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TriforceOfPower
  • How many people on here are self-diagnosed?
  • What do you think of people who self-diagnose?
  • How do you deal with people who disapprove of your self-diagnosis?

 

 

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Kuribo [old account]

I'm officially-diagnosed, but this is a topic that matters to me.
 

What do you think of people who self-diagnose?


I have no problem whatsoever with self-diagnosed people. I usually advise people that they needn't bother seeking an official diagnosis unless doing so would help them to access services and support, particularly if they live in a country where it costs money to get an assesment. There exists a small minority of people who falsely self-diagnose for attention, but they really are just a small minority.

I often feel sorry for them due to the unjustified hostility and bullying they find themselves victims of on sites such as WrongPlanet.net.
 

How do you deal with people who disapprove of your self-diagnosis?

 

Even as an officially-diagnosed person, I can't stand people like this. When a self-diagnosed person comes to a forum for support and ends up being deliberately made to feel unwelcome by some asshole who thinks he automatically knows them better than they do, I always try to stand up for the self-diagnosed person. Moderators on other sites aren't nearly as strict about bullying based on diagnosis status as they should be.

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RiRi

I'm self-diagnosed. The reason is because, like Kuribo said, I just found out not too long ago and as an adult there aren't many services provided. The only reason why I think I would need an official diagnosis is if in case someone at work maltreats me or something along those lines. Getting a diagnosis is expensive out here especially since I have no medical insurance. 

 

What I think about people who self-diagnose is that they must have their reasons for doing it as such and I don't think negatively of them. I would advise, however, that if they have the money and or resources to get an official diagnosis to do it. 

 

How I deal with people who disapprove of my self-diagnosis is I ignore them. Unless, it's a really close family member, I would try to prove it to them. Otherwise, I'd just let them be because even sometimes psychiatrists/psychologists have misdiagnosed. I think that when we objectively see ourselves, we are the ones that know more about ourselves than anyone else. 

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Nesf

I'm diagnosed officially, but I wasn't diagnosed until 2 years ago at the age or 41. Before then I was an undiagnosed, then self-diagnosed Aspie, now I'm a diagnosed one, but I've always been an Aspie. It's a condition for life - I wasn't any less an Aspie when I was self-diagnosed than I am now. I know that there are many self-diagnosed or late diagnosed older adults, due to the fact that AS wasn't recognised as an officially diagnosable condition until 1994. I think that about 90% of those who self-diagnose do actually have ASD - mostly they have done a lot of research before they come to that conclusion, and it's not a conclusion one comes to lightly - after all it is a lifelong condition with many implications for the person and their family. And even if it turns out that one doesn't have ASD but something else with similar symptoms, such as ADHD, OCD or Social Anxiety, or if they have ASD but have developed enough coping devices for it to be subclinical, that person may still have considerable difficulties and need the help and support of the ASD community. Also, it is unfair to judge a person on their diagnostic status where a diagnosis can cost a lot of money and it can be so difficult to get referred to the right specialist, especially as an adult. If it hadn't been for my mum helping me out financially I may never have got diagnosed.

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DominikaCupcake

I am self-diagnosed and i've been thinking of getting an official diagnosis, but i am still considering pros and cons of such a decision. Like Anna says, there is no much help for adults with aspergers and since i lived 21 years without this help, then i might as well survive the rest of my life. Besides, if i'll have the official diagnosis it will help me to get employed as the government will give me the job or just money so i could sit home and do nothing for the rest of my life. But that's not what i want and with the diagnosis you can't do some types of the jobs here in Norway which means that i qualify only for things that stereotypical people think every Aspie is good it. PCs and engineering. It pisses me off that some people think this way. I want to be a teacher and i think that staying self-diagnosed would be the best option for me.

 

However, maybe if i'll get official diagnosis people will start taking this seriously, because so far every laughs at it tells me that i'm just odd and should hang out with people more. When i was talking with my doctor yesterday and i decided to tell her that i think that i have aspergers and i am considering getting the diagnosis, she asked me: "Who told you this?". So i told her that i'm sef-diagnosed and she replied: "And how can you possibly now? Please, stop wasting my time."

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Dr-David-Banner

I really don't worry about my self diagnosis situation. I also tend to have strong feelings over the way some countries seem to be charging parents large sums of money to get their kids diagnosed. To my mind it's a bit like making money out of an individual's struggle to cope with a situation that is genetic yet can cause significant stress. Another bone of contention I think is I was never offered any real help with autism spectrum as a kid even though it was obvious there was an issue. True, there was no awareness of aspergers back then but eventually, as information sifted out online, I think it became my discovery. It was something I pieced together with an open mind over a few months. Also, I think the main thing always to have in mind is all of this boils down to major difficulties in social interaction. The emphasis is on how to deal with that. Usually those of us who either have a diagnosis or not share significant difficulties as to employment, social interaction friendships and so on. I think my main priority is finding an explanation and coping strategies for that.
Funny thing is, I now seem to have been "outed". A few days ago a woman in a shop who knows me started talking to me about autism. She kept saying she'd heard people with autism can be really clever and do all sorts of things and I got the impression she wanted to get me talking about it. Maybe she had family who had aspergers. The truth is, though, with me it's not hard to work out something isn't quite normal. People have found me strange for years and that includes family. I seem to have it very strong and impossible to hide no matter how I try.

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Xenolith

I do have problems with self-diagnosis. Obviously there are going to be plenty of people who have self-diagnosed correctly, and I'm not making any accusations that people here don't actually have Asperger's. However, as most of you will be aware, Asperger's is being massively overdiagnosed. I can't help but feel that a lot of people who are just socially awkward, quiet, introverted or just plain unfriendly or tactless masquerade around with the label of Asperger's completely unfairly. Plenty of people aren't social butterflies, that doesn't mean you've got a mental health condition. 

 

If you think you've got Asperger's and it's imposing a serious impact on your life and well-being, you should get a formal diagnosis. I don't understand how self-diagnosis can really help. Unless you've got documents of proof, your self-diagnosis isn't really going to get you any support.

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Kuribo [old account]

However, as most of you will be aware, Asperger's is being massively overdiagnosed.

Sources?

 

I don't understand how self-diagnosis can really help.

It can help people to understand why they are the way they are and connect with others like them online.

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RiRi

In addition to Kuribo's response..

 

I can't help but feel that a lot of people who are just socially awkward, quiet, introverted or just plain unfriendly or tactless masquerade around with the label of Asperger's completely unfairly. Plenty of people aren't social butterflies, that doesn't mean you've got a mental health condition. 

 

Who have you seen are this way? or do you just feel like this is how it is?? All those things you've mentioned "socially awkward, quiet, introverted..." are not the only things that describe a person with Aspergers (I hope you know that). In person, I could possibly be a "social butterfly" that doesn't mean that I'm neurotypical/don't have Aspergers.

 

 

 

If you think you've got Asperger's and it's imposing a serious impact on your life and well-being, you should get a formal diagnosis. I don't understand how self-diagnosis can really help. Unless you've got documents of proof, your self-diagnosis isn't really going to get you any support.

 

I agree with Kuribo, a self-diagnosis, it has loads helped me. It has given me some insight as to why I act a certain way and it has also helped me "correct" some things. If I had money, I would have been gotten a diagnosis. As a matter of fact, I'm saving up to get an official diagnosis. At this point, for me, there's limited, if any support outside, not much for that matter. Also, I don't think there's been over diagnosis of Aspergers, if anything I'd say there's been an under diagnosis. However, a "professional" telling me I have Aspergers doesn't validate that I have it/don't have it. These people have misdiagnosed many times leaning toward the "you don't have Aspergers" side, at least speaking from a girl's point of view. http://www.ncbi.nlm.nih.gov/pubmed/21664105

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Kuribo [old account]

Who have you seen are this way? or do you just feel like this is how it is??

 

Chlorophile, something I forgot to mention is that I regularly attend social groups run by a service with over 800 registered users. Not once have I witnessed the phenomena you describe.

Correct me if I'm wrong, but didn't you say that you've only met something like five other Aspies at school?

 

However, a "professional" telling me I have Aspergers doesn't validate that I have it/don't have it. These people have misdiagnosed many times leaning toward the "you don't have Aspergers" side, at least speaking from a girl's point of view. http://www.ncbi.nlm.nih.gov/pubmed/21664105

When I was five years old, a doctor told my mum that it wouldn't even be worth getting me assessed, and that I showed no signs of AS whatsoever. Thankfuly, a senior professional happened to be working in the same room, and realised how absurd that statement was. If it weren't for her objection to the first doctor's conclusion, we likely would have had to fight for several more years in order to gain access to the necessary support services.

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The Id

 I don't understand how self-diagnosis can really help. Unless you've got documents of proof, your self-diagnosis isn't really going to get you any support.

 

Self diagnosis was one of the best things I ever did, even though it happened completely by accident. It explained so much about myself that I hadn't understood previously and opened up a whole world of understanding because there are so many others going through the same things. I don't want any support, in fact quite the opposite in that I recognise the trap of getting support means in some way giving up the idea that I can be a useful person on my own.

 

Previously I had referred to my aspie traits somewhat jokingly as SPS or "shit parents syndrome" because I can connect the majority of aspie behaviours to things that locked in as habits at a very early age due to the way my parents treated me. I have seen this in other people too, including one child that had given up speaking at age 5 because his parents were so horrible to him. He was officially 'diagnosed' with AS but is definitely suffering from SPS and is now set on the life path of support workers and coping strategies.

 

I certainly agree with you that there is a problem with mass diagnosis of anything that looks aspie-ish, however there is a significant difference between a professional wanting a simple solution to something he can't do much else about and somebody who is genuinely wanting to find out why they are the way they are.

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Xenolith

Sources?

 

I don't have any sources because to the best of my knowledge, no study has ever been done on this topic. However, I will draw parallels to ADHD, a condition that very obviously is being over-diagnosed. Both ADHD and Asperger's have seen a similar kind of acceleration in diagnosis in recent years. There are a number of reasons why ADHD is being overdiagnosed. The pharmaceutical industry is partially to blame, creating an ADHD scare in order to sell more drugs. And of course, anxious middle class parents desperate to give their children labels put a massive amount of pressure on psychologists to give their children diagnoses. 

 

I am absolutely aware that the increasing rate of ASD diagnosis is partly to do with changing attitudes towards autism and making diagnoses more socially acceptable. However, I simply do not believe that this is the only cause of the increase. The statistics depend on which journals you use, but a relatively conservative article by Nature shows an almost 5000% increase in ASD diagnoses over 30 years, and an almost 50% increase in the space of 2 years. I cannot believe that so much social change has happened in two years to increase diagnosis rates by that much.

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Dr-David-Banner

To be honest, I've always been wary of aspects of psychology and psychiatry. I often read papers and essays on Aspergers written by medics and often find myself disagreeing. Like the idea someone who has aspergers can't understand idioms so you have to take care not to use terms such as "in a pickle", for example. Sure, I have met people who do sometimes take idioms literally but most people on the spectrum will understand if you say you "let the cat out of the bag".

I admit, diagnosing other people is hard but I think self diagnosis is far easier. Usually the people who find these kinds of sites have been searching for answers to major difficulties. I don't think they come because they think it's cool to adopt aspergers culture or something. In time they are going to meet other people on the spectrum and find answers to questions.

Myself, I never discuss it outside of this site. Not even family.

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Jasmine

I'm self-diagnosed (for now). I actually wrote a blog post (part of my high school senior project) about self diagnosis of autism. If anyone's interested, you can read it here. I still feel the same way I felt when I posted that months ago, however I also don't like when I see people claiming autism (or other diagnoses in general). I've been seeing this a lot lately on another forum I visit and it's really been bugging me. I think it's because it's almost as if they're bragging about it? And that really doesn't make sense to me.

 

One guy was going on about how he's so "high functioning" and how he scored like a 36 on AQ test.... And I was thinking to myself, "Well, all Aspies are high functioning. He obviously doesn't know much about Asperger's." Not to mention that a 36 is a relatively low score, considering the highest is 50. My score's only about a 34.

 

And then another girl says she has 2 autistic siblings. She's talked about them for a while, but has also crictized their obsession (Minecraft) and how they won't bathe at times because of it. I recently posted how I identify as having Asperger's and suddenly she says she has it too. My friend (who I suspect is on the spectrum as well) didn't believe her anymore than I do. She's pretty attention seeking, and like I said, she's brought up her autistic brothers (it used to be only one, but now it's two) before, and never mentioned herself also being autistic. Not to mention that it doesn't make sense for her to critcize her brothers' obsession if she's also autistic. She says, "My brothers are autistic, too. I have aspergers, but it's so borderline we aren't sure whether I'm very high-functioning or whether I'm not autistic at all." (This girl also claims to be a sociopath - she's certainly not one by the official definition of it. If anything, she's a compulsive liar. She claims something new everyday.) There's some other people on this forum as well, and my friend and I both think they could be aspies. They're textbook cases of it.

 

So basically, I support self-diagnosis when the person is actually identifying with something they have. I don't support self-diagnosis of disorders you don't have (this seems to be a new trend with some younger kids - the girl I'm talking about is young, by the way). I don't like when people lie in general. And being a psychology major and nerd (since it's an obsession of mine), I especially hate when people claim disorders and don't even have a basic grasp of knowledge about what the DSM requires for diagnosis of the disorder. I have a problem when people DON'T do research. They see some disorder on TV, and then suddenly they think they have it because they think it makes them special or they want to be cool. This is definitely a new trend and it's NOT just with autism. It's with mental disorders in general. Some people are also claiming gender identity related disorders that they obviously don't have (because yet again, they don't actually do research) and it just really bugs me. >_<

 

I'm self-diagnosed, but I've been told it's worth looking into by two psychologists, and so I plan to do so when I can afford it. One reason I actually need a documented diagnosis is for some of the autism and neurological disorders scholarships (because they all require a documented diagnosis). Another reason I need an official diagnosis is so I can finally tell everyone who told me "You're not autistic" that they're officially wrong.

Edited by Jasmine
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Nesf

I think that if a person self-diagnoses him/herself with AS and actually does have it, he or she is very likely to obsess about it, as it is in the nature of AS to obsess over things, and will be very well informed. So if you see a self-diagnosed person obesss over AS, then they probably do have it. Also, I think that those who join forums like this one are also more likely to actually have it, because in joining the forum they are expressing a lot more than a passing interest or suspicion.

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Kuribo [old account]

Also, I think that those who join forums like this one are also more likely to actually have it, because in joining the forum they are expressing a lot more than a passing interest or suspicion.

 

I agree. Some degree of skepticism is understandable in real life, but I'll never understand the hostility towards self-diagnosed people in online communities. Why would someone join a forum, post helpful content and make an effort to get to know people if they were faking it for attention or looking for an excuse?

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Dingo

I am currently just self-diagnosed.  I tried to get test back in 2010, but it was just with a general psychologist and he diagnosed me as just having a lot of anxiety, but he said if the anxiety gets under control and I still think that I am, then I could come back, but I never did.  But about two weeks after I joined this site I found someone who is a specialist on the subject.  She deals with people on the spectrum and she travels around the country to speak on the subject and I think she even teaches at a university.  I got in contact with her through a government website and she put me on her waiting list, but it is a long wait as I don't think there are many people around here qualified to diagnose people.

 

So, for now I am self-diagnosed.  Does it seem to anyone that I am wrong about that?  I have learned quite a lot since I joined here and it has helped me a great deal and I don't have that feeling that I don't belong like I have with any other group.  To me, joining this site seems to back up my self-diagnose.  I don't know what to think if it turns out I'm wrong.

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thegingerone

I'm sort-of self diagnosed, but it's not something I have ever talked about with anyone, though I do want to get tested.

Although I do not have any information to back up the matter, I believe that self-diagnosis is fine so long as it is not used as an excuse for something, much in the way that a formal diagnosis would.  If the person is happy with self-diagnosing, then I don't see a problem, but you need a formal diagnosis to gain access to certain support and things, so If someone wants to get tested I think they should be able to.

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Jasmine

I think that if a person self-diagnoses him/herself with AS and actually does have it, he or she is very likely to obsess about it, as it is in the nature of AS to obsess over things, and will be very well informed. So if you see a self-diagnosed person obesss over AS, then they probably do have it. Also, I think that those who join forums like this one are also more likely to actually have it, because in joining the forum they are expressing a lot more than a passing interest or suspicion.

I agree. The problem comes with the people who don't even know what Asperger's is. They know it's autism and that's about it. That's what makes me suspicious. As for the other forum I was talking about, it's for a Disney game I played as a child. It has nothing to do with autism or anything.

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the strangest man

If self diagnosis is as valid as a professional diagnosis then should the opposite be valid; you may diagnose yourself as not having an ASD even with a professional diagnosis indicating you have? I would postulate that both are as dangerous as each other but at different times of life. For the former in middle to late age, while for the latter in the teenage years.

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Dr-David-Banner

From the information I found over time and the odd papers and essays I read by psychologists, I don't think doctors, psychiatrists or analysts have some sort of final say in a matter that is so complex. There has always been accurate diagnosis and misdiagnosis.

The main issue over diagnosis, as has been pointed out, is it does allow you to get some help with employment. I mean, I am not formally diagnosed so found myself experiencing problems with employment but nothing I can really turn to. Like working in a hotel with symptoms of prosopagnosia and you don't know if the person you're talking to is the same one you already handed the key!!

I was seeing psychiatrists in the eighties for severe anxiety and was on meds and stuff. Back then nobody knew about aspergers so my diagnosis was for anxiety and panic attacks and so forth. In some ways, it made me think that probably my background is well documented so even if aspergers were left out of the equation, it's pretty clear there were major issues going on for some years. Should I formalise it with the term Asperger syndrome? I'm told there is a big waiting list and you may have to bring family to an interview. My family don't know I have aspergers and would have a hard time understanding it. I think at some point I became more interested in dealing with the situation I have than attempting to get recognition. So, diagnosis is on hold. Aspergers for me is a problem but it's also an advantage in other ways - I view it more positively than you would imagine at first.

The symptoms continue as ever. I still have to fight stims in public and very often slip into it. I still am sensitive to noise and lately light. I still sometimes fail to recognise family or friends for no apparent reason. I still get all sorts of odd looks, still no girlfriend and very limited social life - hence time spent on music.

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katlou

Hi, it's re-assuring to see so many self diagnosed people sharing their experiences. I wouldn't say I was actually self diagnosed because I wouldn't validate it by saying it to anyone unless I had a professional diagnosis anyway but that is simply my personal lack of confidence but the online tests and descriptions have really helped me feel some relief for now. It's also really nice to read some genuine support from professionally diagnosed people.

I actually started to notice parallels between my feelings/behaviour and aspergers, not because I was looking for anything on aspergers or even really knew anything about it but was searching online for some easy to understand advice on certain things that my partner would say about my behaviour leading up to and during conflict. I came across a few bits and pieces and would dip back in again when I felt insecure about not being able to change certain behaviours then when I saw the information and online testing for females, so much just fell into place, flashbacks of conversations, realising that it's ok to

acknowledge certain otherwise inexplicable feelings.

I think on the whole that people which make up illnesses or conditions have another undiagnosed condition and that if someone really wanted attention they would choose something dramatic

and more widely understood.

I feel it's probably a lot more common to stumble upon aspergers as a possibility as an adult than know all about it for some reason and just think "i have that".

Maybe I'm being too personal about it but it seems more logical to me than people just making it up.

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katlou

Actually, now I just bring up the list of female aspergers traits on my phone occasionally to remind myself that I was never looking for excuses, that I fit into most of these descriptions and that whilst I am growing the courage to go to the doctors I can re-assure myself that all the things I have tried to ignore about myself for years may really just be the way I was made and that in itself has helped me see what another person may be experiencing when with me.

Another big sign is that my closest friend who is nothing like me in so many ways shares almost all of the recognizable traits, it's really weird, things I just thought were 'our thing' seem to be typical aspergers things not to mention that our partners who don't know eachother have said the same things about us, sometimes exactly.

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Dr-David-Banner

There is a very fine line between very high I.Q. socially inept people and autism spectrum. There are children who develop major difficulties specifically due to the fact they are so much more intelligent than their classmates, friendships become almost impossible. Even trained psychiatrists may have difficulties distinguishing this from aspergers, even more so if the two overlap. And, yes, these people have in the past either underdiagnosed or misdiagnosed.

In Japan there is a new problem called Hikikomori whereby young Japanese kids are developing symptoms of aspergers due to never leaving their bedrooms. They spend hours and hours on a PC and no desire to work or go to class. It's been found they develop extreme social difficulties. One Japanese teen even went berserk when his internet was cut off.

Personally I wouldn't ever like to get into questioning a person's self diagnosis. At first when I diagnosed myself with A.S. it was a big thing for me and I'd get upset when people refused to accept my conclusions. I got stuff like, "you can't have aspergers as you can ride a bike and speak another language and so on." I had one G.P. scoff at my diagnosis but later I found his own idea of autism spectrum was pretty basic. Soon as I met other people online I found they were just pretty normal like me - just socially at odds with everything. These days I learned it's best not to mention it to anyone, not even family. It's a very misunderstood condition. I suspect I have other possible conditions apart from aspergers.

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Nesf

There is a very fine line between very high I.Q. socially inept people and autism spectrum. There are children who develop major difficulties specifically due to the fact they are so much more intelligent than their classmates, friendships become almost impossible. Even trained psychiatrists may have difficulties distinguishing this from aspergers, even more so if the two overlap. And, yes, these people have in the past either underdiagnosed or misdiagnosed.

 

Yes, I have a student just like this, and he plays up a lot. His parents had him tested for ASD, and the conclusion was that he isn't on the spectrum, but has some ADHD traits, and his social difficulties are the result of his high intelligence.

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