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

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Someone else -- albeit in a different thread -- suggested that this study is not germane to the flurry of discussions currently taking place on WP. As it is based upon diagnosed individuals (not, self-diagnosed individuals).

Here is a quote from that posting: "the researchers carefully re-diagnosed adults with ASD who had previously been diagnosed by other clinicians. They gave them self-report questionnaires and assessed the validity of these questionnaires in ASD and NT groups to see if autistic adults could report their own traits inspite of language or mentalizing impairments caused by autism...The conclusions were that the questionnaires were valid for the ASD group. There is no conclusion about the validity or accuracy of self-diagnosis, because that was not the topic of the study".

I want to re-emphasize that I have not yet formed an opinion on this matter. Though, I find these discussions interesting and enlightening.

What's the point??? As I have been trying to say (obviously I'm not succeeding), the issue here is deeper than self-diagnosis... the issue here is about what autism fundamentally is. In order for us to be on the same page about self-diagnosis, we'd have to be on the same page about what autism is... and we aren't. So we'd have to argue about that first, and I am going to pass on that, thanks.

Also, although I can only see the first page of the article (without buying it for $40), it sounds to me like that article is actually talking about the use of self-report measures in conjunction with a clinician, which isn't the same thing as self-diagnosis. Again, I haven't read the whole article so I could be wrong, but that's just what it sounds like to me.

I guess various sexualities are the closest thing to autism in that people identify with it and is not a "disease" yet outside people tried to cure it. There have been plenty "who is real" type debates over the years. Some butch lesbians don't think femme lesbians are true lesbians, transgendered people have been called phony by all sides. http://en.wikipedia.org/wiki/Transphobia see the gay, lesbian, and bisexual communities section. Would you believe early proponents of gay marriage were called 'sell outs" by other gays because marriage was considered a hetro construct . Tom Robinson who wrote the 1977 anthem "Glad to be Gay" had all sorts of traitor accusations thrown his way when he married a women. http://en.wikipedia.org/wiki/Tom_RobinsonAnd if a heterosexual guy has a homosexual experience he still might get the "played for the OTHER team" label. The LBGT community are mostly past that. Us, not close.

You're presuming that people are too thick to have any insight into themselves, while you (presumably) have lots and lots of insight. Well, not everybody spends hours scouring the internet every day answering quizzes and reading articles on autism: if they did, they might too start gaining this precious insight.

Even if they don't think of autism, most people on the spectrum are very aware that something is amiss. They know that they are socially awkward, do not fit into social groupings, and so on. It's hardly rocket science. In my case, I put it down to shyness, an introverted personality, depression, etc. As a teenager and young adult, I had some hope that I could learn to be "normal" and fit in; I just needed to try harder, become less self-conscious, get my life sorted out, and so on, then I too would finally belong in the world.

I'm sorry to keep on harping back to Crohn's, but I'm going to make an analogy here. When I was first diagnosed with Crohn's, I didn't really believe the diagnosis because my symptoms were so mild. I did look up Crohn's on a few medical sites. All they had were generic lists of symptoms, only one or two of which seemed to match me. Well, I felt much the same way when I looked up Aspie sites: I matched more of the symptoms, but only because there were far more of them; there were still many left over that I felt like I didn't match.

Long story short: I really had Crohn's. The reason I presented so mildly was because it was caught very early. All the sympoms that I thought were weird or atypical turned out, with more knowledge, to not be so weird after all. I'm currrently undergoing the same process with my ASD and finding out that I'm not such an anomaly after all.

That's why I think lists of generic traits really aren't very helpful, unless you are an absolute textbook case.

Rambled so much, but I spent all this time writing it out, so I'm going to post it...

That Elliot Rodger mass-murder incident was a good example of something very bad that can result from a bogus self-diagnosis, which contributed to giving people with AS a negative rep. It only took one person too.

Perhaps using the term "self diagnosis" is what is actually causing much of the strife here.

I can only speak for myself but I spent years of speculation, research, and studying things that occurred throughout my entire life before I felt confident enough to think I am truly on the spectrum. Is it a substitute for a diagnosis? I don't think so. I didn't tell myself that I am now diagnosed with aspergers/ASD, professionally or self diagnosed. I'm still learning about it, as I hope we all are.

It didn't even occur to me that I might be on the spectrum until I was a grown adult. I flew under the radar, partly because I had to in order to survive and also because when I was a child there wasn't nearly as much awareness. When I was growing up, pretty much everyone only considered the lowest functioning as being autistic.

I haven't been professionally diagnosed but I do feel comfortable with believing I am somewhere on the spectrum. It took me many years to get to that spot. Maybe I'm wrong. I try to keep an open mind.

To the other people here who haven't been professionally diagnosed but believe they fall somewhere on the spectrum, I trust and accept you. I have no reason to doubt because I don't know any of you apart from reading your Internet posts so I will take you for your word and commend your effort. I appreciate that we can all connect and support the ASD community. Together.

I firmly believe that if I can find and afford to see an expert one day that they will confirm my suspicions/diagnosis me on the spectrum, but even if they don't I will appreciate the journey of self discovery and continue being supportive of the ASD community.

I did not say that people lack *any* insight into themselves. I said that they lack insight meaning they may have less insight than other people do. I've seen many people comment here about that, and sometimes it seems to be some of the same people who say that they do not understand self-diagnosis, although I have no idea how often that actually correlates.

I may also lack insight about myself in ways that I am not aware of because I would not know if I lack insight about it.




Again I have seen people comment that they didn't really have a full awareness of that...some who were diagnosed as adults, and some who were diagnosed as children.





I agree with this.

No need to apologize for talking about Crohn's. BTW my grandfather has it and has had full bowel obstructions.

What is the definition of having insight into oneself?
How is it measured who has greater insight into self than who?

I know that I like cats, brains, and matlab, these are some of my insights into myself.

[quote="blueblahbleh"]Perhaps using the term "self diagnosis" is what is actually causing much of the strife here.

That's obviously part of it. There seems to be prejudice around the term "self-diagnosis" from some diagnosees that sometimes borders on outright bigotry. Maybe self-recognition would minimise the conflict, though I won't be putting money on it.

Self-recognised is fine with me, though.

I'll quote what I wrote in another thread: "I think this whole discussion is getting a bit out of hand and it's clear that neither 'side' will convince the other. Can't we (all of us in general) just agree to disagree?"

That is why they say 'self diagnosed' it acknowledges that it is not a proper diagnoses. Professionals could self diagnose but in order to get a proper diagnoses they would not be able to give it to them-self.

I think it's okay to do in the beginning, but it's good to get an official diagnosis later on.

Some of us are hesitant and don't want to rush it, others have trouble with money or disbelieving loved ones and are too afraid to say anything. Autism, especially Aspergers, is used as an excuse to be rude or do anything you want "because im disabled" or to explain why "sometimes i have trouble keeping my rude opinions to myself, omg i must be autistic," so I try to be wary. There's also a lot of self-diagnosed autistics because it's the new trend or you might get special treatment for it.

Always good to be professionally diagnosed, but sometimes we can't.

Um no, the idea the idea that Rodgers was autistic came about because his mom suspected it. A friend of the family mentioned it to the media. It was quickly debunked by psychs hired by his dad then the media dropped it by the false idea still lingers on in the internet. Rodgers in his manifesto which I did read never mentioned Aspegers, not once.

A better example model of one person's doing damage would be Seinfeld and he did not technically self diagnose, he said he thought he had it then retracted. But he is far from a perfect example because he is America's best known comedian. No matter what it is, if a person stops trying to help his or herself because they are embarrassed because one person or a few people did bad stuff or faked it will they will lose out.

I know all that. I said "self-diagnosis" cause it was done by a close-family-member that wasn't a psychologist obviously. The media initially mentioned it as an official-diagnosis though in the headlines right after the incident. It was retracted shortly after that, but the retraction wasn't really in the headlines so a lot of damage was already done most likely.

I suppose I should've said "mommy-diagnosis" instead, since his mom is likely the first person that's going to be biased about him, and possibly not a reliable-source. lol

It only took me 4 years to figure out that this argument is a product of the condition. I have no doubt everyone in this discussion is on the spectrum. The irony is astounding.

Maybe initially. But for a lot of adults who have found out later in life, they've had years and years of not suspecting it themselves until something finally clicks. For me it was my son's diagnosis process and seeing how much of the things that identified him on the spectrum were reflected in me.

I don't really think it's a binary distinction. Prior to my professional diagnosis I don't know if I really considered myself self-diagnosed, but if you pressed me on if I considered myself autistic that's probably the term I would have used because I was way beyond just "suspecting" it. To me, you don't take off of work and drive 4 hours for a 4 hour evaluation that costs hundreds of dollars and gives you little more than validation on just a suspicion. That takes a more certainty.