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.
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 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!!
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.
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 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.
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?
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).