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

Rainbow Pixie

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

  • Apologies I got confused when trying to reply to the messages then.

    Thank you for your responses. In terms of celebrities it was Chris Packham and I think her name is Christine McGuinness. Basically Paddy McGuinness' wife and it was her experiences that I had this realisation with.

    I think regarding the other response in terms of talking to people etc, I agree with everything said there. Its just for me its certainly not a natural thing to do and even though in my head I know I can go start a conversation. I simply don't because my mind can go into overload. What if this what if that etc. So I end up getting sad I have no social life whilst also glad I have no social life. It's hard to explain when sometimes I say to myself what the heck you thinking...

  • in reply to Rainbow Pixie

    Having a word with yourself from time to time can be very necessary when you are autistic, you are sometimes well aware of the massive mistake you are reeling from, but not in control of how you achieved it.  Opportunities to learn, from mistakes and also success.  Debriefs, pep talks, kicks up backside, whatever method words - as long as its constructive, as blame and self-destruction aren't learning and trap you in a bad place.

  • in reply to Autimator

    At secondary school I used to make a lot of spelling mistakes, potentially dyslexia as my Dad has it, but may just have been difficulty focusing and thinking.  I used to cross mistakes out, but then usually go on to put a box around them and fill the box in with plenty of black pen.  Bang! And the mistake is gone, but black boxes don't look great either and teachers don't like them.  Had to stop myself from obliterating and just live with the original mistake, and try and not make the mistakes.  We can put too much effort into not coping with mistakes or punishing ourselves, and then we don't put effort into learning to be more careful.  At college I had to write assignments by hand on paper, and decided if I made a mistake to start the whole page again, so it was 100% neat.  Very painful to have to write pages, and got better and made fewer mistakes, and  didn't lost marks for messy work.

    Just an example, and a mild one in the great scheme of things - but if we examine what we are doing and thinking, we can start changing things and get better at things.

Reply
  • in reply to Autimator

    At secondary school I used to make a lot of spelling mistakes, potentially dyslexia as my Dad has it, but may just have been difficulty focusing and thinking.  I used to cross mistakes out, but then usually go on to put a box around them and fill the box in with plenty of black pen.  Bang! And the mistake is gone, but black boxes don't look great either and teachers don't like them.  Had to stop myself from obliterating and just live with the original mistake, and try and not make the mistakes.  We can put too much effort into not coping with mistakes or punishing ourselves, and then we don't put effort into learning to be more careful.  At college I had to write assignments by hand on paper, and decided if I made a mistake to start the whole page again, so it was 100% neat.  Very painful to have to write pages, and got better and made fewer mistakes, and  didn't lost marks for messy work.

    Just an example, and a mild one in the great scheme of things - but if we examine what we are doing and thinking, we can start changing things and get better at things.

Children
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