Diversity in Dialogue – Happy Autistic Pride Day!

A transcript of a speech I gave yesterday for Autistic Pride! (I am absolutely terrified of public speaking, by the way, so yay for trying to overcome my fears!)

“This pandemic has seen a lot of calls for long-overdue change. At home with our thoughts, we’ve all had time to reflect on our actions and challenge existing power structures where they are vessels for systemic oppression – not just the overt kind, but also the subtle, seemingly benign misconceptions that are so deeply entrenched in us that we mightn’t even notice the damage they do to marginalised groups. The most obvious example of this is what’s happening over in the States and the courage of the Black Lives Matter Movement, but even since lockdown began, a lot of outdated behaviours have been called into question.

The five-day working week, a by-product of the Industrial Revolution we’ve now arguably outgrown. Office-based work environments, forcing people to face long commutes for jobs that can just as easily be managed remotely. Our treatment of the environment as Mother Nature thrived with some much-needed distance from her human captors.

Yes, the fundamental landscape of the world as we know it is changing and our concept of what’s “normal” is being forced to evolve, and rightly so.

For those of you who don’t know, today is actually Autistic Pride Day and for the day that’s in it, I’d like to suggest one more candidate for change – that is, our understanding of autism.

I was looking through some old school reports the other day and it got me thinking about my own journey since I was diagnosed with Asperger Syndrome, which is a form of autism, at the age of six. Just in case you think it’s all doom and gloom and we spend our lives staring vacantly into the distance while The Sound of Silence plays in the background, I’d like to share some of that journey with you today and give you an idea of how I got here today.

These report cards I just mentioned were from primary school and I was surprised to see the word “erratic” crop up repeatedly. This confused me and if I’m honest, p****ed me off as I read how this evaluation of me was contextualised. Teachers spoke of how I’d sporadically interact with my classmates for short stints and then wander off to play on my own. But erratic relative to what? Who gets to define this? As far as I could see, I wasn’t harming anyone by being perfectly content with my own company and despite my teachers’ best efforts to entrench their own values of dependency in me, I had a very developed sense of self-awareness from a young age and enjoyed an independence from the necessity of constant human company that most of my peers didn’t seem to share. From where I’m sitting, that’s not a character flaw, that’s a personal asset. An autistic asset, and I owned it. I was and still am proud of it.

Moving on to secondary school, I continued to perform well academically, but my mental health was detrimentally affected by the bullying and ostracisation I faced from my peers, partially on account of my autism and how this made me seem different, which is a terrifying thing when you’re that age and all you want to do is fit in. I did a fair bit of chopping and changing from school to school until I was lucky enough to find one whose ethos, environment and culture worked for me. During this time, there were people who were quick to write me off and had zero faith in me – someone even told my mother I’d never do a Leaving Cert and that she was being too soft on me – but as she so often is, my mother was right (if anyone here happens to know her, please don’t tell her I said that!). She knew I’d follow through, because like so many other autistic people, closure isn’t just a want for me, it’s a need and you can be damn sure that I’ll see something through to the end. No matter what obstacles I face along the way, I’d sooner realign myself and find some way to sidestep them than give up altogether. I may take the scenic route on occasion, but I always get things done and I pride myself on that.

And y’know, as soon as I found a school whose mould was flexible enough to bend to meet me and embrace me for the independent learner I am, I really thrived. At this school, there were complications with timetables and subject combinations which meant that I had to teach myself both History and German for the Leaving Cert while I’d also taken a notion and decided to take up Music as a new subject in 6^th Year, which meant I had a two-year curriculum to get through in just one. Sounds like a lot, right? But strangely enough, that really felt like no biggie to me and y’know why? I had this one thing that all these other schools couldn’t or wouldn’t give me – and that thing was acceptance.

My classmates, my teachers and the whole school community saw and valued me for being my shy and yet somehow eccentric self. The me who wears baggy clothes with mismatched colours and outfits combining every season. The me who gets exhausted in crowded rooms as the conversations happening around me arrive in my ear at equal volume and I strain to filter out the voice of the person who’s talking to me. The me who could deliver a 2-hour lecture on the music of the sixties or any other subject that fascinates me, but prefers to stay quiet and listen in a casual conversation. The me who can’t always tell when someone is being sincere, but is the most fiercely loyal friend you’ll ever meet. I was me, Mel 1.0, default settings 24/7, and that was new. It was like I’d been seen for the first time and for the first time since I’d been aware what autism even was, I was happy. Not just happy in myself, but that holistic, all-encompassing kind of happy that feels so amazing and otherworldly, you wonder if it can possibly exist here on Earth and yet you dare not question it, in case you frighten it away. When you have this most basic ingredient, everything else has the space it needs to fall into place without very much effort.

I did get my Leaving Cert in the end – in fact, I got the second-highest result in the school and that same “erratic” kid those primary school reports described went on to be the well-adjusted adult sitting in front of you today. She has a GPA of 3.9/4 and is on track to graduate in August with a First Class Honours Degree in Politics, German and Irish. I quite like her and I may not always have been a good friend to her, but no matter what happens, I’ll always be mighty proud of her.

My autistic way of thinking has given me the fortitude and resolve to put the blinkers on in the face of adversity and stay the course and looking back, I wouldn’t change a single thing, least of all the moment in my late teens where I chose to embrace my autistic identity rather than see it as a source of shame. It’s been the single most meaningful moment of my life so far and I haven’t looked back ever since.

That’s the power of acceptance and it begins with understanding, which is why I think it’s imperative that the knowledge deficit around autism here in Ireland be addressed and the best way this can be achieved is through dialogue.

So dear neurotypical people: I’ve spent my life listening to you closely, trying to understand you, learning from you and even actively repressing whole parts of myself just to make you more comfortable. That’s empathy if I’ve ever seen it, even though we’re often wrongly accused of not having any. So now we ask you if you could do the same for us. Listen to our stories, learn from us and educate yourself not by TV, not by medical handbooks, but by people. Actual, living people. Warm bodies. That’s who we autistic folk really are, after all – not an -ism, not a neurology on legs, but people – a universal fact that unites all of humanity regardless of where we situate ourselves on this wonderful rainbow of identities that binds this planet together. As one of my favourite autistic advocates Jennifer Cook O’Toole says: we belong first and foremost to the human spectrum and what’s so hard to understand about that?

Think of everything we’ve contributed to humanity – speculation about historical figures should always be taken with a pinch of salt but nevertheless, there’s strong evidence to suggest that Albert Einstein, Isaac Newton, Charles Darwin, Emily Dickinson, Andy Warhol, James Joyce and countless others who’ve made invaluable contributions to humanity were all autistic. How cool is that? And that’s not just a historical trend, by the way – there are plenty of remarkable people who walk this earth today and are autistic, even if they don’t know it themselves, whether they’re household names like Bill Gates or the great many very impressive autistic people I know in my own life. But these voices are being muffled by the social stigma the autistic identity unfortunately still carries. We need a new generation of role models who are loudly and proudly autistic for autistic children to look up to as they explore their identity and choose whether to embrace it for its strengths or shun it for its challenges. In sport, in science, in business, in politics, in entertainment, in our local communities – every aspect of life stands to benefit from neurodivergent innovation. I didn’t have those role models growing up and that’s what I wish for today’s children.

Right here, right now, there’s a whole generation of young adults who were diagnosed as children and hence are the first generation to have grown up with the knowledge that they’re autistic – we’re here, ask us! You might be sitting there thinking – well, she’s nothing like my autistic nephew or my autistic colleague, but that’s exactly my point: my story is mine and mine alone but by sharing it with you, I offer you another perspective that in some ways might correspond to what you envision when you think about autism and in other ways might challenge what you think you know. By sharing my journey, the collective voice of the autistic community who’s been trying for decades to tell you we’re more than these stereotypes, that we’re not Rain Man, that we’re not unfeeling machines, that we’re diverse, that if you’ve met one person with autism, you’ve met one person with autism – that voice gets louder and prouder as the stigma slowly dissolves.

I know I didn’t get into great detail about what my version of autism looks like, but I can whenever, wherever. All you have to do is ask. My goal today wasn’t to give you a crash course, but to prompt a conversation. So let’s have that conversation – reach out to us, as many of us that you can find, listen to our stories, ask us your questions and open up your mind to us. We want not just to be included in this society, but also to include and the more you connect with us in your own lives, the more nuanced, well-rounded and true-to-life your concept of autism will become.

And while we’re at it, let’s change the language and stop talking about “raising awareness”. I’m aware of particle physics. Doesn’t mean I know the first thing about it. Think of other causes where we talk about awareness – Breast Cancer Awareness, MS Awareness, the list goes on. These are all awful diseases I think we can all agree the world would be better off without. But we would NOT be better off without autism – I flatly reject that idea. Autism is not a disease and yes, it is true that autistic people can and do suffer as a result of challenges they face, but by far the biggest of these challenges actually has nothing at all to do with autism itself or the people who live with it. It has to do with how a society that so poorly understand this identity reacts to us and the knock-on effects this knowledge deficit can have on our mental health. And not for a second do I believe there is malicious intent behind this lack of understanding, especially here in Ireland. I think it’s fair to say it’s not a case of not wanting to know, but it has much more to do with not knowing where to start. But why not start here?

We need to broaden our model of acceptable social behaviour to include neurodiversity and as the cloud of this pandemic slowly lifts, we couldn’t have a more optimal opportunity to sit back and reassess which parts of normal we actually want to return to.

Now’s our ideal zero-hour to move beyond performative gestures and take tangible steps to embrace neurodiversity. So let’s be brave. Let’s be curious. And above all, let’s be proud.”

Bang out of (Eating Dis)order

Is my value based only on your perception? Or is your opinion of me not my responsibility?”

This was the scathing closing remark of a video interlude narrated by Billie Eilish and played at one of her concerts last month as part of a thought-provoking monologue around the latent sexism still evident in gendered body standards.

In the moment, I found this message empowering and contemplated how true it rings – as much as feminism has gained ground over the past half century, so many women still put themselves under unimaginable strain (and go to great lengths to make it seem effortless) to attain body ideals that simply don’t exist in the natural world, all for the cheap reward of fleeting moments of approval from people whose opinions of your body shouldn’t even matter.

However, while I can grasp the fundamental logic of what she says, I’d be lying if I said that it resonates enough in the part of me that gives myself tangible orders for me to explicitly act according to these principles, as much as I wish it did.

You see, what started out as a special interest for me as I embarked on a weight loss  journey veered into dark territory and snowballed so gradually into what I now recognise as an eating disorder, I didn’t even know it until a few weeks ago. This is where I’ll attempt to explain it for the first time, as much to myself as to anyone else.

As a kid, I really didn’t care what my classmates thought of me. I had no friends to speak of, but I didn’t see anything wrong with that as I was perfectly content with my own company (or perhaps that of a book – I was once sent to restock the school library after I read every single book they had!). The people whose opinions really mattered to me were the adults in my life, from my teachers to friends of the family calling over to visit. I would recite entire films I’d memorised with careful mimicry of the intonation for each character, delight in their oohs and ahs and try to participate in their conversations at the kitchen table, a task which I was equal to on a linguistic level even if the gravity of the topics (e.g. politics) or the humour wasn’t always within my grasp.

However, the precocious child routine eventually outgrows itself and is no longer cute by the time you hit your teens. You’re no longer bright, but rather a stuck-up show-off just trying to make others feel bad and nothing but the most pronounced efforts at modesty will do to compensate for this strength which has suddenly become a flaw overnight. No, getting good grades isn’t going to cut it anymore. To earn your place and to be worth the time of day to your peers (the new group I realised I was now expected to look towards for approval), you need something more.

I knew there was something about me that repulsed my peers enough to keep a minimum of two seats’ distance away from me in class (or, where there were seating arrangements, to exaggeratively lean away from me at such obtuse angles as to almost fall off their chair). I just didn’t know what the root of the problem was and went about solving it in classically autistic fashion – that is, by observing the other girls, establishing what they have that I don’t and deducing that the acquisition of this missing quality to be the crucial key to finding friends. I didn’t think it was my looks in and of itself – my overall appearance, while nothing special, was to my brutally honest autistic eye no worse than some of my classmates who were nevertheless popular. The one thing that virtually all of these girls had that I was missing was a good figure.

I have never been, nor do I expect I ever will be, skinny. It simply isn’t in my genes. I’ had puppy fat almost as long as I can remember and as puberty hit, this became a more permanent fixture of which even a reasonably healthy, if not consciously frugal diet and more than sufficient exercise could not rid me.

This is why people don’t like you, I realised. It’s okay to be plain or ugly so long as you’re thin, but you’re neither of those things.

The missing link it had taken me so long to wise up to! This was a meteoric epiphany for me and since even my 14-year-old self thankfully knew better than to make any attempt to alter the face she was born with (aside from some make-up misadventures every girl wishes they could wipe from their history!) and realised that no amount of masking would ever fully conceal my social awkwardness, I determined to fix the one thing I did have the power to control.

I knew there had been some sniggers from the girls in the changing room at PE, a fact which made me consistently dread the experience and even led to me eating my lunch while locked into a cubicle in the ladies’ room, like a robber caught red-handed with its swag. Hence, I figured there must be at least some element of truth to my suspicion that there was a correlation between my flab and my much-remarked-upon “loner” status and my field research only served to confirm this assumption in my eyes. Whether I was ever in any way justified in believing this, I’ll never know.

I began to obsessively exercise (mostly by exercising my horses, which admittedly had to be done anyway, but I certainly dedicated more time to it than would have been sufficient) and started skipping meals at school. Quite absurdly, I liked the ache of hunger in my stomach and, believing this meant the starvation was doing its job, found what should have been an uncomfortable sensation quite pleasant. However, I tried to show a normal appetite at home as I was as terrified of my family trying to halt my mission as I was of gaining weight after sending my body into starvation mode. One day, I passed out in a Home Economics class after the waft of the macaroni cheese we were making that day made the room spin until the floor seemed like the ceiling to which my head had absurdly levitated like a magnet. My GP suspected a mild stomach ulcer and sent me home to rest, but even that made me uneasy. Just lying there felt unnatural to me and idleness only afforded me the opportunity to steep in a sense of dread and terror as I swore I could feel excess fat lodging itself to various appendages of my body and distorting my frame. However, this incident did temporarily scare me back into a troubled, yet nevertheless more normal relationship with food and while the intensive exercise regime continued, I managed quite easily to gain back some weight to the extent where I was mildly plump, if not quite 1st-year-plump, by the time I sat my Junior Cert.

It’s worth mentioning here that everything I’ve said so far was tip-of-the-iceberg stuff compared to what came next and I was remarkably good at hiding these early seeds. This was reflected in the fact that only one person (my grandfather) even seemed to notice what was going on enough to call me out on it and the fact that his opinion was humorously dismissed at the time, by both my parents and myself, as a classic example of the grandparent-wanting-to-fatten-up-their-grandkids stereotype just goes to show how dangerously under-the-radar things like these can go, even among the people with whom you live in close proximity.

Transition Year was a rough time for me as the breakdown of the structure provided by academically-oriented classes in favour of activities with a social emphasis left me in a position of vulnerability. The strength I’d exhibited in dealing with bullying and social isolation up to that point suddenly began to erode and I lost all ability to care one way or the other about anything. This extended also to my weight and as I became less and less vigilant, the pounds piled themselves on while I looked on, half-obliviously and half-indifferently. This continued on into 5th year and even after I left this school where I’d been so deeply unhappy, I continued to balloon out.

Whenever I allude to my former obesity in a conversation, which admittedly isn’t very often, I’m often met with the response: “I never knew you used to be heavy!” That’s because I hardly ever left the house during this period. I stayed at home from school, perched myself at the kitchen table and just sat there pretty much all day long. I was completely shut away from society and my mother, probably realising how fragile my mental state was at that time, was careful not to comment on my weight situation. which was quickly accelerating out of control. It wasn’t until the day that I stepped on the bathroom scales for the first time in years and gasped in horror to see that I weighed over 200 lbs that I was frightened and shamed into action.

Despite a slow start, sessions on the treadmill from the privacy of my own home where I didn’t need to feel self-conscious began to pay off and once I dropped into the 90s, then the 80s, 70s, 60s and 50s, the satisfaction these depreciating numbers gave me became an obsession. I’d weigh myself first thing every morning and the trajectory of the figure that presented itself on that little display screen had the power to dictate my mood for the rest of the day. I’d live on BMI websites, using all the available formulae to calculate my ideal weight and what would have to be done to get there. I was, metaphorically speaking, stealing away into the night, putting more and more distance between me and the unhappiest time of my life with each pound that I dropped.

It was in or around this time that I also embarked on the most intense of my special interests to date, one which I still have today – that is, the Sixties: a decade characterised by miniskirts and Twiggy: the woman who made bony chic. I loved the clothes from that era and wished I could look good in them too, but lived in perpetual frustration that no matter how hard I tried, I couldn’t seem to shake the last remnants of excess and attain the bodies my classmates had, even the ones I knew were far from careful in what they ate. By the time I was in my second year of college, progress had stalled and my weight increasingly fluctuated, causing me to adopt even more draconian measures by making my meals even smaller and sometimes skipping them entirely. There were days where I’d eat nothing but fruit and spend hours on the treadmill just in the hope that I’d stop edging closer to that miserable, overweight girl I never wanted to be again. It consumed my every thought: in  class, while talking to friends, in bed at night. And yet the whole fixation still seemed in vain, as in my eyes, I still wasn’t thin.

It all boiled down to that one central perception I’d entrenched in my mind all the way back at 13-years-old: brains don’t really count in the real world and on their own, they’re just not going to be enough anymore. They’ll get you by, sure, but you’ll be alone every step of the way. You want to be enough? Be less. Try 20 lbs less. Or 40. Heck, maybe even 60. Go until you can give no more and if you still can’t look into the mirror without disgust by then, you have your answer: you aren’t enough, and never can be.

Whenever I sat in front of my food and tried to talk myself into enjoying it, fleeting images of key moments that brought me ever closer to this fixation flashed before me like a cliché montage in a film: the hushed, yet somehow shrill chime of laughter from my female classmates once I’d barely left the changing room, my head bowed in shame; “Caitriona woz ere” etched into the chipped, light pink paint of the toilet stall’s cubicle door where I ate my school lunches in hiding; the momentary wince made by that boy I was reluctantly partnered with for a dance competition as he recoiled from the prospect of his knee taking my full body weight, declaring us out of the running on both of our behalves rather than risk whatever awful injury he’d envisioned in that moment. All of these things cut me deeply at the time, but they’re not cuts anymore. They’re scars, and scars last.

To this day, I have considerable stage-fright around eating in company and while the same issues exist even when I’m on my own, the sense of shame reaches overwhelming heights when I have an ‘audience’ (or at least, what feels like one) watching me do it. It feels profoundly wrong and the stubborn instinct of every static muscle in my body has to be fought against for each bite, an effort which makes the whole process completely exhausting. Sometimes I do manage to completely finish my food while out with friends and those are proud days indeed, but it is always overshadowed by guilt and the compulsion to instantly cancel it out by dedicating the rest of the day to exercise.

Please understand that leaving food behind, especially while eating out, does deeply upset me – I realise the gross amounts of food the developed world wastes while vast populations unjustly starve, and the thought of contributing to that makes me feel sick. I hope this understanding might someday will me out of this inexplicable state of paralysis enough to unapologetically stomach that final mouthful without my thoughts being consumed by swells of unsightly fat and other, equally haunting images. Perhaps it will soon, for I’ve never wanted more to have a healthier coping mechanism in times of vulnerability than now, as I face a time characterised by isolation, the breakdown of the familiar and graduating into an uncertain world which suddenly has fewer employment prospects to offer me. However, trying to make sense of this obsession and where it came from seems like a good place to start. Even as I sit here writing this and acknowledging these issues for what they are for the first time, I feel lighter and less alone. So thank you, Reader, for hearing me out and here are three take-away messages I hope everyone will keep in mind when they think about eating disorders:

1. I cannot emphasise this enough: you DON’T have to be underweight to have an eating disorder! This misconception is a big part of why it took me so long to realise this also applied to me and being average/overweight does not exempt you from the very real self-esteem issues that come with it.
2. People with eating disorders aren’t just looking for attention – as soon as the fainting episode made me realise my family might start copping on to my issues, I threw all my efforts into initiating a recovery: not for me, but for them as I didn’t want to cause them any more worry than I already was. I’ve gone to great lengths to hide my issues from the people in my life and only very few people have seen through it, which brings me to my final point:
3. Eating disorders can very easily go unnoticed, even when it’s right under your nose. Especially since I haven’t consistently lived at home for almost four years now, I don’t believe my mother suspects a thing even to this day (let’s not forget, even I didn’t until recently!). I’ll tell her soon once I’ve had time to come to terms with it myself, but it’s important to know that it’s not always staring you in the face. (Especially not in my case, since, as an autistic person, my eye contact isn’t great!)

The necessary isolation that comes with this period of social distancing (though I must admit that the move to e-learning has been a positive thing for me as an autistic and dyspraxic student) will be challenging for me as everyday interactions provide a welcome substitute for the profound loneliness I feel on account of my difficulties making close friends, a childhood legacy I haven’t manage to shake just yet. However, I’m determined to find alternative crutches to lean on during this vulnerable time and laying this out has been helpful in exploring how I might do that. As George Harrison would say: all things must pass.

2020 Vision: My Survival Guide for the Roaring ’20s

Happy New Year and welcome back to the Roaring Twenties! Everyone over to Gatsby’s mansion and we’ll dance the Charleston!

Sorry, I digress … After an extended leave of absence from this blog to focus on my studies, I finally have the most precious resource of time to reflect on everything I’ve gone through these past three or four months, acknowledge both my pride and my thanksgiving for having come through it in one piece and eagerly look ahead to what this new decade promises for me.

The past semester was certainly not without its obstacles, which is only to be expected in the final year of a 4-year degree but for which no amount of preparedness can remove the edge. In facing these challenges head-on, I learned so many invaluable lessons I have every intention of carrying forward to the rest of my studies and life in general. Above all else, I believe I’ve come to understand the autistic aspect of my identity far more intimately than ever before and by getting to know my true self that bit better, I have learned to push my strengths harder and be comfortable enough to know and admit my limitations to myself, thereby giving myself the breathing room I desperately need but rarely allow myself due to my perfectionist tendencies. Anyway, here’s my advice to myself as I start out in what will be by default the defining decade of my life:

 

1. It isn’t a cop-out to ask for accommodations

As I’ve said many times before, I’m a relentless perfectionist, which alternately works to my advantage and to my detriment. Despite my being registered with my university’s disability services department, I have always stubbornly refused to ask for even the most minor of supports with my autism as the basis. Having gotten by for so long in secondary school with exactly the same opportunities and support my neurotypicals received, getting any kind of help, no matter how small and no matter how desperately needed, somehow felt like cheating and made my conscience uneasy. Any outcome that came of it would feel unearned to me and in truly Irish fashion, I’ve always clung by some force of magnetism to the “no pain, no gain” formula for success. It should hurt, I told myself, that’s how you know you’re doing it right.

I also tend to feel intense guilt when I see former classmates from school working part-time jobs to get them through their degree and managing to keep a hectic social life afloat while I have all the time in the world to focus exclusively on my studies and still manage to experience a paralysis around assignments and coursework which I always mentally translated to inexcusable laziness. I could never study and hold down a job at the same time (at least not with significant time management supports), but there’s no shame in acknowledging the limitations of my executive functioning and thinking better of pursuing a course of action that would likely compromise my mental health and lead to the mother of all burnouts, from which the recovery would be slow and difficult. That isn’t selfish or entitled, as I previously thought – that’s being reflective, sensible and self-aware.

I’m getting to know my limits, making my peace with them and taking ownership of them in the knowledge that asking for accommodations isn’t a cheap excuse or “playing the autism card”, but rather the right thing to do in fairness to myself, who has been stretching herself thin from Day One to meet the same expectations as other students, but with added hurdles which many of these students won’t have to face or even notice. The more I challenge the inner voice that tells me I’m inferior just because I don’t and sometimes can’t always go about things the same way as most of my peers and have a lot of catching up to do in order to be worthy of a decent future, the greater the strides I will make.

 

2.  Never underestimate the power of network and community.

This one is an age-old cliché by now, but by this I mean so much more than exploitative networking to professional ends, but rather emotional and moral support from neurological peers, or as I like to think of them, my “tribe”, in times of strife. I wouldn’t have survived last semester had it not been for the priceless support of the Autistic Paddies, a group for autistic adults founded by the ever-amazing Joan McDonald who continues to be the social genie for Irish autistics by keeping us all connected, be it through the group chat online or regional meet-ups. Among this group’s many incredibly diverse members, many of whom I’ve had the pleasure of meeting in person, I’ve always had someone to whom to turn in a crisis and from whom I could expect both immediate, rationally actionable advice and unconditional understanding. Whenever I found myself in sticky situations or unfortunate pickles which couldn’t possibly have been foreseen or helped, the group would be the voice of reason to my panicked, irrational despair and we would always find a way forward together. Conversely, I try to offer advice and emotional support wherever I can when someone else in the group is going through something difficult. The Autistic Paddies are my adopted family and since I was welcomed into the fold early last year, I’ve become prouder and prouder each day to belong to a community which is so centred around mutual support, respect and compassion. Once you’ve found your tribes, things do get a whole lot easier!

 

3. Respect your body – it can do incredible things and deserves proper care.

One of the most harmful consequences of my hyperfocus and my blindness to everything else in my life in the pursuit of perfectionism in my coursework is the toll it can take on my health. This semester, I burned out like I never burned out before and it happened earlier than ever before. Despite this, I ignored every desperate signal my body was giving me to slow down and stop pushing it so hard, which meant it continued to get worse as I graduated from wilful ignorance to genuine distraction. At the end of the semester, I was able to do the unimaginable and plunk down on the couch with the same involuntary vigour with which Donald O’Connor famously collapsed after dancing himself to utter exhaustion on the set of Singin’ in the Rain  – but at what price?

I took a close look at myself for the first time since I started back at college and took quite a fright. My eyes seemed to be dwarfed, whether by the dark, almost charcoal-like lines underneath them or by the sheer strain of intense revision. My complexion was as pale as a sheet while my skin had broken out quite noticeably, making me wonder how long I’d walked around looking this sickly without realising it. If I’d been sick, I was too consumed by the anxiety of falling short on my grades to notice it and that wouldn’t be the first time. After this fright, I thought about all the incredible things the human body can do – heal itself when wounded, restore and regenerate overnight, have just the right amount of everything it needs to keep you going if you give it the food and exercise it needs. It’s a miracle worker and it deserves more respect than I’ve been giving it recently, so I’m learning to check my impulses and refrain from pushing it too hard, which is difficult but necessary. I hope I’ll see the benefit soon!

 

4. Quell the catastrophist in you and pass the mic to the self-assured woman who realises her own value.

Over the past month or so, I’ve already developed some practical strategies to prioritise my wellbeing and temper my self-confidence. For example, I took a break from Instagram before my exams in December, mainly so I could whole-heartedly dedicate myself to studying but an unintentional by-product of this process was the realisation that the break did my mental health the world of good. Since this mini-epiphany, I’ve been conscientiously spending less time not only on Instagram, but also on social media in general. In the absence of the demoralising impact of being fettered to (literally) incredible airbrushed dimensions where everyone is 110% perfect and expects to be regarded as such, I find the yoke of self-loathing unhitches itself somewhat from my being. After all, I never did train as an ego masseuse!

Additionally, seeking sensory input that I know to be soothing to me is always a game-changer when it comes to anxiety, sensory stress and low mood. For me, music makes everything instantly better and will always be an object of my fascination. On New Year’s Day, I walked out in the pale blue freshness of the evening, hit up my Spotify downloads for the perfect soundtrack and came upon an Eagles compilation. That familiar catalogue of chilled, wistful country music that was a staple in my family’s car repertoire and instantly transports me back to laidback, carefree summer drives from my childhood. Ideal for an anxious Annie like myself. I could not help but be comforted by the sunny idealism of the lyrics, even if always laced with a characteristic hint of melancholy. Things fall to pieces and you’ll run out of luck eventually, but it’ll all work out okay, so what does it matter? What’s the point in worrying and projecting yourself onto a future that will someday be a past in which you were never truly present. This year and this decade, I vow to participate and let a balanced version of me I can look back on with pride flourish. As the Eagles themselves would say:

“Lighten up while you still can, don’t even try to understand, just find a place to make your stand …. We may lose or we may win, but we’ll never be here again. So open up – I’m climbin’ in!”

My Special Interest: The Swinging Sixties!

While there is a tendency to fixate on the challenges of day-to-day life for autistic people, there is also a unique set of strengths that comes with being ‘wired differently’, the neatest of which is our ability to latch onto a niche topic (or ‘special interest’) and become not just knowledgeable, but rather a walking encyclopaedia in that area. Sadly, this talent for absorbing vast stores of information in meticulous detail is often criminally understated in the public domain.

And what’s my special interest, I hear you say? Well, I have many as a matter of fact, but I would certainly consider the centrepiece to be my long-running fascination with all things to do with the Swinging Sixties. Writing for AsIAm as part of their brilliant feature celebrating the Irish autistic community’s special interests, I discuss how I discovered this passion and why it means so much to me. Check out this link and do give it a read!

Being a Team Player: Sporting Diversity and Inclusion

“And now over to our US correspondent in Washington D.C.”

We all know what comes next. Those first few awkward seconds before the handover reaches the ear of the reporter, during which he simply nods and smiles obliviously into the camera while we viewers wait for him to close the gap, were always a source of great amusement for me as a child. How stupid these people look, I thought, not with any genuine malice, but rather with a puerile smugness that I harboured knowledge, even if only for a matter of seconds, of which these learned men in silk ties weren’t yet in possession. I laughed about it back then, but now, I think it’s the perfect metaphor to describe how having dyspraxia, a developmental condition that is often co-morbid with autism and affects coordination and motor skills, impacted on my physical health growing up.

I didn’t always know this was the case. In fact, this is a very recent epiphany I arrived at while working on Pride Month with Vodafone, my current employers. As Dublin was playing host to the Union Cup, Europe’s largest LGBT+ inclusive rugby tournament, it fell within the remit of my role to promote and communicate the significance and relevance of Vodafone’s sponsorship of the tournament to colleagues. In preparation for this task, I did some research and soon came upon the sad truth that was likely the reasoning behind the establishment of a league such as the Union Cup – that is, the worrying trend of avoidance in the LGBT+ community when it comes to group sports and overall physical activity. Statistics from a 2016 survey by Sport England showed that only 17% of the LGBT+ community are members of a sports club or team while LGBT men and women are 22% and 11% less likely respectively to be active enough to maintain good health compared to the general population. A likely cause of this is the disturbing prevalence of homophobia in sporting settings, with 84% of LGBT men and 82% of LGBT women reporting having homophobic verbal abuse thrown at them while participating in a sport.

Now, what does all of this have to do with autism or dyspraxia? Well, quite a lot as I realised while chatting to some colleagues recently over a cup of coffee. Our conversation took an odd, untraceable tangent, as typical conversations so often do, and somehow, we ended up talking about the Paralympics and how much more engaging they are to watch compared to the Olympics, all on account of the steely determination and willpower of these incredible athletes, on a mission to show the world how brilliantly, inspiringly able they truly are. As I was aware before I’d even signed my contract that I was coming to a workplace which not only tolerates, but also welcomes and even encourages the presence of neurodivergence in its workforce, I disclosed my autism at the very start of my application journey; hence, while I don’t shoehorn it into a conversation to which it doesn’t belong, I have made no secret of my autism and it is by now common knowledge among most colleagues. In fact, this very knowledge was what prompted my colleague to ask the question that acted as catalyst to my epiphany:

“And who are the sporting heroes from your community, Melissa? I can’t say I know of any myself, but perhaps you could educate me.”

I was stumped. Fumbling in the back-drawers of my mind for the name of an autistic soccer player, cyclist, rower or even jockey, I realised I was coming up blank each time and was flabbergasted as to why this was the case. However, as the conversation went on and I had time to chew on this revelation, it suddenly made all the sense in the world as it dawned on me that the world of sports is yet another area in which the challenges and prejudices faced by the LGBT+ and autistic communities seem to overlap.

In my experience, sporting success and my social rating have always been inextricably linked. As far back as my first tennis lessons in primary school, where our instructor whose appearance and detached demeanour reminded me of Anne Robinson from The Weakest Link made us play warm-up games of ‘Cat and Mouse’, it was painfully obvious that I hadn’t the balance and motor skills to execute the sharp turns with the same speed and agility as my classmates. ‘Duck, Duck, Goose’ was a routine humiliation whereby I was the sorry wretch in the middle in all perpetuity, not to mention Sports Day, where I was pitted against the two other petite, light-footed girls in my class and would always come last by an embarrassingly large margin.

Where does neurodivergence come into all of this, I hear you say? Well, for starters, my reflexes aren’t always the most reliable, often causing me to react to certain stimuli much later than you might expect. This is where the dyspraxia really kicks in: you see, that momentary misalignment between what my brain is telling me and what the rest of the world already knows as described in my opening analogy is precisely what happens in my mind when, for example, a tennis ball hurtles towards me. If I swing when my brain decides it makes the most sense to do so, it will be too late and the ball will have already smashed against the bottle green mesh of the court enclosure. Eventually, through a series of semi-private lessons at the local tennis club, I learned to pre-empt this belated neurological signal and prepare to swing before the ball had even landed on my side of the court, meaning the connection between mind and body had been made by the time the ball had reached the lattice of my racquet. Of course, this meant not only having to pre-calculate the trajectory of the ball before it had even made contact, but also working contrary to the brain I am supposed to trust with everything, but I adjusted well to this approach and even became reasonably good as time went on.

Furthermore, to this day, my brain goes into a panicked frenzy at the very prospect of having to spontaneously learn the rules to a game with which I’m not already familiar as my relative slowness to grasp the gist of the game has traditionally led to frustration and bewilderment for all involved. A classic example of this was my first and only summer camp, where I was introduced to camogie (a pretty unique Gaelic sport that’s probably best described as a cross between lacrosse and hockey). As the only child without prior experience, I was embarrassed at my inability to master the jab lift and eventually resorted to rolling the sliotar onto my hurley from the ground while knowing full well that this was against the rules. I like rules as much as the next person, but I was being made into a laughing stock and I wanted to make the whispers and giggles at my expense stop, so desperate times called for desperate measures. Needless to say, that particular endeavour to stop providing the other kids with cannon fodder for their ridicule did nothing to achieve my objective and the derisive snorts continued. Damned if I do, damned if I don’t.

From primary right through to secondary school, I was always picked last for teams. Now, while not an outstanding athlete by any stretch of the imagination, I was certainly a far cry from lousy and given how much more seriously I tended to take whatever sport we were playing that day compared to the other gossip-preferring girls, I, speaking pragmatically, should have been more of an asset than a hindrance to the team on the whole. Hence, my non-existence until it came to a point where I really must at least be seen to belong to one team or another wasn’t by any means a comment on my sporting ineptitude, but rather an assertion of my otherness and remoteness from what they saw as the universal human experience. They just couldn’t seem to relate to me, though I wouldn’t go so far as to say I was a mystery to them as this would imply a curiosity about me that simply wasn’t present.

However, my sporting potential wasn’t entirely lost on my PE teacher, who immediately zeroed in on my height and arrived at the ridiculous conclusion that this would automatically make me the ideal shooting guard for the junior basketball team. Though I personally felt of most use to the team back in zone defence, where my height could be utilised to much better effect by blocking shots and catching rebounds, who was I to argue with the coach? So, feeling flattered to be singled out for my potential and grateful for the excuse to fill up lunchtimes I’d otherwise be spending sitting alone in the canteen or avoiding the caretaker for the chance of solitude inside the locked school building, I joined up. However, what followed was four years of exclusion, scapegoating and bullying of both a physical and psychological nature from my teammates, both on and off the court. I finally called it quits after Transition Year for the sake of my mental health and though I enjoyed the sport in and of itself, I left the experience feeling utterly demoralised and dissuaded from ever touching team sports again.

Horse-riding, meanwhile, was a much more enjoyable outlet for my pent-up anxieties and became something of an obsession for me in my early teens. Having originally taken it up on recommendation from my physio on account of my unusually straight spine, I soon found myself competing with my local Pony Club branch all over the country. Though I encountered the same social difficulties there as in all walks of life, the fact that it was only my four-legged best friend and I when the time came to hit the open field made it refreshingly easy to forget that my team were counting on me and if I duck a fence, knock an oxer or halt unevenly for my dressage salute, it has the consequence of skewing our overall score. I was never in it to win it and only went for a thrilling day out, which it most certainly was on most occasions!

My brief competitive career as an equestrian in pictures!

At the age of 17, however, I could no longer own horses for circumstantial reasons and as the cost of hiring horses out for the day is astronomical to put it lightly, I took a significant step back from my one athletic crutch, the consequences of which emerged with frightening speed. By the time I turned 18, I weighed over 200 lbs and while I don’t think I grasped the full extent of my obesity at the time, I was aware of how hideous it made me look and I felt miserable. However, I was too scarred from my previous experiences in team sports to take one up again and too terrified of being laughed at by trying my hand at a new sport to do anything about the sorry state my physical and mental health was in for quite some time. It was only after I stepped on the scales for the first time in years and gasped at the reading that I was shocked and guilted into action, taking up the attractively individual-centric pastime of walking and soon progressing to running. By my second year of college, I had thankfully managed to shed almost 60 lbs and reach a healthy BMI. While I still carry a little flab, physical exercise is now an integral part of my everyday life and I can’t imagine my life without the buzz it gives me!

However, I do believe that mine is a cautionary tale as it causes me to wonder how many other autistic or dyspraxic people were ostracised or jeered at on the playing field for their lack of understanding of game rules, for their slow reflexes or simply for being different. Everyone and their mother knows of the benefits the endorphins released by regular physical exercise has for your physical and mental wellbeing and, conversely, how physical inactivity can take its toll not only on your body, but also on your mind; hence, though I have failed to find any metrics around the autistic community and participation in sports, I can’t help but feel that this is something that has slipped under the radar for longer than it should have and some initiatives should be explored to help autistic people feel more welcome not only to participate in teams sports, but also to feel that we genuinely belong and are valued both as a team player and as a fellow human being.

As was made clear by the Twitter hilarity that recently ensued regarding Jacob Rees-Mogg’s ignorance of the diversity of England’s World Cup champion cricket team, there is as much to be said for diversity and inclusion in every arena of life, be it on the playing field, in the workplace or in our courts and parliament chambers. At the end of a match, it is customary to shake the hand of your opponent as a mark of respect: if you can show that to a person of whom you’ve just done everything in your power to get the upper hand, then I can’t imagine it being an unbearable strain to do us the same courtesy by reaching out your hand in an act of sincere brotherhood. The time has come to embrace your neurodivergent teammates not in spite of how differently they think, but because of it. And who knows: in a few years’ time, there could be a whole new generation of autistic sporting role models whom future autistics can grow up looking up to!

I’ve Got to Have Faith!

Since it is Autistic Pride Day and I am too tired/lazy to conjure up something original, I’m going to reblog this post I wrote awhile back around the theme of faith, self-belief and pride – qualities I’d love every member of the autistic community to realise within themselves and be allowed to freely celebrate without being accused of arrogance. So Happy Autistic Pride Day, ladies and gents – there’s a great deal to be proud of looking back, and plenty more to come!

Aspie & Me: A Self-Portrait of Asperger's

“Melissa, Melissa – I really wish you’d have some faith in yourself!”
Even as I sit now and write this post, I can vividly recall these words and the exasperated shake of the head that accompanied them. They came from my maths teacher as I emerged from my junior state exam, all in a flurry over a question on the paper that had thrown me slightly. I, as was my habit, happened to finish my exam far too early, and humming and hawing over the inelegant figures I came up with for this particular question, made the fatal error of using this surplus time to doubt myself. I rubbed out what I had and tried alternative methods until I got a ‘cleaner’ figure, so to speak, and as soon as I left that exam hall, I sought out my maths teacher, who I knew would be waiting outside expectantly, hoping…

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We’re With You, Aoife

I am shocked, confused and utterly appalled by the fallout of an incident involving a prominent member of our community this week.

The controversy in question, which has been making national headlines over the past few days, can be traced back to the English paper that kicked off the Junior Cert exams last Wednesday. To provide a little context for international readers, the Junior Cert exams are the Irish equivalent to the GCSEs in the UK, i.e. a set of state exams that you take when you’re around 15. English is always the first exam and among the reading comprehensions that featured in this year’s paper was an abridged and edited excerpt of an article penned by Irish comedienne Aoife Dooley. This article was part of a series circulated by The Irish Times whereby people were invited to write about their biggest “pet peeves” in a creative and entertaining way. Being a comedienne, Dooley naturally opted to utilise humour to express her unsavoury sensory experiences while using public transport, from her profound aversion to the stench of crisps and deli foods (110% with you on that one, Aoife – frankly, I’d rather smell pig slurry) to the inevitable pretentious commuter who feels the need to broadcast her phone conversations to the entire bus. The original piece, as featured in The Irish Times, is both hilarious and delightfully relatable.

However, it’s amazing the difference the odd abridgement here and word substitution there can make, for better or for worse. The comedic essence of the authentic, untouched piece, which enables readers to proceed with the understanding that this hyperbolic account is to be understood as harmless humour and nothing more than that, had alarmingly diminished by the time it left the State Examinations Commission’s editing room. Clearly, no offence was intended and the piece was to be appreciated as a drole observation of human behaviour as it coincides with the hustle and bustle of 21st-century life, but thanks to some woefully poor word substitutions and insufficient context, the article that appeared on the Junior Cert English paper underwent a rather unfortunate tonal transformation. This resulted in quite a few Junior Cert students not taking kindly to Dooley’s commentary, which they saw as an affront to perfectly reasonable behaviour which they likely engage in regularly themselves. The result was a barrage of insulting and threatening messages being hurled in the direction of Dooley’s social media accounts. Any question of the inflammatory comments in question having nothing to do with Dooley’s autism can be eliminated simply by reading how horrifically explicit these teens were in stating the object their hostility:

Ms Dooley said she was warned that she would have “bricks thrown through her window” and have her “legs cut off”, while another message said she would be so badly beaten that she “won’t be autistic anymore.”

It is worth mentioning that quite contentiously, the crucial cuts and changes mentioned above were made without Dooley’s prior knowledge or consent. This is perfectly acceptable under Irish copyright law and given the circumstances, at least somewhat understandable. However, while I cam understand the necessity of cutting out passages for the sake of brevity, the implications for altering the qualitative content of a piece, especially when these changes are made by someone besides the original author whose understanding of the piece is therefore incomplete and subject to divergent interpretations, are potentially life-changing, as has sadly been the case with Aoife Dooley. Not surprisingly, the backlash to the article from some Junior Cert students has had a profoundly negative impact on her mental health and has caused her to no longer see social media as a safe space for her.

Tweets by Aoife_Dooley

 

This is the story of our lives. When we try to express ourselves in a way that is true to how we perceive the world, it is far too often taken out of context and hence blown out of proportion. Why? Because people, unwittingly or otherwise, take the things we say and do and try to align us to their own context. Then, when the mismatch becomes evident, they label us “rude”, “ignorant” or “lazy”, all without making the least effort to step back and try to compose a picture of our context. No, the irony isn’t lost on me, either.

However, I deeply admire Dooley for the astoundingly strong and empathetic manner in which she has dealt with this awful situation. Her consideration of these kids’ futures by opting not to name them publicly, even though they are all old enough to know that hurling abuse at someone is never okay, is really quite remarkable. Instead, Dooley is using the great deal of hurt this fallout has caused her to fathom the new dangers that face children of the cyber-generation, whose digital fingerprints are documented everywhere they go online:

“I know that most students are not sending abuse, and many have sent supportive messages, but this type of bad online behaviour could come back to haunt them in the future. It makes me feel that it must be quite scary to be a teenage girl.”

Honestly, I’ve been completely taken aback by the ferocity of the backlash to Dooley’s authentic and completely valid sensory experience. Here. In 2019. While it is true that she only discovered she was on the autism spectrum last year (two years after the article was written) part of me wants to believe that the backlash might not have been quite so severe had the article description on the exam paper stated that Dooley was autistic. Would it have been, though? It has always been my impression that I was raised in a country that’s notably tolerant and accepting of autism in comparison to other parts of the world and in spite of misinformation and a lack of authentic knowledge about autism among the general Irish population, I genuinely believed that most people have the best of intentions towards us. Now, I’m not so sure what to believe and I’m starting to question whether my faith may have been naïve or misguided.

However, one belief that I doggedly cling to, no matter what crisis or adversity threatens to shake me off, is my faith in the fundamental kindness of all people, even those who hide behind a façade of arrogance or cruelty. That’s my lifebuoy and it is so effective in keeping me afloat because it’s not simply something I want to be true, but something I know to be true. We are good. Life is good. And Aoife – while those nasty comments may never lose their bite, I hope that you, too, may always keep this in your sight. In the meantime, we’re all with you.

 

Sources:

https://www.irishtimes.com/life-and-style/people/sound-off-don-t-get-me-started-about-other-people-on-the-bus-1.3279050

https://www.rte.ie/lifestyle/living/2019/0104/1020299-aoife-dooley-on-being-diagnosed-with-autism-at-27/

https://www.irishtimes.com/news/education/comedian-who-appeared-on-junior-cert-paper-subject-to-online-rape-threats-1.3917233

 

Mini-Marathon, Mega-Fun!

Little-known fact about me: I’m quite the Forrest Gump. I know, you’d never think it by looking at me, but within the comfort of my own home, I spend hours at a time on the treadmill as a way of spending the excess of hyperactive physical energy I always seem to have.

Why is this little-known? Well, even though I love running and often use it as a crutch to help me disengage from the demands and strains of daily life, I refuse to run in public, where there may well be witnesses to the comically uncoordinated manner in which my limbs flail about.

So, as my index finger hovered hesitantly over the keyboard as I registered for my first mini-marathon and was asked whether I’d be running, jogging or walking it, I couldn’t quite swallow my self-consciousness hard enough to click “running”, despite knowing I was likely up to it on a physical level. Far more important to me than a physical challenge, however, was the opportunity to raise funds for an organisation whose mission is very close to my heart. AsIAm.ie, as Ireland’s leading autism charity, has proved to be absolutely invaluable in educating the wider Irish public about autism and encouraging a culture of acceptance, inclusion and empowerment for the autistic community in Ireland. This has been and continues to be achieved by providing us, the autistic community, with a platform through which our voices, too often silenced in favour of “experts” and professionals in matters concerning us, may be heard.

Before this organisation came into being, I felt desolate and so incredibly alone. I knew nobody else on the autism spectrum and since my only frame of reference was myself, with whom I was perpetually disgusted as a teenager, I went to great lengths to shun every aspect of my identity I thought might “out” me as autistic. However, thanks to the incredible work AsIAm have done since its inception, I’ve been enabled to embrace my autism as something inherently positive and the part of me perhaps most worthy of embracing in the first place. This remarkable organisation couldn’t have come round at a more ideal time as the first generation of us to have been diagnosed as children are now grown up and find ourselves in our early twenties, perhaps the most transformative decade of our lives and one which will likely be littered with crucial crossroads that can be difficult to navigate, even at the best of times. By facilitating free community support events, speaking at schools and helping an ever-increasing share of interested agencies facilitate an accessible, autism-friendly workplace, there is no end to the strides made by AsIAm to eliminate stumbling blocks and inhibitions for the Irish autistic community and afford us the breathing space to be who we really are without fear of judgment. Knowing what it has done for me and has likely done for countless others, I cannot begin to imagine a worthier recipient of the funds I set out to raise.

As it happens, I was coming to live in Dublin that same week for work purposes anyway (which I’m super, super excited about!) and although I don’t start work until tomorrow, I arranged to move up the night before the mini-marathon so I could get the “lay of the land”, so to speak, while also saving me the stress of travelling on a packed train or bus. When I first registered to do the mini-marathon, I didn’t even know of the existence of the job I (very much to my surprise!) ended up being offered, never mind that my start date would happily coincide with the race. So, I was incredibly lucky the way things worked out and I cannot imagine a more spectacular start to my life in Dublin!

On race day, I woke up from the most glorious night’s sleep I’ve had in years, courtesy of the new duvet and pillow I’d bought the evening before. Life is good, I thought to myself as I stretched, had a shower and got dressed. Eager to soak up the pre-race atmosphere, I headed in to the city centre in the morning and sought shade from the intensifying sun in the technicolour sanctuary of St Stephen’s Green, whose array of floral colour was bolstered on this special day by the amassing all-woman army of whites, purples, and reds with the occasional dash of neon yellows, oranges and blues. Many of us there for a charity whose mission we believe in and every one of us belonging to a team. Even those running for themselves were at the helm of their own team and united by a fundamental self-faith that they can do this race. Today, everyone belongs. The prefix “dis-“ -“dyspraxia”, “dystrophy”, “disability” – was splashed everywhere across partakers’ T-shirts, but as it rippled with movement, I felt it gradually fade into obscurity until it lost all its meaning. Today, everyone can.

All the while, a budding atmosphere of anticipation was rising as people pinned race numbers to one another and carefully rearranged the contents of the transparent VHI backpack with which we’d all been provided. Spontaneous cheers and rounds of applause occasionally filled the air as groups gave each other energetic pep talks and it would have been exceedingly difficult not to be carried along by this infectious air of excitement. In fact, I spent the entire morning walking around with an involuntary, out-of-context grin pasted across my face. Except on this particular day, it wasn’t out-of-context at all. This same excitement seemed to carry us like an instinctive tidal wave towards the start line and it was at this point I began to fathom just how vast the crowds were. I began to get a little anxious, for I had yet to find my friends who’d travelled from elsewhere in the country and thought my chances of locating them in this enormous horde were dismayingly low. However, we did eventually track each other down and now that I had my team by my side, I was raring to go!

Being near the back of the walker group, getting to the start line was a gratingly slow process. While the “weirdness” of my run means I seldom, if ever, do so in public, I don’t have this same issue with walking. In fact, the frequency with which I walk the roads has apparently made me into something of a landmark in my hometown and locals often joke to me that they always know I’ve returned to college when I suddenly stop passing their window every day! However, I am virtually incapable of “strolling” and find I need to walk at a brisk pace in order to keep my balance. Needless to say, “power-walking” is all but impossible in a crowd that large, so it was inevitable that I would get in some people’s way and clip the odd heel.

At the start, this was frustrating as my clumsiness and awful motor skills are something I try hard not to let show in day-to-day life, but it soon became clear that today, everyone’s clumsy – in a crowd of Ploughing Match proportions, it’d be pretty damn impressive if you weren’t! Freed of my last remaining inhibitions, my friends and I politely ducked and dodged our way up the never-ending column of women until we reached an opening where we could dictate our own pace. Before, we knew it, we were almost at the head of the walking group and could see the joggers ahead of us and with some breathing space, we relaxed into a stride that suited us. The sky was just beginning to cast a grey marble sheet of cloud over us as we approached the finish line and many of us responded accordingly by picking up the pace or starting to jog. Just over 2 hours later, my friends and I crossed the finish line, which wasn’t half shabby considering we started out at the very back of the pack!

By now, I’m running out of adjectives and superlatives to use while describing my first mini-marathon, but let it suffice to say that it was an exceedingly positive one! The entertainment en route, with corny motivational songs and us being encouraged to sing along, was brilliant. I did have to down some paracetamol to combat a growing headache from the constant drone of the loudspeaker and the drummers were a bit much for me personally. But that’s just me and my hypersensitivity to noise and I can appreciate why they were such a big hit with the other walkers! The chats and general craic I had with my friends as we made our way around made the 10K, which even before the race I realised would be over in a heartbeat, absolutely fly by and I certainly wouldn’t have enjoyed the experience near so much if it weren’t for their amazing company!

Also, the race was incredibly useful for me on a practical level in that it acted as an orientation of sorts for me, a Class A culchie who’s making our nation’s capital her home for the next three months. Essentially, it was like a walking tour of the city centre and as someone who prefers memorising landmarks to trying to understand maps, it was a great help to see with my own eyes where X is in relation to Y.

To top off what was already a thoroughly enjoyable day, my friends and I made our way back up Baggot Street as soon as we grabbed our medals and finisher’s T-shirt, where the folks at AsIAm very kindly provided us with food and drink. Being me, I was incredibly awkward at first, especially after my friends had to leave early to make their way home. However, I needn’t have worried, for Team AsIAm couldn’t have been more welcoming and vocal in their gratitude. Even though I didn’t know any of these people, they went out of their way to include me and once I got talking to them, I instantly felt at ease. Though the music in the background was far too loud for me to pick up what was being said to me first time round, never mind keep a conversation going, I nevertheless felt completely comfortable, which isn’t something I’m usually able to say about any social situation! It was the perfect end to an amazing day and I arrived home that evening without a shadow of doubt in my mind that the money I’d raised was going to the right place.

 

For more information on AsIAm, I’d strongly recommend that you visit their website at www.asiam.ie .

 

 

Your Europe, Your Choice

Tomorrow, we Irish voters go to the polls (as the flashy, neon roadside posters making rural Ireland look like Times Square have ensured we don’t forget). With canvassers galore wandering from door to door, there has been a great buzz surrounding the local elections in the past few weeks. However, without belittling the importance of the local elections, I’d like to stress that the elections to the European Parliament, also taking place tomorrow, equally deserve our attention.

 
According to a 2017 survey by Eurobarometer, Ireland is the most enthusiastic member state about the future trajectory of the EU, with a staggering 77% of respondents affirming their faith in the European project has not been shaken by the succession of crises with which the EU has been confronted over the past decade. However, Irish turnout figures at the 2014 European election belie this supposed investment in a shared European future with a mere 52.5% of eligible voters casting a vote. Compare that to the 2016 general election, which saw an overall turnout of 65%. I understand the growing apathy to some extent: the EU is an abstract, seemingly inaccessible body that no one, not even the experts, seems to fully understand. Even as I watched the Primetime debates for my constituency, I was disheartened by many candidates’ conflation of European policy-making with local issues, whether by genuine ignorance or by design. However, the European Parliament has become an increasingly influential institution over the past few decades and as co-legislators in regulations and policies which affect us a lot more than we might realise, it is crucial not only that we use our vote, but that we know what our vote means.

 
Before the polls close at 10pm tomorrow, there is still plenty of time to inform yourself about what’s at stake. Read up on the European Parliament and what it does. If you already have particular candidates in mind, find out what party grouping they belong to in the Parliament and what this grouping stands for (they don’t line up as neatly as they do on national level). Watch the debates for your constituency on RTÉ Player. Or perhaps most helpfully, check out http://www.whichcandidate.ie/ , an amazing tool developed by the politics department at my home university which helps you determine which candidate would best represent your beliefs when acting in a legislative capacity as MEP.

 

As a whole, the EU is a very far cry from flawless, but unless we do our bit and directly participate in this incredibly unique transnational electoral process, the like of which exists nowhere else in the world, is it quite fair to dismiss the whole concept as democratically deficient? Democracy requires participation, and we haven’t been participating. This is a flaw of our own making, and one which can easily be made good. The 24th May: you know what to do.

 

Sources:

https://ec.europa.eu/ireland/news/irish-most-positive-about-eu-eurobarometer_en

http://www.europarl.europa.eu/elections2014-results/en/turnout.html

https://www.independent.ie/irish-news/election-2016/analysis-election-2016-voter-turnout-34493145.html

 

 

‘The Good Doctor’ (2017) – Review

Since it first aired in 2017, what little I have read or heard from the autistic community about ‘The Good Doctor’ has been decisively negative. Indeed, this fast-paced medical drama centred around the trials and tribulations of Shaun Murphy (Freddie Highmore), an autistic surgical resident who also happens to have savant syndrome, was subject to a barrage of complaints. From what I’ve seen, critics of the show largely seem to bemoan yet another stereotyped portrayal of an omniscient autistic genius whose “superpowers” serve to dehumanise him and set him apart as another beast entirely compared to the people with whom he tries to build warm, viable relationships. This concern, misplaced or not, is all too familiar when it comes to the already sparse instances of autistic characters on television or film. This, combined with my general distaste for medical dramas, which tend far too much towards melodrama and predictable, soap-operatic formulae for my liking, resulted in my initial hesitation to give the show a shot. However, I recently decided it deserved the benefit of the doubt, mainly because I’ve such a soft spot for Freddie Highmore and even if the rest of the show is terrible, his performance is always such a joy to watch.

And boy, does he shine in it. I know actors are just doing their jobs like anyone else and are often being paid a bucketload to do so but holy crap, I’ve nothing but utter admiration for Highmore. As a British NT, he has so much going on at the same time when he’s in character as Shaun, from the subtle mannerisms to the upward vocal inflections to putting on a flawless American accent. He’s clearly done his homework and seems to have a pretty well-grounded understanding of autism. I unfortunately don’t know a lot of other autistic people, but his performance seems completely credible to me. However, actors can only work with what they’re given, so major kudos to the writers for doing their research. It shows. I’ve heard the show’s very medically accurate and while I’m no authority on that matter, I did feel that Shaun was an authentic portrayal of a young man on the spectrum. Emphasis on the word “a”, for all involved with the show have stated time and time again that Shaun isn’t, nor should he ever be, an attempt to represent everyone on the spectrum.

For me, the big draw is the inherent likability of the (autistic!) character around which the action centres. Shaun isn’t self-serving, doesn’t care about promotions or one-upping people and doesn’t have near as much ego as the other characters. He’s in this business because he wants to save people, not for the sake of his ego or being a saviour, but simply for altruistic reasons and beyond that, he has no agenda. The simplicity is so refreshing! This shone through in one scene in particular, in which a patient witnesses Shaun having credit stolen from him and bewildered by his lack of objection, asks him incredulously, “don’t you want glory?”, to which Shaun simply responds, “I want a surround-sound for my TV”. Shaun is blunt about his job being a means to an end and the short-term nature of his ambitions, taking everything a step at a time and never really thinking too far ahead into the future, be it in his career or otherwise. However, while Shaun has a genuine appreciation for the gratification he receives from grateful patients and their families, he appears to have a higher regard for the life he has just saved, watching this character, with goodness at his very core, develop and grow as a person makes for some heart-warming TV.

And what’s more, so many of Shaun’s experiences ring true with me, from being selectively needed and abused by someone he thought was his friend to the insistence of people around him, albeit with the best of intentions, on interceding for him in a life he considers himself perfectly capable of feeling his way through without outside help. He wants freedom to make his own mistakes and autonomy to design his own life as he sees fit as only he can know what’s best for him. Mentors, while amazing figures of support, can often be unwittingly disabling by encouraging you to take an exaggerated look at your limitations and thereby preventing you from taking steps you feel ready to make by insisting you’re not. While it is true that no man is an island and all of us will need somebody’s help at some stage in our lives, only you can know what’s best for you and hence, it should be for you and you only to determine when help is needed. Shaun stands up for this right in the course of Season 1, and this storyline is a perfect example of why finally having an autistic adult on our TV screens (an elusive demographic compared to the much-more-TV-friendly autistic child or teenager) whose struggles we can closely identify with is such a positive, if long-overdue, step in the right direction.

Thematically, it’s so nice to see a show about an adult with autism for a change rather than children or teenagers – and it deals explicitly with workplace prejudice and employment issues, no less. It’s about time! It’s so great to see more and more companies becoming interested in being Equal Opportunities employers and valuing what we bring to the table. Employment issues are very real for people on the autism spectrum and the debate this shows seems to have opened as to whether Shaun would have been hired in the first place if this were a real-life situation shows both the distance we have yet to go to arrive at a place where autistic workers can expect the same respect as their neurotypical colleagues and the encouraging willingness to open up a dialogue about changing the future trajectory of this issue for the better.

Furthermore, I welcome the balanced portrayal of Shaun as someone whose bedside manner is sometimes a little lacking and occasionally struggles to understand the feelings and motivations of his patients, but through the richness and wisdom of his own human experience, also can empathise and connect more with some patients than any of the other surgical residents. He sees some of himself in these patients, and even when this is not the case, he makes a sincere effort to arrive at a place of understanding by trusting in the outsider perspective of his colleague Claire, who acts as a balancing force where Shaun does find it hard to relate to a patient’s experience. It is a common misconception that autistic people lack empathy and the sooner that particular myth’s dispelled, the better.

I also enjoy the surprising ambiguity of the show’s title. What makes a “good” doctor? What does it mean to be “good” in this context? Talented? Virtuous? Just? Shaun is arguably all of these things at various times and is quickly learning that these virtues aren’t necessarily synonymous with one another in a world full of blurred lines and grey areas. I love how moral conundrums are explored in this show, from issues of consent, culture and personal values to the limitations of bedside manner. It is simply fascinating to see what happens behind the scenes in the inner workings of a hospital, not only in the operating theatre but also in the boardroom as governance, ethical and legal matters are parlayed back and forth and each faction passionately defends their stance.

Aside from the central debate as to whether an autistic person, even if high-functioning, is truly up to the highly demanding tasks required of a surgeon, ‘The Good Doctor’ also delves into several other topical workplace issues such as the #MeToo movement, for which I salute the writers. The support characters, from Shaun’s social skills confidante and colleague Claire Brown (Antonia Thomas) to his grumpy-but-kind-hearted father figure Dr Glassman (Richard Schiff), are quite well-developed. It’s nice to see Antonia Thomas (whose American accent was so spot-on that it took me two episodes to realise I’d seen her before, albeit in a far grittier setting, in Channel 4’s ‘Misfits’) get a breakout role in the States, for she certainly deserves it.

However, that’s not to say the show doesn’t have flaws or things I just didn’t buy. For example, the initial antagonism of the sceptical attending surgeon Dr Melendez (Nicholas Gonzalez) to Shaun did feel quite forced and pantomine-esque, while Dr Glassman’s insistence that Shaun is “not Rain Man” rings true neither in his treatment of him nor in the conception of Shaun’s character as an autistic savant, a trope that has already been given disproportionate representation in entertainment industry’s depictions of the autistic community. However, while this was a big part of why I was so hesitant to start watching the show, I was honestly okay with the savant thing for the most part. We aren’t knocked over the head with it and it’s made perfectly clear that Shaun is not infallible and is susceptible to human error just like anyone else. Despite his moments of brilliance (which his quick-thinking and highly innovative fellow residents also have, and with almost the same frequency), Shaun can and does make mistakes and as his savant abilities aren’t over-utilised as a plot device, I’m willing to look past it. Let’s face it, it’s a major part of the show’s premise and part of why it works so well.

 

Some small details I liked:

• The infinity symbol in the opening credits! It’s wonderful to see more and more people embracing this as the go-to symbol for the autistic community as opposed to the jigsaw puzzle, insinuating we are remote, mysterious figures that have to be ‘solved’ or even (shudders internally) ‘cured’.

•  “He more than earned the right to be here. He has had to get past people like you and their prejudices every step of the way” – this line from Dr Glassman, advocating on Shaun’s behalf to Dr Melendez, resonates so much with me as I know that so many people, mostly people who were oblivious to my autism but it wouldn’t have made any difference even if they had known, also wrote me off at various stages in my life without waiting to see if I could prove them wrong (spoiler alert: I did). Here, it may seem like Dr Glassman is fighting all of Shaun’s battles for him while Shaun continues to allow his colleagues to walk all over him, but I cannot stress enough that this is not the case at all. We are so deeply socialised into believing brute force and egotistical, alpha-male methods of assertion are what constitutes “strong” that it is easy to forget there are a number of kinds of strength. There’s a quiet, steadfast kind of strength that is purer and more enduring than any kind of façade, and endurance is something Shaun has by the bucketload after decades of proving people’s presumptions wrong simply by being his good self. It may not seem like it, but Shaun has been fighting tooth and nail in the course of the season to assert his right to respect in the workplace by staying true to his gut, trusting in his own capabilities and most importantly, by quietly showing his prejudiced colleagues that they are wrong to write him off and be blinded by preconceptions. Shaun is a striking contrast to the other male characters, where every scene feels like – pardon my French – a p*ssing contest. He is a vessel for absolute truth and to me, there is nothing more beautiful than that.
  

• Shaun’s unenviable backstory, though almost comically far-fetched, does shed light on an often-overlooked truth – that is, that coming of age with autism does not preclude exposure to a traumatic childhood just like any other kid exposed to the same environmental factors. On top of the exhaustion that comes with interacting with a world you don’t understand but so dearly would like to come to understand, autistic children also often have to contend with traumatic experiences such as domestic abuse, the breakdown of the family unit, bereavement and, perhaps most commonly, bullying. Autistic people, too, can come from broken homes and have issues that exist entirely independently of their autism. The world doesn’t stop for anyone and having everyday difficulties of your own does not automatically make you immune to the challenges life indiscriminately throw your way. We all have hurdles in life we’ll have to overcome and this is just one of many things that unites all of humanity, autistic or otherwise. This is why we, just like anyone else, want and need support from loved ones as we feel our way through life.

• Speaking of the flashbacks, I appreciate the nice detail in that Shaun’s haircut has not changed at all throughout the years, a nice nod to autistic people’s preference for sameness.

THE GOOD DOCTOR – “Trampoline” – As a barroom fight sends Dr. Shaun Murphy to seek treatment at St. Bonaventure’s, Dr. Alex Park and Dr. Audrey Lim disagree over an elderly woman’s post-operative symptoms. Meanwhile, Dr. Neil Melendez and Dr. Lim make their romance public, and Dr. Aaron Glassman continues to pursue a relationship with a good friend, on the season finale of “The Good Doctor,” MONDAY, MARCH 11 (10:00-11:00 p.m. EDT), on The ABC Television Network. (ABC/Jack Rowand) FREDDIE HIGHMORE

• Also, Shaun’s triggering into the flashback sequences is tastefully done and I appreciate how they show him more frequently having shutdowns (whereby he retreats into himself and becomes momentarily oblivious and unresponsive to the outside world) than meltdowns when he is overwhelmed. The violent and aggressive aspect of sensory overload is often over-sold in the portrayal of autism, be it regarding fictional characters in TV or film or real autistic people in the media, leading to harmful, erroneous perceptions of the autistic community as a danger to society.

• “They don’t all know each other!” – Dr Lim (Christina Chang), who is low-key the MVP of most episodes if you ask me, shutting down Shaun’s fellow resident Morgan (Fiona Gubelmann) when she discovers a patient is autistic and automatically turns to Shaun as if he possesses a textbook as to how to deal with said patient was hilarious. Shaun’s being mildly offended that people expect him to be an expert on dealing with autistic patients as if all of us on the autism spectrum are the same and come with a handbook only we are in possession of was incredibly relatable and also says a lot about the knowledge deficit in the medical community when it comes to disabilities. If this wasn’t part of their training or their curriculum at med school (a travesty in itself) and since the residents are often shown to proactively research innovative solutions in this, you’d think a little self-education wouldn’t be a huge ask, especially when there has been more than one episode with autistic/otherwise disabled patient. Asking an autistic resident to deal with an autistic patient is both lazy and dismissive of the diversity the spectrum represents. Shaun makes a genuine effort to understand neurotypical patients, even if he, in their place, would be indifferent to what motivates them – is it really so much to ask that neurotypicals make the same effort for us on occasion?

• As much as I like Lea, I was worried as Season 2 progressed that she’d become the Jenny to Shaun’s Forrest Gump, but the finale shut that notion right down in a spectacularly brilliant fashion. I had to chuckle, and for the right reasons! You do you, Shaun – you deserve choices.

And finally, some memorable quotes:

• “I prefer it when people don’t read my emotions – they’re mine.” – Shaun Murphy (Season 1, Episode 17).
• “I’m a person” – Shaun Murphy (Season 1, Episode 17). Highmore’s delivery of this line was incredible – completely devoid of pity, and yet pregnant with a seed of self-faith he quietly hopes others will someday see in him should they give him a second look.
• “It’s amazing how accomplished you are for someone with ASD!” – (Series 1, Episode 7). Okey dokey, I’m just going to ignore those last four words (uttered by a father to an autistic patient, no less!) and focus on the truth in the rest of this statement. Yes, dear sir: it’s amazing what we can achieve given half the chance.

Anyway, this whole review has been in an incoherent mess, mainly because I’ve had too many thoughts on this amazing show to string them together in a remotely linear fashion. So, allow me to sum up:

Call me crazy, but I love ‘The Good Doctor’ and overall, I am so glad I decided it give it a chance!