Our year continues with more trouble in school. Nemo still has daily support (the new aide is kind and calm) and they have now been willing to trial a few preventive solutions I have put to them (quiet lunches, respite days), but his current reflex to swear and get angry (at least that’s what it looks like) in situations of stress, is taking a bit of a toll on the ‘support team’. On me too, to be quite honest, but since things are rather chill at home in terms of expectations and environment, I simply do not have the Rumpelstielzchen experience on a daily basis, and there is only so much I can do when he is in school. Needless to say, that we do NOT swear like sailors at home, we do not condone it at all and I understand the school has to draw a line…But I still believe that the use of swearwords in moments of distress does not prove he is making the conscious choice to be ‘naughty’ or whatever?! Will be really thankful for any input…
(autism) comics by suburp 
Hi Suburp! How are things going with Nemo this week?
The meeting with the school went better than expected, sort of. I did go into it very prepared, and they seemed more open than in some past meetings. But after the meeting was over, they showed me in big and small ways that they still don’t quite get it. It is a long process, I just have to not get discouraged.
I scheduled a Sensory Integration Evaluation through the PT/OT clinic at the University for next week. Got to get a handle on the sensory issues and the fear/anxiety (which are still escalating). I feel so sad seeing him struggle with these big fears. Last night he told me very clearly that when he gets angry and upset, it’s because he’s SCARED, that the fear and anger feed off of each other, that he wants to hurt people when he’s angry, that he’s unable to control his thoughts/actions when he’s angry, and that it makes him feel unbearably sad that he wants to hurt anyone. AND he’s terrified that I won’t love him anymore if he hurts me. He’s sobbing, asking me if I’ll still love him even if he pokes my eye out! What’s most upsetting is that the adults in his life still think he’s lashing out on purpose, and that he should be able to control it, when the reality is that he’s scared as #%*€ and is fighting as though his life depended on it. Why would he hit me or kick me ON PURPOSE, then cry uncontrollably while telling me how scared he is that I’ll stop loving him if he hits or kicks me, and how horribly sad that makes him feel that I might not love him anymore? I mean, does that make sense?
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Yes, makes perfect sense to me. Removed from the situation, and after a bit of time, too, my son has great insight in what happens with him and even how possibly others are feeling. It just doesn’t work on the spot and ‘count to 10’ isn’t helpful advise really.
I also know what you mean with ‘they still do not get it..’. Sometimes even well meaning professionals are so disappointing when they cling to (often obsolete) textbook knowledge on autism.
We had a bit better days with lots of preventive respite, quiet lunches and I (not very comfortable with medication really) actually put Memo on a low dose of Valerian (its a herbal mix actually). It seems to have broken the circle, he did not swear although there were incidents that were stressful this week.
As for ‘professional fail’ .. We had to put our very old family dog down yesterday. Nemo has grown up with her. I told the key people in school and they were really good..but one seemed basically surprised he had any attachment to her at all.
We could fb friend each other if you like?
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Yes, let’s FB friend each other. I don’t know how to PM you my name, though…
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I am going to overhaul my site and put contact form or something in as soon as I have a proper pc again (warrenty case right now) hang in there. Or if you want message me on the fb page for this blog (which I am not maintaining ATM but should still get the message then I can friend you w my personal account if you want) complicated! But am a bit protective w my privacy lol..
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Now I see your Suburp FB page and “liked” it. I don’t have a FB page for Spellitaut, just my personal one. I understand about privacy! You’re welcome to friend me (assuming you can see who is following you on FB?) but if you’d rather maintain your privacy on FB too, I totally get it.
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Can you message my page or leave a comment? Not sure where to see my page likers via my phone right now…(my pc is in repair. Sucks.) 🙂
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Sure thing!
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I’m sorry about your dog. That’s hard. I hope Nemo is dealing with the sadness okay. And I’m sorry that adults can be so ignorant, especially the ones whose job it is to know better….
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huh. interesting.
“Studies on brain damage affecting the language areas of the brain have found that some people who have lost the ability to speak, or struggle to form words, can still swear easily. This is thought to be because swearing is processed in a different area of the brain.”
http://raisingchildren.net.au/articles/swearing_school_age.html
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The fight-or-flight response is just that: when triggered, both options are equally likely (and perfectly illustrated by your comic).
When I feel afraid, my fear immediately turns to anger as well. For me, cursing is actually the safer outlet. Safer than wanting to kill people. So yes, on the surface I may seem violent or aggressive. But it’s all fear.
Because Nemo’s fight response is a new behaviour, I don’t think it’s far-fetched to say that there is a trigger at school that made him believe fight was the only option left to him. He’s being TAUGHT that he can’t flee, or that he can’t show his fear. So he turns to cursing and kicking. Your school team will probably argue against that, but it is still taught behaviour. It’s his way of dealing when all other avenues have been closed off. He’s being taught that he’s not allowed to take other ways out. And now they want to close off that last avenue because it’s “unsafe” behaviour. *sigh*
He needs a way out. Maybe a separate classroom where he can work on assignments alone when he’s getting to the point where he starts cursing. It would have to be framed as a solution, not a punishment. But at least it would take him away from the situation that’s causing him to lash out in that moment, and it would keep the classroom quieter. Maybe they would be amenable to that.
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insecurity and fear also makes me angry at times, but i tend to go really quiet at first (re ptsd).
i understand what you mean, though, and i felt that the swearing was somewhat inner conflicts (flight or fight?) and loss of control.. ? I see what you mean, too, that he needs at least one option open..While they got frankly pretty ‘pissy’ pretty soon about those swearwords, we have all agreed and explained to him that he CAN still move away from any situation of conflict or crisis as long as he stays in sight and tries to also come back when he feels better. had discussed this with the class room teacher from the start. i believe what really happened then was a combination of adjusting to a new teacher with new dynamics in a new class (lots of new..) and no direct aide in the first weeks, but a chef of Special Ed Dept who would swoop down on him only when there were problems. As you said, so their building and staff became a punishment really.
I was then (after multiple incidents and suspensions and more incidents) invited to see the principal who was ..well, impatient, lets say – but I came prepared to the meeting and actually requested that Nemo could take his lunch not only by himself but somewhere where it’s really quiet – to actually recover from the less chaotic but still stressful class environment (23 kids “ONLY” – yay?) They argued that he didn’t like having his lunches at the SpEd last year (only permanently staffed place), but didn’t realize that 10-15 kids with special needs around you wasn’t really much of an improvement on being in an echoing undercover area with about 200 happy and loud kids when you have sensory issues.. (Last year, I was also still hoping he would actually connect with the other kids during lunch, and then just naturally go and play with them, too. I have now realized that above all, we need to reduce his stress. Am working on more playdates after school..)
It’s all still fresh, he now eats in a quiet spot on a deck, facing trees, then is allowed to sit & play – with his tablet! which is of course why he agreed to the whole set up – on a couchie with headphones. They even have a room divider shielding him from the others. He is loving it.
Now the effect was not instant on all days.. today went really well, and we were all happy faces, including teachers and SpEd staff.. hoping for things to get to some sort of cruising speed..
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That lunch spot sounds DIVINE. I would have loved to have that at school.
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I went to see it on the second day to check what it was like. It seems to really please him, not only for the tablet use. And no extra staff or supervision needed from the school side so it could really be win win win..
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Yes, this!
Definitely.
And maybe work with him on appropriate scripts to use in class when he’s upset/scared/what-have-you? Like “I can’t do this right now.” or “I need quiet” or “leave me alone!” (to other kids, so teacher knows to help him separate himself – am I right in guessing that the bullying you mentioned in a previous post is connected with the cursing issue?) or stuff that he’s likely to be able to say when on verge of meltdown but that won’t offend the teacher.
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from what i know, in the new class there is no bullying/teasing issue as such, but some kids are a bit bewildered, they just don’t understand what’s going on with him, and why he gets so upset.. it’s school policy to only talk about ‘difference’ not actually educating about autism.. some kids have shown they care for him though, that’s heartwarming, they help him to remember things and are just generally kind. Those swearwords come out in situations of overwhelm and frustration, translated they really mean : i cannot deal with this and i cannot tell you (so i swear). we are now talking about short things that could take their place, he has managed 2 days now without swearing (although he got upset sometimes), the teacher also things we could find a ‘codeword’ (script something) for him. at the moment it’s all a bit of a reflex.
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Code word is probably a good idea. Maybe code signal if he can’t make code word happen, too? I don’t know how much trouble Nemo has with making words happen when he’s in meltdown – I know I used to curse in meltdown in part because those were the words I could make happen.
Also, maybe instead of/in addition to punishing for swearing, school could try rewarding for not swearing while upset? Cuz I’m sure that takes a lot of self-restraint on Nemo’s part, and it’s something you probably want to reinforce. Like, “I could see that you were really upset, but you didn’t swear! You did [thing he did] instead. That was a good, keep it up.”
I do that w/ kids who can be a bit distracting to others when they get bored in stuff I teach (mostly the youngest kids, who don’t have the attention span to stay on the same thing for as long as we need to with the older kids – we try to balance teaching styles, but sometimes you have conflicting learning needs and you can’t fill them all at the same time – older kids get frustrated if we change every 10 minutes, but younger kids get bored if we stay on the same thing too long, and we don’t have enough instructors to do both at the same time): “I could see you were a bit bored that we kept doing the same thing over and over, but you didn’t bug other kids, you just fidgeted quietly in your spot instead. Good job!”
The other thing I find useful but don’t know if Nemo would want to do it is chewing on something when I’m upset – gum doesn’t work because it’s not hard enough, things with the texture of teething rings work quite well. I don’t actually want to eat when I’m upset (and besides, I have a health condition that means I’m not supposed to eat sugary candy), so gummy candy doesn’t work for me. Often, I end up chewing lightly on a knuckle, but that’s obviously less than ideal and probably not something you want to teach him to do. There are sensory bead necklaces and bracelets that are made for that purpose, but I don’t know which brands are the best because I’ve never tried any. Having something to chew on is also a lot better for your teeth and jaw than clenching or grinding your teeth, so there’s that aspect.
Alternatively, pressing my hands firmly against my lower face and/or eyes (I did eyes as a kid, now that I wear glasses, I do lower face instead so I don’t gum up my lenses) is often calming, especially if my hands are cold/cool. Again, I dunno if this will help Nemo, but it might be good as a calming thing and also as a signal to the teacher that he’s getting overloaded.
I’m just spitballing ideas – I hope you find some of them useful.
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I do find them useful and I have to say the teacher dies the whole positive reinforcement thing quite well. I did extra rewards & treats after school and we talked about how much better the day went when he managed to control himself, removes himself from class and can join back in when he feels better (instead of the escalation for those 2 words he uses…) He is allowed to go out, even run without words, just needs to stay in sight of teacher or aide.
Chewing is a thing, we have to shop around for, I encouraged him in the past to chew certain objects rather than his collar (…) but he seems to chew through everything now so need fairly durable stuff. Will trial a few, seen them online..
I did buy some Valerian (herb extract, combined w others typical in a calming mix), and have started him on low dosis. I am not keen on actual psychopharma medication at all but this helps me temporarily in crisis, too, and it does not make you drowsy or weird normally. (watching him closely)
I am really thankful for ideas, it certainly helps to hear other’s experiences and opinions 🙂
What do you teach? Can you tell?
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Martial arts, and sometimes I TA uni-level chemistry labs or do science outreach w/ kids. But the thing I teach on a regular basis is martial arts as a volunteer thing.
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autisticook, I read your post on fear last night and it sounded oh so familiar. R tells me he’s afraid of everything, and that once he thinks a scary thought he has a “chain reaction” in his head and can’t stop thinking about bad things. He has mundane fears, but also an unstoppable existential dread which is so painful. He’s afraid of dying, afraid there will be nothing there when he dies, afraid of something bad happening to us or to things that are important to him, afraid that the Universe will end billions of years from now… He used to love space, but he asked me to take down the image of the Hubble Deep Space Field that I had as wallpaper on the iPad “because space is too scary.” As for his experience at school, I think it’s absolutely the case that he has no escape from situations that are overwhelming. He’s having a lot of trouble in music, and his teachers know this. Their solution is a “reward” system where he loses stars if he acts out in music. If he keeps all the stars, he gets iPad time. In the meantime, he’s stuck in an incredibly loud class, is not only expected to stay there, but to somehow reign in the very things that help him self-regulate, and is punished if he slips. No goddam wonder he’s hitting. Anyhow, I don’t know what we parents would do without Autistic adults like you to help us understand what’s going on with our kids. I feel like it’s my only hope in getting other people understand, and for that I’m truly grateful.
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It’s a never ending cycle sometimes. I’m so glad that parents like you are engaging people in conversation about what it’s really like for your children. Hopefully together we can create a world of understanding so our young ones don’t have to struggle as much anymore.
Because it is such a struggle. Especially the fear. Researchers have discovered a couple of things about this, including the fact that autistic people seem to have a quicker response to movement than neurotypical people, and an enlarged amygdala (the seat of our flight-or-fight response). Which basically means that we get triggered more easily, and our adrenaline and cortisol reaction is more intense. In that biological situation, anxiety is a way of life. They don’t know whether this is something we’re born with, or whether it’s a response to a sensory overwhelming and socially confusing world, but the fact remains that our systems are flooded with anxiety hormones at the drop of a hat.
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Yes, I wish I could get my biologist husband to understand the fight or flight / fear /crushing anxiety / enlarged amygdala aspect of all this. I’ll google the studies you mentioned – perhaps he’ll take his fellow biologists seriously. R definitely is sensitive to movement. He thought my arm swinging slightly at my side was waving wildly about, and he’s very disturbed by what he calls “animations” – little movements like chewing that other people do that can be cause for meltdown.
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From http://www.sciencedaily.com/releases/2013/05/130508131829.htm
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The best one I could find on the amygdala is http://www.psychologytoday.com/blog/the-athletes-way/201311/the-size-and-connectivity-the-amygdala-predicts-anxiety
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Thank you! I did some googling and found a few interesting articles, but none I thought would withstand his scrutiny (is it in a reputable, peer reviewed journal? Is it less than 10 year old research? etc). This is relatively new, and linked to original journal article. I’m at such a disadvantage when trying to make an argument about science with a scientist, I have to be careful about what I bring up, and what articles I use to back up my argument. This is perfect.
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=) i love that we are having this exchange following to the comic. 🙂 your know how much i value your input.. i believe i have read that article, or say about this research sometimes, will read it again. today went sort of ok, well, something happened but he was ‘just scared’ , but didn’t swear. (still processing that, they could have avoided the situation with common sense)
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i know about these fears too.. damn Mayans with their end of the world 2012 prediction (that wasn’t) and all the media reports on it with apocalyptic footage, even when it was meant as a joke… hey, i hope your meeting goes ok, let us know what happened? x
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I know how that feels being an adult with Autism, and having been put in that same position myself. I ended up giving myself cognitive behavioral therapy from watching horror films, which gave me the validation that it was completely reasonable for me to be frightened by the situations I was put in during school. Of course this is not for everyone, but it says something that only the horror film industry helped me realize I wasn’t perceiving things wrong from my perspective. That it takes a good understanding of fear to appreciate it in others.
I know many people want to see horror film creators as evil, but in a strange way they empathize more with people, because you need to understand what makes someone scared to make a scary film. For example like Nemo I felt trapped in class when I was overwhelmed, and convinced I was getting upset over nothing. One of the biggest fears played upon in horror films is being trapped and helpless, so that says I wasn’t getting upset over nothing, I was reacting to what felt to me like being trapped in a room with no way out.
I wonder if this perspective might help teachers understand Nemo and other kids like him more. I remember how a scene from Texas Chainsaw Massacre where a girl was tied to a chair and the guys who were holding her captive were laughing at how frightened she was. That’s exactly how it feels to be made fun of by classmates, or being told not to act out by a teacher feels during a meltdown.
I would hate for people to say it’s Autistic people suffering, and why we need to find a cure. I just want people to understand yes it’s that frightening for us, no that doesn’t mean we want to be cured from our Autism. I’m saying this in case anyone reads this and attempts to use it for the cure movement. We don’t say cure neurotypicals when they express fear, we understand their fear. That’s what I’m saying, just accept people with Autism may experience fear more intensely than you. If you can accept a neurotypical person being highly sensitive, you can appreciate this as a part of Autism without wanting to cure Autism.
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Pingback: Socially-acceptable cursing and how not knowing how to curse started me toward self-diagnosis | ischemgeek
I used to curse up a blue streak in school in what I now recognize were meltdowns and the wind-up to them.
As a cautionary: Be careful that they don’t try to teach him to never curse, because that stuck for me and then I was expressing my anger with stuff like, “Verily, I yearn to defenestrate that work sheet! Its uselessness is of brobdingnagian proportions!” because standard words didn’t feel angry enough. And, to this day, my words become more arcane and more kind of jargon-y (can’t think of a better word for it right now – when someone does stuff like use “utilize” instead of use) the more angry I get until I hit meltdown threshold. And, uh, yeah, being a kid who uses “defenestrate” and “brobdingnagian” with a straight face and makes teachers have to reach for dictionaries does not win a kid any more friends (not with the other kids who think they’re a weirdo or with the teachers who get angry that the kid knows more words than they do). than cursing up a blue streak.
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^Also note that because parents/school people told me to never curse, I had to be taught socially-acceptable cursing in university by my friends. Which was actually one of the things that led to some of my friends asking me if I was autistic, which led eventually to my self-diagnosis, which I guess worked out for the better in the end, but it’s kind of awkward to be a legal adult who has no idea how to curse properly and has to ask how it’s done and get the stares and the, “Haha, very funny! Oh, wait, you’re serious.” type comments and so on..
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lol, you are funny, but hey, at least you had friends that were ok with your weirdness and taught you all the good bad words ? 😉 worth a lot!
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lol.. yeah, i had told him to say ‘freakin” during the holidays, but turned out that’s also not allowed..i also was extremely amused and quite pleased when he said “Oh- Schnitzel!” when something went wrong one time, but he doesn’t want to be “too weird” (and he’s not so keen on speaking German sadly..) so that didn’t stick either. so since i am not a native speaker, i find it sometimes hard to gauge the level of ‘badness’ of a bad word – or let’s say I know the really bad ones, but not the ones that old ladies and children use, if that makes sense ? (like ‘fiddlestick’, just googled that to be sure. or fart face! haha, yes?) Lol at confusing the teacher with words they don’t know. =D
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I dunno about Australia, but in Canada, “flipping” is generally inoffensive as a euphemism. Also “darn” and “heck” and “shoot” and “fudge”. Someone I know adopted, “Oh, fu-udge muffins.” to stop modelling cursing around her girl who was getting into trouble at school for dropping the f-bomb. XD
Unless the school has a “no cursing and no euphemisms for curse words” unspoken rule – maybe you should talk it out with them to see what is acceptable to give him school-appropriate frustration/anger/hurt scripts?
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Yeah, I think you are spot-on , it’s not very clear rules apart from the really big words and at the peak of it, he got told off for ‘ohmygawd!’ (the teacher actually quoted the resp. commandment first then corrected herself to a ‘out of respect for religious people’ kinda explanation. I can just about accept that in a state school but seriously, I find it all confusing myself!) “Hallelujah” also is not allowed but thankfully, he is now using “Eureka!” instead..lol (obviously correcting interjections for positive emotions and incidents is a bit easier for anyone..)
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… the latter part strikes me as him maybe getting singled out/identified/perceived as a “problem” w.r.t. cursing, so any exasperated exclamation he uses is more likely to get admonished? Either that or he has a v. religious teacher. Or both. The first part happened to me in school, and at the time, I found it completely bewildering that I was getting told off for “Oh my god” (and at the worst, even “ohmygosh!” and “geez!”) when other kids were saying it with impunity, and even the teacher would say it in front of the class.
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I’m not sure this is just as autism thing, as it’s common with other young males with limited ability to express emotions – I’m talking ADHD ( I have an older son with this) and even some young men who are poorly educated. Lacking the verbal resources to communicate what they’re really feeling, they resort to lashing out verbally (swearing) or physically.
My son with autism swears at home but has been able to keep a lid on it at school thus far. I think it’s because of the impulse control that comes with his ADHD medicine but I’m aware that’s a path you’re reluctant to take. Good luck. x
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Oh, yes, I imagine it’s not only autism specific at all. Nemo started using the swear words sometimes last year when a boy with add, ADHD and Odd (dx) was acting like this. I am not blaming the boy, he had obviously a lot on (and is much better now from what I know). Nemo himself has been dx by one professional as having “elements of ADHD and ODD” but it was never further explored. I see it as an expression of loss of his otherwise very rich language in times of crisis and a bit of a reflex now that it’s almost ‘expected’ from him. Today he got upset but managed to NOT swear, and was really happy himself (and got well rewarded too), so I am hoping we are going in the right direction. I am giving him some low dosed Valerian (w other herbs) as a trial now. It works for me, temporarily, for general stress and anxiety. We’ll see. This post was mostly about my observation how one element – swearing or hitting – can pretty much swing the attitude of your ‘support team’ around. That’s a bit harsh to realise 😦
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Having a similar experience (substitute ‘hitting’ for ‘swearing’). I maintain that he is having a fight or flight response to sensory overload. Both hubby and team are talking consequences rather than supports and accommodations. We meet day after tomorrow, not looking forward to it at all.
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The principal made big eyes, the special needs lady had to admit those were real important factors.. If you don’t have one, and are not sure about what is causing stress, imagine yourself on a day after a sleepless night, with a headache and cranky – in a classroom or school yard with all the action around you, and (possibly), no one really engaging with you.. And probably no real possibility to focus on just one or two voices. Sensory hell on a bad day.. 😦
This all said, we had a full good day today (quiet lunches w tablet time & headphones), and he really enjoyed school today, so we are noe celebrating!! =D
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Yes, what I think I need to do is have an OT from outside the school do a sensory profile, and give a list of possible accommodations. The school OT assigns him these little sensory exercises involving (for example) slips of paper, that aren’t effective, and that he resents. What he really needs is to bounce or swing or do some sort of BIG activity. He already comes home for lunch, and that makes a difference, but not enough to offset the sensory stress and anxiety from the rest of the school day.
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sensory exercises are all very good, but if he is under acute sensory stress, i hope they are open to arrangements to actually prevent it? i am sure he knows he shouldn’t hit anyone but he must feel cornered, see all the other comments here too.. i mean i really felt that in our case, the school, through the swearing were kind of set on punitive measures, but i think me coming into the meeting demanding them to help with prevention and telling them what I think could concretely help and why – it almost surprised them a little… i really recommend you to sit down and think of a few scenarios that happen daily, or just before the incidents and try to find some sort of alternatives to how it runs now. it’s ok if you don’t know what will really help but they have to at least consider some of your solutions and it might actually inspire them to come up with something too ? 😉
if you can have an independent OT, go for it, I thought ours was really good, very thorough (through the school district). she had a lot of ideas and remarks that I never thought about.. which accommodations will eventually be put in place depends a lot of the willingness of the mainstream school, their experiences, available staff or equipment and so on, i think.. really all the best for you and your little man!
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The team is not all that open to suggestion (nor is my husband). I’ve been trying to explain it to them for almost 3 years now, to no avail. There’s an autism “expert” at a nearby college (actually my husband’s university) who has a LOT of influence, and who I’ve seen engage with Autistic people online in a way that suggested to me that she “gets” it. Anyhow, I’m hoping she can help me. I’m meeting with her later this month, and attending a workshop of hers next month. I feel the school is no longer listening to me, and they need to hear it from someone else… I will try at the school meeting tomorrow, but from past experience I don’t think it’ll go over well. Not giving up, of course, but I think it’ll take time and the influence of other people to really make a difference.
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