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Who’s to say "stims" aren’t acceptable?

[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 . So what? Who ISN"T 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 $100'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 comparison there.  None.  They're two totally different things.  And yet some people here can't seem to see the difference.

What I want to know:  Would you tell someone with athetoid cerebral palsy that failing to try to control their irregular movements and such was on par with not helping others?
I have gone through Middle School with my son and his friends and it was TRUE TORTURE.  Of course, it was probably TRUE TORTURE for 99% of us NT's, too. But the cruelty which really could not be contained by the system was tragic.  My son did not suffer.  He thought all the meanness and teasing was fun. That' how autistic HE is.  But for some of his ASD friends, their slight differences (NONE of them stimmed) were magnified in the light of Middle School.  Their differences mattered a lot, set them apart a lot and even had many of the ADULTS not liking them. Is this fair?  Of course not.  Is it right?  Same answer.  Is it universal?  Yes.  The NT's outnumber the ASD's (at least for the time being) and the cruelty is just something that is not going to go away.  Of course, we can teach our kids that stimming to to calm down is perfectly OK because it hurts no one.  But that's a lie.  It hurts THEM.  And there's not a darned thing you or I can do about the tidal wave of NT kids, parents and teachers who will NEVER think differently.  You have a whole lot greater chance of teaching your child to adjust his stims than you have of convincing the whole world that flapping, feeling your crotch, picking your nose in public, snorting, screeching or doing any manner of odd things is perfectly OK.  Wish the world were different, but it's not.  It's totally true that flapping or any of the other stims is theoretically harmless.  But some day your child will come home desolate that kids made fun of him for his stims and won't let him play.  And some day he'll be fired from his job for having "bad chemistry" with his coworkers. Elsewhere on this site is posted a laundry list of sad statistics about the lack of real-life success for the vast, vast majority of ASD people -- even those with college degrees. The chances of our kids leading typical lives is so remote as to be laughable according to these stats.  Anyone who has any hope at all of their child leading a "normal" life needs to help that child control anything that might shut him out.  Of course, there are some people who believe their children will be happy and successful in their own way without leading independent lives.  That's OK.  My own child will never be fully independent.  But some people have independence as a goal for their child.  If that is the case, a great deal of attention must be paid to how you teach him or her to handle his odder urges.  Because society does not tolerate flapping in the workplace.

Here's one other thing I'd like to point out.

I see plenty of commentary about how we should be understanding the autist's world.

Fine, except...what about the other way around? Why is it okay for OUR world not to be understood?

Many of us here are parents of autistic children. Which of us has NOT spent 24 hours a day, 7 days a week for X amount of years trying DESPERATELY to understand our children?

At the expense of our own happiness? At the expense of our other children, who never deserved to be shoved aside for "the other child's" "more pressing" needs? At the expense of our now non-existent retirement funds...to hell with us, we don't count? At the expense of having to fight the schools...having to fight EI...having to beg and plead, explain, work, work, work, work, work, work every single day of our entire lives for ONE sign of communication from our own children?

No offense to the autist POV here...but do any of you have children? Has your heart been broken daily because you ARE trying to understand your child, because you've sacrificed everything, ignored your other kids, gotten a second job; cleaned the house nine hundred times a day when the child obsessively threw things around over and over and over again; went full nights without sleep--for years; have other kids in therapy because they felt unloved compared to the autistic child--You tell us to look into your world. WE DO. DAILY HOURLY. Do you ever look into ours?

That double standard PISSES ME OFF. I have been parenting a child for 3 years, struggling, crying, trying to keep him from accidentally killing himself every MINUTE OF HIS LIFE, and he doesn't even call me "Mama". Or anything.

But I'M SELFISH?

Pardon me but...how dare you?

Off to take a breather now because I AM PISSED.

[QUOTE=gtto]
What I want to know:  Would you tell someone with athetoid cerebral palsy that failing to try to control their irregular movements and such was on par with not helping others?
[/QUOTE]

 

Nope.  But would you tell a stressed and strapped parent who has devoted HER ENTIRE LIFE to helpign ONE child to the exclusion of all other people--even her other children--that she's not being understanding enough? That she's not "trying to see your world"?

She tries, hon. You just trust me on that one. She tries until she is literally in a corner crying...EVERY day. But tomorrow she gets up again...to AGAIN do things that are "against her nature".

And nowhere did I ever say that taking care of others was necessary for an autist. They were just my examples of things that *might not come naturally to me and I do anyway*, 24 hours a day...because as one of those horrible, non-understanding NTs, I do not have the luxury of "just being myself".

 

Nor did I say that not stimming is "helping others". Am I helping others by being socially appropriate to the best of my ability? I'm just not sure where that whole thing came from. My examples were mostly about helping others because...well, because those things were the first things that came to mind.

MyDearColin38957.7971527778

Oh, and I wanted to add something.

First of all, thanks, GTTO, for putting in all that info...I know we've had our bit of arguing but you are putting out an awful lot of info for parents out there and I didn't want to be rude and glaze over that in my tit-for-tat with Seth's Dad.

Second of all, to Seth's Dad, for the record, ironically, my son doesn't even stim--which I'm assuming is what you meant by "changing" him. Hence, the irony. I mean he doesn't hand flap. He doesn't make repetitive sounds and he doesn't rub against anything such as the carpet, and he doesn't hold objects close to his face. So where you got that I'm trying to change him is beyond me...but anyway...

The way I AM trying to "change" his behaviors (his behaviors--not his essence, for god's sake) is in his loud tantruming. That's a behavior that is happening naturally for him and is his particuar "communication" method, so I suppose by the apparent defintion, I'm trying to "change" him. But I am, more or less, "forcing" him gradually to communicate in a new way, I suppose--because shrieking, throwing things and causing mass hysteria every single time he sets foot in the supermarket just is NOT kosher with me.

Tough.

Now, will I "allow" *some* tantruming? Of course. He is not an NT child. I expect his behavioral improvements (and yes, NOT shrieking IS an improvement...sorry) *to his own level*. For my autistic child, that would be calming gradually (yes, right there in the store...the poor other shoppers!) while I also do my part to keep the experience as non-triggering as possible.

So there you have it. My huge awful changes. The violent warping of my poor son's inner self. My damning of his autistic nature by...well...making him not shriek for an hour.

I hope you can see (sarcasm aside...and yes, I know it's out in full force for me today, and for that I am sorry, but you are NOT listening and I'm aggravated) that deciding that *every single behavioral change* is *not* identical...and that we parents trying to improve our children's behavior *as far as is REASONABLY comfortable for them* and *if those behaviors are truly unacceptable to the world at large* is NOT due to "trying to make NTs feel more comfortable," but FOR OUR CHILDREN'S OWN SAKE.

Whew.

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. 
The ways are unfortunately (and fortunately) as complicated as the individual person, and have to be learned in conjunction with the person as they are growing up.  The unfortunate part about that is that there's no easy blanket solution like "make them avoid doing anything that looks unusual" or "assume everything will be fine".  The fortunate part is that it's more likely to actually work in the long run. 

There are a few things that I can see as pretty useful.  I'm sure there's more.

One is, make sure he's exposed to a wide variety of autistic adults, preferably ones who manage to interface with the NT world, have reasonably happy lives, and still have a strong sense of who they are and aren't going to be passing all the time (some may pass some of the time).  He won't necessarily like, or respond to, all of them, all the time.  But he can form some really important connections where he's learning these strategies to deal with the world from the people who have used them. 

And a lot of autistic adults love meeting autistic kids (to many autistic adults, meeting an autistic kid isn't an experience of pity, but an experience of joy and recognition -- to me, if the kid and I happen to "click" a certain way, it's also one of the few times I can understand children who are older than young babies).  Remember that we share many perceptual traits that non-autistic people don't normally share with us.  I remember going to a meeting of parents once and many of the parents were surprised (and happy) that one chlid who normally just ran around in circles, walked straight up to me, stared at my communication keyboard, and listened intently to my whole speech.  That sort of thing isn't universal (and it depends on if the kid "clicks" with the adult), but it is common because... just the same as you all have a series of social codes and body language that are instinctive to you and we don't always get, we have a set of reactions to our environment and body language that can be intuitive for us, between each other.  I can tell all kinds of things about many other autistic people, that seem totally invisible to most non-autistic people.  It's not magic, it's just reading different cues.

If he develops relationships with other people who share this perceptual experience in common with him (and there's no guarantee that he will, it can't be forced and shouldn't be), then he's more likely to be able to have a sense of "I'm okay as I am, because I'm like such-and-such person, and he's okay as he is, and I like him..." to fall back on, even if the world treats him badly.  If he also develops relationships with other autistic kids, great, but a lot of autistic kids do better with adults.

There were things I was teased about as a kid that did not have to do with autism, but had to do with traits I shared with other family members.  It helped to have a family to come back to who could say things like, "Be proud of your last name, it's part of your heritage, your ancestors came from Scotland with that name, it's nothing to be ashamed of." 

Not all autistic kids have family who share their autistic traits in common, and even those with autistic family members don't always have ones who are all that similar in certain vital ways.  That's why it can be important in the case of something that's not like a family name or a family accent or something, to have an "autistic family" to feel good about the same way.  It takes some of the sting out of the insults.  Luke Jackson says if someone calls him a freak or a geek he tells them "Yeah, and proud of it!"  Whether a person says that or not (it's not everyone's style, and not within everyone's capabilities), learning not to be ashamed of who they are is important.

Astra Milberg has Down's syndrome, and she wrote a letter to a baby with Down's syndrome that said, in part, "Be proud of who you are. Having Down Syndrome is kind of cool. I think we have beautiful eyes. Everyone tells me that we have the greatest smiles, and I think they are right. Being proud will help you in so many ways. It will insure that you 'land softly' every time someone treats you badly or calls you a name. You will hear them all, Retard, Reject, Dummy. I've heard them and really don't care what people who use those words think. They may think I'm Retarded, but I know they are prejudiced."

Do step in if you see bullying going on, and show him that it's possible to stand up to them.  As I quoted someone saying previously, something like "How is he going to learn to stand up for himself if you won't?"  The solution my dad was taught by his aunt (punch the bully in the nose) doesn't work these days, but there are other solutions that do.   Make sure he remembers that bullies are the ones with the problem, not him.

(Even if he doesn't seem to understand language, he may well understand, and he will definitely pick up attitudes and such from his surroundings.  Don't mistake not showing certain body language for not understanding, you never know.)

Try very hard to get him a communication system that works for him.  It can be written, spoken, signed, pictures, or some combination, but that's one of the seriously important things for us to learn.  Remember also that he may have his own communication system and not to discount the fact that he's probably already communicating with you.  (You just might not know his body language much better than he knows yours -- it can be a process of trial and error, like meeting someone from a different culture and learning a common language.)  Remember that if he's anything like most autistic kids (and this has been studied), he is at some point going to be trying very hard to communicate and will communicate given a chance to do it in a way that's understood and that's within his cognitive and physical abilities.

(Autistic approaches and such tend not to generate social reactions from non-autistic people.)

Don't worry too much that he's going to be "in his own world".  Don't force him to socialize 24/7 to prove he's still "with you".  He's going to need some downtime in order to regenerate.  He's going to have to learn how to manage overload.  He has some of the instincts for this already probably.  The problem is that... most non-autistic adults don't have the instincts for helping hone an autistic child's instincts that come from a different neurological setup.  (Not that they can't learn, but that it's not automatic.)  Another reason exposure to autistic adults who seem to "click" with him can be important, he can learn a lot of these things from them.

(I learned more about communication, about the physical world around me, and about... just about everything, in one year of knowing an autistic woman who clicked with me that way in late adolescence... than I had learned in 18 years of various kinds of teaching techniques and therapies and so forth, formal and informal.  I have seen this happen with a lot of autistic kids, and even older kids and adults.  We see people doing things for the same reasons we do them, and they make sense, and we can learn a lot more.  Who better to learn things like self-control or communication skills from, than someone who had to struggle to learn it themselves?  I seriously believe that when autistic kids are learning a skill one of the best things is exposure to another autistic person, who "clicks" with them enough that there's going to be some matching in experiences and communication styles, who has learned the skill before, can demonstrate it, and knows all the steps that go into it for someone who's had trouble learning it.)

An example for me, though, is that one thing that makes people totally overlook what is otherwise considered a very aloof, out-of-it look in my body language, is a dog.  Not just any dog though.  A super-waggy, super-friendly, super-social dog, who doesn't seem to be anything but sweet (that's her entire personality, sweet and playful and loving, and very extroverted, and she has a phenomenal memory for people she's met only once even though her social circle seems to number in the hundreds by now).  She's even great with little kids, she was just at the park playing with one and she knew how to gently knock him over, lick his face, and make him giggle and then back off so she didn't hurt him even when he was uncoordinatedly thwapping at her with his hand.  She's really a people person sort of dog, more than most dogs.

This doesn't work for everyone for a whole lot of reasons, but I've found that even people who despised me before (just for being weird) are nice to me now that I walk around with a dog they like.  It shouldn't take a dog, but at the moment it does sometimes.  It's like the dog's intense very-NT-like social signals rub off on me and people include me in conversations who normally wouldn't give me the time of day or view me as competent.

A friend who is autistic, and still had significant speech problems in high school (could not do complete sentences with any regularity until her twenties), was despised in her high school until a girl from the popular crowd unexpectedly befriended her.  Then suddenly people were nice to her because she was friends with the popular girl (who was popular not for being nasty, but because she was genuinely nice to everyone and nobody could really not like her).  Similar thing to the dog, pairing with someone who sends all the typical social signals and says "This is a desirable person to be around."

(Although I think many assigned buddy systems can be horrible for a whole lot of reasons, including creating mini-staff out of kids.  I'd far rather see this done with a dog or other animal than a kid, unless a kid took a particular liking to someone naturally.  Otherwise it's not exactly friendship, it's more a one-way thing that teaches the other kid some problematic attitudes.)

A lot of the way autistic people learn is by constant, repeated exposure to something in context.  That's not always the way we're taught, but it's one of the ways we seem to (according to science and stuff) learn best.  We absorb the information without always totally knowing we're absorbing it, and then it sort of sits there and comes out later as needed.  It's a different learning technique, and unpredictable (because we're not always learning what we're consciously focusing on), but important to recognize that learning can be taking place even if you can't see it.  (Heck, even if the autistic person can't see it.)

And... yeah, learning to recognize and respond to internal body signals such as overload, and to manage that, is a big one.  Learning what the social rules are, and when to break them and when not to and when it's optional, and so forth, is a big one.  I really eventually want to get some other autistic people together and put together some advice like this for parents, because there are kids being raised this way these days and it's really great when it happens.

This is an example of a kid who was raised with his strengths in mind (and using our strengths to deal with our weak areas is the most efficient strategy):

http://www.isn.net/~jypsy/runman/
http://www.isn.net/~jypsy/AuSpin/senate05.htm

She used to have more information on her website about stuff she'd done to help him over the years, but not now.

There's also Autism Network International (http://www.ani.ac/ -- and they have a history page at http://web.syr.edu/~jisincla/History_of_ANI.html that can be an interesting read on what happens when a lot of autistic people get together).  They have a "Parent's Auxiliary" on their mailing list, where parents can ask questions and any auties willing and able can answer.  They also have a yearly conference called Autreat, where a lot of autistic adults gather, and a lot of parents bring their children.  (And a lot of autistic adults love the autistic children.)  I don't normally go, but I've been there a few times.  They also have talks on how to manage the world from an autistic perspective (an area of strength for auties) rather than from a counterfeit non-autistic perspective (an area of weakness for auties).  You can buy old talks from them, so if you go through their website and see a title and description you like from one of their old conferences, chances are they've got it on video somewhere.  They also publish a newsletter called "Our Voices".

But the ANI mailing list (http://ani.autistics.org/ani-l.html) might be a good idea if you're interested in learning how autistic people can deal with the world as autistic people.  I'm not on the list at the moment, but a lot of parents get a lot out of it, and there's a lot of autistic people there more than willing to answer questions (if posted to the parenting section).  You'll get a whole variety of responses from a whole variety of people with different life experiences, so you won't just be running into the odd one to three of us who seem to frequent boards like this all the time.  Most people there are autistic.

That's a long answer, and it's not the whole answer, but it's what I can figure out to say at the moment, not knowing your son specifically.  Referring you to ANI-L probably works a lot better than expecting one autistic person (who may not even be like your son in certain crucial ways) to know the answers -- you'll get a lot of useful feedback there (provided you read and follow the list rules and so forth).

You're going to meet a lot of people there, who far from having no understanding and experience of the real world, have a ton of experience with it from an autistic perspective, and many have independently developed, or taught each other, "the skills it takes to be different".  Those are the skills we need, because the world really is a nasty place, but changing a few cosmetic things on us won't make much difference, what will make the difference is us learning how to navigate the world including all the hostility and awfulness, from our strengths and not our weak points.  These are all the people "30 years on..." and so forth, even 40, 50, 60 years on, so they know all kinds of things about autistic living that you won't find in a therapy guide or textbook.
gtto38958.652662037[QUOTE=MyDearColin]

Seth's Dad, I know you asked that only autists answer, but I just have to say it.

Seth is little and cute *now*.

You can give Seth a public school education for free *now*.

You are young and healthy and of sound enough mind to help Seth out with additional education--and, if you're lucky, financially able enough--now.

You are a health 280 pounds *now*.

That's great...

Let's step 30 years down the road, shall we?

Who knows what could happen in 30 years. Not to Seth, but to you.

For one thing, you could be dead. We all could. And barring accidents or surprise illness, for the most part these kids will outlive us.

What happens when you're not a strapping 280 anymore? What happens when you're not THERE anymore, but in a hospital or getting older at home? Or in hospice, God forbid? What happens when Seth isn't in the public school education anymore--because he's 40? What happens when *nobody* thinks Seth is a sweet, cute, endearing little boy, because as a normal autistic adult, he's thinking about comforting rituals, whether or not he's hungry (GTTO pointed this out herself on her website--she couldn't tell when she was hungry) and sex?

Maybe you've got money socked away for Seth. Right now.

Will it still be there after you've had to help Seth out in a semi-decent home, which you had to pad financially because our fabulous government is HAPPY to house him--in a place you wouldn't set foot in? (Remember, this is down the road...whatever SS is now, and people definitely complain about it, it will be exponentially worse by then. That ship has sailed.)

You're asking autists if they should be who they are without restriction, or whether they should try to be "like us" (whatever that means--frankly, I'm getting just a BIT tired of all NTs being lumped together as one).

What do you think the answer will be?

But...what do YOU want for Seth?

I don't think you're going to find the answer you're looking for by posting the question the way you did.

Just my $.02. Maybe it's an embittered $.02, and maybe it's a pessimistic $.02. Maybe it's only worth $.01. But it's real.

I keep hearing that we NTs want to "change" our kids "for their (NT's) personal comfort".

NO, dears, that's not why.

It's because we love our children. It's FOR them...so they can survive someday. Without us. As much as that hurts.

[/QUOTE]

 

*Sigh* So I take it your on your soapbox and hate the world.  Im sorry your child is diagnosed with Autism.  Its not the End of the World.  YOU are the one changing your child. Im embracing my sons Abilities, Accepting him for who he is. You are the one trying to change your child into who YOU want (s)he to be.   Its really a shame you cant accept them for who they are.  There is nothing wrong with them, except they are frustrated and act out differently then us so called "normal" people.  These asd kids, are not disabled.  They are not stupid.  They simply think in a way that is different then the typical population.  They process information differently.  If society doesnt accept him for who he is, I dont care, society never accepted me.  I will not conform, and I will not make my child conform. 

Btw I have prepared for his future, I have thought about what will happen if Im not here..and I wont be God Willing, He will be taken care of.

[QUOTE=SethsDad][QUOTE=MyDearColin]

Seth's Dad, I know you asked that only autists answer, but I just have to say it.

Seth is little and cute *now*.

You can give Seth a public school education for free *now*.

You are young and healthy and of sound enough mind to help Seth out with additional education--and, if you're lucky, financially able enough--now.

You are a health 280 pounds *now*.

That's great...

Let's step 30 years down the road, shall we?

Who knows what could happen in 30 years. Not to Seth, but to you.

For one thing, you could be dead. We all could. And barring accidents or surprise illness, for the most part these kids will outlive us.

What happens when you're not a strapping 280 anymore? What happens when you're not THERE anymore, but in a hospital or getting older at home? Or in hospice, God forbid? What happens when Seth isn't in the public school education anymore--because he's 40? What happens when *nobody* thinks Seth is a sweet, cute, endearing little boy, because as a normal autistic adult, he's thinking about comforting rituals, whether or not he's hungry (GTTO pointed this out herself on her website--she couldn't tell when she was hungry) and sex?

Maybe you've got money socked away for Seth. Right now.

Will it still be there after you've had to help Seth out in a semi-decent home, which you had to pad financially because our fabulous government is HAPPY to house him--in a place you wouldn't set foot in? (Remember, this is down the road...whatever SS is now, and people definitely complain about it, it will be exponentially worse by then. That ship has sailed.)

You're asking autists if they should be who they are without restriction, or whether they should try to be "like us" (whatever that means--frankly, I'm getting just a BIT tired of all NTs being lumped together as one).

What do you think the answer will be?

But...what do YOU want for Seth?

I don't think you're going to find the answer you're looking for by posting the question the way you did.

Just my $.02. Maybe it's an embittered $.02, and maybe it's a pessimistic $.02. Maybe it's only worth $.01. But it's real.

I keep hearing that we NTs want to "change" our kids "for their (NT's) personal comfort".

NO, dears, that's not why.

It's because we love our children. It's FOR them...so they can survive someday. Without us. As much as that hurts.

[/QUOTE]

 

*Sigh* So I take it your on your soapbox and hate the world.  Im sorry your child is diagnosed with Autism.  Its not the End of the World.  YOU are the one changing your child. Im embracing my sons Abilities, Accepting him for who he is. You are the one trying to change your child into who YOU want (s)he to be.   Its really a shame you cant accept them for who they are.  There is nothing wrong with them, except they are frustrated and act out differently then us so called "normal" people.  These asd kids, are not disabled.  They are not stupid.  They simply think in a way that is different then the typical population.  They process information differently.  If society doesnt accept him for who he is, I dont care, society never accepted me.  I will not conform, and I will not make my child conform. 

Btw I have prepared for his future, I have thought about what will happen if Im not here..and I wont be God Willing, He will be taken care of.

[/QUOTE]

 

Did you even read my post? Just curious.

 

 

Im sorry your child is diagnosed with Autism.  Its not the End of the World. 

Did I say it was? I just said that some day...we will NOT be here to take care of our children. Far from being the end of the world, theirs will continue on.

 YOU are the one changing your child.

Is that so? In what way, specifically? Would you please point that out to me? Because I did not mention ONE WAY in which I'm changing my child. Period. Again, did you read my post? In some small ways I'm talking about behavior. My older son used to chew his nails. He doesn't now. Did I (or someone else) "change" his inner core? This one will be hard to argue since I didn't even name any specific behaviors...so frankly, you have no CLUE what I'm "changing" about my child. Have NO idea where you got that one from.

 There is nothing wrong with them, except they are frustrated and act out differently then us so called "normal" people. 

Oh, really? That's ALL that's "wrong with" every person on the spectrum? Or are you lucky enough to have a child who's on the "lighter" end of the spectrum?

These asd kids, are not disabled.  They are not stupid

Did I say they were stupid? When and where?

They simply think in a way that is different then the typical population. 

No, they don't all "just" think differently. Do we NT's "all just" think a certain way? So why should autists? Some are violent (trust me, I know). Some have physical issues, especially gastric (again, I know). Some, many, are mute (some electively, some not). Many can't look at and listen at the same time and must separate these out. No, they don't "just" think differently.

If society doesnt accept him for who he is, I dont care, society never accepted me. 

I can imagine. But where did I talk about "conformity"? How, exactly, are you daydreaming that *I* want *my* child to be? I really want to know...that question isn't sarcastic. Just where are you pulling all this imaginary information out of? (Again, I can imagine. But won't add to that sentence.)

 

Btw I have prepared for his future, I have thought about what will happen if Im not here..and I wont be God Willing, He will be taken care of.

Ah! Spiffy! That makes you about one percent of the population. What about the rest of the kids on this planet? Guess they're scr*wed. "Think about" the future? I think about my son's future EVERY DAY. Why the hell do you think I'm worried?

Sigh.

PLEASE read next time, if you don't mind...it would cut out a whole ot of the necessity of having to answer back every erroneous point. YOU are the one on the soap box, Seth's Dad. You took off on a whole other set of ideas that weren't even mine! Creative but...you sound like you have a huge chip on your shoulder that frankly has nothing to do with me. Sorry, but...you own that one all by yourself.

 

MyDearColin38958.6784259259

I think the thing that all of us parents need to realize is after all of the therapies and all that stuff at the end of the day your child will ALWAYS be Autistic. I personally don't like terms like "fix", "cure" or even "get better" for that matter. These children ARE NOT SICK. I'm all for education ALL children need it. Autistics are no different, they just need to be taught differently, not unlike ADHD children need to be taught differently. I don't think they need it pounded into them. On the contrary, I think they are smarter than alot of people give them credit for. Its just because they process information differently that they need to be taught differently. I don't think drills and controlling their "stimms" are the answer. To me this way of dealing is not educational, its more of a control issue. and what you have is a child that later on will function in a robotic manner, And you think THAT won't draw attention?

In response to another post where a question was asked about school. Yes, my child is in school 5 days a week. Does he stimm at school? NOPE. Has he been told not to? NOPE. Does he do it when he gets home? YEP. Are there other NT kids in his class? NOPE. Are their other ASD kids in his class? OH YEAH. Do they stimm? YES, THEY DO. There are just as many kids in the regular kindergarten class as there are in ASD pre-k. Interesting eh? Which means that when my son is mainstreamed they're will be a mix of both ASD and NT kids in ALL classes. Quite frankly, I haven't had any problems with other children teasing my child, the problem is the parents and adults. This kind of "bullying" or teasing is taught at home. Children learn by example. And if you teach them that they are inferior to others, then what do you expect? I guess alot of Adult Autistic people ARE depressed. I can understand why. From an early age alot of them were either ignored, sent to "drill camp" therapy, and were constantly told over and over "don't do that" and "no".  Then they are turned out into a society that expects them to function like NT'S but gives them NOTHING TO GO ON. Thats the irony of this whole situation. Unless Society changes, it doesn't matter how un-Autistic your child "looks" or "acts". If an employer finds out about it regardless of how many degrees your child has, they won't get hired. Thats wrong. We have to change society, we have to change how society treats people. Otherwise, its pointless to argue about education and stimms because, the outcome will be the same.

Look at the man who had Tourettes syndrome, he overcame alot, had alot of therapy, was ridiculed in school, he went to college got a degree in education and guess what. NO ONE WOULD HIRE HIM AS A TEACHER. NOT BECAUSE HE WASN'T QUALIFIED BUT BECAUSE HE HAD TOURETTES.  Finally, ONE woman out of a thousand hired him as a 2nd grade teacher. And he's doing a tremendous job because of ONE PERSON WHO GAVE HIM A CHANCE. I know this isn't related to the topic but it all ties in together. Society needs to adjust to my child, My child doesn't need to adjust to society.  

I have never said to change the way they are.

We are always trying to improve ourselves and our children. That is why we go thru therapys and eval's, etc-----to find a dx and get HELP----so our children can improve and get better and live to the fullest in our world today.

I don't think "stimming" is a "personality" thing. Its a reaction to a stimulus.

One of "my" stims is nail biting. Nervous habit. I wish I could stop. My 11yo---chews things---her clothes, pillows, etc. She wishes she could stop. It's not too socially accepted to sit in class and chew on her sleeves at 11yo.  My 10y moves around alot in her chair in class. She also has OCD issues--having to sit and stand 5 times in her chair before actually sitting. What do you think her classmates think?

Do you think stimming will be fine when they are teens and trying to find a job? Or as adults and the stimming interferes with their job. They can get so pre-occupied with stimming that they can't work and end up losing jobs. As children---this is the time to HELP them find a less noticeable way of relieving their stress.

I believe its more harmful to not help our children then to find different ways to stim. Of course this is MY own opinion and most of you will disagree. I will help my child/children any way I can so they can feel successful in this world. I'm not saying that if they stim--they won't be successful, I just want my child to have all the options available to him without stims getting in the way.

 I actually did not even know that my daughter stimmed till I learned about it. My daughter does not do this much.  The way she does this is by talking and repeating.I do ask her to go and stim in the other room just as I ask my 3 yr. old son to stop playing with a loud toy. I want her to know when and she should and should not continue talking and going on and on b/c she needs to know this in order to hold a job and so forth. The truth is that I dont care what others think about her stimming but I want her to realize not everyone in the world will see her like her mother does. This is reality! I'm not sure I am even communicating in the same language as someone, if they define improvement in terms of looking less autistic.  That's a leap I just can't make, given what I know about autism.

Also, I should note that "stim" itself is not a particularly accurate term.  It was generated at some point in terms of the belief that this behavior was "meaningless" and merely "self-stimulatory".  And it refers to everything from unusual mannerisms to unusual play or unusual fascination with objects.

Unusual mannerisms are mannerisms.  They are not generally bad.  They are not generally destructive.  They serve a purpose.  Removing them (or even "replacing them with mannerisms non-autistic people like better") is not generally an improvement.

But then, I don't view improvement in terms of how unusual someone looks.  At all.  There are way more important things to worry about.
gtto38958.4225462963 Juls, do you think that society will change? I have little hope for this at all. I think this is why people want to do things the other way. They dont believe in society changing. I just dont see it happening. It would be great but unfortunately things are not looking so great?!? This has been a really interesting thread, and I'm not sure my rambling
will be worth anything, but anyhow, here's my two cents:

I never thought Don stimmed all that much, although, perhaps he does
and I don't notice it, as a family friend, who also has an adult child with
autism, commented that Don engaged in a lot more finger-play then her
(to me) very obviously autistic daughter...What stims I do notice are
mainly verbal (saying the same thing over and over, making noises, etc.),
and visual (will look at something closely, hyper-focussing on it, and
laugh, over and over). He does flap when excited, and will sometimes
flop on the floor, play with his hands in front of his eyes, and giggle.

He does these things in school, and it IS discouraged, as it interferes with
his learning. Don doesn't do these things to concentrate, or when he's
overwhelmed - I KNOW what my son does to cope with those (clicks his
jaw or fidgets with a fidget toy to concentrate, lays on the floor and
"zones" out or jumps around the room when overwhelmed). He does
these "interfering stims" for fun, because they're enjoyable to him. Not
much different than a NT kid talking in class, doodling, or playing with a
toy. When Donny is stimming, he is NOT listening and taking in his
environment, and is not doing what he's at school to do - learning.

As for stimming at home, if he's still responsive and interactive, and still
engaging in activities that are less self-isolating (like playing with his
foster brother, the dogs, his toys, or us) more often than not, then I don't
have a problem with it. If he's getting really locked into stimming, then I
redirect him into an interactive activity. We've worked so hard to make
him aware of the world around him, I don't want him to permanently
"zone out" again.

I do encourage "more appropriate/acceptable" stimming when in public,
and, some might not like this, but, when he's perseverating in a repetitive
behaviour that's socially unacceptable, I WILL tell him that it's "weird", and
the other children will make fun of him. Because of his autism, he
wouldn't realize on his own that these behaviours would prevent his
having friends and lead to bullying. He WANTS friends, and doesn't like
being teased. It is MY job, as his mom, to serve as an interpreter for him,
and to explain to him what is and isn't going to be viewed with ridicule.

As far as accepting everyone for who they are, I think that's a beautiful
idea. I'd love for the world to see my son for the beautiful, amazing boy
he is, and for him to have the freedom to be himself, without ever facing
rejection. That's not realistic. Even NT people deal with bullying,
discrimination, and rejection. And, while that's not going to change until
people stand up to it, I don't want to make my son society's guinea pig.
Yes, perhaps if he was to just be himself, and the next 20 autistic kids
after him were to just be themselves, maybe eventually people would
start to get it and accept them. However, it wouldn't happen during my
son's lifetime, and I'm NOT willing to leave him vulnerable that way, to
sacrifice his happiness, solely for the benefit of future generations of
autists. It's all grand and good to say "the good of the many outweighs
the good of the few or the one", but, for me, that's not the case when that
one is MY child.

And, as for the digs at ABA, I absolutely cannot understand why people
are so against it. I practice ABA with my son, and he is not harmed by it,
or devalued by it in any way. It is simply a teaching method. I'm NOT
teaching him to be NT, or not to be himself - I'm teaching him math
concepts, language, reading comprehension, fine motor skills, etc. Are
you saying that ASD kids shouldn't be taught? Because I don't know
about your kid, but mine doesn't learn in a typical classroom
environment. ABA is EASIER and more natural for him. All it means is I
sit with him, and ask him, for example, to tell me what various objects
functions are, and, each time he gets it right, he gets a treat. Yes, he
gets bored. So do NT kids doing their homework - that's part of being a
kid, ASD or NT.

My poor, put upon kiddo
P1040833.jpg">
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(well, he does look a bit put upon here, but only because I kept making
him pose while he wanted to play )
P1060097.jpg">hmmm - why won't my pics work?There is an underlying train of thought in this thread.  Changing who we ARE.  It IS possible to try to become a person we are not naturally.  BUt that effort is doomed to fail. In all of us.  When I was in college, I fell in love with a guy who wanted me to change.  I tried and tried and tried to be the person he wanted me to be.  For 3 years.  But, one day, I woke up and realized that there was NO WAY I could play act this way for the next 50 years.  End of romance.  IMPORTANT lesson learned.  We all have to be who we essentially ARE.  Of course, there are things we DO that are not a part of who we ARE.  Those thing might be able to be modified in some way.  Also, we all change as we grow.  NT and ASD.  For me, the trick is to allow our kids to be who they are while at the same time teach them the ways of the world.  We teach our NT kids to not be rude or loud in public.  We adjust what we expect of them as they mature.  This should be the same for ASD kids.  Different issues, but the same perspective.  Certain behaviors are acceptable at certain stages of life and less acceptable at other stages of life.  What all parent do is teach their kids about how to behave in life.  When a parent comes up against some behavior that may be undesirable in society but that their child simply cannot change, they may have to simply allow it.  I don't think kids should be made to feel guilty or defective for having a stim.  Or having excess stress that they need to release.  Or to have more sensory needs than NT people have.  But to the extent that we can allow them to do what they need to do but find a socially acceptable way to do it, I think we must try.  But to change who they essentially ARE? That is impossible.  For anyone.

[QUOTE=Traci] Juls, do you think that society will change? I have little hope for this at all. I think this is why people want to do things the other way. They dont believe in society changing. I just dont see it happening. It would be great but unfortunately things are not looking so great?!? [/QUOTE] 

I don't see how society cannot NOT CHANGE. You have alot of children that are ASD that will grow up to be adults, in my state alone, Virginia the number of DIAGNOSED ASD CHILDREN IN THE SCHOOL SYSTEM IS OVER 5,000. That number will get bigger. If its that much in my state take that number and times it by all 50 states. At some point, when these children become Adults, Autism will be a "common" term. Its a given, when you look at the numbers. Its not a question of "if" society will change. These children are the future of this country, and THEY WILL BE THE ONES WHO CHANGE THE RULES. I honestly think that there is a reason why all of this is going on in the world now. We need change and our children, God Bless them will be the ones who do it.  

GTTO,

 I totally get what your saying.  My question is, how does a parent teach their autistic child to "interact" with the world without dehumanizing the child, and still allow the child the freedom to follow who they are?

We all can sit here all day and argue about which is better.  But in reality, if the child is not thought of mentally, physically, and socially its all worthless banter.  How does an NT parent teach an ASD child to interact happily, with the child being themselves, in the NT world?

My son will be 3 in January.  He doesnt talk, and is diagnosed as Classic Infantile Autism.  He stims with his hands, flaps paper, puts objects in front of him and puts his other hand behind the object to try to see it.  This behavior does not bother me nor my wife.  We dont discourage it one bit.  We dont care if others stare or make comments.  They will deal with me, and at 6'2" and 280lbs, I dont think to many will say a word.  Woe to them that do!

But anyway, I want to make my son as comfortable as possible.  I dont want him growing up not knowing who he is, or making him think he has to pretend to fit in.  What are some ways around this?

And to be honest with everyone else, Im only interested in GTTO's comments, or someone else who is on the spectrum that can shed some light...

Seth's Dad, I know you asked that only autists answer, but I just have to say it.

Seth is little and cute *now*.

You can give Seth a public school education for free *now*.

You are young and healthy and of sound enough mind to help Seth out with additional education--and, if you're lucky, financially able enough--now.

You are a health 280 pounds *now*.

That's great...

Let's step 30 years down the road, shall we?

Who knows what could happen in 30 years. Not to Seth, but to you.

For one thing, you could be dead. We all could. And barring accidents or surprise illness, for the most part these kids will outlive us.

What happens when you're not a strapping 280 anymore? What happens when you're not THERE anymore, but in a hospital or getting older at home? Or in hospice, God forbid? What happens when Seth isn't in the public school education anymore--because he's 40? What happens when *nobody* thinks Seth is a sweet, cute, endearing little boy, because as a normal autistic adult, he's thinking about comforting rituals, whether or not he's hungry (GTTO pointed this out herself on her website--she couldn't tell when she was hungry) and sex?

Maybe you've got money socked away for Seth. Right now.

Will it still be there after you've had to help Seth out in a semi-decent home, which you had to pad financially because our fabulous government is HAPPY to house him--in a place you wouldn't set foot in? (Remember, this is down the road...whatever SS is now, and people definitely complain about it, it will be exponentially worse by then. That ship has sailed.)

You're asking autists if they should be who they are without restriction, or whether they should try to be "like us" (whatever that means--frankly, I'm getting just a BIT tired of all NTs being lumped together as one).

What do you think the answer will be?

But...what do YOU want for Seth?

I don't think you're going to find the answer you're looking for by posting the question the way you did.

Just my $.02. Maybe it's an embittered $.02, and maybe it's a pessimistic $.02. Maybe it's only worth $.01. But it's real.

I keep hearing that we NTs want to "change" our kids "for their (NT's) personal comfort".

NO, dears, that's not why.

It's because we love our children. It's FOR them...so they can survive someday. Without us. As much as that hurts.

I was speaking with Kaden's EI Coordinator today and we were talking about the bad day he had yesterday.  She pointed out that when a child "stims" it's a way of self-regulating and calming.  I said "So a "stim" is a good thing then, right?"  She said "Yes and no, we all "self-regulate".  For example, if it's really loud in one room, we might retreat to a quieter place.  However, if an ASD person is in a really loud room, they might hand flap instead.  We need to teach Kaden more "acceptable" ways to calm himself."

And it got me thinking -- who says hand flapping isn't "acceptable"?  Maybe if more people did "flap" it would become acceptable!

I just can't stop thinking that he isn't broken, why does everyone think he needs to be "fixed".  I think maybe it's us NT people who have the problem, not them!

 

 It just seems like to me, that not all people will accept these behaviors,but yet we have to accept races, sexual orientation, and others religious beliefs. I tell my son to be himself and I do the same. I try to educate everyone on autism when I take him out and I give out business cards explaining this. Some people are scared. Our children cope the only way they know how and hand flapping is that way then he shouldn't feel it's wrong. I wish my son would flap to calm himself-he loves to hit and tear up objects. Don't worry it may get better!!! Take care!

                                                             Joy

 

My son used to grab his crotch, a lot when he was in kindergarten.  The school officials made a really big deal about it.  At first I didn't think that much of is, because I was under the impression all little boys did that.  I seem to remember my brother and my male cousins holding themselves a lot when they were around 4 and 5.  Anyway...I would tell him to put his hand down, when I would see him do that.  Eventually, he stopped.  But, I think that is something he would have stopped on his own, as he got older. 

Every so often, he'll go through a period of time where he is constantly licking his lips.  He gives himself really badly chapped lips.  And he won't put chapstick on his mouth.

I totally agree!  Just because hand flapping looks funny to some people doesn't make it a bad thing.  Maybe if everyone just learned to accept each other for who they were this world would be a better place.  I always think my little guy hand flaps when he gets excited.  He smiles so cute when he does it I don't care.

Laurie

I agree with you. I personally don't care if someone flaps or not. I think what the EI person is suggesting is maybe trying to replace your son's stim with a more "socially acceptable" one, so that other people (mostly ignorant judgemental ones) aren't "disturbed" by it, and he can fit in better. I agree with you that it's the rest of society that has the problem. People are so worried about conformity, and fitting in, and anything different scares them -- so they just judge and call anything different -"bad". I say -live and let live. What does it matter? -But unfortunately, society has yet to evolve enough to accept others uniqueness. So one of our kids challenges are to be able to function within that society while still maintaining their self and their uniqueness. That's no easy task!

I guess I see it as unacceptable. We can't change the way the world sees things. In his regular K classroom(last year)and my child rocks or flaps----other kids will see that as "weird". Then the name calling and teasing begins. If you don't find "acceptable" ways of stimming--like finger twisting or even playing with a fidget toy--that no one will notice, your child will be the target of teasing and bullying later on. Kids are very mean, they don't understand.

I know when my child gets teased or offended in any way--he thrashes out, hits, kicks, throws things, and will physically injure whoever said something bad to him. He can not control his emotions yet and is very impulsive.

I don't want my child to be teased or bullied. Social skills are hard enough as they are with these disorders.

i believe there is a balance to be reached. we all want our children to be happy and healthy and to love themselves. there are social pressures to consider and shaming to avoid. just like we would guide a 'NT' child out of certain behaviors i think there is a loving parental way to guide them into SOME more socially acceptable stims. that being said, i believe it is my responsibility to educate those around me about lula and what some of her issues are. i bring up her autism to random people because 1. i dont want it to be a shameful family secret and 2. because i want everyone to hear the word 'autism' and know that real kids and real people are affected by it. and we are getting by just fine.

theres enough room in this world for everyone regardless of diagnosis. i will do all that i can to inform and teach those around me and to lovingly raise my girl to become part of this world, the best that i can. im sure i will fail sometimes and succeed others. im just a NT mom, and i have my limitations.

How many of you think Bill Gates is "weird"?

I saw a video clip of him during an interview and he was rocking and wringing his hands. I find that very weird at his age to be doing those things. I know he was probably nervous, and he didn't even know what he was doing, but.....I certainly don't want my child to "subconsciously" do those things at 50 yo.

NOW is the time to find more acceptable stims.

What Holly said. The other day a child in our neighborhood remarked that DS "talked funny" and it broke my heart. I don't want him  to get his feelings hurt any more than he has to. I think more acceptable stims can be taught, if they must stim, so as to minimize teasing by their peers. avalonrose39327.805625

 

My point is that if we stopped "changing" these kids and taught others to be more accepting of differences, someday hand flapping would be considered normal.  Hand flapping doesn't hurt anyone or gross anyone out, so why must they stop it?  For example, someone tapping their foot or pencil -- it's annoying, but we don't tell that person they cannot do it bec. it's not appropriate.

Maybe if we just let these kids be who they are, people would stop thinking they were different or odd.  These kids shouldn't be made to feel they are doing something "wrong" or "shameful" just because they act different.  They shouldn't have to change to make others accept them.  

Some say that autism is a "dirty" word, but maybe us parents who are pushing our kids to be "normal" are the ones who make it that way? 

My son does not stim and never has. However, he is very different in many ways, particularly in language and overall immaturity (for example, he will jump up and down and clap when he's delighted, eventhough he is over 6 feet tall and a teenager).  My son will never be fully independent so perhaps he is now beyond the pale when it comes to worrying about his oddnesses.  In the life he will lead, oddness will not really be an issue.  However, none of us knows until our children are older WHAT their adult lives will be like.  Most of us HOPE our kids will be living fairly typical lives.  If that is our goal, we must teach our children to behave in as typical way as possible.  We must point out to them that other children will shun them if and when they act themselves.  Sad, but true.  We have to teach them to substitute more acceptable stims.  Chewing on gum instead of mouthing things, for example.  Or teach them to decompress through stimming in private. Of course, sometimes when they are little, if we ignore some of the stims or rituals (my son did have rituals), they go away.  But if there is a stim our children persist in that will set them apart, it will grow into a significant negative. As they get older, some children are able to learn what their stress triggers are and learn to excuse themselves so they CAN stim and calm down.  If we want our children to "pass," we have to teach them to behave in as neurotypical a way as possible.  Autistic people cannot afford to "be themselves" if they also want to lead fairly normal lives.  That is a fact.

On this board new parents often ask about whether we older parents know of ASD kids who have become "indistinguishable" from NT kids.  Sometimes the answer is yes, but THOSE are the kids whose parents never, ever let them behave in public in a manner that was less than NT.  Of course, for many of our kids, that is impossible.  But for some, it is.  But ONLY if the parents are vigilant and educate the child CONSTANTLY in the ways of the NT.

 

I think more socially appropriate is left to the parent/child themselves. We've worked on self regulating behaviors for a while now, my personal feeling is if it's not hurting anyone and it helps my son feel more relaxed then who cares.  My son rocks, but only at home. The ABA people weren't big fans of it, I told them tough and now the work it in as part of his breaks, they finally realized that it does serve a purpose. He does it only at home. In school, we went from loud vocalizations and flapping to clapping to asking to go for a quick walk. Now whose to say he isn't going to get a teacher that finds him simply asking to go for a walk,  as "unacceptable."

I think it all comes down to what a person sees as "normal" personally, I don't know what it is and don't care what it is.

As for Bill Gates, if you can't look passed the hand wringing and rocking and see the brilliant mind and generous spirit, well to each their own.....

I know this is a touchy subject and everyone will have a difference of opinions on the topic, so this is just my opinion We let ds stim all he wants too, I found that if I tried to stop him he would become aggitated and seem very unhappy, I just want my son to be happy, but on the flip side I know how cruel kids can be and I do worry that his stims will make him an easy target when he gets older. The thing with my son is he seems to know when others are watching him, and he will try not to stim so much, it kind of pains me to see how hard he has to struggle to stop stimming, it really seems like they can't stop doing it sometimes. Also I was told by a ST and OT that it's okay to let him stim as long as it doesn't get to the point that he isolates himself from others. My son will do therapy without stimming, but once therapy is over he will start stimming again, so for now I will let him stim as much as he wants to, but I don't disagree with parents that decide not to let there children stim as much, everyone parents different and neither way is good or bad parenting, JMHO I've heard that a child's brain is "moldable," some say until age 4, others say til 6. What if by stopping a child from socially inappropriate stims during this crucial time you could change the desire permanently? I don't believe it's out of the realm of possibility. 

Adam's ot taught him, I guess you would say, more appropriate stimming, as playing with texture balls under his desk.  He also has a band around the bottom of his chair so he can feel it on his legs.   As they get older, I don't think for me it is so much if they look weird, but it can be very distracting to other  kids in the classroom (especially if they are mainstreamed) for kids to be rocking  or flapping while they are trying to concentrate.  There are other things he still does that would be considered "not normal" when he has an itch he cannot scratch through his clothes, he said his finger "burn" so he hits himself.  We have tried to get him to do something else, but I guess hitting himself is better than removing his clothes to itch.  Now that would not be acceptable.    

[QUOTE=kk&shay]

I was speaking with Kaden's EI Coordinator today and we were talking about the bad day he had yesterday.  She pointed out that when a child "stims" it's a way of self-regulating and calming.  I said "So a "stim" is a good thing then, right?"  She said "Yes and no, we all "self-regulate".  For example, if it's really loud in one room, we might retreat to a quieter place.  However, if an ASD person is in a really loud room, they might hand flap instead.  We need to teach Kaden more "acceptable" ways to calm himself."

And it got me thinking -- who says hand flapping isn't "acceptable"?  Maybe if more people did "flap" it would become acceptable!

I just can't stop thinking that he isn't broken, why does everyone think he needs to be "fixed".  I think maybe it's us NT people who have the problem, not them!

 

[/QUOTE]

This is a conversation that I have had with alot of people myself. I'm of the mind when it comes to society and what is "acceptable" screw them. There I said it! Society needs to change their ways of looking,talking, and dealing with not just Autism but ALL SPECIAL NEEDS INDIVIDUALS. Its ridiculous. The stimming is not hurting your child(or anyone else for that matter)To take this away from a child is not a good idea. There are alot of people in society that do things I don't consider acceptable but I'm not out there blowing the whistle on every idiot that cuts me off while driving or every moron that makes rude comments about my children in the store. How about some re-direction therapy for those people? Gimme a break, As long as my child is happy and is learning and making progress on his level, he can stimm untill his hearts content. Strangely enough, I have found that by letting my child "stimm" he does it less often, or he will do it only at home. I have never heard one complaint from school about stimming. And if I did I would tell them to get over it. Thats one area where I think it all boils down to "what other people think dictating your life" Lets face it, most people do not want their child to stimm because "it doean't look right, or people may stare" I say LET THEM. There are more important things in my opnion that therapists and teachers need to be focusing on than stimming. If it gets in the way of classtime then designate a stimm break every so often. What the hecks wrong with that? 

I don't know. Who has the luxury of being totally themselves, all the time?

This is going to be controversial, I guess...

I realize that autistic children have a disability that makes certain things harder for them. But that's all a matter of degree--to *a certain extent* most can probably temper their urges if necessary. Again...that's only to a certain extent. I'm not saying that autistic people should be able to act just like NT people. But I do give autistics more credit than that they are forced to succumb to their basest natures 100% of the time.

Frankly, I don't have the luxury of doing what comes naturally to me 100% of the time.

If I did what came naturally, there's no way in HELL I'd be getting up to feed my 2-month-old at 4AM. Are you kidding me? Trust me when I tell you that getting up at 4, for any reason, does NOT come naturally to me. Getting up that early absolutely has an effect on me. For one thing, I am forced to resist my every urge to keep sleeping. I am definitely "off" at 4AM--it's a miracle I don't drop the baby while I'm feeding him. All that day, I am tired and irritable and not acting up to snuff. So going against my nature in this case absolutely, positively does have an effect on me, and not a good one at all. But where's my absolution from having to do it?

My basest nature definitely doesn't tell me, "Go ahead and feed and dress everyone before yourself. Even your husband! Go on...go hungry, go thirsty, don't even take a piss because someone else needs stuff first." But I do it. I go against my nature.

I go against my nature by putting on clothes on a hot day. Who in hell wants to put any clothes on in 100 degree California weather?

I don't want to smile at the cashier in the supermarket. I'm not overwhelmingly happy to be given the privilege of handing her my hard-earned money. But this is a society. As antisocial as my nature is (and trust me--it is!!!), I go ahead and smile. That goes against my nature.

It goes against my nature to be typing this out right now. I would rather be able to just say the words. That's quicker. But I can't. So I'm typing it.

In a while, I will most likely have to go to the bathroom. I have always had a bladder the size of a pea. If I were to do the natural thing, I'd just let go right here. But I'm not going to do that.

I'm not saying autistics should, or even could, take care of others. But I am saying that *to the best of our given abilities*, any individual on the planet goes against his or her nature *sometimes*. Often, even. So I don't see it as such a great tragedy to teach an autistic child not to stim as loudly in some situations, or to do it elsewhere, etc. I really don't think it's such a terribly sad thing, and I definitely don't think it's wrong.

 

 

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 Wonderfully said kk&shay! 
Think of it this way: the next time you have an itch, don't scratch. Learn to sit there, and tolerate it. Use all of your mental capacity to do this. That's how I imagine our kids feel when they need to stim. They look "normal" but it's an act. One that is terribly inefficient for how their brain, and body works. It takes them so much energy to put on this act that I think this energy could be better spent learning how to do so many more things. Also, another thing to consider, a lot of times they will drop this act as they get older, because it's so unatural for them. That's what therapists like to call regression. It's not, they just went back to THEIR normal state.
I say let them be who they are, and help them find their niche in society. I doubt Bill Gates gives a flying hoot if people think he's odd. He's doing what he loves.
I totally agree that stopping stimming is not only a bad thing but a futile thing.  What I would say is that substituting a less intrusive stim is the goal or teaching kids who can understand the issue to stim all they want in private. If one of us has a burning itch in a private area, we simply excuse ourselves to the bathroom and scratch away there.  Sometimes we want to pass gas so badly it hurts, but most of us (at least the females) manage to wait until they get to a private place.  Kids can have breaks written into their IEPs.  Many older, higher functioning kids who are in more mainstreamed situations have "get out of class free" cards.  They are allowed to go to the nurse or the guidance office without explanation.  Those are places they can stim in private.  There is nothing WRONG with stimming and there is a lot right with it. But there is a very high price to pay for that sort of behavior when displayed among peers who DON'T stim. When you are the richest man in the world, you are allowed to stim. But there is only ONE Bill Gates.  And his behavior (I've never noticed it myself) is VERY mild.  For those who have seen Temple Grandin (another one-in-a-billion ASD person), her personal ways are VERY off-putting.  She, of course, is fascinating, but most of us and most of our kids will never be as interesting to total strangers as Gates and Grandin are.  They will not be as easily forgiven for their oddnesses.  Substituting behaviors that give our kids the same or very similar relief will also help them fit in.  Also recognizing that they will NEVER fit it totally may help.  We parents have to use all our love and creativity to help mold our children into people who are both themselves and as lacking in oddity as is feasible.  Or we can simply accept their autism as it is.  Some of us may HAVE to accept it because none of the interventions will prove useful.  But the degree to which our kids can mimic NT behaviors is the degree to which they will be accepted in society and have some kind of shot at a fairly normal life.  Unless, of course, they have brilliant IQ's and have managed to pile up megabucks enough so that no one dares ostracize them.My son has stopped stimming in public, but if he did, I'd let him. Recently, I've come to believe I'm on the spectrum, rather than bipolar (my dx.). I realize I stim and do it in public when I'm nervous and nothing stops me from doing it, no matter how others may think of me, because it calms me down and, frankly, I don't really give a flip what people think. If somebody makes fun of me behind my back, I don't care. At my age (53) if they're rude enough to say anything to me, I'd just say something back and blow it off. My son doesn't like being teased, but he seems to care FAR LESS about teasing than my other kids did, and I think it's because he isn't peer or people-oriented. And anyone who wants to laugh at Bill Gates is free to do so. He laughs all the way to the bank  The man is an absolute, perhaps THE Aspergers success story of our lifetime. Not many Aspies can claim that sort of success, and I bow down to that sort of success. I don't care if he flaps his arms and actually flies; the man is a genius and changed all of our lives. LucasMom71538957.704212963 I think it depends on the type of stim and the purpose...stimming serves various purposes for my son and what we hope to do is just make him aware of what he is doing and why he is doing it and how to self-manage it ......my son spins his body in circles because it is calming and he likes/needs vestibular input...I don't want him to not get that input but I would like to teach him to recognize when he needs that input ... Standing and spinning in circles serves the purpose BUT so does swinging and the merry-go-round at the playground so why not teach him to get that input in a form that is socially acceptable?  AND might encourage play and appropriateness with peers (whereas spinning alone in circles would isolate him).

If I sensed that my son could not do it or understand, I would not go down that path...but he knows what he is doing and is starting to be able to tell me what he needs - I need a squeeze, I need a break, I want to go swing, I need gum,  etc...(and there is absolutely nothing wrong with helping him fit into society as long as it is not a detriment to his self -esteem and at the expense of his own personal needs....) parents of NT kiddos do it all of the time. optimistic38957.7094907407

 That's my point exactly, kids can be taught that different doesn't  always equal wrong. Now, if you're child's stim is hearing breaking glass or something that would cause harm to others or themselves, then it best to find a more appropriate one. I for one am in favor of finding a more appropriate and socially acceptable ones if it's tolerable but I'm not losing any sleep if my son gets excited and flaps his hands for a bit while standing in line at an amusement park, I'm not going to apologize to everyone around me. I'm going to say something like, "Wow, I'm excited too"  If people wanted to stare or make comments, go nuts. 

As for waking to feed a child and stimming, it's like comparing apples and shoelaces, choosing to be a mom and fulfilling those duties and having a nuerological condition in which you process things quite differently than most people thru no fault of your own.

[QUOTE=Holly_WA]

How many of you think Bill Gates is "weird"?

I saw a video clip of him during an interview and he was rocking and wringing his hands. I find that very weird at his age to be doing those things. I know he was probably nervous, and he didn't even know what he was doing, but.....I certainly don't want my child to "subconsciously" do those things at 50 yo.

NOW is the time to find more acceptable stims.

[/QUOTE]

I don't. Knowing now what I know about Autism and why people do this. I don't think its weird at all. By the way Holly, I think its great that your son defends himself when he's being bullied. I know that the teasing and bullying are things that every parent fears BUT its something that ALL KIDS EVEN NTS have to go thru. Keeping your child safe is one thing keeping them in a glass case so no one can hurt them ever is unrealistic. At some time or another your child ASD or not will find out that the real world is not a great place. Thats what a parents job is to guide your child thru this but they have to live and experience the world in order to learn from it.

[QUOTE=Holly_WA]

I guess I see it as unacceptable. We can't change the way the world sees things. In his regular K classroom(last year)and my child rocks or flaps----other kids will see that as "weird". Then the name calling and teasing begins. If you don't find "acceptable" ways of stimming--like finger twisting or even playing with a fidget toy--that no one will notice, your child will be the target of teasing and bullying later on. Kids are very mean, they don't understand.

I know when my child gets teased or offended in any way--he thrashes out, hits, kicks, throws things, and will physically injure whoever said something bad to him. He can not control his emotions yet and is very impulsive.

I don't want my child to be teased or bullied. Social skills are hard enough as they are with these disorders.

[/QUOTE]

This is one of the most backwards pieces of logic I hear all the time.  If people are being bullies, they are being the problem.  It only reinforces the bullies' bad behavior to make everyone be exactly what bullies want them to be.  If bullies are behaving badly, then they are the ones who need their behavior modified.  If you make your child do things "so he won't get bullied" all you're doing is saying to him that bullies are right.
Gtto you couldn't have said it better!!! [QUOTE=MyDearColin]

I don't know. Who has the luxury of being totally themselves, all the time?

This is going to be controversial, I guess...

I realize that autistic children have a disability that makes certain things harder for them. But that's all a matter of degree--to *a certain extent* most can probably temper their urges if necessary. Again...that's only to a certain extent. I'm not saying that autistic people should be able to act just like NT people. But I do give autistics more credit than that they are forced to succumb to their basest natures 100% of the time.

Frankly, I don't have the luxury of doing what comes naturally to me 100% of the time.

If I did what came naturally, there's no way in HELL I'd be getting up to feed my 2-month-old at 4AM. Are you kidding me? Trust me when I tell you that getting up at 4, for any reason, does NOT come naturally to me. Getting up that early absolutely has an effect on me. For one thing, I am forced to resist my every urge to keep sleeping. I am definitely "off" at 4AM--it's a miracle I don't drop the baby while I'm feeding him. All that day, I am tired and irritable and not acting up to snuff. So going against my nature in this case absolutely, positively does have an effect on me, and not a good one at all. But where's my absolution from having to do it?

My basest nature definitely doesn't tell me, "Go ahead and feed and dress everyone before yourself. Even your husband! Go on...go hungry, go thirsty, don't even take a piss because someone else needs stuff first." But I do it. I go against my nature.

I go against my nature by putting on clothes on a hot day. Who in hell wants to put any clothes on in 100 degree California weather?

I don't want to smile at the cashier in the supermarket. I'm not overwhelmingly happy to be given the privilege of handing her my hard-earned money. But this is a society. As antisocial as my nature is (and trust me--it is!!!), I go ahead and smile. That goes against my nature.

It goes against my nature to be typing this out right now. I would rather be able to just say the words. That's quicker. But I can't. So I'm typing it.

In a while, I will most likely have to go to the bathroom. I have always had a bladder the size of a pea. If I were to do the natural thing, I'd just let go right here. But I'm not going to do that.

I'm not saying autistics should, or even could, take care of others. But I am saying that *to the best of our given abilities*, any individual on the planet goes against his or her nature *sometimes*. Often, even. So I don't see it as such a great tragedy to teach an autistic child not to stim as loudly in some situations, or to do it elsewhere, etc. I really don't think it's such a terribly sad thing, and I definitely don't think it's wrong.[/QUOTE]



I think it's in fact a genuinely horrible tragedy that some non-autistic people think that "stimming" is so awful that they put it on par with selfish behavior, and put stopping stimming on par with helping others. 


I mean, seriously, what kind of message are you sending when you equate "not stimming" with "learning to go to the bathroom in the right place when you can" or "doing stuff for your children even when you don't exactly feel like it"?  It sounds to me that you're putting stimming on par with peeing wherever you feel like when you really would otherwise have control over where you pee, and with lying in bed because you're being lazy when your child needs a diaper change.

Doing those other things would be selfish, stimming would not.  Stimming is not a selfish activity, a horrible activity, or a useless activity.  It has nothing to do with the other examples you gave.  It's like telling a redhead that in order to fit in they should dye their hair because "we can't all be who we are all the time just because they feel like it" and redheads get teased with "carrot top" and so forth.

Flapping your hands and being a redhead cause the exact same amount of harm to others -- zero at all -- and both can get you teased.  They also have the exact same amount of selfishness involved in doing them -- zero at all.  Just because it's possible for a redhead to dye their hair a more "acceptable" color doesn't mean that redheads should all do that just to fit in, and doesn't mean that refusing to do that (and most redheads refuse to do that) is just a selfish failure to overcome the base urge to have an unusual hair color.  Same with people with albinism, some dye their hair and some don't but those who do not should not be blamed as selfish or lazy or failure to take others needs into consideration, just because some people shout "ALBINO!" at them and other rude things.

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.
Gtto, may I have your permission to print what you wrote about how to help Autistic children? I  want to use it for my own self as a guideline? I also want to give a copy of it to my family so that they may have a better understanding. I will only do this with your permission. I can save what you wrote for me, but before I give it to my family, who may pass this along to others with Autistic children, I want to make sure its okay with you if your words get passed around. This is extremely insightful information that alot of parents can use when trying to relate to their kids.  http://web.syr.edu/~jisincla/dontmourn.htm
 

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