Why Do We Flap Our Hands?

This post has been edited and re-posted on my new site:

Why Do So Many Autistic People Flap Our Hands?

 

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30 responses to this post.

  1. Yes, exactly. I have stressful movements, but also happy ones too. Flapping is usually happy/content for me, whereas anxiety is more handwringing/facerubbing/finger-combing hair/etc.

  2. Thank you so much for creating the transcript! It was very helpful.

    I also flap my hands when I’m happy, and not when I’m upset. I think you raise a really valid point about how when you see someone flapping their hands (or doing anything at all…), it’s a bad idea to make assumptions about what it means, and should try to learn about what it means for the specific person you’re dealing with (and sometimes the specific situation, as well). If you’ve met one person, you’ve met one person, and I don’t see why that shouldn’t apply to autistics or any other group that has a label as much as it applies to anyone else.

  3. thx for the post, great points. It’s the one lesson I’ve learned over and over, as I read experiences…lots of autistic experiences do not match my mine…and my experiences do not fit everyone elses. As I write about these issues, I’m constantly saying “Speak for yourself”, just to keep myself focused on writing what I know and nothing else.

  4. Posted by Steve on January 12, 2014 at 9:54 am

    Thank you for writing this.

  5. From a biological point of view, stimming increases both cortisone levels and endocannabinoid levels (the same as in a “runner’s high”).
    One does not need to be sad or anxious for thus to be an attractive goal :)

  6. As a parent of a 13 yr. old I thank you for “your perspective” I know that not everyone is the same, but a appreciate everyone’s perspective. Thank YOU!!!!!!

  7. Posted by Linda on January 12, 2014 at 11:11 am

    thank you. I will no longer ask my 8 year old to stop flapping. You opened my eyes.

    • Thank you, Linda! You really made my day! Your child will benefit from the freedom to be themselves and focus on working on improving other, more crucial things like managing stress and learning how to navigate the world.

      Don’t be afraid that your child will not be able to find friends or respect because of moving in different ways. I have a partner who loves me, friends who value me, and a happy life and your child will have good things, too.

  8. Posted by Kat Lawson on January 12, 2014 at 11:12 am

    My daughter snaps very much for all of the same reasons. She also snaps when someone else has succeeded in doing something. Great post. People with autism and people with autism. NOT a blanket label. They are just as individual as us neuro-typicals.

  9. Not only that, but, surely, repetitive thoughts are outright DANGEROUS and destructive, not an improvement in the least?

    • I guess it depends on what the video-maker meant by repetitive thoughts. I don’t think I have repetitive thoughts, myself, so I can’t speak to what he meant by that. The only time I have those kinds of repetitions is sometimes if I am very anxious and just trying to get through the day moment-by-moment, I will go someplace where it is safe to talk to myself without people getting alarmed and trying to intervene and just repeat out loud, “it’s all going to be okay, it’s all going to be okay, it’s all going to be okay” as a way to calm and soothe myself. That is the closest I ever come to repetitive thoughts and it is more like a conscious meditation rather than a stim.

      But otherwise, yes, I’m afraid of the idea of repetitive thoughts. I really like my brain and I like using it and I need it a lot. It takes a LOT of cognitive overhead to leave my apartment and “hold it together” enough to navigate the world safely. If my brain were being used up with repetitive thoughts, it seems that it would drastically diminish my ability to cope and get my needs met.

  10. Posted by Alecta on January 12, 2014 at 11:59 am

    There’s nothing wrong with someone talking about their experience in autism, even if it differs from your own. As you said, if you’ve met one person with autism, you’ve met one person. For me, it comes out more often when I’m stressed or upset (and becomes more violent – if I’m really upset, I’ll hit, throw and grip things too tightly, as well as flap), but also comes out when I’m so happy I can’t contain it. Everyone has their own experience and reasons for what they do.

    • I agree with you. I was trying to communicate that what I found disturbing about the video was not that his experiences were different from mine but the way that I felt he was devaluing hand flapping and other stims by calling them annoying and ridiculous looking and appearing to imply that we want to get rid of them but are stuck with them because trying to stop them will just result in something worse. I think it’s great for people to talk about the different experiences in autism but I am bothered when people appear to be intolerant of others and his presentation came across to me as if he thought stimming was something awful that we have to grudgingly put up with until we can get rid of it or sublimate it into invisible forms like mental repetitions so that other people won’t be bothered by us moving in different ways.

      We all have the right to live in this world together and flapping my hands isn’t hurting anyone else so it bothers me when other people say I should stop doing it and start running thoughts around in my head over and over instead.

      Other than that, I thought it was a great video!

      • It’s also because the video was made by people who call themselves Asperger’s Experts. So they claim to be speaking for a large group of us. Whereas your post (and indeed your entire blog) speaks of your experience, and leaves it up to the reader to draw parallels or to distill an element of recognition. You don’t claim to be an expert on autism. Just on you.

        • I agree with this, that is what is wrong with it – that he claims to talk on behalf of a large diverse group of people whom he mostly don’t know. Already the name “Asperger’s Experts” gives that attitude away. It is quite likely that people who seek & find these explanations (especially parents to kids they are struggling to understand and handle) believe that what he says really is a full explanation – that is annoying.

          I also find the way he talks in this video annoying (not in all the videos, I checked out a couple of the other ones too)… hyperactive, super cheery superficial and sales-man like. Perhaps that is because he is nervous, and perhaps his stims annoy people for similar reasons… precisely the reasons he explains in the video; his family may associate the moves with him suffering and being about to burst into a meltdown – and perhaps people have always been busy pointing out to him that his moves were annoying … that could be what has created his perception that stims are (at best) a necessary evil which inevitably annoy other people.

  11. I have a flap or other repetitive hand thing for every emotion. Not just one. (I look at my hands to figure out which one too).

    This video is not my experience at all.

  12. Posted by Meg on January 12, 2014 at 6:28 pm

    My 3 yr has flapped his hands since 3mths of age. He does it when excited!

  13. “My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.”
    and “…if you don’t already, there may come a day when you begin to see the beauty in hand flaps. Because they are quite exuberant and lovely if you remember that they are a person’s heart and spirit made visible in time and space for all to behold.”

    Absolutely yes! I love this post. Thank you for sharing your thoughts on this. So carefully thought through and beautifully said.

  14. OK, HELP ME WITH THIS ONE PLEASE! Your views have often offered insights into my son and helped us adjust our thinking to better help him.

    I absolutely adore my son he is cute sweet and wonderful. He often flaps his hands with joy. I call it his happy dance. However he moans so loudly it drives other children (and their parents) away! I have tried to explain to parents but their children, who are also only four, become frighted as it does sound a bit like growling.

    When my child flaps his hands only, the children generally at this age take it in stride, but the noise he makes is so loud, no amount of explaining will get them to include him.

    If he liked being by himself it wouldn’t matter, but he often approaches other children as he is interested in them. ( Under the umbrella of the “spectrum,” he has huge language deficits and is extremely sensory seeking but he is quite affectionate and generally wants to engage people once he gets to know them.)

    I don’t want to change my child yet I don’t want to see him ostracized. Like I said, the flapping is just a happy dance, but the yelling moaning and growling I just can’t ever see being accepted. This habit is not winning him any friends and I often see him want to join in.

    I fear this habit will really hamper him finding friends or even someday having a job as it is loud and distracting to most people.

    (As his mother I hear it so often I tune it out without realizing it, until someone rudely points it out…)

    How do I help him? I’d love to change the world around him, but I doubt that is going to change in my lifetime. He deserves to be happy, I know he is lonely. Any thoughts?

    • Without any idea why he makes the sounds, I don’t even know where to start. Are they happy sounds or sounds of distress or are you able to tell?

      • It is just as you said, for different reasons. Occasionally he does this when he is stressed but generally it is when he is very excited and happy.

        Some examples would be when he goes to gymnastics free play, (something he loves) when his favorite song is playing on a video, jumping on the trampoline or when he is at the beach or just going for a walk all favorite activities, all things that excite and him.

        Our therapist would have said give him less time in the activity or not to let him do the activity as soon as the verbal stim starts.

        That seems cruel and mean, I can’t fathom doing it!

        • No, I completely agree with you that it is cruel to take away the things he delights in and that will be viewed as a punishment and cause confusion, stress, and potentially bad thoughts about him self.

          This is a tricky one! There is some chance that the vocalizations will diminish over time, but you can’t count on that happening. And there needs to be a balance between letting him do what feels good and helping him learn how not to be frightening to other children.

          Does he respond well to games? My first thought is to create a game about making sounds together. The two of you could play with different sounds, including vocalizations similar to the happy ones he makes. When you make different sounds together, you could copy his sounds or encourage him to copy your sounds and you could name the different sounds. When you get to the sounds he makes that are scary, call it something like . . . “oh! That’s a HAPPY LOUD sound!”

          The idea here is to help him become more aware of the sounds he makes and what they mean. That’s just the starting point. The next thing would be that the next time he makes a loud happy sound and other children shrink away, you can say, “oh, sweetie, did the other children not like the happy loud sound?” Again, not criticizing him, just making him more aware of what is happening because he might not realize what is making the other children go away.

          Then, after he is becoming aware that the loud happy sound is what scares the children, you could work toward playing a vocalization game where you ask him, “can we make sounds like a dog?” “can we make the happy loud sound?” What would a happy quiet sound be?”

          Does he respond to these kinds of games or are they at a level he doesn’t access yet? If he does respond to this kind of interaction, the idea is to make him more aware of what he’s doing (while making sure he knows it’s okay and there is nothing wrong with him) and then making him aware of how people are responding to it, then finally helping him to develop tools to move toward different forms of expression. Make sure when you point out that the other children are afraid of the sound that you also let him know that it’s a beautiful sound to you. “I think it’s a great happy sound, but people like different things. You can always make the loud happy sound with me, son. Maybe other people would like other sounds better.”

          If this approach isn’t something that would click with him at the point where he is in his personal development right now, let me know and give me a better idea of where he’s at and we can brainstorm something else that might work better for what is accessible to him right now.

          • Posted by nomieb on January 15, 2014 at 11:17 am

            Oh my gosh you are amazing! All of these tips will help when he has a little better understanding of what we say. He has poor receptive skills at this point. He only understands simple one or two word phrases at this time.

            But he is so bright in other ways he has great problem solving skills and we discovered he was hyperlexic at about 18 months.

            I’m only sharing this with you because I actually had a psychologist tell me that my son was only as intelligent as he could understand the spoken word. He pretty much told me my son was an idiot based on his inability to understand a verbal IQ test .I was outraged of course. You could say the same thing about Helen Keller.

            Sorry to vent, its just I have read several stories about how intelligent but isolated and alone many autistic people feel. I determined not to let this happened to my child. As I said he is very sweet and although other children and parents don’t recognize his attempts, I see them.

            He already has an eye for the ladies, ( in that kindergarten way). He often follows a couple of the little blonde headed girls around the gymnastics studio, trying to get their attention.They don’t notice of course but I keep hoping his language will improve and I can help him learn to engage with other children.

            I can’t tell you how much I appreciate the time your taking to help me. I follow your blog often and ” No You Don’t,” changed my life, or perhaps my son’s.
            That is why getting a handle on this social piece is so important to me.

            My son will NEVER be subject to our school system. It is good and bad. He will not get the chance to interact with peers in a school setting because of their policies. In our school district, no parent is ever allowed to observe in the autism classroom despite the fact that it was originally built with an observation room. No parents are allowed to volunteer. Parents are not allowed to arrive more than five minutes before days end. If for any reason a child is to be picked up during the day, the school requires two weeks notice. This said, “BIG RED FLAG'” to me, so he will be home schooled.

            His emotional and social well being are completely up to me! I’m sorry I digress, I’m just so worried about getting this wrong.
            So long story, long, his receptive language is not there yet but I can start I with making sounds with him as you suggested, and trying to get him to imitate a few of mine.

            Your ideas made me think about how much he loves music. I’m not sure about how to shape that, maybe humming?

            I could start with sounds and try to evolve it. Should I go with humming or songs? He doesn’t talk much but he can sing a few songs. Do you think humming would be more comfortable for him? I’m asking because I think humming even for me actually gives a sensation that singing doesn’t if that makes sense? Does that sound like the right track?

            Thank you again, not only for answering me but for writing “No You Don’t!” I’m so sorry for what you went through, but you may have saved a new generation of kids from many horrors. You have my deepest gratitude and respect!

          • Oh, excellent! Yes, this is a long process and not something that can be gone through in a day. And as he grows, he will continue to develop and you will be able to connect with him in different ways. Always remember that we have a developmental delay but not a developmental halt — we change and grow over time and there is no way to predict how any Autistic person will develop because we (society, science, even the community of other Autistic people) don’t have enough information yet to be able to predict how any single individual will grow and change over time. It is kid of like planting seeds from unlabeled packages and watching the green shoots poke through the ground and eagerly waiting for time to reveal just what sort of flower is growing in your garden.

            Oh, I agree with you about the school’s policy being scary! I would be very nervous and suspicious of a policy like that, especially because I use a program that combs news stories for information about autism and I see the kinds of things that happen to autistic children in schools today. I used to think that things are different now (I had a lot of abuse from teachers, including the one who forced me to sit in a box every day and told the other children that I had to sit in that box away from everyone else because it made her sick to look at me.) but I see the same kinds of things and even worse all the time in news stories.

            I won’t say anything specific because it is so painful for me to think about little children being treated so unfairly and so abusively, but just know that you are making the right decision to not trust a school that will not allow transparency to the parents. This is still a world that can do a lot of harm to an Autistic child and when I think about the things from my childhood that hurt me (and some of them still hurt me today, the memories are so strong and bad) the number one thing I would wish for would be that I had been more protected. Sure, in some ways I think I was over-protected and then thrust out into the world with no preparation or understanding of even the most basic life skills. But I mean a different kind of protection — the kind of protection that doesn’t leave a child alone with a teacher who is not trustworthy, the kind of protection that believes the child and doesn’t use a diagnosis as a means of dismissing anything the child tries to communicate about his or her world and experiences. You are protecting your son and that is so important and will pay off so many times over and over when his flower has bloomed and he has grown into a healthy and happy adult who knows he is valuable and loved.

            The fact that you worry so much about getting it wrong says that you are doing it right.

            Yes, start with sounds. Enter his world. Start with playing with his sounds. Singing and humming is a great place to start! Begin by setting a stage of interaction where sounds are fun and playful and something you can sometimes do together.

            I also wanted to mention something about sensory input. The more peaceful you can make an environment, the more likely you are to have success with playing together. Our senses are fine-tuned and, more importantly, Autistic people don’t have the “filters” that other people have. I didn’t realize this when I was little, but I realize now that most people can hear or see or smell some things and sort of block out the other things. Their brains can decide what is important and focus on that in a way that erases the other things.

            We don’t have that filter and that’s why, for example, so many of us get upset if we have to wear socks with seams in the toes. That sensation irritates us and that feeling never goes away — you might put on clothes and then gradually stop being aware of them. But imagine if you tied a piece of rough twine tightly around your waist so that it rubbed on you and dug into you every time you moved. Would you eventually stop noticing it? Maybe . . . my guess is not. My guess is that your whole day would be focused on that painfully tight bit of twine and no matter what else you were doing, you were also thinking about how great it would be to go cut it off so you could relax.

            That is what unpleasant sounds and smells and feels and sights are like for us — like having that rough twine tied too tightly around you. We don’t have that thing called “the cocktail effect” where we can hear and understand one voice against a lot of other people talking. (I can’t even hear a lecture if the entire room is quiet but one person is unwrapping candy.) And we don’t have that thing called “olfactory fatigue” where a smell seems to go away after you’ve been in the room with it for ten or fifteen minutes.

            The point I’m getting at is that you want to learn to look at a room the way your son probably sees it, which means knowing that the sound of the refrigerator motor turning on or the furnace in the basement kicking on or a space heater running or the dripping of a faucet in the next room or any little noise like that can be enough to keep him from hearing you well. The same goes for bright lights or colors that we react badly to (that is different for each person. Mine is very bright yellow – I would have a hard time doing anything outside myself in a room that was painted bright yellow or with a therapist wearing a bright yellow shirt) and so on for all the senses. Our “sensors” are wide open with no filters and the reason we so often “go into our own little world” is because that is the only thing that turns off the external bombardment.

            Having said that, there are some of us who LOVE loud music or flashing lights or other highly stimulating things and that is because our senses can be under-responsive just as easily as being over-responsive. And one person can have both — say cringing away from any light higher than a 40 watt incandescent bulb but jumping up and down a lot to feel the hard impact of the floor or shouting a lot to feel the feedback of big sound in ears that don’t react the way everyone else’s do. It really isn’t a one-size-fits-all kind of thing, which is why Autistic people aren’t one-size-fits-all because each of us has a different “response portrait” to sensory stimulation.

            But knowing that, observe your son and what he does and doesn’t like and see if you can create an environment that doesn’t distract him too much for those times when you are seeking to enter his reality and play together. The more you can engineer the environment to match his sensory needs, the easier it will be for him to “meet” you.

            And, yes, humming and singing do give different sensations. Both can be very satisfying. When I got old enough to try alcohol and felt the way a little bit of it makes me feel kind of altered and space-y, I immediately recognized that feeling because singing and humming can give me that same good, space-y, altered feeling. I can’t say whether singing or humming would be better for him because of what I said above about each of us having different senses. Pretty much all Autistics have sensory differences from the rest of the population but we don’t have the same as each other. It’s a person-to-person kind of thing. So tune in to what he is really grooving with and follow his lead. The more you can let him show you where he wants to go with things, the more success both of you will have. That goes for playing and interacting and also for education.

            There is a type of education out there, popular with homeschoolers, called “unschooling” and it is “child led education.” Unschooling was not discovered with Autistic children specifically in mind, but it is a very good fit for the way we learn. I have a friend who unschools her Autistic son and they have ended up doing things as unusual (from a mainstream education perspective) as building a model of Abraham Lincoln’s funeral carriage and turning the yard into a bowling alley because she follows her son’s lead and lets him decide what he’s interested in and she mostly serves as a mentor and facilitator in his education process that he is developing on his own by being allowed to be curious about the world around him.

            He is much older than your son, so he is doing different things from what your son might choose to pursue, but the idea behind it is the same — your son knows what is interesting and what he is trying to discover about the world and you can do what you can to enter his reality as much as you are able and he will let you. Discover things together and make your teaching be something along the lines of helping him become more aware and helping him understand the questions he is asking the world and how to find the answers.

            So often, I notice that conventional therapists seem afraid to let Autistic children play even though that is the way that all children discover the world. Because of the diagnosis, everything about Autistic people gets pathologized and medicalized, even our joyful play. A perfect example is how many therapists will offer a communication device to a child and then take it away because the child “only stimmed on it” by finding a sound and making it over and over again or something similar. Yet when an infant babbles, we smile and cheer and babble back, rewarding that child for making seemingly random sounds over and over again because we know that babbling is a healthy and normal stage in the process of learning to speak. The Autistic child who “stims on” the communication device is just like the infant who is babbling — the child is discovering what the device can do and playing with the sounds and means of communication in preparation for producing sounds that are meaningful to others. Yet the therapist will say, “he is not ready for this. He cannot communicate. He is just playing with it and that is counter-productive to the therapeutic process. Take it away and maybe we can reintroduce it later.”

            How would people learn to speak if we gagged infants to silence their babbling because it was not yet meaningful?

            Anything a therapist wants to do, question what it would look like in a non-Autistic child. You said a therapist would want to take away the trampoline or show or whatever was making your son happy enough to make his loud sounds. Imagine if we lived in a society that forbade smiling and laughter and every time a child smiled while working a jigsaw puzzle or laughed while skipping rope an adult stepped in and took away the puzzle or the jumprope.

            This is an important tool for making sure you are only welcoming therapies that help your son. Every time someone wants to do a therapy that feels wrong to you, stop and imagine how it would be if that same kind of therapy were used on a non-autistic child. That will help you understand why the therapy feels wrong to you and will also help to suggest what kind of alternative therapy might be a better fit.

            Thank you for your compliments about my writing. The thought that I may be changing people’s lives for the better and helping children and their parents is what keeps me going. You can’t imagine how much I treasure hearing from people like you who have found happier, more peaceful, more nurturing ways to help their children grow and learn and show love. You are a very good and loving mother and not only are you protecting your child’s sense of self worth and helping him to grow up knowing he is good and loved but you are also helping me to feel more valuable and useful and happy when you tell me that something I’ve said has helped make your and his lives better. Thank you so much for that.

          • Posted by nomieb on January 19, 2014 at 7:09 pm

            I would have gotten back sooner but my little one has had a bad respiratory infection.
            I can honestly say you were born to be a writer! When I was a kid I read everything from Tolstoy to Stephen King. You words leap off the page! It surprises me you aren’t more famous. I stumbled upon, “Unstrange Minds,” by accident.
            You have Dickens quality with a modern voice. If you aren’t famous in your life time you should be.
            I have read many books written by autistics young and old. Your word are the first that really told me how to specifically help my child.
            For example, I had many young therapist in my home that worked with my child for several hours. They clearly had affection for my child and would often tell him to give them a hug.
            I immediately stopped this based on your words and the idea would have never occurred to me without your insight. My son should never be told to give a hug, ever.
            He can be asked and he can refuse. Which he often does even with me.
            I know he gets the concept of being able to refuse this because I often ask him for a kiss. He looks at me, smiles and walks off. Other times he will bend his cheek to be kiss or actually give me a smooch himself.
            Once I was able to explain to the therapist that a non-verbal child, who is overly compliant is the perfect victim for any predator, they were extremely supportive. In fact, a few of them shared the idea with other parents. So your words and thought reach and affect more lives than you know.
            Your wish for your childhood will be my gift to my son. He will never be left alone with a teacher or caregiver without supervision. Though costly, I have invested in nanny cams, and I never leave for more than a very short period of time. (Quite frankly we take a long time to get to know our babysitters and watch very carefully how our son reacts to them.
            My son’s therapy sessions occur in the main hub of our home. It is a dining room converted to a playroom/therapy room. It is visible from the living room and kitchen.If the therapist don’t love children they are asked to be replaced.
            I know the regional center and ABA provider thinks I’m a pain, but I know I’m doing the right thing. Our pediatrician, gastroenterologist and neurologist all say my son is the most happy patient they have.
            My son was not always this way but after reading your articles I examine deeply what could be making my son distressed or unhappy. He was removed from a center based program and now has therapy in our home under close supervision. He is now thriving!
            As far as other parents go, I think you would here from even more of them, if they didn’t mistakenly think like I did, you were probably to busy or otherwise engaged to answer letter from parents.
            I through a “Hail Mary,” simply because I agreed with the article but was stuck. At most I thought I would hear from other autistic adults who read your post and might share some insight.
            It never occurred to me you would answer and be so kind and helpful. You are truly a wonderful human being! Keep writing, keep inspiring, you truly are amazing. My wish for you is that you believe that.

          • Oh, I hope he’s doing better today. Poor sweety!

            Thank you so much for everything you say. I am so glad you did make that “Hail Mary throw” and contact me. You can’t even begin to know how happy it makes me to hear how well your son is doing. There are times when I feel like a failure because I haven’t been able to keep a job, I live on SSI, I have a really hard time making friends (I’m pretty good at it online, but in my offline life, it’s rare that I get to spend time around people) . . . but when I hear from you how well your son is doing and when you tell me that the improvement is because of the work I do, writing about autism, I know that I am not a failure at all. I am a success. And you are a success! And your son is a success! And I feel like doing a happy dance to celebrate!

  15. PS. He also makes a very loud verbal stim when he is eating something he loves! Apparently it is only a happy sound to me:(

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