Is self-diagnosis okay/valid/a good thing?

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Sorry, but humans are inherently biased. I've seen people on the IBD boards spend hours and hours combing through research papers and speculating about the causes and treatments of IBD. Are they onto something? Mostly I think not. One guy is a pure crank, even though he has probably put hundreds - if not thousands - of hours into reading. He's also a convincing crank and has managed to take other people along for the ride with him. The thing is, he's completely sincere about it. That's probably why he manages to be so convincing.

In a nutshell, people believe whatever they want to believe. They can spend thousands of hours reading academic papers to confirm their beliefs.

My apologies. I'll address your reply in the next sentence.

Depends on what? What are the determinant factors?


(The rest of the reply I'll ignore as it is personal attack.)

Clinicians frequently are less biased than "layman"--but there are clinicians who have agendas--or who might have agendas laid out for them to follow.

When the standards of objectivity reach that of most medical diagnoses, then I believe this argument will become moot.

You do make an excellent point about cranks, though. They show that clinicians are inherently less biased and are held to higher standards.

Last edited by kraftiekortie on 14 Dec 2014, 7:33 pm, edited 1 time in total.

Part of the reason I value professional diagnosis is because professionals have seen various people with various conditions, so I value their clinical knowledge accumulated over time. I wouldn't trust a professional who had not diagnosed a number of other people with autism before or had not at least trained under another professional who had diagnosed others with autism. I wouldn't want to be the first person they had assessed for autism. I value this kind of knowledgebase over time and applications for people more than keeping up with the latest research developments in autism, most of which are tentative, some in really new fields with little literature on any group, and most are difficult or impossible to apply to diagnosis without much more testing and development.

On wp, I have often seen people misunderstand the contents of research studies and quickly jump to conclusions, such as saying that XYZ applies to them like the research shows, when the research was not even about XYZ, but something else entirely.

That's why I put "comprehension" in my standards.

Definitely, people could sway the results of research to their own advantage.

Official diagnoses should carry more official weight--but more "benefit of the doubt" should be given to self-diagnosis/self-assessment.

Self-diagnoses should not be dismissed as a default.

Last edited by kraftiekortie on 14 Dec 2014, 7:43 pm, edited 1 time in total.

Exactly.

In fact I said in an earlier thread I didn't know any other people on the spectrum (apart from maybe my dad, but I don't count him), whereas the autism team who assessed and diagnosed me have probably seen hundreds of adults with autism. Aside from what I read online, I have no clue about how autism actually presents itself in real-life adults.

When people have surgery, they seek out a surgeon who's performed hundreds of the same surgery beforehand. Not somebody who hasn't done a single surgery in their life, but has read every textbook and academic paper on the subject that there is to read.

This, which apparently some pro-professional-diagnosis only people on these forums completely fail to grasp the concept of.

Do you have statistical data to support this?


I fully respect someone suspecting they may be autistic.


Which means, by definition, any age could 'self-diagnose'.


What are the control measures to determine whether the research is valid/sufficiently broad and objective?

If you don't mind a slight tangent:
I find it hard to believe that you could determine that a person does or does not suffer from depression unless you were very intimate with them, like a family member.
It seems to me that depression is not something you talk about or reveal when you are depressed, rather you avoid interpersonal contact and try to be inconspicuous when in public.

Thinking about this leads me to the further thought that I have been told by others that I seem depressed when I am not. I am not always sure who is right in such moments. It turns out to be quite complicated, because one's own perspective is distorted by the condition. One may be an unreliable witness in when it comes to one's own internal states. One may at times find it difficult to recognize anything but very basic emotional states in oneself.

This thought leads me back to the pitfalls of self-diagnosis and some reflections on my own journey through these issues. As some have mentioned earlier, a difficulty of self diagnosis is the lack of external experience. One cannot see oneself as one is seen by others and this is a critical part of the diagnosis.

When I first began to ask the question "could this describe me?" I found myself ruminating over things people had said over many years that I had found peculiar but that made sense if they were taken as indicators that to external observers I am weird in a way consistent with mild autism. But I knew that I could not know if this interpretation was accurate--fortunately I was able to confirm this by asking some of them. It was deeply shocking to me to realize that others had seen me this way because I had not wished to know that. This process revealed to me just how unreliable introspection and the imagined image that others might have of one can be.

But the discussion of depression and the realization that self-knowledge is limited brings to mind what seems to be the other big problem with self diagnosis is lack of knowledge about other conditions that might produce symptoms like the ones a person can see in himself and the ones a person can imagine others see in him.

Just as I did not want to see that I might be autistic and could not allow myself to understand even when people tried to tell me, so one might be unable to perceive various other conditions and one might distort one's perception of their symptoms, choosing "aspergers" as a more emotionally acceptable alternative to another label.

For example, one might wish to think of oneself as a quirky but gifted aspie, rather than a “crazy” schizophrenic or bipolar person when in reality one might be better described by the other label or a combination.

Ergo 'self-diagnosis' cannot be trusted?


Why?


But you just said the results can be swayed at the will of the individual undertaking 'self-diagnosis'.

I understand the rigors of science and their necessity.

Self-diagnosis makes use of relatively more applied science than most scientists employ--the same with clinicians diagnosing autism.

It would be nice if objectivity in autism diagnoses would match that of most medical diagnoses. That will only occur with more research, and less battling over semantics.

What is the relatively more applied science than scientists and clinicians apply?
It seems to me to not be any kind of science, much less relatively more applied science.

Which doesn't equate to 'self-diagnosis' having validity due to the medical diagnostic process lacking perfection.

Again, this is a fallacy of association.


1) Scientific research is very different from the individual's search for themselves that is held to constitute 'research'.

2) Semantics is key to describing the product of scientific research.

I think Adamentium makes excellent points about the extreme subjectivity inherent in a lack of corroboration by an objective outside agency, such as a clinician.

Still....a self-diagnosis shouldn't be dismissed outright. Especially since it was never claimed to carry as much weight as a medical diagnosis, nor is the exact definition of the term "diagnosis" claimed.

A person who is self-diagnosed cannot claim to have a condition in a court of law.

But WP is not a court. It is up to each individual's discretion whether to attach credibility to a self-diagnosis--but it shouldn't be dismissed outright.

I meant more SCIENTIFIC, PEER-REVIEWED, DOUBLE-BLIND, etc type of research.

Alex commented on the Critical of Self Diagnosis thread to the effect that striving to discredit self-diagnosed people on a support site is not a very good idea.

I agree with Alex on that. Invalidation of self diagnosis is what has been promoted in threads like this, sometimes in very harsh ways.

Unfortunately, invalidation is one of the researched and recognized triggers to suicide in young people, when its source is family members or a peer group. This is a peer support group. It is believed that autistic young people have higher rates of suicide and attempted suicide, cutting and associated behaviours. I think we all need to be mindful of the potential for these unintended consequences arising from threads like this one.