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Diagnosis - help

Pennie_Jane

I'm really struggling with not having a diagnosis.  I was assessed in 2016 but they said it would be unsafe to give me a diagnosis but that I seem to have 'traits'.  I was advised to contact the Autistic Society for support and read books on Women with Autistic Spectrum Disorder as I may resonate with a lot of what is written.

How am I meant to deal with life having 'traits' but not diagnosis?  I struggle in all aspects of life: I have NO friends, no one to talk to and have regular meltdowns.  I'm now off work due to mental health and physical ailments and feel like I am let down massively - possible fibromyalgia, known to be related to stress and I had an abuse upbringing by a mother who didn't want me and resented me.

What I really want is to be signed off from work to allow me time to recoup my life, get a little dog, go for walks and attend classes while completing my degree.  I can't work and study given how I am physically, and I need quiet and space to study due to ADHD and dyslexia.

Why don't I have the help I need?  I'm struggling. It's not nice being side-lined all the time and being called a 'weirdo'.

Parents

  • I was where you were, told that I wasn’t autistic, I just had a lot of autistic traits. The good news is that I am now diagnosed. The bad news is that it took me fifteen years to get it (sorry), but the long process was partly because it took me over ten years to realise that my non-diagnosis was wrong and that I am on the spectrum, so you're ahead there.

    If you want to get a second opinion about your assessment, I would say do the reading they suggest. Read everything you can get about autism, especially how it presents in women. Make a big list of all your autistic traits and difficulties and how they relate to the diagnostic guidelines, the bigger the better. Then take it to your GP and ask for a second assessment. Show them the list of traits. Then take the list with you to the second assessment too and show it to the psychiatrist too.

    In terms of being signed off from work, sadly that generally doesn’t happen even with an ASD diagnosis, no matter how difficult work is (I struggle with it too). I would go down the route of your “mental health and physical ailments... possible fibromyalgia” to see if you can get a sick note from the GP for those. Is there an HR department at work or an occupational nurse who might be able to help?

    Similarly, in terms of study, have you spoken to the disability advisor at the university and seen what help is available even without an ASD diagnosis? Do you have a firm diagnosis of ADHD and dyslexia? If you do, those should enable you to find some help.

    And I don’t think you’re a weirdo!

Reply

  • I was where you were, told that I wasn’t autistic, I just had a lot of autistic traits. The good news is that I am now diagnosed. The bad news is that it took me fifteen years to get it (sorry), but the long process was partly because it took me over ten years to realise that my non-diagnosis was wrong and that I am on the spectrum, so you're ahead there.

    If you want to get a second opinion about your assessment, I would say do the reading they suggest. Read everything you can get about autism, especially how it presents in women. Make a big list of all your autistic traits and difficulties and how they relate to the diagnostic guidelines, the bigger the better. Then take it to your GP and ask for a second assessment. Show them the list of traits. Then take the list with you to the second assessment too and show it to the psychiatrist too.

    In terms of being signed off from work, sadly that generally doesn’t happen even with an ASD diagnosis, no matter how difficult work is (I struggle with it too). I would go down the route of your “mental health and physical ailments... possible fibromyalgia” to see if you can get a sick note from the GP for those. Is there an HR department at work or an occupational nurse who might be able to help?

    Similarly, in terms of study, have you spoken to the disability advisor at the university and seen what help is available even without an ASD diagnosis? Do you have a firm diagnosis of ADHD and dyslexia? If you do, those should enable you to find some help.

    And I don’t think you’re a weirdo!

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