Autism, is it really one thing?

I struggle quite badly with my autism.  On a surface level, this is not automatically apparent because I can camouflage my difficulty through appearing calm and socially acceptable. In structured one to one settings, I can put on a good social front. Yet my understanding of relationships, how to relate to others on an emotional level, is virtually non existent. I really struggle to navigate the world outside of my very tight routines and self imposed schedules. I get so irritated about this because I want to be productive, to achieve, and I resent the fact I can’t work. Even voluntary work can be a struggle at times, although I try and seek it out in moments of energy. A lot of the time, though, I procrastinate. The effort involved in just filling out a volunteer application form is too much, too onerous, when I’d rather read or follow my usual habitual routines. I get stuck in my ways, as I’m very rigid. My brain finds it excruciatingly difficult to concentrate on anything outside of my interests or source of motivation at a particular time, which is nearly always a narrow suite of activities : cooking, reading, writing up recipes.

I have just one friend, who I hardly ever see, and no one other than my family and closest support networks to help me in times of need. I can’t navigate unstructured social encounters because it hurts my brain to do all the expected social moves, and I have little social motivation outside of my established  support or interest networks.

I have achieved a University degree, over 10 years ago, and I have no idea how I managed that. But I was less tired back then, I had less to think about, as my parents cooked for me, washed my clothes, organised my files etc, and I spent all day every day holed up in my bedroom, in my bed, studying intensively for hours at a time, complete mono focus on my area of study, History. I was fresh out of school and the routine was not too dissimilar to being in 6th form.  The University was a 20 minute walk from my house, as I could not handle halls. My life is quite different now, and as a fully fledged adult, I  have far more activities I have to perform, because my parents no longer cook for me or wash my clothes. These activities consume a lot of thinking space, although cooking is also an area of total obsession and interest. But it means I have very little mental space for anything outside of my routines.

My sensory issue around noise has increased with age, and in general I feel a lot more over stimulated and on edge than I did ten years ago. Alternatively I am just more aware of my sensory issues than I was back then, as I’ve always been easily distracted by external noise, but used to not dwell on it so much. With awareness comes fear, and my sensitivity has turned into an anticipatory phobia. I worry about noise even when it’s quiet, because I am more aware now of how much noise affects my ability to concentrate on tasks.

I have also become more aware of how severely autism affects my life. I cannot relate to people who supposedly have autism yet are married with children, have full working lives and are not really that disabled. Part of this might be to do with my own inability to understand other perspectives.  I have not moved out of the egocentric stage of reverting everything back to myself. I wish I could understand it more, as it would resolve a lot of anxiety, but I don’t get how I have the same condition as someone who can achieve things that I find so impossible. I also, though, genuinely think that autism is not one condition, and they need to separate disabling autism from non disabling autism. It affects my self esteem quite negatively to read and hear about people with autism who have achieved the trappings of normal life, and are well integrated into their communities.

It is possible that autism is also now being over diagnosed. On the one hand, it’s good that people are being understood and supported, and over diagnosis is better than intolerance and a denial of difficulty. Yet severe disability caused by the autistic syndrome is, and always will be, rarer than the milder shadow autistic syndromes that blend into normality. The latter may well cause real difficulty and stress, but if someone can integrate into society, it means their brain is less severely impacted on an executive level at least than someone who can’t, or can only do so with a lot of support. Being able to form deep relationships presupposes social motivation and drive, as well as at least some ability to reciprocate long enough to make the thing work. It requires putting yourself second, something that many more impacted autistics cannot manage. The more impacted autistics are being left behind because of a sea of super able identity first autistics, who lead practically normal lives, with kids, relationships, and/or jobs. I am not at all denying their struggles and disability, but there is disability and then there is Disability, and the latter entails not even being able to develop a friendship beyond an egocentric kid level. Autistics with greater impairment are being drowned out, not helped by speculations about people being a bit autistic, despite having very successful lives. Some balance is needed. Diagnosis needs greater refinement. Autism is not one condition, it’s a family resemblance condition. The conditions might share surface similarities and traits, but have massively different outcomes and  degrees of integration and type of brain impairment.

We currently have a one size fits all diagnosis that is dominated by the most able ”Asperger’s” type autistics, many of whom are just slightly eccentric geeks, who blend into normality. Mental health problems among this population are profound, as even very mild social impediments can cause difficulty. But this is not quite the same condition as the one that makes someone a virtual recluse, with the egocentricity of a child, and very limited ability to access the outside world.

Interests as an autism aid

In this entry I am going to talk about the importance of interests in making life more bearable for autistic people.  I am going to focus on my teenage years because this was the time when interests really helped me manage anxiety and social isolation.

From the age of 11 until 21 I was extremely interested in the actress Kate Winslet and babies. What this means is that every single minute of every day I was relating to the world around me through the prism of Kate Winslet. The baby obsession was generated by Winslet, after Winslet had her baby Mia in the year 2000. I needed to find out what it was like to be pregnant and look after babies, so that I could better imagine what Kate Winslet was experiencing. I began to read Practical Parenting magazine, Mother and Baby, and Pregnancy and Birth. I read every single article in these magazines, skipping nothing, not even the adverts. I kept the videos and CDs that sometimes came with the magazines, and would watch them on repeat. For example, DVDs about potty training or weaning, and nursery rhyme CDs.  I kept the baby dummies from the magazines, and sucked them as if I were a baby, and I watched Telly Tubbies and other children’s TV. I even ate rusks and petis filous baby yogurts, anything to better access the world of Kate Winslet. Before long I was an expert not only on Winslet’s life, but on child development and pregnancy.

The interest gave meaning to my life, which meant that even just waiting for a train could be exciting. I kept a baby spotting diary, and would take detailed notes on every single baby I saw, following them round the town centre. On trains I would move seats to sit opposite a baby. Every movement the baby made was recorded, as well as the make of pram and the interactions between parent and baby, nothing was missed. The interest inspired me to do work experience age 15 at a local nursery school. As soon as I got home I recorded in great detail what the children had to eat, and what they had said, and I memorised all their names and how they looked. Every time I interacted with them, I had an image of Winslet’s toddler Mia in my head, as I compared their age and development with Mia.  I carried on volunteering at the nursery until I was 18 years old.  Age 17 I did work experience at a local primary school, working with the infants. This was at a time when I had bad OCD around germs and illness, but the interest motivated me to be around snotty nosed children in spite of this anxiety. I think of it as though my anxiety and interest were a pair of scales. The higher the interest, the lower the anxiety, and as long as the interest is in the ascendant, I can be motivated to do things I would not be able to do if the anxiety were higher than the interest or if they were poised equally on the scales.  The interest also motivated me to do a brief childcare course associated with my school, where I learned about child development. The course was filled with other kids, some of them from a different secondary school to my one, and normally this would be very anxiety provoking. But again, my interest was higher on the scales than my anxiety.

The Kate Winslet interest meanwhile motivated me  to start attending a dance class every Friday after school, which I kept up for over 4 years. By attending this class I felt closer to Winslet, and I vaguely imagined being an actress myself, something that has not materialised!. We did tap, ballet and modern dance, as well as singing, and we put on shows at a girl’s school and Theatre. I had no stage fright and really enjoyed the rehearsals. I felt a great sense of achievement after being on stage, particularly as it could take me a long time to learn a dance routine (as I can struggle with certain aspects of coordination). This class provided me with at least some social interaction, as I had failed at making friends in school. The kids at the class were all younger than me, which helped, as I found it easier to relate to younger kids.

The greatest Winslet related achievement occurred one summer when I was 16 years old. I saw Winslet’s older sister, interestingly enough also called Anna, perform with a local Theatre Company called Tour De Force, in Shakespeare’s Midsummer Night’s Dream. I was lucky enough to get her autograph after the performance, and I saw her perform again in Macbeth in September, which again I would not normally have done were it not for my interest. I learnt that Tour De Force were recruiting extras for next year’s performance, and I applied. I had to travel in a stranger’s car to a  remote office in the countryside in order to be interviewed. Again, I had no fear because I was so interested in being with someone who had actually met Anna Winslet!!. I was over joyed when I got given the extra role of a peasant girl in  Shakespeare’s Much Ado About Nothing. I attended every rehearsal, and loved looking after the actor’s children (meaning both my Winslet and baby interest were satisfied). Anna Winslet herself was no longer acting with the company but that did not matter. I was just over the moon to be performing with people who had acted with Winslet, and I became slightly obsessed with a blond haired actress who I had seen performing with Anna Winslet as one of the witches in Macbeth. I kept looking at her and studying her, although she probably did not notice!

Another way my interest helped was at school. I related all my school work to Winslet. For example in History I related what I learnt about the Suffragettes in an indirect way to Winslet, and when I learnt about weddings in Religious Education I thought about Winslet’s wedding. Everything could be related to Winslet in my mind, even things that had only an indirect relationship. Via Winslet I memorised Midsummer Night’s Dream off by heart, and learnt a lot about New York, where Winslet was currently living.  Subjects that might not normally interest me became interesting through Winslet, and eventually I learnt to become interested in a greater number of things. What appeared initially to be a very narrow interest, actually enabled me to branch out and open up my horizons.

During family walks on Sundays or on holiday I quizzed my mum and dad about babies and Winslet facts, and this meant that before long the whole family knew almost as much about Winslet as I did. It was the only way that I could interact with them, but at least it was some interaction rather than nothing. I memorised Winslet’s films off by heart as well as her TV interviews, and on our walks, which I otherwise found boring, I would act out the interviews or the Titanic screenplay.

At University, where I studied History while staying at home with my parents, my interest in Winslet gradually waned. At first this greatly bothered me because I worried that nothing would be meaningful anymore. But it was around this time that I was diagnosed with autism, and before long I was obsessed with autism and finding out everything I could about it. I volunteered at a local autism charity at a time when I was hardly leaving the house, but my interest motivated me to travel. I had not been on a train for years, but I was so keen to volunteer at the charity that I overcame my anxiety on this particular route. I also discovered an interest in public speaking and autism awareness raising, which I still have to this day, over 10 years since my diagnosis. Normally travelling makes me very anxious because of a combination of factors. I have OCD which makes me worried about germs, going to new places scares me in case I can’t get back home or something bad happens. But when I’m called to give a talk, the sense of purpose, interest and motivation overcomes this anxiety.

One of my ongoing interests since childhood has been food. As an adult this interest has deepened still further, after a brief lessening in intensity during the Winslet years. The interest motivates me to constantly experiment in the kitchen because I love cooking and collecting recipe ideas. I have some food related anxiety around hygiene and germs as well as some trepidation around trying new shop bought food, but my interest has helped me challenge this anxiety. I eat an exceptionally varied diet because of my interest in healthy eating and nutrition, and my interests mean I am rarely bored. My other major current interest is reading, particularly food  or philosophy books but also anything about certain historical eras and fashions that catches my attention at a particular time. This interest can cause stress as I worry constantly that my reading routine will be disturbed by noise, but on the positive side it means I am constantly learning and always have something to get up for in the morning.

The general positive message I wish to impart in this piece is that special interests can help an autistic person broaden their horizons, overcome anxiety, keep boredom at bay, and can aid learning. It’s important to work with a person’s interests, no matter how narrow and obsessive they appear, and try and use that interest to the person’s advantage.

Image may contain: 2 people, people smiling, people sitting, people standing and child

In the picture above I am holding my brand new school lunch box while sitting on my Aunt’s lap. I was obsessed with food (still am), and this interest helped me get used to starting school.

Social Interaction timeline, part 2, teenage years

Early teenage years

I was excited about starting secondary school. In July there was an induction day, which provided a chance to look round the new school and meet the other kids. On this day I got chatting to a girl the exact same age as me (even sharing the same month of birth), and she said we could be friends. I was so happy!. I felt that I was starting a new chapter in my life, leaving behind my friendship difficulties, and everything would turn out just fine. The summer holidays brimmed with optimism, and on our holiday in Exmoor, I talked and thought about my new friend and what happy days might lie ahead.

On starting school in September, I was pleased to find that the girl was still my friend. She locked her arm in mine, and clearly we were ”best” buddies. We went shopping together, and then she invited me to her house in the countryside, near a farm. Her dad made us cheese and tomato toasted sandwiches, on white bread, while we watched television. Later she got us some chocolate lollies from the large freezer, and we ate them while chatting in her summer house. At this age I did not mask at all, so I did not feel at all socially nervous or stilted, I was just being myself.

Unfortunately being myself was not good enough, as I was  to discover. I was very possessive of my new friend and I had no intention of sharing her with the other girls. One day, shortly after starting at the new school, we were in the IT room, and another girl got chatting to my friend. I felt really left out and uncomfortable. Later my friend again tried to introduce me to the other girl, making me feel even more excluded.

In October year 7 went on a trip to the Isle of Wight. I wanted to share rooms with my friend, but for some reason this was not possible. I had to share with two other girls, and my friend shared with another girl, making me feel insecure. On the boat trip my friend chatted mainly with the other girl, and I began to feel increasingly alone. Then, one day, I noticed my friend walking arm and arm with this girl across the park that surrounded the hostel where we were staying. I watched them through the hostel windows, and burst into tears. A teacher asked me what was wrong, but I could not explain, perhaps because I was aware how silly it might sound.

Shortly after this trip, my friend casually walked up to me in the school corridor and told me we were no longer friends as I was too clingy and followed her around everywhere.

Meanwhile, one of the girls who shared a room with me on our trip became increasingly friendly towards me. She invited me to her house (I remember we ate pizza while watching TV), and she came to mine, and played a game of tag in the park. This girl mothered me. She treated me as though I needed protecting. In Science class, she noticed that I was scared of the bunsen burners, and kept on asking me if if I was alright, if I was well,  or if I needed help, and she said to the other kids, ”leave Anna alone”. I quite liked being looked after like this, but it also felt vaguely oppressive. The girl invited me to join her and her group of friends at break, but they were chatting while I was on my own, not being able to enter the group as I did not know what to say. Eventually I gave up and lost contact with this girl.

My next experience of friendship was even briefer in duration. I was standing all alone at lunch by the vending machines. A girl approached me and said she wanted to be my friend, and we could even be best friends. She invited me to her house, and she came over to mine for tea soon after. I then got invited to her house again. I of course remember the food: chicken and chips the first time, quiche with her whole family the second time. The time was spent painting each other’s nails in her parent’s bedroom, playing a board game with her mum and sister, and lounging around in her hidey hole. This girl gave me a folder with homemade cards inside, all about being my best friend. However, after my second visit to her house, her mum phoned my mum to say that, while I was a nice girl, her daughter felt that I did not speak enough. My mum told me that I must try and speak more, and keep conversations going. But how do you know what to talk about, I asked. ”You just do”, my mum replied.  Not long afterwards, the girl invited me to sit with her in the year 8 picnic area one break time and said that she was very sorry but that we could no longer be friends as she preferred girls who were more chatty.

At home, meanwhile, I only talked about Kate Winslet, Titanic, and babies (connected to Kate Winslet). I suppressed talking about this at school, but I still thought about Winslet 24/7. At home I quizzed my mum about Winslet and babies.

Middle teenage years

So three failed friendship attempts in just under two years!. I now  increasingly isolated myself. In  lessons I often sat alone, but sometimes I sat next to a nice well behaved girl, who  I could chat with during lessons. Sometimes nice girls let me join their group, but they were not friends in the true sense as I never saw them after school, and they were more like acquaintances who tolerated my company. I think I began to mask slightly, because I tried to fit in by talking in a considered way, trying to blend in and pass as a quiet, well behaved girl.

However, sometimes I gave up trying not to look strange, and there were occasions of inappropriate behaviour, although less so than at primary school. My inappropriate behaviour was an attempt to get a reaction, to be noticed, to bring some excitement to my life, or to make me laugh.

I was mainly inappropriate in front of the kids, and only occasionally in front of a few teachers. In the latter case I got sent out of French class a few times, to stand in the corridor, for talking while I was supposed to be working, and the teacher told me off for writing obscene words  about sex on a bit of paper. I also joked that hair on a brush was pubic hair to some girls, who laughed, making me laugh, as though I’d created my own comedy sketch. It was so immature it’s cringe worthy looking back on my 14 year old self, and it certainly did not help me make friends, although I’d given up on this by now, and was reconciled to being a loner.On another occasion I pulled my knickers down in front of two girls in my class to get a reaction, and during lunch time I gave a mock ”sex education class” to a group of boys. I thought, let’s talk about the most taboo subject ever, sex, and that will get me noticed and  get kid’s talking about me. I did not care that they  were ”laughing at you, not with you”, as two girls explained (I did not grasp the distinction until later), only that I was getting a response.  The worst thing I did though was to tell kids that I had  had sex with my dog (you can’t get more taboo than that). This story went round the school, and my dad even received a phone call at work to ask if I was under protection from social services. I thought it was only a joke (my sense of humour), and so  I was not expecting there would be any consequences or that I would get really told off about this at home, as what are you supposed to do when you have no friends – just being quiet all the time was boring and unstimulating. It was almost like I had two personalities, and different teachers saw different versions of me depending on whether or not I liked the lesson or the extent to which I feared their authority.

I sometimes visited the lunchtime club, which was in the learning support base. Most of the kids who went here were unconventional, and more willing to accept my quirks. I befriended a girl in the year below me, and went to her house a few times, but the friendship did not continue, probably because we were not in the same peer group.

My mum sometimes told me I would soon become very unhappy if I did not make friends, but I shrugged this off as I had my Kate Winslet obsession and all my attempts had been in vain. At school I mainly spent break times alone, locked away in a toilet, or in an empty classroom cabin.

Late teenage years

When I started 6th form, after doing a lot better in my GCSE’s than I anticipated (largely thanks to my parent’s help), I became more socially aware. I began to mask more consistently, and did not misbehave in any of my lessons. I had no real friends, although one girl was very friendly towards me in the common room at break times, and after I left school we stayed in contact for a while. I masked with her in the sense that I consciously tried to sound like a nice, well behaved, mature girl, by copying the way I saw other ”nice” girls behave. But I felt inauthentic when around her because I was aware I was acting a part and  felt that I was hiding a bad secret from her, because my other side was weird and strange, immature and not at all like the other girls she liked. Unfortunately we are no longer in contact because I lost interest and motivation in masking when around her, and I felt our lives were too dissimilar to have much in common. My OCD also got a lot worse during this age, which obviously meant I was even less motivated to be around people than I was previously.

When I started my local university (I stayed living at home with my parents), I befriended a girl in my class. However, although we sometimes met up out side of uni for tea, and we sat in class together, the friendship did not develop beyond these parameters. Again, I was masking more earnestly now, and so the interactions felt more awkward and hard work. In the past, I was less socially aware but because of that interactions were less tiring. My OCD also meant I could not go out with her as often as I might otherwise have done, and I regret this because I feel I could have made more of an effort to stay friends with her.

In part 3, I will bring the timeline up to the present.

A timeline of my social interaction development, part 1

I am focusing here specifically on friendship and play. I will talk more about being literal and other issues in another blog.

Infancy

I can’t remember much from this time, but my mum told me I was a happy, cheerful, giggly baby with a lot of energy. I was always smiling.

My mum also told me that as a toddler I enjoyed running around people in circles while giggling, I guess it was a little game that amused me. Although I was fine with cuddles as a baby, as a toddler I often resisted cuddles unless on my terms. I also often had very long tantrums when I did not get my way or had to be physically restrained in a pram. I often ran off and did not appear to have any anxiety (strange, considering how anxious I am as an adult!). Age 18 months I was with my mum in the toilets at LA airport. I suddenly decided to crawl under the door when my mum was not looking. One minute I was there, the next I was gone, and my mum had no idea where I was. She was terrified!. When she finally found me I was running through a crowd of people, giggling, completely oblivious to the panic I had caused and my name being called. Unlike other toddlers, I was not at all clingy, and boldly ventured forth. My mum later said she realised it was odd only after my brother was born, as he displayed the normal wariness of strangers that most young children experience.

Young childhood

I befriended a girl a year younger than me at nursery school. We enjoyed hiding under the chairs whenever a teacher walked by. My mum facilitated the friendship because she was friends with the girl’s mum, and they arranged playdates. However, once I started primary school we were no longer friends.

When I started school, I had no one to play with at play times. The teacher helped me interact by finding two older girls to be my playmates. At first this worked really well. Every break time we played dungeons. I can’t remember whether it was me or them who invented this game, but it was great fun!. We took it in turns to be the dungeon keeper and throw the others into the dungeon, which was at the corner of the playground. When it was my turn, I gave them imaginary stale bread and rotten carrots!. I expected that we would play this game forever and ever, but one day they had completely vanished and would not play this game anymore. I was then on my own. Periodically I would try and get their attention, for example I remember rolling on the ground during a school sport’s day when we were supposed to be paying attention to the teacher. I did this because I noticed the two older girls who used to play with me, and I wanted them to notice me and say hello, but they never did.

In year 1, I poked my tongue out at the girls sitting at my table, much to their annoyance.  I also looked under the door at them in the toilets, which really upset them. One of the girls opened her mouth as if she were about to bite me, and I ran out of the toilets screaming and was about to run into the classroom, before the teacher put out her arm to stop me mid flight.

I told one girl that she would get really fat if she did not walk to school. My parents had been talking about the girl being driven to school when she  lived only a short walk away, but I did not realise that you were not supposed to share this information with the girl herself. It was no surprise that she did not want to be my friend!

The year 1 teacher, at my mum’s first parent’s evening, told her she was concerned that I was not interacting with my peers, and that my  mum could help by interacting more with the other mun’s at the school gate. The school therefore passed the buck to my parents, but didn’t do anything at school to help me  with my social development.

Middle childhood

Age 6 a  girl who had just joined the school bought a favourite book into school with her, and she was showing everyone her new book in the playground. A group of girls were standing in a circle, and I approached them to see the book and to try and play. I am not too sure why I did this – it might have been just on impulse – but I tore the top corner of the book. The girl told a teaching assistant who told me to stay away, but I went back and tore the page corner again. And again. And again. Finally everyone was at the end of their tether, and an older girl was instructed to take me to the head teacher. I was in floods of tears. As punishment I had  to sellotape the book back to together while everyone else got to watch TV.

Age 7, I would often walk round the classroom, pretending to be a steam train. I would ask kids to walk behind me, forming carriages. I did this while I was supposed to be working, but I was often so restless that I would not stay seated.

Age 8 I tried to get a reaction from other children by wetting myself in class. I know, this is gross!. I sat wetting myself on the seat at the table, and found it highly amusing when the other kids looked disgusted.

Outside of school I would approach other kids on holiday, with no fear, as I wanted to make friends and it was less stressful to try to do this on holiday. At school, I sometimes played with much younger kids. One of these kids, in my brother’s year, was also later diagnosed with autism. I had a very volatile relationship with this girl, and we more often than not annoyed each other, before being friends again and annoying everyone else by disrupting their play!

At home meanwhile my dad facilitated a friendship with the neighbour’s children, who were younger than me. I found it easier to play with younger kids because socially I was very immature. At first this worked well, and we raced each other on our bikes, or I made mud pies with the little girl who was 4  years younger than me. I sometimes talked to one of the kids through their hedge. Later on however, we formed gangs of about 3 kids each (I can’t remember whose idea that was), and one moment I sided with one gang, the next the other. Eventually they all turned on me, and one of the kids pushed me over on the grass in their garden.

With adults, I sometimes annoyed them by not stopping a game when it was no longer amusing them. For example, one time I was walking with my Uncle and Aunt. I pretended to be a crocodile by snapping at them and jumping up. At first my Uncle laughed but I did not stop and soon he’d had enough, but I did not get the hint. Eventually he snapped at me and my mum told me off. I ran home crying.  On another occasion I told my Grandpa, while on a walk, a really long detailed story. At first he enjoyed listening to me, but then he’d had enough. However, I did not stop the story!. I found it really hard to stop even once I was told that I should stop. On another occasion, I kept on playing the recorder at an after school club, long after the other kids were telling me to stop as they were getting annoyed. I just laughed and carried on playing. I still sometimes struggle with this today, although I am now a bit more aware and able to mask this tendency when I’m out in public.

Late childhood

I finally made a friend in my peer group at school. My mum was on friendly terms with her mum, and so the friendship was facilitated by our parents. This girl, like me, was in the slow stream at school, which meant that she had learning support, although she was not, to my knowledge, autistic. Whenever she came over to my house for tea, she let me play with her at school all day, and I was so pleased that I had her all to myself as I was very possessive. However, when she went to her other friend’s house, she virtually ignored me and I ended up annoying her. I had annoyed her during young childhood too, before we made friends. I poked my tongue out at her, and one time, age 6, I crawled over to her on the classroom carpet during reading time and pinched her legs. I’m surprised she later put this behind her and still befriended me! On the days she came over to my house, my mum  served us quiche and potato croquettes, which I loved, followed by yogurt fruit corners. I played teachers with the girl, and we took it in turns to  either be the teacher, issuing out punishment, or the naughty kid. In the last year of primary I told the girl that we would get married age 20 and have kids. I really believed this would happen; just shows how naive I was at that age!. I also believed everything the girl told me. She often made up stories about the school being haunted, or the ground near a tree creaking because of ghosts. I took her at her word, but it did stimulate my imagination.

At school, when we were friends, the girl handed me bits of food from her lunchbox during lunch time. This was not allowed, so she passed her hand under the table when no teacher was looking, She handed me crisps and bits of wagon wheel. When we had fallen out, I did not receive her food offerings, so I tried to stay friends in part because of the food!

When we were not friends, I was often alone in the playground. I would run really fast round the field, screaming,  or pretending to be an aeroplane with arms outstretched. I ran right through kid’s play, which really annoyed them, but I only found this even more amusing when they gave chase!. They could not catch me as I was so fast. I often annoyed kids in my class. A boy once retaliated by tripping me up in the playground, and one boy kicked me hard on the leg. Most of the time however I was not physically harmed by other kids.

I enjoyed helping the younger kids with their reading in year 6. Each child was allocated a child in year 1, who had to read us a story. I was told by the teachers that I was very good at this, something that I still remember with affection. However, one time I got told off for showing a book about puberty to year 1 children at break time, because I enjoyed educating them. The book was confiscated.

Outside of school I sometimes annoyed random strangers. On a few occasions on holiday in Stratford Upon Avon, I invented a game while my parents were drinking tea outside a cafe. I involved my brother in this naughty game, which was great  fun for me, but not for the recipients. It involved running up to random strangers, tapping them on the back, and saying something very silly to them when they turned round, such as, ”would you like some chicken?” (totally random!). One time, on the bus, I kept stroking a woman’s hair. She gave me the most sour face when she got off the bus!

I generally played okay with my brother, but he was two years younger than me, and, well, my brother, so it was less demanding. We played teddy bear tea parties, which involved lining up all our cuddly animals, including my dolls, and walking them one by one round my toy tea set. I served them plastic food as well, and sometimes my animals annoyed my brother’s animals, or vice versa, and they got told off!. We also played with my brother’s toy cars and his Thomas the tank engine railway set.

In part 2, I will continue this timeline into teenage years and adulthood.

 

 

Random memories and musings

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I loved the old tractor at Clifford Bridge Caravan site in Devon’s Dartmoor National Park. We visited this caravan site for two to three weeks every summer from the age of 2 to 9. The old tractor was held in place by cement, and kids enjoyed climbing over it and playing with the steering wheel.  The tires were warmed by the sun, there was a clutch, and you could pretend that you were actually steering a real tractor down dirt country tracks.  There were two tractors, so if lucky, my brother and I could both get a ride.

Near the tractor there were swings. I loved going to the swings to try and make friends. In fact, I  saw the holiday as a chance to make friends with the other holiday makers, something that I really struggled to do at school and home. One day a little red haired girl sat on the swing next to mine. I was about 8 and she was about 4. I kept asking her over and over, ”what is your name”, ”how old are you”, ”where do you live”, to no avail. At long last my persistence paid off and she began to talk. I now had an instant playmate and we found each other in the open air swimming pool the next day. She even invited me into her tent!.   On another occasion I talked to a girl with very long brown hair that was so long it trailed on the ground when she tilted back on the swings. This girl played tag with my brother, myself and a younger child.

One day I decided to turn my bunk bed in the caravan into a bus. I  drew signs on a bit of paper, cut them out and stuck them round my bed. I really wanted to show long haired girl my creation, so I took her to the caravan and introduced her to my dad and the bunk bed bus. Again, I was so excited that I had a friend!. Seeking out other kids on holiday was a strong interest of mine, as, unlike at school, they were not in groups, there was less noise and more space, and I felt more in control and better equipped to make advances. Of course I never saw them again once they had left or the holiday was over, but in  that brief moment I had  a play mate. Unfortunately, as an adult you can’t randomly go up to a person and say, ”would you like to be my friend?”. This is because  adults don’t play in the way children do. Although I really struggled to interact as a child in groups, at school and to maintain any friendships over time, the next level of friendship development (complex small talk and non verbal understanding) is  a million times harder. As an adult you no longer have the option of being friends just for a day or just while doing an activity, and I feel as though I am locked in  the childhood stage of friendship development.

In another creative spell I decided  to make paper balls by rolling bits of paper up and then wetting them under water, so the paper stuck together. I also created my own card game that I took out with me on a country walk and played it while walking with my dad.

I collected holiday brochures from the information hub. I cut out pictures of girls, usually with long blond hair, stuck them to a bit of paper and wrote a diary about their life and what they ate.

Every morning we went swimming in the open air pool. My dad blew up my arm bands and fitted them to my arms. This was incredibly exciting!.   I tip toed across the grass and pebbly track, and then up the steps and down the concrete walkway round the pool. Once in the pool I swam to the deep end, climbed out and ran back to the shallow end, got in again and swam back, over and over and over again. One year however I developed a fear of swimming in the pool, and my mum had to hold my hands and tow me round the shallow end. She was frustrated because I used to love swimming round the pool. Eventually I overcame my fear and swam back and forth again.  Unlike the indoor pool I visited with my school, this pool was quiet and unstimulating. I was also under no pressure to learn how to swim unaided, and no teachers were trying to get me to jump into the pool, something which terrified me.

Just beyond the pool there lived a goat called Donald, and one year a sheep. I befriended Donald and enjoyed feeding him grass and weeds through the fence.

Before going on our country walks we played the card game Happy Families while sitting outside our caravan at a picnic bench. We also had boiled egg and toast outside for breakfast, and one time we had garlic sausages. My mum bought the sausages at a specialist butcher in nearby Morten Hampstead, and walked over the moors with them in her backpack. I could smell the garlic all the way back to the caravan, making me feel very excited.

The inside of the caravan had a distinctive smell that I loved. I enjoyed dangling my arm outside the window next to my bunk, feeling the plastic ribbed exterior of the caravan. One time it rained hard as I went to bed, and I remember that the sound was soothing.

We played football outside the caravan, and I enjoyed throwing myself down hard on the grass, because I’d seen people do this at school and I was copying them. We also played cricket. I had been walking all day but I still had a lot of energy to burn.

Daisy was a nice old lady who lived in a caravan near ours, although her caravan was more like a tent van. Daisy was at the site every year, and she gave my brother and I free tennis balls. On another occasion a friendly Dutch girl took me inside her tent and her mum gave me a juicy nectarine and a pair of pink heart shaped glasses.

One year I found a bicycle helmet on the old tractor. It was covered in stickers and I took it home with me.

On  my 7th birthday I received my very first watch. My mum taught me how to tell the time. I looked at this watch all day as we went on our walk, and it made me feel really good because I could tell how much time had passed for the very first time. I also received a plastic toy chicken that lay eggs when you pressed it down.

We regularly walked to a pub called Fingles Bridge where we had a bowl of chips.  The walk was through woodland, alongside the river. My brother and I enjoyed paddling in the river. On other occasions we walked over the moors to MoretonHampstead. I enjoyed walking over the cattle grids, past the endless bracken and heather. At the small town we went to a quaint tea room for scones, jam and cream. The jam and cream came in metal dishes, and my brother and I took it in turns to scrape them clean. The cafe also had an antique shop next door, and I loved looking at the animal sculptures.  There was also a country church nearby with an organ and golden Eagle.

One year when I was very little, I threw my mum’s map into a stream,  just because I wanted to see the map being carried by the water. My mum was not amused!

A cafe we visited had a stream with tadpoles in it. I enjoyed scooping out the tadpoles into a bucket and looking at them close up.

Near to MoretonHampstead there was a fete held at North Bovey. One year there were yummy sandwiches. I had a ride on a pony. At first I was nervous but eventually I lost my fear and enjoyed the ride.

My parents took my brother and I out of school early for this holiday. I enjoyed seeing the other kids at the town open air swimming pool while we waited for the bus. I watched them swimming and felt so glad that I was on holiday, unlike them!

Walking back over the moors, we eventually descended towards the caravan site. I could see the blue of the swimming pool through the trees, a sure sign we were almost back! This was exciting as I could play on the swings and tractor while my mum prepared dinner.

One year, the last year we went to Clifford Bridge, I befriended Emily. I was 8 nearly 9, and Emily was 9. We walked together round the park and Emily taught me how to plait my hair. She also gave me a notebook and pen. Emily was a very kind girl.

When we arrived at the caravan site, I held my little brother’s hand and took him on a caravan site tour, showing him where everything was!.

On the less savoury side, each caravan had portable toilets that had to be taken to a big open sewer hole. I loved watching my dad empty the loo contents into the hole – these sort of things fascinate you in childhood!

On the last day I made up a leaving song to the tune of a school hymn. I sang the song loudly as we went for a brief last walk through the woods, before the taxi came to take  us to Exeter  train station.

The pitfalls of being a verbally intelligent autistic.

Recent research from King’s College London has found that verbally able autistics learn social skills at a price https://www.kcl.ac.uk/ioppn/news/records/2018/march/high-iq-autistic-people-learn-social-skills-at-a-price?

This news is no surprise to me, and reading it resulted in  many a aha moment.

If you have a high verbal IQ, it stands to reason that you can use that intelligence to store a verbal pattern or repertoire of sayings and even metaphors (once learnt and stored, that is). For example, at least when younger, I was very literal and misunderstood many common metaphors that other children would have grasped by my age. By adulthood, thanks to extensive book learning and exposure, I am far more fluent with metaphors, at least the ones that I have read about and memorised. Yet this verbal fluency disguises my difficulties with understanding sarcasm and jokes or white lies that involve working out non verbal cues. If you have the ability to memorise word pictures and associations (a high verbal IQ usually gifts you with this ability) it is possible to learn poetic language. This can make you appear very verbally fluent and articulate, and can even help an autistic to learn basic conversation skills. However,  context specific innuendo and irony is far harder to work out in real time social situations (although I have learnt how to use irony myself, and I have the ability to play with language, much to my enjoyment!). Unfortunately, though, this means that other people might overestimate your social ability, and when you fail to get a joke or a hidden meaning, they might express surprise or even resort to being patronising.

Verbally able autistics can, through advanced imitation and verbal learning, look really good socially, even though this is very hard work. Despite appearing to have ”got it” socially, there will always be a processing delay and an inner block over higher social nuances, which means that others might detect a difference they can’t pin down as you don’t look disabled. Therefore, you might receive the barely disguised derision of others, further impacting self esteem. This is my experience anyway. And I still don’t understand relationships or socialise with ease, but because my brain is able to memorise verbal information so well, I can project an image that is discordant with my inner reality.

This discrepancy can be compared with the uneven profile that some autistics display at school when reading. To explain; when I was at primary school I could read 5 years ahead of my age, but I could not comprehend what I was reading. I had the vocabulary but not the ability to understand subplot. Consequently I was kept back on level one reading when, all things being equal, I should have been reading advanced novels. These days my comprehension for fiction has improved, but within real world interactions, I have some mechanical ability  but without the comprehension. I can articulate (like I could mechanically quote text), but I can’t easily make sense of the rapid fire social information. I really need a translator!

The price , as this article explains, is that most verbally able autistics experience extreme and chronic anxiety and social exhaustion on a daily basis. No matter how motivated socially they are,  they still come up against the autistic social block which means they can’t understand people, struggle to read people’s emotions or know how to make meaningful connections with others. Speaking personally, I feel very alone in the world, and often feel that most people (apart from the few I have got to know and trust well) are out to get me, harbor ill intent towards me, and look down on me. Not being able to read or understand people always makes me assume the worst, and my past experience has been one of rejection and a sense that others are patronising  me or getting frustrated over my tardiness and processing delay.

The key point this article makes is that, despite apparently good surface social skills, high compensators are just as severely affected in their  understanding  of others  as autistics who can’t compensate (which means using a high verbal IQ to camouflage the social disability). Moreover, the compensation breaks down in unstructured social settings. For example, when I am with my support worker I can appear very social. I can hold a conversation with her with apparent ease, and I  certainly do not feel the same tension that I do in most social situations. This is because I am in control over the interaction, I know precisely when the interaction will end, the interaction is one to one and I do not have to expend so much energy trying to work out what the invisible rules of the game are within the interaction. It is important that people understand that superficial social ability within this circumscribed setting does not transfer to other settings. When I am in unstructured settings, group situations in particular,  I feel incredibly tense , and feel overwhelmed by all the social information flooding my senses. I find it really hard to make and maintain friendships because of the invisible social rules and unpredictability involved. But because of the apparent discrepancy between settings, this might be hard for someone to grasp if they see how well I can interact with my support worker. The discrepancy even confuses me, and can make me doubt my autism. This is because it’s so hard to understand how I can appear so social in some structured, controlled settings, yet can’t have meaningful relationships or even friendships and get so overwhelmed by the world.

Understanding the link between high verbal IQ and surface sociability is a helpful way in to understanding this seemingly enigmatic discrepancy between mechanical skill and understanding. In a sense, I exhibit advanced copying skills. I have stored enough verbal models and scripts over the years to be able to enact a seemingly successful social persona in some (and only some!) settings. But I am no less autistic than someone who can’t memorise verbal conversation skills, and, it is also easy to forget how much effort it has taken me to get here. As a teenager I really struggled to hold conversations even in structured settings, so my progress is really thanks to the ability to remember and store. All skills can be improved, even if someone is not naturally good at a task, and this is no less true with socialising. But please don’t forget the price it has taken to get there, and the ongoing exhaustion and depletion of energy that too much socialising can bring. Socialising will always be hard work for me, and, because of this, I have to carefully ration my social time. Consequently, I spend most of my time alone, am terrified of unpredictable  and unexpected social encounters , and would be very isolated were it not for my regular support worker sessions.

Compensating for poor social awareness comes at a price.

 

I fear getting ill

For a very long time I have been preoccupied with germs and illness. I can’t remember when this fear began, but I can remember having this fear as a young child. I was at a birthday party, aged around 5 or 6, and a little child had a bad cold. This child put his snot infested hand into a pile of biscuits that my brother proceeded to eat from. Afterwards, my mum said she was worried my brother would get ill. Sure enough, my brother came down with a bad cold that lasted a long time, and my mum left me in no doubt that he caught it from the boy at the party.

Other illness fear related memories include being on holiday, age 7 or so, in Stratford Upon Avon one summer, and having lunch at a pub in nearby Wellford. My cousin was ill with a tummy bug, and I was very worried that I had accidentally  sipped some squash from her glass (I had not, but my mind made me think I had). All day I was silently obsessing about this,  but I told no one. As a child, I did not know about OCD, and neither did I question my fears.

On another occasion, we were visiting my second cousins, also in Wellford, and they had bad coughs. My Great Aunty Susan said she hoped my brother and I would not catch the illness, and I spent all evening worrying about it.

I was a very literal child and so I readily took to heart any safety instruction or remarks about illness. However,  strangely for someone so obsessed with disease, I rarely got ill as a child. I have always had a really good immune system, and I quickly recovered from any colds or sickness bugs I caught. I’ve never taken antibiotics in my life, never had flu, and childhood illnesses like chickenpox were benign affairs that were over very quickly. Indeed, chickenpox, which I caught age 6, only covered one hand and arm and the back of my neck, whereas my brother, who came down with it 2 weeks later, got it so bad that my parents  initially thought he had measles!. As a teenager I could go a long time without catching any illness. My dad got the flu, twice, but I managed to avoid catching the disease, despite being in very close proximity to him (my OCD was not quite as bad at that age).

However, a few times I caught illnesses that were more severe, and I think the infrequency of them, combined with the utter lack of control, have contributed to my fear of illness.  The most memorable illness I  got was supposedly salmonella when I was 9 years old. I say supposedly because it might not have been salmonella, but this was what my mum assumed it to be.  I contracted the illness after eating an egg that my mum thought was ”gone off”, while on holiday in the Isle of Wight, one February.  I was ill for 5 days, and was sick and bed bound.  I can remember moaning, and feeling really poorly. The vomiting took me completely by surprise, and I think it’s the sudden, uncontrollable nature of being sick that scares me the most, as when I’m actually being sick or immediately after the event, I feel a lot better.  Unfortunately, this experience, combined with a school food tech lecture about hygiene,  stopped me eating eggs for years.

I also recall catching a stomach bug from a girl at a dance class, age 18. What was bad about this experience was that I knew how I had caught it, and this meant that I became more aware of the norovirus and protecting myself from catching it again. Even though I was only sick three times, and recovered over one night (others had the illness far worse than me, thanks to my good immune system), this did not stop my OCD.

On another occasion, I suddenly vomited at school, and this took me by complete surprise. I had felt unwell, but  did not think I would be sick. Indeed, I’m not good at deciphering my inner feelings, and so it’s hard for me to know if what I’m feeling is hunger, tiredness or true illness. I suspect that this problem, combined with my fear of change and fear of the unknown, has contributed to my fear of illness. Also, hearing adults express fear over illness, made me think illness was a very bad thing, and that they would not want me to be ill, that I was doing something almost punishable by being ill. This feeling was not helped when, on a few times, I was sick on the carpet, because I did not know I was going to be sick. The feeling of having done wrong then sinks in, which makes being ill even worse than it might otherwise be. Also, when I’m ill, I get attention from others, which I don’t like. They worry and express concern, which makes me worry even more. My mum was a very nervous person, and I think I picked up this fear because my mind is so permeable.

With regard to coughs, I am scared of catching them because they make me feel out of control. This fear has got worse as I’ve grown older. Again, people express concern when you cough, like the time I was sent home from primary school because I was coughing too much.  These days, I also worry about waking people up, and this makes me feel bad because I now have enough empathy to worry about some of the impact I might have on other people.

I also have health anxiety, and this is exacerbated when I’m unwell. One of my fears centers around breathing. My dad is an  asthmatic, and since late childhood I’ve worried that I might develop asthma too. I’m now 31 and  asthma free, but I still worry, because I know it’s possible to develop it at any age.  Whenever I feel out of  breath, I worry, which makes it worse and I begin to panic. When I’m ill with a cough, I feel even more out of control, and worry that I will stop breathing.

I’m also not good at dealing with the pain of illness, and this has got worse with age.  Even a slight sore throat can stop me being able to get out or complete my usual routines.  A lack of sleep can make me feel very unwell.

I live by my routines and interests. Illness can interfere with important plans.  As I’ve grown older and become more aware of illness and germs,  this is probably the main reason  why I fear getting coughs and colds. My fear gets worse  when I’m looking forward to something happening, for example an event. I need to protect myself from disease so that I don’t get ill and thereby miss the occasion.  This means I go out less, only eat ”safe” foods, and generally worry more about getting enough sleep and not ”contaminating” myself. When I was  at secondary school and I had less control around avoidance, I would hold my breathe if someone was ill in class. This really affected my concentration, gave me headaches, and later contributed to my health anxiety; I feared that I had damaged my lungs or heart. In my early 20s I had repeated tests at the doctors because of aches in my chest area, which made me really worried that I had heart disease,  but I was told that this was anxiety. When the tests came back clear, and after some help in understanding the nature of anxiety, I began to get the aches far less often. These days I’m better at not catastrophising when I get an ache, and consequently they don’t bother me as much as they used to.

I do think my OCD and health anxiety is connected to my autism. I take information literally, do not like change and surprises, can’t deal with confusion and other people’s  concerns, and want to do the right thing. All this makes me vulnerable to OCD, which gets worse under stress and general change. I have not always had OCD, as it developed in my early childhood and originally was only transient. It did not begin to take over my life or stop me doing activities until I was a teenager, when I became even more aware of the world and what can go wrong. OCD now seems such a part of my life that I expect it will always be there to some extent, but I am getting a bit better at managing it and reasoning with it. I am so used to being anxious that it has become ”my normal”.

Energy

I have always struggled to balance energy. Either I have too much or too little. As a child I tended to have too much. I found it hard to stay still unless I was deeply focused on an activity. I remember such occasions, when I was deeply immersed in a book (Charlotte’s Web, Malory Towers, Little House on the Prairie, a favourite Nature book, books about the Human Body, etc). But I was very excitable – ”enthusiastic” and ”exuberant” are two adjectives that my mum used to describe my character.  She said I was a very energetic child, and that I did not like to sit down and do work, which resulted in many battle of wills.

I do have powers of persistence and singular focus, including a good memory. This payed off when I did my end of school exams, but I have to be interested and motivated. Unfortunately I am not good at multi-tasking or spreading my energy over different channels.

As an adult, it is harder to focus on one thing for hours. I have responsibilities  which mean I have to stop what I’m doing after a certain time to prepare dinner or buy food. Shifting focus is very difficult and exceptionally tiring. As a child, my parents acted as my alarms – ”right’, time to go out, time to brush your teeth…”. I no longer have anyone to put boundaries around my activities, and organising my life on my own is very difficult.

I wake up with a sense of lethargic sluggishness. Particularly in the winter, it takes me a long time to get started on the day. I might not have finished my breakfast until 10:30 am or brushed my teeth until midday. My default activity is reading; this activity suits my need for mono-focus, and I usually read, slowly and methodically,  for 2 hours every morning. It takes energy to stay focused; energy to filter out distractions (I can’t concentrate easily when there is any noise). By lunchtime I often feel very tired. Having to make lunch and think about what I’m eating for dinner uses up energy. Washing up uses up energy. Seeing the kitchen getting progressively more dirty and not knowing where or how to begin, uses up energy.

I always try and get out for a walk midday, and this does me some good. But by 3 pm I’m feeling sluggish and demotivated. I have no idea what to do with my life. Anything outside of my routine uses up energy, but even following my routine is tiring. Just sitting and breathing uses up energy! It seems the only place I can truly relax is deep in dreamland, but as I wake up lethargic, I don’t think my dreams are restorative either.

Thinking, making decisions, moving from A-B, doing anything that involves chopping and changing or organising, wipes me out. Living is very hard, so throw in people, and life gets even harder. Socialising is stimulating; it involves chopping and changing, and unpredictability. I need predictability, I need calm. Once I’m with my support worker, knowing exactly what I’m doing, once I’m in the swing of an activity, I feel more motivated. But the getting ready, the changing, the shifting from one mode to the next, is tiring beyond words.