Canaries down the coalmine

 What comes to mind when you think about neurodivergent people?

Some of the current stories are about our 'superpowers'. Others are about the things we struggle to do that neurotypical people can do with ease. There are stories about us transforming board rooms and working strategically. There are stories about our serious over-representation in the criminal justice system. There are stories of parents seeking 'cures' for us. There are desperately sad stories of us taking our own lives. 

And, do you know what?

These are stories that can be told within any neurotype, within any culture. The stories are not unique to neurodivergent people.

Even in Wales, where I live as an *AuDHDer and **autrepreneur, my experiences are of the same kind as everyone else in Wales. Where my experiences differ is in their intensity.

What I mean is, I get sensory overload going into a supermarket. The lights, the noise, the people moving unpredictably, the colours, the smells. Everyone is capable of getting sensory overload. Put anyone in a psychodelic intense sensory experience and crank up the volume and at some point it will get too much. 

The level that incapacitates me could merely reduce your wellbeing and efficiency slightly. 

I am the canary down the coalmine. I am your early warning signal that an environment is unhealthy for all. The whiff of carbon monoxide may not harm you but it reduces your effectiveness and wellbeing. You won't even notice unless you have a canary with you who falls off its perch. 

[as an aside, did you know that birds down coalmines had tiny oxygen masks to resuscitate them? You can even see one in the Science and Industry Museum. I so wish public spaces had 'neurodivergent resuscitors' for us to recover when exposed to sensory overload. One day...]

My point is that neurodivergent people do not need 'special design' for our 'special needs'. We are the canaries down the coalmine. You need what we need; you just don't get affected as badly as us. 

Neurodivergent design is neuroinclusive design, the foundation of universal design. If it works for the canaries, it works for the miners. Design an environment that keeps canaries on their perch and everyone will be healthier and more productive. 

*someone who is both autistic and ADHD

** an autistic entrepreneur

Meet The Duck and the Living Lab

*Don't worry, this isn't a blog about vivisection*

I'm not sure if there's an official definition of a Living Lab but I'm very sure there isn't for a Meet The Duck day - at least not until today - because it's a new thing.

First, say hi to Ed, the Executive Duck.

The computer world has the concept of 'rubber duck debugging' and the ADHD world has the concept of 'body doubling'. Ed is the product of my curiousity: what happens if, instead of talking though a problem, you tell a rubber duck what you are supposed to be doing then sit the rubber duck in your line of sight as you work. 

It is working for me. In fact, it is working so well that when I want a bit of downtime and I haven't finished my list of tasks, I have to hide Ed. 

I'm working on an auditory equivalent as not everyone relies on visual cues as strongly as me, to see whether putting on a specific playlist can provide a 'body double'. A wonderful entrepreneur friend tried it last week on her admin day and achieved more with less stress by using a gentle audio cue.

Which gets us to the concept of a Living Lab.

A small group of us are using our curiosity, knowledge and personal experience to develop and iterate ideas faster than any formal research programme. It's what I call #RealTimeResearch. What turns this into a Living Lab is that we are in the process of starting a membership organisation called NeuDICE, the Neurodivergent and Inclusive Community of Entrepreneurs, thanks to the support of UnLtd and Social Firms Wales through the Welsh Gov funded Ecwiti award scheme.

NeuDICE will be a Living Lab where we ideate, iterate and implement - or, in English, a place where we come up with ideas, try them out on ourselves in real-time, and when we find something that seems good-enough to release into the wider world - well, off it goes!

It's early days as yet. We are still working on ways to capture the learning as we go. In the medium term, we aim to set up INDIE, the Institute for Neurodivergent and Inclusive Entrepreneurship. INDIE will take on the evidence, evaluation and research function leaving NeuDICE free to crack on being curious and trying things out. In the immediate future, we are just using Miro boards to document thinking and findings as we go along.

Remember Ed, the Executive Duck? 

On Wednesday 24th August and Friday 2nd September we are trying out Meet The Duck days in Swansea. The concept is that people book themselves into the same co-working space and bring their rubber duck. By 'people' I mean those freelancers and microbusiness owners who are already on board with the concept of a space designed for neurodivergent entrepreneurs and open to all and are just waiting to sign up for membership to NeuDICE. 

Those days we will be testing:

• does productivity increase when we meet in a shared space, all knowing that we are there to crack on with jobs we've been postponing?
• does the visual of sitting rubber ducks on our desks help build a sense of belonging to a community?
• are the provisional rules* working in the way we think they will?

*provisional rules:

• No speaking to anyone when they are sat at their desk. Comms will be via a virtual 'mirror' co-working space in the NeuDICE Discord server. This includes when you walk into the space. The only exception is that you can approach Zed when you arrive if you aren't sure about anything (Zed is the executive duck wearing dark shades - Zed belongs to the person who arranged the Meet The Duck day). If you just want to say hi to people when you arrive - that's what the Discord server is for.
• If you would like company when you take a break, drop a message into the virtual space, say how long you think you'll be on your break and be upfront if there's anything you'd like to pick people's brains about or enthuse about while on your break. 
• No moving into anyone's personal space. For us, that means staying at least two arms-lengths from anyone else's body.
• Conversational menus are welcomed [This is a credit-card sized list of topics you'd enjoy talking about if you find yourself taking a break the same time as someone else] It saves the anxious pressure of small talk. 
• Stimming is welcomed. Negotiating a way for everyone to be comfortable in the space if one person's stimming causes another person's sensory overload is also welcomed. If it's easier, this can be broached via Zed.
• Wearing noise-cancelling headphones is highly recommended because a) it's hard to work in total silence b) each person has their own optimal kind of sounds when working and c) people will be making and taking calls at their desk.
• Treat the space as an enclosed public space. So follow the noise-pollution, eating and behaviour rules you'd follow if you were sat on a bus or in a waiting room with strangers. 

If you live in or near Swansea and you want to take part in the Meet The Duck days, you can leave a comment here, message @welshflier on twitter or connect with Anne Collis on LinkedIn. 

Categorising, drawing, and an autism diagnosis

 My first degree was botany, back in the 1980s. We learned classification. Most of the time, we looked for particular features to say 'is this'; sometimes we looked for absence of features to say 'not this'. 

Fast forward to my first art class since school, a one-off taster to celebrate the new millenium. I learned you can draw by looking what is inside the lines; but it can be more effective to get the shape by looking at what is outside the lines.

I am autistic. I know that because I looked for the features that say 'is this'. To be autistic is to possess a variety of features, traits, ways of seeing the world that are sufficiently distinctive to allow classification as 'autistic'. 

I have autism. I know that because the NHS looked for features that say 'not this'. The clinical diagnositc process starts with a presumption of what 'normal' means and then looks for features and traits that are considered 'not normal'. My diagnostic process was for autism, so the process looked for ways that autistic people are typically 'not normal'. If it had been the diagnostic process for ADHD, the process would have looked for other ways in which I was typically 'not normal'. [I opted not to repeat the diagnostic process with a different team with a different ethos, given all that is on offer locally for adults with ADHD that isn't available from the autism service for those with AuDHD = both autistic and ADHDer - is medication]

I find this difference between being autistic and having autism is easiest to understand through the lens of neurodiversity. 

When I say I am autistic, I am saying that variation in ways of perceiving, making sense of and interacting within the world is naturally occuring. I am an orange in the fruitbowl of life where variation in types of fruit is naturally occuring. 

When I am told I have autism, they are saying that there is a normal (neurotypical) and that's not me.  I am neurodivergent. I do not fit their model of normal. I am an orange in a fruitbowl where apples are the only permitted fruit. 

One day, when societies recognise the naturally occuring variety of neurotypes, to say someone is neurodivergent will be meaningless because there will be no neurotypical and therefore no divergence from the typical. 

In the meantime, I am proudly neurodivergent. I believe society needs people who see social issues from multiple perspectives and can co-create solutions. This means society needs a diversity of people with the full diversity of neurotypes working together on these social issues. In some places, this is called thought-diversity (as opposed to group-think) or having different cognitive maps (as opposed to sharing a team cognitive map). 

The bottom line is that if society keeps thinking using a limited set of perspectives, society will keep getting the same old results. Problems that have defied solution will continue to defy solution. 

Perhaps the first step towards this future would be switching to a 'is this' form of classification that values each person for who they are, rather than a 'not this' that defines people by what they are not. 

Who knew that a 1980s botany course, drawing on 17th century botanical principles, could be so relevant to policy design in 2022?

The Armstrong et al Collection

How many students have been fortunate enough to have someone with learning disabilities as one of their PhD supervisors? Alan Armstrong was one of mine, thanks to the KESS partnership between Bangor University and Barod CIC. I am extremely grateful to him for his input with designing and providing feedback on my research.

It was a huge personal loss and a loss to the academic world when Alan died in February 2021, just short of his 50^th birthday. One of his ambitions had been to create a space where self-advocate researchers could network and begin to design their own research proposals. He is no longer here to do it. A number of us who loved and valued Alan have worked together on the first step towards creating such a space: a website where self-advocate researchers can have their own research profiles.

Today I graduate. Alan is not here to celebrate with me. Instead, it seems a fitting time to celebrate his own academic contributions with the launch of The Armstrong et al Collection.  armstrong collection - The Armstrong Collection 

Once upon a time

 Once upon a time I thought I would leave school, go to a good university, choose a career and either stay in one job working my way up the ladder or move between companies as I climbed the ladder. After all, that’s what the school careers service told me everyone from that school did.

School was structured. Home life was even more structured with constant after school activities. I knew I didn’t have friends. I knew I got bullied for being different. I knew I couldn’t work out what I was doing wrong. But I knew how to succeed in lessons, learning and structured clubs. I won drama prizes, school prizes, music awards. I got a place at Oxford.

And then it fell apart.

No structured social interaction, largely self-directed learning. Cue mental health difficulties and under-performance.

I scraped a lower second. I watched others ace career interviews while I floundered.

I am now 57. My life has had impact. But I have never achieved in the sense that others achieve and I was expected to achieve. I have not had a solid career. However much I can explain that in terms of parenting and health – well, those are the socially acceptable explanations rather than my truth. My truth is I have never felt I fit in, never felt adequate, never understood how to play the games needed to build a career.

Age 57, I had an autism diagnosis. How different life might have been if that had been known when I was 17. I have an inkling of how different life might have been as I watch my daughter benefit from a self-understanding I never had, a phased transition from the structure of school to the free-fall of university, and a love for herself as she is.

It is too late for me to benefit from current awareness of neurodivergence and changes in the workplace. There is still time for me to support the daughters of today so they can benefit from self-understanding and awareness that the workplace is not the only option. For many, like me, entrepreneurship or being their own boss will be the way forward. Through the work of PinkGold Ltd, I look forward to opening doors and helping them on their way.

Big news

Autistic young people and adults can access tailored support for employment, but many of us are better suited to self-employment (being our own boss) or entrepreneurship (creative solutions to gaps or problems we see around us). Sadly, tailored support for this has been sadly lacking.

I am in the process of working with others on three inter-connected organisations designed to provide at least some of that support. They all come under the banner of NeuDICE – NeuroDivergent and Inclusive Community of Entrepreneurs.

All three are underpinned by PinkGold Ltd, my personal business - the one that puts food on my table as I work voluntarily with other volunteers to get NeuDICE established.

·        INDIE (Institute for NeuroDivergent and Inclusive Entrepreneurship) will drive the knowledge creation and spreading of knowledge about ‘what works’.

·        NeuDICE-community will provide an international virtual community for us along with local networks.

·        NeuDICE-services will deal with some of the infrastructure challenges such as:

ð  lack of suitable co-working spaces (trying starting a business at the kitchen table if you have ADHD or in a co-working space if you get sensory overload!)

ð  business support and professional services designed only for neurotypical minds

ð  the unrecognised need for exec assistants (people who are part PA, part executive function support, part life-coach).

If you might want to be part of this, drop me an email at info@neudice.org

Avoiding hyperfocus burnout

When I was young, I used to rejoice in being able to get my head down and cut through a week's worth of work in a day. I also used to wonder why I worked erratically and regularly burned out. 

Since hanging out with more neurodivergent people, I've learned a name for what I did: hyperfocus. When I got in the flow, it was as if nothing existed beyond the work - not even my body. In time, this took its toll. 

Last week, I was talking with someone who feels like a younger version of myself. She already knows the cycle of hyperfocus/burnout all too well. And yet. The buzz of hyperfocus - and the speed at which tasks vanish from the To Do list - is addictive.

In talking with her, I realised I've learned my own rule of thumb for sustainable work. It's a one-in-three rule. If I spend half a day in hyperfocus, I need two half-days of brain-rest. That doesn't have to mean doing nothing. It can mean doing some mundane jobs in a non-intense way. 

If I spend a week locked in my study, then I need to factor two weeks of rest. I will have achieved as much in that week as most people achieve in three weeks so I shouldn't feel guilty from a productivity perspective. 

Hyperfocus is a one of those double-edged swords for neurodivergent overachievers. It is a superpower where others stand in awe of what we accomplish. It is kryptonite if we don't balance our hyperfocus with the ability to breathe, rest, relax, and work at a slow pace. 

Learning that balance comes with accepting who we are. If we cannot accept that we are perfectly good 'oranges', it is harder to give up the thrill of hyperfocus at work. 

We all need to find our own rule of thumb. when I was young, maybe 1:1 would have worked. Now, I can't do more than 1:2. As I age, perhaps it will change again. or perhaps it will stay as 1:2 but measured in hours not days. Who knows? What I do know is that finding that workable rule is key to staying healthy.