Self-Diagnosis

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I don't know who Dark_Lord_2008 is so for all I know I could be related to him or her.

1. People who do not have a disorder sometimes look for one to explain some of their problems even if they do not qualify for the diagnosis they seek because having a diagnosis makes some people feel more relaxed because their problems have a name rather than what they really are which is normal struggles inherent to living life
2. Many people who self-diagnose as having Asperger's appear to want to be an "Aspie" for social reasons
3. Nowhere did I state that people look for a diagnosis for the sheer fun of it so that part of your statement is completely invalid



1. I'm not making this up so your statement "Haven't seen too much of that around these parts" can safely be discredited
2. Your statement "For me in particular, I've got the symptoms, they do cause functional impairments, but I am not in any hurry to start trying to work with doctors, possibly going through several rounds of it, just to get a diagnosis and follow-up treatment that may or may not help assuming it even happens" is indicative of exactly what I'm talking about. It's your subjective opinion that you have the symptoms and that they cause functional impairments because if that really were true you would NEED a diagnosis and more importantly the services that are available once you have one.
3. It is completely your subjective opinion that you dread this process far more than the average person would and using that opinion to further your argument that it points in favor of you being on the spectrum is completely unfounded. Nowhere does it say anywhere that dreading the diagnostic process has anything to do with being autistic. What you are doing is using fallacies to support your ignorant and ill-informed self-diagnosis and to protect it by insulting my comments because if you garner enough hatred for opposing viewpoints you will remain safe in your little misinformed, self-diagnosed bubble

It's not about needing a label it's about legitimately having the problems; if you don't need the label because you don't have the problems then you don't need the label, self-diagnosed OR professionally diagnosed

I completely agree, I could not have said it better myself

I personally do care about self-diagnosis to some degree, because I have faced much larger false assumptions because of people falsely self-diagnosing than from the stigma of autism. I am fine with others identifying with being autistic or being an aspie via self-diagnosis - I'd done that even, however I am not comfortable with people who self-diagnosed going around saying or implying "I have Asperger's Syndrome, what I have is exactly the traits of AS" (while saying "these traits of mine match Asperger's Syndrome I'm comfortable with") because that leads to people getting a false idea of what Asperger's is, leading to people who do have the diagnosis being treated poorly.

Someone else self-diagnosising for themself doesn't affect me. Someone else taking that self diagnosis and spreading false ideas about what it is to be autistic does.

As a whole I support self-diagnosis that involved large amounts of research, self-reflection, and trying to get an outside view whenever possible. I don't support "self-diagnosis" that is someone taking the Autism Spectrum Quiz and/or rdos Aspie Quiz and using only those results to make a claim about themselves without having actually done the research. I've seen both occur, and the latter is what lead to people starting to tell me how much I don't have problems because those are only in real autism and I don't have real autism I only have Asperger's which has no symptoms beyond it being hard to make friends...

Doesn't the problem of "my presentation of an ASD is the one true presentation" also exist with those that have been professionally diagnosed? Couldn't that actually be worse, given that their view may generally be considered more authoritative?

As a whole I support self-diagnosis that involved large amounts of research, self-reflection, and trying to get an outside view whenever possible. I don't support "self-diagnosis" that is someone taking the Autism Spectrum Quiz and/or rdos Aspie Quiz and using only those results to make a claim about themselves without having actually done the research. I've seen both occur, and the latter is what lead to people starting to tell me how much I don't have problems because those are only in real autism and I don't have real autism I only have Asperger's which has no symptoms beyond it being hard to make friends...[/quote]

I agree with all this. There's actually some serious drama being kicked up by a self-diagnosed person on another forum (not any autistic spectrum disorders) because he portrays his symptoms as definitive and is extremely uninformed about the condition, but there's a lot of pushback from everyone else because he's just so dismissive and mean about it.

I think there are a lot of factors that contribute to the idea that Asperger's is a mild condition with few symptoms, and I think maybe only a few have to do with people who self-dx. Everyone I've spoken to about my diagnosis who said "That's a mild form of autism, right?" didn't happen to have much - if any - exposure to self-dxers. I've encountered minimization of the severity of my symptoms and assumptions about how well I function from people professionally diagnosed, from people who are self-diagnosed, from NTs, from mental health professionals. In short, from a broad cross section of people I interact with.

That said, I have seen people here who are self-diagnosed say that AS isn't disabling that it only causes a few problems, etc. And every time I see those statements it annoys me.

Last edited by Verdandi on 28 Sep 2011, 4:23 am, edited 1 time in total.

Yes, it does happen with them. I've seen it more from people diagnosed in childhood than from people diagnosed as adults. The worst case of this I've ever seen, though, was ADHD and was a self-DX.

I've had some issues with this sort of thing around people who are officially diagnosed, but personally much more associated with people self-diagnosing. It might just be selection bias, or me happening to get unlucky, but its enough that I personally have to fight a bias against self-diagnosis until I've had it shown to me that the person actually did their research. There were just too many cases of people not actually having read anything, taking the Autism Spectrum Quiz, getting an AQ around 36, and then making a big deal about how they were an aspie too. The fact that most people I know are those who were bullied badly growing up does likely affect this as well.

This is the biggest thing that bothers me. While there is a variety of severities within AS, trying to claim that it is always mild and not really disabling is a huge problem to those of us who have more severe cases. I could see it bothering you even more than me, as from what I've been reading you're one of the few people who look likely to have a more severe case than me that are still categorized as AS rather than classic autism.

Yeah, someone who takes the quiz and is like "Am I autistic? This says I'm autistic!" isn't being very rigorous.

I actually scored 24 on the AQ when I first took it, and then I scored around 146 Aspie/60-something NT on the Aspie Quiz, and said "What?" So I went back and retook the AQ and as it turned out I misunderstood a lot of the questions (oops), and scored in the mid-30s. I still wasn't convinced, though, and I took all the tests in the sticky thread here, and scored firmly in the "autistics normally score in this range" with all of them. I was still not convinced, though, and talked to some people. One friend of mine - who has AS themself, said "Yeah, I thought you were AS all along." someone else I know peripherally but had been in the same general online circles who is also diagnosed with AS said that she always thought my writing had a "spectrummy feel" to it, and then pointed out I probably don't think in words, based on how I write. Which was also true. What prompted all this was I was having a lot of shutdowns and I saw pensieve post about them on another forum, so I sent her a PM, and described a lot of the stuff I experience, and she said it sounded like I could be AS.

And that was all in the first two weeks of last December. I also purchased books from Amazon and read them to find things I could identify with. In Women From Another Planet? I came close to identifying so many elements of my life story I can't even begin to describe it, and the first couple of chapters of Aspergirls were extremely emotional to me because they hit the mark so perfectly.

Ever since it's just been a building mound of evidence leading up to official DX. I tend to assume people who self-dx tend to put as much effort into it, but I am likely wrong.



There are many times I think I should probably have an autism DX rather than AS - and I want to go for a more thorough/complete evaluation via ADOS/ADI-R just to settle my own mind on the matter, but I've been having trouble getting access to that kind of appointment, even though it doesn't seem like it should be difficult, even with Medicaid. I don't really know how severe I am, but you're not the first to say that to me. When I posted about my own DX here in April, at least a few people said it was pretty obvious I was legitimate, though.

But yes, it's really frustrating to see this kind of thing. To have all these problems that I'm still working out, still trying to understand, and then have someone else insist "that diagnosis means you really don't have any problems at all. It's just a personality type" etc, etc. It's really minimizing and frustrating.

What I have received, only rarely, from self-diagnosed people was something like this, "Hey look, I have AS, and I can do this and this and this just fine. Look at how well I, an Aspie, have adapted to the NT world. Obviously, you'd be able to do this and this and this just fine too, if you'd stop being a baby, come out of your shell, and start facing the world."

something to keep in mind is that we are arguing aspects of people's lives that are very integral to their sense of self, and i'd like to encourage people to be careful to remember that this is not just a debate about a disorder - it's an argument that cuts very deeply into how members feel about themselves. just please keep in mind that when discussing something like this it is best to err on the side of respect.



anyways, can someone please clearly explain how formally diagnosed aspies suffer from people being self-diagnosed? i have pondered this question, and to me it seems that:

self-diagnosed aspies aren't any worse in terms of nasty public relations than some formally diagnosed aspies (who may in fact be misdiagnosed)

and

they can't get any state/national resources without a formal diagnosis anyways... so they aren't costing us any money.


is there some other way that they are somehow causing a problem?

Well, I can understand an objection to that. I would object to it too. However, I have done obsessive research on it for a period of approximately three months now. I feel I have a reasonable grasp on it theoretically; the biggest problem for me is that I find it hard to get independent perspective on my behaviour, and even harder to get that from someone who knows about AS. Most of the people who have known me closely who know anything about AS believe my behaviour indicates it, including a few professionally diagnosed Aspies (including one who has no problems right now, but his child was diagnosed, another who needs the diagnosis for a disability pension and possible workplace accommodations in the future). Given that anything I tell a professional about my behaviour, especially childhood, is going to necessarily be from my own perspective, along with the fact that I don't need the benefits afforded to those with a professional diagnosis, and along with all of the above, I'm happy - for the moment - without the diagnosis. I may change my mind later.

However, I would try to never (and hope I would never) represent myself as anything I am not, such as passing myself off as having been diagnosed, or speak as if what I experience is AS canon, and I would also hope the WP members would point out to me if I did any such thing.

This is where I stand on a lot of this. I do get frustrated with certain things as listed above, but ultimately when it comes down to rule of thumb, I tend to stand on the side of "people usually self-dx because they have real problems and are trying to understand them."

This record needs changing.