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NHS refuse to assess me

NAS92077
7 months ago

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. 

Parents
  • 7 months ago

    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.

Reply
  • 7 months ago

    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.

Children
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