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Living and working with Asperger’s Syndrome

Blog post   •   Apr 01, 2020 13:40 BST

When I was diagnosed at 15 years and nine months with Asperger’s Syndrome it was hard to conceive the ways in which my ‘Individual Needs Assessment’ would go on to play a role during my Higher Education and how it still continues to shape how I live and work today.

I’ve been told that diagnoses are typically not sought for children around the age I received mine because it could lead to confusion and extra stress around ones forming identity, whether or not this is the consensus in the field of child psychology is both beyond my skills to fathom and interests to try.

From my perspective, I can say this was very much the case, in that I spent the following five to six years blaming every realistic and unrealistic shortcoming in myself on the label that, up until that point I had just accepted as a core element of myself. It felt like I was made up of all the good stuff and everything bad could be blamed upon the Asperger’s, this unsurprisingly left me with essentially zero self-confidence and a whole grab bag of depression.

I’m 26 and a half now, yet in terms of my relationship with my diagnosis I am a completely different person, and the journey I went through before finally getting to grips with it helped prepare me for my more recent journey through gender identity. In the next few paragraphs I’m going to talk about the key points originally raised in my needs assessment and look to how they eventually found their way into effective support mechanisms both internal coping strategies, and into interacting with colleagues, external support providers, friends and family to get the best possible external support.

Black and white thinking, bad jokes and being literal: My first joke, learnt from my parents, taught me rote learning because at the time I just didn’t understand jokes “Three teddy bears sitting in an airing cupboard, which one is in the Army?.... The one on the tank”. It took me until I was around 14 until I got that the joke was funny because it was a pun, but I can’t say that I ever found it funny (and some may say that’s because it isn’t). I was unable to connect the dots and understand that a tank was a military vehicle and could also refer to the hot water tank, more broadly this related to the challenges I had with non-binary/black-and-white thinking.

The best way to explain this is that throw away comments like “not now, I’ll do it in 10 minutes” would have me back in exactly 10 minutes, this is apparently a common thing with children (though I can’t really say from personal experience, not having any) but it was a phenomenon that would keep cropping up throughout my interactions, typically when my brain was disengaged and not actively thinking about what someone might really mean when asking me to do something.

I can’t say I’m past being deliberately literal to prove a point now and then (but I suspect everyone else reading this has done the same at some point or other) but I now reflect upon my instinctual reactions/responses to a situation to ensure that they are comprised and not just of my gut polarised thinking.

Information Processing at speed: My initial needs assessment arose from concerns raised by my family and teaching staff, at the significant disparity between my in-class academic performance and that of being under traditional test conditions, the example here being my initially targeted A Level grades of all As, but me bailing out of my best subjects (Maths/Physics) with failing grades. To my parents (both teachers) this was enough of a sign, especially when coupled with the severe emotional distress (leading to severe physical and emotional outbursts) that only ever occurred away from school and lead the Child and Adolescent Mental Health Services (CAMHS) to be involved.

A key challenge I was facing involved my inability to, under pressure, break down problems or recall key information that I could then use to begin solving them. I have reflected a lot upon the pedagogical approach of the subjects I was struggling with the most, it now makes a lot more sense to me that Physics and Chemistry, (which at A Level, required a significant amount of factual recall) were the subjects that suffered the most in this period.

Upon leaving home and arriving at university my needs assessment opened a whole new set of specialist services to me that would, through four years of academic and pastoral mentoring, develop approaches including Note Taking during Lecturers (such that I could focus upon generalising the content we were being taught) and alternative assessment techniques culminating (much to the chagrin of some of my lecturers) in open book, 1-day long examinations. I have no doubt that I completed my MPhys (Master of Physics) degree in no small part due to the support and passion of the support services that I met at Swansea University Well-being Service, and the (at the time formative) Autistic Spectrum Conditions Service (shout out! You guys rock).

Emotional Reasoning (Empathy): I contest whether the most common interpretation of this ‘common’ feature in ASD (Autistic Spectrum Disorder) is relevant. When I was a teenager, I can agree that the emotional nuance behind people’s actions escaped me and I tried to justify the common feelings of inadequacy. This lack of understanding led me to see people as acting irrationally and illogically. Even then however, I was acutely aware that I was more emotionally receptive than my peers (admittedly *insert stereotypes around teenage boys here*) and would often carry the emotional baggage of someone else’s punishment or ‘year-group uniform scolding’ despite my own perfect uniform until I came home and exploded into a tear'y firestorm of rage at whoever got in my way.

When I got my diagnosis, it was in fact this element that I disagreed with most, despite the stakeholders in the process agreeing with it. It took me until I was around 23 before it finally dawned on me that I was just speaking a different emotional language and that my antenna might have significantly more gain on it than others (hence my admittedly frustrating capacity to take someone else’s stress and carry it around with me). It was upon realising this, that from the aforementioned pastoral support, we starting making breakthroughs; in part because of my analogies that I spent several hours an evening trying to devise in order to explain myself and in part because at this point I’d known my mentor for 3 years, she was pretty good at interpreting me.

Today? I practise a lot of self-reflection. Am I feeling this way because of a source internal to myself or is it external? If it is external is it due to someone else or is it a deadline? What can I do in the short, medium and long term to alleviate myself of these feelings?

Hypersensitivity: This one for me was a no-brainer, yet as a 16-year-old I lacked the words to talk about it. The thoughts in my mind were: “Why does walking into a room full of mumbling voices leave me shaking and lash-out angry?”, “Please don’t make me make a phone call AAARGH” etc. In fact, as I’ve discovered since, these things seem to be common and even my younger brother seems to struggle in rooms with large numbers of people.

It was this exhaustion that initially made me believe I was an introvert… Yet I was constantly throwing myself into situations in which I could interact with people and share in their exuberance and sadness. I even volunteered, me the odd ball with few friends (at least that was how I viewed myself at the time), to be Head of House in my final year.

As an adult I know different, and fortunately it’s more nuanced than just a nice black and white introvert and extrovert binary system. I love working with people, it’s still something that surprises me as I say it, but nothing gives me greater satisfaction than seeing someone master a skill or work together in a group of specialists on some complex problem. I just have to manage my social battery (a cliché metaphor but it works here), I have to respect my limits and make time for myself and for others because that is where true social satisfaction lies.

Difficulty handling/adapting to change: A pattern my parents had noticed was an increase in emotional outbursts when our plans changed last minute… and they tried to keep me in the decision-making loop but obviously I was still their child and life is extremely complicated.

Going away to university was difficult but, also as many people reading can relate, highly liberating and for the first time gave me the opportunity to set my own structural plans and activities, though admittedly when studying Physics, you don’t really get as much free-time outside of figuring out what you just spent the last two hours watching unfold on a blackboard.

As a teenager, change resulted in emotional outbursts, as a university student it became an aversion to anything that added additional stress and started a routine of eating to help myself feel better (a habit I try to fight to this day) which carried on into my EngD (Engineering Doctorate).

The real question is, how did all these experiences couple together to make me the functional human I am today and how has this latest experience of working from home impacted me?

Well the first thing I’d say is that I’m still a work in progress, and I’m glad I got my parents work ethic, plus my endless ambition which keeps pushing me onward. When I was looking for a job after submitting my doctorate, I was acutely aware of the optimal working strategies that I had developed in academia and was up front about them in every interview I had. I openly disclosed my diagnosis of ASD and showcased it as a proper strength, that I’m extremely thorough (Black and White Thinking), I am always thinking about how other people would interact/interpret my actions (Change management, emotional reasoning, empathy) and I’m great at solving complex open ended problems that don’t rely upon memorisation (Information processing at speed).

Change is still difficult, as it is for everyone, and working from home has been a challenge that we are all still adapting to, but one positive is that with the exception of my lovely neighbours, the ambient noise when I am working is much lower when I’m home meaning I’m more productive despite the increased distractions.

The reality of the situation is that in the grand scheme of things, my diagnosis means squat… It let me talk to and work with the right types of people, learn to ask the right questions of my peers and from there I was well equipped to (when equipped with the right support) flourish and reach my goals.

This must be entirely caveat-ed that this is my personal experience and relationship with my diagnosis and should not in any way be generalised or applied blindly to others. One thing that I can say is that applying stereotypes and generalisations onto someone else is not going to help.

by a NCC Group colleague