Missed Diagnosis: What the Doctors said to patients

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The reasons given for not giving a diagnosis seem to fall into three categories:

1) A diagnosis won't help the patient, even though it might be correct
2) The patient is not sufficiently impaired for a diagnosis
3) Miscellaneous brain junk that misinformed doctors carry around

As for 1) it's not certain the doctor is always right about that. About 2), it's not something that someone can make a snap judgment about unless the doctor knows a lot of things about the patient's private life. And 3)....I mean, really? I've heard so many idiotic things from doctors over the years that I feel that they should at least stick to the basic rules of logic. I remember very well the doctor who kept telling me I had a certain type of bacteria, when I'd taken four blood tests that showed not a trace of said bacteria....don't get me started.

I agree about the dodginess of a snap diagnosis. But as far as I know, regular GPs don't diagnose autism, so they can't do a snap diagnosis. I've seen some people on WP who were diagnosed by mental health professionals who seemed to spend very little time on testing, which is worrisome, and often the people who received such a diagnosis are themselves stuck in doubt. I suppose that some mental health professionals feel they are doing patients a service by giving them a 'cheap' version of the testing process. Also, I guess, some people are more obviously autistic than others, and therefore easier to diagnose.

About the validity of other people's diagnoses, I can speak about it generally, but not specifically, because it's both rude and unscientific to question the validity of someone's diagnosis. I am fairly certain that a mental health professional who has interviewed someone in person is better qualified to make a decision than me, a random stranger off the internet.

The difference between asking a doctor for a referral and asking for medication is huge. One is testing, the other is treatment. Being referred for testing doesn't guarantee diagnosis. I don't think it's such a huge thing to ask for if one has significant troubles.

I'd really like there to be a discussion on the definition of 'significantly impaired'. Every time some official person tells me how resourceful I am, I want to vomit. Is that why I have no degree, can't stay employed and receive instant hate from new acquaintances? And that doesn't even have to be autism, it could be adhd, but how is that not impairment? I just want people to stop telling me how smart I am and start helping me figure out how to earn a living wage. I can't eat smart.

Well, I consider myself lucky to not have had to go-through this, regarding my Aspie diagnosis, because my doctor told ME that I had it (as opposed to my telling HER)----BUT, I can certainly relate to what these people are saying, about their doctors' responses, because I went-through it, regarding my ADHD diagnosis.

When I went to get an official ADHD diagnosis (I had been told I had it, by a psychologist, without my asking for the diagnosis, but he wasn't "allowed" to give an "official" diagnosis - long story), my doctor (psychiatrist) said: "You don't have that (ADHD)----only children have that", and I thought he was a bloomin' IDIOT, because of that; but, because he gave me medicine that helped me, considerably, I figured I'd just wait until I was able to consult someone, with some sense.

I can SOOOOO relate to all of the stories, here (and in the article) that have told of doctors (all kinds) giving stupid / illogical assessments, as I have experienced entirely TOO MANY, myself. I try to give doctors the benefit of the doubt----thinking: "Well, they couldn't possibly be an expert on ALL maladies / disorders / whatever"----but, I think I'd be more inclined to give them a break, if they would more often say something like: "Well, I don't think you have that, but let's get some testing, just to be sure"; instead of the response I have heard all-too-often, a flat-out "No, you don't have that". Too many seem to think that people are just supposed to believe any friggin' thing they tell us, just because it came out of their MD / PhD / whatever face, and that they are due / OWED / whatever automatic reverence because of that framed piece of paper, on their wall----HA, gimme a break, already!!

I hear you.

I talk with other coeliacs - some waited up to 50 years for their symptoms to be recognised diagnostically and taken seriously. 30 years is not uncommon, and the dismissals they received when requesting tests were often as insulting as some described here re AS. When they were diagnosed finally, no apologies were made for the poor responses in the past.

More zebras.

I know a decade ago I discussed things with my then care co-ordinator. She arranged an appointment with the pdoc. He huffily asked a few totally irrelevant questions before dismissing the issue. I have never felt confident to further pursue the issue as when I sought more help in the past I was abusively labelled as 'awkward,demanding and troublesome ' and was treated like s**t.

Doctors almost never apologize or take responsibility for anything except apologizing for making you wait in the waiting room for 20 minutes, but certainly no apologies for that which matters.

But isn't it doctor shopping if you are trying to find one who will listen and if you are trying to find answers?

This also happens with other disorders too. Sometimes people know they have something going on and know it's not normal but they can't get a doctor to listen. I also ask myself how can one tell if they are not a hypochondriac and what if the doctor is right? Also how does someone know what they have going on and it's X going on, not Y even though that is what the doctor is saying? What if the doctor is right?

I have dealt with weird symptoms were I would get sharp tummy cramps and then diarrhea and it used to happen weekly and then it was once a month but that was still too often for me. I asked my mom about it because she is a nurse and she was like 'You're just constipated, eat better" and I talked to another nurse about it at my other appointment and she dismissed it too acting like "You just have a poor diet" and I didn't push it because what if they were right? This lasted a few years and then it went away so I am not worried about it and to this day I have no idea how that happened but it sure mimicked IBS. I was even starting to keep track how often it happens so I would have good information to give the nurse if it never stopped. I still get the runs but I notice when that happens, my husband has had them too and my children so I know it was probably something we had or some bug was going around.

My uncle had caner so he was always in pain and he couldn't get any doctor to take him seriously and then it was too late when he finally got the right diagnoses because the cancer had spread too far in his body and it took for him to collapse at home and call 911 and then they finally noticed "This isn't normal." That makes me angry when I think about it and the worst that can happen to someone because this is cancer and you die from it. It's not like it's a mental disorder or a illness or a learning disability because you can't die from those.

Yes, B19... it is rather sad here in New Zealand for people on the spectrum... I have aired my experiances a number of times, it just makes one that already feels more alien even more so...

I discussed empathy with last psychologist that had no experience with the spectrum other than she was also seeing a young boy on the spectrum. I explained i feel very deeply about people and circumstances they may have negatively experienced. For me it can be a number of responses depending on situation etc. But i may not express it in body language but internally is another story... Sometimes i just need to have time to absorb what someone has said and get back to them a little later that again can be misunderstood, or i may be very tired and feel ''too'' much pain that i just need a little time to remove myself to deal with the situation and despite explaining to said '' professional'' about the misconception of empathy and the spectrum and even Simon Baron Cohen recently admitting auties actually feel higher levels of empathy to that of the ''Normal'' population she still preceded to tell me what i am experiancing is only cognitive empathy...OMG... now she is able to feel what i am feeling and taking a false ideology as fact! Which in turn causes one to to inner reflect knowing she is wrong but is alike to a form of brainwashing, trying to tell me i dont feel and it is only cognitive....
Felt so upset... That is only one incident with her, there were so many fundamental flaws in her false logic, i just ended up closing down, because it was like talking to a pre programmed robot...

Mental health in New Zealand and autism is a shambles from every angle. If only people would actually ''LISTEN''... We are the source!

I am kinda giving up here... Very few if any avenues left.

Shambles indeed, Biggles. I feel for you. (Oh no, there I go being empathetic again..how can this be). I have tried several times over recent years to get Autism NZ to provide names of psychologists/doctors that they know have some competency in AS, re adults, and the response has been a resounding silence. Not only are we not capable of empathy, we don't officially exist at all here unless we are behaviourally impaired in extreme ways. (Grits teeth)

Recently TVNZ ran a news item about AS and as usual they depicted it with a clip of a male child flailing around, wildly out of control. I complained to them, because the depictions are skewed and misleading, and got a stupid, patronising two line response assuring me "we do read all the feedback we get".

Autism NZ has nothing to say on the misrepresentation issue (no surprise there) though they represent themselves as existing to advance the interests of autistic people, not just children, in their promotional guff. In practice, they seem to spend their funding to be merely a support service for parents.

They cannot possibly be unaware of the politics of AS in this country, and the issues, but they don't want to acknowledge that there are any issues, and were totally silent on the terrible issue of Ashley Peacock being imprisoned for years "because there is nowhere else to put him". You will also know of the way murderous parents of AS children have been indulged by NZ courts over the years, and the recent outcry led by Mike King on service provision to adults struggling with any mental health issues.

I know there is one psychologist in Auckland who advertises specifically as specialising in Asperger's Syndrome, and her name if you want it, though I haven't heard any feedback about her, and I don't think you live in Auckland (?). There is also the cost issue, registered psychologists charge quite a bit by the hour, which would be a barrier for many.

Anyway, I hear you, loud and clear.









I'll keep on complaining about misleading representations and illegal imprisonment

You will accused of doctor shopping not sympathy for bieng put into that situation. Of course because of this situation many give up and do not even try thus getting the wrong or no answer. While this situation is far from only autism related it seems a lot worse with autism because the basic knowledge about autism is so lacking amoung doctors in a way that is not true for most other condition and autism is considered a fad. If somebody told a story about having to go to 5 doctors before they correctly finding a rare conditions or cancer that person would be much more likely to recieve sympathy then if they told the same story about autism.

About the doctor shopping thing....I'm starting to think that autistics need to stand up for themselves more, even when they've been conditioned not to.

Case in point. I went doctor shopping for a physical problem. Doctors #1 and #2 ought to have noticed that I couldn't get out of a chair without using my arms. In fact, #1 seemed to find it funny. #3 took the neccessary blood tests, and correctly diagnosed me with vitamin D deficiency, then prescribed supplements, and I got well. Unfortunately, by that time, I'd wasted two years of my life living in pain, being depressed, and not getting much done. It took me a really long time to work up the courage to go see a new doctor.

By the logic of respect for the medical profession, I should have stuck with doctor #1 and not have wasted the medical establishment's time. I think that is wrong. If a person doesn't stand up for themselves, who is going to do it? Quite frankly, even in state run health systems, people with money and education have a better survival rate because they know how to talk to doctors, and to find out which options are available.

I really believe in having a family member or someone you trust with you to advocate for you.

AutismNZ came and saw me and after a chat they kinda laughed in the sense that i was on the spectrum. She kept saying, ''Thats how an aspie would respond''. I didnt question why, wish i had now. But when it is a doctor, Councillor, and psychologists that have no experience, you end up dealing with a know it all that knows nothing... They were as helpful as they could (AutismNZ). However if i wish to get an official diagnosis i am now having to pay over $3500 for an assessment,They had no contacts for someone my age unless i pay the full fee, even though originally i was sent for assessment and they accepted, later to find out that it wasn't and then later found out after being bounced around, that they didnt cater for the spectrum... It was a complete mess and confusion... Seems saving up to head over to the Tony Attwood clinic is becoming one of my last options... Certainly shows how bad things are here when one maybe looking to go over seas to find someone that will finally ''Listen''..

You then know how bad it is when you explain you got into effects lighting not just because you like lighting but to combat social issues only for it to be made worse and her resolve and response to that was suggesting social flooding ... Just didnt get it no matter how hard i tried, asked her not to be so tunnel visioned and listen to what i had to say rather than actually come in with a pre determined script. ... She didnt listen....
Yes was aware of the poor fella. I believe he was the one that got his therapy from animals and the system took him away from his parents even though they accepted till then realise the setting they put him in was not what they were expecting, now they cant get him out and he had deteriorated terribly.

Also had the local community show ''vaxxed'' here. Was much discussion on the local forum on that one. Couldn't bite my tongue on that and came out to the entire community and tried to explain the doco was not only false but more importantly it portrayed Autsim in a very negative and false light making those that feel alien even more alienated, despite 5 of the 12 afterwards being re assessed and not being on the spectrum , but all i heard from the anti vaxxers was that it was a conspiracy about those findings... Had people approach me after saying how horrifying it was, i agreed just not in the same way they viewed it!
Yes it seems these organisations tend to gear towards the parents much more...
Have tried to educate ''professionals'', but unless they are dealing with autism professionally or on the spectrum themselves it really is like talking to robots...

I now understand when i hear people saying they are trying to get a 2/3rd opinion, didn't realise till i was thrown in and back out the system!.

It is not like the flu where you go in and you are on par with the doctor, because what he and you explain you both naturally can relate and understand but when it comes to discussing the spectrum it is quit surreal, frustrating and very much the opposite to discussing other medical things.

And yes please, if you could send that contact.I would appreciate it greatly


Funnily enough, i have a mental health professional that just moved in and the topic came up, she mentioned she did once see someone that was desperate for a diagnosis and couldn't understand why he wanted the ''label'' so badly, i explained it wasn't about the label and filled her in, she had a totally different understanding once i explained and it then made sense to her.... Amazing what can happen when people ''LISTEN''.

Last edited by 1Biggles1 on 10 Jun 2017, 1:16 pm, edited 1 time in total.

Speaking just for myself, i am often just using all my energy coping with the situation. It is not until afterwards when i have had time to relax and think do i get a clearer picture of what they are saying and will often feel frustrated afterwards when the penny finally drops of which is too late of course to then express.

Biggles, this Facebook page:

https://www.facebook.com/strangeringodz ... NE&fref=nf

is possibly the most likely place that you may be able to get reliable leads to clinicians competent in diagnosis and feedback on them. Stranger In Godzone is an Aspie woman with the same kind of views as me.

I'll send you the name of the one I know of, perhaps you could ask for feedback on her on that Facebook page though as I haven't heard any.

You make it sound like doctor shopping is a bad thing. My mom basically did that when I was a kid because she knew I had something going on and none of them could figure it out. I guess it depends on context. Like a narcissistic might doctor shop because they want a certain diagnoses. Not because they are trying to get an answer and to get help for their problem. Or someone with hypochondria will doctor shop because they can't be convinced they don't have X and they just have anxiety. While someone else will keep doctor shopping until they find a therapist who understands and hoping they will be able to help them and someone who works with trauma or something and knows about abuse.

I see no problem with doctor shopping. People already shop for real-estate agents, dentists, lawyers and plumbers based on past accuracy. Why shouldn't diagnosticians be held to the same free-market standard?