Why did you go for a diagnosis?

So many people, when I shared about my diagnosis, looked at me in utter disbelief and asked why I went for a diagnosis in the first place?

The clue was already there in my closest friendships. I was noticing a pattern. Most of my nearest and dearest friends were either already with a diagnosis, undergoing one, or suspected they were but didn't feel like they needed clinical proof for their differences.

My final nudge come roughly about a year ago, the experience is still a bit raw to write about, but something is whispering now at my 3am insomnia, 'just go for it'

We had just moved house, not just moved but went through the lengthy process of buying one, which is no small undertaking at the best of times. However, when you have a small child who needs you in so many ways, when your mental health is fragile for reasons you cannot even begin to fathom yet, and when you, for again reasons still left to completely untangle, feel like you had to juggle 90% on your own, because you pretend to be the confident one, or controlling? Who knows? Anyway, around May time we were in. So many emotions whirling in my head, gratitude for the opportunity to finally live in the beautiful countryside, exhaustion from forms and emails and phone calls and skip runs and old house painting, new house surveys, title deed bla bla bla an endless list of beautiful bureaucracy that somewhere in another life you apparently signed up for completing on your own...

Then you decide it would be a good idea to leave your much beloved community behind, where you've worked for the past six years on and off, the longest job you've ever held down, behind, because you can't justify driving 50 minutes there and back because what about the environment! And the voices of others still ringing in your head, 'when are you going to use that teaching diploma you studied for?' (Instead of reaching for something totally delightful like floristry or reflexology that might actually be good for your soul...) 

So for reasons beyond your own self nurturing you decide to go and work with teenagers with issues in a special school. This is no longer your beloved community. You feel like a sore thumb sticking out every day and teenagers can smell your fear and they make sure you know they know. I pushed myself for almost a whole school year to fit in. Only to be told time and time again, oh you're probably not making friends here because everyone else who came here already knew someone here. And you have mental health issues? 'Oh my mental health has always been great'. It has I thought? Well thanks for sharing that, so reassuring.

The days got harder to face, sometimes starting in tears in my kitchen, with no one to witness them, or at least acknowledge them. I'd give absolutely everything I had during those six hours, wiping my reserves completely dry for the one child I was living for, my own. The thought of a threeish month notice period not a reassuring prospect.

It's all a bit of a blur, but the proverbial rock bottom came one night when I tried to console my child in the middle of the night when he was upset and he just wanted his daddy at that moment. I was triggered beyond belief and I threw something and something fell off Christopher 's window sill. He then said to me the words that set the whole gruelling year to come in motion 

'Mummy you break everything!...'

My heart an aching mess, I lay on the grass looking up at the night sky sending out a silent cry for help to whoever was up there, out there, out anywhere. I would never contemplate ending my own life, but totally understood why some people would end up there in moments like these...

One thing led to another, I needed to actually physically reach out for help. Then came the phone calls, the visits, the meetings with Christopher, the advice, the two women sitting in my kitchen asking questions and looking at me with obvious pity in their eyes, not a clue or an inkling about the person inside this petrified and humiliated body...

I don't wish the experience on anybody, not my worst enemy, which I don't have. My spiritual practice doesn't allow me to look at anyone as other than myself. But some people I do have to try and forgive a lot harder than others. Most of all myself...

It was in the depths of these heart wrenching months that the questions of the possibility of  neurodiversity entered the already quite entangled mess of an equation. I thought what do I have to lose. So I filled in the questionnaire and the rest is so called history.

3.33 in the morning seems like a good time to stop writing, but I would like to share a quote before I go. I read it on the ceiling of Christchurch priory a few years ago. 

It went something like this 

Always be kind.

You never know what battles people are fighting inside.

In that year I so wished more people had looked up at that ceiling and taken those words in 🙏🙏🙏

 

This is ME autism to authenticity

 

The word autism back in the day used to just mean Rain Man to me with the moving performance of Dustin Hoffman. A few years later it was on the papers of students I supported in various settings. Little did I suspect at the time that one day it would be on my own NHS report.

It took me a mere 44 years of confusion, isolation, low self worth, eating disorders, communication struggles, loneliness and overstimulation to finally shed a tiny bit of light onto what may have contributed to a lot of that.

An old Hungarian magazine I used to read in my teens had a weekly article, 'I can't tell anyone, therefore I will tell everyone' I feel a bit like that. If I had a penny for every time I was told 'you think too much ', 'you overanalyze everything ', 'you're too sensitive ', 'you say thank you too often!' . The times I tried to be kind and offended and the times I tried to be real and still offended... I've reached a point of exasperation with trying to reach the outside world. Just about the only person who gets me is my five year old son. One difficult evening when I was feeling like a complete failure having been told I was always grumpy, I asked him if that's how he saw me. 

His reply warmed my heart. He said 'Mummy you're more kind than grumpy '. There's hope after all I thought. He still has the beautiful quality of seeing the good in the midst of challenges. After a really tense day at home I asked how his day was. He said 'mummy it was the best!' I said how? His reply was 'i loved going to the allotment with you and getting you muddy' He is my biggest gift in this life, my ray of light.

How does it feel to be someone who is apparently on the autistic spectrum? According to a loved one 'everyone has struggles'...

Does everyone feel physical pain when a door is slammed or an ambulance switches on their sirens next to you?

Does everyone hide in a room at parties and cries because all the small talk and noise and too many people in the room is just too much.

Does everyone have a hugely complex relationship with food swinging from yo-yo dieting to anorexia to bulimia to orthorexia to the point where you feel bad no matter what you put in your mouth...

Does everyone feel exhausted from seeing even their own family for too long?

Does everyone feel like they have nothing meaningful to say because the way they try to express themselves just never gets to the other side the way it is intended?

Does everyone feel physical pain when feeling frustrated and then feel the ocean of shame of not being able to regulate one's emotions at the 'tender' age of 44?

Does everyone wake up in the morning frantically looking for their Course in Miracles book to do the early morning meditation before the day throws anything at them afraid that without it they won't be able to cope?

Is it really true that everyone gets the same anxiety at cooking a complicated meal at work and then gets asked to do two more things and then the phone starts to ring and you can barely breathe at the thought of not being able to get through the list of jobs piling up?

I'd love to know if everyone does feel these things... It would make me feel so much less lonely.

For now I take one day at a time and connect deeply only with those who allow me to be totally authentic. I used to be a social butterfly. The numbers have hugely dwindled to about a handful of people if that, who REALLY get me, appreciate me, and allow me the space to be unapologetically ME.

I thank you if you are one of those. You mean the world to me.

If anyone resonates with any of this, I will be glad to know if I've caused you just a second of relief from feeling alone with it all. If anyone wants to reach out privately I'm here. I'm happy to listen to anyone who is ready to be real. I don't have time or energy for any pretending any more.

With so much love,

N🦋