Excessive stimming

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Hello,

I'm new to this forum and wondering if someone could help me out with some advice, because I am really worried. DS is diagnosed with mild to moderate ASD. Although he's made huge strides with home therapy, school, speech, and OT, he is REALLY excessively stimming as he gets older. He will be 5 in 2 months. At 2.5 years, he was a calm quiet baby (no unusual motor movements). Now, he's constantly doing something self stimulatory with every free second he can get. Currently he is lifting up the bottom of the shirt and waving it around and visually stimming. He used to repetitively clap all the time. Prior to clapping he was jumping repetitively. When he's watching a favorite video (he likes music and his favorite video now is Animusic) he is zipping around, clapping, and lifting up his shirt, and holding toys in front of his eyes waving them back and forth. He also has vocal stims and hums/moans when excited or overly stimulated.

We have tried a couple medications and they seem to help initially, but then fade. We tried risperdal for about 3 weeks. That's when the clapping reduced but the visual stuff began. Then we changed to Abilify and it did calm him a bit but now he's still SO excessively stimmy I'm thinking about trying something else (any suggestions?). He's also been on Abilify for about 3 weeks.

I know he does this to calm himself or when he's nervous or anxious about something, or does it because it feels good, and that's OK. But to be doing it ALL the time is really having a negative effect on me. I have told him to stop and he seems to get sad or annoyed when I ask him to stop. In public, it really sets him apart from the other kids and I would not be honest if I said it didn't bother me.

I guess I'm starting to be very concerned about the high frequency and that I feel it really hinders his learning. He's has so much potential and I would hate for future opportunities for learning and experience to be taken away or avoided because his motor movements are so severe.

Thank you for your help.

You could try hitting him with a rolled up news paper.



O wait, he is a human being...


I know this may not be what you want to hear but my #1 piece of advice is very simple:

Your son was, is, and always will be autistic. No amount of therapy, drugs, behavioral intervention plans, or anything else will EVER change that. So stop trying to force him to be normal. Stimming is something which is relaxing, and helps him to function more effectively. Believe me when I tell you that attempting to suppress the stimming hurts his ability to learn and function more then if you just let him do it. It takes an enormous amount of self control to suppress it, and hampers his ability to pay attention and learn anything else when he has to focus on not stimming. His stimming is not interfering with his ability to learn. However, attempting to suppress it will.

It is not something which you need to stop. It is CERTAINLY nothing you need to try to fix via medication. I dont know if you are aware of this, but the drugs you are giving him are designed to treat schizophrenia and bi-polar disorder. They have very dangerous side effects, and are not the sort of things you should be giving to a 4 year old simply because he looks weird.

Oops, I'm sorry, I thought I was coming here for support. Let me go get my parenting manual which tells you how to be a mother to an autistic child. Oh no, I can't find it!

Yes, he has autism. Yes, he is my son. Yes, he is the love of my life!! !! Yes, I know the meds I am giving him are risky and have side effects. But I'm just trying to navigate my way here.

No, I don't want to take away the stimming. No, I don't want to make him "look normal". Yes, I DO want the frequency to decrease. Because it is ALL THE TIME! I've observed many, many children with autism since DS was diagnosed and not one of them stim with the same frequency as DS. Not one. And yes, I know they are all individuals.

And when he is stimming, he is not paying attention or focusing on an activity or engaging with anyone slightly. He is paying attention to his shirt or the object in front of his eye.

Anyway, I am accepting, supportive, and just want him to be the best he could be.

I'm sorry but I have to agree with tracker. Your son is who he is and your going to just have to deal with it. If the stemming is a all the time thing you might want to try and see things form his prospective and try and zero in on the cause of the behavoir why is he felling the need for this more then before whats new? You making a big deal out of it just makes it worst like telling someone not to look down they always look down right? The medication shouldn't be played with it should only be used as the last ditch efford to stop your child from hurting himself not from looking out of place.My son has to be on meds or he tries to claw his own eyes out over the weather report ect. I hate ever pill I have to give him but other wise he would have killed himself with his bare hands. I can't think of a way to say this with out sounding harsh but maybe you need therpy in order to deal with your feelings it's not easy for most of us give up on what we think our kids should have been and help them be the best that they are able to be and that can be great if we are willing to let them.

Your son is not "many, many children with autism" - he is unique. To hold him to the standard of another on the spectrum is akin to holding him accountable to be "normal"... it will not find satisfactory answers for you. Some stim heavily, others deal with more cerebral distractions, but it isn't wrong for him to be stimming. And as you've already pointed out, it changes with age. Doses of heavy medications at that developmental age would be a tremendous concern to me as a parent of my own son. You've said that it is the negative effect it is having on you that is creating the problem; have you considered the effect of corralling his outlets and dosing him with antipsychotics is having on him? Learning is not just staid; my best suggestion is to find a kinetic teacher who is comfortable and capable of using stimulus as a learning tool.

For my stimming, I found music most effective. As I got older, I started playing the drums: the ideal outlet, and the ideal explanation when people would ask why I was moving, tapping or fidgeting.


M.

To add to the discussion, I've found that stimming can be relaxing and reduce stress in my life. One thing you could try to do is find time to allow stimming, away from others. When your child feels stressed, giving him/her the space to do so...alone...will help him calm down and refocus. The real trick in this, however, is getting him to realize what times are good for stimming and what times are not. It's kind of like potty training, in a way. He will have to learn when to hold in his stress and let it out at the right time. This is certainly not something a four year old should be required to comprehend, nor should you try to. I didn't figure it out until I was in my teens. Until then, giving him a quiet space to stim periodically will be very beneficial.

I'm also going to echo the sentiment about antipsychotics in a four year old. Risperdal is powerful stuff. It's good for short term gains, but down the road, it can and will have negative repercussions.

I'm an NT parent of an AS kid too and I gotta say that Risperadol and Abilify are some pretty hard core drugs that should be reserved for really DANGEROUS situations, like a child who tries to hurt himself or others.

I started down the medication path when my daughter started to get scarily anxious. She would lash out at people when stressed out and become self injurious or attack others. We got a psychiatrist and he rather blithely suggested Risperadol or Abilify. My husband and I reserached these and what we found was so scary that we wanted to try ANYTHING else rather than those- and this for somebody who was self-injuring, not just stimming. We settled on just a teeny, tiny prescription of an SSRI to reduce anxiety and lo and behold, she stopped self injuring and attacking. That behaviour was all from anxiety, which I'd suspected. So be really, really, really REALLY wary or Risperadol and Abilify, especially for something that isn't actually causing physical injury to himself or others. Psychiatrists jump on it because they are hammers and see everything as a nail. I'm glad we didn't go there.

She always stimmed too. Waved stuff about. The psychiatrist wanted us to put a clampdown on that because he said it was getting in the way of her doing other stuff. Which did APPEAR to be true. But I had a sneaking suspicion that if we put a clampdown on stimming, playdates, coloring books and Barbie tea parties wouldn't rush in to fill the vacuum. Instead (I suspected) she would work so hard on not stimming that not stimming would become an end in itself and she would focus on it (perseverate even) and become more stressed out than ever and still not be doing this "other stuff" that the psychiatrist was sure she'd be doing if she wasn't stimming. Tracker confirms that suspicion.

So I decided to let it go because I noticed that the intensity of stimming really ramped up the more stressed out she was. So I figured it was a way to deal with stress and if I tried to take it away she would be super stressed out. Other posters confirm this. In time, with just the tiniest possible dose of anti-anxiety meds and just plain getting older and more mature, she became more able to deal with stress. Now she just stims for about one hour after every school day. That makes its utility as a stress-coping mechanism bluntly obvious.

I'm glad I didn't try to put a clampdown on the stimming either chemically (the meds were for anxiety, not stimming) or behaviourally (which would have wasted all her energy on trying not to stim). Over time it has gotten less and less as she makes her peace with the world. It's an uneasy peace, but still.

If your son is stimming 24/7, he's probably in a very stressed out state right now. If you can find a way to do it, I would advise turning a blind eye to the stimming- he NEEDS it, no matter what the doctors say. To them, it looks like wasted effort better spent on playdates and coloring books. But I knew in my gut when her doctor said that that it was serving a function and taking it away wouldn't help and might make her worse off because she'd be more stressed out than ever. The playdates may never come. The coloring books perhaps will, but not if you put a clampdown on the stimming. He won't color with crayons (or whatever is your signifier of useful playing) if he's spending all his energy trying not to stim. But he very well may when he gets to a place where he is less stressed out. My daughter recently fed her dolls some pretend food. Just the sort of play that the psychiatrist tsk-tsked she was missing out on when he wanted me to put a clampdown on her stimming. I knew in my gut that she wouldn't turn to feeding dolls if forbidden to stim even if he was sure that it worked that way. Tracker's post confirms my feeling and I'm glad I just let it go and let her de-stress in her own way and in her own time. Sometimes the urge to DO SOMETHING can lead you down a really negative path that actually makes things worse.

Murrie,

I KNOW how you feel, but let me give you TWO REAL anecdotes that can make you think....

1. When I was little, at one point, I would sleep ALL THE TIME! My mother found that aspirin would keep mme awake. She kept giving me aspirin. She took me to several doctors! You want to know what the cure was? And this is the TRUTH!! !! ! To STOP giving me aspirin!! !! ! The doctor said that it could have DESTROYED MY KIDNEYS!! !! !! I ended up healing from it.

2. I was recently perscribed a drug to help lower my blood pressure a little. A LITTLE!! !! !! Do you know what happens if I stop? My blood pressire SKY ROCKETS!! !! !! !

Stimulants often calm people with ASD or ADHD!

Diabetes can be caused by high glucose levels. USUALLY, people have problems with high glucose. WHAT is the cure for hypoglycemia that often follows? GLUCOSE!

Do YOU know how those other products work? Sometimes what SEEMS to help actually HURTS and vice/versa.

MAYBE if you leave him alone, and give him time to relax, his stimming will normalize.

Unfortunately, I've discovered, as a parent, that we often have to reverse our thinking. Our kids stim to calm themselves, and your son is at a very stressful age, full of transitions. You can deal with his environment so it is less stressful to him, and you can allow him to relax in the only way he knows. It WILL get better, I promise, if he is growing and thriving and his needs are being met. I think my son's stims climaxed around 3rd grade, and then they slowly started to disappear of their own accord. Not all, but the most socially inappropriate ones did go away without any prompting from us.

We used to try to squash it all because it was so annoying to us, but after reading forums like this one, I decided to experiment with simply allowing it all, subject to limited time and place conditions. What I noticed was an immediate and obvious decrease in meltdowns and tantrums. Given a choice between him wrecking our furniture while pacing (his favored method of stimming) or having meltdowns, I easily chose the former. He clearly is more happy when we let him be who he is. And he's been THRIVING.

I know people here can be blunt, but most of the posters are Aspies, and Aspies ARE blunt. Once you get used to that, you'll realize that the things you are hearing from them are really important to know. It will make a world of difference to your life with your child. Don't let it scare you off; these posters think like our kids do.

Basically, I agree with the other posters, but I will also assure you that it WILL go down; it won't always be like this. He'll learn to channel and limit; he'll find the stims that least annoy others while being effective for him. He'll learn to chew straws instead of his shirt, and so on. Be patient, give alternatives, give time, and be understanding.

Good luck. We have great kids. And welcome to Wrong Planet.

Last edited by DW_a_mom on 05 Jul 2009, 1:10 pm, edited 1 time in total.

Thanks DW_a_mom, that was a nice post. It's nice to hear that it will change. I can spend my whole life worrying about him or I can just get on with it.

He does love music very much and it calms him. He can listen to whole albums at a time. He just loves guitars and drums.

The meds are going bye-bye.

We had a wonderful time at the pool today. He swam so well and they had a DJ there (it's July 4) and he even did a little dancing (well, jumping)

hi Murrie,

I'm glad the meds are going bye-bye. Like everyone said, meds should be reserved for serious issues, stimming is not one of them. I do have a question for you..are you doing any sensory diets at home? I don't think it's enough for a autistic child to get an hour or less of OT once or twice a week. My son will stim a lot when he's bored. If he's sitting in front of the tv, he will start chewing on things. When he wakes up in the morning he starts making noises with his mouth, I guess it's just his wake-up routine, similar to myself drinking a cup of coffee in the morning. I just try to get him to be as active as he can be throughout the day. Lots of running around, lots of jumping, lots of pushing and pulling games, lots of crunchy foods, lots of bear hugs etc.

When he's excited about his show and he's running around and making noises, go grab him give him a big hug and tell him to say, "Mom I love this show!" SHOW him how to act or what to do to say that seems more appropriate. I know he will always be autistic but you can also teach him skills on how to "fit in" in a NT world. Let him know what he is doing is not wrong or shameful, but there's also other ways to show that you are happy, bored, stressed or frustrated.

Do you really understand what the drug does however? Have you taken it yourself? I was recently prescribed abilify for my asociality and lack of affect. I can tell you that if i had to choose between having a leg removed or being forced to take abilify my entire life, i would choose to lose the leg, because i would be more functioning having lost a leg than taking abilify. I'm not trying to judge you here, i'm sure you had good reason to place your child on drugs, but the list of side-effects doesn't get anywhere close to describing what the drug does.


Children are not toys, and people are not meant to make children in their own image. People are individuals.


I'm sorry to hear this, and i agree that his stimming needs to be brought down to a level where he can learn as well as possible. Do you think you could try and give him some other stims? Many people on the spectrum rock their body back and forth repetitively, it's not very disruptive to others and would allow your some to learn just fine i think.

Good to hear you had a good day with him sorry if my earlier post came off as harsh, it sounds like you are just like the rest of us trying to do our very best for our childern.
Michjo if you'd bother to read the rest of this thread you'd see that and stop jumping all over Murrie. I don't know why you feel the need to pick her apart but I find it whole uncalled for.

I'm honestly wondering if we should add a big stickie instruction, "Read the Whole Thread Before Posting!" It happens so often on this board that a new parent will post in a way that upsets our AS readers, and it takes a little back and forth before everyone realizes they are actually on the same page and reasonable conversation occurs. Then someone new skips all that and gut reacts again, upsetting the parent a new. It gets frustrating to watch.

I realize that complaint can be made on most boards, but here it seems especially important, because the combative responses can quickly alienate parents that do need to hear what it is like to someone who is AS. Ultimately, the one that hurts will be the child, because the parent misses out on the opportunity to learn something useful. Parents won't stick around to feel attacked; its as simple as that.

Keep it in mind. I run across these parents watching their autistic kids and saying, "oh my god, what will happen to him when I'm gone!?" when the kid is only five or six years old. We do mature. Just not necessarily on schedule. And often, it seems, with long delays followed by startlingly rapid progress.

Hello,

Thank you for your post. I have an aspie son who stims a lot, so I can sympathize with what you're going through. We have been told that it will eventually subside or go away altogether.

My son runs and hums and is flapping his arms more and more. He has just added a nice shrill squeal to it as well. We went to a restaurant a couple of months ago and while we were waiting to be seated he let out a squeal that literally stopped everyone and the whole place was looking at him. I was not embarrassed of him or of the situation but I was hurt. I guess I don't really know how to articulate why it hurts, but it just does. For some people it may be hard to understand. Like you, I love my son more than anything in this world and it just plain hurts to know that some things are just going to be harder for him.

My son is still young so I haven't really tried to do too much about it. He has two years until he starts Kindergarten (he's 3 1/2) so I have been told we have two years to try and teach him some other ways to stim or teach him to do it on his own at home, as people have stated on here. We have tried sensory brushing and it seemed to work at first, and he LOVES it, but then it seemed like sensory overload, so I may try it again but not as often.

I wanted to share because I wanted you to know that you are not alone. Most days the stimming doesn't bother me, but I will be honest, some days it annoys the hell out of me, sometimes hearing your kid scream and hum for an entire day can get on your nerves, it doesn't mean I love him any less, it means that I am human. Some days it doesn't annoy me, some days it makes me incredibly sad, for me it's a reminder that my son has no idea how to have a social conversation with me, or answer any question except a question of his wants or needs.

Hope my post helps you, sorry to go on and on. Hang in there!