The Stigma of Self-Diagnosis

[Ambi]

Yes, this is why I don't tell people I have Aspergers. I just don't want to deal with their doubting accusations, I already hate being misunderstood.

 

[HisShadowX]

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 have stopped going to autism related groups and barely post on autism related sites due to these sites being over run by people who

• We don't know are autistic
• Attack other people who are actually autistic
• Attack and discourage those seeking a professional diagnosis instead demand they worship at the altar of an online quiz

I live in Chicago here in the United States. One of the reasons I stopped going to in person autism groups is we had a couple of guys come in and hyjacked the groups and demanded the groups give them tons of attention.

Usually the disturptors are self diagnosers. One guy we found out from a cousin who actually has Autism that our main disruptor which was his cousin was committed to a mental institution.

It seems he self diagnosised for years and didn't want to see a professional after being forced to see a professional after an outburst months prior he found out he had a manic mental disability that required medication.

He instead chose to not heed this advice and was encouraged not to listen to what the doctors said by online enablers from from people who typically come from Socialist countries where it can take years to get a professional diagnosis or tons of money. He also was encouraged in person by other self diagnosisers in person.

Ends up he had another manic outburst because he listened to everyone else but the professionals and physically assaulted someone in an manic outburst which he was arrested and then committed.

Now his family tried to limit his internet access because of online enablers of self diangosising and his family is thinking about putting him in a home because he sometimes refuses his medication because an online quiz told him he is autistic.

Sadly because many of us are push overs in person and online groups dedicated to actual autistic people eventually get invaded by self diagnosisers demanding to be accepted and anyone who does not agree must be punished.

Reddit autistic groups will quickly ban you if you dare question the online quiz.

As for Canadians and Europeans I feel bad for them and I've come to understand why they encourage people to self diagnosis. It's not because most of the time they refuse to see the truth it's they come from countries with free healthcare and it can take years to get any sort of answers or tons of money to figure out what's wrong and some fear the answers they might get.

Often when I see a thread from someone in the United States asking for advice and those professing self diagnosis are often when you click on their name you find out they are from Europe or Canada.

What those from Socialist countries with free healthcare might not understand because of what their State Run media tell them about the United States CBC, BBC is that getting an appointment to get seen and diagnosised can cost only a 30 dollar co Pay and a two week process. I had bad insurance when I was diagnosised and it only took me a week to get my appointment I could of had it within the week but chose to have it on a later day and after they did testing that included multiple appointments I know what was what fairly shortly.

My best recommendations for Europeans or Canadians don't respond to people asking for advice on how to get diagnosised when you have no idea the process in this country.

Also Barrack Obama had made it a crime not buy insurance in the United States and if you don't have any money public aid has tons of options as well.

One girl who as a blog that she uses her self diagnosised autism diagnosis to heart. When she finally got treated and it was found she wasn't autistic at all but had something similar but she still carries the autism flag and claims she's autistic even though she has accepted her actual diagnosis

Overall dealing with self diagnosisers to me as caused me to distance myself from the autism community. Some from across the pond though they have 'free' healthcare it take way to long so I can understand their reluctance but you really can't say your autistic because a quiz told you so.

For those here in the states who have access to healthcare and refuse to a referral to be seen some of these guys have real mental health issues that are being ignored because we have a community encouraging their mental illness whatever it might be.

 

[Keigan]

No stigma here, my DNA proves it - I'm autistic, get use to it because I really don't care what others think or feel.

 

[Eromevol]

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.

Hand writing ...mine is scrawly too
I think its actually getting worse since I painstakingly stopped trying to get it down solidly.

 

[dhl02]

The worst thing is that even when you're diagnosed, people still accuse you of using it as a "crutch." It is so frustrating. Like "OK you have aspergers. You're really really smart so you can still do most NT things" People don't realize how hard it is to learn from interviewing to get a job when you can't read people.

 

[Alaska]

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.

Sometimes people who are NTs or who may have other problems say things to mess with another person's mind. An ex-friend made disparaging remarks when I made the mistake of confiding to her that I thought thought I have Aspergers.

I realized when I played back that conversation in my head, that she made her disparaging remarks that she did not say them because she meant them. She was only trying to use words to try to hurt me. It would have been helpful to have paid more attention to her bad intentions and saved myself more pain later.

 

[Alaska]

Just wanted to point something out.. This MAY BE a factor in the carpal tunnel, and if your in to trying new things to help it, try using reverse osmosis water for awhile, and water bottles without fluoride. See if it makes any difference after a week or two of this, if not you can choose to try for longer or revert back to your old ways. Take a look at the places you have lived and check if they were fluoridated, and if you drank lots of water. If there was never fluoridation where you are then you can ignore this. Goodluck!

No need for hate replies labelling this as rubbish or calling me a conspiracy theorist. This is something I believe may help, and it is my right to give this information out.

There is a chiropracter who found away to cure carpal tunnel. He breaks loose the adhesions that cause it. He found this years ago and was teaching other chiropracters to also cure it. I have not heard anything about him for years.

I told another chiropracter about his carpal tunnel cure. The other chiropracter had not heard of the cure and the discoverer, but just knowing about it was enough for him to replicate it. Perhaps other people could go to a good chiropracter and ask them to do the same for their carpal tunnel problems.

 

[WildCat]

I don't need an online quiz to tell me what I am, don't really like them to begin with as a certain minority, if negligible, love to play armchair professionals when they're nothing close to qualified. Professional diagnosis (read: by a QUALIFIED doctor, not by online whatever) is the best way to go in my opinion. I'm aware that some people can't afford it, the process is lengthy and complicated, and that even experts sometimes fail to get it right, but if you want to end all trace of a doubt then it should be a priority.

I've stated my thoughts about it on another thread similar to this one - if you're faking it, you're ruining it for those of us actually diagnosed and struggling. Don't like the fact you're not getting excess attention on top of that? Good, if you were actually diagnosed to begin with, you probably wouldn't be exhibiting such behavior in the first place. I could be wrong about that though.

I'm Jonathan first and foremost, my high-functioning autism isn't central to my being and most of the time not even relevant. Always has, always will be. Whether people want to doubt it, point it out, use it as ammunition, well, I could give a baboon's ass anymore. Go right on ahead.

 

[Fluffy]

I am self diagnosed only at this stage due to the fact there are not many qualified ASD practices in my state (even less options for adults) so there is a bit of a wait and also, as others have mentioned, due to the cost. Single Diagnostic Assessment + Report (2.5 - 3 hours) = $700. I am currently unable to work due to my mental health but apparently anxiety, depression, OCD and possibly BPD/bipolar is not enough of a cocktail for me to be considered "disabled" and get the subsequent government funding so I have to save up on the very small amount of money I get. My opinion is that an ASD diagnosis explains a lot of the traits expressed by me that have been given the wrong labels. As well as the sensitivity to medication that has baffled my current psychologist. I dare not mention my suspicions to her as I do not feel they would be taken seriously, so for the time being I have to wait and be patient and kind to myself until I can find out one way or another. YES, I have taken the online tests (multiple times just in case I was doing it wrong and also because I didn't believe them at first) but only after I read about symptoms in females and had an epiphany and flashbacks to life experiences. To be honest, for the first time ever, things made sense once I discovered high functioning Autism. I agree with those who talk about armchair professionals and NT's being horrible online. Why they have to do that is beyond me.

 

[Servelan]

Has anyone else observed a stigma associated with being a self-diagnosed Aspie?

Nope. I tell people I've checked stuff out. I know I have it. I'm one of the hard-to-diagnose (I was in my late 50's when I self-diagnosed).

 

[louloulovesdogs]

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 am like this too. I can make "small talk" if it's about something I have information. So I often respond to small talk with a fact. Someone asked me what kind of tea I was having, I said english breakfast, and he said oh that black tea, you want caffeine, and I said yeah and spouted off a fact that black tea has more caffeine than coffee but coffee has other stimulants and that's why you can't just make the switch. Unnecessary info but the only way I can keep small conversation.

 

[Servelan]

I am like this too. I can make "small talk" if it's about something I have information. So I often respond to small talk with a fact. Someone asked me what kind of tea I was having, I said english breakfast, and he said oh that black tea, you want caffeine, and I said yeah and spouted off a fact that black tea has more caffeine than coffee but coffee has other stimulants and that's why you can't just make the switch. Unnecessary info but the only way I can keep small conversation.

It's easier for me to do one-on-one or be in a small group with people I know because there's less to decipher on the social side of things. Too many people = too many social signals to sort. Small talk like tea vs. coffee - well, a lot of the data I collect is rather ephemeral in nature, so I'd toss in afternoon tea has no direct equivalent in the 'coffee' world, but we associate coffee and books not tea and books, an interesting contrast in how we view the beverages. : )

 

[sybok]

I should have read your question before starting a new thread. You are pretty much discussing my question and it seems to be disappointingly common. I was messaging my twenty year old daughter today, who is currently in her second year of Clinical Psychology. I told her I was more convinced than ever that I was on the spectrum. She replied with "Is being more convinced of having Asperger's more relieving?" Which I was a little incensed about and felt somewhat like she was condescending, rightly or wrongly.

I told her "An Asperger's diagnosis would be trans-formative for me. I don't think people realise how much life feels like a foreign land for me. So it's not a relief so much as an opportunity to find a way of translating the world more efficiently and meaningfully and cutting myself some major slack."

I don't know how to communicate what it is like to be 51 years old and to struggle so badly to live in the world that every day I wished I was dead or not here. Not suicidal as such, just fed up with not knowing how to be part of it all. Everything takes so much effort.

 

[sybok]

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

 

[Servelan]

I told her "An Asperger's diagnosis would be trans-formative for me. I don't think people realise how much life feels like a foreign land for me. So it's not a relief so much as an opportunity to find a way of translating the world more efficiently and meaningfully and cutting myself some major slack."

I don't know how to communicate what it is like to be 51 years old and to struggle so badly to live in the world that every day I wished I was dead or not here. Not suicidal as such, just fed up with not knowing how to be part of it all. Everything takes so much effort.

I could have said exactly the same thing you did and I was older than you when I self-diagnosed. I've felt the same all my life, like a stranger in a strange land (sorry, Heinlein!) and finding out was the closest thing to enlightenment I think a person can feel. If you've taken the aspie test, read up on AS and believe that the diagnosis fits, one thing you'll find is that letting go of beating yourself up is a tremendous relief. There have been a lot of 'well, that explains that' moments, which I'm still having. Life is still a struggle, but things are getting better, slowly.

 

[sybok]

I could have said exactly the same thing you did and I was older than you when I self-diagnosed. I've felt the same all my life, like a stranger in a strange land (sorry, Heinlein!) and finding out was the closest thing to enlightenment I think a person can feel. If you've taken the aspie test, read up on AS and believe that the diagnosis fits, one thing you'll find is that letting go of beating yourself up is a tremendous relief. There have been a lot of 'well, that explains that' moments, which I'm still having. Life is still a struggle, but things are getting better, slowly.

No one I have ever known has read Robert Heinlein. Nice reference.

 

[Servelan]

No one I have ever known has read Robert Heinlein. Nice reference.

Thanks. 'Grok' is a part of my vocabulary, although I have to translate it for folks who aren't familiar with the book.

 

[tree]

No one I have ever known has read Robert Heinlein. Nice reference.

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.

 

[isthisreallife]

True story, it doesn't stop even after an official diagnoses. Part of the reason is, it's hard to describe to NT's what's actually going on. Brain blocks, and lack of words is part of the problem, plus, it seems impossible when sometimes WE don't even know what the heck is going on. A lot of us who were diagnosed as adults, started out as self diagnosed, so, we're here for you and we believe you. Nuff said.

 

[Servelan]

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.

Yeah, that would be the Bible, in various iterations.