• Replies 6 replies
  • Subscribers 85 subscribers
  • Views 284 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Overdiagnosis narrative and the impact on NHS assessments

Ishfish100

Hi all, am new here.

Decided to join this community because I saw other people have conflicting autism diagnoses (one positive one negative) and wanted to raise a question.

Some background: In 2024, after the worst burnout of my life, I decided it was imminently important for me to seek an autism diagnosis. The lack of understanding for why I was feeling the way I was feeling felt life threatening to me. ADHD is definitely part of the picture but it didn't explain the whole story for me (still on assessment waiting list for that). So while I was on the waiting list, I had a private assessment as I couldn't wait the 2 to 3 years for the NHS one.

The private assessment concluded that I was indeed autistic and it set me down a path of self acceptance and combating internalised ableism, and it allowed me to give myself grace and understanding as well as from the people closest to me. I ended up taking myself off the NHS waitlist as I thought "I've got my diagnosis, I won't take up space on the list". 

Fast forward to this year (Oct 2026), after having been told by the GP to put myself back on the list, I had an NHS assessment. This assessment concluded that I didn't meet the criteria for autism. I basically broke down because it didn't make any sense to me, I didn't have any other good explanations for why I am the way I am. I asked them how they accounted for masking and internalised symptoms, and their answer boiled down to "the ARDOS accounts for that and we would be able to tell, since the assessment is a novel environment that would stop an autistic person from being able to mask enough for us not to notice". I wasn't particularly impressed with that answer, and after reading the report they sent and comparing it to my private one, it just smells fishy.

During my private assessment, the 2nd part included meeting a psychiatrist to RULE OUT other potential explanations for my experience, and it came to the conclusion that autism was the best explanation. 

So basically, I want to ask if anyone else has had this experience lately, and if anyone thinks that the government narrative of "overdiagnosis" that they continue to push despite the review showing the opposite has affected NHS assessments to the point where unless you are, for lack of a better phrase, noticeably autistic, you're going to struggle to get diagnosed?

My father who did the parental interview said that it seems clear to him even in the questions they were asking that they had already come to the conclusion that I wasn't autistic. And the ARDOS boiled down to "she speaks well, can smile and laugh, and has an imagination, therefore can't be autistic". Just feel like it's been very reductive and I will be seeking a second opinion from my GP.

Thanks for reading and I'd appreciate hearing others' experiences.

Parents

  • Hi  

    This group as far as I have experienced it is a pretty much overwhelmingly neurodiversity affirming one.  I hope that your being here helps however for the sake of balance ironically I am drawn to highlight that.

    Personally I had a private assessment and I almost had to be dragged to it after burnout after burnout.  I spent the first year after it broadly speaking in denial and deeply believing I was an impostor to the diagnosis.   Cue another big burnout and I couldn't deny the correlates and causations any more.  I sincerely don't wish that on anyone else and would like to do what I can to prevent it happening. for others

    In these contexts I think I get your not being impressed by the answer w/r/to masking (did you mean ADOS rather than ARDOS?)   You describe the private diagnosis being a "deep dive" and the NHS one appearing superficial to you from what I understand of it.  My personal analysis of this would be that you describe the NHS test as you experienced it being flawed - so in the jargon that's a "false negative" test.

    Eventually I came to the top of a NHS waiting list for autism testing a year or so after already having my diagnosis so declined it.  I don't know what it would have concluded and I didn't need another opinion.

    4 years post diagnosis when things are going good for me I still get what i am come to understand as impostor syndrome w/r/to being autistic - it's remarkable that shortly after having to spend most of a day in a darkened room or have found myself transfixed with sensory overload or complete social communication failure I seem to be able to forget I was like that...  self preservation or masking from myself maybe?

    Whatever the cause here w/r/to over-diagnosis and a hidden agenda, specific failings in individual assessor skills or bias I can't tell for sure and so can't comment except to give support and hopefully understanding to you.  I've had a quick scout and the NAS have this to offer https://www.autism.org.uk/advice-and-guidance/diagnosis/assessment-and-diagnosis/criteria-and-tools-used-in-an-autism-assessment and maybe that might be worth a look?  A "deep dive" into the NICE guidelines https://www.nice.org.uk/guidance/cg142/chapter/recommendations#identification-and-assessment-2  might also be worth a look if I was in your position.

    My personal experience remains that pretending too much that I wasn't autistic didn't particularly help me much in the end.

    I hope that your GP is receptive to how you feel at the appointment that you have with them and that you get the right answer for you.

    Best wishes

Reply

  • Hi  

    This group as far as I have experienced it is a pretty much overwhelmingly neurodiversity affirming one.  I hope that your being here helps however for the sake of balance ironically I am drawn to highlight that.

    Personally I had a private assessment and I almost had to be dragged to it after burnout after burnout.  I spent the first year after it broadly speaking in denial and deeply believing I was an impostor to the diagnosis.   Cue another big burnout and I couldn't deny the correlates and causations any more.  I sincerely don't wish that on anyone else and would like to do what I can to prevent it happening. for others

    In these contexts I think I get your not being impressed by the answer w/r/to masking (did you mean ADOS rather than ARDOS?)   You describe the private diagnosis being a "deep dive" and the NHS one appearing superficial to you from what I understand of it.  My personal analysis of this would be that you describe the NHS test as you experienced it being flawed - so in the jargon that's a "false negative" test.

    Eventually I came to the top of a NHS waiting list for autism testing a year or so after already having my diagnosis so declined it.  I don't know what it would have concluded and I didn't need another opinion.

    4 years post diagnosis when things are going good for me I still get what i am come to understand as impostor syndrome w/r/to being autistic - it's remarkable that shortly after having to spend most of a day in a darkened room or have found myself transfixed with sensory overload or complete social communication failure I seem to be able to forget I was like that...  self preservation or masking from myself maybe?

    Whatever the cause here w/r/to over-diagnosis and a hidden agenda, specific failings in individual assessor skills or bias I can't tell for sure and so can't comment except to give support and hopefully understanding to you.  I've had a quick scout and the NAS have this to offer https://www.autism.org.uk/advice-and-guidance/diagnosis/assessment-and-diagnosis/criteria-and-tools-used-in-an-autism-assessment and maybe that might be worth a look?  A "deep dive" into the NICE guidelines https://www.nice.org.uk/guidance/cg142/chapter/recommendations#identification-and-assessment-2  might also be worth a look if I was in your position.

    My personal experience remains that pretending too much that I wasn't autistic didn't particularly help me much in the end.

    I hope that your GP is receptive to how you feel at the appointment that you have with them and that you get the right answer for you.

    Best wishes

Children
No Data