I am 35 and think I may be Autistic and doctors have referred me. Now it's a waiting game.

Hello everyone,

I'm not very good at putting myself out there and never really done forum posts before. So this in itself is quite difficult for me. I am also a very introverted and private person so it makes it even harder.

I've struggled with things all my life which I have always accepted as being part of my personality and me in general. Recently though through celebrity awareness around autism and talking about their diagnosis' it caught my attention and made me stop and think as I recognised myself and my traits in a lot of theirs. I have never really understood autism and maybe thought it was something it necessarily wasn't. But have noticing these traits I came onto the site to understand a little more. I suddenly identified with a lot of the information I was reading. I have always suspected that there was something about me which would diagnose me with something, but I just didn't know what. After discussing with my doctor they couldn't rule out autism but also identified it could be a combo of OCD and agrophobia. I accepted the autism referral as I felt answering just 5 questions from the doctor on the spot when I am a person who has to go away and think about things wasn't the best way. So I certainly am happy to be getting this referral however I know it could take 2 years to get a potential diagnosis with waiting lists etc. I have been waiting over 3 months already to even hear any info on my referral. But double checking with the doctors 2 weeks ago they confirmed it had indeed been made.

So at the moment I feel like I am in a place based on all my life experiences from childhood to present that I am an autistic person. I struggle with certain things on a daily basis they I find difficult to deal with, but without the diagnosis I feel like a fake. Which is actually causing me stress and upset where I tear up regularly because I know I can ask for help, but whilst I am in this limbo phase I cannot.

The biggest things I have noticed within myself which I struggle with is changes, sounds (only certain sounds though), what I call my silences and other sensory situations.

When I hear sounds I can't control, not necessarily volume of sound, but maybe hearing neighbours through the wall, or in particular the washing machine being on, music such as jazz. It distresses me to the point where I start getting very upset. I start by reacting angry and then eventually cry because of it. Once it all goes away I instantly become ok.

With changes it is minor ones that affect me. A good example is I can move home and be perfectly fine. But if somebody changes their appearance or if I have to walk on a different side of the road or even down to changing that wallpaper on your phone. I get very upset like something bad will happen as it's different and it shouldn't be.

My silences that I personally call them are when I just go silent and I like to be sat hidden in a corner. But I can't talk and am paralysed in muteness until I can come out of these silences. Could be hours, days, I've even been like it for a week before. This is something that has led to me being called weird, rude, awful person and the truth is I can't control it. Something triggers me, I never know what the trigger is, but I know I want to be back happy and talking and I simply can't.

My other sensory situations can vary, I don't like mixing with people. I can hold a conversation but only if it is instigated by others, if someone talks to me I will talk. If not then there will be no conversation out of me whatsoever. So I always get left out of group situations. I never ask people questions about their life, as I don't care. I know that might sound horrible to say but I always get told I am blunt about things and I can't always explain things a better way.

So there are lots of other things I could talk about, but this is just the start for me here, and it is difficult because I don't know where I sit yet so it scares me to think that I could potentially never have an answer to what's wrong with me.

Thank you for reading, apologies it was very long.

Parents
  • Hi and welcome. I am new here too and many of the things you say I can relate to. I am a very private person too so sharing isn't something I'm used to especially in my day to day life. 

    Well done on going to your GP. I'm still undecided as to whether that is the right option for me but I feel there is no rush. You will get some very good advice here from people who have been through it and hopefully that will ease your worries a bit.

    I know exactly what you mean by silences - it happens to me too. I can be fine one minute and then something very small and trivial can knock me off and I can't speak/make eye contact or function at all for the rest of the day. In my head I can reason with myself that I need to 'snap out of it' but it's not something I have control over either. It can be very annoying if it happens at work or before a (very rare) social occasion. I can never really work out the trigger for it but often it's more a thing when I'm already tired.

    I now see I was selectively mute as a child, only really talking to my immediate family. I think I still have a preference for muteness but have to speak to some degree to operate in society. Its exhausting and draining though. My sentences are short and to the point. I glaze over quite quickly if someone talks for too long (unless it's something I'm actually interested in of course) but yes, a large part of me can't be bothered with the inane niceties of 'chit chat'. The really annoying thing is that I DO actually want to connect with people. If only mind reading was really a thing...

Reply
  • Hi and welcome. I am new here too and many of the things you say I can relate to. I am a very private person too so sharing isn't something I'm used to especially in my day to day life. 

    Well done on going to your GP. I'm still undecided as to whether that is the right option for me but I feel there is no rush. You will get some very good advice here from people who have been through it and hopefully that will ease your worries a bit.

    I know exactly what you mean by silences - it happens to me too. I can be fine one minute and then something very small and trivial can knock me off and I can't speak/make eye contact or function at all for the rest of the day. In my head I can reason with myself that I need to 'snap out of it' but it's not something I have control over either. It can be very annoying if it happens at work or before a (very rare) social occasion. I can never really work out the trigger for it but often it's more a thing when I'm already tired.

    I now see I was selectively mute as a child, only really talking to my immediate family. I think I still have a preference for muteness but have to speak to some degree to operate in society. Its exhausting and draining though. My sentences are short and to the point. I glaze over quite quickly if someone talks for too long (unless it's something I'm actually interested in of course) but yes, a large part of me can't be bothered with the inane niceties of 'chit chat'. The really annoying thing is that I DO actually want to connect with people. If only mind reading was really a thing...

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