Feeling misunderstood

Hi everyone - I’ve just joined the community having been recently diagnosed with autism at the age of 55. (I’m male btw and never posted on a blog before so apologies if this is all a bit disorganised!)

I’m still trying to make sense of my diagnosis. The main element I’m hung up on is the 12 score which I think means my autism is mild / high functioning but that’s not really been explained to me.

Now that I’ve had my diagnosis all my past experiences do seem to make more sense but I guess I still feel misunderstood - it seems no-one really wants to hear how I’m feeling or is showing me much empathy for what, after all, is a pretty significant life event.  I don’t want a shoulder to cry on as such but would love to know of support groups (either local or online) that would give me a chance to share my thoughts and provide some practical tips for living with this level of autism..

thank you in advance for all your support 

Parents
  • what, after all, is a pretty significant life event

    I agree with you; even if people do not fully comprehend the implications, impact and details of someone's diagnosis: it is the decent thing to be respectful of the fact that someone has shared their all-important to them news.

    I am involved with a community service organisation where many of my fellow members may be decades / a generation older than I am.  I cannot fully comprehend the reality of everyone's day-to-day lives / worries / concerns / challenges.  However, the minute I realise someone is telling me about a physical / mental health issue, or a relationship struggle - I make sure to stop what I am doing and really listen carefully (asking a few relevant questions when they have finished recounting their story - to help the person know they were heard and their situation was properly considered - even though it might be from my place of limited directly relevant experience).  

    The next time I see them (not by text or email), I try to check-in with the person to see how things are going.  Not least, because you never know how many people (maybe only a limited number) they might have had the opportunity to speak with in person since your last time of meeting them.

    Having reflected upon some of those potentially mismatched experience conversations with seniors - it has made me think a little differently about how I introduce my Autism diagnosis news to people (trying to help them to understand it is still very much a big processing point for me as I acclimatise to the news).

    Recently, I have tried introducing the topic of learning about my Autism diagnosis by starting with saying 4 things:

    1) my news is still quite fresh for me,

    2) there is still a lot more for me to learn,

    3) I am still working out how best to help people understand the support and understanding which I may sometimes need, and

    4) that I am still experimenting with my suitable reasonable adjustments.

    This approach seems to help more quickly sort people into 2 groups:

    a) those who take the trouble to have a respectful conversation about my news, compared with 

    b) the others ...who cannot be bothered (saves everyone some time trying to make a conversation work to "nowhere").

Reply
  • what, after all, is a pretty significant life event

    I agree with you; even if people do not fully comprehend the implications, impact and details of someone's diagnosis: it is the decent thing to be respectful of the fact that someone has shared their all-important to them news.

    I am involved with a community service organisation where many of my fellow members may be decades / a generation older than I am.  I cannot fully comprehend the reality of everyone's day-to-day lives / worries / concerns / challenges.  However, the minute I realise someone is telling me about a physical / mental health issue, or a relationship struggle - I make sure to stop what I am doing and really listen carefully (asking a few relevant questions when they have finished recounting their story - to help the person know they were heard and their situation was properly considered - even though it might be from my place of limited directly relevant experience).  

    The next time I see them (not by text or email), I try to check-in with the person to see how things are going.  Not least, because you never know how many people (maybe only a limited number) they might have had the opportunity to speak with in person since your last time of meeting them.

    Having reflected upon some of those potentially mismatched experience conversations with seniors - it has made me think a little differently about how I introduce my Autism diagnosis news to people (trying to help them to understand it is still very much a big processing point for me as I acclimatise to the news).

    Recently, I have tried introducing the topic of learning about my Autism diagnosis by starting with saying 4 things:

    1) my news is still quite fresh for me,

    2) there is still a lot more for me to learn,

    3) I am still working out how best to help people understand the support and understanding which I may sometimes need, and

    4) that I am still experimenting with my suitable reasonable adjustments.

    This approach seems to help more quickly sort people into 2 groups:

    a) those who take the trouble to have a respectful conversation about my news, compared with 

    b) the others ...who cannot be bothered (saves everyone some time trying to make a conversation work to "nowhere").

Children