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.

60 comments:

kristen spina said...

Oh sweetie... no words. Just love.

Niksmom said...

This is such a must-read for educators and parents alike. I learned so much and have started to re-examine the perseverative things my own son says with his speech-generating device to see if there is something more to what he is saying.

mommy~dearest said...

Love, love, love this post.

Lisa said...

I am here courtesy of Defying Gravity. This post should be required reading for anyone who works with children with ASD. Very, very well done. Thank you....I think I may write something similar to my son's teacher.

Joeymom said...

That is SO Joey. I'm sending this to his teachers.

Geoz said...

Is there a good script to help a Mom-Nos who needs some support? I'm thinking of Bud, but also of you.

Dixie Sargent Redmond said...

I thank you so much for writing this post. I just shared via FB and will Tweet as well. A very good post for new people working with my son to read. :-)

goodfountain said...

You just made a light bulb go off for me on some things. Thank you for sharing this with all of us.

DOT said...

Like some of the other comments...this SO describes my son. Felt like you were writing about him. An excellent, well-written, thought provoking post! Thank you!

jess said...

Thank goodness he has you for a mother. Interpreting what our kids say is a full-time job. I'm sharing this with my kid's teachers.

kirsten said...

oh... i can only imagine the heartache/frustration that occurred before this letter was (so well) written.

big hugs to you and bud, and go you for explaining everything so clearly.

Alysia said...

This is so so spot on. I have never ever read such a perfect translation of what scripting is for our kids, and how, when not understood, it can get them into trouble. This, to me, is your toaster/hair dryer post for educators. It's that perfect. I think some parents don't even understand what their kids are doing and this...this spells it out perfectly.

Ashmire said...

I'm turning 37 soon and I still find myself blurting out totally meaningless complaints about the weather when I'm feeling particularly stressed, though I no longer remember where I picked up that script.

Robin said...

This is the best explanation of scripting that I have heard. Will use it as a teaching tool for graduate students in speech-language pathology as well as families.

Jennifer said...

Oh, yes. This is a familiar and chronic problem for Jacq. Particularly if we are unsure of which day each theme falls on due to lack of the teacher communicating it with the parents. I'm talking "breath through it, you can do this" catastrophe. I effin hate spirit weeks and other changes to the routine. I would also like to personally destroy the human being who invented automatically flushing toilets.

iamrushmore said...

you blow me away. the depth of your understanding, your wisdom, and your ability to articulate it, and your ability to write a letter like that without any criticism or blame, when I can only imagine the conversations that led up to you needing to write this letter. love love love you.

TC said...

My goodness! I just wrote a post last night about how my N always talks about being sad that his Grandpa died (he barely knew him and he died five years ago) and how I don't know what that's about, but he says it every time he can't express sad emotions. And then here you are, explaining it to me. You're so freaking smart. Thank you!

*m* said...

Brilliant. You are a wonder. I hope this got the response it deserved and that future 'Spirit Days' go more smoothly for your guy.

Mom said...

I have to agree with "m". This is absolutely brilliant.

Jess' Mom

Sheila said...

Beautifully done! Don't you wish you had this in handbook form-bullet points only, ready to go?

Unknown said...

I can only imagine your panic and distress at hearing about Bud's day. The fact that you could keep your wits about you long enough to write such an amazingly insightful response is amazing. Bud is lucky to have you, the school is lucky to have you and we fellow moms are lucky to have you share your wisdom and strength. Hope today is a better one.

P.S. Spirit days were always a problem for my guy, but I think Halloween was even worse. We finally write into his IEP to look for red flags near Halloween and expect a decline from then through winter break. Thankfully we have gotten past that as kids are older and those celebrations take a back seat to academics and school stuff.

Anonymous said...

What he is doing is very common. I know many kids who use their familiar scripts when they are feeling a particular emotion or are dysregulated. I am not surprised a public school is clueless to this. This is why I outplaced my child to a school that specializes in high functioning autism and Asperger's. You would not have to compose an e-mail like this or explain his actions to individuals who are experts. The educators in public school districts are NOT autism experts despite what they may try to claim and despite the consults they may hire that are not there full time dedicating the time and effort required for the needs of the kids.

K connerton said...

Rockstar Mama- Your kiddo is lucky that his number one fan is such a brilliant advocate for him. Likewise- Buds educators are fortunate that you care enough to express your sons person, strategies and experience with them. Your energy and light are a gift to your boy. Well done ;)

jess said...

As I wrote on my blog this morning when linking to this incredible post,

"If you have a child who uses scripts in any way shape or form, you NEED to read this. If you have a kid who gets dysregulated by change, you NEED to read this. If you teach or come into contact in any way with children like mine, I IMPLORE you to read this."

Thank you. Thank you. Thank you.

Katy said...

This kind of insight is an important part of the reason that I, as a potential future teacher, follow blogs like yours. Thank you for sharing!

Anonymous said...

Hi, this is great, but would like to know how the team responds to this? Our school doesn't appreciate getting this much input, no matter how much it could help. Thanks, DOAM reader Sarai

AndyMummy said...

How about "We're not in Kansas anymore Toto..." for times when we find ourselves trying to explain a new and unusual place to those around us... Thanks for this Mom-NOS. This is a very thought-provoking post.

Suzanne B. said...

Thanks, MOM-NOS, for so eloquently explaining this misunderstanding that occurs for so many of our children. I will be sharing this with teachers at my son's new school. What you describe is one of the reasons that transitioning to a neighborhood "big boy and big girl" school has been so challenging for us this year...the frame of reference used by the teachers and administrators is so different from my son's frame of reference that it is scary. My son doesn't understand the concept of bullying, so please don't check off the "bullying" box on his behavior chart when he longs to touch his friend's beautiful, long wavy hair! Fortunately, the teacher realized what he wanted and was able to ask the girl if it was okay for him to touch her hair. She said it was okay, he touched her hair with her permission and with the teacher standing there, and he hasn't bothered the girl or her hair since. Truly, he just wanted to know what her beautiful hair felt like, but he needed to be reminded that we all need to respect each other's personal space. Our IEP is next week, and you can be sure I'll be sharing this with all involved. Thank you, thank you!!

Janet said...

Well put and so very familiar.

KeatonsMommyIA said...

THANK YOU !!!!!!!!!!!! I have SO SO much to learn and figure out still my son was just diagnosed PDD-NOS in August and there isn't really any one who has told me a whole lot about it except that it's kinda like autisim but not ??? and your article was just AWESOME I never really thought about a the very little things to listen for and pay attention to. I just know my son doesn't talk very much and when he does I usually have no clue what he is trying to get me to understand, we do alot of pointing and process of elimination at my house. I am so grateful for this Thank you again so much
KeatonsMommyIA

Anonymous said...

Thanks for your story..It wasn't spirit week for me. but your story answered a few questions as to why my grandson comes off with *I am gonna kill you* When he is mad.. he is 8...Again Belinda

Jaxmom said...

We've noticed that our 11 year old NOS son does the same thing when he's feeling stressed. His go-to phrases are, "What about the dogs?" or "Cookie's a dog!" Very interesting and perceptive post. I'm forwarding this to my hubby!

Debbie K.

Hiking Mama said...

Thank you, thank you, thank you for this post. I just came here through Jess's blog. I am new to the world of Autism (we adopted a 4 year old boy with Autism last year) and this post hit the nail on the head for me as we are going through similar issues.

Jive Momma said...

If feels like such work to explain, but who else has all the pieces of the puzzle? Kudos to you for taking them through the step, in detail and patiently, so they can give an assessment of what happened based on what they need to know to understand Bud. You're a great mom & great advocate. I hope everyone on your team will take every word to heart.

Anonymous said...

Wonderful, wonderful...wish I would have seen this a year or so ago when my son was having trouble with these situations. You are an amazing parent.

Nakisha R. said...

Oh my goodness! After reading this, I had tears in my eyes! God bless Bud & his mom! Sincerely,

A mother of an autistic child

Nakisha R. said...

Thank you "anonymous" for expressing what I suspected to,be true: the public schools don't have a clue on how to deal with my autistic child. Your entire post was helpful.

Kris said...

Thank you for sharing this with us today.

graceunderautism said...

when I stepped away from my own blog, I stopped reading other blogs as well. I am so glad my friend posted the link to this on facebook. It was as if all the words that have been in my head for years came right out in coherent thoughts. J has often said awful things at school and I have to remind his team that if it doesn't sound like him (because he mimics tone of voice and accents too) then it is a script. I will be sharing this.

Aunt Mary said...

That should be on a coffee mug to share with all educators, aunts/uncles, family friends, sitter, etc... How how perfect! We really could have used that at a couple of family get togethers.

Robin said...

you know that you are fabulous right?
Bud is the luckiest kid around to have you for a mom.

KAL said...

Brilliant post. Both my boys script (although it's wildly different from one another) and you've really given me some new thoughts about what John's been saying lately! Thanks for always expressing the challenges our kids face with such clarity and insight. xo (I still want to move near you!)

Missy said...

I absolutely love this post. In fact, I may forward it to my son's counselor.
You see, he does have a script, one which involves the words "I'm gonna kill you" or "I'm gonna shoot you"

I do believe that he truly doesn't mean that; in fact, doesn't realize the finality of his words.
But what he is doing is trying to portray the feeling that he really doesn't like what the other person is doing, cannot describe it to them in words, and the words he is using comes from a movie in which someone "kills" or "shoots" (I think its from cars 2) and then they are gone and the "shooter" no longer has to deal with them. It is his way of telling them to go away and leave me alone.
As you can imagine, the school takes the words very seriously. I have yet been able to find a way to describe and make them understand.
I think this article will hugely help.

Thank you so much for this.

Molly said...

This is absolutely brilliant and applies to SO many ASD kiddos.

Anonymous said...

I can so relate to this post. I'm reminded of the time when my son was 8 years old and was literally propositioning the little girls on the playground. The school was in an uproar. They kept sending him to the principal's office. And there, they kept reinforcing the words he was using by telling him how inappropriate his words were. I knew it wasn't about "sex", but it took almost 2 weeks of talking with him to get "the real story."

His meaning: "Mom, I asked them to marry me, but they said no. And I don't want to be alone when you and Dad die." Such deep thoughts for such a young child. Tried to reassure him that we weren't going anywhere. That didn't work. Finally, we made a list of all of the people he could live with IF something happened to Mom and Dad. Problem solved!! He got to help with the list and he never propositioned the girls again.

And it's like you wrote. Very rarely does it have anything to do with the "literal" words they are using, but if you spend the time to drill down and continue the dialog, eventually, you will find their concerns, worries and finally-feelings!!!

I can really learn a great deal when my son allows me to walk a few blocks in his shoes and shares his world with me.

Brenda said...

Love how intuitive and knowledgeable about your son you are. And how patient and gentle with the school staff. You handled this with such grace.

Alisa Cooney said...

Can I please add a link to this on my website......http://www.mumonamission.org/Link-s-Mum--Dad--family-BLOGS-.html Having other family blogs is really good. www.mumonamission.org

Dana Meijler said...

Hi there,

I love your blog! Even though you are dealing with some very difficult issues and ups and downs, I love how positive you are. You draw to you what you put out into the world, so you are positive, despite your situation and then you have a positive, caring team and great friends. I love that!

I've been looking for some new blogs to follow which find positives in the face of adversity and I am happy to say I have found one in yours. I've put you on my blog roll on my own blog. http://danalesramblings.blogspot.com

Thank you, thank you, thank you! And a big hug for you and Bud.

Suzanne said...

This was wonderful for me to read. My daughter uses echolalia almost exclusively for her communication (she is 7) and is just now starting to substitute words. I recognized the "read the bathroom" quote right away as originally being "sleep in the bathroom". My older son, originally diagnosed with Aspergers, also hated special days at school. His teachers still quote their favorite line of his when the class was asked to write about Peace Day "It's Peace Day, and I'm not feeling very peaceful!" Thanks for your wonderful writing.

Anonymous said...

I shared this with my son's educational team. Thanks so much for sharing with us.
J

Debbie Alliman said...

Love it! My son used to script, but now at the age of 13, he has stopped doing so. Nobody but me understood what message he was attempting to convey, and he would become frustrated.

Debbie Alliman said...
This comment has been removed by the author.
Rachael said...

WOW! First I want to say you are an awesome mom!

I am in awe of your insight into your son, his behaviors, responses and ability to interpret his speech!

My son was diagnosed a few months ago, and there is still so much that I don't understand about some of his behaviors and things he says. Thank you for posting this it has really helped me to think about things my son does and says from a different perspective! We will be following you on facebook!

Jen C said...

You put everything I want to say and tell into something that makes sense to others. Thank you from one mom to another:) I'm so grateful!

Anonymous said...

This is an insightful post. I suspect we all communicate in some form of scripting from time to time but those of us who are neurotypical are better able to get away with it.
What bothers me about school violence and the fear it creates is that few people are willing to recognize that the problem isn't bullying or untreated mental illness as much as it is the easy availability of guns. America in general has a love affair with guns and the power they represent. From former presidents right on down to the gang bangers in the hood we just plain adore guns and we refuse to take any meaningful steps to end gun violence. No wonder the rest of the so-called "civilized" world thinks Americans are nuts.

Wahzat Gayle said...

Sigh
your son is soo lucky to have you as his interpreter and mother!

I was just reading your explanation of autism to his class and it is genius I am sharing it (though it is 2 yrs old still relevant) with my parent group.
sending you((hugs))

Anonymous said...

Best blog i've found to date. My son is 7 w/high functioning autism. This post was written as an advocate for us! Have you ever looked into Executive Functioning Skills w/Speech Therapy? I read 1 of your language and communication posts and this is also my son...he comes across as ADHD but it's Exec. Func. and we didn't know it. His OT realized it. Early intervention has been the missing puzzle and MIRACLE in our lives. God bless you and your family!

Mama D said...

This is amazing. I SO wish I had seen it back when scripted echolalis was a huge part of my son's daily communication. I knew he was using it as a self-soothing mechanism but coud never articulate that to others as well as you've done here. Kudos and blessings to you for this.

momtuition said...

Very informative. Great Post!

aspiegurl said...

I'm one of the spectrum (diagnosed with Asperger's at 4) NASCAR fans and yes I'm a girl. Girls can be fans too. I was upset when my favorite driver was involved in a race incident and used terminology (contact, pit stop) to explain the situation. Not sure if that's akin to scripting or not. I echoed as a toddler, though.