The Stigma of Self-Diagnosis

[sybok]

In the past week I saw people referring to
the line "stranger in a strange land" and their
frame of reference went as far back as a
Leon Russell song.

No mention of the Heinlein book.
No ideas relating the older book that the
title was from, either.

Ha. It's been too many years since I have read any Heinlein. I remember how I loved the stories I read. I have been trying to revisit Arthur C Clarke and currently reading "The Songs of Distant Earth". I do love it. I also love the Mike Oldfield album inspired by the novel and approved by Clarke himself.

Now I am inspired to rediscover Heinlein, commencing with Stranger in a Stranger Land. Can you actually grok that?

 

[Servelan]

Ha. It's been too many years since I have read any Heinlein. I remember how I loved the stories I read. I have been trying to revisit Arthur C Clarke and currently reading "The Songs of Distant Earth". I do love it. I also love the Mike Oldfield album inspired by the novel and approved by Clarke himself.

Now I am inspired to rediscover Heinlein, commencing with Stranger in a Stranger Land. Can you actually grok that?

Yes, I grok that. Have you read the Foundation series? The Mule resides in the White House...

 

[Brook]

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'm not even officially diagnosed yet, but self diagnosed instead and what you said above is the reason that I am not really TELLING anyone yet. Because I have another learning disability I've known about for years, and already have had a few people in my life over the years tell me that it's just an excuse. To which I want to yell at them "You don't f*****g know what it's like to live with it so don't tell me it's an excuse!" But of course that would solve nothing and make things worse, plus it's not "couture", so I haven't said it.

anyway, to get to the point, YES I agree with you that people do say that kind of thing to people with invisible disabilities, not just Asperger's but also social anxiety disorder (which I also recently discovered I have), ADHD, learning disabilities, and so on. So as sad as it is to admit, people are like that yes, and I can completely understand your wanting to avoid it. Add to that the sensitivity to criticism and other such things that Aspies and soc. anx. disorder people have, and that makes it even worse and makes us want to avoid telling people even more!

Definitely a tough situation I do not have any answers or a suggestion for.

 

[Brook]

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.

I would still recommend anyone that does not have an official diagnosis to get one, even if it means working for a year and saving all your paychecks. Why do I say this? because then you have an OFFICIAL verification of your disability, that, should you ever need to, you can show to employers or anyone else that doesn't seem to believe you.

Even if people still give you a hard time and squawk at you about it, hopefully the official diagnosis would eventually get them to back off.

 

[pjcnet]

I have an official diagnosis and even though I don't have anyone tell me directly that I'm not autistic I'm fed up to the back teeth of NTs telling me that I do things that are related to my autistic traits on purpose or that it's my fault.

For instance I find it extremely difficult to control the volume of my voice and I'm always being told I'm shouting when to myself I sound like I'm talking at a normal volume, if I really force myself to talk quietly it's like no-one can hear me and there's a huge urge to increase my volume again which I struggle greatly to control and I can't keep it up for long, but I've been told on multiple occasions that I raise my voice on purpose just to annoy. I am really fed up of NTs having a go at me for it including a "friend", I've tried so hard to explain to him what it's like and I've spoken asking him whether I am shouting or not, then when he says I am I explain that to myself it sounds like normal volume, but he just doesn't seem to believe me or he doesn't want to and despite trying hard it's impossible for me to constantly fight to keep my voice down as I have to be permanently and consciously analysing how much I breath out as I talk, then I can't concentrate on what I'm saying. Even when out I've been suddenly shocked to have security called because I was apparently shouting at a receptionist when I thought I was just talking normally and I've had to have other people explain to their management afterwards that it's part of my autism since they simply wouldn't listen to me and when I get annoyed in these situations it makes it even more difficult for me to control my voice level and it can even put me on the edge of a meltdown (I then have to quickly leave to quiet to avoid it, something I've learnt to do in later life). Yes, I've had apologises in situations like this afterwards, but it's got me into a few difficult situations where people have mistaken my shouting for being aggressive when I'm not being aggressive in the slightest. Again I've had call centres hang up on the phone to me for exactly the same reason, I really struggle to use the phone anyway, it causes me a lot of anxiety and this just reduces my confidence even more.

Another problem I have is not always being able to interpret other people's speech due to slow processing issues, especially if there's background noise and I'm therefore often asking for things to be repeated, yet I'm often told that I'm not listening, or even that I have heard and I'm just being awkward on purpose. Sometimes I also don't hear when another person starts talking to me as I'm in my own world, processing and repeating things in my head, this makes it worse. It's infuriating and no there's nothing wrong with my actual hearing, it is part of autism and I'm sick and tired of telling NTs.

These are just a few examples and people wonder why I interact with people in real life as little as possible. I can imagine things could be even worse for some autistic people who haven't actually been officially diagnosed, so if possible I would recommend it.

 

[Jena]

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 am not a self-diagnosed aspie, I am a clincially diagnosed aspie, and even I get some of that stigma thrown at me. My parents tell me all the time I am just looking for attention and that I am making excuses all the time. So not sure if anyone else said it but totally not just a self diagnosed thing. Like I legit been through tests for a year, until my doctor told my parents that it was Aspergers and I still get ppl thinking I am making up excuses which really sucks. Because then I don't have the support I need through those hard times and end up crying alone in my room.. because I am certantly not making up this stuff. Regardless of if your self diagnosed or clinicly diagnosed, there will be those stigmas against it cause they don't realize how awesome we are lmao. Which honestly sucks cause they really don't understand the struggles we go through t-t

 

[Mary Anne]

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.

There are millions of people with diagnosed bipolar that work every day and stay successful. They take medication to stay "even" and do not wait for a major bipolar event to destroy their routines and daily lives. Also, there are many support groups for people with bipolar (at least in the USA where I work in the mental health field). I hope you can find a way to feel supported and less fearful.

 

[MeghanWithAnH]

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 knew I was on the spectrum for years before I was officially diagnosed, and I was afraid of this same thing. I only told a few people. I told my mom, who was very skeptical until last year when she started learning more as I started really looking into getting diagnosed and she realized how much of it fit me (and many of our other family members). I told some people in a church group once. I didn't specify whether I was officially diagnosed and they didn't ask. I also told a coworker who did ask. She was accepting, but I was embarrassed to say I hadn't been diagnosed. Now that I have my official diagnosis I feel much more confident sharing it. I've told my whole grad school class because we are currently taking a class on ASD and I sometimes contribute my own experiences to the discussion. Now I feel like telling everyone and have to remind myself that sometimes it's better not to tell people. Having an official diagnosis shouldn't make such a difference, but it does.

 

[meepmeep]

I am kinda scared of getting officially diagnosed, quite honestly. Then it’s a “preexisting condition” and my health insurance rate goes sky-high the moment the rules change to allow the insurance companies to do that. And for what? If I were suffering, or non-functional, sure. But I don’t need help at this point. So I’d be doing this for ... Internet points? No thank you.

Also, as a parent, I worry that a diagnosis would affect my ability to raise my child if there ever were a divorce and a custody battle. Things like this are used against parents in custody situations all the time.

I’m reasonably certain of my self-diagnosis, as is my mother. I don’t think it’s anyone else’s business, really. I haven’t told anyone else (even my spouse) and don’t intend to.

 

[RosaViolet]

I am kinda scared of getting officially diagnosed, quite honestly. ..Also, as a parent, I worry that a diagnosis would affect my ability to raise my child if there ever were a divorce and a custody battle. Things like this are used against parents in custody situations all the time.

Could you explain a bit about ASC being used against parents in divorce and custody?
Could you please share your sources of info on this?

 

[Anarkitty]

Could you explain a bit about ASC being used against parents in divorce and custody?
Could you please share your sources of info on this?

Not the OP, but really, ANYTHING can be used in a custody battle. Unless one of the parents is actually breaking laws--drug use, abuse, etc.--then everything is pretty subjective when it comes to which parent should get the kids. It could easily be used against a parent if the judge felt that ASD is a mental illness which made the autistic parent potentially dangerous. My understanding is that it would be all about what the judge thought about that condition.

As for the original topic, I'm very frustrated by this myself right now. My family has spent decades telling me that I'm odd, that I talk too loudly, that I go on and on about things, that I'm ditzy, etc., etc., etc. But as soon as I said that I think I'm autistic, I got a disbelieving, "Hmm..." from each of them. And it's frustrating. They don't get to ridicule me and then claim that there's nothing actually wrong with me.

 

[Aspychata]

l am struggling if l should tell my mom. But l understand myself so much better now. l felt like a random puzzle with missing pieces, but now knowing this insight of Aspergers, l understand the strange relationship with numbers l have, why l have hard time with social cues on the phone with a neat person that l know. Why l love to write and do other socially isolating things, like intricate pencil drawings, hours looking at computer data files, read random computer code and be totally entertained, the qirks are too quirky l am afraid. My mother even said she was surprised l got married. l think my ex falls somewhere on the spectrum, my daughter definitely does. l like certain repetitive things. But l am lucky because l have held many different types of jobs. But l am the person that will show you things about your office software you didn't know, happened to me at eye doctor's office l worked at. So l don't care what people think, because they probably have their own strange quirks, and can be found in the DSM of quackpot pathology.

 

[simetra]

Since there are huge problems with being taken seriously by other people (even though those types are likely to not believe a diagnosis by an expert either) and the fact that no support is available for me as long as I am undiagnosed, I would instantly go get evaluated if it didn't cost as much. Insurance where I live does not cover anything mental health related.

Consequently, I was thrilled when I read that in my city a new autism centre will open soon, the first one in my country to offer therapy / councelling that is covered by insurance(!).
Then I found out the centre only accepts people under the age of 15.

While I am happy for the kids and their parents who need the support and can't afford it, there is still a long way to go to help older people with ASD and especially those that do not receive a diagnosis until adulthood. But due to the recent positive developments I shall stay hopeful.

Until then, I will try to go undiagnosed and cope with my newly acquired knowledge ever since I started researching ASD. I hope getting a diagnosis will be a little more affordable, not necessarily because of ignorant people, but because of the support I could receive.

 

[Trophonius]

I'm not sure if there is a stigma of self-diagnoses — the stigma, if any, it's about being autistic at all.

But people are right I believe, in not taking the word of a self-diagnosed person. It is only rational that people will trust only the word of a professional in the area, instead of a person with internet-knowledge of autism. Now, if the person believes there is anything wrong with him, it is likely true, but self-diagnosing as autistic to explain the symptoms is not a good idea — psychological/psychiatric disorders often overlap, are influenced by social contexts, change overtime, and it requires a good deal of experience to find the precise cause of some behaviors. In extreme cases, a person might be considered to be autistic by a non-professional, and this might very well be true, however most adults that seek a diagnosis or consider themselves to be on the spectrum have a mild form of autism, which is harder to identify and many traits can possibly be acquired through life (dysfunctional family, bullying, narcissist parents, etc).

 

[aspie1w]

yeah i found those or a friend saying that no, you do not have that, now that i told him again asked me back, do you have it? just is a bit weird well is frustrating

 

[Matthew Behnke]

I don’t get why people do this, I have had autism since childhood and knew I had it since my living memory, if you feel you have autism and you aren’t around crowds a lot, and you can not live normally like everyone else, you should be considered autistic, some people don’t want to acknowledge this because they think autism only occurs in childhood and not seen in adults, or they are saying that to discourage people because they diagnosed at a later age.

 

[aspie1w]

Or because do not meet the cartoon like. Impersonalization of TV and media does for autism and other mental illness

 

[Dirtdigger]

I don’t get why people do this, I have had autism since childhood and knew I had it since my living memory, if you feel you have autism and you aren’t around crowds a lot, and you can not live normally like everyone else, you should be considered autistic, some people don’t want to acknowledge this because they think autism only occurs in childhood and not seen in adults, or they are saying that to discourage people because they diagnosed at a later age.

I have always said that Autistic Children grow into Autistic adults and normal people need to understand this. I was born Autistic and I will die Autistic.

 

[zozie]

I agree with the idea that if you identify with autistic traits, you can self-identify and be confident in your self-assessment. The drawbacks of living with autism are enough to counter any apparent benefits of unofficially putting your reality into a better-fitting context.

I'll pursue a formal diagnosis to assist my vocational rehabilitation and approaches to training and employment. And sure, part of me feels "more legitimate" with a formal assessment. That said, if I am evaluated and found to be something else, I will reject the results of that assessment. Regroup and weigh the benefits and drawbacks of getting a second opinion.

At the end of the day, I know what I know, and what I know is that I am autistic. Clicked right away. I believe very strongly, however, that I was raised by undiagnosed neurodiverse parents who did not pick up on any apparent abnormalities, so while that has given me some measure of self-acceptance, it also leaves me ill-prepared to navigate a neurotypical world.

My 16-year-old is also being assessed. It's pretty obvious to them, too.

Bottom line: you know what you know.

 

[Magna]

Here's how I feel about self-diagnosis:

Every adult who wan't diagnosed with autism as a child or wasn't told by another person that they should look into whether or not they have autism but never thought of the notion themselves, self-diagnoses.

That's how it was for me. I self-diagnosed prior to being professionally diagnosed.

I fully support autism self-diagnosis. I fully support anyone who self-diagnoses and is fine with never pursuing a formal diagnosis. With one important caveat: I believe that a person who self-diagnoses should indicate to others that they're self-diagnosed

This can be done in ways that are not overtly/blatantly differentiating such as:

"I believe I'm autistic."
"I think I'm autistic."
"I've done a lot of research on the subject and I'm convinced I'm autistic."

I do not believe a person who is self-diagnosed should say that they ARE autistic.

I do know from experience that there are people that disagree with me on this. I also understand that autism assessment results and diagnosis can be incorrect. However I still believe it's important to have a distinction in identification.