Published on 12, July, 2020
I'm in the final stages of receiving my autism diagnosis after what feels like a life of constant struggle. The clinicians were happy to confirm their opinion of a diagnosis of ASD (GP referral, right to choose, zoom meetings). Now it goes back to my GP and my workplace and I'm left not knowing where to go next.
In the 90s I was an obsessive child who struggled with making friends and couldn't by any means take a joke - but that was about all that was considered at the time. "Autistic" seemed like a scary word that one kid had in the whole area.
Then when I was 10 my dad died at home and my obsessive behaviours, social difficulties and apparent lack of sense of humour declined further until my first period of severe depression at 15/16. School was bullying and not fitting in until I learned to mask, which I did really effectively. My sudden ability to be this person who wasn't "weird" was incredible and so carried on. Through all this underneath I struggled with my gender, my identity, negative self image and much more. Suicidal ideation became regular, violent outbursts were commonplace and I was seen by doctor after doctor, sent to therapy, put on every SSRI and mood stabiliser known to man, yet the cycle continued. Why didn't they consider ASD????
I had a small handful of relationships, all of which I began whilst masking and which subsequently fell to pieces. Self hatred was my thing, self blame and guilt was all I knew.
I addressed my gender confusion by accessing GIC in 2020 but after a long difficult road, treatments (medication and therapy), I ended up questioning still. This led to the mother of all breakdowns on a short holiday with family. Then I requested a referral for ASD assessment.
An irony of all this is that from 22 until now I have worked as a support worker for those with learning disabilities and autism, and I have excelled at it. It's also stripped me of my wellbeing many times due to giving too much but has allowed me to get a small property mortgaged and pay for my car.
For my entire teenage and adult life I've waited and worked, for it finally to click in to place where I could finally feel I belong on this planet and that I have a chance at a fulfilling life. My thoughts have been fixed on how that can be done in a neurotypical society around neurotypical people. I used alcohol and recreational drugs which temporarily helped me to feel attached to society but which quickly wore off and caused a host of other problems - I'm now completely sober.
Realising now that my brain is not wired that way, and being the reason I have been caught in this loop, was at first a relief but now I feel completely lost. I am grieving for the life I thought I might finally achieve but now know isn't possible. I'm in the midst of full burnout, I can barely move from my bed, I can't engage my brain, I can't socialise, eating seems a pointless task and I just want to feel better. All of the talking and appointments and thinking about the future has caused this burnout but I've not even got a positive idea to soften the blow.
I'm worrying about typing this all out and reaching out, I've never done this before but I can't cope with feeling so alone. Every time I go to post it, there's more i feel I should include.
Anyway, thank you for reading my story, I hope someone can relate
They're all things that seem crazy but on here you'll find everyone will relate and see them as normal traits and challenges we face.
As Uhane said, everyones experience of getting to understand things will be different, but you will find a way.
Post diagnosis the company I used gave 4 education sessions, these were really helpful. I think the materials are out there, I've seen some that were similar but better and more detailed since, posted recently by someone here, I think it's this https://ausometraining.com/wp-content/uploads/2024/05/Autistic-Adults-Welcome-Pack-Final-.pdf
I also tend to write down the things I struggle with, then talk about them (sometimes on here) or research autism info till I found out what they were, then you'll see how most issues aren't exactly what you thought and you'll find ways to deal with them.
For example, on the face of it sometimes I'll get extremely anxious and angry at a plan someone has made, instinct will make me attach that anger to the subject of the plan, maybe the place or people. The actual issue 99% of the time is the fact that something changed and I hadn't got autonomy.
Once you know the real reasons for your feelings it does make them less of an issue somehow, easier to diffuse too.
I was diagnosed 6 months ago and I've made huge progress towards feeling better, long way to go yet, but its getting easier and I'm finding I burnout less and enjoy life more already.
I also want to say that the "everything is wrong" feeling is horribly familiar.
Thank you. To be honest posting here highlighted just how terrifying I have found being "seen". I had visions of being ignored or dismissed - it's so good to prove those thoughts wrong.
There are no guide books for this. It is a journey of discovery and you will draw the map and write that guidebook to this strange new country as you traverse it! It is an adventure of self discovery. Embrace! Rejoice! You have us here to share with and bounce observations and questions off of. welcome.
Very grateful for this reply, thank you
You are very much not alone, I can relate to a lot of what you've said there, I'm sure lots of other people will too.
Now you have that diagnosis and the answers to why you feel different , it's the start of a journey to help yourself get through life in a less difficult way.
If you're burnt out, as out of step says, make sure you rest, keep yourself away from big triggers and recharge your battery, you'll feel far better equipped to tackle things once you have.
Burnout for me comes with a horrible feeling that everything is wrong, everything is pointless, that I can't cope, also get so paranoid and start to imagine all kinds of crazy things are true, all obviously negative things too.
Try and avoid believing these things, they're not real. Focus on rest, avoid getting into thought traps and rumination over things by staying present. Practice mindfulness, If you can talk to someone or even just write down your feelings, this helps get them out of your head.
It's normal to mourn the life you wish you could have had but now know you can't. But knowing how your mind works will help you find a way to get through life without it being as tough. Take your time, start off with rest, don't pressure yourself into finding the answers straight away.
How you feel now will not last forever, keep reminding yourself of that. Hope you feel better soon!
Thank you
BillieSkin said:and I just want to feel better
This was the bit which stuck out to me. It will come if you stop fighting against yourself. I'm not offering medical advice but if it's burnout, start with rest and recuperation. More than what you think you need. No expectation not even from yourself.
BillieSkin said: My thoughts have been fixed on how that can be done in a neurotypical society around neurotypical people
It is important to forge the right environment for oneself. This can be done, or at least a trade off to one which is predominantly more appropriate....nothing is ever perfect.
There is hope.