Hi, my name is Charlie Hart, and I am also known on social media as ‘Ausome Charlie’. Yes, that is ‘Ausome’ with an ‘Au’ for ‘Autistic’ - one of my self-assigned labels right there! I am a neurodiversity inclusion keynote speaker with a background in HR Analytics.
Starting to Self-Assign Labels
When I realised that I was autistic in 2018, I set up social media channels under the handle @AusomeCharlie to share my journey and learn from others with lived experience. This led me to thriving mutually supportive communities using the hashtags #ActuallyAutistic, #Neurodiversity and later #AuDHD.
After feeling like an outsider and a failure for so many years, the labels ‘Autistic’, ‘Neurodivergent’ and ‘AuDHD’ helped me learn to accept myself, then to start advocating for my needs, and to promote understanding and acceptance for all neurodivergent people through my work. Power can be found in labels, and from the community they help us to find.
The Validity of Self-identification of Neuro-Differences
For adults, self-identification often comes first. It must, for most adults who suspect they have a neurodevelopmental condition. Self-identification usually comes from both research and introspection (not from watching TikTok’s).
Look at my story: I had been experiencing anxiety states and recurring depression between 2003 and 2018, that is 15 years!
My doctor prescribed Propranolol (beta blockers) to alleviate the physical symptoms of my anxiety states, and Citalopram (Selective Serotonin Reuptake Inhibitors) for depression.
Me, I constantly pushed for answers about why my mental health was so fragile. I tried psychotherapy, mind-mapping, battling demons, cognitive behaviour therapy (CBT), self-help books… yet still the depression would return.
I was 99% sure I had bipolar disorder at one point, and I begged my doctor to refer me for assessment. When I was triaged by a psychiatric nurse, I was told: “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 counselling, to build psychological skills.
No medical professional EVER suggested Autism or ADHD, despite my family history (my brother is also autistic and hyperactive).
Then in 2018 came my autistic identification, 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, lacking in self-compassion and unable to advocate for my needs.
Professional diagnosis is usually just a rubber stamp on what we already realised about ourselves. My school reports and performance reviews are riddled with signs of autism and ADHD, and personally I do not think I have ever passed for ‘normal’.
Image description: ‘Disconnect’ comic strip commissioned from Piper Strange Art by Ausome Charlie. Pane 1 depicts Charlie in a psychiatrist’s office for an autism assessment, the psychiatrist (a woman wearing a hijab) is saying ‘There’s a disconnect between your intent and how you come across. You clearly have autism’. Pane 2 depicts Charlie leaving the appointment smiling, and immediately texting her manager, Jayne. Text message to Jayne says, ‘I was right, I am autistic’ and Jayne’s reply says ‘Congratulations! Well, I assume you’re happy about it?’ and Charlie’s reply says ‘Delighted!’
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 adjective ‘neurodivergent’ which is a positive and affirming socio-political label- not to be mistaken for a medical diagnosis! It does not make sense to me to juxtapose medical terminology with the language of the ‘Neurodiversity Paradigm’ therefore it does not make sense to be ‘diagnosed neurodivergent’ nor to refer to ‘neurodivergent conditions’).
I do recommend professional diagnosis, unless you are concerned about a diagnosis being career-limiting, or negatively impactful in some way, e.g. in the family courts, but I believe self-diagnosis of neurodevelopmental conditions is valid. There are so many barriers to diagnosis, and professional diagnosis is a privilege denied to many marginalised folks.
The ‘Neurodiversity Paradigm’ proposes that neurological diversity is advantageous within human populations - just as biodiversity is within an ecosystem.
The Power and the 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 neutral 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, and not intrinsically who I am.
The role of labels is highly individual, and an entirely personal choice. For example, 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 in my life, convincing ourselves we cannot socialise without getting drunk.
Person-First Language versus Identity-First Language
We should all respect the individual’s personal choice. Their choice may depend on whether the individual sees the label as an adjective describing them, or a pathology. Also, whether they chose the label or was it foisted on them by adverse circumstances (I dislike the label ‘bereaved parent’, it is not inherent to my own identity- only my tragic circumstances).
I like to describe myself as ‘AuDHD’ because Autism and ADHD are, in my view, just adjectives describing me, but when I refer to Complex PTSD, I use person-first language, so 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).
Image description: ‘On the spectrum’ comic strip commissioned from Piper Strange Art by Ausome Charlie. Pane 1 depicts Charlie balancing on a tightrope, thinking ‘I used to be on the spectrum’. Pane 2 shows Charlie falling off the tightrope, thinking ‘but I fell off’.
Who can Identify as Neurodivergent?
‘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 standard-issue typical brain, that the way their mind works diverges from the dominant societal expectations of ‘normal’.
And, yes, ‘neurodivergent’ does include people whose cognitive functioning or neural pathways have been affected by mental health conditions.
Kassiane Asasumasu, who coined the term ‘neurodivergent’ explicitly includes psychiatric conditions, and they said the term is intended it to be inclusive, not exclusive.
Why gatekeep anyway? If it is helpful to you, then use it to describe yourself (but maybe avoid projecting it on others, unless you know they identify as neurodivergent).
‘Ally’ however is often self-assigned, whereas 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?
The Superpower Narrative
Let’s delve into the idea of neurodivergence 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 a social justice movement, not capitalism. We are not here to continue the work of Frederick W Taylor, or Hans Asperger!
‘Low-functioning’ denies value and agency. ‘High-functioning’ denies support and minimises our struggles. ‘Mild autism’ suggests the existence of ‘spicy autism’, but autism is a ‘dynamic disability’ - its impact fluctuating, and highly contextual.
‘Disabled’ is OK
And I identify as 'disabled' (the adjective) as I can be disabled (the verb) by inaccessible environments, systems. policies, processes, and neuro-normative expectations.
I can also be enabled by accessibility, consideration of needs, being believed and accepted.
There is nothing wrong with identifying as 'disabled'… if we can reject capitalist ideals and judgements about the value and worth of human beings. In my view, avoiding the adjective ‘disabled’ like it is a dirty word is unnecessary and stigmatising (acknowledging that I speak English, and I live in the UK, and there are linguistic and cultural differences to consider elsewhere). Different is OK. ‘Disabled’ is OK.
Recommended 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/