Published on 12, July, 2020
Hi
I finally got my diagnosis, two years after asking my GP - quite a short wait I know, I was lucky that I am in the catchment area for the Maudsley! But I found out after I told family that they "always thought there was something wrong" and I feel like my parents didnt do enough, didnt protect me enough, i'm angry! My sister and brother don't seem to care, we aren't a close family..
When I read my report (which obviously involved a long talk with my informant, which was my mum) I cried and cried. I was gutted to read about this lonely five year old, who wanted to join in but didn't know how, who wanted friends, but couldn't make them. Im still feeling very alone and upset by reading these things. I feel invisible really. I've felt like that for a long time. I have no friends really (am in my 30s) and would like some..
I have never had much of a career, left one recently because the stress of it was enough. I whistleblow when I see the need so employers don't like that. I just feel lost, chaotic and alone even though I have a supportive partner.
Does anyone know of any groups where people can meet up in the London area?
Thank you for any advice, even any replies.
I was diagnosed recently after 50 perplexing years.
Regarding anger:
I spent a very short time in shock/grief/anger at the unfairness of it all.
However as I memory-walked through some of the many traumatic events in my life, I was actually really pleased to understand why I behaved like I did in the circumstances. Almost 2 years later I'm still havingas I remember long forgotten incidents and see them in a new (more forgiving) light.
This has given me courage to re-align my life to suit ME rather than lose myself trying to fit into a neuro-typical lifestyle.
I humbly suggest stop looking back in anger and instead look back with compassion for yourself and family & see what you can learn to improve your circumstance going forward.
Regarding friends:
NB: The following is very much about my undiagnosed experience and what worked for me - I am not pretending it's the best or most sensible approach.
Socialising has always been a huge effort for me, but it always seemed important to the neuro-typicals in my life (fellow students, flatmates, work colleagues, lovers & wife) so I put up with it. I also got to try new things that I would not have chosen to do by myself.
I have exactly 2 close friends... I would not have become friends with either of them if I had not put significant effort in to socialising. You need to meet a lot of people to find the few who you really click with (perhaps it's different nowadays with social media etc., but that's not my thing).
One of these friends must be on some sort of spectrum but is willfully undiagnosed - I find he is the easiest person for me to interact with. The other is neuro-typical and takes more effort to interact with (but still very much worth it).
Here is how I coped...
Reducing uncertainty
I do NOT like surprises, so I try to research and plan social events where possible:
Masking
My diagnosis and subsequent soul-searching reavealed that I learned how to get very good at masking, and I use this as a tool to function when out in public and enjoy warm (if superficial) interactions with people at large. This 'light' masking is relatively easy for me - good manners alone covers most situations.
Masking also gave me the ability to attend social gatherings (eg: work social events, picnics with flatmates etc). This intense masking takes much more practise, since you have to concentrate on so many things (that neuro-typicals do subconsciously)...
Socialising often has situational challenges:
My wife was initially horrified when I discussed that I mask to certain extent even with her - "you've been lying about yourself to me the whole time". I don't consider it like that - it's more like the padded bra she wears, or a prosthetic arm - it's just a tool I use to be able to function with other people.
I'd prefer not to mask, but for me it's kind of like having to put shoes on to go out - I'd rather go barefoot but shoes let me go more places.
BUT the whole process is exhausting, so it's really important I schedule down-time afterwards.
Chemical courage
Depending on the venue & people I'm with, I find beer &/or herbal cigarettes useful to relax, fit in & have something in common. Not recommended if you lack self-discipline - the health risks are significant.
Plan an escape route
I find I am much more relaxed when socialising if I know I can get the hell out of there at a moments notice in case I get overwhelmed or run out of steam.
When I was younger I would stay as long as I could bear, then "go to the toilet" and not come back - often sneaking out the back door. However this usually resulted in awkward conversations the next time we spoke.
Nowadays if I'm socialising with people I'm don't know well, I will prepare an excuse (early start, new meds making me tired etc.). If you don't want your excuse to be questioned too closely, make it about a bodily function "oh man the laxatives are finally kicking in - I best be getting home to my own bog".
With people who I know well enough I explain beforehand that I sometimes get anxious & overwhelmed so please don't worry if I have to step outside or leave early.
Going forward I also intend to (briefly) explain how my autism affects me in social situations (and so I may need to leave early).
If I'm going somewhere with my wife, she now knows she may have to leave early with me or take a taxi home herself (or stay the night etc).
In practice I've often found that I'm happy to stay for the whole event if I know I can leave early without fuss if I need to.
Alone-time (Perhaps not so relevant if you live alone, but important to me and included for completeness)
I've always been surrounded by people - school, uni, shared houses, office work etc. It's f*ing exhausting, and the only way I can truly relax and recover is to be by myself. I mean totally alone in the house by myself.
Even if my wife is upstairs asleep in bed, I find it impinges on my conciousness... say I'm hungry, I can't just go and eat... what if she wakes up soon? She'll probably want to have breakfast together. There are no eggs - perhaps I should go to the shop? It's raining - I'll need to put shoes on. etc.
So instead of munching on a peice of toast, I'm pondering a trip to the shop in the rain with a rumbling belly.
Phew - that was longer than anticipated!
Good luck on your journey.
Excellent post. I do relate a lot to what you say. I am also relieved as I also mask in front of my partner and understand the need to be alone in the house. Him being in the house also impinges on my consciousness. With me I like to talk to myself but can only do that if he's not in the house. I feel more relaxed with my daughter who is probably also autistic.