My 5 year old daughter has been hand-flapping (literally flapping both of her hands for one to a few seconds at a time) since a very early age. It was kind of cute when she used to do at 1 or 2 years old as if she was a little bird or butterfly trying to take flight. Of course, at that time we knew nothing of autism and that hand-flapping is one of its tell-tale signs (but not necessarily a definite sign of it).
The “Silly Dance”
Hand flapping may occur in combination with movement, such as bouncing, jumping and/or spinning. My daughter usually hums while she flaps. Occasionally, she’ll also kick her legs but that has waned. We never really pointed it out to her and she seems to have never noticed herself doing it. Once we tried to get her to realize what she was doing and her reaction was like “I don’t know what you’re talking about”. Recently she shocked us when after hand-flapping she said “I was just doing my ‘silly dance’”. Not only were we taken aback by this unexpected self-awareness but I immediately got hung-up on the name she had for it. I seriously doubt she came up with it herself; someone at school must have. She flaps constantly – is this an ongoing nickname? Is the name supposed to be funny or mean?
I’ve recently met some adults with Asperger’s Syndrome who constantly “stim” (self-stimulation) – flap, tap, bite things, rock, and make various noises – and it was, I’m ashamed to say, an uneasy and uncomfortable situation. I simply wasn’t used to seeing it and it was very distracting. Aside from realizing that I need to be a lot more sympathetic, it seemed like we should probably address this sooner than later in order to help her chances at social acceptance since the world is filled with people who are unsympathetic to those that are different.
Why?
Autistic stimming behaviours are self-learned and are used to either increase stimuli or to help decrease or shut it out. These behaviors along with the testimonies of various autistic individuals, have led researchers to believe that those with autism are either severely over-sensitive, under-sensitive, or both to outside sensory stimuli (hence the term “sensory integration dysfunction”). Typically, hand-flapping occurs when the child is happy or excited. I used to think my daughter also did it when she was anxious although I don’t think that is true anymore. There could be other reasons for it also.
A profound first-hand account of hand-flapping is featured in an article called “A Boy, a Mother and a Rare Map of Autism’s World”. In it, Tito Mukhopadhyay, a 14 year old boy from India with severe autism explains why he flaps his hands like this: “I am calming myself. My senses are so disconnected, I lose my body. So I flap. If I don’t do this, I feel scattered and anxious. I hardly realized that I had a body. I needed constant movement, which made me get the feeling of my body”. Tito’s nervous system receives so little input that he cannot sense a connection with his own body. His hand flapping is his attempt to calm himself and gain a sense of his body’s existence.
Approaches
If the goal is the try to reduce some of our daughter’s more socially inappropriate behaviors, then what should we do (or not do) about her hand-flapping? She obviously needs to do it and it would be cruel to deny her this. Does that override any type of intervention?
What follows is a brief discussion of three different approaches I have comes across. Since all kids are different and have different needs and in varying amounts, I stop short of concluding what is the best way to deal with hand-flapping since what works for one person may not work for someone else. It’s up to you to figure that out and to decide what you think is appropriate…
- One Occupational Therapist (OT) said that she will probably grow out of it. Given my experience with the adult flappers, I’m not completely convinced of that. Nonetheless, the OT felt that eventually social pressures will force her to change her behaviour on her own. This isn’t very comforting to me either. Although some kids on the spectrum will go through life mostly oblivious to social cues or pressures, my daughter isn’t like that. I’d prefer to intervene and to try to help her than to do essentially nothing and leave it up to insensitive kids to force her to change.
- A second option, suggested by other parents of autistic kids, is to try to manage it by setting times and places for when the child is free to flap and stim. I could be wrong (it happens a lot), but I don’t think this would be appropriate for my daughter because I think it is a real-time need for her and not something that she can queue up for a while to deal with later. You can check out this story of how trying to manage hand-flapping led to behavioral problems for a child.
- Finally, another OT suggested that we start getting her to recognize that she is doing it with the ultimate goal of getting her to change her behaviour to a more socially-acceptable alternative. This sounds reasonable but I’m a little afraid that I may do a poor job of it and make her self-conscious or lead her to an alternative behaviour that doesn’t fully satisfy her need. Could she really undo 4 years of flapping and be willing to give it up for, say, a squeeze toy? I think the key to make this approach work would be to take both steps very slow.
Personally, I’m leaning towards the third approach but I want to make sure I got my game plan all figured out first. For example, I need to come up a nice way of pointing out to her that she is flapping without making her think she is doing something wrong. Also, I would need to experiment with different alternatives to see if anything reduces her flapping. I’ll let you know how it goes…
Final Thoughts
Certainly, these approaches do not represent all the possible ways to deal with hand-flapping. I’m interested in knowing what others may have tried – successfully or not – to deal with flapping or other types of stims. For sure there will be many who simply believe that doing anything at all would be cruel. As Eugene Marcus says on his website: “This whole series of ‘treatments’ designed to make me look more ‘normal’ didn’t succeed in doing that, but it did succeed in instilling shame and fear.”
My daughter does this too. I got the book “Autistic Planet”. It’s a kids book. You can buy it but I just requested my local library to and they did!
Towards the end of the book it mentions flapping. It helped my daughter see that other people do too and it’s not just her. Then we discussed ways of dealing with it.
She liked the idea of when she needs to flap she puts her hands in her pockets. And of course at home she can flap all day long if she wants. So we have to make sure all the pants/skirts/shorts we get her have pockets.
She is 9 now and her teacher said that she never notices her flap. :)
FXSmom – that’s terrific. I’ll check out the book. Thanks!
Don’t you dare try to stop her from flapping! Why can’t you just leave her alone? Who cares about being socially appropriate? How could you take that right away from her? I’m 16 and I flap all the time. When I flap I get a feeling of overwhelming joy and creative thoughts and images come from no where. My brain functioning becomes super fast and I can create perfect images or beautiful sentences in my mind. That’s how I’m writing this post. If you could do this, you would not give it up to be socially appropriate. I was diagnosed with Aspergers, but I think its rediculous. Some people are just different. It is certainly not a disability or a disorder! Social apropriateness is for conformists. It is not the innocent, amazing, and free children who should change to meet society’s standards. Society should change! Society is full of conformists, which would change at the prompting of a few leaders and pioneers. Most children grow up not knowing who they are, going with the flow, and following the crowd. So-called “autistic” children grow up unchanged by the pressures of society. They don’t mirror the behaviors and thoughts of everyone they are around.
Unless they have cognitive deficits, autistic children do not need intervention. I had a speech pathologist giving me silly little social skills lessons weekly in elementary school, but I didn’t pay attention to it or try to change.
My dad is always saying that I need to overcome my “disorder.” He says that social norms are naturally correct, but I am blind to it because of my defecits. He says that my feelings about it are wrong, because something is wrong with me. Once, I walked in on him and he was flapping. I said, “You flap too.” He was extremely defensive about it and claimed he was just being silly. He is so rigid in his interactions with me, trying to make me like him and thinking he is always right. He thinks his life is so normal, but in truth it is unnaturally regulated, made to fit the prototype of “normal” down to every last detail. I will never forgive him for the way he thinks of me and the way he tries to change me. Maybe you should examine yourself for autistic traits. It is supposed to be based on genetic factors… If you found that everything you felt, everything you wanted, and everything you thought was, in the eyes of a neurotypical person, simply a trait of a neuorlogical disorder, your opinion would hopefully change.
Brainwashing children into thinking they have a problem when they are really just free and independent and highly intelligent is wrong. I know you are trying not to make it that way, but even if you try to put it mildly, she will know. Long live Awe-tism!!!
I as a Grandmother was so inspired to read your reply! My bright beautiful grandson of five years ,will have the freedom to be himself, always.Nice to read at sixteen years of age you’ve made it in “our” world. If the people around him don’t understand him they really don’t need to.I just hope and pray life will be good to him,you and others out there who are not all “the same”. My hope is that people will not be cruel to any of you.Thank you for your words.Good luck in your life and you relationship with your father.
I like your post. My son is 10 and flaps his hands and jumps up and down when he’s really excited or inspired by something and has for 5 years. I see this as an expression of joy and creativity. I don’t see why I would need to devalue this expression or try to change it.
Hello NothingsWrongwithMe,
I am an occupational therapist working with a three year old boy who is a twin and who is non verbal. He not only flaps his hands but his feet also when he is excited however I have been noticing he flaps when at the snack table waiting for the teacher.
I was looking for more insite and understanding of why he is hand flapping so I can reach him and provide him with tools to express himself so he can relate to his peers more.
I was very impressed and touched by your article especially when you stated that when you hand flap you see perfect images and beautiful sentences in your mind and I thought of “my” little guy; if maybe he is doing the same.
It gave me a different enlightened positive avenue to “walk down” along side of him.
Thank you! :)
Kathy
Dear NothingsWrongWithMe,
You are wonderful. I have a 6-year old daughter who recently started to “flap” only when she’s really excited, and usually when she’s doing a drawing that she loves. She always looks immensely happy when she’s regarding her drawing and flapping, and when I asked her what she was doing, she said “making the objects move.” She was assessed at 4 for a slight “fine motor delay”, and they also found her IQ to be unusually high. She’s barely 6, but reads just about anything, even bits of the NYTimes. She’s been getting negative attention lately for the flapping from OTHER PARENTS, not the kids, which infuriates me. She’s sweet, smart, kind, imaginative, creative, playful and curious and they look at her (and then at me) as if something’s seriously wrong with her.
She likely has Asperger’s syndrome, as we’re fairly certain it runs in my husband’s family (and perhaps in my own, too, to some extent), but it would be difficult to diagnose. I just wish more people thought as you do; that people don’t have to fit some mold of “normal”. Even Sophie says to me, “Are we supposed to behave like robots?” She takes people aback often for her insight, at just 6 yrs. She says the most remarkable things, and I’m humbled – often.
Hopefully your post humbled others, too. I wish you the very best!
yeah you need to calm down. get off of your high horse. if you’re so accepting of neurodiversity, why don’t you accept a man trying to help his daughter? he’s obviously trying to go about it the best and least harmful way he can, without making her feel disordered, etc.
i’m eighteen and diagnosed with asperger’s syndrome. i hand flap when i’m excited, when i’m upset, when i need to block things out, and when i feel disconnected from my body. i hand flap because i used to hit my head on things but that was harmful [neurodiversity be damned, i'm not going to spend my life slowly developing brain damage.] so i switched my main coping method to hand flapping. i still head bang when i’m really bad sometimes but hand flapping is my go-to.
i’d love to be able to stop hand flapping and go for something more socially appropriate. my friends are the most amazing and accepting people [we treat hand flapping almost as a secret language] but not everyone is like this, and as i am working toward licensure in special education i need to be able to provide a good example AND have good social skills. and i WANT to, because i am so unhappy being disconnected. i’ve seen so many kids struggling to connect and being so unhappy when they are stopped to by autism spectrum disorders. i don’t want to be like that, and no way will my students be like that.
if you’d like to spend your life disconnected from people, well you’re obviously cognitively aware enough to make that choice. but don’t jump down the throat of a man who is trying to give his daughter opportunities, instead of letting her shut herself down. if later in life she chooses that, that’s fine. but she needs to be able to HAVE that choice. she can’t choose if she doesn’t know what it’s like to be able to connect in a real way.
I am 53 years old and have been a happy hand-flapper my whole life!! I’m well aware that I have a unique brain, and I really like it. I did very well in school, have always had a lot of friends, and am a very creative, deep-thinking person. I was lucky and was able to follow my heart into some very exciting, adventurous occupations, and won many awards for creativity. I am happily married and have a wonderful child.
No one in my life ever called the hand-flapping to my attention or made me feel bad about it. I guess I mainly hand-flap when I am alone, although when I’m really happy or excited or inspired, it just comes out naturally. Trying to stop the hand-flapping would be like cutting out part of my soul, or like telling myself not to feel joy!
Another habit I have is hand-rubbing. That one I find myself doing as an expression of excitement OR anger and frustration. It is more involuntary, and I’m often unaware that I’m doing it. Its never caused me any problems though. If I wanted to stop hand-rubbing, I don’t know if I could. And to be honest, I would consider it a huge waste of my time when there are so many meaningful things to focus my life on.
So I thought I’d let people know that hand-flapping may be a good thing in some people’s lives, and perhaps it excites beautiful parts of the brain or spirit that would otherwise lie dormant.
“Be yourself, but be your best self. Dare to be different and to follow your own star.”
I have a four-year old son with high functioning autism. I find him to be very intelligent, funny, and loveable. He hand flaps and jumps a lot when he is excited. I have to admit I worry about what people are thinking when he does this. What words of advice can you give me?
My son is autistic and before I was embarassed about the hand flapping but now I. Know its what makes him comfortable and does no harm to anybody. He doesn’t care about what other people think so why should I. He’s 5 and making progress and that’s all I can hope for.
my daughter is diagnosed as autistic and she is 31/2 years old now. She flaps all the time. Its very intense. She is not able to concentrate on any other things that are going on around her, when she does it. So, since it affects her ability to interact with us or engage in any activities, I try to stop her from doing that. Do you guys think, I am doing wrong. Any suggestions from you, please let me know.
I am a 20 year old girl and I have been flapping my hands since I can remember. My parents tried to stop me from doing it with shame and fiscal force (not helpful…). I still do it today and I think that I will always do it. It really doesn’t bother me that other people I know don’t do it and its not the “norm.” I use to flap very freely but I have somewhat changed it to a more controlled flapping where I hold my hands in a fist except for my index fingers. This is just as satisfying to me and is less distracting and uncomfortable for others around me. People who don’t know me or flapping think that I’m doing some sort of “air drum roll.” Admittedly it is not perfect and many people do make fun of me for it and others feel uncomfortable around me when I do it. As a child I was made fun of for a lot of things and flapping was just one off them, because of this I have become very resilient and I do not mind in the least that I flap. I like doing it and it is very painful to refrain for it.
This being said I do not feel that I flap as much as I used to because I have found that if my hands are constantly occupied with something the urge is less frequent. Some things I find help are doodling, knitting, origami, or other repetitive hand motions that I can do without conscious thought. I did this all throughout high school and college. If this is helpful most teachers will allow it if it is explained to them.
Alexandra, Thanks for your story. I was wondering if you were diagnosed with aspergers or any other syndrome? I am 38 years old and I have been hand flapping at a very young age. I learned to do it in private and not in front of anyone else. I am looking to completely quit this habit. I can’t seem to find any resources. I do not have any diagnoses. I have a normal job and have many friends. I was teased as a child for self esteem issues but not for hand flapping. No one in school knew I did this. I didn’t do it in front of anyone. Of course my parents knew and maybe some cousins because when I was younger I didn’t hide it. I have been really good at hiding it from everyone all of my life. Not even my boyfriend’s in the past ever found out. I do want to quit.
I am thinking that maybe a neurologist might be the answer to the problem. When I was born I was breach and pulled out by instruments. I am thinking I had some brain damage at birth. Hopefully, a neurologist would know what part of the brain causes the hand flapping behavior.
I am currently seeing a therapist and trying cognitive behavioral therapy with her. She is introducing EFT. I am not sure what it stands for. I think it is called emotional feeling technique. I may be doing this behavior for several reasons. I believe my Dad may has asperger’s syndrome and he was very abusive to me and my mother. So, I may have this problem because of Post traumatic stress syndrome. My therapist thinks I started this at a young age because I had a traumatic experience happened and I tried to calm myself down. This is a technique I learned to keep myself safe and to emotionally and mentally leave the situation I was in. I think she might have a point. I remember when I was 2 or 3 when my Dad tried to strangle my Mom. My Mom told me to call the police and I didn’t know how to use the phone. I think I started hand flapping shortly after this situation. My Mom can’t remember what age I was when I started. She didn’t know where to send me for help. She told my doctor but they didn’t know anything about it. Of course I see why I never had any help because I am trying to help myself now and I am having trouble finding some resources as well.
If you know anything please let me know. You know there are so many addictions out there today. There is even gamer addictions/stimulus addictions out there. This hand flapping behavior has probably been an addiction for years but no one knew about it because people were ashamed to mention it. I am glad that you posted your information. I only see stuff about kids not adults. I wish someone could help.
I am commenting on my previous comment.
I also wanted to mention that I did quit hand flapping before for a year or two, (twice in my life) on my own. When a stressful situation came back up I started the behavior all over again.
It does seem to take a lot of time out of my day when I am alone. I like to keep busy so I won’t do it. When I do it I seem to be in a trance and I loose sight of what time it is. I think I am hypnotising myself. It is such a habit I don’t even know when I am starting it. I don’t consciously think about doing it. If I am anxious I start it and then at times catch myself doing it. I get so mad at the time I waisted. I should have been doing something else. I hate to have to explain to someone what I did all day because I waisted it by doing something inappropriate. I make up excuses to what I was doing.
I also have trouble waking up in the morning and with time management skills. It seems to take me extra long to do something and other people can do it faster. I have also been diagnosed with B-12 deficiency. Attention Deficit disorder (ADD) and B-12 deficiency symptoms are similar except with B-12 deficiency you get tired and ADD you don’t.
I am very interested in finding a place that wants to do research on this and find a cure for this behavior. I am 38 years old and I want to quit. I think I have managed it pretty well to where I can live a normal life. However, I feel it does get in the way of other things. I can do so much more if I could get rid of this habit. I feel that it is related to an addiction more than anything else. It also may have a neurological factor base to it.
I believe there is also a medical factor to the behavior. I have been extremely tired since 2006 and have to take B-12 shots to feel normal. I also have adrenal gland issues for all the trauma I have been through throughout my life. If you read up about addictions people get a dopamine high from them. I believe that the same thing happens with the hand flapping behavior.
Overall, I have many theories to why I do the hand flapping behavior. It can either be a neurological, psychologica/addictive behavior problem, or a medical problem such as a vitamin deficiency/chemical imbalance. I don’t think anyone has researched the neurological side of it or medical side of it much. Maybe we are all missing something with this one.
Please if anyone knows anything I really would love the information.
Thanks,
Sam,
My 4 year old son sounds like yours. We had him evaluated, and they didn’t notice a thing, then I had him playing in the corner & got him to “flap”, and the evaluators did think it was unusual, and on my suggestion decided it might be a sensory integration issue. What tends to set him off the most is any kind of flowing water. When his immune system is down (has a cold), or he is tired, I notice the flapping and mouth movements he does get more extreme.
Aspiring Dad, thank you for speaking to the exact question that I have. I have waffled on these different approaches – fearing that if I just let it go, the flapping will be second nature & harder for him to control later on. My son has not been diagnosed with anything other than a suggested immature neurological system (pediatrician).
Hi,
I have just found this website as have been going down various routes trying to get help for my little boy who is now 3 and a half.
We have various pediatrician assesment which have had an outcome of the hand flapping being ‘Steriotypies’ and that he will grow out of it.
The most recent one though has highlighted he may be on the asbergers spectrum.. this has been a difficult one as although he is a bit shy I’ve only noticed the hand flapping which is brought on by movement.. water running.. automatic doors.. dvd drawer opening & closing. He is currently on a 9month waiting list to be assessed !!
I was realy just wondering if there is anyone who has had a similar experience and would be willing to offer us advice.?
Hi Kay-
I don’t know where you live, but in my area (Phila.) it is an 18 mos. waiting list to get your child evaluated by a Neurological pediatrician. We knew we didn’t want to wait that long, getting a diagnosis is key-because then you’ll get your son services. We went to a private, very well respected Neuro-got in within 2 wks (private pay only-but we did get a large portion reimbursed by our insurace company)-smartest thing we ever did- time is critical. Our son (now 4.5yrs old) got services right before he turned 3 and he is a changed boy-he’s amazing-early intervention is key. The only thing that makes our son stick out is the occasional flapping-which is what brought me to this website.
Sue
My 26 month boy flaps his hands when he is excited.
He is very charming, social, makes good eye contact, follows orders and I never felt he is in his own world. He has a little delay with his speech but the last two months he makes big progress (also makes two words phrases).
Can only hand flapping considered as an evidence of autism????
Thanks
I would get him evaluated by ‘early intervention’- I know in PA its free- they’ll give you an evaluation- they are not qualified to give you a ‘diagnosis’ but its a good place to start. If you still have concerns I would get him to a nuerological pediatrician-asap – time is critical. As a mother it’s hard to ‘evaluate’ your own child-I thought my child had good eye contact too, but he wasn’t generalizing-he also wasn’t playing with the other kids- more parallel play (still at 32 months)-tough pill to swallow- but he’s an amazing 4.5 yr old now- once we got him a diagnosis we got awesome services….
I mean a “neurodevelopmental pediatrician”….
My son has been flapping since he was 3 (he is nearly 8 now) & although people have suggested re-direct it into something else we don’t know what? What is going to give him the pleasure that the flapping does?! He enjoys it & he also makes a sort of ‘chanting noise’ at the same time but has anyone got any suggestions about what we can do instead? Sometimes he’s so bad you do just want to tell him to shut-up & clam down but we know that’s not going to help him.
My five year old has been “flapping” for about three years now, and we have yet to get a diagnosis from his pediatrician. My husband had severe ADHD and his school counselor has suggested that he might have a form of add/adhd that might also result in stimming. I am really confused by all this and truthfully heartbroken! I read Jenny McCarthy’s book and my son never had any other noticeable “problems.” He began walking at 7 months and talking very well shortly after. He was like a litle ninja in sports and makes friends easily. He is affectionate and very kind and social. So, I’m very confused because I have friends wit autistic kids and sometimes I think they just want me to “join the club” rather than give me an unbiased opinion. I just want to know what is happening with my son. His school psychologist said his history isn’t in line with Aspergers or general autism, but the stimming thing is really a key thing. She also says that stimmign also occurs with adhd kids and since there is a history, that might be it. When he is at school he acts very differently than he does at home. He takes forever to do his school work and just kind of stares at the other kids. He seems scared, but at home he does his school work fast, sometimes he needs my help, but for the most part he does his own work. He didn’t have pre-school, so this is a new experience for him and he has only had three weeks of school. The counselor thinks it might be overstimmulation-add. That could explain why he is different at school, but I just don’t want him falling through the cracks by a misdiagnosis. He is bright and funny and such a beautiful child, and I just need help fast, so I can help him. Please let me know what you guys think!
Wow! Your story sounds so similar to mine. I am wondering if you have an update? My 7 year old daughter has been flapping her arms ever since she discovered she had arms! My husband also had adhd, as did his brother mother and cousin. I feel, and my dr. does too, that my daughter’s school is looking for a diagnosis of autism. We have been fighting the school for 2 years now. She also seems to act completely different at school than she does at home. Over the summer holidays, the hand flapping stops, only to start up again in September. At school she has fallen so far behind in learning, that they have suggested she may have a learning disability, yet once I started working with her at home, she catches on very quickly. She also takes forever to complete work at school, and sometimes she doesn’t even finish her work. Yet at home she has no problem. The school has tried to diagnos her many times. The first “diagnosis’ was add, then it was autism, now it is sensory integration dysfunction. I am also lost and heartbroken. I think she’s just a normal a little girl who gets distracted at school, yet I can’t help wondering. I find myself analysing ALL of her behaviour because I am so worried, yet my dr. says leave her alone. I know she’s not the “average” child, she just seems to have inherited all these little quirks from so many family members. I would like to know if there is anything new in your situation. Best of luck!!
My son, 6 1/2, recently stopped flapping after doing so for about 1 year. He never flapped as a baby or toddler, but all of a sudden he started just after his 5th birthday. We cannot think of any triggers that may have brought it on. He flapped always when he was running around and excited. His language skills are normal, and he made it through kindergarten, though with some transition difficulties the first few weeks. He stopped flapping this spring. I don’t know if I should take this as a good sign? He is definitely a unique and challenging kid, but when I read about Asperger’s, he doesn’t fit the whole picture (he makes normal eye contact, is not clumsy, seems empathethic, though he does have some social awkwardness.) I keep hoping it is just immaturity, but I think this will be a make or break it year for him when he has to face the structure of first grade.
Thank you for your very insightful description of your daughter’s situation and your thoughts on what to do about it. I’ve appreciated the replies that others have written. Alexandra’s comments, from the point of view of someone who actually grew up hand flapping, were very interesting and reassuring. I thought I’d add to the list with a description of our daughter.
Our 9 1/2 year old daughter has a real habit of flapping her hands when excited. She frequently opens her mouth VERY wide when she does this. The overall effect is socially inappropriate and unsettling. On one hand, it’s nice that she’s such a happy and enthusiastic child, but my husband and I are worried that she will encounter difficulties in social situations. She isn’t very concerned about it, even though we’ve told her that others might think it looks strange. We have been working with her for 2 or 3 years, gently reminding her to “quiet” her hands or clap or put them in her pockets. Nothing has worked. In fact, when she’s excited, she will resume hand flapping almost immediately after acknowledging our correction. She is very bright and loves social situations. She LOVES parties. She has a vibrant imagination and can create stories or imaginary play situations that are interesting and detailed. Sometimes, she dreams up such grandiose ideas that she is disappointed when she learns that they can’t actually be done (like the time she wanted me to build a “treehouse” in our backyard that was exactly like Hogwarts Castle from Harry Potter, complete with stone staircases!)
Other than the hand flapping, we have two additional concerns. We’re not sure if these are related.
1) First, she often finds it difficult to hold eye contact with people, even though she’s engaged in conversation with us. That isn’t to say she *can’t*, because I’ve seen her hold eye contact many times. On the other hand, if there’s a mirror or window nearby, she seems completely unable to pull her gaze away from her own reflection when she’s talking to us. We can remind her to “look at the person you’re speaking to” many times, but her eyes keep sliding back to her reflection.
2) The other thing we worry about is her reading ability. She is learning to read, but it has been a challenge. At present, she reads at a Grade 2 level. She loves books, and her comprehension when read to is excellent, even for very advanced literature. She is a whiz at math.
We homeschool our kids, so there really hasn’t been any “professional” contact with respect to the hand flapping. None of the disorders we’ve read about seem to fit our daughter. We have considered discussing this with our family doctor, to see if we should be referred for screening or diagnosis, but we are reluctant to enter the world of labels, etc. if there is no clear solution. So far, her sense of self is intact. We really want to keep it that way.
My daughter is 10 and hand flaps. She started around 3 or so. She also is gifted. So she doesn’t have any problems academically. She’s been diagnosed with stereotypical movement disorder and the neurologist said don’t try to make her stop. I try to distract her, but she’s aware of what I’m doing and gets upset because she’s embarrassed. Her school don’t seem to tease her, but it’s a small school. I tried when she was smaller for her to sit on her hands, and that turned into a new movement – pushing down to the side of the body on the floor. So, you have to be careful. There seems to be a need for the movement to process information. I just worry like you probably do how the world will view her. She has friends and loves to interact with others, but people can be cruel.
My son Alex sounds just like Rebecca’s 9 year old daughter, we have removed many of the mirrors in our home because they are such a distraction, he seems physically unable to break his gaze. He also has a habit of making very strange expressions when he is admiring his reflection. I am so happy to know he is not alone.
Alex’s flapping began when he was a baby. It started out as lifting his hands up to the sky and looking up and just twisting the hands around a bit, it looked like he was praising god or something. He’s now 6 1/2 years old and is a full blown flapper, he does it so hard I’m afraid he may end up with wrist problems. He opens his mouth very wide in a way that he only does when he is flapping. It is not attractive. I have tried to gently discuss the inappropriateness of the flapping with him, but it seems to be the ONLY thing he doesn’t want to talk about . He will stop when I tell him to, but then starts again a few seconds later. It is frustrating that I can’t help him to control it. His flapping is a very dramatic display, Iwant to help him before his confidence is affected by cruel childrens’ teasing.
Alex has been evaluated for Autism, but they said he doesn’t have all of the charecteristics. He flaps, has trouble with eye contact, and has just recently started playing with toys instead of just putting them in a neat little row. He did not talk until he was 3 1/2, and did not respond to his name until 2, and sometimes still doesn’t. I didn’t know anything about autism, and his old Dr. didn’t seem concerned, we have a new one now. He is very good at math and puzzles and has an exceptional talent for video games(he is obsessed with them), but is having a really hard time learning to read, he has good motor skills,and balance, and is not clumsy, has some social skills, and is learning at an acceptable pace;he actually seems a lot better than he was when he was younger,but the flapping is really bad. He was recently diagnosed with ADHD, but I’m not so sure. The meds help with focus and lessen the emotional outbursts, but they seem to numb my happy flapper, he doesn’t like it, but I’m afraid without the meds they’ll put him in special- education at school.
Any suggestions?
I’m surprised no one has brought up fragile X syndrome. Fragile X kids often flap. They are often social, although sometimes with a difference. They are often friendly and bright. They often have ADHD. In fact ADHD is very common with Fragile X kids. Fragile X is also diagnosed by long face, ears that flare away from the face, prominent chin. However most of these facial dimorphisms don’t show up until the child is 8 or older. And some children don’t have the dimorphisms – especially girls. Look into it because it has consequences for the whole family and subsequent families. Many times an older less effected sibling is only diagnosed after a younger more severely effected sibling is born. Fragile X is not a rare syndrome.
I have a 3 year old daughter that has been flapping her hands since she was 6 months old. She opens her mouth while she does it and it seems she doesn’t realize what she is doing. Her dad and I ask her what she is doing and she says I’m excited. I think she got that from someone telling her that. I’m so afraid that she will continue to do this when she starts school and I don’t want kids teasing her. Honestly my heart breaks at the thought of her being made to feel different. She is so bright and beautiful I don’t know what to do. If anyone has any advice on how to correct this or what it might be please get back to me.
My daughter is 3 and I can’t really say when I first noticed the hand-flapping, maybe around 1 1/2 – 2 years old. I really didn’t think much of it, I still don’t entirely as she doesn’t seem to exhibit any of the typical signs. She’s extremely intelligent, she is a wonderful conversationalist, she’s a bright and healthy toddler. I’m not worried at this point as she’s on track developmentally, I’m hoping it’s just a phase that she’ll grow out of, but it does nag me a little in the back of my mind when I see her do it. It only happens when she gets really excited about something like a tv show, finding her favorite toy, etc. I think for parents in our situation, the best thing to do is just keep a close eye on it and step in when it seems to get worse.
Thankyou for this blog and the comments from others…how reassuring. My son has been flapping since he was about 2, and he is now 71/2. I was going to get him assessed when he was in preschool, but because he was happy, functioning and cognitively so advanced, I chose not to. But, after our recent teacher interview, we are reconsidering getting him assessed for Aspergers. The teacher thought our son’s hand flapping was based on anxiety about his written work. She couldn’t be farther from the truth. Our son flaps when excited. Before entering Kindergarten, I spoke to him alot about his arms and encouraged him to try something else such as pulling on his pants, hands in his pocket…,in order to not be teased. Then I realized I was not accepting him for who he is, and I changed my tune. He told us that he couldn’t help it. One day when he was in grade one, I asked him if anyone asks him about his hands flapping, and he matter of factly said, “yup. I just told him that’s what I do”:) He has moved into more finger flicking. I see him trying to hold his hands too. It’s encouraging to us because we know he is aware of his movements. He was assessed last year by an occupational therapist. I have a hard time believing he falls under the Asperger spectrum because of his social capabilities, but I feel it’s time to get further assessments. Hope this information helps others.
My son is 14 and a freshman in highn school. He has been flapping his entire life. He is not ADD/ADHD or autistic or anything else other than a very bright typical 14 year old boy. He flaps outside at home where he thinks no one can see him now. I have never said anything to him because I thought (and continue to believe) that he does it to calm himself and that it is just a habit that he learned when he was really young that helps him cope. I have worried on and off about it – but he is so well adjusted and happy that I haven’t said or done anything about it. I loved the comment from the 20 year old girl. Sounds like he is perfectly fine – but I still wonder if there is something I should worry about. If anyone has advice, please comment!!
Rebecca’s description of her daughter sounded as if she were talking about my daughter Emma. I cannot believe the similarities! Virtually everything she mentioned applies to us (Emma LOVES Harry Potter and was Luna Lovegood for Halloween this year). Emma is 8 years old and attends a Charter School in our town.
I was working with her tonight on her reading (she has difficulty) and all of a sudden, she changed the subject and said “Mom, I don’t want to be the hand-flapping freak anymore”. I just didn’t know what to say & it took every ounce of strength in my body to not start crying after hearing these words.
She flapped as a baby and everyone thought it was the cutest thing ever. She was the most amazing baby. Never cried, went everywhere with us and never, ever misbehaved. I cannot tell you how many times we were complimented by strangers about how good she was. People just could not believe what an amazing child she was. We couldn’t believe how amazing she was! Her smile dazzled everyone & the flapping brought nothing but positive attention; that is until she was 3 and began pre-school.
My husband and I were completely caught off-guard at our very first parent-teacher conference to hear that the teacher’s recommendation was to have Emma tested for Autism. She did not exhibit any other symptoms aside from hand-flapping but we wanted to be sure so we took her in to be evaluated. Much to our relief, the neurologist we saw stated in no uncertain terms “There is nothing wrong with your child.” We reported back our happy news to her teachers only to be asked about further testing recommendations. “What about seizures, what about ADD, what about Aspergers…” After going back to our doctor several times, finally, we had enough and pulled her from the school.
When she was about 5, the hand-flapping became more pronounced and accompanied by opening her mouth very wide. She doesn’t always do both together but when she does, it really makes her stand out in a negative way. She does have difficulty staying on task in class and she is a visual learner so her teacher is using adaptive strategies to help keep her focused. We are extremely fortunate to have the support of a wonderful school staff willing to do whatever it takes to help Emma succeed despite not having an official diagnosis of any particular problem.
Emma is very social, extremely imaginative, loves her friends, plays softball, is in a Brownie Troop, loves movies, music & art, has an amazing sense of humor and loves to make people laugh. She is the kind of person that lights up a room with her smile. She is kind, generous and extremely sensitive to how others are feeling. She is also very sensitive to how others feel about her & this is the problem.
Last week she mentioned that a girl in her class called her “weird” and wouldn’t let her play with her. This week she said that a boy asked her “why do you do that?” referring to her flapping. It’s clear that we’re crossing into a situation where Emma doesn’t have thick enough skin to withstand the comments she receives when she flaps and I have to admit that I feel a bit guilty not talking to her about it or preparing her for the cruelty of kids. We always took the approach of this is Emma’s happiness expression. To her, it was a positive thing (Happy Hands Emma much like Happy Feet the Penguin). Also, it doesn’t help that she is the tallest 2nd grader at her school & gets mistaken for 10 or 12 years old all the time. She REALLY stands out!
I have many hours on many occasions trying to find some help on how to help Emma stop or more realistically, control her flapping only to feel like that would be the wrong thing to do. Now, more than ever, I feel helpless. I hate correcting her by calling her name to snap her out of the episode, but I hate even more watching people stare at her and worse, make comments to her.
Most people say “oh, she’ll grow out of it”, “don’t worry about it”, “it’s hardly noticeable”. Now I’m thinking “what if she doesn’t” “should I worry” “it is noticeable”.
Has anyone worked with a Occupational Therapist to help their child stop flapping & if so have you had good results? Are there any proven resources for positive and practical at-home techniques we should try? Any help or advice would greatly be appreciated. It is clearly affecting her in a negative way. Thanks!
I have a son who is a freshman in high school — almost 15 years old. He has hand-flapped his whole life. I never honestly knew that this was a symptom of anything until quite recently. My son has had the hand-flapping under control for quite some time, and never does it outside of our home. We have never talked to him about it, although he does seem to have a need to do it regularly, in the privacy of our home. He has no other symptoms of autism. He is extremely bright — he has always been one of the smartest boys in any of his schools. He is social and definitely makes eye-contact. I would not describe him as overly social, but nothing appears abnormal to me at all. He is an incredible person, and we receive nothing but good comments about him from teacher and parents. So, it seems that this symptom can appear without any others. I have been curious about it, but have chosen not to worry about it.
I am so relieved at reading some of the descriptions here. My 9-year-old daughter has been a hand flapper since she was a baby, and also does finger flicks and bends over forwards almost double when she does this. Sometimes she also paces up and down the room, while flapping. It happens when she is excited or anxious. She is totally aware of it and knows it is not socially acceptable, yet she says she needs to do it, so who cares? She is not teased at school, although sometimes there are comments from other kids, but she doesn’t take it to heart and is well accepted. Her verbal skills are extraordinary and she maintains very good eye contact, as well as having a great sense of humour. She has some symptoms of add and is easily distracted. The thing is, she is so “normal” in so many ways that I don’t see the need for intervention at this point, and neither does her paediatrician. She is very sensitive to other people’s feelings, is beautiful and sweet in every way and I adore her! Good luck to everybody with wonderful kids like my daughter!
I’m a ninth grader, and I’ve recently noticed I flap my hands. It hasn’t ever been a problem, at least from what I can remember, nobody has noticed (I have the worst memory). It only happens when I’m really excited or happy, and I can sort of control it when I’m around other people.
I also have some other mild autistic symptoms, but nobody has noticed, is it worth looking into?
For me it is to release ‘excess energy’ that is constantly stored up due to all that stimulation from the outside world. I usually do it in time to music so is appears more acceptable, but it is something I have to do or I will explode. Even if I dont flap hands I have to make some sort of movement, like a safety valve.
My daughter is almost five and we have always thought the flapping was very cute. Now I worry a little about it especially after reading these postings because I always assumed it would go away. She does it when she is very excited and she also kicks her feet rapidly at the same time. The feet kicking was probably the thing we paid more attention to at first something none of the other postings have mentioned. She is also very intelligent and already starting to learn to read. She knew her alphabet at 20 mths and has always been very verbal. Now I’m a little worried about it, but I really don’t think I will discourage it in anyway because from what I’ve read here, it really won’t help. My wife teaches autistic children and definitely doesn’t think there is any connection in my daughter’s case.
There are so many common stories, but no real solutions or at least suggestions to cope with our kids situations. It’s terribly frustrating isn’t it? My daughter is almost 3 and has similar flapping and mouth opening in response to things that excite her, since she was 1 and a half…
Any answers vs. questions??
I am nineteen years old, and when excited or in tense situations I have a tendency to flap my hands and have a strange habit of walking on my tip toes. However, I have learned to curb the habit by only doing this in a private area. I never was tested for Aspergers, but nobody has ever suspected it because I can control it.
I am an honors student in many AP classes, and I just wanted to reply to all concerned parents that children that have this can become successful individuals. Learning to curb hand flapping when excited is good, and if someone with this can learn to keep it private, nobody will suspect anything wrong with the person. I do not know if I have aspergers, and at this point of my life I do not want to find out. I have just learned to deal with my habits. As an engineering student, Model congress participant, and my acceptance to Ramapo college this fall shows that children with this can be great gifted individuals.
Thank you for posting. It’s refreshing to learn things from your perspective and experience. It really, really is…thank you so much.
My son just turned 8. And since he was a toddler started figitting when tense situations. Recently, he’s flapping when he’s excited. I’ve asked him what he feels when he is flapping his hands and his reply has been that he likes to.
His 2nd grade teacher has noticed his ‘anxiety’ and is recommending that he be diagnosed by his doctor.
This is my first time reading up on the ‘flapping or stim’. In fact, I didn’t know that there was a name to what my son did.
My son does have a medical condition–kidney problems. And has been taking medication for sometime. I just wonder if it has to do with that as well.
Please keep posting…and congrats on your acceptance to college.
Thank you all for sharing your stories! I check back here regularly (I posted above almost a year ago), and hearing from everyone – especially Caitlin – confirms what I feel to be true. My son can communicate abut his flapping now and expresses a need to do it.
I’m trying to help him find another way to deal with his energy as he enters kindergarten in the fall, but I am not shaming him into any suppression of his behavior.
I did see some interesting videos (youtube) on Super Brain Yoga, and we try that, but its hard to say if it helps. I’m doing it as much to help my feeble brain (ha ha) as to see if it helps my son.
If anyone has any more tips, I welcome them.
We have a 3 year old son who has been flapping his arms and kicking his legs since he was a baby. We would comment that he looked like a little ‘cricket’.
The arm flapping and now leg stomping… ( he was also a late walker… didnt walk until 2) has increased lately. As with the other blogs when he is excited ie watching a toy fall/ bark hitting a fence/or driving in the car when hes in his safety seat he will display these ‘stims’. When hes really into it, he will also sometimes open his mouth a little.
We are confused as to what the best approach is for him as we do not want to make him feel ashamed of something he seems to need to do.
IT was great to read some of these other blogs.. esp from some of you who have flapped yourselves.
We have read about a weighted belt/vest which makes sense to ‘ground/calm’ effect. Has anyone used these items and if so what effect did it have on the flapping.
We also like the idea of being able to discuss this with him when hes a bit older and agree to a more ‘socially approapriate’ strategy… would appreciate any comments.
My daughter who is 2 years 8 months old has been doing hand flapping with mouth open since she was one. I went & saw a neurologist couple of months ago. He said she just has the “Sterotypic movements” & will outgrow these. My daughter is otherwise very intelligent, knows her numbers till 100 & alphabets & even spellings of 3 to 5 letter words. My daughter only speaks words & no sentences. Though sometimes she tries to sing her nursery rhymes. As my native language is different from english she is trying to learn 2 languages at same time. We think probably thats causing the delay in speaking. Once I read all these stories I realise the seriousness of this. I feel bad for my daughter because she may have to live with it for the rest of her life. I even put her into a play school from last week hoping that will help her. She makes eye contact but doesnt like to play with other kids. If anyone has any suggestions on what else I could try to help her come out of this then pls share your opinion.
Navi-
Your daughter sounds exactly like my son when he was her age. He is now 4.5 yrs old. When he was just short of 3 we took him to a private very well respected Neurological peditrician (we didn’t want to wait the 18 months). He was diagnosed with ‘mild autism/ppd-nos. The Dr. said with the right intervention he will be like a typical boy with maybe a small quirk (he flaps occasionallly). He was dead on – our son has changed so much- his language is now at a level beyond his age,he now plays with kids, very social, eye contact is so much better- so many things…the key is to get your daughter evaluated (by a well respected Neurological Ped) asap-if there is a diagnosis you’ll qualify for services…….early intervention is critical. Nothing to lose and everything to gain.
I mean a “Neurodevelopmental pediatrician” (not Neurological….)
Sue,
We had our son evaluated by a developmental pediatrician (also did the private pay to get in sooner) and he suggested three things: OT therapy for sensory issues – we did this for several months but unfortunately found no real help. Our son in doing so well socially and academically (he is five) our only concern is the handflapping (and opening of the mouth). His other suggestions were aquatic therapy or equine therapy. Both services will be out of pocket as well as an hour away. Therefore we are trying to decide which he could benefit from most. Was wondering what your experiences with therapy were.
Thank you.
Jennifer J.-
Not sure if you’ll get this reply-didn’t know how to do it through here, but if you do get it shoot me an e-mail at: susancapizzi@comcast.net & I’ll talk to you via e-mail. Will be easier.
Sue
Hi. My son is 8. His teacher has noticed bouts of hand flapping. She has noticed when this happens is during ‘transitions’ and has suggested that he be diagnosed to determine the reason behind what she referrs to as his ‘anxiety.’
From an early age, my son would hold his little hands together and figit. He ONLY did this when he was ‘caught’ being naughty and was getting a talking to. I have taken him to a couple of ‘specialized’ doctors (alternative) and two doctors have said that my son, at the age of 2.5, had somthing really bad happen to him–like a trauma of sorts?
I recall two situations when my son was about 2ish where my son was terrorized… The 1st is when he turned on a vacum cleaner and the noise TOTALLY scared him horribly and the 2nd time was during meal time.
He has been flapping his hands for several months now. We notice he does this when he’s in situations that are really fun and new–when he’s excited. I’ve also noticed that he hums when he does this as well. He sometimes does it at home, but not too often, when he’s at home he’s calm and mellow.
My son has a medical condition (kidney/immune) that it currently being controlled with Prograf. He has also had problems with anemia.
I don’t really know where to go from here… I would be interested to learn if the medical conditions/medication have resulted in my son’s current hand flapping.
If it’s a deficiency in vitamins/minerals.
If it’s genetic.
Any help, please let me know.
Dear Parents
My 3 year old has the same hang flopping problem. Does anybody know the reasons why kids do this. Is this a neurological problem. Is this a genetic problem. Do we need to see a doctor for this.
Could be a sign of something…..need more info – if concerned about other things that your child is doing that is not ‘typical’- or not reaching certain milestones I would have him evaluated.
I have a 12 month old daughter who has been flapping her hands since she was about 6 months old. Now she seems to flap them more and kicks her legs as well and sometimes bounces. I have noticed that she is doing it when she is excited, anxious and tired. She is developing well with her crawling and now starting to walk, but she isn’t waving or pointing. She isn’t saying any words as yet, but she is babbling alittle. I have recently discovered that she has never wanted me or anyone to cuddle her, she has always resisted it. She is a very happy baby with the most gorgeous smiles and giggles. I also think she likes to play on her own because when anyone attempts to play with her, she seems to always go off on her own. She likes people giving her attention, so I think she is quiet socialable. She doesn’t seem to hold close eye contact for long.
I am having her evaluated by a ped doc to see if there is anything wrong with her dvelopement. My GP has advised me of possible Autism and he has advised not to do her 12 month triple vac.
If anyone has any advise, thoughts or feedback, please let me know. I am extremely worried and distressed for my daughter. I love her with every piece of me and I would do anything to keep her happy and nurtured.
Thank you from the bottom of my heart.
I read your post, and are very proud that you are so sensitive to your daughter’s needs. Does she turn her head to look when you call her name? It has been my findings that you should follow your motherly intuition. I suspected that my son had a problem when he was two weeks old (before any physician), followed up on my hunch, and it turned out that my son had to undergo a liver transplant when he was 5 months old. When my son was two, I asked his pediatrician why my son wasn’t talking as well as his peers. He assured my that so long as what my son was saying was appropriate for the situation, not to worry. I took his advise, and my son was diagnosed at 3year 8months as having autism. Look at all of the wasted time MY SON COULD HAVE BEEN IN INTENSIVE THERAPY. My point is that you know your child better than anyone, and if you think that there is a problem, don’t wait. These developmental years pass by too quickly, you do not want that window of developmental opportunity to close. Best Wishes for a positive outcome.
Pam
Hi. What do you mean by developmental opportunity?
I forgot to say too that her hands are so sensitive, she pulls her hands away when anyone touches them. She seems very anxious and uneasy when anyone touches or play’s with her hands.
again thank you from the bottom of my heart.
Julina
It’s really comforting to read all this. I’m 23, and all my life I’ve been doing this finger-twisting motion that’s similar to flapping. I only get the urge to do it when I’m excited or stressed, and I only do it in private. When I was 9, my mom took me aside and told me to try to do the finger-twisting thing under the table or in my pockets. Gradually, I was able to get it under control, until I stopped doing it in public altogether.
I’m from a small town, so I was kind of stigmatized. I’d recommend that any parents do what my mom did: try to be understanding and give the kids an outlet for this behavior when they’re in public. The earlier the better, too, ’cause it sucks going through elementary school with no friends because you’re the weird girl.
I used to have a lot of shame about this, and refused to talk about it with anyone, even my sister. But gradually, I’ve been able to kind of distance myself from the guilt. Part of it was getting the hell out of that town — I went to a top-20 college and now live in Atlanta — and part of it was opening up to my boyfriend about it, this huge secret I’d been keeping since I went to college. His reaction was awesome: “That’s your big secret? That actually sounds kind of adorable.”
Hello,
I am interested in this thread as I belong to a family of flappers. My great grandmother flapped, my father flaps and my brother flaps. All of my family are highly intelligent, very loving, even successful people. However, I am concerned about the flapping.
I am a 32 year old woman and I am currently considering pregnancy. I was also diagnosed with a seizure disorder last year. I am personally concerned about where this is going genetically, especially if it is fragile x.
No one in my family has ever been seen by a Dr. for flapping. It is a very private affair and those effected are very protective of their “creative gift.” My father and brother have had to find ways to privatize their flapping so much so that the rest of us find it very uncomfortable to talk about it with them. They get somewhat defensive. I bet you can imagine how dififcult it is to discuss such a intimate/hard to understand thing with headstrong, successful, independent men can be.
My father, an accomplished engineer, flaps several times a day (in his own subdued way) especially over sports and news but almost over any exciting point in a conversation. When alone, he all out flaps, hops and dances, especially in front of the TV. He is over sixty years old.
My brother, who is in his late twenties and is an accomplished artist, also has a subdued flap. He flaps frequently, about every half hour or so. His hands ball and his whole face changes for a few moments. Most people wouldn’t be bothered as it is so much a part of who he is. When he was a child, his hands flapped up and down at the wrist – like bee wings. Photos of him at his birthdays as a boy show soft blurs around his hands. His Judo teacher nicknamed him “Tornado.”
They both say that this is a special gift, an amazing world they can fall into, a land of magical splendor. They feel bad for the rest of us who can’t “go there.” At this point I like to remind them that they are also OCD, and I don’t need to “go there” with them (although I also possess some of these same obsessive characteristics). If you can’t tell already, I love both of them like mad.
Now here I am. I carry this gene. I know it isn’t the end of the world to spread it again, but I REALLY want to know more about this.
When my mother married my father she didn’t know about this “gift.” The first time she saw him “flap” and dance around, she hid under the table. Now they’ve been married over 38 years. I want to be married for 38 years. I want my children to be healthy. What should I do?
What should you do, or could do? Nothing!
Why worry about something you cannot control
My son is 24 and has hand flapped his whole life. I never though anything of it . we just had a discussion where he said he still does it when he gets excited. Is he normal? Yes, of course. He just finished his degree in Philosophy, he is intelligent, smart, beautiful, creative , witty and did I say Handsome. What is there to worry about? Nothing.
There could be worse things in the world you know.
My 5 year old son has been flapping his hands since he has been 2. He only does this when he is excited about something. When he plays when his toys her will start flapping as the cars or trains move on their own, or when he sees a friend riding a bike past him.
He has no other signs of anything, he is the most sweetest and loving child I have ever seen.
I bothers me to see him flap his hands only because I am afraid that if he does this in school, he will get labeled as something that he’s not. His Dr. said there is nothing wrong with him.
Not sure how I should handle this.
my 27 month old son is a sweet, loving, intelligent little boy. he interacts well with other children and shows great imagination in play! he speaks very well (although rather a lot!!) and can already count to 30, recognize all his numbers out of sequence and even do some basic maths. i have been concerned about his hand flapping for nearly a year but he is so normal in every other way i didnt worry. now his day nursery has told me they are concerned about his behaviour and think i should have him evaluated. im worried sick!! what could it be? they say they are concerned about the hand flapping, (which he only does when hes excited) his ability with numbers and words and they have also said he runs on his toes and is very clumsy! they did say its probably nothing to worry about and that hes delightful at nursery but as his mum, i cant stop panicking. does hand flapping have to mean autism?? please help!!
You should have him evaluated ASAP by a well respected Neurodevelopmental pediatrician. Look up the term “Asperger syndrome”. Hand flapping in & of itself doesn’t mean he has autism. Stay strong, be positive & be his advocate- get him evaluated.
Hi,
I have a 23 month old son that’s very sweet & loves attention! Although I’m extremely concerned about his abilities & behavior. He doesn’t talk ANY, not even 1 word. He doesn’t even babble. He doesn’t always respond to his name (I don’t think he really knows it because ever since he was born we’ve been calling him by different things like terms of dearment words such as “baby” or “sweetie”)…so that might not be his fault. Though we have been calling him by his actual name for months now & no luck. He hand flaps CONSTANTLY all day every day. He jumps and bounces as if he were Tigger from Winnie the Pooh. He doesn’t respond well to directions like “Put that down”, “Come sit with me”, or “Stop turning the TV off”.
The positive things he does are:
When he wants to go outside, he will bring me his shoes, sit in my lap, stick out each foot for me to put them on and lead me to the door.
When he wants food or a snack, he will grab the crackers (or whatever else he wants at the time) and bring them to me for me to give him one.
When he wants me to read him his favorite book, he will go get the book, sit beside me and open the book up and actual LISTEN to what I’m saying…he’ll look up at me and pay attention.
He loves playing hide and seek with me. He’ll run and hide behind the chair and laugh and giggle.
When he wants me to pick him up, he will grab my hands and try to pull me up and then when I stand up, he will put his arms in the air.
He actually knows what he wants and doesn’t want. I use the “Pick & Choose” method. Like, “Do you want your ball or do you want your truck?”
I’m just concerned because he has a speech therapist & an occupational therapist and the OT said she thought he was autistic. Is anyone going through the EXACT situation I am as for as not talking at all and things like that?
Thanks!
Hi leslie-
My sons wasn’t exactly like yours, he was babbling & reached all his milestones up to about 18 months. But I know other boys who sound just like your son. We had our son evaluated by a well respected neurodevelopmental ped when he was 32 months-he was diagnosed with mild autism/PPD-NOS. He qualified for more services (was getting speech & OT) & is now an amazing 4.5 yr old because of the intervention.
(Leslie)
I would like to comment on your personal situation that you posted. My son is now 5 years old and boy does our situation sound very familiar. My son has been diagnosed with Autism, since age of 2. He does flap his hands, and has very limited speech. He does as your son and brings me things that he wants, and for the most part is very independent.
Warning: Doctors may not see anything wrong, they may send you home empty handed, but do your research, get second opinions and never settle for less. Remember you are your childs mother and you know him best, and I know from personal experience, each day you will learn something new about him to help him learn and grow better than doctors if you look and pay very close attention as to what motivates him. For instance, my son loves to flap his hands any chance that he can get! but what triggers it is spinning toys, music and lights. So to encourage him to speak or atleast try, I motivate him by giving him a words to mimic and encourage him to give it a good try. When he does a ‘norm’ situation would be a pop sickle but his is a spinning toy with a lot of lights. His special toy, that he only gets to play with when we are learning.
Something to look into : It has now been determined that what COULD cause my sons hand flapping is florescent lighting. Some can see rays of light bouncing(reflecting) off of objects causing the hands to be motion of excitement and a period of trance.
In closing I thank Aspiring Dad for allowing people with one thing in common to come together and learn.
Hello!
After reading many of the posts, it is comforting to know I am not alone in my concerns about hand flapping. My son is almost seven and has been flapping his hands probably since he was two. He does it when he is observing something that excites him, like a completed task, toys arranged, something in motion. He often opens his mouth while flapping his hands.
MANY times I have asked the pediatrician if we should be concerned. He finally gave us a referral to a neurologist who said he saw no other problematic signs, like Autism, and told us he would “grow out of it.” That was several years ago.
As he is about to enter first grade, I am worried about other kids teasing him and ostracizing him. I think it will damage his ego and change him socially. He already says he doesn’t like school and doesn’t want to go, although he won’t tell me any specific reasons for feeling that way.
At this point, I am considering video taping him while he is in these trances and taking it to the pediatrician for an explanation as to why I should just let this go. Any thoughts?
I’m a 24-year-old guy with a life-long history of hand flapping. Well, I started out by interlocking my fingers together very tightly (sometimes gripping an object such as pencil) and “shaking” them. This has gradually evolved into full-blown hand flapping to the point where my wrists may be at risk from developing repetetive strain injury! I now also hold my breath and even hyperventilate when doing so. I do this when I am excited, not when anxious. Sometimes the feeling is just euphoric..
Like some of the above posters, I never fulfilled many other autistic spectrum disorder criteria. In fact, I was regarded as a highly precocious child and was referred to one of the countries top speech therapists who was apparently astounded at the rate I was reaching linguistic developmental milestones.
I also have an outrageously vivid imagination that has thankfully never left me. I have a ‘diagnosis’ of ADD as well as giftedness (the 2 are often co-morbid or misdiagnosed as each other). My giftedness predominantly manifests in music and language. I am also highly emotional, but have been accused of lacking empathy.
I also have a fascination with my reflection and am prone to prolonged episodes of mirror gazing. I always assumed this was pure vanity, but I have been advised of the ‘bizarre’ nature of the expressions I apparently pull when doing so. Reading some of the above posts, I am really intruiged as to how this resonates with your experiences.
Anyway, at 14 I was expelled from school after 10 years of absolute hell. Despite my intellectual precocity, I spent the vast majority of my school life in detention, isolation etc. I was the archetypal class clown, bully and bad boy. When I was expelled I was evulated for autism, but the expert rejected the possibility.
So now I’m wondering what exactly I ‘have’? I’ve heard that hand flapping when excited can be an indicator of giftedness – some kind of release for excess energy within the nervous system, or something like that.
However, it may be that I have Aspergers, I can’t be sure. I would love to hear more from all of you!
Adam- you should read the book “Look me in the eye” by John Elder Robison – its non-fiction, very interesting & you may see some parallels to your life. Let me know what you think after you read it.
Quick question for everyone on this thread – has anyone played with diet and noticed any differences?
I sometimes get the feeling that dairy products make my son flap more. Whenever we are on vacation & change our typical diet, I notice that my son does more hand flapping. It could also be the stress/excitement of travel, but I have tried to pay more attention to his diet and it seems to have an effect.
BTW, we were at a fountain and there was a boy hand-flapping right next to my son (who was doing the same). I spoke to the dad, and they were from Germany. His pediatrician said that the boy would probably grow out of it – same answer that we seem to be getting in the US.
I recently went on a dairy free diet for just over a week and noticed no change whatsoever..
My grandson is 4 and half and has been flapping his hands since he was about 8 months. He does it when he is excited (mostly playing with his toys and singing) and I can tell he does it more when tired. The doctor has told my daughter that he will probably out grow it, but from what I’m reading, I can see that’s what many doctors are telling parents Has anyone known of a case where a child has outgrown flapping? He is a very loving and bright child in every other way. It breaks my heart that there isn’t something that can be done, before he starts school.
Is there anything that anyone has found to help the problem after seeing a Neurodevelopmental pediatrician? I’m just looking for any answers, as I’m sure the rest of you are.
My daughter doesn’t like to discuss his flapping and I don’t know how to ask about it without upsetting her. Any suggestions?
I don’t have any real answers as I’m still seeking myself.. but I did receive some solace in being diagnosed with ‘giftedness’. Upon diagnosing me the specialist said “And I bet you flap your hands a lot too!”. Apparently its down to increased psychomotor activity in the brain or something. But of course it can be indicative of autistic spectrum disorders and a myriad of other neurological impairments.
Good Evening!!!
My daughter is 5 and has been flapping her hands since about 2 yrs old. My family and I never really put any thought into her flapping because we knew she was just excited or happy! She also will sometimes open her mouth really wide, but not often. She started Kindergarten this past week and already the teacher pulled me aside and told me that she was concerned about it and that my daughter did not want to participate in any activities or make any friends or she didnt listen to her(the teacher). I did decide to go and watch her one afternoon as she was outside for recess and noticed that within a 30 min span she flapped 22 times and was just pacing back and forth in the playground and did not speak to anyone. Usually if she is farmiliar with the person she will laugh with them, speak with them and play, but for whatever reason she is having problems making friends at school. As a mother I thought about it being Autism and actually researched the topic and noticed that she didnt really fit 100% of what they were describing. Does anyone have any tips that I can use to help her break out of her shell? She does have high self esteem and is a very smart child, but she is having problems socially. I want her to be academically succesful as well as socially. I just dont want to see her getting older and suffer academically and socially from her hand flapping and inability of talking to other kids….I must say that it is comforting to know that my little girl is not alone in the world that does this. For those that flap and can somewhat control it, what tricks do you use? I dont want to keep telling her not to do it, because it seems not to really work…she will still do it a few mins later after telling her to stop. Any help is greatly appreciated!!
Wow, I just want to thank all of you who have responded to this thread. It has been so comforting to read about other children like my son.
He is 2.7 and has been flapping his hands since he was about 21 months. He is a very verbal, social and loving child with an incredible imagination. He already has an imaginary friend, and he creates and says the most amazing things. We’ve also been to specialists who say he is not on the spectrum, as he doesn’t have any other symptoms or delays.
He flaps when he’s excited, when he’s imagining, observing, or after he’s accomplished something. He flaps from the elbow, but sometimes does stuff with his fingers.
As for diet, we have found dairy directly impacts his flapping, although it doesn’t stop it completely. I’m convinced there is something else in his diet that makes some days worse than others. I’ve just begun a food diary to try and figure it out. So far we’re beginning to suspect soy and strawberries.
He’s beginning preschool next week and I’m also worried about him getting teased. I’m a sp. ed. teacher and I know the behavior is going to raise red flags and that makes me sad.
It is frustrating that we’ve all found each other, but don’t have answers. Maybe we should start a message board or group to discuss further??? I’m very interested in talking more with those of you who exhibit these sumptoms with no underlying condition, or talking with those who have children like mine.
My son has been flapping since he was a baby, and is now in first grade. He was never teased in preschool by classmates and even now in first grade he says that no one mentions it to him. In K his teacher was concerned about the behavior, but he functions normally for the most part. It is painful when grown ups think he’s different, but I think other kids are more accepting than we give them credit for (although sometimes they’re not). Try not to worry too much. My disdain for my son’s flapping seemed to strain our relationship, so in recent months I have come to the conclusion that it is more painful for a child to hear “don’t flap” from a parent, than to be teased by others.
Thanks Linda, that was a very grounding post for me.
Shauna
Oh I meant to also say, like a previous poster, my son’s flapping gets markedly worse when he’s fighting a cold, even a minor one. He’s only had 2 minor colds since the flapping started- I’m scared about what might happen if he really gets sick.
Im 16 years old and have always flapped. I don’t have any form of autism. I don’t think you you should worry very much about the flapping, and you certainly try to set specific times when she can or can’t do it. The only time I flap is when I’m alone, and when I’m in public even if I feel the urge to, it’s easy to hold it back. As she gets older and becomes more aware of the kind of behaviors that are acceptable in public, I think she’ll do the same
Patrick–thank you so much for posting. I appreciate soo much hearing this from an individual your age. My son is 8 and I am concerned for him and his future. I have a lot to learn about what he is going through and where to turn to for answers Hearing from real people like yourself helps tremendously… thank you.
Patrick – Thank you so much for posting this…I think I just took a much needed deep breath. I am hoping that my 4 year old grandson will be able to control his flapping. He has no other symptoms of autism and the doctors keep saying he will probably outgrow it. I’m sure many will be encouraged to hear someone your age talk about how you have been able to manage your flapping.
May I ask when your parents talked to you (age) about times when you could or could not do it, and do you think that helped? I would love to hear anything else you feel might bring some insight to flapping.
Just wanted to let you all know my son was just diagnosed with Stereotypic Movement Disorder. He doesn’t have any delays, but does flap a LOT!! The neurodevelopment doctor we saw said it hasn’t really been studied much so they don’t know a lot about it, but that children tend to outgrow it, or they get better at hiding it (like Patrick said). He said it’s important we do NOT draw attention to it, or to try and stop him from doing, and to just let him be.
Dr. Roger Freeman has been working with/studying the disorder for most of his career (is in Vancouver BC) and the doctor we saw today is forwarding on my son’s info, and videos. I think we may end up going to see him.
My son’s 8 and is flapping. Can you please post more of your experience and diagnosis. Thanks.
Wow, I am a special educator who works with young adults with disabilities, and I have to say that I am suprised and somewhat disheartened to read all these responses to hand-flapping. It seems that many of you are afraid of it and what other people might think of it.. In working with so many wonderful children and adolecents who are “on the spectrum,” I have become so used to hand-flapping, and could say that I have come to respect it as sort of a harmless and mysterious coping mechanism. I work in one of the most advanced states in the country for special education (people move here from all over the country for their children’s sake), and I do not believe that not one special ed. classroom in our state would ever teach a child with autism, etc, NOT to hand-flap. We have much more important things to teach these special individuals. That being said, I have noticed that my students use hand-flapping for various reasons, stress, excitement, etc. And that no two hand-flappers flap alike. If people think it is weird or crazy… well, they better get used to it. And so I do whole-heartedly exclaim, “Flap On!!!”
Hi, I must say I am always so happy to see new comments on my e-mail from this site you guys!!
I speak on behalf of everyone when I say HEY YOU SPECIAL-ED TEACHER…PLEASE TELL US MORE!!!!
My son’s first grade teacher just brought up her concern about my sons flapping. She wants to meet with me. We’ve been through this every year since prescool.
I know it’s distracting, but my son says kids never say anything to him about it, but it does seem to bother the teachers. I have had teachers count how many times a day he flaps and keep track of it. Why?
He does okay in school, he could probably do better but right now he just doesn’t seem that into it. He does get by with checks and plusses and the occassional x (A,B,andC’s).
Problem is he wants to follow his own agenda and hates being told a specific way to arrive at a goal when he knows his “different” way will arrive at the same result. I try to explain to him that that’s life. He uses flapping as a way of coping, he says he, “flaps out the craziness.” I used to try to convince him to control it, but I can’t do that anymore, he needs to do it.
Does anybody out there know how to deal with teachers on this matter? This is such a mysterious subject, and I am convinced that our flappers have found a way to deal with emotions that we wish we had. I sure wish I could go into another world like he does. But I understand that teachers want them present in the classroom, any suggestions out there?
thank you for putting this into perspective. My grandson of 5 has involuntary movements, flaps and shouts and was disagnosed as global developmental delay and hypotonia. He gets distressed if interrupted or disturbed in his routine of diffusing himself., My concern is for when he gets older and starts to notice the comments and stares from his peers and adults, He has just started school and the flapping has become much more violent and vocal. He has a sensory diet and squeezing and pressure help him relax. It is a huge worry for his longterm welfare, but he is a joy to have around. We have very little support, the medics discharged him and offered no further suggestions. .
Wow! Am i glad i found this…My 11 year old son has been flapping since he was about 2….he seems to do it when he gets excited…when he gets real excited, he also jumps and opens his mouth real wide and twists is tounge around….Ive tried to get him to stop many times in the past and told him kids would make fun of him if he didnt stop…he now has started middle school and ive been really worried because my son is extremely sensitive and im afraid of how it will go for him….i was honestly thinking my son was alone with this…i have thought in the past about searching the web but didnt until this past sunday..now im dissappointed i didnt check sooner…i googled flapping hands and by the time i got to ha in hands it was already suggested…i was shocked….i clicked this blog,then i started reading and i must say i was almost in tears…some of these stories are my son exactly……im glad to see there are other parents going through this, and even more glad to here from adults that have this…..since finding this and reading everyones responses, i appreciate who my son is and who he will become more than ever… i have told him i will no longer ask him to relax when he starts his flapping,and he can flap whenever he feels the need to…i will never ask him to stop again…we discussed his needing to control it better when he is not at home and it is something he will work on…i also think it would be great if some how we all could get together…it would be great for the kids and parents to see we are not alone…….i look foward to checking up on future posts in here….it is now in my favorite list……to the parents of and the flappers ho have posted here….thank you,thank you, thank you
I just received 3 studies done on stereotypic movements in non-autstic children from my son’s doctor. One of which is on how to treat hand flapping in non-autistic children. I would be happy to forward on to anybody who is interested. Please email me @ shaunajdiller@yahoo.com
I’m thinking I’m going to start a yahoo group for us, so we can stop hijacking Aspiring Dad’s blog. More later.
Okay done.
Looking forward to chatting with you all here. I have uploaded all three studies onto this site. You need to create a yahoo account to join.
http://health.groups.yahoo.com/group/stereotypicmovements
Darcrista,
Hand flapping in special needs children is looked upon very differently than it is in the normal child. Most of the parents who have responded to this blog (with fear in their hearts) are doing so because they are trying to search for answers and trying to help). Their children are not autistic, they’re not in special education classrooms, they have no delays and exhibit this odd behavior that others question, and they have no answer for. As a teacher myself, I knew my son’s preschool teacher would be calling shortly after school started (it took her less than a week). I feel blessed to have finally found one. I thank Aspiring Dad for allowing us to have this discussion here.
I would encourage all of you to read the studies that Shauna posted.
I had a correspondence with Dr. Singer, who said:
“We have recently started a variety of studies in affected children that are designed to better understand the underlying mechanism – include neuroimaging, electrophysiology, kinematic, genetic, and the use of animal models. Therapeutic trials are on the drawing board. To answer your question; to date, we have no evidence that diet has a significant role, but no one has carefully investigated.
I hope that your “not-so-small group” would be willing to participate in our research efforts.”
I never would have found the term “nonautistic motor stereotypy” with a web search, but apparently, that is the clinical term used.
My son and I now openly talk about his flapping in a nonjudgemental way. I know he is not embarrassed or anxious when we talk because he jokes openly as we discuss it. And he has told me that he would prefer not to do it – even at home in private – and has asked me to help him stop. What I usually do is engage him conversationally and give him a hug, or we tickle or wrestle. Then we do something together. According to his teachers, he hasn’t flapped at school.
I babbled on about my experiences with my son on Shauna’s website – I encourage you all to join. We can speak more directly in that forum (email each other personally).
I thought I’d just add in my little story – I stumbled upon your website and this struck quite a chord with me.
As far as I’m aware I’m don’t have Aspergers nor any variant A.S.D. As a small child I was often found concentrating on something (an image, a tree, whatever) and either flapping my hands or flexing my fingers repeatedly with my arms straight down at my sides. A couple of female relatives have been “caught” doing the same thing despite being decades different in age and having never met me. My family is now assuming it’s genetically connected.
I realized my parents could see me doing my repetitive moments when I was about 3 or 4. I panicked, became quite frightened that they would find it odd, and quickly altered my actions myself to something less noticeable. I started hand-rubbing. Even to this day I catch myself rubbing my hands together when concentrating on something, sometimes even in front of work colleagues (I’m 37). Hand rubbing seems to be taken as fairly “normal” by most people. How fortunate I was to stumble upon that option as a small child!
I encourage you to show yourself doing this to your daughter. She may choose to adopt it herself.
Thank you for sharing your world with us all. x
As in many of the previous accounts, my 4 year old son is extremely bright, ahead in all of his developmental milestones, is social, happy, loving etc.
He has been flapping, as one parent said above “since he discovered he had arms”. He only flaps when really excited, but hums and rubs his legs as part of his little “routine.”
Our pediatrician says he has no disorders – and said we should wait until the age of 4 before we do anything about it. He’ll be 4 in two weeks.
My husband tries hard to curb his flapping, by offering him alternate gestures, but I’m worried all this “correcting’ will affect his self-esteem. On the other hand, I too am truly desperate to help him before he hits school and is teased.
Has anyone else had a child that’s “grown out of it” (we’ve also been told this a lot – but I don’t believe it will happen).
I am struggling with how I should proceed…
Stephaine – I know how upsetting it can be to watch and wonder what is going to happen as your child gets older. My grandson has been flapping since he was about 8 months old. He is now turning 5 in March and still flaps when he plays. His little brother, who is 12 months is mimicking him (I think). At first, I was devasted and started researching everywhere for information. I made my daughter talk to the doctor who did not seem to share my feelings. I said something to my grandson one day about other ways to curb his flapping. He told me he was just happy and excited and couldn’t help it. I could see my talking about it made him anxious and sad. I swore from that day on I would never say another word to him about flapping.
He is very bright and loving. My daughter has learned to smile and and relax. He knows she knows that he is doing it and if he wants to talk about it he can, and that has helped him to relax. I’m sure as he gets older he will talk more about it but right now it doesn’t seem to matter. She doesn’t focus on it any longer and realizes what will be will be. I do feel as they get older they will find other ways of stimming that will be more socially accepted. I would not say anything to your son, I’m sure he realizes what he’s doing but can’t stop. You will know when and what’s the best way to approach the subject as he gets older. This may not be what some people would recommend but I feel if this is the worst thing that could happen to them, it’s really not that bad.
I don’t think doctors know how to treat this and if they did, it would be to drug them someway. I’ve talked to older children with this syndrome and they seem to be doing fine. Hang in there and let them flap.
Debbie,
I wanted to thank you so much for your response. I’ve read it many times since. One evening not too long after you posted, I was in the kitchen with my son and in a goofy moment I was listing all the things I loved about him and your post flashed through my mind. I casually slipped his flapping into the list. I wish you could have seen his face. He said, “you do?” and I replied that I loved everything that made him who he is and if flapping was part of who he is then I loved that too. I don’t know if there’s a connection, but since that day we’ve noticed he’s been flapping significantly less. Maybe our attempts at correcting were only making it worse? Obviously, it still worries me, and I’ll do everything I can to help him, but I’ve been able to let go of the panic I felt that his life would be hard, that he’d be teased– and be miserable. He’s such an amazingly bright, happy, funny and empathetic boy. I realized that day that life could have handed us far worse. If he faces teasing in the future then we’ll deal with it, but for now I just want him to enjoy being little – and free from the adult pressures of “being normal” that we often saddle our children with.
My daughter, who is now almost 6 has been handflapping since she was 10 months old. I’ve had her assessed three times and have gotten no support for any professionals. What I basically needed was some kind of support and ideas to help both of us deal with it in the correct way. When she flaps, it’s like she leaves her own body, her eyes dialate very large and she’s in a completely different zone. If you were to wave your hands in front of her eyes, she wouldn’t even notice. I often feel like it is digestive issue. Often when starts to flab, she’ll stop after burping loudly, or before she goes to the restroom.
She scored unbelievably well on an IQ test and is considered Gifted and Talented. She is in a Kindergarten class for “Gifted and Talented” children. I still have concerns though about her in social settings as she gets older. Her teacher has listened to my concerns and doing things inclass to help her focus. He has been of tremendous support and siad he would notify me if he feels the hand flapping is distracting her from learning. As her mother I can already that some areas will be harde for her to fcus on than others.
I am so glad that this website is available. It helps to connect and relate with other parents with similar concerns and reminds me that I am not crazy…that worrying about our children is normal…that we’re trying to address certain concerns now so that they won’t have to when they are older.
Her younger sister exhibits similar movements, except usually only when she is very excited or tired.
Hello everyone. I wrote this article 2 years ago and I’m glad that it has become a place where people can go to ask questions and share thoughts with others who are faced with the same situation.
Here is an update on my situation…
Our daughter has flapped since she was less than a year old and continues to do so at age 7. I am convinced that she needs to do it. This isn’t a simple undesirable behavior like nose picking or ineffective bum wiping, but rather necessary self-regulation. I don’t know why she does it but that’s just how it is. Stopping her from doing it did not seem like the right thing for us to do.
Every child is different and this may not be appropriate for your child and you are of course free to disagree with anything I say or do but we found ourselves taking the option of not doing anything about it. I am sure other people – probably at school – have commented on or questioned her about her flapping and not surprising, she has become a little self conscience about it. As a result, she has modified her own behavior to be more discrete about it. Instead of looking like she is about to take flight, she now flicks her hands under the table or desk out of sight. She doesn’t hum as loud when she does it or even at all when others are around. And because we never interfered or gave her any trouble about it, she feels completely free to flap all out at home and I’m happy that she can self-regulate in front of us without being ashamed or embarrassed.
It’s amazing how far she has come. I remember how she used to seem deaf and how it was impossible to keep her on topic and how she would walk on her tip toes. All of that is gone now. I am not advising anyone to take the hands off approach but it may help to remind yourself that children grow and develop and discover ways to cope and adjust on their own also. Of course it would be so much easier socially if we can get her “to appear more normal” but that may only make us feel better.
Hello,
I have a 3yr 7 month son diagnosed with severe autism, yet he has good eye contact, socialises with guests. He cannot speak our language (only makes sounds and rarely says ma ma , pa pa). He can make himself understood by non verbal communication. He doesn’t flap his arms but folds them and raises them many times a day. Is this hand flapping? It is encouraging to read about the experiences of people with these symptoms in this site. Thanks
Hello,
My son is 5 years old…he started the hand, arm, finger twirling movements when he was about 2 years old. He is bright/advanced, social, good eye contact and looks normal. Besides the movements, he displays anxiety and fear of loud noises and doesn’t like to enter theaters, flushing toilets, etc. We brought this up to a couple of pediatricians and they both dismissed it as something he’d grow out of, therefore he was never further examined.
Recently we noticed an increase in the movements and he started running and pacing as well. He is also having difficulties sitting and listening to stories during circle time and taking naps at school. The teacher says that he silly and appears a bit socially immature. We recorded him and took him to the pediatrician, this time he referred us to a Neurodevelopmental Pediatrician. He was diagnosed with Complex Stereotypies, Self Regulation, Auditory Sensory Integration and Central Nervous System Disorder, which I believe is all related to the Sensory Integration issue. We have been referred to an Occupational Therapist. At least our worries of Autism or ADHD were relieved.
I would like to know if these therapies are proven effective and whether or not they have worked or simply improved the stereotypies/hand flapping on anyone here.
Thanks!!!
I posted earlier about my 3 year old daughter. My daughter is 3 years 5 months old now. I have noticed her hand glapping has become very less once we removed gluten from her diet. May be some of you could try it for few weeks and see if it helps.
My son is 5 yrs old, in Kindergarten and has been handflapping since 2 1/2yrs. He has epilepsy and a “Sensory Processing Disorder” diagnosed by our Neurologist but our next step is waiting for the 3 day long evaluation from the pediatric Neuropsychologist to get the whole story. My friend from high school works with special needs children and recommended Gluten free/Casein free diet, it helped a lot intially with his hyperactiveness (he can be very hyper at times) and his speech (it was delayed also, and he had tubes in his ears after numerous ear infections at age 2). My friend also recommended a few books byJenny McCarthy: Louder Than Words and Healing And Preventing Autism, and Mother Warriors. I also found a fantastic book called Finding the Gray by Timothy Wahlberg, Ph.D. He has a website too. http://www.findingthegray.com. . Lately though his handflapping has increased. I was stumped why it changed as he is becoming further away from the gluten in his system. I now read that omega-3′s can help and possibly is could be caused from yeast and other toxins/foods. I am thinking of trying different organic vitamins as the ones he’s currently on are not labeled Gluten Free. Any advice from anyone out there??
Karen
I have to add my son to this as well. He is 3 1/2 and he started flapping when he was around 1 1/2. Yes, everyone thought how cute, but now at 3 1/2, the kids are starting to imitate him and it is beginning to bother him. He also opens his mouth when flapping and walks on his toes. He has been tested regionally and locally and has not been found to be on the autistic spectrum. He loves people and children and understands emotions. The kids love him, and he has friends, but the teachers in his preschool say he is a little disconnected and sometimes prefers to be alone. The psychologists think he has sensory disorders and I agree with this. So back to flapping, in OT therapy last year, I was told to persuade him to clap his hands instead of flap. I felt this was killing the joy, so I did not pursue this method. But now since peer pressure is beginning to build, I just told the teachers to ask him to clap his hands and we will do the same at home. Another little tidbit, my husband is dyslexic and all the men in his family are dyslexic. I am hoping my son does not, but am preparing myself just in case.
I have posted my situation before on here. It has been my experience that encouraging clapping works for my son, even though he forgets sometimes, Its a lot of work trying to teach that method because there has to be constant reminder otherwise it will not be as effective, and it will get worse.
I have never tried Gluten Diet because i heard that it takes a long time for the Gluten to be removed from the body, and if something sneak Gluten in there ingredients then it set you back on hoping for the “norm”.
All,
So happy to find this website. Breifly I will tell you about my daughter, who is now thirteen. She began repetitive movements very early – lots of kicking as an infant, need to climb everything as soon as she was able to, and rapidly moving her hands up and down as soon as she was able to hold a drawing implement. All of the tips of her colored markers were smashed and flattened. I don’t recall when she started flapping. It seems it was just an evolution of her need to move around alot.
She was a squiggly child and bright as could be. She was genuinely happy and curious about the world around her. She also had and has a wonderful sense of humor. When she began kindergarten her differences became more apparent. I noticed that she was more active than the other children (since diagnosed with ADHD, which I call attention different) and, although extremely bright, she had sensory issues which were sometimes a plus and sometimes a minus.
When I began to research what may be going on with her, I found that hand-flapping may be an indicator of fragile x syndrome. One of the site that I read said that some with the syndrome may have high verbal skills, good senses of humor, and hand-flapping may be an indicator. I was relieved to find a possible diagnosis. I brought her to a pediatric neurologist who said to me that he had seen thousands of children and many fragile x children and he doubted very much that that was my daughter’s problem. However, he went ahead and had that and many other tests done. My daughter’s tests came back and she was diagnosed as a fragile x premutation carrier. There is a lot of information (and misinformation) on the web about fragile x. Since it is a genetic condition that affects the x chromosome, there are different outcomes for males and females. There are also different outcomes for premutation carriers and those with the syndrome. One thing I have read over and over again is that girls with the premutation are not affected. It is not true. Just recently I think more of the research has caught up with the possible realities of what having the premutation syndrome may cause. The other thing that you will possibly read on the web is that the children will have average, or below average intelligence. This, of course, is not always true. The danger in incorrect information being put out there is that most educators who go to the web for information will be bombarded with incomplete knowledge and, if they know that your child has fragile x, they may or may not be wise enough to dig deep and realize that each individual child will have their own challenges, yet unlimited potential. Needless to say, I am so happy that my child flaps her hands. Without that key piece of information, I may never have found a true diagnosis.
Since my child was in first grade, we have referred to her flapping as “thinking”. It was the first time that I asked her what she was doing and she replied, “Thinking.” I never wanted to make her self conscious about her behavior so I tended to just let her flap on. When she was in fifth grade, she saw a video of herself in a school performance and came home from school and told me about it. She was upset because she saw herself flapping on the video. She asked me what it was and why she did it, and I explained to her that she generally did it when she was excited, or happy and when she had extra energy to expend. She said it looked wierd and that she didn’t want to do it in front of other people. We talked about other things she could do in place of it as a substitute. I told her that I knew many people that shake one foot while sitting and that holding your own hands could be a calming strategy. The point is, she wanted to make the change herself, and we were able to brainstorm some behaviors to help her stave off the urge to stim in public. She still loves to “think.” She comes home from school and runs around outside on a patio area that we have and “thinks” to her heart’s content. Sometimes she will share with me what she has been thinking about and generally she has extremely imaginative, creative, and inventive thoughts. I know that if she was forced to stop “thinking” she would be devastated. She has told me that she loves that time when she can just let her imagination be free. And while I don’t doubt that there are other needs that are being fulfilled by her flapping, I know that it is necessaary for her to flap in order to process certain types of information, just as it is for non-flappers to process in their own special way.
Since fragile x is a genetic condition and I feel my daughter has the right to keep her health information private, I have requested confidentiality when dealing with her school. Unfortunately, some people are more acutely aware of each individual’s right to privacy than others. For me, if I had it to do over, when requesting services for my daughter, I would merely point out that she is ADHD. Until there is more accurate information readily available to the general public about all the variables involved in fragile x syndrome, I think that children can be unfairly labeled with below average intelligence when that is not always the case.
I urge anyone that has a hand flapper in their family to have them tested for fragile x, if they have not already done so. Not only can a diagnosis of fragile x affect future generations; it may also currently be affecting past generations (parents, grandfathers, grandmothers.)
I know that it can be scary at times to think that your child may have a genetic condition that doesn’t equate with the supposed norm, but I can tell you from personal experience that knowing where my daughter’s challenges come from has given me more insight into ways to help her. I don’t always get it right. Each of us, I know, strives to be a good parent. Knowing what to look for when my daughter exhibits certain behaviors and having some ideas about what to expect in the future has made this parenting thing a little easier.
On a positive note, although my daughter is thirteen, she is still generally happy, curious, and bright as can be. She is also a teenager and exhibiting all the normal behavorial signs of being a teenager. That is a blessing and a challenge in itself.
I have never posted anything about my daughter before. I hope that in some small way this will help others who have questions about hand flapping find some answers.
Wow–my daughter “thinks” as well! We came up with that label for her when she was 2 or 3 because it seemed clear that that was the important feature to her. She also “thinks” now when she gets home from school, outside or inside….pacing around. She does not flap her hands but her grandfather, aunt, and younger brother do. But none of them does the pacing and “thinking” thing. Such a complex, private thing….. I can’t believe there are so many people with experiences that I can relate to completely! Thanks to everyone for sharing!
Theresa,
Thank you ever so much for your post. It was extremely insightful. I will request that my son who is 8 and has been flapping now for several months be tested.
Can you PLEASE, PLEASE tell me more about keeping his medical situation at school ‘private.’
Thank you ever so much…
I have my baby 2 and half years old diagnostic with PDD, now he is getting a lot of help, ABA OT speach teraphy, i want to know more about the hands flapping because that botters me alot. me because a feel that he is out of the world, i dont know why he does it, but this days i stop him saying that i want clap in set of flap, and he does it, he stim a lot but is went he is bored. he is having the Glutein and casein diet. it works for some issues so i thing everybody should try. and one thing that i did see was that when one day i gave him 2 boxes of juice, he really flap as crazy. thats why i thing the sugar is a real problem. so we cut the sugar a lot now the flaping is less but some days a lot. im trying to cut the sugar from al the surces. so let see what happend. thanks dont forget GF/CF diet help.
I am soo happy I have finally find some other parents that are in the same boat as me. My daughter has been doing her hands since birth and at first we thought it was cute and then realized that it was something else. I have been searching the internet for about two years trying find answers because all the doctors we have taken to to all say the same thing, “she will grow out of it”. As a parent I know all of us can’t settle with that answer. We have taken her to two neurologist and an OT and a handflapping therapist. All diagnosed her with sterotypical movement disorder. She is in not autistic in any means. She is very smart and loving child, you wouldn’t even know she does her hands. She has started her first yr of pre-k and doing great, the teacher has said that she has only done it once the whole year in class. She can control her hands and that is a blessing so I am hoping that she will grow out of it. However I am with a lot of this parents on here, what is causing it and how “we” as parents deal with it with no real answers or diagnoses. I think ignoring isn’t the answer but the real question is how do we deal with it and how to approach it with out hurting our kids. I know visiting with a therapist it really depends on how we approach our kids with it and the tone of voice we tell them to stop doing their hands. Which is harder to do than said, I am dealing with it on a daily bases. I hope we can come together and get answers and help our childern and help ourselves be okay with our childern and hands. Thanks for the Aspiring Dad for this post this is one more step to finding answers to my prayers and finally realizing my daughter isn’t the only one out there with this disorder.
Kacie,
I think it’s great that your daughter has been able to control her flapping in class. My grandson will start kindergarden this year and I worry about him being teased by fellow classmates. I feel teachers should be aware and watch out for teasing done by others. I stand by my conviction that I will never say anything to my grandson again about not flapping. I have learned through reading that it can’t be controlled. It would be like me telling you to never sneeze…you can’t control it. If and when he ever wants to talk about it, I will let him talk and l will listen. I never want him to think there is something wrong with him. I just let him be a kid and if he needs to flap, have had it. He is smart, sweet and unique. Flapping is part of him and right now he doesn’t have a problem with it, so I let it be. If it really starts to bother him, we will deal with it at that time. For now, I love his happy hands and I want him to be comfortable and secure enough to do it in front of me.
I hope we can all continue to find support for ourselves for this disorder. Good luck.
Thanks Debbie. I guess we all hand it differently but I know that it is harder to handle it emotionally as their parent than grandparent. I had read a previous post that your daughter doesn’t like talking about it and I can understand where she is coming from. I usually cry everytime I talk to my mom about it. It is just hard not knowing why your child does this and what causes it and no one having any answers. Sometimes I wonder if I should be the one that has the problem and should be in therapy or be on some kind of med. My mom has tried to help me understand and help my daughter but she also know that she isn’t with her 24/7 and understands that as her parent I feel guilty in some way of not getting her help or understand why she does her hands. It is very tuff to go to doctor after doctor and they just look at you as if you are stupid and you are making it up or no big deal. But this website has me have a new insight on how I think about it but I know now that my daughter isn’t the only one that does this. I really think that it wasn’t an accident coming uponed this website. I have searched and searched for answers and didn’t but anything different in the search engine and this one finally found me. I hope something does come about this and we can help each other get some answers and suggestions to help our kids.
Kacie
Hi Kacie, please don’t blame yourself for the hand-flapping thing. There might not be any answers but that doesn’t matter as long as it’s not a problem. I started hand-flapping when I was about four and I’m 18 now and still doing it, though because I was told when I was little that it was a private thing, I am now unable to do it in front of other people. I think the most important thing is to make sure your daughter knows that it’s private and there’s nothing wrong with that. It already sounds like she knows this, so there isn’t much else to do. She may not grow out of it, but it doesn’t matter. I’ve done it my whole life and it’s not an impairment. If anything it helps me to be more creative as a writer. However, keep an eye on the symptoms associated with hand-flapping, such as autistic-like behaviour and attention deficit. It looks scarier than it is, trust me!
My little guy was just diagnosed with autism spectrum disorder last month. The doctor sighted his hand flapping as a sign of autism. I beg to differ…my son has a great love for music, and can pick up a rhythmic beat very easily, and almost seems to feel the beat. He started this when he was a tiny baby. He hears the music and he spreads his little fingers, to create “jazz hands”, and moves them over head and to the sides as an artistic impression. He also loves the Wiggles, who do a lot of hand movements. He is especially affected by their Pop Goes The Wiggles musical DVD. I am interested in knowing how many of you parents have hand flapping kids who are musically inclined or love the Wiggles?
Pamela, I would agree and say that it would be totally wrong to diagnose autism on the basis of hand-flapping. I’m 18 and my hand-flapping developed when I was about four and I was also a musical child. Hated the Wiggles though! :-S However, as far as I know I’m not autistic and the hand-flapping seems to be linked to my ADD. It’s also closely linked to overactive creativity in my brain, so there’s little cause to link it with autism. I’m a grade 2 pianist and have a B in GCSE music. I’m also a writer. I’m fairly normal socially, though I’ve always been bullied for various stuff, and I’m completely normal academically. I’m not saying that your child isn’t autistic, but hand-flapping is no basis for a diagnosis.
Pamela,
My daughter is always singing something, she can keep beat really well and makes up songs from the top her head. I have noticed if I keep a music channel on that she doesn’t seem to do her hands as much because I think he keeps her mind going. I have also noticed when we are driving in the car she loves to listen to the radio and she doesn’t do her hands, so you might try leaving some music on and see if he does his hands less. But my husband’s side of the family is very musical so i think she just gets the talent from them.
Some of the reason may be deficiency in Zinc, somehow this is connected to the behavior. I have given Zinc tables for kids to my son. The tables are from Kirkman labs . The hand flapping has stopped. Also try the b12 therapy along with Vitamin C.
It does improve the behavior a lot, but always consult with a physician before starting any diet or vitamin therapy.
Thank you for posting this info. on vitamins & minerals. My son is 8 and flaps. He’s been flapping his hands for several months. Before that, he would figit his hands together…
A lot of posters here, but not many discussions about diet.
thank you.
I’m a twenty one year old female, not autistic. I hand flap whenever I get excited because its way more acceptable than jumping up and down and shrieking. I show horses and also do it every time I’m waiting ringside. I’ve been trying to quit because I know its a weird thing, but ya know what? No one even notices. :-) Its the only way to let the excited energy out!
I’m interested in Taylor’s comment because I am a forty year old female with a child with Down Syndrome, also on the spectrum. In recent years my life has been very stressful and I have noticed that I have started to hand-flap. I have no recollection of having done this before in my life. An autistic friend of mine tells me that now he has seen me do this he is convinced I too am autistic although I have good social skills, eye contact etc. How much of an indicator of ASD is hand-flapping and could anyone point me to evidence for the zinc deficiency link? Thanks
Hello, my daughter is 4 years old and has Aspergers. She is a avid hand flapper. I agree with the 3rd approach. When I notice her flapping I tell her “hugs!” and she hugs herself and then is done. Sometimes she hugs herself tight and sometimes not. But in public it’s a lot less noticeable with having her arms crossed than the flapping. Plus when she gets older she will look like every other teenager walking around with their arms crossed!! Small joke but true! I hope this helps.
As a parent to a 3yo with pdd-nos (mild autism), I wish I didn’t read so many times in these comments, “my child is bright, loving, definitely not autistic” or some variation on the theme. My son is also bright, loving, social, creative and likes to flap when excited, is a bit delayed in language, sometimes does not make eye contact, loves to sing and dance, etc. Every child is unique, possessing both gifts and challenges, and all (autistic and typical) are more similar than different.
My son is 9yrs old. As a baby he was completely normal with no adverse behaviours. When he was about 2 and a half I became concerned with the quality of his speech as he would babble. He had long conversations but was intelligable. When he started kindergarten a speech therapist became involved and by the time he started school at 5 year olds was easily understood. He still has what I would call ‘lazy speech’ and has to constantly be reminded to speak clearly.
During his earlier years he would also walk in circles and flap. When I asked what he was doing he would say “nothing” and walk away. The walking in circles has since stopped but he will spend a few seconds staring at the ground and flapping.
He now only flaps when he is walking or playing in the surf. He has good concentration, in fact teachers have comented how he stays on task and completes tasks. He is average academically although struggles with spelling. I put this down to poor speech pronounceation as he is a phonetic speller. He is very social and is well liked. He also showed from a young age very good hand eye co-ordination and is quite the athlete.
We have only just heard from his older siblings that kids at school ask why he does this. It doesn’t seem to bother him at the moment but I think he is becoming more aware as sometimes he holds his hands together to resist the urge.
I appreciate the comments I’ve read as they’ve helped me understand my son a little better. I have asked a doctor about the flapping but was told it’s just a mannerisim and not to worry about. But as a parent you can’t help yourself can you.
Hi to all,
I stumbled on this page (whilst googling Aspergers and Autism info) and am reduced to tears by reading all the comments. Its hard to describe how I feel, I am so naive to think that my son was alone with his hand-flapping. I guess I feel relieved that there are others out there.
My own emotional reaction surprises me because I had always accepted my son’s behaviour as part and parcel of his nature, something quirky, mystifying at times, innappropriate at other times and I confess, a little embarrassing when in public as I didn’t want people to react negatively to him – he is such a bright, interesting ,lovely boy!
However we are in the process of getting a diagnosis for some disorder soon, in the Uk it takes a while on the NHS! I have been told that he is possibly going to be diagnosed with Higher Functioning Autism (similar to Aspergers I believe). The word Autism slaps you right round the face. I have to come to terms with this label as I am all too aware of the the stigma associated with it.
In the hope that the experts get their diagnosis correct let me describe my son to you, to see if anything chimes with your experiences:
He is 8 years old, a “livewire” at times, a challenging, bright, argumentative boy, emotionally volatile, energetic, creative and destructive in equal measure.
He has a need for extreme movement, often pacing and skipping about as he converses with me, constantly gesticulating when excited.
He hand-flaps daily, often accompanied with explosive “fireworks” or machinery noises.
He has poor motor skills, is not “sporty”, poor at catching balls (I enrolled him in Football club and had a bit of a spy through the fence: to my dismay he was pretty much disengaged from the game, whirling his hands by the goal in his own little world!)
He has astonishing energy and stamina and is rake thin from burning it all up!
At school in year 4 he is progressing fine although is described as “very quiet” and fidgets a lot. He is an avid reader (mostly non-fiction), enthused by anything scientific or creative.
His handwriting is poor, he is unable to do joined-up writing and misspells a lot of words.
He has difficulty following instructions, likes to interpret my or teacher’s requests in his own way!If at all!
He has good concentration when in the right mood, otherwise he’s quite a dreamer.
Socially he is a little aloof, shy in new situations and a bit of a loner, spending playtime running about on his own making usually aeroplane noises and spinning his hands like propellers. He adores aeroplanes as we live under a flight path.
He collects batteries. And breaks things apart to see how they work. Unfortunately he can’t reassemble them 99% of the time.
I should mention he has always been in motion, he kicked the most in the womb of my 4 babies…he has hand-flapped since being a toddler and I just thought it was his way of managing his feelings and abundant energy. I have scolded him at times for making me jump, as he often makes loud machine sound effects at the same time, but after having read the above I realise I should take care not to shame him; he is made this way and clearly needs to do it…
I am seeking answers to help him cope with life in the real world and as he is the eldest of 4 boys I kind of need him to behave well to help set good standards of behaviour for the others to copy. At the moment they love to imitate his crazy games and sometimes I am beset with small boys flying round me, blasting me with torpedoes. I would really, really appreciate any comments and advice! on any of this. Apologies for spilling out my thoughts, I’ve never written about this before.
Lastly, thank you to everyone for posting. It means so much to find my son is in good company!
Hi Linda,
I just want to say that after reading everyone’s story, my son is most like yours. He’s also 8.
I also got emotional reading this website.
Let’s hope the world lets our sons stay happy.
Mel
Your son sounds just like mine. I just discovered it’s not Asperger Syndrome he has. The psychiatrist was SO WRONG! It is Sensory Processing Disorder. He is a Sensory Seeker. There is help for him to cope with life. We wasted four years thinking it was autism my son had.
Read the book The Out-of-Sync Child by Linda Stock Kranowitz. Now.
Oh my god – this page is awesome.
My son (now in Grade 2) has been going through the psychological wringer … “something is wrong with him” is all we are hearing. The specialist said he exhibited attention deficient symptoms .. but didn’t fit the clinical definition of ADD or ADHD. A year later we’re about to go back to him to have him look into Asperger’s .. which the school principle mentioned casually.
Since we’ve been researching Asperger’s on the net its become quite apparent that this is what I’ve had my whole life … not a bad thing per se .. but really nice to understand it. But the hand flapping .. We’ve caught my son doing it .. he’ll make a tight fist .. bring it up to his face and shake them really fast while gritting his teeth .. when he’s excited about something .. or charged .. We picked up on it right away and thought it was cute .. because good ole dad (me) did the same sort of thing .. I put my palms my head .. and my right hand flaps really quickly .. and I usually let out a gleeful squeel .. its in those moments that I’m really concentrating on something … and things are going good .. and I’m excited or happy. My mother has mocked it .. my wife just dismisses it .. but after seeing this page and all the comments .. oh my .. its nice to know I’m not alone.
Being different does not mean having a disorder ..
I left a comment here a while ago. Since then, my son started KG and had a lot of behavioral/hyperactivity issues. Although he has been to a neuro-developmental pediatrician, he was not diagnosed as having ADHD, people who deal with him on a regular basis don’t think that he could have ADHD….The hand movements/face grimmacing/pacing had doubled in intensity and frequency. I recently discovered that he has a sensitivity to food dyes red 40, green, blue etc. I have since cut all food and juices with these dyes and have seen the movements decreased significantly and the behavior and concentration levels in school have changed drastically. It took a couple of days for his body to detox, since he was consuming a lot of drinks containing these additives. His teacher had started sending me daily behavior reports and almost every day was dissapointing. Since this change, the daily reports have been “Excellent” in all his school periods, the teacher is amazed with the improvement. I had heard about food dyes and additives but never believed it or thought it applied until I saw the difference it made in my child. I always dismissed suggestions from people to buy organic/free of additives and dyes, now I see that it made a huge difference. Since yesterday was Halloween, I allowed him to have some lollipops and starburst, after a while his movements had increased to high levels again.
You may want to give this a try if your child has behavior and complex stereotypic movements, while I’m not claiming that I found a cure, I’m extremely happy with the results. Some children have reactions to these chemicals, however not all children do!
Thank you.
Thank you thank you thank you.
I’m crying at work, reading all this.
My 8-year-old son has been flapping since he was a baby.
I won’t try to stop him anymore.
He flaps when he’s happy and excited.
I love him so much. He’s bright and affectionate. Wouldn’t trade him for the world.
For those who wonder if a gluten-free diet helps, my 8-year-old son is allergic to wheat, so he’s had a gluten-free diet all his life. And he takes lactose-free milk, so it ain’t the dairy either.
He’s still flapping happy :-)
Thank you all again.
I wrote in a couple of years ago, and wanted to write an update. My son is almost 17 now, and has hand flapped all his life. He also kicked quite a bit as a baby, in response to stimuli, but I have to say, I never thought twice about it. He was a perfectly normal child in every other way. No socialization problems, although definitely not particularly outgoing either. However, as soon as he started school, he kept such hand flapping behaviors for home. We never suggested he do this, but he just seemed to make the decision for himself. Although he is now a junior in high school, I have never had one teacher mention anything about hand flapping to me. So apparently my son has kept it under wraps quite well.
My son is extremely talented academically. He has had a fantastic school career, and teachers remark frequently on his academic ability. He is number one in his large public high school class. He has plenty of friends, and is active in various activities in school, especially debate. He has never had a hint of ADHD or any other developmental issue. He makes no attempt to hide his hand flapping from the family, but as I said, it only seems to take place in our home. I would say it takes place daily, sometimes for 20-30 minutes at a time. If I had known about hand flapping earlier in his life, I might have gotten it checked out with a doctor. However, I was in blissful ignorance! I would not pursue it now with a professional unless my son wished to do so. For us, it is just normal.
So, I just wanted to say, from our perspective, that there seem to be a good many outcomes to early and lifelong hand flapping. Don’t jump to any conclusions as to how it will turn out. Of course, we all need to watch our kids, and act according to our instincts. But I will say, that hand flapping has not affected my son adversely in any way, that I can tell. It’s simply a part of his life that we all accept. My second child, also a son, has never hand flapped. Best wishes to all on this interesting journey.
Hi all,
This is a long post but I hope it’s helpful. Do keep in mind that it’s all based on my personal experience; I’m not a doctor or expert in this at all.
I’m a 24 year old woman and I’ve had the hand-flapping habit my entire life. I’m otherwise normal– I went to an Ivy League college, did very well, and I’ve just started a PhD in biology at another Ivy League college. I have a normal social life; I’ve remained very close with several people from high school and college and I tend to make new friends quickly. What I’m trying to say is: kids with this habit can grow up to live completely normal and successful lives.
I feel the urge to flap my hands when I’m thinking about something that makes me excited and happy, for example, remembering times that I made my friends laugh. If I’m alone I’ll often just allow myself to indulge in the habit because, honestly, it’s enjoyable. When I think about something happy I feel this buildup of physical energy (the same as if you were at the starting line of a race), and to release the energy and feel even happier I flap my hands and sometimes jump up and down. It’s fun, like skipping or dancing. It’s an outburst of joyful energy. The problem is that unless I actively pay attention, I don’t notice that I’m doing it. Not at all. (You’d think you’d notice yourself doing something like that, but when I’m thinking a wonderful thought I can get so engrossed in the thought that I completely don’t realize what I’m doing.)
I believe it’s possible to learn to control the habit. The problem (for me at least) is that it’s fun, so I don’t entirely want to stop. But I’ve learned to cut back on the habit a lot; most of the time when I have the urge to flap my hands I just hold my arms down to my sides and tense the muscles and clench my fists, which is less noticeable to other people. In high school I really controlled habit just by paying attention to myself and telling myself not to do it. But when I stopped caring about it in college, the habit did come back. I’ve noticed that it has flared up a lot recently during my move to a new place for grad school. I think the flare-up is stress related. Now I need to actively focus on controlling it again. If I focus on stopping the habit for long enough (maybe a few weeks or months?), I’m pretty sure it will recede. I think the key is never to allow myself to indulge in it; when I allow myself to flap my hands in private while no one is watching, I feel the urge to do it more and more frequently, and before I know it I’m flapping my hands in public. Oops.
I acknowledge that the decision to try to stop is a personal choice, and there may be other people who enjoy this habit enough that they do not wish to stop or control it. Of course that’s a fine decision to make, and it is their right to do so. But it can be a hard road to take for someone who cares about the opinions of others.
I usually do tell my close friends about my habit, especially if we go on trips together, because if they’re with me for long enough the likelihood that they’ll see me do it is pretty high. I usually say something like, “Hey, just so you know, I do this weird thing. …Don’t worry, it’s not a seizure or anything.” They usually answer, “Haha yeah I already noticed it.”
Based on my personal experience (and keep in mind that this is just my personal experience and every kid is different), my opinion is that it would be helpful for parents to explain to their hand-flapping son (or daughter) that he is not “weird” or “crazy,” but that he can and should learn to control the urge. I think the earlier a child starts trying to learn, the better; I think it would be harder to learn as a child got older. Learning to control it has made my life much better. I think it would be a mistake to encourage this behavior by praising it or being amused by it; I think that would make it much harder for the child to control it. When I was little, my parents told me (kindly and gently) that I should probably learn to stop so that other people wouldn’t tease me. That helped me; it made me actively think about stopping, which worked for me once I committed myself to it. Fortunately, other kids never made fun of me (within my earshot), but I’m sure they would have as I got older if I hadn’t learned to control the habit.
Interestingly, it seems like the hand flapping behavior can be learned from others. My next door neighbor was an elementary school English teacher, and she said one year all of the girls in her class started flapping their hands. She called it “flying south.” My sister (who never did it as a child) picked it up from me when she was in her teens and now can’t stop either. Two of my closest friends (who are unrelated to me and both girls) picked it up from me when we went on trips and lived in close quarters together for a few weeks. (I’m pretty sure both of my friends have since stopped.)
This really is a difficult behavior to control because you truly do not realize that you’re doing it. I had to learn to pay attention, monitor my own thoughts, and stop myself before I started to flap my hands. It’s not perfect, but it works when I want it to—I almost never flap my hands in public.
I have occasionally wondered whether medications might help me stop this habit, but it’s never gotten bad enough for me that I’ve seriously considered it. I’ve never even talked to a doctor about my habit. It just hasn’t been a big issue in my life. For more serious cases, though, I can imagine that medication might be last-recourse option worth considering if the individual has reached adulthood and really does want to stop.
Well, I hope this was helpful. Best of luck to all you flappers, with whatever decision you make!
Thanks Alison! Very insightful. Thanks for taking the time to share your personal experience with all of us. I read parts of your e-mail to my 6 year old, it really resonated with him.
Hello Everyone!
My son is now 15 years old and I just had him rediagnosed by an autism center. They told me he doesn’t have Aspergers now after a doctor previously told me he did have it. They now say he has ADHD. My son has a lot of issues and he has done the hand flapping. As he was getting older I suggested he try to hide it more so he wouldn’t get teased. He then started grabbing the bottom of his t-shirt with a firm grip and shaking it. He would mostly do this when he would get excited or watch competitive sports on TV. I guess I am still in a bit of shock that he wasn’t diagnosed with Aspergers. I was wondering if the hand slapping can be a sign of ADHD?? I need to call these expert doctors to discuss his diagnosis and was wondering if anyone had any info or questions to ask them. He doesn’t take any meds and am wondering if that is their next step. Thanks for your help! Worried Mom
I have submitted here before, but will offer an update. My son is now 4 1/2, and has been noticeably flapping since he was 1 1/2 years old. We have been to many Doctors and therapists and have gone through major ups and downs to figure out what is really going on. We are certain he does not have aspergers or autism, but he does have sensory and imbalance issues. He is very social and loved by everyone. He does have some attention problems, so we have put him on Strattera (20mg/day) and it has really helped him focus and even play better with his friends. As for the flapping, his friends are use to it by now and think it’s cute and funny. However, I have been telling him, now that he is becoming more socially aware, that he should try holding his hands together or use some other methods to control his excitement. It only happens when he is excited and he also grits his teeth and makes a funny noise. I personally think it’s a quirk in his nervous system and as he gets older, he’ll think of creative ways to hide it. The hand flapping may be a sign of a miss-wiring somewhere in the nervous system..which may be somehow related to other nervous disorders. I’m not getting crazy over this…could be much worse!
You got to give them something to do with they’re hands,like a tech-deck it might help/
My son is a beautiful 25 year old young man who has been hand flapping all of his life. Does it matter? No.
When he was a teenager he hid it more, but it was never an issue and never will be.
Recently he told me that when he hand flaps it gives him inspiration and creativity.. or inspiration and creativity comes first?
Whatever, it’s not a big deal. I only wish that I could be that creative and imaginative. So if I had hand flapped I might have been more creative, who knows?
In any event, he is lucky, beautiful, talented and kindhearted. I wouldn’t change a thing about him.
WOW!!! I’m so glad to come across this website blog and know that I’m not the only parent that has an autistic child that flaps on a consistent basis. So where do I begin? My son, Evan, is 8 years old and has been flapping all his life. He finished special education for 3 years and is now moving to mainstream school. It’s a small religious private school. Fortunately the kids don’t mind him flapping and haven’t teased him about it. He has always been a bright kid. He was tested on his non-verbal skills and was borderline gifted. To tell you the truth, he is much more of a visual learner as most autistics are. Evan also has add, which I give him homeopathic supplements (“Attend”) instead of the run of the mill stimulants that causes serious side effects. It has helped him focus in class and his aggressive behaviours have improved. He has been getting straight A’s for the last two semesters. I think he has been more of a success story than anything. He has come a long way since his “autism” diagnosis. With hard work and patience and not giving up on your child, they can succeed in life. The stimming is another part of Evan’s life that still goes on. He stims when he gets excited or has too much energy. I know with my son, it’s the dairy and the sugar intake that aggravates the stimming. I let him stim at home as much as he wants, but he needs to control it in the classroom setting. It’s quite a challenge for him because he gets excited or has excessive energy building inside of him. And also, if they have to stay inside due to rain or bad weather, it’s hard for him to control the stimming also. I think maybe an afterschool outside sports activity would also help control his stimming too. I hope this helps some of you out there that are trying to find answers on how to control the stimming. It can be a distraction at times, but don’t give up on them. I know I didn’t and look where he is now. He is flourishing in a mainstream school with all A’s. A mother cannot be any prouder.
Check this out …
http://www.taap-project.com/
I am going to try it with both my kids, regardless of no ailment.
I been concerned for yrs my son has found a doctor that has took the time to realize the might be a problem. Since he repeats vocally and writes the same phrases over and over. Plus the arm flapping while jumping when excited. obbession with time and plans
This is an answer that none of you want to hear.
A combination of Paxil along with a small dose of diazpam or one of the related drugs has eliminated the symptoms, in myself (adult apie, my son college age aspie, and my daughter almost tween. )
Has worked for my son who displayed the worst symptoms since he was 10 — over 10 years, and the rest of us for several years.
One MD, diagnosed the overstim condition as being related to social phobia/anxiety and prescribed accordingly.
All the advantages of the aspie brain without the social stigma. All of the rest of the approaches behavioral, OT, etc. had little or no effect.
A thearphy called interactive metronone was helpful, however with some related non-stim issues
Let me add a short note, the diet changes DID help, but they were short term. Eliminating food dyes, zinc and b-12 were what was effective (and those are still used) it is just that the effect was not lasting, 6-months to a year)
But probably a dang good idea anyway, esp. the red dye.
Thank you, veryone, for sharing your deeply personal concerns about your children or yourselves! My daughter is almost 7 and has been “hand-flapping” since she was an infant. As a baby she did it whenever we sat down to eat and she was anticipating food, but as the years have gone on, she does it quite often. Sometimes when she’s excited or upset, sometimes when watching television (which we are limiting, due to the fact that she has a hard time disconnecting from the screen), sometimes when explaining something to myself or my husband, and now even when she is playing alone. The latter concerns me the most, simply because I watch her and she stares at her toys, twisting and flapping her hands to an extreme I haven’t seen until recently. She is amazingly bright and does very well with her schoolwork, as well as being an excellent reader. She makes friends very easily, but seems to have a more childlike view of things than some kids her age (which I consider a good thing, seeing how fast kids grow up!). She does really enjoy playing alone, and I have also noticed her opening her mouth and twisting her tongue around quite a bit just recently. I was encouraged to read these posts because I have been worrying myself sick with what to do about this. I don’t think there is anything wrong with her, and my husband and I have a very hard time with every child being diagnosed with something these days, but it becomes difficult not to be concerned when it is your baby experiencing something different! At her 7 year annual doctor exam I plan on bringing this up to her dr, but when I asked about it 3 years ago, he said it was totally normal. As I read all these stories, I see that it is more common, but I still have a hard time believing that there isn’t something that is making her do this that other children do not experience. I also get a little concerned because I occasionally see my 11 month old son flap his hands a bit around food, but I think that most babies do some variation of this. I have always thought that as she got older, my daughter would stop on her own due to social pressures, but it has only increased as the years go on. She is homeschooled, so the pressures of children in school do not get to her, but I do see her friends and cousins ask her about it… And all she says is “I do it when I’m excited” and it is dropped. No one ever makes fun of her, but I do see the looks that adults can give her when they see it, and it deeply upsets me. Thank you all again, and if anyone has any suggestions at all on how this can be better handled, please let me know!
@Torian
Wow…..Your comment totally mirrors my soon to be 7 year old son. Social, bright, energetic. His pediatrician dismissed it until I recorded the movements and showed him the tape. He was referred to a developmental pediatrician and was diagnosed with Complex Motor Stereotypies (Normal Developing Child) and Sensory Integration Disorder (visual, auditory and vestibular)–He also dismissed the possibilities for ADHD or Aspergers.
He has shown amazing improvements in the sensory area after some therapy sessions. The movements persist, some days more than others–I noticed the movements get out of control and more complex with food coloring/preservatives consumption. I have changed his diet and try not to give him anything containg Red 40-Yellow 6 or others. The improvement has been remarkable and although the movements have not disappeared they have decreased a lot and he is a lot more focused. I would rank the movements going from a 9 to a 4 in terms of frequency.
Hi,
This is really interesting. I am a 21 year-old female and I have always flapped. And I have no disorders. I read so many times in the above post that parents at first thought their children’s hand-flapping was “cute” but then realised it was something else and something wrong…… This perplexes me. I have hand-flapped all my life and no-one has ever thought anything of it, other than that it is a thing that I do. My uncle and others used to tease me that I was a bird trying to take off when I was a kid and I would run around in circles flapping my hands. Nowadays I’ll only really get caught flapping if I’m alone and someone walks into the room and I was thinking to myself or if I’m thinking to myself and my boyfriend is also in the room and starts teasing me. But he just thinks it’s a cute thing I do too. No-one has ever thought it was anything else. Because it isn’t. A cousin of mine who is 5 years younger than me did exactly the same thing as a baby and everyone exclaimed that he was just like me. It’s just a family trait – something we subconsciously start doing when we’re excited.
To people wondering if hand-flapping alone is enough to suggest your child probably has a disorder, the answer is NO. Until today I never had a clue that anyone would ever think hand-flapping was anything other than quirky – not “wrong”.
my son (age 5) hand flaps bounces and grinds his teeth all at the same time mostly when he is watching t.v. or gets excited. He also has speech and language dissorder, every time I speak to his specialist she just dismisses it. I seem to be banging my head against a wall. I know my son is special and not the same as other children but when the doctors wont listen what can i do? Thank you every one for your stories and making me realise im not alone.
This is exactly what I needed to read. My son has been flapping his hands and looks up to the sky/ceiling when he’s excited for several years now – he’s 10. I was initially worried that he would flap forever and although I loved it when he was smaller, I started to worry me that his flapping might last the rest of his life. I’ve had him tested and I’ve been told he doesn’t have autism or aspergers but I wonder sometimes. He’s very smart but lazy when it comes to actually having to do the work. Math is not his best subject but he loves to read and excells in that area.
Sam doesn’t have many friends at school and I believe the flapping is keeping kids at a distance. This makes me sad because as I mom, I think he needs friends in order to be happy. He has shared with me that not having any friends makes him sad, but his confidence in being alone is really high. His teachers often tell me he’s on the playground reading a book and seems very content. We’re almost at the end of the school year and he’s now he’s playing with other kids on the playground – mostly basketball; he’s tall for his age.
I thought I wanted him to be normal – the kind of normal that society wants, but what I really want is for my boy to be happy. I love him
I am so relieved that my two sons aren’t the only ones doing this! Yes, not one, but two sons, and yes, I remember doing it too as a child. My hand flapping has progressed to hand clapping and head-scratching … I always knew it was a bit weird so have kept it quiet and private, and my own husband still does not know!! And now I have two sons who both flap madly – and often at the same time! I am not ashamed of them and don’t consider it a disorder. They are beautiful boys, and they will learn to deal with it in their own way and in their own time, just like I did.
hi
my neice has a problem since when she was 2 and half year old…..my brother was going to saudi arabia with his wife for religious matter(hajj)……..before that her daughter would call him papa /…….play with toys intelligently…….other things normally……but when he comeback he told us that he is seeing some differneces in her daughter…..we thought of this is a case of child loving….and seeing too much ……but finally …his worries got right…my neice was having problem in school….she was not playing,talking,etc…….then she was diagnose with ADHD………but afterwards it was autism……..she is now 15 ……she is not potty trained……
do not communicate properly…….or even his communication is i think 10% atmost…with no clear commands…….hit his sisters…..sitting for hours at one place ………very limitd IQ level….is she is a definitly a case of autism??????
from all your posts your children has not this kind immovability…..what should i do….?
onlyfrom symptoms someone can be diagnosed of autism…..
please help
I have a 3yr old daughter and she flaps hands when she is excited or happy…..I noticed that whenevr she eats chocolate she is hhpyeractive and does more hand flapping.She is diagnosed with moderate global developmental delay.can someone giv me suggestions to help my daughter stop hand flapping.
Thanks in advance.
My daughter hand flaps. Her diagnosis isn’t autism but she has some similar traits. She had a meningitis like collapse a few days after a dufficult birth, has brain damage, and I have some traits of high-functioning autism/adhd(pi) and dyspraxia and borderline and ocd. I also consciously do it when I get afraid I have over indulged in some snack to burn the calories and a little/prevent a bloodsugar spike – the idea in my head is that anyway. I have just this evening formed the idea that the flapping is not actually a stim initially, it’s a reflex in response to a hormone/blood-sugar spike of some kind in response to a stimulus – like wind or an exciting noise, and it has parallels in the flapping of very nervously excited normal people – there are times when this sort of behaviour is deemed normal, even attractive and demure/sassy/sweet depending on context.
I think it may be strongly related to hippocampus and amygdala and related brain-gizmos and pathways/sorts of stuff. Just looking back at the wikipedia pages I tread this evening mentioning these structures that were part of the idea crystaliising it made me think again this fast stimming may be realted to the epilepsy the article was about and be a kind of seizure. Maybe there is a bit of both seizure and energy use akin to shivering to mop up excess products of stimulation – seizure migfht come first or the body-brain link may end up on some kind of loop, like in a seizure or hypnotic trance.
I was speaking about the fast flapping that may accompanied with legs kicking when lying or rockingin a lower-body-leading type of wave formation, anyway rather than the slow more deliberate muscle-testing or hynotic rythmed kinds of events you see. This fast type is what my daughter does as well as taut (as in tight, tense) grimacing involving her whole body. She also bends over and freezes up in this position, maybe tense and flapping as well down there, legs perfectly straight, bent at the hips. She has visual impairment as well – it may be sensory-feedback being cut down during times of anxiety or over-stimulation, or needing to think, as well as sensory stimulation or predictability, or oxegen-levels at the floor – like a concious faint??? .
I was reading something on wikipwdia about eplielsy and intermittent explosive disorder having looked up de ja vu upon exeriencing one, and eating rather a lot of pringles against my better judgement and debating with myself what may be the cause. And the remedy.
I wonder if the more slow kinds of flaps which she does less often which I have seen in others, where the fingewrs are closed and extended in a taugt rythmic fasshion, or fingers do this partially like a little wave, are related closely to somato-sensory obsessions – a form f ocd where basic physical actions particularly unconscious and fundamental ones like breathing, heart rythm and swallowing becaome the focus of conscious anxiety and attempts to regulate them. Maybe these flapping episodes in an older child cross back and forth betwwen them, the types of flapping I outline; from self-regulation attempts when overly aroused(technical way of using that word)/ over-excited to obsession and compulsion to hypnotic state.
Which kind’ve brings me to my ideas to tackling this. We need to be kind to ourselves and them. Reflexive behaviour that treats the hand-flapping as positive and characterful and rational can really end two or three ways – it can be good and even deepen a relationship and strengthen social behaviour – because mirroring and complimentary symmetry in behaviour is so important and deep in social behaviour and mainly sub-conscious reinforcer that it is difficult to give to autistic children. The mirroring may be fun and silly and relax everyone and then a new distraction found stops the flapping for now and makes a ‘serious endeavour’ possible. Or it makes the person aware and maybe lead to anxiety or annoyance, which in a good world may lead to helping them ‘get past’/'done with’ hand flapping or is still social negotiating and engagement that teaches a brain something, if done with compassion and caring and the bond is maintained.
Flapping is a funny peculiar thing, and sometimes funny haha – especially to young mainstream children with a reason to not be careful what the person feels, somehow, or just too much not to be funny. Tension and anxiety about it as an adult parent are common and natural – everybody is disabled, there are things we’re just not able to get past. Except we can be able to get past more if we’re helping and gent;e to ourselves rather than cross or panicked or stressed. And this is advice we know we give to ourselves about being able to calm our child’s behaviour – being reasonable and empathetic rather than exacerbating the stress in reflexive cycle/negative feedback loop.
I think this wont affect, or won’t know how it will or could affect, a stimuli-related reflex or semi-concious reflex to burn off excess blood-sugar/arousal hormones – and relieve related discomfort. Interesting avenue to follow in research but I’m not that woman to go there at the moment. Mum with half a degree in countryside management, poet-philospher, internet activist, better demans on her time than these fripperies too being family and keeping on top of all things domestic All part of the same job in various ways and it isn’t a frippery really, activism, when it’s trying to save people from misery. Mmm, got to go to bed; but I believe I am not whistling in the dark but under a galaxy of interesting points, and trying to make the music and the sense actually fit.
Amy got up the slide at Harewood house today – it involved huge amount of bravery from both of us and we’ve been working up to it – several visits. She was climing up all the ladders of logs and equipment she was really scared of until now. Major breakthrough. Partly based on trying to give her what other children would have basesed on her needs – a little help alittle encouragement and push and ‘you can do that yourself; you can be brave’ when you know she can. It’s really difficult picking the moment and I did fail lots already but I think I got there today. And she did amazingly.
Another thought; I worried I had tb and thought a lot about cancer and tar on the lungs from passive smoking and bits of food that get in the lungs and may stick there and cystic fbrosis and the lung physio they do. I went to the doctor and explained the reasons had for wondering about tb but also my anxiety/ocd tendancies; she was really vely and took me seriously as well as being concerned and ‘bless you’ about the anxiety acknowledgment. She looed at my sats (blood oxygen saturation level) – it was 100%. She’d not seen that for years, apparently. I give credit to teaching myself to cough and breathe and feel in my lungs deeply and methhodically searching for blockages and meaning to give the cillia in my bronchae a helping hand. Maybe it makes our instinctual responses to health worries more rational than them may seem; and possibly hand-flapping is a self-healing mechanism we can really hinder or help and develop…?
Watcvhing other kids with hand flapping and repetitive tapping of things like tube slides, nice ding, and wooden plaforms, at the park today and a different park yesterday and the reactions of support assistants with them was part of the thinking as wel. Probably made a pigs ear of including information relevant to my devloping thinking and giving you a clear idea of it – or is that ocd talking or false modesty?? oh-hummm. Night!
My son was six when the psychiatrist said he had Asperger Syndrome (AS) based on his hand-flapping alone. (My son also loves music). Aside from narrow interests, not being able to connect with peers his own age and having poor fine and gross motor skills, my son has no other AS symptoms.
My son is now nine half. And I happened to just read The Out-of-Sync Child. He fits the description of a child with Sensory Processing Disorder (SPD) to a tee. He’s under the Sensory Seeker category. A child within the autism spectrum may display SPD symptoms. A child with SPD may display symptoms of autism spectrum but does not have autism.
I suggest you seek consultation with a psychologist who’s familiar with SPD. Or read the book! We’ve wasted almost four years when we could have sought crucial help from occupational therapists (one has confirmed my son has SPD) to help my son cope with school.
Hello I have a 2 a two year old and her friend is the same age he has autism and although he may not flap he stims by taking pens forks spoons etc and its his way of calming himself down after he gets too excited I watch him and his mom and I give him time to stim that way he isn’t robbed of his way of calming himself he keeps everything the same and it helps that way its so important to allow your child the control to do what they want when they are given guidelines of when they can do it
It’s so easy to love children—especially the ones who are so free and innocent of the rigors life puts on them. My 5 yr old grandson flaps and seems so free when he does so. I notice that people of all ages bounce their leg when sitting down, or drum their fingers, pop their knuckles, chew gum excessively fast or constantly scribble on paper. All of these actions are common with people of all ages, but nobody criticises them. We really need to educate ourselves and everyone with the fact that moving in these ways may make us uncomfortable, but obviously they calm down or soothe the person. Let’s teach tolerance and acceptance, as none of us fit in the ‘norm’.
I’m so happy to have found this web site! My daughter who is now 10yrs old is perfect in every way…she’s clever, very sociable, confident and quite artistic which i envy! My daughter has been hand clapping since she was probably about 4 or 5yrs old…which she tells me she does because she feels excited and happy. I have never understood why she does it and have quite often told her to stop it as it’s weird and i worried that she would be teased at school as a few kids had already spotted it but it doesn’t seem to bother her them asking,but after having read most of the stories on here, both from other parents and other hand clappers. I now realise that the problem does not lie with my daughter, but with myself for not understanding her and respecting her little ways. Now that i know that her hand clapping is not as strange as i’d thought and knowing that there are many children and adults just like her makes me realise that it was my ignorance and negative remarks to her, that could potentially damage her, not the odd comments from friends or strangers. So when she gets back from her school trip tomorrow, i shall sit down and apologise to her and also read through some of the comments on this web site with her and learn to understand that her little ways are just absolutly NORMAL and part of who she is…just perfect…and i wouldn’t have her any other way!!!
Thank you all for posting all of your stories. I have a son who is now 4 1/2, and has been hand flapping since he was a baby. I never thought anything of of it. He hand flaps when he gets really excited. I haven’t noticed the kicking or opening of the mouth yet. He just jumps up and down while doing it. I ask him why he does it and he just replies, “because I’m excited!” We recently went to see Toy Story on Ice, and he flapped happily away for the first 5 minutes, and then stopped and sat watching the show the rest of the time. Some people sitting next to us noticed his flapping and looked over, but were smiling when they did and I just replied, “Can you tell he’s really excited?!” They nodded and smiled and we all went on watching the show. I do think it’s just a way to get all that excess energy out. He just started preschool this year, and his teacher has never mentioned it to me although I’m sure he does it there. Now that I think of it, I think he actually did it in front of her at the open house, and we just said “that’s what he does when he’s really excited,” and she just said, “ok!” Although I think it depends on the teacher and how comfortable they are with it. (and as an elementary teacher myself, if handflapping was the worse thing that ever happened I would be very happy!!) I have never brought it up to our pediatrician, because i wondered if it was a stage he was going through. He is very energetic and loves imaginative play, playing outside, riding bikes, the usual stuff a boy is into. He plays games onling at pbskids, and will get excited about what’s happening and flap. This is when he flaps the most.
He is very affectionate and makes eye contact. The only time he doesn’t want to make eye contact is when I have to talk to him about any innappropriate behavior. But he always wants to sit right next to me or his dad, and likes to give hugs and kisses. He always makes eye contact when he wants my attention, and when I say his name to get his attention.
I might bring it up to my pediatrician at his 5 year visit just to see what he says. I personally am more concerned about him being a good person, respectful and friendly with others, and giving his best in anything he does rathar than whether or not he will flap his hands the rest of his life. He was born 2 months premature, so if don’t know if this would affect it? He is bright and catches on fast, knows his alphabet and sounds and is beginning to read, can count to 20, loves patterns, and the only thing his preschool teacher has told us is that one day he had a hard time listening to the teacher and we talked to him about it and he’s been doing fine.
He is a very happy boy and I’ll keep you posted on anything else that happens with us! And a special thank you to the people posting who have been hand flappers their whole lives! I appreciate your stories and thank you for helping all the rest of us get over ourselves and understand more!!
I’m so happy to read all of the wonderful “hand flapping” stories. My grandson is just turning four and also has been flapping, jumping and has the open mouth and excited eyes since he was a baby. He knows when it is coming on, because if we are watching a movie in bed and it’s getting exciting, he sits up on his knees. I say “watch out, he’s getting into position”, and we have to dodge the flying arms.
He has a great imagination and is very intelligent, creative and 150% boy! He’s very aware of his flapping and is not embarrassed by it at all. He says that he’s “so excited!”. We think it’s adorable and very fitting to his happy, excited, affectionate personality.
We also catch people looking when we’re in public and we respond by saying “that’s what he does when he’s really excited”. We’ve talked to him alittle about other options when he’s in public but never try to make him feel embarrassed. Sometimes if we tap him to ‘break the spell’ he just tells us to stop because he likes doing it. I’ve read many stories from adult “flappers” and they say you learn when to control it, so we’re not worried. I think it needs to be made clear to his teachers when he starts school that he’s not “different” for flapping, just very expressive!
I was so relieved to read all these comments. I always thought I was the only person who did this and I was crazy…. It is very difficult to describe the joy , creativity and immense physical pleasure that comes with hand flapping or any other ‘stim’ behavior. I flapped, in private, from the age of 2 to the age of 12 when I made a conscious decision to stop because it was interfering with my life and I sensed it was somehow “wrong.” Resisting the urge to flap was as physically painful as……..I can’t even think of a good analogy. Once you stop you can’t go back….it’s like like locking a door. Flapping and my other self stims don’t transport me into another world anymore.
I wish I could to say that I have a totally normal life, but that would be a lie. Things are not going well. I am unemployed and have no friends at the present. I don’t even get pleasure from daydreaming/fantasy anymore. My psych says I don’t have Aspergers or ADD, so I don’t have a clue……I had all the early intervention in the world as a child and it was singularly ineffective as I am nowhere near being a normal person. I can’t seem to keep a job or succeed at anything….I’m 28 years old for chirstsake and I live with my parents. I think they would be better off if I died.it’s a cliche but in this case it’s true.
Oh, I forgot to answer the original question. What should you do about the hand flapping….I would suggest trying to transform the flapping into something more socially acceptable like playing with a rubber band or a paperclip, a soft blanket, or even drumming her fingers on a desk top. Perhaps this tactile awareness can be channelled into sculpture or painting…or she could flap with hands in her pockets… Just some thoughts. The orginal post is almost four years old. How’s your daughter doing now?
Fish,
Don’t be so hard on yourself….I’m in my mid 30′s, and plenty of my friends have lived with their parents to regroup. My son flaps, and I see the challenges he might face when he gets older as he has trouble focusing and staying on task. But that is no reason to give up hope. I know in that beautiful imagination of his (and yours) there is an indescribable talent. Look into Stereotypic Motor Disorder and look up Dr. Roger Freeman. I believe his paper offered the most insight into what my son (and possibly you) experience. You may want to contact him.
There are so many wonderful non-conventional ways to live your life. Explore. Volunteer! Get outside as much as possible.
I wish you the best!
Hi Fish.
I’m glad you posted. It’s amazing that 4 years have already passed since I posted this. Since then more than 43,000 people have read this page and who knows how many more will read it in the future. Your insight and personal experience is invaluable and extremely helpful to understanding what my daughter may be going through now and in the future. She was diagnosed with “mild autism”/likely Asperger’s 5 years ago but she has since progressed significantly to the point where it seems wrong to label her as such. She still has challenges though. Socially, she is getting by but it can be difficult and confusing for her sometimes (as for many others too). She still flaps and appears to need to flap but tries to hide it as much as possible. Your comment has reaffirmed my belief that it is nothing that should be stopped. I’m sorry you are unable to benefit from it anymore. I guess that makes you like all the “normals” from that perspective.
You sound depressed and I hope it’s not too serious. I battled depression for a long time but I believe I am over it thanks primarily to the book Feeling Good by David D. Burns and support from a decent doctor. Another book called Mind Over Mood might also be useful. When I was depressed everything was crappy and hopeless and magnified. I had very little motivation to do anything and was just going through the motions (almost anyone who knows me would be surprised to know that). Please believe that you can change the way you think and you can feel better and although things may not seem to be going your way right now nothing is permanent. Meeting people and opportunities for a life change have come to me in strange, unexpected, and unplanned ways. The scripted, fairy-tale life that many people expect or believe to be normal is more myth than real. No one has a perfect life and everyone has some cross to bear so don’t be fooled by appearances. Things can change. Don’t give up hope.
It’s hard to know what effect various interventions or supports have had on my daughter. You may think whatever interventions you have had has done nothing for you as you didn’t end up being a “normal” person as you say but have you ever thought where might you be without them? It’s an impossible question to answer but the point is that maybe you unfortunately started the race well back in the pack but thanks to your parents you didn’t stay there. Perhaps you should shed the idea of what a “normal” person is because frankly everyone is peculiar. It’s a matter of degrees.
Thanks Amy and Aspiring. Both of your posts helped me more than I say. I’m volunteering now and getting outside more, thanks to you Amy.
Aspiring I’d like to read more about your daughter and your journey together. Do you have a new blog?
I’m with u every step of the way, I’m doing the same with my 5yr old son, purely cause I don’t want cruel kids to pick on him
my son has been flapping his arms since eight months old he does it alot when he has a toy in hid hand it looks kinda like he is just playing,his kindergarten teacher and myself have been noticing him do it more but happens alot when he gets excited.he does this about 50+ a day the Dr said its his imagination a year ago now i showed him vidto of him doing it,now he thinks its mini seizures. idk ehat to think i have searched up on autism the only symptom is the flapping.he has to go see a neurologist. what do u all think.please need
My daughter has Down Syndrome and is 5 years old, she tends to use small books, sticks, leaves and gets transfixed and stares whilst flapping or twisting or holding the item (doesn’t usually flap without an object) sometimes between just her 2 middle fingers and twisting things around with her wrist, she can do this for ages, especially noticeable when at home or if left in the playground at school. She gets very upset when we take the item away – but it gets so annoying as left to her own accord its all she does and wondering and stressign how ingrained the habit is becoming. I feel exhausted as I have to often break her out of the behaviour to model play sequences. She also excessively grinds teeth – but I think this is hugely down to her chronic sinus infections – any diet advice? or similar experiences? we have seen an OT who has identified sensory issues – which we are tackling, but not sure if it helping much.
My boy gavin walz is a flapper. We try to joke around and make him feel good. I tell him that he can fly us to disney world
Please help my son is going to turn 6 and everything u have benn saying about your child describes mine if you would like to guide me I feel lost as I’ve been told by a lot of ot they really don’t know how or why this starts and like you said I want the best for our children to be able to stop thisi would like to get intouch with mother that are going through this to help each other guide out children. My cell 7144726779
If either of the above three treatments worked please let me know.