Autism, they said ...

Two important moments happened to me this year, 2024.

1) On the 23 May, I got on stage in front of approx 400 of our customers/prospects and sang an AI modified version of "We Will Rock You" to the crowd, getting them to join in, provide the backing track and sing along to the chorus :)

2) Earlier, on 12 January, I received a diagnosis that I have Autism.

Unrelated perhaps, but a core part of the evidence to my diagnosis were important life events I have experienced; such as ... I never spoke until I was about 5 years old, I have always been shy and an introvert, I have struggled reading peoples intent (are they joking or serious?). There is so much I am learning about autism but getting on stage for two years running to break ice and inject fun was a personal victory and a triumph of my ability to overcome my "core programming".

What's about to follow is possibly one of my longest linkedin articles I've ever written. Should you get to the end, I am very thankful. My goal is just to put down on paper what the autism diagnosis has meant to me.

Brief History of Autism

Here's my non-scientific summary, please take it with a pinch of salt.

Autism as a concept has been prevalent for many years, however it wasn't formally recognised in science until the 20th century. For many years the Austrian scientist Dr. Kanner was believed to be the pioneer, until another Austrian, a certain Dr. Aspergers work was discovered and made famous by two British Doctors; Dr. Gould and Wing. All these scientists based their research on studying children (and in some cases those children as they became adults) who behaved "differently". Versions of the research from these scientists became the basis of the DSM - one of the official diagnostic criteria for autism.

It turns out though that (un)knowingly all these scientists research was superceded by Dr. Grunya Sukhareva from Ukraine who documented a lot of concepts in 1924. The DSM itself is currently on version 5, and mirrors a lot of Dr. Grunya's work. The DSM-5 was published in 2013.

The DSM-5 focuses on two overlapping concepts:

• Impairment in Social Communication and Interaction
• Restrictive or repetitive Patterns of Behaviour

The measure of overlap; or how strong each of these criteria is presented by an individual, reflects where on the Autism spectrum a person is. However, you will unlikely be told where you are on the spectrum anymore as that's unfairly discriminating. A diagnosis nowadays is either yes or no with some explanation of which of the criteria was met.

Fundamentally, people with Autism think in different ways, this is neither negative or positive and it is not a condition that needs "fixing" but can lead to observable differences in behaviours.

What are my autistic traits?

No two autistic people are the same, though they may share come common characteristics.

I was measured against the DSM and passed all criteria. I was interviewed and my Mom too, separately and in parallel. Both of us were interviewed by trained professionals and then a diagnosis was given to me later once these professionals conferred with each other on the evidence they heard. This was the culmination of a lengthy process originally triggered by a referral by a GP, which in the UK is a mandatory first step for diagnosis.

My diagnosis was clear and obvious to them, but across my life I was rarely ever told by anyone they suspected I had autism. In fact, I am sure I would never have even been referred by my GP if I had visited as my traits are now so subtle and often missed so I'm glad for the online doctor who saw me instead.

I am happy I was never diagnosed earlier or in my youth. I think my life, my opportunities could have been so different. If anything I feel I may have been unconsciously "held back" or restricted by a label such as autism.

One thing that stood out in my diagnosis and susbsequent sessions was that I was told I have a really high EQ, which is unusual for autistic people. Ultimately I have been told this has become my defence mechanism in life from a small age to help me understand the world.

Many of my friends and family are surprised by the diagnosis ... at first. But in fact I think I have just been masking really well (without knowing it).

I have faced internal struggles all through life but a caring family, self-doggedness and determination to understand the world that I was always confused by, helped me to learn to overcome and work around my differences.

While I can't list everything I noticed or was observed, here are some crucial ones.

• Social Anxiety

Many of my colleagues would not say this is me. At worst, I am just an introvert, who prefers quiet. The truth is if you asked me to join a work social or to stay at home and watch TV, I'm in favour of the latter, always. However as the years have gone by, I've learnt to tolerate, if not accept the value of "socialising". I'm more comfortable now, at ease but ultimately not necessarily enjoying it, if anything more often doing it out of necessity. I think this is why sometimes autistic people are often mistakenly thought of as cold or lacking emotion.

The truth is different. The desire to be social just isn't there in the same way. I do have a sense of fun, I want to have fun with others but under my own terms and in ways that I enjoy. Ultimately, I more often get more satisfaction from work or something else because I am ultimately driven by the desire to "complete a task" and socialising just isn't a 'task' as my brain computes it.

In the same way, the conversations I understand and enjoy are those that have a purpose or fact based, "e.g. let me tell you my progress on task A, or did you hear about that thing on the news, what do you think?". I am driven to talk to people about tasks and facts, things that need completing or have sense, beyond those things I am lost.

As a direct consequence, smalltalk is the enemy. It confuses and disorients me as I can't fathom any logic or reason or most importantly I am unable to dance to the rhythm of small talk, to keep the flow going. This however has unwanted side effects in making me appear odd or cold and so I've overcome it by learning to apply small talk - simply by acting as someone else. This is masking. Masking however is a mental drain and so I often will need to retreat into my own space afterwards. For example, at the event where I sang, getting on stage was actually easy. I had a series of steps to perform and a tone/style to hit the audience with which I did successfully. However, mingling and interfacing with people 1:1 afterwards was really difficult and I think always will be.

I think finally, for the same reason this is why I (and other people with autism that I know) can't handle speaking on the phone. I can tolerate phoning someone to ask a question like "Hi, I need to update my address", but being unable to see the person makes the process of any phone call pretty bad. I survive conversations by interpreting 100 million clues in your face, your tone of voice, etc etc. A lot of that is lost over the phone and so I can't judge things really well anymore, are you joking, are you interested in what I'm saying, did you understand what I said ? This makes the process really stressful.

• Obsession to finish tasks

Autism is not OCD, but I do have a strong obsession rather to complete things and this might come across as OCD. For example, I had to prepare supper today. I opened the packet of one of the ingredients - I immediately have two compulsions. I know I need to cook this ingredient, but I am overcome by a stronger need - the wrapping needs to be put into the bin, in this case the recycle bin. If i don't do it I am constantly distracted by the knowledge the wrapper has not been put away and so I won't be able to focus on cooking the ingredient. So I take the item to the bin, but hey - the bin is on the way to the fridge and to cook my ingredient I need items from the fridge for the next stage of cooking. So after putting the wrapper in the bin I can't pass the fridge unless I get the items from the fridge, otherwise I realise I am creating unnecessary effort to go back to the fridge later. So, I am compelled to get them now and return back to the cooker.

So annoying right? But I can't help it.

The reality is how this affects more important topics. For example if I need to decorate my home, I will decorate it, and not stop until I am done, even if this means 3am finish. Likewise with important work tasks, I can't leave them undone and can often work till late at night to get them completed.

• Obsession with detail

This is a strong trait and one of the first things I learnt to overcome. I often answer questions in way too much detail. Why - because it's how I process information and so it's how I expect everyone else to need information too. Similarly, in most cases it's driven by a lack of understanding of what I'm being asked and so this leads to two things:

1. I start a flow of information, almost everything I know about a topic in an attempt, sort of like throwing all my ideas out there and if I'm lucky one of them will be the answer you wanted.
2. Unaware that I am drowning you with too much info, I mistake the silence or lack of response as a sign that now you don't understand - so I start adding more and more details and in fact begin repeating myself because clearly what you need is more detail to help you understand my point of view.

For example - ask me "How are you?" - I am not sure what you are asking, in fact it's one of the worst and confusing questions to be asked (!) Do you want to hear "I'm fine" or is that too basic, do you rather want to hear "at 9.05 I was having a wobble, but then I realised I was just hungry and so I went to the canteen" (micro pause - acknowledge you haven't said anything so I add more detail). "They didn't have oats so I had some eggs instead and that indeed solved the problem, but I think I over ate so since then I'm so full and feeling a bit groggy. So I'm ok now I think in answer to your question".

If you're lucky, I may even acknowledge the social cue and respond by asking you "How are you? But it's not natural and more often I will forget ..." You see - if you asked me "How am I?", it must be because you have spotted something is off with me, else why would you ask. ....

My answer has way too much info and ultimately I made two mistakes here. a) I couldn't read or interpret that "How are you?" was just smalltalk and not a comment on how I looked to you, i.e. not an actual factual based ask about my health and well being b) I surfaced my own insecurities that I don't really know how I feel at any moment in time, I'm either content or angry for the most part and I also don't understand why you want to know so this is really confusing, what am I missing?

• Written not verbal communication

As evidenced by this article I am a big fan of writing things down. I am more comfortable explaining something by email or over chat than actually talking to people. I notice in meetings my brain find it hard to follow what's being discussed but I can hyper focus on chat or email very easily while in the meeting. I am not sure why this is, this is the way.

• Strong sense of Justice

"C'mon slow coach". When you say that to someone, almost certainly it is with a mixture of humour, affection and comradery. Your semi mocking someone in a cheeky way but not if you say it to me (or atleast me from many years ago). To me, you are calling me a slow coach, and I couldn't understand the blurred lines between humour and fact. I lived in facts and truths and so to call me a slow coach when I was not .... well that was wrong and made me angry. In fact, this breaks my code of justice and would cause me to get angry.

As I grew up I got much better detecting this, but the sense of justice has always remains, and can lead to "meltdowns" if not left in check. Ultimately, as an autistic person I usually live in absolutes and so when I am accused incorrectly of something this is offensive in so many ways, unless someone rapidly follows up with "just a joke !" I can't explain this but it leads to strong reactions, often betrayed by micro facial gestures even if I can control my tongue. This is the way.

How do I feel now I know?

I feel a stronger sense of understanding of myself.

The response from everyone I know has been overwhelmingly positive and supportive. In recent years, Many, if not all the traits I discuss above are hardly visible, but I know they are there and I live with them, silently in most cases. Being told I have autism has just made it make that much more sense and given me the tools I need to handle things better.

For example, knowing that I am driven by an obsession to complete, makes me better at controlling my work life balance and accepting that not everything always needs to be completed asap.i.e. I don't have to stay awake till 3am to complete that report for work.

As with anything, admitting or acknowledging something is the first step. I avoided getting diagnosed for many years until it got too much. I am so glad I found out and it has certainly improved my mental health.

I don't intend now to be put in a box or restrict my actions to what autistic people do. However I do feel now a stronger freedom to accept my differences and embrace them and also great solace in meeting other autistic people who share some of my traits or at the very least understand it. To my knowledge it hasn't negatively affected my home or work life and I intend to keep it that way too.

At the end of my DSM assessment, the clinician said "In some ways the way you handled yourself in this interview gave me so much hope for the future of people who I know with autism". That was such a wonderfully sweet thing to say and so I want to use this new knowledge of myself to continue the growth mindset which has got me this far :) Knowing that most people I know never suspected any of my autistic traits and that I can seem like someone who is neurotypical rather than neurodivergent is a positive step and something I want to get better at. Being neurodiverse is a wonderful thing and something I am now proud of, but being able to understand both worlds gives me a great buzz and I believe makes me the manager my team enjoys working for.

Thank you for reading :)