Not Stimming is MORE dangerous than you think...

when did you first start editing your stemming did you get to an age where either consciously or subconsciously you adopted stems that were less obvious but also maybe less effective if you did reduce or change your stemming as you got older did that change coincide with a drop in your mental health I've spoken about it before but I think I must have been really young when I first started suppressing the urge to stem until I was 3 years old I was at home with my mom my stemming was always see as Quirky and creative and unique and everybody in my life knew about it and nobody minded it everyone would let me flap away even if that meant I would be kind of lost in my own world sometimes and I wouldn't always respond when spoken to when I started going to nursery for a few days it was quite a big shock to me I had this overwhelming feeling of just not knowing what I was supposed to do and not knowing how everyone else around me seemed to know exactly what to do we were told quite sternly that we needed to cross cross our legs when we were sitting on the carpet and I didn't know how to cross my legs I would find a spot at the back of the group and I would sit with my legs stretched out in front of me and my little heart would be beating and I'd just be hoping that somebody wouldn't call me out on the fact that I wasn't sitting correctly cuz I just had no idea how does one cross their legs and how did everybody else know how to do it and as you might guess I wasn't particularly good at socializing with the other children I've been fine with my cousins who came around to play a lot the oneon-one or like small group interactions with people who knew me really well were fine but this big group of strangers running around screaming was something else entirely I remember this one time when they were playing with one of those parachute things where all the children stand around and and they lift it up and they roll balls around on top of it and they crawl underneath it and all that stuff and I remember just walking around on my own I would just walk around the perimeter of the playground and I assume I flapped my hands because I was lost in my own world and usually when I was lost in my own world like that I was flapping my hands and I felt like I was watching the children and the staff members who were playing from behind a sheet of glass everyone just left me to it I suppose at 3 years old I was young enough to be allowed to do things that were a little bit strange maybe it was just seen as me being happy and kind of in a daydream or something which it basically was stimming takes me out of myself it makes me feel warm and floaty it helped me to think of ideas and when I was at that Nursery it helped me to vividly imagine that I was some somewhere else that image of my lonely stemming on the sidelines is kind of sad and I do wonder why on Earth the staff members didn't notice me I never remember anybody asking me if I was okay or even attempting to try and get me to integrate more with the group or to help me to interact with anybody at any point but worse than being ignored and left to it would have been to be told to stop stemming to be wrenched out of that safe world and be forced to hold that parachute at some point between the age of 3 and seven I stopped stemming in public like that I probably became conscious that the people around me weren't doing it I also had moments like this one time that I've spoken about before where I was reading a book it was supposed to be quiet reading time and my friend was like you've been doing this and she did an imitation of me and apparently had been lifting the book and flapping the book and had also been standing off my chair a little bit that was quite surprising to me because in my head I'd just been completely immersed in the story and I could picture the book being flat on the desk I had no idea I had been doing that but I knew it was something that I did so she wasn't lying at that point I must have already been making a conscious effort to not flap my hands to not stem in front of other people because that felt like a failure like I I'd slipped up somehow and I had this horrible sinking dread so these immersive big full body movements that I used to do as a child and the Hand flapping fell away instead I would write words sometimes subtly in the air by my side if I was feeling particularly anxious and I'd flick my fingers underneath my cardigan sleeve I probably did other things that people found weird because that was a very popular adjective used to describe me by other children but I was trying my best not to do those things and this whole trying my best thing did coincide with a shift in my well-being I felt heavy and tired all the time as a child for as long as I can remember I've had a kind of sense of Doom Weighing on me which now I know to be a symtom of anxiety I had thoughts that seemed like completely inappropriate for somebody that young of like what am I doing here and what is the point as I got older I would act out more at home when I was told to do things like go to bed on time in order to attempt which it didn't really work out but attempt to stop myself from appearing weird I think I held myself very still at school when I think of school it always felt like being in a straight jacket it was the beginning of me masking by being aware of every single movement and I had this horrible constant awareness of my hands and over time I started to reduce my stemming at home too even though that was my safe place place and even though nobody would have judged me but I started to stick to more kind of socially acceptable stems like dancing I moved from hand flapping to flapping objects I don't know if that was because it seemed more social or if I just decided I preferred that I never stopped doing that I've always done that through my whole life and I still do it but I started doing it just when nobody was in the room going into a different room to do it the older I got the more embarrassed and kind of irritated I'd get if somebody caught me in general I just wasn't a happy young person and it doesn't seem to just be me apparently 70% of autistic children have at least one mental health condition which is pretty horrible to read and 40% have two or more it's just horrible I mean it's supposed to be rainbows and unicorns it's supposed to be the best time of your life everybody says they always want to go back I certainly can't relate to that so in trying to answer the question of why why are we so mentally ill as children I stumbled upon this article from September the article stated that autistic children may start to experience mental health difficulties such as anxiety between the ages of 6 and 11 which definitely reflects my own experience so I was very intrigued the article was based on a study also published in 2023 this study followed 75 children from the ages 2 to three to adolescence as is pretty standard for a lot of autism research only 15 of the people involved in the study out of 75 were born female the study found that changes in both social difficulties and also restrictive repetitive Behavior which is kind of the umbrella that stemming falls under when you are diagnosing autism seem to be directly linked to changes in mental health difficulties particularly anxiety but not in the way they'd expected and in a way that really suggests that attitudes that a lot of experts hold about autism are really dangerous and based on a lot of terrible research and projects from the 20th century that we really kind of need to move on from the researchers had correctly hypothesized that increase in social communication issues would lead to more mental health and behavior challenges which I think makes sense I know I and I'm sure a lot of people watching this video unfortunately have experienced what it's like to be ostracized by your peers the thing that the researchers were completely off about was the link between restrictive and repetitive behaviors rrb including stemming and mental health the hypothesis they put forward was that basically any increase in autism symptoms as they worded it the severity of the autism symptoms of a child would also be linked to an increase in mental health difficulties and behavior challenges and they also thought the opposite would be true as well any decrease in the severity of autism symptoms in how autistic somebody appeared would lead to a decrease in mental health difficulties and that child would be more mentally well the more neurotypical they seemed the less mental health issues they'd have but would you assume that a child who stemmed more would be more likely to be mentally ill you might be able to think of times when you felt more anxious and more overwhelmed by your environment and therefore you've stemmed more so I suppose the researchers are kind of assuming that stemming and other restrictive repetitive behaviors which includes things like kind of lining up toys and also special interests as well they're assuming they're a symptom of distress a sign of an autistic person who is not coping a sign of an autistic person whose autism is more severe which is obviously language that a lot of autistic people don't like that was their hypothesis but what did they actually find they found that their restrictive and repetitive Behavior decreasing severity group had elevated and increasing levels of anxiety 94% of the children who decreased their restrictive repetitive Behavior met the criteria for an anxiety disorder and even the children who just stayed stable they had the same amount of restrictive repetitive Behavior as they grew up had higher amounts of anxiety according to their parents' reports then the group of children who increased their amount of stemming as they got older so basically the more restrictive and repetitive behaviors a child showed as they got older the less likely they were to be diagnosed with an anxiety disorder it was the exact opposite of what they thought would happen in the discussion the authors talk about how some previous Studies have found that restrictive repetitive behaviors are linked to higher levels of anxiety but then they kind of pose the question of well what comes first are people stemming more because they're more anxious or are people anxious because they're stemming more which might sound like a bit of a weird question to ask for an autistic person I don't feel like many of us feel like our staming causes us more anxiety I suppose when you're looking at all restrictive and repetitive behaviors you can end up sometimes with anxiety around your special interests but even if that has been true for me in the past I would never say that I'm a less anxious person if I don't have access to my special interests they do state that previous research has linked restrictive and repetitive Behavior to experiencing positive emotions when I flapped my hands as a child I felt this so warm and floaty and euphoric it allowed me to become completely immersed in what I was doing and I'd step into these beautiful deep flow states where I was completely engrossed in whatever I was trying to focus on when discussing their results the authors say we found that a decrease in rrb severity during middle childhood was related to higher levels of anxiety in late childhood this is contrary to our prediction that decreases in autism symptom severity would be associated with having less mental health symptoms however if rrb function is viewed as a strategy for anxiety reduction then elimination of this form of expression could indeed lead to increased anxiety this position has previously been suggested in 2017 that if individuals are unable to or choose not to perform RB their absence can lead to heightened anxiety levels increasingly we found that children that increased in RB severity had fewer mental health challenges our fings suggest that interventions focused on reducing rrb severity should be implemented cautiously I'd ventured to say that intervention shouldn't focus on reducing them at all unless those restrictive repetitive behaviors are causing the person harm and even in those cases it should be about finding a replacement not about just stopping them and leaving the person with no coping mechanisms in a chaotic World personally I can't imagine any autistic person would be better off if all of their what people want to call restrictive and repetitive behaviors were just erased or prohibited but devastatingly that is exactly what they used to do I've had the pleasure that's the sarcastic pleasure of reading about Lo his work recently he was one of the early researchers involved in developing applied Behavior Analysis ABA therapy for autistic children this work began in the mid 1960s which Autism Speaks notes on the website as if this adds some sort of credibility look we've been doing this since the 60s it must be a good thing right but in 1965 the article scream slaps and love was published in live magazine which detailed how lest was using electric shocks within his treatment in quotation marks to discourage some behaviors and it contains some pretty graphic images as well so maybe we've been doing this since the 1960s is not quite the flex that Autism Speaks thinks it is oh no what I've read of his work is absolutely appalling and dystopian he conducted what was essentially extremely intensive autism conversion therapy for very young children it would go in for years and take up most of their day in a paper from a little bit later on in 1973 he lists self-stimulation and echolalia as two inappropriate behaviors that he managed to successfully decrease he describes the children he worked with as being replete with interfering self-stimulatory Behavior when they first arrived he felt that some of these behaviors needed to be prevented because they were causing harm to the child or to other people but also because he felt they interfered with the child's attention and also because he could see no purpose to them and this is a common theme that comes up even in studies today which we'll get on to in a minute in order to discourage stemming staff members would ignore ignore the children if they stemmed they would maybe leave the room and leave them on their own or they would put them in an isolated room on their own as kind of a punishment if that didn't work they might use a slap or a painful electric shock and then behaviors that they thought were positive that they wanted to encourage they would use rewards and often these rewards were food many people would argue and they do argue in my comment section that ABA therapy has changed a lot since then and it's definitely a topic that I want to explore more on this channel how much has it changed but if I was a parent of an autistic child right now I would very wary of putting them anywhere near ABA therapy everything I've seen so far suggests that the methods are definitely less barbaric but also that they still involve what the 1973 researchers called symbolic approval and disapproval in this 1973 paper or any of his other work that I've had a look at there's never any mention of the well-being of the children and proving their well-being doesn't seem to be a goal at all or even really a consideration the best you could say is it's about improving their function in quotation marks table manners being a thing that he seems to like to go on about quite a lot so I'm really glad we had a priority straight back in the good old days take me back to the 1970s where we don't have any of these silly snowflakes that we have now this is a lovely quote from the 1973 paper throughout there was an emphasis on making the children look as normal as possible rewarding him for normal behavior and punishing his psychotic behavior teaching him to please his parents and us to be grateful for what we would do for him to be afraid of us when we were angry and pleased when we were happy adults were in control in short we attempted to teach these children what parents of the middle class Western World attempt to teach theirs a few sentences later he goes on to refer to these children as primitive psychotic children and he outright states that his hope at this stage was that they would recover from autism he speaks a lot about appropriate play and wanting to encourage appropriate play and I've seen this in more recent studies as well he wanted to discourage the use of toys within restrictive and repetitive behaviors so if someone was using the toy but not in the way he thought that it should be played with that would need to be punished and corrected but then he also admits that it's kind of difficult to tell the difference between playing with something and stemming with something which is interesting I really wonder what he would have made of my playing my playing was almost exclusively me flapping my hands or flapping objects I would sometimes arrange my toys the way I wanted them to be like say I was playing with a doll's house I'd put the Barbies in chairs or on the bed or wherever I wanted them to be and then I would flat my hands in front of the doll's house I would flap a doll I liked flapping doll's hair and I would play out the scenes in my head if I was playing on my own if I was playing with other children I would try and do what lowas calls appropriate play for sure but my preferred way to play my default was always to Flap an object and either play a game that was completely imaginary and the whole thing just was in my head or involved laying out my toys in a certain way and then imagining things in my head I'm sure L us would have canceled my fun straight up that would have been the end of that sadly quite frankly 50 years ago is too recent for my liking but you may say like we've moved on from that now okay let's not dwell on that surely we don't ask children to suppress their stemming and other repetitive behaviors anymore but no we we do there was a paper in 2017 aimed to identify evidence-based behavioral interventions used to decrease restrictive and repetitive behavior in children with autism in this paper stems are listed as a type of impairment impairments included along the Continuum of rrbs may include stereotypical or repetitive motor movements such as continuous jumping or spinning repetitive use of objects playing with only one toy for a prolonged length of time shock horror you can't play with the same toy why is this pathologize I don't I don't get it speech or speech sounds repeating the same word or sound over a prolonged length of time insistence on sameness such as wanting to do things the same way having difficulty with changes in routine highly restricted interests only talking about or playing with items related to the same topic or theme with little variants so special interests are also pathologized which is nice thank you I really appreciate it in this 2017 paper they suggest that restrictive repetitive behaviors should be stopped because they could cause significant functional impairment such as causing an individual to Stand Out by making them look or act differently possibly leading to Social stigmatization and social isolation so basically because other children might bully a child for flapping their hands which is a completely harmless thing to do and potentially leads to an increase in well-being for that child so it's a positive thing to do but because other people might bully and stigmatize you for doing it you must be labeled impaired and you must be fixed we don't try to change the bullies Behavior we don't call them impaired we don't tell them they have social deficits as we do with autistic children we don't encourage neurotypical children to stim more hey look guys it's fun like come join us it's a good time no instead we write a whole article about different ways that we could cure them decreasing RB to enable functional behaviors is is Central to the occupational therapist role with this population many interventions identified as a factor for this impairment are based on the principles of Applied Behavior Analysis ABA and in another quote that's earily similar to low vas's Attitudes by repeatedly performing the same seemingly nonpurposeful behaviors these individuals often do not have the opportunity to learn more functional behaviors and there was another study in September this year which was really horrifying to me it was called reduction of restrictive repes Behavior by environmental enrichment and it Compares autistic children's stemming to the behaviors observed in animals in captivity in zoos and Aquariums and Farms body rocking and swimming in repetitive patterns are generally considered signs of poor Animal Welfare I don't know if anyone else finds the comparison of autistic people to animals in the year 2023 pretty alarming but I certainly do we've decided that autistic human stemming looks a bit like what distressed zoit animals do so therefore it must be the same thing and serve the same purpose and this is why we so desperately need autistic adults to be involved in research in my opinion so many of the studies that I've looked at talk about stemming seeming purposeless or allude to it being poorly understood but autistic adults are right here and we're like kind of happy to explain to you how stemming feels and why we do it from our perspective if you would give us the chance in 2021 there was a lovely paper in which autistic adults and also alistic non-autistic adults were asked about this stemming behaviors which is great I'm happy to share the stemming love with neurotypical people as well if anything like they might be missing out a bit this is an aside and interesting note about the study is that they do include self- diagnosed autistic people in a separate category and then they have officially diagnosed autistic people the results are put the table up on screen if you're feeling any impostor syndrome the results are almost completely identical between those two groups some of the common themes that came up with it stemming can be used for self-regulation to express emotions including positive emotions such as excitement one of the shest ways you could get me to Flap my hands as a town was to put me in front of a cat or a dog cuz it made me happy it made me excited I don't think zoo animals are pacing their cages or acting out because they think the humans tapping on the glass look really cute I don't I don't think that's the reason maybe maybe we should just stop abusing animals as well I don't know they also identified stemming as something that's soothing in a world where sensory issues can cause negative emotions there was a common theme of artistic individuals suppressing stem to be more socially acceptable and using substitute stems that were less obvious but these substitute stems were also less effective which is definitely true of my own life I started pinching the skin on my neck as well somewhere in my middle childhood I used to do it to my mom when I was like drinking a bottle or something I suppose I couldn't be flapping my hands and drinking my bottle at the same time so that was kind of a substitute stem there then later on in life I started doing it to myself when I was at school particularly if I was thinking hard about something or if I was feeling anxious and overwhelmed it was just a little little subtle thing that I could do and it's led to the skin on my neck being quite discolored I think and I still do it today it is certainly miles less effective it's like mildly mildly comforting it is nowhere near the same as the type of stemming I used to do freely when I was a child the study challenges the prevailing view largely from studies in childhood that stemming is a negative behavior thank you we needed that we still need that can you believe how desperately we still need that in 2023 it's sad and it seems like somewhere in middle child childhood whether or not you actually do undergo ABA therapy it's like you get a sort of social ABA therapy you might receive rejection if you st if you flap your hands either from your peers or from your teachers or from your parents and you may be praised for doing things that are seen as more normal appearing less autistic we're receiving what LO has called symbolic approval and disapproval from the people around us from the world and the society around us we learn that it's safest not to be ourselves if we want to avoid ostracism and then we hurt our own mental health in the process my son has a lovely little friend at school who is autistic and they stem very freely very obviously it looks really sweet I love to see it it reminds me a lot of myself the one day I went to sit next to my son on the sofa and I notic he was sat there flapping his hands and I was confused because I waited to see if he would be like me I wasn't diagnosed at the time so I didn't know what be like me meant but I was like is he going to Flap his hands cuz it was such a big thing that I did it as a child he never did and he is very not like me he's very much like my not autistic partner they're like basically clones of each other it's scary not in terms of looks but in terms of personality so it was weird it was weird seeing it I was like oh he was said it's because that's what his friend does so he was imitating the autistic friend and so I was like found a video I had on my phone from when I was diagnosed I was like oh I used to do that too when I was small and I always am just really enthusiastic about isn't it so sweet and he refers to it as them dancing and things like that and I've told him the word stemming and I've said some people do it it just makes makes him feel happy it's just a nice thing to do I've noticed you know occasionally he'll do a little bit of rocking and like moving his arms and stuff like that obviously he's not doing it constantly he's not autistic he doesn't feel the urge to do that but he is supportive of his friend doing it and he admires them and likes them so he kind of wants to imitate them and that's the thing like the imitation if we can destigmatize this can work both ways and even if a neurotypical person doesn't want to stem just being around people being themselves everybody masks to some extent particularly in situ ations like work and school where you don't feel completely comfortable to be yourself isn't it great if everybody feels like they can be more themselves if they're doing something that isn't hurting anyone why why shouldn't you just be allowed to do things you know to make yourself happier maybe in the future autistic children can grow up without thinking that the only way they can possibly Thrive is by trying to learn how to be neurotypical for me that was extremely damaging and I developed a horrible internal voice and internal monologue about how I was always failing and falling short and why could couldn't I just be like everybody else instead of calling things that we don't understand and we don't relate to impairments maybe we can accept that being a happy mentally well person might not look exactly the same for everyone and that's okay just because you don't get something doesn't mean that it automatically needs fixing you don't need to be so fearful of difference why are we still at this point in human history so scared of difference if you are Autistic or suspect you might be Autistic or you have autistic children the best advice I think is to let yourself or let them be autistic there's a page that I really like on the national autistic Society about preventing burnout maybe try stemming a bit more you know you might want to start when you're at home alone privately try some bigger stems there lots of things on Tik Tok and YouTube where people showing stems that they like to do if you remember what you did in childhood and great if not try get some fidgets try letting yourself be autistic it can be tricky to even know what that means when you spent your whole life teaching yourself performing your own ABA therapy on yourself to try and get you to behave in a autistic way it's there's a lot to undo and I think it's just having patience with yourself and realizing that it will take time the world made so many of us shrink before we were even old enough to realize what we were doing there is still time to get back to ourselves the very last day to join my patreon if you'd like to receive a free snail badge so I will leave the link down below I also have a video where I talk through why I decided to start a patreon and all the different things that you get for joining I'll leave a link to that on screen there is a Discord server in there and it is an incredible group of people but yes you have until the end of the day to get your snail badge if you want one I'll probably end up producing a few spares so I'm sure I'll be fine to accept a few last minute strugglers as well if you feel like you've just missed it if you haven't seen my video on monot tropism it's a theory of autism it potentially explains a lot of different facets of autism including why we stem thank you so much for watching and I'll see you soon bye stem freely flap your hands do excessive waving if you want to [Music] [Music] bye [Music] yeah w