I don't have any problem with people who have diagnosed themselves as having AS, as long as they have thoroughly reviewed other possibilities as well and take a critical approach to their methods of determining a specific diagnosis.
I am self-diagnosed as having AS, though I was officially diagnosed with ADHD. Based on my extensive analysis of the characteristics of different possible conditions, and studying my own characteristics, I believe the ADHD was a misdiagnosis.
I got the DX at the height of the ADHD hype that occurred in the late 90s and early 2000s, at a point when I was suicidal and failing just about every class that I was in (so they wanted to give me some kind of diagnosis as fast as possible to help get me out of that situation).
Looking through the DSM criteria for ADHD myself, it just doesn't fit me very well. Neither did any of the "treatments" they tried back when I was first diagnosed - dozens of medications, therapies, special classes, etc. - they all made me function even worse, while all the other ADHD kids I knew seemed to thrive under their own treatments.
Now I am in college and I need to take advantage of the Student Disability Center, and I want to get a new, correct diagnosis of AS within the next couple of months. It seems a few members here have hostility towards self-diagnosed Aspies, but I couldn't care less.
What they think doesn't affect me or anyone else... They seem to forget that AS belongs on a spectrum of conditions and, by definition, there is no dividing line between NT and AS. Nor does obtaining an official diagnosis prove or disprove you have a specific condition, as someone mentioned in that other thread. Someone who is easily diagnosed in one place and time might find it impossible to get officially diagnosed in another, and that's just the way it is.
Whether someone is self-diagnosed or officially diagnosed, it doesn't affect who they are, who they were born. BardWolf in that other thread was complaining that she was "given" autism when she had her diagnosis, which is a completely absurd idea. Even if she had never been diagnosed officially, she would still be the exact same person she is today. Genetics don't care about diagnoses.
All that said, some non-AS people try to use the condition as an excuse for their laziness, unemployment, shortcomings, lack of friends, or what have you, and I think that's what gives the rest of the self-diagnosers a bad rap. I do believe that AS is underdiagnosed, particularly in women, though it is important to remember that there are people who don't have AS but are going to try and obtain a diagnosis. It is like this with every medical condition.
More thoughts on this subject might be coming later.
I suppose I can add some to the other side of the debate.
The problem with self DX is that while you might end up knowing all there is to know about AS and autism, a doctor has a wider knowledge of other conditions that are simular(they should. If not, refer to specialist). For example, while you diagnose yourself with AS, you might instead have social anxiety which also explains 'marked imparement of social interaction' like AS, but this can be treated so you miss out on possible medical help. On the other hand, you might be really an NT, but think you're AS because you don't have enough knowledge of what AS really is. You might think being a little introverted and enjoying maths class makes you an aspie. And yes, it is hard, as autism is a wide spectrum.
Having said all of that, I don't think self diagnosis is really much of a problem and I have a feeling its more likely to be right. But if you insert 'major depression', 'bipolar', 'OCD', etc, instead of AS into the above catagory, there is a much bigger problem. These conditions are actually quiet hard to diagnose, unless you have a severe version (it's easy to see if someone is *really* depressed). For example, bipolar is hard to distinguish between unipolar depression (is it hypomania, or is the patient normally a happy person) or even just regular mood swings. Or it may be a non brain illness, like anemia that's causing the problems. Even a lot of psychiatrists, who are supposed to be specialists, muck it up. Anyway, I'd trust someone who dxed themselves with AS rather than OCD or ADHD.
But does it really matter? I don't get too worried about what people say on the internet. Doctors may be wrong in the diagnosis. Diagnosis matters in some places and not in others. But I don't think its nice to 'kick out' people who are self diagnosed. And I am curious... what disorder has the best self diagnosis rate? I heard that people are pretty good at autism, but that's just the word from forums. I wonder what research has to say?
Well, not official, but in my case not exactly self-dx, either. The first to suggest it was a family friend who has known me since I was in middle school. She heard about it on some radio program and passed her finding along to my mother. When it was passed along to me, my first reaction was something like "Okay, she's really gone overboard this time." That was five years ago. In the time since, I've heard a few radio programs myself and also read some articles that I happened upon. That, and being kept awake at night by things that happened 20 years ago when I was a school misfit, lead up to me searching the Internet for info and finding, among other things, this site.
The family friend is someone who was always quite knowledgeable on stuff like this, and well-connected to the school system. High-spirited, but serious as a heart attack when necessary. She wouldn't make something like this up. If my status is in dispute, maybe I should just let you argue with her.
I thought about getting tested, but I decided against it because in my particular situation, there is nothing to gain and alot to lose. It shouldn't be like that, but it is and probably will be for a long time, so I have no choice but to keep my suspicions off the record.
Besides, it seems everybody's got an agenda. Compare Autism Speaks ("You can't possibly be Aspie... you're employed.") and FAAAS ("Oh boo-hoo... my dad was a quantum physicist and it was just terrible!") and you'll see what I mean. Two obviously different agendas, but both are hostile.
I've seen a few officially-dx'ed people on here say they're still not so sure. Obviously, it depends on who tests you. That's why I don't see a point to it until there's a physical test that can be done with an EEG or a brain scan. Last I heard, machines don't have agendas.
WHY SELF-DX COULD BE GOOD:
I don't say that I 'have' AS - I typically say I have many of the traits associated with those on the AS spectrum. As I learn about traits from other Aspies and the different ways Asperger's may manifest it seems to apply more - at the same time I am learning to manage these traits and see them as positive and twist them around for use positively so that I appear less and less Aspie.
For instance: Now that I know I can't read other people, I also know that other people who are quiet may be going through something similar and that might be why they aren't talking to me.
I still can't banter with an outgoing, fast talking social climbing elitist, but when it comes to other shy or quiet people (who may have aspie traits), I am more comfortable approaching them, introducing myself and in essence reassuring them that I am interested in talking to them..
Self-dxing traits or having AS and hanging out on boards with others who have AS can help people work through the 'why's' so that we can figure out what to do about it. And I think for the most part that is what most people here do, be they officially -dxed or not.
WHY SELF-DX COULD BE BAD:
For a few people, however, a wrong self-dx, could be an 'excuse' for certain behaviors when really the person has something else that is treatable that they should be getting help for.
Saying AS is at fault for all someone's problems is what the CURBIES do, not AFF.
While I don't see how someone would want to join an 'Aspie' club, I suppose it's possible... but since Aspies aren't the types of people who have a superficial we like you because you're one of us mentality, I don't see what the fun would be in that. Most Aspies look at people as individuals and though the frustration with NT behavior can bring solidarity the anti-NT as a group is frowned upon by most.
I actually tend to think that self-diagnosis requires more reflection on things than official diagnosis does. And I even move away from the idea of self-diagnosis into self-identification because diagnosis sounds really medical. Being officially diagnosed did not require my comprehension of what diagnosis was being given or what it meant. I didn't have to know anything about autism, and I really didn't know much of anything about it. I didn't even have to participate in the discussions that initially led to the diagnosis. So why is that more important than the understanding I gained later by finding out more about autism?
Brilliant post.
Being diagnosed is a very passive act -- it requires nothing of the diagnosee. You can diagnose a tree. You can wander in, get your diagnosis and wander out knowing nothing but what word they stamped on your forehead.
To arrive at a diagnosis through one's own self-examination and inquiry requires much more. And I agree that it has much to do with taking an active, decisive role indiscovering and claiming your true self. And, god knows, not everybody can do that. But it seems to me that there's a thread of maturity and high intelligence that runs through the self-DX'ed people here -- at least the ones who come immediately to my mind.
Is there a chance one's self-diagnosis is "wrong"? Yes. And there is a chance it is wrong when a doctor declares it, too. but at least through the self-determination process you learn more about yourself than you might ever know otherwise.
All that said, some non-AS people try to use the condition as an excuse for their laziness, unemployment, shortcomings, lack of friends, or what have you, and I think that's what gives the rest of the self-diagnosers a bad rap.
Maybe I misunderstand - but this seems a bit harsh. I don't feel people use it as an excuse - people genuinely struggle.
I see how it could be understood that way. What I meant to imply that some people who actually know they don't have AS so they can have an "excuse" for not working or anything, sort of like how some people will fake a bad back so they can get paid time off from work or get welfare checks. I didn't mean to include people who genuinely believe they have AS and actually do struggle in these areas, as opposed to people who don't put any effort in at all for no reason.
Corrected version: "What I meant to imply that some people who actually know they don't have AS say they do, simply so they can have an "excuse" for not working or anything..."
My mind is working faster than my hands right now.
Also, there's supposed to be a "was" after the "imply". Crap.
I seem to be the only one here who takes everything personally, suggesting this is un-Aspie-like in nature and perhaps something an Aspie wouldn't do. I also seem to be one of the most emotionally volatile members, one of very few who express feelings so readily.
Communicating in ways different than other members here goes against the validity of a self-DX. That's a concern, for me anyhow.
I used to be a lot more like you than I appear now.
I've learned not to take things personally because I figured out that sometimes other people just have issues and sometimes they are projecting imagined faults on me and as a rule, other people simply are not focused on me as I am.
I've also learned not to be so expressive of my emotional volatility because of the negative reaction and rejection that its' gotten me. But people who know me well still see it and it comes out in my creativity.
On another forum, I copped some abuse for saying I had an official diagnosis as with a number of people, a self diagnosis was obviously an item of personal pride. So it can go either way I suppose.
Anyone who is interested in health insurance & autism issues in the US can read:
http://www.patientcenters.com/autism/new...rance.html
This article makes me wonder if one of the reasons insurance companies refuse to pay for autism is due to panicked parents and charlatans driving up the money spent with a "sky is the limit" mentality. If parents are demanding a million dollars for treatments with no end in sight, why would insurance companies volunteer to step up to the plate? I suppose they could set limits like they do on other things, but that would be hard to measure. There isn't a standard treatment or standard cost vs benifit. Diagnosis is also a tough one.
I do know all about demanding parents, but both aba & floortime have efficacy data, and are not considered expiremental or expensive. I do use aba for specific behaviors (initial PECs or a maintaining seat in classroom setting, but floortime is wonderful for ealy intervention. People who limit early intervention in autism will burn in hell.
Depends what the early intervention is. People do need to be sensible about it and not demand unlimited amounts of funding. I don't see the "need" for 40 hours ABA a week for instance, chelation, or anything similar and highly intrusive.
Janet, I was an aspie kid who thought most pretend games were silly and pointless. However, I had an extensive family of imaginary friends and had lots of imaginary worlds which I stopped communicating to other people after I was about 6.
I always wanted to do things that were "real". I think some other aspies are the same. How would you be able to get them to "pretend" unless there was some way to find something they could identify with.
I didn't find dolls very credible because they didn't have genitalia. Nowadays, it's possible to buy "anatomically correct" dolls and I think I would have related to them better.
Would you use gender-neutral pretend games if you had a girl who didn't particularly care for "girly things" or a boy who didn't like toy soldiers and stuff like that but liked playing with dolls and soft toys instead or liked dressing up?
I'm so glad the "psychologist" who told me all my social problems were caused by me being fat and ugly "went to school for years"... nobody can be that big a ****wit WITHOUT training.
Or the woman who told me that all that was wrong with me was I didn't dress well enough or the guy who said I continually exaggerated problems and there was nothing wrong at all. Seems as if they were REALLY well educated and trained in dealing with mental health issues.
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