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Well, here's my thoughts about self diagnosis...

If you self-diagnose with autism, there are four basic possibilities.

One, you self-diagnose and you actually have autism. Result: You get to know more about yourself, maybe solve some problems that weren't getting solved because you didn't know how to define them. Net benefit.

Two, you self-diagnose and, while most professionals wouldn't say you are autistic, you're very close to it and might have been diagnosable as a child. That would put you on the broader autism phenotype end of the spectrum, with autistic brain-wiring but not across the diagnostic threshold. Result: You get to know more about yourself and get to know other people who are similar to you; and while you don't have major problems, identifying as autistic still puts you in a community of people who are used to eccentrics and accept you more than the very difference-sensitive mainstream does. Still a net benefit.

Three, let's say you self-diagnose and you're totally neurotypical--no mental illness, no ADHD, no weirdness at all. Result: You start hanging out with autistic people, and you realize, hey, wait a minute, I don't really fit in here. These people are having experiences I'm not having and I have no clue what they're talking about. From there, you either get frustrated, leave, and hopefully deal with whatever problem wrongly pointed you to autism; or else you decide, well, these autistic people are OK for friends even if I'm not autistic myself, and you make some friends you wouldn't otherwise have had. In many cases, NTs who think they may be autistic have problems with making friends for some other reason; and in those cases, they may even find the friends they want among the autistic people they have got the chance to hang out with. Net result is just some wasted time, not the end of the world, and maybe a bonus to your ability to communicate with the neurodiverse, if you haven't had a lot of opportunity to hang out with the odd ducks of the world until then.

Four--and this is where the problems start--is if you self-diagnose and you don't actually have autism, but you do have some mental illness, neurological difference, or other diagnosable problem that is causing difficulty for you. In that case, the results aren't so benign, because just like an autistic person misdiagnosed as something else, you may try to deal with a problem while presuming a completely different cause for it than actually exists. In that case,  you may be leaving a problem unsolved when it could be solved if you knew the reason. Problems commonly confused with autism include social phobia, avoidant or schizoid personality disorder, intermittent explosive disorder, some kinds of epilepsy, depression (especially dysthymia, the long-term low-level variant), attention deficit disorder, or an eccentric personality combined with some kind of mental/neurological difference.

I'd like to address the possibility that people may self-diagnose and use it as a reason not to try to solve their problems. In my opinion, if you self-diagnose and start blaming your problems on your diagnosis, chances are that you would have found something else to blame, eventually, because you weren't looking for a solution when you labeled yourself--you were just looking for a reason to legitimately give up on finding a solution. That sort of avoidance will happen whether or not the person uses some psychological label as the immediate method; he might just as easily have blamed it on bad parenting, being from a minority race, or being average-looking.

This is pretty obvious when it pops up, though, since you'll find someone who isn't saying, "Oh, here's why I do this; how do you guys deal with this, how can I adapt those strategies," as most self-diagnosed people tend to do, but, "I'm autistic; I can't help it. Woe is me." I honestly don't see that second one very much. But I really don't think this problem has much to do with self-diagnosis, since you can use a correct diagnosis for an excuse just as much as an incorrect one; and would be using some other excuse if you hadn't picked autism. The problem here is avoidance and getting the idea in your head that you're helpless to change your circumstances; it's really got nothing to do with self-diagnosis.

So if you're considering self-diagnosis, how do you make sure you don't fall into the fourth category, the misdiagnosed problem that is harder to solve because it has the wrong label?

First of all, just rejecting self-diagnosis altogether doesn't make too much sense; because there is definitely a place for self-diagnosis. Since it's easier to think about diagnosis in terms of physical illness than in terms of neurological difference, here's an example:

We self-diagnose in other circumstances, and nobody seems to think it's odd. For example, last week, I had a stuffy nose, a headache, and a sore throat. I self-diagnosed the symptoms as a cold and treated myself with a decongestant and hot tea. The cold resolved in a few days. We do that all the time, under a certain set of circumstances: The illness isn't serious; it doesn't require a doctor's visit to cure; and we know enough about it to recognize it when we see it. And if you're wrong about having a cold--say, you actually have allergies--then the symptoms aren't so severe that they actually pose a danger to you.

A cold is easy to self-diagnose, but it wouldn't be so advisable with liver cancer. If you had signs of liver cancer, even if you were absolutely sure it was liver cancer and not something else, you'd have to say, "Hmm, this seems serious. I should go see someone who knows more about this than me, who has been trained to treat it." And while autism is not an illness and cannot kill you, diagnosis of mental conditions follows along the same lines of logic as physical ones.

Bottom line with self-diagnosis is, I think, is I'd only recommend it under a narrow set of circumstances, all of which should be true if you're considering actually doing the research and coming to a conclusion on your own:

1. Whatever problems that led you to consider autism are not severe and don't cause major impairment. For example, if you tend to get exhausted at the end of a day of socializing and have to relax, that's not a major problem; but if after twenty minutes you shut down, melt down, and spend the rest of the day rocking, that's a major problem.

2. You're capable of understanding the concept of diagnosis, including differential diagnosis, have a good background in psychology, have enough insight about yourself that you can take a relatively unbiased viewpoint, are able to study a subject on your own until you master it. If you can't do this, there's a great danger you'll mis-diagnose, and that leads to trouble.

3. You want to self-diagnose so that you personally can solve problems in your life that have been popping up because you are different from other people; or you want it so you can understand yourself better. You don't need accommodations at work, at school, or anywhere else; nor do you need outside assistance.

If it's not causing major problems, you don't need outside help, and you've got the knowledge to do it, then sure, self-diagnose. If you're right, you'll gain self-understanding; if you're wrong, then whatever you do have, or if you don't have anything at all, it isn't serious and can be dealt with on your own.

But if you have major problems, or you aren't sure about how to determine whether you should self-diagnose, or you are trying to get assistance with anything, then you need to go to a professional. I know it isn't always possible to do so; anyone too old to still be in school and with poor or no health insurance may have serious difficulty finding a professional; and in some cases, even though there are severe problems, there has been so much mistreatment that seeing a psychologist can only trigger flashbacks and mistrust. In these cases, sometimes there's no choice but to make the best guess and do what you can with the resources you have. It still isn't ideal, though. Ideally, if there are severe problems for which you need outside assistance or accommodation, you should be going to a professional.

Of course, once you go to find your professional and get his opinion, you have to make sure he's someone who is qualified to diagnose autism and to tell it apart from all the other things that can mimic it--and in an adult, not a child--and then actually to treat you with respect and suggest reasonable solutions to the problem of being autistic in a non-autistic world--but that's a whole different subject.



I managed to successfully self diagnose myself with Benign paroxysmal positional vertigo, and that was subsequently confirmed, and it's a lot better than CJD or PSP or whatever other dx's one might be hypochondriacally disposed to think of first.

However I don't go a bundle on the "benign" aspect at all, because I would be quite happy if a cure came along as it is rather inconvenient at times.

With regard to ASD I can recall a professional telling me that most people who suspect it, usually turn out to have it.
Heh, I had an episode of that. It sucked; I was dizzy for weeks. Apparently it happens when your inner ear isn't reading the information about your position properly, so you always think you're spinning. It disappeared as mysteriously as it appeared... I think that's why doctors say Idiopathic; they just don't want to admit they don't know where the heck it came from!
Your posts are so intelligent, Callista!
I fall into group 2 of the four you listed--probably would have been diagnosed as a child but would not be diagnosed now since I've pretty much overcome the "impairments" by realizing that many things are not for me (i.e. romantic relationships) and that with the internal and external resources I have, I have the wherewithall to live a happy life.

It would have been immeasurably helpful, I think, to have been diagnosed in high school or college in that it might have saved me from years of aimless depression. But maybe then I'd have used it as an excuse. Hard to know. I might have just swapped one set of internal insecurities for a different set.
I suspect I have aspergers.
A psychologist didn't think I did, she thought I mostly have social phobia, but...
I do tend to stim
I am slow to anger and get frustrated, but I get overloaded. Especially in places like NY.
Like when I went to see Dir en grey in NY after being out in the freezing cold weather from 10pm-6pm the NEXT DAY and there were so many noisy people and after a while I just went NUTS with frustration and annoyance and thought if ONE MORE PERSON TALKS TO ME OR TOUCHES ME I'll BITE them. Urg. I hate time's scare.
And being around people popping gum making all of these annoying noises.
Plus I'm fixated totally on moths, butterflies, Dir en grey and talk about them obessively.
Man, do I want a Death Head Hawkmoth.
So i have to wonder...
Of course, once you go to find your professional and get his opinion, you have to make sure he's someone who is qualified to diagnose autism and to tell it apart from all the other things that can mimic it--and in an adult, not a child--and then actually to treat you with respect and suggest reasonable solutions to the problem of being autistic in a non-autistic world--but that's a whole different subject.

This was the bit that tripped me up. I've been self-diagnosed on the mild end of the spectrum (and spent quite a while identifying solely as BAP, though I meet criteria for AS) for about 2 years, and as I'm hoping to go back to school I've become more interested in getting a professional diagnosis. My undergraduate school was very small, with a number of autistic students (some diagnosed, some not), and very adaptable to the students' needs without a lot of pressure from the students or disabilities liason. I don't expect the same from a postgrad, let alone med school like I'm hoping for.

The first guy I saw took my insurance (which was pretty important--I couldn't have afforded it otherwise), so I chose him. He had no experience (though he told me at the start that he did, and later revised his position) working with adults on the spectrum, and was very vested in the diagnosis of social phobia because it's what he has (and spent a while harping on that point). He gave me an avoidant personality disorder and social phobia diagnosis, neither of which I meet the criteria for or have, and refused to explain why he had reached those conclusions except that he was uncomfortable giving a young woman an ASD diagnosis (!). He didn't care which disorder was correct, but rather in giving his pet diagnosis for awkward women.

Luckily, my therapist now is a lovely woman who took the time to learn about autism in adults after I came to her, and strongly agrees with my self assessment. We're working for me to get reevaluated by someone who knows what they're talking about, and also working on my alexithymia. Finding someone who knows or is willing to learn makes all the difference.
This post should be required reading for anybody considering any kind of self-diagnosis. Terrific job.
I think I would be in group 1 or 2 - I'm fairly certain I'm on the spectrum, and have no doubt I would have been diagnosed as a child, but I've learned to cope and adapt since then so it's not nearly as obvious though I still have problems.


I've referenced your post


My blog post at the above URL references this post. You may be interested in reading the comments.

Re: I've referenced your post

Oh, interesting! Well, a belated welcome to the Spectrum, then! :)


"Four--and this is where the problems start--is if you self-diagnose and you don't actually have autism, but you do have some mental illness, neurological difference, or other diagnosable problem that is causing difficulty for you."

Yeah, this is the story of my sister. She became obsessed with autism a couple of years ago, tried to have herself diagnosed, tried to get her son diagnosed, tried to persuade our mother and myself to get into the autism thing, and eventually declared everyone in our extended family, whether dead or alive, is autistic. It became clear to me that there is something seriously the matter with her but I had no idea what is could be.

It was frustrating to have to argue with her about things like, "Is reading a book on a special topic over the course of just three days a symptom of autism?" She typically latched on to a random little thing like that, and before you knew it, she was calling it a symptom. What bugged me is that she seemed to get heaps of support for this nonsense from the various support groups in the Internet, apparently from individuals similarly obsessed.

In the end she did get diagnosed, but not with an autistic disorder. She became psychotic, had to be hospitalised, and was found to suffer from a schizophrenia-like psychotic disorder. I always remember this episode when I listen to people going on about how they need to get "DXed" with Asperger's, mild autism, or something like that over the Internet. It seems there are many people who, without realising it, seek from autism a nicer, more socially comfortable explanation their problems which would otherwise be diagnosed as something that carries a stigma.
Schizophrenia and autism are about equally common; and in the prodromal stage, it might be hard to tell them apart unless you had a neutral observer to ask about your history; and you might not be impaired enough to logically seek a diagnosis. At least your sister's obsession put her in touch with the mental health system, so that when something went wrong she did end up getting help.

Autism, incidentally, is not all that much "nicer, more comfortable" in many cases. You wouldn't believe how many times I've had to deal with the "drooling retard rocking in a corner" stereotype. It may be more socially acceptable than schizophrenia, but if we have anything to say about it, the social acceptability of one mental/neurological disorder versus another is going to matter less and less as it becomes more and more acceptable to have them. It wasn't your sister's fault that she got schizophrenia, any more than it's my fault I was born with autism; and neither of us ought to be ostracized for it.