Tag Archives: self-stimulation

A Stim or “Self-Care”

I asked Emma if I could write a post about her string and she has agreed.  Yesterday she told Soma about her string.  Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door.  The mermaid had long black hair and she’d watch its hair sway as she ran.  Later, Emma began twirling a strand of her own hair.  She would twirl it around, but then began putting it in her mouth.  The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained.  We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with.  It was yellow and the balloon had long since popped and been cut away.  I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped.  But Emma wasn’t interested in the balloon.  It was the string she wanted.  I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue.  Emma would intertwine the two, twist them together and twirl them.  This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about.  A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible.  Still, we have come to understand how important the string is.  When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand.  But it is always close by.  We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind.  I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

A collection of balloon strings

The string with masking tape.  A precursor to the colorful duck tape that would follow.

The string with masking tape. A precursor to the colorful duct tape that would follow.

The "string" with duck tape

The “string” with duct tape

Soma and Emma

Soma and Emma

“Social Impairment”

“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)

When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics.  As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.

Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely  masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation.  The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.

When my daughter described stimming as “self-care” (you can read that post ‘here‘) I  was filled with admiration.  Self care is such a wonderful way to describe what I see her doing.  Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others.  This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all.  To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do.  (That this last sentence is even necessary to write, demonstrates how far we have to go.)

This idea that autism characterized by “social impairments” is something that drives me crazy.  It isn’t a social impairment.  It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic.  My daughter does not lack a desire for friendship or have a disinterest in other people.   Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.

So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues.  Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise.   But when we were given Emma’s diagnosis, I did not question these various theories.  I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.

Oh how wrong I was…

Emma holding Teddy

Emma holding Teddy With her String

Compulsions

I’ve been thinking a great deal about “stimming” which was the topic of yesterday’s post.  Stimming or self-stimulation is the word used for what many children and adults do who have been diagnosed with autism.  It is the repetitive behavior, often as varied as the personalities of the person engaged in it, used to self-regulate or calm oneself.  Many people with autism suffer from a wide range of sensory issues.  Emma may well experience light and sound differently than I do, for example.  I know she experiences physical pain differently.  A small, seemingly incidental scratch causes her to howl in pain, clutching the injured body part, scratching at it or rubbing it vigorously.  Yet a fall, that looks extremely painful, will be ignored.  Days later a large bruise might appear or swelling, which only makes one that much more aware of how it must have hurt and yet she didn’t seem to notice.

Sometimes Emma will plug her ears with her fingers when someone is speaking, often it is when one of us join her in singing a song.  I’ve noticed she does this when her air conditioner is on as well.  The low hum it makes is something she is unable to tolerate.  All of these examples are specific to Emma.  And it makes me wonder whether there are many other things I cannot know about;  does she see certain colors in a way that is painful?  Are some colors brighter to her, even garish and therefore hurt her eyes to look at?  I know certain sounds hurt her ears, sounds like that hum of her air conditioner, does it merely bother her or is it actually painful?  I can’t know.  What I do know is that if  one was bombarded with images, noise, sensations that I could not verbalize, would I not seek refuge in something I could control?  I don’t know, but I think I would.  Is Emma, when she twirls the plastic backing to the velcro strip around and around, soothing herself from an overload of external senses?  It seems likely.

Yet how is this so different from addictive behavior?  Is it not somewhat similar or in the same general ball park?  If someone engages in hours of video game playing or round after round of Solitaire on their computer or Spider (my particular favorite), how is this not also a kind of stimming?  At the very least it is certainly perseverative behavior.   If the game was just played once or for a few minutes that would be one thing, but what of the person(s) who plays endless games, one after the other?  A friend of mine said to me a few months ago, “Sometimes I ask myself – how many times do I have to win before I’ll stop and say that’s enough?  Because when I win there’s no real satisfaction or feeling that – okay now I’m won, it’s time to stop.  I mean how many hours have I wasted playing a really stupid game on the computer over and over again?”  I’m guessing many people can relate to this.  Even if they aren’t into computer generated games, there are other things many of us engage in, mindless “games” or habits we do that we wish we didn’t.  Consider all the games, video games, obsessive exercising, compulsive eating, compulsive dieting, any and all obsessions, compulsions or habits that get in the way of our lives or health, all the things we do while knowing they aren’t good for us and yet we can’t help ourselves from doing them anyway?

When I watch Emma twirling her strip of plastic, while jumping up and down and singing I am reminded of my own perseverative behaviors, the hours I’ve spent doing mindless activities, all to what end?  Am I too, calming myself?  Is this my own brand of self soothing?  I have harsher judgements about my activities, particularly computer games, than I do of Emma’s activities.  I have even, periodically deleted all games from my computer or mechanical device, only to reinstall at a later date.  Certainly there is a compulsiveness to my behavior and I would even go so far as to say an obsessiveness.  I do not mean to suggest my OCD tendencies are remotely the same as what Emma must go through on a daily basis, that would be insensitive and dismissive of her very serious sensory and neurological issues, but I throw this out as something I’ve noticed and can relate to in a very superficial way.  Of course I could be completely wrong about all of this and anyway I have to hurry so that I can finish today’s crossword before starting my day.

For more on Emma’s journey through a childhood of autism and obsessive behavior go to:  www.Emmashopebook.com

The Velcro Strip

Emma’s balloon string has been officially replaced.  She now carries a long plastic strip, the kind you peel off a self adhesive velcro strip.  How such a bizarre and unlikely item came into her possession is anyone’s guess.

Emma with her plastic velcro strip this morning before going to school.

Over the past year or more Emma has become attached to an assortment of long, thin objects.  The first was a stick she picked up on a playground near the Bronx Zoo.  One can never know when an object will become a coveted one.  But I remember that stick because she wouldn’t let go of it, even when she swung on the monkey bars at the playground.  It was an odd thing to watch her movements so clearly hindered by her refusal to let go of that long stick.  When we made our way to the subway for the long ride home, we told her she could not bring the stick with her.  She didn’t put up a fight and I thought nothing more of it until I saw her, upon our return home, reach down to pick up another stick from the planter outside our building’s front door.

” No Em.  The stick stays outside,” I told her and she complied.

But it became a habit, each and every time we left the house she would find a stick and carry it with her.  A few months later she found a long plastic strip used to bind packages and began carrying, twirling and waving that around while inside our home.

Emma’s assortment of “strings”.

There are a few thoughts on this sort of behavior with autistic children.  Some believe the items should be removed.  The idea being the child should not be allowed to have them as they increase “stimming”.  Stimming – shorthand for self-stimulation is a word, which is much used when speaking of autism.  It is the repetitive behavior the child/person uses to soothe, calm or regulate themselves.  The objects are varied and can be anything from spoons to things like running water.  But some children do not engage an object at all.  These children do things like  hand flapping, twirling, spinning, rocking and even head banging, while others stare at their own fingers that they wave in front of their eyes, others tap their fingers rapidly, hum or grunt, bite or twirl their hair, lick surfaces or smell things.  What marks their behavior from so called neuro-typical behavior such as pacing, doodling and thumb twirling is the child who is autistic may engage in these behavior for hours at a time, often getting in the way of daily living and learning.

Others believe the child should be allowed to stim and feel it is better to allow the child to self regulate.  They believe it is, in fact, cruel to remove the source of comfort for these children/adults who are autistic.  Many people believe learning can take place despite the stimming.

I don’t fall squarely into either camp.  Richard and I have done our best to give her the freedom to have some objects – balloon strings, velcro strips etc. while telling her she cannot bring sharp, pointed or objects we think might accidentally hurt her into the house.  We do not allow her to have her “Coqui” aka scraps of blanket outside her bedroom because she can sit for hours at a time sucking her thumb, which is doing untold damage to her teeth.  When I am working with Emma she may not have anything in her hands as I need her hands free to type, write etc.  But when she has gotten dressed, brushed her teeth, straightened her room, she can race around the house on her scooter, carrying whatever long piece of string/plastic/packaging tape she likes.  It’s difficult to know whether we are doing the right thing, but for the moment this middle ground seems to work or, at the very least, not cause too much damage.

Earlier this morning when I was trying to take a picture of Emma with her velcro strip, she wouldn’t look at the camera.

“Hey Em.  Can you look at the camera?” I asked.

“Say cheeeeese!”  Emma said scrunching her face up into a hapless and obviously forced “smile”.

“No not like that.  Think of something happy.  What makes you happy?” I asked, pointing the camera at her.

“Mommy makes me happy,” she whispered.

And that makes me happier than she can ever know.

For more on Emma’s journey through a childhood of autism and arbitrary items that hold her interest go to:  www.EmmasHopeBook.com