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Feeling like a fraud in limbo

P1nkG1n

Hi all, 

I'm 33 year old female in South Wales and currently on the waiting list for Autism Spectrum Disorder. There have been many things throughout my life that point towards having autism such as peers claiming "You're not normal!" and my response simply "Define normal" (I never did quite work that out. I would have probably classed myself as a bit of a chameleon. I got on with most people although I feel those relationships have always been rather superficial. I've struggled with poor mental health for as long as I can remember, although there have been times the pit of depression has felt like someone else lived it. Autism is something that has crossed my mind previously and online tests have usually scored me as borderline (around 7/10) although I know these are not diagnostic tools I could never understand why others would score about a 2, especially if they had weird little quirks.

Anyway, rambling away.... I moved in with my boyfriend nearly 2 years ago. He is the one that kept on about me being "autism girl" (said playfully). I had an appointment with a Mental Health Practitioner and he did a pre-assessment where I scored 10/10. I then had to fill out a few more questionnaires to self-refer to the Autism Spectrum Disorder (ASD) hub for an assessment. I'm aware as an adult it will take some time to be assessed. Covid-19 has not helped that.

Meanwhile I am really struggling to make sense of how I am supposed to be/act. I feel like a diagnosis makes sense so maybe I should 'claim' to be autistic and make changes where necessary. Then on the other hand I might not be and maybe I act like this "because of that thing that happened" (a traumatic event which has created some issues but no, it's ridiculous to even claim that). I feel like the masking makes sense. So do I not have to do this so much now? Or is life always going to be this tiring? I am exhausted from trying to work everything out. How do I know what is even real anymore if how I perceive things is not the way of "normal" people?

If I am not autistic then what the heck is up with me and my issues? From some things I have read/seen online I can relate. Then again I really don't have the same issues as many other people with autism. I can manage money, work, have a partner etc. doesn't everyone find life stressful? If everyone is different and has different ways to cope then do I try and keep calm and carry on? What will I gain from diagnosis? 

What even happens to get a diagnosis? Am I going to be stuck in a 2-way mirrored room whilst I play with Lego? 

So, apologies I think I just needed somewhere to try and understand what is going on. I would be grateful if anyone has any tips on dealing with the wait, uncertainty and what happens in assessment. I think it would be beneficial to understand what changes have been put in place too. 

If you got this far, well done and thanks for reading.

Parents

  • Life/people are wonderfully complex and I feel it's nigh on impossible to be a binary switch of almost anything.

    If we see the world as percentages. Some of the time, I feel like I 70% fit in with people, sometimes it's barely 5% fitting in. Depends on the day, my outlook, the kind of people I'm around (plus other factors).

    Is the two-way mirror feeling a state of mind? It sounds like you've been doing pretty well already.

    If you can get a diagnosis, that sounds like a possible bonus.

    Everyone finds life stressful to different degrees. Some people with autism/Aspie feel anxiety and stuff on a near permanent basis, for others it comes and goes. Good days, tough days, good years, tough years.


    My own 'I'm looking pretty clearly Aspie' has come during lockdown so I'm in that limbo too.

    Through the last few months, I've been through periods of frustration with the limbo feeling. However, when I do get frustrated, I soonish or eventually decide 'does it really matter for now?'.

    In time, I may pursue a diagnosis but most days I'm just trying to get on with things. The main thing for me has been figuring out that is likely a very good reason why life has been so hard. So, a self-diagnosis has already taken quite a lot of weight off in a way.

    And it's been really nice having people on youtube and here who understand some of an Aspie life's little struggles that most of my friends don't really get.


    I really like the fact that the autism/Aspie community haven't rejected those that are between diagnoses or otherwise struggling to get recognised.

    I hope you're not feeling too much a fraud. Your experience is valid in its own right.

  • in reply to calmerchameleon

    Hi, 

    Thanks for your response. I get your points about feeling different on different days. Today has been better but I feel that is because I have an amazing manager who is speaking with HR and referring me to occupational health. Literally all I'm asking for is a bit of information and time to process it. I get overloaded and it's like my brain gets the blue screen of death. 

    The doing well... yeah, there are some things going great. Then everything gets so hard to manage and I have epic meltdowns. Many things have happened and I now wonder if that's to do with a naivety I hadn't recognised. I think I mask pretty well. 

    The mirror was literally in reference to what I think might happen when I have my ASD assessment. I've filled out so many forms already. I have no idea what to expect. 

    Self diagnosis is difficult. The words from my mouth are now "I'm awaiting an autism assessment" rather than I'm autistic. I guess it feels like I'm making a claim that may not be true. Apparently I have a real issue with telling these lies lol. Maybe I should just claim I am autistic until told otherwise now. Confused. 

  • in reply to P1nkG1n

    I can't fault the true response. Your situation is a bit different to mine as you're in employment. Being factual seems to make sense given that context. I wonder if others may have something to say on this?

    I'm, for the first time in well over a decade, not employed. So, labelling myself self-diagnosed works for me in the position I find myself in at the moment. [On that side, it's made quite a big difference in that, when I struggle, I've stopped kind of scolding myself for not being 'on it' or 'good enough'. Now, I ask myself, "is this maybe an autism thing?", "what can I learn from this?", "what expectations should I reasonably ask of myself here?"]

    So, the point here is that I have self-diagnosed because, at present, there's no legalities I'm getting involved with.

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  • in reply to P1nkG1n

    I can't fault the true response. Your situation is a bit different to mine as you're in employment. Being factual seems to make sense given that context. I wonder if others may have something to say on this?

    I'm, for the first time in well over a decade, not employed. So, labelling myself self-diagnosed works for me in the position I find myself in at the moment. [On that side, it's made quite a big difference in that, when I struggle, I've stopped kind of scolding myself for not being 'on it' or 'good enough'. Now, I ask myself, "is this maybe an autism thing?", "what can I learn from this?", "what expectations should I reasonably ask of myself here?"]

    So, the point here is that I have self-diagnosed because, at present, there's no legalities I'm getting involved with.

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