Journeys are never a smooth ride but not knowing you are going over bumps in the road can help, until you crash. Excuse the colourful language, while I muster strength to talk about mine.
Back to the beginning
Back in my day, all the way back in the 1980’s, autism wasn’t a thing. You were simply labelled as difficult and told off. Luckily I was one of the first in North Germany, where I was born and raised, to get tested for a related issue: Attention Deficit and Hyperactivity Disorder - or as it became popularised: ADHD. While it was nice to have a new label nobody really had, it didn’t actually result in any support or acceptance.
Something that appears to be quite common for people with autism is to also have ADHD, possibly because the traits can often overlap. While we now live in a hyper-connected world that until recently was happy to accept neurodiverse people as part of their society, things are starting to take a turn for the worse.
Together with the lack of general support for mental health, young people affected by autism and ADHD traits also have to shout to get heard over the noise of dis/mis-information and bullying. Sometimes literally, often confined to their own minds resulting in worsening mental health.
Bullies
Bullying back then was certainly a thing and I experienced my fair share of it. My coping mechanism was to be friendly with as many people as possible and tuning in to their wavelengths or adjusting to meet their needs. Which is draining and often marred by misunderstandings but it is a skill I learned to develop and hone. I later learned that the word people found for it is: masking.
Survival skills
Masking is a vital skill for an autistic person to engage in any type of social interaction and drawing people’s attention to it usually goes one of two ways in my experience:
- People think you are putting on a mask and pretending to be somebody you are not, or;
- They chuckle and note that everybody does.
Neither are true and I find it challenging to explain, especially with acquaintances that mean well but could improve their listening skills.
Which is another hard-fought skill: empathy. Or becoming emotionally intelligent. In simpler terms, to find a way to relate to others, putting yourself in their shoes and noticing how they might feel.
TL;DR: I don’t mean things literally unless stated specifically. If you are struggling with the analogies and neuro-typical language, please bear with me. I am trying to speak to both neuro-typical and neuro-diverse readers.
This empathy lark feels difficult and I know from my non-autistic friends they struggle with it too sometimes. The best way I can get across how it works in my mind is to liken it to a character actor really getting into a character. As I have the benefit of a very visual mind and vivid imagination, I imagine myself as the person I am relating to. Often I go too far and my trait of over-analysing and over-thinking kick-in. Luckily, I have some medicine that keeps that from happening.
Super Power?
Another trait is becoming overly obsessive about topics that I find interesting, like digital technology for example. Some people call this typical autistic trait a “Super Power”, a term I wholeheartedly do not agree with. In the best case, it can be somewhat useful, in the worst downright disabling.
I find my self coming across new things to get obsessive about and have a hard time focussing on something I was actually meant to be doing. A situation that people might see as procrastinating. To me, it is akin to a force of magnetism. Something that may stop me from going to bed, eating or getting up.
Hence my career has mostly been as a consultant, moving from media design to information technology after starting my first office collective with other creatives. Nobody knew or wanted to know what the heck token-ring networks were or how to get the colour printer to spew out the design they created on their computers.
You know who was first to say: “‘Hey, that sounds like fun. Let’s find out.”? That’s right - me. And so I ended up on a 25+ year trajectory to helping people with technology in various guises. Mostly avoiding getting stuck in offices and seeking out social connections on my terms.
Back to the future
Which neatly leads me to where I am today. My desire to do something new and exciting with technology everyday while engaging in adding meaningful value larger than the sum of my parts: The Digital Repair Café in Milton Keynes.
My journey didn’t have internet until the mid-90s, let alone social media or laptops powerful enough to summarise the combined human knowledge from Wikipedia. Our kids do though and I see a lot of them struggle with the same things I found challenging. I also see their eyes light up when they engage with topics that I found exciting.
So, I decided to focus on combining various obsessions and start giving back to the next members of a community that gave me a lot.
Join the Crowdfunder
Join me in starting this project and making it a place of positivity and countering the culture of despair 😊 Join the Crowdfunder