
I spend significant time thinking about secrets and surprises and the positive and negative connections between people and organisations associated with sharing, holding, and withholding.
Not knowing and not having to say are significant aspects of relationships’ power dynamics.
Generally, in my experience, the imbalance of power never tips in the favour of an autistic person, even within organisational spaces that claim to be for us.
This will be a recurring theme on my blog as my art and professional practices centre around access, thresholds and the stories we tell ourselves. Stories that we embodied because we were told them so often but that are simply not true.
Many organisations supporting autistic people think that we need social stories – definition from the National Autistic Society website:
“Social stories and comic strip conversations can help autistic people develop greater social understanding and help them stay safe.”
This is not true, or at least, it is highly simplistic. Social stories serve to remove some of the secrets and surprises (yeah, it is nice not to be in the depths of ‘fight/flight mode’* all the time), but the premise is utterly wrong.
Social stories add weight to the burden of autistic people that the default for them is to feel uncomfortable and bad inside: “Here is a more detailed explanation of how to navigate our neuronormative space and culture and if that still feels really shit and awful to you, well, that’s on you”.
“…oh, and please keep that a secret; ultimately, we don’t want to know.”
Recently, I went to a workshop designed for neurodivergent people by neurotypicals – suffice to say the workshop wasn’t great – but that’s not exactly a surprise (to me and all the other autistic people there).
Some of us gathered to reflect (and frankly heal) after the event. For clarity, group profile: university level or equivalent education, low support needs, living/working independently, verbally articulate, ambitious, enjoy philosophical and sociological debate.
Initially, we said things like, “Don’t worry; I’m used to figuring out how to make things work for me; it’s not a problem.”
Until I shared the secret that we shouldn’t have to feel like that in spaces that claim to be designed for us. Then, the surprise kicked in.
If you’re a thinking autistic person who has been through the school system, you have a minimal level of understanding left that life should not feel awfully hard and isolating for you as default.
“I’m used to being uncomfortable in these spaces, but now I’m thinking more about the strategies I’ve individually had to develop to cope, accept, and compromise to ‘get on’ or ‘do what’s expected’ and the emotional, physical and monetary cost burden for me.”
A Collective is an organisation, and it is a process – a long, iterative healing process held as a community as we unlearn, experiment, grieve, reflect, build trust in ourselves and each other, and experiment again.
Unpacking all the secrets and surprises.
Anyone who’s reading this with raised eyebrows and perhaps thinking I’m overstating, a reminder that autistic people without co-occurring learning disability die by suicide nine times more than the average; for autistic women, that increases to 13 times. Less than 70% of autistic adults are in employment.
These statistics haven’t changed for a decade, during which time The National Autistic Society has had millions and millions of pounds worth of funding to “campaign” and “raise awareness” to zero effect.
So try not to pat yourself on the back too hard if your organisation does things like social stories but doesn’t open itself up to protectively-held conversation and co-production with autistic people on a regular and routine basis because you know what?
We don’t have all the answers either, yet.
How could we ever know what we need when we’ve learned that feeling awful is OK?
*fight, fright, flight, fawn, freeze, flop – what’s your go-to?