Asperger's syndrome self-diagnosis
LordoftheMonkeys
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11 Jul 2010, 10:40 am
I am a bona fide aspie; I was diagnosed at age 7, and I get annoyed at all these people who diagnose themselves with AS. I'm not talking about those who have the symptoms but just can't afford to see a psychiatrist. I'm talking about people who don't actually suffer from it, meaning they have pretty good social lives, no emotional issues, no sensory problems, no trouble with organizational skills, no OCD or ADHD, have no trouble getting jobs, establishing relationships, etc., but just happen to be slightly more shy and introverted than most people. The thought that someone who has very little trouble in life and has none of the issues I have should be diagnosed with the same disorder as me, someone who has suffered throughout life and continues to struggle to this day, just pi$$es me off to no end. These people get to feel "unique" and "special" without having to deal with all the agony that comes with the disorder.
I'm also sick of people with mild cases of AS being put on the same level as those who are more severely affected. I suffer not just from AS but also from OCD, ADHD, psychosis, and depression, as well as temporal lobe epilepsy (though that's not really related to autism). So not only do I have a disorder to deal with; I also have mental illness. But I see these other people getting along perfectly in life, while I'm struggling to get by, and it just makes me feel like I'm a failure, because my AS is not the cause of my troubles; it's just that I suck as a person. Anyone who says that it's a blessing, not a disorder, either doesn't actually have it, or only has a borderline case.
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11 Jul 2010, 11:06 am
I have either severe AS or PDD-NOS, depending on which doctor you ask, and I call it a blessing simply because it's part of who I am, and lets me see the world from my own unique perspective. I wouldn't be who I am without my autism.
I am disabled, and I need help for many things; but I do not consider disability inherently negative. You yourself say that your main problems don't come from your AS, but from other issues you also have (OCD and depression both have distress as a required diagnostic criterion). I also have ADHD, recurrent major depression, and PTSD; and when I can say I'm unhappy, it's usually due to the depression--though that's been in remission for several years now.
As I'm getting older, I'm learning more and more; and by the time I'm thirty, thirty-five at the latest, I may even be fully independent. I am living the life I want--not the life someone else says is normal. That's the important thing--not devaluing yourself as a person because society says disability is bad and wrong and must by definition make your life terrible. It doesn't have to be.
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.
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11 Jul 2010, 11:13 am
While I agree with the OP that it's frustrating, I think that in many arenas, you can't really control it. People search for a way to fit in, and some people are going to make autism that way, whether they have it or not. On a website, people are going to continue to "fake" their diagnosis, regardless of what you do. I think you just have to deal with it.
My HFA/AS group asks for diagnosis papers before they let people attend events in order to keep it "just us." People have even faked those! We all know who they are, but what are you going to do?
11 Jul 2010, 11:18 am
Who is it hurting, anyway? Most people who self-diagnose incorrectly are BAP* anyway, and so close to the diagnostic borderline that it doesn't make that much difference. They have so much in common with diagnosed people that we understand each other just fine. The only effect I can see is that people might get the idea that autism isn't severe sometimes--which is quite true whether they learn it from mild Aspies or from barely-misdiagnosed BAPs. Unless you consider it some kind of benefit to have people assume that you're a brave little soldier with a horrible illness, I really don't think that people identifying as autistic when they're actually almost-autistic actually creates any problems.
I guess maybe the group of people who insist that "autism isn't a disability" can cause some problems by possibly making accommodations and therapy harder to access, but they are not just self-diagnosed people; that group includes a lot of officially diagnosed people, too, and not just mild Aspies. Plus, the popular conception of autism-as-severe isn't going to be particularly easy to change; and by the time the public gets the idea that autism isn't always severe, there should be enough of us yelling for accommodations for mild- and moderate- support levels that these should remain available.
*BAP: broader autism phenotype. People with autistic traits but no impairment.
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Ambivalence
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11 Jul 2010, 11:24 am
Where?
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11 Jul 2010, 11:25 am
What about those of us who are qualified to diagnose others who self-diagnose? I also have temporal lobe epilepsy and ADHD, but was able to succeed academically and professionally, HOWEVER, personally things are a royal mess and have been for a long time. Bona fide or not?
*rolls eyes*
BTW, I don't feel "unique" or "special". I wish I didn't have to deal with it.
Sorry about the irritation. This bashing of self diagnosis gets old. Some of us aren't stupid or uninformed.
~Kate (self-diagnosed six years ago, "officially" diagnosed last week)
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11 Jul 2010, 11:30 am
MMhm. An Aspie with a special interest in psychology can probably self-diagnose with just as much accuracy as a psychologist--at the very least a psychologist who isn't an autism specialist; possibly even as well as a specialist. I think the OP underestimates the power of autistic obsessions.
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11 Jul 2010, 11:33 am
Let's just say one of my special interests, which I've had since age four, became my career in general. Another, which I've had since age 19 (I'm now in my 40s), became my specialization.
Yes, the power of autistic obsessions is often overlooked.
~Kate
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Ce e amorul? E un lung
Prilej pentru durere,
Caci mii de lacrimi nu-i ajung
Si tot mai multe cere.
--Mihai Eminescu
11 Jul 2010, 11:44 am
I also have ADD, learning difficulties, anxiety disorder, and of course mild AS. But I have struggled with getting jobs or finding one and I didn't have my first boyfriend until I was twenty and I couldn't even get a date in real life so I had to find guys online and that was how I met my husband. I hardly had friends in my teens. I am also shy too but people make me nervous. One thing I get sick of is people assuming mild AS means you have no issue with getting a job and other things and I also get crap from other aspies sometimes when I don't have a NT skill they expected me to have such as knowing a social cue or reading between the lines of something. Why? Just because I am mild?
That's why I hate functioning labels sometimes because it can be misleading and people may expect you to not have as much difficulty in one area. Like if a severe aspie knew a social cue but yet a mild aspie didn't pick up on that social cue, they expected that aspie to know it so what do they do instead? Treat that aspie like a bad guy as if he knew full well but did it anyway. I know there are aspies out there who have more AS than me but are better than me in some areas because they can go to college and not struggle with school work. Only things they may struggle with is having an ignorant teacher or not getting accommodations they need. I am sure there are mild aspies who can't drive but yet there is a severe aspie who can drive. Someone can have severe autism and not be violent and doesn't scream all the time while someone else with severe autism does.
11 Jul 2010, 12:17 pm
"Cyberhypochondriasis"? It's the same old problem that anybody researching disorders encounters; and it's well-known to both doctors and psychologists. If you're qualified to diagnose anything, you know about it and how to compensate.
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11 Jul 2010, 12:39 pm
You are not the bona-fide "holier than though in some distorted way" end all of say old, golden measure, final definition of someone with Asperger's Syndrome. You have no right to determine how affected someone is based on your perceptions of their life and problems based on what little information they choose to share here, and you have no right to minimize the problems of others in light of your own.
What if I did that to you? What if I, pegged as autistic in 1982 before the modern world had ever heard of AS, who met all the cirteria for AS before it was ever written down, and was so affected that I had a team of psychiatrists and psychologists by the age of 6, one of the first children in the country they tested SSRI's on for OCD, and SSRI's on in general, said to you "I don't think you really have AS because you don't meet my standards. I'm the real thing and you're just blah blahing for attention. You don't know what it's really like."
What if I further said "I don't care if you have a formal diagnosis or not because I have 30 years of experience with AS and 26 years of experience dealing with those in the mental health field and most of them are no more qualified to diagnose AS then a surgeon who took a three day course an appendix removal is to do an appendectomy."
None of that would be very nice would it? To declare your problems nothing and toss you out alone into the world...actually, maybe that would be ok because I declare people who really have AS have no issues being alone,and in fact prefer it since I am so high and mighty and have the right to say so and you obviously don't because you don't really have AS.
IN FACT by DSM-IV standards, having psychosis and AS type symptoms EXCLUDE ones from an AS diagnosis. If you have psychosis and AS they call it either schizophrenia or schizoaffective disorder depending on whether or not you have mood-swings. So your clinicians WERE wrong, and not only wrong, blatantly wrong.
You can look it up for your high and mighty self if you don't believe me.
How do you feel now?
I welcome anyone with social problems into my company with the exception of self righteous @-holes.
Last edited by Chronos on 11 Jul 2010, 12:47 pm, edited 2 times in total.
11 Jul 2010, 12:42 pm
No one can MAKE you feel like failure by co-existing. How you view yourself, the world is what makes you feel a certain way. Simply put, you're responsible for your own emotions, and the sooner you figure that out, the sooner you'll feel better, because there's always gonna be someone who rubs you the wrong way. That's the way it is. I'm sorry that you're having a rough time with things, but it doesn't make it right to take it out on other people.
These threads are one of the reasons I don't visit WP very much anymore. Yes, they've always been here, but not at such a high frequency as the last year or so. It gets so old.
11 Jul 2010, 12:48 pm
I wish this forum had one other choice under the profile diagnosis field:
NOT DX'd, but Identify with Asperger
Kind of like in AA where most identify by saying, "Hi, I'm so-and-so, and I'm an alcoholic," and others say, "Friend of AA."
There's no room in the choices given on the profiles here for those who are pretty sure they don't have it, but simply identify strongly with Aspies. Those for whom, as the OP described, feel a little "off" from the rest of the world, but function fairly well in their lives.
None of the choices given in the profile really fit that scenario, yet I believe we have to choose something there. (?) "Not sure if I have it or not" doesn't cover those who are pretty sure they don't.
I can see where it could be easy, once joining up here, to start identifying with strongly with so many people here, even though you may not have Autism, to start posting the term "we" frequently without thinking about how that appears. That might sound like "faking it" to a lot of users there, but it doesn't necessarily mean faking AS is the user's intention.
Keep an open mind is all I have to say. After all, it takes an open mind to accept the existence of AS to begin with. A lot of folks can't even do that.
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I'm not likely to be around much longer. As before when I first signed up here years ago, I'm finding that after a long hiatus, and after only a few days back on here, I'm spending way too much time here again already. So I'm requesting my account be locked, banned or whatever. It's just time. Until then, well, I dunno...
11 Jul 2010, 12:51 pm
Thank you, I like to think 7 years of research count for something.
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