I’m always telling myself, my family and clients that noticing is the first step in change. If we don’t notice something then we don’t have an opportunity to change it, so when my clients get frustrated that they’re not making the changes they want, I often remind them that there was a time when they didn’t even notice the thing they are working on or recognise that it could be different.
However, noticing isn’t as straightforward as we might think, often before we can notice something, we have to know about it. It’s why knowledge is one of the three threads at the core of the work I do.
Knowledge
When I am working with clients who are exploring their neurodivergent identities this is often our starting point, and this thread has its own separate strands that all need attending to. I’d like to share with you, how I explored these three strands. It’s not the only way and it certainly won’t work for everyone, but one of the things that helped me, was hearing what helped other people, so hopefully it will be a useful sharing.
Neurodivergence in general
I already had a basic understanding of the neurodiversity paradigm from my time as a disability practitioner, but things change quickly in our community and what we know and understand is always evolving. I had to go back and catch up with what I’d missed, as well as reading it with through the lens of lived experience, not just as a professional.
As I learnt more about the neurodiversity paradigm, I devoured memoirs and podcasts of other people sharing their experiences, I read academic books and research on neurodivergence. I mapped out the knowledge landscape as a whole, and then zeroed in on the areas that seemed to most resonate with my experience. This part particularly helped me discover a language and a framework to understand and notice my own experiences. (It was where I first came across Nick Walker and the term neuroqueer, which made a huge difference to me.)
This led me onto the second strand
How my own neurodivergence shows up
Despite making the decision to get a formal autism diagnosis, I wasn’t given any support with figuring out how my spikey profile worked. The assessment was very deficit based and relied mostly on me presenting the evidence I had uncovered to support my self-realisation as an autistic person. I knew I needed to know more about my specific experience to be able to find ways of living that worked for me.
So, I started the process mapped out my own spikey profile, noticing where I was hyper or hypo sensitive, I learnt about how my brain processes information. I discovered what activities took the most energy and where I found ease in my life. I started the process of unmasking and discovering the self that I had spent years hiding away.
Some of this was full of joy (getting my first lego set) and some contained grief (realising quite how limiting some of my needs could be). The work I’d done in the first strand supported this process and the community I’d found there (even as a lurker) reassured me that I was not on my own.
Which is why the final strand was so important, because we don’t exist in a vacuum.
My Context
As a student I’d loved Althusser’s work on ideological and repressive state apparatus and as a queer, woman I was well aware of how having a part of your identity that is ‘othered’ in our society can have impact on all areas of your life. So, for me, exploring this area was an expansion of this knowledge, a recognition that although my self-realisation didn’t change who I was (I had always been autistic) it did give me a different lens to understand some of my experiences. And there were certainly other people who would respond to me differently once they saw this part of me too.
I had to look at the systems and structures I exist within and notice how my neurodivergent identity might shift my position within them. This included navigating healthcare, work and my own relationships with family and friends. Again there was space for grief and joy as I received a whole host of responses to this newly excavated facet of my identity.
I also had to understand the societal context, looking at neuro-normativity, ableism and all the other societal norms and expectations that I now knew I might always struggle to meet. In some ways this was helpful, if allowed me to start to bring in some compassion for my socially awkward self, and over time I have shifted what is reasonable to expect of myself to something more sustainable. But again, there was grief here, I had to come to terms with acknowledging the things that would always be hard, and the situations where no reasonable adjustments could completely remove the difficulties.
More often than not, there was an amount of unlearning to do, to make space for this new knowledge. Letting go of old assumptions and making space for a greater understanding of ourselves and our context.
It was all of these strands of knowledge that helped me to notice; that brought into the light the things I had missed, dismissed and avoided. Because once we know we can’t ever go back to not knowing (and I’ve tried really hard with some things).
The knowing allows me to notice more, in the moment, and that noticing gives me the opportunity to be curious about what’s happening and the curiosity makes it possible to make changes.
And because of the thread of understandings, I know that it’s not about having to change who I am, but it’s about changing how I respond. It’s about moving towards kindness and compassion and staying away from blame and shame.
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