Understanding my own stereotypic movement disorder

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Morning Zen Guest Blog Post ~ Anonymous

I’ve decided to openly discuss something that was for long time a very confusing and sensitive topic to me, but is now something I’ve become fascinated by and am beginning to understand much better. I hope that by writing this, I am able to help or reassure at least one person who is puzzled about their own – or their child’s – behaviour. In my opinion, there is way too little information on these behaviours that I will go on to explain. While research has shown SMD (Stereotypic Movement Disorder) to be surprisingly common in otherwise healthy children, unfortunately, the majority of people are unaware of its existence. This has led to many cases of misdiagnosis, upset and anxiety, over something that is actually a harmless behaviour.

I was aware of my hand-flapping habit from a young age, although I didn’t see anything wrong with it until I got a little older. For me, it was something I did when I became excited or engrossed in my imagination, such as creating things and making up stories in my head. I would go into a sort of ‘imaginary world’ where it was much easier to visualise things and daydream.

Despite being an otherwise very happy and healthy child, this unusual behaviour was pointed out by my family and friends at around the age of eight. I suddenly became very aware of how unusual I looked while in my little dream world. Stereotypies vary widely (which I will go on to explore below), but for me, it was a rapid flapping of my hands and fingers in front of my face, accompanied by a distorted facial expression (sucking in of the cheeks or movement of my face) and often a muttering to myself under my breath. From that description, it is easy to see how these complex movements would be worrying and upsetting to someone who did not understand them.

After my hand-flapping and facial movements had been pointed out, I was able to restrict it to private situations rather than displaying it when around others. Despite my ability to keep it ‘secret’, it was not something I was yet willing to stop altogether. After all, I enjoyed it. It helped with my creativity, and often gave me what felt like an adrenaline rush, leaving my heart racing in the end. Scientists have suggested that this is because children with stereotypies produce the intense physical movement to increase heart rate, allowing more blood to get to the brain and therefore allowing heightened senses and increased brain activity. Throughout my childhood, I would do this a few times a day in private, for periods varying from a few seconds to an hour. I was well aware that none of my friends did this, and as it was something I could ‘choose’ to do when I was alone, it felt like I had some sort of secret. Because of this, I spent a lot of my childhood feeling abnormal and different to other children. I was never short of love and support – in fact, I couldn’t have asked for a better family. This is the thing – there were so many opportunities where I could’ve opened up about it, yet for some reason I was too embarrassed to tell anyone.

I had just turned 13 when I finally started to wonder about whether this ‘secret’ was something I should be worrying about, and I began to feel strangely guilty about it. One night, I plucked up the courage to search the internet, to see if there was anyone else experiencing what I was. Bad move. As with any health-related internet searches, the results were misleading and made me even more anxious. Words such as ‘autism’ and ‘epilepsy’ were enough to scare me away and make me shut down my computer. At 13, shortly after this, I stopped my private imaginative play and hand-flapping. This was difficult, and I spent a good couple of years fighting the urge to do so and feeling worried about what was ‘wrong’ with me. Was I autistic? Was I crazy? Questions like this filled my head on a daily basis. Despite having an extremely loving and understanding network of friends and family, the severity of what I’d found out on the internet made me too ashamed to speak up about it. This became frightening and quite lonely. For years, I avoided searching it online or watching/reading anything ‘psychology’ related, in fear that I’d find out something about what was wrong with me. I wish I’d known that there was absolutely nothing to worry about.

It is only over the past couple of years that I’ve been able to start talking openly about the behaviours I experienced as a child, although I really wish I’d done it sooner. I have recently become aware of how harmless, common, yet frequently misunderstood, these behaviours are, and it has been liberating.

The main thing for me was discovering that although self-stimulating behaviours like these are common symptoms in children who are on the Autistic Spectrum, they are also prevalent in otherwise neuro-typical children. Unfortunately, the research on this is limited, and therefore parents are frequently misled to thinking these behaviours are an ‘indicator’ of autism or other conditions such Tourette’s, tic disorders or epilepsy.

The presence of stereotypies in otherwise neurologically healthy children are known as ‘Primary (Non-Autistic) Motor Stereotypies’, or Stereotypic Movement Disorder if the behaviour interferes with everyday life or is self-injurious. It is defined by John Hopkins Medicine as “rhythmic, repetitive, fixed, predictable, purposeful, but purposeless movements that occur in children who are otherwise developing normally.”. John Hopkins Medicine (A US Healthcare system) have divided the symptoms into three groups;

Although my own stereotypy came out when I was excited or engrossed in my imagination, children adopt these movements for a whole range of other reasons, such as fear, stress, for escapism, or to express their distress. It has been shown that the movements themselves are harmless (apart from the impact they may have if displayed in social situations), and do not indicate whether a child is ‘normal’ or is suffering from other psychological problems. Research in the US has suggested that complex motor stereotypies may be prevalent in as much as 3-4% of pre-schoolers, with the symptoms continuing into later childhood and even adulthood for some. With something that is apparently so common, I find it sad that there is little to no public awareness on the topic. There seems to be increasing amounts of research on this in the US, but in the UK there are only a couple of specialists. I have read posts from various UK parents who have been to GPs with no knowledge at all on complex motor stereotypies, and their children have either been misdiagnosed with autism or not taken seriously. It worries me that other children are experiencing this and may be feeling ashamed or confused like I was, or that some parents are much more worried about their children than they need to be.

Although the causes of Motor Stereotypies are not fully understood, The Ulster Medical Society has suggested that some children appear to have a genetic predisposition to it. Motor Stereotypies in children displaying no other psychological abnormalities are nothing to worry about. In fact, I have recently come across many posts of adult CMS sufferers who believe it is a gift, in some ways, allowing the imagination to reach higher levels. However, there are behavioural therapies available for children who are finding it is affecting their everyday life.

I have learned a few things from this, one of them being the danger of the internet in terms of misdiagnosis and health-related anxiety. Although extremely helpful, the Internet can be a scary place. I wish that I was able to speak up about this when I was younger, rather than letting the internet allow me to believe I was suffering from something much more serious, causing me to keep it to myself for many years and suffer in silence. My teenage magazines were always full of true-life stories about all sorts of social, emotional, love or health related issues, but nothing remotely like this. I took this as a false indicator that I was alone.

As I’ve grown older, I’ve realised that no one is normal. Everyone has their quirks, but they are ultimately what makes up a person. However strange or unusual you perceive your problem to be, it is highly likely that there are millions of people going through something similar. This applies not only to mental health related issues but also physical and emotional ones. No problem is too weird or strange to open up about!

This has also been a positive for me as I have turned my ‘fear’ of psychology into a fascination and a passion, and I will be going to University to study it as a Degree in September this year.

Sources:

*******

"Anonymous" is a nineteen-year-old student on a gap year, currently living at home in England. At the moment she works with a daycare service looking after preschoolers, but in September will be leaving to study at a university in England. In her free time she enjoys amateur dramatics and reading.

Comments

  1. Robert's avatar
    Robert
    | Permalink
    A really interesting and insightful article. I wonder how SMD differs from Maladaptive Daydreaming (see link below) or are the 2 interconnected?

    http://www.academia.edu/3342105/Maladaptive_Daydreaming_A_Qualitative_Inquiry
  2. Tim's avatar
    Tim
    | Permalink
    Thanks for the post. I’ve had this all my life and always thought of it as energy. I use strings, chains, kitchen towels or my fingers held in a certain way. I can disappear into my thoughts while doing this. I try my best to hide this but get caught now and then. At least now I don’t feel so strange about it. It’s a very powerful and creative thing. I do paint and sculpt and express creatively in art but stay somewhat quite about this and my secret. It’s kinda like self hypnosis I think but a gift regardless of what it may appear.
  3. Anon's avatar
    Anon
    | Permalink
    For real though, thank you. My parents thought it was the weirdest thing for years and constantly ridiculed me about it and shouted at me to stop these actions which really never helped my confidence or self esteem. So I became so embarrassed by it, that I only did it in private. So many google searches gave me false information and misdiagnosed me just like you were saying in your detailed post. I just want to say thank you, because I 100% know from your description of your symptoms that we share the same condition. I never knew what it was all these years, and I’m 22 now and I finally understand what my condition is, and it’s nice to know it’s hameless. I’m truly very appreciative for your detailed post.
  4. Anon's avatar
    Anon
    | Permalink
    Two words... THANK YOU. I have had this since I was a child, my family just ignored it but made sure I felt uncomfortable whilst doing it so I have learned to keep it to myself, I still do it to this day and I am 22! I have never had the courage to say this to anybody. It is so strange as I can control it when I am with people but not if I am alone. If I get a really good news I just have to go to the toilet and shake for a bit! It worries me as I also go cross-eyed which can sometimes leave me with a headache but the worst thing was thinking I was the only one. Thanks to you and the medhelp forum I can now give a name to my problem! and it feels so much better. Good for you for sharing this experience you truly are making a difference! Also well done on managing how to control it! Good luck and thank you x
  5. karn's avatar
    karn
    | Permalink
    thank you for this amazing article. It was so wonderful, reassuring and informative. my daughter has these movements and describes daydreaming. she often zones out when we are talking to her, when she is anxious or excited. She was diagnosed with ADD, and cannot focus in school. she zones out very often at school and is failing. she is bright and we have done neurological testing and they found maybe stereotypy movement disorder. she was put on ADD medicine but i don't know if it is helping or if she should be on it since she has stereotypy and that may be the reason she zones out and is not learning. has anyone else had this problem? she is 9 so she can't really explain or control what is happening. can anyone who is older give some pointers on how to have her avoid doing it in school? thank you so much.
  6. Mary J's avatar
    Mary J
    | Permalink
    I am so encouraged to read all of your comments and experiences of stereotypic movement disorder. As a pediatric Occupatiinal Therapist I have the opportunity to work with a diverse group of children and reading your insights is very valuable. I am wondering, what, if anything, seemed to help you manage your movements? I am interested in offering a rhythmic movement exercise group to children with this diagnosis. Do you think this would help? To focus on a rhythm/beat and express movement of choice? Does anyone have any experience with this? I would value your input:)
  7. Girl's avatar
    Girl
    | Permalink
    Im 17 and have done it all my life, when I was younger it was flapping my hands but now it is sort of curling my fingers vigorsly with my hands together and been ashamed of it, I learned when I went into secondary school that it was not socially acceptable and now I only do it sometimes and in private however when I'm upset or stressed I will do it for hours listening to music. I use the music to literally go into my own world with characters and people which are reoccurring. I usually am the base of my imaginations or people I know and it's not always pleasant for instance I will listen to sad music and imagine very traumatic things which will make me cry yet I'm choosing to do so maybe to let out inner emotion. I also can " release adrenaline" as I call it where I can close my eyes and create a falling tingling sensation in which I feel adrenaline rushing through my body and head in a similar way to my imagination and afterwards I feel light headed and spaced out I don't know if that's related in any way but I feel like I'm sharing everything.

    I have also noticed now that both my younger sister and father have the same 'tics' my dad rubs together his hands by his legs and pulls a face and his breathing is irregular, I noticed he does this only for a couple of seconds and raley but my sister is similar to me she shakes and curls her hands In front of her face and makes a strange breathing in noise with her cheeks sucked in. She like how I used to does it openly and regularly, she sits for hours at the computer watching videos and then using them as inspiration I guess. I have always been ashamed and although my family know we do t we don't talk about it, my mum who I haven't seen anything similar in used to reassure me it was nothing but I have always been so scared that it was a mental disorder and too scared to research it, I'm so happy that I cried when I read other people have gone through something similar but I'm also scared when autisim was mentioned, think I will research some more or speak to a doctor, anyway thanks for the vent.
  8. Angel's avatar
    Angel
    | Permalink
    I've had this all my life and only today, out of curiosity, I searched for it. As a child I played with Bionicles or Legos and imagined wars and civilization rise and fall, or just imagined an outcome to one of my problems. I still occasionally 'play' with an extra headphone cord I have laying around (I flap it around for a few seconds) but it's mostly to better understand or visualize a math or coding problems (I study computer engineering). Thank you for providing me with a name to my weird activity.
  9. Jesalyn's avatar
    Jesalyn
    | Permalink
    This is a great read! My daughter is 8 and has done this since she was very young. Her preschool teacher was convinced she was autistic so had a psychological evaluation done by a school psychologist who found my daughter to be "fine". We ended up taking her to her primary care and a neurologist, neither were worried about anything abnormal and the neurologist diagnosed stereotypies. I was told she would grow out of it so sometimes worry about her still doing it. This was reassuring. Thank you for opening up!
  10. Canoe's avatar
    Canoe
    | Permalink
    Well many doctors would diagnose you with autism high functioning or Tourette. Maybe labels are the problem
  11. Barry's avatar
    Barry
    | Permalink
    Thanks for the article. I'm 24 now and have been doing this almost everyday since I was a small child.

    It was a problem when I was young, particularly while daydreaming, playing computer games etc. It took me quite a few years to get control of it and stop myself doing it when other people were around. My father was strict on me and, while it was extremely frustrating at the time, I'm glad of it in hindsight.

    Nowadays I only do it while alone. If I'm in a room alone, on my computer, in the bathroom etc, I do it pretty regularly. It's rarely something I consciously decide to do - once I get into a private setting, it just happens. But because I've managed to stop myself doing it publicly, it doesn't bother me anymore. In fact, it's actually enjoyable in some weird, transcendental kind of way!

    I had a look around the internet a few years ago to try and self-diagnose but didn't get anywhere and just gave up thinking about it. Nobody outside of my parents and siblings know that I do it.

    But, just today, my mother walked into the room unexpectedly and caught me doing it. This hadn't happened in many years and so I had rarely even thought about the fact that I do it. But, after today's embarrassment, I decided to have a look and came across this article.

    SMD (of the complex variety) seems a better fit for my symptoms than maladaptive daydreaming. My hand flapping and weird facial contortions only occur while daydreaming in a room on my own... But I don't think I daydream more than the next guy, and it certainly doesn't "interfere with academic, interpersonal, or vocational functioning" (as seen on the maladaptive daydreaming Wikipedia page).

    Food for thought anyways. Thanks for the article and all the comments, it's nice to finally have some sort of diagnosis!
  12. Emma's avatar
    Emma
    | Permalink
    I'm a 17 year old girl and I have been searching for weeks for something to explain this! This absolutely nails it and I can't thank you enough for making me feel not crazy. I did this a lot as a kid, almost going into a trancelike state while doing the movements, which could be flapping an object, clenching my hands, or repeatedly crinkling a piece of paper. Sometimes I might be doing this for a minute or two, but sometimes it would last half an hour and it would seem like I couldn't stop. I would create characters, ponder things, or think of upcoming exciting events, and I would tend to do it most when I was excited, anxious, or just plain bored. I vaguely remember going to a specialist about it, because my parents, who called it "shaking" were understandably worried. Guess I was fine in the head in other regards because I never went back. As I got older however, doing it was only reserved for private and it was drilled into me that it was unacceptable social behavior. Again, understandably. When I did it in middle school on my own, it was always associated with a feeling of guilt afterwards. I would promise myself I would never do it again, but I could never keep that promise for more than a few days. It was almost like an addiction. I'm not sure when I stopped for good, but it was sometime in my early teens. I recently tried doing it, and I must have suppressed it because it has nowhere near the same effect. In high school I've dealt with a lot of anxiety and depressive episodes for different reasons, and because of that, psychology has become a fascination of mine. And yet, I have never ever been able to find anything to describe this condition even remotely. It's good to know I'm not alone, and I can rest easy, because, even though I don't do it anymore it was starting to bother me.
  13. Brendan's avatar
    Brendan
    | Permalink
    Sounds more like Maladaptive daydreaming (its a condition), I used to do this a ton when I was a kid and teenager and even still do it now (28 year old). Yea you learn pretty quick to do it in private when you dive into your own little world creating your own stories. Honestly it really does boast your creativity. But its not really Autism (or at least if it is it's on the lowest part of the spectrum), Maladaptive daydreamers only show the signs of hands movements/facial expressions when they are acting out their own imaginative stories in their heads. Apart from that (assuming they do it in private) no one in the real world or at work would ever know they had the condition. Usually people with Autism, Asperger, ADD, are easier to spot when you start socialize with them and notice their social mindset is unique from yours. Maladaptive daydreamers essentially choose when they want to let go and give in to the urges to dive into their inner world. Of course they might slip if they aren't as mindful to their surroundings, my sister (extremely nosy)used to walk in on me in my room during my daydreaming sessions and be like "seriously Brendan?" but I was pretty aware of what it looked like at that point and still didn't mind so usually would just respond with "Ah you got me this time sis". All it really meant to me was that I should be more aware of what can be considered private space.
  14. April's avatar
    April
    | Permalink
    Who are the uk specialists? I discovered the Hopkins website a couple of years ago and I cannot describe my relief at having a diagnosis for my daughter not that I believe in labels. My daughter was not even 2years of age when she started hand flapping and naturally I was concerned, convinced she had autistic traits of some description. She is 10 now, continues to hand flap although recognised at the age of 4, when she went to reception she was different so has never done it in public since. Exactly like you, she does it when excited and says it helps her concentrate and let's her imagination go wild! I have no desire to treat or cure this, she does it when she is happy! She is intelligent, socialable and very mature so I have absolutely no concerns. I am just curious and want to understand it more. I actively encourage her, her hand flapping involves flapping a straw except it has to be a certain thickness and bent at the right angle? Needless to say when we find the right straw we buy in bulk lol

    I would welcome the opportunity to talk to someone who understands, when I found the Hopkins website, I showed it to her and she was delighted to discover that there were lots of other 'normal' people who did similar things to her.
  15. Balkan's avatar
    Balkan
    | Permalink
    I am 40 years old and I had this my entire life but I did wanted to know what is it, or better to say I did not care. Although I've just started noticing my 2 year old daughter doing the same thing so I am worry if it is something else or just SMD? Can this become autism? If anyone knew I will love to know. For the people who had Maladaptive daydreaming, I must say that SMD or whatever it is, does not making problems in our life, we or just I have fool control when I will do it or how long I will do it. Sorry about bad English, I am from east Europe.
  16. Hells bells's avatar
    Hells bells
    | Permalink
    Thank you so much for this article...my 15 year old daughter has just been diagnosed with SMD after a lifetime of unexplained symptoms. However, we have been told that there is no treatment available for her...her symptoms are worsening with important educational times ahead...is she likely to 'grow' out of it? Can anyone else offer any hope with available treatments? Thank you
  17. Kay's avatar
    Kay
    | Permalink
    I am so glad you wrote this. My son is seven months old and has been diagnosed with this. It scared me so bad the first time he did it. He shakes his hands and rotates his ankles. Sometimes he will laugh or breathe fast. Just depends on how long it goes on. Glad to read something positive instead of hearing my child is developmentally behind. My neurologist is the one who said he has this. He was great. I had never heard of this until then.
  18. Lauren's avatar
    Lauren
    | Permalink
    Just wanted to thank everyone who shared their experience. After years of trying to figure out what's going on with me (and now my four-year-old as well), I finally did here for sure. Mine has been a struggle socially, and am trying my best to spare my son some of that struggle. The intense imaginary movements comments perfectly describe both of us (he's also always rocked back and forth; I've also always twisted a blanket between my fingers). It's so, so nice to feel like we're not alone and as messed up as I've felt at times. Thanks again. :)
  19. j's avatar
    j
    | Permalink
    Thank you so much for this! I am 32 years old and had this my entire life but never knew what it was. This whole story is me exactly and I could have written it myself. I've just started noticing my 3 year old daughter doing the same thing when we tell stories.
  20. Tim's avatar
    Tim
    | Permalink
    Teacher may be right - recent brain scans etc show deficiency in the dopamine reward system - stimulants help with that - don't let the doc give him ritalin - its neurotoxic - Vyanse (lisdexamhetamine) is a great drug - good for school
    not cheap - adderal tablets are second best

    I'd spend my $ on the personal trainer first - young kid - look for a trainer who works with Cerebral Palsy kids -

    strengthen his legs, and core body -- his brain will start doing "maintenance" on itself - plasticity.

    Serious it works backward exercise helps our brains - its IMPOSSIBLE for us to exercise on our own - or with you mom - nor dad nor any family - a Pro Trainer

    I gotta scoot - a year ago I thought I was alone - thank God I found you folks

    Thx


    t
  21. Tim's avatar
    Tim
    | Permalink
    I'm 54 years old. Still afraid to run - at school they mocked and laughed at me - at home - bizarre too -mymother and sisters bullied me - STOP RUNNING THAT WAY - RUN THE RIGHT WAY.

    maladaptive daydreaming - entire worlds in my head

    I had no idea until last year -

    I learn sloooow - until a Crisis then I learn at the Speed of Light - 10 x faster than the smartest person I've ever met. my memory is photographic '

    no crisis or bored - I learn Slow1 Village idiot
  22. Bat's avatar
    Bat
    | Permalink
    Oh man, me too! It's amazing that humans have these patterns- they may feel like the only one, but we're not really alone.

    PS. My habit's playing with a string and I didn't give it up.
  23. Tyler's mom's avatar
    Tyler's mom
    | Permalink
    Great article. For moms this is the best source of information , sometimes even better than doctors . Always great to hear form someone who deals with this and give sincere advise. My 9 year old has been doing hand flapping since he was almost 3 , along with what recently discover he has add. Eye opener your comment about the internet, since he is 9 and getting into internet; he is already trying to self diagnosed himself, he has mentioned that he thinks he is ADD and he is worried that he may be autistic. Thank you for your article.
  24. Anonymous's avatar
    Anonymous
    | Permalink
    Your story descibed my childhood almost to a T. Imaginative play, to shame (younger brother always pointed it out), to concern, to (regrettably) learning to supress it and abandoning my own inner world. Im in my 30s now and still every so often the odd urge sinks in, but it has been so supressed i couldnt go back even if i tried. My degree is in psych and part of the reason i chose it was because i wanted to know what this was, but never did learn until i read this. Thanka for letting me know i wasnt the only person who experienced this. For parents - in married, have two kids, a great job, and tons of loving family and friends. Dont worry, your kid is probably going to be just fine
  25. cain's avatar
    cain
    | Permalink
    My son has just been diagnosed with stereotypic movement disorder, before he was told he had a stutter, tic, ADHD or was just weird, But the doctor was fantastic and like you he would 'flap and roll his eyes' when excited or daydreaming. we were just worried he would be bullied at high school.
  26. AMANDA M Chitty's avatar
    AMANDA M Chitty
    | Permalink
    I have a son with complex motor stereotypies and more specifically, intense imagery movements. I believe Many people in the past have v een misdiagnosed with autism, and maldaptive daydreaming. Thank you for sharing ♡
  27. Marvin's avatar
    Marvin
    | Permalink
    Thanks for the information.My 5 yr old loves to flap and hop while play with his toys. We have been to trying to figure if it is something he can control at school as he has just started kindergarten and his teacher keeps recommending putting him on medicine for Adhd.
  28. Mary Alice Kiehl's avatar
    Mary Alice Kiehl
    | Permalink
    I was happy to find your post. I think that we under estimate what we ingest as infants and children. More like sponges, I feel. I, myself had certain behaviors which were not common, yet speak to me always. I like the Super-Power comment. You seem to take this all in stride. Good for you!!!
  29. Lizzie's avatar
    Lizzie
    | Permalink
    Actually this sounds a lot more like maladaptive daydreaming. Sorry to sound blunt but I thought I had SMD too until I discovered maladaptive daydreaming. I really think you should look into it. Good luck!
  30. Kruser's avatar
    Kruser
    | Permalink
    Our 6YO son has CMS and was diagnosed by a great pediatric neurologist. Ninety percent of the visit was counseling us on how to stop worrying and leave him alone. :)
    I am really curious about what he is experiencing when he starts stimming and rocking, but he is not very forthcoming as I think he views my questions as either an invasion of his privacy or a demand for an explanation. From what I've read, people talk about having very intense, deep daydreams. It sounds kind of like a super-power IMO.
  31. Karen's avatar
    Karen
    | Permalink
    Great article! My otherwise healthy 9 yr old son has this! It is hard to find much information on it on the Internet!
  32. daydreamer's avatar
    daydreamer
    | Permalink
    Thank you for the article! I've had this growing up, and it's still my little secret. There's something else you might want to look up- 'Maladaptive daydreaming'. It sounds a lot like this, to me.
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