TERRIBLE 'diagnosis' experience

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Hi, I hope I'm posting this in the right place.

Soo, I haven't had the easiest of lives. Much of my oddities have always been blamed on this: 'your situation is weird/difficult so obviously there is stuff wrong with you'. Much of the time these 'explanations' didnt make sense to me at all, but hey, it cut me the slack I needed at the time.
Now I'm at a point where I have properly (not only rationally but emotionally too) 'dealt with' the crappy stuff, hoping to finally live my life only to find I'm still weird to everyone else, plus another practical impossibility: I am still constantly tired, not because of 'emotional baggage' but because of TOO MANY FRIGGIN IMPRESSIONS all the time, which make it impossible to get to sleep at night adding to the tiredness problem and... I'm sure many of you know what I'm getting at. Anyhow...

So, people asked me if I was sure I wasn't autistic, looked in to it, dismissed it at first because the 'external observations' such as 'socially inept' and 'no theory of mind' seem not to apply to me, but when I think about the mechanisms that lead to such impressions it suddenly makes loads of sense. I read the 'Aspergirl' book and see a lot of me in it.
I am seeking diagnosis mostly to get my suspicious confirmed (or ruled out with proper motivation), and so I can provide a bit of direction to those who experience difficulties relating to me.

My first talk was okay. They wanted to know why I was there etc and I explained the above and that all my weirdness was always blamed on 'difficult circumstances', but that I'd like them to look at _me_ for a change, not 'events in my life'.

-- so here the 'fun' begins

Today I had a meeting with someone else which was called the 'diagnosis' appointment. I will admit I didnt particularly like this man from the start but I knew why I was there so I tried to work with it. He asked a few too open questions so I had no bearings on what he was getting at and I was rather tired so the whole situation was very confusing to me. I will admit this was not my finest moment of conciseness, but the fact that he kept not understanding what I was trying to say made me explain more which he found even fuzzier and.. the spiralling down had begun.

He then spent most of the hour on getting me to explain whether I had talked to therapists before. About a particular life event in which people failed to listen to me he concluded 'oh so you just had to get your way' and I was accused of 'not being willing to admit things' while I was trying hard to provide every possible kind of information. I did point out that this interaction was particularly difficult and that this surprised me because the talk with his colleague was fairly smooth, but that only led to him insisting that 'he is like everyone else so I must lack interaction skills'. I do not have this degree of difficulty interacting with anyone else but he dismissed that.
At this point I was panicking, as I was not being heard in a situation where that was key. Explaining that only led to being accused of making assumptions, while I was merely trying to convey why this situation was scary to me.
When I tried to tell him an anecdote about my daughter that (imo) illustrated her problems with change, which I recognised as also typical for me (only I dont tantrum over it anymore ) he stopped me and went back to his 'confirming that I had life trouble', a fact I have been nothing but open about. He did NOT ask me whether any of the life-situations were still bothering me. The only thing that remains a problem is more 'being treated like the above'.

NOTHING in this conversation in which I could recognise checking for AS criteria. He seemed to have decided beforehand that I must be paranoid due to my life and was not interested in my experience at all.

He did say he didn't think I have AS but I am rather certain that the above is not a useful basis for ruling it out. At that point I simply wanted to get away from that place so I went with 'fine, bye'.

--

I'm simply flabbergasted. Yes I was very tired and more vague than usual but aren't these people supposed to be able to 'work around that' or something? Whether I qualify as AS or not, this is not a constructive way to approach someone.

In two days I will have another talk with the lady with whom I met before, but now I worry that she won't listen to me anymore and just go with her colleagues (biased) views. GAH

I do have the option of getting a second opinion but I'll need to somehow 'handle' this first. So far no sleep for me, completely wound up over this, obviously.

Surely they can't be all like this?

I enjoyed my appointments with the psychologist who diagnosed me, but I had it a bit different. My mom and I went to my pediatrician and brought up my sensory problems and he said "just from spending 5 minutes with you it looks like high functioning autism". So he referred us to a psychologist and I had 2 appointments with her and got diagnosed with aspergers. At the first apointment psychologist talked with my parents about me and my history, then the psychologist talked to me, at the second appointment I took a IQ test.

Unfortunately, this seems to be an all too common occurence from what I've been reading. Has this person (is he a psychiatrist? psychologist?) had much experience with not just adults on the spectrum, but female adults?

It took me a very long time to go for a diagnostic assessment for exactly this reason - fear of not being heard properly and dismissed. People, trained or not, tend to see what they expect to see - and if this guy expects to see issues related to 'life troubles' that's what he'll see, and will ignore anything that doesn't fit into his hypothesis.

If AS is going to be ruled out, it at least needs to be fully and seriously considered. The only way, I think, to successfully sidestep a 'false negative' diagnosis (i.e. being told you don't have AS even if you do) is to see someone who has a lot of experience with female adults on the spectrum. If this guy doesn't qualify, there is no way he's going to be able to 'work around' anything.

What may be a great help is if you spend some time typing out exactly what your current issues are, why you think you may have AS, and why it is important to you to explore this possibility. Take your time, check it over, leave it for a while, then come back and read it again to make sure it's got in it just what you want to say. Then print it out and hand it over during a consultation. It doesn't sound like this guy would be too open to reading it, but any good professional whose job it is to diagnose these things would. The person who diagnosed me apparently found what I wrote very helpful and included it in my file. It certainly overcomes the problem of not being able to say what you want in your alloted time slot (I often go off on tangents and forget the point I'm trying to make).

Anyway, just a suggestion, but it helped me. Also the person who diagnosed me had had a lot of experience with adult females with AS, and that helped a huge amount.

OP, from your description it seems the psychologist came into the room with a mental picture of who you "ought to" be, and was trying to get you to conform to that mental picture. Get a second opinion. Whether you have AS or not, he wasn't any good at communicating with you; or if he was good at listening, he wasn't any good at informing you that you were being heard. Whether that was a doctor/patient mismatch or whether he's just a crappy psychologist is anybody's guess.

But your feeling like you weren't being listened to was probably correct. He wasn't listening to anything that didn't confirm the theories he already had; and it looks like he was spending a lot of time trying to put you into your "proper role" as the mental patient, with him as the authority figure who was going to make everything better just as long as you did everything he said. Some psychologists don't yet understand that the more the patient is able to deal with their own problems and take control of their own lives, the better they recover.

I won't deny I've got some preconceptions of my own coming into this, because it fits very neatly into a pattern that I've seen in several other professionals I've had the misfortune of dealing with. Because I don't have direct experiences with this particular one, I can't tell you for sure that this is the mistake he's making. It's like they've got this array of patient images in their heads, and each image has all the details on it; and when they meet a new patient they take that person and fit him to the closest image, and then ignore everything that doesn't fit the image, and interact with the patient as though they were that mental image.

The more a psychologist falls into that trap, the less they can actually communicate with the person he's supposed to be evaluating. It doesn't help that there's a huge power gap between a psychologist and a patient, and he's assumed to know better than the patient by default. That makes it all the easier for the psychologist not to question whether his ideas about his patient are correct. And if he doesn't question, then he can end up treating not the patients in his office, but the patients in his head. A bad situation all around. It can lead to a psychologist having a pet diagnosis that he gives to everybody (and yeah, they can have Asperger's as a pet diagnosis, to complicate things even further); or it can cause them to tack onto any fact about you a half-dozen assumptions that may or may not also be true, but which they don't take the time to question. It can turn good professionals into truly horrible ones--and without them even realizing how much damage they're doing.

Last edited by Callista on 18 Apr 2012, 3:44 am, edited 1 time in total.

I would definatly ask for a second opinion and i would find out who your nearest specialist is in AS,and i mean proper Aspergers specialist , most specialist in this field can actually tell if you have AS almost imediatley alot of the time - just by your manerisms . Ask your GP to refer you - you may find that you will have to look outside of your area - if thats the case your GP will have to ask for local funding .

I hope you get some answers and its not as tramatic as that meeting. I know girls with AS show AS differently , both my daughters have it and can easliy make friends - its keeping them thats the problem and not understanding certain socialness ... they think they do but it eventually leads to problems.

Thank you all for hearing me. That's the main thing that was lacking from this interaction.
I'd love to get into some of your responses in more detail but I find that I'm still too upset over how this went down. More digesting required :s

I'll be back

In the mean time, if anyone else has experiences to share about being misunderstood and perhaps how you finally managed to be heard, I'd love to hear them.

Thanks!

You should go and find something you like to do, and do that, so you don't have to think about this for a while. It'll be easier to deal with once you've put some time between you.

I had the followup chat and to my relief they agreed to dismiss this abomination of a meeting from the record. I'll have another one with someone else in little over a month. I could explain fairly well what went wrong and why focusing on this topic and his responses were amplifying my panic/discomfort and thus my ability to respond.

For the next 'attempt' I intend to collect and document examples and I will presentify my data collection that led me to seek out the diagnosis in the first place AND the 'ok life was rollercoaster ride but can we plx look at the passenger (you know, ME) for a change' story so worst-case I can go 'THIS, good luck' and not say anything else

Now I'm well beyond tired/over-everything'd, so I'll be hiding for a bit...

Right, so I went back last week. Can't say I was very impressed with how this new person handled it, but at least we didn't mutually amplify misunderstandings.

She asked a few basics about my life and immediately went to 'ooh so things have been difficult for you then'. Upon my insistence she did return to the 'diagnosing' which consisted of literally asking me about the DSM criteria and accepting each initial "I'm not sure if this is what they mean by that, but I do this, I find this difficult, ..." without further comments or asking for more/different examples.

The most ridiculous question she asked was if I wasn't autistic. This made my head short-circuit in a 'say whut?' kind of way. The first time around I managed to reply 'if you mean the DSM version then no, no language delay'. Later in the conversation she asked this again and this time I went with "Well, it's a spectrum right? To my understanding Asperger is an ASS and there are plenty of people who consider Asperger and HFA to be the same, so what definition am I responding to here?".

She then went on to conclude 'Mm yes well mm you meet the criteria but really this life-foo blah blah blah'. This was frustrating to me because I had extensively told her colleague about how my life-foo has had TOO MUCH attention already and that I am really fed up with these dead horses being pulled into the whole thing. Yes there were crappy situations but that does not mean we don't have to look at who I _am_, how I work and how this affects my life.

This lady had NO clue whatsoever about the girl/woman specifics in this context and, based on me apparently not coming across _that_ weird, wrote me up as 'mild'. While I agree I'm not the most severe of cases - I manage living on my own and caring for my daughter just fine, only employment is proving tricky so now I'm looking for some confirmation on my own research into how I really work while _not_ trying to live up to standards for a change - I feel this cannot be properly determined by someone who doesn't know about how well we play our socially acceptable 'parts'.

She did eventually agree to sign off on the diagnosis though (yes... I guess you do meet the criteria... mmm), and based on that I'll get to talk to someone else who seemed much more open/friendly about which areas of my life could use some improvement and how to go about that.

However if I hadn't done my homework and been quite sure myself this would have been another visit to the over-familiar dead end, which reminds me yet again of the utter uselessness of the vast majority of 'professional help'. I am baffled by how little she 'investigated' my life and obviously this makes the whole thing feel like it wasn't a 'proper' diagnosis, as in _they_ are supposed to be the expert right? Not I? (Although a bit of 'special interest' fueled research really goes a looooooong way )

I guess in a purely practical sense the main 'formal diagnosis' motivation, next to _maybe_ getting more useful help, is the ability to go 'this is just how I work, if you want to read up on it, it has a name' in a way that is more about _me_ than the 'ooh yes your circumstances were crappy and now you are messed up' excuse people always default to. I doubt I'll ever say it exactly as such, but having the option is nice.

Next to that a bit of recognition that not everything boils down to 'circumstances' is welcome. In that respect this meeting was utterly useless, but the more understanding lady that also dismissed the weird confirmation bias meeting does seem to see things my way. Yay


So, another 'worst diagnostician in the world' story, but for now it serves my purposes...

This guy is not only a bad psychiatrist. He's a complete as*hole.

With regard to:

There's some research right now that correlates autism with intestinal problems.

http://ebm.rsmjournals.com/content/228/6/639.full

As far as I know (I'm not a doctor), usually those intestinal problems lead to a low absortion of minerals, specially iron. And low levels of iron makes any person much more exhausted.

http://www.ncbi.nlm.nih.gov/pubmed/21643649

http://questioning-answers.blogspot.com ... utism.html

http://www.drbriffa.com/2007/08/31/the- ... en-missed/

I have been exhausted for years, and I thought it was due to bad sleeping (I sleep really bad). Since I'm taking supplements I'm feeling much better.

I would recommend to you a blood analysis to check ferritin levels.

Yes, argh.

As pointed out by several people in this thread: My Facade is slipping... I have become fairly good at keeping up appearances and was doubting if I could get a diagnosis because of that. Turns out that was a fairly accurate estimation, only I sufficiently managed to redirect her focus to the issue at hand.

So 'yay' my own conclusions have been formally backed up, only it feels very fake because I know how little insight she really had. Gah



Thanks for your suggestion

I actually did exactly that a while back. I only qualified as 'too low' for vitamin D, but my ferritin was indeed at 'barely okay' level and I was also fairly low in the B12 range. A friend told me her experience was that she feels much better when her values in that area are closer to the max. I'm (carefully) experimenting with supplements to see if this could help me too.

Given that my reactions to something as innocent as melatonin are quite strong (I fall asleep but when I wake up ~2 hours later as I always do I feel very nauseous) I wouldn't be surprised if my 'just right' in the vitamin/mineral department turns out to be a bit more specific than the 'for everyone' scale.

It's encouraging to hear that this made a difference for you

I know perfectly what you say. Let me quote myself, just one day ago and before reading this thread or the one you linked: "It could appear that not having very 'visible' symptoms is a gift. Well, probably it's better than having them, but it brings its own problems too: if you look normal, you're supposed to be normal. So any reference to any problem, difficulty or just difference causes skepticism. You don't get the 'crazy' stigma, but instead of it you get the 'moaner' one. And at the end you just give up and don't talk about it because, holy god, you become exhausted of trying to explain the same again and again. It's like banging your head against a brick wall."

A couples of weeks ago I was talking about it. When I was asked 'Then, what do you do? do you pretend the whole time?'. And yes, this is the truth: at the end it's just pretending the whole time. Nothing bad at it: people just need to feel comfortable and you just give them that.

But sometimes it feels unfair. You learn to behave like a normal NT, you learn how a NT thinks, how a NT feels, what he or she needs and you assume that in case there's a conflict, it's because you didn't learn to adapt well enough, so you must do it better. And the only thing you ask in exchange is understanding that even if you look normal, because you try hard to look normal, your mind is different. You're different! And no way...



It did. But it doesn't solve everything. It's only, as Pink Floyd said, another brick in the wall. But at least in the good sense.

Indeed. For the past year I've been relearning what it is like to be me, as I had exhausted all other options and burned out. With most social obligations gone, it turns out I like 'being me' quite a lot
In this quest for 'how can I function better' I've found that although I generally get through these situations just fine, being social is one of my major energy drains, along with various sensory issues of course. This has led me to revisit my always-disregarded-by-therapists complaint of 'it feels fake' and ended up here. No wonder I haven't fully recovered yet: the 'excess' energy I manage to preserve by not working is measured in drops, not in buckets...

..which I then spend on the quest, obviously. It's become a special interest in its own right /o\

I seems to be a useful investment though. By getting some more perspective on how exactly various issues affect me I will be able to manage them better, and I think I've made some headway already

Yeap, I have the same feeling. Socializing, even when it's managed conveniently, is a drain of energy. NT people just go out and join friends to relax. I can't. That doesn't mean that I don't enjoy it, I learnt to do so, but it's like playing a match: even if you enjoy it, you finish exhausted. There's people who can be surrounded by other people. I can't: I have to be thinking the whole time about how to behave, how to talk, how to handle it the whole time. Being alone, even if it doesn't make the happiest moment, it makes the most relaxing ones. And when you don't sleep well and don't get really relaxed in company of other people, keeping energy becomes a priority.

Specially because there's not a 'standard' excuse for being exhausted. I have been told, in some moments of my life, that I always looked exhausted. And I must improvise and give a credible explanation. I always hated the summer and liked the winter. When I was asked 'why that? I answered: during the winter it's cold: I can sleep. That's more important than a blue sky.

That remains me that it happens a very funny and (at the same time) bizarre thing: you can't be really honest because NT people don't understand (or don't want to) how you feel. I have said for years that I suffered imsonia, what it's not exactly true (bad sleeping is just one of the ways energy is drained). But 'imsomnia' is something 'normal', known, easy to accept. At the end you just give easy answers, because people need easy answers. People need to be in a safe, known environment, with nothing out of order. An asperger mind is interesting, different, but it's strange, not understandable, not easy. Sometimes I feel like I was protecting 'normal' people from the 'real me'.



Yeap, when I accepted I had asperger (and I'm talking about weeks, months at its maximum), asperger became an special interest by itself. I have to try hard to not to speak to people who knows about it the whole time!! ! But the perspective you get is much more real. I never had the feeling that psychology worked. When I read about asperger, I have this feeling: it makes sense, it works, it makes a headway.