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

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!

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.)

id suspect in eastern countries theyd brush aside any mental illness as a "western made up illness" right?

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.    

This is terrible, I'm encountered this just a few weeks ago with a psychiatrist. I live in Thailand so I cannot point out how to help you. It is pretty common for somewhat high functioning ASD adults to get brushed off.

Thank you very much for your advice and the suggestion about the equal lives organisation, I appreciate that and will look in to it.

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).

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?

Yeah it felt like I was being accused of something in the way he asked it - like I had some sort of ulterior motive and it was really upsetting. I just wanted an assessment to rule things like ASD out / see if I had it so that I could join the groups in my area that help people with ASD (strategies and such for coping with life), but they all require you to have a diagnosis so you can't just roll up to one and sit there quietly. They're very aggressive about this, it's been hard trying to see if I could get in to one.

I was really lucky in that the NAS let me join one of their social groups in my area despite the lack of diagnosis, and I told everyone there when introducing myself I don't have a diagnosis or anything (I want to be honest, sorta thing) but no-one cared at all which was nice. I said to them "it might be that I don't have Autism in the end but I definitely do have ADHD, so even if I'm not a sister I'm still a cousin" and people seemed to like that :)
I kept waiting for the moment where I would realise I was nothing like these people but that moment never arrived. If anything I was really amazed that they understood what I meant when I talked about things that people don't usually have much understanding of - I've never spent any time around any Autistic women, all the people with ASD I know are men and so I felt a bit validated tbh, because they all had empathy and things like me, but 'having empathy' is something that's kinda been used against me when trying to get an assessment and things like this.

I have been dealing with a lot of bad attitudes from people as I've been trying to get help - it's a bit like on one hand they tell you to "go to support groups" for various things (depression etc), then I go there and someone running it tells me "you're not quite suitable for this group", and so I go to get into the groups they said I should go to and it turns out there's a barrier there e.g. diagnostic requirement, so I end up not even being able to access the usual charity-run things in my area. I'm too 'rigid thinking' (or not mentally ill in one specific way that they deal with) for the usual groups, but HOW DARE I try to get into an ASD group even though they're doing things in there that would actually benefit me .e.g. "how to cope with crowds" or something.

It's just an endless loop of DENIED DENIED DENIED and then on top of it some weirdly high ranking psychiatrist decides to add to the mix, so now I do feel depressed except none of the things I feel depressed about are really that weird, so the depression groups still can't help me because I'm reacting to sad things vs being mentally ill, meh.

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.     

I've heard this "why do you want a diagnosis?" thing so much, and it seems to me to be so lacking in awareness.  There are many conditions that can lead to you feeling different and which may make you suspect that you have autism (ADHD, Depression, Bipolar, and many others).  Sometimes people have a combination of several.  It's complex.  The narrower the definition you can give (with certainty) to your own condition, the easier it is to dig out peer-refereed academic papers and authoritative learning from credible sources, and the more you understand, the better you'll be able to navigate the world.

I simply do not 'get' why (to so many doctors) this is apparently hard to understand.  It seems like a statement of the B*%£@ing obvious to me.

Excellent answer. 

everyone in this society is a cynic. so they will be cynical and doubtful of what you say by default.

one majour reason he would be cynical of you, and why he thinks you want something out of a diagnosis, is the rise of welfare based handout society. he naturally would think your only trying to pull this to get free life on disability payments, which really annoys most people in society as ofcourse they have to work and get annoyed by people tryna rip off the system to get out of it on their tax expense. so likely he looked at it that way, its likely everyone trying to be diagnosed is looked on like that, which i guess it may help if you perhaps make out you only want help in life and dont care for the welfare and perhaps sign a agreement contract to not claim welfare after it and basically tell him to shove his welfare up his rear end to shut him up lol

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.

You need to contact your local autism advocate most of them are associated with your local autism board, To make a formal complaint. It doesn't matter that you have got an ASD diagnosis to interact with the autism advocates to ask them for support. If not an organisation called equal lives can assist you. 

Medical gaslighting is common in individuals with autism and ADHD and i would bring someone with you next time. as they are less likely to just dismiss you.