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

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.

Parents
  • 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.

  • Thanks for responding and please don't worry about reactions based on my experience. Technically, no one has been negative in their responses to me after my diagnosis. The problem for me has been that I was looking for an answer regarding my behaviours and feelings (which I did get, so all cool there) and anticipated telling close friends and them being understanding and saying "ah, that's why you do x, or find y difficult). Instead I got "no you're not", "everyone's a bit autistic" or nothing / no acknowledgement.

    I thought for the times that I might have been seen as being anti-social, moody or difficult, they may now reassess and understand that I was trying my best but finding expected social interactions difficult and stressful.

    School was difficult for me too, in the way you've said. I thought someone was a friend, but years later looking back realise that they weren't really. I kept to myself all the time and think I might have been bullied, but didn't understand it at the time.

    I'm glad it's getting easier for you and I think it's a huge bonus to have a diagnosis earlier in life for your son. All the best!

Reply
  • Thanks for responding and please don't worry about reactions based on my experience. Technically, no one has been negative in their responses to me after my diagnosis. The problem for me has been that I was looking for an answer regarding my behaviours and feelings (which I did get, so all cool there) and anticipated telling close friends and them being understanding and saying "ah, that's why you do x, or find y difficult). Instead I got "no you're not", "everyone's a bit autistic" or nothing / no acknowledgement.

    I thought for the times that I might have been seen as being anti-social, moody or difficult, they may now reassess and understand that I was trying my best but finding expected social interactions difficult and stressful.

    School was difficult for me too, in the way you've said. I thought someone was a friend, but years later looking back realise that they weren't really. I kept to myself all the time and think I might have been bullied, but didn't understand it at the time.

    I'm glad it's getting easier for you and I think it's a huge bonus to have a diagnosis earlier in life for your son. All the best!

Children
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