The Stigma of Self-Diagnosis

[MoCoffee]

I have an official diagnosis, but I think anyone who comes here, reads the posts, and can say "my life struggles make so much sense now" is very likely an Aspie and I accept them as such. It isn't uncommon for people to doubt your diagnosis whether it's official or not, since many people really don't know much about Autism (including me before my diagnosis) and those of us at the high end can become pretty good at hiding our symptoms. This is especially true for women. I think there needs to be a lot more education, especially for Doctors and teachers so that diagnosis can be made much earlier and appropriate adjustments are made to help us.

 

[Autism]

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.

I think that a lot of people automatically react negatively to a person that is different in any way. It is almost as if it makes other people unsure when they learn that a person thinks differently then them. Once they react like that then they go into attack mode and I have never figured out why. Then they attack the person that is different, similar to white tigers that could not survive in nature.

 

[@iam_cloud]

I can see both sides of the argument for this one. For a lot of NATs (my term for neuro atypicals) they know something's different and just don't have a name for it. Which is true in my own case. But with some cases, people do just want attention. I did a lot of research for myself before I allowed myself to use the term aspie. But, boy does it explain a lot! I used to get "Oh that's just Cloud. She's just eccentric." Or, my personal favorite: "She's just a little weird."

 

[Kari Suttle]

I think there is a huge stigma if you are diagnosed or not. Even if you are diagnosed you would probably still face a lot of that same stigma - 'you are just attention seeking', 'you don't really have it', etc. but being undiagnosed like I am you just face the added stigma of doubt as well. For me, I even doubt my own undiagnosis at times cause I grew up being told I just wasn't paying enough attention or I wasn't trying hard enough or I just needed to get out there stop being afraid and make friends. Like it was all my fault. Even now with my family supporting the unofficial diagnosis i still deal with it. Getting diagnosed isn't likely either, it's expensive and I'm in college and as an adult there is little in the way of services that getting a diagnosis would offer me.

 

[gouldgrl]

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.

Don't be so sure. I thought my own diagnosis would "just be a formality" and have been unpleasantly surprised by how thick-headed a lot of psychiatric professionals are. I think a common mentality among them is that too many people are simply "identifying" with Asperger's--and now they are committed to putting a stop to it.

 

[gouldgrl]

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.

I don't know that I would call it a stigma, per se. It's more just pure and simple skepticism, which is why so many other posters have testified that a professional diagnosis is no guarantee that your friends and family will suddenly regard you as truly on the Autism Spectrum. In my experience, when I bring up my placement on the Spectrum, people won't make any inquiries about it (how does it affect me? how long have I known? etc); quite contrary to how they would respond if I had been diagnosed with a physical impairment. It seems to me that a professional diagnosis is of no value to anyone but the person on the Spectrum.

 

[gouldgrl]

I don't know that I would call it a stigma, per se. It's more just pure and simple skepticism, which is why so many other posters have testified that a professional diagnosis is no guarantee that your friends and family will suddenly regard you as truly on the Autism Spectrum. In my experience, when I bring up my placement on the Spectrum, people won't make any inquiries about it (how does it affect me? how long have I known? etc); quite contrary to how they would respond if I had been diagnosed with a physical impairment. It seems to me that a professional diagnosis is of no value to anyone but the person on the Spectrum.

All this to say that I'm grateful for this forum!

 

[King_Oni]

Don't be so sure. I thought my own diagnosis would "just be a formality" and have been unpleasantly surprised by how thick-headed a lot of psychiatric professionals are. I think a common mentality among them is that too many people are simply "identifying" with Asperger's--and now they are committed to putting a stop to it.

While it might appear to be a trendy thing to be an aspie (and I guess in a similar vain how everyone has ADHD nowadays) I think there's a certain responsibility of a professional to accurately assess your situation, put it in and out of the vacuum of society and see how you hold up. If you're unable to function with accommodation it's quite clear "something" if off. Whether that's autism or something else should be to be determined by such a professional.

What I however found is that a fair few of these mental health professionals live in some kind of bubble and don't understand how little support and accommodation there is for someone with some impairments to function to a reasonable level. And that in the end might throw them off; they just fail to see the problem. Most likely because they're in their office and in their books too much.

 

[Judge]

The idea of anyone pretending to have autism or construe it as "trendy" makes me ill. This is no picnic. Not for the long haul.

When programming like "The Big Bang Theory" is long gone, there will still be autistic people having to struggle every day in a Neurotypical world.

In my immediate environment, I just don't see any "upside" in disclosing my suspected neurological condition. For the most part autism is not only stigmatized and stereotyped, but it's generally misunderstood by virtually everyone around me. Trendy? WTF?

With all this to be considered, it's difficult for me to be honestly concerned over professionally diagnosed versus self-diagnosed people. For the most part, I'm inclined to believe that we all face similar social obstacles in life.

 

[MyGreyMatter]

I really only encounter this mentality on the internet. I generally try to convey "Point and Laugh" at these *idiots*.

 

[arthousesalem]

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

NT's are very quick to judge, label and ridicule because at first glance our Aspergers isn't that obvious until they start interacting closely with us.

 

[arthousesalem]

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.

High five
I'm 41 and I have the same issue with my family.

 

[Madame Catfish]

As a person officially diagnosed, I bear no grudge against the self diagnosed, but still believe it is crucial to get a professional or, at least third person view on the subject before proclaiming autism. There are hypochondriacs, and there are some people who unintentionally begin to see symptoms in themselves when they are not truly present. While I'm definitely not denying anything in your particular case, people should be very careful before coming to a self-diagnosis. It's a shame professional diagnosis is not readily available, though.

 

[FlitterFlutter]

I am officially diagnosed, but I never shared that fact with my mother because I am fairly certain she would have regarded it as simply that I was trying to get attention.

 

[MissLexiLoo]

My husband literally ignores me when I bring it up. Like I didn't even say it. He did tell me one time that I don't have it even though I allegedly "want to". My son has a diagnosis and he's basically my clone, but for some reason my husband is resistant to the idea.

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.

My

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.

 

[Juturna]

Well I didn't self-diagnosis aspergers, I did have to self-diagnosis my main problem. It's sad because when I was a teenager and I was really depressed I'd tell people that I knew how I was feeling and what not about the thing that it wasn't normal - but oh nobody believed me. So while I don't have exact experience with the stigma, I can only faintly relate.

Also since I did find out about the thing I mentioned about my self diagnosis I can definitely believe not everybody will have access to somebody who can diagnosis things well -or believe you, etc for that matter. So as long as YOU are comfortable with it, or relate (or whatever I'm really trying to say here), it's all good, I think.

 

[Katherine Rawstron]

The doctor didn't believe me when I said I think I'm autistic (further reading on up-to-date books on the subject confirm that I am), but my husband does. When he said to me, "You are strange", what he was actually saying, was, "You know, you could be right. I still love you, but it does explain a lot of things". I did say it out loud to 3 other people in my church last week, and mentioned it on Yahoo Answers and in a private message to somebody on F/B who might also have it, but otherwise, have kept it to myself as there hasn't been a natural opportunity to bring the subject up. Without an official diagnosis, I don't feel justified in making a big announcement and it would feel forced; so I'll just play it by ear and let it come out naturally whenever it's relevant or feels right.

 

[Kit]

Those people could be speaking from personal experience. Maybe they know people who are self diagnosed and don't actually have it or they have seen it online.

I knew someone online who got obsessed with Asperger's and he got worse and worse and then started using it as an excuse. It went from "I am scared I have it, I don't want to be aspie" to "I am aspie, they're wrong, I do have it." His behavior did get worse too and my feelings no longer mattered and he would go "I have AS" when I would complain about his behavior to me. So I think this person just wanted to have it and even trying to get a diagnoses and coming back as NVLD didn't satisfy him. Then he wrote in one of his posts online that he was seeing some counselor and she decided to write his diagnoses like it was some sort of prescription. It looked to me he kept going doctor to doctor until he got what he wanted. Congratulations, not.


I have more respect for those who do research and suspect they may have it but are not sure. I have respect for those who are not sure if they have it or not due to overlaps or because of their history. I have respect for those who do want to go in for an assessment to see if they have it or not and to explain things for themselves.

Despite my official diagnoses, I have been accused of faking it before. I am sure every autistic person has gotten it at some point in their life. I have even seen people online say Temple Grandin isn't autistic. That is because people are thinking of the stereotypes.

 

[Katherine Rawstron]

Yes; although I wish I'd known I have the condition before making wrong life decisions, I'm glad I didn't know about it when I was much younger as I, too, may have been accused of faking it to get out of trouble or cut an interminable lecture short, whether I actually was faking it or not - at least I wasn't tempted to actually fake a condition I didn't know I had!

 

[Kit]

I think my mother has accused me of faking it because she has told me I was trying to be Asperger's. It never made sense when she would say "Don't try to be Asperger's, be Beth" and I would wonder what is that supposed to mean, isn't that like saying don't try to be OCD or anxiety when in fact those are also part of who I am?

I have used it as an excuse before when I was in high school but only because I found out I had a disability so I thought everything should go my way and be catered to me and not all rules should apply to me because that is what I had noticed about kids with disabilities.

Who knows why my mother thought I was trying to be AS so I figured she meant using it as an excuse. But then she told me my school counselor was teaching me to be AS so I told her he was not telling me how to act because of AS and saying this is how an aspie acts and telling me to act that way. She told me she knows he was not doing that but he was telling me instead "That is because you have Asperger's" and "Of course you didn't know that, you have Asperger's" and "Of course you had a hard time figuring it out, you have Asperger's" and telling me anything was because of Asperger's. Okay I don't understand how this was teaching me but my husband told me when I told him about this that he could understand what she was saying. he told me I was supposed to be getting better, not worse and he was giving me excuses. So instead of teaching me how to handle things and deal with things in life, he was telling me it was because of Asperger's. So basically he was teaching me to use it as an excuse. Maybe this is what my mother meant by trying to be Asperger's. But I never asked because I am afraid she will say I was faking it and exaggerating when in fact I was having more anxiety and the fact I had quit trying to be normal and just accept myself. Around a kid I knew who had AS, I was being myself more around him.

But to anyone without it, they might think we are trying to be AS or just faking it if our behavior is inconsistent and if we get worse due to stress or anxiety or because we quit trying to be "normal."

To this day I still worry sometimes my mom is thinking I am trying to be AS and I worry she will accuse me of it if I tell her about any of my problems. I also don't tell people about my diagnoses because I am afraid they will use it against me and accuse me of using it as an excuse or faking it.