Understanding my Autism and why Autism awareness matters

I was mulling this post over for World Autistim Awareness day on the 2nd April, but then I came across a sobering statistic: Autistic adults are 9x more likely to die of suicide, and autistic children are 28x more likely to think or attempt suicide (source: Autistica). So I'm putting this out there now!

And before I go further, it probably helps to say "Hi, I'm Tom and I'm Autistic".

That sentence has got a wide-range of replies: from genuine interest, to being told "no you're not", and to the beautifully, bittersweet reply from my mother of "that makes me feel so much better" (parenting a child that is dislocated from conventional thought is emotionally heavy -- sorry mum!).

My diagnosis was last year, and since then I've been seeking out more and more information. And it's surprising that, the more I connect with the neurodivergent community, the more I realise how commonplace it is for us "high-functioning" or "Aspies" (I'll address those terms shortly) to be met with a wall of misunderstanding, and sometimes hostility because we are able to adapt (to mask) well within society. I point you back to the statistic: the pain and struggle is real!

I'm a very open person -- it's a by-product of my condition, I feel -- and I've always struggled most when I cannot be the true version of myself. So I'll try and articulate the feeling that caused me to break down in tears (of joy) when I finally got my (paid for (: ) diagnosis:

(A short interlude on the labels and my personal feelings: "Asperger’s" (an Aspie) is named after a horrendous human, so I avoid that association; "high-functioning" is frankly patronising -- imagine adding "high functioning" in front of any other group under the diversity banner! I resonate with "neurodivergent": quite simply, my mind and thought processes are divergent. That said, there clearly are levels of Autism that are more acute, and I am fortunate to be in the bracket (level one) where adapting to society doesn’t tax me beyond my limits. I don't seek to represent those whose life is tougher, nor do I feel my pain is anywhere near theirs.)

My early childhood through to the end of secondary school was acutely painful. I always existed on the fringes, watching as others could engage socially with ease, while I was on the side-lines trying to understand the rules of how they did that. Invariably, there would always be a point (pretty early into things) where the rest would clock on to the fact that I wasn't 'normal'. I wasn't without friends, but rarely were they in my peer group -- older and younger children tolerated me much more. It wasn't just my peers, either. I routinely would get into trouble for being "flippant", "pedantic", "obtuse" or "stupid" when answering teachers' questions: the way I answered questions was not "correct" (I still get it now!). The way my brain needed to work through thought patterns would get my teachers lost -- and I was even accused of cheating because I would put down answers with seemingly incomprehensible leaps of logic. Needless to say, I was consigned to the bottom set in most areas. I scraped though with five GCSEs and an overwhelming feeling that I was stupid.

Looking back, I feel sad that the patterns were not seen earlier. In Junior school, there were literal jaw-drops when I scored the highest grade in the Science paper for SATS; in secondary school, people couldn't believe I got an A in IT. At 6th form I remember being predicted U, U, U and how that really took me to a low point: I nearly gave up there and sabotaged myself significantly, but even in disengaged mode I got my B (IT), C (Business) and D (Drama -- A in acting, Unqualified in coursework). I always defied predictions, but people just assumed I was lazy.

Then I went to university and things changed. Firstly, part one of my neurodivergency journey was to discover I was dyslexic and get the required support. The most significant part, though, was the fantastic lecturers at my university who would take the time to explain things to me and talk through the logic -- I was finally able to work through my thought processes with someone, and that was such a helpful part of my development of my internal translation service (understanding how other people approach and need to see logic). I consistently hit the top grades and suddenly became the person people went to for help. Through explaining things to my peers, I furthered my own strengths and capabilities at communication (while also working on this in a retail job in a subject I love: video games). I gradually developed the skill of translation, which was the start of my journey as a business analyst. I got my 1st at university (and again cried) and finally found my groove in life.

That really takes me on a fast-forward near 15-year journey as a Business Analyst -- a career where my job is literally translating the thoughts and needs of others, challenging assumptions and fostering understanding. A life spent in translation has found me a career path where I am a fish to water; where my neurodivergent mind adds value, and -- thankfully -- where I have been so lucky to work with enough autonomy and trust to flourish. But it was a painful journey to get here, and it is a daily exercise for me to suppress my triggers as well as communicate in a way that others can understand me (and for me to be able to understand others). It still causes me issues, and there are often moments where people don’t get me, or I miss the subtext, but overall, my Autism is a positive force in my life. It’s slightly scary to be so publicly open about it, but my hopes are that this contributes to the wider awareness of the subject.

I want to be clear here: this isn't about "othering" anybody. This is about trying to bring Autism and neurodivergencies into the conversation so that they are better understood. Let’s bust the stereotypes, drop the “disorder” from our labels, and understand that, in a world where we always seek to “think outside the box” that there is large community of us who have never had that box to begin with! We should seek to discover how this potential can be unlocked in our school system and workplaces so that others have less pain in adjusting. The numbers at the start are sobering and we need to open the conversation to address this.

And to those that struggle to reconcile me as an Autistic: I see the attempted compliment, but it's damaging to me and the wider point of awareness. Check through the above or reach out to me -- I'll gladly talk about it (I'm quite fixated on my topics of interest!).

:)

(I want to be clear that these views are my own, from my perspective and experiences. The neurodivergent community doesn’t fit into a single viewpoint. I in no way am seeking to diminish the pain of others who find adjusting harder, nor do I wish to trivialise their experiences. Please reach out if you resonate or feel I need to adjust these words!)?