On the topic of violence or actions, that by those witnessing, appear violent, actions that harm another or oneself, there is one thing that stands out, one thing every single person who has physically harmed themselves or another person have all agreed upon, and that is the need for a self-appointed safe place. Not a place chosen by another, which can too often be seen as punishment, but a place that the person who is overwhelmed can go to, a place that feels safe. A place that is sacred, that will not be violated; a place that is a safe haven.
From reading the numerous comments, emails and DMs people have sent over the last few days, it is the one thing every single person has agreed upon. (If you’d like to read the other posts on this topic click ‘here‘, ‘here‘ and ‘here‘.) And interestingly, not only a safe place for the person who is feeling overwhelmed and whose actions are harming others and/or themselves is needed, but a safe place for all present, those who either by chance or because they are trying to defuse the situation, is necessary. A number of people have asked, but what if my child follows me or is breaking things and is a danger to themselves? Again a number of people answered this question with the same answer. They all said that in such cases it will take some time, repeatedly moving to a safe space, being followed, and leading them back to their safe space. Every single person said that talking, reasoning, arguing, placing demands, insisting that the person “use your words”, telling them to take deep breaths, demanding they count to ten are uniformly unhelpful, and in most cases, cause the person more distress and further upset.
Another aspect to all of this is escalation. Lots of people have described how they escalate or their child does. One wrote about a child who had 8 escalation levels and that “if he gets to 4, they’ve lost him.” They wrote that “most kids have at least 2 before they get to the attacking stage.” They described one child whose first level was so subtle, many did not even notice or pick up on it – a heavy sigh. Another parent wrote about a certain look the child gets, a stare off into space that they now know means they must get them to safety. All agree that catching it before things escalate is key. This is something Judy Endow talks about in her book, Outsmarting Explosive Behavior. She describes “the four stages of explosive behavior: Starting Out, Picking up Steam, Point of No Return, and Explosion.”
Ari, who is non speaking and has a blog, Perceptions, described in detail what things help and what does not. He wrote, “Am autistic and nonverbal. Never speak. Use devices with pictures mostly, but can type (sometimes). Have been violent. Usually only when people around me have problems below.
Problem #1. No one thinks to get one of my communication devices, switch to meltdown page, and put it in my hands to see if I could use it. Communication is hard. Some times I need be helped to use picture buttons. I have a page specifically for pre-meltdowns. It never gets used.
Problem #2. Blocking me, restraining me, pushing me into a corner, or otherwise making me feel trapped is not okay without my advance consent. Can follow me, stay close enough to see what I do or where I go, but let me go. Walking is calming. Non-autistics get to walk when stressed, why not me too? Trusted friends get my permission to touch my arm to guide me in safe walking direction. So much easier when there is trust and respect.
Problem #3. I hit myself, pull my hair, scratch/cut my skin, do other harmful things. Very rarely is done hard enough to cause serious damage. I understand it is uncomfortable to watch, but interfering will make me hurt myself far more. If you cannot bear to see this, leave and call someone else who can instead of interfering with my efforts to calm myself.
Problem #4. This one applies to everyone, I think. #1-3 may not be true for anyone other than me. Problem #4 is BELIEVE ME. Believe what I say about me because I am only one who knows what it is like to be me. If I tell you that you are wrong about me, accept that you are wrong and pay attention to what I say is right.
Problem #5. I admit there are times when I cannot calm myself, they are rare now but still can happen. There are acceptable ways to protect me (and others) from harm. It usually involves medication, thick soft blanket, silence, darkness, patience, and ice. If person can resolve #4 with me, I am happy to discuss #5. Otherwise… Energy is not infinite, left alone I will eventually stop screaming and fall asleep. There may be blood. I will not die. Ice for my head when I am done is much appreciated. This is when I am most likely to get violent towards others. I know it is scary. I know. For me too. If unsure of what to do, just stay away from me, be quiet, wait for calmness. I will look for help when I am ready.
#5 usually happens because of problems #1-4. It is best avoided.
Last time was about 1 months ago in a hospital waiting room. I am 31 years old legally independent adult (whether I should be is another matter entirely). I just needed to walk. Instead I was pushed into corner and trapped until doctor called us into private room. If had been restrained longer probably would have hit person hard. Probably would have been charged with assault. Probably sent to psych hospital again. This is not my fault. I can not fix this. But at least it has taught me self control. I can endure incredible amounts of pain/fear/chaos without reacting, now. I did not hit her.”
I asked Ari what he meant by “medication”. He responded, “Only medication now is ativan. Had haldol many years ago and it worked better for #5 situations. But not good for anything less intense, unlike ativan. Need better. But no doctor good with this. So get no help finding better. Need body sedation, sensory pain away, fuzziness from situation, to for logical thought processes work again so can calm self.”
He then added: “Broken logical reasoning ability. In those moments, no logic. Only chaos.”
A parent wrote: “People have seen it and have threatened to call the police (when he was five!) or worse. I really didn’t know what to do because he would get so upset and frustrated. People said to put him in therapy, but the thing I did that saved us was I put our whole family in therapy. We learned to communicate with him in ways he understood. We learned that we weren’t always right in how we handled it, and we often made things worse. We learned to find effective problem solving solutions (mostly following The Explosive Child by Ross Greene) It really made a huge difference and he rarely has violent meltdowns now. When he does, I have to step back and ask myself what was going on, was I not listening to him? Was I placing too many demands on him? Was I not allowing him to effectively self advocate? He always says to me that he doesn’t want to do it, he just is so frustrated and has a hard time communicating and identifying his feelings. We are still a work in progress, learning together how to understand each other. I KNOW he doesn’t like it when he is violent, but he is doing the best that he can with the tools we give him. I know this because he tells me, and because I was also a violent child. My target was my younger sister sometimes, but mostly myself. I was beyond frustrated and felt completely powerless due to the environment in which we were brought up. I know I am doing better with my son than what I grew up with, but there are times I screw up. I had to relearn everything I was taught about children, about communication and about respect. I had to learn that “noncompliance” is really just self advocacy and that it’s actually a positive character trait! That has made all the difference. I really believe that kids do the best that they can with what they have to work with. Kids who are violent are frustrated and need our help to find their voice.”
If any of you know of other blogs, articles that have been helpful or are writing something on this topic, please send the links in the comments section so I can include in future posts. I may need to make a separate page for all of this…
Safe space is a big thing. Other big thing: for adults and siblings alike to recognize and respect the safe space. When I was little, mine was under my bed-in the corner of my room. I would go there when I was upset, because it was the only place my parents couldn’t reach me. They couldn’t move the heavy steel-framed bed without risking hurting me, so they had no choice but to leave me alone. It was not the best place for a severely asthmatic kid to be going (what with dust bunnies and so on getting stuck there), but it was the only safe space that was truly safe, where my parents couldn’t get at me and where I would have the room and the quiet and the dimness to let myself calm down. They tried moving my bed to the center of the room, but they discovered that when they could pull me out from under the bed, I was a lot more likely to get violent with them, and so they decided it was probably the lesser of two evils to “let” me be “defiant” by hiding under there, since eventually I’d “get bored” and “decide” to do what they wanted (actually, I’d just calm down enough to think clearly and then be able to figure out what they wanted). Or they’d forget what sparked the fight in the first place.
My parents always said my room was a safe space, but that wasn’t really true since they wouldn’t respect my room. Nor would my sister. They would all barge in and continue bothering me when I needed alone time. But my sister was too terrified of the dark to go under my bed (under the bed is dark, after all, especially if your bed is in the corner of the room like mine was) and my parents were too big to fit but didn’t have long enough arms to reach.
When I got too big for under the bed, I hid in behind the linens in the linen closet. My parents and sister couldn’t find me. By the time we moved, I was big enough to wrestle away from them and run up a tree or to my cave in the woods – which I did. Even in winter.
To be honest, in my childhood, those safe places were the only places I ever felt truly safe, and where I was ever able to fully relax. Every where else, any time else, I always felt like I was in danger. Because I always had to be on guard to not be rude and not stutter and not look weird or “walk like an [ableist slur]” or not be a distraction or what have you. Even in my room or in other supposedly private areas, I couldn’t be too weird lest my parents barge in to see what I was doing and yell at me for spinning too much. If allistic people had even a shadow of a hint of a clue just how exhausting that sort of self-hypervigilance is, they would never demand it, nor would they begrudge those of us forced to do it our quiet recharge time.
This is something others have reported too, that though they tried to go somewhere safe, it was violated, making matters much worse. I hate that this was your upbringing. 😦
To be fair to my parents and siblings on this issue (I’m certainly harsh enough on them on others!), I don’t think they realized what was going on – my sibs especially. To them, I was the older sibling who was fun to pester because sometimes I’d give really funny reactions. My parents should definitely have enforced my room being my space to my siblings. My siblings were kids younger than me and so I think blaming them for following my parents’ example is unfair to them, really.
And as for my parents, they were being told from all directions, “She’s exceptionally bright, so she can’t have developmental or learning issues. She’s just spoiled. She’s just willful. Lazy. Defiant. Bored You have to discipline her more, because she has to learn that sometimes you have to do stuff you don’t want to.” Since there was no easy way to get a 2nd opinion where we lived for most of my childhood (far in the country – a second opinion would’ve been a 6-hr drive each way) and I seemed to do okay scholastically, I can’t really blame them for not seeking a second opinion because they didn’t know that exceptional academic talent and DDs are not mutually exclusive. They had pros in the fields of education and child psychology telling them they were and that I was a girl and girls don’t get those disorders anyway (I would be very surprised if the reported gender ratio in autism diagnoses has nothing to do with the fact that it’s assumed by some pros women/girls don’t get it).
Wonderful comment! I must be somewhere on the spectrum because I’ve always looked for “safe spaces”. When I was 5 or 6 one was up a tree where I could hide from my sister, and even now I live alone and love it…my entire house is a safe space for me where I don’t have to deal with the great world out there.
Thank you Ischemgeek for your enlightening comments.
Ha! Until all of us descend upon you! Thank you for sharing your beautiful home with us and welcoming us with such open arms whenever we come to visit. Sending love from all of us!!
… “hide from sister” is very familiar to me. I love my sister, but she’s as extraverted as I’m introverted, and sometimes as a kid, I just needed to get. away.
Two big things stuck out for me: “Believe me” and Ativan. (Sounds like a funny combo). There is nothing more infuriating to me than not being believed. It makes me absolutely crazy like almost nothing else can. People have set me off by provoking me in this way or not understanding and I quite literally see red. I cannot see anything else at all but red. It’s like being blinded by blood. I once picked up a chair in high school and threatened to throw it at my teacher because he was not taking me seriously. Sounds crazy, I know, but that’s what happened.
When I’m melting down and completely out of cope, Ativan works pretty well. I climb into bed, plug my ears, cover my eyes and go to sleep. I usually take a Dramamine also because I feel sick. So if Ari is reading this, try that combination. The Dramamine helps make me sleep. I only take 1mg of Ativan (I’m a very small person) but look into a higher dose or maybe Xanax and see if someone will help you. Because that feeling is so horrible and I don’t know how else to make it go away. It is so horrid.
Ariane… thank you for weaving together multiple perspectives that so consistently convey the importance of honouring and respecting others and their experience. I appreciate that you are so effectively facilitating this important dialogue and creating an amazingly informative and useful resource.
((Hugs)) and spoons and admiration ❀
Had a meeting this morning with E.’s school and mentioned your suggestion to make a key ring with laminated cards communicating various things. Everyone loved the idea. I’m putting together some ideas this weekend and they will make them!
Love to you, dear friend.
How wonderful they were so responsive and supportive! Yay! ♥
You’re doing such an amazing job Ariane. Being that person who people feel comfortable confiding in, telling their problems and ideas to. Parents and autistic people alike. And you are giving all of us a place to make our voices public, you are helping all of us be heard. Parents and autistic people alike. It’s more precious than I can put into words.
Yup! Exactly. And YOU have contributed so much, too, Autismcook! XO!
Absolutely could not have done this without such amazing people willing to share their experiences so generously and openly. You kicked things off and then Ischemgeek, feministaspie, monkey pliers, bjforshaw, Ashmire and you led the way! Really grateful to everyone who has commented. It’s been exciting to be a part of such a terrific discussion.
I would not have replied here if I didn’t know that you make a habit of making sure everyone gets a real voice, even if we’re saying stuff that’s hard to listen to.
I’m really glad you felt it was okay to comment. You have made a tremendous contribution to the topic and I’m incredibly grateful to you!
I feel pleased and somewhat flattered that my accounts of my experiences have been helpful to others. That is in a large part thanks to autisticook for linking to my post — without that I’d never have found your blog or been a part of this discussion.
This may be touching on another potential subject that could use some open discussion, Ariane. Meds, etc, are used and abused commonly in our society, and it would be great to shine a light on what acually helps some autistic people’s quality of life, and what is used and possible abused as a control, or medical harness, and what works, as Ari suggested, in an emergency. If an autistic person is constantly sedated, they may not be as much of a challenge to deal with, but they may be too zoned to function or experience pleasure. They may appear happier, when really are just in a drug stupor, but some can offer valid help to people, autistic or not. I spent years refusing antidepressants, which are the first thing a doctor prescribes for anyone showing signs of stress or unusual coping skills, but they are horrible for me. A very mild seizure med, in a very small dose, though, keeps me from stressing because I am not having constant tiny seizures from sensory overload all day long. It is like my highly sensitive sensory system no longer skips a beat, and I can take things in better. This eliminates a major source of stress and improves my quality of life. Autism is not a disease, and it should not be assumed that it calls for any medical intervention, but I feel a discussion of how meds are used and abused in autism, co-morbidly or not, may be a valid one. Another topic, for sure.
Bravo and big hugs for the great contributions by so many here, that are surely helping so many! ❤
This is such a great topic and one I haven’t seen covered. I remember when we were advised to give both kids benedryl on the airplane one trip because they both had slightly stuffy noses. My son fell into such a deep sleep I was terrified while Em bounced off the walls and couldn’t sit still. It was a long flight and I remember thinking how bizarre her reaction was. Only later did I begin to hear about atypical responses to meds within the Autistic population! Great idea Chou Chou! 💕
Reblogged this on life in the slow lane and commented:
I have been working on this area to share with the world of bloggers and found this. I really for all us parents it is a great read as well as having personal insight from others who have ASD. I hope you enjoy and gain in understanding.
Thank you so much!
Ariane, if I am repeating what contributors have already shared, I apologize because I have not followed the comments closely. With that being said…sometimes you can “head-off” the upset by providing the “known” sensory issues, such as space, noise, babies/toddlers crying/screaming, lighting, etc. When entering a new area, let the individual choose where he/she will feel comfortable.
Should a breakdown happen, do whatever your experience helped before, however, if the individual can share his/her thoughts with a communication device during the incidence, ask them for their help on how to avoid the upset and/or advice to help them through it by avoiding it. Usually this is tough because of the “rage” they are in…after when quiet, then approach them with your concerns. Keep your tone soft not threatening…wait until you both have quieted down before you chat.
Thanks Kendall, always love hearing your experience and suggestions. 💕
Like everything being said in your piece.
Particularly caught by: ““noncompliance” is really just self advocacy and that it’s actually a positive character trait!
Noncompliance is self advocacy: I’m going to work with that one.
Feeling safe in being autistic is key, I think. If others experience what you do in being autistic, as threatening or dangerous or otherwise out of order; then I think that sets things rolling that can end in what some will see as violence. So I Iike where Ari is speaking from, and what he reveals of his own person and being in so doing. He provides a basis for being alongside him and not doing the wrong thing; thereby optimising safety in events.
I love that too about noncompliance being self advocacy and had not heard it described that way before! I’m definitely going to be writing a post about that!
Thanks for your thoughts on safety. I agree!
Hi, I don’t usually chime in. I’m a parent of my 10 year old son who is non-verbal and has recently begun communicating on a letterboard. We used to get calls and letters from my son’s school about his violent behavior and their method of restraint. Those calls and letters have stopped since he has been able to express himself. Though he still gets into fits of aggression, usually directed to himself now, it has become less. Recently the expulsion of a child from Philip’s school for violent behavior made news in our local paper. My son had some very good insights on how misunderstood our kids could be and how the cycle of violence cannot be stopped with the methods used there. I’ve blogged about it here: http://faithhopeloveautism.blogspot.com/2013/09/philips-schoolmate.html
Thank you so much, Lisa. That is a terrific post. I particularly liked what Philip wrote – “THE TEACHERS SHOULD NOT ATTACK HIM.”
When I was in third grade a teacher hit her ruler on a child’s desk and broke it in two, some of the kids laughed, but I was absolutely terrified and have never forgotten that she did that. I can even remember her name and what she was wearing that day almost 50 years later!
This might come across as hypocritical or at least ironic given my recent post about my violent meltdowns, but I am also terrified by displays of aggression and violence: this comment reminded me of one of the teachers at my school — thankfully not one of my regular teachers — who used to carry the bottom 2″ of a snooker cue around and hit it on the desk to gain the class’s attention. He took one class when my regular teacher was absent and I still have a vivid memory of freezing in fear when I heard the bang of that stick on the desktop…
Oh how I can relate to your reaction. I self injured for many, many years and was aware of how it was rage turned inward. I wonder actually that there isn’t a correlation between our terror and the rage we also feel.
That’s a very interesting thought. There’s certainly an element of fear in the feeling of being trapped or under pressure that brings on my meltdowns. Hence the need for a place where I can feel safe: an instinctive flight reaction to threat.
The whole fight/flight aspect is coming from the same source (one of fear, at least this is how I have come to understand the concept) it is just how one reacts to that initial source of fear that differs, but the fear is felt by both. So I’m wondering for those who do not fight, do they not also feel tremendous anger, even if it is a delayed response, even if it is turned inward? This was my experience, at least, I did not fight, or at least I stopped fighting at a certain point. For years I believed I was void of anger, until a shrink I was seeing stated that my self injury WAS anger. Just anger turned inward.
I will have to deliberate on that. I believe I might exhibit symptoms of turning anger in on myself — if self harm is an indication of that. I haven’t ever connected it with anger because it doesn’t feel like outward anger. I feel an urge to investigate further.
I can’t take anti-psychotics. They considered me violent once when I accidentally kicked a nurse while trying desperately to hold onto a toilet in such a wild panic I couldn’t tell one limb from another. It stayed on my chart for decade.
They consider the dire situations that need medicating those were I lose the ability to communicate. I am not sure about the medication then. Being left alone in a safe place and just checked on from time to time would do as well but in a hospital situation they want things to end fast. IM ativan will do that.
These situations are always avoidable but trying to get anyone to see where they went wrong after the fact is hopeless. It is always you and your autism and while some might be sympathetic it will be to that effect not to the unwillngness of people to look a what led up to bad situation.
Hoping that the more this is talked about openly, the more understanding there will be. Mine is just one blog, but with more people writing and talking perhaps it will change. At least this is what I hope.
The best thing that has helped my son with his escalation issues is the medication clonadine. He was on no medication prior to adolescence. Adolescence seemed to exacerbate his agitation to an unbearable level. Clonadine is pretty benign and used for high blood pressure. It is also used to stop the adrenaline when escalating. When I see my son’s face get red and he starts to rant, we will give him a low dose of this medication and within 10 minutes he has subsided. Safety is a huge issue. My son is 6 ‘3″ and 205 lbs.
Thanks ! nice post !
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bjforshaw – I hope you’ll tell me what you’re thinking about all of this. I have to slightly amend my previous comment because I don’t believe that self injury always is a result of anger turned inward. I wrote a couple of posts about SIBs and learned that many, particularly Autistics, self injured because of sensory overwhelm that had nothing to do with anger. It was more often about trying desperately to self regulate and cope. For me, it was more often anger turned inward, though I think one could also argue that there was an element of sensory overload contributing and certainly an extremely sensitive nature may have contributed to the self loathing (at least for me.) Would love to know your thoughts and experience though, either here or by email – firstname.lastname@example.org if you don’t want to go “public” with your thinking.
I’m on the case but will need a bit of time to gather my thoughts. I’ll get back to you on this one…
My thoughts about SIBs… well, here goes:
I went through a spell in my early 20s where I would cut myself. I was living away from home for the first time, attending university, and I was not coping well. I was feeling lonely and out of my depth: I was awkward socially and didn’t feel that I fit in, and what I now know to be executive function deficits made living independently a huge challenge. It also made the degree of independence expected of university undergraduates with respect to managing their studies a big challenge: for me the rigid structure of school education where every day was filled with lesson after lesson was perfect, although I always had issues getting homework done when left to my own devices.
To cut what could be a long story short — I’ll write about it in detail one day but not right now — I was failing my courses: missing lectures, lab time and supervisions (what they call tutorials outside Cambridge, England). I had begun to drink heavily — my first means of harming myself — as a coping mechanism more than anything else. I was depressed, had problems with anxiety that I still suffer from, and hated myself for being unable to cope, for failing, for getting drunk every night, for not being able to make the kind of close friendships I saw all around me.
In my state of mind I considered killing myself. No, it was more than consideration: I calmly sharpened a knife, sat down, removed my watch from my left wrist and made a small cut. I’m uncomfortable admitting that it felt good. It felt really good, as if I was releasing the pain of my feelings. It wasn’t painful so much as a feeling of sharp clarity bringing my mind into focus. I did it again, just a short cut of about an inch, through the skin but not into my veins. And again, then on the other wrist. I was enjoying the feeling: I felt that I was in control for once.
That was the first occasion. There were others. I believe it was a reaction to overload, to more stress than I could handle, to feelings of failure and low self-esteem. I can’t say whether I felt anger — internalized anger. I can say that I was self-destructive and that I have always internalized my feelings, at least until I explode into a violent meltdown. And I can also say that the cutting helped. It brought a relief from the intensity of my emotions, a distraction from my troubles.
It also brought shame later on. It was sign of weakness, another sign of failure. The marks on my wrists were a visible reminder. And I was ashamed that I wanted to do it. I believed — because that was what I had been told — that it was wrong. That “normal” people didn’t do things like that. And I wanted to be normal, to fit in. Even my coping mechanisms were causing me additional stress.
I don’t cut myself any more. That behavior stopped after I left university — dropped out. I was away from the cause of my distress and no longer needed to escape from it. I was back in control, back home in a safe environment. But sometimes I still become tempted to go fetch a sharp knife when I’m feeling overloaded and away from any place I feel safe. There is a desire to feel that release again.
I’ve gone on at some length here — I am going to publish this on my blog as well. I hope it explains my experience of self-harming, how it started and why it stopped. And why I am never that far from it even today.
…and the same account posted on my blog here.
You saw my comment on your blog… I really get it. So completely. Yes, you described exactly how I used to feel. It’s a horrible cycle to get caught up in. I know it well.
I’m happy to say that the bulimic friend I mentioned in my reply to that comment is doing well with her counseling — 8 months into it now. Sadly it took the death of a close friend to spur this friend into seeking help to break that cycle. I felt honored that this friend had felt able to confide in me after reading what I wrote, and trusted me to understand. I believe this demonstrates the value of speaking openly about such subjects.
Oh that is good news. Bulimia and anorexia are really difficult to treat, the behavior becomes so intrenched, it becomes a way of life that is often tough to break out of. Glad to hear she is better. What a wonderful friend you are!
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This is a fantastic article and resource. Thank you for taking the time to do this.
I’m interested in hearing about other psych meds as well, specifically anti-psychotics such as olanzapine, risperdone, quietapine… especially the latter as it has mood stabilizing characteristics, similar to the “low dose of anti-seizure meds” that we use for mood stabilization in Bipolar disorder, for example (Epival/Divalproex and the like). That way I can help incorporate this data into my practice.
So I wrote a post about medications following this series..https://emmashopebook.com/2013/09/17/in-answer-to-medication/ and the first post asking for others to write in with their experiences – https://emmashopebook.com/2013/09/16/to-medicate-or-not/
Not sure how helpful it is from an actual medical point of view…. but it seems everyone had to try lots of things and many different things or combinations of things. Also one person emailed me about Buspar, which I know absolutely nothing about, but it was the only thing that has really helped her and her child.
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Thank you, Ariane, for hosting this discussion. Thank you so much to sll th people who participated in the discussion. There are so many helpful comments here.
Thanks Dixie. It’s been fascinating reading everyone’s comments.