Respecting Individual Neurodivergent Identities

Everybody is different, and everybody has their own sense of identity. Here, neurodiversity advocate Sarah Duggan shares her own journey – and the importance of respecting individual preferences!

“Definitions belong to the definers, not the defined.” – Toni Morrison

I have always been extremely open about the fact I was diagnosed with autism and ADHD in my twenties, but a recent interaction with one of my peers in the neurodiversity space got me thinking about this more than I have before.

They pointed out that it is still relatively uncommon to come across people who are as open as I am about their “neurodivergence” so my openness, they suggested, is something that is particularly special about me; something to be admired and celebrated.

I didn’t initially take the compliment as it was intended, though, I’m afraid.

In the years since my diagnoses, you see, I’ve felt increasingly like I’ve been left with little to no choice but to declare my autism and ADHD straight off the bat and for a while, I thought the more neon-lit the sign was that I brandished above my head the better!

It turns out this is what being so habitually misunderstood by others and even misunderstanding yourself to some extent can do to you.

After receiving my autism diagnosis in 2017, for example, I jumped straight onto social media to share “the news” because I felt like I “should”, without giving myself even a second to process what this meant to or for me. Along the way, I tried on just about every single label for size that society might use to describe me, including “autistic”, “neurodivergent” and “disabled”. However, continually bending over backwards to try to fit into the “neurotypical” world only ever resulted in a very painful, confusing and drawn-out identity crisis, which coincided with my first year working as a strategic advisor on neurodiversity inclusion.

Ultimately, I allowed my diagnoses to define me and almost explained myself away.

I stumbled across an online newspaper article around this time, featuring interviews with other women who had been diagnosed with autism at various stages of adulthood. Some reflected on how empowered they felt afterwards; they talked about how everything finally “clicked” into place for them and the moment they found out that they were autistic felt like a rebirth. I never felt that way, though. Instead, I was stricken almost immediately by a profound sense of loss that I struggled to make sense of – let alone articulate – until last year.

I could never have been the same person I was when I arrived for that fateful diagnostic assessment as when I left later that day with confirmation that I hadn’t fully known myself before, but the truth is I never did lose myself either. Not for a second. It just felt a bit like I did as I got squished under layers upon layers of other people’s/society’s “stuff”, which I took on as my own.

Declaring my autism and ADHD was my way of responding to this. It felt like a kind of pre-emptive strike against myself; a self-protective reflex that imperceptibly became my default position over time. I was desperate to “get in first” and explain myself before anyone else had the chance to notice for themselves anything that may have marked me out as “different”, in their opinion. I thought this would mean I’d no longer have to contend with feeling like I was simultaneously “too much” and yet never quite enough. However, in reality, my compulsion to declare my autism and ADHD just made everything worse as the recognition crept up on me that my othering of myself in this way was, perhaps, a very sneaky form of self-harm.

In terms of where I’m at now with my relationship with my diagnoses, I’m still happy to talk about my autism and ADHD if it’s relevant and adds value to the conversation and/or situation and I feel comfortable doing so with the people I’m interacting with. There is one main reason for this which, for me, is well worth celebrating and that is by being open about my autism and ADHD, I am unconsciously giving those around me permission to do the same. However, there is a gulf of difference between taking a more considered approach to openness and leading with the fact I have autism and ADHD whenever I meet a new person, as if I’m introducing myself as part of a 12-Step Programme which, for me, feels not only completely unnecessary but counter-intuitive at this point.

With all this in mind, how can we foster a culture of open, honest and thoughtful communication in the workplace to bring others into the neurodiversity conversation, build meaningful connections, and drive lasting change, where inclusion is concerned, to futureproof businesses?

Well, it’s really quite simple!

The whole point underpinning the concept of neurodiversity is that, as human beings, we are born with unique nervous systems, meaning we experience the world differently to each other, so it should be up to individuals, surely, to self-define in any way that feels right and good for them (if they even wish to at all)? If we agree on this, might I suggest that before you fall into the trap of making assumptions about “neurodivergent” individuals’ identities and their life experiences, based on nothing more than your own perceptions of their differences, that you ask them what they think and how they feel about this?

If we come to the neurodiversity conversation with open hearts, minds and ears, we can collaborate more effectively to minimise the pressure largely felt by neurodivergent individuals to chase the deeper sense of belonging that disproportionately eludes them, thanks to the impact of internalised ableism. 

Sarah Duggan is a neurodiversity advocate who writes and speaks for Uptimize and other organizations.

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