Unlearning Embarrassment

[Image description: a yellow flower in front of some stones with some white flowers to the side.]

Autistic children are taught to suppress their natural behaviours. There may be autistic children raised in a way contrary to this, but they are the exception rather than the rule. We are taught to suppress our natural instincts and behave in a manner seen as more acceptable in our society. One of the tools used to coerce autistic people into making this change is embarrassment.

I can speak only for myself when I say that I had no concept of embarrassment before I started school. I was aware that adults considered such a thing to exist, but I did not view it as a feeling I could personally experience. There is ample evidence in terms of videos of conversations with my parents to back this up, should my memory of those early days prove insufficient. But it changed once I started school.

I was actively encouraged to feel embarrassment by those adults around me. Whenever I behaved in a manner (and this was before I was diagnosed, mind you) that was deemed not socially acceptable, I was asked “aren’t you embarrassed?” For a long time, my answer was no, because I didn’t understand the concept. But I started to. There’s only so long that people can say “you’re so embarrassing” before you start to – at the very least – associate the concept of embarrassment with certain behaviours.

And in this way, I was trained to be ashamed of myself, and my nature. I was taught there was something wrong with me, that unless I changed who I was, people would not want to be associated with me and would laugh at me. Which, in our society is unfortunately partly true. But constantly feeling embarrassment about one’s own nature leads to serious problems with self-esteem in the long term, problems I still struggle with today.

I have a lot more confidence than I did in 2014 when I left school… but far less than I did in 2002 when I started. Six-year-old me was a happy, confident child, excited to start school and make new friends. Only a year or two later, I’d completely changed, and it was the attitudes at school which did it. Now, my lack of self-esteem still affects my life on a daily basis as a result of how I was treated then.

This link between embarrassment and low self-esteem seems fairly clear – if you believe that you behave in a way which is shameful, you will not hold yourself very highly and will not expect others to do so, either. Teaching autistic children to be embarrassed is teaching autistic children to dislike themselves. This is something that will stay with us for the rest of our lives, and affect our prospects.

Changing autistic behaviours is seen by many in the neurodiversity movement as fundamentally wrong, and I agree. But it is not only the act of changing the behaviours that is wrong, but also the way they go about it. Some methods used, such as ABA, have been known to cause trauma, but even the less extreme methods, such as encouraging shame, can have long-lasting impacts on the lives of autistic people.

We need to recognise that embarrassment is used as a tool to control the behaviour of autistic children and adults alike, and recognise this as a form of coercion and harm. Autistic people continue to be hurt every day because of internalised shame due to this form of control, and if people are serious about changing the outcomes for autistic people, we need help to unlearn the embarrassment that has been trained into us from childhood.

Assumed Dependence & Going Backwards

Today I’m going to talk about what many would consider one of my favourite topics: independence. No, not for Scotland. Not even for Catalonia. This is about the independence of individuals, namely disabled ones.

There was an incident, probably over five years ago now, when I was in high school that proved beyond a doubt all my criticisms of my high school were warranted. I was speaking to my pupil support teacher (equivalent of a guidance counsellor for the Americans out there). I made what I felt was a throwaway comment about going to the University of Edinburgh open day, and he replied:

“Would that not be a waste of time? Your parents and I have discussed it, and we all agreed that it would be best for you to live at home throughout university, and attend Glasgow.”

Perhaps this is the moment that inspired all the times my fictional characters in writing freeze as their blood runs cold. Because that is certainly how I felt in that moment.

I had no desire to remain living at home during university. In fact, if anything, I had an overwhelming desire to not do that. But in 2013 I was not nearly as confident voicing my opinion as now. So, I let out something unintelligible and ran off down the corridor to hide under the stairs, shaking. A common occurrence throughout high school.

That evening, when I went home, I confronted my parents about them discussing my future with the teachers behind my back. My mother’s response? They hadn’t. The teacher had made it up. A blatant lie to make it seem like he had support when he clearly didn’t. And that whole day of being terrified I’d end up trapped at home forever was for nothing.

Suffice to say, I never trusted another word a teacher in that school said. I was a kid who inherently trusted authority. I am an adult who inherently distrusts authority because of what all my experiences taught me.

In the end, I defied the teachers to attend the University of St Andrews, approximately 80 miles and 3 hours on public transport (if you’re lucky) from my parent’s house. I graduated this year in June with a 2:1. I lived two years in student accommodation, and two years living with actual friends in an actual house. So, take that, Williamwood High School, with a great reputation but where I had a terrible experience.

And now? Yeah, I failed at getting a job, decided I didn’t want to settle for some well-paid but extremely boring job in banking, and now I’m back living with my parents. And despite all my remarkable achievements, that one fact makes it feel like I’ve failed in life. Because all that independence I gained? It’s been snatched away once more.

My mother feels like she can just walk into my room unannounced, harass me to get up, insists on me informing them in advance whenever I plan to go out and frowns if I get back late. I’m doing an online TEFL course so I can go abroad and teach English, but it’s taking even longer cause my father keeps inviting men to do work on the house and chasing me out (and I can’t even go where I want, always with my mother).

I feel like I have gone back in time, and I feel so incredibly trapped in my current situation. It feels sometimes like all my attempts to get out of here are being sabotaged, and just sitting in my room right now, I feel the need to look over my shoulder and check my parents haven’t wandered in despite the closed door.

There are these assumptions that autistic and/or otherwise disabled people are incapable of being independent, and while this is the case for some and that’s okay, treating those who can and want to be independent as if they are unable, and sabotaging any attempts by them to achieve that, is not okay.

I value my own independence highly. For me, all attempts to restrict this feel like an attack. I gained something remarkable over the past four years, in spite of what everyone told me and what I was taught to believe. To lose that again is devastating. I only hope that I can get out of here soon, and in the meantime, perhaps I should invest in a lock for my bedroom door.

The Blame Game

It was January 2007. Several people in my class had been given their first mobile phones for Christmas. My best friend of the time, who I’ll call Jane, had downloaded some ringtone that repeated “Ginger Alert! Ginger Alert!” over and over again. Jane played it when a redhead in our class came near. Mrs P found out and blamed me for being a ‘bad influence’ on Jane and encouraging her to download it.

This was nonsense. I’d never heard the thing before and my parents didn’t even let me take my phone to school. I lost more golden time* than Jane did for this incident.

As a visibly autistic child, I was subjected to many of these incidents, when I was demonised and blamed for things I had nothing to do with because I was different. Sadly, these tales are all too common for neurodivergent people. Society uses us as scapegoats rather than dealing with the real problems, and that has very real and visible effects upon the neurodivergent community.

When the media paints a picture of neurodivergent people as ‘dangerous’, ‘unpredictable’, ‘potential mass murderers’ and advocates for restricting our human rights and locking us up, the natural response is for even the most pacifistic neurodivergent person to be viewed with suspicion by others in their life. Neurodivergent people are blamed for things we did not do as it is a convenient lie – we are expected to be bad, therefore when something bad happens it is our fault.

At some point in that same year, when the weather wasn’t terrible, we had cycling proficiency classes to teach us how to cycle on roads once a week, on a Friday. One ‘Friday’ I arrive at the school and tie my bike to the fence. Jane is late. The other people from my class arrive and tie their bikes up. I notice there is no space for Jane’s. So, I go back to mine and try to make room for hers, in order to be nice. But it’s complicated and it makes me late as well. When I try to explain, Mrs P outright calls me a liar (which hurt even more as I was telling the truth) and I lose golden time.

You know what they say, no good deed goes unpunished.

Unknown date. A boy in the class I’ll call Ross makes a fist and holds it up to my face like he’s about to punch me. I don’t know he’s faking and in panic and self-defence I shove him away from me and run. One of his friends sees. They go and tell the teacher. Mrs P again doesn’t believe that he made the fist and I lose golden time for pushing him.

There were more.

I hated that year, and that teacher. I was made to feel like a horrible, nasty person who couldn’t do anything right. When you tell someone, especially a child, something over and over again they begin to believe it. I began to believe that everything was my fault. I started blaming everything that went wrong on myself. The following year, Jane’s father banned her from being friends with me because I wasn’t religious and I was a ‘bad influence’. I believed the latter, though I found the former quite irrelevant and still do.

I started to compulsively apologise for everything and to everything, including inanimate objects. I felt like everything I touched went wrong. I started to think my existence was harming the world somehow and I deserved all the pain society gave me. I hated everything about myself, and everything that happened was always MY fault.

These days, people are often criticised harshly for apologising too frequently. Articles full of interview tips warn us not to apologise, as it makes us seem weak, uncertain, insincere, etc. Apologies have become associated with negative qualities. They are either seen as an admission of weakness, or as insufficient.

These feelings still persist. When things go wrong I invariably, once I calm down, start blaming myself regardless of who was in the wrong. I will apologise and try to fix things when it is the other person that should be apologising. I let people get away with doing and saying horrible things because it can’t be their fault there’s a problem, it’s always my fault. And if someone does not accept my apology, then it is a sign that I am the worst type of person and should never have been born.

I can no longer (if I ever could, I guess we’ll never know) tell whether something is my fault or not. The subconscious reaction of self-blame overrides everything else and clouds my judgement so much I can’t see my metaphorical finger in front of my face. Which means I am incredibly vulnerable to gaslighting as I will just assume I’m in the wrong. I hate arguments because they mean I need to beat myself up for a week after for being wrong, for starting it because I must be wrong, it’s me, and I am a terrible person.

This is the real effect society’s scapegoating and demonising of neurodivergent people has had on me. The entire idea of ‘different’ being equal to ‘wrong’ that is so prevalent in our society leads people to behave in a hateful manner to others not like them. The effects this has on those on the receiving end can last a long time, even whole lives. You can never tell what effect your actions will have on another person, and you can never tell how long the impression will last.

I don’t know how to move on from this blame game I play with myself, in which no matter what happens I lose. People eventually learn that I’ll blame myself if they leave it more than a few hours, and so nobody ever apologises to me for any wrongs they’ve done. They just wait until I think it’s my fault and apologise to them, and then they win whatever argument was had, regardless of who was right. And sometimes I finally realise this and then resentment builds up – but if I let it out then I just blame myself for losing control.

The truth has been twisted and distorted and thrown out more often than I can count. All these accusations and misinterpretations and unjust punishments in my past have created a future where I cannot see the truth for the self-hatred designed by a teacher who despised me for no reason other than I was different.

 

 

 

*Golden time was the last half-hour of the school day on a Friday where we did ‘fun’ things, but you could lose certain amounts of it for misbehaviour.

The Fluidity of Obsession – Autism & University 3

This is the third and final of three posts I will be writing about my experiences at university as an autistic undergraduate student. These experiences are my own, and do not necessarily reflect those of other autistic students. I study mathematics in Scotland, other courses & countries would vary greatly. You can read the first post about academic structure here and the second about noisy student culture here.

Regardless of your preferred language to describe it; obsessions, special interests, or intense fixations are something that many autistic people have. Many autistic people have the ability to focus very intently on a subject for extended periods of time. These interests can last for anything from a few weeks to a lifetime. In the recent documentary Aspergers & Me, Chris Packham demonstrates a lifelong intense interest in animals.

And how lucky he is, I think to myself as I sit in the university library studying for a degree in a subject my interest in faded long ago. I do not have a single lifelong interest. My obsessions are far more fleeting. I have little passion left for mathematics, my interests have long since moved on to Star Trek and politics and autism. If I had to choose a degree subject now? Probably psychology, maybe ecology, but certainly not mathematics.

My special interests generally last for a month, and become intense and all-consuming before they fade only to quickly be replaced by another. In reverse order from now to back in primary school, I can list politics, autism, Star Trek, Doctor Who, politics again, a book series called Gallagher Girls, vampires, the Titanic, feminism, writing fiction. I have missed some things off the list, so it’s not too long. Politics is the only thing on the list that has recurred.

So what does this have to do with university? For those who have a lifelong interest, it’s a very positive situation. They can do a degree in that subject, follow a career path related to it, and become very successful due to their intense focus on their subject. Provided, of course, that it’s something ‘useful’ in a capitalist society like zoology or mathematics, and not something like Star Trek.

For those whose interests are fleeting and temporary? A recipe for disaster. I will talk about my own experience as someone who has fluid special interests and is studying a degree I lost interest in a long time ago.

When I chose which subject I wished to study at university, I was 17. It was 2013, a year before the Scottish independence referendum, and I was naturally very interested in it. For the first half of 2013, I wanted to study politics and French at university, the latter because I wanted to learn a lot of languages, and I had the top mark in my year in 2012 in the subject. That summer, I attended a summer school at Oxford University for state school pupils, to study French for a week. I didn’t like it. It was so hard, it was much more like English with the analysis of texts and very little language learning. I decided that academically speaking, languages were not for me.

The reason I decided against politics was more complicated. I cannot trust my own memory as I have a tendency to lie to myself, however I will explain to the best of my ability my reasoning. My experiences at Oxford told me one thing: a subject at university will be nothing like at school. I decided that I didn’t particularly want to read the large books my mother, who did study politics, told me I’d have to, and that studying it at university would probably put me off the subject entirely as I’d have to write academic essays on the areas of politics that didn’t interest me. I believe this was accurate, I do not regret my decision to not study politics – it is very likely that doing a degree in it would have put me off the subject entirely.

So I chose mathematics. If I remember correctly, my reasoning for this was that I was very good at it in school, it is a subject with clear cut right and wrong answers, and little ambiguity. I also wouldn’t have to write essays – while I enjoy writing in my own time, usually the minute it became compulsory I no longer wished to do it. And it is a subject with good career prospects, much more than politics. You will notice that mathematics does not appear on the list of interests above. It’s absence is accurate – it was never on the list. My reasons for choosing it are solely those listed above. There was no passion.

I have looked back over my personal statement from my application to university, and while it’s much better written than I remember, I detect little truth in there beyond the factual statements of what I’ve done. I exaggerated my passion, but while most of it is slightly inaccurate there is only one outright lie:

“Overall, my interest in mathematics has existed throughout my school career, however as I have had more and more opportunities to use mathematics outside of the classroom, my fascination with numbers and logic has only grown.”

There wasn’t any growth of passion. Perhaps I convinced myself there was, after all I was a young seventeen year old being told I needed to decide what I was going to do with the rest of my life. I didn’t know what I wanted to do, so I convinced myself I wanted to do mathematics. It’s a coping mechanism I probably still use, though it’s only recognisable in hindsight.

As for it existing throughout my school career? I guess my 17 year old self had a penchant for editing history. I can prove that is not true – in a diary entry from 2011 I distinctly state that I hate maths. I decided to study a subject I had no passion for. It was always going to end badly.

I, like many other autistic people, do have the ability to intensely focus on one topic for extended periods of time. I do not, however, possess the ability to choose the topic. Obsessions choose me, they creep up unexpectedly and overthrow their predecessor and then they’re just there. I watched 700 hours of Star Trek in a little over a year. I campaigned on people’s doorsteps for a Yes vote in a referendum – making eye contact all the time, long before I have the confidence I do now – because that’s what my interest was at the time. I cannot create or destroy obsessions any more than I could energy.

I think that’s where I went wrong at university. I chose my degree subject, I did not let an interest find me. In my defence, I was pressured into choosing before I was ready. My parents would never have let me take a gap year, and my teachers didn’t want me to deviate from the path they had laid out for me. I had little choice but to follow, but now I’ve left them behind, I’m lost, and I have no way back.

My advice for any autistic people (or people of any neurology, really) considering going to university – choose your subject wisely. If you do not have the requisite passion, you won’t do well, and you won’t enjoy it. If you have a special interest in something other than your degree subject, it will consume time and prevent studying from taking place. If you know what you want to do, really know, then I wish you best of luck and I’m sure you’ll do brilliantly. But if you are in any way uncertain, please, please take the time to think about it.

It is better to wait, and delay the future for a year or two, than to set off on a life path you will come to regret. I don’t believe in certainty, the future isn’t fully in anyone’s control and the unexpected can happen. But if someone asks you how certain you are that you want to study a certain subject, if your answer is anything under 90% please stop and think. Your future self may well thank you one day.

Special interests can be hugely helpful in the academic and career choices of autistic people. If an autistic person can study their interest, or get a job related to it then that is a wonderful thing and will help them to thrive. We should be encouraging people to use their interests, especially as it’s probably more likely to make one happy than doing something they have no passion for. On the contrary, making choices to do something one has no passion for can be detrimental to one’s happiness and success.

We need to stop putting pressure on young people to make life decisions to a deadline. If I had waited a year before attending university, I would be much happier now and likely more successful. The pressure young people are put under to follow a certain path can be very damaging. We need to start accepting there are alternative pathways, and not everything needs to be done exactly by the book. Only then can we have a society where everyone lives up to their potential.

Structure Struggles – Autism & University

This is the first of three posts I will be writing about my experiences at university as an autistic undergraduate student. These experiences are my own, and do not necessarily reflect those of other autistic students. I study mathematics in Scotland, other courses & countries would vary greatly.

In school I was accustomed to being near the top of almost all of my classes. And once I could choose my own subjects, that ‘almost’ disappeared. I found academic work easy, compared to the social struggles I faced each day and the experiences of my other classmates. I recall spending one night doing homework for four hours straight that wasn’t due for weeks as I found it fun. The academic side of school was a very positive experience for me (as opposed to the rest of it, meaning my experiences were overall negative).

With this background, I figured that attending a top university would be, if not easy, then at a level I could cope with and do well. This was not the case. In my first and second years of university, I went from bad to worse. I was almost denied entry to honours as my second year grades were very poor. I managed to scrape honours entry on the back of resits last August. Now I’m doing somewhat better but still much poorer than I believed I would back when I was in school.

My teachers would undoubtedly blame this on me choosing to leave home against their advice. I would like to state that this is most certainly not the case. Leaving home has improved my life greatly, allowed me to overcome some fears, and actually given me a social life over and above anything I ever dreamed I’d have. Instead I blame my academic troubles on the stark difference in teaching methods between school and university.

My high school had a very supportive and rigid academic structure. There was a lot of assistance given, and there were clear guidelines on what we should be studying and when. We were given set homework assignments with set deadlines and these were compulsory. I knew exactly what was expected of me, and when it was expected. Under this structure I thrived, partially because of the clarity of the instructions, and partially because of my fear of getting in trouble for not completing assignments!

At university this structure wasn’t just different – it was barely existent. Attendance registers were a rarity and in some modules there was little compulsory assignments to hand in. The majority of mathematics modules have the grades weighted very heavily towards the exam with little or no coursework. Class sizes are generally large, especially in sub-honours, and as such lecturers do not have the time to give feedback on written homework to everyone.

The lack of feedback is likely what hurt me the most. The only way for me to learn from my mistakes is if I’m told specifically what mistake I made. Without clear written feedback I kept making the same mistakes over and over again as I didn’t realise exactly where in my work the mistakes were. I stopped doing non-compulsory work as I wouldn’t get feedback and I found struggling with no hope of getting the answer too stressful to try.

Scheduling time is another part of university life I struggle with. In school there was set hours of classes which I had to attend. In university there are far fewer contact hours and less with every passing year. The majority of my time is expected to be independent study. But how to structure that time? Do I do a set module at a set time? What is there’s an assignment for another module due, do I focus solely on that? Do I make a written schedule? What if something changes last minute? If my written schedule is then broken I may have a meltdown.

The learning environment at university lacks a strict structure. For me, this creates no end of problems. There is less support, less opportunity to get help, and far greater expectations. The sheer quantity of information we’re expected to learn in a semester is too large for me.

With regards to my mental health, the worst part was the shock. There is too much difference between school and university and I was completely unprepared. In between primary and secondary, I attended some transition meetings with other autistic & disabled kids to help prepare me for the difference. Though it’s hard to tell if it helped because of my memories of that time being somewhat sketchy and I didn’t start writing a diary until later, it is possible that assistance with the transition did make the shock of the difference easier to cope with. But the differences between primary and secondary school are much less than the differences between secondary school and university.

With no help over the transition, my only knowledge of the extent of the difference came from speculation, fiction and the experiences of family members who graduated in the 1970s. Since my brain often discards information from unconfirmed sources, this was thoroughly inadequate preparation.

The lack of academic support at university has been detrimental to my grades and my learning, though I do often ‘finally’ understand things after the exam has been and gone, much to my annoyance. The speed at which we are expected to learn is faster than I had anticipated and faster than I am capable of going. Perhaps I could learn at this speed with proper support, but that is not something I have been given.

Though I have recently had an assessment for Disabled Students Allowance (DSA), money cannot buy me time or lecturers willing to give me written feedback. Equipment and software will help in some ways but it cannot help me with all my problems. The teaching methods at university (or perhaps just this university, I have no basis for comparison) are fundamentally different to the way I would like to learn.

I’ve been considering doing a postgraduate degree after I graduate in 2018, partly because I fear that employment prospects for my autistic self are likely to be terrible, and I feel I am adapting somewhat to the teaching methods at university. But I know I would struggle, both to receive a good enough undergraduate degree to progress to further study, and to actually complete one. Though I am interested in further study, I am worried I am not capable of following that path.

The world we live in often seems to think throwing money at a problem will solve it eventually. This is fundamentally false. A better welfare system would reduce the need for foodbanks, but it would not fix the fundamental causes of poverty. The faults in our planet are embedded in the structures of our society, and if we want to fix the flaws in the system we must fundamentally change how our society works, not just change some numbers in a budget.

University is the same on a smaller scale. The teaching methods are often fundamentally ableist and if we want to improve the experience of disabled students and allow more to attend university then we need to break down the structures (or lack of) that harms the learning of disabled people. Only then can we begin to solve the problems.

My experiences have shown that a lack of support can be detrimental to the ability of some otherwise very academically capable students to succeed. Everyone learns differently, and allowances need to be made for that or more and more people will fall through cracks.

Eternal Mistrust and Worry

Throughout my high school years, I tried so many ‘plans’ to make friends, that I ran out of letters in the alphabet to name them with thrice over. I failed time and time again, but the disappointment never stopped being as bitter as it had the first time. In Scotland we spend 6 years in high school (you can leave after 4 but I stayed until the end), and over the first five of those I experienced so much disappointment in my social life.

It seemed that every group of friends I ever made eventually became annoyed and angry at me, for having what they termed ‘temper tantrums’ but were actually meltdowns; for not conforming to social expectations; for just being ‘weird’. I went from group to group like a stray cat visiting houses for food only to be turned away again and again. Everyone else seemed to me to ‘belong’ somewhere – so why could I never find a group willing to accept me?

Some of the friendships did work – for a while. I called it the Eight Month Mark, if I recall correctly – after eight months of making friends with someone, that person would dislike me and never wish to speak to me again. Perhaps by the end, and I’m really not impartial enough to judge the accuracy of this, it was a self-fulfilling prophecy. As the time approached eight months, perhaps my anticipation of the end caused me to self-sabotage. I really wouldn’t know.

In my sixth and final year of high school, I finally found a friend who lasted past eight months. She and I are still friends even though we now live greater than 80 miles apart as she stayed at home and I left for university. It’s coming up on four years from when we first made friends, and that in itself is a miracle. I finally found someone who accepted me for who I am, but it was a long time coming.

Eight months into that friendship I did grow somewhat paranoid, but somehow it didn’t chase her away. But even so, up until very, very recently I always thought that something would happen to tear our friendship apart. I was so worried, because in the back of my mind lay the thought ‘you’ve always failed before, you’re destined to fail again. Nothing ever changes, you’ll always be alone’. And it was wrong (for once).

Since beginning university, I’ve made more close friends who actually accept me for who I am. I spend (probably too much) time with them every week, and I don’t even have to fully mask around them cause the real me doesn’t seem to scare them like it scared so many in school. I’m close with them to the point where I’ve trusted them with secrets I don’t usually tell anyone. I even live with a couple of them, instead of living in student halls, which is something I never thought would happen.

But even given the time when the thoughts in the back of my mind were proved wrong, still I cannot let go of this fear that something will happen to destroy it all. I keep imagining that some of them are angry with me, or conspiring to leave me out cause I wasn’t invited to something – even when the event in question happened at 3am while I was asleep. I can’t get rid of these intrusive thoughts, even when I’m begging myself to stop and just believe that miracles can happen.

Because this is a miracle. A fairly large group I feel comfortable with, that I don’t have to mask around, who actually like me? The stuff of fairytales, my younger self would believe. It’s beautiful and magical and so utterly improbable that even thinking about it can give me a profound sense of joy. I cherish this friendship so much, and it is more than I could ever have hoped for.

But it seems I’m still not able to believe in miracles. I still think everything is going to fall apart and I can’t stop these thoughts recurring over and over. It’s long since past eight months, but still I cannot stop with this fear. Still I cannot stop but think it’s too good to be true. And I am terrified I will self-sabotage again.

The legacy of my time in high school is my eternal mistrust of everything good that ever happens to me. My past is so littered with disappointment that I am incapable of believing I will not be disappointed again. Some people miss school; for me it has permanently damaged me, made relationships with others so much harder than even it was for my autistic self to begin with. I don’t think I’ll ever stop worrying, and I don’t know if I will ever be able to fully trust.

Accepting Myself

I was first diagnosed with Asperger Syndrome when I was 12 years old in my first year of secondary school. At the time, I was given very little information on what this actually was, other than I was different from the others. In my school, difference was rarely seen as a good thing.

I was already teased and bullied at the time, and knew that revelation of my diagnosis would be handing the bullies extra ammunition. I kept it a closely guarded secret from my peers, known only by my parents and teachers. In truth, I was ashamed of my diagnosis. I believed there was something wrong with me – and nobody told me different. Or if they tried, it was half hearted enough that I’ve forgotten even the attempt.

The school signed me up for ‘social skills’ classes, taking me out of other classes to attend them. There were four of us in the class, of different diagnoses, and of those I was the only female. The classes were of little use, teaching a theoretical model of how to use small talk and make friends is of little use in practice. I could (and have) memorised pages of stuff about how to interact with others, but in the moment is is useless.

Considering I kept my diagnosis secret, and I was ashamed of attending social skills classes, I would tell my classmates multiple lies about why I missed this class or that. I don’t remember what I said, but I’m sure it was a mix of plausible and so fantastically far-fetched they were laughing at me for a week afterwards, though I was oblivious.

As far as the ‘secret’ part was concerned, the only part that was secret was the specific diagnosis. In the words of a ‘friend’ whom I mistakenly trusted to share my secret, “everyone knows there’s something wrong with you, they just don’t know exactly what it is” (for full story see twitter thread here).

By the end of secondary school, I had shared my secret with a select few (I think four, though I could be misremembering), one of whom I’m still friends with, the others are no longer in my life. Yet I still thought of myself as defective.

It was only within the last year or so, discovering the online autistic community that I began to realise there was nothing ‘defective’ about me. I was different, yes, but it was not this massive negative thing I’d believed since 2009. I was ashamed in a different way – ashamed that I’d fallen for their propaganda, that made me believe I was something less than my neurotypical peers.

Over the past year, I’ve been on a journey to accepting myself, and understanding myself also. I discovered the idea of neurodiversity, a wonderful concept that says different neurological conditions including autism are normal variations of the human genome, rather than disorders. What I once shamefully believed to be a defect has become a proud part of my identity.

I do not want some miracle cure for Aspergers. Being autistic is part of who I am, and if I was not autistic, I would not be myself. Though it presents me with a large amount of challenges in a world built for neurotypicals, including sensory issues (I had to request a room transfer in my first year at university because of a loud ventilation system that completely stopped me from sleeping while my NT flatmates could ignore it completely), I would never change who I am.

It’s been a long journey for me to accept myself, but today I am here, I am autistic and I am proud.