The Deep Tiredness of a Later in Life Diagnosis
And how taking heed of it is the way to a more authentic and aligned life
The fallout of a late diagnosis of autism then ADHD was not due to this new information about myself but due to not knowing it for many years. Decades of living with an unexplained self has made my life much harder than it needed to be and it’s taking its toll in middle age.
Available “supports” for neurodivergent, particularly autistic people target the neurodivergence itself, treating it as a deficit to be overcome in the name of “capacity building”. But this is the opposite of what we need as late-diagnosed adults.
We don’t need to try and overcome our neurodivergence because that’s what we’ve been doing all our lives; hiding ourselves to perform whatever version of normal we could muster. We need support to heal from what we have endured and to build lives that align with our neurodivergent needs.
Developing coping mechanisms as we move through adulthood doesn’t make our lives easier. It might make them more functional from an external perspective, but we absorb the additional effort invisibly and silently. We’re forced to inhabit lives that aren’t an authentic reflection of ourselves because we don’t know there’s an alternative.
I’ve written about the rage that comes with not having your needs met, before diagnosis and beyond. Alongside my rage, there is profound tiredness.
I was diagnosed autistic at 48 then ADHD at 50 (there’s a whole other discussion around why separate diagnoses are more common). I was moving through middle age and unbeknownst to me, perimenopause. I was also dealing with the terminal illness and death of a parent, a pubescent child, relationship and employment instability and the resurgence of childhood trauma. I was also socially isolated and lacking a support network.
These are typical life events for someone at that stage of life and they don’t make me special. But they do explode the persistent myth that neurodivergence is less of an issue the older you get.
The impact of fluctuating hormones wreaks havoc on just about every bodily system and it hits neurodivergent women even harder. In the last few years, my sensory sensitivities have gone through the roof and my executive functioning has taken a battering.
Somewhere in there are layers of cumulative stress from decades of trying to meet neurotypical expectations with undiagnosed neurodivergence in every area of my life.
The layers of effort required to perform everyday tasks that come naturally to neurotypical people. The thankless work in explaining that despite your considerable strengths you can’t do apparently simple things when you don’t yet understand why.
The additional processing sensory and cognitive demands of operating in environments that are geared to neurotypical brains and absorbing the friction of trying to adapt to them. Longing to escape the too-muchness of the modern world that brandishes its sharp edges at every turn.
The hypervigilant nervous system that comes with an ever-present fear of being in the world and being caught out for some unspecified infringement. Never being able to settle into a core sense of safety because it doesn’t feel safe to be yourself. Whatever that is.
Constantly digging deeper to work harder only to fall short or to maintain the external appearance of coping while falling apart internally. Striving to meet the milestones that you see happening for other people as your life trajectory seems to be veering further and further off course.
The trauma wounds of relationships and friendships that ended badly or didn’t get off the ground at all and over time reinforced the belief that there was something fundamentally wrong with you.
The unspoken shame of not measuring up and the belief that you are unworthy because you have no way of understanding your difference. Having to constantly top up you self-belief because without a reservoir to draw on, it’s only as good as your last achievement.
The overwhelm, meltdowns, shut downs and cycles of burnout either suffered in silence or with judgment loaded about your character. Then asking for help only to be told everything is fine and to suck it up.
It’s a lot. And if it hasn’t caught up with you as you head into middle age, a reckoning is probably not far off.
Identifying your neurodivergence as an adult involves deep inner transformation. But translating it to your life in tangible ways is down to you, and that just means more hard work.
Trying to bridge the gap between my neurodivergent reality and a world that hasn’t caught up yet is a whole other set of mental and emotional labor. I’m grateful for opportunities to articulate my experience and raise awareness. But having to step into self-advocacy mode every time I want to complete a basic consumer transaction is tiring. My energy is finite and I have to be intentional about how I ration it.
As long as the environments, systems and processes I move within can’t flex to accommodate a broader range of needs, my best option is to limit my engagement with them as far as I can. I have chosen to make my world smaller.
There have been trade-offs for sure. But living fully and intentionally in a world of my own making is much better than trying to stretch myself across one that serves someone else’s imperatives.
I am clearer about what is important to me and where I want to put my energy. But the reality of this stage of my life is that my cognitive resources are strained and I don’t have the mental agility I had a couple of decades ago. It’s harder to transition between tasks and to access the part of my brain used for higher order thinking and creativity. I have to safeguard my precious capacity by pushing back against so many things in life that encroach on it and burn up my mental energy.
I don’t refer to my limitations any more because the limitations aren’t in me but in a world that fails to meet me halfway to lighten the load. So I exercise the agency I have to shape a life that is sustainable because it’s aligned with my needs.
I can’t meet the demands required to function in a workplace so I am self-employed. I can’t tolerate noisy social environments so I rely on a small number of rich and meaningful relationships and one-on-one interactions.
My hand has been forced because I simply don’t have the capacity to do these things any more. But in releasing these expectations on myself I have let go of internalised ableism and the harsh self judgement of comparing myself with others and measuring myself by neurotypical benchmarks of success and human value.
The profound tiredness doesn’t go away when you stop actively doing things. At times I’ve felt weighed down by heaviness and inertia. Paradoxically this happens in times of calm and rest. While I tell myself that I should be utilising this time productively, it feels like an unassailable force is stopping me in my tracks.
What I’ve realised is that absence of activity is not the absence of effort. These are the times when the unconscious part of me is working hard to process, grieve, repair and heal; to unravel, unlearn and let go.
Also paradoxically, surrendering to this process brings a new lightness. When the story you’ve been telling yourself is exposed as a fiction, everything that has been holding it up falls away.
Healing is not linear but a gradual spiralling towards self-understanding and acceptance. The work is constant and progress slow but the rewards are immeasurable. The conscious awareness that negative self-beliefs no longer have the grip on me that they once did is one of the most joyous achievements of my life. And it has been truly liberating to realise that nothing can happen to me that is as bad as being afraid of life and robbed of my power to live it how I want.
It has taken a lot of work to carve out a space for myself where healing can occur. Tiredness has seeped into the space created by self-acceptance and self-compassion. It has given me permission to stop living a life not aligned with who I am and maintaining an acceptable version of myself.
For the first time I can stop resisting, fully exhale and settle into being myself. And if that means being consumed by tiredness while body and mind re-set, I will take it.
Thank you for writing this. I was struck by your observation that neurodiversity isn’t as prominent later in life (as others see it). I’m a therapist who was also diagnosed later in life and so many of my patients have a message they keep telling themselves, “I should have outgrown this.” I grew up in NYC and lived there for 21 years. It was always loud and the masking was exhausting. I never “got used to it.” It was only when I was able to move to a place that felt safer and listen to myself that I was able to heal.
That is beautiful feedback RG, thank you. Sounds like you are truly in the thick of it. But as you say, we are not alone.