On being diagnosed with autism

On being diagnosed with autism

l_rhodes January 31, 2019
Share post

“Who do you think made the first stone spears? The Asperger guy. If you were to get rid of all the autism genetics, there would be no more Silicon Valley.” – Dr. Temple Grandin

Last week, I was assessed by a clinical psychologist who specialises in autism. This was after a very long wait: eighteen months ago, I was referred to clinical psychiatry by my GP, who was concerned that my anxiety and depression were signs of something more serious. I saw a psychiatrist after a three-month wait. He, within five minutes, told me that I had autism, despite this being the second time he saw me – the first time, he suspected generalised anxiety disorder.

This came as quite a shock: I’d had a career in politics, in which I had to readily and quickly communicate with the press and constituents; I’ve functioned broadly well in employment; I’d run my own business; I could communicate well with my friends. I had assumed that the psychiatrist was wrong: how could it possibly be that I am autistic? I’d even Googled the psychiatrist to find out more about his credentials and indeed put it down to the fact that he’d previously been suspended from practising.

But as I learned more about the disorder, and reflecting back on the times in which my friends used to joke (perhaps now I know that they may have been hinting) that I had Asperger’s Syndrome, it became clear that it could be possible.

One of my earliest memories is holding a mock General Election in my house – as a seven-year-old in 1997. A seed had been sewn for an obsession about trying to understand how the world works, and from my Stepfather’s perspective, how a (New) Labour administration would achieve this. I remember wanting to make things better for people from being that young. I followed the news obsessively from that age. I recall every element of the Blair years – good and bad.

I didn’t readily engage with other children, preferring to engage with adults in school. I was bullied for being a bit different, for being obsessed with politics and ICT.

At the age of eleven, we got the first family computer. The “computer room” became the place to which I would retire to learn about a new obsession: ICT. At the age of fifteen, I started a web hosting and development business, becoming the youngest managing director in the country at that time. (There are now age limits on directorships, which I’m rather grateful for.) We started with a £50 investment, and, by the time we sold in 2010, we had hit a turnover of £80,000. I’d sell products and services via live chat and I’d utilise marketing techniques that I’d acquired through the need to do so to make money, and to help make my enterprising mother proud of me. She’d always been someone to whom I looked up in this regard: she had previously had her own very successful hairdressing salon, which for people like us meant something.

In secondary school, I preferred the library to the knocking ground, and the consequent surroundings of the geeks with whom I remain friends today.

At the age of fifteen, I experienced my first panic attack. It woke me up in the middle of the night. I was terrified: it does, as the first ones often do, that I couldn’t control my thoughts any more and that I was on the verge of dying. But I kept going, receiving helpful counselling.

In 2005, at the age of sixteen, I joined the Conservative Party because it was the party which, to me, possessed the answers to the country at the time and a one in which would take us into the modern world. Its spirit of enterprise and the fresh-faced David Cameron, who promised – and succeeded – to modernise the party was precisely what it, and the country, needed. I didn’t become politically active until 2009, when I helped deliver a Conservative victory in Amber Valley in 2010.

I’d developed a new obsession as a consequence of business: economics. This became my favourite subject throughout GCSE and A Levels, and I did well in it. I remember my tutor telling me that a paper I had submitted as part of an A Level preparation was “graduate-worthy and beyond the curriculum”.

I went onto university. First, I went to the University of Nottingham to study politics, but the my peers in the halls of residence had made me feel isolated: I wasn’t “one of them”; I was an outsider, or certainly felt like one. I felt like an imposter, that I didn’t belong. I also missed my home and my immediate social circle, so I returned after a term. I later studied Counselling Psychology, something which has permitted me to understand people better on a cognitive and emotional level, achieving a 2:1 in 2012.

Between 2010 and 2015, I worked for the local Member of Parliament as a researcher. This was a job that I broadly enjoyed: suggesting and delivering jobs fairs to help those without jobs in the constituency was something of which I was immensely proud; helping to deliver same-sex marriage was something personal to me; and successfully petitioning the Conservatives in Government at the time to raise the Personal Allowance in Income Tax made me know that we had affected change — change for the good, change for the better, change about which I have cared for so long using my principles. I later resigned my membership due to the directions in which the Party and the country were going.

All of these obsessions are something which boils back down to my original obsession: how to make sense of the world, how to affect change, and how to improve the world. And these are still with me today. They guide my values, which mean everything to me.

I view my diagnosis as something which explains why I am prone to be anxious in social situations, I have to “stim” often (play with things, or shuffle my legs and feet), why when sometimes when I speak, what comes out of my mouth isn’t readily translatable into “neurotypical” language, why I cannot abide the sound of loud noises, bright lights, repetitive noises, or coughing; it explains, also, why I sometimes have an anxious meltdown and why I’ve always had a problem with insomnia. But, more importantly, it explains my attention-to-detail, my absolute determination to see things through to the end, my tendency to recall conversations which took place a decade ago, my technical skills, and – somewhat inversely – my ability to communicate exceptionally well in writing and social media.

It allows me to understand, using click tracking, social media analysis, ideas such as presenting to my former employer and later agreeing to redevelop his website and introducing a feature in that his site now responds to its users’ priorities. It permits me to employ these techniques to know people’s hopes and fears; what they want and what they don’t want. It allows me to use data to see the bigger picture. It allows me to see the world quite literally through a different angle and to approach problems, to create, and to possess long-range vision.

It’s permitted me to go on from politics into the third sector as Trustee for Online Communications for First Steps ED, the East Midlands’ leading eating disorders charity. It’s a great cause, and I’ve achieved a great deal there, including leading on the redevelopment of their website, creating social strategy, aligning strategy with business objectives and learning new skills in how to be a board member of a rapidly-growing organisation.

Seventy-seven weeks later, I finally have my answer. I am, as I have referred to in previous posts, still outraged that the NHS still permits people to wait for such a long period of time to find out what is wrong with them, or indeed give them access to the relevant treatments. This took one year and seven months, though I’m lucky: in other parts of the country, the waiting list to see an autism specialist can be up to three years.

But when I consider myself as a person, I don’t consider autism spectrum disorder as something which holds me back. Of course, there is the anxiety and the miscommunication and the occasional foot-in-mouth moment. There are laughs when laughing is inappropriate, dark humour, and a conscious effort to empathise with people who I don’t already love, or whose lives haven’t been affected in the ways that the people I love have been. I know what struggling is like from my early childhood, when my Stepfather put cardboard in his shoes so that we had clothes (not unlike the old Stella adverts, but he wasn’t buying lager!), just as I know what it is like to have a mental health problem. I know what it’s like to overcome those problems through hard work; but I can also readily empathise with those who cannot do that.

But those things, in the grand scheme of things, don’t matter. In fact, I view it as something which has shaped my life, focus, my values, and how I try to always do good. I might sometimes zone out, make a strange or inappropriate remark, or have to take time away from my desk to recover from something which might, if left there, spark a “meltdown”, but I now know that these are limitations that don’t have to limit my life – working or otherwise.

It’s also allowed me to shake the feelings of “Imposter Syndrome”. I no longer attribute my achievements to other people, or other situations or, magically, nothing. I now know who achieved my achievements: I did, and nobody else. And in this regard, I’m not sure that I would change some of the positive aspects of the disorder which have clearly allowed me to get to where I am in life.

As a final remark, I would like to thank my parents for their patience and perseverance during what has been a difficult period, and my closest friend, Will, and his partner, Chris, without whom, I am not sure I would be here today. I would also like to thank my GP (who I am sure won’t read this) for his diligent care and Cathy, the CEO at First Steps ED for her support.

“I wouldn’t be where I am today if I were neurotypical because I would have been interested in social things. Having a little autism helped me achieve my goals and not miss what most people thought I was missing out on.” – Evan Delaney Rodgers, an autistic politician

If you recognise any of these traits within you, or the wider traits of autism, please speak with your GP. You can get access to help.

2 thoughts on “On being diagnosed with autism

  1. Liam well done, you are a highly intelligent man and this excellent and well written account of your experience will help a lot of other people who are trying to make sense of the world in which we live. When you finally do make sense of it all please come and explain it all to me as I can’t make sense of it either !
    Thank you for all you do for First Steps ED, your expertise is very much appreciated by us all.

    1. Thank you for your kind words, Cathy.

      As closer as I get to understanding the world, some form of black swan event like Brexit comes along to redevelop my understanding of it. That’s where my MA in International Relations will hopefully help!

      You’re most welcome for my work at FSED; it’s a cause that is very close to my heart.

Leave a Reply