Small changes can make a huge difference in supporting neurominorities to feel included and able to participate in meetings, says a McPin Lived Experience Researcher.
The upside of Covid for me has been having my own little corner of the world from which to work. I don’t have an office overlooking the city but I have quiet. I have familiarity. I can set the pace to my routine. I have pyjamas on and it is OK. I can be spacious without feeling afraid.
I recently went to my first ‘in person’ meeting in over a year and a half and, in spite of very much looking forward to it, I buckled and spent two hours glued to a chair with a frog in my throat. My voice was still in lockdown. I felt frustrated and ashamed.
After the meeting I did some deep reflection and realised how far back these feelings actually went.
Points for participating
From a young age, we are conditioned to think having a strong external voice is a good thing. You get ‘points’, literally, for participating in discussion, from the classroom to the seminar room at university.
Presenting is a norm of many office-based jobs, such as meetings where decisions are made and verbal contributions confer a sense of ‘in group’ worth. Job interviews are a prime example.
When you don’t have a competent external voice, assumptions and assertions can be made. ‘Ah, they’re shy’, ‘Cat got your tongue?’, ‘You need to contribute more to the discussion’, ‘You won’t further your career if you can’t speak up’, ‘What’s wrong with you?’. These are all things I have had said to me.
All of this resulted in so much anxiety that it got to the stage where I just wouldn’t show up when I was required to ‘perform’, which led to a host of other assumptions: ‘Didn’t show up? They couldn’t be bothered…’.
You could argue having a ‘verbal voice’ is a form of social privilege. For people who find it difficult to talk in the kinds of situations I mention above, the lack of a voice can create major barriers.
My senses are unashamed extroverts. They party all the time. With smells, temperatures, sounds, even emotional tones. A clumsy symphony that prevents me from being able to zone into the conversational dynamics of a room.
I have a voice
After many years of growing and learning, I now have the confidence to say: I have a voice. It is bursting with ideas but it needs time, like fine wine, to breathe.
Part of this is because I am a neurodivergent*. Because of this, I can find verbal communication difficult, but this may not be obvious when you meet me. A lot happens under the radar.
My senses are unashamed extroverts. They party all the time. With smells, temperatures, sounds, even emotional tones. A clumsy symphony that prevents me from being able to zone into the conversational dynamics of a room.
Social cues for joining in can also be difficult to read. When are you supposed to speak? It’s like trying to find that silence when a wave peaks – just before it folds over on itself and crashes. I get the crash but never manage to grab the silence!
Peeling away layers of shame
My processing of people’s words in groups can be slow and methodical. Like a cow’s gut it feels like I have four stomachs for processing conversations. I may not digest it until later but I also have no choice but to digest them. I can remember lots of detail even if I don’t want to or need to!
All this can leave me overwhelmed to the point of deep anxiety. When this happens I tend to cocoon my mind and tongue, and sometimes body (by not turning up), so I can feel safe.
I have recently had some coaching to help me navigate all this, quite late in life. First I needed to understand what the challenges were. Then I needed to peel away the layers of shame piled on top of them so I could access a new language for talking about my difficulties, which were located both outside and inside me.
First comes awareness and then change. Below are some neuro ‘hacks’ I have been experimenting with, through coaching, to make in-person meetings feel more manageable and inclusive.
Including common ‘biases’ in the ground rules can also be reassuring. For example, should there be an expectation to talk? Can people participate in nonverbal ways?
Neuro ‘hacks’ for meetings
- When ground rules and agendas are visible in the meeting room it really helps. Large font, visible colours – maybe even sticking them to the walls. Visual cues can help a wandering, overwhelmed mind find an anchor back to the point.
- Including common ‘biases’ in the ground rules can also be reassuring. For example, should there be an expectation to talk? Can people participate in nonverbal ways? Online meetings are great for this as you can use the chat and raise hand functions so you don’t spend half the meeting trying to find that silence before the wave breaks!
- I sometimes ask for documents, questions and contribution expectations to be sent in advance by the meeting convenor. This helps me prepare and circumnavigate communication and social expectations which I don’t intuitively understand, in turn quashing feelings of failure.
- Likewise, when I set up meetings I aim to send detailed agendas, including the number of attendees and length of break-out sessions etc., so individuals feel more comfortable with the unfamiliar. It may sound like overkill, but I find knowing these things helps prep my senses. You could call it sensory management.
- Making reasonable adjustments explicit and available to all can help normalise differences during meetings. Ear plugs or noise cancelling headphones, and sunglasses and loose, comfortable clothing can minimise sensory stimulation during meetings.
- I also find dimming artificial lighting to maximise natural light improves my concentration, but this needs group agreement of course!
- When I am really trying to listen, I tend not to make eye contact and I stim. Stimming is shorthand for self-stimulation. We all do it – things like tapping feet or twiddling thumbs. It can be more pronounced for autistic people in certain situations. When I was little, I used to chew on things and could quite literally chew through the contents of my own pencil case in half a term, biros included. Stimming helps when I am stressed and want to regulate. Over time I have learnt healthier forms of stimming, like doodling or rubbing a stone in my pocket. Now there are lots of fidget toys and tools available too. Again, remote communication in work situations helps. No one can see waist down and my bottom half can stim away without raising eyebrows and there is the opportunity to turn the cameras off in some meetings. You could always request this option with a meeting organiser beforehand if it helps.
- Finally acceptance – forget all the conditioning, you don’t have to explain your silence to anyone (still working on this one)!
Being autistic is not set in stone
For me, being autistic is not set in stone. Yes, I am wired differently and there may be genetic components I cannot alter – but I am also learning I don’t want to. I am learning to appreciate the way I relate to the world.
Over the years, I have adapted to fit in and evolved new ways to cope in a world that I don’t always understand. I hope we all have the capacity to do this within a lifetime.
I also have autistic privilege. For one, I can independently write this blog to communicate my thoughts. This is not possible for all autistic people. Autistic experience is as vast as the human experience.
I can but speak from my own experiences and hope that by doing so, others may reflect on what they can do for themselves and others, to find that ‘meeting’ voice.
A note on terminology, because language is important.
*Neurodiversity, coined by Judy Singer, describes the infinite variation of human minds and embodied experiences that exist on this planet. It describes the ‘collective’ of humaneness and not the individuality of it. Therefore, for an individual to say ‘I am neurodiverse’ is like a tree declaring ‘I am forest’.
Neurodiversity should, therefore, not be used as a tool to divide peoples into ‘us and them’ – it is simply everyone! It is also not a scientific term or a medical diagnosis. It is fundamentally a political term.
Within this social and political space, a movement championing the common interests of neurological minorities (*neurominorities) has been growing.
Neurominorities advocate for their strengths and needs to be recognised and valued, not just the medical diagnosis and psychological treatments applied to them (often defined by the deficits and termed as disorders and syndromes), and to shift the balance from marginalisation to inclusion in society.
