The story within a story 😉
In just over 24 hours, I will be going back to the room where I was assessed for autism last year (I’d asked my ex-husband to stand in as my childhood developmental witness – probably not my best idea!).
I met with my assessors twice afterwards to hear that while I clearly show autistic traits, a lot of my behaviours were put down to early trauma and where I was eloquent in describing my autistic experiences and able to hold eye contact (because I was talking about neurodiversity :P). I was told I didn’t fulfil the clinical threshold for diagnosis. I found the whole process of gender-, culture-, and life circumstances biased to the young white boy’s experience. I had not accepted the decision, hoping that my “ostrich in the sand” method meant I didn’t have to face the re-traumatisation of not getting the validation I needed.
As a 43-year-old woman whose job is a storyteller and who has immersed my children in countless fairytales and stories, I was assessed to see how I told a story with a wordless picture book. I did it well. Another strike.
I was asked if I had any unusual hobbies – for me, it’s reading all there is to know about human behaviour – my apartment is filled with books I’ve yet to read past the first chapter. This was deemed “normal” and “part of my work” – they won’t think it’s normal when they see how much I’ve spent on books in the past year alone!
I was asked if I made friends easily as a child. I’ve always had friends. I don’t know what I look like when interacting with them, but my mum always said I was bubbly and energetic. But with everything I told them about myself, the further I felt removed from the criteria for an autism diagnosis. While the sad bits were put down to trauma. Is trauma irrelevant?
I learned to pay my bills independently for the first time since my divorce. I can cook myself and others a meal; I can even host dinner parties – all this further means I have low support needs and don’t appear autistic. Even if I usually need much muted time to recover after peopling.
Even if where I struggle most is working out people’s intentions.
Even when I struggle with sudden changes.
Even when faced with a crisis, I can struggle to feel my feelings and logically analyse everything.
Even if it’s in my biology.
I’ve given my assessors a lot of research to study, even the papers that cite our biological differences and my gene methylation results, which show some usual suspects, e.g., vitamin D, COMT, and MTHFR snp. Still, they’ve said they are not well-versed in the genetics and metabolism.
A few months passed, and no one wrote back to me, and we are finally going to try and “finalise” my diagnosis tomorrow.
Who even am I?
See, I’m not just autistic. I’m an autistic and ADHDer – I’m one person, an AuDHDer – not a sum of two opposing parts – but AN ENTIRELY DISTINCT WHOLE PART OF ME – not just ruled by brain dynamics, but we can start there.
A 2023 research has shown that the AuDHD brain has completely different brain dynamics compared to ADHD or autism alone – it seems that as AuDHDers, we are a blend of autistic social communication patterns but different to pure ADHD in terms of the prefrontal cortex (PFC) activation. In plain English, this means that it’s not that your PFC will always have reduced activation; it’s that it’s unpredictable and affects the neural networks in the rest of the brain.
There’s plenty of both chaos and rigidity here. Explains the internal tug of war we constantly face. We need a completely different set of diagnostic criteria and “treatment” strategies. Bear in mind that this research was done on kids. This is before you layer on:
- Our biology as women,
- the socialisation that made us incredibly good at being what other people want us to be, with more socially conforming motivation to mask, mimic, and observe so we can be in relationships with people,
- the life that happened to us, the stuff we got ourselves into that impacts how we show up
If this is my experience, I know I’m not alone.
Plans for the community and people who work with us, built on the power of lived experience
Due to other personal circumstances that had led to me feeling silenced, I have a deep urge to create a safe space where AuDHD women can come together and learn from each other in a space that creates the connection, belonging and safety that I know so many of us need and want. These are my plans for the first half of 2025:
- a LIVE community event for AuDHD women to build emotional safety within ourselves from the inside out
- a series of community talks supporting autistic ADHD parents with ND kids
- a train-the-trainer programme for anyone working with autistic ADHDers
- ADHD life and work skills programme within organisations
- more neurodiversity & women’s empowerment talks
- a retreat
Let me know what you’d like to see in these plans. I’ll send the details as soon as I have it all ready!
#AuDHD #WomenWithADHDAndAutism #Neurodiversity
