Late diagnosis Impact: Neurodivergence

One day, you're just an adult failing at adulting, never quite making it, feeling like your head is constantly dipping just below the water level, and the next day, you have a label. ADHD. Autistic. Or even AuDHD. There may be some others thrown in, too. Dyslexia, dyscalculia, dyspraxia, alexithymia, Tourette’s, OCD, PDA, ARFID, SPD. [1] Some parts of the media and popular culture seem to think they're all just an excuse for failure or being a sh***y human being, but what does this all mean, and how does it really impact us?

As to the meaning, all it really means is that our brains are wired differently. Perhaps we needed to be taught differently and weren't, so we may have failed or not achieved what we’d hoped. We and those around us did not recognise fully who we were, and so our needs were not met, and we experienced overload, overwhelm, stress, anxiety or depression at far higher levels than our neurotypical peers. Sensory overload or emotional dysregulation are often the big things – with many people described as too much, not enough, too emotional, too unemotional, flaky, unreliable, too rigid, too inflexible, lacking in empathy, blunt or rude.

Among these, there are sometimes positive descriptions of highly empathic, strong sense of justice, creative, free thinker, lateral thinker, visionary, or we may pick up things that others don’t, which make us amazing at pattern spotting or jobs like proofreading, research, or therapy. If you're lucky, you landed in a profession or an environment that values your skills and supports your needs. If you're unlucky, you ended up feeling like you’re swimming against the tide, or generally unfulfilled, like you never really met your potential; or worst case, with an addiction (often due to self-medicating) or in prison – some figures suggesting that as much as half of the prison population [2] are undiagnosed neurodivergent in some way.

Either way, when we understand what these labels mean, we realise we were not who we thought, and had we known, and had those around us known, life could have been very different, and more specifically, a hell of a lot easier.

When we realise this, we begin to grieve for what could have been, or for what never was and may never be. We may feel in denial about our diagnoses, angry, or bereft, experiencing feelings of loss, grief, sadness, disbelief – how is this possible, how did they all miss it, how did I miss it? It can take a long time and certainly a lot of emotional processing effort to come to acceptance and to find a new way forward.

Of course, it’s possible that some ND people sail through their lives without needing a diagnosis, which absolutely happens. There may also be ND folk who do need a diagnosis and sail through the stages of their diagnoses without any issues, but I've not yet met those people, neither in my personal life nor as a therapist.

I live in a wholly ND community personally and professionally – by chance one could say – but I've noticed that for many of us, once we know who we are and learn to love who we are, then it is like leaving the old world behind, and entering a new one inhabited by mostly, if not wholly, ND folk. We begin to unmask, and while this process can be challenging and may lose us friends or relationships, it can also be extremely liberating, freeing, like a huge weight has been dropped. We have to learn to navigate the world differently, become aware of our needs, and learn how to get these needs met. As we begin this process of unmasking and reconnecting with ourselves, we can start to connect with others from a place of knowing our true selves, leading to more fulfilling and stronger relationships, and we start to see how many of those around us may also be undiagnosed ND.

While for some people therapy is what leads to their diagnoses, as they learn to know themselves better, for others, the therapy is needed post-diagnosis, as they find they need a little extra support to cope with the aftermath and what comes next.

References

1. OCD – obsessive compulsive disorder, PDA – pathological demand avoidance, ARFID – avoidant/restrictive food intake disorder , SPD – sensory processing disorder.
2. Wainwright, L., James., Powell., C. (2024) Neurodivergence, specifically ADHD, in prison – a conversation. Prison Service Journal, Issue 272 (https://www.crimeandjustice.org.uk/sites/default/files/PSJ%20272%2C%20Neurodivergence.pdf)