Signs of autism: childhood

Having just outlined the possible reasons why my autism was overlooked in childhood, I will now list the autistic signs I displayed.

  1.  Referring to myself by name instead of saying ”I”

Until the age of  5, I would often use my name to refer to myself instead of saying  ‘I”. Recently I listened to an old cassette recording of a conversation between my Granny and I, age 4 and a half. Granny said, ”would Anna like to pick up the post, or shall I do it?”. I replied, when Granny went to pick the post up, ”no, Anna wants to catch the post!!”. I would also repeatedly refer to myself as ”she”. Apparently this communication quirk is common in toddlers, but most children consistently use ”I” to refer to themselves by the time they are three, at the latest. On its own, this trait does not necessarily mean a child is autistic, but it can be an early sign of autism when in the presence of other traits.

2) Tip-toe walking.

Again, this trait is common in young children, but most children outgrow the trait once they leave toddlerhood. Many autistic kids tip toe walk for much longer, and some of them still tip-toe walk in adulthood. I only walked on tip-toe when I was not wearing shoes. It felt uncomfortable to walk with my  bare feet flat against the ground, and it was easier to balance and maintain co-ordination if I walked on my toes.  Even as an adult, I still often walk on my toes when I’m at home.

3) Poor comprehension

I learnt to read early, but could not follow the plot or understand the character’s intentions. This trait is related to difficulties with communication and social imagination.

4) A spiky or uneven skills profile

It is common for autistic kids and adults  (as well as those with other developmental conditions, such as dyspraxia) to be really advanced or ”high functioning” in some areas, while really struggling with certain skills. For example, at the age of 9, my verbal IQ was between 99 and 111, which translates as high average, while my non verbal IQ (which measures, among other things, abstract visual processing and social understanding), was between 58 and 74!. In other words, non verbally I had a significant learning difficulty. My reading age at the age of 10 was 15, yet my reading comprehension was almost two years below my chronological age. Furthermore, I had no number sense, and struggled with certain aspects of fine motor coordination, such as tying shoe laces. Teachers also  complained that I was very disorganised because I put everything in one place. I needed a lot of help from my parents to complete homework and to ensure that I took the right items into school for each lesson.

5) Difficulties making friends, and playing with much younger children

I was very often alone in the playground, and when I did play with other kids, they were usually at least two years younger than me, or had similar difficulties themselves. On the rare occasion that I made a peer group friend, I could not maintain the friendship because I was very possessive and clingy. It can be easier for autistics to relate to people who are younger than them because developmentally, their social skills lag behind their chronological age.

6) Sensitivity to noise and sensory fixations

I was easily overwhelmed by loud and sudden noise, such as thunder and fireworks. I also found it hard to sleep if there was any noise, and began to sleep with fingers in my ears from around the age of 9. I found parties and large crowds of people overwhelming, but at the time this was explained away as shyness and a lack of confidence.

My parents were very worried when, at around 2 years old, I kept staring at the lights in a cafe, as if I was in a trance. They took me to the doctor thinking that I might be seriously ill, but they were told I was just fascinated by the lights.

7) Misunderstanding instructions

When I started school, there was a fire alarm practice. The teacher told the class what was going to happen, but I misinterpreted the instructions, and believed that the school was going to burn down. I screamed and refused to go to school until the teacher finally explained to me that nothing bad was going to happen.

There are many examples I could use, but I think this one is illustrative. On my 6th birthday my grandparents treated me to a meal at a hotel. The hotel owner told us that, as the hotel was closing soon, we had better hurry up or he would ”kick” us out. I really believed he was actually going to physically boot us out, so I ran terrified onto the hotel balcony and hid under a table. Suffice to say the hotel owner was only joking.

As a result of taking safety instructions literally, I obsessively washed my hands, and as a teenager I avoided people who were ill.

8) Intense interests and not liking change (this became even more noticeable as a teenager)

I was very interested in food and would talk about this non stop when I was at home. Later I became very interested in the human body. Normally I did not pay attention in lessons, but in year 6, when we studied biology, I  focused intensely on what the teacher was saying, and wrote everything down.I also enjoyed the Malory Towers series of books, which I tried to memorise off by heart. Unfortunately this later put me off reading because I became anxious if I could not remember what a character looked like.

When I visited a museum, I had to look at every artifact in great detail, and could not move on until I had read everything, much to the impatience of my younger brother.

As a teenager, I was fixated on the actress Kate Winslet, Titanic, and babies, and found it hard to get interested in any other subject.

9)  Disruptive behaviour

Most of the time I was quiet and day day dreamy at school, but sometimes I would disrupt the class by reading out loud in a very fast voice, or I would walk around the classroom when I was supposed to be working. In the playground I would annoy other kids by running straight into their play. An early concern expressed by my nursery school was that I never sat still at reading time – I preferred to bounce on the bean bags.

10) Tantrums

All kids have tantrums, but most learn how to regulate their emotions as they get older. Autistic kids often continue having tantrums (or meltdowns as they’re often called these days), and some never outgrow them. I never had tantrums at school , but I would scream and cry at home whenever I did not get my way, particularly if it involved an interest. I still had ”toddler like tantrums”, as my mum described them, well into my teens and early 20s. They are a lot less common these days as I have become better at regulating my emotions, and also because I have more of my own space since my dad bought me a flat. My parents found it very hard to manage these outbursts, and I would get told off. Unfortunately, this only served to injure my self -esteem and make me feel that I was to blame and was not a ”good” person. Yet the triggers for the tantrums always involved anxiety. I could not control my behaviour, and this was because of the autism.

 

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All the signs were there, so why was I missed?

As a child growing up, I displayed all the key signs of autism, yet the school called me ”an enigma” and were confounded by my difficulties. I often wonder why I was missed when the autism was glaringly obvious if only people were more observant. Quite simply, I was ”hiding in plain sight”.

I decided that I would list the potential reasons behind the  autism oversight.

  1.  I was a happy child

There is no reason why autistics cannot be happy, but when it comes to diagnosis, being happy probably does you no favours. I did not complain or get depressed, and I often smiled.  People might not have considered autism because , in their minds, if you’re autistic you would be mentally disturbed as a natural consequence of the difficulties. In my case, I did not question why I was different until much later, and just plodded along without causing major upheaval.

2) I spoke clearly and was very articulate

A common misconception is that  all autistic people struggle with speech, stutter, or cannot articulate themselves. Autism is not one condition and every type of autism and individual is different. Asperger’s is a type of autism where verbal skills are often (but by no means always) advanced, and this can mean it is harder for other people to spot a communication impairment. People often focus on speech as the be all and end all of communicative ability, when in actual fact, the vast majority of communication is non-verbal.

3) Sometimes I made ”good eye contact”

A common myth is that all autistic people actively avoid eye contact. In fact, it is more likely that eye contact is inconsistent. As a child, I sometimes struggled to make eye contact, and this was flagged up by teachers as a cause for concern. Yet, the educational psychologist who assessed me age 9, wrote in the report that I  made”good eye contact”. It is likely that it was easier for me to make eye contact during  the highly structured one to one atmosphere of a clinical assessment than it was to look the teacher in the eye in a busy and distracting classroom environment. Furthermore, my parents had often told me to look people in the eye, and so I tried hard to do what was expected of me. Yet despite sometimes making good eye contact, appearances were deceptive. I could not, and still cannot, read any meaning in the eyes, and I found it very hard to look and listen at the same time. These days, I try not to force myself to make eye contact, and instead  do what is natural for me. Sometimes it looks like I’m making eye contact when in reality I am looking at the nose or mouth, and I often just look in the person’s direction instead of consistently looking at their face.

4)  My interests were not ”geeky”

I mostly kept quiet about my interests at school instead of talking non stop to my classmates about trains, computers, or maths, which are the subjects many people assume autistics are obsessed with. Instead I was interested in food and what every child had to eat in their lunchbox at school. Later I became obsessed with the actress Kate Winslet, Titanic, and babies. However, only my family were aware of these interests because I talked non stop about them at home.

5) I was not good at maths

Another myth is that all autistic people are good at maths. It’s true that a significant number of autistics are interested in numbers, but an equally significant number of us really struggle in this area. Teachers said they had never seen a child before who struggled to the extent I did with basic numeracy, puzzles and patterns, and  this concern overshadowed the other difficulties I experienced. All their attention was focused on trying to work out why I was so poor at maths and spatial awareness.

6) I was a girl

Girls and women are often under diagnosed because of the long standing stereotype that autism is a ”male thing”. Girls are assumed to be better at socialising than boys, and any social difficulties they experience are often explained away as a result of other problems.

7) I was simply shy, anxious, and lacked confidence

Primary school teachers noticed that I was often on my own in the playground, and that when I did play with other kids, they were a lot younger than me. However, they just assumed that I was ”emotionally immature”, and ”confidence boosting” activities were recommended.  In fact, I was not shy but instead was chronically confused and felt out of my depth socially and academically.

8) Sometimes I did play with other kids

Although teachers flagged up difficulties with social interaction when I was young as 4, I was not aloof or in my own world. I actively approached other kids, and sometimes they would let me play skipping games, or I would develop an on off friendship with just one other girl. Teachers might have thought that autistic children are completely oblivious to all social contact, and do not seek out friendship. In fact, some autistics do make social overtures, but their autism means they struggle to sustain relationships. More often than not I was a loner at school, but a loner within the crowd instead of  always being on the periphery of the playground.

Finding my place

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Although I was generally a happy child, there was an underlying recognition that I did not fit in. I did not question why until my teenage years, and just got on with the life that had been given to me. Not questioning and not really being bothered by my difference was probably my saving grace because it prevented me from getting down or unhappy. I was in my own bubble, and I had no insight into my difficulties, no recognition of a peer group that I was expected to emulate, and a blithe unawareness of the concept of embarrassment or public opinion. Yet I was still aware that I was not made out of the same cloth as the other kids, because, unlike them, I  was a perennial loner, and struggled to learn in the classroom.

For my parents, it was a different matter entirely. They were concerned by my inability to learn basic tasks, such as tying shoe-laces, and by the constant criticism from teachers who told them that I was disrupting the other kids in the class. They would constantly say, ”we cannot understand Anna”;  ”she’s  a brilliant reader, yet her comprehension is much poorer than it should be for her age, and she has no number sense”.

Towards the end of  my years at primary school, I first heard the word ”disability” applied to my difficulties. This ”disability” meant  that I was given a placement at my local C of E secondary school, which offered 5 places a year to non religious families who had a child with ”special needs”. My parents, unknown to me at the time, had to fight for this placement, and had to attend a tribunal. They argued that I would  be too vulnerable attending the large out of town high school, because my problems with spatial awareness would make it hard for me to cross roads. I was told that my ”disability” meant that I had to leave class for a few hours a week to attend the learning support base, or ”room 6”. This room had a stigmatic aura surrounding it, and the fact I needed this academic support, made me feel as though I was tarred with some invisible brush.

I knew by age 11 that I was a bit different, but I felt that I would change as a teenager, and that by age 20, I would be a social butterfly with friends, a job, and independence. I was keen to forge a better reputation for myself, to start anew, and to leave my loner status behind me. It was not long before my hopes were rudely dashed by one social rejection after another. Why, I wondered, could I not make friends? Maybe my parents had not socialised me enough; if they had only sent me to Brownies or after school dance classes, maybe I would not have so many problems. ”What are you supposed to talk about?”, I asked my mum. ‘She replied, ”you just know…conversation develops naturally”. Well, it didn’t for me! I knew that making comments about the weather was considered good practice, but I could not carry the conversation forward beyond saying, ”it’s a nice day outside, isn’t it”. I would say this in a soft, quiet, polite voice, which I now realise was an early exercise in masking, which means the way in which some autistic people  hide their difficulties by copying others. Yet my quiet facade did not help me make friends. Eventually I gave up trying. I tried to get social contact in other ways by being deliberately silly and inappropriate in order to get a reaction from other kids. For example, I would talk about taboo subjects, such as bodily functions, that always elicited a laugh. But the girls would say, ”we’re not laughing with you, we’re laughing at you”. Because I was still very indifferent to peer ridicule, and had an undeveloped sense of shame, their disdain did not put a curb to my strange behaviour. In fact, their ridicule spurred me on to be even more inappropriate. For example, I would stare hard at two popular girls, who would get angry with me, but their reaction just made me laugh.

However, despite appearing not to care, the reality is that deep down the peer rejection was insidiously gnawing away at my confidence and self esteem. I began to feel increasingly weird, and I did not know why I was so different. What is wrong with me?, I would wonder. I carried on blaming my parents, and my strong and obsessive interests in the actress Kate Winslet and babies provided me with a safe refuge where I could avoid questioning my life too deeply. My way of being was still to just get on with things, instead of being introspective and depressed.

I sincerely believed that I was the only one who struggled with making friends and understanding school work. As a teenager I was still very child like, and my parents helped me with tasks that most teenagers can do on their own. However, I carried on believing that my problems were caused by other people. If my parents suggested that my brain was wired differently, I would get extremely angry.

Being in denial about my difference was protective in the sense that I never got depressed, but it also prevented me from getting the right support at a critical age. Because I was so confused by the world and could not understand the the grey areas within safety instructions, I developed  disabling OCD because I was so worried about the risk of getting ill. This meant that I held my breath in class to avoid breathing in germs, which severely affected my concentration and ability to learn in the classroom. I told no-one, not even my parents, about my breath holding, but my parents noticed the obsessive hand washing, endless ”does it matter if…” questions, and refusal to eat certain foods, such as meat, that I felt might be contaminated.

My parents support enabled me to attend my local University. I was not able to work because of my difficulties, so University meant that I at least had something to do with my time. I was still, developmentally speaking, very young and immature, and I was not ready to leave the safety net of education.

It was during the last year of University that my parents finally cajoled me into seeking help, with the threat that they would confiscate my Kate Winslet videos, if I did not receive therapy for my OCD. At first I refused, but once I accepted that I needed help, a huge veil had been lifted from my mind, and I felt a sense of liberation and place in the world. I accepted that I had OCD and that I was not the only person with problems. Yet, the OCD only accounted for some of my difficulties. As I voraciously read books about OCD and psychology, I still could not find a place where I completely fitted in. I then remembered that my parents had mentioned the possibility of Asperger’s, and  so I gingerly decided to read up a little on the subject. I had hardly any knowledge about the condition, other than that my mum’s friend’s son had Asperger’s, but he went to a special school and seemed far more ”severely” affected than I was. As I read a bit about Asperger’s, it all seemed to make sense. So there is a place for me, after all, I thought. This realisation was the start of the road that led to my diagnosis, once I had managed to secure a referral to the Adult Autism Team.

Autism and psychology then became a special interest, and I read endless books about overcoming anxiety. I  finally took ownership of my problems by actively trying to improve my life and access the community. I could not have achieved this without the amazing support from Autism Sussex and LIMA (Low Intensity Autism Management), but  my own will power and positive outlook definitely had a large role to play in my self improvement.

Ten years ago I finally discovered that I had a place in society, that I was not alone, that I was not just a ”weird loner”, that there were others who had also gone through life on the fringes. I am still processing this momentous new piece of knowledge, and the past still affects me in untold ways. Although I’m not depressed (which is quite rare in the autism community), I do struggle with feelings of low self worth. However, by raising awareness of autism (my home country and source of identity), I can help to put old demons to rest. I want to say loud and clearly that I do exist and that what happened in the past was not okay and must not be allowed to ever happen again.

 

My Favourite things: A list

I love lists, so I thought it would be fun to list the things in my life that make me feel good (there are others, mainly food, but that could go on and on). I’m amazed that I came up with 35 items!

  1. Apple crumble and cream.Image result for apple crumble
  2.  Spotted dick and custard.                     Image result for spotted dick and custard3) Cocoa Image result for Cocoa drink4) Cookies and coffee              Image result for biscuit and  milky coffee5)             Cheese and tomato sandwichImage result for Cheese and tomato sandwich6) Cheese and onion sandwich   Image result for Cheese and onion sandwich7)  Boiled egg and toast   Image result for Boiled egg and toast

8)  Tuna sandwich Image result for Tuna sandwich

9) Baked beans on toast Image result for Baked beans on toast

10) Scrambled egg on toastImage result for scrambled egg  on toast

11) Sardines on toast Image result for Sardines on  on toast

12) Avocado Image result for avocado toast

13)  PastaImage result for Pasta

14) Tinned salmon Image result for Tinned salmon

15) Quiche Image result for Quiche

16) Pizza Image result for Pizza

17) Strong tea Image result for Strong tea

18) Mince piesImage result for Mince pies

19 ) Purple and pink Image result for Girly stuff

20)  Pretty things Image result for Butterflies

21) Hair bands Image result for Hair bands

22) Brightly coloured clothes Image result for Brightly coloured clothes

23) Hippie stuff, 1960s, social movements and ideologiesImage result for Hippie

24) Books Image result for Books

26) Public speakingImage result for Public speaking

27) Internet articlesImage result for Internet articles

28) Culture and museums Image result for art gallery

29) The seaImage result for The sea

30) Philosophy, psychology, and how people workImage result for Philosophy

31) Nutrition Image result for Nutrition

32) Porridge and breakfast Image result for Porridge

33) Scones, cream, and jamImage result for scones cream and jam

34) Afternoon tea Image result for Afternoon tea

35) RainbowsImage result for rainbows

 

My trip to Portsmouth

021Overcoming autistic challenges

On Thursday the 30th November 2017, I travelled to Portsmouth Harbour by train, on my own, for the second time this year.  I stood up on the train because there were limited seats, and I need space (owing to my OCD fears around germs and contamination, as well as a heightened sensory reaction when I am in close proximity to other people).

I felt slightly dazed and tense upon arrival in Portsmouth, and experienced some degree of health anxiety. This is connected to finding it hard to work out how I feel, and sensations are often mistaken and confused. I often worry that I might be sick. The feeling, which was probably anxiety, although it’s often impossible for me to pinpoint the feeling in the moment it occurs, passed quickly as I began walking.  I walked fast in the direction of Gunwharf, through the shopping centre. I passed the Italian restaurant Carluccio’s , and thought it looked interesting as it contained a shop, so I looked inside. The shop was small, but sold an array of interesting condiments and other food items. I got excited when I noticed a jar of sauce vongole, or clams in tomato sauce, because I had been looking for this product for quite a while, after coming across a recipe in my Good Food pasta book for spaghetti vongole. I bought the jar, and I also bought a jar of anchovy and green olive pesto. This purchase shows how far I have come; I never used to buy unfamiliar brands, because my OCD fears told me, there might be risks involved (unknowns, might be dangerous, might make me ill). But these days, I am comfortable buying most brands. Also, I enjoy trying different food, and experimenting with recipes because food is one of my specific, intense and specialist interest areas.  I get bored eating the same food every day, and aim to try as many different recipes and food combinations as I can. I still get nervous about buying certain food items, but I’m working on this fear.

After Carluccio’s, I power walked to the sea front. I am a very energetic person, and sometimes I get intense bursts of energy that make me feel like a 10 year old in a 30 year old’s body. Because of my severe dog phobia, I took several detours, and could not therefore walk all the way along the sea front, which was a shame.  Dogs scare me because they are unpredictable. I imagine them running over to me, being aggressive, barking at me, and suddenly changing from one state to another. Certain breeds scare me more than others. I’m particularly scared of staffies and guard dog breeds, because of their association with fighting and their muscular build.  I got anxious several times, but managed to deal with this and work round my fears. I did not let the fears prevent me from reaching my destination, which was the Natural History museum.  I had discovered the whereabouts of this museum the last time I visited Portsmouth on my own. Back home I had googled the museum and virtually walked there using Google Maps.  This had prepared me by making the unfamiliar familiar. I think that Google Maps is a life saver for autistic travellers, because the maps help us to work through our fear of change   and the unknown. In our own time, in the safety of our own home, we can get used to a new place or location.

I really enjoy visiting museums because I love learning, and acquiring information.  This trait goes right back to my childhood, when I spent an inordinate amount of time studying each object and fact panel in museums, and had to look at everything in order and in great detail. These days, I don’t feel such a need to look at everything in a museum, although I still get anxious if I have missed anything out.  I enjoy  taking photographs because this helps me to further order the information; it is a way of collecting and categorising experiences and objects, which helps me feel more grounded and stable in a constantly changing world. I love putting the pictures up on Facebook, where I can share them with other people, which helps me feel connected and validated.

The Portsmouth Natural History museum has free entry, but it is very small. Nevertheless, there were interesting factoids about various animals, including flamingos. I never knew before today, that flamingos are pink because of all the caretenoids (a type of pigment) they ingest from the food they eat. There was also a butterfly garden, which comes to life in the Spring (when I hope to return) , and a very interesting panel all about the  butterfly life cycle. Upstairs there was a bee hive behind a glass window, and I read about the bee colony, the Queen, workers, and drones. It felt good to re-learn information that I only have a shallow appreciation of, and I left the museum feeling a bit more ordered and connected with the world. There was only one frustration, however, when I was at the museum, in the form of people. As soon as I heard that other people, including a few kids, had entered the building, I felt tense and on edge. I had to focus extra hard to take in the information I was reading, which meant I started swaying from side to side, to help me concentrate by  using the  sense of movement to block out the heightened auditory sense.  I also had to re-read out loud the sentences several times because the presence of other people makes me feel overloaded and distracted.

After visiting the museum, I walked back to Portsmouth Harbour. The weather was perfect. It was a dry, sunny, clear skied day, although a breeze picked up, which meant it was rather hard work walking back by the sea, as I was walking against the wind. This made me feel a bit tense and nervous because the wind makes me feel out of control, as it catches against my breath.

Back  at Portsmouth Harbour train station, I ate a few oat cakes ( ‘’safe’’ food that I don’t worry about taking out with me, as it’s not  perishable, and it is anxiety provoking eating out at new places because of my OCD related hygiene fears).

I then got the train to Portsmouth and Southsea because I was determined to visit The Works shop and H&M. These are two of my favourite shops, and I always make a beeline for them whenever I visit a town.  The Works in Portsmouth, however, was disappointing as it was quite small. It was also very busy, which made me feel a bit nervous. It is hard to look at the books with people constantly walking past me, and this makes me distracted and irritated. But I’m determined and persistent when my interests are involved, so I forced myself to stay there as long as it took to properly examine what books were on the shelves. I ended up buying a book about the science of reading. As reading is one of my current major routines, I thought it would be interesting to read about the brain processes behind this activity. I love finding out about how things work and are made. I have a very scientific and philosophical mind. I had to wait behind another customer in a queue before I could buy the book, and I coped by chewing my lip and staring at a point on the floor, which helped me to grin and bear the discomfort of  my OCD fears around germs, and the sensory assault of being surrounded by so many people. Luckily I did not have to wait long.

I then looked round H&M. I endured the noise in order to satisfy my strong interest in clothes, but the only top I liked the look of, which had a Unicorn design, was not in my size.

Finally I looked round Debenhams. I was interested in going inside because my town does not have a Debenhams, and I enjoy discovering different shops and products. If you are only familiar with autism from reading a textbook, this might surprise you. In fact, I do have a very strong need for routine, and really dislike certain changes, and I need to be in control at all times. Certain things in my life, such as my bedtime, must be kept the same at all costs. Yet in other areas, I enjoy experimenting and seeking out new experiences, as long as they are within the safety net of a routine and structure.

Finally I got the train back home, and am pleased to say that I stayed seated for the full journey. Luckily for me, I sat on a seat near the toilets that was far removed from the other passengers, so I had that much needed space.

Afterword 

 I am so glad that I went to Portsmouth on my own. For a non autistic, this might not seem like a big deal, but to me this is almost equivalent to climbing Mount Everest (although I don’t want to suggest the experience is identical). It’s the effort involved, the prior planning and psyching myself up, and the anxiety mingled with excitement, that made the trip feel like a mighty expedition. For a girl who, not so long ago, never travelled anywhere on her own, and at one time was almost completely housebound, this trip is also testament to the amazing power that the correct support has to transform lives. I am much more confident since I started receiving support from Autism Sussex and LIMA (Low Intensity Autism Management). I speak to a staff member  from LIMA once a month on the phone, and this is immensely helpful, as a source of encouragement and motivating coping strategies.

I must also thank my support worker from Autism Sussex. Without these two sources of support, life would be much harder, and I would not be so well equipped to rise above my difficulties. Going to Portsmouth on my own, is a major breakthrough, which took weeks of planning, a lot of anxiety, and a huge amount of will power to complete.

 

 

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Autism and Identity

 

There is a lot of stigma and misleading stereotypes surrounding autism. To name a few, that people with autism lack empathy, can’t be creative, are always unhappy and lonely, can’t be interested in people, and if they don’t need someone at their side at all times, or show any signs of independence, then they can’t be autistic.  No wonder, then, that many autistics try as hard as they can to hide their autism, to try and fit in, and to not show any sign of being different. The consequence of this daily battle to appear non autistic can be a severe erosion of self esteem and confidence, and a feeling that your real self is ‘’dirty’’ and not accepted by mainstream society.

For many autistic people the sense of being different and a stranger in a confusing and chaotic world, has its origins in mid childhood if not even earlier, regardless of whether or not the autism has yet been diagnosed. For example, I did not experience any meaningful friendships and had no friends at all in my peer group until I was around 8 years old, and even when I finally made a friend with another girl in my class, I was regularly on my own in the playground. This was because I found it hard to maintain friendships , and I did not want to share my friend with anyone else. Although it did not bother me too much at this age, I had a growing sense that the other kids in my class saw me as strange and odd.

At secondary school, I became acutely aware of being different. I very clearly remember starting year 7 by saying to myself that my previous bad reputation amongst my classmates would be left behind, and that I would redeem myself by always being well behaved, quiet and polite. I was convinced that this would help me make friends. Unfortunately, however, it became even harder for me to make friends at secondary school because I could not keep up with the complicated small talk, gossip, and teenage group dynamics. I was told by one girl that she could no longer be friends with me because I was ‘’too clingy’’ and followed her around everywhere, and another girl unfriended me because I was too quiet and did not participate enough in conversations.

Therefore, my whole life course has been an experience of unending social exclusion and confusion. The diagnosis of autism spectrum condition when I was 21 years old helped me to make sense of my past and restore my confidence and self esteem. However, I now had to face the stigma that accompanies the autism label. I had faced years trying to hide my autistic symptoms. For example, I forced myself to look people in the eye even when it was uncomfortable, and I subconsciously repressed my inner energy and desire to flap my hands when excited or nervous. Anything that might mark me out as different was carefully concealed and locked away, resulting in great stress and inner conflict.

In recent years, as part of my self healing, I have decided to try and take ownership of my autism, and to not be ashamed of being autistic. To me, autism is a very important part of my identity. Frustratingly, some non autistic people tell autistics that they should not become defined by their autism, and that they are a person before their autism, as if the two can ever be separated.  Because I was so ashamed of being autistic, I used to use this ‘’person first, label second’’ language myself. But with greater awareness and insight, I am beginning to understand that autism is me. Every experience, every perception, every choice I have ever made has been influenced by my underlying brain based difference. Of course no two autistic people are the same, just as no two non autistic people are the same. Upbringing, personality, experiences, and other personal differences all interact with the autism, but the autism pervasively interacts with every other aspect of the person’s life. I sometimes wonder whether the only reason some non autistics are uncomfortable with the autism is my identity position,  is because they have a problem with autism in some way, and wish (perhaps only secretly) that all autistics should aspire to be more like them, that’s to say, more ‘’neurotypical’’. The downplaying of identity also serves to diminish the person’s experience of exclusion, and silences their right to self determination or their right to define their own identity.

I think that all minority groups, for example the LGBT community, asylum seekers, religious and ethinic minorities, face a similar conflict: the desire to integrate with mainstream society, versus the desire to be authentic and not to lose their sense of self. Their identity as being part of an oppressed minority gives them something  concrete to hang onto, as well as giving them access to a community of similar individuals who can offer them self validation and acceptance. The refusal to separate your person from a label, diagnosis, or marginalised ethic group can also result in campaigns and positive legislative reforms. For example, the civil rights movement in America could only come about when oppressed minorities  grouped together under the banner of their identity as gay, African American, or women, and demanded inclusion in society. Women’s groups in the 1960s called this activism ‘’consciousness- raising’’, which meant that women were made aware of their subjugated status in society; their identity as women (and everything that this meant from a political, cultural and psychological perspective) was central to this movement.

I hope that this brief article will make people think twice before they tell an autistic person that they are more than their autism, or that there is more to identity than autism. While on one level, this might be correct, it is also something that does not need pointing out because no self respecting autistic is going to dispute the fact that they are a unique person, and that autism is just one part of their overall identity. Yet autism is an extremely important part of their identity, which has pervasively affected their whole life. And no autistic should feel that they need to downplay their autistic identity by not talking about it or not expressing their autistic desires and needs. This is why I recently bought a t shirt off Amazon with the logo, ‘’autism, a princess thing’’, which I will try and wear proudly and confidently. The logo draws attention to the fact that autism does not just affect boys and men, and that many women are also autistic. Furthermore, in both genders, autism can be pink and cheerful, girly and fun. It is not all about computers, machines, and impersonal subjects, but can encompass colour, glitter and shine.

So I encourage other autistics to wear yourself openly, and for non autistics to learn more about autistic culture and identity.