Undiagnosed but pretty sure

Hi everyone,

I'm Lester (not my real name), I'm 55 and live in the east of England.

Last week, for whatever reason, videos on autism popped up in my feed on Youtube. I didn't think I was autistic at the time but my nephew is and I really enjoyed the A-word on BBC, so I clicked on one to find out more. Then I clicked on another one and another one. The more I watched, the more I identified with what was being said. It was being said by autistic people who looked perfectly normal to me.

Slowly it dawned on me that I might be autistic. I don't have all of the traits but some of them bring out very strong emotions in me when described, in particular:

  • trouble with small talk
  • difficulty in building lasting friendships/relationships
  • not making a lot of eye contact in conversation

So at the age of 55 I found out that most people, when they see someone they know or just someone they want to talk to, they go up to them, use all the right body language and some nice words just come out of their mouths like magic, they don't have to think about it.

This doesn't happen for me. The same situation is like when you go on holiday somewhere that a foreign language is spoken, say Italy. You go to the restaurant for dinner but beforehand you've thought about what you're going to say. You've got the phrase for 'steak and chips please' perfectly practised in you head so that when the waiter looks at you with his notepad, you'll master the situation, which, of course you do. Then the inevitable happens. The waiter asks how you want your steak, you don't understand a word he's saying, your mind is a blank, you look a fool.

That's how small talk feels for me a lot of the time. Unless the conversation happens to land in the area of maths, chemistry or some other nerdy topic I'm into, I frequently draw a blank when trying to contribute.

The realisation process was a tough time for me last week but after the struggle of telling my wife on Friday (she was very supportive), I called the GP to try to get a diagnosis. They are doing phone consultations initially but I set out my traits to the doctor and thankfully he was convinced enough to send me for a diagnosis. It will be 4-6 weeks before I hear anything, so I'm in this period where I think I am but can't be sure.

If I am autistic though, it will explain a long list of things that have happened in my life. At times I've thought I was the guy in The Truman Show, where everybody else knows the big secret but the guy at the centre of it all isn't in on the joke.

That's about all I can say about myself for the moment but I'm going to be looking around the community boards here and learning as much as I can, it would be nice to make some friends.

Lester

  • Yes it didn't make much difference at the end of the day even though it was clear that I was an easy target and they had taken advantange of my poor empathy and understanding of online messages and taking them literally.

    I was antagonised by a female stalker for years who wouldn't leave me alone and also gave me her password and told me to go onto her account, but when I did I was charged with hacking and the disclosure of the password was disregarded as a defence.

    I was prepared to do anything to try and get out of it and the two psychiatric experts cost the taxpayers a couple of grand to produce reports so I had to try and fake it as much as I could to get the diagnosis

  • being autistic doesn't protect you against the law, especially civil cases

  • I'm not sure I just exagurated all the answers to get the diagnosis so I could try and get out of a court case. I still don't think questions can determine something which isn't a binary yes or no

  • Thats why they ask you to fill out the AQ and EQ questionnaire and perform the ADOS test during the assessment ?  

  • Hi, I believe there is no clear cut line between being on the spectrum or not. I consider myself as borderline and have came across a lot of people which I believe are the same after displaying a couple of traits. I think the other thing to note is that nowadays the increased use of technology has resulted in more people losing their social skills, as many ASD traits are related to social skills I think this is perhaps why autism appears to becoming more common

  • This sounds familiar??5 years ago my son was diagnosed with Aspergers through CAMS (NHS). Even then, it took me a while to wonder if I might have Aspergers.

    I only made the connection after watching the channel 4 "Are you Autistic" documentary and later on, getting generally more stressed and anxious with life and particularly work (which should be easing as you get older).

    I had been treated for Anxiety for decades and as it seemed to be getting worse as I got older, I went to my GP (I was 55 at the time)

    My GP said, that when we were younger, these Conditions were unheard of, and Aspergers could possibly explain why my anxiety was getting worse (for no apparent reason) while the medication had less effect. Turns out he was right, but he had to refer me to a private Psychiatrist as after 6 month's he couldn't find anyone, to look over the 8 pages of notes I took about my life history and my "quirks" as I put it. I did not think I had Aspergers but maybe some Anxiety Disorder and was completely surprised when the Psychiatrist said he was 95% sure I had Aspergers.

    He would have written a diagnosis letter there and then, but because I had issues at work, he said a formal assessment would carry more weight. I had this including an ADOS assessment. The GP visit started in November 2018 and wrote my notes for a second visit a few weeks later. I remember feeling very anxious in the waiting room, thinking that I was a fraud and wasting the GP's time - I nearly left!. I went back in February 2019, but he hadn't been able to find anyone to look at my notes to see if there was a problem worth investigating. So I had to go the Private route... £350 for a 1:45hr session with the Psychiatrist. £280 for an initial consultation with the Psychologist and £1500 for the full assessment. I think it was money well spent.

    And of course, initially after the diagnosis, you are filled with regret on how things might have been different if I could have been diagnosed as a child and received some therapy.

    Over the years I have "learned" to be sociable in 1:1 situations but struggle in larger gatherings-I just switch off basically. I often complain to our Aspergers son, that he really needs to make an effort to be more sociable!! - otherwise he will have a lonely life!

  • Hi Lester,

    I am a similar age and was diagnosed with high functioning autism this Jan (2020). The diagnosis was quite a surprise and is taking a time to come to terms with what is means and understand how it effects me? Before I started looking in detail I would not have said I was on the spectrum at least only a tiny bit. But now I know more details it is more obvious. I suggest getting a test is a good thing, it has helped me so I hope it works out the best for you.

    PS I am also a newbie here as this is in fact my first post.

    All the best

    PMc

  • i was working with my nephew one of his projects when  he took a shutdown because I was explaining too much.  His dad took him away. afteerwards I suddenly realised whats wrong I do that !    then it hit me i love working with him because I am just like him --- the obsession with train sets --- his models is like heaven to me 

    Bottom line : working with my autistic nephew helped me see traits I didnt even notice After my diagnosis fights at my primary school between my mum and the headmaster suddenly made sense. The reaction when I made it to grammar school suddenly made sense !

    I got the diagnosis last year so I am one year ahead of you !  I have 3 kids, a house,  and a dog. 

    my mum is autistic and doesnt know thats why she considered me perfectly normal and that strategy I believe worked really well for me because I did everything like a normal person. I have been in jobs where I now know autism has always been banned ! 

    The Truman show is one of my favorite films of all time because my reality is so different from other peoples so what is reality ?

    I am now into buddhism,mindfulness, Zen, and meditation. These have helped me quite a bit. I looked at the research and they indicated it helps about 60% of autistics in some way mainly pushing down the anxiety and depression