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.
It’s interesting.. We ALL stim. I think, somehow, that Emma’s self-care or stim is much less self-destructive than most of the “self-care” my neuro typical peers regularly execute. For me, I “self-care” by picking and biting my fingernails and cuticles. This is my immediate go-to whenever I am not in a state of stasis- which is always. Constantly. Some people tic. Some people smoke. Some drink. Some exercise to excess. Some eat to excess. Why do we only label it “stimming” when it’s done by individuals with different neurology?
So it’s interesting the overlap, but also the difference in something that many would call a “bad habit” and something benign that causes no one harm.
As always with autism those so called bad habits become “behaviors” and are judged more harshly and with more hysteria than in the non autistic population. Parents might not like that their teenager has taken up smoking cigarettes, but they do not immediately put them into a behavior modification program. The double standards abound even as the assumptions for why such actions take place are almost always wrong.
That’s been pretty much my issue with “therapies” that target things that seem “too autistic” without regard to their function because various stims or objects that are soothing etc… they are most certainly self-care. To ignore that causes a lot of harm.
They are beyond benign but functional. Even the other things that make the hmm this looks too autistic list like repetitive behaviour is soothing for a lot of people. It has driven me batty for much of my life that “expert opinion” on what so much of it is or means is so completely wrong and then that drives notions that the utility of it is zero or less than that and thus it needs remediation when some of the time what may need to be worked on is actually to get a person to do more of the things that help.
For so many years I felt a great deal of shame is something as obvious as flapping happened in public. It would sometimes because I worked so hard to control it make me think hmm things might be worse than you think but I also put a value on the stims I had being discrete which meant that at times things got much worse for me than they would have if I had just felt okay with doing whatever I had to to cope.
I had friends when I was going through this who felt much more comfortable with the self-care approach however obvious which helped me move past it but that would in an autistic accepting kind of therapy be to me an acceptable goal. You cannot and should not feel shame becaue of who you are but decades of that piling up will take a toll. So stim as much as you need to as a goal seems so much better than we will extinguish this and not care that is self-care or never even notice that is it.
“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.”
I then find the sprite you conjure skipping easily into the space which musingsofanaspie creates with what she has to today say about play.
Colin – this was exactly what I thought when I saw Cynthia’s post this morning after publishing this one!
I don’t know if he would say it’s the same, but M’s lifelong attachment has been to a blanket my cousin made him when he was a baby. Even now, he does not want to sleep without it, and if the lights go out with that key element missing, we promptly hear a shout of “Blanket!!!”
It has been all over the country with him and us, from its origins in Montana, to California, and last summer, when we revisited MT, we showed my cousin, who couldn’t believe it was still in one piece. It actually isn’t *quite*. I had to cut a wide strip off of it after we discovered that silly putty does NOT come out of fabric. It got thrown out the car window once by its owner, who had discovered how exhilarating it is to see something go sailing away in the wind (that one I had to assign to my husband to spot on the way home from work, bc I couldn’t backtrack).
On the plane ride home from St. Louis at the end of our trip last year, the worst airline in the country made us change planes unannounced – we were in such a state of confusion that we forgot to do the final check. Blanket was not there once we got onto the other plane, and since we were already in the air on finding out, we could only sit and cry that his precious friend was missing. I mean really, the three of us were in tears. But M just sat there looking at us, and I couldn’t figure out why…a few hours after we got home, I unpacked his backpack, and there it was. He had done the final check and made sure blanket came home with us.
Em has a small piece of what was once a blanket as well.
Love the story about the airplane!
My daughter also uses strings, or sometimes strips of paper that she shreds into a string shape. She appears to process her world through these strings, holding one in each hand and waving them happily around the object that she is looking at, for example the television, or her big brother. She is only four and a half and cannot yet communicate as eloquently as your Emma. (She is nonspeaking, but has been learning to use AAC). Thank you so much for sharing this, as I had noticed Emma’s strings and was curious about what they meant for her. I can’t wait until my daughter can explain what they mean to her.
Maybe she will like knowing that others share her love of a good string!
I share that love too! right now I have a think strip of paper I really like flapping 🙂
I do love the “self-care” reference. No one stops NTs from any sort of self care. And yet autistics are constantly being denied their self care.
Yes, it is really awful…
Oh man, I really hope you can find her some advanced but accessible art programs, the sort of approach she has could really really translate to mixed media sculpture. Even if she doesn’t end up going the sculpture route… Unfortunately the complexly imagining programs in art don’t often end up being accessibly taught/run for people with Emma’s support needs. Super aggravating. But yeah, that has been my thought about the string comment of hers you shared.
Now that we are homeschooling, I have been thinking a great deal about introducing things like collage. It’s one of those art forms I have always loved looking at, but the mixed media, sculpture idea is so wonderful and one I hadn’t considered. Will begin investigating!
It’s pretty neat. There are probably some ideas out there for intro but it is just a really cool way of doing things. I’m kind of trying one myself where I am getting things that have been sliced or broken open and painting or trying to paint the broken edge that would have been the inside with galaxies. Like the birth of the cosmos inside of each thing.
I used to use a ballpoint pen, clicking it repeatedly, until I was made to feel so self-conscious about it by repeated criticism that I became too inhibited. Some “harmless” stims attract negative attention because others find them irritating, but they do not attempt to understand the underlying motivation.
At nearly 44 year of age, I still have a (small, ratty, smelly) piece of my childhood security blanket (it also has a secret name). While I rarely use it anymore, just knowing it’s there is a great comfort. I’ve never understood the need to separate people – NT or otherwise – from the non-harmful objects and behaviors that help us cope. Emma appears to be a glorious human being, and her lovely, whimsical strings are reflective of her beautiful mind.
I agree with you Susan. It does not make sense. At all.
So Beautiful, thank you for explaining this to us Emma and for Mom for putting it out there 🙂
This sounds just like my son and his twirly! 😀 Love it!
I so wish I could get my mother-in-law to read this to help her understand its purpose (she doesn’t understand English – any French-speaking self-care advocates out there?). Despite her obvious love for her grandson she seems unable to accept his twirling, which I find really sad.
We have discussed it many times and she firmly believes that when he twirls, he “is building a wall between us and him” and this must not be allowed as it prevents interaction (and therefore speech). I have tried telling her many times about what Emma and others have said about stimming and how it is a solution, NOT a problem, but unfortunately she just doesn’t get it. She has even told me I don’t have enough “faith” in him to be able to “overcome” his twirling.
I have threatened her that one day, I will follow her EVERYWHERE she goes, and EACH TIME she displays a behaviour I deem “inappropriate”, I will prevent her from doing it: “You’ve been reading that book for fifteen minutes! Put it down right now! You should be interacting with someone!”
Perhaps one day, she’ll get that epiphany…
If you can threaten her that you will follow her around I am pretty sure you can handle saying she is wrong and it is not up to her to judge his behaviour and what it means.
If you actually need help with the French (which seems doubtful as I said if you can threaten her) Work out what you want to say.
My French is decent but never have thought to blog in more than one language as usually I can’t even get one up in English.
The real wall would be if shame becomes attached to a necessary behaviour and then without a way to cope a person actually withdraws further. I nearly always keep my receptive ability but in extreme stress and lacking anyway to cope the world goes away far more than if I can do what I need to.
An example from my adult life that doesn’t seem very stimmy is hospitals and strange doctors are stressful. I had to have a consult and actually attending directly to the doctor given the level of stress was impossible. They commented they could come back when I wasn’t busy because I carried on using my tablet but they were at least open when I explained if I could split my attention then the odds were much higher that I would be able to endure the exam and their questions. That I needed to do that in order to stay present enough for the rest. Thankfully as I said they were open to that and once they knew why it was a non-issue.
Same with if healthcare people come to my home. Sometimes I need to keep working (one of the bits of my work is calming.) Some understand that others get cranky and demanding. The latter just makes it entirely impossible.
Thank you for your response, Gareeth. As you correctly guessed, I don’t need any help with the French language (I’ve lived here for many years), and I am more than able to handle saying what needs to be said to whoever needs to hear it. The stumbling block is getting her to listen to and believe it. I would love a French autistic voice for her – and others – to hear, or read.
Sadly, there are no blogs by French autistic people out there at the moment, only parental ones, and a great deal of those are unfortunately very misguided indeed. French autistics themselves mostly seem to be either institutionalised in Belgium or undergoing “packing therapy”, neither of which lends itself to spending time on the internet, but that’s a whole other post…
I do like and completely agree with what you had to say about attaching shame to a necessary behaviour and I will certainly say that to her. But it will be impossible to convince her that it IS necessary behaviour, and therein lies the problem.
Emma’s string seems like a very friendly and soothing self care method. Katrina has something similar but more inconvenient for the world of neuro typicals. She likes to fold paper in a certain way that makes noise. Then when she has folded it and it doesn’t make noise anymore she lies to tear little pieces off of it and drop them around wherever she is. Then she throws away the main piece but not all the little pieces. I generally don’t mind the paper folding much. It bothers people if we are in a meeting and some people can’t hear because of the crinkling paper. I have to admit that the little pieces all over the place can be irritating, especially if I have just cleaned. I usually try to have her clean them up herself and she usually does a fairly good job of it. She hasn’t explained about the paper, and I don’t know if she ever will. Fortunately, she has some other items that are less bothersome and she is usually willing to trade the paper for any transparent or reflective item, (she calls it “Mirror” or “window”). She also loves transparent balls and other toys you can get from the Dollar Tree, that light up when you throw or hit them. We are generally able to accommodate self soothing with a less bothersome item if needed. Katrina doesn’t get upset by switching her self soothing tools. She isn’t attached to any of them and will toss them off whenever she is done with them, so we don’t have to worry if something gets lost or damaged. This has pluses and minuses, since now we have a puppy who has chewed and possibly eaten several of her tools, (so far with no ill effect.)
oh i get it the string is Emma’s version of a security blanket that we all had as kids.
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