The Stigma of Self-Diagnosis

[Aalo]

Personally, I was self diagnosed until age of 26. Before that I was quite sure about some symptoms, but didn't feel the need to get doctor's approval. The only way I could've had benefit of that was if I was going to get different medication, better therapy, or social benefits. Then I was in therapy already, and ate some vitamins and health supplements and felt no urgent need to change those. I also were a student, so there was no way I could've benefited financially.
So once I finally seeked closure in form of official diagnosis, that changed absolutely nothing. Just as I assumed. I'm not going to medicate myself out of acting myself, relieving some behavioral patterns are enough, so no need for diagnosis for prescriptions. Also, medical science isn't exactly that accurate, that I'd trust it that much. Doctors have their own ideas of diagnostic criteria, and not all patients are treated the same. So if anyone asks if I've official as or not, I'm most likely not going to answer, for I feel it has pretty much to do with anything. I will still act just the way I do.

It is understandable to question if it is a good trend to think that everyone has as, but I feel those people should not be hated. As isn't like some narcissism, where "you don't have it if you think yo might". Even purely attention seeking ones might have severe doubts on what, if something, problems they're having. Hate and dissing won't help them find any answers.

 

[Ylva]

Anger: kind of self-explanatory BUT it can also mean that the person is touchy, irritable, argumentative, gets mad over trivial things, frustrates easily or has weird outbursts such as going nuts screaming & swearing because someone accidentally bumped into him at the store. It can look like being spiteful, jealous or resentful or just distant in a huffy way. Acting even more Aspie-ish to shove it in people's faces.

Yes, definitely.

See, my stepmother and a friend of hers more or less diagnosed me when I was eleven or twelve, bit my father refused to believe it.

Then my father brought it up again when I was nineteen, and I got tested and diagnosed as not having Asperger, either because I was able to maintain eye contact, or because I didn't have any special interests (they didn't seem "special" to me, at any rate. And why doesn't "everything" qualify?) and in any case because that psychologist couldn't do his job.

So now I'm twenty-five and finally have my diagnosis.

Because he enjoys salt-rubbing, my father has not spoken to me since.

 

[Perkinsj88]

Omg yes...I know I have it, but my own wife of 6 years who likely suffers from this as well refuses to "put any stock into it" without a doctor to say its real. I am going to get the official label of being disabled....only so maybe my wife can find the same road to finding herself and her happiness again. There's still larte amounts of anger I'm holding on to...but happiness is finally a gleaming light at the end of my personal tunnel.

 

[Dark Passenger]

Yes, there seems to be a lot of stigma attached to self diagnosis. From where i come for even going to a therapist will get a person labeled as "mad" or "crazy" so many people here just suffer with it and do a self diagnosis. What other option is there? Coming out just makes it worse. From where i come there is a long way to go before people understand that being born differently or going through a phase such as depression is very natural and people sometimes need the help of a professional. It's just sad that people still discriminate people for being born a particular way or going through a touch phase in life.

 

[Ste11aeres]

The thing is, a lot of us, self-diagnosed or not, know more about Aspergers than do most professionals.
If the self diagnosed person has a truly deep understanding of Aspegers (and believe me, if he really has AS, he will...he will have spent days weeks, months learning everything about it from every source) than his/her diagnosis has more weight than that of some psychiatrist who does not specialise in AS, who maybe heard it mentioned in one of his courses in University...
I don't give much credence to the instances when somebody who's neurotypical decides that their family member/spouse has AS. In such cases, the diagnosing person often doesn't understand the ASD very well.

 

[Arashi222]

There is stigma either way. A lot of us that are older in our 20's+ self dianogsed to begin with or were told to get a more official diagnosis in school. I am officially dx'd and you know I still get much of the same thing that those with self diagnosis get. Which is:
Really? No way.
You can't be autistic you're a girl.
Really you have Autism but you don't (fill in the blank)
You just like the attention

Honestly A lot of people think even those of us will an official diagnosis of faking or wanting attention because of shutdowns or meltdowns. I think the more people know and understand true Autism and Aspergers the more people will start to understand and accept that its just a different way of thinking and perceiving.

 

[Explosition_Rooster]

I've gotten some flak from my mother about this, since she saw it as nothing more than a simple excuse for me to not act normal, so I have experienced this as well. Not being believed is so frustrating that I almost don't want to be around people until I get proof that I have it. But I realized that that won't solve the problem and simply make it worse.

I did come to attention of my problems in high school when my step-mom thought that I had Aspergers Autism, but I didn't do any real research on it until fairly recently. It also never came up in anything since I mostly kept to myself and didn't cause too much trouble until recently.

The only help that I can offer is to take each day in stride and to not let it get you down. Your different and you shouldn't let the doubts of others stop you. And while they may doubt you even after you get actual proof, that still doesn't mean that you shouldn't get down. Some people just won't believe you no matter how much proof you have

 

[Banquo]

I am self diagnosed. I am fortunate enough to know a number of ASD case workers (unfortunately unable to give official dx) and they are all certain. I would like to be diagnosed in a way but cannot afford the cost as due to being 41 and above average IQ my Drs have said I cannot get it on the NHS.

There is a stigma sometimes but mainly from other Aspies. Those I have had issues with have been the ones who treat it like an elite club and I don't meet the criteria. Most people are very accepting, I am new here and hope that I am welcome here.

 

[Ylva]

Of course you are welcome here!

I have never heard of these elite club Aspies you talk about, unless you are referring to Mensa, and I'm pretty sure most of those are neurotypical anyway.

 

[Axeman52]

I've gotten some flak from my mother about this, since she saw it as nothing more than a simple excuse for me to not act normal

I think this is the main thing i'm worried about whether or not to 'come out' as it were, and why it's very unlikely that i will unless i get an official diagnosis. It would be insufferably annoying to be told i'm just looking for excuses to not act normal when i'm spending my whole life trying especially hard to act normal by everyone else's standards.

 

[MoCoffee]

There is a stigma to being self diagnosed and I think it's incredibly unfair. I have been officially diagnosed by a Psychiatrist and would never have thought that I was autistic. After my diagnosis I started to research Asperger's and I had the same reaction so many of us have.....everything clicked. So much of what I've been through in my life makes sense now. I believe that some of the tests online are excellent for self diagnosis. Some people will refuse to believe you have Asperger's whether you are self diagnosed or diagnosed by a doctor. The important thing is to use your diagnosis to research ways to deal with your Asperger's and to find the support you need.

 

[juniorvindahl]

I self diagnoses a year ago. And a few weeks ago I got an official diagnosis. I have been very sure that it was Aspergers and the tips and tools I have found online has helped me a lot. But I am very happy to haven gotten the help from a therapist, because he has some tools I haven't heard of before and the chance to talk about the issues with him has been worth gold.

One of the biggest advantages of getting a diagnosis, is that I can get benefits and help for various things I didn't know could make me life easier.

I haven't told many that it was self diagnosis and claimed it as a "real" diagnosis. I've said that I believe it and is looking into it. Because few do believe it until they have "proof" of it. If they ask I usually say that I am fairly certain and the points that led me to the conclusion. Most agree and say that it makes sense.

Self diagnosis helped me a great deal and gave me some confidence to know that I wasn't as "wrong" as I thought. That there was a reason for most of it. But no matter what, it is still you and only you who know if it feels right and if the things you can do to help is actually beneficial to you. There is no one-size fits all when it comes to what is right or wrong. It's a spectrum after all. With the amount of misdiagnoses people get, I think it is more important to stick to what feels right for you. :love:

 

[Winter_Rose]

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 find it extremely difficult to take self-diagnosed Aspies seriously. Sorry. I'm on another Aspie site and there are so many people on there whom I'm pretty sure are doing nothing more than copying and pasting the symptoms from one site to a post on that site. It's insulting, really.

 

[Ste11aeres]

I find it extremely difficult to take self-diagnosed Aspies seriously. Sorry. I'm on another Aspie site and there are so many people on there whom I'm pretty sure are doing nothing more than copying and pasting the symptoms from one site to a post on that site. It's insulting, really.

Actually, this being the internet, it would be quite possible for someone to outright lie. And someone could also simply lie about being professionally diagnosed, as well.

 

[142857]

I don't like the term "self diagnosed".

I prefer "self identified".

I identify with the traits and characteristics of an autistic person. Whether or not a professional wants to stick a label on me or not does not change any of that.

I have never sought diagnosis. My son was diagnosed with Asperger's Syndrome when we took him to a childhood development specialist about ADHD.

People occasionally ask me if I was autistic when I was a kid, or if I have Asperger's Syndrome. I just say "probably".

 

[Ste11aeres]

I don't like the term "self diagnosed".

I prefer "self identified".

I identify with the traits and characteristics of an autistic person. Whether or not a professional wants to stick a label on me or not does not change any of that.

I have never sought diagnosis. My son was diagnosed with Asperger's Syndrome when we took him to a childhood development specialist about ADHD.

People occasionally ask me if I was autistic when I was a kid, or if I have Asperger's Syndrome. I just say "probably".

I like the term "self identified" since to me, the word "diagnosis" means recognized by a doctor. Someone can have something without it being diagnosed by a doctor, after all, it's not like the doctor causes the thing in question! And while it takes a doctor and his technology to identify something like internal cancer, certain psychological or developmental things may be identified just as accurately by a layperson who has sufficient knowledge about the thing. ALthough such a person's recognition wouldn't carry the same clout for many, since such a person has no way of proving their knowledge or expertise.

 

[Turk]

I personally dont care whether people, have issue, with me being self identified. When my son was officially diagnosed, it was an epiphany of monumental proportion. Everyday, that I learnt more about Aspergers, the surer I was. As Stella suggests, this is an area, where you can educate yourself enought, to make informed decisions. Having a diagnosis changes nothing, in terms of the work, that I need to do. In regards to my son, having an official diagnosis, bought other problems with it. So many professionals, who had a list of things, that we were told he would and wouldn't be able to do. He proved them wrong, which is why if you get an official diagnosis, you shouldn't take everything as gospel. Keeping this in mind, I have also seen ppl, denied an official diagnosis, because they didnt fit a minor detail, within a narrow minded box.

Cheers Turk

 

[Dirtdigger]

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.

Though I have been professionally diagnosed twice, I feel like a person knows more about whether they are on the Autism Spectrum or not then professionals. I just don't think a lot of professionals know as much as they should and a good rule of thumb is to go by the DSM and ask trusted friends. I think those self diagnosis quizzes do a good job too as long as you can answer them as honest as possible. I followed up learning more about my own diagnoses and have learned a lot.

 

[Ste11aeres]

Though I have been professionally diagnosed twice, I feel like a person knows more about whether they are on the Autism Spectrum or not then professionals. I just don't think a lot of professionals know as much as they should and a good rule of thumb is to go by the DSM and ask trusted friends. I think those self diagnosis quizzes do a good job too as long as you can answer them as honest as possible. I followed up learning more about my own diagnoses and have learned a lot.

I've found that professionals in many fields don't know that much about some parts of their field. In some cases, it's because the person in question is not a specialist, and the field as a whole is too broad for them to gain that great an understanding of every part of it. I find this problem a lot with General Practitioners, when it comes to medical stuff. That's one thing I find unbelievable about the show Doc Martin (which is a good show, by the way). He was formerly a surgeon, yet he knows about everything medical. This is either unrealistic, or else he is some sort of incredible genius who learned everything about every aspect of medicine, and yet who's genius is unacknowledged as such by the show's writers.

And then, some professionals just aren't that good. Such people exist in every type of job. So no reason why they shouldn't be found in the psychiatric field as well.

I think those quizzes are good to use as confirmation of what one already knows.

 

[Ylva]

I would think Dr Martin had time to do research before each show.

Autism diagnoses are unreliable, and since they don't actually know what autism is, the only way those NT psychologists can tell is by interacting with you and seeing whether you strike them as autistic. Extremely unreliable, even though they are professionals.

I'm still going with the hypothesis that the cause is failed miscarriage and that what autism really is is sensory hypersensitivity, and all the behaviours are natural symptoms and reactions to that.