Neurodivergent self-labelling and identity: The Power and the Paradox
An informal discussion between Charlie Hart and Georgina Shute, exploring the complexities of neurodivergent self-identifying and labels, delving into the validity and impact of self-diagnosis.
Gina: Neurodivergent self-labelling and identity can be both powerful and paradoxical (something with two meanings that don’t make sense together). My guest today is Charlie Hart, HR Consultant, neurodiversity advocate, and public speaker, also known on social media as ‘Ausome Charlie’.
Charlie: Thanks, and yes that is ‘Ausome’ with an Au for Autistic, so there’s one of my own positive self-labels right there!
Gina: What is self-labelling, and how is it significant?
Charlie: When I realised that I was autistic, in 2018, I set up the Ausome Charlie Twitter account and found a mutually supportive like-minded community within the hashtags #ActuallyAutistic and #Neurodiversity. After feeling like an outsider and a failure for so many years, the labels ‘Autistic’ and ‘Neurodivergent’ helped me to accept myself, find community, and develop self-compassion.
Gina: How valid do you think self-diagnosis in neurodevelopmental conditions like ADHD and autism is, and what are the implications?
Charlie: For adults, self-diagnosis often comes first. It has to for most adults who suspect they have a neurodevelopmental condition. Self-diagnosis comes from both research and introspection.
Look at my own story. I had been experiencing ‘anxiety states’ and recurring depression between 2003 and 2018, that is 15 years. My GP prescribed Propranolol beta-blockers for my anxiety states, and Citalopram for depression. I constantly pushed for answers about why my mental health was so fragile. I tried psychotherapy, mind-mapping, battling demons, CBT, self-help books… yet still depression always came back. I was 99% sure I had bipolar disorder at one point, and insisted my GP referred me to a specialist, who assessed me and said, “but bipolar disorder is cyclical, and you can identify specific triggers; you tell me you become depressed after extended periods of stress, so it is more likely this is anxiety and depression”. She suggested counselling or CBT, to teach me some psychological skills. No medical professional EVER suggested Autism or ADHD to me, despite my family history, so I had to identify 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 feeling nuts, struggling to cope, often in distress, lacking in self-compassion. I now believe the anxiety states were autistic meltdowns, and the depression was autistic burnout. They do appear similar in presentation to the outside observer.
Self-diagnosis is valid, and formal diagnosis is often just a rubber stamp on what we already found out.
One word of caution: it is too easy to home in on the first label you strongly identify with, then incorrectly this is the answer to everything. I certainly did when I was younger. I once thought the book Adult Children of Alcoholics explained everything about why I am like this. We humans are never that simple; we are complicated intersectional beings, the sum of our physiology and our experiences. One identity label is just a piece within the whole picture of who we are.
Next week, I have my assessment for ADHD, with Psychiatry UK, and I fully expect to be diagnosed with that too. If not, I may have to publicly eat my words, as I have been describing myself as ‘AuDHD’ for several months. A ‘queer AuDHDer’ in fact, as I prefer identity-first language and I like rhymes. I would still use the label ‘neurodivergent’ though, which is a positive and affirming socio-political label, not to be mistaken for a medical diagnosis.
I do recommend professional diagnosis, especially for ADHD, unless you are concerned about a diagnosis being career-limiting, or negatively impacting in some other way, for example in the family courts, but I do believe self-diagnosis is valid.
Anyway, there are many barriers to diagnosis; not just long waiting lists, initial screening can be biased and discriminatory, diagnostic criteria too rigid and stereotyped.
Gina: The Power and Paradox of Labels – what do you think are the potential benefits and contradictions of self-labelling?
Charlie: Some labels are positive, life-affirming even, while others may be unhelpful and self-limiting, but this is often highly individual.
Gina: Using labels as identifiers. We have covered so many fascinating aspects of self-labelling! How do you think the roles of labels have shaped your identity and self-perception?
Charlie: ‘Anxious’ is not helpful to me. I need to understand my anxiety triggers, and how I can avoid them or mitigate their impact on me, take the sting out of them. If I label myself ‘anxious,’ it is not a harmless adjective; it is self-limiting. Like, if I were a doughnut, my Autism would be a core ingredient, part of the dough. Anxiety is just sprinkles, and I would scrape them off if I could. It is not who I am.
And ‘PDA’ is a funny one. Another neurotype, some believe PDA is a specific profile of the autistic spectrum, while others believe it is a separate condition. ‘Pathological Demand Avoidance’, by definition, does not sit well with the neurodiversity paradigm, it’s more like the pathology paradigm. It may help individuals understand why they struggle with obeying instructions or getting on with what they are supposed to be doing, but it can again be limiting, for example, someone identifying as PDA may believe they are unemployable. That may be a self-fulfilling prophecy. I like the idea of rebranding PDA as ‘Persistent Drive for Autonomy’.
The role of labels is highly individual and should be an entirely personal choice. For example, some people find comfort in the self-label ‘introvert’. Others may find this limiting, and therefore avoid social occasions, possibly missing out on something they may otherwise have enjoyed, or like me at times, convincing ourselves that we cannot enjoy social occasions without getting drunk.
As for person-first language versus identity-first language, again, we should all respect the individual’s personal choice. This may depend on whether the individual sees the label as an adjective describing them, or a pathology. Also, did they choose the label, or did it arise from their circumstances? I reject the ‘bereaved parent’ label, as it is not inherent to my identity, and I was not given any choice. I like to describe myself as ‘AuDHD’, which is identity-first language, because Autistic and ADHD to me are neutral adjectives, and I see no issue with making them part of my identity. However, when I refer to my C-PTSD, I prefer person-first language. I call myself an ‘AuDHDer,’ but I am not a ‘C-PTSDer’. I am AuDHD, but I have C-PTSD. 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 could change my hair colour, not my neurotype). I might say ‘I have autism’, or ‘I am on the autistic spectrum’, but I would never say ‘person with…’ because ‘I am a person with blonde hair’ sounds wrong to me. It should just go without saying that I am a person, I should not have to labour the point to remind people.
I respect other people’s personal language preferences when describing themselves, but I can get stroppy if they try to tell me how I must describe myself, for example someone who left this comment on one of my LinkedIn posts being autistic and bisexual, “you ARE bisexual, but you HAVE autism”’. Please don’t be that person (an ‘able-splainer’).
Gina: How can labels influence the paradigm through which individuals view themselves?
Charlie: 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 understand they do not have a typically wired brain for whatever reason. And yes, ‘neurodivergent’ does include people whose neural pathways have been altered by mental health conditions, accident, or brain injury. Kassiane, who coined the term ‘neurodivergent’ has often clarified that it explicitly includes mental health conditions and is intended to be inclusive, not exclusive. Let’s not gatekeep; ‘neurodivergent’ is not a diagnosis, so if the individual finds it helpful, then they can use it.
‘Ally’, however, is often wrongly self-proclaimed. The onus should be on the community you support to decide whether they see you as their ally. Likewise, ‘leader’. ‘Manager’ is a job function, a job title, but to become a leader, you must inspire people to be led by you.
Gina: How about neurodiversity as a ‘superpower,’ what are your thoughts on that narrative?
Charlie: 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 about assigning value to people (which is more of a capitalist principle).
Think about functioning labels too, and why they can be damaging. ‘Low functioning’ or ‘severe’ denies agency, while ‘high functioning’ or ‘mild’ can deny access to support and lead to people disbelieving us about our difficulties. The ‘neuro-spicy’ self-label is fun! That comes from ‘mild autism,’ which implies the existence of ‘spicy autism’. Autism is a ‘dynamic disability’ though, its impact fluctuating. Sometimes mine is korma-strength, but other times it is madras-strength.
I was told in my last job that we avoid using the word ‘disabled’ as some people find the term ‘offensive’. Well, I am offended by their stance on this. ‘Disabled’ is not a dirty word, it is neutral. Hiding behind flowery language only perpetuates the stigma.
Gina: Our conversation has explored the significance of self-labelling, particularly in neurodivergent contexts, as a crucial step toward self-acceptance. We talked about the validity of self-diagnosis and the individual impact of labels on identity. And emphasised the socio-political nature of terms like ‘Neurodivergent.’ This discussion highlighted the need for a nuanced understanding, beyond simplistic labels.
Charlie: Here is some further reading that I recommend:
‘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/
The #WeirdPrideDay hashtag on social media. Weird Pride Day is on 4 March every year, since 2020. Started by Fergus Murray, this is the legacy of their mum Dinah Murray who coined ‘Weird Pride’ and put it on badges. Dinah was one of the pioneers of the theory of ‘monotropism,’ currently a hot topic among autism advocates. Weird Pride is about taking back ‘weird,’ and refusing to be shamed for weirdness. My son Iggy was picked on for being weird, but to us he was weird and wonderful. Owning the narrative with pride, rejecting shame, shifts the power of labels to our advantage.
#Identity #Labels #Neurodiversity #Neurodivergent #AuDHD #IdentityFirstLanguage #WeirdPrideDay
Ausome Charlie 