Have You Ever Changed Your Stance on Self-Diagnosis?

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Mona Pereth
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11 Nov 2018, 10:06 pm

nick007 wrote:
I had to be tested before I turned 21 because in order for it to be a form of autism, my issues have to appear before I turned 21 & the only way for them to know I had those issues before 21 was for me to get tested before I turned 21. I was tested rite before I turned 21.


This is why official diagnosis is very important for YOUNG people. For the older "lost generation(s)," no such services are available anyway. What's more important for us older folks is being able to get together with likeminded people to figure out how we can improve our lives despite the lack of services. For this, what's important is our common needs, which we ourselves know better than any outside authority figure.


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Apple_in_my_Eye
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11 Nov 2018, 11:21 pm

Mona Pereth wrote:
Rustifer wrote:
I've become less inclined over time to see self-diagnosis as a good thing. Why? Because "diagnosis" is an activity engaged in by medical doctors

Perhaps then the term "self diagnosis" should be replaced by something like "self identification" or "self recognition"?

Rustifer wrote:
However, I think it's fine if one concludes that it is 99% likely they have autism, but not officially diagnosing it. One major reason is that it's fantastical thinking to assume everyone should have access to top-notch medical care, and another is that autism is actually real, unlike the 101 "syndromes" that modern psychiatry has concocted to make sure that anyone and everyone can be diagnosed with something.

??? Could you give examples of some of these "101 syndromes" that you believe to be somehow less "real" than autism?

"Autism" as currently defined is actually an extremely heterogeneous category whose boundaries are fuzzy and inherently subjective and arbitrary. See, for example, Can Social Pragmatic Skills Be Tested?. The diagnostic criteria have changed quite a bit over the years, will likely change again, and are interpreted in varying ways even by the experts.


Yep, seeing a doctor doesn't necessarily produce better than 99% accuracy. Even if there is a diagnostic brain scan some day the results will probably also going to have to be be statistical. Even if there is a diagnostic brain scan some day the results will probably blend into to normal at one end, and thus require a judgement call.



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12 Nov 2018, 6:44 am

Apple_in_my_Eye wrote:
Even if there is a diagnostic brain scan some day the results will probably also going to have to be be statistical.

And since we're only a low percentage of the population, there would be a significant baseline effect if universally applied, so additional evidence would still be required (e.g. if autism is present in 1% of the population, and the test accuracy is 99% in either direction, screening a hundred randomly selected people would, on average, be expected to return one true positive and one false positive - only a 50/50 chance that a positive result is correct.)


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12 Nov 2018, 9:09 am

ASPartOfMe wrote:
green0star wrote:
I didn't know one could be self diagnosed. I thought you needed a doctor to have an official diagnosis o_O

It is an expression meaning deciding yourself what condition you have sans medical proffessional. You probably have self diagnosed without calling it that many times. Lets say one day you wake up with a stuffed and runny nose and maybe a sore throat decide you have a cold a take medications based on that belief. In this situation there has been no doctor involved so you did not technically diagnose yourself but the expression “self diagnosed” covers that situation.


That makes sense. I have a friend who's basically self diagnosed. He said he had a lot of people in his family that knew about that kinda thing as well.



superaliengirl
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12 Nov 2018, 9:42 am

No. I've always thought that it's not valid and that is because if you really have difficulties with things you'd want to be able to recieve the many different help and support a person with an official diagnosis can be offered. There's too many people nowadays who sport different diagnoses like they're a cool trend and because they believe it makes them special, fragile, soft little beans for suffering in any type of way when in reality they're not suffering at all and are at most lazy. There is a difference between actual struggle and being lazy and therefore choosing to pretend to have difficulties so you can just blame those. Even with a diagnose you can live a great life, many people do because they've chosen to be happy and fight hard and in my opinion getting a diagnosis and therefore being able to understand yourself better paired with the support you can get even helps with living a better life.

Of course I was pretty certain I had aspergers years before I sent a referral to see a psychiatrist but I did not call myself an aspie nor did I claim to have aspergers but I knew the difficulties that I had and that they matched with autism but I would've felt it was disrespectful to those who actually have it to call myself autistic without a diagnosis. After all you can suspect you have a certain diagnose but in the end you don't or you have an entirely different diagnose than you thought although that is not what happened in my particular case. Of course though there are people who feel they have autistic traits but they don't care so they don't try to get a diagnosis and I respect that, some people don't feel they need to know and they don't have any major difficulties. The only problem I have really is when someone says that they are autistic but they've never had it confirmed. It feels like they're just pretending in order to be and feel special - lots of people do when it comes to mental health, unfortunately. Just look at those trendy "cute but psycho"-shirts and everything, like what is cool about being psycho?



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12 Nov 2018, 9:51 am

StarTrekker wrote:
Have You Ever Changed Your Stance on Self-Diagnosis?
No.

[opinion=mine]

Self-Diagnosis is irrelevant if it does not lead to effective treatment and/or compensation.

The only relevant diagnosis is made by an appropriately-trained and licensed mental-health practitioner.

With a relevant diagnosis, it is possible to receive therapy, treatment, and maybe even subsidies for living expenses.

Without a relevant diagnosis, the self-diagnosed individual is only floundering around in the dark.

[/opinion]

If anything, these last ten years of WP membership have only reinforced this opinion.



quite an extreme
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12 Nov 2018, 2:17 pm

Fnord wrote:
Self-Diagnosis is irrelevant if it does not lead to effective treatment and/or compensation.


Thats right. I'm slowly improving because of it. My social skills improved a lot.

Fnord wrote:
The only relevant diagnosis is made by an appropriately-trained and licensed mental-health practitioner.


Depends on what relevant means.

Fnord wrote:
With a relevant diagnosis, it is possible to receive therapy, treatment, and maybe even subsidies for living expenses.


For this you are right. But I doubt that anything of this would help me. I don't have many problems and nearly no problems where this would really help.

Fnord wrote:
Without a relevant diagnosis, the self-diagnosed individual is only floundering around in the dark.


Depends on the quality of the 'relevant' diagnosis and how it helps to improve.


PS: Don't get me wrong. A diagnosis would have helped me to realized what's wrong with me. 30 years ago it could have changed my live in a great way. But now? But I think I will try it. May be it helps a little bit if I'm getting judged next time.


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Last edited by quite an extreme on 12 Nov 2018, 4:51 pm, edited 3 times in total.

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12 Nov 2018, 2:29 pm

Trogluddite wrote:
Apple_in_my_Eye wrote:
Even if there is a diagnostic brain scan some day the results will probably also going to have to be be statistical.

And since we're only a low percentage of the population, there would be a significant baseline effect if universally applied, so additional evidence would still be required (e.g. if autism is present in 1% of the population, and the test accuracy is 99% in either direction, screening a hundred randomly selected people would, on average, be expected to return one true positive and one false positive - only a 50/50 chance that a positive result is correct.)



That's a very good point.



firemonkey
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12 Nov 2018, 3:28 pm

The idea that you can't really have a disability or problems if you've not sought an official diagnosis is of course total bunkum.
There are many reasons why people don't pursue a diagnosis ie financial, anxiety about the assessment process, doubts whether you're as disabled as you really are etc.

Indeed it is possible to be as much or more disabled without a diagnosis as with.



ASPartOfMe
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12 Nov 2018, 5:11 pm

firemonkey wrote:
The idea that you can't really have a disability or problems if you've not sought an official diagnosis is of course total bunkum.
There are many reasons why people don't pursue a diagnosis ie financial, anxiety about the assessment process, doubts whether you're as disabled as you really are etc.

Indeed it is possible to be as much or more disabled without a diagnosis as with.

^^^^
This

Another way of putting it you can be autistic if you self-diagnose, never diagnose or get professionally diagnosed. I did not suddenly become autistic at age 55 when a qualified professional with 30 years experience diagnosed me.

A person can be allistic despite a diagnosis by a qualified and competent professional. Another words it is POSSIBLE I have been fooling myself, my family and WP members based on a misdiagnosis.

An ASD diagnosis by a qualified professional is more likely to be correct then a self-diagnosis. I believe because of the subjective nature of the autism diagnosis and lack of knowledge of how autism presents in adults and females, the odds of a well-researched autism self-diagnosis being correct compared with a professional diagnosis is higher than with other conditions.

My stance listed above has not changed.


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12 Nov 2018, 8:37 pm

At the end of the day whether officially or self diagnosed it comes down to a subjective assessment as to whether you present with the required symptoms . You hear of people getting a no with one psychologist, and getting a yes with another.



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13 Nov 2018, 1:17 am

Some years after I self-diagnosed, studied the available information, and concluded there were no effective remedies available for autistics aged fifty plus, an acquaintance working on a PhD thesis on adult autism told me he could only use my story if I completed a formal diagnosis. So, I completed a formal diagnosis. That was a decade ago. There are still no effective remedies for people in my situation, though a psychiatrist I consulted has given me some nice little pills that ameliorate social anxiety, and the world is still largely ignorant of adult autism. Worth the effort? Who knows...



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14 Nov 2018, 2:11 am

Prudolph wrote:
I've never changed my stance. I think autism diagnoses are too liberally dished out these days, especially for what was formerly known as Asperger's Syndrome. Autism is supposed to be a disability - and a disability is supposed to have such a debilitating impact on your ability to function properly that you require a diagnosis in order to gain access to the necessary support you require in order to function better within society. A majority of people who are self-diagnosed, in my experience, do not have issues that are so complex and debilitating that they cannot properly function within society without support (of course, a minority might have these issues, but in countries like the US may not have had the financial luxury to seek out a diagnosis). Therefore, in my opinion, they do not have a disability, so therefore cannot have autism, which is a disability. They are just socially awkward, may have anxiety, and may have some sensory issues which most people don't have. That does not automatically equate to autism. The other issue is that, when people take these online tests, are they really answering honestly? They may not be answering dishonestly, but maybe they are subconsciously exaggerating their answers as they are hoping to find an answer to what the issues is? Wouldn't you rather find out you have mild autism, than something potentially more serious, like bipolar or schizotypal disorder?

TLDR; no, my stance has not changed, and that is that I personally do not agree with self-diagnosis. If other people do then that's fair enough, I respect their right to an opinion as I hope they will with my opinion.


This aligns very much with how I feel. I’ve recently started a blog on tumblr, and have noticed a huge number of people self-diagnosing with autism then turning around and validating said self-diagnosis by saying, “a professional diagnosis wouldn’t help me because I don’t need supports or accommodations.” If you don’t need support, according to the DSM, you’re not autistic.


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14 Nov 2018, 1:29 pm

StarTrekker wrote:
To be clear, I do not want this thread to turn into a flame war over the validity of self diagnosis. I simply want to hear everyone’s experiences.

I joined WP over six years ago, a naive teenager fresh out of high school. I had done my research, taken my quizzes, and come to the conclusion that I had autism without having been to see a doctor. I supported self diagnosis fully because I was one of the members of that camp. I felt confident in my ability to discern and label my own afflictions without the input of a professional.

Two years later, I saw said professional, completed an extensive battery of standardized clinical tests, and received an authentic diagnosis. I still believed self diagnosis was fine, because my own had been validated. I had diagnosed myself and been right.

Fast forward another four years, I had completed my psychology degree, become a social worker, and subsequently burned out and quit after a long battle with significant mental health concerns exacerbated by my autistic challenges. I had more specialists than I knew what to do with, two to three appointments every week, and providers for services I hadn’t even known existed. All for a person with “mild” autism. I was starting to fully understand the gravity of what having a disability means. It is not a simple thing to identify or to treat. There are so many variables, so many minute differential diagnoses and subsequent treatment plans. These days I have to say that I cannot fully support self diagnosis, because I’ve seen firsthand the complexity of the psychological system, and it is too detailed and too nuanced for any layman to grasp fully. To illustrate, for many months I suspected I may have ADHD. I went to an extensive and detailed evaluation, and came away with diagnoses of generalized anxiety disorder and PTSD instead. Very different conditions that happen to have some subtly overlapping symptoms.

I support exploration, I support suspicion and curiosity about one’s suspected symptoms, I support research and reaching out to communities like this one with questions or concerns or for advice. I support “I think I may have X” but I cannot in good conscience support, “I absolutely have this because I diagnosed myself”. If I could go back in time, I would tell younger me not to diagnose myself, that I could get help and support without needing to declare a label. The fact that I was right is irrelevant. I got lucky.

So, is there anyone out there whose opinion on self diagnosis has changed over the years, in one direction or the other? I’ve never read about this phenomenon so I’m curious. Again, this thread is intended to seek answers to this question, and not to argue with me or anyone else about our views on the topic.
My opinion on self-diagnosis is this it's not valid it's just a step towards validity.


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14 Nov 2018, 9:21 pm

My dad often refers to himself as dyslexic, even though he has never been officially diagnosed. When he was growing up it wasn't as well-known, so there weren't really any services available.

He doesn't see much point in getting a diagnosis at his age. My mum proof-reads his emails, and sometimes I make sure he spells certain words on forms or documents correctly. I also read out things for him if he asks. Personally, if I didn't know that he was self-diagnosed I would assume that he had a professional diagnosis. He spells things phonetically, tends to find it difficult to read things in his head, noticeably misreads words sometimes, has trouble remembering written instructions...and so on.

Generally I find that it's just easier to say "his dyslexia" or "he's dyslexic" whenever it comes up in conversation. If you take a look at my dad's side of the family you'll notice that quite a few relatives seem to struggle with spelling, which suggests that there is indeed a genetic element at play. So dyslexia certainly seems to be the most logical explanation.

Personally, I struggle more with numbers than with letters. My parents have suspected that I may have dyscalculia from the age of eight years old and still suspect as much. A few friends of mine also suspect this. In fact, the people around me have a tendency to talk as if I've been diagnosed, leaving me to add "Oh, no, I don't have a diagnosis I just suspect it and so do the people around me but we don't know for sure" if they're talking about it with someone else. I sometimes use the term "visual processing issues" when talking about it, because I have had generalised (yet official) tests done which do in fact confirm that my ability to process visual information such as abstract symbols including numbers is drastically underdeveloped. The fact that 99% of test takers scored better than me was truly eye-opening, and I've had this test administered to me twice (once at 14, and another time around 17) both times I scored the same. It's possible that it's visual processing disorder or something else, but I don't think that fully encompasses all of my difficulties. Since I don't just struggle to take in visual information (numbers switch around, so do music notes and I can't remember rapid-fire number sequences) but also with short term memory at times (particularity when it comes to numerical information such as arithmetic facts).

I've looked into official testing before, but it's not cheap nor is it guaranteed. One website I found stated "We offer dyslexia screenings starting at £350, and if we think it's necessary we will do follow up tests for dyscalculia for an additional £150". The key part being "if we think it's necessary" not the person paying for the tests, which concerns me because what if they suddenly decide "because of your circumstances we don't think it's worth it"? Should someone with the same concerns as me ask at the start of the process about this? Is it even worth it? After all, most people don't even know about dyscalculia, and at this stage does an official diagnosis even benefit me? If I were doing a more maths-orientated course then my University would be required to offer testing and support, but since I'm not it's entirely on me if I want to go private or just leave it as something myself and others strongly suspect.

Now, self-diagnosis isn't always good because sometimes people identify as a completely incorrect label and miss the actual problem. Often this is due to common misconceptions about a condition. However, it can be beneficial (mainly in casual conversation in an informal setting) to do so.


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15 Nov 2018, 7:50 pm

Lost_dragon wrote:
Now, self-diagnosis isn't always good because sometimes people identify as a completely incorrect label and miss the actual problem. Often this is due to common misconceptions about a condition. However, it can be beneficial (mainly in casual conversation in an informal setting) to do so.


What you mention here is a phenomenon that, unfortunately, is not unique to autism diagnoses, learning differences, or psychology. As a scientist, it's something that I have to always be careful about when I report anything.

It's what I like to call fitting. In other words, instead of using the data you've collected from your experiment to draw your conclusions, you're starting with a conclusion, and selecting the data that best supports your hypothesis.

Don't fall into that trap if you can. It's very easy to do, and I've probably done it once or twice myself in my career. Professionals are people too so they're also susceptible to falling into that trap. I wouldn't trust a professional who tests only for autism (even if you tell him that's what you think you have); there could be some other condition that's missed because nobody looked for it.

If you want to self diagnose, make sure to get several lists of symptoms, firstly of the condition you think you've got, but also of anything that shares at least a few symptoms, preferably from as many sources as possible. Then pick the one(s) which you relate to best.

I reiterate that I neither support or refute self diagnosis. I'm simply saying that if you do it, make sure to do it right.


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