Thursday, September 23, 2010

Part 2: Stimming and Self Soothing Behaviors In Our Family

Hello Aspierations Blog Buddies!


I had intended to write last night but as it often happens, other life stuff got in the way.  Our youngest son Ryan has had a heck of a time falling asleep recently and so I have taken to serenading him to sleep with my own special version of lullaby time.  After I was done, I was ready to sleep myself!  


Tonight I'm going to do a follow-up to my blog post on Monday, September 20th, Stimming and Self Soothing Behaviors in Our Family - Part 1.  Thank you to those who commented and emailed and also those who didn't but stayed with my writing from beginning to end.  I always appreciate your support!


Stimming is certainly a topic which warrants interesting discussion.  If you did not read Part 1, I invite you to do so as what I am about to write will make it easier to put my perspective into context.


Tonight my focus revolves around the question I posed in my last blog:


In reference to stimming, is it possible that what some see as a stigma or odd behavior can actually be therapeutic?  

YES, YES, YES, YES!




Before I go ahead, let me say that the stuff I write below and in my blog in general is my opinion unless I have specifically referenced research and provided you with that information.

I am not a doctor.  I don't have a degree in autism research.  As a Mom of two kiddos on the spectrum and a fellow autism spectrum traveler who Googles her way through many days reading and researching about autism and Asperger's, maybe there should be some sort of honorary degree.  In all reality, I'm not looking for accolades, just strategies, tools, answers and support.  Well, maybe a trophy would be nice!

Here is my opinion from what I have gathered from my own life experience and from reading a wide variety of articles and opinions at various websites.



Going back to the basic definition of stimming, we recall that stimming is a repetitive body movement that self-stimulates one or more of the senses in a regulated manner.  


If I were to put that into layman's terms, I'd say that it is an action or actions (physical or verbal) done repetitively by a person that help stimulate or regulate the senses and may also help serve as a soothing, coping and/or focusing mechanism.  In other words, it calms and makes you feel good!


So I got to thinking after I was finished with my last blog that whether or not someone is diagnosed as having autism or Asperger's, we all have some sort of behaviors we do to help us cope with stress or anxiety or to give us a soothing calm, an adrenaline rush or an endorphin high.  


Some of these are considered bad or nervous habits.  Some probably aren't really given much consideration at all but when I give the list below, let me know if you or anyone you know identifies with any of these.  I'm keeping it G rated but I can think of others and sure you can too!


These deal with the senses and providing sensory input.  There are tons more!  What can you think of?


Tactile: twirling hair, drumming fingers on a table, playing with facial hair, scratching, clapping


Proprioceptive: cracking knuckles, teeth grinding, snuggling in quilts or blankets, jiggling or crossing legs, pacing


Auditory: humming or whistling, tapping a pencil or pen on a surface, snapping fingers


Taste: sucking on mints or hard candy, smoking, chewing on gum, pencils, pens, hair or jewelry


Smell: sniffing certain scents, wearing a certain perfume or cologne


Vestibular: Rocking in chairs, dancing, sliding, skating


Visual: blinking, gazing at fingers, staring at lights, lining up objects


I bet you're in there somewhere, right?  Here is what I think is the difference in societal norm.


The word "stimming" unfortunately has a stigma attached to it.  If you hear "stimming" you're likely to think it has a negative connotation or is associated with people who have a disability or who are participating in what would be considered an inappropriate social behavior.


But that being said, by recognized definition, stimming is a repetitive body movement that self-stimulates one or more of the senses in a regulated manner.  


So, by definition, don't we ALL technically participate in stimming in some form or another?  I say YES.  We're human beings.  We all have the need to regulate ourselves and we seek activities that bring us pleasure. 


In fact I would go so far as to say that many of the extra-curricular or leisure activities that people participate in are highly based in self-stimulation, self-regulating behaviors.  A few I can think of off the top of my head are video games, dancing and listening to or playing music.  Drumming would be a great one.  For the thrill seekers, there is bungee jumping and sky-diving and most X-games activities!  Some people jog or run to regulate.  There are whole industries built around these behaviors that are considered socially appropriate.  For that matter, there are industries built around the socially inappropriate as well but I won't go into that here!


What are your hobbies or special interests?  Why do you like them?  What do they bring to you? I bowled regularly from the time I was 4 until I was in my 30s.   I used to love playing tennis, softball and racquetball and when I was in my late teens through early 20s, I was a club dancing machine!  I still enjoy video games, singing and brain teasers.  Do or did these hobbies and sports help regulate me in some way?  Yes they did! 


So even though all of us, autistic, differently abled or not, have what are considered socially appropriate activities we do to try and provide ourselves with sensory input, some of us need more input than others in order to be able to focus and function in our daily lives.  Our level of what we need is much higher.


Some of us are often out of sync with our bodies and have more of an urge or need to stim than others.  We need to distract our brains from sensory overload and we do so by doing some sort of alternate behavior.  Some of these are easier for us to control than others.  Some we do and may not even be aware of unless someone brings it to our attention.


I think part of the reason why "stimming" has the negative connotation is that people associate it with behaviors which come across as more noticeably distractive, such as flapping hands, making loud noises out of place, rocking, slapping or banging one's head or touching body parts inappropriately.  With many people on the autism spectrum that stim, they may not always be self-aware or socially understand why their particular self-regulatory behavior might not be considered socially appropriate.


I think also that with many who have autism or other disabilities such as deafness or blindness, certain stimming happens as a reaction to a legitimate physical problem that the person does not have the capability to communicate in words.  It might be an ear infection or a tummy ache, bowel problems or a headache.  It could be depression, anxiety or fear. 


If our sons are stimming more than normal, we try and see what the catalyst might be to see if we need to seek additional medical attention or assist them with an emotional issue.  For example with Justin, he may be trying to focus on school and needs to block out other sensory input.  With Ryan, who toe walks when he is barefoot or spins, it may be he needs vestibular input like swinging or needs to wear a weighted vest.


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June who commented on my last blog, astutely asked how do you tell the difference between a stimming motion or just a release of nervous tension or hyperness, so to speak?


There will often be overlap.  I would say though that most people would say that a socially inappropriate stimming motion is less easily controlled, happens in greater frequency and the person doing it may not be aware of it taking place.


I think in many cases it would be hard to tell the difference because motions that are a release of nervous tension are often motions which help calm, regulate or soothe us.  Technically, those motions are self-stimulating behaviors and therefore stims.  (At least that is how I look at it.)


BUT, I would say that most people looking at it from the perspective of the autism community would say that some stimming motions are not so easily controlled.  Stimming actions among autistic people have a wide variance in their severity and what might be considered socially appropriate.  


I guess I would pose the question back, is the person aware of his / her behavior and if so, can he / she control it?  If the person isn't aware, if it is brought to his / her attention, can it be redirected or controlled or does it continue to occur in a way which makes it seem as if the person stimming is oblivious to the action?


I think as children grow into adults that their behaviors done to release nervous tension (maybe shaking a leg, tapping a pencil on a desk, popping gum or stretching or letting out a primal scream) are things that they are more aware of.  When one is a child or teenager, they are less likely developmentally to be aware of why they are doing what they are doing.  They do it because it helps regulate them or because it feels good.  For example, a baby may suck his thumb or a child may cuddle with a blanket or special stuffed animal.


John and I had a discussion with Justin the other night about his stimming.  It was such an incredibly mature conversation.  He indicated that he was aware that he stimmed but often he did not realize he was stimming until he was redirected by a parent, teacher or aide.  Some of Justin's main stims that have shown up in a school environment include humming,  making noises and flicking hands and fingers.  Justin realizes that he does these things to help him focus or concentrate or just because it feels good.


I think a lot of us do what makes us feel good.  We crave the endorphin rush.  I know I do and when I don't get it I am way out of sync.  Serotonin and endorphins are natural neurotransmitters that can improve mood, dampen pain and regulate sleep.  Whether it be through exercise, eating certain foods or participating in certain activities which provide us with a natural release of this stuff, I believe we all seek it out in one form or another.  Hopefully we do it in legal and ethical ways.  We like to repeat what feels good.  


My opinion is that many stimming behaviors release serotonin and endorphins as well.  


Again, these are just my thoughts and opinions!  I'd love to hear yours!  Any mistakes are all mine and anything you disagree with is all yours!   :-)


By the way, if you're seeing weird line breaks or my blog looks different than normal, I apologize. It's just another round of Karen versus Blogger and next time I'm bringing in the big guns.  (Clint, Arnold, Jackie, Charles and sweet innocent me!)


I'll be talking about different stuff in my next blog but feel free to comment on this blog below!  I love your comments!


Y'all come back now, ya hear?


Letting My Light Shine,
Karen




12 comments:

  1. Karen, here I am for part two. thank you for such a nice and supportive response to my comment on your Stimming Part 1 blog. It sucks that you have family and ex-friends that ignore or disown you too. What is wrong with these people? My husband and I have almost divorced over it because his family is so unaccepting and ashamed. He has sisters who are popular social butterfly cheerleader, sorority types and apparently have never grown out of the cattiness and self-absorption that can bring. I was a cheerleader, sorority type and DID grow out of the judgmental aspects of it once my son was diagnosed. But alas when I married I perhaps was still superficial so did I make my own bed? Who knows. They don't want their tween daughters near our son as if they might somehow catch Aspergers. He is caught in the middle of them and us but I just won't stand for family putting down my children. I don't know you but in reading your blogs, you're obviously a sweet, smart, caring, funny person and for God's sakes, you're actually doing something in an open forum to help promote awareness and acceptance. What bravery letting yourself be open to all the crap that can come with that. So anyhow, I liked your second blog post and you're so right, we are all stimmers in some way. I chew my fingernails. I also drink tons of coffee. I bet a lot of drug addicts are just seeking their stimulation fixes. So why are our autistic children stigmatized as the bad boys and girls. Sometimes I think society just needs to get over themselves and although guys can often be missing sensitivity chips ala Brad Pitt reference, it is women and their super mom, pta volunteer goddess personas that haven't left the popularity contests behind that often snub the most.

    Our children may get bullied by the boys but it is moms that are most likely to be bullied, excluded and snubbed by other moms. At the very least, how many moms of children without disabilities go out of their way to befriend or include a mom who has a special needs child? Or are they worried that said child will embarrass them or make their own daughter or son look less popular. My daughter is "normal" but is still ostracized by other "normal" families because her brother has special needs. The good thing is my daughter is sensitive to that and doesn't need friends like that anyway but it is the parents of "normal" children that aren't teaching acceptance in their own families which make the problem worse.

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  2. Hi Amanda!
    Thanks for coming back to read Part Two and thanks again so much for commenting.

    It must be difficult for your husband to be caught in the middle between your family unit and the family he grew up with. Still, I think that you, your son and your daughter should be his first family priority and that if the in-laws are mean about your son's Asperger's, he should stand up for you. I prefer the approach of trying to educate people who are ignorant or do not have much knowledge about autism. There is SO much information out there, it can be very overwhelming. I don't know your personal situation and what you guys have tried but if you want to email me at lettingmylightshine@gmail.com, I'd be happy to send you a list of ideas of positive ways to approach family and friends with information about having a child or teen on the autism spectrum. Of course you may already know this stuff, so please don't take offense if I've overstepped my boundaries. :-)

    I gave a lot of careful thought to what you said about moms with special needs kiddos being excluded and snubbed by other moms who have typically developing children. I have seen it in my own life not just myself but in listening to other moms talk at autism support groups about how lonely they feel. Some of the nicest, most decent, least catty, incredibly strong women and men are ones who have a child with special needs or teach children with special needs. Unfortunately these parents are often so caught up in the balancing act of trying to handle daily life with a special needs child(ren) and the rest of their family that it's hard to get together with these people socially. That's why for me, any support group meeting I can attend even if it's just once a month for a couple hours helps provide me a little social sanity. I have a different layer of complexity included because I am also on the spectrum. Disclosing that tidbit of information at the right time is always a challenge. People just assume I'm the Mom of a special needs kid, not on the spectrum myself. The couple times I've been brave enough to share, I've noticed an almost instant disconnect or awkward change. Now I only disclose about myself on my blog, with medical professionals or on a need to know basis. (Few people need to know.) I'm not ashamed but I want to give my kids the best chance possible and I know that even parents of special needs kids can be uncomfortable around special needs adults. I think sometimes they forget that children with autism or Aspergers grow into adults with autism or Aspergers. They would do better to try and learn and observe than shun and exclude.

    I agree with you wholeheartedly that parents of typically developing children should teach acceptance and inclusion. Unfortunately, some of those parents have never grown out of the schoolyard cliques themselves and were never the type growing up to play, hang out or date someone that wouldn't seem cool to their friends. It's when they don't grow out of it after high school and afterwards and pass that attitude to their own children that it is sad indeed.

    If we can teach all children to be accepting and inclusive of others this world would be a better place.

    I should have just made this response my blog today! Good Grief! Thanks again for your support and comments! :-)

    Karen

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  3. Every day you impress me more with your intelligence, wit and humble humanity. At the risk of sounding creepy, your blog is becoming my self-stimulation. An assertive, kind, SMOKIN' braniac beauty! Keep 'em coming!

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  4. OT - Your blog is becoming my self stimulation?!? Dude... I can't be the only guy who didn't need that visual. So wrong. Do agree with you on the hot and smart part. Smart = sexy. Smart redhead = banging.

    Somehow I doubt this is the kind of feedback Karen is looking for, LMAO. Guys will be guys. Even if you write about something mortifying or gross, we'll still think how cute you are.

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  5. Hi Anonymous #1 & #2,

    Hmmm... I honestly never know what in my writing triggers such compliments from men. I wouldn't have thought a couple blogs about stimming of all topics would have done it! Maybe next time I'll emphasize the self-REGULATION part rather than the self-stimulation, LOL. :-)

    I do appreciate your feedback though and am curious what brought you to my blog originally?

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  6. Love the comments... makes me want to start a blog so I can get such admiration!!! I don't know if my hair color would impress though.

    I've got a weird one for you too... nose picking... I see it in one of my children as a stress relief after social encounters.. in the car while we're leaving... it's really fascinating and kinda gross too.

    Thanks for your blogs... they are brilliant, honest, raw and very stimulating!

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  7. Karen,
    Thanks for answering my question so well, and for all the wealth of information you shared! Wow! Awesome!
    I agree that parents of a child on the spectrum would do well NOT to shun an adult on the spectrum, but rather instead look to that individual as a person who could understand first hand what their child is experiencing. Have you ever thought about writing a book that shares the information you have learned, and most importantly shares all of the ideas and creative ways you and John have come up with to help your boys cope and adapt in various situations. Even add chapter as an adult on the spectrum. You would have some wonderful insights into what a child on the spectrum is experiencing! You are truly inspiring!!

    June

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  8. Wow, more comments! Thanks guys & gals! :-)

    Anonymous 3: When I started this blog, the last thing I thought would happen is posts of admiration. Perhaps I should start an Aspierations Admiration Society! KIDDING! (If you knew me in real life, you'd know that even as an adult, I often get embarrassed by compliments, especially of a certain nature. I'm flattered and truly appreciate them but I often feel clueless as to how to respond other than a socially scripted, "Thanks!" unless it's someone I feel really comfortable with. When I was a kid and teen, I'd blush all the time. I've been told that guys think that is funny or cute but I have no clue about that. Funny. HA HA HA...

    By the way, if you start that blog, include a link here! I'll check it out and promise not to judge by your hair color! :-)

    Regarding the nose picking, you know, that actually isn't as weird or uncommon as you might think. Lots of kiddos pick their nose, their fingers, their skin, their toes when faced with sensory overload or social stress.

    I had a platonic guy friend growing up who I know 100% is an undiagnosed Aspie who did that a lot in elementary school all the way through most of high school. I think he tried to be more subtle as he got older but when in 9th or 10th grade I still saw him sticking it in his mouth, I wasn't so interested in hanging out.

    Eventually (I think) it stopped or at least it was curtailed to private quarters. From what I understand, most kiddos eventually grow out of it or if it's a stim that seems to be getting more and more pronounced, they can be redirected with a social story or substitute behavior that may be less socially ostracizing. The important thing is that they have your acceptance which obviously if you noticed it as a stressor, they obviously do! :-)

    Now in my own family, we have a bit of that with the kiddos. Our oldest is a little more self-conscious now since he's seen his brother do it and did't particularly like that but with Ryan, he's only 4 so he has no problem picking away like it's a future Olympic sport! In fact, just the other day, I was in my bedroom trying to read and he brought in a booger to share with me. "It's tasty, Mommy. Want some?" (For the record, NO, I did not. But good job with the sharing skills, Ry!)

    I do think it happens with NT and spectrum boys and girls and I have driven past enough cars seeing drivers pick that it is a pasttime for all ages. Of course there are different reasons for it.

    The fact that you have noticed it with your child on multiple occasions specifically as stress relief is a very good observation and allows you to help see what might be triggering your child's desire to stim in such a way. That way you're paying respect to your child (however gross and fascinating it might be to watch) rather than making him/her feel bad while he/she is already going through stress, anxiety or sensory overload.

    Now eventually, if your kiddo doesn't grow out of it or you think it might be a source of potential taunting or bullying, trying to give an alternative stim / fidget behavior that provides the same self-calming effect may be an option for you. Hand-drawn or written social stories are often a good place to start. With Justin, we give him fidgets for his hands to keep in his pocket if ever needs them.

    Thanks so much for sharing and for your compliments as well! :-)

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  9. Hey June!
    I'm glad that you thought I answered your question well. I wasn't so confident on my end. I have a tendency to know what I want to convey in my head but making a fluid transition from brain to blog is another thing entirely!

    I would love to write a book related to life on the spectrum. I have thought about it many times and my blogs are little stepping stones on that path. Truth be known, I need a real kick in the butt... and need to let go of some of my unreasonable fear. :-)

    Before I knew I was an Aspie I had been wanting to write a book of some sort for years, although the genre has usually been murder mystery, suspense or children's. I love to write...

    I have started so many times... then I head back off to my family and to Count Your Beans and go back to work thinking I don't have time to do this. I have to take care of my family. I have to provide and pay a mortgage. I tell myself, maybe when things are okay financially, I'll write. Then more time passes and that day never comes. Then I look at all I have written in my blogs over the past 9 months and realize I've probably written a book many times over so if I just take it a bit at a time, it won't seem so daunting.

    One of these days, I will jump off that cliff and just take the dive right into the book writing because I do feel a calling with Aspierations that is really hard to explain. I do believe I am meant to share some of my stories. When I talk about things dark, I do so with the faith that someone else out there may need to read what I write. When I talk about things light, I hope I bring a smile to someone who might be having a hard day. I speak more volumes in my writing than very few in my life have ever seen in person, although I do have a goal of doing public speaking someday as well to parents of children on the spectrum and especially to girls and teens. I don't want gals to go through some of the mistakes I made.

    I could really use a life coach or mentor sometimes to help move the organization in my head into something tangible and not tangential.

    Thanks as always for your support! :-)
    Karen

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  10. What to do about an adolescent who wants to masturbate all the time as a means of self-soothing/stimming? Its normal at this age anyway, but ideas on how to draw the lines (beyond, "That's for private time only")? What if they are stressed by the home environment and this triggers the stimming with masturbation?

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  11. Hi Kyntheligronan,
    I apologize for not getting back with you sooner. I hadn't been to my blog recently and didn't want you to think I was neglecting your question.

    I haven't run into that situation yet personally with our boys, although there definitely seems to be curiosity.

    I was curious so I googled "autism" and "masturbation" and there are quite a few results. It isn't an uncommon issue.
    If you are familiar with social stories, I would recommend trying to customize one for your adolescent that deals with topic or adapt one that may already be out there.

    Here is a link that explains about writing social stories:

    http://www.thegraycenter.org/social-stories/how-to-write-social-stories

    As to your other questions, I found a good article about Puberty and Autism Spectrum Disorders. Hopefully you will find it of use too. Not only does it give a lot of direct help about how to work with your child during puberty but it provides resources to age appropriate videos that might help your child as well.

    http://www.aspect.org.au/publications/ksummer07/ksummer07_1824.pdf

    Thanks for stopping by! Hope you'll visit again!
    Karen

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  12. I was once thrown out of a working group for letting my light shine. That hasn't happened since I've learned to attenuate it. In the work force, hand-flapping while expressing oneself and tangential rants are considered socially inappropriate and sometimes grounds for dismissal. This has not been such an issue ever since I've learned to hide it under a bushel.

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