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

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Isn’t language a funny thing? When I think “very sure”, I think without question and without doubt. But, perhaps that certainty isn’t really there. Perhaps there is some lingering doubt.

I think, maybe, I finally understand the friction caused by these types of threads. The people who argue against self-diagnosis could perhaps be re-introducing doubt into the minds of the self-diagnosed. Which could increase their anxiety and angst (i.e. “was my self-diagnosis valid?”).

My definition of self-diagnosis is someone who says to other people that they have autism/are autistic when they have not been diagnosed with autism. They can be any percent sure in their own minds, I have no access to what is their minds.

Like many people on wp say "after I found out I am autistic", "after I found out I have Asperger's", "knowing that I am autistic", "I know I have AS", "I am autistic", "I have AS", "I have ASD", etc etc etc, and in many cases, people who say these things are not diagnosed with any ASD, and they are saying that they are autistic or have an ASD when they have not been diagnosed.

That could be part of it for some people, which is totally understandable, but I don't feel that way.

What I feel more is irritation that people keep making broad assumptions about how people self-diagnose, such as just reading one article and deciding on the spot that you must be autistic. I don't think people are calling themselves self-diagnosed on the basis of anything so unsubstantial. People are talking more about the "possibilities" of how people self-diagnose, and not understanding or acknowledging to the "actualities" of it.

Some of the arguments are just wildly absurd (like the poster who suggested that anyone could convince themselves they have a broken leg - that's completely unrealistic and not a good analogy anyway). It gets really tedious just to see these kinds of things stated over and over. And having to address those statements is like having to start back over at square one in the discussion.

It's tiresome to discuss things with people who have already made their minds up that they are right and what other people think or do is wrong. There's no fair give and take in that kind of conversation, it's like talking to a brick wall, or a bot.

I have been around this forum awhile and made a lot of posts talking about my traits and symptoms, my experiences in life and my theories about what makes me the way I am. I realize this is a big forum, and not everyone knows me, but I think if anyone is familiar with my posts at all they should realize I didn't just wake up one day and decide that I'm autistic on a whim. It's been a 3 year process and I put a lot of thought and careful consideration into it.

I don't expect anyone here to validate my process or my conclusions. I don't care if others find it valid or not. It's valid for me and that's what matters. And I've been completely honest here about not having a professional diagnosis. I am going to use the term self-diagnosed whether other people like it or not, because the use of that term has long been established here, and if other people have a problem with it I think that is just too bad for them because I am not doing anything wrong or hurtful.

I thought the friction was caused by people being emotionally attached to their self-diagnoses and/or reading social and emotional motivations into criticism of self-diagnosis.

On another note, I no longer think that I have Asperger's! I've self-diagnosed myself as a brooding child Romantic. Yes, even though I'm no longer a child. Our knowledge of brooding child Romanticism is growing everyday; the doctors don't know everything, so I'm obviously justified in making up my own diagnostic criteria and rejecting fundamental components of the condition.

Since there are no doctors qualified to diagnose brooding child Romanticism, I was ABSOLUTELY FORCED to self-diagnose. The self-diagnosis now spreads around me like a force field, PHYSICALLY preventing me from walking into the offices of quacks who might destroy my life by misdiagnosing me and prescribing me medication, even though there is no medication for brooding child Romanticism. I NEED that force field because, even though I'm empowered enough to self-diagnose myself without any relevant training, I'm somehow simultaneously powerless to question possible misdiagnoses or reject medication.

"Very sure," to me, means that there is NOT 100% certainty; "absolutely sure" plays that role linguistically.

This makes sense.

Though, I suppose I am wondering what people really believe when they say, “I know I have AS” (or whatever). I tend to take what people say, as fact. Which means, if they say, “I know I have AS”, there is no question in their mind about it. Next, I wonder, what the characteristics of people who would have such certainty (via the self-diagnosis route). Do they have this level of confidence with other topics (that are not related to self-diagnosis)? Also, what is their background? I wonder what percentage has a background in engineering/science versus something else. Again. I am simply curious. Primarily because I am so skeptical of everything that I am unsure of anything.


I sense that people who discuss their self-diagnosis on WP, spend a lot of time researching the topic and evaluating themselves as objectively as possible using as rigorous a process as possible. It’s my belief that this is the expectation that should be conveyed to newer members, considering the self-diagnosis route.


You may be right. I don’t know. I am simply “trying to get into their mind” so I can understand their perspective.

One must remember that, in many places, an official diagnosis costs a considerable amount of money, and doesn't confer upon one diagnosed any benefits--other than a confirmation of their "condition," and resulting peace of mind.

Sooo, getting diagnosed with an ASD is now pretty much a rich-Aspie's sport? Hehe. If so, I agree.

Within a US context, it is my impression that if somebody's already in the "system" for something else--such as depression, it is easier to obtain an ASD diagnosis for, at most, a reasonable price.

If somebody's "out of the system," a person would have to be lucky, indeed, to obtain a diagnosis which has a reasonable price tag. I have seen research studies which test people with Asperger's (or, now, ASD) for free (or they even pay you). However, it seems as if the diagnostic process within these studies is conducted by a Master's/PhD student, rather than a board-certified clinician.

Last edited by kraftiekortie on 12 Dec 2014, 6:41 pm, edited 1 time in total.

I imagine, linguistically, you are quite correct.

However, for me, if someone asks, "are you very sure" (about a topic), I will not answer "yes" unless I am 99.99% certain. And, in that case, I would say, "I am not 100% certain, but I am 99.99% certain". And then I would go research it (to achieve that 100% certainty). I cannot explain why. That is just the way I am.

And, not surprisingly, I oftentimes think that everyone else thinks exactly like me. I have to constantly remind myself that that is not the case.

The Autistic Self Advocacy Network http://www.autisticadvocacy.org/ often uses the phrases "self-identify," "self-indentified" and "self-indentification" when compared to a professional diagnosis. In fact, ASAN's position statement on the matter is a quantum leap ahead of many of the opinions shared here:


Just another reason why I really, really like ASAN.

Last edited by AspieUtah on 12 Dec 2014, 6:43 pm, edited 2 times in total.

Now that we have Obamacare in the U.S., I don't understand how an ASD assessment is too expensive for U.S. citizens. Maybe my state has better coverage than others, but I'm getting TWO completely different assessments without having to pay a dime.

I guess my state has more qualified practitioners as well. The more practitioners there are, the more likely one is to find someone who is willing to take one's insurance.

I don't believe assessments for ASD's, if one is out of the "system" (i.e., for the most part, on public assistance/Medicaid) is covered by the vast majority of insurance plans.

I still believe that many people (who are "self-diagnosed"), should a free evaluation be offered for ASD, would jump at the chance to be assessed in this manner, no matter how skeptical they might be about the process, no matter how fearful they are that their impressions might turn out to be mistaken.

Right, but in that case they are paying for private health insurance or have a decent job and, presumably, most are therefore well off enough to be able to afford an assessment without too much of a financial struggle.

Us poor people, on the other hand, ought not be barred from assessments for financial reasons now that the ACA is in effect.

I have wondered about this myself. It then makes me wonder if ASD is even more prevalent than “they” say (because of this).

I'm self-diagnosed, from first scoring as "highly likely Aspie" on the famous AspieQuiz.

However I am pursuing a formal diagnosis. (It's taking forever though.) I would not be pursuing a diagnosis unless I was 99.999999% sure I'm Aspie.