My issue with "self diagnosis".

Post Reply New Topic

DISCLAIMER: I am in no way, shape or form indicating that just because a person does not have a formal diagnosis, they do not suffer from the condition. I am just questioning the use of terminology in such cases.

Diagnosis is, by definition, the conclusion a medical professional reaches following assessment of the patient. It's a piece of paper signed by a doctor; a code used in your medical notes; a formality. Therefore, the concept of "self" diagnosis is an oxymoron, unless you happen to be a qualified medical/mental health professional. Even then, it would be impossible to make a diagnosis of ASD based purely on your own imput, which is likely to be highly subjective.
I dislike use of the term "self diagnosis" because it implies validity and seems to be cropping up more often as a kind of "alternative" to legitimate diagnosis, even though they're not comparable at all.

Terms I prefer:
- "pre-diagnosis": the person acknowledges they may have an ASD and is in the process of seeking a diagnosis
- "undiagnosed/suspected": the person suspects they have an ASD but is not seeking a diagnosis
- "provisional/working diagnosis": the person has been told it is likely they have an ASD (by somebody who is qualified to make that judgement) but other conditions have not yet been ruled out

Under these conditions I would class myself as having a working diagnosis.

What are your thoughts?

Well put. I like the distinctions you make.

I don't care if people say "I think I have ASD" or "I have some traits and am seeking a diagnosis" because that's clear. But to self-diagnose on the basis that are related to someone they think has ASD or they read an article or took an online self-test or someone who is not qualified to diagnose them told them informally that they are on the spectrum is ridiculous.

When I 'came out' at work I was quizzed about whether or not I had actually been, you know, professionally diagnosed or if I had just woken up one day and decided that I was on the spectrum. And to get formal recognition of having ASD I had to produce medical evidence.

Oh, and until I had a copy of the psychologist's report in my hot little hands, I said not a word to anyone about my suspicions that I might has ASD, in case I turned out to have OCD or ADD or Borderline Personality Disorder or any other number of disorders.

Not sure I really like the assumption that if you're not officially diagnosed....you woke up and simply decided you where on the autism spectrum. In my mind if I tell people 'well I think I might have aspergers.' rather then 'I have aspergers' then its likely the response would be oh so your using a condition you think you might have just to make excuses. I guess I don't feel the need to be open about being 'self-diagnosed' untill I've determined if that is the best idea with whatever individual I might discuss it with.

Not to mention actually getting an official diagnoses is a very complex, expensive process from what I hear.......so obviously that plays a role in why people with AS or even other conditions might not want to pursue an official diagnoses.

For one thing, I don't suffer. Another thing that I'd like to say is that I don't have any issues with the self diagnosed.

Before I was diagnosed I always said 'I think I have AS' rather than 'I have AS'. I didn't know for sure. I was pretty certain I had it, but I needed to get the official diagnosis before I felt at ease... and even then I didn't because it didn't explain everything! Now with my quadruple diagnosis of AS, Tourette syndrome, OCD and ADHD I feel complete! (or should that be complete... ly weird?)

While generally I don't mind people who self diagnose I do not like it when they act like they know EVERYTHING and then use their undiagnosed AS as an excuse for being rude or blunt. You can be rude or blunt without having AS...

suf·fer/ˈsəfər/
Verb:

Experience or be subjected to (something bad or unpleasant).
Be affected by or subject to (an illness or ailment)

So if you have an autism spectrum disorder, yes, you do suffer, because that is the verb generally used in conjunction with the nouns "condition", "disorder", "syndrome", whatever you choose to call it.

I suffer badly because of the sensory issues that come with my AS. It's different for everyone though.

Well there is the issue of not being aware something is rude or blunt, in which case sometimes it can be helpful to mention the AS to explain yourself so people aren't as offended. intentional rudeness however is not something AS would ever excuse.

Self-diagnosis is an end to itself, in that nothing useful can come from such a belief.

There are other syndromes and conditions that can mimic AS/ASD, and thus the person making the diagnosis can be easily misled. Also, other conditions can affect the person's perceptions, making their actual symptoms only seem to indicate AS/ASD. Finally, confirmation bias may play a significant role in the self-diagnosis, in that the person may have already decided that he or she is going to end up with an AS/ASD diagnosis, and seeks only those symptoms that confirm this desire while ignoring any conflicting data.

The only valid diagnosis of AS/ASD is made by an appropriately trained mental-health professional that is certified and licensed to do so.

Diagnosis or self diagnosis is only of importance to the individual. It is none of our damn business if random people are saying they have Asperger syndrome or whatever, as long as they do not use that as an excuse to behave like dicks and tarnish the reputation of ASD people.

Personally, I have very strong reasons to suspect I have Asperger syndrome, but I will not be 100% certain until I get diagnosis from at least 3 different doctors. Contrary to most self diagnosis opposers, I do not believe a doctor is infallible: for this reason, I want opinions from different people.

I am not seeking diagnosis right now for two reasons: money and some weird mix of pride and secrecy: I do not want anyone to know I am in the process of being diagnosed. I intend to only tell my closest relatives about it once I am absolutely certain.

If people shouldn't self diagnose then what are they supposed to do if they have no money or insurance or any way to get a real diagnosis?

This. I personally read up on AS and related issues for a solid year (after being diagnosed with ADD as a child and depression in college), and for all that it's worth I consider myself an Aspie. That does not mean I'm going around pretending I have a diagnosis I don't have, or being a jerk to everyone and using it as an excuse.
There are many reasons a person might not seek a "professional" diagnosis, and dismissing everyone who's "self-diagnosed" in the same bag just doesn't make sense. There are people who took half a quiz on some website and there are people who are just as knowledgeable as the professionals, and there are tons of people in between.
Seems like judging people on this fact alone is just as heavy-handed as "diagnosing" yourself from a Cosmo quiz.
edited: Not that you are judging people. Just pointing out that even this label contains a huge spectrum of people.

Last edited by snpeden on 26 Dec 2011, 5:30 pm, edited 1 time in total.

I also like your distinctions and would agree 100% with them. What I do worry about however on a forum such as this is that lack of a formal diagnosis could easily be used by some as a way to invalidate the views and opinions of others, creating a sort of two tier community. This makes me feel uncomfortable.

It should be acknowledged that not all mental health professionals are as well trained or knowledgeable as others. It’s quite possible for a person to go along to an assessment presenting all the signs of AS and still get diagnosed with something else; and those who have been formally diagnosed should realise that their diagnosis is only as good as the clinician they saw at the time. It’s not a 100% guarantee.

In that situation, they would either be pre-diagnosis (if they plan to persue a diagnosis when it becomes possible in the future) or undiagnosed. Simple as.

Self diagnosis is a problem when people use it as grounds to make a statement such as "I have Asperger syndrome", because then there is no degree of seperation between self-diagnosed and legitimately diagnosed cases. It trivialises the condition and is somewhat arrogant, in my opinion. I'm not denying that a self-diagnoser may know a lot about AS, may have read the entire DSM, have studied autism meticulously, but that still does not mean they have Asperger syndrome any more than a person with a headache who has read a lot about brain tumours has a brain tumour.
There is no problem with saying "I suspect I have Asperger syndrome", because that does not imply that you definitely have the condition. "I have Asperger syndrome" does.

I have to disagree with your definition of the word "diagnosis". Diagnosis is a process of observing and analysing information to reach a conclusion. And "qualified professionals" are not necessarily any better at that process than anyone else.

As an example, I am not a veterinarian, my medical knowledge of people or animals is far from extensive. Yet I was helping to take care of a very ill guinea pig belonging to someone else, and over time, observing his actions, behaviour, etc. I suggested a possibility. His owner mentioned this to the vet treating him - who was not only a "qualified professional", but a professor of veterinary medicine at a highly respected university. This "qualified professional" rejected the very possibility his problem could be what I suggested. However, after their recommendations for treatment were followed, and the poor guinea pig got worse, another vet, a relatively new one, reached the same conclusion I had. She ordered blood tests - and he had exactly what I thought he had. The tests confirmed it, too late to do him much good, and after I had, in effect, tortured the poor creature at the insistence of the "qualified professional". And, again, this wasn't an ordinary person with qualifications - this was someone who taught others, who passed on their own qualifications...

Yes, that is just one example, but I've known many others. That just happens to be the most egregious. (There was the MD who denied he was hurting me, while I screamed in pain - then, when blood began pouring out of my ear, asked how he was supposed to know he was yanking out hair in there along with the wax... Or the vet who killed my first two cats - two cats, two vet visits (one each), two deaths. And the first cat wasn't even ill, she was just supposed to be spayed and boarded for a short while. The second did have FUS, but that is not fatal, and the vet said he would be fine, sent him home, and he died that night. - Edited to add: I was barely thirteen when the second cat died, thus not the one choosing where to take them. When I was five or six and we pulled up to leave the first kitten, I told my parents the place was bad, but they wouldn't listen. How could I tell? The sound of dogs and cats crying out in pain and fear was obvious even in the parking lot. But my parents were sure that he had his veterinary degree, so he knew what he was doing. - Or the computer tech who left me so desperate for a solution I figured it out myself, while trying to help them think through the problem...) I don't consider professional qualifications to be any more convincing than you consider a self-diagnosis. There are people who get that impressive piece of paper without knowing enough to justify it, and people who never get the degree but who actually know a great deal.