My issue with "self diagnosis".

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Wikipedia was probably the most confusing resource, actually. I found it hard to understand the descriptions of the diagnostic criteria used for AS and autism due to not knowing what several words meant. Many clinical and scientific descriptions also failed me (for example: an obsession with the sameness of things) because while they described problems I had, they did so in an NT-centric way that failed to grasp the essence of what they were discussing (unexpected change is frustrating and upsetting and can be almost painful to cope with). I didn't want/need things to remain the same, I needed advance warning, and of course anything I decided to change myself was usually easier to cope with.

Anyway, I think that it's useless to focus on how self-diagnosis can be wrong. Everyone who's self-diagnosing is intimately aware of this fact. Appealing to professional authority is a waste of time on a forum where many people have had to deal with misdiagnoses that were useless or even outright harmful (due to medications or treatments that were inappropriate for them), and again most are intimately aware of the fallibility of medical science.

People come here for a reason. Many undiagnosed people who come here believe they might be autistic. Very few seem to be absolutely certain of it. I think it's reasonable for people to be clear that they were self-diagnosed. I don't think this is a sign of insufficient research, of confirmation bias, of simply being wrong, although I do think that it is a matter of potentially being wrong. Many want help in figuring things out, but posts like this don't help - they're too general. "Most of you are probably wrong, so stop saying you're autistic" isn't remotely helpful, and quite possibly isn't remotely true.

You will find people who agree with you that people should be careful how they present and describe themselves. I agree with that. But you'll also find quite a few people who were self-diagnosed and then officially diagnosed. I can think of one who got his diagnosis after being accused of faking. I was accused of faking and doctor shopping once a few weeks before I received my official diagnosis, although that is not why I was seeking a diagnosis in the first place.

So every researcher requires official diagnoses, and those who don't require it don't count? That's convenient.

I never claimed AASPIRE was a research institute, incidentally. I said specifically they don't do research. They connect researchers with autistic people.



It's completely relevant as research focuses on people diagnosed with a particular label, or grouping people by label. It also shows uneven diagnostic standards, which is why many researchers want even a gold standard for including people in studies.

Also, that research I mentioned is extremely relevant as it was one of the reasons that the DSM-V is collapsing everything into one diagnosis - changing how autism is diagnosed so everyone on the spectrum undergoes the same standards for the same diagnostic label.

I have no problem with people who self-diagnose and then get an official diagnosis provided they make it clear that they believe have autistic traits or think that they might be on the spectrum. But I do not agree with those with those who self-label, present this diagnosis as a fact and then become offended when their label is challenged.

Why do you want to challenge them? Why does their label need to be challenged?

Prior to my diagnosis, these are the autistic traits I described on this forum:

* Special Interests
* Sensory sensitivities
* Shutdowns
* Meltdowns
* Stimming
* Palilalia
* Sensory oddities (visual snow, visual fragmentation, visual pixellation, visual agnosia, auditory, agnosia)
* Literal interpretations and literal speech/writing
* Difficulties with change
* Getting lost when coming at a familiar location from a different direction
* Not recognizing things when they were different from how I remembered (as in, rearranging furniture or painting a house)
* Difficulties with adaptive skills
* Flat/muted emotional affect
* Lack of eye contact
* Autistic inertia (getting stuck doing the same thing for hours at a time, unable to stop)
* Finding socialization exhausting
* Disliking and not knowing how to manage small talk
* Not understanding other people's intentions
* Frustrations with other people misreading and imposing their interpretations of my intentions
* Preferring to interact with an adults as a child/teen, preferring not to interact with people most of the time

From the autism criteria in the DSM-IV this covers:

I
A) 1, 2, 4 to varying degrees
B) 2, 4
C) 1, 2, 3
II
C)

To be fair, I probably talked about matters related to "typical symbolic or imaginative play" the least. But it was there.

Should I have been challenged for saying I was self-diagnosed autistic? My claim was vindicated, although with a diagnosis of AS.

That presents two possibilities: Either you reach you own conclusions in such a superficial manner and so expect everyone does the same, or you have an exceedingly low opinion of the the mental faculties of others. I can't decide which is worse.

All we can say is that there are those who self-diagnose and get it right, and those who get it wrong. Likewise, there are professionals who get it right and those who get it wrong.

Personally I just don't understand why some people seem so upset and uptight about the who self-diagnosis issue. We have a thread or two like this every week and the poster always comes across as so very ANGRY like someone gave them a vicious kick to the groin.

I'm not particularly concerned whether anybody cares if I really have AS or not because I don't fool myself that I matter much or that anyone really cares. Likewise it doesn't matter much about what labels others choose as clearly most of the posters here have problems or difficulties of some kind and of similar nature. I have been told by one of the professionals (an individual for whom I have no respect at all) that I could be considered to have atypical autism or a pervasive developmental disorder; it matters not the least to me at all as I still regard my self as a self-diagnosed aspie and my day to day problems are the same and remain my own.

What I do object to is the trivialisation of peoples lifetime experiences and hardships down to 5 minutes self-analysis with wikipedia. That is grossly insulting.



I wouldn't expect it any other way.



Just for the record, I'm not one of those who believe you can diagnose random people on the spot by observing them.

I match very few symptoms for diagnosis, and my actual diagnosis was a two minute interview with a psychologist where he challenged me with the Sally Anne test. I was 22, the test is for young children. (Maybe my meta-analysis of the question gave me away, or maybe my mum was just really pushy.) It would be ludicrous to say my diagnosis was worth more than a thorough, introspective self-diagnosis.

It should be obvious why researchers can't use self-diagnosed people.

^^^THIS.

A person who genuinely "self-diagnoses" does not do such a thing. Diagnosis involves careful consideration.

Yes, diagnosis requires careful consideration by a professional who is qualified to undertake such a task.

And it's grossly insulting to those of us who go through the time and expense and anxiety of the process that others think that the same process can be replicated by reading some web sites and doing some online tests.

What does what other people do have to do with what you did? How is the fact that people do this remotely about you?

And why are you speaking on behalf of everyone who has a professional diagnosis? I have a professional diagnosis, and I certainly don't agree with you. Several others who disagree with you here have professional diagnoses.

I like how you keep trivializing the process of self-diagnosis. You really don't and can't know what people did to come to their conclusions, unless they tell you, as I did earlier in this thread. And if you think what I wrote in that post comes down to "reading some websites and doing some online test," I'll be left to wonder why you didn't bother to read said post.

No one ever said that AASPIRE were invited to do research studies. The quote above says that the organisation accepts candidates for research. Therefore they do research.



I am not talking about specific studies; I questioned that those doing research - and gave the example of NAS - would accept the self-diagnosed for research.



Nope. I was diagnosed at ARC and have been contacted by various universities (not only Cambridge) to see if I would be interested in participating in their research on autistic adults.



The rightness or wrongness is one issue. The bigger issue is the validity of the diagnosis. My argument is that a self-diagnosis is not valid and muddies the waters for those of us who were diagnosed by a professional qualified to undertake such a diagnosis.



No, it's not convenient. For the researchers, it would be a heck of a lot easier if they allowed everyone who self-identifies on the spectrum to be a research participant. As I've said numerous times, it is a question of the validity of the diagnosis.



You said that AASPIRE accepts candidates for research. See the first quote above.

It has nothing to do with the validity. They're trying to demonstrate something to their peers using the scientific method: they need to appear to be rigorous.

I am in agreement with this....I do not feel I based that I have AS on faith, I actually researched the condition and also have spent the past year studying psychology. Intrestingly enough its amazing how much people in the psychology profession don't know, the professor was open about that fact as where most of the documentaries we watched in class.......so I don't think a professional diagnoses is nessisarly more valid than a self diagnoses.......especially if the individual self diagnosing themself has done their research.

Unless a psychology professional has taken the time to specifically research AS, then they aren't going to know any more about it than I do.

You don't have to question the terminology anymore because, contrary to your assumption, a "diagnosis" doesn't necessarily mean "the conclusion by a medical professional following assessment of the patient".
One of the definitions of diagnosis is: The identification of the nature and cause of something (of any nature).
In other words you don't have to be a doctor to diagnose something (or someone), of course your diagnosis can be wrong (and you do so at your own risks) but so can a doctor's diagnosis if he/she is not familiar with Asperger syndrome.

What makes a professionals opinion so much more valid......especially when it comes to psychology, I suggest you enroll in a couple psychology classes at a college so you can familiarize yourself with how clueless many psychology professionals are and how little is actually known about the causes of mental disorders. Its all assumptions......A professional reads the diagnostic criteria and makes a diagnoses if the person has all the symptoms.

If a professional has not specifically studied AS, they aren't going to know more about it then an individual intrested in self diagnosing.

Also the assumption that those of us who self diagnose simply read through some web sites and do a couple online tests to make the self diagnoses is quite offensive. Of course I used intrenet resources to research the condition, but not wikipedia, wikipedia is not even an acceptable source for college papers. I also talked about it with the therapist I was seeing and he agreed I had the symptoms.....and gave me quite a bit of reading material about it.

Also though one of the major things that has prevented me from pursuing an official diagnosis is I can't afford it....sure there are mental health resources for low income/no income people, but that's usually just counseling which does not get me a diagnosis.

Nobody is trying to "replicate" that process. Nothing has been taken away from you. You still have your piece of paper from your doctor. You are still the same person you were yesterday and will be tomorrow.

We all know someone who thinks they have every ailment under the sun and who shoot off half-cocked. My own father is a hypochondriac of the worst kind, so I'm all to familiar with those who draw firm conclusions from the flimsiest of evidence. Ironically, though he is likely on the spectrum himself I can guess my own father would be in utter denial of that despite loving the idea of having every other illness since that would mean there was something amiss with his brain and that wouldn't sit well with him. But I digress.

I don't see how one can make such sweeping generalisations about others lack of critical thinking whilst showing unwavering respect for the professionals who after all are fallible human beings, all of whom with different abilities and training, whose thinking will undoubtedly be clouded by personal experience, all using various interpretations of the diagnostic criteria.