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Recently diagnosed, wondering if other people have the same experience?

StayingAnon

Hi. I completed the diagnosis process back in March and got diagnosed as being on the spectrum and was told I would be classed as having Asperger's (but it's not a formal diagnosis anymore).

I've always felt different, generally haven't fitted in and always felt separate to everyone else. I have a long list of behaviours and social difficulties which I think support the diagnosis. However, I wanted to see if other people have experienced the following ...?

Family and friends not recognising the diagnosis

Friends that I spoke to before the diagnosis, my parents, brother and sister all felt strongly that I was not Autistic / on the spectrum and have pretty much discounted it completely after the diagnosis.

I'm relieved (in a way) to have the diagnosis as it explains a lot for me, but most people around me don't seem to agree that I could have Asperger's. Most people, aside from a few, have either said "of course not", or not really bought into it.

Being okay as a child

As a child I didn't really make friends with other children and I feel that I went through my school life mostly keeping to myself. I always felt different and spent a lot of time playing by myself or reading. I did play outside with other kids, but I know I rarely connected with any apart from one or two.

I spoke to my parents today and their view is that I was a content child, just generally quiet. I didn't have meltdowns, I got on okay with my family and was pretty easy going.

I don't understand how I was relatively okay as a child, but have struggled a lot as an adult. Anyone else have that experience?

Social struggles getting harder with age

I seem to have struggled with communications more as an adult than as a kid. I have had a pretty good career in IT, but been socially awkward throughout. I've always found the social side quite hard most of the time, but I've gotten by. Early in my career I was regularly asked to speak louder and eye contact has always been difficult, but again, I've gotten by.

I struggle to talk to people all day and start shutting down in the afternoon if I've had to. I don't laugh at the bosses jokes, but know that I'm supposed to, like everyone else. I don't like work social events and avoid them at all costs (unless it's a small group who I feel close to). I regularly seem to upset or offend someone, but don't mean to. And on conference calls I either don't say enough, or I launch into long monologues and often forget that there are other people on the call (which is weird and a bit funny).

Is anyone else recognising behaviours pre or post diagnosis and then having issues with them becoming more impactful with age?

Thanks for taking the time to read this.

  • Hi...I'm am older adult just starting the process of assessment. My referral was agreed yesterday.

    Much of what you say about OK childhood mirrors my experience. I also only had a couple of good friends and learned to adapt to fit in with them. I think no-one was too bothered because I was good academically, and 30+ years ago it was not in anyone's radar.

    University onward was where things went haywire for me. The uncertainties of living away from home caused stress, plus the politics of the workplace and the like are things I just don't get. People don't seem to appreciate honesty and attention to inconvenient details.

    I'm hoping a diagnosis, if it eventually arrives, will lead to greater understanding and a better way of living.

    My wife, when I told her about being assessed, said she'd always though I had autistic traits. One of my oldest friends said she thought likewise: "High functioning autism" is how she put it.

  • Point 1. Most of my friends have been accepting, altho the fact we haven't elaborated after I've told them...feels a bit like they still don't gelieve me but I think it's lack of understanding.  A family member seems to be in denial but I think again it's lack of understanding. 

    Point 2. I was pretty much the same. I didn't cause any problems as a child and was aware I shoukd be good. Remember, AS affects everyone differently. Outward behaviours are how it shows but for some people including myself it's very much internal.

    Point 3. I'm not sure as haven't been around any new people for so long but this is going to change soon. I do feel more aware of how I am from an AS point of view when I'm socialising now though. For me I think it's more executive function difficulties as I get a bit older.

  • in reply to Ashy

    Just realised I made no sense with that first sentence, I’ve got a problem with the “autistic spectrum” language as it gives people license to interpret it however they like, it’s very NT. 

    I’m just conscious it seems I say the same thing every comment so tried to be concise and ended up saying nothing. 

  • in reply to LongSpoons

    Regardless of what people think in my opinion the purpose of a formally diagnosis is to be told: "yes, yes you are", and as a result having all those niggling questions and experiences in your head start to make sense.

    This is just me however.

  • I've got this all to come, it sounds like your experiencing my worst fears as far as the reaction goes, I've gone on about it enough today but it sounds like people have simply bumped you off the end of the spectrum. 

    For my family there are issues all over the place with undiagnosed autism going through generations so there may be a real need to plan the discussions carefully especially when it comes to nieces and nephews. 

    School was a complete nightmare with bullying and a complete lack of meaningful friends but I'd shut down so nobody care, just a kid who didn't try hard enough.

    Getting older though it seems to be getting easier I'm constantly learning more skills that improve my masking and using people to avoid issues where I know they will occur, part of my diagnosis story is to help my son so I'm doing a load of reflection about how I got where I am now and if there are any shortcuts that might help him.

  • in reply to StayingAnon

    I hope it puts you at ease having soo many questions answered <3, I too have had people say "But you don't seem autistic" and I have basically just been like: what do I respond to that? lol

    I will say one thing though: the one thing that hit me the hardest with accepting my autism was realising why I had such issues with interoception, like not feeling hungry or thirsty or the need to use the toilet until they are all extreme, I presumed it was normal to just have to guess these feelings. same goes for my sensitivity to light and sound, which caused me to always stay away from the school yard's and diners.

  • you do sound a very classical high functioning autistic person. 

    yes i found the social side became worse with age ----- but i decided to fight it such a speak and now i have improved in the social area. 

    I am in IT as well and find using Teams ( Zoom ) makes me very self conscious so I tend to have the camera off if  I can

  • in reply to Ashy
    Ashy said:
    speaks volumes towards the skills you have gained to mask it even if its subconscious (very common in my experience)

    Thanks Ashy - everything you've said is great and it's good to hear your experiences too. It's quite supporting what you've said above as that is pretty much exactly what was said to me by the team who did my diagnosis. Their view was that I had managed to adapt and mask from a young age and learned coping skills that enabled me to get by relatively unhindered.

    I'm still coming to terms with that. It's like I made everything seem easy when I was actually finding it hard. I got to a point where the hardness was breaking me, which is why I sought the diagnosis.

  • StayingAnon said:
    Family and friends not recognising the diagnosis

    Sorry to hear that, I had the same sense of relief realising I was not a "Messed up individual" however my family had the opposite reaction, they tried to milk it, make me seem much worse than I am, it was awkward to put it light.

    StayingAnon said:
    Being okay as a child

    I was much worse as a child, I would constantly cause issues all through primary school, I ended up being given "Special" privileges so I wouldn't cause issues, it was never perfect since I was just seen as a problem child who didn't like other children and didn't care about school at all. truth is I loved learning, I used to read lots in my own spare time, the school environment was the issue as it always made me feel irritable.

    StayingAnon said:
    Social struggles getting harder with age

    This I can absolute agree with, I admit I was crap at socialising as a kid and a teen, but I learnt to fake it, admittedly I ended up just copying other children which made me likeable but not actually me, I got to a point where I believed I was the personas I copied to point I couldn't understand why I didn't recognise myself, however as an adult, I am much more avoidant of social events and to be brutally honest even leaving the home, I just program most the time. I lost many jobs for various reasons such as being too honest and meltdowns etc, not that I enjoy working anyway except one job where I basically locked myself in a dark room (woo) and had to organise every single file in the building, it was extremely enjoyable but I ended up neglecting myself to focus the work to a unhealthy degree.

    All in all:

    Autism is indeed a spectrum, we all experience and manage it in different ways and the idea that your parent's just instantly presumed it was a false diagnosis speaks volumes towards the skills you have gained to mask it even if its subconscious (very common in my experience) and a lot of the time it can simply be people lack of understanding of what autism actually is; I have had many people ask me: "what does that mean?" and even I have struggled to put it into words.

    Stay sane.