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Getting a diagnosis kinda unlocked something I think

Taken2Heart

So I got my diagnosis over a month ago.

I'm currently off work with work related stress and currently had early concilliation (I got my certificate to go to tribunal and a solicitor is drafting my et1 form). It's for disability discrimination and continuing course of conduct among a litany of other failures. But it isn't about that...

I grew up where I never fit in. I can't count now how many memories I have that hurt or crushed me. You could say there's a great deal of trauma there. 

Getting a diagnosis, as I process it, did a number of things. Firstly I gave up on myself. Not to the darkest corners of my mind but more that whatever load I was carrying - it meant I could simply stop. And I did. I didn't know what days we were in, I stopped looking after myself and I just stopped functioning. 

Because those memories came back - were talking childhood, college, friendships long gone. All roiled into also my work situation 

Others would say I'm licking my wounds but really I think I was simply angry. Had anyone known earlier alot of the issues would never have happened. But the worst part was - so many people past and present simply thought it was ok to treat someone so poorly who was trying to fit in and that, frankly, hits the hardest. I have detested bullies and strive to be the person I needed growing up.

I've not picked up my mental 'sword' yet. I haven't dusted off my jacket and walked out of my proverbial personal hell. But it gave me some clarity. 

The more I read up on what I am all about (divergent) I realise it's starts to become a roadmap to how people will react to me. And being the stubborn person I can be.. that roadmap will have only one useful thing - not for me to shrink or hold back. It's telling me that I don't fit in that box or need to walk into a room of naysayers. That's how I feel currently anyways.

I am allowed to protect my peace.

I am tired. Angry. And somehow little by little a bit of a spark is happening. I have nothing to owe and (hidden) social rules work for the those who want to hide. Or isolate people who are different.

So yes, a diagnosis can help. It can also dismantle any illusion your world has fortified itself around you. It's not a cure all. But it's a start.  It's early days for me I think - too much to process. 

A quote I've recently seen I thought I'd share:  

"But here's the thing about people like her..

..They don't break like glass. They break like bone. They heal, they knit themselves back together, and they come back stronger than before. The scars are just part of the structure now."

  • Thank you for posting this Takentoheart.  I am in the very early stages of waiting for an assessment though I had an assessment for adhd and there are strong indicators of autism.  Later diagnosed, 50's.

    I am finding it all very difficult to accept.  For years I have struggled to find belonging and have experienced a lot of bullying and ostracising along the way.  It feels like I have constantly tried to fit in.  I am just about to undergo some emdr for the extent of abuse I have experienced particularly in my younger years.  It's there all the time. I have tried so hard to push myself through, to fit and what is more been driven to excel at things I couldn't possibly achieve.  When I achieved the golden educational standards I was encouraged to achieve,  I then couldn't get a job that matched these credentials.  Consequently, I have always felt like a failure. The perfectionist thing plays havoc and somehow I end up feeling like I've got to save the world when I can't save myself. People pleasing has always been a thing for me.  Perhaps as a way of acceptance.  Feeling accepted and accepting the self.  How do you get there?

    I'm concerned about the lack of support out there and consequently the expense of trying to get support.  It does feel very isolating.  I don't want to isolate but it feels difficult to find where I fit.  It explains why I often create mini worlds in my mind.  Favourite people, safe spaces detached from the rest of the world.  

    I feel overwhelmed, like you say too much to process. Too much to accept.  There is a huge sense of loss around all of this.  A grief I can't quite name.  

    I would be very interested to hear your thoughts along your journey takentoheart.  I like your quote.  I have a strong interest in poetry and writing so this is right up my street.

  • Hello, 

    Firstly, thankyou so much for writing of your experiences in such a meaningful and honest way. 

    I received my assessment not long ago and I can empathise with so much of what you have written. Naturally, as autism effects people in different ways, then my autism diagnosis is almost unique to me as yours is to you.  

    For instance, you said you are stubborn and so am I. Dig my heels in stubborn! In light of my assessment I think my stubbornness was always just a way of stopping whatever/whoever was upsetting my life. 

    Also, I note your anger, I do not think I am all that angry. I am mainly just sad sometimes at all the lost opportunities - and there been quite a few. However, I did survive and know what my past was all about. I have drawn a line in sand and started walking a new route; of my choosing.    

    I am sure one of the many benefits of this site is the opportunity for people to voice their experiences safely, without criticism but with support and understanding. 

    You have obviously a lot to deal with, particularly at the moment, but do I hope you will share your thoughts again. Great quote, by the way.

  • Oh gods - the memories! I had a catastrophic breakdown or burnout seven years ago and it brought back the childhood stuff. I didn't know I was autistic, then, and I was so angry with my parents. After too many years, I'd managed to overcome the anger, when a close friend suggested I check for autism and that dragged it all back again. And so much else - all my relationships, all the things I didn't understand and the memories of all the things that make me want to lock them up in a box where they can't still hurt as much as they did at the time.

    I found autism unlocked the feeling of shame I've been carrying my whole life: it's not my fault. I'm wearing a new pair of glasses that makes me realise how bad the old ones were and how much damage they were causing. Like the dear AuDHD friend who actually did find her new glasses were eye opening, I'm not yet used to this emotional adjustment and suspect it will be something I have to grow into.

    Congratulations on dropping the load. Good luck for your new life.  

  • Congratulations on your diagnosis!

    Following a diagnosis, it can be common for us to experience a lot of emotional dysregulation - I've linked to an article below about this.

    As for many others, my diagnosis turned out to be the start of a new journey of learning and adapting, rather than a conclusion with instant solutions.

    The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months, and others covering the kinds of support that you can access. You might find them helpful as a starting point:

    NAS - How you might feel after a diagnosis - includes perspectives from other autistic people

    NAS - Other advice covering post-diagnosis - including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    Therapy (or counselling) is often recommended after a diagnosis, as a follow up action for your GP to arrange. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS. My counselling, for example, focused on how my experiences of, and late diagnosis of, autism have impacted me.

    Before arranging anything, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

    The Autistic Survival Guide to Therapy

    Finally, I'll just mention a couple of books that I and others have found helpful early on in our post-diagnosis journeys:

    Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

    How to Be Autistic (free download currently available via this page)

  • Congratulations on getting your diagnosis. I'm waiting for my assessment, but learning about autism and seeing, how it fits my life experience gave me the possibility to analyse more and understand more. Now im tired of everything I've went through and also have terrible traumas. I ignore people telling me "just get over it". I need time. So do you.