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I have so many memories; things just get etched in my mind. The scene, the sounds, the smells... they are all there in sometimes disturbing clarity. Perhaps the reason why my first memory remains particularly vivid was because it was my first taste of terror. I remember waking up to the vision of shafts of (what would have been) afternoon sunlight playing behind the drawn, blue and white flowery curtains in my room. From between the bars of my cot, my gaze flitted around the dappled-darkened room - until my eyes came to rest on the lower left corner of the window recess where the curtain was gently flapping in the breeze. There in that corner was a menacing, amorphous "dark thing"; something I had no words to describe being of such a tender age. I initially froze in horror, but, as the adrenaline surged through me and came to a crescendo in my tiny body, so too did my screams... The "dark thing" must have merely been an innocent patch of shadow, but for some reason it terrified me. So much so, that I was to give such things a name: "boout". I have written it phonetically; being so young I had no alphabetical or linguistic capability. Perhaps "boout" is an example of what psychologists refer to as "pre-speech" language? When I was in my early "thirties", that episode came up in my psychotherapy. I later asked my mother and father whether they could recall any incident, from the days I was in my cot, when I became hysterical - more so than usual baby crying behaviour. They reported that there had been several such incidents but, after some thought, they recalled one that had occurred when I was approximately eighteen-months old when I had become so hysterical that my father had to stop my mother from shaking me - because she was so scared about me being so scared at apparently nothing! I wonder if that mapped onto the "boout" incident? Perhaps the very reason I remember it so clearly was because my poor mother's terrified reaction to my panic amplified the memory in my mind... During my toddler years, and thereafter, an increasing number of other objects became targets for my fear. All such things were labelled "boouts" - I suppose that word meant anything that felt threatening to me - until I was later able to put the following names to them:
...and a host of other bizarre things that, upon encountering them, would make me either freeze in panicked silence, or induce panicky vocalisations to a confused, sometimes incredulous, sometimes very unkind audience. These obsessions continued throughout my childhood. As I got older, I developed an increasing ability to talk myself through and out of the fears, partly because I began to realise that my fears weren't "normal" and, when I was about 8-10 years, that knowledge began to scare me more than the objects of my fears! In adulthood, I gained an extra set of tools to cope with fears and phobias from having spent two years doing once-weekly cognitive behavioural therapy (more on that later). It is interesting that, like many Aspie adults, the things in the list still affect me, but I've just developed ways to conceal or cope with my reactions to them Such obsessional and apparently groundless fears are very common in children with Asperger's Syndrome and the early self-awareness is common in those with even higher IQ (Asperger's children tend to have average or above average intelligence). The thing about these children (and certainly from my perspective) is that the usual forms of reassurance in general don't work! Unlike NT children, Aspie children are not born with a nascent ability to trust their parents or other significant adults - they are only able to trust themselves. It is a little more complicated than that though, because there are so many forms of trust. Aspie children can in fact be far more gullible than NT children, and gullibility is itself a form of trust. However, if an Aspie child has decided it doesn't like something, it just doesn't! And all hell will freeze over before they listen to any adult's reassurances I will look at how those fears in that list affected me a little later, but before I do that, I need to tell you about sleep! As my "boout" incident indicates, I was highly self-aware from a young age and was unusually (so I am told) mentally active. I'd be put to bed at what is deemed a "normal" time for a child of my age but I just could not fall to sleep until much later in the evening. Whilst awake and just lying in my bed, my mind used to run riot with fears and worries - my demons - where I'd be obsessed that for example, the boiler was going to swell up and engulf me, and other things I relate in my list earlier. I also used to suffer from night-terrors and strange delerium fits where the walls and ceiling would really look as if they were closing in on me! Sleep-walking was another problem - Mum sometimes tells of times I freaked her out by turning up in her bedroom uttering some incomprehensible babble! The worst childhood example of this was when I woke up to find myself lying on a bench outside in the garden! I never told them that one until years later! Luckily for my husband, I don't suffer from sleepwalking now. I just lay in my bed and have occasional bouts of sleep-talking and sleep-fighting, the latter unsurprisingly resulting in my poor husband having to sleep in the spare room! I also suffered the most amazingly vivid dreams and frequently nightmares - so vivid and colourful that I'd have difficulty judging what was and wasn't reality when I woke up from them, which is a very destabilising and frightening feeling. I still have problems with this in adulthood and sometimes have a hell of a job to get with it in the morning as a result! The worst kind of dreams in my childhood were repetitive dreams and visions - here are just three of the scariest examples:
The other problem was that when I did manage to sleep, I wet the bed - nearly every night right up until I was fourteen years old! My mother's disapproval of the bed-wetting (can you blame her - imagine having to wash and iron bedlinen every day!) meant that as I got older, I'd often lie in my own damp bed from the previous night, desperately trying to lie on my side and avoid the damp bits. So, I used to have to secretly deal with suffering nappy rash! From what I have gathered, all the above things can be suffered by children with Asperger's Syndrome. I am not sure if there is any way of dealing with it but I am sure that these days early diagnosis would help! There are perhaps drugs that such children could take to help keep these demons at bay. Bed-wetting tends to be associated with neurotic, worried children and is also common among children with Asperger's and effects many NT children too. Unfortunately, if the child doesn't have some form of counselling or treatment, a vicious cycle can ensue: worrying about bedwetting leads to more bedwetting, which leads to more worrying, and so on. Some of the therapies that I received (there was little knowlege in those days when bedwetting was such a taboo subject) were quite arcane and victorian, and of course in those days aimed to treat the symptoms (the bedwetting) and not the cause (underlying neuroses)! The worst I have encountered was a special matress cover that, upon sensing urine (or any liquid as I amusingly once found out), would trigger an alarm to sound from a box conveniently placed right by the side of my earhole, it seemed! That alarm was bedlam (pardon the pun). In that context, remember that Asperger's people tend to be unusually sensitive to loud noises, light, colours, smells, etc., - their senses are generally far more finely tuned than those of NTs. For me, that alarm going off felt like an electric shock - it actually hurt! This was probably made worse by the fact that when it went off it was usually to awake me from a deep slumber, which of course was when I used to wet the bed - probably as a result of sleep depravation catching up on me from previous nights not sleeping properly!
Please don't subject your bed-wetting child to such a device! The only way to deal with bed-wetting is to deal with the cause not the symptoms. Early diagnoses of whatever kind, be it autism, OCD; whatever, will help with planning a suitable course of therapy, which will also help with the bed-wetting. Whatever the diagnosis, and even in the absence of one, it is essential that the family of such a child never, ever get cross (however inconvenient the bed-wetting is). If the parents feel angry, they should seek counselling or talk to friends in order to offload the stress caused by the problem to someone else. They should remember that the bed-wetting is actually the child's problem, not theirs - they just suffer the washing - and that bed-wetting is in fact very disburbing for the child. The child's life will become even worse as they get older and the problems of staying at other people's houses and teasing begin to raise their heads. It is significant to note that the type of personality of children that appear to suffer bed-wetting (from anecdotal evidence of NT children I have known who suffer the condition) seems to indicate they are the type that "bottle things up" and are prone to depression. So you may not even know how distraut your child is about their problem - they just won't appear to show it - perhaps until later on when that, and depression, get too much to manage interenally and the young adult decides to attempt suicide. So beware! Given all my problems with sleep, it is hardly surprising that I tried not to do it (until my body finally forced me to do so)! Those sleepless evenings stuck in my bedroom after having had a fight to be put there in the first place were initially boredom hell for me. And boredom is always what seemed - and still seems - to unleash the demons of my mind to manifest in the terrifying ways I describe earlier. So I becamse quite adept at finding ways to occupy myself to the point where those evenings became rather fun and I'd prefer staying in my bedroom to doing anything much else during the daytimes! Being unable to sleep when you are in a cot is awful - the equivalent of being imprisoned behind bars. Though apparently I was mostly a happy baby from all accounts: quite content to be left on my own, particularly in my baby-bouncer, I also had the demons I mention - and some others. I don't exactly remember being bored at that time (I was too young probably) but I can only assume that it was boredom that lead me to begin revealing a peculiar artistic (or autistic?) talent - that of painting the wall next to my cot with faeces from my nappy. Lovely! Imagine what a gross nightmare that was for my parents! Luckily I don't remember doing this - it just gets embarassing when parents (thinking they are sharing fond and amusing memories of their child's development!) recount such tales to other people! My parents are sweet now and never mention it since they know I am sensitive about it. However, I have given up being too sensitive about it because of my Asperger's Syndrome diagnosis. I am not saying that all Aspies wipe their sh** on their bedroom walls - they don't - it's just another symptom that may occur within a long and bizarre list of other behavioural problems that can lead to such a diagnosis being made! When I was older and no longer trapped in a cot, boredom was a bit easier to quell. I became very good at entertaining myself in silent and creative ways, for the slightest noise and my parents would have come running to order me back into bed. Initially, some of the ways in which I would qwell my boredom caused great inconvenience for my family. Sometime during the first five years of my life, I went through a phase of wreaking revenge on one of my fears: "bitty buttons" (as I called them). Actually, I am not sure of the real reason why I did what I am about to explain, but the idea of wreaking revenge on buttons does sound funny! I'd sneak downstairs and purloin the scissors, return upstairs with these contraband trophies, and, having previously located all my button-infested clothes, snip each and every horrid, solid button off them. You can imagine this not only meant rather a lot of unwearable clothes, but also a lot of needlework for my already harrassed mother or grandmother! Soon, my scissors obsession lead me to progress from button removal to showing early signs of being a hairdresser - cutting the hair off anything I could: teddybears, my rocking horse - even me! One such incident occurred when Mum and Dad had gone out one evening, leaving an unsuspecting baby-sitter downstairs. I was around five or so years old and couldn't sleep as usual, so I sneaked down to get the scissors and, sitting on the red-pile carpet on the landing, proceeded to give the rather large, bright-orange teddybear of my brother's a "Grade 1" haircut! This task was nearly complete by the time my poor parents returned home to their nearly-ruined carpet. Orange teddybear fur mingled with red carpet - mmmmhhh. In those pre-Dyson days, they never did fully remove the fur... Earlier, I referred to scissors being "contraband". This is because sometime during all this I was, hardly surprisingly, banned from using them! However, banning things didn't make an iota of difference to me - like any Aspie child, if I'd set my mind on doing something, nothing would ever stand in my way: I had decided scissors were fun and that was that! In fact, that's not quite the full story and this is where an Aspie child will differ markedly from an NT child in their thinking. Scissors weren't exactly fun for me - the concept of fun is really only applicable to an NT child. It was more like I became obsessed with the need to use the scissors from time to time: buttons and teddybears just made obvious targets! However, there is an odd kind of smug satisfaction - really a kind of satiated feeling - that goes with fulfilling such a need, but I wouldn't describe it as the feeling of having had "fun". In addition, with regards to the example of buttons that had to be cut off - it may be significant that an NT child with some kind of obsessional disorder but who is not autistic, would probably also cut the buttons off other family member's clothing. However, it would never occur to an Aspie child to do this - their only focus is on their own things, things they have "decided" are their own (the scissors and my brother's teddybear in my case) - it is like they are blind to anything else. So I never touched anyone else's clothing - not even Mum's clothes my wardrobe that I mention below! I am sure Mum would have been relieved about this at least - I'll have to tell her about that one! Probably the last straw in the scissors phase occurred on a humid night in July: the night before my sixth birthday. Laying awake in my usual insommniac state lead me to conclude that a bit of "scissor-therapy" was called for. So, having stolen the scissors again, I spent an entertaining evening cutting off all my long hair and chucking it out of the window! I never forget the look of horror on my mother's face when, upon pulling back the curtains in my room the next morning, she saw my head with its weird selection of shaven bits and longer tufty bits! As for me, I had no idea what all the fuss was about! I'd simply got hot and bored and was fed up with my hair, so I cut it. Next! I figured that it was my hair so I could do what I liked with it! So, after an extreme amount of telling off and tantrums, I was mother-handled to the hairdressers to have a proper job done on it so that it was evenly short all over! The scissors were removed from any obvious hiding places after that! Of course the adults didn't agree that "it was my hair so I could do what I liked with it"! That situation is another good example of Aspie thinking - or not thinking in fact! It simply hadn't occurred to me that the adults would disapprove of my actions, partly because it was my hair so I couldn't see anything wrong with cutting it myself, but also because Aspies do not have the ability to empathise or forward think in an empathetical way - to get inside other people's heads to predict possible reactions. Also, my autistic obsession with using the scissors was so strong that, even if it had occurred to me I'd get told off, that wouldn't have stopped me! Alongside my penchant for scissors, other entertainments developed. I had seen Mum visit part of the wardrobe in my room a few times. Being so young, my clothes were kept in the smaller part of the wardrobe and on shelves so I was intrigued to know what she was doing! So one night, when I was about four years, maybee less, I decided to investigate - perhaps hoping the wardrobe would be the gateway to Narnia (I was very keen on those stories even though I generally didn't like fiction). Well, inside the wardrobe there were no fur coats; instead there were some very glamorous evening dresses. For a time these provided great amusement, until I fell over with a clomp one evening when I tried to make my tiny body walk in one of them - kind of like a sack race but probably even less elegant! I got into a heap of trouble when Mum rushed upstairs to find me having torn the dress! At about the same time, I'd been investigating in mum's bathroom when she was downstairs and discovered her lipstick and eyeshadow. I assume it was a latent scientific tendency that gave me the inclination to take "samples" from them! Whatever; I hacked my samples from the end of the lipsticks and dug them out of the eyeshadow pallettes and then neatly arranged these bits of gunk and powder on my glass-topped dressing table where, I have to say, they did look rather pretty! That was just it: it never occurred to me to put them on myself other than on my hands and arms. As with the hair and other incidents, it also never occurred to me I'd be told off - I'd kind of "made" mum's makeup mine. I didn't like the tubes and bottles, only the look of the lipstick and power with their sparkly, shimmmery bits! Poor Mum was not best pleased, particularly when she went to use her lipsticks! That whole thing is again, very Aspie - just liking the look of something even if you are not at all bothered as to what it is used for or how it is supposed to be kept - or who owns it! The other Aspie thing is that tendency to "hoard" - the little samples carefully placed in particular positions all over my dressing table! After that fated dabble in fashion, I turned my attentions back to the wardrobe. At the back, I found a box lined with some yellowed newspaper that had funny symbols on it. I now believe it must have been Chinese newspaper; perhaps originally used to line a take-away box because we often ate Chinese food. In that box was stored an old "Petit" typewriter and some sheaves of paper. Wow! Did that give me hours of fun?! The symbols fascinated me, as did the typewriter which I gradually learnt to use. I remember spending ages trying to work out a way to get the typewriter to produce the chinese symbols (which I had decided were prettier than English characters!) and also attempt to figure out how those symbols related to the "quertyuop" layout of the keyboard. In doing these things, I was obviously undertaking a sysiphean task and was glad that my intelligence enabled me to realise the futility of these experiments relatively early on! Luckily, my parents never seemed to hear the "clank" of the typewriter keys being pressed, though I do remember realising I needed to do it quietly, sometimes ending up with faint letters on the feint paper as I typed whatever came into my head! Then disaster struck: I'd run out of paper and furtive investigations of the rest of the house uncovered no suitable paper either. My drawing paper wouldn't fit - I jammed up the typewriter trying - so that was the end of that. It didn't occur to me to ask my parents for some more and they'd probably have been cross if they'd found out why I needed it anyway! That it didn't occur to me to ask my parents for help is another fundamental sign of Asperger's Syndrome. Such children are usually highly self-sufficient in their pursuits and normally won't communicate about what they are up to, let alone ask for help. I had learned to read earlier than usual and, indeed, found reading easier than writing, which I found physically rather difficult as my hands didn't seem to do what I wanted them to! So, after I had used up the anti-boredom possibilities offered by the wardrobe, my attention turned to books. There were never any interesting books in the house; only novels. However, I had always been taken to jumble sales and fetes and began to amass quite a collection (via my indulgant gran who it was that primarily that used to take me to such places) of the most amazing interesting books I had ever seen. The "Observer's" series were my particular favourites and I accumulated books on all sorts of subjects from geology, seashells, glass making, horses, farm animals, stamps, flags, butterflies - you name it! I'd spend hours in my bedroom copying the diagrams and photos and generally "studying" whichever particular subject had taken my fancy at the time. My chosen subjects went in distinct phases. My first interest was probably geology and I had managed to collect a variety of books on the subject. I used to fanatically copy-draw the rocks into my notebook and took notes on them! The typewriter was also put into use since I still had paper at this time! Rocks got me interested in chemistry (except I didn't know what that was then!) because the books seemed to say that the rocks were made of loads of funny looking letters with subscript numbers! This intrigued me no end, but I couldn't find any more information out at that age, and when I did get the nerve to ask people, nobody knew what they meant either. Boy, do I wish the Internet had been around then - the ultimate Aspie tool! Anyway, some kindly local schoolteachers indulged this interest by giving me various rocks and minerals which I stashed with glee in a supposedly secret part of my bedroom cupboard. I would visit these kindly people's house on a Saturday morning, to glean information from them and see if I could obtain more rocks! I was obsessed by the idea of having a stone polisher, but couldn't afford one - how could I? I was only about four to five years old! When I had run out of resources on geology, I moved onto flags for a while, then stamps (I built up a really good stamp collection, helped by "stamp club" at my first school, and the fact my Dad travelled a great deal, so was able to get me stamps, and got sent lots of foreign post too!). My favourite stamps were always those from various African countries - colourful and with pictures of animals on them! Other interests in no particular order that came and went over time were sea-shells, cactii, insect-eating plants, calligraphy, collecting coins, collecting jewellery, collecting newspaper clippings - anything I could lay my hands on - of anything to do with horses, human anatomy - particularly the eye, breeds of dogs, horses and cattle. Those are the ones I remember, anyway! When I was studying, I hated being interrupted, even for food, and would get really angry with constant interruptions of the "come on, I have called you twice now, will you please come downstairs and have your supper" variety! If I had decided that I wanted to get on with my studies, I would throw a tantrum if I was told we were to do something else. I was also dogged in my attention to detail in my studes. One of the most "geekily sad" things I remember was giving lectures about subjects in which I was interested at the time, to an imaginary audience in my bedroom! I'd decided that I wanted to be a scientist from a young age - Mum reckons I was only about 6 when she first caught me dong this - as I recall I was giving a lecture on the nature of stalacmites and stalactites! It must have been an hilarious sight - the "little professor"! After that, I learnt to speak sotto-voché so as to retain my privacy. As I got older, I discovered our local library. This opened unbelievable doors for my studies, thanks to a kind librarian who would order all sorts of strange titles for me such as large veterinary science manuals that I would never be able to afford to buy myself. I'd cycle down there on a Saturday while other kids were out playing with their peers and get what I needed (often because of having seen a book mentioned in a cross-reference in another book I had been reading - that's how I learnt to progress my studies). However, I was always rather disorganised with time, so often got fined for forgetting to take the books back after the three week period if the kind librarian wasn't there when I returned them! I used the label "Little Professor" earlier above. Interestingly, this term is often used to describe something peculiar to many children with Asperger's Syndrome. There are two aspects to this "Little Professor" Syndrome. The first is that Asperger's children are cited by various sources to show an average or early developmental onset of reading and writing skills, as opposed to children with other kinds of autism who tend to show delayed development in these areas. Indeed, the condition known as "hyperlexia" is often co-morbid with Asperger's Syndrome. The basic characteristic of hyperlexia is that the child will have the ability to read words far above what would be expected at their age, often accompanied by an intense fascination with words, and sometimes numbers. It is a condition in its own right (and I discuss it further in the symptoms pages on this site). I certainly showed signs of hyperlexia: I had a fascination with patterns in numbers - I used to draw those tables that can depict number patterns, and loved number plates and telephone numbers. However, I was particularly fascinated by words: I would pour through dictionaries (when I could get my hands on one) and my language tended to be littered with words of an often technical nature (e.g. depending on my special interest of the time) that even adults couldn't undertand! Obviously, in reading "adult" books in my studies, I would often encounter words that I couldn't understand and that would cause me great frustration - especially becaue there didn't appear to be a dictionary in the house. There is a funny example of the problems I had coping with decoding some of these words. When I got into my "wanting to be a vet" phase, I began reading James Herriot books - adult books about a vet and I was reading these when I was aged about six or seven! Anyway, in one of the front pages of one of the books was the author's name but, underneath that, there appeared the word "pseudonym". I had no idea what this meant! So, uncharacteristicly for me, I asked my Mum, but my pronunciation was wrong and I instead asked "Mum, what is a peusadonim?". Obviously this was met with much mirth when I showed them the word in the book! I learned at least, but felt silly - and I hated feeling silly! So hyperlexia means such children find it easy to read from a young age. It therefore means they can tend to study advanced stuff from a young age. And this leads me to the second aspect of the "Little Professor" syndrome. People with Asperger's Syndrome tend to be more drawn to objects than to people (this is a classic sign of autism in general) and Aspies are particularly drawn to categories of things, termed "special interests" in autism speak. My intersts I mentioned earlier are good examples of special interests that are commonly observed in Aspie children, along with trains and planes for boys it seems. Such children may stick to one particular special interest for a while, and then move onto another in an almost hungry manner. Or they may have one enduring special interest (veterinary science and horses in my case) whilst dabbling in other special interests alongside, during their life. It is important to note that whilst NT children also have their hobbies, there is a marked degree of difference in how they attend to their hobbies compared to Aspie children. NT children will not tend to study a hobby in such intense detail - indeed when they are younger, they won't really "study" it at all. The NT child will also tend to be easily deflected from it onto either something else, or something social - NT children will tend to want to play with other children and this will tend to take precedance over their interest. However, a child with Asperger's Syndrome is the complete opposite. They really "study" their subject, and in such an intense fashion that they won't hear someone speaking to them! Woebetide trying to dissuade an Aspie from his/her special interest - if you try to stop them, serious tantrums may result! The word "perseveration" is used in autism circles to mean this type of persistant inclination. This is exactly what I was like. Obviously this capacity for studying means that even very young Asperger's children can become abnormally proficient in particular subject - hence the term "Little Professor". It is worth noting at this stage that a younger Aspie, unlike a child with "classic" autism, will sometimes try to get other children to play with them, but will expect the other children to join in with their special interest. Of course, being social animals, NT children will often oblige and join in! However, they will tend to become bored and move onto something else, leaving the Aspie child "spitting the dummy" and "throwing a hissy fit" in upset, and out of confusion as to what they have done wrong! An Aspie's special interest is their life and will tend to take priority over socialising and play, especially as they get older and realise other people aren't really interested to go into the same depth they do! A good example of the above was one of my special interests - codes. I got into this at about age seven after reading a book on pig-pen, morse, radio phonetic code and other similar codes. So I began playing with simple substitution codes, some of them with rather detailed and bizarre symbols! Somehow, some of the children at my first school got into this with me too and we would have great fun flicking notes around the classroom. For a while, they saw me as "cool". Somehow this got to the stage of being competitive - to the point where opposing factors of children would have their own code, so silly notes like "{name} has a fat bum" or something, would get flicked around the classroom! Obviuosly the aim of the opposing teams was to decipher each other's codes so the notes could be read. Unfortunately, my tenacity meant that this got a little out of hand - to the point where I ended up stealing one of the girl's little money boxes, in which she kept the code template, and took it home and picked the lock. The box got damaged in the process and I got into a lot of trouble with the girl and her parents, not surprisingly. This is an example of how things always seemed to get out of hand with me. The NT children knew when to stop, but I never did. I carried on trying to persuade them to play with codes, but by that time they had got bored - and freaked out by my obsessiveness. So I went "underground" and persued the interest myself in the privacy of my bedroom. Interestingly, when I was about age ten I began writing a diary and actually wrote it in code right up until I was about fourteen! The cipher was a bit more complicated by then, and took me a while to decode it when I was an adult in order to read the old dusty diaries as a result! I mentioned earlier that it rarely occurs to an Aspie child to ask an adult for help in their studies, or anything else for that matter. When they are younger - it just doesn't occur to the child to do so! However, as such children get older and are increasingly immersed in an NT world that they don't understand, and where the people don't seem to make an effort to understand them, Aspie children tend to become increasingly secretive about what they are up to, and appear therefore increasingly insular - on purpose! Why? Because an Aspie's little world of collections of "things" and "special interests" is the only place they feel safe in an NT world where they suffer increasing confusion and meet with increasing disapproval from those that deem their apparently obsessive world to be strange. Is it surprising then, that no way will such a child willingly communicate with NTs as to what they are up to? For to let an NT into an Aspie child's private world may result in it being damaged irrevocably forever... Apart from my books, my other precious possession was my hoard of "sparkly things" - jewellery, strange metallic objects, crystals and rocks (the latter being part of an early interest in geology and the elements) many of which were also amassed from jumble sales and fetes, or from kind adults. My mother recalls that even when I was a toddler, if she had visitors they'd say words to the effect of "what a lovely child" because I'd be keen to sit on their laps; not out of affection, but merely out of fascination at their jewellery! Mum said I appeared completely disinterested in the person and would simply say "sparkly things, sparkly things" in an excitable and rather repetitive fashion. In the story above about wanting to sit on adult's laps to play with their jewellery, I said that I didn't appear interested in the person. This is a classic early sign of autism - being fixated on objects in preference to people. In addition, the "sparkly things" or "boout" has more than one association with Asperger's Syndrome. Firstly, the use of such phrases at all - Aspie children often invent their own phrases for things! Secondly, repetitive use of certain phrases, e.g. "sparky things, sparkly things" (and it would have been repeated more than that) is an example of a symptom that is common in all forms of autism. It is called "Echolalia", which is basically the repeated utterance of a phrase or word, either made up, or from another source such as as the telly or something someone has said in a certain manner. It often happens when an autistic child gets upset or over-excited. As part of echolalia often goes mimicry - Asperger's children are often excellent mimics of sound! This propensity can be a route to making such children popular for a while - often unwittingly - because such mimicry can make NT people laugh like hell when coupled with a well-known phrase, such as a TV advert! However, unlike NT children who pick up the social cues, Aspie children often don't know when to stop - upon receiving a good response from something they have said, they will often repeat it - echolalia fashion - until they either get told off, or everyone goes away... To this day, I will, when in a child-like state (e.g. half asleep) come out with phrases like "need warm thing" - which means I need the duvet over me more! The strangest one was probably my half-asleep utterance on discovering there'd been a power cut: "oh dear, someone has stolen all the electrons". That one still causes my friends amusement! For me, echolalia also manifested itself - and often still does - by my repeating chunks of things that I have found funny or interesting on the TV. This can tend to drive people mad, whilst my sometimes manic laughter drifts around the house. "Get Busy with the Fizzy. Soda Stream. That's Fizzy" was one of my favourites as a child - and I used to love imitating the ridiculous-sounding voice that said those words in the advert! I remember only too well oft receiving the words "come on now, don't flogg a dead horse"! All my "precious things" as I called them (I hadn't even read Lord of the Rings at that time!): my books, rocking horse, hoards of jewellery, rocks and other artifacts were guarded with obsessive care. If someone was staying, I'd hide my precious things under my matress and I would never, ever let anyone see them. To this day, I still possess some of the books with their dog-eared pages and childishly scribbled notes in the margins. I also still have all of my crystal and rocks. Indeed, it has grown into a substantial collection since I began earning my own money and was then able to buy such things (indeed, some rather rare pieces) myself. My husband and friends joke about our house: "we don't have ornaments, we have rocks"; indeed, they cover most of the shelves in our house (yes, my husband is very tolerant!). From as young as I can remember, I was fascinated by anything "sparkly" (this also meant unusually patterned glassware and interesting or colourful lighting, e.g. christmas lights, and fire). I would go into quite a dream state just staring at such things and letting the miriad sparkly colours play over my senses. I still do to this day. My husband is very tolerant of my liking for jewellery, and I can afford nicer pieces now than the cheap jumble-sale stuff I bought with my pocket-money (or from my indulgent gran) as a child! I can't pass a jewellery shop without wanting to ogle the pieces. I am not even intereteste in buying a lot of the time - I just let my senses run wild amidst all the shinyness. Passing a light shop is just the same! When I go into a restaurant and there is intersting decor: mirrors, lights, stained glass windows, etc., I go into such a trance at it all, more than once I have been bought back into reality with a thump by someone having to almost shout into my face to get my attention! The liking for "sparkly things" is very Aspie. It is kind of what is called "stimming&Quot; in autistic speak. Stimming is the repetitive need to do something in connection with the senses: to stroke, look, smell, tough, lick, listen, and even echolalia can have the effect of stimming. In classic autism, stimming is often very obvious: handflapping is the best example. In Asperger's it tends not to be quite so obvious - although this is not always the case. There are many different opinions as to what makes an autistic have the urge to "stim". I think it is because the repetitive nature of the stimming has a calming effect, perhaps because of the release of what are termed the "body's own opiates" (not sure of the reference for that citation) - endorphins; and other chemical reactions, like dopamine release in the brain. I believe that my inclination to be drawn to stare at sparkly things is a form of stimming - it stimulates the senses of vision and as a result stimulates certain areas of my brain. In the time I am left to stare at something sparkly, be it a light with different colours, or a piece of jewellery or stained glass, I feel a peace I normally find hard to feel. It is like all my worries just drift away and I become one with the myriad colours and sparkles. Other sorts of stimming I did as a child were eating the inside of my mouth. This wasn't so good - and I still have the scars - because they'd often get infected and that would be very painful. I couldn't stop myself doing it though and still have problems remembering not to do it now I am an adult! I used to flick my leg and wring my hands. The leg flicking stopped when adults kept commenting on it and I felt embarrassed, but the hand wringing (which I could do under my school desk, or under the dinner table) remained, to the point I now have callouses on my thumb knuckles! If I am stressed, wringing my hands kind of "grounds" and calms me (the endorphins kicking in, no doubt). I wonder if other autistics get this same feeling from their particular form of stimming (which varies between individuals)? For the last part of this chapter, I will sum up with a look at Obsessive-Compulsive Disorder (OCD), another condition that is frequently co-morbid (present alongside) Asperger's Syndrome. The "pure" OCD (i.e. when it is not present with any other developmental disorder) tends to be far more noticeable and problematic. Obsessions are described as thoughts, images or impulses that occur over and over again - they are often in the form of persistent worrying about a particular thing. Compulsions are described as the actions that one takes to make obsessions go away and tend to repeat because the obsession repeats - the reapeating compulsion to do something to allay the original obsessive worry is known as "checking" and this is an important difference between your casual worries and those of a person with OCD. Someone with a casual worry will sort it out. Someone with OCD with a worry, will sort it out, but then get into a strange cycle where they don't believe they have sorted it out, so will need to go back and check that they have! It is an incredibly frustrating condition and can end up running your life if you let it. Many of the stories I relate earlier in the chapter are indicative to some extent of my problems with OCD, but here is a simplified list of just some of the symptoms of this I showed as a child:
It is important to note that most children exhibit some of the things I mention above, particularly the "being scared there may be something evil in the wardrobe"! However, OCD is different in that it is much more intense; there is much more worrying, obvious signs of nailbiting and upset and much more checking (in a particularly obsessive way) that a particular thing has been done. Notably, this checking is done even if a supposedly trusted source (e.g. a parent) has provided lots of reassurance - if you have OCD, you don't trust people's reassurances only your own. You don't have any choice about intrusive thoughts (obsessions) if you have OCD - the thoughts just pop into your head and you have to deal with them regardless of the consequences. This can mean like any other "addiction" that you learn to become secretive - as I did - about your compulsions, because you have learned that they meet disapproval. My spell in Cognitive Behavioural Therapy (CBT) helped me a lot - it gave me some mental strategies for dampening these issues down and has made my life a lot easier since. I will talk about that in another section. Back to the story. One of the main - and enduring - special interests I had as a child was animals: particularly horses, dogs and cattle (in that order of priority). For me, horses are the most beautiful creature on our planet. I gleaned books and information about anything to do with these animals: the various breeds, their behaviour (ethology), veterinary aspects (anatomy, parasitology and aetiology particularly fascinated me), husbandry (i.e. feedstuffs, digestion, vitamins and minerals and why they are important, etc) - you name it. I also spent a while where my special interest was horse bits! I still have all the notebooks I made about all these subjects - some dated in the seventies when I was below 10 years of age. I was never that coordinated on the ground, or with people, but seemed to have a natural affinity with animals of all types and I feel more phyiscally coordinated when I am on a horse (or swimming) than when I am on the ground! I was lucky to have my interest in animals indulged from an early age. When I was a young child, I was bought little china horses, and also those plastic barbie horses (the dolls were ditched!), and also had regular riding lessons. I was also bought a dog (or really, it was for the whole family!) when I was about six years old. That dog had to be given away because she kept escaping by jumping the gate, but the dog we got after that, a black Labrador named Jilly, became my best friend and I wandered all over the place with her and used to sneak her up to my bedroom at night to sleep! She was there with me all through my childhood. When I moved out of home and eventually had my own house, she came with me - I was aged twenty-four when she died: she had lived to the grand-old-age of eighteen! I was devastated when she went but luckily by then had got two other dogs and another I used to frequently look after and they kept me busy. To this day, I couldn't live without at least one dog in my life and still have one of the two Jack Russels I had when Jilly was still alive! My love of cattle was indulged purely by the fact that there were always cows of some type or another on my grandparent's farm, where I used to stay a great deal throughout my childhood. I used to spend hours studying their behaviour and communicating with them. The rest of my gran's side of the family were farmers too, so I used to get to spend time with all manner of breeds and species of farm animal! It was always exciting when the vet came (and later when I tell about the horses below). At some time I had decided I wanted to be a vet and to this day I regret I was not able to persude this career - I loved learning from the vet and used to ask all sorts of questions. Later, I was allowed to give injections (e.g. antibiotics) to the cattle - I couldn't believe how hard and far you had to push into a cow's hide to do this! The other thing the adults found strange was that i seemed to have less fear of animals than I did people! My gran often recounts how scared she was for my safety when one day she saw me as a four-or-so year old child sat out in the field surrounded by a herd of Friesian bullocks all with their heads bent down to me. Apparently I was telling one of them in a rather insistant and repetitive manner to "sit" (I was very keen on Barbara Woodhouse as a child - she would say "sit" to the dogs she was training in a very particular manner which I used to mimic). I remember doing this clearly and it makes me laugh a lot now to remember how hard I tried to get the unfortunate bullock to sit - obviously it didn't! Later, when I was about nine years old, there was a particularly tame bullock whom I named "Shah" because its black and white markings seemed to make the map of the Middle East! I actually taught this bullock to let me ride him, which initially involved trying to persuade him that my running jump to attempt to get on his back didn't mean I was gong to hurt him! Once we were past that problem, he'd quite happily let me sit on his back whilst he ambled round the field getting on with his primary business of eating the grass! Sometimes I'd fall off though - cattle can suddenly get spooked by something, or sometimes simply get the urge to have a bit of a romp! I didn't get hurt, but unfortunately one of my cousins, whom I had persuaded to have a go on Shah one day, did. She was bucked off straight onto a tree-stump :-( Guess who got a bad telling off. The day came when Shah "disappeared" - I was so upset and nobody would tell me where he had gone. Soon afer, I was horrified to realise that I might have eaten him - he'd been slaughtered for beef! This is when I first decided to go vegetarian. The idea of eating such gentle and kind animals - animals who have been my friends - is unthinkable. But that's a whole 'nother story. Horses-wise, my upset at Shah's demise coupled with the closure of my preferred riding stable led me to a depression sufficient that it was perhaps what persuaded my parents to buy me a pony. I was ten years old - how lucky was I? It certainly shifted my depression (something I used to suffer from a lot as a child). Many girls have such dreams and mine had been realised. The pony we eventually chose looked like a small thoroughbred and was flea-bitten grey coloured. Apt then, that he should have a stable-name of "Flea" - his show name was "Flying Colours" and I kept him at my grandparent's farm. I loved that pony and was an active member of the pony club and the Prince Phillip Cup Team. This was great fun, apart from having to deal with some of the other children who were often rather nasty to me. Howeer, I particularly loved show-jumping at which I became quite proficient and used to enjoy the fact that I'd often beat some of the nastier children in shows! I expect the reason the other kids were nasty to me was I was such a helluva know-it-all. In fact, because of my obsessive studying I did know a hell of a lot but it's best to keep quiet about it! I am very grateful to my parents for having given me something that, for the first time, would truly allow me to experience peace: those times riding around the countryside on my own - especially riding through woodland where no human could hassle me. It was wonderful and I miss that a great deal. I got too big to ride Flea and, if I wanted to progress my riding career further, I was told he would have to be sold and a larger horse bought. By this time I had decided I wanted to be a famous showjumper like Caroline Bradley (my heroine at the time), so sold he was. I remember that was my first real taste of grief. I had realised the logic of selling him but hadn't realised how the actuality of him leaving would affect me - that part didn't occur to me at all. I was devastated for ages and kept in touch with the new owner. I'd said if she ever needed to sell him to let me know, hoping I'd be able to buy him back. Apparently that phonecall came but my mother answered the phone and never told me until a few years later. I found it very hard to forgive my mum for that, but she of course thought she was doing the right thing! I spent ages trying to find where he had gone (the family had moved to somewhere in Devon, apparently), but to no avail. So that was that. The next horse I got was a different story. My Dad's company had decided to sponsor me for show-jumping and Benjy (The Jazz Man), a three-quarters thoroughbred potential star was bought for me. I was only thirteen and "over-horsed" as they say. Within a few months of having him, he fell in a ditch and got caught up in some barbed wire and was off work for six months with a punctured sole and torn ligaments. When he and I were back in training, he hated flat-work and would rear-up in protest. The only thing he wanted to do was jump and very talented he was too - I won many competitions with him. However, even my riding instructor refused to ride him in the end, he was just too difficult to handle. Then, when I was about fourteen, disaster struck. I was out excercising Benjy on a local racehorse gallops that I had been granted permission to use and he bolted with me, somersaulted over an irrigation ditch - and I landed up in hospital. Benjy was fine luckily, I wasn't - I'd twisted my torso (which means to this day I have to have osteopathy) and smashed my face up. I was very lucky, actually - the only operation I needed (they couldn't do anything for my back) was to re-break my nose and fix it. Benjy had to be sold. At this time I was spending a lot of time training and being a groom for a well-known showjumper in the school holidays, so she took him on and sold him. After my accident, I carried on working for her - she would take me around with her to shows as her travelling groom (I got to meet lots of well-known showjumpers, which was fun) and let me ride her horses. However, after one of her horses became difficult to control, something happened in my head as a result of my accident, and almost in that moment it seemed, my confidence left me. She noticed this, and kindly suggested I wouldn't be able to help her anymore. So that was the end of my riding for the time-being. A few months after Benjy was sold, I heard that he had qualified for a competition at the Horse of the Year Show. I was devastated - I'd put all that work and effort and training into that horse, and someone else was to reap the rewards. I was also devastated because I knew that the career - show-jumping - that I had my heart set on was no longer to be. When I was older, I got back into horses, but more on that later... So what of schooling? Click here to find out... |