The Stigma of Self-Diagnosis

[Simply a Bibliophile]

Has anyone else observed a stigma associated with being a self-diagnosed Aspie? Such as people saying things like:

"You're just looking for attention."
"You're just making excuses."
"You don't really have Aspergers."
"You're just hopping on the bandwagon."
"If you haven't talked to a psychologist, it's not real."
"You want people to think you're a tortured genius. You're really just annoying and socially awkward."

I don't tell people that I'm an Aspie for this reason. I see people posting comments like these on boards and articles online and I'm afraid of receiving this reaction should I ever "come out". There's a genuine difference between being a run-of-the-mill hypochondriac and actually having the disorder.

 

[King_Oni]

You don't think that people who have an actual diagnosis, suffer from the same stigma?

A bit more on a related note; I'm not sure if this sounds logical to everyone, but to me it does... from what I've heard healthcare and therapists are quite expensive for a lot, and as such we have a lot of members on AC that are self-diagnosed, because they can't afford a therapist to get something official. Then... to me it's no wonder people will self-diagnose. But that's just a minor thought I had.

 

[smith2267]

I freely admit I'm annoying and socially awkward
I also have an official diagnosis. But it doesn't stop people from accusing me of faking it.

 

[Cerulean]

King_Oni you're right about the expense, at least where I live. I just got a new job and I'm waiting for my health insurance to kick in before I go and get a real (aspie or no) diagnosis from someone. But I do know that I meet almost all the current diagnostic criteria for it, so a diagnosis will just be a formality.

 

[Loomis]

If someone says they are on the spectrum I believe them whether they have a diagnosis or not. I do have an official diagnosis of Autism 299.00. I think I would have been diagnosed as an aspie except my evaluator was being foresighted and used the new proposed DSM V which eliminates aspergers.

 

[Deno]

That's true, I'm sure individuals with an official diagnosis could still be called liars. This is something that bugs me a lot, as when I first realized this is the diagnosis that fits, people prefer to believe that is not the truth. Rather frustrating, so I decided to keep it more hush hush.

 

[Geordie]

As a self-diagnosed person with bipolar disorder, in addition to being diagnosed with AD/HD and autism:

- You don't fool us, you seem always happy.
- C'mon, you're just fooling around, making lots of excuses to not do well in life.
- You're just a lazy slacker.

This is why I often take a lot more time to finish assignments and even tests than others, especially after I suffered from depression when I was in high school - it's not too much of the difficulty level of the work, but more of being lethargic and burdened by the weight of my inner struggles. No one will care. And I don't need diagnosis, since my main disorder is deemed to be autism.

Self diagnosis has its own limitations. You don't get official support for your conditions. It is important for me - I need to know the reasons why I can get 'high' at night and get so sluggish in the day.

But given that, well, there is no real support for people with bipolar disorder, even more pertinent in the era of stanardisation and all the motivational stuff - it's even harder to admit, you have limitations and some limitations are meant to stay in place, not to be seen as 'poof' and 'conquered'. Especially for mental illnesses like Bipolar Disorders.

And the last time I had psychiatric medication, I was held back in High School because I couldn't attend school. This time round, if Bipolar strike again or I choose to seek a real diagnosis... Oh no. My career is gone. I am fearful. And I cannot live anywhere close to my friends anymore, I'll lead a lonely life.

But I think about it:

Better to share my fears than to leave everyone in shock.

 

[Simply a Bibliophile]

I've never thought that people with a diagnosis could be accused of faking it! Although I suppose you don't have any "evidence". Still, why would someone who hasn't been diagnosed or at the very least isn't very sure claim that they have Asperger's or Bipolar Disorder? Perhaps that's just me being mind blind, but I can't understand it.

 

[Deno]

I've never thought that people with a diagnosis could be accused of faking it! Although I suppose you don't have any "evidence". Still, why would someone who hasn't been diagnosed or at the very least isn't very sure claim that they have Asperger's or Bipolar Disorder? Perhaps that's just me being mind blind, but I can't understand it.

I can understand it from not bring diagnosed (Although I may be slightly bias on this subject ;P). But when someone is not sure, I do not see how they could claim so, or why even. For me, after researching it for awhile, everything fit nicely in to place. So I'm sure I am an Aspie, or at the least am somewhat on the spectrum. As I have said before, 'Aspie' seems like home to me, so until I find evidence that makes me believe otherwise, I am an Aspie.

 

[Cerulean]

I wasn't sure what Aspergers was, from what I'd gathered online it seemed to be lonely isolationist geek syndrome, something that a cute girl with a job and a (albeit small) social life couldn't possibly have. I started working with autistic kids and realized that I understood and liked them better than the NT kids, and that other teachers didn't "get" them like I did. Then my husband took his first psychology class at his university and told me I was kind of autismy (yes that's his word for it, hah). I was pretty mad at first until I started looking into Aspergers and it blew my mind that all the stuff I've been hiding and struggling with, stuff that's lost me boyfriends and jobs in college, kept me from finding any appropriate friends, had a name. Since then I've been able to be myself for the first time, pretty much ever in my life, without fear of judgment or people calling me weird.

 

[smith2267]

I've never thought that people with a diagnosis could be accused of faking it! Although I suppose you don't have any "evidence". Still, why would someone who hasn't been diagnosed or at the very least isn't very sure claim that they have Asperger's or Bipolar Disorder? Perhaps that's just me being mind blind, but I can't understand it.

It says so in my medical record from WVU hospitals. But they don't give you an ID card to show people. And I suppose haters would just say I forged the ID card or hoodwinked the Dr.'s.

"Haters gonna hate," so the saying goes. I guess they think I am looking for sympathy or an excuse.

 

[fjord]

until I started looking into Aspergers and it blew my mind that all the stuff I've been hiding and struggling with, stuff that's lost me boyfriends and jobs in college, kept me from finding any appropriate friends, had a name. Since then I've been able to be myself for the first time, pretty much ever in my life, without fear of judgment or people calling me weird.

That pretty much sums it up for me. I don't think people not on the spectrum could feel so "at home" among aspie people. Except in the case where you feel a connection with someone who is also "different", but in some other way. But in that case, there wouldn't be that intellectual connection, which has been so relevatory to me.

 

[Loomis]

I came to my diagnosis from the other direction. I thought, yes I have some aspie characteristics but I don't have stims (I now recognize I do have stims) and I look people in the eye (after much practice). Sure I am introverted but I am diagnosed ADHD and my Meyers-Briggs is INTJ. Well, my soon to be ex-wife made an appointment at the autism society for me and I went to it. I really did not care one way or the other whether I was on the spectrum. I was surprised at the end when the psychologist said I was autistic. When she gave me a detailed explanation it made sense and I accepted it.

So I am autistic and I researched it and the more I read the more it made sense.

Last week I was at a dog show where my dog was competing. I started talking to a woman and was fairly comfortable with her. The reason I was comfortable is because I do not have a problem doing information exchange. She said to me you should go to the banquet tonight. I said I am autistic I do not do well in social situations. She said, very kindly, you are doing fine with me.

I actually went to the banquet just to see what would happen. I was fairly uncomfortable and mostly bored but I got through it. I managed because most of the conversation was about Airedales and I am interested in the topic. It was not too hard to ask questions and listen but I would not say I had a good time.

We are all very different. I really don't see the issue here. If you think you are aspie fine. The only reason I think a diagnosis is important is if you need it for disability; social services; or special education or workplace accommodations. Otherwise who cares what anyone thinks or says about your aspieness?

 

[s4ndm4n2006]

I have not "self-diagnosed" myself as an Aspie but I am pretty sure that I am. For me, being self-diagnosed, I'd have to have definitive answers and I'm not there yet, I'm still just thinking I'm highly likely to be an aspie, based on 2 of my kids having it and my having a good number of the traits described in my research of the disorder. Since people question even when you have an official diagnosis anyway I can understand them questioning if you have self-diagnosed, as unfair as that might be. With the advent of the internet and so much good information out there, though, it's true you can come away with a pretty sound self-diagnosis and it's reasonable to expect that people can figure this out on their own. I am getting an appointment as I type this, with a doctor that specializes in Aspergers.

 

[total-recoil]

I think you know when you have it. In my case it all just fell into place and only initially did I have a few doubts. Like the stuff about sensitivity to fabrics, noise and stims at first had me thinking maybe not. Then as I thought more I realised I am touchy about clothes (more so as a kid as I'd hate certain textures of trousers). The there was the annoyance I get at any noise when I'm in bed at night. Finally even the scrawly handwriting clicked. I recall once getting into trouble at work over my hand-writing.
However, the biggest symptom for me was alienation and also occasional face recognition issues and also the feeling ignored part.
The problem now is I figure even with official diagnosis, nothing is going to change. It may be even true to say that in this country aspies may even be worse off as the current Government is currently in the process of trying to force many physically and mentally disabled people back to work at all costs (or cut their social security). That means, people who are depressed, physically disadvantaged and so on. So the fact I can work but probably have to tailor my work to fit in with a condition is best handled by myself.
Also when I did initially see a doctor to discuss diagnosis, it was an awful experience. He didn't seem to have clue what aspergers is.

I can understand it from not bring diagnosed (Although I may be slightly bias on this subject ;P). But when someone is not sure, I do not see how they could claim so, or why even. For me, after researching it for awhile, everything fit nicely in to place. So I'm sure I am an Aspie, or at the least am somewhat on the spectrum. As I have said before, 'Aspie' seems like home to me, so until I find evidence that makes me believe otherwise, I am an Aspie.

 

[imagesbyholly]

I'm self diagnosed for several reasons- money, bad experience with a psychologist when I was 15...etc. I have a lot of weird physical symptoms that doctors havent been able to find a desease name for. The only things that keep people from labeling me a hypochondriac are the two grand mal seizures I had in conjunction with a sudden worsening of my health when I was 18. You can't fake those- they show up on a brain scan after the fact.

So, I keep quiet. My husband doesn't know. He's a good guy, he loves me dearly, but telling him would annoy him. I said to my mom, "I read about people with asperger's, the mild form of autism, and I have way too much in common with those people." And she just said, "yeah, you could have a mild form of it." End of story. She didn't try to disagree at all (part of me wishes she had, but really I'm grateful. One less person to feel at odds with). Never said anything to anyone else.

We live in a world where a lot of things annoy a lot of people. I want to be a good friend. It isn't necessary for me to tell everyone I have aspergers in order to be a good friend. It does get lonely sometimes though. I do wish I could talk to someone about it in person who is understanding and still looks at me like I'm a human (and not an alien) afterward.

 

[Soup]

Stigma? One of the best ways to avoid stigma is to eliminate as many toxic judgemental people from your life. Minimize your conversations & interactions with such people & keep it strictly to the matter at hand. Those who won't take your word for it wouldn't do so even if you were accompanied by Dr.Asperger & HE pointed to you & said, "Das ist ein ASPIE!" They don't want to believe you.

I wonder what kind of attention these troglodytes think an Aspie wants? For most of us, attention is like Malaria: we'd rather AVOID it. When it comes to 'being special', usually, that is a euphemism for DAMAGED & SLOW WITTED: keep those perks rolling! An official diagnosis that is on paper (in medical files or in gov't records) could impact on an Aspie's job prospects should it be discovered. It can also impact on stuff like getting a mortgage or other loan or even renting an apartment or office should it come up in a bkgd check. Rather than seeing our straightforwardness, logic & precision as positive traits, all they'll think is Asperger's=Autistic=unstable=dangerous='retarded'=NUTS!!! THat is just the attention I need: keep that spotlight shining! YAY! people think I'm crazy!

I realize that for younger Aspies still living at home with parents this can be more difficult. Even with a 'legit' diagnosis, many parents refuse to believe that there's anything different about their child. They just don't want to hear it. My mother, for ex., realizes that I'm 'not quite right' 'a strange bird' & 'not like normal people' (all HER words) BUT she stalwartly refuses to believe I'm on the spectrum. Even though, when it comes to the desire to socialize or have friends, I'm so far on the spectrum that Simon Baron-Cohen would have a hard time finding me! She thinks I'll 'grow out of it' (I'm 47.) & that if she just badgers me enough with unwanted dull & uninspired utterly vacuous chattering, I'll be forced to become more sociable & SHAZAAM!!! I'll no longer be an Aspie (and I'M the weird one?!?)

With many of us, our unique looks, gait & behaviour result in some kind of stigma. If we manage to slip under the radar (good at NT drag) our reactions & interaction style might cause us to be suspect. Rather than always living with the worry of being 'outed', I've chosen to no longer do NT drag except on those ultra rare occasions where it is essential to do so.

 

[Margaretha]

I never had any doubt that I am autistic. Even before I knew all the symptoms of autism I felt an affinity with autistic people. After researching autism because my grandson has asperger/autistic traits, I realized I fit all the criteria for HFA on the DSM V and I have asperger traits as well. The only place I talk about this is on autism forums, but I don't think anybody would not believe me. I don't have an official dx, but I'm in my 60's and I've managed to survive so far. I don't feel disabled. I think if people were more accepting of people with neurological differences, my life would have been more normal, and that goes for other people on the spectrum as well,

 

[Tarragon]

I'm new to all this, and this post is really helping me. Im not self-diagnosed. It was my girlfriend who did it! She pointed this out, and since then, all the research online has so utterly pointed me towards this I'm left with no doubt. The ONLY other explanation for my behaviour if I am not am Aspie is that I just happen to have identical traits to those people that are!!

But am official diagnosis would really help me, as I've been looking for an answer for a long time. I'd personally like to be able to "join the dots" and move forwards. I have no worries about it being on my medical record, or even affecting other peoples views of me. all that matters to me at this stage of my life is that I make sense of who I am, and why I've never fitted in to anywhere before.

I'm lucky enough to be receiving mental health treatment at the moment so I am hoping I can get some answers from there.

 

[total-recoil]

It's a matter of reading up all the symptoms and then adding it all up. In my case, it just clicked. I think the very last confirmation was the hand flapping. I had no idea at all I ever did that but basically I was chatting to someone and drinking a beer. I'd already decided I had aspergers but figured I didn't have the stims. Anyway I happened to look down and noticed my right arm was flapping as I was talking. I think I only have that stim very slight and I must have been more switched off due to the beer and slipped into it. It was just like a communicative movement of the arm.
Hand writing was another small give-a-way as I scrawl really bad. Even more surprising was the face recognition I always assumed nobody else ever had issues with.

I'm new to all this, and this post is really helping me. Im not self-diagnosed. It was my girlfriend who did it! She pointed this out, and since then, all the research online has so utterly pointed me towards this I'm left with no doubt. The ONLY other explanation for my behaviour if I am not am Aspie is that I just happen to have identical traits to those people that are!!

But am official diagnosis would really help me, as I've been looking for an answer for a long time. I'd personally like to be able to "join the dots" and move forwards. I have no worries about it being on my medical record, or even affecting other peoples views of me. all that matters to me at this stage of my life is that I make sense of who I am, and why I've never fitted in to anywhere before.

I'm lucky enough to be receiving mental health treatment at the moment so I am hoping I can get some answers from there.