What follows is an interview I conducted this morning with Emma about stimming. Emma patiently tried to explain to me what stimming is like for her.
A: Is it okay to ask you some questions about stimming? (For those of you unfamiliar with the term, stimming is a repetitive action or verbal output.)
E: Stimming is fun. And I am in calming and obedient service to those who are in charge.
A: Are you being facetious when you write “obedient service to those who are in charge?”
E: (Smiles) Yes. (Laughs) The stim is a great way to roam around feelings that are too intense. You treat me like a baby.”
A: Are you speaking specifically to me or are you using a more universal “you”?
E: All people out there. Bloated feelings despair and anger me. Almost all feel too much to manage and I cannot be present all the time.
A: Can you tell me more about stimming?
E: I am not able to write about stimming because words cannot describe it.
A: Can I ask some specific questions about it though?
E: Yes. (Leans over and gives me kisses on my cheek.)
A: Is stimming ever not fun?
E: Yes. When feelings are too extreme, even a good stim won’t help.
A: Is there anything that will help?
E: A lot of patience and love. Acknowledge my attempts to self-care and do not cause me more pain by trying to change or control me.
A: What happens if someone stops or tries to stop you from stimming?
E: It makes thick feelings worse.
A: Do you ever feel stuck in repetitive loops?
E: Yes, but so do others who are not autistic, but they are called passionate and are looked up to instead of looked down on.
A: Yesterday you wrote: “Raging beasts of pain masquerading as stims cause many to misunderstand.” Can you elaborate on that?
E: Stims alter the persistent anxiety of life so that I am able to function as well as I am.
A: So you weren’t saying stims are painful as much as that they help you cope with the pain and anxiety you often feel?
E: It is impossible to describe to all who have not experienced a lot of distress. Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence. People treat those they believe stupid, very badly. I am not stupid.
A: I know you aren’t! You are the smartest person I have ever met!!
E: (Smiles and squeezes my arm.) I am intelligent and cannot speak with the same brilliant words that are in my mind.
The timer goes off.
E: Now we are all done!
A: Yes we are! Thank you Emma for your patience with me and helping me understand.
Addendum: I asked Emma just now if I could ask her one more question. She told me that I could.
A: Do you like the word “stimming” ?
A: Is there another word you’d prefer?
E: Yes, but words are not as meaningful to me as they are to those who talk all the time.
A: If you could choose any word other than stimming, what would it be?
Hi Emma, rock on with your facetious self! Love, Ib
Ibby from Ibbia! 💖
That’s pretty much my response all the time now!
Would you mind if I give out the link to this blog on linkedin? I’ve joined several autism groups as I’m wanting to move into a career in autism advocacy in some way (employment advocacy would be my strong suite, I think). There are a LOT of non-autistic voices in there, and I want to expose them to the autistic voices in the bloggosphere. Thanks!
Please do! Emma told me she wants “the world to know”. So yes!
Some of the most descriptive sentences I can find in any other person–and it’s in an eleven-year-old girl. Ever so much like what I write when my mind is going crazy. The more amazing the mind, the harder to get the thoughts out straight. Emma is brilliant.
Thank you Arianna – lovely name by the way 😉
Wow! Thank you both for sharing! You are making such a difference each and every day! Emma, your honesty is absolutely priceless!
Thank you Marge! This is quite the beginning to 2014!
Emma’s words amaze me I love reading her thoughts on your blog. It makes me look at my son in a totally different way. On the outside, he -seems- like a 4 year old in a ten year old body, but that just isn’t the truth of it…. Yesterday he was scribbling in a notebook. I looked at it when he was done, and was amazed. He wrote his current horrible teacher’s name, crossed it out heavily, wrote the name of a different teacher underneath and circled it. Wrote “new school” and “new bus” and “take backpack”. Might look like nonsense to some, but he managed to convey quite a lot of what I suspected he was feeling- He hates his teacher, she does not treat him right. He wants a different teacher, and he wants to go to a new school where he will be treated like a human. He wants a new bus, with a driver who won’t say thoughtlessly harsh things to him when he stims. I felt a sort of combination of sorrow, as he had confirmed what I had thought he was feeling at school and joy because he expressed his feelings so clearly. He is an amazing child, and if people would stop treating him like a dim witted toddler, he would be so much happier. I hope one day he can communicate his thoughts as beautifully as Emma does. I know he has those words in his head, he just has not found a way to get them out the way he wants them to be.
Absolutely, Amber. I would not question what he’s writing for a second. I think his brevity is perfect and gets the point across beautifully!
I am loving these responses directly from Emma. She is most certainly a brilliant young woman. Linnea
Yes she is! Now we just have to convince the rest of the world!
I am in love.
I wish every parent reads this every person who works with children with and without autism as we all stim sometimes we all have self coping mechanisms
Aw… Amanda… Thank you for this comment!!
I would be interested to know what Emma thinks of the actual word, “stimming”, as it seems like a word neurotypical people have come up with to describe something that they might perceive as being “abnormal”. From her statement, “they are called passionate and are looked up to instead of looked down on”, I have a feeling that she might choose another word.
Pascal – on the strength of your comment I added an addendum to the post. I asked her exactly this question. Read on. I so love what she said in response!!!
Emma- Thank you for helping change perceptions. I really think the incredibly hard work you are putting into writing your words is going to make huge waves in the world in terms of how “NT” people understand and react to autism, and I personally thank you for it so much. On a sidenote: I am proud PROUD PROUD to be the fifth person to have met you on the very special day you were born!
(((Rye Rye))) Who knew on that day that she was born what a magical life awaited us?!!
Self-care… yes… perfection ♥
I thought so too! Love “self-care” I intend to use that from now on.
I love “self-care”. It pretty much sums up why one needs to stim. And no one denies a NT self-care, now do they?
No they do not! And it’s yet another double standard that needs to end.
Yes, I also like the term “self-care” — I’ve also heard it called “calming behaviors” but Emma’s words are more to the point. The term “stimming” I believe originated in the phrase “self-stimulation”…
Yes, “self-stimulation” sounds vaguely creepy, or so I’ve always thought. It’s embedded with unspoken judgement. I’ve always hated it, glad to see Emma’s choice of “self-care” instead. It is a much gentler and more loving word(s) with no judgement or hidden meaning attached.
I love how she describes things. Emma should write poetry!
I think so too. This is something I plan to spend more time on, exposing her to some of my favorite poets and see what she likes!
Thank you Emma. A timely reminder.
That was an awesome interview! Emma is pretty awesome, and even though I don’t completely understand, her words have helped make my own thoughts more clear.
Glad to hear!
I just found you today when “Sleep Deprivation Diaries” reposted this and I’m so glad she did! What amazing insight for this mama with a 7 year old nonverbal autistic son. Emma is brilliant and I know that my Brian is too but I just have to help him find a way to communicate with the world. May I share your daughter’s beautiful words?
Yes, please if you share the link and quote a passage or so, that would be wonderful!!
Thank you so much!
Good job friend Emma, love big Emma. I believe stimming for you is same manner however I am not one to twirl or use items. I stim verbal noises. I love inside the feeling of pressure building are power eruptions inside my heart.
(((Emma))) This is Ariane speaking. Em is tired tonight and so I haven’t been able to show her all the comments coming in. But I will once we are back home. Sending you love.
I just wanted to comment on the internal building pressure…when I was Em’s age it became overwhelming. I was trying to begin menses, but did not have the right hormonal makings and felt much like I do at menopause! But the pressure and the ways I was left to deal with it was through medications forced on me, or self-medications of drugs stolen from others’ medicine cabinets. I felt for sure I would severely injure someone if I didn’t keep this all inside. It took me 30 years to devise ways to let the pressure out in “one long burp” I called it…not too much at once, but like a release valve opened, and it was through a balance of physical exercise and immune system modulation I was allowed to finally have some semblance of physical-emotional-spiritual balance. That’s all out of me…need to practice what I am preaching and go out and enjoy the day!
“Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence. People treat those they believe stupid, very badly. I am not stupid.”
This is why it is so, so important that society stop writing off people like Emma, who find a way to communicate, as exceptions to the rule, and other autistic people who haven’t yet as incapable and without intelligence or self-awareness. And I get so mad when other experts lecture us about needing to understand that most other non-verbal/non-speaking autistic people will never be capable of giving an interview or communicating like this.
Because it’s true that some people might not, but that’s not an excuse to treat them like they’re stupid, unaware, or less than a real person. If you have no way of knowing what’s going on inside a person, you can’t just assume that it’s nothing worthwhile, but that’s what people do when someone can’t communicate their way.
What I am seeing more and more, is that not only is my daughter not an anomaly, in fact, she is very, very similar to so many other kids who people have completely written off, kids who are segregated in special education schools, children who most people do not believe are capable of anything beyond “life skills” classes and picture books. Yes, this absolutely MUST change. Sadly there are many who oppose any attempts. The fight will be tough, but there are many who are fighting and will continue to, until our children no longer need us to… hoping I live to see that in my lifetime…
This is life altering, revolutionary information. Emma you are so amazing and brilliant and so kind. You are also incredibly patient, thank you.
Thank you Shenny!
Hi Ariane and Emma,
I have been enjoying reading your posts to Philip. Here’s a bit of our conversation:
Me (before I read the post): I would like to read you what Emma wrote about stimming. But first can you tell me what you think about stimming?
P: Stimming is each time I deal with stress. I am respecting my body’s needs to mend itself from tension, hurt, and stress.
We talked some more about stims and then I read Emma’s words. I asked him what he thought and he spelled, “It is right on. I like stims the same way she does. I am eager to meet her someday.”
Aw… so great, Lisa! Love Philip’s words!
So good to hear further confirmation from another self-caring person too. Thank you Philip.
I’m wondering if any of you would mind telling me, could picking/biting/scratching at self – fingers, cuticles, scabs from booboos be seen as self-care/stimming?
My one word would be “accommodation” (of my nervous system).
(((Bev))) Accommodation is a nice word.
Emma, words fail me now…except: “Self care” = Perfect!
Self-Care is so perfect. I talked to my kids about it, and we at the Fahrali-Simonson household agree it is spot on. Can’t even think of anything better. Thank you Emma, I think you just changed the language all together.. I can’t wait to read the Self-Care book by Emma. 🙂
Ha! Love the “Self-Care Book” that sounds like a best selling title that all human being could benefit from!
Maybe the self-care book needs to be written collaboratively. Many voices can add different dimensions and may be less likely to be seen as an anomaly by NTs. I hope to see it on the shelves soon. LOL!
Thank you Emma. Self care is exactly what stimming is, yet I’d not thought to call it that before. It’s also awesome and happy making 🙂
We’re big fans of stimming/self care here. It helps us cope with life when it’s too much, or express our happiness when we feel like we’ll burst. Definitely a positive part of being autistic, and can be awesome communication sometimes as well when words are hard (at least it is for my husband and I- we can read each other’s emotions based on stims).
This idea that stimming is a “positive part of being autistic” is such an important one! (At least it seems to me as a parent who was not told of this until I read Julia Bascom’s blog.) Julia’s beautiful blog changed everything for us. It was really the beginning… definitely needs to be more widely known!
Thanks for the share.
I love what you’ve written, almost as much as I love my SPD nephew for being just exactly him. How special and lucky! It’s making me think about mindfulness practice too – being more aware of what a behaviour (self-caring/stimming) actually means for ‘us’, without stopping or interfering with that behaviour, just noticing and acknowledging seems profound.
I so love what I’m getting from. This blog, it’s making my mind do cartwheels of joyful exploration and leaps. Thank you all so much for sharing your worlds.
Emma is so smart. she has her own way of looking at the words. you can tell by her choice of words. stimming really is fun and calming and helps to concentrate. what are her stims?
Em told me it was okay to tell you that her favorites are her “string” which is some plastic packing tape that she rips into thinner pieces and winds around each other and her verbal stims and utterances.
LOVE her so much 🙂 Self-care, that is revolutionary and I believe to so many autistics will sigh with relief of the re-wording of this vital part of so many of their lives.
I like the word stimming. I like that Emma calls it self-care but I would distinguish between types of self-care, and I also want to reclaim the word stimming from whatever sources it sprang from. My son and I always say “Stimmy!” about things that we like. P.S. Emma and others don’t have to like it. We are going to keep using it though.
I believe the word “stimming” came from “self-stimulation”, which was from the old thought that people with autism were so into themselves that they could not feel anything from around them or others, and in order to feel something they self-stimulated. I thought that was an outside-in view, as I have a habit that I try hard not to do in “Public”, but sometimes constantly find myself doing at certain times and don’t know why those times and not others. I had also been a picker–picking everything, anything that looked out of place from a thing on my skin to pieces of yard in blankets, etc. I think they are all a part of smoothing over flares in my nervous system.
Yes! “Self-care” totally blew my mind! Thank you so so much for sharing this with everyone, Emma! Love it!
I’ve never been quite comfortable with either other term: to me “self-stimulation” tastes a bit medicinal and harsh, while “stimming” tastes like an artificially sweetened version of the former. I guess I’d rather the fauxberry-flavored offering than the plain one but I’d much prefer to avoid both (thanks to Emma now I can)! Either way, self-care (as a human right) and the patience+love from others (as a safety net when feelings are too extreme) should never be denied!
VIVE LA SELF-CARE! (Vive la soin de soi?)
OMG, Bev! You have responded to the question I’ve just asked above. I hadn’t got down this far in the thread. I think I may be self-diagnosing as Aspie. This is a revelation for me, at age 52! Sorry if I’m bombarding the blog, Emma & Ariane. So exciting! I have so many questions… anyone got time, thoughts on where I can ask them?
There are a number of really wonderful blogs written by women on the spectrum. The resources page on this blog is divided into non-speaking and speaking, but a few of my favorites are:
musings of an aspie – http://musingsofanaspie.com
A Quiet Week – http://aquietweek.com
It’s Bridget’s Word – http://itsbridgetsword.wordpress.com
S.R. Salas – http://srsalas.com
The Caffeinated Autistic – http://thecaffeinatedautistic.wordpress.com
The Third Glance – http://thethirdglance.wordpress.com
Too many to list here, but these are a good starting point, particularly Cynthia’s Musings of an Aspie as she writes about getting a late diagnosis and has a book just out that covers that topic pretty extensively. Hope these help!
Thanks Ariane. I discovered your resources page and that blog through it. Looking forward to reading more of it when I have time.
Also, from what I have heard, Stephen Shore originated saying “Stimmy!”
I love “stimmy” that’s really great and has a fun sound to it. My biggest objection to “self stimulatory” is that it sounds so puritanical and as such has a really negative and judgmental association to it (at least this is my take). I love that you, Paula, and others are reclaiming the word!
Years ago when I visited the Option Institute for a workshop, I went to a presentation on the Son-Rise autism treatment that’s offered there. It’s a program that “seek[s] to engage the child in their world first, … then [guides] them into ours.” I asked the moderator whether, after the children “recover” (and forgive me if that’s an incorrect term; I mean no offense), they can recall what it was like to be in their incommunicative state. He said that most of them don’t, but one had said he remembers how really, really fun it had been to shake his hands.
How weird, I remember where I came from–inside-out, but maybe beause I am not all the way out?? I can go reach in to others and be where they are…and know sometimes exactly what to do for them, from stretching to “informed touch” to introducing them to animals and helping them heal on the inside so they can go in and out of themselves. I wonder if this is true of other recovering from autism?
I love Emma’s description of stimming as self-care. That’s it exactly! I’m going to adopt that word to describe stimming from now now. “Stimming” has never sat well with me either…it always seemed like such a odd word that could be easily misunderstood. Love Emma’s brilliance! So glad she allows you to share with us!
Thanks Rae, me too!
All I can say wow wow and Thank you God bless you :]
I love this post so much. I’m a autistic adult with three autistic children (4, 4 and 2) and I love hearing Emma’s perspective. I wish I had been raised by parents who respected my neurology and helped me be myself. I’ve been reading a long time but this is my first time commenting because I never quite know what to say/how to say the depth of my appreciation for Emma’s posts.
Aw… Courtney! Thank you so much for commenting, you said it beautifully. I just showed Em this and she wrote, “So happy you are commenting”
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Emma is very, very smart and I agree with everything that she had to say. Ariane, you are raising a beautiful person.
Aw… thank you CC, I couldn’t agree more!!
Emma has a little string?! My son has twigs. Always he hunts around for ideal twigs or sometimes a straw or cable tie, but twigs are best as he can bend them to shapes he likes and then spin them. He will then run around intently looking at them closely. Many of the trees around our property are stripped of twigs for this reason. I am happy for him to do this as it’s something he obviously wants to do, so why stop it?
The other thing he does is bang things. We have many cupboards with broken hinges. Meh, it’s no big deal, and we divert him to bang on outside stuff somewhat.
Thank you for your words about stimming Emma, it helps me understand my son better, and so that helps me make things better for my son.
Thank you for your blog Ariane.
Yes, it’s packing tape from UPS or FedEx. The super of our building brings her bundles of it every few months and she makes new pieces that she winds together and twirls. I think of it as moving art that is always in progress!
I love the way that Emma uses language; her words are a joy to read. I’ve only just started reading this blog but I already think that she’s as good as Keats (who is one of my favourite poets). If she ever does take up poetry as a form of writing, I’m sure she’ll be phenomenal, but her words will always be poetic no matter what form they’re in. I’m so glad to have encountered her voice through your blog.
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