It took me a long time to find out why I am the way I am. Why my senses are turned up to 11, why socialising is so exhausting. I had spent so many years thinking that no one else was experiencing life and the world in the same way as me.

Identity and diagnosis

After working with Disabled children in the youth sector the picture became clearer: I am neurodivergent (Why Youth Work Gives me Autistic joy). I was fortunate to get multiple diagnoses some years later (My Autistic Diagnosis Story) and a part of me has clung onto them ever since. 

These labels have been powerful and liberating for me but the longer I hold onto them, the longer I feel they entrap me. 

I feel the same with chronic illnesses, which have helped me come to my ‘fewer labels’ conclusion. I don’t want or need to list all the things that my body doesn’t do well. I don’t need these things to be judged or imprinted on to me, for people to tell me what I can’t do or must do (tell me about yoga one more time I dare you). 

Sharing my labels

When I share these labels or identities they’re not met in the way I think they might be. The responses are mixed and for the most part neuro-normative people aren’t interested, or they start talking about their nephew who shares the same diagnosis (I’m not a six year old boy who is having issues in school – just to be clear). Sharing these labels and identities seems relatively pointless to me in most cases, and if identity is socially constructed then do my labels exist outside of telling others? (I’m sure I shall pick this up in another blog sometime).

At one point not too long ago I also wanted to be very clear on my gender – is it layered? Multitudinous? Do I even have one? The label doesn’t matter to me now, as long as people use and respect my pronouns. 

Community-building through shared identities

As I begin to shed my labels I reflect that they have been immensely helpful for me to understand and appreciate myself more. They have also been useful in finding similar others.

I’ve been fortunate to find some online spaces, groups and friends who share a lot of the same identities, interests, and ideals as me. This is great and has helped me build on my self and community understanding as a newly realised gender and neuro queer individual. 

However, some of these spaces have created echo chambers where people don’t challenge perspectives or things which are painted as the Autistic experience (or perhaps I’ve only just noticed this). These spaces usually centre euro-colonial and white experiences, one of the reasons misogyny, racism, and misogynoir runs rampant in some Autistic spaces and pages. There are alsi rules which are left unsaid (which has been so useful to many of us in the past har-har) and the hierarchies of whose stories or opinions we should listen to still exists.

Taking the Autistic label to the highest degree meant that I’ve missed out on opportunities of looking outside of myself. I’ve got so much to learn and discover about the world, other people, and other cultures. Yet I’ve been stuck on who I am, what I am, what others have told me I am. I’ve lost that connection with others who don’t share my experiences, labels or identities. 

Rearranging my labels and identities

I’m still Autistic and Living the Dream (I suppose that’s my ‘brand’ now?) but I’m so much more. A list of words and identities doesn’t really begin to scratch the surface of my experience and it’s making me more insular than I’d like. 

Yet these labels also connect me to others. When I do research with people I share identities or life experiences with, it’s important they know who they’re sharing their stories with. If this experience can be conveyed in a few labels then that makes things easier for everyone.

Going forward I will only share specific labels to support others or to get accommodations myself. The world doesn’t need a list of my embodiments.  

I’m reveling in the shedding of labels whilst appreciating the immense privilege I have to know who I am, to have words for my experiences, and the resources to find my own.