Wednesday, February 22, 2012

Spirited away

Hello team,
I just wanted to touch base after Bud’s difficult day today to share my perspective on what we may be seeing.  I apologize for the length of this e-mail, but I think it’s critically important that we’re on the same page as we head into the rest of “spirit week.”
I picked Bud up after school today because, after hearing reports, I was nervous about leaving him with a sitter.  He has been calm this afternoon, but he is also exhausted.
I have a hunch there were two important factors at play today – 1) emotional dysregulation in the midst of the unpredictability/high energy of a “theme” week at school and 2) scripted echolalia that often takes over in the face of emotional dysregulation.
1) Emotional Dysregulation. 
Bud is often (I might even say always) overwhelmed by “theme” days at school.  “Fun Day” is never very much fun for him.  As a child who needs predictability and structure to succeed, he is thrown by the break from routine and the excess energy that accompanies special days.  Even when he is looking forward to a special day, the reality of it is often overwhelming for him. 
I wrote a piece about Bud’s emotional dysregulation back in 2005, which you can find here.  Though the piece is more than six years old, it describes a dynamic that still exists.  When Bud is faced with a theme day, the unpredictability triggers a warning of danger for him.  While other children see teachers dressed in pajamas and classmates wearing trash bags as a fun diversion, Bud sees it as a threat – i.e., if the rules about what people wear to school are no longer at play, then what other things that he has come to rely on might also be negotiable?   
In the face of this, Bud spends all of his emotional reserves managing a fight-or-flight reaction.  What appears to be a complete disconnect on his part is actually hyper-vigilance.  He is so anxious about other potential unexpected occurrences that he turns inward to create an inner environment that is predictable, knowable, and unchanging. 
For Bud, this inner environment almost always takes the form of a television show or website that he knows and loves.  He invests his energy in that scripted environment, which gives him a sense of control and helps him manage the actual environment, which, as I’ve said, he perceives as a threat.
As you might imagine, when this happens, he has no emotional reserves left – no energy at all, really – to expend on any of the other things that we ask him to do every day at school.  In the language of SCERTS, this makes Bud “dysregulated” – or, unavailable for learning and engaging.  When he is in that space, he is totally unable to engage in anything until he can first reestablish a sense of emotional regulation and safety – which, again, for him, means predictability and structure.
This leads to…
2) Echolalia
As you know, spontaneous, constructed language is a challenge for Bud in the best of circumstances – when he is fully regulated, it is still hard work.  When he is in the throes of emotional dysregulation, it’s almost impossible.  In those situations, Bud almost always defaults to echolalia – memorized scripting.
A few things are important to note about Bud’s echolalia:
  • He is EXTREMELY skilled at using scripts.  Unless you know it’s a script, you often won’t know it’s a script.
  • When he is scripting, the actual meaning of the words is usually irrelevant.  He is usually using his scripts to convey a feeling.  The words themselves are empty place-holders.
  • Bud’s echolalia is mitigated.  In other words, he swaps out words from the actual scripts and replaces them with words that reflect his current circumstance.  HOWEVER, it’s important to remember that it is still a script, and as such, it is meant to convey an emotion.  Though, to the rest of us, the words may imply meaning, they are still just empty place-holders for him.
An example, which I hope will help this make sense:
A current script that Bud uses is “I’m gonna go read in the bathroom.”  This is a phrase that Bert uses with Ernie when Ernie is distracting him and he has simply had enough.
Bud frequently says “I’m gonna go read in the bathroom” when what he means is “I’m tired of you trying to impose your agenda on me.  I want to do what I want to do, without you interfering with my plan.”  It’s important to note that when he says “I’m gonna go read in the bathroom,” he is not interested in reading or in going to the bathroom.
As you might imagine, though, someone who does not know this script might spend a lot of energy trying to engage Bud in choosing a book and discussing appropriate locations for reading, or they might decide that he is saying that he needs to use the bathroom, setting of an entirely different kind of negotiation.
To further confuse things, it is equally likely that Bud would mitigate this script, so that instead of saying “I’m gonna go read in the bathroom,” he might say, “I’m gonna go read in the cafeteria,” or “I’m gonna go eat in the bathroom,” or “I’m gonna go sleep in the kitchen.”  The rest of us can only recognize these as variations of the original script if we know the script well enough to recognize the tone and prosody and cadence of the script.  Nonetheless, ALL of these statements inevitably mean the same thing:  “I’m tired of you trying to impose your agenda on me.  I want to do what I want to do, without you interfering with my plan.”
This brings me to today, which was the second consecutive theme day.  It only occurs to me now that theme days in elementary schools happened only on Fridays, so by definition they were always a week apart, which gave him recoupment time after each one.  This structure is likely a lot more challenging for him.
Bud was VERY excited about pajama day.  In fact, he spent the whole weekend talking about it and planning for it.  He invested a great deal of emotional energy planning for it, and his plans created the structure and predictability he needed to successfully manage the day.  He did not have the same plan in place for recycle day, and I believe his emotional well had run dry by the time he realized that he was facing another out-of-the-ordinary (and so, fight-or-flight) day today.
As a result, he focused inward, imposed an internal script to restore predictability to his world, and reverted to scripting as his primary means of communication.  Some of the reports about things he said today were very troubling to me and didn’t sound like him at all, so I tried to talk to him about it tonight.  Here’s what I gleaned:
1.  I asked Bud if he talked about chasing someone with an axe.  He answered (happily – one of the beautiful things about him is that he is rarely cagey about such things), that he had.  I asked what that was from and he said it was from the woodsman from Little Red Riding Hood – “he grabbed his axe and started chasing the wolf.”  My hunch is that whatever emotion that portion of Little Red Riding Hood speaks to for Bud was the emotion he was trying to convey with those words.
2.  I asked him if he knew about shooting.  He said, “Yes.  Shooting stars.”  I asked if he knew any other kind of shooting.  He thought for a minute and said “Shooting arrows. It’s a sport.”  I pushed further – what else can you use to shoot?  What other kind of shooting is there?  He said, “Shoot something from the Oregon Trail” (a computer game they played at school last year).  I asked what shooting they did and he said “hunt buffalo and kill rattlesnakes.”  I asked what else people use a gun for and he said “Use guns to shoot rocks into the earth like a meteorite.”  I continued to ask about shooting from a number of different perspectives to see if he had any sense that people sometimes use guns to shoot other people, but I got no information that led me to believe that’s in his frame of reference at all.
For that reason, I simply find it hard to believe that he said he was going to shoot someone in the cafeteria.  I do believe that whatever he did say was interpreted that way – but I also think that if he said something about shooting, the words were meaningless place-holders meant to convey an emotional state.  They were not spontaneously constructed language that could be interpreted literally.  The words themselves were as empty as “I’m gonna go read in the bathroom.”
That being said, though, I am not aware of any script Bud has that involves the word “shoot.”  However, twice this afternoon, Bud said “I’m going to shoo them away.”  He was talking about the neighbor’s dogs, but because he used the same cadence and inflection both times, it was clearly a script – and I have to wonder if it’s the same script he was using in the cafeteria today, which may have been mis-heard and misinterpreted, since, sadly, we adults have a very different frame of reference for the tragedies that can occur in school cafeterias these days.
I imagine that we may see some of the same behaviors from Bud as we head into the rest of spirit week, and I think it’s a good idea to have a game plan.  My suggestions:
  • I’ve written a brief social story (attached).  I’ll review it with him, and suggest that it might be a good idea to start his day at school with it and revisit it throughout the day as his dysregulation emerges.
  • Predictability and structure can make all the difference in the world.  I know he has a schedule for the day, but I suggest breaking it down into much smaller pieces.  Break “reading” into a series of steps that let him know exactly what he can expect during reading time.  It often helps to give him a checklist that he can physically check off as he completes each step – holding it in his hands and checking it off himself gives him a sense of control.
  • If he is scripting – or if he’s saying things that don’t seem to make sense – ask “What is that from?”  If he doesn’t answer, just pick a show – “Bud, is that from Sesame Street?”  He won’t be able to resist the urge to correct you (“No, it’s from Dragon Tales.”)  Once he has identified it as a script, it gives you a point of connection from which to build.  Ask him who said it, what made them say it, and how they were feeling when they said it.  It will help you help him talk about how he’s feeling in the moment.  It will also help pull him out of his inner scripted world and into your world.
  • If he says anything disconcerting or unusual, please, please, please, stop what you’re doing and write it down verbatim for me.  It is not at all helpful for me to know “he said something about hurting people” and very, very helpful for me to know “he said ‘poison them, drown them, bash them on the head’” (Cruella de Vil – which means he was feeling an excess of emotion and he didn’t know what to do with it, but he knew he had to get it out.)
Thanks for your time, and thanks for your help with this.  I feel certain that if we’re all on the same page, we can help Bud successfully navigate the rest of the week.  Please don’t hesitate to call me.  I’d also be happy to meet at any time, if it seems like more brainstorming would be useful.
All the best,
MOM-NOS

Social story:
It is spirit week at school.
During spirit week, students and teachers dress differently.  Sometimes they wear funny things.
I can dress up for spirit week if I want to.  I can wear my regular clothes instead if I want to.
Even though people are dressed funny, school is the same during spirit week.
Students pay attention to teachers and do their work during spirit week.
I will pay attention and do my work, too.
If I am having a hard time, I will use Bud words to talk to Mrs. Edwards about it.
I will have fun and work hard during spirit week.


2/23/12 - Edited to add:
Several people have written to ask how Bud's team responded to this e-mail.  I'm happy to report that their response was fast and enthusiastic - which is not surprising, since, as I've mentioned before, we work with an extraordinary team.  Each team member responded to me  individually.  They wrote to thank me, to ask if they could share the e-mail with others who work with Bud, to offer new thoughts and suggestions, and to problem-solve.  And through these responses, I got the most important message of all - the one that told me that every one of them is committed to helping my child succeed.

There are good people out there.  Truly.  Find them, and collaborate, collaborate, collaborate.

My thanks to Autism Speaks and Jess from Diary of a Mom for linking to this post and directing so much traffic here today.  If this is your first time here, welcome - and please feel free to click here to follow Bud and me on Facebook.