger with fries and a pickle at a favorite hot-dog stand, a shower and conking out at 8.40pm on our bed.
Charlie has slept through the night since he was two months old; some of the medication that he takes also seems to play a part in his deep night-time sleep. So the 2am wake-ups are highly unusual. Charlie does not have the verbal language to tell us what caused the screaming and the knocking on the wall, but I have been saying that he was having a nightmare.
A nightmare, because Charlie has definitely still been asleep when we have run into his room to find him howling and hold onto him. I think I hear words but, in my own grogginess, can't quite read them. We surmise: Is Charlie dreaming about some past bad moment? Some bad behavior moment?
I don't like to write about head-banging and it does not make for pleasant reading. It was a behavior that we would see on and off in Charlie and that got steadily worse in the past year. It is the kind of thing that make autism seem a "nightmare without end." There are treatments that can make it worse, and there are teaching methodologies that can help a child learn to cope and control. And if I did not write about it, and why it happened in the first place and how it got worse over the last year, this would not be the "Autism Reality Show."
Because what we say about autism, about our kids, can profoundly shape our how we view them and how we view autism. According to the Sapir-Whorf hypothesis, language influences how we view the world--how we experience reality. Language "...is itself the shaper of ideas.....the world is presented in a kaleidoscopic flux of impressions which has to be organized by our minds--and this means largely by the linguistic system in our minds," as Benjamin Lee Whorf wrote in his 1940 essay "Science and Linguistics."
There is a lot that is terrible about autism--that makes some think it synonymous with "nightmare"--and there is so much good that has happened to us and to Charlie--so great a community that we have become a part of--that I think the reality of autism is that, lots of moments are like a really bad dream and lots are like a dream so beautiful and so much about something else that you wish you did not have to wake up.
That's what it's like when Charlie kept flashing his superb smile and saying "casstch" to Jim in the front yard. That's what it's like when Charlie and I were waiting at a picnic table for Jim to bring the food for dinner and the sweet grinning delight in Charlie's face made me give him a two-arm hug.
And that's why, though I have no hard proof, I think that Charlie has been having nightmares of something in his past. Calling that screaming and knocking "nightmare" translates those behaviors into the kind of language most of us are used to understanding, rather than the Charlie-speak of "brown noodles." If the Sapir-Whorf hypothesis is correct, what is the reality of a person with limited verbal or expressive language? Does Charlie think in as much language as you or I or in something else--colors, sounds, melodies, musical tone poems?
I know that Charlie's reality is far greater and far more complex than the sum of his simple utterances and short sentences, his wordless cries. If I ever give up on translating Charlie, then autism would be that "nightmare without end" in which Charlie has no means to communicate the reality in his head; in which he and I and we never wake up to hear each other speaking, even words as simple as "schoolbus."
Autism is not a nightmare but there are autism nightmares that autistic kids have. How fortunate that the language of comforting a scared child--"come sleep in Mommy and Daddy's bed"; "let me me give you a hug"--is pretty universal.
"Autism is not a nightmare but there are autism nightmares that autistic kids have."
Yes! Well said, Kristina.
Posted by: Lisa | 28 January 2006 at 05:56
Not much different than when my typical boy wakes crying out in the night, yes with words like, "I want Mommy", but still not much different. The difference is in that we need to guess that our ASD kids are having a nightmare, where Brian can clearly tell me. I was awake about the same time as you and Charlie were the same night. I believe what woke Andrew was stomach pain. It was difficult to comfort him and he/I never went back to sleep. I made my coffee too and he went to school as usual. He had a good day, but when the bus pulled up in the afternoon, he was sound asleep and missed his OT session. Just another day in Autismland.
Posted by: Eileen | 28 January 2006 at 07:52
You are such a good Mommy Kristina:)I am learning so much from reading about you and Charlie that it helps me with K.C. so much!
I hope Charlie sleeps well and those Autism Nightmares stay away so he can sleep peacefully:)
Posted by: KC'sMommy | 28 January 2006 at 08:46
Have you written anywhere about the meds Charlie is on?
Kristina, as I read your experiences, I try to anticipate what can lie ahead.
Sleep tight tonight!
Posted by: Estee | 28 January 2006 at 13:47
Living in Autismland is not unlike Dorothy's trip to Oz, except it lasts longer. Some of it is beautiful, and some of it is not so nice. Keep translating for Charlie, and keep the nightmares away.
Posted by: Wade Rankin | 28 January 2006 at 15:31
My neurotypical daughter was 8 months old, and we were travelling; somehow we all ended up in one hotel room. In the night, La Princessa didn't wake, but was moaning and thrashing. Her 10-year-old brother woke and asked what was wrong. I said "I think she's having a nightmare." He said, "How can she? She's never seen a scary movie yet!".
Another story with a caveat to start: I am in no way comparing Charlie (or any other child) to a dog:
I've had two dogs who were regular dreamers, judging by their twitching paws and sub-vocalized barks (or in the case of my coonhound, baying)--dogs lack language, but not understanding.
On the Sapir-Whorf hypothesis...it seems to be more a metaphor than anything else. It hasn't been proven to be true at all. (good introductory article here: http://www.formalontology.it/linguistic-relativity.htm) So don't torment yourself on that count...
The question to me becomes (referring here specifically to Charlie) does his expressive language mirror exactly his receptive language? In other words, can he conceptualize more than he can say? And then, how can we scaffold his understanding into communication?
On language use with kids...I've just finished reading Ross Greene's The Explosive Child, and I highly recommend it to every parent. I wish he'd written it 20 years ago--it would have improved my parenting immensely. All three of the children I've raised are neurotypical, but I got into needless brangles with each of them because I didn't understand what they were saying. He has a great deal of advice how to help kids with communication difficulties and how to help those children grow their skills.
Posted by: Liz | 29 January 2006 at 15:04