SPACE – a framework for wellbeing for all
Today we’re joined by Lucy Gilbert, Lived Experience Lead at NdC, for the eighth blog of our latest campaign ‘Against PBS & ABA’.
Lucy explains how Neurodivergent–affirming approaches can bring benefits to everyone: Neurdivergent and neurotypical patients, carers and staff alike.
At the end of a recent Culture of Care event, that was focused on the equity principle of Autism-informed care, a Director of Nursing shared their reflections on the day, that her takeaway was that we are all human, and we need to strive to deliver human care and connection. I barely contained a joyful jig!
Autism-informed care and approaches work for everyone: they simply reduce the barriers faced by Autistic folk even more. Working in an Autism-informed way is not going to harm anyone and it can benefit everyone. And by everyone, I mean everyone: patients, carers and staff alike. After all, who wouldn’t value being cared for or working in a quiet, consistent, calm environment?!
Many staff working within health settings may also be Neurodivergent, and face many of the same sensory or social challenges which they are often also simultaneously supporting patients to navigate. That brings with it a wonderful sense of human connection and shared understanding, but with the extra load of potentially having to advocate for yourself and those you are supporting.
Alongside the difficulties we are all aware of around diagnosis and access to diagnosis, many of the challenges Autistic folk encounter may also be experienced by those struggling with mental distress and illness. For example, executive functioning challenges may be faced by many. There is likely to be lots of people on the ward who may need extra support due to fluctuating challenges with memory, concentration, emotional regulation and task initiation for instance. An Autism-informed approach helps.
Below I’ll share some of the discussions and ideas I’ve heard shared recently, to hopefully prompt a shift towards working in an Autism-informed way for everyone, not just those with a formal diagnosis. Because if we adopt this approach across everyone and everything, we avoid drawing attention to differences, we avoid feeling like Autism-informed care is an additional ask and help prevent any sense or evidence of ‘othering’. If we work in a Neurodivergent-affirming way for everyone, we limit the divide of ‘us’ and ‘them’ or neurodivergent and neurotypical.
Sensory
This is often considered the ‘easier’ aspect to think about and make changes to support. I think because maybe we can all identify with periods of being sensitive to sensory input during periods of stress or from being in really sensory heightened environments. A hospital with silent alarms for instance will help patients who are there to support recovery, but also staff who are there to work. Just as it’s hard to recover with interrupted sleep and piercing noise, it’s hard to concentrate on writing or tasks with that noise. Bright lights, strong smells can contribute to dysregulation, but can anyone work optimumly in harsh sensory environments? Or if staff suffer with migraines or physical health issues- are these supported or aggravated through the environment?
Predictability
We all like to know what’s coming next. So many of us rely on our outlook calendars at work, the calendar on the fridge at home to keep track of activities and commitments. How many staff will park in the same area of a car park, walk the same way in, follow the same routine as they get to work. I bet most people feel a sense of discombobulation if that routine arrival to work is disrupted – if you can’t check your calendar ahead of the working week starting. How can we support each other to know what’s coming? Agendas in advance of meetings, introductions at the start of meetings, clarifying expectations and deadlines.
Acceptance
This is the aspect of the SPACE Framework (Doherty, McCowan & Shaw, 2023) I find folk often struggle thinking about: how to support this need? I wonder if it’s because a lot of acceptance comes with how we are, not what we do. Being, not doing. How can we accept everyone to show up as they are and embrace individual differences, regardless of neurotype. For example, a lot of us stim – how can we move to people feeling it’s acceptable to doodle or colour during meetings, or fidget with pens etc during meetings if it helps their concentration? How can we normalise movement breaks during long online or in-person meetings. How do we collectively pay attention to our language use to ensure we model inclusivity?
Communication
How can we communicate with each other in a way that works for us all? Even small cultural changes can have a huge impact, like encouraging each other to ask what someone’s preferred communication method is. The Neurodiverse Connection team have recently introduced me to WhatsApp voice notes as an alternative to email or calls. Game changer for many! Before working in Neurodivergent spaces, I didn’t realise the value of the chat function on teams – can we encourage use of this and make an effort to normalise it? How can we make a conscious effort to check in on preferences which are not always obvious?
Empathy
How do we hold empathy for each other? If someone is having a bad day and makes a mistake or snaps, how can we approach that with compassion, rather than blame? Is our response to colleagues perhaps snapping at us, the same as for patients or people we don’t know as well? Do we place as much emphasis on gratitude to those we work with, as well as task focus? How can staff support each other to remain regulated in order to co-regulate with those in need?
Adopting an Autism-informed approach, such as the one detailed in our new interactive toolkit, ‘A practical approach to neurodiversity-affirming care and support’ inspired by the SPACE Framework (Doherty, McCowan & Shaw, 2023), can start to shift ‘the way we do things’ in a way that allows everyone to feel seen, respected and included.
I invite you to use the toolkit to open up to the possibility of a shift. Not everyone is Neurodivergent, but we are all human and working in this Neurodivergent-affirming way allows us to lead with kindness and compassion for everyone, regardless of diagnosis or label. We all deserve that.
References
Doherty, M., McCowan, S., & Shaw, S. C. K. (2023). Autistic SPACE: A novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital Medicine, 84(4). https://doi.org/10.12968/hmed.2023.0006
Want to learn more?
We’ve created a free interactive toolkit that supports a neurodiversity-affirming approach to care planning for Autistic individuals across health, education and social care.
The foundation of this toolkit is the Autistic SPACE Framework – a person-centred care approach developed by Dr Mary Doherty, Dr Sue McCowan and Dr Sebastian CK Shaw (2023) – which we build on by integrating a stronger emphasis on emotional safety, sensory support, relational trust, embodied understanding and human rights.
We believe that compassionate, relational and context-aware approaches are a more ethical and effective alternative to behaviourist models that prioritise compliance over wellbeing.
