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;

• Common (habits such as thumb sucking, nail/lip biting, hair twirling, body rocking, self-biting, teeth clenching/grinding and head banging)
• Head Banging (nodding the head from side to side, up and down, or shoulder to shoulder)
• Complex Motor (hand/arm flapping or waving, wiggling fingers in front of the face, facial tics, rotating or opening and closing the hands, and finger wiggling)

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.

• http://motorstereotypiesandyou.org
• http://m.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pediatric-neurology/conditions/motor-stereotypies/
• http://www.ums.ac.uk/umj083/083%281%29022.pdf
• http://www.sensory-processing-disorder.com/hand-flapping.html

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“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.