Coming to terms with realising you are probably autistic

Hi,

Sorry I've been posting on here such a lot recently.  I was just wondering if anyone can relate to this.

Did you find it hard to come to terms with, when you first realised you might be autistic?  I haven't yet been diagnosed, but I'm becoming more and more sure that I am autistic, the more I find out about autism and recognise the signs in myself.

I'm finding that it's very hard for me to concentrate on work at the moment, and I'm just feeling upset, tense and unsettled.  Also really anxious.

I don't know if this is normal or if anyone else experienced this when you were at a similar stage?

I don't know if I should try to fight it and carry on as normal, or give myself a bit of slack and try to rest a bit more when I can.

  • Hello again,

    Yes, I recently read about the link between ASD and eating disorders. Very interesting. But sad that you have had to struggle with such a thing in the past.

    To answer your question, when I realised, I didn’t want to think about it. And when it cropped up time and and time again, I kept giving myself reasons for not having it, even though I’d always known I was different. I just put it down to the social anxiety I had been diagnosed with in the past.

    I told myself I was good at talking to people, didn’t have routines and had no food problems etc. 
    Then over this year I begun looking at how I live. How I act is normal for me, so I’d never questioned it, but it was different to others.

    I have strict routines. I’ve had obsessions and interests. I have problems with certain foods. I do stim. I’ve had disordered eating. I’ve had burnouts and meltdowns, and regularly shut downs, anxiety and depression. The more I think, the more I find.

    During recent CBT I discovered that I don’t know I feel. I cannot describe emotions and feelings. I would have my therapist give me descriptive suggestions to pick from to explain how my mind and body felt during stressful experiences because I couldn’t articulate them myself.

    I’m actively trying to recollect things from my childhood now, to tell my psychologist. I remember a few tantrums at home, but I did a lot of bad things at school. Thing is, I never really got reprimanded or had my parents involved, because usually I was exemplary. A quiet, studious child, who wouldn’t put a foot wrong or break rules.

    As a child in nursery, a teacher asked my mum if I was OK. She said I didn’t join in, wouldn’t sing nursery rhymes, and never spoke. My mum told her it was because I thought it was nonsense and didn’t want to. 
    (We’re sure my mum is also on the spectrum. She agrees but doesn’t feel she wants to explore it too much, as she in her 70’s)

    Sorry, I think I’ve gone off topic a bit. I’ve always so much to say!

    Thank you for your kind words regarding my situation. I do hope I find some answers. It seems to be one hell of a process. I do worry why, if I’m 48. Is there a point? My psychologist said he was dealing with a client in their mid seventies, and it’s never too late.

    Do you have an assessment booked, or one in the pipeline? Will it be NHS or private? 

  • Hi  Catlover,


    I'm really glad to hear that your assessment will probably be soon.  I hope that it goes well and that you will feel listened to and validated.  I hope you will find some of the answers about yourself that you have been looking for.

    It sounds really frustrating that people didn't understand you in the past, and that you didn't get the support you need.  I have had similar experiences.  I had an eating disorder in my teens, and have recently read that many anorexics are autistic.  If there had been awareness of this at the time, I may have been diagnosed sooner.  I hope you eventually may find some peace within yourself about the fact that you weren't diagnosed earlier.

    It sounds as though, when you first realised that you were probably autistic, your autistic traits intensified.  Have I understood correctly?  Or was it simply that you became more aware of them?  

  • My realisation that I was probably Autistic came like a bolt of lightning around the same time my teen was about to be assessed. I put it out of my mind, as I was focusing on her, but started to struggle severely with my mental health and anxiety. A year or so later I suffered a burn out from trying to hide from it.  I can’t begin to explain how I felt. But just over a year since, I’m recovering. Yet, I’m continually recalling instances from my past that scream Autism, and I feel angry and sorry for myself because it wasn’t picked up and I never received support. Life could have been so different. I’ve suffered in one way or another as long as I can remember. I don’t think like the masses, and find  communication awkward, confusing and strange.
    I have since had a preliminary consult with a Psychologist, and have put myself forward for assessment, and should start the process in December.

  • Hi sport,

    Did you have another autism assessment?  What was the outcome that you were hoping for (did you think that you might have something different)?

  • I was retested and found to confirmed to be autistic with +dd.I had wanted to have it to maybe lose the label.

  • I have learned to adjust with my wife's help the male ego hit rock bottom.

  • It is frustrating not to have been diagnosed earlier.  It's good that you are still in your early twenties, though.  I wish you all the best in continuing to come to terms with your diagnosis.

    You mention that you wish someone had picked up on it when you were younger.  I feel the same.  I don't know if this is true of a lot of autistic people, but for me I feel like there was a lot going on under the surface that people didn't see from the outside:  I was quiet and didn't (still don't) make a lot of facial expressions, so people didn't realise how much I was struggling.  It feels like Aspergers can be a hidden problem, which perhaps makes it harder to diagnose.  I also did my very best to behave normally and have normal conversations with people.  I'm a woman (from your picture I'm guessing you are a man?) and apparently women often get diagnosed later in life because they try really hard to cover up their social awkwardness.

    I really hope that the official term becomes ASC rather than ASD.  It's so upsetting being told you have a disorder, when you've already spent most of your life feeling like there's something wrong with you.

  • Im 22 got diagnosed at 22 also

    social anxiety and low self esteem.  Sleep issues are also a chronic thing

    I deal with the same stuff too, I also wish someone picked up on it when I was younger too it would have spared me from a lot of "stuff".

    I use aspie because I am pretty much the stereotypical Aspergers type of person when you read up about Aspergers rather than classic autism, they got rid of Aspergers as a diagnosis because of issues for people getting help with Aspergers rather than autism and they said there are a lot of similarities between the two so they just put it all under the umbrella of Autism Spectrum disorders, but I don't think I really like that there's not reason I shouldn't have access to help because of a Aspergers diagnosis rather than a autism diagnosis and it's still quite normal from what I have read, and if you just search up "classic autism" and "Aspergers" there are differences but for me the details matter.

    They are also trying to change from ASD to ASC (from disorder to condition)

  • Hi O, thanks for sharing.  Do you mind if I ask how old you were when you got the diagnosis?  I'm 38 and will probably be 39 by the time I have my assessment.  I have spent a really long time trying to figure out why I have had various problems - for example, I had an eating disorder and have always struggled with social anxiety and low self esteem.  Sleep issues are also a chronic thing.  When I learned about autism, I understood that I probably have a spectrum condition, which would explain all the different aspects.  

    You mentioned that you hadn't thought about autism as a possibility before, because you didn't know much about it.  I was the same.  I wish that there was more mainstream awareness of it - perhaps then more younger people would get diagnosed.  I wish someone had helped me understand earlier that I was autistic.  Then I wouldn't have spent so many years thinking that there was something wrong with me.  I feel bad about this sometimes, but then I think that the silver lining is empathy.  The fact that I struggled for a long time, not knowing the cause, can help me empathise better with others on the spectrum.

    You use the term Aspergers.  I prefer that to 'ASD'.  I hate the 'disorder' term.  I like to think of brains as like seashells on the beach.  Each one is formed slightly differently, like anything in nature.  I know people aren't diagnosed as Aspergers any more, but I would prefer to use this term for myself because at least it's neutral.

  • I would like to add that I did it for me and it's something that I keep quite private in my life I'm open about it on here but day to day I don't really talk about it because it was just something I needed to help me understand my self better because (and this is something of a "symptom") I never felt "real" in the sense I always felt so different from everyone and so alone and I never knew why and it got me down so much. But now I know and there is a reason I feel a lot better in my self in the sense that I'm not going crazy. I have days where I doubt that I actually am but then I just look over the notes I made about my traits and then I realise that I'm not wrong and that it's hard because there is not way to feel what someone else feels, like trying to describe colours to blind person there's no common reference point that people can use especially for how you perceive the world all I know is that for me the world is different than how most people see it.

  • Both I self diagnosed myself and then when I was sure I got a formal diagnosis to see if I was right because I didn't 100% know and a part of me though that I might have just held onto to it because I was struggling a lot at the time so I wanted a professional to assess me.

    I had a bit of a breakdown in my mental health after Christmas it happens to me every so often it lasts for various amounts of time for as a long as I can remember and nothing I ever did to help me worked so I started looking into mental disorders and Personality disorders, I never thought of autism before because I didn't really know about it at all and my view of autism was like rain man or Harvey Price (really ignorant I know). But as I was reading I started to relate more and more and I looked into to it more and more I spent all day every day for about 2-3 months just reading and watching videos about autism in adults and undiagnosed autism and Aspergers etc and then I basically came to the conclusion I'm on the spectrum.

    When I got my assessment the doc said that I was "A text book classic case of Aspergers syndrome" before it was a removed as a diagnosis.

    That's pretty much my autism story in a nutshell, been diagnosed since march

  • Hello O,

    Thanks for sharing this.  I'm interested to know, did you self-diagnose?  You mentioned that you were finding out on your own that you were an Aspie.  I guess I'm self-diagnosed at the moment, although I'm still waiting for an assessment.  I'm pretty sure that I am, but sometimes I wonder what I will do if it turns out I'm not.

    I can relate to what you say about being scared and relieved at the same time.  Also about how your knowledge of autism blew away everything you thought about yourself as a person.  I'm having a similar experience.  I think I'm perhaps even starting to accept myself, which is something I've never been able to do so far.

  • I felt pretty much the same as you the only thing I would add to that is for me it was very confusing because I always struggled with my own sense of identity and as I was finding out on my own that I'm aspie it grounded me a lot because I could relate so much to what I was reading and watching etc that it blew away pretty much everything I thought about myself as a person. Which was both quite scary and relieving at the same time.

  • Hello again,

    It takes a lot of courage to share deeper thoughts and feelings like you have, and to be vulnerable.  Thank you for being willing to share these things with me.

    Your feelings are valid, even if you feel differently about things to some other people.  I may be wrong, but it looks like you are struggling to accept your own feelings and your own self, so there is an inner conflict going on.  Sorry if I have misinterpreted this.

    It's OK not to want to be autistic, and not to want to accept it.  

    You're not alone:  I have also deeply regretted the way I have behaved and the things I have said to certain others.  It's been so horrible when I've driven away people who I like.  

    Anyway, I just want to say that I wish you well.  

  • Thank you for your kind response. 

    i need to give apologies for the way I put my point across.  My perception is skewed.  I ‘felt’ bullied.  They were professional.  My feelings are a danger to me.  They are a language I cannot translate.  When I have a reaction it is disordered, often extreme, and rarely appropriate to the situation at hand.  Even now as I write I am trapped by my inability to express what my intentions in expressing what these words necessarily fail to do. 
    I may well have an illness of perception.  

    My feelings are not a guide to any truth apart from their own articulation of my insane reactions.

     I did not want a diagnosis of autism: to me it was an insult.  That is why I felt insulted, just like I felt insulted at school when I reacted inappropriately and over-sensitively to other boys’ general banter.  ‘They’ we’re not really a collective, a group but my illness of perception led to a type of paranoia where I imagined them into being a bullying mob. 

    Interestingly, for me, this happened most often when I was under the stress of increasing changes in my young life. 

    The idea of a second opinion appeals to me. 
    I appreciate your comment and the opportunity to express in this forum, at least for now. 

    later I may regret it when I misinterpret a reply because of my self-centred nature.   It’s strange being powerless over my own selfishness and witnessing myself act crazily as if the world revolves around me.   This condition automatically discourages my better self: it smothers my consideration of the needs of other human beings.  I am so glad that others have survived my worst autistic traits. 

    I have to be careful sharing on this forum.  I need to bear responsibility for the words I use.  If I type this text I don’t get to control the reader’s private mental response nor do I get to control their fingers if they wish to type other words in response.  It would be dangerous for me to rely too heavily on responses placed here as my salvation.  

    Shall I risk posting this? 

    Maybe just getting it out of my system has been sufficient.

    if I perceive abuse in a reply I can always just avoid the community for a while. 
    I did that a month or two ago because of a different topic.

    No one was to blame:  my over-sensitivity is not my license to run the Universe.

    If you are reading these words I wish you well today.  If you are not reading these words I still wish you well. 

  • I'm sorry to hear that.  They really shouldn't have bullied you - that sounds really unprofessional.

    I guess the uncertainty may be difficult.  Are you considering looking for a second opinion, or would that perhaps not help?

  • I was diagnosed in 2018 and shocked to learn that I have ASD.  I still can’t accept it despite it making sense of certain things. I felt ‘bullied’ by the panel who made the diagnosis.  I wonder did they err in their judgment? 

  • Thank you. It’s my favourite accomplishment it is wonderful. Thank you I’ve had lots of support which has been wonderful so im On the right track, hopefully meet someone one day but understanding myself better is my main priority right now.

    I think fewer people would judge, but yes someone high empathy or aspergers would certainly try to help and understand xx

  • Hi NAS74112, I'm so sorry to hear about the abuse and how it's affected your ability to trust.  From what I've read, it sounds like a lot of autistic women have been abused in some way. Unfortunately so have I.  I hope you find the support you need.

    Great to hear about your work with Deaf people.  It sounds like you've made a difference to lots of children's lives.  I think that's amazing.

  • I work with the Deaf. Won’t go into detail for privacy reasons but have worked with children with issues for twenty years! 
    Im burned out with it now though :)