Part Two: There are lessons you learn, when you've waited your turn

#10 - I desperately wanted to fit in, to belong, to join the game but what if you don’t know the rules?

Today’s title may be a little less familiar than the last which is from The Fresh Prince of Bel Air. This one is from Life Turned Upside Down by Badly Drawn Boy - can’t say I love the song, nor will it make its way into my ‘On Repeat’ playlist but the lyrics are just right.

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Thanks for joining me for Part 2

If you’re a new subscriber to The Thought Library you can check out Part One here

Part One: This is a story all about how my life got flipped turned upside down

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⚠️ Content Warning: in this series, there will be some references of abuse, suicide and both mental and physical abuse, family dynamics and dysfunction and a number of things that have contributed to CPTSD. So if you need to hit pause or skip this article please do so.

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Down the Rabbit Hole

Now, when covid hit in 2020 and we all had to stay home, the world got quiet. Despite all the obvious devastation it caused, for me at least it was the first time in my life where I could stay home, not face a commute and the office (which was a toxic environment), the noise and expectations in the world and where I wasn’t expected to be anything but me. But who the hell am I?

Tell Me Why

I sourced a new therapist, now I seemed to have a little more head space (there were less input sources or as I call them channels, fighting each other), so I started to hear the channels and voices that had been suppressed, ignored and silenced for years and started questioning why, again, do I feel so broken. What is wrong with me?  

⚠️ I’ve had the privilege to access counselling and therapy since I was 16 when I took an overdose of paracetamol (although I took 90 it didn’t actually do anything - even today I seem to have a higher threshold for medication) as a cry for attention.

My mum was at the hospital with my sister, as previously mentioned this became a regular occurrence for a wide range of reasons, so I told a friend over MSN what i’d done, obviously being 15 at the time she voiced her concern to her mum (who worked in the NHS) and she called an ambulance for me. I was taken to the hospital and had blood tests along with all usual checks.

Once they’d found my mum and taken me to her, the first thing she said was:

‘Really!? Don’t you think i’ve got enough to deal with, without you doing anything?’

In that instant, it reinforced what I already knew and reminded me that my needs didn’t matter or at least weren’t as important and anything other than being ‘good’ and ‘quiet’ was just going to be inconvenient. 

The Warehouse

So was all this noise in my head, under my skin, just all the little t’s and big T’s and the early parentification.
Was it all the people pleasing and associated shame and guilt if I didn’t?
Was all this stuff in my head real? Could it change, could I change?
Why was I always tired, tired of everything and numb to everything…?

As time went on and therapy continued we tried to tap into how I actually felt, to create a space where I could hopefully connect to and feel the feelings. This always felt hard. It always felt like no matter how hard I tried something was still missing and there was still so much input consuming my mind.

All behind the loudest channel which was a relentless critical internal voice.

In my attempt to try and explain what was going on in my head to my therapist I revealed The Warehouse. The warehouse in my mind that has endless rows of cabinets and in those cabinets are index cards and reference points and scripts for what I need to do and say, what I should do and say, what I want to do but also every person and every situation I encounter or might encounter has a card or a cabinet and I have to maintain those and remember some more than others, especially the ones for people. (It’s exhausting just writing/reading that)

But there has been multiple times in my life where there were so many cabinets being created, opened, sorted, analysed that it all got too much and in those rabbit holes of searching and managing the only option that felt possible was to just make it all stop. ⚠️

Make it quiet.

Turn off all the channels, close all the doors to the warehouse and turn the lights off.

I kept burning out and then just starting the cycle all over again and I could never verbalise what was going on, what was happening inside.

Therapy and Brené

My therapist recommended Brené Brown’s ted talk, her Netflix special and her work, especially on emotions, vulnerability and shame.

I devoured every podcast, audio book, her website, resources and these, as well as any off shoots of her work and the guests she had on the Unlocking Us podcast of hers, I consumed constantly for about 18 months.

It helped. A little in some ways, a lot in others. I started to find I had, at least, a little more language in communicating what I was feeling (or trying to feel) and was always being very cognisant with.

But it just gave me another’s voice, another character and script… it still felt like i was playing at being ‘ok’, at healing and figuring all this shit out. But nothing really changed, felt better and nothing was ‘fixed’.

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This Is Research

I Will Find You + All The Knowledge GIFs for your entertainment

So ‘How do you solve a problem like Casper?’

I found HSP or Sensory-Processing Sensitivity (SPS, the trait’s ‘scientific’ term) amongst all this research - and as a personality trait it could be seen as something that was innate, just a difference and almost likened to how I have Blue Eyes; this fitted ok for a time but still didn’t feel right. It didn’t ‘fix anything’ or explain everything else.

Sarah Shotts over at Kindle Curiosity wrote better than I ever could about why Aron’s work, the HSP label and model doesn’t work and is harmful to Autistic people so i’ll share that here in order to convey why it didn’t feel right and why I no longer agree with HSP as a model.

I attributed my light sensitivity to my blue eyes. My sensory issues down to preferences or being ‘delicate’. My reactions to things were because I was just sensitive or I should actually just work harder to deal with it and I wasn’t ‘doing it right’. No matter how hard I tried.

I’d worked all my life to ‘fit in’ and when it all got too much the only strategy of coping I came up with was to make my world small, to retreat, to minimise exposure to all of those noises, smells, textures, feelings, situations or feel absolutely shite if I pushed through and just accepted that was the price to pay. 

To live is to suffer, to survive is to find some meaning in the suffering.
Friedrich Nietzsche

But all of this was often smothered with now dealing with living back in the proximity of my mother and all the stuff that came with that, including mental abuse, manipulation, insults and demands that even on an ‘ok day’ felt impossible to handle and not let bleed into everything I was desperately trying to untangle and figure out.

All of this only compounded the message that it was ‘all my fault’, that I wasn’t normal, I should do this, I should be able to do that, to respond in a ‘normal’ way…

I desperately wanted to, to fit in, to belong, to join the game but what if you don’t know the rules?

You’re trying to play the game and everyone else has been told the rules except you.

So you make your own rules as best you can but you always come last or if you do win you don’t understand how...I didn’t know the rules so how could I? It must of been a fluke... I'll try and understand for next time. I’ll be better next time. I can do all of this other stuff so that will be enough right?

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Now That’s What I Call Neurodivergence

Brain Fried is one of my photography pieces - you can find my photography on instagram @idly_casper

My therapist and I had pretty much covered the gamut of the human experience from childhood to the present but it was starting to feel like I was scrambling for what was next and I just felt numb in between the really low points.

I’d mentioned in the past that over the years people had made comments about my incessant need for why (they found it annoying) and that even strangers had commented they thought I might be autistic ‘oh but you made eye contact with me so maybe not’ or ‘but you can do XYZ’ and all our favourites (sarcasm) ‘but you have empathy so...’ hard eye roll 🙄 

A programme had recently come out on BBC about Christine McGuinness who along with her then husband Paddy, had shared that all 3 of their children were neurodivergent in Paddy and Christine McGuinness: Our Family and Autism. In this process of going through their assessments, learning what their needs are and how she and Paddy could support their children, Christine realised she may also be autistic.

The show documents her realisation, personal journey and ‘uncovers a hidden world of thousands of autistic women who, like her, have been ignored by science and society’.

My therapist said I should watch it as many of the things I had mentioned throughout various sessions were themes or points in the programme…

I went home and watched it immediately and within the first 5 minutes I was nodding and then I cried.

[Internal monologue at the time]

Could this be it? But she’s in the public eye, she’s doing X, Y, Z but she’s also experiencing all of these things and thoughts and… and… shit! Maybe… I am… autistic?

I quickly realised how ignorant I’d been and how much I’d been blinded by what the perception of autism was in films, TV and without all the additional context and depth to what neurodivergence actually is. Misdiagnosis and undiagnosed neurodivergence is huge, especially in women in large part due to all the research up to very recently in our history, being focused on young boys and primarily around behaviour. There was very little research done on the internal worlds that were vast and isolating for so many. 

I’d been wading through treacle searching for a fix, that with the right keyword or prompt, I could access pretty easily but until this point I had been deaf and blind to. 

Self regulation | Executive Functioning | Sensory Processing | Under and Over Stimulated | Rejection Sensitivity | Special Interests, | Interoception | Alexithymia and of course ADHD.

This was all suddenly a whole other language and lexicon that made so much sense and provided relief but… it also created so much grief all at once too.

The Assessment

I was privileged to be able to access a private assessment and diagnosis and on the 14th of June 2023 I was finally given an answer to so many of the questions I had.

You are autistic and highly likely to also have ADHD.

I returned for the ADHD assessment and in September of 2023 also received my Inattentive ADHD diagnosis.

‘Um, ok… Shit, um ok’

Initially I fought it. Like I’d somehow managed to trick these trained professionals and it can’t be right. I swung from ‘yeh and… it doesn’t change anything does it’ to ‘this changes everything’. From relief to grief in the same hour and back again.

The following few weeks after my autism diagnosis I cried, I felt waves of sadness, I felt frustrated, I felt even more isolated than i’d felt before and I also felt like a fraud. But in amongst all of that I also felt hope.

I actually felt hope that not only did I finally have an answer but there were actually going to be things, ways, that would enable me to exist without everything feeling SO HARD and even if it still felt hard it wouldn’t be MY fault. There was a reason. There was a path forward and I wasn’t alone. 

Healing Mix

The clusterfuck of having undiagnosed autism and ADHD tangled with childhood trauma (CPTSD) and parentification has meant every day has been a struggle my entire life.

Everything fought each other, suppressing the ability to recognise, to see outside of my internal world and even have the voice to say something doesn't feel right because... I didn’t have a voice. I didn’t know what that sounded like.

There’s a huge amount of vulnerability in speaking authentically even without neurodivergence. I didn’t feel like I could be a 'burden' or I would be selfish for asking for what I need… if i did in fact need anything at all. 

It all exacerbated and compensated each other.

So there has been grief, of no solution after searching for one. There is frustration that there is no ‘easy fix’ or even a fix at all… 

Self Identify, Self Compassion and Finding My Voice

So after all this I knew I needed to go through the process of figuring out who I am and how I can exist in this world in at least a little more comfort and at the very least actually be able to ask for accommodations to make it at least possible. 

I needed to try and untangle trauma and family dysfunction from my neurodivergence, which won’t ever be fully possible but at least the shame and guilt of many things can now be combated with compassion and a new lens of discovery where learning will help me see and find who I am and start viewing things as challenges and strengths VS good and bad.

Step into the greys a little more rather than being paralysed in the black and white.

For my ADHD assessment, I found all my school reports, from ages 4 to 15 and noticed frequent patterns of attention issues, high exam results but poor classroom and homework reports, but glowing personal reports about my ability to be comfortable around adults; be interested and interesting to talk to and having left a lasting effect on some teachers but this contradiction of me vs my work and me vs my behaviour was clear.

I could/can be charming and funny and engaging and be what I need to be and I always want and wanted to do what I can to impress, to prove I can and to distract from it all being too easy and too hard at the same time. But it couldn’t continue as it was so I began searching for balance.

I felt such huge sadness for the child that did all that and got me to where I was, where I am now, but is still very much hoping and asking for help now. This is the voice that needs to be heard, it’s the voice I need to give a mic too and just hope I can hear it.

‘To be nobody but yourself in a world which is doing its best day and night to make you like everybody else means to fight the hardest battle which any human being can fight and never stop fighting.’

E.E. Cummings

So this all bring us to just after I started my Substack - I have more answers but also more questions and there is no real ending. There’s no tidy bow or ‘and the moral of the story is’... but that’s ok… or it will be ok.

As with much of why I share here is because I want some or all of this to be useful and helpful. So even if one person feels less alone, feels heard or seen or is just like 'huh, so maybe I'm not actually the problem' then i'll take that one. Especially if it helps you have a little more compassion for yourself.

I don’t know what’s next, i’m figuring it out and sharing that here too but there’s always the Backstreet Boys to ensure I can at least get a few power grabs in every once in a while!

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As promised here is the playlist with many of the songs seen here and others that have played a part in my history.