Clinical biases which affect diagnosis accuracy

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Oh dear, that is a sad but hilarious account of the 'nowhere' diagnosis that is Asperger's. No one feels qualified to decide whether or not you have it, and even if you do get the diagnosis, there's no real treatment for it anyway, nor do you qualify for any kind of disability benefits.

I hate that we're just seen as attention-seeking 'trendy' special snowflakes - when the reality is that we slip through the cracks, and struggle to function at all, in a world that not only can't help us, but thinks we're faking our problems.

As for the drug-pushing... I really do think it's a racket, and they profit from keeping everyone dependent on meds.

Ashariel, I am deeply moved by your past suffering, so much so well summarised in your post. I think it will press a button of painful recognition for many people here - you have given voice to something which needs much more recognition.

I have several thoughts in response: the first is that people on the spectrum can't truly begin a healing process until they can give name to what caused their wounds; the second is that every adult will have suffered a degree of emotional harm growing up that will continue to hold them back unless a healing process occurs; the third is that that the particular, structural, emotional abuses which children on the spectrum almost universally experience growing up, and are harmed by, are then construed as individual psychological issues caused by the victim's 'faulty wiring'; the fourth was really provoked by your compelling account.

We all know these days that repeated, unhealed, unrecognised and unsupported trauma can led to PTSD. I would tend to join a few dots not usually joined in relation to that however... persistent shaming and/or invalidation (such as you described, which will be familiar here) is a form of trauma. For humans, it is one of the deepest forms of trauma. I feel very strongly about this issue vis a vis the pain I see and read about here. It makes me so hurt and angry to read this very real pain inflicted on people and then denied, the ignorance (sometimes wilful ignorance) that inflicts so much pain.

Idea number five: I think there is a myth out there in at least part of the clinical world - probably held more than actually articulated by some clinicians - that people on the spectrum don't feel shame (which is complete and utter nonsense) and therefore cannot be harmed by what they are incapable of experiencing... this is the unspoken dehumanisation prejudice, of 'but they are not really fully human'.

Idea number six: true recognition, validation and healing has to come eventually from within the ASD community itself. WP is an ultimate testament to that, since its inception 11 years ago.

In the meantime, we can support one another with validation, recognition, affirmation, kindness and understanding. In the meantime, these are the everyday capacities for shared healing that we have, and they are the healing power and potential that we can share. I do tend to feel sad/exasperated when this healing energy is siphoned off into conflict/pointless debates with NTs who feel compelled to inflict their ideas on this community - despite that we have experienced those ideas for a lifetime, for the most part..

The effect of shame on clinical outcomes is just not spoken of - or if it is, then I haven't been listening well enough.

I really felt for you on a personal level too; I am terribly sorry that you had to go through that and go through such a heavy and isolating burden alone. It really does make me want to weep.

Jessica (if you are still reading here) I continue to think especially about your experience. I wonder if you are familiar with the term "mistaking the map for the territory" (which may be very relevant to your frustrating experience with the clinician you saw). A link on this: http://rationalwiki.org/wiki/Mistaking_ ... _territory

Another issue swirling around in the thoughtspace between my ears today is the difficulty of reconciling the acceptance of humanistic individuality "if you have met one Aspie you have met one Aspie" (a truism to which I subscribe) with acceptance of the clinically rigid diagnostic approach of "one size fits all" (the two ideas are not so easily reconciled, though the cognitive dissonance between them is generally not discussed on WP).

In any field of diagnosis except perhaps motor mechanics diagnosing car problems I would say that one size can never fit all - unlike cars humans are so variable in their genetic constitution and the impacts of experience.

In the (now many threads) opened by people distressed by experiences (like Jezebel's) a common theme is clinicians who obviously [b]do [/b]think in terms of completely inflexible parameters, and if you don't exactly fit their preconception, they may designate you as a fraud, a fantasist or a wannabe...which is immensely distressing.. (I know you are none of these things, Jezebel, don't think that for a moment). Your report of what happened to you is actually very helpful to me in my own thinking about the discounting of the particular subgroup of academically able females like yourself. My speculation today is that this group is perhaps the most likely of all to attract missed or misdiagnosis..

It is beyond bizarre that doctors see this kind of behavior in children and then decide not to investigate.

This post resonated a lot with me. I've developed a fear of doctors, and I may have ruined my back by not getting help in time. I just could not make them listen to me, so I gave up. As a result, I may not be able to go through another pregnancy.

What is very different, is that I first encountered doctors in my twenties. I had a lot of troubles as a teenager, but I was taken to a succession of alternative practitioners, trying homeopathy, kinesology, iridology...you name it, I've tried it.

I am sorry that I am so bad a getting to the point, but I had a feeling that the alternative experience was relevant, and Ashariel's post showed me why. The nice thing about going to an alternative therapist is that they have lots of time, they listen to you, and they very seldom invalidate your feelings. As a result the patient almost always ends up with some kind of diagnosis, even though the diagnosis may have nothing to do with reality, and the treatment has no effect.

I am fairly certain that this was better for my emotional wellbeing than being taken to a doctor and being labelled an attention-seeking hypochondriac, which is what happened later, when I was older and had a stronger sense of self.

It is so difficult to talk to doctors, for a million different reasons. One of the worst is that I come across as very confident and talkative, and that my body language doesn't really show it when I'm in pain. I've been in pain for the last 20 years, how exactly am I supposed to show that my stomach hurts?

Really, the only thing that helped was finally finding a doctor who is open-minded, has a logical mind and realizes that when I research a thing, I am not going for a particular diagnosis - I am exploring the options and asking her professional opinion. Basically, she's realized that I never have standard symptoms, so she doesn't expect it from me, which is a huge relief.

That said, I've found it a useful strategy when having several different problems to space visits to the doctor out over a few months. I don't get immediate help with everything, but it means I am not being a pain so much.

I should be seeing a physiotherapist, but I can not handle it for emotional reasons.

Thanks guys... Yeah, I really wish doctors would ease up on their 'guilty until proven innocent' approach to diagnosis!

I'm working up the courage to go for my initial 'Wellness Exam' sometime next year, and I think I'll just accept that it's the doctor's job to be skeptical, from a scientific standpoint. Until he confirms my various diagnoses with his own methods, he can't just take my word for it, because I could be lying.

So, it might require some lab tests, psychological tests, whatever. But eventually, they might confirm for themselves, the conditions I 'claimed' to have from day one.

Honestly, I was very upset about my experience at first. I wanted answers and left feeling like I'd gotten nowhere. But oddly enough (and maybe this is because I recently started Prozac lol), I actually feel okay now. I'm working on finding a right clinician - that is, one who will actually listen to me and help give me some insight into why I am so different - if it's not ASD, then there's got to be a reason, right? If anything, my experience has strengthened my belief in the fact that the diagnostic criteria is biased towards the traditional model of boys with ASD (and I agree that clinicians are as well). (Before this experience, I wasn't so sure about the whole "girls with ASD present differently" thing but now I'm convinced.) Hopefully others have gotten something positive out of their experiences as well.

Actually there are benefits. It was enough that I said I am seeing a psychologist for social issues and my job center supervisor already started to pay more attention to what type of job offers she gives me (she used to give me a lot of offers requiring good social skills) and she allowed me to visit the office after closing time so I don't have to deal with crowds. She also told me that once I get diagnosis and a grade of disability I will be allowed to apply to "disabled" job offers which have less participators and are quite interesting (for example I seen a IT specialist offer among them some time before and it happens I am soon-to-be IT associate so if I was already "disabled" back then I could apply). And from what my psychologist told me I should get a disability grade without much problem, he was actually surprised when I told him I have none.

Which disability level (grade) do you suspect in your case (mild, moderate or severe)? Who do you want to inform about your disability level and its sort? I think that it may be bad for you when you will receive symbol of disability 02-P (choroby psychiczne - mental illnesses (for example schizophrenia)) instead of 12-C (całościowe zaburzenia rozwoju - pervasive developmental disorders (for example autism spectrum disorders)).

I received first disability level at 08.2015 (moderate with symbol 02-P despite F84.5 (Asperger's) diagnosis), when I was above 23,5 years old. I made poll on Polish AS forum about the level of disability which I should receive. 70% of answers was "none"... I have also other diagnoses than AS (schizotypy and OCD) and get a psychotropic drug. I also received more serious ruling of "total incapacity of work" from Polish Social Insurance Institution last time. I would say that I am just moderate-functioning individual with AS diagnosis (I am so severely impaired to name myself as a high-functioning Aspie). I have serious problems with earning money and "uncapable of normal life". Some people on Polish AS forum suppose that I have schizophrenia. I have no friends and haven't had any occupational job (as an adult I just picked fruits (from my close family's agricultural lands) on summers).