Neurodivergent self-labelling and identity

I am Charlie Hart, also known on social media as ‘Ausome Charlie’. Yes, that is ‘Ausome’ with an ‘Au’ for ‘Autistic’, so there’s one of my own positive self-labels right there!

1. Self-labelling and its significance When I realised I was autistic in 2018, I set up the Twitter account @ AusomeCharlie and found a thriving mutually-supportive community within the #ActuallyAutistic and #Neurodiversity communities. After feeling like an outsider and a failure for so many years, the labels ‘Autistic’ and ‘Neurodivergent’ helped me to accept myself, and learn self-compassion.
2. The validity of self-diagnosis in conditions like ADHD and Autism For adults, self-diagnosis often comes first. It has to for most adults who suspect they have a neurodevelopmental condition. Self-identification comes from both research and introspection. Look at my story: I had been experiencing anxiety states and recurring depression between 2003 and 2018, that is 15 years. My GP prescribed beta blockers for the anxiety states, and Citalopram for depression. Me, I constantly pushed for answers about why my mental health was so fragile. I tried psychotherapy, mind-mapping, battling demons, CBT, self-help books… still it came back. I was 99% sure I had Bipolar Disorder at one point, and asked my GP to refer me to a specialist, who assessed me and said, and I quote: “Bipolar disorder is cyclical, but you can identify specific triggers, you tell me you become depressed after extended periods of stress, so it is likely this is just anxiety and depression”. She suggested generic counselling, to learn psychological skills. No medical professional EVER suggested Autism or ADHD, despite my brother having both. I identified my own autism in 2018, after it was picked up in my son. Without that epiphany, at the age of 42, I would still be struggling to cope, regularly in distress, with no self-compassion. Professional diagnosis is usually just a rubber stamp on what we already realised ourselves. I was later diagnosed with ADHD as well, which again started with self-identification. I had been describing myself as AuDHD for a while. A queer AuDHDer in fact, as I prefer identity-first language and I like rhymes. I still use the label ‘neurodivergent’ which is a positive and affirming socio-political label, not to be mistaken for a medical diagnosis. I do recommend professional diagnosis, unless you are concerned about a diagnosis being career-limiting, or negatively impacting in some way, e.g. in the family courts, but I believe self-diagnosis is valid. There are many barriers to diagnosis. Professional diagnosis is a privilege denied to many marginalised folk.
3. The Power and Paradox of Labels Some labels are positive, life-affirming even, some may be unhelpful and self-limiting. Labels impact individuals, teams, and organisations in various ways. Labels play a role in shaping one’s identity and self-perception. ‘Anxious’ is not helpful to me. I need to understand the stressors, and how I can avoid them, how to mitigate their impact on me, or take the sting out of them. If I label myself ‘anxious,’ this is not a harmless adjective to me; it is self-limiting. If I was a donut, my Autism is a core ingredient, part of the dough. Anxiety is just sprinkles. The role of labels is highly individual, and an entirely personal choice. E.g. some people find comfort in the self-label ‘introvert’. Others may limit themselves with this, avoiding social occasions, possibly missing out on something they may otherwise have enjoyed, or like me at times, convincing ourselves we cannot socialise without copious alcohol.
4. Person-first language versus Identity-first language We should all respect the individual’s personal choice. It may depend if the individual sees the label as an adjective describing them, or a pathology. Also whether they chose the label, or was it bad circumstances (I reject the bereaved parent label, it is not inherent to my identity, but I was not given a choice). I like to describe myself as ‘AuDHD,’ as Autism and ADHD are, in my view, just adjectives describing me, but when I refer to C-PTSD I use person-first language; I call myself an AuDHDer but not a C-PTSDer. Often I don’t mind either way; I have blonde hair, or I am a blonde, and that makes no difference to me (but I can change my hair colour, not my neurotype). I respect other people’s preferences when they are describing themselves, but I tend to get stroppy if others tell me how I must describe myself (’able-splaining’ their person-first language at me as if it is up to them how I should self-identify).
5. Neurodiversity Paradigm versus Pathology Paradigm Let’s consider the Neurodiversity paradigm. Neurodivergent is an ‘opt-in’ label. It can be very affirming, but when using it we need to remember this is a socio-political term not a medical diagnosis. Anybody can call themselves neurodivergent if they believe they do not have a bog-standard typical brain. Yes, ND includes people whose neural pathways have been changed by mental health conditions. Kassiane, who coined the term ‘neurodivergent’ explicitly includes MH, and said the label it is intended it to be inclusive, not exclusive. Why gatekeep. If it is helpful, use it. ‘Ally’, however is often self-assigned, whereas actually it is up to those in whatever marginalised community you claim to support whether they see you as their ally or not. Do you do any active acts of allyship? Are you an active bystander? Likewise, ‘leader’. Manager is a job function, a job title, but to become a leader, you must inspire people to follow you. Not all leaders are benevolent, look at the Pied Piper of Hamlyn!
6. The Superpower Narrative Let’s delve into the idea of neurodiversity as a superpower. Humans should not need super strengths or extraordinary skills to be considered valid, or valued, members of society. Every individual has their strengths and weakness, and inherent worth. The neurodiversity movement is supposed to be a social justice movement, not capitalism. ‘Low-functioning’ denies agency. ‘High-functioning’ denies support, and minimises our struggles. The ‘neuro-spicy’ self-label is fun! It comes from ‘mild autism’ which suggests the existence of ‘spicy autism’. Autism is a ‘dynamic disability’ though, so its impact fluctuates. Sometimes mine is korma-strength, and other times it is madras-strength.
7. Recommended further reading Throwing away the master’s tool’s: Liberating ourselves from the pathology paradigm. by Nick Walker PhD (she/her) https://neuroqueer.com/throw-away-the-masters-tools/