Missed Diagnosis: What the Doctors said to patients

Post Reply New Topic

"Doctor Shopping" is a euphemism which means that a prescription pill addict is seeking another doctor after a previous doctor cut off his medication.

I've never heard it used for people who are seeking a second opinion.

I have always heard and seen the expression "doctor shopping" used in that and similar negative contexts.

I used that term for my mother when she would take me to different doctors for testing because she was trying to get answers to figure out how I functioned and how to teach me. Nothing wrong with it.

I guess it could be derogatory if you accuse someone of trying to get a label because you think they don't even have X but they are trying to get diagnosed with X when in fact they do or someone keeps bouncing from one therapist to another so you tell them they are just doctor shopping because they are telling them something they don't wanna hear. But if they ran into an as*hole therapist, I would still call it doctor shopping when they go try and seek another one but in that context it wouldn't be derogatory unless you mean the doctor just told them the truth and they didn't like it so they are trying to find one who agrees with them.

What a lovely thing synchronicity is! Today I picked up a magazine to read and found an extensive review of a book called "What Patients Say, What Doctors Hear". (written by a doctor named Danielle Offri), and I quote:

... "studies show the average doctor interjects after just 12 seconds". She cites this as an example of her belief that the doctors undervalue the importance of staying silent and actively listening to the patient, and that this failure to listen effectively is the central factor in medical encounters that patients find dispiriting. Listening well, she notes, is a skill, not taught by medical schools/not conferred by earning a medial degree, and less experienced doctors tend to "dismiss patients as poor historians if their narratives aren't amenable to instant classification". Meaning, she says, is co-created, and when it is elusive, the fault is as much the doctor's fault as the patient's.

Two thoughts on this -

Extrapolating from what she writes, patients are more likely to get an accurate diagnosis by using the first 12 seconds to state the most salient reference symptoms consistent with "instant classification". (You'd have to learn them off by heart and practice a lot to meet that timeframe, I'm doubt that I could do it). And even if we could, that's not a complete answer for us, because what if that doctor doesn't know those reference symptoms in terms of AS?

Nevertheless, her advice may have some limited utility for us, for knowledge = power as the old axiom goes...

I was referring specifically to changing doctors/therapists if they are not working well with you. Am also having some vague thoughts about approaching communication in another way.

I also struggle with the fact that I process only half of what the doctor tells me when I am actually there. A few hours later I keep having these epiphanies...."so that's what she meant!" I try to talk it over with my husband, which helps, as two minds work better than one. I've accepted the fact that I might have to go again.

The whole system of doctor appointments is fundamentally flawed, and particularly so for autistics. Add alexithymia, and you have a situation where communication is a struggle for both parties. I wish the whole system was turned on its head, where the patient had to fill out a questionnare before the appointment, answering some basic questions. There is no point in a doctor wasting their time on this. Also, why is there no option for autistics to provide a written list of symptoms and an explanation of what they want from the doctor? I mean, guys, raise your hand if you're better at writing than talking!

If you had a template for describing symptoms, and a section where you write what you hope the doctor can help with, and somewhere to put questions like "Is there any help available for this? Are there tests? Is there someone I could talk to? etc.", would that help you?

As for therapist sessions, I see only two options: bombard said therapist with info on autism, autistic-style, or find another. I am very frustrated with my therapist, although she is a very nice person. She doesn't understand the practical implications of failing at the things I fail at, so she dismisses it as unimportant. Meanwhile, the rest of the world is less tolerant.

It's like a curse, I get on well with people who are well educated, fundamentally nice and whose job it is to be nice to me, so they think I don't have problems. Most people are not like that.

Yes, wholeheartedly agree with you here. I have made lists in the past but seems again they are not interested in them. I can only presume some dont look at what you have spent time on as there will always be a small percentage of the populous that are not on the spectrum, writing things down from blogs/websites to try to con there way in to being on the spectrum. That is the only thought i can think of for not wanting to look at what you have painstakingly written. Autism can be subtle but complex if the individual listening has not had personal experience and i think this is the frustration with many on the spectrum. We can ''pass'' as ''normal'' because we have spent a life time cognitively trying to fit in, hence why there are so many individuals in their late 30's 40's getting diagnosed as they dont have the strength/energy they once used to pass as NT and realise things dont get better but can get worse as one matures... Its also a pain here (in NZ) as i would like to seek a therapist that i can see regularly, but the system here seems to only give you 6 sessions with any individual before you are then passed on to someone else, Sometimes feel like just recording everything with one person and just giving it to the next so as i dont have to go through the same frustrating repeat process like a broken record! Which makes it more difficult if like me are rather a private person and would rather only express these things to one individual rather than a multitude of persons... Also it can be difficult to find answers when one often doesn't know the questions to ask. I constantly find new things that are more associated with the spectrum than the general populous on here, often by accident...

It also amazes me how many thousands if not millions of therapists are out there but we only ever see the odd one or two pop there head in here to get the ''sources'' perspective. Makes no sense, it like going to a crime scene and rather than go to the source they rely on third/fourth party information that had no association with such an event, it makes no sense to me.

Humanity is a very judgmental kettle of fish , even if people dont believe they are and unfortunately it does not matter what minority you belong to there will always be levels of discrimination, then add the herd mentality where someone hears something from someone else and believes it because they heard it from some one else! Even Simon Baron Cohen is subject to this, when in the past he ''assumed'' the ''possibility'' that people on the spectrum dont experience empathy of which the media, professionals etc have taken on as fact only now for him to do a complete 360 and admit we often feel much higher levels of empathy than the ''normal' populous.. But the damage has now been done and means more work, sweat and tears is needed to get the ''real'' message across.

Life is a constant paradox for many on the spectrum and it can be just as disabling as being paraplegic but with a different set of circumstances... If Elon Musk is successful with transferring consciousness into an AI that can be experienced by another human being, it will be Doctors, therapists etc i will be throwing in there first. I guarantee they will then see a very different perspective and i am sure they will not last long before yelling for it to all stop. But this is the difficulties we face. If someone has never experienced such things they can only go by their own experiences which we know are flawed. I see very little empathy from NT's, very little understanding of theory of mind when put in reverse and its fine for them to gain an interest and call themselves an expert but for those on the spectrum it is put into a negative and classed as an obsession. It is ALL these negatives when added up that create the extended difficulties many on the spectrum face because unbeknownst to the NT's that create these class systems they are inadvertently creating more difficulties... Belief, Understanding and Listening are very powerful tools! That seems so simple and effectively are and can change many peoples lives around yet it is the simplest things that are often the hardest messages to get across.

It is a combination of conscious and subconscious experiences with the general population that can often create the co-morbids and if like me remembering a bad experience 30 years ago is like reliving it as if it had happened moments ago.

One simply does ''Not get over it''.

(again just my point of view to some areas)

Along these lines, I always recommend to individuals seeking diagnoses of autism that they need to be their own best advocates. This includes gaining knowledge about autism and its diagnosis, behaviors, characteristics and comorbids. And, yes, it should include a knowledge of how to describe known facts so that the clinician or diagnostician is quickly led down the correct path instead of one where chatting about unrelated topics might doom an accurate diagnosis.

If you have the intelligence to notice things about yourself that a doctor hasn't that doesn't go down well with the doctor,because it challenges his/her presumed intellectual superiority.

When I attended my autism diagnostic assessment, I brought with me a 2-inch stack of documents, photographs, screening-test results and myriad other records about my own survey of my autistic behaviors, characteristics and comorbids based on current research. I knew that I was risking exactly what you described, but, amazingly, my diagnosticians not only agreed with the diagnosis I was seeking, but offered to refund a portion of my fee because I had "done so much of the work" for them.

Over my lifetime, I have challenged physicians when they (and I) have needed it done. A few were insulted, but most thanked me for informing and/or reminding them of my various conditions and how to treat them best. Of course, because of my Medicaid insurance coverage, I attended a lot of interns and other "student" physicians. They were the most thankful for my sharing of knowledge.

Of course, I was only able to do this because of my learning to survey and enjoy reading research studies.

I am now using my "unofficial Ph.D." in caring for my 85-year-old mother who recently experienced her fourth stroke. Yes, my amateur knowledge (I speak conversational medical-ese quite convincingly) allowed me to challenge my university's hospital stroke team of doctors when they "found no evidence of a stroke" during their first morning scrum when she arrived. I followed them into her room and planned to just listen. But, the hospital's pharmacist pointed me out to the lead physician and was referring to me as "...her son, there he is, there he is!" For several minutes, the lead physician let me inform him of my mother's history, recent MRI's of the stroke by another Level 1 hospital and other information.

In challenging them to reconsider discharging her immediately, I finished off by saying that "the information is available if you just ask the previous hospital; meanwhile, if her behavior is quacking like a duck (as in another stroke), let's treat it as one." The lead physician immediately apologized to me in front of his subordinates, and ordered my mother's full-scale admission to the stroke department for three weeks. All that would have been lost if I didn't dare to speak truth to power.

Oh, did I say I have always been pretty precocious (well, at least after I gained control over my elective mutism)?

^ Good for you AspieUtah, you took control and you made sure you were competent.

Thanks.

Yeh, some of them are like that. Luckily though I haven't met too many like this, I think as long as you remain calm and try to list everything as concisely and to the point as possible, they're more likely to listen.

I have a feeling that I may be adding to this thread after my assessment lol

If the assessor says something about ASD that I know not to be to true my instinct is say 'bollox' but I know I'll just accept whatever said as I hate conflict , I can't even say excuse me to someone without feeling like I'm a dick.

When I woke up today, this thought was waiting for me.

1) frame the request for diagnosis in a counter-intuitive way (see below)
2) learn it off by heart before you go, so that
3) you can deliver it more or less within the "12 seconds" before they stop listening.

"My last doctor said he/she thought I might have Aspergers Syndrome. I ignored that, because I was ignorant about it then. But recently someone told me that I've always had the hallmark symptoms: a, b and c; so now I'm seeking a proper assessment. Can you help me with that?"

I know that telling even white lies is not something that most AS people are comfortable with; however the discomfort of that is likely to be less than the distress caused by the immediate invalidations many have experienced in the past.

While I know your road to diagnosis was also a lumpy one AspieUtah, and you really did your homework the second time (good for you!! !) I think you probably have communication and presentation skills honed in the course of your career that few here do, and for them a simpler approach may be more achievable. (I admired your tenacity greatly though).



.

Quite true.

What sort of white lies are you referring to , I was figuring being as honest as possible was the correct route regardless of being invalidated.