Who’s to say "stims" aren’t acceptable? | Autism PDD

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[QUOTE=gtto]What I'd wonder, are you making any adjustments for his comfort level in the supermarket?  I can barely deal with most supermarkets without a meltdown, and I'm an adult who understands that screaming and throwing things is a bad idea.  Dark glasses and ear protection are often the only ways I can stand them.

In that case, that's in the category of things I do try to change about what I'm doing, because it actually can harm people.  But much of how I have to change that, lies not in just extinguishing the behavior, but in learning how to predict, handle, and manage overloading situations. 
[/QUOTE]

GTTO, yes! I am definitely seeing a pattern in what upsets Colin, and am sidestepping those issues as best I can. In the supermarket, it's usually related to wanting to hold onto his treat. I always get him a treat and he wants to hold it in the store. He doesn't even have to eat it there--he just wants to hold it. But when he hast to let go to get it scanned, he freaks out. These are the times that I am working on whittling down to just screaming while it's being scanned--not continuing for a long time afterward. I also was thinking of seeing if I can get the same cashier every time so I don't have to "explain Colin" (poor Colin, I would hate that if I were him--speech or no speech) to more than one person, and just see if she'll let him hold the lolipop to scan it.

The other huge meltdown times generally are when something gets disrupted--like the ways he lines his cars. Also, when he's with a huge group of kids and they're all being loud. He loves kids and is very social, but too many of them together seem to freak him out. So, at his old class, which varied from day to day as far as how many kids would attend, I rearranged his days so that he was on the "lightest" days (the fewest kids). And now that he's in a new class full time (5 days), I am glad to see that there are only 7 kids in it, and that number will always be the same.

So yes, we definitely try to go easy on Colin that way. To meet him halfway, you know? We *have* to eat, so we have to shop (and I don't want him homebound with a sitter for every shopping trip)--but I can at least make it easier on him by helping him with his trigger issues. And his school is 5 days--but I can at least make sure it's a school with fewer kids. So, stuff like that is what we do.

ETA: Oh, yes, and...as far as lining up cars, it was getting so that he took up more and more of the couch with them. Then it was the couch AND the chair. Well...that's all the furniture in our living room. Nobody else could sit down. If we moved one car, he would shriek like he had been set on fire. Eventually one day I put my foot down. I moved the cars slooooooooooooooooooowly in front of Colin, saying (through the screams), "We're going to line them up somewhere else. Go ahead and line them up. Just not on the couch. Here. We can try on this side of the wall. We can also do it around the Pack 'N Play..." etc., etc. Eventually, he calmed down. So...again...I was letting him know that his behavior was getting in the way of everyone else's comfort. I wasn't saying what he was doing was *bad*. I was just saying, *do it somewhere else*. So eventually, he did. It took a while, I'll grant you. I probably had to do that for two or three days before he was really okay with the cars being moved somewhere else entirely. He was happy that he could still line them up, though.
MyDearColin38958.8721759259My daughter stims in many ways, one of which is to put her face on the floor
and push herself round and round the room kind of like a grub... it actually
looks very cute and most people find it amusing. We dont try and stop her
stimming, however this might not look so amusing at 40 i suppose. I
wouldn't try and stop this to avoid my imbarrasment because I tuuly don't
ever find it a problem, but I would consider trying to change these
behaviours if she was hurt by much subsequent teasing.

This has been an insightful thread. Personally, I think that when our children are little they should be given every chance to be instructed in trying to fit in the world as most people know it. Surely there are autistic people out there who *do* care about what NT people think of them. Surely there are people with disabilities who wish they were not disabled. I suffer from major bouts of anxiety--it, like autism, is neurologically based. I'd give anything to be anxiety and depression free for the rest of my life, so that I could be more like "everyone else."

Back to the stims....Teaching the child to control them, in my mind, is just one more way of giving them the tools to help them succeed in this world. When they get older, if they choose not to control them, it is their choice and out of our hands. But I'd like to think that I did everything in my power to give them a chance not to have to stim. It would be one less thing for them to get teased about, and as we all know, there is enough for them to get teased about as it is.

My son is not a big stimmer, but if he wanted to spin things, I got him some
toy helicopters that the could spin and a 2 1/2 that was socially appropriate
and at times we would spin them together. Now it is more verbal stimming
by repeating phrases from Dora to himself but I feel as he learns more
language this too may pass and in the meantime he learning some language
from it. Unfortunately I have a much more dangerous though more perhaps
more socially acceptable stim of smoking when I get overwhelmed or
nervous. I think spinning that helicopter would be much healthier for me
but not so socially acceptable at my age.I dont think I misunderstood you, gtto.  I think you had some really good things to say and I agree with you.  You made me think twice about telling my daughter to "put her hands down" tonight.  I wish to God that my daughter did not have to struggle with anything in life.  I dont want the girl to have a paper cut for crying out loud.  I only want her to be happy, well adjusted and confident about herself.  Yes, I worry A LOT about her and school.  I worry to death that she will be teased for her little movement when she gets excited.  But, in a way, I understand that she can be teased about anything...because mommy wants to sit with her at lunch time:)  But really, I can see both sides very well and I understand how everyone feels.  Its tough and really hard for everyone involved.  Here goes my own NTism. I didn't even realize this "spun out of control." I thought people were just expressing their beliefs. At any rate, my son is in class half the time with typical kids and does not stim in front of others. This is his own doing, not mine or anyone else's. He never did stim as much as some kids do. He gets teased anyways because he's different, and the kids can tell. He isn't teased a lot and he deals with it by telling the kids to stop it and walking away, but he's also learning to fight back. However, my son is NEVER aggressive physically and NEVER gets into trouble. EVER. Never has. He also deals with being one of the few African-American kids at school, and that comes up too and he can defend himself. ALL kids, typical or not, need to learn this skill. People WILL pick on you if you let them. For those who want their kids to be as close to "typical" as possible, the only way to accomplish this is for the kids to learn coping against the people in this world who are NOT nice. JMHO, but I'm glad I accept my son as he is. Maybe it's easier because we adopted him and knew he was different from the start or because I rasied three "typicals" before him, but it doesn't seem like a tragedy to me. I don't see autism, especially HFA, as something terrible. The terrible part for me (if I have it--self-diagnosis) is that it wasn't caught so I never learned to accept my differences. Now that I feel I'm an Aspie, I really like myself and enjoy my "uniqueness." However, I think all the moms here are good moms with great intentions who are trying hard to help their precious little ones.

This reminds me of one of those "religion and politics" type topics. Except for us here on this board the hot topics are "Vaccines,ABA,Religion.Politics, and "To stim or not to Stim" that is the question. AHHHH I love it here!

Just remember, we're all family! and families don't always agree, but we're still here for everyone regardless.!

Very well said--Jen.

My 10y was just dx with anxiety and depression and I hear it nearly everyday how she wishes she was like everyone else and her brain could think "normally".  She asked me all the time why she is like this and then goes on to say how she wishes she was dead and wants to kill herself.

Did you guys know that the rate of depression in Aspergers is pretty high?

Children with Asperger Syndrome have the intelligence to compete in regular education but they often do not have the emotional resources to cope with the demands of the classroom. These children are easily stressed due to their inflexibility. Self-esteeem is low, and they are often very self-critical and unable to tolerate making mistakes. Individuals with AS, especially adolescents, may be prone to depression (a high percentage of depression in adults with AS has been documented). Rage reactions/temper outbursts are common in response to stress/frustration. Children with AS rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dicate they should be. Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.

Another reason to try to help my child to become as "normal" as possible. Enough stress in life just being who they are.

A bit of info for us all!!!

Self-stimulation:
(e.g. stimming)- Repetitive, stereotyped  behaviors whose sole purpose appears to be to stimulate ones own senses.  To some extent we all engage in self- stimulation such as when we are anxious or bored, for instance, pen tapping, foot tapping, hair chewing, nail biting, teeth grinding, gum chewing, etc.  However, in children with Autism it becomes problematic because it can be an obsessive preoccupation, not easily redirected.   It is one of the major diagnostic features of Autism.  Examples include repetitive motor movements such as rocking ones body, hand flapping, running in circles, spinning oneself, inappropriate jumping, and clapping.   Other forms of self stimulation can be manipulation of objects (twirling a string, rolling paper, etc.), visual tracking of objects, prolonged gazing or hand regarding.  The production of vocal sounds like grunting, humming, yelling, and repeating phrases out of context is also considered a form of self stimulation.  Yet another form involves obsessions with rituals or routines.   This includes lining objects up,  holding items, Many people with high functioning Autism have reported that some 'self stims' seem to serve a regulatory function for them (ie. calming, shutting out an overwhelming sound, reducing stress in uncomfortable situations). 

Individuals with Autism vary greatly in how their disorder presents itself and self-stim behaviors are no exception to this.  Kearney does not exhibit many of the more common stereotypical behaviors like hand flapping, rocking, lining up of objects, or rigidity with regard to routine.  (At the age of 3 she exhibited those which are in bold above).  She does however engage in a moderate amount of self stimulation which is more subtle to the untrained eye.  It may appear that she is playing with something when all she is really doing is enjoying the sensory input derived from the particular object.  Lately her favorite things to 'stim' on are made of malleable rubber like latex gloves, window clings or balloons.   She also likes to mouth straws and other toys with holes in them "trumpets".  Some of these behaviors have gone away in time but, in her case, have usually given rise to new replacement behaviors.   

Self stimulatory behaviors can be generally divided in two types, excitatory and calming.  Some self stims are somewhat functional and can help a person center themselves, focus and cope with a situation.   For example one 15 year old boy I observed at Autism seminar would rock himself back and forth a couple of times in his seat immediately before he would write down a written answer to a question.   His compliance and accuracy rate had been noted by his teachers and mother to be better when he was allowed to rock as he was preparing his answer.  Other stims are purely excitatory (child sees something they like and gets wound up, may make loud noises, hand flap, clap or become otherwise physically active) and can interfere with focus and learning, These are usually more stigmatizing because they draw more attention and are generally more important to redirect because they are less functional.

Why then is it important to try to reduce self stimulatory  behaviors? 
           1.   It significantly interferes with attention
   2.  It's highly reinforcing to the child and makes other more adaptive behaviors less appealing    
           3.   It is stigmatizing

        How can you intervene to help reduce self stimulatory  behaviors? 

  1. Redirect behaviors in a neutral way, don't comment on them or give them unnecessary attention.
  2. Instead, provide positive reinforcement for the absence of the behavior. 
  3. Don't let the behaviors function in a way that allows the child to escape from demands.

If behaviors cannot be completely eliminated try to limit them to certain times and places (for example, you may choose to let a child stim when they are at home in the privacy of their own bedroom but not in school or at the kitchen table).   When there are many behaviors to address, try to focus most of your attention on reducing excitatory stims versus those that are calming.  Also, sometimes when there is a lack of other motivators, self- stim toys or activities can be used as a positive reinforcement for other target behaviors.  This way the teacher/parent is able to exert some control over the behavior as the child works to earn "stim time".    Since these behaviors are highly preferred (and thus difficult to eradicate) they can be very powerful motivators for learning.  This can be very helpful especially if a child does not have a large repertoire of reinforcers to motivate him with.

Among adults I know diagnosed with Asperger's syndrome, the most depressed are the ones who don't know who they are because their ability to behave in even rudimentarily similar ways to how they think have been systematically eradicated in the name of them "fitting in". 

I can't follow the logic of "They get crap for who they are, so make them able to look like someone else."  I'm not even sure it's logical.  In the end, what you get is a lot of very depressed people who have "fit in" as something they're not (if they've fit in at all), and they know it's all a lie.

People here are mainly dealing with children.

In many of the groups I'm on, I'm one of many people who is dealing with adults who come in saying "I don't know who I am.  I don't know who I am.  I've been acting all this time and I haven't got a clue who I am.  Can someone help me find myself?  I know this isn't me but it's been so long since I've been able to act like myself that I've just been walking around in a confused fog all this time."

One man I know, who'd had extensive training in not only not stimming but a sort of total workover of who he was into a more "acceptable" person, asked me who  he was, he said he didn't know anymore because he'd been trained to mimic NTs but he didn't know what any of it meant, none of it pertained to his thinking, he was lost.  He had a lot of personality problems as a result of all that, and he was very lonely and depressed because he felt that nobody really knew who he was.  He was a success story, he gave every appearance of being happy because that's how he was taught to act.  Those of us who knew him online knew how unhappy he was with all that.

He slowly started stimming again, started doing other "autistic" stuff again, right around when he turned 18 and was able to move out from his parents' house.  A few years later he died in a freak accident.  He had spent 18 years of his life being somebody else and only got about 3 or 4 to be himself, to even start to know himself and understand why he did things, before he was gone.

I know a woman who got to the age of 50 or 60.  She had also received that kind of training.  And she faked it with no clue what she was saying, no clue what she was responding to, no clue what she was doing, just taught to "fit in" at all costs.  She got married without knowing why or really having a choice in the matter (because all that energy in "fitting in" leaves little room for choices)!  She got into her fifties before she started realizing what was going on.  She had to relearn all kinds of things that everyone had figured from her astounding mimicry she'd known.  Fortunately the husband she'd ended up with was incredibly supportive.  But she had to relearn things that most people know as children, because she'd been taught to fake them but didn't know the meaning and couldn't keep up with meaning while faking them.  Part of her job (that she gets paid for) right now is teaching children how to stim.  :-)

These stories, I hear them over and over again in hundreds of variations from hundreds of autistic people.  (I'm not exaggerating when I say hundreds.)  They sometimes know that people meant well in teaching them to pretend in these ways (and they are way above and beyond the ways that most NTs have to pretend, by the way -- it's a totally different ball game from ordinary hiding a few things) but they also know the devastating results across their lifetimes.  They are the ones who feel the most "dissociative," the most depressed, etc.  As one autistic person said, that's a natural consequence of having your major goal in life be to be something that you're thoroughly not.

From what they write, they feel like they are floating through life in a bubble where nobody can see them or touch them, and they can't see anyone else or touch anyone else.  They feel like they are trapped inside a body that is acting in ways they can't understand.  They feel like they are taking the back seat and a scripted routine is the driver.  They feel a total disconnect between their thinking and their actions, so total that few people can even imagine it.  They feel like their "friends" know only an act.  They feel like this 24/7.  Some of them hide in bathrooms and stuff and stim like crazy when they get the chance, and then feel guilty and stupid.  Some of them punish themselves mentally and physically for doing something so "undesirable" that they can't seem to help.

The autistic adults that I know who are the happiest across their entire lifespans are not the people I just described.  They're the ones who have instead learned or been taught skills to survive in the world as autistic people.  They are not necessarily always the "highest functioning", but they are nearly always the ones who are not running around faking all the time.  If they are the people I've just described, they only tend to become happy in life when they get back in control of their actions, instead of watching the world go by as their body imitates things they don't understand.

I'm not exaggerating any of this.  As an autistic adult, this is what I've seen.  None of the people involved enjoyed being bullied in school, but bullying in school often ends up like nothing as bad as what pretending over a lifetime like that is like.  And, as I've seen with that one man I knew, waiting until they're 18 to be able to choose whether or not to do this stuff... that was almost too late for him, he died in his very early 20s.  Some of the others who manage to make it to their 30s, 40s, 50s, or 60s before figuring it out, they could easily die before getting the ability back to understand themselves or the world to more than a fleeting degree.

From what I've seen, the world can definitely be a harsh place to us based on who we are, and I've experienced about as close as a person can get to the ultimate in that kind of harshness that you can experience and still live to tell about it.  But the lives people who pass lead seem even harsher to me in some ways.  If people are hurting you for who you are, at least you know who you are.  Many autistic people who pass, don't have enough energy left to make even simple decisions about what they like or dislike, or to understand their environments, or themselves, they're just on autopilot, they don't know who they are, they feel lost and confused and disoriented but they can't get off the ride.

Where is the joy of fitting in if it's not you that's fitting in?  Where's the pleasure of not being bullied if you're not around to feel it, too busy calculating movements and gestures and responses?  What's the good of having friends if they only know a counterfeit you?

People think this is adjustments of the sort that everyone has to make... but imagine what it would take for you to pretend to be autistic.  Day in and day out.  No "neurotypical" reactions for you.  Not allowed.  And no letting on to anyone that you're only pretending.  Don't make eye contact.  Engage in a lot of repetitive movement.  Don't let on that you understand people are around, even if they are, a lot of the time.  Act as if you're sensitive to the same things autistic people are (even if you don't understand why we are).  Pretend that your perceptual system is the same as ours, even if our perceptual system is totally beyond your comprehension and even if we seem totally unpredictable to you -- try really hard to fake it anyway.  Don't get your comfort from things that non-autistic people generally get comfort from, only from things autistic people generally get comfort from.  Do this 24/7.  See how long before you crack.

If it sounds like a nightmare, the reverse is true as well, it is nightmarishly hard for most autistic people to do this.  The adjustment from autistic to NT or vice versa is not even on the same level as the adjustments that NTs make to fit in with each other normally.

Not that they shouldn't have the choice.  The choice should always be there.  But the person should always remain in control of that choice.  The "act" should never start running the show, like a computer program gone badly awry.  And it should never be emphasized how much better things would be if the person would only act.  We really need as my friend said the skills it takes to be different.  (And this goes whether we, or you, like it or not.  This isn't about "liking or disliking autism", this is about what really works and doesn't work in the long run as seen by watching large numbers of autistic adults of all ages.)

By the way, the person who said they don't like anxiety or depression... a couple of things.  I'm assuming the reasons you don't like them are not "because they're not like everyone else," but because they're seriously unpleasant (by definition) states of mind to be in.  That's thing number one.  Thing number two is that being autistic is way more pervasive than that, it's the entire brain they know now, is wired different, not just a few parts misfiring.  That's everything working on a different system, not one or two differences from an otherwise typical system.  And the differences inherent in autism are not wholly unpleasant the way anxiety and depression are, either.  It's a totally different thing.  (I'm saying this as someone autistic who's had anxiety and depression, by the way, it's just... really different.)

...and I didn't even know this "spun out of control" either.  I thought we were having a discussion.

And yes, goes without saying I think people's intentions are good.  I'm just in a position to see the long-term results of certain kinds of good intentions.
gtto38957.9519675926Okay... just about bullying here.

I was, in school, bullied, in no particular order, with the excuses given by bullies that:

1.  I didn't have the right trendy clothes.  (We weren't poor, but we weren't rich enough to afford all the fashionable stuff either.)

2.  I have a unibrow (the dip-down kind, not the straight-across kind, but there's hair all the way across).

3.  I had dark facial hair even as a kid (and I was a girl), and dark body hair earlier than most kids get it.

4.  My last name made me an easy target for punning.  (glad bags, garbage bags, paper bags, grocery bags, trash bags, baglady, etc)

5.   I didn't speak "correctly".

6.   I behaved in any number of standard autistic ways that were targets for ridicule.  Or failed to behave in certain ways (including failing to bully and tease people).

7.  I didn't outwardly respond to pain in the same way other people did.

8.  My nose turns up.  (Lots of pig jokes.)

9.  My mouth has a slightly unusual shape and is usually open.

10.  My father drove an old pickup truck, often with country music going, when he picked me up.

11.  My father was also just generally considered "weird" for his own appearance.

Etc.

I'm sure that most of this list, which does not pertain much to autism, is familiar to anyone who's been bullied.  Bullies don't bully because people are different, they bully people for whatever reasons inside them cause them to bully, and then they use various differences as the excuse to bully people.

I'm also sure that anyone who's familiar with being bullied will find that erasing these differences didn't really solve much of anything.  Bleaching my facial hair or something just meant they picked something else.

And people let them.  People say that we are bullied because we're fat, or poor, or the "wrong" skin color, or still wet the bed, or because we've got a weird birthmark, or because we're autistic, or because we speak with an accent different from the popular kids, or we listen to the wrong kind of music... but we're really bullied because the kind of people who bully will find targets and once picked it is not the differences that cause them to bully, it is the differences they find (and they will find anything) to find an excuse to bully someone.  The problem is that many of the bullies also grow up to run things and not all of them outgrow being bullies.  So bullying is a lot more socially acceptable in our society than being fat, poor, etc, and the bullying gets blamed on characteristics of the targets.

I have a book by Dave Hingsburger and Ruth Ryan, both of whom work in the developmental services system.

Ruth Ryan has a chapter in there about going to a consultation with a child, and his parents, and his teacher.  The boy's parents had intellectual disabilities.  The child was getting bullied in school but didn't want to talk about it in front of his parents.  He finally said what was going on, though -- people were calling him "prince of the retard house" and telling him that maybe he'd meet a "retard princess" to marry one day.  His parents were horrified the more they heard, because they'd heard that their whole life, and now he was hearing this all the time all day.

The teacher said that this was just a "between kids" thing and the kid was just being overly sensitive.  Ruth Ryan, a psychologist, started to formulate the usual kind of adult reply about bullying, about snappy comebacks and "just ignoring it" and so forth, but she stopped when she saw the look on her colleague's face.  The rest of this is a quote from what she wrote:

[quote]He had tears running down his face and was looking straight at Andy.  He turned to the group and started "This is just wrong."  Andy's parents looked up. "You can't tell me that Andy's parents are PAYING for him to go through that every day at a place that is supposed to be safe."  The teacher made some faint statement about how he might learn to defend himself.  The teacher made some faint statement about how he might learn to defend himself.  My partner fixed her with a very focused look and responded "How the f--- should he be expected to stand up to these people when YOU can't or won't?  How does he have any idea you will stick by him?"

The rest of the conversation focused on the duties of the teacher and other school personnel to do their part, and to acknowledge that the creation of a nontoxic environment wasn't entirely Andy's responsibility.[/quote]

By all means, I think that dealing with the NT world is important.  I think that learning to deal with the inherent injustices of the NT world is also important.  But I think that merely learning to keep one's head down in the face of all this, while understandable for those who can manage it, does far more damage to society than being unusual does.  Learning to deal constructively with it is totally different than learning to acquiesce to it.
Hmmmm. I'm wondering if my Lucas is so calm and happy because I'm so accepting of him. He certainly started out a furious little boy who hurt himself, others, screamed etc. Talking helped him, but maybe letting him stim and be himself also made him  the content kid he is today. Lots of people comment on his happiness and, for an autistic kid, he has no difficult behaviors. I never thought of how frustrating it must be for a child to be told he can't be what is natural to him. Hey, I don't really know why my son is a happy kid. I do know that anyone who met him would agree that he is very comfortable in his skin. I agree that autistic kids are different and we can't hold them to the same behavioral expectations of NT kids or they will be miserable. As one who feels I was misdiagnosed, I spent most of my life frustrated, depressed, and miserable trying to be "like everyone else." I was high enough functioning to SORT OF do it when I put forth an enourmous effort, but it wrung me out and I learned to hate being around people. Is it worth it? I'd rather have others think I"m wierd. I am weird [QUOTE=LucasMom715]gtto, for what it's worth, I get it and agree. Suppressing a stim is like trying to suppress a seizure. It won't be done. It will only make the child feel ashamed. In the end, the stim will take place because it's part of autism. My son has chosen to stim in private only, but that's his choice. Nobody ever told him to do that. At times, I tap my fingers or wiggle my foot and people ask about it and I just say it's nervous energy--pesonally I don't care what they think. My rule is, if it doesn't hurt somebody else, who cares what you do? And if you care, that's your problem, not mine. Stimming hurts nobody. If it bothers somebody else, oh well. Don't look. Too bad, so sad, etc.[/quote]

Yes, absolutely, choice is a big part of it.  If someone chooses to do so and can do so (but on the understanding they can always stop later), that's fine.  And I think people should know when possible what the social norms are in any given situation, but also know which ones are the important ones (the ones about being considerate of others, etc) and which ones are the arbitrary ones (the ones that say "stimming makes you look stupid"), and which ones are okay to break in which circumstances.

Like, when someone explained to me that screaming might be scary for the war veterans in my apartment building, I have worked on not screaming in places they can hear it.  (But I note, this is possible for me, it's not always possible for everyone.)  But when someone explains to me that the fact that I lie down on the floor when exhausted embarrasses them, then I'm going to say "Sorry, I have to lie down somewhere, otherwise my body will just stop functioning."  And I will try to lie down quietly and out of the way so I'm not in the walkway, because being in the walkway could make people trip over me.  And I try not to lie down in places where other people are trying to work, etc.  But I can't avoid lying down (and sometimes if I don't lie down I'd vomit, which I'm sure would be much more of a disruption than lying down).

If hand-flapping is causing someone actual sensory distress, I try to turn away so they don't see it, but I'm not going to be able to just stop it without splinting my wrists.  (It can make some people dizzy.  I used to have an autistic friend who would run up and down in a chaotic way that overloaded me to watch, but then I just turned the other way and didn't watch it and we were fine.)  And I'm not going to even turn away for anything less than genuine sensory distress rather than mere emotional discomfort with "abnormality".

I have worked very hard to learn about the NT world, but it doesn't mean I'm going to turn myself into an NT for the comfort of the NT world.  I have learned their language, I have learned to use their language in conjunction with thought, I have learned what upsets them for good reason and what upsets many of them for what I consider bad reasons, I have modified the genuinely destructive aspects of my behavior for them (and everyone else too) to the best of my ability and using nearly all of my spare energy to do so... but I've learned this so that I can make the decisions about what is and is not truly necessary and what is and is not the right thing to do.  Just because I don't cater to every cultural whim does not mean I don't respect the people in that culture, one I happen to be a member of too for that matter, and one I have spent a good deal of my life learning painstakingly to interface with in a way that most people within it can at least somewhat understand. 

I am sure that NTs make the same sorts of decisions all the time -- what to change and what not to change.  Knowledge is power in these situations, but not everything has to be changed just because it looks unusual.  My own choices at the moment focus on function over form.

I think as a kid with everyone telling me that I was bullied 'because I was different' I would've wished that I was 'the same' (whatever that is), but don't all kids?  And don't most kids eventually learn that 'different' isn't so bad and that the experience of difference can even make them strong, and that if they did change to fit in, it wasn't everything it was cracked up to be?  Don't most kids who do end up fitting in, learn that it's a constant struggle to keep up with all the 'popular' trends and so forth, and eventually learn that every kid on the planet was struggling with the idea that there was something wrong with them for every little difference?  And that these differences were not as big a deal as they seemed in grade school, or middle school, or high school?

When I was a kid one of my teachers wrote on my report card that I was going to have a very lonely road through life but that he believed I had the strength and persistence to handle it.  I don't think that strength and persistence is just innately there, I think it comes out gradually and unexpectedly with the struggle of being different around people who want you to not be different (whatever that means).  I think it leads to other kinds of difference.  I don't think it's bad.  I do think a lot of people who've been different, including a lot of NTs, can relate to what I'm saying here.  Not all of life is easy.  At all.  But learning to meet a not-easy life head on from a strong foundation of values and such has its own rewards, and that is the life that many sufficiently "different" people end up having.

And that takes a different set of skills than it takes to "pretend to be normal" all the time.  But those are valuable skills.  They are not about being inconsiderate or rude, they are about being different but still interfacing more or less usefully with a society that is very different from you.  Many people who are different in some way learn those skills, and remain different.  This is not the same as not adapting to society.  It's more like, adapting to society in a particular set of ways, rather than blending in to society.  I don't blend in, but adaptation is something I often excel at.  The two are not the same.

This is a quote from a friend of mine's unpublished autobiography:

[in describing being good at saying and doing things other people wouldn’t dare to say or do]

This is of course an ability that carries with it a high degree of risk. From a perspective that sees persons as atomic — discrete units of mass and energy floating in a vacuum — my ability to take these risks is “pathological.”

But humans are not the classicist’s atoms floating in a vacuum: they are components of a society, an ecosystem, and a universe. There’s an essential social role for precisely this kind of risk-taker. This is the part of the puzzle where I fit.

If I were to try to “learn” to avoid these risks, what I’d really be “learning” is how not to fit into my natural role in society, how to be a true misfit, rather than an apparent one. I can’t benefit from “skills” that would turn me away from taking these risks, but I have benefited from everything I’ve ever learned that has made me better able to recognize and manage these risks.

This is where I think most attempts to “help” autistic spectrum persons fail. They start from the assumption that the person does not fit in, and then seek to twist the person into some imitation of normalcy — usually at the expense of the autistic spectrum person’s sense of self and self-esteem — rather than starting from the position that the person has a role, already does fit in as a critical edge piece of the human puzzle, and seeking to help them develop the tools they need to fill that role effectively. We don’t need the skills it takes to be “normal”; we need the skills it takes to be different.

I’d buy the idea that NTs have a real (and not merely a majority-rules) grasp of things social if I didn’t find myself reminding them that they live in a society as often as I do…

I do like being places where I blend in, though, sometimes.  That's one reason I'm going to the conference of the Autism National Committee on the 8th.  There will be lots of people there who look and move like me.  I will not stand out.  Not because I have conformed, but because I will be around a lot of people who don't conform in the same ways I don't.  An autistic person once said, "Normal is being in the company of those like oneself."

Jim Sinclair once wrote that his mother always told him to be nice to bullies and they would be friends with him, and he always wondered why on earth he'd want to be friends with people who treated him the way he was being treated.

I also remember seeing a movie once where there were a bunch of kids in high school who were different in various ways.  They were asking if they'd be friends still once they were out of detention.  And a lot of them were saying no way, that they belonged to different cliques, etc.  One girl, who had no friends, said something like, "I don't have any friends, but if I did, I don't think the kinds of friends I have would care about things like that."  Exactly.

gtto38957.8570601852

MyDearColin - omg, I feel for you.  I read what you wrote and I can feel how upset you are.  

I hate to see threads like this spin out of control.  This is a forum where people come looking for advise, help other people and share opinions.  Thats all it is, an opinion.  So what if someone doesnt feel the same as you.  It does not make anyone wrong or right. 

I my eyes, everyone here is right.  There is no need to make anyone feel wrong. 

Stimming is a very touchy subject.  I totally understand why some people dont want their kids to be a target for teasing.  Its hard to imagine your child hurting.  I think its a normal response to try and "fix" the problem, I know I wish I could make it go away.  But, I totally understand why some people want to let their kids stim - its natural for them.  Why try and change who they are.  Its very tough.  I still dont have clear idea on the whole thing for myself.

I think also a lot of what I've said has been misunderstood.  (i.e. I wasn't calling anyone selfish, I wasn't attacking anyone, etc)

Gee-----I didn't think this topic was that big of deal!!! I NEVER said that stimming should be stopped!! They can't stop!! I said to try to replace it by more non-noticeable stimming. Like a sensory hand ball, finger fidget toys, etc. I have spent 0's on fidget toys. My son doesn't like any of them. My 10y loves them!

ASD kids aren't the only ones you stim. MY 10y has severe anixety and doesn't do flapping or anything---but she wrings her hands/fingers so hard--she could cut off circulation. She rocks in her chair when taking a test or even trying to complete homework. She always attempts to pull her hair out and hit herself in the head when she's had too much. These things may be the need for calming herself or from total frustration.

I'm sure its just MY OWN personal view on this---but I want my child to replace his stims with more non-noticeable ones. One that he does do when in school is ALWAYS holds a crayon when doing any seat work. It helps with his attention and ability to concentrate on what he's doing.

To those of you who are 110% towards allowing your child to express their stim's in whichever way they do----is your child in school? And--if so---are they in a classroom with NT kids? And if they are----are there other ASD kids in the class.

I don't know where you guys are from--but where I'm from---my son was the ONLY ASD kid in school. Luckily this year he gets to go to a different school and I think there will be at least 1-2 more with ASD---but not in his class.

I don't want my child to HAVE to stick-up for himself if bullying/teasing happen. Because when he does----which child do you think will get in trouble? It has always been MINE!!!!! He is different and aggressive and the kids know it--even in K. And maybe its because its not only ASD--but bipolar also. And then anxiety--and refuses to go to class and screaming and all the kids want to know "what's the matter with Jacob".

Good luck to those of you who think you can change the minds of all. Just getting my kid in a school that was more approperiate for him----took over 1 year and many trips to the principles office, written up many times, and finally me taking him out of school because he ended the year by cutting 12" off a little girls hair!!!!!

 I guess I'm at a loss over this, Stimming, in my understanding is a way that a child/person processes input when their CNS gets over loaded. It's their way of calming themselves. It's not like a kid is saying, I'm going to flap my hands to annoy the rest of the world. It's not something the can turn off and from what I've read and heard from other people, it serves a very real purpose.

I also wanted to say that in no way should Gtto be excluded in any conversations  solely because she doesn't have a child . That's just rediculous.

Every child is teased or bullied, myself included, it's up to us to help them overcome adversity,   It's also up to us to teach our children to treat others the way you want to be treated. As we know, parents are a childs greatest teachers.

To say that a child with a disability needs to conform to our world, whatever that is, is more or less sweeping them back into the cellar. 

 

gtto, for what it's worth, I get it and agree. Suppressing a stim is like trying to suppress a seizure. It won't be done. It will only make the child feel ashamed. In the end, the stim will take place because it's part of autism. My son has chosen to stim in private only, but that's his choice. Nobody ever told him to do that. At times, I tap my fingers or wiggle my foot and people ask about it and I just say it's nervous energy--pesonally I don't care what they think. My rule is, if it doesn't hurt somebody else, who cares what you do? And if you care, that's your problem, not mine. Stimming hurts nobody. If it bothers somebody else, oh well. Don't look. Too bad, so sad, etc.

 Peeing in public is unsanitary. Flapping your arms, unless you are bumping people around you, isn't hurting anybody else. Social norms are very subjective. There are things I find very offensive that others find all right. Few people agree on social norms. Different families have different norms. Even within families people disagree. I think it's futile to try to suppress a child's stims. If somebody else wants to suppress them, they can, but the child will still be autistic, still be different, and still probably get teased. My son has done a pretty good job of learning to defend himself. I think that's a better skill than suppressing something that may help him, hurts nobody, and teaches him to assert himself. The fact that we all have differeing opinions on this indicates that there are no black and white social norms, unless we are talking about murder or burglery, etc. I happen to totally agree with this point of view. We can't do whatever we want (steal, kill, etc), but we certainly CAN have unusual behaviors (twist our hair, bite our nails, smack our lips). None of these things are against the law. Peeing in public is. Big difference.

LucasMom71538957.8180324074[QUOTE=MyDearColin][QUOTE=juls35inva]

 Gtto is right, its a double standard to expect our children to "be like all the others" but yet, we're teaching them that who they are is WRONG. [/QUOTE]

 

Again, how is it "teaching them that what they do is wrong" when we urge autistic people to act in a certain manner, but perfectly okay to teach NT people to act in a certain manner?

I say again, there are hundreds, thousands of natural feelings and urges that NT children are expected to overcome daily.

THAT is the double-standard. I truly am not getting this particular argument.

[/QUOTE]

Nt children and Autistic children are different. there is no comparison. Autism is a nerological condtion. Stimming is alot of times actions that are not controlled. Emotion is something alot of Autsitic children have problems coping with. Plus combined with a lack of verbal communication and sensory issues. Nt children DON'T HAVE THESE ISSUES. If a child is NT and is in a room with alot of people and is disturbed by the noise, they leave the room. An Autistic child can be in a room with ONE PERSON TALKING AND THATS TOO MUCH NOISE. So as a self coping mechanism they "stimm". A stimm is NOT A BAD BEHAVIOR, AN URULY BEHAVIOR OR A FORM OF ACTING OUT. Its NOT A DISCIPLINARY PROBLEM. Autistics have to stimm, just like we have to breathe. Its a natural way of coping or de-stressing. Say you had a bad day and you feel like crying? Its a coping thing. I understand that stimming is considered a "no-no" but I think that you need to pick your stimms the way you pick your battles. No, if my child were hitting himself or injuring others I would not tolerate it. But if he needs to stimm for 5 or 10 min. after preschool every day, I have no problem with it. All I'm saying is in my experience of trying to control stimming, and YES, I USED TO BE OF THE OPINION THAT STIMMING WAS WRONG. I had a biting, angry, hitting agressive child on myhands who would ignore me and not engage in any type of activity with me whatso ever. But, Guess what, one day i decided to stimm with my son, and he actually looked at me and let me in. Since then I have changed my opinion on stimming. It helped me form a relationship with my child. It also has been a great teaching tool. We've used stimms in games for ABC'S, numbers and other things. He's a happier kid, I'm not being bit, and he doesn't stimm as much anymore, he plays, with me and others as well. So, you see why I'm an advocate of stimming? 2 years ago, my son stimmed all day. no eye contact, no words, no hugs,. Totally different child today. He's only been in preschool and receiving services for 8 months. Prior to that I worked with him. To me stimming is not a bad thing at all. You can learn alot about your child by doing what they do.

Everyone will have thier own opinion and this isn't a contest on who's right and who's wrong. But to me, I've seen what taking this away from a child can do to them and I've seen how participating in it can be rewarding and enlightening.  

[QUOTE=MyDearColin]Again, how is it "teaching them that what they do is wrong" when we urge autistic people to act in a certain manner, but perfectly okay to teach NT people to act in a certain manner? (Please note: I do not necessarily mean THE SAME manners. BUt are NT children expected to control themselves to the best of *their* ability, night and day, day in and day out? Hell yes they are. How exactly is that fair compared to expecting autistic people to live up to *their* abilities, whatever those may be for a given person?)[/QUOTE]

I am sure that within every NT person is the unused ability to speak in a monotone at all times.  Should people be required to do everything that is in their ability just because it's in their ability?  I don't think so, and I bet neither do you.  I mean, people can learn superhuman feats of control over their bodies all the time, but there's really no need for it and doing so would be a pointless waste of time.  What you're asking of autistic people is no less than asking an NT to speak in a constant monotone, avoid smiling, avoid all use of gesture in conversation, avoid responding to gestures and vocal tones they see, day in and day out, all because "they can" (and I'm sure they can) and because "everyone must be taught to control themselves".

It's not "living up to our abilities" to fake being like you all the time.  Suppressing stimming does not turn us into more responsible human beings, it does not mean that we are any more considerate of others, it has nothing to do with how much or little we help other people, it has nothing to do with how much or little genuine self-control we exercise when self-control is truly necessary.  You're making it sound like it does, and you're making it sound like saying that people should be free to have our bodies do things that make us in many instances more likely to be able to comprehend our environments and be considerate of others (not less!) is the equivalent of being rude, inconsiderate, selfish, and irresponsible.  I totally beg to differ.
[QUOTE=Nicki73562] i know of a child who is now in a regular school elementary and he stimms (flaps his arms when excited etc) and you know the kids really accept him. His mom told me it took a little time but now they understand him and accept what he does...so i let my daughter stimm and in public if they want to stare let them we are popular that way [/QUOTE]

This is my point, if we teach kids and adults WHAT autism is, both the good and negative aspects, then maybe they would be more accepting. So many people equate autism to Rainman, because that's all they know. It's up to the parents of ASD children to educate others.

And like someone else said, with the staggering number of children being diagnosed, soon there will be plenty of autistic people in society. We will have no choice but to learn to accept them. Not to say that ASD kids don't need to learn to conform to the NT world in some ways, but at this point hand flapping is the least of my son's problem areas.

I agree that if it is a dangerous or harmful stim, it does need to be redirected. I guess it's like anything with parenting you need to "choose your battles".
As a society, we have learned to accept, or are starting to accept, many differences -- people of different races, interracial relationships, same sex marriages. If we can accept these things, then why can't we accept other differences -- differences our kids can't always control?
kk&shay38957.8005787037Did I tell you that you weren't understanding enough, or did I tell you that you're imposing unreasonable standards about stimming and making comparisons that don't make sense?  It seems to me that it's the latter.

And I didn't call you selfish, please read what I wrote again.  I was saying, that you seem to equate "not stimming" with "unselfish behavior", and expect "not stimming" from autistics the same way you'd expect "unselfish behavior" from NTs. 

I am really split down the middle here - I totally understand what gtto said.  Its true.  But on the other hand, I think of my little one and how horrible it would be if someone teased her:(  I dont want that to happen.  I dont want her to be singled out and it would kill me inside to watch her go through something like that.

I dont mind if she needs to something when she gets excited, but, wht not try and encourage a more acceptable movement.  It would be in her best interest.

 

Yeah, that's the other thing.  I don't advocate not bending to the NT world at all.  I advocate bending only in the ways that make sense.  "Failing to stim" does not make sense, it generally does harm to us (and to our ability to understand the NT world) and gives other people nothing except the false comfort of not having to be around people that look different in certain ways (a false comfort that nobody in the world, I don't care how hard they work, is owed).

It also means, that those of us who seriously have no control over it are treated worse in the long run.  Because if everyone who can control it, does, then the only people left to be bullied about it are those who cannot.  I agree with the person who said that we've gotten society to at least partway accept so many other differences, why not this one?

I know a woman who uses a wheelchair who was told that she did not belong in mainstream school because other children should not have to look at people like her.  It seems like the "People should avoid stimming at all costs" (and note I'm talking non-destructive stimming) is the same kind of thing -- it's purely cosmetic, and purely for the convenience of people's prejudices that they don't have to see this sort of person.  It has nothing to do with self-control or otherwise.

And, again, I think that if there is bullying going on, it's the bullies' problem and that acquiescing to bullies only strengthens their problems and their sense that they can get whatever they want from the world by hurting people -- is that really a message to send to bullies?  If we're different, we're going to be picked on anyway for something subtle -- even our names, if they can't find anything else.  Should my mom have gotten a name change just because people called her "Lynch mob" in school?  It would've made her stand out less...

It seems to me that not only school, but society in general is structured so that bullies can get to the top by bullying people.  Yeah we can't change it, but why on earth acquiesce to it?  Why not teach ways of dealing with it, why not teach that it's the bully's problem and not ours, why not teach constructive ways of fighting the bullying that goes on all over the world in general?  It seems to me like changing because of bullies is letting them win without even putting up a fight.
gtto38957.8077314815

[QUOTE=gtto] [QUOTE=MyDearColin]child needs a diaper change.


Autistic people can and do overcome our more seriously destructive urges all the time for the reasons you cite (as do non-autistic people for that matter), but to pair hand-flapping and other stimming with those destructive urges is totally offensive.
[/QUOTE]

 

Part One: Yes, exactly.

Part Two: How, exactly, are all of the things I described "horribly destructive"? What about all that "taking care of others part"? And I know I'll get bashed for this, but I do NOT see taking care of others as "selfish" (a word you stated repeatedly in your post).

I'm not exactly sure how anyone, autistic or not, could decide unilaterally that all NT urges are selfish, while all most autistic urges are...are what? Unselfish? I don't quite get that either. How is stimming not selfish, but putting aside my needs a hundred times a day, selfish?

That's a double standard and even though it's against unofficial rules here to say an autistic person's POV could be wrong, but...that's not right. At all.

Yes, I did talk about not peeing in public places. That's one of the things some, or many, people learn. I didn't say that not peeing in public (which for an NT usually happens between 2 and 5 years old; it's not like it's such a horrible crime or anything beforehand; it's just one of many, many urges we gradually learn to control) is the same as *every type of stimming*.

I don't appreciate the unspoken (or sometimes, spoken) inference here that all autistic behaviors are unavoidable or even somehow noble, yet NT's are just a bunch of selfish people who *can* control *all* our own urges, yet even when we do...and even when it's *for the benefit of other people*...that's selfish too.

Standing here scratching my head...and trying hard NOT to be offended.

Also, not to be a "repeat" but, look at it this way, I think alot of Parents will be surprised in a couple of years, Take for example the numbers of Autism in this country. By the time your child reaches the age of Middle or High School judging by the numbers OVER HALF OF THE SCHOOL WILL BE AUTISTIC.

Also, look at the boy who won the basketball game(I forget his name)He received a TEEN CHOICE AWARD ON NICKLEODEON. He also had the whole team and the whole gymnasium running out to congratulate him when he made the shot. He is a very well liked and popular kid at his school. Lets not be all "gloom and doom" about this. Gtto is right, its a double standard to expect our children to "be like all the others" but yet, we're teaching them that who they are is WRONG. THATS WRONG. Maybe if we didn't try to change our children, they would be less aggressive and angry. We're sending them a message that "they're not okay, and unless they act like they are then we won't accept them" To me thats the worse thing you can do to a child, its worse than bullying and far more damaging to their self esteem. I'm not saying to let them get away with murder, but discipline them, educate them but ACCEPT THEM FOR WHO THEY ARE NOT WHO YOU WANT THEM TO BE.  

As far as looking to how they will be later in life, GOOD GRIEF!! Focus on the now people!! Oh yeah, and another thing about Bill Gates, Damn the man's a gazillionare, Apparently, his stimming hasn't slowed him down, he's stimming all the way to the bank!

juls35inva38957.7838773148[QUOTE=juls35inva]

 Gtto is right, its a double standard to expect our children to "be like all the others" but yet, we're teaching them that who they are is WRONG. [/QUOTE]

 

Again, how is it "teaching them that what they do is wrong" when we urge autistic people to act in a certain manner, but perfectly okay to teach NT people to act in a certain manner?

I say again, there are hundreds, thousands of natural feelings and urges that NT children are expected to overcome daily.

THAT is the double-standard. I truly am not getting this particular argument.

[QUOTE=MyDearColin][QUOTE=juls35inva]

 Gtto is right, its a double standard to expect our children to "be like all the others" but yet, we're teaching them that who they are is WRONG. [/QUOTE]

 

Again, how is it "teaching them that what they do is wrong" when we urge autistic people to act in a certain manner, but perfectly okay to teach NT people to act in a certain manner? (Please note: I do not necessarily mean THE SAME manners. BUt are NT children expected to control themselves to the best of *their* ability, night and day, day in and day out? Hell yes they are. How exactly is that fair compared to expecting autistic people to live up to *their* abilities, whatever those may be for a given person?)

I say again, there are hundreds, thousands of natural feelings and urges that NT children are expected to overcome daily.

THAT is the double-standard. I truly am not getting this particular argument.

[/QUOTE] I said that you said NOT taking care of others is selfish.

You're equating hand-flapping to behavior like "not taking care of others".  You're equating suppressing hand-flapping to behavior like "taking care of others".

There's no compariso