“Self-Injurious Behaviors” ~ Let’s Discuss

I’m continuing to research SIBs, which stands for “self-injurious behaviors”.  It’s far too complex a topic to tackle in a quick  800 – 1000 word post. There are a number of topics it seems important to discuss,  which all fall under the heading of “self-injurious behavior.” (Feel free to add more in the comments section, this is definitely a work in progress.)   I’ve broken these topics down to include:

  • The language we use to describe such actions.
  • The perception (usually of neurotypical parents, caregivers, doctors, school employees, educators and the general public) of what these actions may or may not mean, this is particularly critical when the person taking such actions is partially speaking or non-speaking.
  • The personal experiences of those who have engaged in such actions that may or may not lead to real injury.
  • The experience of those who want to help and/or are in a position where they may be held accountable for the actions or inactions taken.  (This includes parents who love their child and would do anything to lessen their child’s frustration and pain.)
  • What can be done to help those who head bang, bite, pinch, punch or engage in actions that lead to serious and/or permanent injury?
  • What can be done to help those who head bang, bite, pinch, punch or engage in actions that are difficult to witness, but do not lead to permanent or serious injury?

I will try to cover all these various sub-topics, but first I’m going to tell you a story.

Emma sits cross-legged on the floor in our living room.  Her tutu billows about her plump legs, it’s pink ribbon sash lies undone near her.  In one hand she holds one of my red suede pumps, it’s small round heel directed at her forehead.   Wordlessly she smacks her head with the shoe’s heel over and over again as if she were driving a nail into a wooden plank. 

“ NO!  Emma, don’t!” I plead, running over to her.  I take the shoe from her, kneeling down to survey the damage.   There is no blood, just a small pink mark above her left eye where the heel made contact.

Instinctively I pull her into me wanting to comfort, but she resists.  She stares over my shoulder.  No sign of pain, there are no tears, no distress.  Her face is the face of a perfectly content toddler.  Whatever emotional trauma I imagine for her is mine alone.  She turns away from me and reaches for the other shoe lying a few feet away. 

“No Emma!  You cannot hurt yourself,” I say as though this were a natural thing to remind such a young child.  Bewilderment overwhelms my shock.  Emma stands up and wanders off, leaving me with one red shoe in each hand.

This was how I responded to Emma’s seemingly bizarre actions.  This was how I continued to respond to Emma when she began to bite herself.  This was all I knew to do.  Remove the thing that was causing damage, except that when that “thing” was her own fist or fingers or teeth I was powerless and defeated.  So I begged her, pleaded with her to stop, usually in a loud, panic-stricken voice.  Why was she feeling compelled to do such a thing?  Was it a deep need for sensory input? Did her head hurt?  Was she trying to cope with internal pain caused by some outside source – the daylight streaming in through the window, the heat from the radiator, the clicking noise the steam heat made as it surged through the pipes, was there some noise only she could hear that bothered her, did the fabric from her tutu itch or dig into her skin, or was it something else that I couldn’t see or understand?

I spoke with experts, doctors and other parents, but I never learned how to help her.  I watched YouTube videos and read research articles, I spoke to school staff, psychologists and people who work in hospitals.  Nothing I read or heard about made much difference other than to make me feel even more panicked and fearful.  The language used by those in the field of Autism is almost uniformly fear based and along the lines of deficit thinking.  By saying someone is engaging in “self-injurious behavior” we are suggesting they choose to “behave” this way.  But what if this is actually incorrect?  What if you were unable to make yourself understood through spoken language and had a horrific headache?  What if you could not use words to describe the pain you were in?  What might you do?  What if you felt such a surge of frustration you lost the ability to speak?  What if you could not find something or something broke or the music you were listening to or the DVD you were watching was calming and beautiful and it suddenly, abruptly, stopped or skipped, what if you needed it and now it was gone?    What if the only way you felt better and calmer was by hitting yourself.  What if the very sensation viewed by onlookers as harmful was actually helpful to you?

To someone like my daughter, her response to upset of various kinds is not the response of a child being difficult or bratty or frustrated.  Hers is the response of someone who’s world is coming to an end.  She is in full panic mode.  If she said, “I can’t take this.  I’m feeling completely overwhelmed, I don’t know how much longer I can hold on, I just want to scream and punch something!”  We would nod our heads and say, “gosh I know exactly how you feel!  I’ve felt that way too!  Let’s talk about it!”  We would go over and hug her and she would take solace in knowing she wasn’t alone and the hug might make her feel loved and she might even feel safe enough to talk about it more.  Her situation wouldn’t change, the feelings leading up to uttering those words might not change, she may still feel overwhelmed and not know how to change those feelings, but through talking about them, we talkers have come to see there’s some comfort to be had, because our brains are programmed that way.  This is what most of us, who are more neurotypical than not, have found.  Except that my daughter’s brain doesn’t work that way.  Talking and hugs do not help her when she feels overwhelmed, in fact talking and hugs increase her upset!

In addition Emma’s experience of pain is different from mine and many people’s.  Emma can twist and yank out a tooth within an hour of it feeling even slightly loose.  Emma can have an ear infection that is so bad the pediatrician was incredulous.  Emma can show no signs of illness but is found to have strep throat, caught by her doctor only because we happened to be in his office for a routine wellness check up.  Emma craves sensory input on a level Richard and I find astonishing.  She turns the volume up as high as the TV or DVD player will go of her favorite songs or movies.  We are literally blasted out of the room she is in.  Sensory input is needed at levels we cannot tolerate.  For Emma this isn’t a “behavior” this is a need.  How this plays out when she bites or hits I cannot fully know, but that they do, is something I feel sure of.

Last summer I spoke to my friend Ibby who explained why yelling at Emma to stop hurting herself was not working.  “It’s a lie,” Ib said.  She explained that by telling her she “couldn’t” do something, something she’d just done right in front of me, as evidenced by the teeth marks on her arm, was a lie.   A lie that made no logical sense.  So I stopped saying things like that.  Soon after I stopped yelling at her, I realized that anything I said could be heard as scolding, judgmental and counterproductive, especially when done in a loud voice.  Now that I have a better understanding of language and how language can come and go, I understand it isn’t just Emma’s ability to communicate, it’s her ability to understand all verbal communication.  All spoken language, both hers and anyone else’s goes out the window.

I have to stop talking.  This is counter intuitive for me, but it’s key.  Stop talking.  I have to remind myself of this.  If Emma is in the midst of an upset where she has begun to bite herself, no amount of logic will prevent her from biting mid-bite.  When Emma is biting herself this is an indication to me that I need to be quiet.  Sometimes she will come to me and allow me to put my arms around her in a firm embrace, other times she will reject all contact.  In the midst of an upset I have learned the single best thing I can do is – nothing.  No words, no physical contact, nothing.  I remain nearby and I wait for her to come to me if she needs or wants to.  Once she is calmer, I have a chance at figuring out what led up to the upset… maybe.  Once she is calmer I can try to see if there’s a pattern so that I can interrupt it next time before she gets to the point where biting herself seems like the only solution.

The single most unproductive thing I can do in the midst of Emma’s upset is to scold, admonish, restrain and judge her.  This may seem obvious to many of you, but it wasn’t obvious to me.  Some of the things others have recommended:

Judy Endow wrote:  “DISCOVER AND ELIMINATE PHYSICAL PAIN.  I have worked with many autistics who REAL PAIN and trying to change behaviors is like telling someone you love that you don’t want to know anything at all about their pain and in fact you want them to learn to behave as if they did not have any pain at all! So many behaviors turn out to be physical – one little girl who banged her head so hard it put holes in the walls, caused concussion and wore a locked helmet was discovered to have had head lice for so long that the lice had burrowed so far under her skin she had to have some sort of specialized treatment more than lice shampoo to get rid of them. She had lice for over 3 years before it was discovered due to them burrowed under her scalp!!! Once the lice was gone so was the head banging.”

(Judy Endow has written a terrific work book Outsmarting Explosive Behavior and while she doesn’t mention “SIBs” specifically, the steps she suggests will certainly be helpful for many.)

In answer to my question “Was there anything that helped?  If so, what?”  Kassiane wrote:  “Treating my cluster headaches. Leaving the SIB alone, treating it not just as a ‘mysterious autism behavior’ but as a release valve for stress, & eliminating or reducing the input that was pushing that far. Changing the situation has a much higher success rate than “stop doing that”, because I need a way to cope with the situation that leads to chewing my hand…I dont even notice until I’m a bit…gnawed.

Anonymous 1 wrote:  “I do remember, in those early days, that I liked the head-bashing because I only needed to do it once or twice. I could pound my fists into the dirt until my knuckles scabbed up, but the pain that I felt would barely measure up to the sound of my own screaming in my head. No matter how much I tried to let it out, it just never worked. I would punch myself into exhaustion and fall asleep, still feeling completely trapped, helpless, and alone. I would wake up afterward hearing my own screaming in my head.

 “When I bashed my head, though, the screaming stopped. It just cut off, and then the pain spread over my entire scalp, like a blanket over my brain.

Anonymous 2 described a prickly sensation all over their scalp caused by a new haircut.

Many spoke of the frustration leading up to the biting, hitting, etc.  Redirection seemed to help less serious actions, but everyone, everyone agreed that scolding, punishment or anything that could be viewed as punishment made the punching, hitting, banging and pinching much, much worse.

Having said all of this, we are fortunate in that Emma has never done more than left a mark on her arm or hand.  But there are others who do.  There are children and people who break bones, break the skin, and do permanent damage to themselves.  What then?  What does one do to help them?  What can be done?

I’m afraid I have no answers for these situations.  But whatever the “remedy” or “therapy” being employed, we have to ask the person who is being subjected to these various things if it is in fact helpful and if they are unable to communicate by typing, writing or speaking, we must ask ourselves  –  Would I want to be treated this way?  This is, at least, a starting point.

45 responses to ““Self-Injurious Behaviors” ~ Let’s Discuss

  1. Let me ask you this, Ariane. What makes you laugh? What makes you cry? It is certainly not always the same thing. How do you explain a joke to someone who does not understand humor? So it is, at least in my experience, with head banging. I know there is sometimes a sensation in the front of my head that is a nebulous “not right”, sometimes numb, sometimes too full. It is just not right, and there is an urge to pound it. This is what I related to with your story of sweet pink tuu tuued Emma. Something’s not right. Hit. I could be completely wrong, but, based on my own experience, I would try this: Rub your hands together and find the two hollows in the back of her neck, at the base of her skull. Stand at her side and put the flat palm of one hand across her forhead. Take the thumb and middle finger on the other hand and find those hollows. Press firmly and gently on both her forehead and the hollows, pushing the hollows in and up. Not too hard! Hold for 30 seconds to one minute and release. Wait, and see how she is, then repeat if needed. This also works on regular headaches!
    I have noticed it is pretty common for autists to enjoy pressing their foreheads against someone else. Seems comforting, and helps regulate the head feeling a bit, like swinging or rocking.
    This is not the whole story, but, perhaps, a bit more for you ❤

  2. You’ve managed to cover a lot of territory in a reasoned and thoughtful way. Thank you for taking this on. I hope people listen, really listen, to what you and those you quoted have said. I hope your post opens the subject up for further discussion, here and elsewhere, because it feels so important to think and talk about SIB in new ways.

    The notion that SIB is a behavior, that autistic individuals are trying to accomplish some externally motivated goal (attention, avoiding an activity) makes no sense to me. I read this again and again in autism literature and it only reminds me how utterly clueless the “experts” are about some aspects of autism. Head banging and other SIB is, as you described, a need, much like eating when we feel hungry or sleeping when we feel tired. It’s as much (or more) biological as psychological.

    • Oh good, I hoped that was what people would hear in this. I will have to write another post with more quotes from people as they have been incredibly insightful and helpful. All have emphasized what you just wrote, that it is a need and often not something that is readily substituted.

  3. This is a toughy. Maybe the toughest thing I’ve had to cope with related to Emma’s autism. When we first got the diagnosis I only had two frames of reference for Autism: the movie “Rainman” and stories about autistic children banging their heads on the floor. Since Emma had never hurt herself at the time of her diagnosis, my thoughts were: “Whew. Thank god she’s not one of the kids that hurt themselves. I didn’t see the incident Ariane described here, but when Emma bit her arm for the first time in front of me, I was horrified. I don’t think this kind of reaction is confined to parents of autistic children. No sane parent wants to witness their children hurting themselves, whether through compulsive/addictive behaviors or for any reason. As Ariane says, this is really difficult to cope with. I’ve been guilty of scolding her afterward on numerous occasions. I’ve told her repeatedly that she MUST come talk to me or Ariane when she’s getting too frustrated, so we can try and solve the problem and reduce her stress. Sometimes she does, sometimes not–and we hear her scream. Since Ariane started asking her adult autistic friends for advice, I at least know enough not to scold her or shame her. So that’s a plus. But this is a very difficult topic for me and one I’ll never be fully comfortable around.

  4. I used to head-bang and I have felt the relief of re-opening wounds on my arms when I was highly stressed. When the worry or stress was gone I would go off and do playful things. I cannot say much about humans, but I know that cats and dogs, horses can start these types of behaviors when they feel stress. Stress that they experience are often from unnatural and scary situations they may be in [one hated being separated from all social contact when the owner went to work]. Finding another way to relive stress would be good, but often the other ideas are not satisfying. Often the ability to feel the same way that a non-autistic feels about other stress relief methods is not possible because we have autistic-unique brains and past experiences. Cats and dogs get put on medications –this only work in a limited amount of the pets. These facts need to be considered when working on this while also not expecting the person to change if the stress is still there. I would say that further teaching of very accurate and descriptive communication would help to at least find the root of the problem “from the horse’s mouth”. Sadly, this communication ability is what most animals lack [ they need real behavior experts to translate] thus using this advantage for humans is in order. [BTW referring to animals is no disrespect in my thinking.]

  5. I’m… happy to read this. I needed to read and wanted/want to know. But as you said, the absolute and correct answers are incredibly illusive. For the next few months this topic will be foremost of the information I’ll gather for my department. School bus drivers and their assistants need to know more. The pressure that builds up for our employees when they must sit without knowing what to do is enormous. I’d like to find a way to encourage them and to ease their minds, if only a little bit. I’ll buy the book mentioned and, if any of you have more you can say… Please write. We need to find a better way to help our kids.

    • Jesse, I cannot tell you how many people have asked me to thank you. Thank you for caring. Thank you for being such a kind human being. Thank you for taking such good care of our kids. I am not the only parent who wishes my child could be driven by you on your bus. (Even though we’re in the middle of an endless bus strike!)

      • That’s very kind of you to say. Next time you come down to Aspen, please feel free to come to the Cherry Creek school district (in Aurora). We’d be VERY happy to hear what you might have to say and, I’m sure I can find a spare seat on any of our buses so you can observe for yourself what we do. 🙂

  6. Thanks for this, Ariane… you have made some great points. My family member is 43 years old, and as an adult, he has many other people in his daily life now besides me. After many years of me ‘not talking’ during meltdowns, and seeing, as you have, that it works best…. I find that at this point the most difficult aspect of this is helping/teaching/encouraging others in his life to hold back as well. By far, his most difficult days are those out in the community with support people who have difficulty not ‘helping him’ through his meltdowns. It is his greatest challenge. What is wonderful, however, is how much his home has become a safe, predictable, peaceful comfort zone for him to return to.

    • Are you the one who runs Juniper Hill Farms? I have been to your website and was struck by how wonderful it seems. Thanks so much for sharing this. Yes, safe, predictable, peaceful… Sounds perfect!

  7. Yes, thanks Ariane! These guys really are great to come home to….

  8. I used to cut and burn myself as a kid. The first time, I was five years old. I wanted to know if it would hurt to staple myself with the stapler. I was just curious. I wanted to know if I would cry, because my neighbour who was six had cried when he accidentally did it. So I tried it out in private. It didn’t hurt hardly at all. I didn’t cry. For me, it was very grounding. It calmed me down. It released pent up stuff that I had going on inside. It helped me find myself in time and space. Even injuries that required stitches weren’t very painful to me. If I tried to do it now, it would hurt too much to do it, but then… it was painful enough for me to notice but it didn’t really hurt. It just helped me focus and calm down. It quieted stuff down in my head. I had lots of reasons for doing it. It was soothing. It helped, but it didn’t help enough, because I had to keep doing it to get the same results.

    When they found out, the therapists took my privacy away. I was a teenager and I wasn’t even allowed to use the bathroom by myself anymore, was forced to sleep in my parent’s room, wasn’t allowed a moment to myself. It made it much worse. Now, any second I got alone, any moment with my parent’s back turned was a moment that I had to do it because I wouldn’t have a chance later. I went from doing it a few times a day to hundreds of times a day, to make the most of each moment of privacy. The injuries were less severe, but the frequency shot way up. It was a very horrible time for me. I know my parents didnt know what to do and were just following doctors orders and I know they were at their wits end. I can forgive them for doing the best they could with the information they had available to them. I’m still angry at that therapist because she at least should have known better, but she didn’t.

    I stopped on my own, as an adult. I stopped when I was ready to. It wasn’t easy. I decided to make the last scar something memorable, something that would be pleasing to have as the last, and that would deter me from doing anything in the future, because I’d have to come up with something better to be the new last. So, I made a fractal. It’s still there. It was the last. It’s been many years now. I just needed time and space and to want to stop and to no longer be in the situation I was in when I was doing it.

    • Hey… thank you so much for sharing this. The more emails and comments I get, the more convinced I am that this topic isn’t just deeply misunderstood by the so-called “experts” but the way in which people are thinking about it, really needs to shift. Thanks again!

    • Ya when I got sent to a rtc for self harm I couldn’t go the bathroom take a shower or sleep without anyone watching heck I had to stay on my mattress all day for days doing nothing except eating at meal times sleeping at night ( with staff watching and if my hands weren’t showing they woke me up) and using the bathroom when needed this made my si worse because I had nothing else to do ( oh I couldn’t talk to anyone either) but think about my urges it drove me to wanting to kill myself who wouldn’t I was a prisoner in all terms of the word it wasn’t untill I was given more freedom and wasn’t held down when upset that I began to recover who is anyone kidding my rtc was abusive no way around that fact yet my parents are thankful they saved my life ( except I wasn’t sucidial untill they did this stuff) i can’t blame them they just saw me stop sib not the trauma that was inflicted in me there the one thing that kept me going was my fav horse their not like I could go see him at that time but that’s what kept me somewhat sane knowing that maybe one day id b free again

  9. I have learnt through experience that theres always a reason when my son hits himself. When he does it I no longer tell him to stop, as it is (in his case) a communication and so its a matter of finding out what the problem is and dealing to that.

    • Em is the same. It is the only way she can express her deep frustration. Once we locate the source and can fix/repair/promise to replace etc then we can almost always redirect and she’s cheerful again.
      When she was much younger, as I wrote about in the post, when she was two, I now believe she was seeking sensory input as there was no sign of frustration or upset of any kind. It may have been that she was sensing a change in the air pressure or perhaps she had a head ache, it’s hard to say. But those are two different things, both seen (by me) as horrible and something that needed to be stopped, but to her, not so much…
      It’s good to hear from you! 🙂

      • Thank you, nice to be here 🙂 You do a great job with this blog.

        It’s an interesting job being parent-detective alright. The more I watch my son over the years the less odd he seems to me and the more the things he does make sense to me. Sometimes this is just from observation, sometimes it takes more and I have to really think about whats going on with him, and around him. And sometimes of course we just don’t know, but we keep trying.

        For the last two or so years my son’s main interest is obsessively bending little sticks or straw into a Z sort of shape. The two inside angles being about 80-85 degrees. Then once this shape is reached spinning it between his forefinger and thumb and observing. Prior to this ‘phase’ it was making equilateral triangles out of objects and examining the inside and outside angles. It makes him happy, and I sure would like to understand this one day! If I could see specifically what it is he likes about this activity and these shapes, then maybe I could expand upon that and lead him in other directions that he might enjoy.

  10. I don’t have Autism but i gather the frustration of not being able to communicate effectively what’s bothering them causes kids with Autism to hurt themselves.

  11. Wonderful discussion of a very difficult subject. I have found that even when a person who is unable to speak has access to alternative forms of communication, such as typing, it is still very hard – even impossible – for many folks on the autism spectrum to answer the question of “What’s wrong?” So the frustration of being unable to communicate is further complicated by an inability to understand and interpret signals from their own bodies. I totally agree that less is more, and the best approach is to quietly let them know we are there for them, and always trying to figure out out to be really helpful and supportive.

  12. I don’t know if I’m autistic or not (awaiting assessment – enough who know stuff about autism think I am that I don’t think it’s unreasonable, plus I’ve suspected since like 15 when I first read the definition of Asperger’s disorder), but I self harm.

    I almost wrote “used to”, then remembered that I still do pretty much everything I used to except cutting, so I guess I still do.

    I thought you might want some first-hand input?

    I can’t remember when I started subconsciously, but consciously? I was 8, and I accidentally cut myself with something when I was in serious pain mentally, and all the emotion just kind of bled out with the cut. And I made the connection that, for me, cutting my skin led to pain leaking away. Now I get that feeling through writing, which is why I -HAVE TO- write when I’m really upset. It’s a must. Otherwise, I’ll move to other ways to get the emotion out and, no, I can’t talk about it because when I’m that upset it’s hard to string words together without stuttering. When I’m that upset, it bleeds through to my writing, and my writing becomes all run-on sentences and abuse of parentheses and spaces optional. Not that I’m good with run-on sentences or parentheses on a good day… Anyway. Back on topic:

    Each of my SIBs has a different cause: I bite my hands/arms when anxious. Pinch my hands when I’m scared of something – so, I bite hands/arm if I’m preparing for a talk and nervous, but pinch my hands if I’m getting ready to have a needle (I hate needles). I bite or pinch my lips when I’m thinking hard, particularly if I’m trying to articulate something difficult to put into words (I’ve been alternating biting/pinching my lips throughout writing this, actually, because my self-injurious behavior was something Not Talked About growing-up, so while I welcome the excuse to contemplate what it meant for me, it’s hard to overcome the feeling of You Shall Not Think About This). Biting and pinching isn’t hard enough to break the skin, but is usually hard enough to leave a mark and sometimes hard enough to bruise. Unless I’m just thinking, in which case it’s juust hard enough that it starts to feel a hint of pain. I lightly pull my hair when restless or trying to focus on something. I’ll hit myself (usually on the thigh) when angry but not frustrated. Frustration, for me, usually leads to tears, so people think I’m sad or hurt when I’m just really, really frustrated. I’ll also cry when I’m overwhelmed with happiness, so people get right confused when something good happens and I break down in a sobbing mess (“But this is a good thing! Shouldn’t you be happy?” “I am!” “Why are you crying, then?”). All the above SIBs are for pretty much the same underlying idea: They give me something in me to focus on so I can block everything else out.

    Cutting was different (I don’t do it anymore because writing filled that niche): I used to cut when in deep pain, the kind you feel when you know that you’re alone, nobody understands and furthermore, nobody wants to because they don’t care. Or when someone dies. Or when the whole world is wrong and you can’t make it right and so you just have to cope in whatever way you can. It bled the pain away, and that was why I did it. Emotional self-anesthetic.

    And to this day, if I can’t write when I feel like that, I feel the urge to cut. But I don’t carry sharp things anymore because I can usually get somewhere to write. This is why I carry my laptop [b]everywhere[/b] – so that I can write when I need to. I haven’t cut in 6 years, but that’s not because the need it satisfied is gone, it’s because I have something else that can effect the bleed-off of pain. The therapists I saw as a teen didn’t help with that; learning that I can bleed off that feeling in writing did.

    And I know I don’t have a formal diagnosis, and I know that everyone is different, so take this with a grain of salt, but: For me, it’s not that I need to communicate what I’m feeling (I still suck at articulating feelings in speech communication and I had a stutter so bad that some days I couldn’t get through a single sentence as a kid so believe me, I know that frustration of “Need to communicate something but can’t articulate it aloud”), it was that I need to deal with what I’m feeling. If I needed to communicate stuff when I bite my hands, I’d do what I always do when I need to communicate something I can’t articulate in speech: I’d write it out and then read what I wrote. Plus, I do my best to not let other people see my SIBs. So it’s not that I’m trying to communicate. I’m not trying to let anyone know how I’m feeling – I’m trying to regulate how I’m feeling. I’m trying to cope. And I don’t think I’m alone in that.

    • I don’t think you’re alone in this either. All that you’ve described is very similar if not identical to what I’ve read from others. Really appreciate your sharing all of this as I think for parents or those who do not do things like this it is very hard to understand.

      • That’s why I wrote it. A lot of people mistakenly think “attention-seeking” or (if you’ll pardon the somewhat homophobic/sexist language, but it’s how people most often express the sentiment to me) “drama queen” when they see self-harm. The vast majority of the time, that couldn’t be further from the truth. I know most people don’t pull their hair when they’re having a bad day at work. And I know most people would be distressed if they saw me doing that, but I have to do it to get myself into a mindset good for focus… so I take myself away where I don’t bug anyone by doing it. Usually that means going to the bathroom.

        People treating or dealing with those who engage in SIBs should think not, “What is this person trying to communicate?” or “What kind of attention is this person seeking?” but rather, “What is this person trying to cope with?”

        Because the vast majority of the time, in my experience speaking to others who engage in SIBs, it is first and foremost a coping mechanism. Sometimes, secondarily, it is an attempt at communication. Extremely rarely is it ever “just” attention-seeking (though I don’t think one can rightly apply such a trivializing adjective to such self-injury – someone self-injuring for attention is surely in just as much pain as I am when I use it to cope, I think).

        • Really, really appreciate your sharing this. I think the distinction between “coping” rather than “communicating” is really critical. I have been under the impression that communicating was a big part of this, but I believe this is not the intent, but more my response to the action. While coping is a much more accurate description of what is going on.

        • Couldn’t agree more I did everything to hide my sib when I could so how does one see that as attention seeking arg so angering

    • Same I cry when frustrated and I can relate with everything you said about cutting too

  13. Hello. I am the parent of a child diagnosed with Smith Magenis syndrome, a genetic, rare disorder with many characteristics that overlap with autism. SMSers regularly engage in self injurious behaviors; my son smashes his forehead on hard edges (often cutting open his scalp and bleeding profusely), has smashed through the sheetrock of walls, and will beat his cheeks with the bones of his wrists until his face swells and his eyes become black and blue. Some kids with SMS have smashed their heads so hard and so frequently that they have dislocated their retinas and gone blind.

    I greatly appreciate the info you are providing here (you said you will post more insights from people who have replied to your inquiries; please do!), because my son does not have the verbal ability to give me insights into his internal experience. Perhaps, as was suggested above, he doesn’t know his experience is different from others’. What I have learned about handling these what I liken to “seizures” I have learned from him, however.

    I learned to praise his efforts to stop himself from hurting himself when I finally listened to him saying to me, “But I did stop, mommy, I did stop!” after the times I chided him not to start;

    I learned to be as non-reactive and emotionally neutral as possible, because even the tiniest emotional tone of tension or upsettedess on my part makes things worse for him ;

    I learned to try to communicate to those working with him to remain calm;

    I learned not to crowd him, because he may become aggressive when resisting becoming crowded in upon; I learned that some agencies and caregivers insist on putting a helmet on him when he is upset, warnings against crowding be damned; I learned that as he and I have both gotten older, it has become more difficult for me to intervene successfully in such a physically challenging situation.

    I learned he regrets hurting himself, since he (and many others with Smith Magenis syndrome) apologize after hurting themselves, and then come in close for a deep pressure hug;

    I learned to see the signs of impending meltdown whenever I could and to do something to change the environment before the “nuclear meltdown ” phase, when there is nothing to do except let it run it’s course ;

    Etc, etc., BUT…

    The reality is he is hurting himself, and with all the press lately about the consequences of recurrent concussions, it is very worrisome.

    I agree with what is said above that much of the professional literature about this topic is not too useful. It just doesn’t ring true or make sense given my experiences with my son. If there are articles/books/websites/ organizations/specialists that you feel are insightful on this topic, please, please recommend them; finding useful information on this topic has been like looking for hen’s teeth. Do you know of any research about what is happening neurochemically/neurobiologically to someone when they are self-injuring?

    Please give those of us outside the experience any more insights you possibly can so we can think of more ways to deal with this. Some of the info provided above has already given me some ideas– I will try to verbalize what might be happening inside his mind and body. I know from past experience that putting his reality into words and saying the words out loud has calmed him, and he sometimes indicates I’ve got it right by deescalating (if I’m off the mark, the meltdown just continues, full force).

    Are there any other suggestions, such as the one given above about deep pressure to the neck (my son’s neck becomes like a steel I- beam mid meltdown) that anyone can suggest to use during the meltdown itself?

    Thank you for taking on this tremendously important topic.

    • Hi Evelyn.

      I have two thoughts on this. The first is that you have worked out that anxiety is a key factor in the behaviour and that ties into experience I have with my own son.

      The second one is that my son also will hit himself when upset or frustrated or anxious (He is Autistic, non-verbal and intellectually disabled) although not to injury beyond red skin sort of level. But he hits himself in the face with his hands pretty hard enough.
      This is a behaviour we could say is in some way associated with negative feelings.

      But my son also likes what people call ‘rough and tumble’. I mean he LOVES it. So when I say rough and tumble I mean things like pretend WWF; me picking him up and throwing him around, and tickling and poking him and punching him (playful little ones) and squeezing him in big bear hugs. And the interesting thing is he will grab my fist and bang it into his head, and rub my knuckles over his head, and so I tap him on the head and push his head back with my fist, and the more I knock him on the head he gets the giggles and laughs and wants more – to a point. In return he will also often headbutt me so its a little playfight sort of thing.
      I am pretty in tune with how much is enough and the right sort of thing and his enjoyment and I find this ‘play’ makes for a happy content and calm little boy. And so in turn the self-hitting behaviour is not evident.
      Sometimes when I am sitting on the computer or doing something like that he will come over, headbutt me gently and start poking his elbows into my ribs. He is telling me what he wants and that its game on 🙂

      So what or why that is I cannot say with much eloquence but that there does seems to be some very strong sensory drive that needs to be fulfilled and so what I think we see in times of distress from the child is them fulfilling that need, as it is soothing in some way.

      So I just wonder if fulfilling this for the child as part of regular ‘play’ might perhaps mean the child does not so often need to do it to himself or with the same level of force and cause the actual physical damage he causes?

      I don’t know if this might be the case for your boy but I thought I’d mention it, and it might be something to look into.

      • So glad you wrote this and added here. My NT son loved this too when he was younger! Exactly as you’ve described. It was very funny reading your description as I could see little “movie clips” in my head of us doing the same with our son. Em, likes something similar, not the WWF kind, but lots of pretending to go to the doctors office and getting a shot (pinch) on her arm, chasing, tickles and pile ups are a few things that she still loves and that we do even now and she’s almost five feet tall now!
        The sensory piece, as you’ve said, is huge and one that just isn’t understood nearly enough.

    • Hi Evelyn,
      Thanks so much for commenting here. I so wish I had some great article to link you to, or brilliant words of advice, but I don’t, beyond what I’ve already written here. I have written, since this post, a couple of follow up pieces to this one –
      https://emmashopebook.com/2013/02/06/different-neurology-different-perception/
      https://emmashopebook.com/2013/02/07/synesthesia/

      I have found little help in the various medical journals I’ve scoured. I do know in my daughter’s case that the more I am able to figure out ways for her communicate whether verbally or more likely through typing I at least have the hope that this might help de-escalate some of the more intense frustrations she feels. But I may be projecting my own neurological needs onto her!
      I do think the sensory piece is a huge unknown and something that just hasn’t been explored nearly enough in relation to these types of physical actions that can lead to actual injury.

  14. Ariane – I was wondering if you would check out this article, which was part of a discussion on linkedin – http://www.examiner.com/article/self-injurious-behavior-sib-autism#sthash%2ETEUxife5%2Edpuf.

    I don’t want to bias your response so I’ll save my comments. I appreciate you’re taking time to share your thougths.

    I’m trying to signal boost autistic perspectives and don’t have personal experience with this. I found your post to be really insightful, and if you have any other links to autistic commentary on SIB’s I greatly appreciate your help in finding them.
    Thanks!

    • Hi Patricia, I didn’t see anything particularly new or even interesting in the link you sent… This is all pretty standard stuff and approaches it from a behaviorist’s point of view. It does mention that an inability to communicate or adequately express oneself is a contributing factor, but honestly that seems like such a “duh” statement… I’m not sure what else I can say about this.

  15. Thanks, I figured as much. I directed them to this post, as it seems these studies never ask people who actually experience it. Sigh.

  16. It’s really, really tough to watch someone you love hurt themselves and it goes against every instinct we have to do nothing. The problem is that often the things that are then done are worse than what the person was doing to themselves. There is no easy answer to this, but finding methods by which the person feels they have control over the situation is key. Of course if the person has no way to communicate, even afterward when they are calm all of this gets even more problematic.

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  18. I went to a rtc because my self harm became so bad and my therapist didn’t understand my autism they told me why I did certain things and constantly dismissed my feelings they ” knew” everything who questions the expert. When I was sad they held me down so I wouldn’t hurt myself but if you have sensory issues and your upset getting touched is the worst most painful thing and yet they were suprised when they grabbed me and I’d scream and kick and cry untill I had no strength left to fight untill they shoved a pill in my mouth to knock me out and then id wake up hours later so ashamed. My therapist the person who for two years of my life dictated my every move whether it was me being on communication block with all other students ( which is so dumb because they told me to share my emotions but then told me I couldn’t speak to anyone) or if it was having to sit in a mattress and do nothing for days to keep me safe either way they didn’t care about me who I was and isn’t any wonder that I don’t trust “experts” I believe lots of other autistic people can relate to trauma that others have so wrongly inflicted on us when we were already in the darkest of despair. I love you Emma I feel you and to all other kids, adults etc with autism verbal or non verbal whatever that means I feel your pain and I’m making it my life’s mission to change the way people see us 🙂 hugs all
    -Kristin

    • I might add we feel pain differently and I believe a lot of my sib was due to sensory stuff as well as not being able to express emotions the treatment I had traumatized me further for the most part only time love and understanding worked I still pick the skin iff my fingers u don’t do it to hurt I do it because I’m constantly anxious about something and it’s sub conscious

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  21. Head banging can also indicate the existence of a serious problem like chronic migraines or a brain tumor.

  22. I have felt the need and have burned, cut and hurt myself. My 3 year old is the same as me. The only thing I can say is that hitting me, I’ve asked people actually to punch me in the back between my shoulder blades. With my daughter, I notice when she’s highly stressed, throwing a tantrum bc she doesn’t know what’s going on with her. So I ask if I can rub her back, she usually says no at first but then she knows how much it makes her feel better and she’ll stop. Hope that helps, it helps us most of the time. Best of luck.

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