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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.

  • 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.

  • 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...

  • 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 Rainbow Pixie

    Its hard, and people can helpfully let you know when you get things wrong, but without ideas for how you might get it right you are stuck and left behind and isolated.

    However, accepting all this in you can help you change things.  No guarantees, and its hard work, but you can start to see things a different way.  Brains are programmed to keep itself the same, keep everything going, so we feel stuck as we are - but you can work on changing things, brains have plasticity, they can change.  Lockdown is an example, accepting the situation and making the best of it was the popular way to get through it, but not everyone could just do that or wanted to (brain trying to things the same).

    It can feel sad and depressing to have no social life, but if you flip to being comfortable on your own, but would like a social life, then that is a better place to be.  You can't just build a social life, and forcing it with the wrong people will usually knock you back, get to know yourself, and then work on getting to know others.  I'm on that journey, most here probably are somewhere along it.

  • 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...

  • Hi, and welcome.  You have presented classic autism signs; focus on the self plus sensory issues, social and communication difficulties, meltdowns when things too much, perhaps shutdown, possible selective mutism if mute suddenly without any control of over and not able to unmute at will, and being harsh/blunt, even being flatly honest or realistic can annoy people.

    You say you don't care about other people but having autism can make that difficult anyway - you might be able to learn to focus more on other people, ask questions, be around people more, and then you might find you can care about people.  People tend not to reach out to people who don't engage, its called the double empathy problem - if you don't talk/engage, other people have difficulty with that and then don't talk/engage back (or take offence and get nasty, or walk off etc.).  Its very much our problem to fix.  It can be incredibly hard (or impossible in some case) to get people who feel fully trained up on communication that not all people can communicate as well back - and not just autistic people, if you are familiar with Lee Ridley (Lost Voice Guy) he will tell you that.

    Particular sounds can trigger autistic people, and sensitive hearing can cause triggers if sounds are really loud or piercing.  Learning not to react so much is usually the only option as we can't control sounds that are out there, though autistic people can find ear plugs or ear defenders useful to help them focus or relax.

  • Hello and welcome to the forum. Like you, it took a lot for me to make my initial post so I can entirely appreciate what it takes. Hats off to you for that. 

    Congratulations on the referral and also for enquiring with the GP in the first place. It was again a long journey for me to reach that place prior to my diagnosis a year or so ago.

    This forum is a very helpful place, so hopefully you’ll find that to be the case too.

    Just out of interest, you mentioned celebrities talking of their diagnosis’ and raising awareness (if I’ve read it right). Which celebrities are you referring to here? I’m often looking for instances where individuals raise awareness so would be interested to see who you mention. An individual I appreciate post diagnosis is the current world strongest man Tom Stoltman. He is autistic and through his recent victory in the sport, is now raising awareness around autism- which I for one appreciate.

    Anyways, welcome!