"Indulging ASD Behavior" (not my quote! but ?s about it)

[AnalogWife]

Still new, still processing, apologies if this is old news/topix.

The term "to stim" sounds to me like "stimulating" but I guess it means an ASD method to relax? Anyways, my DS likes to stim with trains and by lining up blocks/boxes of butter at grocery store/vhs cassettes/fire logs/etc. It wasn't until DS was well into EI that I was "hearing" the ECSE say that this was to be discouraged, that he wasn't learning anything with this behavior, that I needed to draw him out of it. Me, my natural mommy understanding was that he was studying the wheels and the physics and that he was meditating on science, that he was a little engineer in the making.

The ESCE encouraged me to put DS's trains away to expose him to other things, which was working out fine. Gradually his trains came back into play and I didn't discourage them, I thought that since he enjoys them, he should be allowed to play with them. During EI visits the ECSE gravitated to other games.

She let out a bit of a gasp when she saw that DS received a remote control train as a gift and jokesy told me that I have to tell friends and family to not give DS trains as gifts.

Yesterday I was observing a discussion started by a mother of an 8yo with Aspergers, she said she was feeling guilty for allowing her DD stim with the computer, that mom was "indulging asd behavior" and wanted to know what other mothers of aspies thought. What instead happened was a number of teens and adults with aspergers answered because they were appalled by the phrase "indulging asd behavior" that it was cruel to keep the child from stimming, that it's the only release some of these children get in a hectic world, that there's nothing wrong with her, to accept her for who she is, everything.

It leaves me very confused, my DS is profoundly speech delayed and ranked in as Autism Disorder (not PDD-NOS or Aspergers), would that make any difference? Do you agree with the method, or do you agree with the offended aspies? So confused!

Incidentally the SLP who originally had the same approach to DS's trains modified her suggestions down the road saying that allowing him to retreat for a few moment at a time is good for DS, but to entice him out of the stim after a few moments.

[StephandOwen]

My ds sounds like yours. He has over 50 thomas dvd's. He has a huge bin of take along thomas trains and a mega huge bin of wooden trains (one of these the top is full of bridges, the middle is FULL of trains and the bottom is full of track). He has Thomas bedding, his room is decorated in Thomas, too many thomas books to count, he's had thomas birthday parties, he's gone to the day out with thomas thing, etc.

Yes, we indulge in his ASD behavior. Why not? It's what makes him happy! AND, I can say years later, that by allowing him to have his trains he has started making HUGE progress. At first he would only line up the trains or spin their wheels. Then he progressed to re-enacting scenes from his thomas movies. Now he still does that, but sometimes he'll also make his own things up with the trains!

All that was a long roundabout way to say that I see nothing wrong with encouraging ANY child with what interests them, ASD or not.

[lotusdebi]

I'm fine with my son doing what interests him. He had the train obsession for a while, and that was fine. Now he's hooked on math, science, electronics, and a cartoon show called "Codename: Kids Next Door". That's also fine. I don't let it take over our lives. I limit electronics in order to get him out of the house for various appointments, or to do homeschool work, or play outside. But, I don't limit because of his autism. I limit because he's my child, and parents should set reasonable limits.

[Kristine233]

My Autistic son stims. Unless its disruptive to his class at school, we allow it. He focuses better when he is allowed to stim. It helps him calm and focus. It may not look like he is paying attention but he is. The only time we redirected him was when the stim was a verbal stim and it was too loud to the point where his teacher couldn't teach the class. At that point he was redirected to another stim (tactile) and also given gum to chew on. Even his teachers recognize that his stims help him calm himself.

Its healthy to have stims, IMO, if that's what the child needs to make themselves comfortable. As a child I was redirected and told not to all together and it was hard! I'd focus more on not doing what they didn't want me to do than focusing on anything else.

It may be helpful to introduce other things that help him calm as well, other stims. Give him more tools for coping (more stim options). He may then venture away from just the one and have a variety.

I also don't see interests as stims. AS and Autistic kids have extreme obsessions at times with a particular subject, and that subject may be calming because they know a lot about it, but its not the same as a stim. Stims are more like behaviors that a person generally doesn't realize they are doing or have less control over. Like rocking, arm flapping, finger rolling, verbal noises like humming and many any other things. My son used to rock, finger roll and verbally stim. He still does a lot of verbal stims but is able to control himself more in public places, but HE decided to work on that, not us. I still finger roll and pace when really agitated or dealing with a lot of anxiety. If someone told me to stop that would be very hard and probably just irritate me more.

My son loved trains and cars as well, but those were one of his over-done obsessions. We still let him do it. Yes, cars all lined up "perfect" before bed, a certain order to anything with wheels, train track built just so. He even had 2 cozy coupes because he would ride in one and pull the other one behind him in a wagon so if he had to do an "oil change" on one he had a spare (he was 3, lol). As they get older it slowly will morph into another obsession and as long as they are allowed to explore these you may be amazed at how that can benefit a child. When he gets older he may decide to learn every bitty thing about a particular subject and that knowledge is priceless, and it all starts out with allowing a child to indulge in something they really love.

[lotusdebi]

As far as verbal and physical stims go, I only limit them when they're distracting. And I try to draw his attention to what he's doing and why, and find other less disruptive things for him to do that help him in the same ways.

I'm pretty much in agreement with StephandOwen and Kristine233 on this.

[Linda on the move]

Originally Posted by AnalogWife

It wasn't until DS was well into EI that I was "hearing" the ECSE say that this was to be discouraged, that he wasn't learning anything with this behavior, that I needed to draw him out of it.

What does ECSE stand for?

I don't define stim the same way he/she does. My definition would be more like in Kristine's post. It's a repetitive behavior that is calming to the child, and it different than a special interest.

Originally Posted by Kristine233

He focuses better when he is allowed to stim. It helps him calm and focus. It may not look like he is paying attention but he is. The only time we redirected him was when the stim was a verbal stim and it was too loud to the point where his teacher couldn't teach the class.

My DD is 13 and doesn't stim like she did at a toddler. Most of the ways that she stims are socially acceptable. She prefers to exercise in very repetitive ways -- swimming the same stroke for 40 minutes is a stimming behavior, but it makes her a heck of a distance swimmer. Her daily stims are things like tapping her foot, running her finger on the desk, etc.

I don't stop any of that. The last I that stopped a stim, she had started banging her head into a table and could have really hurt herself.

Its healthy to have stims, IMO, if that's what the child needs to make themselves comfortable.

I agree. Helping find stims that are harmless, non-intrusive, and hopefully even socially acceptable are good goals in my mind. Finding ways to meet my DD sensory needs help A GREAT DEAL with excessive stimming. Limiting stress is super important. The head banging was related to some homework that wasn't appropriate for her.

Stopping stimming altogether seems misguided.

I also don't see interests as stims. AS and Autistic kids have extreme obsessions at times with a particular subject, and that subject may be calming because they know a lot about it, but its not the same as a stim. Stims are more like behaviors that a person generally doesn't realize they are doing or have less control over. Like rocking, arm flapping, finger rolling, verbal noises like humming and many any other things.

Agreed. The trains don't seem like a stim to be at all, but a special interest. The advice that I received on special interest is to allow them, but work to expand them. Rigid thinking is part of the ASD package, and helping the child to develop some mental flexibility and try new things is good.

So for me, the question isn't whether or not it is OK for your son to play with trains (I think it is) but what new or different thing could you do with trains? Is there some place you could go and walk around real trains? Could you go on a train ride? Get a sticker book about trains? Color a picture of trains? Learn sign language for train related words?

BTW, have you read anything by Temple Grandin? She is autistic, has a PhD and has written extensively on what she feels her mom did right when she was a child, offering guidance on raising kids with autism or aspergers.

[kittynurse]

Originally Posted by StephandOwen

He has a huge bin of take along thomas trains and a mega huge bin of wooden trains (one of these the top is full of bridges, the middle is FULL of trains and the bottom is full of track).

OMG Steph! You just solved two *huge* problems for me!!!! Thank you thank you!!!!

Martha

OK, back to read the rest of the thread!

[AnalogWife]

Almost everything I come across re:stimming includes lining up objects, that's what DS is doing with the trains, he's not setting up storylines or building great tracks, he's lying with his cheek on the floor and hooking the trains up and watching them go back and forth, back and forth. He likes them in a certain order, and retreats to them when things get stressful---like when the ECSE and the SLP are overdoing it!

ECSE = Early Childhood Special Educator

My DH very much encourages DS's train obsession and often takes him to trainyards and they look up videos on youtube--DS s them, but I've noticed a certain behavior that concerns me. As the real-life trains go by on the track in the videos----it's as though his eyes get magnetized to each and every boxcar, he watches each one zip by as his head goes back-and-forth really fast. It strikes me as seizure-like, he also does it to wheels as cars go by. Is this...familiar? It sort of scares me.

Thankfully he has developed another layer onto the train thing, he has started to "chugga-chugga" with them, giving them life...I also notice him doing it to the boxes of butter in the grocery store----it's very difficult getting him out of the display (there's like 300 boxes in there) and lately I hear him "chugga-chugga" as he's re-lining them up.

The dr's say he hand-flaps BUT, he never ever did it before he learned the ASL word for "play" which is sort of hand-flappy, and he went through a stage where he was saying "play" a lot when he saw toys or a playground. Me telling them this made no diffrence, they kept saying he handflapped...he doesn't do it anymore.

Excellent comment re: "indulging homophobic behavior." I think that puts the whole issue into perspective perfectly. I also appreciate the comment about NT girls not dating handflappers and verbal stimmers. Bold point.

[Smithie]

My son flapped for six solid months after he started watching the flapping birds carrying the peach in "James and The Giant Peach." Nobody would believe me that he'd never flapped before. After my mom came to visit and said "you realize that the flapping is totally related to that creepy peach movie, right?" I took away the movie and he's never flapped again. Nor has he asked for the movie back - I think the imagery disturbed him at some deep level. Sometimes you just have to trust yourself and your family, because you have more insight than the experts into what sets your kid off, what is a transient issue, what is permanent issue, etc.

That said, I think you might try letting the train thing alone at home, but putting the kibosh on the butter thing. Touching all the butter in the dairy case falls into that "socially unacceptable" category. It's OK to WANT to do it, but it's really not OK to do it. Not a bad distinction for any person to be able to make, at any age.

[Kristine233]

Wow. I'm going to try to be as gentle as possible because I know my opinion is not necessarily the right opinion, but this struck me in a bad way. I know you said your child does not have ASD, but it sounds like even if he did you don't find these stims acceptable so you'd also redirect (at least in public). So I'm going to respond from that angle.

Most of the ASD kids I know, including my son, work through these in their own way. Some sooner than others. Just because a child has ASD/AS doesn't mean they are oblivious to the social expectations of others. They might not fully understand the rules, but are painfully aware they are different. With that said, I make a point not to make my child feel even more out of place and instead celebrate his uniqueness. I would never physically restrain my child or take something away only to redirect a stim. If I had to take that drastic of measures to stop it, he obviously needs that stim for some reason. So, unless it is a dangerous one, I don't care if he looks a bit silly. If we can gently redirect it into a similar stim we do, but you have to understand WHY he is stimming in the first place.

I know that many adults don't understand the NEED to stim, unless you've experienced it its hard to wrap your mind around it fully. I'll try my best to explain it.

Imagine being in a crowded room where 100 people are talking at once to no one in particular, the air is thick and you are having a hard time breathing, now there are a 1000 ants crawling up your body, your bones are starting to ache yet your muscles feel like they've been pumped with adrenaline. Have that image in your head? Now imagine being asked (by someone across the room) to calmly solve a complicated math word problem that they are going to read aloud to you.

Now imagine that if you rock your body all of these sensations get ordered in your mind magically and you can suddenly think clearly, you are able to ignore the other stimulus - it disapears. The rocking is creating a buffer space. Think stick stuck in wet sand being rocked back and forth, it creates a nice space around it.

These sensations are very real to kids and adults that have ASD/AS. You can't just turn them off and the smallest thing could seem like the example, especially when stressed or learning something new. If I'm super stressed, just someone being in the same room with me breathing is amazingly loud and physically annoying. Yes, physically. Sometimes sounds, sights and smells have a physical feeling to them. Its just one of the ways that the ASD/AS mind works differently.

I'm very fortunate that my husband didn't think my stims were weird. At times they can annoy him. But just because a person stims noticeably, doesn't mean that they wont date, get married or have kids. Usually when as a person gets older they find things that work for them that are less noticeable. They don't need an adult making them feel wrong about being who they are just because they stim. Trust me, my dad constantly telling me to look him in the eyes, stop fidgeting and "just stop" had far more negative impacts on me than the actual stims themselves. It made me very self conscious. The other kids knew I was different already, they didn't need to see my weird behaviors to know that. But guess what, I still had friends.

[Smithie]

... and I just realized that your child is only three. That's very young to be getting control over the stims. The ECSE my son had when he was 2-3 wanted to do a lot of things that I thought were pretty extreme - like not let him carry around three plastic animals all the time. WTH? Are the three plastic animals causing a disturbance? Are they off-putting to the general public? She meant well, but I think she may have been a little to gung-ho about enforcing normalcy on a child who was not normal, and not likely to be in the near future.

You should still put the kibosh on the butter thing. But don't be downcast if it's really hard and takes a looong time to pass the dairy case without a scene. I spent at least a year physically preventing my son from hopping up on the couch behind my guests and strangling them from behind. He turned six today, and wow, things are better. He still comes up with a variety of socially unacceptable stims, but at this point we're a well-oiled redirection machine. I know how to present the redirection and he knows how to take it. I realize that ASD is is whole additional set of challenges, but I refuse to believe that the time and effort you both put in to developing redirection skills is not going to pay off.

[Kristine233]

I should also add that I worked with preschoolers for nearly 10 years and dealt with a lot of ASD kids as well as non-ASD kids who both stimmed. I treated all the kids as if they had sensory needs when it came to stimming and created an environment where it encouraged large motor sensory stimulating activities as well as good transitions to help avoid the stresses that create the need in the first place. Even my most disruptive children did well in this environment, especially since I didn't make them stop. If a child couldn't sit still for group time (we're talking major moving, lol) I tossed out a rug and told them they could move as much as they wanted as long as they stayed on the rug. No fight, no powerstruggle and the child was content doing whatever they needed to do to make it through our group time. It was a possitive thing. Oh, and they most definitely were paying attention.

It touched my heart one day to see the kids playing teacher during free time and one little girl tossed out a rug for one of the kids to sit on who was kinda antsy. I hope they take those things with them later in life.

My point is, whether the child has ASD/AS or not, I treat them the same. I have 2 NT children and one ASD child.

[Smithie]

"I know that many adults don't understand the NEED to stim, unless you've experienced it its hard to wrap your mind around it fully."

I understand the need to stim. I DO stim. So does my mother. So do several of my cousins. None of us have (been dxed with) ASD, so yes, it's likely very different from your experience in terms of degree, but as every single one of us learned to tone it down in public from an early age and are now profoundly grateful not be labeled by the people who interact with us socially, I'm pretty glad that I was taught to redirect in childhood.

It's not a terrible thing, to articulate what's acceptable in a given situation and remove a child from a situation where he can't meet the behavioral standard. Parents of typically-developing kids do it pretty often, and make the same judgments about too loud/too tired/too crowded that parents of SN kids do. They just do it without the added layer of guilt.

It sounds like you were a great preschool teacher. I wish my son had been in your class when he was trying to attend preschool. I have no problem with an environment that provides a wide variety of opportunities for little kids to stim openly - but that's not every environment. When silence or sitting still are the standard, then my kids will adhere to that standard or we will leave. These days, I swear, it's the NT 4 y.o. who causes the exit, way more often than my 6 y.o. Of course, he's had more opportunity to practice his low-key stims. He's got quite the library built up. And his spirit does not appear to be crushed.

I agree that all little kids stim. I also treat my kids all the same, NT or not - nobody is allowed to stim in a way that might bother the person sitting next to them.

[surrogate]

stephandowen

I have the 4yo twin of your son....i just gave away 25 thomas movies, we had 400 (no joke) thomas trains all the stuff to go with, the room stuff etc...i gave away a bunch because we are moving...but wow...

my ds is Pdd-Nos. I let him stim when he needs to, but he doesn't do it as bad as he used to. My family thinks he is acting out and try to reprimand him...they don't get it.

[lolar2]

Originally Posted by Smithie

She meant well, but I think she may have been a little to gung-ho about enforcing normalcy on a child who was not normal, and not likely to be in the near future.

This happens to be the name of a book on disability studies in the humanities. http://www.amazon.com/Enforcing-Norm...5251328&sr=1-1

[Linda on the move]

Originally Posted by AnalogWife

He likes them in a certain order, and retreats to them when things get stressful---like when the ECSE and the SLP are overdoing it!

what you describe doesn't sound alarming at all to me -- for a child on the spectrum. If it is a big issue for the ECSE, could you put the trains away before she comes?

I think that things like this (and the staring at the moving trains in an trance like state) are kinda normal for spectrum kiddos, and I don't think we need to stop it altogether. I try to get a nice balance in my DD's day and week and get her doing different things so she doesn't just get stuck.

I think it's OK for spectrum kids to get "down time" where they are doing something soothing, but spending all day that way wouldn't be helpful for them. Exactly where the balance is for a specific child at a specific phase of life seems like the difficult question.

Me telling them this made no diffrence, they kept saying he handflapped...he doesn't do it anymore.

Little labels come and go.

[Kristine233]

Nope, actually its not. People notice a difference but they get over it. And if a person teaches their child to handle reactions and just do what makes themselves more comfortable and better able to function its totally possible to have a visibly stimming child fit in among peers.

What do you do with a child who was born with some sort of birth abnormality? Like missing an arm or arms that are not formed correctly? Not take them out because they will draw attention? Have them fixed no matter the emotional trama or medical side effects just so they can fit in? Or do you give your child the tools to cope and be supportive of who they are?

I suggest reading the book "Look Me in the Eye" by John Elder Robinson. He is an adult with Asperger's and he goes into detail about friendships, relationships, school and job choices and how his Aspergian behaviors affected each of them. He married and has a son too (just like so many of us). Sure things were hard, but they would have been easier if he had supportive family who understood why he was the way he was. He, like other ASD/AS kids learned through trial and error what works and what doesn't. That's how ALL kids learn.

Ok, here is an example... potty training. What is the socially acceptable age? Generally people start worrying about it at age 2 or 2 1/2. With my younger 2 I didn't even potty train. I figured they'd do it when they were ready. Every once in awhile I'd show them where it was but never pushed it. People were shocked, "She is 3 and you haven't started potty training?!" I wasn't worried about how not potty training them (and forcing them to do something that they weren't ready for or interested in) would affect their dating life as teens, or future jobs. Did they start putting "When did you toss your diapers for good" on job apps? And I guess a teen wearing diapers may be a turn-ff to the opposite sex, but I wasn't worried. Sure enough, somewhere right before age 4 both of my kids just woke up one day and decided they were done with diapers. They were ready, they made the choice and it was FAR easier than the potty training struggle I went through with the oldest.

I just think following my kids' lead on a lot of things is healthier for their development and self confidence. I'm not worried about other people, I'm worried about my children. If someone doesn't like my child's stimming they aren't someone I'm interested in knowing to begin with. And its not like I take a verbally stimming child into a movie theater or some place like that. That all has to do with just knowing your child and doing appropriate activities with your child.

ETA: Oh, and I also hope my child will be involved in dating relationships that are not so superficial as to be worried about such inconsequential things as stimming. There are far more important things to a relationship and finding the right match who will take you for who you are will be much more rewarding in the end.

[StephandOwen]

Originally Posted by AnalogWife

Almost everything I come across re:stimming includes lining up objects, that's what DS is doing with the trains, he's not setting up storylines or building great tracks, he's lying with his cheek on the floor and hooking the trains up and watching them go back and forth, back and forth. He likes them in a certain order, and retreats to them when things get stressful---like when the ECSE and the SLP are overdoing it!

ECSE = Early Childhood Special Educator

My DH very much encourages DS's train obsession and often takes him to trainyards and they look up videos on youtube--DS s them, but I've noticed a certain behavior that concerns me. As the real-life trains go by on the track in the videos----it's as though his eyes get magnetized to each and every boxcar, he watches each one zip by as his head goes back-and-forth really fast. It strikes me as seizure-like, he also does it to wheels as cars go by. Is this...familiar? It sort of scares me.

Thankfully he has developed another layer onto the train thing, he has started to "chugga-chugga" with them, giving them life...I also notice him doing it to the boxes of butter in the grocery store----it's very difficult getting him out of the display (there's like 300 boxes in there) and lately I hear him "chugga-chugga" as he's re-lining them up.

At 3 my son was just like that. He lined up his trains and stared at the wheels while moving them (not even on track, just the floor). That's ALL he did. Little by little he slowly started putting life to them..... first by taking little snippets from a thomas movie and reenacting it. Over and over and over and over again. Then came longer snippets from the movie. Slowly he started branching out and making the trains do something that wasn't part of a thomas movie. Then he started building his own tracks and playing with the trains in an almost "typical" way. But at 1-3 years he was just focused on the wheels and lining them up.

Originally Posted by surrogate

stephandowen

I have the 4yo twin of your son....i just gave away 25 thomas movies, we had 400 (no joke) thomas trains all the stuff to go with, the room stuff etc...i gave away a bunch because we are moving...but wow...

LOL! I was just joking with dp the other day that as soon as ds gives up on thomas (he's already slowly stopped watching the movies, he still plays with the trains a ton) I'm going to box up every single thomas thing we have and craigslist it all together. It will be a little boys dream

[CarrieMF]

People notice a difference but they get over it. And if a person teaches their child to handle reactions and just do what makes themselves more comfortable and better able to function its totally possible to have a visibly stimming child fit in among peers.

Yes it is possible to have a visibly stimming child fit in among peers, but it isn't always true for every child. It will depend greatly on the child but also on those peers & what they've been taught.

I work with a severely low functioning boy. He stims(hands flapping his ears & alot of monkey screetches) all day long. He is pulled out most of the day & does his worst stimming in the classroom(which is usually just at lunch time and 2 15minute periods). We've tried to have him in there longer, but the class noise is too much for him & he is too distracting for the other kids(which of couse gets them talking & increasing the noise which gets him flapping more and so on). During these times we do what we can to keep the noise level down for him & to keep his stims down for the others.

Now in his work room he can stim more because there isn't anyone for him to distract, but for him stimming seems to be more of a reaction to overstimulation & in order for him to work we do have to stop him. The stimming seems to overstimulate him too. The fastest way to stop his stims is his body sock. It calms him & he works. If we doing just time fillers he can stim all he wants unless it's overstimulating him.

What the op is describing sounds like calming playing to me. Yes it is meeting a sensory need but it isn't really stims.

What will happen to this boy when he's an adult is something that is brought up alot. It has nothing to do with whether he'll date(he won't), whether he'll get married(he won't) but who will take care of him when he is no longer in the school system. Will mom/dad(they're barely able to now) or will he be placed in a group home (should be). Will he be able to hold a job(most likely not).

[BetsyNY]

My son is 4.5, dx'd PDD-NOS and is hyperlexic. He loves letters. A LOT. Especially X. He gets upset if he can't find the X in a set of letters, will try to fit all the letters in a small container and become hysterical if they won't all fit, etc.

All of his therapists over the years have tried different approaches, and what we've all found works best is using his interest in letters and words to help him navigate the world around him. You can't restrict letters; they're everywhere!