I am 8

by Dan Neill, AXA Health

The 9th of September is a particularly special day for me. I look at it as a second birthday for me. 8 years ago, a couple of months of angst on worry came to end when a letter landed on my doormat to officially confirm that I was autistic. One set of concerns came to an end and something new started.

By the point I’d gone through all the screening questions and waited for an assessment; a good few hours of talking about how I react and handle situations, my childhood and growing up, even some stuff that I happened to know about how my mum’s pregnancy went with me (I’m here because my mum refused to follow Drs advice and terminate me as I wasn’t growing big enough, newsflash my dad is 5’4 and my mum was 5’ I was obviously destined to be a giant), that I was more concerned that I would be told I wasn’t autistic than being told I wasn’t. If the answer was yes, that would give the explanation and justification to the years of thinking I was different, if it was no……then I was just weird. I’ve always known I did not think like most people, I could see and hear things other didn’t, and being sociable is a bit of a mystery and to be honest it still is, but I’ve become quite a good actor over the years, and it is all an act. All this coming after dragging myself out of the black pit of depression I sat at the bottom of for the best part of a couple of years (in this instance it’s something I’ve lived with since I was 12). It really felt like a rebirth or maybe hatching out of a cocoon disguised as a human into me, the real me, Dan the autistic.

People ask why do you label yourself or define yourself by it? This is one of the places where people need to challenge how they view us. There never was and never will be a version of me that is not autistic, so it’s an intrinsic part of who I am as a person, like my race. It can’t be cured because it isn’t a disease, it’s a different neurology, there are numerous scans of neurotypical (“normal”) brains vs Autistic ones, the number of neural pathways are physically different to the number of pathways present in a “typical” person, when we see or hear something it’s significantly higher (up to 10 times as many) in short, we use more of our brains to process sensory information. When you are inundated with masses of information from multiple sources in one go, you can literally get overloaded. Would I swap that for the ability to be more social? Off the bat I’d say no, yes social situations are hard work and they do require time to recover as it’s so mentally demanding to navigate. I’m never going to be an expert, but I can do enough to exist. But lose how I see and hear the world? Never! It would be like blinding me and shoving cotton wool in my ears and lose the things that are my biggest strengths, I’m completely comfortable with that.

After a lot of encouragement to share it I wrote my first blog 8 years ago. By shear accident of clicking the wrong mailing list on Outlook our then chair of ABLE, rather that share it with the ABLE community, sent it to every single one of the 8500 staff members in the UK Group. After about 10 minutes my Outlook went mad. I was getting emails from all over the group telling me how much they enjoyed it and how much they’d learnt from it, A director arrived at my desk to tell me how much she enjoyed it. It wasn’t all positive the picture on it was the one on my card key pass which then was probably at least 15 years old. I walk past a couple of women discussing it outside the office (who I hope didn’t recognise me) about “why would anyone want to admit that?” I didn’t care, I discovered A, I could write, I was a hyperlexic child which meant I read way above my age, but never really got my head round structured writing (it probably has more to do with told what I had to read, and what I had to say about it). B, Writing is a cathartic process and emptying my head onto paper (yes, I still write most thing out longhand first) is enjoyable.

Wind on a couple of years and I had learned to enough about myself to talk about how and where I was different. Another misconception is that when you get your diagnosis you suddenly have all the answers, like it’s a video game “CONGRATULATIONS! You have unlocked the skill AUTISTIC you can now use all abilities related to this skill” I’d love it if it was, it would be a lot simpler. But you then must try to work out how and where you are different, especially when it comes to sensual perception. To give you an idea here’s a thought experiment. You and a friend both look at a ball. Here’s the fun part. You both agree it is blue, but how do you know that the colour your friend sees as blue isn’t the colour you see as red. You have no way of knowing what either perceives even though you agree. When you have no frame of reference, how do you know what you perceive is different from what others do, that’s what being undiagnosed is like. I had never considered that I was hypersensitive to sound because it’s not something that would come up generally and I have no frame of reference to judge against. It’s only after you discover you are different that you start to think about and analyse it and it takes time.  I came across a good example to give an idea. You’re in a teams meeting and someone is in the office and their mike picks up the background conversation and it’s as loud, if not louder than their voice, now imagine that’s everyone in your meeting. Now imagine that’s everyone, everything ,  everywhere, wherever you go, all day, every day and you don’t have the option of mute. That’s the closest you’ll get to appreciating what sound sensitivity is like. There’s more to it but it’s not a bad analogy.          

One of the things starting a conversation does is create is questions. People are too afraid of asking a question for fear of getting it wrong of offending someone. Ask away you’ll get an answer. Trust me we’re used to asking the wrong question or getting it wrong much more than normal people are. What you can control is whether you listen or act on those answers.

Come forward to today and I’m the  workstream leader for our Able neurodiversity workstream. I’ve a panelist for D&I conferences and I’ve been asked to speak at Big financial instistuions  who are way behind us in anything related to neurodiversity and to be honest most companies are when you look beyond the smoke and mirrors of what are inevitably only ever “pilot” schemes. Things really have moved on, they’re nowhere where they need to be, not yet and that’s not anyone’s fault it just needs time and more people being open. I have friends and colleagues here who are still not comfortable enough to be completely open that they are neurodivergent, but more are, as we gradually build that community, we can normalise being different.

One of the things I’m proud of is that we are a company whose work on neurodiversity is heavily influenced by a group led by and consisting of neurodivergents. It would be easy to say we need to do more but looking back on the last 8 years we’ve come a long way.  There are more of us, and our numbers are growing. We have a voice and it’s listened to (in the majority) and acted on; you can’t really ask for more than that!

There’s more to come and I’m confident we will make a difference; I genuinely believe we have the people and the attitude to do it.

Be nice to each other

Dan😊