Critical of self diagnosis - you shouldn't be

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There is nothing misleading about it whatsoever if a person is up front about having diagnosed themselves.

If you criticize the practice of using the term self-diagnosed, all it is going to do is make people want to stop being up front about it, and potentially misrepresent themselves as being professionally diagnosed when they are not.

It is misrepresentation to say that one has autism when one has not been diagnosed with autism.

If people are prepared to lie about having a diagnosis when they don't, that's on their conscience, not mine. I wouldn't let that unlikely risk deter me from saying what I really think and feel.

I didn't say that people would lie about it...some might but I think what's more likely is that people are just not going to be up front about it, because they do not want to be criticized for it. They just won't mention it, and/or other people may make the assumption that they have been professionally diagnosed.

The point is, if one is concerned about misrepresentation, it is self-defeating and downright idiotic to criticize people for representing themselves honestly.

reposted below due to attempt to edit. due to loads of typos eg.... I wrote "after many tears" rather than many years ! !!
Never a truer word was typed in error!

Last edited by Peejay on 29 Nov 2014, 5:19 pm, edited 2 times in total.

I believe it's exceedingly rare for people to claim they are officially diagnosed when they are not. There's very little misleading going on, if at all, within this Site.

Last edited by kraftiekortie on 29 Nov 2014, 5:18 pm, edited 1 time in total.

Hey Booyakasha don`t worry.... stuff happens!... thanks very much for your efforts to retrieve what you could, must have taken a while....good job there.

I am sure that the readers following this debate remember the gist of the arguments.... really well put and argued with intelligence and feeling from all sides. Its the journey not the destination etc... and I have done a lot of thinking reading all the posts so far.

In a strange way it might be a good thing as this gives us the possibility to `reset` the debate , as at times long debates can end up going very tangential and I think, at times (self included), we often end up discussing minutiae.
I choose to attempt to flip everything to the good if I possibly can ... so this is my way of viewing this happenstance.

To be honest I felt we were coming to some kind of conclusion really anyway.

I think there were a number of arguments:

Diagnosis is a semantically a technical term and technically `officially` a person can only officially use that label in that way with an official proffesional diagnosis... it is a technical thing read in that way.
Therefore to self-diagnose is not really to diagnose due to the lack of technical authority to do so.

Another argument is that a self diagnosis is only a guess and not really a diagnosis due to anumber of reasons including lack of technical expertise, unreliability, and subjective bias. Therefore one should not really use the word diagnosis

Another strand was that Professional diagnosis could potentially be unreliable too (and even dangerous) due to lack of knowledge by the `expert` including the diagnostic procedure being constantly modified and practicioners not being up to date with the latest schools of thought (my favourite being that some people with ASD like myself are actually hyper-empathic not unempathic as the classic aspie is framed as being) which are never quite included on the latest DSM which is only updated every decade or so I think (?)

(I tried to introduce the argument for user led research that is increasingly taken seriously by professionals and although `qualitative`is still really valuable. This can include anecdotal evidence, which less scientifically certain than quantitative data can en masse present a very persuasive critical mass of evidence in favour or against a diagnosis. Diagnosticians will do this anyway in lieu of concrete evidence apparently.

Therefore self-diagnosis could still be really helpful as it is and should be taken quite seriously as it is by most of the people who really research hard to verify their own self-diagnosis. Also diagnosis can be very expensive and is not available to all ...so what are you going to do?

One of the strongest thrusts of argument (one that I personally take) is of personal ownership of my Aspergers official or not.
This is a valid thing to do (and I do not mean `valid` in the way statistical evidence makes something scientifically valid)
I mean valid as a human being can be with self intuition, knowledge (gnosis if you will), wisdom, brutally honest self analysis, rigour and serious reflection
The self evident truth of an intuitive mind. I would argue that this can provide as much weight as all the official diagnoses..... and is ultimately potentially really helpful.
In most cases it can be really helpful... whats not to like? Who does this hurt anyway? how can this hurt diagnostic officialdom. As many have commentators have said, they has Aspergers well before they were diagnosed.

Ultimately I think it is a case of live and let live, no argument here is definitive as this subject is still in its early days and study and science is a dynamic process which includes subjective opinion as well.

I think overall we should support every voice here even if they differ from our own. There is no one `truth`. People who visit this site or self diagnose obviously have a need to learn something and it could help them on the way, who are we to judge?

20 years ago I researched into autism because I thought I had some of the traits but then I dismissed it because I did not have many other traitsand behaviours classed as autistic,
I did not look again until a couple of years ago when I found out about Aspergers and this fitted me perfectly; whereas what I thought was (classic) autism didn`t; it explained all the other bits that did not fit in before Eureka!
it explained nearly everything that had ever happened to me with social interactions for my whole life!

There were lots an lots of other interesting comments for and against, If I have not recapped the most salient I apologise and would encourage another contributor to fill in the gaps I have missed.

(Please excuse all the typos I haven`t got the energy to edit further)


I will put a couple of links here (I hope this is allowed ... moderators?? apologies if not)

critique of the EQ test (an example of how diagnosis itself it under debate all the time):
https://autismandempathyblog.wordpress. ... st-part-2/

User led research:
http://www.critpsynet.freeuk.com/FaulknerThomas.htm

I believe that if an adult with HFA went to a dozen psychiatrists reporting anxiety and feeling unsocial and with few friends, but never mentioning they suspect Asperger's or autism, that this person would seldom be diagnosed as on the spectrum by these professionals.

It seems to me that many here on WP either got diagnosed when they were younger, when a teacher, parent, or pediatrician, first spotted symptoms, or as an adult, when they went looking for a diagnosis of autism or Asperger's, after first reading about Asperger's and autism and seeing traits in their own histories. And when they went to a professional diagnostician they mentioned it right off... or even went to an Autism specialist with their concerns.

Self diagnoses is not even claimed to be a scientific process...people who claim to have self diagnosed are typically well aware that does not mean its an official diagnoses, they are quite aware it means they think it is very likely they have it but are not formally diagnosed...so yeah its invalid as an official diagnoses as it would not excepted as documentation of having the disorder, but it is not an invalid thing has validity to people who think they are on the spectrum and leads many to pursue a professional diagnoses...and its not going away anytime soon.

Also again it might be low quality as an official diagnoses, but how can thinking one has a disorder based on information they have looked into..or even people suggesting they could have it be 'low quality'? That is all self diagnoses is. But I digress lots of official diagnoses are low quality as well, many mental health professionals do not actually know much about aspergers/autism...lots of other things to specialize in.

What would be misleading is if someone claims to have an official diagnoses when they don't. Also you don't have to agree with self diagnoses, you can even question it...however if you take it as far as disvalidating someones experiences and trying to make them feel unwelcome on the basis of having a self diagnoses, when it is a valid thing here. I mean if someone posts a thread of being self diagnosed and you go in and just keep arguing that would be kind of counterproductive and not really appropriate probably.

I'm not asking people to parade photographs of their certificates of official diagnosis. I couldn't give a carrot whether somebody wants to identify as being on the autistic spectrum or not; I'm just saying I reckon there's a high probability that they're wrong about it.

It didn't really hurt my conscience any when I was still in the self-diagnosed stage and discussed my experiences with what seemed to be autism symptoms/traits without mentioning right off that I wasn't officially diagnosed. Didn't lie, but of course when trying to have a discussion about those matters I would not want to end up in a debate about whether I have autism or not.

Exactly.

I also do not want to have someone continually interrupting a discussion to say they disapprove of self-diagnosis and thereby inciting a debate.

If you were in the process of seeking out an assessment, then that's not the same thing. Presumably if you had received a negative diagnosis for autism you wouldn't have carried on the pretense (for want of a better word) after that. You would either have left WP or just ignored your results and said what a fool your psychiatrist was.

Myself, I lurked on WP while I was in the process of seeking out an assessment. Not because I was in the slightest bit worried about what other people would say: I just wasn't really interested in joining until I'd had the results of my assessment. If it had been negative, I suspect I would never have joined WP. Again, not because I was worried about other people's opinions - I just don't want to identify with conditions I don't actually have, even if I have a lot of the symptoms/traits in common.

EDIT: Just to add, I have never seen anybody on a personal level being interrogated about whether or not they have autism. It doesn't matter if you have an official diagnosis or not; if you make a thread asking about symptoms or traits, people will weigh in with their own experiences - that's all they're really concerned about. Most people just like to talk about themselves (I'm no different).

Last edited by NiceCupOfTea on 29 Nov 2014, 7:59 pm, edited 2 times in total.

If you don't want to incite debates about self-diagnosis, then it would be a good idea to start by not making threads about that very subject and telling people what they should think about it.

I haven't started any threads about self-diagnosis.

I doubt I would have left WP if I hadn't gotten the diagnoses, even if it turned out I wasn't on the spectrum and something else actually accounted for the things I thought were autism...as it is still an interesting site. Also depending on if i had reason to belive the psych was wrong or not would have determined my reaction, I might have went for another evaluation if they seemed lacking in experience/knowledge.

Also I ended up being in the process of getting a diagnoses, but for a while I just acknowledged it was very likely I was but was still trying to go through college so did not see much reason for an official diagnoses, it was more when I made the decision to apply for SSI when I figured I might as well get it assessed so it could be documented. Even now though I wonder if it was entirely accurate or if maybe it really is something else, even the official diagnoses does not make me 100% sure.