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NHS refuse to assess me

NAS92077

Hi all,

I’ve known for years that I am autistic, possibly with adhd as well. I received a letter from the local team yesterday basically saying that because I speak too well, i don’t have ritualistic behaviours (I don’t in public thanks mum.) and I don’t have in depth interests and show too much emotion that they won’t assess me. 
Every test I’ve done alongside my doctor has shown a need for it, is there any way to appeal or even get back on the waiting list? 
They’ve based their decision on a 30 minute appointment where I was shoving everything down so hard out of habit and find it difficult to talk about the issues I have because they were always disregarded when I was younger.

tThey don’t see the meltdowns, they don’t see me struggling with conversation because people get annoyed when I can’t talk about anything but my interests because it’s all I think about, how I shut down when I get too stressed. 

i think I just needed to get this off my chest really. I’m fed up of being dismissed because I don’t act the way they want me to when I’m in public. That I had to learn to hide it because I’d get in trouble if I didn’t. I’m struggling big time right now and I just want to know if I’m being a baby over it. 

  • It is worth adding, that also having ADHD can make the 'special subject' thing present differently.  purely autistic people often have a single subject they immerse themselves in, whereas ADHDers seem to (certainly in my case) have an area of study and go into detail on all aspects they can think of that have an effect on there chosen special interest. My 'area of interest' is the problem of violence in the world, and I have studied not only aspects like military strategy, but also crime and punishment, psychology, economics, ballistics ... all sorts.  We have a special interest, but we also have a need for the dopamine hit of studying a new topic!

  • in reply to Iain

    indeed.  take this as an opportunity to teach the doctor how autism presents in people. there are a lot of people in the medical community who have no clue, yet are happy to diagnose (that you don't have it).

  • in reply to Iain

    I should have added that with this info you take it back to the doctor and tell them that you also exhibit masking (another autistic trait) which caused  you to come across differently in the last meeting, so you made the following notes to help avoid your subconcious from giving a misleading representation of you.

    If nothing else it flags up to the doctor that they don't know enough about autistic masking and they may learn from this for future patients.

    I think it should lead them to put you up for an assessment, assuming your traits meet the level needed.

  • I have struggled with this also.  I am now on 'the pathway' to an assessment.

    I suggest going through the DSM definition for what qualifies you as autistic;  Go though each aspect and give ALL the details you have on your struggles in that area throughout your life.  You can watch the youtube videos where the creators go through the DSM criteria and describe their issues.

    Also, emphasise that you were masking.  I am very good at masking and it is why I struggled to get an assessment.  Depending on how you feel about what happened, express your disappointment that they were seeming unaware that autistic people mask and that we have had "behave NORMAL" beaten into us all our lives (something literally).   I'm sure we all feel that stab of discomfort when we hear the phrase from our childhood, "Look at me when I am talking to you!".

    School reports of issues can be included.  Because of my shutdowns after school as a child, I went through months of assessments because they suspected that I had digestive issues. Include it all.

    I have several pages of notes about my autistic behaviours and also school reports. You could also ask for your medical records to review if there is anything in there that would be explained by an autism diagnosis. 

    Sadly, going through this process, you will experience the full breadth and depth of incompetence and arrogance of the medical & MH community. 

    If, after all that, you are still not satisfied, escalate it to the managers of those who assessed you, then their managers and so on.

  • A starting point would be to test yourself and see if a basic test indicates if you are neurodivergent "enough" to qualify as autistic.

    There is a decent (free) online test that I've recommended a few times here:

    https://www.thevividmind.org/blog/test/autism-test-online/

    Screen shot the results and make your own notes on what it identifies as your most noticable areas.

    The other thing to do if identify the main autistic traits you exhibit and provide some notes on where these are demonstrated, how severe they can be and how you cover them up (i.e. mask).

    The most severe areas are the ones to focus on, but keep a broad base as well as you need to meet a range of criteria to be assessed as autistic - it is a spectrum condition after all so you need to score high enough on a range of areas to get the assessment.

    Part of the justification for this approach as the lable of autistic if used to qualify you as disabled and hence have access to benefits, so the government don't want any but the most impacted to qualify.

    If it turns out you are not neurodivergent enough to earn the label then see that as a good thing - but learn about your traits and how to live with them as this is what will probably make the most difference for you in the long run.

    Good luck.