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!
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.
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 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….)
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 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?
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!!
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!