Published on 12, July, 2020
So after a year of waiting I notice my phone ringing, a number I don't recognise, yet oddly I pick it up.... And I'm so glad I did! It was a cancelation for my initial assessment. Now less than 24 hours away. As soon as I put my phone down I realised what this meant. Instead of receiving a letter giving me 6 weeks notice, it's now tomorrow. It stressed me out so much I had to get into bed with the doors and curtains closed and my hood up..
I planned my journey (by car) on google maps, using street view to recognise places of significance - turning right at a set of lights for example. When I got there however, the road I wanted to go down, was no longer a road, damn you, Google! I ended up parking at a place I had not planned. And because of the traffic and weather, later than planned too. My head was a bit chaotic at a time I needed to be clam.
When I got to the clinic, however, I was pleasantly surprised. I got a glimpse into what the world could be like if it were built for autistic people. The signs directing me to the building were clear and precise. As were the signs on the door telling me to push it (even though it really looked like a pull door!), reception was clearly marked, the place was dimly lit, very quiet and there were zero odours. The receptionist gave me clear instructions and I knew what was expected of me and there was no idle chit chat.
The actual assessment was not a pleasant experience. Saying things out loud to a new person made me realise just how different I am, even though I'd been over those things a million times in my head.. I couldn't believe it wasn't picked up when I was younger.
Something weird happened, I had no mask - like I'd completely lost the ability. One worry I have is that I'd act that "normal", as I do everyday to fit in, that my autism would be missed. But in fact I'd never felt so autistic in my life. I don't know if anyone else shares this experience? I felt almost like a child, vulnerable and alone. It was like she could see straight through me, I couldn't relax at all, it was all very stressful. The lady who did the assessment was lovely by the way.
I was told my diagnostics session would be some time in June. With all that's going on in the world now, I'm concerned that, after getting lucky, I'm going to have another long wait before my journey finally concludes.... I'm getting quite good at waiting though, and happy to carry on waiting, we all need to do whatever it takes to see this pandemic through. There are far more people in need than myself right now. (Don't want this post to come across as selfish). Just thought I'd share my experience.
Indeed and there is little that you can do to improve the way you act, although I am quite good at masking in a 1:1, in that I can have a conversation (although in my head I am saying this is waste of time, while trying to look interested)
Well done for taking a cancellation. I wasn't that brave. I did however have my ASD and dyspraxia assessment over Skype this week which was surreal. I am both apparently - which I already knew but wanted confirming. Some books on autobiographical books on autism I like include Aspergirls and Pretending to be normal.
The closer I get to a diagnosis the more autistic I feel. Since discovering autism, it's impairments seem to have got worse. The more I learn, the more I'm aware of why I react the way I do. I'm more aware of certain situations. Whereas before, when I thought I was NT, I'd unconsciously mask and put up with it, totally unaware of the detriment to my mental health that was having...
Castle said:Other things I struggle with if my wife moves something of mine in the house and I cannot find it I can get stressed out and annoyed. Or the worse one is the in-laws calling around without ringing makes my blood boil as I have to get myself in the right frame of mind to deal with people. I hate things out of the blue.
haha yup, I know exactly what that feels like! I'm not coping very well with the current state of the country/world... So much disorder and changes. And why aren't people complying? The pictures of the tube this morning were disgraceful!
I'm looking forward to getting an answer, and I'm pretty sure I know what it'll be, but I'm very aware that a diagnosis isn't something magical. I'll still be me and I'll still have my problems... I just need clarity.
Good luck with your journey! It's actually been scheduled for next month! I'm not holding onto much hope that'll it'll go ahead though
I was the same, its great to have google street so that you can make a virtual drive :) The assessments were fine and was stimming loads (bending my fingers and tapping on the desk apparently) but it is the wait for the diagnosis that is the stressful part, thinking and over thinking about the two outcomes and what it will mean. Now that its over and I have my diagnosis of Autism level 1 (which was classified as Aspergers) I am more aware of noisey places and stim a lot more?
Good luck on your journey. Whether you are autistic or not it doesn't change who you are but more give you answers for why you have certain struggles, if that's the right word to use?
For me I always felt I had a slow brain at processing information whether it be someone giving me an instruction at work verbally or just not getting jokes and having to sit down and digest it so maybe I will get the joke.
Or another example when a customer will say something jokingly and I take it literally so walk off but then they say there joking with me. Sorry I'm not the best at describing situations but I guess you get where I'm coming from.
Other things I struggle with if my wife moves something of mine in the house and I cannot find it I can get stressed out and annoyed. Or the worse one is the in-laws calling around without ringing makes my blood boil as I have to get myself in the right frame of mind to deal with people. I hate things out of the blue.
Anyway my diagnosis last year was helpful but I can't say I've benefited too much from having my assesment although I am truly grateful after a long wait. It does give me a better understanding of myself though as to why I act the way I act in situations and my overall levels of anxiety why they can go up and down.
Like I say good luck with your assesment and may you find the answers you've been searching for.
Thanks for sharing your experience. I'm at the the stage where I'm still learning about autism, so I don't know if I really fit the bill but it's really helpful to hear these kind of stories.
Fingers crossed that your session isn't delayed by everything that's going on.