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.

 

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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.

Introverted or extroverted

Me playing with one of my baby dolls. 

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I am thinking a lot recently about personality. How do I work out what is autism and what is simply me, and how has my personality changed over time.

The title of this piece is deliberately misleading. I think that most people are too complex to be be either completely extroverted or introverted, as things are seldom Either/Or in life. However, that said, it seems self-evidently apparent that people deal with the world in different ways, with some people preferring peace, reflection and the intellect, and others gravitating more towards action, people and adventure. These preferences can, of course, change in the same person over time, as our inborn temperament is sculpted by external events to create our personality over the course of our childhood and adolescence.

Autism is a neurological difference that affects the whole of one’s life, and so it is not surprising that it would also generate experiences that mold personality. My general hunch is that more autistics become introverted than in the general population because of having temperaments that veer towards being highly strung and reactive. It is rare for an autistic to be described as having a calm temperament!. Even if we do not begin life as introverts, it is hard for us to remain extroverted when the world is so overwhelming and people so difficult to understand. These experiences may well drive a significant number of us into the recesses of our own minds – a survival mechanism I will call Introverted Withdrawal.

So how has my personality changed over time?

I did not begin life quietly.  On arrival, I screamed so loudly that the midwife said I certainly had nothing wrong with my lungs!. I was the loudest baby on the ward. However, I did not cry continually. Most of the time I was content, and I turned into a very smiley, giggly baby. I loved to constantly jiggle my legs, and as soon as I could crawl I would not sit still. As a toddler I would often walk off without a care in the world. My favourite game was to run around other children, giggling.  But when I was restrained in my pushchair against my will, I would scream and scream, incredibly loudly.

My mother said my babyhood was  so easy that it encouraged her to have another child.  I was not at all anxious, and was very energetic and cheerful.  This interests me because I had always assumed I was anxious from birth, but this was not the case. So, I wonder, what made me change from a carefree toddler to a child with every fear under the sun?

I was happy to go to nursery school, and  had no separation anxiety at all. The only time I remember being anxious at nursery school was during the Easter Parade. The class of 3 year old’s had to walk past a group of parents, wearing fancy dress. I became very shy and could not walk out of the classroom, so a teacher had to take my hand and walk me past the onlookers.

At nursery school I had one friend in the year below me. We enjoyed hiding under chairs every time a teacher walked past. I called this girl my best friend, but we stopped being friends at primary school as we were in different year groups.

On my first day at primary school I fell over en route to school. On arrival at school, I hid behind my dad’s legs to avoid the teacher’s gaze.  I could not interact with my classmates, so the teachers found 2 older girls to play with me. We played Dungeons every break time, but they eventually lost interest, and I was all alone at break times.

But I tried to interact, I just could not do so successfully. I poked my tongue out at other kids, was overly silly, and did not realise or care  that my annoying behaviour meant that the others did not want to play with me.

It was easier to try and make friends on holiday. At the caravan site in Devon and Stratford Upon Avon I visited every year throughout my childhood, I approached kids on the swings and asked them to be my friend. The kids were isolated, were not in established groups, and they were just glad for someone to play with.  I even chatted to kids on the train, and made very brief friendships. That the friendship might only last half an hour did not bother me. I just enjoyed collecting friends on holiday.

I started to develop anxiety from the age of 4. The anxiety stemmed from a combination  of taking things literally and feeling overwhelmed. Thankfully, I can’t remember this experience much at all, but my mum often regaled the story of when I became terrified of the school fire alarm and refused to go to school by screaming and not setting foot in the classroom. The teachers had no idea what precipitated this, as up to then I had enjoyed going to school. But eventually I explained that I thought the alarm meant the school was actually on fire and everyone would die!. I was fine once it was explained that it was only a practice – somehow I had not understood the initial instructions.

I was frightened of sudden bangs such as fireworks and balloons, and developed into a very cautious child whose phobias increased with age and experience.

However, socially I remained mostly anxiety free. As a child I had no concept of trying to fit in. I was completely myself without effort. I  never thought about whether others were judging me – the thought did not enter my mind. I was never unhappy. In fact, as a child, as long as I wasn’t ill, I was always happy and energetic. It did not bother me that I had no friends in my peer group at school. I did not even have an inkling that I might be different until age 10. Because I was  unabashedly myself, I often behaved a bit inappropriately around the other kids. For example, I once wet myself in class because I thought it was funny , and of course the kids laughed. I had no concept of embarrassment, and so it did not bother me that I had a huge damp patch on my skirt and must have stank of urine. In year 6 I made silly faces and disrupted story time, which meant I often got sent outside. On another occasion, I kept on playing my recorder when all the other kids wanted me to be quiet, but their increasing annoyance just made me laugh. I did not have an off switch, and would carry on doing something over and over if it amused me or satisfied a desire.  Of course, I was afraid of getting told off, and if a teacher was known to be strict I was more likely to behave, and then I would look very quiet and shy. It was almost like there were two sides to my personality!

I finally made my first peer group friend in the last few years of primary.  We were friends on and off, because I could only have one friend and could not share friends. As I had no social anxiety at all,  this friendship was authentic and totally enjoyable. I talked without consciousness or masking. We played and laughed, and I have fond memories of her coming round to my house with her younger brother who was my brother’s friend. The deal was, that when she came to my house, I could play with her alone at school, but when she went round to her other friend’s house, she stopped playing with me. Our friendship was therefore very up and down.  When we were not friends, I played with a girl in my brother’s year, who was later also diagnosed as autistic, or I would amuse myself by running incredibly fast through the playground, with my arms outstretched, feeling the wind against my arms. I  played noisily, sometimes screaming, hardly the stereotype of a reserved introvert.  However, at other times, in class, I would stare out the window daydreaming, or would go excessively quiet. Teachers said I lacked confidence and was emotionally  immature, and confidence raising activities were recommended. It did not help that I was not good at team sports because of poor spatial awareness, and my reaction speed was very slow. I had to be taken out of class for coordination exercises from the age of 9, and this made me  feel singled out, although I did not yet question why I was different or even really saw myself as different. I was just a happy child.

I  became conscious of my difference when I started secondary school. It was at this age that I first started to actively mold my personality. I realised that if I smiled, nodded, kept in line, and was not inappropriate, I might stand a greater chance of being liked. I soon came to be seen as quiet and shy.  I lost friends for the following reasons: too clingy (I followed one girl everywhere), not speaking enough (if I was not being inappropriate and silly, I did not know what to say – and unlike with my primary school friend, talking was now about small talk and being serious and mature), and I could not enter groups.

I started secondary school eager to make friends. I’m not sure that I was extroverted, but I was certainly not introverted either. However,  after experiencing rejection after rejection, I lost faith in making friends and decided that it was not worth the hassle. I was still happy and my difference had not yet affected the way I saw myself. I was not yet completely aware, and I was content to follow my own special interests. I thought that things would just improve of their own accord, over time.

My OCD  escalated as a teenager, but I don’t think I was aware of its significance. It did not make me unhappy, but it made my parents very concerned. In fact, it took me years to even realise I was struggling with anxiety. To me, I was living a normal life, and I just got on with things. Peer pressure and having friends was not in my list of priorities. I was happy to play games of tag as a child, but at secondary no one wanted to play running games, and the new expectation to make small talk was lost on me. I was happy just to go home on my own and do my own thing.

One thing I did find out as a teen is that I don’t have stage fright.  This surprised me at the time because I had never been given a major part in a school play, and when I was on stage at primary in the background to school productions, I tended to feel overwhelmed. However, I had been a member of the primary school choir, and I loved to sing as a child.  As a teen, I joined a  Friday afternoon dance group because of my Kate Winslet interest. I even took part in an amateur dramatics production of Much Ado About Nothing, all because Kate Winslet’s sister had appeared in the previous year’s play. I performed as an Extra in front of hundreds of people, and was not remotely scared.  The difficulty with imagining different scenarios, tendency toward logic, and not caring too much about making an impression (at least at this age), which are probably connected to my autism, actually helped me go on stage without fear.

In my 20s, I rekindled a ”get up and go” side to my personality that had become submerged under worsening OCD. After my diagnosis and once I had received some help with my OCD,  I  initiated several volunteering roles. It helped that all my needs were looked after by my parents, so I did not need to worry about cooking or looking after myself. I  was not as aware as I am now of what made me stressed, and I  decided that I wanted to overcome my fears and challenge myself. However, over time I lost interest, and realised that I was masking who I really was, which was making me stressed and irritable. I think it was this realisation that led to my Introverted Withdrawal . Quite simply, I did not have the energy anymore to fake sociability when it made me feel very tense, and was not at all natural. My awareness developed in my late teens, and with increasing awareness, it became more and more stressful to be around people. Lately, and particularly now I live semi independently,  I have decided to pull down the hatches and retire from the world, just in order to protect my limited store of energy. I am no longer motivated to meet people if the price of that interaction is a loss of my true self.  This is the price of awareness: increased introversion. There is a cyclical quality to this, as the introversion encourages more awareness, and the awareness encourages the introversion. I am spending more and more time reading, and only rarely go out into the world.

I have always been very focused on my interests. My mum used to say that I will only work hard if I am interested, and this is very true. I often messed around as a kid because I was asked to do things that bored me. But when I was motivated, I surprised people with my output. An example of this is when I studied the human body in year 6. For once I knuckled down and listened to the teacher because I was absolutely fascinated by the body and all the processes. I took voluminous notes; everything the teacher said was noted down. I went from no focus to complete focus, and this still happens today.  If the interest is there, I will put effort in, if I am not interested, all I experience is frustration. At least as an adult I can follow my interests without so much interruption, and this might be encouraging the introverted side of my personality.

When I’ve had hardly any sleep

Last night was a bad one. I just could not get to sleep. I lay there waiting  for sleep to come, but with no success. My throat, as if wanting to make matters worse, felt slightly scratchy.

I have no idea why I had such a hard time falling asleep last night. Maybe it was the weather? After a cold spell, it has yo yo’ed back to being mild and overcast, and this sort of weather  is not agreeable to my system. Maybe it was caused by eating spicy food last night and too many sprouts, which can result in some mild discomfort and indigestion. For some reason, my body was not allowing me to rest and was going into overdrive.

I finally fell asleep but awoke abruptly at  4 am from an intense and nightmarish dream. I was walking beneath the dark clouds of a thunderstorm, and there was zigzag lightening every couple of seconds. I am phobic of thunderstorms, and when I faded out of the dream to the sound of a light switch being turned on (the joys of being a light sleeper!), my heart was pounding, my hands were drenched in sweat, and I felt hot and feverish with a pounding headache. The only way I could calm my overactive nervous system was to sit up in bed and write a few lines in my journal about what was happening. As I did this, I cooled down and stopped sweating, although it took a little while for the palpitations to die down.

I was restless the rest of the night, feeling tense and worried, and my fingers were only half consciously pushed firmly into my ears, which made one of my ears feel sore, and contributed to my headache and a sense of fullness in both ears.

I tried to get some more rest, and stayed in bed until 9 am, but I only dozed off briefly, and this morning I felt extremely tired with a slightly sore throat, a leaden feel across my head, and a feeling of slight indigestion resulting in hiccups (this always happens when I’m extremely tired). Eating breakfast and drinking coffee did not help much, if anything it made me feel more tired. When I’m this tired I can’t function well at all, but I thought I could at least write this experience down on my blog. Thankfully I do not have these experiences that often, although I am always slightly tired. I was in fact sleeping pretty well by my standards lately, and I hope this is only a blip. I am feeling annoyed that I can’t follow my reading routine today,  but hopefully I will still be able to buy food from the shops later.

My autism gets significantly more disabling  when I’m tired as my functioning is impaired. A lack of sleep for me is not just a slight frustrating hindrance, it is a paralysing impediment.

I have spent the morning sleeping, or rather lying there nursing a headache. It’s now 1:36 pm, and I am trying to summon up the energy to walk to the local Co-op to get Heinz tomato soup. Too tired for any lunchtime cooking.

A day in my life

Friday the 4th January 2019

I woke up at around 7:45 am but lay in bed for a good half an hour longer, not wanting to get out from under my warm blanket.  I feel sluggish in the morning. Bed feels safe and comforting, the outside world over stimulating and stressful. Eventually I got out of bed at 8:15 am, after telling myself at 8:10 am that I would allow myself 5 more minutes. I lay facing the clock, psyching myself up for the task of getting out of bed.

I then turned on the computer. I checked Facebook and twitter, and then the weather. I need to know what the weather is going to be like before I venture out. The computer’s light made me feel more awake. I find moving from one activity to the next difficult, so I have to mentally set a time frame. I  told myself I would turn the computer off at 8:30 am, but I was still staring at the screen at 8:33 am. I then eventually decisively turned the machine off, and got dressed.  Dressing is made  easier by alternating between 3 garments. All my other clothes hardly ever get worn as I only wear them when I am meeting people outside of my immediate family. They’re my ”social clothes”, and they are the clothes that I want important others to see me in, because the 3 outfits I usually wear are not totally perfect in my eyes, although they are very comfortable and feel safe as they are so familiar: two jogging bottoms and a  roomy pair of grey jeans, and three fleeces that I’ve had for over 6 years.

I finally had breakfast at around 9:30 am. Today I made a salty cocoa pureed chestnut porridge. I boiled some milk, added oats and cooked this for 5 minutes. I then added a tablespoon of Merchant Gourmet pureed chestnut, a teaspoon of maple syrup and vanilla extract, and the star ingredient… MARMITE!! Yes, call me mad. The recipe stipulated salt but I don’t buy salt as I like to be healthy and am not keen on overly salty food. But I do like marmite, and just a little goes a long way. So I added half a teaspoon. I gave the mixture a thorough mix and poured it into my brand new Katie Alice breakfast bowl. I have to say that the porridge was delicious, and I ate it with a tall latte mugful of gingerbread flavoured coffee from the Little’s company (well worth checking out).

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I then washed up and brushed my teeth before settling down to read at 10:30 am. I switched on my laptop, put my headphones on, and went onto the Simply Noise site, which plays white noise to block out distractions. I carried on reading The Flavour Thesaurus, a book which I bought myself for Christmas.

At 12:30, I made my lunch. Today I cooked small pasta shapes for 6 minutes, which I mixed with half a can of sweetcorn, a small can of tuna, finely chopped spring onion, and a teaspoon of mayonnaise. I ate this  in my new pasta bowl that I purchased from Cath Kidson; the one with a painted flower and deer design. After this I made myself a cup of Yorkshire tea, drunk from my vintage ”builder’s tea” mug, and ate a Nak’d company cocoa, date and nut bar with a slab of mature cheddar cheese.

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After washing up, I wrote down my shopping list. I then changed out of my rough, lounging round the house clothes (a scruffy old blue jumper and jeans), into my regular outdoor clothes: today a blue fleece and  the grey roomy jeans. I took my shopping trolley and ventured out. First stop the library to return and renew some  cookery books. Then I  popped into Lakeland and Dyas to ask if they had any espresso machines. They did but the machines were out of my price range. I would like to get a basic espresso machine as I have recently developed a liking for and interest in coffee in all its guises. I will look again elsewhere – maybe Tesco or Sainsbury sell cheaper ones?

I finished up at Waitrose, where I intended to buy my food. However, my OCD was triggered by someone repetitively coughing. This made me very stressed, and so I could not buy everything on my list as I needed to get out as quickly as possible. I managed to get my dinner for tonight (a sweet potato), but will have to go back tomorrow to buy the food for Saturday and Sunday’s meal.

Going out is stressful for other reasons, beside the prospect of people coughing and sneezing (yuk, germs, gross). Firstly there are smokers. Smoking is a disgusting habit that fills the air with carcinogenic particles that I really don’t want to breathe in. I’ve always been sensitive to the smell of smoke (it stinks!), but since my mum (a non smoker) died from lung cancer in 2016, I’ve become even more sensitive to cigarette smoke. Not only does it have an offensive smell, but every time I smell it I’m reminded of her cruel death and the fact that I really don’t want to get such an awful disease. I want to breathe clean air, and I feel contaminated by smoke. So every time I see a smoker, I cross the road. If I can’t avoid them, I hold my breathe or put my hand over my nose.

Secondly, there are those horrible vaporisers. The smell is not toxic like cigarette smoke, but it’s sickly in the most nauseating sense, so again, I hold my breath.

Thirdly, cars. When it gets dark, their lights beam like flood lights, and it makes me feel super stressed and even angry. Also cars are noisy and unpredictable. I  need to use all my  energy to stay alert and avoid collisions.

So I arrived home feeling contaminated and over stimulated. I decided to give myself some medicine: a slice of toast spread with almond butter and Meridian cranberry spread (all natural, no refined sugars). This combination was DELICIOUS!. I had it with a strong mug of tea, and felt so much better. I then walked to the familiar territory of my dad’s house, where I am writing this now. Very soon, at just after 5 pm, I will make my dinner. Tonight it will be mashed sweet potato mixed with pureed chestnut, with smoked salmon, egg and peas (a Merchant Gourmet recipe).

Then my evening routine: 7:30 pm, teeth and wash. 8 pm computer. 9:45 pm, lying in bed. 10: 40 pm precise, bed.  If this order is not followed, I feel very stressed.

 

 

 

Who am I?

I thought I would write down, in no particular order,  how I deal with the world, and my thoughts and perceptions. It can be hard to disentangle what is autism from what is simply me, and I am not going to try and fit this  narrative into any schema. Instead I will just write in stream of consciousness style, and then  people can make of what follows as they like (hell, I’m still trying to work it out myself!).

My life revolves around my interests. It’s as simple as that. I need life to be ordered, predictable, perfect, as it should be according to my interests. My interests are my religion. What interests?

Cooking.  I spend a lot of time thinking about food, which has to be eaten in peaceful surroundings so that I can focus on each perfect sensation. What will I eat today? As I make  most of my meals from scratch, this is no simple matter. I spend colossal amounts of time searching recipes, categorising them ( pininterest has lately become my new hobby), photographing and logging what I have already eaten,  writing recipes down in my various  recipe note books,  worrying about the recipes I still need to try, and constantly feeling as though I am running out of time.

Time. This menace constantly surrounds me. The feeling that I have so many things to do, so much to complete, but never enough time to reach perfection. Don’t get me wrong, I know perfection is humanly impossible, but my brain still craves order, and so I feel constant pressure and a sense that things are running out of control. Having synaesthesia adds to this issue, as I see time in a textured, real, coloured way that is hard to describe. I love my synaesthesia in the sense that it brings order, but it also constantly reminds me that things are changing. I will worry about events that are taking place in two or even three years time, if they’re important to me and threaten to change my routine.

Another interest is clothes. I enjoy wearing clothes that look nice (I have a strong aesthetic sense, and love looking at beautiful objects and colours), and feeling that I have got at least one thing right in my life. I enjoy feeling that other people might like my clothes and judge me favorably, particularly as I feel really pleased  that I have finally worked out my size. Clothes add to my sense of identity, by making me feel that I  belong to a particular ”genre” (bohemian or colourful). Clothes also add to my sense of order. I know exactly what clothes I have in my wardrobe, and they are all treated with tender loving care. Yet I obsess about my clothes. I can’t bear the thought that they will get damaged, particularly the newest clothes, which can only be worn in a particular order. When I’m not seeing people, I will alternate between a few very old fleeces,  three jogging bottoms, and one or two pairs of jeans, in the colder months. When I see people I will wear my newest clothes, the clothes that make me feel competent and well dressed.  But when I put them on, I worry that I might damage the zip or that a seam will come loose; even a small blemish will make me feel that the item has been ”messed up” and is no longer the same. I obsessively go over the contents of my wardrobe in my mind, worrying about what other clothes I might need to buy as insurance policy in case the clothes I do have get tarnished. Currently I’m debating whether or not to get another pair of jogging bottoms to add to the two ”perfect” ones I currently have, because three is a good, complete number. But the other part of me worries about spending too much money, and says that I should wear and appreciate what I have, and spend my money on other things.

Money. I hate spending it apart from on things that add to my sense of completeness, but even then I worry  because the purchase negates something else I could have bought instead. I mainly spend money  on my three interests: food, books, and clothes. Recently I have been trying to spend it on other things, notably some new cups and dishes. I am now obsessing about my cup collection, and whether or not I can justify adding to it, particularly as I find it so hard to even use new things. I worry that my money will run out – the pressure of time again, and the fear of impending loss of meaning, loss of anchoring interest memorabilia, and consequent chaos.

Then there are books. I need to read as much as I need to breathe.  My reading routine takes place most mornings (apart from when I’m between books and have planned a non reading space, such as today), and I don’t feel complete until I’ve read for two hours minimum. I have so much to read; what if there is not enough time to read everything? What order shall I read my books in? Every book I read entails a loss – a book I could be reading. And no-one is there to tell me if I’ve got it right as only I can decide what to read. I mainly read philosophy books or books that help me make sense of the world, particularly the sense that everything is chaotic and incredibly scary.

I’m scared. All the time. I’m worried about my breathing, my health (does that pain mean something terminal?),uncertainty, noise, germs, what will happen next, accidents… But this fear is invisible – no-one can see it except in the occasions when a phobia is triggered (dogs, for example), and I react by running or whimpering. The fear is internal. I can be smiling and even laughing, but fear is there just beneath the surface. I can’t relax fully, ever, as even when I feel relatively  relaxed, I know that the perfection won’t last. Indeed, precisely because I know it won’t last, it feels almost wrong to experience it, as too good to be true. When will the next noise intrude, threatening to distract my calm.

Noise is a major source of anxiety. I need to focus intensely on my interests in order to feel a sense of order and that life means something , but noise interrupts my thought process, is invasive and discomfiting. This does not mean I can’t deal with all noise, as if the noise is predictable, occurs in a space where it’s expected, and particularly if I control the noise source and can escape easily if it gets too much, I can cope. The emphasis here is on unpredictable noise , particularly noise that is generated by other people and that offers  no escape. I then feel imprisoned in a cage, and I can’t block the noise out, which means focusing becomes increasingly difficult, resulting in adrenaline surges and consequent tension. This feeling of being trapped, with resulting anger and powerlessness, is most acute when the noise occurs at home, which is my space. I am very territorial – my space has to be completely under my control, and that includes what sensations I experience.

Noise affects my sleep. I rarely sleep deeply enough to feel completely refreshed because of noise and light intrusion. I guard sleep so zealously because even a slight reduction in sleep makes my anxiety levels go super high, and it is 10 times harder to focus and achieve my life goals,  then it usually is, and even on a good day I struggle. Consequently I need to go to bed at more or less the exact same time every night, and if I don’t keep to a routine (this also involves eating my meals within the same time frame), I feel very disorganised and chaotic.

I struggle to know what order to do things in. I love order (I keep saying that!), but find it so hard to make things as neat as I would like them. I have a few super intense interests that all need tending to, but I feel that by attending to one, the other gets neglected, which makes me stressed. Even if I write things down, I can still feel disorganised and worried because there is so much to think about!. It can be hard for me to move from one activity to the next, particularly if the former activity required intense focus.

The world outside my home is incredibly overwhelming. Crossing roads feels as though I am staring death head on, as I  literally feel  that at any moment a car might knock me over.  Cars come at me suddenly,  they are noisy, and  incredibly distracting, as well as smelly. This is also why my home needs to be a silent sanctuary, and a place where I feel relatively safe and can recharge.

In the morning I’m a slow riser unless I know precisely where I’m heading (such as when I am on a mission to get somewhere at a particular time because my strong interests motivate me). Unless a strong interest is doing the pushing, it can take me at least an hour before I can slowly face the world. I am most able to get things done within a small mid morning window, and by the afternoon I just don’t have enough energy to get much done.

I can only focus on one interest at a time. When I’m in the swing of complete focus (such as I am now, writing this), I have to complete it, and can think about nothing else until it has been finished. This is why, when I am reading a complex book, I cannot do any tidying until I have finished the book, because all my mental space is taken up with getting the book finished. Even when I’m not reading the book, I am still thinking about the book and worrying about completing it within a certain time frame.

My interests come before other people.  Don’t get me wrong, I do enjoy meeting particular individuals one to one  for circumscribed periods of time. For example, I look forward to seeing my support worker each week because I enjoy talking to her about my life and interests. She will listen to me, because it’s her job to support me and follow my lead. This element of control makes the relationship far less stressful than a conventional friendship. I can be my best self in this environment, because it plays to my strengths, and so my social difficulties are less apparent. I have learnt over the years that it’s important to reciprocate, although this does not come naturally to me, because I just love talking so much about my interests. However, I do genuinely enjoy collecting information about people (this adds to my sense of order), and so any reciprocity I do display with my support worker, is genuine (hard though it can be to listen when I’m dying to talk!). I try my hardest to listen, and my listening skills are something I’m motivated to work on because I’m genuinely curious about other people. However, I have an internal people  jar, that gets full quite quickly. This means that, as much as I might want to listen to another person, the jar can flow with too much information, meaning that I zone out. This frustrates me, and I will then want to ask them again what they just said, or alternatively worry that I’ve missed out on information that might add to my sense of order on the people front.

Despite the fact that it can appear that I have good social skills, I really struggle to navigate relationships other than professional ones. Friendship is something I find hard to understand, and organising social meetings or investing in the social world is not my top priority in life because it cannot be ordered, understood or controlled in the way my interests can. Meeting a  person one to one in a quiet tea room is manageable, but still comes second to my interests.

Socialising is particularly hard when I feel the need to mask by making eye contact, or when the interaction is superficial and small talk based with no job role to provide structure and a welcome distraction from the interaction. Trying to remember how to make the right amount of eye contact or what to say, is incredibly distracting (the eyes and face can be interesting to look at on their own, but I can’t juggle attending to them and listening at the same time). I might appear social in these situations, but the inner tension is constantly there, even if others can’t see it beneath the mask.  With my support worker or a select few autistic people who I get on with, I don’t make much eye contact, and the eye contact I do make is on my terms, and this means the interaction is a bit easier to navigate.

In unstructured group situations, with many people competing for interaction, I feel quite uneasy.  I can appear a lot more reserved and quiet than I might be one to one, and if I do make an effort and talk a lot, I feel a sense of isolation and competition from others.  I often feel left out and that I can’t keep up, and there’s a sense of being overwhelmed. Even one to one interaction can go too fast at times, resulting in the constant danger of me switching off and losing track of what the person has said, much to my annoyance. Having to juggle several conversations is  very difficult and largely pointless when I could be at home reading a book that does not move or compete with other stimuli.

So why do I bother to go to groups? Well, I’m not sure, but I need to feel that I belong, and without any human contact I wouldn’t have any identity  to show to the world. Why buy all those beautiful clothes if no one gets to see them? That might look vain (maybe I am!), but I enjoy showing off my clothes, and hoping that my identity is validated through the gaze of others. I can think (who knows what they think in reality) that they see me as I see myself or imagine myself to look, and I’m constantly experimenting with my identity via clothes. Then there’s the curiosity factor, as already mentioned. The need to find out about people and the world.  Finally I want to make an impact, and you can only really make a mark on the world in conjunction with other people.

But I struggle to reciprocate outside of professional relationships (where the reciprocity is, in any case, on my terms). I can be very interested in someone and then lose interest  once I have  finished categorising them, and then I can easily move on from them back to my interests. Conversely, if very interested in someone and heavily invested in the relationship, I cannot imagine not being able to see them, and the thought makes me feel very anxious as they provide me with an anchor, routine and a sense  of meaning. Without wanting to sound impersonal, they are like a trusted piece of beautiful furniture that I care about and want to protect from harm.

In a sense, maybe that’s the crux of the matter; namely, that I treat people a bit like favoured books. People are, quite literally, like walking books. You can ask them questions, and gather information from them, and some people even look like works of art. The favoured few (if you enter that category, know that you are the elect!) are very special. They are like a guiding light in my scary universe, and are a rock to lean on, providing security and calm.  Support workers sometimes enter this category, and I feel relatively at ease with them, which means I can experience a positive social interaction that I sometimes even enjoy! However, most people don’t make the elect, and are there as and when I need them, but are pretty disposable when I’ve exhausted their use value. That might sound harsh, but people are vendors of information, and that’s the main reason why I interact, other than to feel a part of the world. Once they are no longer interesting in terms of providing psychological, philosophical or human knowledge, I find it harder to enjoy their company. The few friends that remain in my life do so because I can endure their company (although they might not be in the elect category), and they provide a source of routine, familiarity, and source of belonging and validation. Although my interests come first, I do still need a small amount of human contact, just in order to talk, if nothing else ( I am very verbal, and sometimes just talk to a blank wall!).

People move, they never stay in one place, they can be hard to work out, and I lack the cementing glue that seems to bind people together. I don’t understand why most people place so much value on friends and connections when I prefer to read books and categorise the world. Even though I appear social, I am just going through the motions without feeling connected. I don’t know what it feels like to be connected, and it’s so hard to explain because what I’m lacking is intangible. I can do the one to one social act pretty well, at least on the surface, but inside I am full of tension because it feels unnatural and mechanical, even though I might be interested in the person to a varying degree. So what other people see and what is really happening are not the same, and no matter how social  and even reciprocal I can appear, I just can’t connect to people reciprocally in the genuine, inner sense that most people seem to do. People make me feel uncertain and out of control, whereas my interests provide me with relative calm and order.

There is so much more I could write, but I will save that for later. Crucially, my life revolves around routine, order, completion,  learning, intellectual stimulation, and need for a low arousal environment with minimal distractions. Socialising  and going out in general is hard work, and can only be done under certain conditions: a motivating interest, routine, plans, and if there is a clear structure. Normally I prefer to stay at home with a book.

 

 

 

 

 

Simon Baron Cohen’s systematising quotient (SQ)

Following on from completing the AQ, I have decided to take the SQ. I have taken the SQ before, and got quite a low score for an autistic, which means that I am apparently not a genius at systematising (but you’re autistic, I hear the follower of BC say, you should be excellent at understanding systems; well there goes the stereotype!). This is not to say that I can’t systematise, just that I am not good at or interested in the areas that the STEM (Science, Technology , Economics and Maths) obsessed Simon celebrates as being a sine qua non of the prototypical autistic ”genius”.

Here goes:

1) I find it very easy to use train timetables, even if this involves several connections.

Slightly agree.

I am very familiar with trains because my parents never owned a car, and I grew up using trains and learnt how to independently travel on them (at least for short distances) without much trouble on the technical front. The train timetables online are very easy to use because you just type in your destination and the time you are leaving, and then you are clearly shown all the potential connections, changes and the station stops.

2) I like music or book shops because they are clearly organised.

Slightly agree.

I enjoy visiting book shops such as Waterstones, and the tidy, neat array of books, all in their designated subject areas, is calming. I am not very good at keeping things tidy at home, but I like well ordered spaces that have a clear layout. I like the fact that in a book shop all the philosophy books are in their own corner so that I don’t have to spend ages searching for them.

3) I would not enjoy organising events e.g. fundraising evenings, fetes, conferences

Strongly agree.

Just thinking about all the factors going into the planning is enough to send my head into a tailspin!. I would not know where to begin or how to prioritise the planning without  a great deal of assistance from others.

I am not sure why this is in the SQ. Many autistic people struggle with planning and organising as part of our cognitive differences, and so I would imagine that I am not the only one who would find organising a conference to be exceptionally stressful.

4) When I read something, I always notice whether it is grammatically correct

Slightly agree. 

I am generally aware of sloppy grammar, but I am not a grammar pedant, and the grammatical error would have to be very significant for my attention to be drawn to it. I sway between sightly agree and slightly disagree on this one.

5)  I find myself categorising people into types (in my own mind).

Strongly agree. 

I am very interested in psychology and philosophy, and I have always enjoyed categorising people, based on either appearance or perceived character.

6) I find it difficult to read and understand maps

Slightly agree. 

I am not sure what type of map this question refers to. I am not good at reading conventional maps because of my spatial awareness and visual perception difficulties, but I am good at following google maps because it is three dimensional, concrete and simulates reality.

Simon Baron Cohen is clearly not taking into account that many autistic people have visual spatial dyscalculia or dyspraxic traits, which by definition make it hard to read maps.

7)  When I look at a mountain, I think about how precisely it was formed.

Slightly disagree. 

However, I am interested in how natural systems work and how they are formed, but am not particularly interested in geology, and this is not the first question that pops into my mind when I peruse a mountain.

I waver between slightly disagree and slightly agree on this question.

8)  I am not interested in the details of exchange rates, interest rates, stocks and shares.

Strongly  agree.

Numbers and their systems are incomprehensible to me, and I find such subjects incredibly dull and uninteresting.

This is a very stereotypical question, as BC is assuming that autism is very closely aligned with an aptitude for grasping this sort of data, but we’re all individuals. I would much prefer to be reading a philosophy book or finding out about a famous person’s life.

9)  If I were buying a car, I would want to obtain specific information about its engine capacity.

Slightly disagree.

I am not at all interested in cars, and I will probably never own one. In the hypothetical situation of me purchasing a car, I would imagine that I would find it very stressful and would need a lot of advice because I am not at all interested in technical information.

10)  I find it difficult to learn how to programme video recorders

Slightly agree 

Learning practical skills does not come naturally  to me, although I will readily learn the skill once I have had enough instruction, support, repetition and practice.

11)   When I like something I like to collect a lot of different examples of that type of object, so I can see how they differ from each other.

Strongly agree

I am constantly collecting and comparing different recipes and clothing. I take photos of all the different foods I try in order to put them into categories, and this gives me a lot of satisfaction because I enjoy creating structures and order.

12)   When I learn a language, I become intrigued by its grammatical rules.

Slightly disagree

I am much more interested in the words of the language, and how the words sound or what they mean than the grammar, which I find rather boring and dull.

13)  I like to know how committees are structured in terms of who the different committee members represent or what their functions are.

Slightly disagree.

I am much more interested in what the Committee is discussing and the outcomes agreed than the minutiae of Committee roles.

14) If I had a collection (e.g. CDs, coins, stamps), it would be highly organised

Slightly agree

Although I struggle with general organisation and keeping things tidy, in very specific areas that are associated with my specific interests (clothing and recipes, for example), I have a clear system, albeit one that is idiosyncratic to me. I only wear certain clothes on particular days or months, and all my recipes and notes are now ordered in their respective books (although I needed initial support to get this system underway, as prior to this  all my recipes were chaotically scattered).

15)  I find it difficult to understand instruction manuals for putting appliances together.

Strongly agree

I need a lot of support following instruction manuals because of my visual perception and spatial  difficulties, although I am getting better at following them with practice.

16) When I look at a building, I am curious about the precise way it was constructed

Slightly disagree.

I admire aesthetically pleasing architecture, but my thoughts rarely consider the details of how the building was created.  I might be interested, though, in finding out about the cultural and artistic history behind certain buildings.

17)  I am not interested in understanding how wireless communication works (e.g. mobile phones).

Slightly agree. 

Technology is not one of my interests.

18)  When travelling by train, I often wonder exactly how the rail networks are coordinated.

Strongly disagree.

This is one of the most stereotypical , male biased questions asked so far, as autistic people are often assumed to be train spotting anoraks. It needs repeating: we are all different (and there will be many men who have never been interested in trains, despite the way society coerces young boys into liking trains and their accoutrements.)

19)  I enjoy looking through catalogues of products to see the details of each product and how it compares to others.

Slightly agree 

When younger, in particular, I enjoyed comparing kid’s toys and accessories during my strong interest in young children. I read Argos catalogues in great detail. These days, I enjoy comparing food brands in supermarket magazines.

20 )   Whenever I run out of something at home, I always add it to a shopping list.

Strongly agree.

I nearly always have a list with me when I go shopping, and rarely buy spontaneously.

21)  I know, with reasonable accuracy, how much money has come in and gone out of my bank account this month

Strongly disagree 

I never check my bank balance. My dad looks after my money because I have dyscalculia.

22)  When I was young I did not enjoy collecting sets of things e.g. stickers, football cards etc.

Slightly disagree

Why does BC not include dolls or stereotypically ”feminine” gendered objects in his examples?. I’ve certainly never been interested in football.

If this includes collecting DVDs associated with a favored movie star (in my case Kate Winslet), then I would agree. However,  I’ve never been into collecting things like stamps or stickers, so I’m not sure, and sometimes respond with slightly agree.

23) I am interested in my family tree and in understanding how everyone is related to each other in the family

Slightly agree.

But surely most people are at least slightly interested in their roots?. This is not one of my major interests, though.

24)   When I learn about historical events, I do not focus on exact dates.

Slightly disagree.

When I was very interested in the Titanic disaster and Kate Winslet, dates were vitally important. I am less interested in exact dates these days, so sometimes answer with slightly agree.

25)  I find it easy to grasp exactly how odds work in betting.

Strongly disagree. 

I have dyscalculia so this would be excruciatingly difficult. I am also not remotely interested in betting.

26)  I do not enjoy games that involve a high degree of strategy (e.g. chess, Risk, Games Workshop).

Strongly agree.

My dyscalculia means I struggle with understanding spatial relationships and problem solving that involves picturing scenarios.

27)   When I learn about a new category I like to go into detail to understand the small differences between different members of that category.

Slightly agree.

When I’m very interested in a topic, I have to absorb every single detail, and I get anxious if I feel I might have missed a detail or not fully understood a small fact.

28) I do not find it distressing if people who live with me upset my routines

Strongly disagree 

I can’t live without my routines and I live in constant fear that they will be broken by other people.

29)  When I look at an animal, I like to know the precise species it belongs to.

Slightly disagree.

But then animals are not one of my current ”special” interests, although that could change.

30) I can remember large amounts of information about a topic that interests me e.g. flags of the world, airline logos

Strongly agree.

My parents were astounded by how much I knew about the actress Kate Winslet and child development. I currently know volumes about nutrition, various philosophies and complex ideas.

31)  At home, I do not carefully file all important documents e.g. guarantees, insurance policies

Slightly agree.

I often just leave them unfiled because the task of organising them does not capture my interest and is too tiring.

BC again fails to appreciate that many autistics struggle with organisation skills.

32)   I am fascinated by how machines work.

Slightly disagree.

But is BC just referring to man made machines such as computers? Or does he also include systems such as the human body? . I was very interested in the human body as a child so I’m not sure whether my answer should be slightly agree.

33)  When I look at a piece of furniture, I do not notice the details of how it was constructed.

Strongly agree

Again, because furniture is not one of my special interests. BC seems to conveniently forget that autistics are usually hyper focused on one or two specialist topics. I might not be interested in how furniture is constructed, but I know a lot about the mechanics of human nutrition.

34)  I know very little about the different stages of the legislation process in my country.

Strongly agree.

But this is currently not one of my ”special” interests!

35)  I do not tend to watch science documentaries on television or read articles about science and nature.

Strongly disagree.

I am quite interested in science, and I enjoy reading popular science articles and finding out facts about plants and nutrition.

36)  If someone stops to ask me the way, I’d be able to give directions to any part of my home town.

Slightly disagree.

I can struggle to explain how to get from A to B unless I am really familiar with the route.

37)  When I look at a painting, I do not usually think about the technique involved in making it.

Slightly agree.

I am slightly interested in technique if I were to read about it in a book, but usually when I’m studying a work of art in a gallery, I am more interested in just taking in the colours and images.

38) I prefer social interactions that are structured around a clear activity, e.g. a hobby

Strongly agree.

I mainly socialise at the autism groups I attend, and I prefer structured one to one chats that have a clear start and finish time and purpose.

39)  I do not always check off receipts etc. against my bank statement

Strongly agree.

I have dyscalulia or ”number blindness”.

40)  I am not interested in how the government is organised into different ministries and departments.

Slightly agree.

I am much more interested in specific polices and their philosophical ramifications than the minutiae of bureaucracy.

41)  I am interested in knowing the path a river takes from its source to the sea.

Slightly disagree.

42)   I have a large collection e.g. of books, CDs, videos etc.

Strongly agree.

And clothes and recipes, Simon!

43)  If there was a problem with the electrical wiring in my home, I’d be able to fix it myself

Strongly disagree.

I would need someone else to do it for me and would be very worried about being able to trust them and whether or not they would do a good job. I know nothing about electrical wiring!

44) My clothes are not carefully organised into different types in my wardrobe

Slightly disagree.

This  was not the case in the past, but currently clothes are one of my major preoccupations so I have them  organised according to whether or not they are rough indoor clothes, rough outdoor clothes and new and clean ”social/work” clothes.

45)  I rarely read articles or webpages about new technology

Strongly agree.

I am not at all interested in gadgets.

46)  I can easily visualise how the motorways in my region link up.

Strongly disagree.

I have no interest in roads or cars. Give me a green park any day!

47) When an election is being held, I am not interested in the results for each constituency

Slightly agree.

In this case the bigger picture is certainly more captivating.

48)  I do not particularly enjoy learning about facts and figures in history.

Strongly disagree

I have always enjoyed learning about historical facts, but also historical trends and how the facts link up into wider stories or pictures.

49) I do not tend to remember people’s birthdays (in terms of which day and month this falls)

Slightly disagree.

But I’m not amazingly good at remembering exact birth dates unless I am very close to the person. I knew the dates for Kate Winslet’s family, though, because Winslet was one of my major preoccupations for over a decade. I veer between slightly disagree and slightly agree.

50)  When I am walking in the country, I am curious about how the various kinds of trees differ.

Slightly disagree.

I am interested in the natural world, though, and am currently learning about a few of my favourite flowers. But when walking in the country, I  am not thinking too deeply about how trees differ. Instead I am just trying to soak in the landscape.  If Cohen had put flowers, I might have answered with slightly agree, but this was not the case in the past as my interests have changed.

51)  I find it difficult to understand information the bank sends me on different investment and saving systems.

Strongly agree.

52)  If I were buying a camera, I would not look carefully into the quality of the lens.

Slightly agree.

I would need support from the shop assistant to help me understand what camera would be best suited to my needs.

53) If I were buying a computer, I would want to know exact details about its hard drive capacity and processor speed

Slightly disagree.

Again, I would need support to help me understand all the technical information.

54)  I do not read legal documents very carefully.

Slightly agree.

I think they are boring and overwhelming as the information can be hard for me to understand.

55)  When I get to the checkout at a supermarket I pack different categories of goods into separate bags.

Slightly disagree.

56)  I do not follow any particular system when I’m cleaning at home.

Slightly agree

Cleaning is not something that is easy for me as it takes a lot of energy and the time could be better spent on  my interests. I’m rather haphazard with my cleaning.

57) I do not enjoy in-depth political discussions

Slightly disagree.

But I obviously prefer it if the person shares my political ideals, and I would not be happy if they were arguing for benefit cuts or other austerity measures. I might be so overwhelmed that I would leave the room!

58) I am not very meticulous when I carry out D.I.Y or home improvements

Slightly agree.

But I’d need a lot of support because I can’t do D.I.Y anyway due to my spatial and visual perception difficulties.

59)  I would not enjoy planning a business from scratch to completion.

Strongly agree.

As mentioned, planning and organising can be very difficult and stressful for many autistics, including myself, and I would need a lot of support if I ever decided to start a business.

60)  If I were buying a stereo, I would want to know about its precise technical features.

Slightly disagree. 

I would want a good stereo at a reasonable price, but would need a lot of support to make a good decision.

61) I tend to keep things that other people might throw away, in case they might be useful for something in the future

Strongly agree.

I am getting a lot better at this since my support worker helped me with organisation, but I keep a lot of clutter as I’m not sure if I will ever need it, and I get attached to belongings.

62) I avoid situations which I can not control

Strongly agree.

I am a ”control freak” par excellence!

63) I do not care to know the names of the plants I see

Slightly disagree.

I have recently become quite interested in plant names.

64) When I hear the weather forecast, I am not very interested in the meteorological patterns

Slightly agree. 

I check the weather every day as I like to know what to expect, but I am not that interested in the fine details of atmospheric pressure, etc.

65)  It does not bother me if things in the house are not in their proper place.

Slightly disagree.

I like to know where things are located, and I try and ensure that items are grouped together, although I can struggle to keep on top of organisation, which means the house gets more messy than I feel comfortable with.

66) In maths, I am intrigued by the rules and patterns governing numbers

Strongly disagree.

67)  I find it difficult to learn my way around a new city.

Slightly agree.

In the past I would have put strongly agree, but google virtual maps has made the planning involved so much easier, and so sometimes I am inclined to put slightly disagree.

68) I could list my favourite 10 books, recalling titles and authors’ names from memory.

Slightly agree. 

But it might take me a bit of time to drag the information out of my memory, particularly if I’m tired or stressed.

69)  When I read the newspaper, I am drawn to tables of information, such as football league scores or stock market indices.

Slightly disagree.

70) When I’m in a plane, I do not think about the aerodynamics

Strongly agree.

I have not been in a plan since I was a toddler, but if I were to ever travel in one, aerodynamics would be the last thing on my mind!

71)  I do not keep careful records of my household bills.

Strongly agree.

72) When I have a lot of shopping to do, I like to plan which shops I am going to visit and in what order

Strongly agree.

And I tend to shop at very specific times.

73) When I cook, I do not think about exactly how different methods and ingredients contribute to the final product

Strongly disagree. 

I enjoy analysing recipes  because food and cooking is my major area of interest.

74)  When I listen to a piece of music, I always notice the way it’s structured.

Slightly disagree.

75) I could generate a list of my favourite 10 songs from memory, including the title and the artist’s name who performed each song.

Slightly disagree. 

I prefer reading books to listening to music.

Grand score: 41 out of 80.

What the scores mean:  40-50 – You have an above average ability for analysing and exploring a system.

51-80:  You have a very high ability for analysing and exploring a system. More people with autism than in the general population are supposed to score in this range according to SBC’s theory, when compared with non autistic men, and almost no non autistic women score this high.

Therefore,  my systematising ability is similar to a non autistic man, if the theory is to be believed (which is highly debatable). The questionnaire is very male biased in the first place, and works against autistic people with dyscalculia. If I did not have dyscalculia and was male, my score would probably be a lot higher. Also, SBC sees systematising as almost synonymous with the STEM subjects, but arguably philosophy and more creative subjects also involve systematising (subjects  where women are more heavily represented, such as the arts and humanities). However, very few questions target these domains.

According to SBC the SQ predicts your AQ score, so the higher your SQ the higher your AQ. Yet my AQ is higher than my SQ would suggest, and considering many autistics struggle with co-existing conditions such as dyscalculia, I  am skeptical that the SQ has universal  validity.

 

 

 

 

 

 

Simon Baron Cohen’s AQ

I thought it would be interesting for me to fill out Simon Baron Cohen’s well known autism screening  questionnaire on my blog. I have taken this questionnaire many times previously, and usually get a score at the lower end of the autistic range (80% of  clinically diagnosed autistics, according to Cohen, score between 32 and the maximum of 50 points), despite experiencing my autism quite severely. I  think that the questionnaire is biased towards the male phenotype, and I’m not sure to what extent the AQ is a valid or reliable indicator of whether or not someone is autistic. People without autism might get a high score for other reasons, such as introversion, and the AQ result might change over time ; my  own score fluctuates from around 32-38 points.

 1) I prefer to do things with others rather than on my own.

Slightly disagree.

I  prefer being on my own most of the time, but I do enjoy the company of trusted support workers  when I go on some outings, and  when I deliver talks I like having the input of others because this reduces stress levels. This question is tricky to answer because my response depends on the context. It is certainly easier to work with others in an organisation when delivering talks (such as Aspie Trainers) than it would be to try and do all the work on my own. 

2) I prefer to do things the same way over and over again

Slightly agree.

This questions depends on what ”thing” I’m thinking about. Certainly I like to go to bed at the same time every night, I need to follow my reading routine most days, and I  do certain activities, such as shopping , within the same time frame. My life is very predictable. I eat breakfast at more or less the same time each day, and the same usually applies to lunch and dinner. The only reason I did not put ”definitely agree’ is because I enjoy experimenting with my diet, and eating the same food all the time would not stimulate my culinary curiosity. But maybe I’m being overly pedantic in answering this question, as otherwise I would ”definitely agree”.

3) If I try to imagine something, I find it very easy to create a picture in my mind

Slightly disagree.

What is this question asking me to imagine?.  I’m guessing it refers to imagining possible scenarios involving future events or imagining how someone is feeling. I can imagine or conjure up in my mind concrete facts such as what someone looks like (as long as I know them well), but I struggle to picture future outcomes, particularly if they involve social scenarios. This question has me rather stumped as it’s not clearly formulated . It also makes me think of a meditation exercise, where you’re asked to imagine that you’re by a lake surrounded by trees. I can imagine this sort of scenario quite well, however I struggle to immerse myself in the picture because I’m so easily distracted.

4) I frequently get so strongly absorbed in one thing that I lose sight of other things

Strongly agree.

No doubt about this one!. My reading is extremely important to me, and when I’m deeply immersed in a book, it’s hard for me to summon the energy to do tasks such as cleaning the kitchen or bathroom, or taking the initiative in other areas. My life is on hold until I finish the book, and quite often when the book is finished I am not sure what to do next or how to plan my life. My life revolves around reading and cooking, the two intense areas of focus that guide my life. Also I sometimes get extremely obsessed with  something, for example, if someone has said something that I disagree with. My life is literally put on hold until I have rectified what has gone ”wrong” in my mind.

5)  I often notice small sounds when others do not

Strongly agree.

Slight noises that don’t affect others, such as a light being switched on or the soft sound of a creaking floorboard, disturb my sleep in a way that others often don’t understand.

6) I usually notice car number plates or similar strings of information 

Definitely disagree.

I am not remotely interested in cars!. This is one of Cohen’s highly gendered questions, revealing his male bias (although I am sure there are women out there who are interested in cars, and  vice versa with regard to men). What does similar strings of information mean? If it’s referring to numerical patterns then my answer would be definitely disagree.

7) Other people frequently tell me that what I’ve said is impolite, even though I think it is polite

Slightly disagree.

Really not sure about this one.  My parents, particularly in the past, chastised me for my tone of voice or manner of requesting things. However, like many people with autism, particularly women, I have learned to mask my  autism when out in public, and therefore the only person who might come out with such a statement these days is my dad.

8) When I’m reading a story, I can easily imagine what the characters might look like

Slightly agree.

Not sure how to answer this one. Does it mean being able to picture visual details, such as picturing the colour of a character’s hair if you have read that it is blond?. I can picture these details, although my representation is usually quite vague and ill defined with regard to fictional characters. I swing between slightly agree and slightly disagree on this question as I’m not too sure what a ”good” imagination would look like.

9) I am fascinated by dates 

Slightly disagree.

This is another stereotypical, male biased question. One of the autism stereotypes is of a Sheldon Cooper type male who is obsessed with nerdy type information such as dates and facts,  often relating to maths, science, or TV trivia .

I am slightly interested in historical dates, such as the fact that the fire of London occurred in 1666 (remembered thanks to my synaesthesia – the 6’s are all green), but I’m not great these days at remembering people’s birthdays, and when reading I’m more interested in the meat of the narrative than the dry dates themselves. It was a different story when I was obsessed with Kate Winslet, though. Back then I knew every single film release date, and the date of birth of all her family members.

10)  In a social group, I can easily keep track of several different people’s conversations

Definitely disagree.

I try incredibly hard to focus on a conversation, but eventually I shut down and zone out because there is too much information.

11)  I find social situations easy 

Definitely disagree.

Social situations are extremely hard work.

12) I tend to notice details that others do not 

Slightly agree.

This one is quite hard to answer. I do get sucked into the details when I’m reading, and I can’t do things casually. My approach to life is all or nothing, particularly where my interests are concerned. That said, unlike some autistics, I’m not a grammar pedant, and it’s not the case that I will notice literally every single detail. Also, I’m not sure what others see (that problem understanding other’s minds) , so until I’ve asked another person or really grasped how they see the world, this question is open to interpretation.

13)  I would rather to go to a Library than a party

Definitely agree.

Parties are loud, overwhelming, boring and pointless affairs. I’d much rather satiate my curiosity with a good book; this one is a no brainer, to pardon the pun!

14)  I find making up stories easy 

Slightly disagree.

Another male biased question. Many people with autism, particularly those with the female phenotype, enjoy retreating into fantasy worlds and are very good at creating elaborate stories. This statement plays into the myth that autistics lack imagination.

I used to tell my mum stories when younger, the ones that began with the classic ”once upon a time”. I’m not sure how easy I find this as an adult, because I have no interest in writing stories these days. I wouldn’t say making up stories has ever come easily to me, though, hence the reason for slightly disagree.

15) I find myself drawn more strongly to people than to things

Slightly disagree.

This question is hard to answer, and I suspect it’s another male biased statement. All my interests are people focused, yet I prefer reading about people than actually being with them, although I do enjoy spending short periods of time with people I like, when the interaction is brief and structured.

16) I tend to have very strong interests that I get upset about if I can’t pursue

Definitely agree.

This is one of the most obvious and pervasive traits of my autism, although my interests are not geeky and stereotypical.

17) I enjoy social chit-chat

Slightly disagree

I almost put definitely disagree, but I’m not entirely sure what social situation this is referring to.  I hate unsolicited social contact, such as when a stranger tries to strike up conversation on the bus, but in short doses with people I like, I tolerate and can find some satisfaction in social interaction., even though it’s very hard work.

18)  When I talk, it isn’t always easy for others to get a word in edgeways

Slightly disagree.

With my dad I would put definitely agree, but I have learnt how to mask this trait when in public, hence why I answer with slightly disagree. But who knows, I would have to ask them, because people are often too polite to say what they really think.

19)  I am fascinated by numbers

Definitely disagree.

I have dyscalculia and numbers are just empty symbols that carry no information.  This statement is also very male biased and stereotyped.

20) When I’m reading a story I find it difficult to work out the character’s intentions

Slightly agree.

I used to really struggle with this as a child, and this was partly why my comprehension lagged behind both my  mechanical reading and my chronological age.

These days my comprehension for written text has improved, and it is much easier to work  out a character’s intentions in a book than in real life, because the latter does not allow enough processing time. When reading fiction, though, I do rely heavily on book reviews and Spark Notes to help me work out the hidden nuances of the text.

21)  I don’t particularly enjoy reading fiction

Slightly disagree.

Generally I prefer non fiction books (these days philosophical and psychological works), but I do quite enjoy reading fiction if it is related to my interests.

This statement is very stereotypical, and there are many autistics (particularly women, but also many men) who enjoy fiction, sometimes to the point of a particular work (such as the Harry Potter series) being a special interest.

Briefly, as a child, I was very interested in the Malory Towers series of books by Enid Blyton.

22)  I find it hard to make new friends 

Definitely agree.

The whole concept of friendship has always been very difficult for me to understand.

23)  I notice patterns in things all the time 

Slightly disagree.

I’m tempted to put definitely disagree on this one, but I’m not too sure precisely what patterns this question is alluding to.

24) I would rather go to a theatre than a museum 

Definitely disagree.

Yet some people with autism are obsessed with the theatre. Baron Cohen being stereotypical again.

25) It does not upset me if my daily routine is disturbed

Definitely disagree.

Without routine my life feels like chaos.

26)  I frequently find that I don’t know how to keep a conversation going

Slightly agree.

When younger this would have been definitely agree, but my conversation skills have significantly improved with age, although the art of keeping a conversation going is incredibly hard work beneath the surface mask.

27)  I find it ”easy to read between the lines” when someone is talking to me

Definitely disagree.

Subtext and hidden meaning in real world conversations completely eludes me.

28) I usually concentrate more on the whole picture, rather than the small details

Slightly disagree.

I am better at whole picture thinking than I used to be, but it does not come naturally to me.

29)  I am not very good at remembering phone numbers

Slightly disagree.

If it’s a number that I use often, I can consign the number to memory.

30) I don ‘t usually notice small changes in a situation, or a person’s appearance 

Slightly disagree. 

I can be visually ”blind” because my visual sense is quite weak. In the past, for example, my mum might have had her hair cut and I would not notice.

However, it does  sometimes bother me if furniture has been moved around without my permission, and I will want to put things back to how they were previously.

31) I know how to tell if someone listening to me is getting bored 

Slightly disagree.

I sometimes get a hint that someone might be uncomfortable but I am not sure what to do with the information, and will likely carry on with my behaviour anyway unless they explicitly tell me I am boring them.

32) I find it easy to do more than one thing at once

Slightly disagree.

For most activities this would be definitely disagree, but because cooking is my special interest, I am a lot better at multi tasking in the kitchen. I think this is because of constant practice and repetition. However, this does not translate to being able to multi-task in a work environment because I  work slowly and to my own timetable, and cannot deal with social interaction demands when I need to focus on cooking.

33) When I talk on the phone I’m not sure when it’s my turn to speak

Slightly agree.

The pauses can be fairly obvious in a a phone call, but I find it very hard to keep on top of the conversation because working out the cues is not natural for me.

34)  I enjoy doing things spontaneously

Definitely disagree.

Everything in my life has to be planned. If my dad asks me to come out for a walk or to speak to someone on the phone, without  prior warning, I will get very annoyed and frustrated.

35) I am often the last to understand the point of a joke

Definitely agree.

I then feel very stupid and it can make me feel  excluded and like an outsider.

36) I find it easy to work out what someone might be thinking or feeling just by looking at their face

Definitely disagree. 

I can work out obvious facial expressions, and it is easier for me to work out what my dad’s face is conveying (his stressed face is very obvious!), but I can’t work out the faces of acquaintances or casual friends.

37) If there is an interruption, I can switch back to what  I was doing very quickly.

Slightly agree.

I get very stressed if I am interrupted, but if the interruption is to my routine, the greater imperative would be for me to complete the routine so I would want to get back to what I was doing as quickly as possible.

38) I am good at social chit-chat

Slightly disagree.

However, other people might think I am good at social chit chat because they only see the mask. I found this statement hard to answer, and sometimes I answer with slightly agree, as I’m not sure whether my socially competent mask enters the equation. This statement is problematic because of the masking and camouflaging phenomenon.

39) People often tell me that I keep on going on and on about the same thing

Slightly disagree.

Or should that be slightly agree?  At home, when I’m not masking, I do have a tendency not to stop talking about one of my passions. But in public, I’m careful not to keep talking. That mask I put on yet again!

40) When I was young, I used to enjoy playing games of pretending with other children

Slightly agree.

I have fond memories of playing dungeons with two older girls who were assigned  by teachers to look after me and play with me at the beginning of primary school ( I had not made friends among my peer group).

When I did finally make a peer group friend at the end of  my time at primary school, we played teachers and ”mum and dad”.

However, I struggled to relate to my peer group and often  had no one to play with.

This statement is male biased and stereotyped, for it is now well known that autistic girls are more likely to enjoy games involving make belief.

41) I like to collect information about categories of things e.g. types of car, types of bird, types of train, types of plant, etc)

Definitely agree.

However, why does Cohen not include other categories, such as philosophers, shades of colour, different cuisines, or areas that are more female biased, or, better still, gender neutral?

42)  I find it difficult to imagine what it would be like to be someone else

Definitely agree.

Other peoples’ thoughts and feeling are a mystery to me.

43)  I like to plan any activities I participate in carefully

Definitely agree.

The planning and organising can be very stressful as every detail has to be accounted for, from train times to places to eat to what to wear.

44)  I enjoy social occasions

Slightly disagree.

But it depends on the occasion (is it structured or a party?), who is present, and whether or not it involves my interests.

45)  I find it difficult to work out peoples’ intentions

Definitely agree.

46) New situations make me anxious

Definitely agree.

Although my level of anxiety will vary depending upon how many new variables are involved, as if there is a level of familiarity to the new situation (meeting a new person but in a familiar cafe), I will not be so anxious.

47)  I enjoy meeting new people.

Slightly disagree.

Although my curiosity can sometimes get the better of me and bring down my level of anxiety.

48) I am a good diplomat.

Slightly disagree, but not entirely sure.

49) I am  not very good at remembering people’s dates of birth

Slightly agree. 

What this has got to do with autism evades my understanding, and I think Cohen is playing at stereotypes again.

50)  I find it very easy to play games with children that involve pretending

Slightly disagree.

But not too sure as these days I am never around young children.

Grand total: 38.

Baron Cohen’s studies have shown that adults with a clinical diagnosis of autism tend to score above 32 out of 50, so my score fits into that range. However, as the statements are open to interpretation and subject to male bias, as well as not taking into account masking, the score should be treated carefully. This is particularly the case as Cohen’s team has already identified that males and scientists  in the general population tend to score higher than females, so it stands to reason that autistic women and those not proficient in science might score lower on this test than autistic men with the ”male” presentation. The converse is also true: autistic men with the ”female” presentation will also get an artificially lower score.  The test is not itself diagnostic, but it concerns me that as a screening instrument it may unfairly discriminate against the ”female” phenotype (that can also be expressed in some men).

 

 

 

 

 

 

 

 

 

 

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