Over the last month or so, I’ve found life totally overwhelming and felt a deep frustration with those around me who seem to expect me to just be getting on with things in the wake of this huge discovery I have just had, namely, that at age 30 I am now confidently Autistic and ADHD.
I am a lover of metaphors, despite much scientific literature pointing to metaphors being something Autistic people do not understand or use innately (let’s debunk that shall we…). I think this is because I find it difficult to name my emotions and feelings, and metaphors give me a language to do so. Again, the literature would say this is issues with interoception, i.e. a lack of awareness of the internal signals your body is sending. While I don’t doubt that I do deal with disregulated internal signalling, I think there are a few things going on beyond this:
Feeling so many things at once, driven by a busy AuDHD brain, would be difficult for anyone to describe so concisely.
A late diagnosis in particular is like being shown a reel of your life over and over, picking apart experiences with the new perspective you have on life. But at the same time, you’re dealing with the present and what this diagnosis means for you now, as well as what it might mean for you in future. You’re also a human dealing with the non-existential dealings of every day life…
So, how do I feel, you ask? Angry at the injustices of my life-so-far as an unidentified neurodivergent person, terrified of the burden I will carry for the rest of my life, full of grief for the younger versions of me who will never experience authentic acceptance, hungry, joyful for my validated understanding of myself and the empowerment I am discovering, overcome with existential dread as to why the world is so cruel to those with differences, tired because I didn’t sleep so well last night… you get the picture.
People stop listening quite quickly, aren’t up for hearing such honest answers so regularly, and like to think back to the “drama queen” trope that follows neurodivergent women around like a bad smell. Honestly communicating how I feel doesn’t help me access the supportive response I’m looking for, sadly.My experiences of specific emotions can differ to neurotypical experiences.
Relying on emotive language alone is unlikely to draw the understanding of others, compared to me drawing upon metaphors where there is some universal understanding of associated feelings and metaphors. In particular, emotive language for a neurodivergent person is usually heightened to an extent that can lead to being told they are “over-reacting”, and being dismissed quickly.
For example, if I explain that I am in a deep grief for my undiagnosed years, others don’t seem to understand that this is a grief similar to the loss of a loved one - it will take time, there will always be associated sadness, and there is a process of navigating the world where nothing will ever quite be the same for the loss you’ve suffered. I’m sure a neurotypical person who had just lost a loved one might even get quite angry at me for comparing the two experiences.I tell the truth, and it makes people feel uncomfortable.
For example, when I say that remaining in a corporate job will kill me, I can hear the eye rolls. But I am quite serious. The prevalence of cormorbid physical (including chronic) illness, mental illness, and suicide in neurodivergent people is far higher than for neurotypical people. I’ve lived enough life and worked long enough in this environment to know it makes me sick, and the inevitability of that is not nice to say or hear, but it is true.
But of course, being so raw is interpreted as blunt, dramatic, and/or over-the-top. Ironic really, that so often people will say those lost to suicide never asked for help, when I believe so many state how they are feeling for all to see, and others just don’t want to hear it, so don’t.
I can only interpret that neurotypical people believe there is an inherent inevitability about living the 9-to-5, when I believe there is a better alternative that doesn’t break our minds and bodies, and I have no shame in calling out systems that crush people.
**Disclaimer - I am not suicidal, and I think we need to stop being terrified of people speaking about the realities of feeling like the world is not made for you and therefore wanting to escape it. The world is literally not built for disabled, including neurodivergent, people. We are not mentally ill for wishing for a different reality, we are having a pretty rational response, actually.**
In the wake of my diagnoses/self-discovery, I’ve found it painfully difficult to explain how I feel to those in my life through every-day language; saying I’m “overwhelmed” gets boring, I flit between anger, grief, joy on an almost minute-by-minute basis. One emotion or experience at a time doesn’t capture what I’m feeling, and reinforces the feeling of being misunderstood at this particularly vulnerable time.
And so I’ve landed on a metaphor I’ve found really useful to explain the simultaneous overwhelm, mental and emotional chaos, and stuck-in-time feelings I’ve been experiencing. Those around me seem to be responsive to this explanation, and have even used it to frame their own thoughts, questions and advice towards me, which I too have found helpful: like we’re speaking a shared language. I wanted to share it here in case it’s useful to others:
On the day of my diagnostic assessments, I found myself at the epicentre of a scale 9 earthquake: “a great earthquake - can totally destroy communities at the epicentre”. The city that makes up my internal world has crumbled; there are a few structures that remain somewhat upright, but so much now is missing its outer facade, or sits in piles of rubble and requires careful deconstruction, clearing, and rebuilding. I am lucky to have survived, but there is insurmountable loss where I am.
This is how I feel about my diagnosis: it has shaken me to my core. I am having to revisit my whole life’s memories through a new perspective to better understand my experiences; I am questioning my values - were they ever my own, or were they the values of a society that suffocates people like me?; I am learning how to listen to my own body again - can I tell when I’m hungry vs physically tired or emotionally spent?
We all know that the effects of an earthquake last well beyond the moment it strikes: communities rebuild over years, families are forever living in grief for the people, places, homes, and memories that they have lost. It will be a careful process of rebuilding to come out from this shock, with more solid structures and a city that is built for purpose, with earthquake-proof foundations to carry it through what is likely to be an uncertain future. This is a post-diagnosis life for a late-diagnosed neurodivergent, it is a lifetime’s work to protect their ‘city’ by identifying their strengths and weaknesses, gaining a detailed understanding of their inner landscape, discovering coping strategies, building resilience, and processing the trauma.
Then there are those who live in neighbouring geographies. They felt a scale 5 earthquake: “slight damage to buildings and other structures.” These are my close family and friends; the buildings in their cities that are on a fault-line linked to my own may have seen some damage. They may need to put in considerable but short-term effort to support the shaken foundations, but they in themselves, and their city, continue on and largely get on with the way things were within a week or so.
This makes sense: these people are close enough to know something sizeable has occurred in my city, and our relationships are deep enough that they will feel a change and may even be required to expel effort to maintain our relationship, and/or to support me. They may significantly support the fund-raising efforts required to rebuild my city, that is, they may literally contribute to the hefty psychiatrist bill I received for my diagnostic assessments, or they may create the space for me to have some respite from my inner termoil in the form of a listening ear, or a home-cooked meal. But I am only one part of their life, and they must get up and go about their lives when they are not actively supporting me.
Finally, we have a scale 2 earthquake: “Usually not felt, but can be recorded”. These are acquaintances, colleagues, and strangers on the street. If they are told, then they know, but if they are not, they wouldn’t be any the wiser. They might see a headline “earthquake in Kent?!” but it will be nothing more than a quick thought, and they will not revisit it again, or feel any personal responsibility to support efforts towards the aftermath. They may notice that I am acting a little “off”, and this may indirectly impact them, but they won’t make the links beyond dismissing my absence as lazy, or my requests for inclusivity as the latest high-horse I’m on. These are the people who see me write about my experiences on social media and scroll onto the next post; they are my boss who is confused at me being stressed, “AGAIN?!”.
And this is all correct, and just, right? No one else is me, and therefore I wouldn’t expect them to feel scale 9. And just because I’m going through something, doesn’t mean Julie down the road should care, or even know. So where’s the difficulty in all of this? It’s in these people’s lack of understanding of, and therefore empathy for what it’s like to survive and live beyond a scale 9 earthquake, it’s the “AGAIN!?”.
Being expected to live through this huge event, and survive the rebuild, while having to immediately show up to the expectations of those who didn’t event feel it, is exhausting;
Going to work, while researching what about my previous foundations made them crumble in an earthquake, and how to build earthquake-proof foundations, is exhausting. I liken this to researching Autism and ADHD, re-visiting past experiences through this new lens, and the inner work I must do to ensure I can withstand future disturbances. This research, not to mention the implementation of what I discover, is a full-time job, on top of my existing full-time job. I’m exhausted, and I’m not sure those at scale 2 understand why; even those at scale 5 need me to keep reminding them.
The expectation to be able to advocate for myself for rebuild grants and access to aid while I’m just trying to get the utilities on and stable, is exhausting. I liken this to trying to maintain a household and the basics of a ‘normal’ life, like cooking meals and turning up to work. The official routes through which I can access support, clinically and through employment, require me to self-advocate; how can I possibly have the headspace to even understand what it is I need when I am using every bit of energy I have to be standing upright, paying my bills and feeding myself (and my household)? Those at scale 2 have no clue on this one, and scale 5 are confused unless they’ve seen me on a day-to-day basis and understand the chaos of living as an AuDHDer.
The idea that this is a finite and fix-able event, and a total lack of recognition for the trauma of not only the moments of the earthquake itself, but the rebuild and even the grief for my city before that moment, is exhausting. I liken this to the general lack of understanding that anyone who is not a late-diagnosed neurodivergent person would simply not understand: in the best cases this is the gap between learnt and lived-experiences and in the worst it is the chasm of systemic ignorance to neurodivergence sadly held by so many. This varies among those in scale 5 and 2. Unfortunately even in my closer circles there is fundamental lack of understanding, through no fault of their own.
The assumption that I now wish to return to my city as it was, rather than rebuild a more resilient, healthy, joyful city, is exhausting. I liken this to the assumption that I can now continue as I was, just with some additional knowledge. I know some neurodivergent people do feel this way, and that’s truly wonderful. But personally, as I said earlier, I know that if I carry on living the life I have built throughout my 20s - one where I have tried my damn hardest to succeed by normative scales of success - then I am unlikely to reap the benefits, or survive. I want to build a life that is authentic and joyful, one that supports me to be my best, and doesn’t feel like fighting a battle every day. This again seems hard for others to understand, particularly difficult for those living comparable lives to the one I am stating is not for me.
I’m sure I could come up with even more avenues through which to explore this metaphor, but for now I hope I’ve provided a useful tool to have conversations about why a late-diagnosis is so all-consuming and may cause disruptions to those in the scale 5 and 2 zones.