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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

  • Hmm...  This all sounds quite troubling to me and I wonder about this guy's qualifications and ability to do a full autism assessment.  A proper assessment wouldn't consist of a few highly stereotyped questions and, from my experience, would involve an initial AQ10 questionnaire, followed by a more detailed one and then several different professionals over 3 - 4 appointments.  I got 2 male social workers for the first appointment, then two different autism specialists for the second and third, and my older son got a mix of OTs, psychologists and autism specialists.  It then all went to multidisciplinary meetings for the final decisions before our final diagnostic apointments.

    So, from what you say, it sounds as though you might have been fobbed off with this 1/2 hour appointment and that this should be added to your complaint, depending upon where that is in the system.  Was it through the PALs service? 

    I would suggest logging it all while it's fresh in your mind and, as has been suggested, seeking more information on the appropriate pathway in your area (maybe use NICE guideance plus is there an Autism Team that can advise?), putting together a query list and making sure you're accompanied for the next appointment.  

    NB  I must discose my antipathy towards psychiatrists as our family experience has been that they've only had limited training in autism and neurodiversity plus will discharge you as promptly as they can to keep their caseloads down.     

  • in reply to Jenny Butterfly
    Jenny Butterfly said:
    Hmm...  This all sounds quite troubling to me and I wonder about this guy's qualifications and ability to do a full autism assessment.

    It's weird isn't it - the guy is literally the director of my regions mental health services. He's the one that oversees the NHS mental health division for the town + surrounds, is a part of multiple groups that deal with this areas mental health (charity liaison etc) and he's the founder of a local charity here that is supposed to fight against stigma in mental health care...

    I literally do not understand how a person with all of that to their (public) name / linkedin profile etc then treated me how he treated me, but that is exactly what he did. He even told me that he had "done extensive work with ASD people" so I thought "oh wow cool, this is The Guy for this job then" but he followed that up with "and I am not going to do an assessment for you". I asked him why, he told me stereotypical things (like the numbers or trains, or that I appear to be empathetic". I told him that I can't "function in life like a normal human being" and provided examples of that, but being severely impaired wasn't enough for him. I told him about my extremely severe learning disability, but that wasn't enough for him. I told him that as a child I literally couldn't speak for a very long time, but that wasn't enough for him, because I appear to be "intelligent and insightful".

    I told him that according to the tests I've done online I'm exceptionally good at masking / camouflaging. I told him about how for fun I play games like D&D, all of which are about acting out social scenes whilst pretending to be a different person, and I've been doing this for years. I once got completely misdiagnosed with Multiple Personality Disorder (I don't have that at all), because I confused the person trying to work me out when I came in one day and didn't mask, so they assumed I had different personalities in here or something because I was that different. I am good at masking.

    I told him how I literally have friends who I can tell how long I've known them by the name they call me, because every 5 years or so I try to reinvent myself by giving myself a different name and seeing if this new way of acting is the thing that 'fixes my issues' lol, and he just said "lots of people try out different approaches to things". I asked him how many people 'plan out' appointments like this one and he just said "yes, well" and moved on.

    Jenny Butterfly said:
    A proper assessment wouldn't consist of a few highly stereotyped questions and, from my experience, would involve an initial AQ10 questionnaire, followed by a more detailed one and then several different professionals over 3 - 4 appointments.

    Yeah I actually scored pretty badly on the AQ 10 because I took the questions too literally lol. I was assessed by the community mental health team and they were the ones who said "absolutely seek out an ASD assessment, and go private etc if you have to", and they wrote in the notes that how I scored on the quiz did not reflect the actual answers I gave when I spoke about my issues. I don't see the ASD traits in myself basically, but when talking about how I actually function it's pretty glaring. I did the AQ 50 at home and scored a 34 (which is a pretty solid score basically), even though on the AQ 10 I just scored a 5, which isn't enough to refer me (but they did anyway).

    Jenny Butterfly said:
    this should be added to your complaint, depending upon where that is in the system.  Was it through the PALs service? 

    It was not through PALs but through the service which got me the appointment in the first place, via my GP. I've been debating going through PALs but I want to see how this ends first so that I don't go there and he really seriously messes with me out of revenge or something because I caused him actual grief of some kind.

    Jenny Butterfly said:
    I would suggest logging it all while it's fresh in your mind and, as has been suggested, seeking more information on the appropriate pathway in your area (maybe use NICE guideance plus is there an Autism Team that can advise?), putting together a query list and making sure you're accompanied for the next appointment.

    I've not been able to find any mention of an Autism Team but I will look into it. They might be the people who rejected my assessment (via a different pathway than this psychiatrist) because I scored too low on the AQ 10 (I suspect they didn't read the extended notes which basically amount to: This person needs a more detailed test).

    Jenny Butterfly said:
    NB  I must discose my antipathy towards psychiatrists as our family experience has been that they've only had limited training in autism and neurodiversity plus will discharge you as promptly as they can to keep their caseloads down.     

    I am jaded too tbh. I have suffered a lot of medical abuse over my life and running into it again and again really messes me up. I just want to have an assessment - if it says no then that's ok, but I want the chance to at least be heard first or something, you know?

  • in reply to Malfeas
    Malfeas said:
    I was assessed by the community mental health team and they were the ones who said "absolutely seek out an ASD assessment, and go private etc if you have to", and they wrote in the notes that how I scored on the quiz did not reflect the actual answers I gave when I spoke about my issues.

    This approach seems strange to me as, in my younger son's case, the CMHT were able to refer him directly to the Autism Team for an assessment (he didn't take it up for other reasons but that's another story).  So to me it seems a bit negligent for the CMHT to just tell you to "seek out an ASD assessment" because they should either have referred you on or at least signposted you, rather than leaving you to suss it out for yourself.  No doubt they know the lie of the land in your area, even if they haven't had their formal autism training.   

    My GP referred me, then this referral went through the CMHT for initial screening, before going on to the Autism Team and my older son went downt he same route (although we then went privately for him at The Retreat in York because the wait would have been at least 18 months and his university studies were already going very badly).   

    So the route or pathway you've been put on (if it even could be described at a pathway) doesn't seem right to me.  However, I know there are variations between areas so I wonder about asking the local CCG as well as PALS about the pathway in your area.  It seems likely that what's actually happened will fall way short of that.    

  • in reply to Jenny Butterfly

    Just as an afterthought, I had two specific questions for the Autism Team which I asked before my assessment and it occurs to me that you might also want to ask these:

    1.  Does your assessment process allow for non stereotypical presentations, especially for older females and, if so, how? (NB.  This is a major issue nationally and they should be aware of this)

    2.  Is your assessment process able to accomodate people who might have been masking for years (if not decades in my case!) and would you still be able to make a diagnosis? 

    I wasn't expecting to get positive answers but I did!

Reply
  • in reply to Jenny Butterfly

    Just as an afterthought, I had two specific questions for the Autism Team which I asked before my assessment and it occurs to me that you might also want to ask these:

    1.  Does your assessment process allow for non stereotypical presentations, especially for older females and, if so, how? (NB.  This is a major issue nationally and they should be aware of this)

    2.  Is your assessment process able to accomodate people who might have been masking for years (if not decades in my case!) and would you still be able to make a diagnosis? 

    I wasn't expecting to get positive answers but I did!

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