Missed Diagnosis: What the Doctors said to patients

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Over the years, we have seen each of the responses reported in the link on Wrong Planet, when adults seeking diagnosis are rapidly met with disbelief and denial by doctors but as far as I know, we have never seen them all in one place, collected as verbatim reports from so many. I think it's an excellent summary, though it makes for sad reading that people are treated in such arrogant and ignorant ways by trusted professionals. The responses apply to men too, (as we know from feedback from WP members).

https://everydayaspie.wordpress.com/201 ... -in-women/

Quote: "You can't be autistic because you felt sad when your grandmother died".

This list of responses was great. It's important to document this, I think. This needs to get back to the medical community.

I once went to a therapist and talked about light sensitivity causing me anxiety. At the time I knew nothing about autism, or that sensory sensitivities was a thing at all, I was just really freaked out by light levels in spring. It gets me every year. He laughed superciliously and asked me if my anxiety wasn't really caused by various life factors. The thing is, those life factors are the same all year; they don't magically get worse in spring. I never went back to him. The pompous arse writes texbooks for psychology students.

What is so bad about it is that sensory sensitivities is not even exclusively an autistic thing. ADHD people have them too, and various neurological and physical conditions. He should at least have asked me to see my doctor about it.

I was told by a psychologist that I couldn't possibly be Autistic because I was happily married with children which showed that I was capable of forming lasting meaningful relationships.

No matter how many times I read accounts such as yours, I still feel a pang of sadness every time (Oh but wait, that's empathy, so I can't be a real AS person after all...)

The first doctor I told simply laughed in my face. The second said: I think I am too (and he meant it, and I think he really is).

It has to be rough being told things like that.

I told a psychiatrist that I'm afraid of people looking at me in the public transport and consider suicide. He told me nothing, kept prescribing pills that only made it worse. Finally I asked him what was the diagnosis and he said schizophrenia. Because I kept talking about other people making me anxious by looking at me.

Changed the doc. The diagnosis was switched from schizophrenia to depression and (social) anxiety. Got the right pills for those and got better.

Started meeting a therapist. Then she told me all my difficulties and strengths fit a keyword: AS. I was first surprised, then it all started to make sense.

Went back to the doc. He told me that AS is just fashionable and overdiagnosed :/ "Don't you understand social situations?" - he laughed and made me unable to respond

SaveFerris, from reports on WP, and on blogs I follow, I can't discern any green shoots of improvement to date.

Part of the problem is the way doctors are trained to think of "horses not zebras". This is a metaphor actually used to teach medical students:

"when you hear hoofbeats, think horses not zebras".

In other words, choose a commonplace explanation, not an unusual one, to explain symptoms. So the zebras get mislabelled as horses; their zebra-specific concerns get ignored; likewise, people with rare medical illnesses are very commonly misdiagnosed with common ones, and no-one is looking out for, or looking after the zebras as zebras.

We are zebras, in terms of that heuristic.

Many of us here will identify with what you describe. I certainly do, as an AS person with uncommon, chronic medical conditions (coeliac disease, immune deficiency, MGUS) = zebra conditions, which impact on the common-or-garden transient horse conditions I present with, like chest infections. They treat the infection with antibiotics and ignore the flares of inflammation reaction throughout my body that infection causes, which is just as dangerous and sometimes more so.

The only positive aspect of this is that I have taught myself a lot in terms of self care during illness, because I had to.

Excerpt from Wikipedia:

Zebra is the American medical slang for arriving at an exotic medical diagnosis when a more commonplace explanation is more likely.[1] It is shorthand for the aphorism coined in the late 1940s by Dr. Theodore Woodward, professor at the University of Maryland School of Medicine, who instructed his medical interns: "When you hear hoofbeats, think of horses not zebras".[2] Since horses are common in Maryland while zebras are relatively rare, logically one could confidently guess that an animal making hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.[3]

As explained by Sotos,[4] medical novices are predisposed to make rare diagnoses because of (a) the availability heuristic ("events more easily remembered are judged more probable") and (b) the phenomenon first enunciated in Rhetorica ad Herennium (circa 85 BC), "the striking and the novel stay longer in the mind." Thus, the aphorism is an important caution against these biases when teaching medical students to weigh medical evidence.

Diagnosticians have noted, however, that "zebra"-type diagnoses must nonetheless be held in mind until the evidence conclusively rules them out: In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning. The pertinent question is whether the disease is present or not. Whether it is rare or common does not change the odds in a single patient. ... If the diagnosis can be made on the basis of specific criteria, then these criteria are either fulfilled or not fulfilled. — A. McGehee Harvey, James Bordley II, Jeremiah Barondess[5]

(emphasis added by me)
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I believe our new family doctor is autistic. He's classic; the dark stare, the monotone voice, major eye contact issues, etc. Some of the moms detest him because they believe he doesn't care. I talked to a teacher who is one of these super-empathic NTs who can communicate with anyone. She said he always took great care of her kids and he was never cheap about sending them to specialists when he wasn't certain.

I understand about probability case by case. Which is why doctors ought to check a hypothesis instead of just assuming. I guess it always boils down to time and money.

About autism, about medical conditions: What do you do when your doctor has told you you are welll/you just have to learn to live with it/it's quite common, and the things that bother you just keep piling up? Where do you find the strength and the executive functioning to deal with it? It's just another five additions to an already too long to-do list.

I get more rest than most people need (because I need more). Sometimes when I am feeling emotionally depleted or stressed, I don't seek medical help even when I need it, because of the extra stress of seeking it. I have started a blog recently about Health Matters for Asperger's Syndrome Women, and just giving voice to the issues here, and there, helps.

I had a psychiatrist tell me I wasn't autistic, I was just bipolar because I refused to take the medication he wanted to throw at me before getting to know me a little or telling me about the medication. He said he could commit me to a mental hospital where they would MAKE me take it. I wasn't a threat to anyone so I knew that wasn't true and I told him so. He supposedly had a child with Asperger's (which I didn't believe for a minute). I think he was just a narcissist with an authoritarian complex who wasn't used to being challenged. My mother happened to be with me and she said I was diagnosed with autism since I was a child. He said my diagnosis needed to be changed. I just got up and left. After we left, my mom basically told me I should have just let him stand there and lord over me...Um no. Autistic or not, I'm still a human being and don't have to be put up with being bullied by people like that. He did say some things that I personally found offensive. Like I said, I just don't think he was used to his authority being challenged.

I've been told I was Schizoid, Schizoaffective, Bipolar(I have none of them). Been told my difficulties were "just social anxiety, just OCD". Been told in grade 1 assessment by a psychologist that "he just learns differently".

When the first autism assessment where I was diagnosed with Asperger's the assessor was baffled for how every health professional could have missed it when the signs were all there. She stated my childhood was a textbook example of someone with Asperger's, having learning difficulties in grade 1(central auditory processing disorder) and by grade 3 be considered "gifted". The poor social skills, poor eye contact, introverted poor motor skills, the repetitive and restrictive behaviour, meltdowns, even the common comorbids of epilepsy and bowel problems were all there.