I am new to the forum and have what I hope will be the third and final part of my assessment at the end of next week.
I was teased by colleagues at work about being autistic about 10 years ago (I am now 45), I read up on Aspergers on Wikipedia and it was like reading my life story. I never took this any further though. My wife did some training last year on working with people with autism, and identified that I had many of the traits. We did a simple 10 question test (10/10), then a 50 question test (47/50), so knew if was something to investigate. I have had an initial mental health type assessment, the first part proper of the autism assessment, and have the next one next week.
My wife has been so supportive and so have my children (aged 11 and 8) who we felt we needed to tell about the assessment. However on speaking to my father and sister (my mum is sadly no longer with us), they (and I appreciate it may have been a shock), pretty much just didn't believe me. When I went through the questionnaire with my dad he pretty much just said no to every question, although when I explained how I felt on some of the questions, his replies were that he felt the same (but that he was not autistic), or that "loads of people feel that way". I tried to explain that it was the number of situations that I looked at in that way, and the links between them that pointed towards me being autistic.
So I am wondering in this period before the next assessment, how others felt before and after? I am hoping that getting the diagnosis will be a positive thing, and will explain a lot of the reasons I feel and act the way I do, but I have also read about people feeling a sort of grief that they only found out so late in life. I wouldn't change my situation for anything, but I can understand I may feel something when I look back at life perhaps being more difficult than it needed to be?
Would appreciate it anyone would take the time to help me through this period, with their own experiences, thanks.
Hi,I was newly diagnosed last December aged 52. I had suspected I was on the spectrum several years earlier but finally bit the bullet to get a diagnosis in Oct 2016. The process of getting the diagnosis was long and drawn out (although others have had much worse experiences than me). I had to wait 7 months from seeing my GP until the first 1 hour assessment of three, then another 4 months before the other two...then another 11 weeks before the diagnosis was sent to me in the post. The waiting was extremely stressful and autism unfriendly and my anxiety levels went thru the roof so much so that I sought out a private therapist with experience of ASD to help me get through that period. It was a bit of a stretch financially, I realise many couldn't afford this, but it was my only way through as there are no support services for autistic adults in my area at all...Staffordshire is a crap place for adult aspies unless you live in Stoke which is 40 miles away. I'd also say that informing people that they are autistic via the royal mail is cold & soulless not to mention insecure... they should tell you face to face in a humane way when you are prepared for for it, not at some random moment when the letter pops though your door!
Ranty bit over sorry!...so I've known my diagnosis now for 8 months. Initially I was over the moon, I finally had an answer to why I struggled to fit in, was bullied and told I was weird, years of anxiety and depression but also where my positives came from such as my musical and technical abilities, attention to detail and general logical approach etc etc. In those early weeks I was considering telling the whole world (well my 'friends' on Facebook) with a kind of 'this is me take it or leave it approach'. But I didn't partly as I didn't want to cause problems for my sons (aged 8 and 12) having been teased and bullied myself during my childhood (and beyond) and I didn't want the parents school pick up brigade's rumour mill going into overdrive either....hassle I can do without! So actually I only told 3 close friends (2 of which may also be on the spectrum) and my family. Outside of my immediate family, the response was either to ignore me or deny/poo-poo it. My Mum's sister flatly refused to acknowledge that Mum was likely to have been aspie too, she didn't like that at all! I'm pretty sure Dad was on the spectrum too but I'll probably never tell his family. Responses from non-family members however were much better, but how many more I'll tell I dont know yet?So once the initial euphoria of the diagnosis had past and the general disinterest/denial of my family had sunk in I became quite depressed and although much better than I was 4 months ago I am still trying to get my head around everything. I've come to the conclusion I have been mourning for the NT person I always wanted to be but never could be... I spent a lot of time (and money) trying to fix myself through various times in therapy, self help books etc etc.... BUT I had the wrong service manual! Glad I finally have the right one but all the years of bending out of shape and trying to re-wire myself have taken their toll. Part of me is 'aspie and proud' and wants to shout it from the rooftops but I'm starting to realise that most NTs neither understand nor care. It feels like I'm on a steep learning curve adjusting to my diagnosis and it aint gonna happen overnight.So I'd say be gentle on yourself, take things easy and don't rush into anything as you could be in for an emotional roller coaster but I truly believe that finally knowing after all these decades will be a positive thing for myself and hopefully for you too.
There might well be anxiety and denial from immediate family. I surmise that there may be doubt because they would have “known” if you were, or the stigma of a “label”, or just lack of awareness.. we know the term but not it’s impact.
I’m saving* for a private diagnosis, which is for my benefit in my journey of self understanding and some protection at work, I know it will not be accepted or acknowledged by others.
that innate urge to have validation and acceptance from others is a strong feeling which I am determined to shake off.
Chutzpah first, then assessment.
Hi, thanks for the reply, so have you had the NHS diagnosis already? My journey so far has been about 9 months, which seems pretty good
I'm confused...was this question directed to me or Ellie? I had my diagnosis back in December (first line of my post). Ellie is undiagnosed as far as I know.
Yes., she is currently pending
I was diagnosed 3 years ago, at the age of 56. Overwhelmingly, the first couple of years were positive. I had the validation I wanted. My life made sense to me at last. And I could tell the world about it. Reception has been mixed. Most people have been fine and accepting. My mother certainly embraced it and was always there for me, as she always had been. My brother shut down on it and distanced himself further. I've tried discussing it with him, but it's a waste of breath. Still... it's no big loss, really. He's small-minded, parochial, self-satisfied. Lost in his own way, perhaps.
For the last 6 or 8 months, things have turned a bit. I won't say the 'honeymoon period' is over because I think I'll work through things and return to positivity. But the tsunami wave hit me as I started to look at my life and see all the ways in which my condition could have limited me or held me back. I'm still not fully emotionally mature. My relationships have all been disasters, and I've lost one person in particular who was quite dear to me, but whose heart I broke because I couldn't handle the marriage. My education suffered because I found school so difficult - bullying, problems with focusing on lessons - and it took me many years to catch up. I've always generally thought of myself as between 10 and 15 years behind everyone else in so many ways. Although I'm clearly bright, and eventually managed to get a degree, I've generally stuck to low-wage and often very menial jobs, well below my potential capabilities. My main obsession, writing, has taken precedence over everything else - relationships, friendships, work - and I've made many sacrifices for it for hardly anything in return. Whatever talent I have with it is, I think, checked by a certain imaginative inflexibility. I don't really know how to stretch myself. My lack of proper understanding of the minutiae of human relationships and interactions may also be a limiting factor.
Throughout their lives, I stayed close to my parents - especially my mother, who was the most important human being on earth to me. She understood me like no one else. She was the only person I could go to. When she passed away last year, I felt cut adrift - which is pretty much how I've been since. This kind of coincides with the 'backlash'. So maybe my current negativity about my condition and my life in general is closely bound up with the grieving process. This staying close to them, too, has meant making other sacrifices, such as emigrating. I've pretty much stayed put for most of my life - in a comfort zone that seems to be becoming increasingly uncomfortable in other ways. I needed to be close to the main source of emotional and psychological support. Now it's not there, I feel sometimes like I've used my life up for no good reason. Within its limits, I've enjoyed it. But there were so, so many other things out there all those years, waiting for me. Great opportunities - and I turned them down. I try hard not to live with regrets, but - especially in the light of what my diagnosis revealed to me - it isn't easy. Maybe a certain ignorance is bliss.
As I said, though... I'll work through it. It's all work in progress.
I've always generally thought of myself as between 10 and 15 years behind everyone else in so many ways.
Interesting.... I've always thought I was about 10 years behind everyone too!
Hi, it was to ElephantInTheRoom, sorry for the confusion
Thanks MartianTom, I lost my mother 8 years ago, and I did emigrate to NZ soon after, but came back a year later, I think in some ways as I couldn't handle the changes once I'd made them. To be honest, I'm still coming to terms with it, I still can't talk about it without getting upset, and this came up in one of my assessments, as I had to talk about childhood and explain she was no longer here. Lucklily, my wife has been very supportive, and likes me for who I am, she sees my traits as positives, that make me who I am, but sometimes I feel a bit sorry for myself if I'm honest, and I worry I'm not always "present" for her and the kids, as I don't necessarily understand their needs
I know people grow up faster now... but I look at people in the early 20s now and know they are much more savvy, switched-on and street-wise than I was at that age. Even now, I stumble over my naivety when I'm around younger people. Emotional maturity is another factor. In any relationship, my emotions go to extremes. I get hyper-anxious when I'm away from the person - so much so that I find it hard to function. I'm deeply insecure that way.