If you follow me online (anywhere) you’ll already know that I was diagnosed with ADHD and autism when I was 39: I’m now 41, and have spent the past few years (leading up to and since my diagnosis) doing mountains of research on the subject.
When I graduated from university – with a degree in Creative Writing and Contemporary Culture – I wanted to go on to do a Masters (and eventually a PhD) and was actively putting steps into action to study the psychology of gender / women – but I found myself unexpectedly pregnant, with a very small support network, a relationship that was already very rocky, and then we both lost our jobs (and because of that, lost our rented flat- because 2008 wasn’t a great year for employment and property!)
Not once have I regretted putting my studies on hold to have my first child – who was followed within two years by my youngest child: they are the greatest joy in my life, and my biggest achievement. But now they are both teenagers, and I feel ready to go back to that original plan for further study – and have an enormous amount of life experience gained in the years since that I think will make me more successful in studying: if I believe that the universe has its own plans, I can see that studying back then wouldn’t have led to the success I wanted – because I needed to be ready for what I was going to learn. Tr be ready to learn, there were many things I needed to already have learned. (And if you knew my maternal grandmother, Nanny B, you’ll remember how many times she advised that I could, in fact, learn from other people’s mistakes rather than making them all for myself – but it seems that ‘the hard way’ is the only way I’m able to learn a lot of things…)
Like many women who were diagnosed later in life with any kind of neurodivergence, it was the combination of having my children diagnosed and the impact of perimenopause on my own coping strategies that led me to being assessed.
Filling out forms that explored the traits, challenges and behaviours my neurodivergent children presented with was eye opening: I can’t tell you how many times I thought “but that’s just everyone…” and “isn’t this just how we all feel?” – and when I said that to the psychiatrist in their assessments his response was very clear. “No – it’s not everyone – but we do believe that autism and ADHD are genetic…”
Of course they are. And of course there needs to be an enormous amount of research done into this, by people far more qualified than I am. This research also needs to be carried out specifically looking at women and girls – because we are so often overlooked, misdiagnosed and ignored – because the diagnostic criteria have been built around little boys. Overwhelmed little boys. We don’t get diagnosed – or even assessed – because we aren’t little boys – so of course our neurodivergence looks different. Everything about us is different!
There is a wealth of information available online, and from well respected medical bodies, about the differences in how ADHD will present in women (read more here) but here are just a few of the obvious examples:
ADHD in women primarily means a greater likelihood for the following:
- inattentive symptom presentation, including, per the DSM-5
- failing to give close attention to details or making careless mistakes in activities
- trouble holding attention on tasks
- not following through on instructions and failing to finish duties (e.g., losing focus, getting side-tracked)
- trouble organizing tasks and activities
- getting easily distracted
- forgetfulness in daily activities
- internalizing symptoms, including mood and anxiety.
Sound familiar?
Looking at that short list it’s not surprising to hear that most women and girls are diagnosed with some kind of anxiety disorder or mental health issue, and offered medication or talking therapy, which never helps – because the diagnosis isn’t correct, so the treatment can’t possibly be correct!
Worse, when you have an undiagnosed neurodiversity, you do develop anxiety and mental health problems, because you’re essentially living life in hard mode, and internalise the blame, the frustration, the guilt and shame, that comes with inevitably burning out, failing at things, and struggling to cope – and because those consequences lead to anxiety and depression you can’t even argue with the ‘professionals’ and demand they dig deeper – because they’re half right…and so you instead blame yourself for continuing to struggle. For continuing not to ‘just get on with it’ or ‘live up to your potential’.
When I asked to be assessed I was at one of the lowest points I’ve ever been. The pandemic had derailed everything, globally, for everyone, and every single thing I’d ever put in place to help myself perform the role of ‘functional adult’ stopped working. I stopped working. I totally broke. And in my desperation to feel less alone and lost, I – as I’ve always done – went seeking my tribe. My community. That ‘village’ we all need to function. I went looking for answers, and found myself on TikTok…
TikTok – the fastest growing, most addictive social media platform in the world. The app that feeds addictive behaviours, that people use to connect to each other, that pings little bursts of dopamine to your brain in bite size pieces, that sucks you in and can lose you hours of your life. I wasn’t alone in finding myself there through the pandemic, and have built myself a nice community on the platform. I’ve made some amazing friends, seen a vast range of lived experiences, and been shaped by (and shaped) their incredible algorithms.
If you don’t know me in real life you might not know what I do for work (and I promise this segue is relevant) – I am a copywriter, and I lead social media training programmes for businesses, teaching people how to build an audience, how to engage that audience, and how to create content that connects on a real, human level. This all stemmed from the degree I did all those years ago – the creative use of language, and the study of culture, subcultures, human connection and why we seek those tribes. It’s the endless fascination I have for why people are who they are, how we communicate, what drives us, and why some connections are so intense and others are so alien. Looking back, it makes sense that this is what I studied – because it’s what I’ve always studied. The pattern I’ve had, since childhood, of observing the people around me, and trying to understand why I felt so different. Why things that were overwhelmingly difficult or confusing for me seemed to come so easily to everyone else. Why I truly believed that I was a changeling; a fae child, swapped out for the real human girl, that never got handed the rule book for “how to be a normal person”.
(And if you’re looking for a copywriter who is passionate about people and the reasons we sell or buy the things we do, or you’d like social media training for your organisation / employees, visit my business page Eliza Do Lots)
Back to TikTok: because I’ve now spent two decades working in social media and communications I can say with all honesty that their algorythm is by far the best I’ve ever seen. I’m sure there are some…unsavoury reasons for this, behind the scenes, and that there will be information in years to come about the way they mine data and personal information via their platform – but I can also see why people are so attached to the app. To the community they find there, to the network and connection they build, and the very specifically, tailored feed that the app gives you as you interact.
Any platform ‘listens’ to what you like, and feeds you more of the same. The more you engage with any social media platform or the internet as a whole, the more your behaviours and patterns are shaping the content you are seeing. This comes with good and bad outcomes – but for now I’ll look at the good…
How often have you heard someone joke that TikTok diagnosed their ADHD, or that TikTok made them realise they were queer? It’s only half a joke, because fundamentally, all algorythms are psychology. All are rooted in what you engage with, what you like, what will keep you engaged and active on the platform – so it’s in their favour to feed you more of what you engage with (even if you are, initially, doing so unconsciously) and this shapes the content you’ll see, the creators you’ll see, the themes you get most often in your timelines.
For me, I was seeing an enormous amount of videos from neurodivergent creators (women, especially) who were speaking about their lived experiences, and about the way they realised that they were neurodivergent, the traits, behaviours and challenges they faced – and every day I was learning more, understanding more, and recognising myself in those stories…(I still get these, and a lot of videos from queer women who came out as bi or gay later in life, but that’s never been news to anyone who knows me either…)
Late one night I typed “ADHD in women” into my phone and scrolled for hours through information about…me. I found a questionnaire that, though not diagnostic alone, could indicate whether it’s worth seeking a diagnosis – and got a resounding “yes lady, you’re VIOLENTLY ADHD” – and the next day I called my GP and asked for a referral. It took 18 months (which is quick by most people’s experiences with the NHS) and I left that assessment with a diagnosis of combined type ADHD and a prescription for Elvanse.
When I posted (on TikTok, and on my private Facebook) about the diagnosis I mostly got comments along the lines of “…no shit…” and “this is the least surprising information since information began”. I vividly remember speaking to my cousin Chloe (who is more like a sister than a cousin) and she was baffled, and said “wait, what do you mean you just got diagnosed…weren’t you already diagnosed? Because we all knew…we talk about it all the time…” – which was hilarious, and heartbreaking, all at once!
That heartbreak: that’s the biggest part of being diagnosed. The “all this time” and “if I’d known, things might have been different…” that hits you over and over. That hits you in so many ways. So many painful ways. So many moments of my life – my childhood, my education, my friendships, my relationships, my career – that could have been so different. So many mistakes, so many dangerous situations, so many crises that might have been avoided. So. Many. Mistakes. And so many times I’d failed, when I could have been someone else. I could have been better. Could have achieved more. Could be a better version of me.
It’s grief.
But it’s now been two years, in which I’ve processed a lot of that grief, and now I’m even more determined to go back to my studies. To help others. To give people the tools I was never given, the village I needed, and the place to turn when everything feels too big.
This post is already VAST, so that’s the end of today’s writing – I have to go and pick my kids up from my now ex husband (one of those ‘learning the hard way’ situations!) and I know my brain will fizz the entire drive with things I wish I’d included here – but this is unedited, stream of consciousness writing – and I know that I’ve got plenty more to say.
For now, thank you for reading, and if you regognise yourself in any of my story, or are questioning if you might also be neurodivergent, get in touch: I can point you to the resources I used in my own assessments, or just be there to listen.
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