Self Injurious Behaviour (SIBs) and Autism | AIDE Canada

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Paige Layle
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Related: autism, autism diagnosis, Paige layle, paigelayle, paigelayle tiktok, tiktok videos, autistic, autistiktok, autistok, autism spectrum disorder, Aspergers, Aspergers syndrome, autism in girls, dsm, autistic kid, autism mom, autism family, autism speaks, autism awareness, autism acceptance, behaviour, behaviour disorders, behaviour problems, self injurious behaviour

[@micheletaskey5796]

"This body feels like it's no longer safe" and emotions being too big for the body. feels so powerful as someone who teaches non-speaking kids

[@hieithefox]

Seriously sometimes I wish as an autistic adult I could just go into the home of some of the autistic kids I have met and watch and relay what the kid can’t

[@maiarustad5062]

I daydream about that all the time, even though I don't want to be a parent.

[@BlackCover95]

Like a translator?

[@Melissa.Garrett]

@@BlackCover95That’s a very good analogy!

[@heedmydemands]

Yes as a parent I wish that I could have that help even tho it does sound quite over the top. It can b so difficult to understand eachother. There r a great many frustrating moments of asking a question and not getting an answer back, but I do that too, sometimes I just can't answer right then and u will have to wait

[@jessaphillips2846]

I wonder if that could be a good business opportunity or something to work with an advocacy organization to be hired to come over and sit with an autistic child’s family for a couple of days to watch them and help the parents understand what they’re needing when they act in a certain way? Or maybe a video series could be made? Although I know that it would have to be pretty generalized and broad because each autistic child is different and may act differently when trying to express the same thing as another child. Overall though, there are definitely opportunities here to help.

[@courtneygriewahn2066]

I have a theory that SIBs really shines through when the thing that is causing frustration is a thing that's recurring. A frustration that keeps popping up so it leaves the person feeling completely defeated and at a loss because of the recurring pattern and so they have to physically let their emotions out because nothing else is working so far. I will display SIBs sometimes and it's usually because my frustration was built up over time with the same similar situations.

[@jimwilliams3816]

That is 1000% correct, at least for me. Thank you!

[@lulumoon6942]

Great thoughts

[@민지야-l3p]

I display it a LOT and I agree. It's usually that or just feeling so utterly helpless and hopeless 😢 It's actually so dangerous when I think about it. I know one time I had to hold back in public and exploded at my front door melting down and SIBs even at the door, I felt such utter despair as I had to live through so much ableism and dehumanisation of a 4 year old autistic child at my work experience and the verbal abuse she suffered because "she doesn't understand" (she did, we had full on conversations even though she's minimally verbal but I was told I was lying) and ugh, this teacher was TRAINED IN SPECIAL NEEDS CHILDREN! SHE COULD BE EITHER A REGULAR TEACHER OR SPECIAL NEEDS TEACHER??? disgusting! And she was praised by the other work experience girls and I felt hopeless about the future and my future and future of others... Why so dangerous? Because I have suicidal ideation tendencies from also having depression too that is usually triggered by meltdowns and that meltdown? I did feel the only way out was OUT but I wasn't alone and my boyfriend calmed me down. SCARY!

[@nate2838]

​@@민지야-l3p Your story touches on an extremely important point with SIBS. Others understanding enough of whats going on to be able to offer the comfort needed to come down from such intense frustration that it HAS to have an outlet. Its like a pressure cooker. Pressure cookers built pressure from heat, and nowhere for the expanding pressure to go. In order to relieve the pressure one of two things has to happen, the pressure needs to escape, or the heat needs to be brought down. What really helps me the most, is cuddling with someone safe. It allows me to just let go. It helps me regulate. I've heard of others responding well to a firm hug. And with everything, of course, it all depends on the individual. I don't know how common it is, however for me, touch is a form of communication that bypasses the conscious brain. The same goes for peoples presence, and I don't think many people realize the value of maintaining a calm presence that is palpable. There are times there isn't even a memory of what "calm" is, so how can I return to a state I don't even remember? So there being someone who isn't just calm, but resonating calm, gives my emotions a path to follow.

[@beckee6282]

So true. When I’m at my worst, in terms of depression and sib, it’s either because something sudden and traumatic happened or because I’m in a stressful situation I have no control of. If I feel safe, I can go months or even years without these sib

[@stephenie44]

You mentioned that a lot of the kids with the worst SIB have rough parents, and while I’m sure that’s not ALWAYS the case, I really want to encourage all parents with kids with SIBs to go see therapist for their own mental health, not because it’s “your fault” or “you’re what’s wrong,” but because the more we take care of our emotional needs, the better equipped we are to handle someone else’s, especially when they’re intense or scary. When a parent acts scared or frustrated or angry - all normal reactions to SIBs, it is scary for the child. It makes something that is already hard even worse. And knowing how to stay calm while someone is in crisis, WITHOUT shutting down/ignoring/neglecting them is HARD. It is not a natural skill, it is something you have to learn and work on, and it can be so helpful.

[@stephenie44]

I see the lasting effects of not having had that in my partner. Her mom was reactive, so everytime my partner struggled, another wave of fear or shame or panic would fall on top of them, because now she is not only dealing with her issues, but also her mom’s uncomforting or very distressing response. It adds so much pressure to be perfect, or to try to be as long as possible, because you know once you can’t handle it anymore, things are going to go horribly.

[@jimwilliams3816]

@stephenieolson8535. Yeah, that’s my story too, and because I have the same problem, I’ve passed it the CPTSD along to my partner. It’s hard, because one of the physiological things that can happen with moms is that a person can develop a predisposition to high levels of stress hormones through prenatal exposure to their mother’s high levels. It’s a way in which heritable traits can pass by non-genetic means, and so a mother who is prone to dysregulation can have a child who is inherently vulnerable to disharmony. I’m sure this is what happened with me, and it meant that the pressure would have also been on my mother to be perfect, because I took everything badly. I have to call out society on this one too: the lead poster on this thread put things very fairly, but “blame the mother” remains immensely popular, and makes things so much worse. I was little in the days of the “refrigerator mother” theory of autism, and I’ve been dismayed to see that the topic of trauma, of late, focuses much of the time on the same basic concept: if you suggest you have CPTSD, it gets assumed that this means you were mistreated as a young child. I just encountered this exact problem today with a new med provided that I otherwise liked. It’s well recognized in neurodivergent circles that CPTSD does not strictly come from parental abuse, or abuse before 5, but even well meaning people assume that. I don’t think I ever had SIB meltdowns, or much by way of meltdowns at all, as a child. I have just figured out the “need to be perfect” loop, and that goes way back. But the other biggest factor is difficulty making myself understood, and the frustration that comes from that, and that has mostly to do with social difficulties I’ve had over decades of adulthood. My mother (who may have been autistic) was actually one who largely understood me, and related to me in ways that others have not. She explained the whys, and let me make my own decisions. I’ve become aware of just how much more trauma I would have had if I had been raised by parents who played the “we know what’s best for you, do as we tell you” game. Sorry, today is a venting day.

[@stephenie44]

@@jimwilliams3816 thank you for sharing. I have cPTSD from adulthood experiences. I think certain behavior tendencies - like finding it easier to ignore myself when I’m the company of other people - left me more vulnerable to developing cPTSD when a chronically high stress issue befell me and my partner a couple years ago. But my parents were nearly perfectly suited for me, and I had a really lovely childhood, aside from the moderate social isolation that came with being undiagnosed autistic.

[@ieatlotsofshit]

I 100% agree with what you said!!!

[@nate2838]

Well said. It has also been my experience, both as one who is overwhelmed, and one who is assisting someone who is overwhelmed, that a calm presence can help the other person to calm down. Its like it gives them an example of what calm is and provides an anchor they can use to stabilize.

[@lappalulalula]

My love scratches and bites his arms when someone talks to him. He bangs his head against the wall when he's ashamed. He cries and screams and it breaks my heart. When he was little he rarely cried but when he did I could feel his pain like ice in my veins. He needs contact with me like he's thirsty all the time and separation is a major cause of stress even if it's for a couple of days. I watched him grow, I raised him with his father because his "mother" hated him and never held him once, I took care of him but I was a child myself and his father abused and beated me. The fact that he existed and needed me to protect him saved my life. He grew up in an unhealthy enviroment. When I'm overwhelmed I usually stay in bed and don't wanna go out, I look for certain types of physical pain that help me blow up that bag of plastic where I keep all those feelings I can't process. Then I feel them all at once and it's a mess. I can't process them because they are too much so I tell myself that I MUST, I have to MANAGE to ignore and suppress what doesn't seem to have any importance at all since no one, not even me aknowleges and identifies my feeling and emotions in a given situation. He says I'm his nest, his safe space cause when I'm with him he feels safe and the pain goes away. Yesterday he called me cause he was out of town for work, a colleague talked to him again even if they've been warned that he has limitations at work and cannot have a face to face conversation. His social anxiety is hard to deal with and not being free or able to communicate always results in shame, guilt and frustration. When he's overwhelmed I always find a way to stop him from hurting himself. After that he falls asleep for at least 3 hours. We deal with it together and what's special is that we don't need to say a word, I struggle with intimacy but I've never had one problem with him. He becomes aggressive only if someone tries to hurt me and he's spiteful, I think I tought him that. People think he's weird so they victimize him cause he doesn't fight back even if he could. He attracts people because of his looks, but he feels violated when they look at him, he walks away or turns away with disgust and they feel rejected so they tease him. He just wants to be left alone. He's my favourite person, if anyone else could see beyond their stupid normality filter! They say we are intolerant to change, uncertainty and a lot of things, ok. But what bothers me is that there's no tolerance for complicated realities, a feral fear of the ghosts they've created. Who wants control here? Over reality, over other people. If they knew what we's been through they'd see the true beauty of what we are. What they taught me as a child was that being blessed with brains and beauty comes with a lot of responsability. This is so wrong. I wish I could be always by his side, holding him when he needs me. He's my safe place too, I have insomnia cause I'm hyper vigilant, everything keeps me awake noises and lights, smells and things touching me. But when he's with me I sleep like a baby and nothing bothers us. The social context in which I live is too much and at the same time too little for me. I'm stuck, trapped underwater and I need to catch my breath cause my lungs burn. When I finally emerge I'm exhausted and it's like fainting after a prolonged apnea. I'm tired of masking. It's heartwarming that we are not alone in this, thank you Paige and all you guys out there

[@IzzyB-iq7fp]

I love you

[@thomblybelearning9346]

I hope we're differently tolerant to change & uncertainty. Your writing affirms that hope. Thank you for sharing!

[@amandaking9527]

This is very beautifully written. It sounds like you are very supportive of each other. I hope you both can work toward a better relationship with yourself and your bodies when you’re apart❤ I wish I had someone I felt that safe with

[@lappalulalula]

@@amandaking9527 thank you ❤️ We are alive only cause we've been there for each other. I'm lucky to have him. No matter what it takes. Our love, what we have, is the only positive thing that has come out of this mess to which we were subjected. Our bodies don't make sense when we're apart cause they feel disconnected from their main source of power that shields us from the outside world. I'm pretty sure my Gran, nonna Maria, was autistic. Once she told me she had to clean deeper and deeper even if she had to scratch that table cause there was so much dirt around her. She liked the noise of the vacuum cleaner but only when she was vacuuming, she moved it rhythmically. I think she needed to cover the sound of the screams coming from inside of her tortured mind. She didn't belong to the life she had, constantly told that she was too cold to be a mother of 3, too smart to be a woman, too perfectionist, too aloof and too skinny to be Neapolitan, too fragile to be human. She had no control over her wishes, she had to work and take care of 3 kids by herself cause her husband was a violent alcoholic. She was alone. But she could keep the dirt and the dust from accumulating, that thing she could control. I cannot change what they did to me, all that pain and those humiliations, but I can hurt myself as much. I can remove pieces of my skin if I want to because people allow themselves take so many little pieces of me every day. I think that's why some of us do that. My baby couldn't tell his father he wanted him to stop hurting me, he felt powerless so he hurt himself to create that noise inside that comforted him and he felt closer to me. We have slightly different ways to dissociate from or to cope with trauma. Stimming, self harm and self injury I'm not good at naming things I feel but I think these are all ways to be aware of ourselves beyond the pain. On a planet where the gravity is too strong you have all that pressure, it's like we lived on Jupiter and we need to play with rocks to somehow distract ourselves from the fact that we are being crushed. We focus on ourselves.

[@CheekieCharlie]

So what the context here? Is this your little brother? Or a boyfriend? Sorry, I just love it and want it to make more sense in my head

[@DavidLindes]

Thank you for pointing out the distinction between self injurious behavior and self harm. As someone who's engaged in both over time, I hadn't had a framework to separate the two, and yet, felt like not all the things were the same... now, I have a framework for making a distinction, and I appreciate having that. Thank you, paige!

[@amandaking9527]

I’m interested to hear more about how you draw that distinction. I think I’ve engaged in both as well but I think I’m having a hard time distinguishing them. Like I’ve done things with the intention of causing myself pain because of the sensation, but not because I want to harm myself. But those behaviors might be the same ones I engage in when I DO want to harm myself as a punishment or whatnot (speaking mostly about my behaviors in adolescence). Idk maybe I answered my own question😂 but I’m curious about your perspective if you’re willing to share

[@DavidLindes]

@@amandaking9527 Well, I won't go deep into details, but suffice it to say that I've engaged in the past in "cutting" behaviors -- deliberate, methodical, intentional -- which, in the context of this distinction, I would consider to be "self harm", and, at other times, I've done things in reactions to a difficult moment like smacking my head with my hands, or even against something, without pre-meditation, just doing it in the moment because of intense stress. So, I'd count that as self-injurious behavior. Is that helpful? That's probably not the only kind of difference there could be, but it's hopefully illustrative of where I'm drawing this new line in my mind.

[@amandaking9527]

@@DavidLindes Yeah definitely helpful. I think I have some overlap because I'm more internalized with my presentation, so I'll have to keep thinking about that

[@DavidLindes]

@@amandaking9527 Glad to hear it was helpful. And I wish you many useful insights as you reflect, and a future of reduced harm!

[@jimwilliams3816]

That’s how I see it too. Methodical vs basically involuntary. First might be calming, and the second is a desperate attempt to reduce distress. It is worth noting that displaced aggression can actually reduce stress hormones in the body - in a baboon tribe, this can be where an high ranking male pummels a lower ranking one, and then the lower ranked individual pummels someone even lower ranked to make himself feel better. So sadly, pummeling oneself probably does release tension in a meltdown. It feels that way. Since I am extremely predisposed against harming another creature, animal or human, I suspect that’s one reason I have picked myself at times. I am also, in that moment, extremely unhappy with the state of my head, that factors in too. I suspect these may be things that influence other autistic people at times.

[@jshizzle0]

Thank you for mentioning autistic elders, while im only 30- getting older is one of my biggest fears

[@aem99]

I am a psychologist and I work on an adolescent inpatient ward. 90% of the young people are autistic, and many of them injure themselves head banging. It’s heartbreaking and always conceptualised from a “self harm” point of view. Which is relevant, but the autism of it all is always neglected. So much more research and autistic opinions needed in this area!!

[@isabellefaguy7351]

Being one autistic person who has done head banging I can tell you it was not "self harm". It was a need to get a very specific stimulation in a very specific spot that was kind of hurting because of cognitive overload. Other autistic people may have different reasons.

[@Catlily5]

Having been on adolescent units I am skeptical that 90% of kids there are autistic. I banged my head some but the staff said I would get brain damage so I stopped. It was self harm in my case. Most of the other kids did not bang their heads. Maybe where you live there are more autistic people? But 90% still seems too high. Unless you are in Silicon Valley.

[@aem99]

@@Catlily5I am talking about the ward I work on in the UK, and that is the correct information of the proportion that are diagnosed with autism. So no need to be skeptical, it is true.

[@Catlily5]

@@aem99 Why do you have so many autistic teens there compared to other places?

[@ericacosat9557]

@@isabellefaguy7351yes

[@rhondawest6838]

I'm a chronic skin picker and the older I get, the worse the scars are. Things don't heal like they used to. And yet, I can't stop. Sucks

[@milamila1123]

Same. I noticed myself become more irritable the times I forced myself to stop.

[@SomeoneSomewhere42069]

0:07 I LOVE THE WAY THIS SOUNDS "ed-d-d-dit et" It has such a good mouthfeel too

[@barclaycork-ys5wz]

Man, this hit a spot for me. I have engaged in SIB since before i could walk, and in many forms. The most poignant is beating myself in the head. The shame afterwards is always so much worse than the event or the injuries. Frustration is usually the trigger. It made my time in jail interesting. Thankyou for this video i usually feel so alone in this realm of my experience.

[@Abishhhhh]

i have done the same, literally given myself black eyes. The scariest part is these acts can lead to things like dementia later in life, which sounds like the ultimate hell in my opinion :(

[@Adam-pk2te]

In my experience I think it comes from frustration and being overwhelmed (neurotypicals punch walls when they’re angry) a build up of energy You could argue that it could be a way to regain control over sensory input and social confusion or the primal urge to destroy thing that is annoying which could include your own skin

[@mglitz55]

One of my psychiatrists said it's a "reset" or a "jump" to the body/nervous system to kind of ground what is causing the compulsion to something solid/real as opposed to feelings/sensations.

[@Adam-pk2te]

Makes sense. I tend to tap my temples when light and sound is getting too much and it does feel a bit like a reset for a time@@mglitz55

[@lindat7525]

Frustration and overwhelm, that's my causes. And feeling "toooooo much". But when you mentioned being in pain it struck a chord. Pain, so much pain. 60-plus years of pain and it never stops.

[@MelHS-gr4lv]

"my thoughts: 1. prevention: make autistic people happier by removing the cause/stressors as much as possible (learn about autism!!!!! and what could be a stressor) as well as making sure self-maintenance is well, maintained (shower, food, exercise, free time, etc.). 2. redirect to a different stim/frustration outlet which is less damaging. Asking people to stop will not work I think, we need to replace the action. " good luck best wishes

[@Jynxedlove]

My neighbor's son was nonverbal autistic for a long time. But she worked with him with understanding, patience, and a very careful diet where she started taking out any food that would cause his stomach upset or other serious issues. She kept being patient and understanding and refused to lose her patience with him (if she was she would excuse herself for a minute instead) and eventually they got him at first talking, and then talking with other family, and then with neighbors. Now he likes to go around and do little odd-jobs for people around town like mowing the lawn or fixing some siding. And he's always incredibly meticulous. Some people get fustrated because he will ask you a question for any situation he did not have direct instructions for, but we love it. He never makes a mistake, and goes far out of his way to make sure it's done right the first time he does it. Once you have explained to him what he should do, he doesn't usually need to be told again, either. My boyfriend and I love teaching him how to do a job with care and those little details on how to do something well, and he always picks it up fast. I think it really goes to show how much having someone who is willing to learn who you are and to really listen and understand can really do miracles for autistic kids. Which also goes to show how much of what trauma we had as kids could have been avoided if we had parents who learned and really put in that extra effort to understand. Obviously not every kid is going to have such challenging start or be able to deal with other people as well even with the support, but maybe more of us will have parents that help their kids find their passions, be it rockets, or challenging themselves with home repairs.

[@jimwilliams3816]

❤️

[@tessaneko]

I still struggle with SIBing to this day, I actually caught myself doing it while watching this video. 😆 I have a tendency to rub my tongue against the edges of my teeth until it becomes raw and painful. I definitely have had a meltdown and bashed my head against the wall in response to being overwhelmed. I think it can almost be a version or stimming in a sense sometimes?? When I was a child I carried so much shame with SIB, especially picking at my skin. I think it’s something that really needs to be talked about more-especially Iike you said, in the case of children. I think a big reason it doesn’t is because of that shame and talking about it will de-stigmatize it. Thanks for bringing up this topic, I loved watching this video!

[@BrianBorges-ez3ls]

Hey Paige! My mum is upstairs and 85 (and still sharp as a tack). But she's been losing her hair (female pattern baldness does not run in her family). A couple of months ago I came upstairs, and stopped on the landing and watched her worry and pull out her hair for 5min straight. She also has scratched holes in her scalp -- when I was around 6, my Dad told me that she scratched holes in her arms after I'd asked him about it. I was a cutter (dermis, not muscle) and have 75+ scars on each inner-forearm. Hadn't done it in 20+ years until the lockdown when I did it 3 times. Haven't done it since, and have no desire to do so. Thanks for this vid. The solution involves a workable outlet for our near inconceivable levels of stress.💕

[@ckblackwoodmusic]

-shivers- Much love, brother; I'll bully you out of whatever's necessary ;)

[@RedRuby_27]

Wow when you said “it’s you Barbara “ I was like 👁️ 👄 👁️

[@Alenajellybeans]

my thoughts: 1. prevention: make autistic people happier by removing the cause/stressors as much as possible (learn about autism!!!!! and what could be a stressor) as well as making sure self-maintenance is well, maintained (shower, food, exercise, free time, etc.). 2. redirect to a different stim/frustration outlet which is less damaging. Asking people to stop will not work I think, we need to replace the action.

[@ashleywildman5811]

I think the cause of my SIBs is that the pain is grounding when things feel out of control, or my thoughts and feelings and sensations run too fast. That sharpness brings me back to my body and cuts through all of the stuff I’m simultaneously thinking and feeling. Literally waxing my legs feels good, I’m constantly tearing up my fingernails, skin, and hair, even though I want to look better and not having a lot of eyebrows undermines that, but it’s just so hard to stop. I can tell my life is going exceptionally good by how “long” my nails get.

[@kurtdoney9259]

I think this is one of the most enlightening comments I have seen as to why SIBs occurs during times of intense emotion or over stimulation. In personal experiences, it's as if the brain is overloaded with too much sensory input such as emotions like frustration, external stimulus, etc. and the SIBs behavior is a mechanism to break that mental overload state, which is running out of control from the individual or the individual is attempting to prevent an overloaded state from occurring. It's like attempting to do a hard reset on the brain when it gets locked into the overloaded state or when a person feels the precursors of an overloaded state coming on. This only applies to the intense side of SIBs and this is just based on my experiences and observations. I know there are multiple behaviors which can be considered SIBs, and I would need to think about those specific instances in order to form an opinion as to why they may be occurring. I am by no means an expert, but I have loved ones on the spectrum and I may be on the spectrum as well. I've never really seen a benefit to a late diagnosis now that I'm in my 30's and I feel as if I have managed things fairly well so far and have developed my own coping mechanisms; whether they are "healthy" is another story.

[@stephaniedayonot]

I am a newly diagnosed 33 year old woman. I went in for an adult diagnosis for ADHD to get insurance to cover meds I need for a fatigue disorder and, while I was there, they asked if I’d also like to be assessed for autism and voila! And I wasn’t the least bit surprised or upset. I think I’ve always known. I was diagnosed with ADHD at 8 years old but the diagnosis didn’t always seem to explain things that I experienced that weren’t neurotypjcal. This diagnosis was a year ago so I’m still educating myself to understand myself better. I fully relate, specifically, to the head banging phenomenon. I did it as a child and, honestly, did it most recently last September. I even relate to how it has always been during an argument or disagreement with someone I was close with. For me, the feelings I have when I end up banging my head against something is this deep desire to be understood. The frustration of not being able to articulate how I’m feeling, or what I need, overwhelms me and I my body tells me that somehow THIS is the answer. And when you say that it feels like it will hurt more NOT to do it just hit me so hard. That’s exactly what it feels like for me. Exactly. Whether I am or not, I feel that I’m someone who always has an answer to everything. Even if the answer is incomplete or incorrect at the time, I feel I always have an idea of how I feel about whatever is put in front of me. I think my autism meltdown red button is when, no matter how hard I try, I can’t think of a solution to the problem before me. I can’t think of where to begin or how to break cyclical thoughts, discussions, or disagreements. Something about the head banging feels like I’m punishing my brain for failing. It’s not about hurting my body, it’s about being angry I “didn’t get it right” and I can’t find the answer. I don’t know if it’s helpful but this is what I have to contribute. Thank you for this video. I didn’t realize how badly I needed to know it wasn’t just me.

[@aquamarine13yt]

I have picked my skin for my entire life. I am 19, and currently happier than ever but I still pick. It’s on my face, back of my neck and shoulders and thighs and arms and legs and I’ve had so much struggle. Doctors never intervened, they didn’t know what it was and they didn’t seem to care. My parents had to figure this out all on their own and it’s caused me so much grief in my life. I’m happier than ever now with my boyfriend who loves me and cares for me and thinks I’m beautiful despite this and it’s all I’ve ever wanted in my life to be accepted but my picking has been getting worse likely due to medication. I’ve had days even now I don’t want to leave the house because I can’t cover my face and there’s blood stains I can’t get out of some things. It’s horrible. I wouldn’t wish this on my worst enemy.

[@LadyHamsterton]

I didn't know u wrote a book but I teared up just reading the title. I thought everyone wanted to actively un-exist just because they didn't want to have to do PE at school that day. The amount of times I was told "teenagers these days think they're depressed/mentally ill/neurodivergent too quickly" and I thought: " I'm a teenager these days. So therefor I can't be autistic, or depressed. Everyone feels like this".. Like fr. I banged my head against tile floor for sometimes an hour when I was barely even 2 years old. And still I had to fight for a diagnosis at 16.

[@CAnatone]

I think, at least in some cases, it is caused by a massive overwhelm where there seems to be no solution or answer, if that makes sense. If you are someone whose mind is constantly racing and looking for answers and solutions and you become so overwhelmed that your mind can't think of a way forward, but you feel like you have to do SOMETHING, doing something physical is a way to get out that tension. It may make you feel less helpless because you are doing something. I think (for some) it is a way to relieve tension and self soothe. The question is, why not turn to some other stimming behavior? So the solution could be, what other stimming behavior can we replace the SIB with that achieves the same thing for the individual? I think we need to figure out what the person gets out of the action. Is it making them feel calm? More in control? Relieved? For most people (especially those with alexithymia) answering this is easier said than done. Then, we need to figure out why? What sparks the desire to do this and what are they thinking or feeling (or both) right before? That may help to narrow it down. If we know these things, we can find some sort of physical activity to replace the SIB. Something that is achieving the same thing. When working with someone who has difficulty communicating, this is going to be even more difficult. I think the main thing is that you can't just stop the behavior without replacing it with something else because the behavior is doing something for the individual, so without finding a replacement, tension could build and build and then maybe result in an even more intense and harmful SIB.

[@BearingtonT]

For me SIBs happen for 2 reasons, but both are regulation based. This has been consistent for 35 years. 1. Maladaptive stims that are habits (skin picking, cheek biting, teeth gribding). Solution: replacing SIB stem with healthy stim. Gentle reminders & assisting me with diverting to a better stim have helped. 2. When a situation becomes so overstimulating, especially emotionally, that there is no way to down regulate that isn't explicit violence against my person. For example, smashing my head into things. No amount of deep breathing, screaming into a pillow, or any non-violent action can de-escalate the situation. Once the meltdown begins and the height of the distress is reached, I will unconsciously engage in these excessively violent SIBs, such as the head banging. Head banging is particularly "helpful" as a SIB - for myself it appears to be the quickest way to down regulate, and / or it lasts the shortest time as it makes oneself dizzy or unconscious so it cannot continue to escalate. Unfortunately, the consequence is brain damage and potentially death 🙃 hence me putting helpful in quotation marks. I just can't think of a better word to choose to describe the effectiveness of that as a meltdown induced SIB. Solution: I do not know how anyone could assist. If I was physically restrained and so unable to engage in SIB, I would likely thrash and scream till I had laryngitis. I have only been restrained once in a scenario like this and it took multiple hours for me to be able to down regulate. It's like having the fight and flight response happen at the same time and being unable to escape it. The most important thing is to ensure things that cause the meltdowns are avoided at all costs. Once it's happened it is too late, and I will be unable to regulate.

[@jasminvomwalde7497]

Something that calms me down is if something really heavy is put on me. My ex boyfriend used to lie on top of me and then release all the tension in his body. Those extra 90 kg pressure always calmed me down quickly. But I admit you need to have someone you really trust to do that to you (maybe with a board in between if you don‘t want to touch the person) and it only works at home.

[@jimwilliams3816]

Fight and flight at the same time is horrible. I sometimes call it “trapped” which is why restraint would be the worst thing. I find animal analogies work well (there’s so little difference between an animal’s nervous system and a human’s), and it feels like the interval where I am realizing the predator is too close and I still want desperately to run but sense I have no choice but to defend myself.

[@9Flatline]

**Trigger warning** Additional context I wasn't diagnosed with autism till I moved out and was in college I lived with a very physically and verbally abusive stepfather and his response to me having meltdowns would be shouting and violence. I remember in that state the SIB's that I engaged in they didn't hurt. They were only thing I could control and they are what kept me from being violent. (Which is what happened when I was younger and before lived in a house with my stepdad. Generally I would go into a meltdown state and people would crowd and try and calm be down but I just would feel trapped and need them away from me so I got violent. we are talking roughly 3-8 here) Anyways, as I got older I got to a point where I didn't want to hurt people in those meltdown states. So when I would start approaching a meltdown I would clench my hands repeatedly or wring them or scratch my arm. But as I continued to progress through a meltdown especially when experience physical abuse, I they would become frantic and more intense. To the point I have scars from scratching my arms till they bleed, and nerve damages from clenching my fists so hard i put my fingernails through my hand. I also have pulled hair out in chunks, washed my hands until they bleed, bitten my hand and arms till I bleed and hit my hand or self against something till I bruised. These behaviors often are almost always accompanist by bouts of mutetism where I physically can't speak. And additionally, the only times I experience any of the more minor SIB's they are often triggered by a bout of selective mutetism occurring when I need to express something and can't/ or when I start to stutter and can't move past it until I finish my word but the words just won't come out. And in situations where I am stuck unable to properly communicate the only thing that I can do to express that internal pain in a way other people can understand the distress is through those SIBS and they again provide some level of Control and comfort. I still have these compulsions when I'm in a meltdown state even now as an adult. I can moderate their severity but it is something I still struggle with.

[@KatjaTheAutiArtist]

I completely agree more education for EVERYONE about AUTISM!!! And Self-injurous behaviors for me often in in response to feeling like a break in communication- that no one understands or every= will and I literally am standing there banging my head on something trying to make it make sense. I don't know how else to describe it. Thank you for being here using your voice for those who don;t have the words.

[@samamsterdam4301]

When I was little I used to bite my lip and peel little pieces of skin off. Many times it went too deep and would bleed. Then as I got a little older I would hit myself in the face. Unfortunately, I now have a standing appointment at the Eye Doctor because I detached both of my Retinas. Thankfully they were able to fix my eyes with Scleral Buckles and I can see as long as I wear my glasses from the time I get up until the time I go to bed. I stopped doing that to myself after my surgeries because that hurt really bad. My Doctors were confused as to why my Retinas detached and I was like, "Uh I don't know." They attributed it to maybe me being born very premature due to the Unbilical Cord being wrapped around my neck. Painfully, all these years later that I have my Autism Diagnosis, and I'm retracing my whole life, I realize that I'm the one who did it to myself by punching myself in the face. As I get older I can see scar tissue under my skin high on my cheeck bone under my eyes where I can actually see the damage I did from hitting myself. I don't think most people would notice it but it's there. Looks a little puffy. Also, one of my main stims now is picking my fingers. My thumbs are destroyed and my fingers sometimes bleed and look all trashed. People ask me, "What happened to your thumbs?...Did you smash them?

[@ollie8500]

I’m an autistic adult! Removing or avoiding things that cause extreme distress is the number one thing I can think of to avoid self injury behaviors. But it’s always going to come back and happen! My therapist and I have been working on replacement behaviors that give me a really intense physical feeling that I’m looking for When doing an injuries behavior. This look like hitting my legs instead of my face. Not good but definitely better! Chucking a ball at a wall. Taking a really cold shower screaming. Using a nutcracker. Like on Brazil nuts big ass nuts very satisfying.

[@jjsmilemore26]

I'm late diagnosed, age 40. I still engage in SIB behavior. It definitely doesn't mean it's tied to the event that takes place in the moment. I can honestly say it's cumulative stress and that last event Is just what pushes me over the tipping point. I usually am begging for rest, quiet, sleep, self care or some understanding long before I break and then I hit a point of meltdown and if in that moment I am shamed or punished or misunderstood I start to hit myself, hit my head on walls, I use to be a cutter. I've had some bad ones recently where i ended up barefoot in the streets crying in below 0 Temps because I don't want to meltdown in front of my kids or lash out on people or go to jail for yelling but I ended up slamming my foot in the door leaving and injuring myself, hurt myself freezing. As a child I was accused if doing these things for attention. In my brain it's yelling that I'm the source of everyone's pain, I'm the problem. I'm never gonna be OK, I need to die. But what I really needed was to feel safe and be allowed to melt down by myself without peoplecusing my dysregulation as a moment to attack me which is what was happening on my last major meltdown. My partner is trying to understand but he has the tendency to kick me out when I get loud or threaten to call police because yelling is his trigger. We have worked with my therapist on a plan to allow me to melt down safely in my home but once he's triggered I find myself in the street and alone and misunderstood. I also have PMDD so most of my meltdowns and self harm happen during that time whole om trying to battle intrusive thoughts of suicide.

[@Catlily5]

I don't think that you can go to jail for yelling. At least not in the USA. Well, maybe if you threaten people. I hope you can find another solution so you don't have to be out alone at night? Can you scream into a pillow so your husband can't hear?

[@jayme-lynn]

This makes so much sense!!! I always used to get frustrated when ppl would call behaviors that I now know was SIBs and would just call it SH. I remember being frustrated cus I was being misunderstood but I didn't know how to fix it.

[@jimwilliams3816]

100% agree.

[@eleanorsherry4620]

for me, my SIB's like skin picking/scab picking/nail biting fall more into the category of stimming or fidgeting rather than something that happens during a meltdown. (granted I havent had a full meltdown in a WHILE)

[@nefertitimontoya]

This just made me realize the difference thank you

[@natalyaa3514]

I literally self harmed myself the other day because I was feeling too much.. can't wait to watch this!

[@EnscornedByHumanity]

What specifically do you do when you have SIB?

[@hodgeh]

For me, my SIB is overwhelm driven. Too much good feelz, bad feelz, tired, hungry, segs needs, holding in stims too long, masking too long, the sound of the fridge or lights or my husband breathing loud AF... Anything that causes me disregulation will lead to SIB. Don't have a how to stop it but I do know that the medication Lyrica was helpful for my skin feeling like it was on fire leading to SIB and Xanax was helpful in calming my nervous system and relieving the extreme anxiety... Neither of which are options for children but it's the only things I've found in my 20 years of trying things to help/stop my SIB. I'm definitely with you on it's not caused by something that just happened, again for me, it's my nervous system can't handle ALL OF THE THINGS.

[@nefertitimontoya]

Mapping out a space is SO REAL OMG

[@foggy_fennec7824]

This is why I love being an autistic social worker, even when the kids can't verbalize there feeling during certain things I understand and help self regulation

[@queerlyk1668]

Autistic social worker here! And you’re absolutely right, we don’t learn enough about autism in school. I think the blessing and the curse of social work is that it’s such a broad field so our training is so broad that we come out of school knowing about a lot of things, but only on a surface level. And then when you go into a position that is more specialized, it’s incumbent on the organization or the social worker themselves to make sure that we get the specialized training we need for that role. And social workers are notoriously underpaid and overworked, so there ends up not being much time or money to GET that training adequately. That’s a big part of the reason that I work mostly with autistic and LGBT folks lol…Cause I am both of those things and I had years of accumulated knowledge and experience to draw on, and I knew my heart was in those issues enough to take on the burden of the additional education I needed.

[@neapea00]

Honestly, I have a hard time knowing why I should stop the self harming behaviors I have. I think if something would scare me off enough I would stop. Like if I knew more how bad it is for me then I would prob have more motivation to stop. But right now it’s hard for me to see why I should stop when it regulates me and I just pick hair and hit my head. I felt the same when I learned how much not sleeping breaks your brain I started sleeping more. I just need reasons and facts to change my behavior because just switching to something else is not going to “stick” because I wanna do what I always done sense I was a kid if that makes sense. So my answer is I don’t know if stopping some types of self harm is even possible or necessary in my case. All tho other cases can cause real damage tho and that’s another question. I guess banging my head is the most dangerous one I do at the moment

[@PostTraumaticVictory]

I remember your reaction to that edit coming out waaay differently than you had expected/planned, and it made me feel so sad for you that they missed the mark -- I'm so happy you're revisiting it and communicating everything you wanted to!

[@daylekennedy891]

I’m completing my Bachelors of Social Work in B.C and can confirm the only thing I learned about autism in my degree is when I was taking a mental health class and asked to do a presentation on autism - it wasn’t even on the pick lists. Doing your own research is so important

[@Glitteryglows]

First and foremost: thank you for this topic. ❤️Me personally, I would like to add a fifth one… Unable to find or keep a job as an autistic person.

[@two_5]

im autistic (+adhd) and before i knew i was autistic when i thought i was having panic attacks (actually were meltdowns) i would hit my legs and scratch my skin raw and at least for me it was because i didnt know why i felt how i did and why i had such strong emotions and why no one else got it. not being able to communicate or even understand why i was feeling that way was so incredibly frustrating and physically painful self injurious behavior unfortunately was my outlet. also your point about how you never were pushed to that point without the involvement of other people is so real

[@kailey5980]

Sometimes I think it's because we can't fully identify all of the things that are causing us to have sensory overload, so we create a physical cause to explain it. I am now in pain because I hit my head which is a lot easier to mentally recover from and focus on than ALL of the other sensory input that has caused you to get to this point. You then can feel more in control of what you are feeling.

[@maiarustad5062]

YES THIS, THIS IS IT. Also dovetails with when the people around you don't seem to be taking our pain and discomfort seriously, so something in our brain is just like "well they can see a scar, they can see clumps of hair, maybe then I'll get the support I need."

[@jimwilliams3816]

@maiarustad5062 Wow, thanks for that description. That’s not my version of SIB, but I think it is my wife’s. It’s been hard for me to process hers because I am so aware of how mine work. That framing helps me understand how it works for her. And it may help me explain my version to her, I think she may have the same thing the other way around, it seems to her like mine must be like hers.

[@maiarustad5062]

@@jimwilliams3816 It's so hard, when you see someone struggling in a similar way to you (especially when such a struggle is not often reflected in wider society) to not assume they're doing it for similar reasons. I'm glad I (and kailey) could help illuminate some of your wife's perspective to you and possibly vice versa! I wish you much open communication that leads to the further strengthening of your bond. ^u^ Also always glad to know even a small paragraph of my writing may have a positive impact. As an unpublished writer, that sort of validation is hard to come by, so thank you for that.

[@spacebar9733]

Control. I agree. I used to self harm to feel in control. And I guess I still do but less dangerously.

[@ckblackwoodmusic]

My main stim is compulsive tongue-biting so as ever, thank you for this ❤

[@BrianBorges-ez3ls]

Wow! I did that so much as a kid, people would always point it out. When my "friends" in University mocked me when shooting pool in the games-room, I finally broke the habit. Gee, thanks!🙄

[@ckblackwoodmusic]

@@BrianBorges-ez3ls Ugh. I hate that you were mocked for it but glad that it's stopped... unless you replaced it with something else of the same nature?

[@BrianBorges-ez3ls]

@@ckblackwoodmusic Thank you! And EXCELLENT instincts! I did replace it with something far worse, my comment on that, and my mum, is above. I wish I'd had people like you and Paige back then.( 80's/90's)

[@kai_fatallysapphic]

i used to clack my teeth together but since they chipped recently I've had to switch to biting my tongue, lip or cheek 🥲

[@ckblackwoodmusic]

@@kai_fatallysapphic Ugh. That's just awful.... I used to bite the inner cheek as a kid as well. Has the dentist added implants?

[@an-genga]

That's like how I have to keep spinning around to the right on my walks---my right calf cramps and my right knee joint starts to hurt, but I can't just stop. the pain feels like an unfortunate side effect to something that brings me a lot of comfort and satisfaction. I tell myself to just start spinning to the left, but no, it has to be to the right otherwise it feels wrong...

[@timtreefrog9646]

I love the background. Monsters Inc rocks. EDIT: Aide Canada rocks as well.

[@Lilibet0]

🙌 This was such a helpful video to watch/listen to!! I didn’t know I was autistic and I felt so much shame for my SIB-ing. I’ve been researching meltdowns after my diagnosis, and this really affirmed me in just the right way I needed. People seem to have a really hard time explaining what meltdowns are and how SIB can happen…and I think it is bc everyone is grappling with shame that leverages the concepts of responsibility, self-control, morality, and social expectations. I’m “holding out hope for” freedom and liberation for all from the shackles of prejudice and lack of understanding, especially us autistic people.

[@nannywhumpers5702]

Oh holy heck, you are the one I'm reading, I'm so glad you mentioned the book. It's helped me so much, I started the book, had a shutdown due to life, and was afraid of listening again, I was so fragile. But I did, and the way you broke down some stuff helped so much. I'm so much better today then I was a week ago. My son is surprised how fast I've been recovering from this one. Thank you so much.

[@kimberlychilds5744]

My experience has been 100% just that the energy peaks in intensity, and I don't have a choice on the explosive release. I only get to choose which direction to release the energy. I know that it is unacceptable to harm my surroundings or other people, and so I direct it to myself. When I was younger it meant scratching a singular spot on my skin in silence while at school. Nowadays it's hitting myself in the head. I don't enjoy it, and it's hard to not criticize myself endlessly for it, but I haven't found anything else that can regulate me faster. And when you are in a situation where you CANNOT be dysregulated, that hard reset is needed. I think of it a lot like turning off an old computer with the power button instead of with the software and the mouse. It could cause some damage, but sometimes you needed to because the system froze up and nothing else would work.

[@kirbyqueen2901]

as a pediatric occupational therapy assistant i love your videos and your knowledge and videos are so important. youre amazing and thank you for what you do

[@oddluck4216]

Hi! I'm newly-realized ASC (at 44, I've masked too well for too long), but have struggled with NSSI for as long as I can remember. I mostly bite myself (which I've discovered is at least part anxious stim), have hit myself, hit walls (injuring my hands), and bang my head. I worked for years to get it under control - which really just meant I did it rarely, carefully, and with self-aware "permission" - but the urge has never abated, and I've always felt shame for it... until in the last year as I've grasped my autistic reality. Understanding the that the impulse is inherent, is not yet another "wrong" thing about me to feel shame over, removing that stigma (even if only in my mind) has actually helped me recognize and acknowledge the need for it. I'm learning to appraise and honor those urges, assess the underlying issue/emotion (as well as alexithymia allows), and either redirect by grabbing something else to chew or allow myself to SI in a controlled way. I'm learning the SI, in general, seems to come from a mix of places, but I think originates from an inability to properly express feelings of anger, anxiety, frustration, irritation, etc. - perhaps even an inability to understand those feelings. I still suppress as much as I can, publicly. I don't want to distress my family by watching me hurt myself. But, understanding it, even "embracing" (for lack of a better term) it, has helped take the sting of taboo out of it which has, paradoxically, lessened its power. Sorry for such a long response, but I got into a flow. (Might need to go write a post/article about this...) Thank you for being one of the best resources and advocates I've found for even us old autists! Please keep doing what you're doing! 😁 [eta] I actually wrote this after pausing RIGHT before you distinguished SIB from Self-harm. I have, indeed, indeed conflated the two, and what I said pertains more to the Self-harm side of things, but still applies to my SIBs, too. (I did mention biting/chewing is a stim...) Thanks again!

[@merbst]

hey its nice to meet a fellow 40-something neurotypical KZbinr! **shakes your hand vigorously** My name is Matt E, from southern California (think Disneyland), and it is my pleasure to meet you.

[@merbst]

Regarding your [edit] about impulsively spending hours writing a long fiery reply in the YT comments because of our instinct to correct misinformation & ensure nobody be misled info a misunderstanding, having observed this exact sequence cause too much harm before, only to discover that the content addresses every one of the concerns that hsd caused you such alarm, only to realize that it was indeed covered, far more succinctly than thought possible: Boy I sure have been there! Also, when I see artifacts of such a process, I think to myself "There's someone who shares my passion toward Epistemic Justice & Virtue Epistemology, I think to myself "I like that guy (person) & I hope for nothing but the best for him! I sure hope he is living the lifestyle of my dreams. This happens to me so ofte thlla5at I collected them into a text archive that intend to publish it into a bo}length Digital Public Asset, which eould re mamed titled something aboyt

[@Jynxedlove]

I got a TBI and lost a bunch of coping skills. Suddenly I started having SIBs again. Fortunately as I worked on recovery I started getting better at the emotional regulation I needed to not do so.

[@brazen1]

5 years ago today I hit a utility pole while driving and got a TBI. Regaining the emotional regulation I lost has been a real journey; wishing you the best.

[@jimwilliams3816]

Please ignore this if it’s too personal. Would either or both of you be willing to comment on whether or not you lost consciousness, and/or how quickly the changes in your behavior manifested? I am always asked about the first when I discuss a blow to the head I experienced a few years back. It was the kind of impact the prefrontal cortex does not like, but I remained conscious. And it was several months later than I started to get really bad. It’s hard to judge, because there were serious life stresses at that time, and I can plot the arc of my deterioration as starting some years before that. The blow would only be a part of what was almost a perfect storm of stress that led me really disintegrate over the following years, but I still wonder if it played a significant role.

[@Jynxedlove]

@@jimwilliams3816 Mine was hypoxic not physical, but I lost consciousness.

[@HadiyahSackey]

i really loved this video. i think personally whenever i get headbangy it typically is at the height of a meltdown either where i am overwhelmed w anger, fear, overstimulation and an inability to describe my experience and why im getting so "worked up" or whatever. that frustration makes me (tw: violence) bang my head or dig my nails into skin yada yada. It's terrible, but in the moment, it feels like all i can do to release like pressure (my head gets so full and loud it really does feel like pressure) in my head.

[@ninimeggie4771]

As a teacher in the US, I didn't have any classes talking about autism for more than a single lesson. And those couple lessons I had over the course of 6 years contradicted each other. I was so overwhelmed when I started out teaching and had an autistic student with higher support needs and frequent Self injurious behaviors. I was told "yeah sometimes he does that" when I explained to his mom and special Ed team that he was aggressively biting himself. These were the people who were supposed to know him the best and were in charge of creating the plan to help him succeed at school yet for his SIBs it was "just something he does" and I wasn't supposed to do anything about it... it felt so wrong because he was clearly doing it when he was disregulated but I normally couldn't recognize the trigger

[@wayneisname4544]

My autistic childhood in a nutshell: "if you need help just ask" If only it was that easy. I don't even know where to start. There's just so much that I can't explain. I couldn't even verbalize what I just said back then. I didn't know what it was to be overwhelmed, I didn't know that the reason I couldn't focus is because I shut down, nothing made sense because I couldn't go back to the beginning of the school year and have the teacher slow down, I didn't know how to say "I don't get it". Most of my childhood was a blur, I just felt like a zombie. Somehow as I got older, things got better and so did my grades. I still can't do mental math but I know formulas and methods and how to use a calculator. That's how I graduated highschool, hopefully I can get through college 🤷

[@austinbernard7767]

It feels like my brain is a computer that doesn't have a power button. I'm like trying to turn it off by trying knock myself out. Thankfully the new knowledge I have, gives more ways to cope.

[@kimstrandberg9529]

We need to teach attachment styles in high school and explain toxic dynamics so we can break these toxic cycles of bringing children into the world when we are simply repeating our dysfunctional family relationships. Know thyself and know what to look for and don’t rush relationships bc narcs will soon tell on themselves, but they like to move relationships really fast. In such an individualistic world, we promote and celebrate narcissistic and psychopathic behaviour. They are everywhere and they too are also victims of childhood trauma (although psychopathy is more genetic). But if we want to make real change in the future, we need to educate teens about how these dynamics work before they get a chance to do real damage. This is an adjunct to my previous post where I shared my opinion that autism/adhd and Cluster B are inherently anxiety disorders gone awry due to unhealed and unprocessed generational trauma made manifest.

[@idasvenning3892]

I really like that you call it SIB instead of SH, because the harm is, as you said, not the point but a consequence. For me it's always part of a meltdown (which are thankfully rare nowadays), because everything is too much and I would rather hurt on the outside than on the inside. I usually feel bad/weird afterwards and I don't know how much of that is unecessary shame from others and how much is my body/mind telling me that wasn't actually a great way to handle the situation.

[@SunshineSupportUK]

Thanks for sharing this - there needs to be a lot more awareness of how self-harm and self-injurious behaviour can be supported in autistic folk. We're holding a webinar on this exact topic tomorrow, a lot of parents struggle to know how to help their children (and autistic adults of course) so we hope that it helps.

[@blueredyns7392]

I have SIBs like scratching skin with my nails until I bleed, biting my lips until they bleed, and hitting myself/hitting the walls. When I was little, after a meltdown, I would desperately look to my parents to know what to do, and I'd tell them about these things happening, and they would just be horrified and push me away (figuratively). The only thing that's made it better in adulthood is having a loving partner who provides support and knowing how to redirect the SIBs (such as with fidget toys or punching pillows). It doesn't always work, and I still struggle with it. I've also had several therapists before my current one who tried to treat SIBs like they're self-harming, which do not come from the same root cause and so can't be treated the same. Increasing my self esteem and getting medicated doesn't stop the SIBs. Having a therapist who's autistic has been an enormous help.

[@민지야-l3p]

I engage in SIBs and also SH and I never knew about SIB until I learnt about autism and realised I am too. For years my therapists have asked me to keep logs of my SH and I never ever included SIBs because it seems like internally I knew the difference (though there were times I definitely should have counted hitting myself as SH 😅) and now these last 2 days that I've deepdived into it, I realised just how much suffering people who engage in SIBs go through and looking back at my own behaviours in adulthood, teens and childhood makes me break into tears 😭 I hit myself when I'm about to meltdown, meltdown or when I'm extremely overstimulated as the punches for god knows why regulate me more than many things but the severity has to be SEVERE. It has to be extreme sensory overload being pushed down until I'm in extreme distress and have to punch my thighs in public to be able to carry on or before meltdowns when I'm also in severe distress. Almost all meltdowns include SIBs sadly though not all as I usually don't meltdown unless I'm at an extreme (ironic because I've been having meltdowns almost weekly to even biweekly the past month 😅 bad month. Horrible experiences at university+ have my neighbour refurbishing the apartment and the drill is going from 8:30am to 2pm and then 5pm-7pm EVERY DAY FOR THE LAST MONTH like omfg save me please, I had enough with living inside my own place being refurbished for over a year 😭 No more 😭) IDK i wish there was more knowledge on it and I could tell my therapists about it without getting the worst looks ever like I'm insane for not calling it SH like no I don't wanna hurt but I'm hurting so bad inside that the outside hurt is sadly soothing and doesn't actually hurt... I'm lucky I know my head is dangerous to hit and can usually divert to my thighs but as a teen and probably child it was extremely hard to the head and I was weak as fuck so I'm scared for strong children who hit themselves super hard or against things how much they can injure themselves 😢 we need more resources and knowledge asap

[@kb9847]

I'm 55 yrs old and I do a lot of SIB still. It's an emotional release for me, as well helps me decompress and zone out.

[@Whirlbee]

The thing that really tips it over the edge for the bigger ones for me is generally there being no way to escape (eg, someone playing obnoxiously loud music and the bass is shaking everything/vibrations everywhere - there's no inch of space where I can't not hear/feel it & I can hear/feel it through my headphones, and the noise/vibrations just keep bouncing around in my head and builds up until it explodes and you need something big to ground yourself but it's kind of automatic so it's not the intention it's like your body is taking over to try and survive The smaller ones like skin picking are more around things that make me anxious

[@humanBonsai]

It is difficult to rationalise because I don’t think it is a fully conscious decision. But in sensory overwhelm and/or meltdown it feels like a way to regain some firm ground, to create some focus in the shitstorm and release some pressure.

[@lyricsandmusicanddl]

hi Paige i’m an autistic social worker with sibs! you’re absolutely right!!!!!!!!! i work to keep kiddos in the home and have a current family who all have a diagnosis I’m so understanding to everything they say. I want to start a channel abojt the cases I work with because I’m so dumbfounded by the system and the incompetent social workers. I have my msw and I literally 0 in school basically. it’s so upsetting how they set us up to fail!!! this is a great video!! Thank you!!!

[@lyricsandmusicanddl]

For my my sibs comes from my mom not wanting to hear me out. I’m so willing to hear her out and she always cuts me off and doesn’t let me walk away. She’d rather engage in an argument and I’d rather calm down and address it later.

[@derekkerr6158]

I know some of my SIBing was in my early teens. Usually after an argument of some sort or a stressful situation or long after just thinking about it and replaying it in my mind. One thing I did to stop this was getting the energy out by working out or going skateboarding.

[@leaf2309]

as an autistic person who is a disability support worker who has worked with someone who had very intense SIB and was hospitalised a lot, i tried to advocate for him a lot and i dont know how much difference i made i still think about him and hope he is more well, but i truely believe it happened because of neglect and unmet needs in his supported living home

[@mglitz55]

I've just recently begun to admit to my SIB (I'm turning 32 next month). I'm trying to get it under control and work towards replacing them with other less extreme things or to not "need" to? Still figuring out how to get out of that. Also, I agree with the difference between self harm and SIB. I didn't know the difference between my panic attacks and meltdowns at work. I did self harm while my depression was rampant and neverending, but once I found a med that took care of my intrusive thoughts/depression I still self harmed, but with a totally different reason. My SIB is mostly during my meltdowns. Head hitting with the heel of my hand, scratching or pinching myself. Just about a month ago, I was in view of someone from the chest up and couldn't head bang and it got harder and harder, but hiding it was higher priority (at work) so instead in my meltdown I ended up cutting myself. That was scary, didn't hurt. Another work meltdown, a mess was made at the end of my shift and I had to clean it up, it was difficult, had already been a bad day and got the mess all over my arm, went to wash it off and was scratching myself and leaving red scratches that started to bleed. Didn't feel the pain. Too much. Too too much. Eventually it leads to SIB for me.

[@ChemiConscious1]

Great video, Paige. The autism community is fortunate to have you as an advocate. I just want to point out the correct pronunciation of the term self injurious (in-jury-us). Keep the videos coming 😊

[@acreepycookie3275]

As someone who has family members on the education system, we do need so much more information and resources for those teachers and staff members working with kids. Recently my mom’s sister in law started to go to school to work with special needs kids. Likely because she saw my mom who teaches exclusively special needs classes and how much she loves working with them. My mom has said on multiple occasions that she would rather work with special needs kids than in a normal classroom. Every year she works in a normal classroom I see her mental health decline. This is very likely because my mom does really know how to interact with neurotypicals since she’s not and most people in our family aren’t. Her sister in law, however, is neurotypical. She hasn’t even finished school (she’s not even halfway through it) and she’s already working with these kids every day. I can tell you, she needs better education. She should not be working with these kids with how little she knows about them and their needs and how they experience the world. My mom was able to be such a good teacher for these kids because she was one and she does her research outside of what’s required for her when she has a student who has needs she’s never encountered before. She talks to their parents, she reads articles, she advocates so much for her kids. She’s gone in front of the school board multiple times to advocate for her students. She goes above and beyond for them because she knows what it’s like to be them. Maybe I’m a bit salty because her sister in law and I got into a disagreement recently but she does not do that. The way she treated me during our disagreement was so disrespectful of my needs and accommodations that I genuinely believe she should not be in charge of any of the kids she is. To put a long story short, she wanted me to watch her kids and I have sensory issues that make me watching kids for long periods of time not a good idea. I told her this and she said I was using my neurological differences as an excuse and then called me several names. I have known this woman for over five years. She knows I am autistic. I’ve talked to her extensively about my sensory struggles and my need for accommodations. If she is willing to act this way to someone who has shared their struggles with her and who she has known for a long time, what is she going to say to kids who don’t have that history with her when they explain their need for accommodations? Sorry for the rant but I’ve seen the difference between good teachers and bad teachers from both the student perspective and from behind the curtain. There needs to be more education and resources for teachers that they don’t have to search for. I’ve seen my mother spend days researching for her kids with resources she had to find for herself. It is a disgrace to those kids and their teachers that these resources are so hard to find. Kids need their teachers to understand what they need.

[@shakahbrah7934]

Yeah, I can never tell if my SIB was so exacerbated when I was younger due to my abusive home life normalizing it or due to the pressure and hyposensitivity I suffered from given autism. It would always feel regulatory, even if I’d feel weird about it later. I think a lot of my issue was control, so I was fairly secretive about everything and never leaned into or addressed the feelings and concerns stirring this up with anyone who could help. I think having nonjudgmental support around you matters a lot. I was scared that I was behaving this way but I knew that the adults around me would respond controllingly, judgmentally, publicly, and likely violently. I want to hear out arguments about raising kids with “discipline” but I think that parents’ retaliation to a cry for help like that matters tremendously, and the kid is not going to learn anything productive that would sustainably stop the SIB. To work through it and remain on the same team, I think there needs to be a rational journey where the motivation is identified and addressed as well as possible, while new coping mechanisms and life skills are implemented. Autistic kids need to be able to lean on their communities and fully engage with hard topics like this in order to someday feel more comfortable, much like any other kid with any other struggle.

[@SolCamilaLugo]

I truly believe its an equal combination of three factors which also affect each other: one of them being the environment we find ourselves in physically, where and how it is, sensory/emotionally wise. Secondly, its about privilege and the access we can have to basic needs being met, including time (having time to educate ourselves or regulate ourselves and better our surroundings, sadly, is a privilege) and resources to adapt our environment and our routines. Accessing accommodations is, many times, a privilege. Having a job, having a support system, acess to healthcare or even basic life resources can all fluctuate depending o who we aee and where we are in the world or in our lives. Thirdly, and previously mentioned, education: easy to access and trustworthy resources are harder to find. All three coexist and balance one another. Without education, I cannot better my enviroment but without money i cannot access education and without the enviroment I cannot work on getting the educagion and so on... This is all my opinion being an autistic woman in south america, having worked with families members of higher support needs kids and different professionals... we always seem to come down to these three factors being what leads to our suffering in general.

[@Michael_H_Nielsen]

the advice about learning the niche things that can bother an individual child is gold advice. Awesome advice :)

[@jimwilliams3816]

It just occurred to me to mention -according to Robert Sapolsky, displaced aggression actually lowers stress hormones in primates, including humans. In baboons, a high ranking male might decide to pummel a lower ranking male, and the lower ranked male might then reduce stress but pummeling an even lower ranked individual. So in the case of a meltdown, pummeling oneself probably does help regulate. It’s the release of frustrated energy. A personal distinction also just occurred to me: in a true meltdown, I get extremely frustrated, but fundamentally it’s with my overwhelmed nervous system and its inability to regulate, and that’s when I’m likely to pummel myself. When I am more outwardly fight or flighty, that’s when I might smash something on the floor. (Thankfully, I seem to have no impulse to pummel anyone but me.)

[@ericaaubie860]

Your amazing to talk on Autism.

[@kajielin4354]

I've struggled with both SIB and SH, and I wish I had been able to articulate the difference like that! especially when asked about the results of SIB, people would want to know 'why did you do that?' and the answer was just 'I don't know and I didn't want to' And when I first went to get a diagnosis the diagnostician looked at me, went "girl + selfharm = bpd" and that was that. Took me a few years and different doctors to find out I'm autistic, actually, amd it should have been obvious from the very start

[@TweezleOhm]

Love you, Paige! I had a good little laugh to myself when you got to the part about picking the skin off one's fingers being an example of SIB's because just seconds before that I had paused the video to have a little talk to myself about how many times I have had a confrontation with someone (usually an angry customer at work) only to notice afterwards that my finger hurt or felt sticky (I hate sticky feeling) and realized that I had picked my finger completely bloody during that interaction without even knowing I was doing it. And it's nothing new- I pick my fingers all the time anyway and have since I was 2- but since I've been an adult I usually don't pick them bloody anymore unless something happens. And yes, it has never had anything to do with wanting to harm myself. Just, I have to do it because either I'm stressed or sometimes simply because that bit of skin or nail was bugging me and it had to go. I do the same thing now with my face since I had a weird kind of cancer that made beard hair grow on my chin (I'm a woman) and I don't care if nobody can see it, I can feel it with my fingers and if I can feel it, it has to be plucked so now my chin is often red or scabby. I'm so glad this issue is getting some serious attention because trying to punish the behavior away is not the solution and that's what happens to a lot of us when parents or other people don't understand. Thank you for being a part of this.

[@path5657]

We need to talk about the fact that you need to pay several thousand dollars to get an assement in Canada. What is this, the USA?

[@TomsOnUK]

It’s really good you have made a video on this really important topic of autism not always discussed and helped educate us

[@I_m_ryn]

As a kid and teenager I used to pick my nails bloody and the skin around it, punch stuff to feel pain, etc. cause it felt like it was too much and being raised by a narcissist parent who neglected me or raged on me and my twin (which also explained why I was undiagnosed😅). I do believe it also applies to adults, it’s just that it’s different (like drugs, alcohol, thrill seeking, dangerous behavior…) that are more “acceptable” for adults, and especially if you are a late diagnosed adult. (Just a take from an AuDHD late diagnosed in my late thirties) 😂

[@brazen1]

I would often compulsively pick at my skin while trying to get ready for school oh so many years ago. While I don't do it much as an adult (very occasional picking and I've put a cigarette out on my arm twice, barely feeling a thing), there have been a few occasions that stand out enough to find commonality between the vastly separate time periods where I've experienced SIBs. For me it's always been associated with a sense of being completely overwhelmed in combination with a feeling of utter helplessness to change the circumstances that are causing that sensation. It's a very sisyphean feeling accompanied with a strong state of body dissociation to the point where I don't feel pain like I should or normally would.

[@rachelcombiths8868]

For me-my self injurious behavior is caused by me not understanding my emotions or how to handle them, which overwhelms me more than I initially was and it creates a great environment for dissociation and self injurious behaviors. 💙

[@asphaltierenderassassine]

I do a lot of SIB, mostly biting but also scratching or hitting myself. Head banging is less common but I do that too. The worst thing is having a parent that can't handle it. My mother gets very aggressive, starts yelling at me or threatens me that she will hurt me if I continue (because me hurting myself in distress is not okay but her doing it on purpose would be totally fine! I love that logic), making everything about herself and how she's feeling about my emotions. It's unbearable and has only made it worse since it stresses me so much and I don't have a healthy way of coping with feelings, but especially with my anger (which I have a lot of! Probably partially because of how I wasn't allowed to be angry and learn how to deal with it). She's an "empath" so it means she can make anything about herself because it "hurts her so much". Neither me or my dad are allowed to feel any kind of negative emotions because she'll start to get defensive and act like we blame her for just literally fucking being a human with feelings. The whole getting defensive thing is also why she can't learn how to handle my behaviour, she cannot admit mistakes or that she could've done something better (I can't remember a SINGLE time in my life where she properly apologized to me). This whole situation just frustrates me even more and fuels my distress and SIB. I know that I'll have to work on it a lot and get therapy specifically for my anger if I'm ever in an environment where I'm able to properly express my needs. It frustrates me so much because I wish I could start to work on myself right now, but I just can't.

[@kynelson13]

I was literally picking at my nails right when Paige said it in the video. I do this all the time though so I love that things like these are being talked about.

[@Blairington]

I used to stroke my hair incessantly, until I actually gave myself something resembling carpet-burn under my hair... And I still thought my autism self-diagnosis when I was 17 was a mistake I later ruled out, only to later realise "I was right the first time"!

[@SharonL92]

This just made something click in my brain. I started out with SIB as a kid (like digging my nails into my arms until my arms bled when I got super stressed) and as I got a little older, I started finding ways to hurt myself intentionally, in a more controlled way, in an effort to hide my meltdowns. I’m just now finding out I’m autistic though. I was told I was bipolar at 18, but my psychiatrist figured out that I was misdiagnosed. I had never made the distinction between SIB and self harm though! Thats wild! Another dot has been connected. 🤯

[@MarszBarsz17]

I'm one of those people who engage in SIBs, and I have not been diagnosed with ASD yet, but am getting tested next opening we get. For me it occurs when stressors have built up throughout the day, so if one more small thing happens, I completely break down. Mine is usually scratching myself, banging my head, or punching things until I bleed. It can even be because I dropped something, or spelled a word wrong depending on how the rest of my day or week has been. It is nice to see it talked about, because I knew it wasn't SH because I wasn't doing it for the pain, it was out of anger and stress, though I never knew what else to call it. Thank you

[@TheRICKY85]

More definitely needs to be done about early intervention, it would be beneficial to governments that just see Neurodivergent people as burdens. Also, Neurodivergence should be at most a required unit for most health and education courses, at least an optional one.

[@FoxxyCandyFloss]

I'm a Social Service Worker in Ontario and I'd love to work with autistic children (or ppl of all ages) but I ended up leaving the field because there's no funding to provide meaningful changes to people's lives and that was making me way too depressed :((((( It is wonderful that this conference exists and I hope they can change that! (and yes, we definitely don't have proper training on neurodivergence in school)

[@kevingarzonromero9770]

As a kid I remember it was caused mostly when I was being scolded with a lot of intensity, specially by my mom. While writing that I remember the oldest SIB memories. I was a little kid in first grade, and because I was not able to erase red colour with an eraser I got super frustrated, started crying an dstarted scratching and hitting my forehead. There are other stories and reasons, but I'd rather not share all right now, based on them I believe SIB comes from frustration, at least in my case.

[@koalatea8126]

where my fellow cheek biters at? also, hitting myself in the head 😅 when having meltdown

[@tessaneko]

Omg ME my dentist was horrified 😂😂😂

[@koalatea8126]

@@tessaneko been there too :')

[@BrannaLaurelin]

Sorry in advance for the length of this comment. I'm a self-diagnosed autistic, but I hope my input is valid anyway. I have quite frequent meltdowns that almost always end up with me hurting myself in some way, usually by hitting myself in the head with my fist. I've also pulled my hair so hard it hurt, punched a tree so my hand got hurt (sorry tree), and once I ran my nails down my face and ended up with long red scratches which were really hard to explain away, so I needed to stay away from people for a while and cover it with makeup once I did venture outside again. In all of these instances, the SIB is not by choice - it just happens in a heartbeat and I have very little control over it. I can sometimes suppress the SIB if I KNOW I'm having a meltdown and that I'm not being rational (thanks to realising I'm autistic and working very hard to understand myself). However, it's so hard not to even in these cases. Sometimes I'll sit on my hands to prevent hitting myself in the head because I know I don't have enough inhibitory control to stop my own hands without physical restraint. It's almost like hitting myself is a stim and it makes me feel a sort of relief afterwards, even if my head hurts from the blows. I mostly have meltdowns as a result of a conflict (real or perceived, thanks to emotional dysregulation) with another person. I get to a point where I am no longer able to make myself understood, or the other person doesn't get what I'm trying to say, and I get so frustrated with myself that I either melt down right there (if I really trust the person I'm with) or flee (and then melt down once I'm alone). I can also melt down from sensory overload, which also usually results in me hitting myself in the head. Usually before the SIB starts, my thoughts start running in circles, irrationally blaming myself for behaving 'stupidly', for running away or saying something 'stupid'. That's when the SIB starts, in response to this self-reproach. As I mentioned, usually the harmful behaviour brings relief sort of like stimming would. However, it's something I really shouldn't do because of course hurting myself is bad even though it's not dangerous per se. I don't really have any good advice for stopping the SIB on one's own, but for me it really helps having my partner there to help me regulate. Being hugged firmly from the back REALLY helps for me, I calm down very quickly then and feel 'grounded'. It also helps having him tell me everything is alright and that it's not as bad as I think it is in my dysregulated state. Once I'm calm, he'll bring me anything I need, like my headphones, water or a blanket. Later, when I'm more or less myself again, we'll talk about what happened and sort things out if needed. But of course, this relies on having a parter or trusted person like a parent who is very patient, understanding and validating of one's feelings. And very sadly, not everyone has that. But maybe some parents or partners of autistic persons who may be reading this will find this helpful? I hope so.

[@tdesq.2463]

Very helpful. Thank You for sharing Your experience & insights. 🎼TD, Boston

[@jimwilliams3816]

I relate to your second paragraph so much. I hit myself because I am so frustrated that I cannot seem to make someone else understand what I mean, and ofttimes I can tell that I can’t explain it to myself either. I know that something has to change right now, and at that point it’s my head going berserk on me. So it’s a logical target I suppose.

[@tdesq.2463]

@@jimwilliams3816 Please, refrain from doing violence to Your head. If it's logic You seek as a proper guide, perhaps we could get it working for us.

[@skyec3418]

My main SIB is to dig my nails into my palms and, if I can’t get out of the situation, to dig into my arms as well. Although I’m generally more prone to dissociation and shutdowns rather than meltdowns. I have been told I am more of a “inward” autistic person, whatever that means, but I dislike how that implies there to be two types as if autism being on a spectrum is still being completely overlooked.

[@claytoncrawford3167]

Dear Paige.... Always a fantastic Vlog and informative... I enjoy listening and learning and so I am student at -56- ... Keep up the excellent work!

[@emilyclark6255]

I think people being more educated and guiding children to different alternatives. As an autistic and adhder adult, I big one for me has been my tangle toy, screaming into my pillow, having my partner guide me to a different environment in the house and putting music on that I love and colouring in pencils etc. I think most kids need to be taught how to regulate their emotions and learning about emotions, where they feels them in their body and connecting a need to those emotions. Something that has helped me as well is DBT. I still struggle to even identify my own emotions but I have now created a list of needs for when I’m at a level 10 of a meltdown. I can’t ask for them and may not even use them but having someone know and bring them to me or help me does make such a difference. But again, EDUCATION is the biggest thing as well as funding of course.

[@Catlily5]

DBT therapy helped me as well!

[@emcyrose]

me not knowing what exactly SIB meant and then hearing u define it as i’m in the middle of a SIB and feeling all of the things u described and then hearing an example u gave was the same SIB🧍 anyway ty for posting this - i’ve been kind of stuck in this on and off cycle of doing the SIB for the past 10 hours and learning about it being a thing at all and noticing how much of a problem this is for me helped me stop - even though it’s not meant to be harmful - it is - and i genuinely don’t know how i would’ve stopped without this video so again ty :’)

[@Con_blue]

I wish they posted this conference on youtube!

[@anaisdebeaumont9571]

I think one of the first distinguishable thing I was given a noun for that was something that other kids around me didn’t feel, was frustration, I recall that time my mom told me what that feeling was and it felt weird because why do I feel that? I got recently diagnosed and it’s thanks to you Paige and all the resources I could find on the internet because I live in France and it’s just an absent topic here. So I get to rethink about all the things that I did and got through as a kid and there’s so much little details. Like me not being able to remember anything from our school outings and not being able to write about it the day after. I had that teacher always mad at me because I wouldn’t write them and I also had a problem with punctuation, no signs of punctuation because I didn’t know where to put them. It caused a lot of frustration, I was at the time diagnosed not autistic yet but ADHD but honestly no one had explained me what it meant. So it’s interesting to be able to understand some things now. I have issues with standing up for myself and asking for accommodations but I hope one day I’ll be able to so what you do is very impressive thank you so much ❣️

[@johnbranch6430]

I’ve grown to think about my SIBs as ill-advised STIMs. I exhibited this type of behavior way more in my 20s and 30s, but they still pop up every now and then. My wife always used to attribute it to my ADHD, but when it became more and more apparent that I was also autistic, I’ve kind of figured out that the combination of ASD, boredom and idle time can be a dangerous mix. As I look at scars and bent fingers and such that resulted from playing with mousetraps, and misusing/playing with various hand tools, I sort of feel the invention of fidget toys may have allowed me to keep all of my fingers. Even though I've sort of matured, sometimes I still can't help but engage in dumb stuff I know can potentially hurt me. The goo thing is that since I've realized why I'm doing it, if I catch myself, I can consciously switch to one of my more conventional STIMs.

[@colleenvaught6829]

My diagnosis was received in 2021 at age 50. My parents raised me in ways that mirror ABA therapy…meaning they abused me in every way. Dad had rage issues and mom has a narcissistic personality (she refuses therapy or diagnosis). Therapists have incorrectly diag me in life as CPTSD, GAD and BPD…which will all sound familiar to any women with a late ASD determination. I have no access to therapy and am trying to figure myself out; but what’s being revealed the more I dig in, is that I actually have higher support needs than I was diag with. I don’t know how to feel about myself anymore. As for SIB, mine developed into micro-manipulation of my lifestyle or beliefs…and feelings of frustration or anger will disconnect me from the ability to control my body and I wind up smashing my hands and forearms into walls, doors, countertops and hurting myself. Anger flips to uncontrollable rage so easily for my brain. Just some different feedback on how SIBS can be. ☮️

[@jessie9539]

Ohhhhh wowwwww. I’m 99.9% sure I’m an autistic woman, misdiagnosed with bipolar 2 and anxiety/depression. SIB fully explains what I used to do as a child and teenager, It wasn’t SH. Any time I did it it was from EXTREME frustration with a situation or mostly my parents. My parents and all doctors just said I was insane and needed medication at 3 years old. I was just autistic.. autism explains my entire life for almost 25 years, and no one ever caught on because I’m a girl.