Monday, September 20, 2010

Stimming and Self Soothing Behaviors In Our Family - Part 1


 

Hello Aspierations Blog Friends!

Tonight's blog primarily focuses on stimming.  If you're not sure what stimming is or if you're curious how it relates to our family's daily lives, please feel free to read on. 

My sons Ryan and Justin were diagnosed with Autism and Aspergers a little over two years ago.  If you've been to my blog before, chances are you know this already.  If you're new here, I mention it so that you can get to know a little about me and because even though I've done a tremendous amount of reading and research about Autism Spectrum Disorders over the past couple of years, I still consider myself an ongoing learner.  

As a parent, I am naturally concerned with providing the best care to my boys.  There are many different kinds of therapy available to children with autism.  Many of them are quite expensive, many of them require a large time commitment, many of them have questionable results. 

When assessing what kind of therapies to consider for our sons, we look at their individual needs and their individual obstacles and challenges.  We also look at their personality and individuality.  What makes them who they are?  What helps regulate them, calm them and help them become the best they can be?

Is it possible that what some see as a stigma or odd behavior can actually be therapeutic?

In our home, stimming is a common behavior that occurs in one form or another daily with each of our sons.  By basic definition, stimming is a repetitive body movement that self-stimulates one or more of the senses in a regulated manner. Although it is common with those on the autism spectrum, not everyone has stims that are as noticeable as another.  There are also people not on the autism spectrum who stim, although from what I've read, this is much less common. **UPDATE** - The more I read about stimming, the more I believe that almost all people stim to some degree. I think perhaps what the author of the article I read was referring to was stimming that was considered "negative" or not socially inappropriate.  (See my Part 2: Stimming and Self-Soothing Behaviors In Our Family when you're done with Part 1!)


http://aspierations.blogspot.com/2010/09/part-2-stimming-and-self-soothing.html

Stimming actions can be visual, auditory, tactile or vestibular. They can also incorporate taste and smell. Some of the more common stimming behaviors that are seen in those on the autism spectrum include body spinning, rocking, hand flapping, lining up toys or cars and repeating rote phrases. They are often self-soothing.

Here are some of the ones that we have observed our boys do either recently or over the past two years.  I share these with you to let you know that if your children exhibit any of these behaviors, you're not alone and if you'd like to discuss or give feedback on any of these behaviors, I welcome your comments in the Comments Section below or via email at lettingmylightshine@gmail.com.




Ryan (4 years, 4 months) - Autism Spectrum Disorder diagnosis 

Spinning - We first noticed this at about 18 months.  He did it a lot up until the time he was 3.  Multiple times each day he would stand and spin in circles for up to 5 minutes.  He still sometimes spins but not as often and for not as long. We've also noticed when we go to amusement parks, he gravitates toward the spinning rides. (These are the ones that would make me queasy. I love roller coasters but hate the rides that spin in circles.)

Bouncing and Crashing - Ryan is a child who very well may be an X-Games champion someday. He seems to have little fear, a very high tolerance for pain and loves to bounce, climb, crash and be in motion.  

Lining up cars and toys - I'm not sure exactly what age this started but it was well before 2 and it still continues to this day. Rather than engage in imaginative play ** with the cars he prefers lining them up.  The exception is when we have road mats for him to help him take his cars from place to place.  For the past few months, he has started to engage in wheeling the cars more often but given a choice, he still prefers to line up, sort and count his cars.  He has well over 200 and has memorized intricate details of almost all.  Cars are a favorite reward incentive for Ryan.


(**Correction: After reading a comment on my blog from Gavin, spending time on the floor playing with Ryan and rethinking Ryan's developing behaviors with cars, I do agree that it IS imaginative play to line up cars. Thank you so much to Gavin for his insight and for pointing out that this is a visual and mental stim!)




Opening and closing doors - This was a favorite activity from 2 - 3.  

Licking or mouthing objects - I believe this classifies as a stim.  Ryan is very oral.  He chews on ice, he chews on clothing, chewelry (chewable jewelry) and has a tendency to put non-food items in his mouth if not carefully watched.

Justin (10 years, 11 months) - Asperger's diagnosis with noted ADHD symptoms

Flapping Hands or Flicking Fingers - We started noticing this in late 3rd grade when Justin was 8.  It wasn't happening too often at first but it increased over time.  We noticed it a lot during 4th and 5th grade at home.  The teachers gave us feedback that it was happening a bit at school but that for the most part, it wasn't too noticeable.  

It seems to happen more often after Justin has been playing video games or programming video games and we are taking a break to do something different like exercise or go to an event.  We notice it during our family walks outside and this past Sunday, when standing next to Justin at church during worship, it was more prevalent than I had seen in awhile.

Question to parents, educators or anyone with experience with AS or ASD kiddos:  We often notice Justin stims more when he has had a lot of carbs, pasta or crackers.  (This of course is his main staple.)  It also seems to be more prevalent after time spent playing a video game with noise so we try to limit this to a degree but as Justin loves computer programming and video game designing, we don't want to keep him from his special interest.  Have you noticed where certain kinds of foods have a significant impact on reducing or increasing stimming?

Humming, Beeping or Making Vocal Sounds - Beep. Boop. Whoosh. EEEEEP! Computer error noises. Kerplunk.  Crash!  Duh-da-duh-da-duh-DA.  Video game theme music. Sirens.  Repeating the same tune or noise over and over.  Justin has been doing this for a few years now and although we kindly give him redirect reminders while we're trying to work, are on the phone or if it gets really loud or particularly lengthy, we realize this helps regulate him, so on the advice of one of his initial doctors, we let him do his thing and try to give him other less distracting options he can do while in school.  We don't want him to feel ashamed or embarrassed and although we love him unconditionally and accept him for who he is, we are continually strategizing to figure out ways that he can regulate himself in public in a less noisy way.  This is where I worry about bullying happening.  It hasn't happened much yet other than a couple snide remarks but Justin is at an age where he doesn't want to draw negative attention to himself and so it makes for a continual challenge.  Much of the time, we think Justin may be oblivious to his surrounding environment while he tries to self-regulate.

Before Justin was diagnosed with Aspergers, I remember a time in 1st grade when he used to sing the same songs over and over.  I specifically remember "She'll be coming around the mountain, when she comes" and feeling real anger and hostility toward whomever SHE was.  Now realize, Aspierations friends, I am a very patient person.  John, my husband... well, he's working on it and to his credit, he's come a very long way.  Anyway, I digress.

Did you notice anything unusual or familiar in the self-stimulating behaviors above?

One thing you probably did notice was that although both our boys are somewhere on the autism spectrum, neither of them have the same stims.  Justin was not a spinner.  He was not one to line his cars up.  He rarely put anything in his mouth and so when Ryan came around and was regularly mouthing anything and everything, it was quite a wake up call for us!  

Ryan on the other hand does not flap his fingers or arms, doesn't blink a lot when self-regulating and doesn't usually make noises out of the ordinary unless he choose to mimic something he finds particularly hilarious.  Unfortunately for us, this tends to be words like "fart", "pee pee" and "boobies" but I won't go there this blog.  If you need a really good laugh, check out my August 28th blog where Ryan joined us for Justin's Middle School orientation and provided quality entertainment for all those around.


I suppose I would be remiss if I didn't mention the fact that I've noticed some personal stimming behaviors myself. There is one that I do that John and I noticed around the same time.  This was about a couple months after I realized I had grown up with undiagnosed Aspergers.  

We've both noticed that I have a VERY hard time standing still without shifting my weight back and forth from one foot to the other.  I'm pretty sure it is very subtle because no-one in my life had ever mentioned it to me before.  I do truly wonder how long I've been doing this.  The best visual I can think of to describe it is to ask you to pretend you're listening to some music and while you do so, you sway a little back and forth in a rhythmic beat.

Now that I've noticed I do this, I am keenly aware of it and sometimes that awareness drives me bonkers. I initially thought that tons of people must do this naturally.  But in watching people standing in line at check-out counters and in many situations where people have to wait, I was so shocked to find that most people DO NOT!  The best place for me to notice a group of people at one time is when standing up in the balcony at church.  Of course when singing, I've got a natural excuse to move to the groove.  I have to admit, when I try to stand completely still and not move, it's very difficult.  I can of course do it but I prefer not to.

The other habit that I do that I find self-regulates me and I'm not sure if this would technically classify as a stim but I'll throw it out there anyway is to chew gum.  Specifically chewing peppermint gum.  In fact, I think I should buy stock in Wrigley because their peppermint Orbit gum not only gives me a "good clean feeling" and of course, sexy minty breath (BONUS!) but it helps me concentrate, it helps calm me and as I sit here on the computer typing this blog, I currently am chewing, blowing bubbles and occasionally popping my gum when no-one is around to be annoyed. (The popping of the gum is a bad habit, I know.  But if no-one else is around, I won't tell if you won't!)



Hey Wrigley, if you're out there and ever need a friendly spokesperson or a blogging plug for your products, just drop me a line!  When I was a kid I used to love Big Red gum but now it's Orbit all the way!!!  Of course if you have any extra cases of peppermint gum laying around, I'd hate for them to go to waste!  (End of shameless plug trying to get free gum!  Sorry folks!  We're back to our scheduled programming!)

I posed a question earlier.  Is it possible that what some see as a stigma or odd behavior can actually be therapeutic?

What are the plusses and minuses of stimming?  How long does it last?  Should one focus on redirecting a stim or stopping it entirely?  Are there good stims and bad stims?

These are questions I will address in my next blog.  I will tell you in advance, I do not profess to know the answers but I will be happy to share my opinion, my experience and some of the research I've done online.  

I welcome discourse and I encourage you to come back for the follow-up!  In the meantime, if you have any questions or comments about stimming, please feel free to leave them in the comments section below.  I would especially be curious to hear what kind of stims are most common in the experience of Aspierations blog visitors. 

Thanks for stopping by!
Let Your Light Shine!
Karen 

16 comments:

  1. Hi, Karen,
    I appreciated hearing this information about stimming. I do remember seeing the hand flapping behavior and rocking and a few others when I taught music one year at a school with many autistic children about 26 years ago. I do appreciate the reminders about it. I currently have one autistic (mildly) 7th grader and sometimes he taps his pencil on the leg of the music stand and it makes a ringing noise. But then, a few other kids, who are not autistic, do that too, and they don't even realize it after awhile. It's kind of like sitting and using the ball of the foot to shake the leg up and down in a nervous/ hyper sort of way. I do that if I am sitting somewhere and get impatient of sitting. I need a release of tension. I try to relax and the behavior stops. When you described yourself chewing gum, it at first sounded like just a thing to do to help alleviate nervous tension or too much coffee. How do you tell the difference between a stimming motion or just a release of nervous tension or hyperness, so to speak? When I hear my autistic student doing that, I just tell him to please stop. Then he sometimes looks surprised as if to say, "Gee, I didn't know I was doing that." Great and informative blog! Thanks for sharing so honestly!

    June

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  2. Very interesting topic. My son also makes noises. He has Aspergers and has been doing it at least 6 years. He is 15 now. It does get worse if he is under stress or has had too much pizza. We have tried to change to a gluten free, casein free diet but it is so difficult because he is an incredibly picky eater. My son has been bullied for the past couple of years and I think the stims are a factor in it. I love him but I can see how others would find the behavior very loud or annoying. My son looks like your average Joe when not stimming so when the stim comes out, I think it surprises people more than anything and rather than people think he may have some sort of disability or learning challenge, they just get weirded out. Adults too. My in-laws especially. They don't accept it and think we can just have it stop. It sucks. I'll be interested to read your next installment.

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  3. Hi June and Amanda,
    Thanks for checking out my blog posting about stimming. I did a follow-up late last night that I invite you to check out as well.

    June, I tried to answer your question there although I don't know if I did a very good job. I think all children and adults have self-stimulating / stimming behaviors. Some just come across as more socially appropriate than others.

    http://aspierations.blogspot.com/2010/09/part-2-stimming-and-self-soothing.html

    Amanda: I'm sorry to hear that your son has been bullied and that it appears the stims are a factor. I worry about this a lot too, especially as our oldest son gets older and children and teens become less inclusive and more exclusive. We try to give our son a "bag of tricks" or a bunch of behaviors that can help stimulate or regulate him that might not be as socially noticeable but still provide him with the sensory input he needs. That being said, he often isn't aware of his stimming behavior until someone points it out so we have to work sometimes at being preventative or pro-active and that isn't easy. We're all for letting him be who he is but since he is at an age (almost 11) where he's becoming more aware of how others react to him, we want to work with him to give him the best possible chance to feel like he blends in but still retains his individuality.

    It's a shame when adults, especially family cannot try to be more understanding. I get what you're saying. I know people that are more considered with their own embarrassment than trying to understand and accept. I have had friends defriend me on Facebook. There have been certain relatives that have excluded or ignored us. We are not invited to certain activities. I have had letters and calls go unanswered and trust me, these were non-threatening, loving pieces of correspondence where all I was looking for was family history information so that I could best provide for the health needs of my children. I still leave the door wide open ready to accept these people when they are ready in their lives to accept us.

    Regarding your comment about trying to change to a gluten-free, casein-free diet, we have contemplated that too and are working on helping the boys get the vitamins & nutrients they need. If you have any suggestions of what may have worked for you, please let us know!

    Thanks for stopping by!
    Karen

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  4. Hi Karen,

    I've been sick lately so I'm just catching up on this awesome series of posts. Well done!

    I'd like to point out a couple of things regarding the car-lining-up stim because it's something that I used to do - a lot.

    1. It's mainly a visual/mental stim in so far as the pleasure comes from seeing a whole row of neatly lined up cars, in specific orders, sometimes colour-based, sometimes otherwise.

    Where there is more than one row, it often indicates that some cars are given greater significance.

    Many of my cars were given to me by specific people. I would look over the individual cars and remember specific people as I did so - hence it was often a mental stim as well.

    2. This bit is a correction... (perhaps)

    You said;

    "Rather than engage in imaginative play with the cars, he prefers lining them up."

    I can tell you that when I lined my cars up like this as a kid, they were having a meeting. The cars were speaking to each other and the car in front was undisputed leader.

    If that isn't imaginative play, then I don't know what is. Certainly I had the idea before Pixar...

    My parents would have just seen me lining cars up. They were never aware any of the other stuff.

    That doesn't mean that it isn't there.

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  5. Hey Gavin,
    It's great hearing from you again! I hope you're feeling better! Being sick is incredibly draining and I hope you're feeling rested soon!

    Thank you SO MUCH for your insight into the car-lining-up stim, especially your comments about the visual/mental aspects. I thought about your #2 correction and agree with you that it definitely can be imaginative play. I think when Ryan was non-verbal or in his signing stage, it was harder to see this but over time, if it wasn't there as imaginative play already, it certainly developed.

    I was playing with Ryan the other night after I wrote this blog and as we were lining up cars, he became very animated and shouted out directions and rules about the way the cars needed to be lined up and which cars needed to be with which and why.

    Incidentally, I have become to really enjoy sorting and lining up cars too. I've gotten into his world and found it incredibly cool. Who knows, had I been given cars as a kid, I may have done the same thing.

    Thanks so much for your personal insight and reflections upon your past! :-)

    Karen

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  6. I teach an ASD class and often find that the boys need to make noises and stim. One has a need to chew and it is something he always needs. When first in my class it was his shoe laces. Next it was tissues (used and unused). Obviously this distressed many to watch so he then reverted to sucking his thumb. Being 14 and wanting to start looking for jobs I thought this needed to change so I have givne him a lanyard drink bottle holder (from movie world etc. where an adjustable elastic is attached to a lanyard. This he can hide under his shirt and pull out when needed. It may not be everyone's cup of tea but it is by far the lessor of all evils he has tried so far. I am sure he will turn to gum as an adault but at this stage his mum is not happy with gum.
    Most of my students like to tap or flick rulers, click pens or something at some stage. The trick is directing it to something appropriate for a high school classroom to avoid bullying an dcomments in mainstream. We will never stop it but hopefully it can be directed to something satisfying but not distracting.

    Cheers
    Jane

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  7. Hi Jane,
    Thanks so much for stopping by Aspierations! I hope you'll visit again and continue to share your input as it's great to hear the perspective of an ASD teacher who has seen a wide variety of children and teens.

    With our oldest turning 11 soon, I wondered if his stimming noises would get better or worse as he got older. They seemed in the last year to get worse at home but from what we've heard from teachers, better at school as I believe he is starting to become more self-aware.

    I definitely worry about the bullying. It hasn't happened really so far but as he gets older (he's in 6th grade now), I see less inclusiveness and more exclusiveness even though his school keeps him mainstreamed.

    Your last line gave great food for thought. "We will never stop it but hopefully it can be directed to something satisfying but not distracting."

    Thanks so much for sharing, Jane! :-)
    Please visit again!
    Cheers from the USA,
    Karen

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  8. "I can tell you that when I lined my cars up like this as a kid, they were having a meeting. The cars were speaking to each other and the car in front was undisputed leader."

    I used to spin different colored jacks at camp (couldn't be bothered with the bouncing ball nonsense unless i was really trying to fit in). I'd spin them, sometimes alone and other times in groups, organizing and reorganizing.
    While it looked arbitrary to everyone else, in my mind the spinning jacks looked like dancers and I was 'grading' their performances.

    People tend to assume imaginative play requires common context and explanation.

    I'm sure there are people on the spectrum who are engaged in imaginative play but simply can't or don't see a need to explain the Very Obvious Thing they are doing.

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    1. I used to spin them too. I used to call them ballerinas. And I'm a guy. If I see one I still enjoy that. lol

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  9. Hi 13 x 30!
    Glad to have you here! Thanks for your post. I truly appreciate hearing opinions, analysis and anecdotes from other spectrum travelers. There is a lot we can learn from each other.

    Your spinning jacks story was a terrific example of how perception of imaginative play can be vastly different from participant to observant.

    Loved the "Very Obvious Thing" line. :-)

    Ironically as I was reading your post and responding, Ryan lined up his cars into an intricate pattern. He was recreating freeway bumper to bumper traffic. :-)

    Hope you'll visit again!
    Karen

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  10. i think gum will be key to me kid keeping stress at bay. but he can't chew it at school, so he has some item in his pocket as a focus tool. have seen nail chewing, picking, chewing on clothes, twisting and pulling hair (and eating, pika). So far he has been able to move on. That's why gum seems like natural substitution. i don't like sugar substitutes, and so far he will only chew juicy fruit. he's 8.

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  11. oh, and my 8 year old is unable to explain when he's upset. the teachers try to force it out of him. you can imagine how that goes. he has just switched from the crying about it to standing up for himself (he shouted a female classmate to return his scissors, teacher admittedly stood up for girl). not being able to give 3 words explaining causes alot of stress, and i don't trust the school's counselor... the principal has stepped in as a mentor, he's a reasonable and educated professional. i feel lucky, despite some bad situations (my son is a bully target).

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  12. Hi Anonymous,
    I just turned 43 and gum has definitely been instrumental in helping me keep stress at bay!

    Since schools frown on gum, have you tried having your son wear Chewelry / Chewables? They have worked fairly well for our son who is now 4 1/2. Ryan and has challenges with pica and mouthing non-food items and we've found that the chewable jewelry that is made for spectrum children has been a good substitute. They have them as bracelets or necklaces. The necklaces have worked best for us.

    Here are a couple links. (We're not affiliated.)

    http://www.nationalautismresources.com/chewelry.html

    http://www.chewelry.ca/ - Lorna d'Entremont, the owner of this company also does giveaways at Facebook and can answer any questions personally.

    Being 8 and trying to explain why one is upset is tough, especially for a child with autism or Asperger's. I feel for your son. Our 11 year old still struggles and I'll be honest, sometimes it's hard for me to express my feelings in words too. Writing it out seems so much easier.

    It sounds likes your son is mainstreamed. Is there a SCIP or social communication integration program in your school that helps children on the spectrum with social skills? There was one in our oldest son's elementary school and now his middle school. They utilize "the Incredible 5 Point Scale" and if your school doesn't, you might consider checking it out and sharing the information with your principal.

    Here is a link:
    http://www.5pointscale.com/

    Thanks for stopping by Aspierations! Hope you'll come back!

    Karen

    I'm sorry your son is a bully target. I empathize.

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  13. Some of the mimicking actions struck me as something called echolalia or echopraxia. It too may be a form of stimming.

    When I used to line up my cars I did so based on their faces. If you look at the front of cars, there is a full spectrum of expressions, from happy, sad, surprised, mean, angry, and so on. I used to transition them from one expression to another. So I guess there was a method to my "madness". lol

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  14. Adult auties can become bullying targets in the workplace too. I was thrown out of a Program Management Office working group because of "hand-flapping". This is before I was diagnosed. I now am very careful about what I do in the workplace. But someone from work recently bumped into me at the supermarket and of course there I was quickly tapping my leg with my fingers as I was looking for something on the shelves! Oh well.

    The problem at work are all the leaps that people go through. If they see that a person stims they feel that something is wrong with them and if something is wrong with them then therefore they mustn't be suitable for XYZ. So, I'd rather not fuel that debate if I don't have to. I have become much more watchful of myself. I also have a couple of very trusted others who notify me should I venture into one of my "unaccepted characteristics", such as tangential rambling or special interest tirades, etc...

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  15. Thank you for the blog post on stims. You might also wish to check out Bev's blog post on it:

    http://aspergersquare8.blogspot.com/2007/03/rocking-and-flapping-and-stims-oh-my.html

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