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"Why do you want a diagnosis anyway?" and other things

Malfeas

Heya guys, I just want to talk for a moment about what's been going on as there isn't really a place for me to go over this and get opinions from people who might get it.

So, I'm a 'somewhat older' woman who was diagnosed with ADHD last year. After a fair amount of time doing very well on the medication, I realised that the problems I am having in life go quite far beyond how ADHD can mess you up, and so I have been looking to get an Autism assessment. The NAS is currently pretty fully booked so I tried my luck with the NHS, and it's not been great :/

I was mistreated by a service that is supposed to help patients get signposted to different places, and as an apology they got me an appointment with a Psychiatrist. Not just any Psychiatrist, but the guy who is apparently in charge of Mental Health for my region. That was very unexpected, but here we are.
I went to my appointment with this guy and I told him about the ADHD, the process of diagnosis, my (positive) response to the medication, my current problems, and the guy pretty much immediately starts casting doubt on the things I'm saying.

When we got to the question of him doing an ASD assessment for me, he refused for multiple reasons. He said that he has 'worked with Autistic people' and that I "may have traits, but don't seem Autistic" to him. Earlier in the session (before we got to the ASD thing) he said "I can tell you're Neurodivergent, have you ever noticed the way you talk differs to others?" and things like this - so I started to argue with him as to why I should be given an assessment, seeing as I am apparently so Neurodivergent he can mystically hear it in how I talk to him.

He challenged my ADHD diagnosis (and the medication I am on for it), which is a threat to me because getting that diagnosis + medication was extremely difficult, and so someone threatening to mess with me like that is a direct attack from my point of view, but he didn't see it like that. It was no big deal to him - he didn't care that I poured blood, sweat and tears into brute-forcing my way through to an ADHD assessment, paying for it privately out of necessity in the end, and fighting dozens of NHS doctors along the way who each did something uniquely horrific to me - they mainly accused me of wanting the diagnosis for the medication and things like this, but they all did it in such horrible and spiteful ways :/
He said he wanted to take me off my medication so he could "see how I respond to anti-depressants" (I told him I wasn't depressed and that they didn't work on me, but he.. argued with me that I was depressed? I don't get it). I argued with him some more and told him he wasn't going to take me off my ADHD medication, and he relented because I was getting really worked up by this point. If he really did know the things he (went on at length) claimed to know, then he probably saw me on the cliff-edge of a meltdown and it probably wouldn't have been a passive one. I was waving my arms around all over the place and crying as he sat there arguing with me about the many reasons I shouldn't be assessed for Autism.

I asked him again just to do the ASD assessment to rule it out if he wasn't sure if it was "just the ADHD" or something. He asked me a bunch of really awful and stereotypical-sounding questions e.g. "do you like trains", "do you like numbers", which I said no to (I'm a woman with a maths based learning disability, no I do not like these things really), and he basically used that as his "gotcha" to go to me "see, you're not Autistic", and then he refused to do my assessment again. He says to me, "why do you want a diagnosis anyway? Ok you'll know yourself better, but it won't do anything for you", and I said "you're wrong, it'll allow me to get into the support groups who only accept people with a diagnosis, and I can get the things I need to make any jobs I get better to work in" and so on, but he just kind of groaned and I think he thought I was trying to 'get something' out of getting a diagnosis - in a shady way, like he asked me if I was "deliberately not making eye contact" and his entire attitude can be summed up like this: "I am on to you" Disappointed, except I'm not actually hiding anything. There's nothing to discover other than that which I am asking him to discover anyway. I don't get it.

It took me like, 2 weeks to realise he'd been horrible to me instead of just 'perplexing' (I couldn't / can't understand why he refused my assessment). The things he said have been really seriously rattling around in my brain since then and I can't get them out - it's like an echo of him is a mini-voice in my head just jumping in front of all my normal thoughts and repeating the things he said to me. I can stop thinking about what he said for a while maybe if I e.g. paint some Warhammer, but then it just comes back in huge floods of emotion and I can't seem to move past them. A long time ago when I was very much depressed all the time, I had a really horrible internal voice (it was me, hating on myself), and I did actually get over that in time - but now I feel like that negative self-talk thing is back but instead of me, it's him and the other doctors I've had to endure all saying the shitty things they said to me on repeat.

There was a lot more things that he said to me than what I put here (my appointment lasted for about 30 mins, and he was saying things for 90% of that time that were awful in retrospect). Does anyone have any opinions on any of this?

I have to see this guy one more time before he'll refer me to someone else and I'm scared of what bullshit he'll try next. I also don't know what to say to him when I have to go back there, nor why he is demanding I come back for a 3rd time (or be discharged completely from seeing other NHS psychiatrists). I can't get an advocate because they all just advocate for elderly people around here (I already asked), so I'm on my own (that's ok). Does anyone have any survival strategies / counterpoints for someone who is very stereotypically-minded / arrogant / egotistical and convinced he's 'right?'. I don't want to win an argument against him because there is no winning with someone like this, but I refuse to just let him walk all over me again, the guy is really shitty (he seems so nice when you talk to him though, it makes you believe he's saying these mean things 'to be kind' or something) and also really powerful, and I guess I just want some self-defence tips or something. 

I feel like I can't get over how unjust it is that he did this to me but I've already complained and I have no idea what will happen as a result of that. I am assuming I'm going to get in there and find out the hard way.

Parents
  • Malfeas said:
    Does anyone have any survival strategies / counterpoints for someone who is very stereotypically-minded / arrogant / egotistical and convinced he's 'right?'.

    Google scholar and sci-hub. There is no way an experienced doctor who's mind is in a grove about what's going on is going to be shaken out of that grove by a patient's opinion. However if you can quote academic authorities that contradict his assumption (eg autistic people all like trains and numbers) that will make him think. Have you taken the AQ10 test? If not go find it online and take it. It sucks that you have to go do your own medical research but if this guy is effectively the gate keeper to the help you need I don't see much other option.

    Also as you do your research be open to the possibility he may be right. Do the reading look at the evidence confirm it for yourself. If nothing else spending hours reading through research papers to win an argument must be one of the most stereotypically autistic things posable.

  • in reply to Peter
    Peter said:
    Have you taken the AQ10 test? If not go find it online and take it.

    I have done that test and I struggle to do it - the questions are really difficult for me to answer because I take them too literally (I have done this with the community mental health team). I only scored a 5 when I did it with them, but the woman told me I was scoring myself incorrectly vs what I was actually telling her. My problem with it is, when it says things like e.g. "do you collect categories of information", I answer "no" because from my point of view I don't do that even though I do, I just don't see it as 'collecting categories of information', and so on.

    On the AQ 50 I got a score of 34 though which indicates full-on Autism rather than just traits, so it seems with me I am not 100% straight forward, which is not surprising to me considering how the AQ is worded in general. I think I would get on better with the DISCO assessment because it does not make a lot of these assumptions and the questions seem a lot more specific - I tried that one out and I was able to answer those without having to puzzle out "but what is this really asking" lol.

    Peter said:
    Also as you do your research be open to the possibility he may be right. Do the reading look at the evidence confirm it for yourself. If nothing else spending hours reading through research papers to win an argument must be one of the most stereotypically autistic things posable.

    I've been doing so much research, mainly because of how difficult it is to narrow down what ASD looks like in an adult woman who has been living life undiagnosed for 36+ years etc. From what I've found, I'm not that unusual for women with ASD, in that I have become incredibly good at Masking, so it becomes very difficult to really work out what is 'me' and what is a construct. I also want to avoid the pitfall of "I am thinking about this, so therefore I am subconsciously adopting traits from things I have read" because damn I got a lot of that with the ADHD - Turbo Imposter Syndrome can honestly just f**k off at this point, I hate the second-guessing and self-gaslighting that comes with this sort of investigation, you know?

    I am open to the possibility this person is right in that I don't have ASD (which is why I am not going around self diagnosing myself for example), however I want an assessment before someone just writes me off like he did. The waiting list is 5 years in my area and if this guy who is perfectly capable of doing an assessment, refuses to do one because of his weird stubbornness then I'm going to be in my 40's before I find out I have ASD or not (unless I can find the money to get an assessment done privately, but it's expensive).

Reply
  • in reply to Peter
    Peter said:
    Have you taken the AQ10 test? If not go find it online and take it.

    I have done that test and I struggle to do it - the questions are really difficult for me to answer because I take them too literally (I have done this with the community mental health team). I only scored a 5 when I did it with them, but the woman told me I was scoring myself incorrectly vs what I was actually telling her. My problem with it is, when it says things like e.g. "do you collect categories of information", I answer "no" because from my point of view I don't do that even though I do, I just don't see it as 'collecting categories of information', and so on.

    On the AQ 50 I got a score of 34 though which indicates full-on Autism rather than just traits, so it seems with me I am not 100% straight forward, which is not surprising to me considering how the AQ is worded in general. I think I would get on better with the DISCO assessment because it does not make a lot of these assumptions and the questions seem a lot more specific - I tried that one out and I was able to answer those without having to puzzle out "but what is this really asking" lol.

    Peter said:
    Also as you do your research be open to the possibility he may be right. Do the reading look at the evidence confirm it for yourself. If nothing else spending hours reading through research papers to win an argument must be one of the most stereotypically autistic things posable.

    I've been doing so much research, mainly because of how difficult it is to narrow down what ASD looks like in an adult woman who has been living life undiagnosed for 36+ years etc. From what I've found, I'm not that unusual for women with ASD, in that I have become incredibly good at Masking, so it becomes very difficult to really work out what is 'me' and what is a construct. I also want to avoid the pitfall of "I am thinking about this, so therefore I am subconsciously adopting traits from things I have read" because damn I got a lot of that with the ADHD - Turbo Imposter Syndrome can honestly just f**k off at this point, I hate the second-guessing and self-gaslighting that comes with this sort of investigation, you know?

    I am open to the possibility this person is right in that I don't have ASD (which is why I am not going around self diagnosing myself for example), however I want an assessment before someone just writes me off like he did. The waiting list is 5 years in my area and if this guy who is perfectly capable of doing an assessment, refuses to do one because of his weird stubbornness then I'm going to be in my 40's before I find out I have ASD or not (unless I can find the money to get an assessment done privately, but it's expensive).

Children
  • in reply to Malfeas
    Malfeas said:
    The waiting list is 5 years in my area and if this guy who is perfectly capable of doing an assessment, refuses to do one because of his weird stubbornness then I'm going to be in my 40's before I find out I have ASD or not (unless I can find the money to get an assessment done privately, but it's expensive).

    I think you might be better off having an open minded doctor do your assessment anyway. As I understand it it's not quite as easy as just following a hugely complex flowchart. The assessor has to make some what subjective judgments in the process about your responses and generally this requires a degree of special training. Your specialist may have done a version of this training but I bet it was a long time ago and he probably hasn't used it much since.

    As frustrating as it is you may have to wait. Unless you have a pressing need (eg autism causing issues at work) in which case maybe you can get things fast tracked? (which can still be rather slow I think.)