I run Autistic Knowledge Development (AKD), an autism think tank led by professionals who are also autistic and multiply neurodivergent. I am one of those professionals. As a team we say, “we’re autistic at the weekends too!”. This gives a level of insight into what it is to live as neurodivergent people that you cannot gain from studying it alone.
AKD creates innovative new autistic-led and designed services, pilots and supports, including sector-leading services and resources for the biggest names in autism and health and social care in Scotland. All our services have action research embedded within them. Our 2024 white paper on adult autism support was endorsed by the National Autistic Society Scotland, Inspiring Scotland and the Scottish Government. The report recommendations are based on an external evaluation of our Embrace Autism service, in which we gave equal parity to those with and without a formal autism diagnosis. The biggest takeaway is that autistic support should be designed, delivered and, importantly, led by openly autistic professionals.
We now work with neurodivergent types wider than ‘just autism’, as people do not fit neatly into one box. Research on primary school age children and anecdotal observations in adults we support, suggests that being one form of neurodivergent type alone is unusual.
Whole of Society
Neurodiversity includes all of humanity, not just those of us who are neurodivergent.
Basic maths would suggest that due to the sheer volume of us neurodivergent people who exist, we are a natural population difference. The statistically significant volume of us suggests we were a positively selectable trait for much of humanity’s history. Recently, multiple pieces of research suggest that ADHD could well have been an evolutionary advantage.
For those who say autism is a new phenomenon, there have always been people deemed ‘eccentric’ by society’s status quo, maybe just the word autism wasn’t used back then.
Getting a formal recognition of being neurodivergent is increasingly difficult. Often, it’s a lottery on many different levels, a financial privilege, and carries stigma that appears to be increasing, not decreasing in many countries. I got a formal diagnosis of both autism and ADHD over a decade ago. I’m now 46.
I was born autistic and ADHD (AuDHD) in 1979. I was AuDHD throughout my entire education system journey, which I got through eventually with much difficulty, without knowing this. When I realised that I was most likely neurodivergent and when I was waiting to access a formal diagnosis, I was still AuDHD the whole time. Now I have a piece of paper that says I’m AuDHD. I’m still the same neurotype as I have always been since birth.
Whole System Approaches
As an organisation, and as individuals, we realise just how validating and life changing a formal diagnosis can be. However, in the zeitgeist of cuts, potential recessions, lack of funding and underinvestment in public healthcare, is increasing the requirement for a formal diagnosis really the most pragmatic and caring way to help all our communities right now?
As an organisation, where possible, we prefer whole system approaches for all. This supports and enables everyone, with or without a formal diagnosis, with or without the knowledge of their own neurodivergent mind, with or without the desire to get a diagnosis, with or without the stigma of having a diagnosis.
If you are left-handed, you don’t go to a doctor to get diagnosed, you just are. At school, if scissors are required for an activity, you get given a left-handed set. That’s it. Done. If a child is struggling in a conventional education setting, surely it should be that struggle that triggers support and any reasonable adjustments, not the need for a piece of paper that has a pathology that provides the struggle with a label and backstory? Should this not be the same for adults in the workplace too?
Shouldn’t we just help people?
Canaries in the Coalmines
If we can get a system, a place, a school, a workplace or an organisation to be a healthy environment for neurodivergent people, it becomes a healthy environment for all neurotypes. Over the next decade and as Gen Z climb organisational hierarchies, creating healthy workplaces will increasingly have ‘in-kind’ cash-equivalence to better paid, but toxic workplaces. Staff turnover is a huge financial issue for organisations.
By viewing support, systems and processes for neurodivergent people as being separate, or in addition to ‘the mainstream’, we do all of society a disservice.
One of the aims of integrated care and support is a sense of purpose and belonging within society for everyone. Our own work at AKD shows that these two elements are the keys for lasting positive wellbeing, with or without a formal autism diagnosis.
Sean Macaskill
Autistic Knowledge Development