Official diagnosis

Hello, I’m self-dx and very sure. My AQ50 score is 34, which backs me up. But it’s life history and current challenges that make me sure. 

My husband doesn’t believe in self-dx and is insisting on an assessment with a professional. 

I’ve been placed in multiple life threatening, surgery requiring situations due to medical professionals gaslighting and assuming I was making symptoms up. I really REALLY don’t want to expose this to that. 

I feel like I finally found my people. I’ve been alone for 38 years. I knew there was something “wrong” with me. But I had no idea there were other people just like me. I don’t want that taken away. 

Parents
  • Self diagnosis/identification is ok if it opens up the community to you and guides you to information and reading that you find helpful. Where it doesn't quite work is if you need something to access services or reasonable adjustments at work (that's hard enough even with a formal diagnosis - although if I'm wrong, hopefully someone could put me straight on that).

    Simon Baron-Cohen, the author of the AQ50, https://www.autismresearchcentre.com/tests/ isn't keen on the test being used as a diagnostic tool. I think the idea is to use it screen someone where a referral for a full diagnostic would be appropriate. There's different ideas in the academic literature of where that cut-off should be (from memory your score is pretty much over all the thresholds), or how useful the AQ50 is in predicting a diagnosis (the shortened version from my understanding isn't good at all - and self-report tools can only go so far). Having said that I'm aware of people self-assessing with it, and if a formal diagnosis isn't essential to your needs, then I don't see any issue with that. (On those occasions where I've been clinically depressed, I haven't needed a doctor to diagnose me, I have needed him however to sign off that bit of paper to have work give me some room).

    I'm right there with you on medical professionals. Some of my experiences have been great (my diagnostic team were fantastic), others - not so much. My occupational health contractors at work gave me the clumsiest return-to-work assessment I've ever experienced, the first time I saw a GP about my longstanding mental health struggles it was attributed to A-Level stress (things were different then - I'm 46 now) and my family pretty much denied I was genuinely struggling with anything at all, even when I shut down for 6 months and just about managed to eat but wasn't able to do anything else.

    Thing is, formal diagnosis or not, if you're connecting with people though a shared experience then no-one can take that away. Although I found the security and psychological relief of the diagnosis invaluable - but then I found the objectivity that came with an assessment easier to wrap my head around than making trying to figure out which category of the ICD-10/DSM  my own fuzzy emotions and general thinking fitted into. With the follow-up sessions I've finally accepted that I can't fix myself, but just find ways to manage my day to day life better and my psychologist does have a knack of pointing things out I hadn't considered before. 

    The other thing is cost. NHS takes ages and private can be costly. Like I say, if you don't need to access govt services, not that there's much out there anyway, or don't need your employer to provide adjustments (formal diagnosis helps if things have to get legal), then nothing wrong with self-diagnosis/identifying.

    (If it's any help NAS has a page on the whole process here https://www.autism.org.uk/advice-and-guidance/topics/diagnosis)

    Welcome to the forum btw. 

Reply
  • Self diagnosis/identification is ok if it opens up the community to you and guides you to information and reading that you find helpful. Where it doesn't quite work is if you need something to access services or reasonable adjustments at work (that's hard enough even with a formal diagnosis - although if I'm wrong, hopefully someone could put me straight on that).

    Simon Baron-Cohen, the author of the AQ50, https://www.autismresearchcentre.com/tests/ isn't keen on the test being used as a diagnostic tool. I think the idea is to use it screen someone where a referral for a full diagnostic would be appropriate. There's different ideas in the academic literature of where that cut-off should be (from memory your score is pretty much over all the thresholds), or how useful the AQ50 is in predicting a diagnosis (the shortened version from my understanding isn't good at all - and self-report tools can only go so far). Having said that I'm aware of people self-assessing with it, and if a formal diagnosis isn't essential to your needs, then I don't see any issue with that. (On those occasions where I've been clinically depressed, I haven't needed a doctor to diagnose me, I have needed him however to sign off that bit of paper to have work give me some room).

    I'm right there with you on medical professionals. Some of my experiences have been great (my diagnostic team were fantastic), others - not so much. My occupational health contractors at work gave me the clumsiest return-to-work assessment I've ever experienced, the first time I saw a GP about my longstanding mental health struggles it was attributed to A-Level stress (things were different then - I'm 46 now) and my family pretty much denied I was genuinely struggling with anything at all, even when I shut down for 6 months and just about managed to eat but wasn't able to do anything else.

    Thing is, formal diagnosis or not, if you're connecting with people though a shared experience then no-one can take that away. Although I found the security and psychological relief of the diagnosis invaluable - but then I found the objectivity that came with an assessment easier to wrap my head around than making trying to figure out which category of the ICD-10/DSM  my own fuzzy emotions and general thinking fitted into. With the follow-up sessions I've finally accepted that I can't fix myself, but just find ways to manage my day to day life better and my psychologist does have a knack of pointing things out I hadn't considered before. 

    The other thing is cost. NHS takes ages and private can be costly. Like I say, if you don't need to access govt services, not that there's much out there anyway, or don't need your employer to provide adjustments (formal diagnosis helps if things have to get legal), then nothing wrong with self-diagnosis/identifying.

    (If it's any help NAS has a page on the whole process here https://www.autism.org.uk/advice-and-guidance/topics/diagnosis)

    Welcome to the forum btw. 

Children
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