I’ve been working on a post about self-injurious behaviors for a few days now, but I realized this morning I need some feedback from all of you before I proceed. If you aren’t comfortable commenting here, please write me at emmashopeblog@gmail.com. Everything anyone tells me will remain confidential, unless you specifically tell me I may quote you. If you are comfortable with my quoting you, be sure to tell me!
Have you or anyone you know engaged in self-injurious behaviors?
Can you describe the behavior?
What was done?
Did it help?
If not, did it make it worse?
Was there anything that did help?
If so, what?
If you have witnessed someone who self injured did anyone speak to you about how you felt being a witness? If so, was it helpful? If not, do you think it would have been?
All comments on this topic are welcome, even if they do not answer any of these questions.
Thanks so much and have a great weekend everyone!
Emma’s Self Portrait – 2013
Emma's Hope Book 
I’ve written about self-injurious behaviors on my blog, as you know, and that’s only a small fraction of the stuff I’ve written about it overall. I do better answering questions than writing unprompted, though, so I want to answer yours.
I’m only going to answer for myself and not for behaviors I’ve witnessed in others, because I don’t want to speak for anyone else (although I did do a brief summary listing of people I’ve encountered who’ve done it on my blog).
My default go-to SIB is biting. Sometimes I also run into walls, roll down stairs, hit myself with flexible sticks, or stab or cut my skin with knives. It depends on my mood and what I’m going for, as well as the setting and surroundings.
What’s been done: beginning in early childhood, psychotherapy to “help” me to “realize” the (nonexistent) neurosis/depression that was “causing” the behavior. Physical restraints. Antidepressant drugs. Antipsychotic drugs.
Did it help: Absolutely not.
Did it make it worse: The therapy made it much worse, by indoctrinating me with the belief that self-injury=depression, I was successfully transformed from a happy, emotionally healthy, autistic self-injurer to a self-conscious, depressed autistic self-injurer.
Physical restraints and one particular antidepressant stopped the behavior, but at the expense of making me utterly miserable. Other antidepressants and antipsychotics had no effect on the behavior (which is understandable, really, since the behavior was not caused by either depression or psychosis).
Was there anything that did help: Yes, leaving me alone to do what I need to do, believing me when I say that I’m not depressed, and generally treating me as if I know what I’m doing. Sometimes deep pressure in various forms also reduces the impulse. Sometimes it doesn’t.
Being a witness: I’m not sure I understand the question. I’ve witnessed other people’s SIBs, and talked to them about it… not really about how I felt as a witness though.
Does this help? If not, I’m happy to answer follow-ups.
Hey can you post here the link to that piece you wrote on your blog about self injurious behavior? I wanted to reread but couldn’t find it.
The witness question is for parents, educators, therapists etc. I am curious if anyone ever speaks to them about their feelings of guilt, responsibility, anger, annoyance, fear when they see their child/client/student etc engage in SIBs and if that has any affect on how they then behave (shouting, scolding, restraining) and the things they then say or do to the person who is engaging in SIBs. I’m trying to gain a better understanding about what goes on for the person who implements these “treatments” and why they aren’t questioning some of the more invasive and cruel so called therapies out there.
I have three; they’re all under https://speakingon.wordpress.com/tag/sanguinary-files/
I have different ways of responding to it in my children. I’m reluctant to discuss that particular issue in public, I’m afraid. Too many people classify refusal to “treat” the problem in children as “medical neglect.”
This is EXACTLY why I haven’t posted my piece yet… whew, you took the words right out of my mouth…
Thank you for the links.
This comment doesn’t directly address the questions above.but it may be a starting place, i.e. our attitudes towards this kind of behavior. It is important to think about the language that is often used to talk about this kind of behavior, starting with the term “self-injurious” itself which historically has suggested that it comes from an “abnormal” or “disturbed’ place within the person. We now know that there are a number of different reasons that could cause people to hurt themselves that relate to sensory needs, reactions to things in the environments, inability to communicate, etc. So I would like to hear some discussion about how we talk about this. It may be that we still use the same language but re-frame how we use it.
Ahh.. yes.. I hadn’t considered this. It’s very true, judgment is embedded in the wording before anyone has even said or done anything. Do you mind giving me feed back on some of what I’ve written (this is part of a much larger draft)
“There are a number of things I disagree with given the current conversation regarding SIBs. The current “therapies” being used under the guise of “helping” those who engage in such behavior is first and most upsetting. As an example of what exactly I’m talking about please read the following quote from ScienceDirect: ”Two studies are reported which indicate how quickly and effectively chronic self-injurious behavior was controlled in a 9-yr-old blind psychotic boy. In the first study, the self-injurious responses were punished by contingent withdrawal of human physical contact. In the second study, response-contingent electric shock was employed.”
Electric shock? Withdrawal of human contact? This is “therapy”? I know these are perhaps extreme examples, but there are many other methods commonly used, far less extreme, but never-the-less still upsetting. Things like restraining the person, putting them in garments that restrain them, depriving them of favorite activities and other punishments. So here’s my question – Are we really concerned with the well being of the self injuring person or are we uncomfortable with the behavior they’re displaying and want, by any means necessary, to make them stop? Are we helping people live their lives with respect, grace and understanding or do we really believe anyone who resorts to such behavior is basically an animal? What are our prejudices when it comes to someone who hurts themselves? Are we filled with contempt? Do we see them as lesser human beings? Do we believe that “helping” them means we remove their ability to hurt themselves by taking on that role ourselves? How is our injuring someone okay, but when they do it to themselves it is not? Does anyone see the disconnect here? How is any of this actually helping the person in the long run.”
I’ve heard people differentiate between “self-harm”, an emotional condition, and “self-injury/self-injurious behaviors,” a neutral description of a physical act. But I’ve also had emotional self-injurers attack me and accuse me of overall horribleness for daring to use the term “self-injury” to describe what do, which they swear should refer only to their thing and I’m somehow co-opting it.
Wait, I don’t understand this. Can you explain more what you’re saying. They’ve attacked you for self describing what you do as self injury? Is there a different to what they are doing?
Yes, they attacked for describing what I do as self-injury. I don’t really understand it either. Yes, it’s different from what they were doing in that theirs was emotionally motivated.
I don’t understand why someone would attack you for this, makes no sense.
I’m going to reply to this and to your post here.
There is a difference between self-injury and self-injury behaviour, I use both, SIB is for me related to autism and sensory processing, it’s biting, hitting myself, etc, SI is cutting, overdoses of meds, etc. The difference is the motivation and the state I am at the moment but it is very different for me and for what I know of others.
When I have sensory problems, too much stimulation or painful stimulation can cause SIB, problems in communicating, speaking, writing and having people forcing me to speak when I can’t also causes SIB. When I use SIB the feeling is different, there is a lack of words related to it, I feel that everything is too much or too painful and I just want to scream, the only thing that stops me from it is when I shutdown and inertia, I just stop so I no longer have the ability to hurt myself.
SI is related to emotional triggers, for me that can be related to trauma, it could be caused by dissociation that is normally present, by conflict (also a trigger for trauma), when my feelings are too strong and I can’t cope, in the end SI is an addiction and a bad but useful coping mechanism. Many people have Eating Disorders together with SI and use both in similar ways to cope. I could be using it because I am suffering with strong unbearable feelings or because I can’t feel anything and nothing is real (depersonalization) that is different from when I shutdown because of sensory/communication problems.
I never hurt myself in front of others because of terrible reactions by different people and threats by mental health professionals when others noticed my behaviours. I was also coerced into taking psychiatric medications that made it worse. Shame was used and also made it worse.
What helps for me is not to judge, never use guilt or shame, remove sensory stimulation that could be harmful, don’t force communication, a safe place, freedom, validation that the causes for my behaviours are real and is not just irrational or being “too sensitive”, silence, soothing sensory stimulation like certain toys or blankets, that the other person stay calm and never speak louder or more agressive and be able to be suportive and mindful, not easy considering someone you care about is hurting themselves. Having something that could be used to avoid injury is good too, hitting myself with something soft or biting something else can help sometimes.
I should also mention that what helps me as someone with hypersensitive senses might not help someone with hyposensitivity since they might need more stimulation and not less.
All of that is just my opinion and experience and others can feel different, in general that is also how many see the difference between SI and SIB, I have read books that explain in a way similar to this and from what I understand from what others told me.
If you want you can quote anything if there is anything useful.
Thanks so much for sharing this. I really appreciate it and feel I’m getting a better understanding of the difference between what I’ve done in the past SI and what my daughter does, SIB.
Maybe we change the language by getting more specific about the function:
“Physical self-modulation of sensory distress”?
physical – because it often is
self-modulation – because it is
sensory distress – may be up to debate, not sure if this is always due to sensory distress or other (non-sensory) factors.
Self “injury” is the interpreted “outcome” by others however from the standpoint of the “self” this is a method of self modulation.
Hmmm… this is good. Yes, the injury is the outcome, but compared to what? That changes everything…
I SIB now (age 45) but not as bad as I did as a child. As a child, I would pick up heavy things and smack myself with them, hit my head against things, and cut and stab msyelf with things.
I am pretty convinced that I took up smoking (harsh unfiltered cigarettes) as a sublimation of SIB because the number one thing I miss about cigarettes is the way they would “bite” my lungs.
Now I pick and scratch and sometimes slap myself when I’m really stressed. Also, I still sometimes headbang (current boyfriend of 8 months’ duration has seen it once. Ex of 15 years saw it several times.)
Most of my life, I knew I needed to hide SIB. That just made it worse.
The best person ever in responding to my SIB is my current boyfriend. What he does is just observe silently. I asked him later what was going on and he said that he wanted to be supportive of me, not the SIB, but figured if I was banging my head against the wall or slapping myself in the face I was obviously pretty stressed out and he figured (correctly!) that freaking out or shouting about it would just stress me out even more.
So his approach is just to say nothing and wait for me to finish. He knows I don’t want to injure myself and that anything that extreme that I do must have a pretty darned good reason behind it so he just shows that he will not go away and he will not judge me or shout at me and as a result I find I have much less urge toward SIB. Even when he is not around, I can think about him and it helps me stay more calm because he is such a calm person and the quiet acceptance he has shown has sort of “rubbed off” on me.
This is what I’ve been doing with Emma. Just being there and present and saying nothing. This is what I’d written early this morning…
“I try to say nothing. I try to remain near her. I try to silently witness her actions, without fixing it, without making it all about the teeth marks on her hand or arm, I try and it’s really, really hard. When Emma scripts, “NO! You cannot bite!” I respond by saying, “Well yes you can, Em. You just did. Look there are your teeth marks.” But mostly I try to hear her without either of us saying a word. When she is calmer I might do breath calming exercises or sensory exercises…”
So to those who object to this idea, to those who say but if I stand by and do nothing they might crack their skull open, or whatever… what can one say to that? I think this goes against everything our society believes on a fundamental level. Maybe I need to discuss that as well….
Ariane, I don’t have the spoons to answer right now, but I wanted to remind you of an email conversation you and I had a very long time ago, maybe 8 or 9 months back, maybe more. Go look it up, I think I addressed a lot of your current questions there…
Just found it! Thanks for the reminder!!!
The dilemna I face as a SPED bus driver is, how far is too far? A few months ago one of my students (nonverbal, autism, wearing head/face protection) would hit herself in the face so hard that we were worried about detached retinas, (which did happen in the end) perforated eardrums and a broken nose. My sad solution was to pull my bus to the side of the road when she pulled her helmet off and wrap my arms in a loose/no contact circle around her head. It wasn’t a restraint but a shield and she would continue to hit my arms and hands for a minute before it was over. Biting and scratching is one thing but, I couldn’t bring myself to let her injure herself to that extent…
Jesse, I am so grateful you wrote this, because though my daughter does not harm herself like this, I know there are those who do. I don’t have any answers, I wish I did.
Thank YOU, Ariane. I’ve followed your blog for quite a while now and it’s helped me understand my students better. I’m committed to making a change of both perception and understanding in my department and, I need all the help I can get. If anyone here is willing to write or send links about this subject.. Please do. I truly need information and examples for my presentation. My bus terminal manager is constantly challenging me to find more topics, more conflicts and more resolutions to the every day challenges we face. And yes, I remember when Emma tried to tell her new bus driver that she was taken to the wrong school. WAY TO GO, MISS EMMA!
We are slowly, slowly coming around and when the proper changes are in place, when the compassion we invoke can be read in every smile and peal of laughter when our kids step off our bus… Well, that will be the start I’m looking for.
This makes me so happy to read! When I finish the piece I’m working on please feel free to give it to anyone who may find it helpful in implementing change.
I do engage in sib and have on and off for many years. My daughter does a little also. I tug on my hair, hit my head, bite my fingers or arm, hit myself, pick at my skin, bite the skin inside my lip and cheek until I get sores, and a long time ago I cut. My daughter picks at her skin.
We both take anti-anxiety medication but it only helps so much. The sib for both of us is due to anxiety. People don’t usually notice when I do it because I try to hide or if I can’t then I do it in such a way that it goes unnoticed like biting the skin on my finger between the hand and the knuckle. It just looks like I am sucking on my finger sideways. When I was cutting in the past, my husband threatened to have me committed. That was before our diagnoses and we were just diagnosed with depression back then.
When things get really bad I take my other medication but I mainly have to wait until the bad anxiety passes.
Medication doesn’t make it any worse and since no one notices they can’t tell me off. When my daughter picks at the skin around her nails, sometimes I will tell her that she shouldn’t because it can get infected but I don’t say anything for the most part. I tell her I do it too and she should hold a fidget. She does try to do that but it doesn’t always work.
There is nothing that completely works for either of us.
I don’t remember ever having witnessed anyone else who self injured.
Hi Mandy,
Thank you for sharing this. I really appreciate it.
I will go into this at length if you want to PM me Ariane, but I’m not even comfortable enough to fully disclose on my own blog yet, so I’m not going to do it in the comments here. I did talk a little bit about it in general terms on my “Not That Autistic” post, though.
Michael I’m going over to twitter now. Will PM you there.
For many years I’ve picked and torn up the skin on my arms and shoulders. I’ve got it down to a bare minimum now. Playing guitar is the only thing that’s really helped long-term in a drastic way.
Do you mind if I ask a couple follow up questions? I don’t want to presume by asking outright without your permission.
Sure–will you e-mail me at my blog’s contact e-mail?
Yes! Am doing now.
I’ve picked at zits, is that considered self-injury?
Other than that no if you restrict it to physical. But I have beat myself up mentally for something that I thought was something stupid I did or said. I have been like that was so dumb of me to say/do. I also beat myself up for things that are out of my control, being like why don’t people like me. Why have I not got more stage-time it must be because I am a terrible comedian. Why don’t I have a girlfriend why did I say that wrong thing.
Other than that I never self-injure.
💕
not sure what you wrote, not sure if that is just a little box, or what it says.
It was supposed to be two hearts! 🙂
I’m loving these comments! A while back you asked me a bit about this subject, and I didn’t articulate my thoughts very well. I no longer (although one can never say it will never happen again) head band, etc, but I get these little gasps instead, like the tiniest of seizures. I can be quite happy, but a certain thought or action can trigger it, but, fortunately not the injuring I would take in childhood. But that gasp! Ugh! Today, Doc called me “Turtle Dove”, just as I was gasping. Something about the sound, not the meaning, of that phrase make me relax and breathe correctly. So funny! I may have a new trick! Every time I have felt that tension of a gasp today, I smiled and said, “Turtle Dove”, and everything relaxed. Go figure:D
The great part is that I don’t think anyone would find it the least be out of character for me to smile at any time and say…”Turtle Dove”.
Come on, everybody! Say it with feeling! Tur-Tle-Dovvvv! 🐢🐦❤
Tur-Tle-Dovvvv!! 💕
I like Chou Chou’s sentiment a lot – but it’s very insightful to hear everyone else’s as well. Thanks for being so open.
Our son tends to pick at mosquito bites, and now the tips of his fingers (until they bleed). I’m not sure of how to frame these behaviors – but since his dad had really bad, scarring acne, we’ve been very concerned with this – should he develop the same issue. I just want to cry when I see his little fingers all bloodied up….
When I was a teenager, though, I was very wound up, very worried all the time, and did try once to cut myself – I’ve never told anyone this – but I couldn’t go through with it. Not long after, I joined the track team – and while my parents were telling me that my grades couldn’t go any lower (or they’d make me quit) – imagine everyone’s surprise when running took my jangled neurons and organized them – I was on the honor roll for the remainder of high school. Nowadays, I run to stay “organized” – to manage anxiety, to deal with some of the repetetive thoughts that happen – and when I say run, I mean I do 6-12 miles at a go. One might see that as a differently framed self-injury behavior – because I do run through pain and minor injuries – and I enjoy feeling sore after a workout – it’s just a socially acceptable behavior. But I hadn’t thought about it that way until reading all of this!
Right. Running 6-12 miles makes you healthy and “athletic”!
I’ve done a full marathon as well – and have had a couple people try to convince me that running has no actual benefit – I think that even if science bore that out, I might still make like a gazelle…..
This is such an interesting topic. I really sympathise for parents and people who witness a loved one hurting themselves because it must be very distressing to watch. I knew a child who pulled her hair out until part of her head was bald and it was so sad to see her distress, but she was a neurotypical child coping with the death of a parent, so there was deep distress there.
I have always picked my skin since I was a little kid. I like the sharp, brilliant pain of it. As an adult I hate having to wear face make-up to disguise the extent of what I do and I wear my hair long to afford some measure of disguise by that. I know that my picking is about releasing anxiety but until a couple of years ago I did not know that other people did this..
I have also taken up other activities that gave me pain-which-is-pleasure, such as running and body-building. When I exercise I always to it to the point of pain. (Incidentally I have no interest in or empathy for pain as part of sexual activity. I find that as bewildering as someone might find my autistic need for pain)
I also have a close relationship to types of pain, so sharp, white pain is good, dull brown pain is bad and to be avoided, just like ‘normal.’ Being with people means that I unconsciously tense my body, so I often suffer a lot of muscle pain that is wearing and debilitating and that is bad too. It is the self chosen, self-inflicted, specific pain that is delightful and necessary.
In reading this post I am reminded of the years I spent working out with weights and I am thinking that I might turn to that again because the skin picking is becoming an issue at the moment. I am doing a lot of business which means lots of people=lots of picking. But I think it is not a good look for a business woman!
In conclusion, I am sorry for the witnesses distress, but remember that your autistic might be enjoying what to you is dreadful and also perhaps encourage your autistic to try other types of less damaging but still satisfactorily pleasing physical pain through some form of exercise as suggested by erebusetnox.
Thanks so much for sharing this. Really appreciate it.
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post thanks once again.