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Hello (plus maybe a little rant!)

Charrrr

Hello everyone,

I'm 42 and have been recently diagnosed with autism, although I've been self-diagnosed for several years, I just didn't trust myself that I was autistic, and honestly it was taking over my life with the ruminating of whether I was or wasn't so I saved up and went down the private diagnosis route (no NHS funding for adults in my county). 

I'm now learning a lot about myself as someone trying to figure out how to unmask and realising that people really don't think/ process etc the same way that I do, and everything else that goes with realising everything I thought I knew isn't what it seemed. 

I don't have any friends with autism (distant family members but not really anyone I can talk to), and I feel in quite a lonely place now. Which is being exacerbated by having to explain things to family/friends that my experience of life has not been the same as theirs, and I get things like 'oh I never thought there was anything wrong with you,' 'you've always been xx to me,' 'it's just your personality' in return. Or they try to share similar but very non-autistic things they do to try to find some common ground - which I totally get, but it also feels like my experience is being minimised bc no one else really 'gets' it, and it's not an easy thing to explain to people.

In some ways I feel like it shouldn't be my responsibility to try to teach people about how I work when my whole life has been spent trying to fit in and work out how NTs go about things. Just as an aside, I got diagnosed with anxiety and depression about 10 years ago, and I remember my mum immediately researching it, sending me links, books recs etc, none of it super helpful but it was nice to know she cared. I told her about 5 years ago I thought I had autism and honestly it's like she just checked out, she got immediately defensive, but even after I said there was no blame from my side that she didn't notice anything when I was young, bc, hey it was the 80s, but even after all that time has passed, there's not been any desire to learn about it, to learn about me - which kind if feels like a rejection. All she said was 'do we have to treat you differently now?'. About a year ago, she told me she thought her brother also had autism because and I quote 'he also doesn't have any empathy', so I'm really working at the absolute rock bottom with trying to get people to understand what I'm going through and have been going through. 

Anyway, hopefully that's not too ranty for my first post.

It would be nice to hear if anyone has any words of wisdom they can share that might be useful strategies in terms of both explanations but also trying to combat the loneliness from the massive gulf that appears to be forming between myself and everyone else I know.  

Parents

  • Welcome to the community Charrr - you will find a lot of like minded people with similar experiences to you plus a weath of knowledge to share including techniques for coping.

    Charrrr said:
    In some ways I feel like it shouldn't be my responsibility to try to teach people about how I work

    It helps to ask for what you want and not need to have to explain the why to everyone. 

    Many of us find it better to not deal with people to avoid this sort of interaction and those who do it regularly find it a constant friction for them, but so long as the benefit outweighs the cost in asking then it is worth the effort.

    Sometimes you just have to put up with people being unwilling to accommodate you and sometimes you have to just be blut with them and either tell them "because I asked you to, I dont have to explain myself" or "because I'm disabled and I don't want to leave you in a situation of knowingly discriminating against a disabled person".

    These are a bit extreme but sometimes when you are out of patience they are the most direct way to get what you need.

    There will be lots of levels between the full explanation and these options depending on how much time you are willing to put into it.

    Charrrr said:
    I told her about 5 years ago I thought I had autism and honestly it's like she just checked out, she got immediately defensive

    I had the same issue which I think is down to a generational thing where mental health was stigmatised when you was growing up and those ideas stuck. Remember that autism is almost always genetic so there is at least a 50% chance that she is also neurotypical and may have poor coping mechanisms herself.

    If you are actually looking for any advice then I can recommend getting a psychotherapist who has a track record of helping autists and talk through all this with them. It was very educational for me and taught me a lot of good coping techniques and understanding of my interaction issues so I could change my approach to be more effective.

    They can also help with any bad behaviours you have developed as coping techniques from accumulated traumas (cPTSD is a term for this) by helping you understand and process those traumas. It isn't much fun but I found it increadibly helpful and healing and it allowed me to forgive many of the failings of others who are dealing with similar situations.

    In general I would say make yourself a part of the community here, find your own style and ask questions, contribute and feel a part of our world. If you decide you want to try more to make friendships or relationships in the neurotypical world then we have had some great threads on this in the past and the search option at the top of the page is good to look for those.

    We have all sorts here - the good, the bad, the ugly and some angels but we all share the same types of brain that are neurodivergent so have a lot to offer.

  • in reply to Iain

    Hi Iain,

    Thank you for your response. There's certainly so much I'm yet to learn about everything, so I appreciate your message.

    Iain said:
    It helps to ask for what you want and not need to have to explain the why to everyone

    The what instead of the why is a much better reframing, thank you for this. Because it sure feels more helpful to have a tangible thing that I need, rather than than trying to explain the unexplainable. 

    Iain said:
    a generational thing

    Oh you're on the money here, she definitely has at least an anxiety disorder and refuses to go to the doctors to get help, which ofc is her choice, but if she doesn't help herself then it feels like a roadblock for me as well you know?

    Iain said:
    I can recommend getting a psychotherapist

    In terms of psychotherapist, I did discuss this with my diagnostic psychiatrist, but since I'd have to go private it's unfortunately not something I can afford at this moment, although this was for post-diagnosis specialist therapy. Maybe if a more generalised approach would be useful I'd go back to that - it was actually an NHS therapist I had for my anxiety and depression that implicitly sent me down the route of my issues 'maybe being something else', so I'm definitely not adverse to exploring that route again, it's just the ££!

    Iain said:
    If you decide you want to try more to make friendships or relationships in the neurotypical world

    Oh no, definitely not! I've enough to deal with trying to manage everything with the very few I have, so definitely don't want to add anymore to the roster! I live in quite a rural place, which is great bc it means I don't see many people, but also in terms of finding an autistic community, not so good. I did have a look to see if there were any late diagnosed adult community groups but there doesn't seem to be anything, so I've joined the community to fill in that missing piece. 

Reply
  • in reply to Iain

    Hi Iain,

    Thank you for your response. There's certainly so much I'm yet to learn about everything, so I appreciate your message.

    Iain said:
    It helps to ask for what you want and not need to have to explain the why to everyone

    The what instead of the why is a much better reframing, thank you for this. Because it sure feels more helpful to have a tangible thing that I need, rather than than trying to explain the unexplainable. 

    Iain said:
    a generational thing

    Oh you're on the money here, she definitely has at least an anxiety disorder and refuses to go to the doctors to get help, which ofc is her choice, but if she doesn't help herself then it feels like a roadblock for me as well you know?

    Iain said:
    I can recommend getting a psychotherapist

    In terms of psychotherapist, I did discuss this with my diagnostic psychiatrist, but since I'd have to go private it's unfortunately not something I can afford at this moment, although this was for post-diagnosis specialist therapy. Maybe if a more generalised approach would be useful I'd go back to that - it was actually an NHS therapist I had for my anxiety and depression that implicitly sent me down the route of my issues 'maybe being something else', so I'm definitely not adverse to exploring that route again, it's just the ££!

    Iain said:
    If you decide you want to try more to make friendships or relationships in the neurotypical world

    Oh no, definitely not! I've enough to deal with trying to manage everything with the very few I have, so definitely don't want to add anymore to the roster! I live in quite a rural place, which is great bc it means I don't see many people, but also in terms of finding an autistic community, not so good. I did have a look to see if there were any late diagnosed adult community groups but there doesn't seem to be anything, so I've joined the community to fill in that missing piece. 

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