What motivates Self-Diagnosis?

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I've been browsing these forums for a couple days now, and it seems many members are self-diagnosed. They conclude they have AS because they share many problems and behaviors with other people who have been officially diagnosed, despite the fact they themselves are not exhibiting all the symptoms of AS. I've read this is acceptable because autism is a spectrum disorder, and at the higher-functioning end of the spectrum some symptoms may drop off or become minimal.

I have also read that the family and friends of some members don't believe they're really an aspie, which suggests either their family/friends are unperceptive or their autism is so light it is of little consequence. Some of these people seem to be upset they can't convince those people they are different. Ah, but not being able to convince people you're autistic doesn't mean you're not, does it? This thread has certainly given me a bit to think about. Maybe autism isn't an illness that "happens" to someone. Maybe it's a way to describe how someone is.

So my actual question is, why would someone want to describe oneself as being autistic, especially if no one else notices or suggests it?

I imagine if someone found they couldn't form meaningful, lasting relationships a community containing other people with similar situations would look pretty good (oh the irony), regardless of the fact they'd be putting on an identity that many NTs would call "ret*d" . As long as the person's got a place to belong, the scorn and disregard of the majority can go hang itself. I personally think self-diagnosing AS is an effort to fulfill the need to belong. In a way it reminds me of the goth kids in high school who were all very dark, sinister, and lonely people. Together. Which strikes me the same way someone walking out of a Chinese buffet saying "I'm hungry" does.

Honestly there's nothing I would like to do more then to throw up my hands and say "That's it! I'm an ASPIE!! !" and have done with it, but over the years I've grown a bit wary of presuming I belong somewhere I don't.

Was the pure, undiluted need what motivated you to diagnose yourself? If not, what? Discuss, eh?

Someone sent me the AQ test and I got a score of 34 - that was the first time I heard about Asperger's. The diagnosis found me
This motivated me to search for other tests - RDOS, EQ-SQ, BAP test, etc. I got similar results in all of them. Later my brother told me that his shrink suggested that he may be autistic and then I realized that my father has strong autistic traits too...

So... I wasn't really looking for (self) diagnosis, but now that I know that I may be an aspie, many things make more sense...

I wasn't looking for a diagnosis, I just stumbled across it. I heard a description of AS on tv and it caught my interest. I then began reading about it and was struck by how a lot of what I was reading described me. The more I read, the more introspective I became. My life suddenly made sense. One reason I then sought a professional diagnosis is to relieve the feeling that maybe I WAS just trying to fit myself into a community in which I didn't really fit.

I already see a pattern here.

Well, in my case it was because there was something horribly wrong with my life that I couldn't explain and I wanted to understand.

I think that's a good thing. I'm not a fan of the majority. I have contempt for the majority.

I was an undiagnosed member of this forum before I was a diagnosed member of this forum. I went to three seperate doctors (for a second and third opinion), and two out of three of the doctors I went to say I have Asperger's. My conclusion would be that there's not always universal consensus on what Asperger's really is. However, I'm still the same person I was before a diagnosis, and I still have the same life issues. I saw that on this forum many of the people here have life issues I can relate to, and that was the case both before and after I went to see a doctor. So, really, what is the difference between a person who has been diagnosed as having Asperger's and a person who suspects they have Asperger's? I don't see one.





The first quotation is the question you asked. The second quotation is the answer. You answered your own question.

I have this chronic problem with self-dxing I'm trying to get over with... but I have for sure problems in many areas and I'm trying to sort them out.

I came across ASD's when I had to work with someone with a spectrum disorder. I noticed he acted a bit like me when I was a kid (I was dxed with severe ADHD actually), and I looked into it more and saw some similarities. Unfortunately, soon afterward I totally lost control of my emotions and started developing psychosis. I had to be put on meds, and I've had a variety of labels such as bipolar, major depression, psychosis, and now schizoaffective.

What still makes me wonder is the red flag symptom of special interests. I have those strongly. Much of the other stuff I have however could be explained by the other dxs I have or had. The mental health professionals say that the other disorder problems is the case... but I found out many people that know me think I'm an Aspie. Mental disorders run on both sides of my family, and my mom's side of the family lots of people have problems with social interaction and social anxiety.

At one point, I called myself an aspie, but I am trying not to anymore, until I know for sure. A couple of online tests that test body language and mind in the eye put me in the autistic range, but on other tests like RDOS, I score just below threshold (RDOS about 125 aspie, and 100 NT)

One of the great things about WP, WD, is the lack of any membership requirement beyond a simple desire to be here. Yes, some folks have been professionally diagnosed, but not always correctly ... and the same seems true of the self-assessed. In some cases a professional diagnosis has proved to be a good thing, but I happened to already be 31 when any kind of AS diagnosing was just getting started even though our "condition" had already been around for how long?! I do not know.

I drew my own conclusion after talking with an NT before I ever got here.



I do not know what you mean by "all the symptoms", but I do know some of mine are not as troublesome as they are for others, and I do know no two AS/HFA folks are identical.



The world of ignorance and misunderstanding runs deep. Soon after becoming aware of my own case, I sent an e-mail to my father, one of my three brothers and my two daughters ... and to this day, not one of them (and they all have since heard) has said a single word to me in response about that. Maybe they believe, or maybe they do not. I might never know.



Personally, I would rather have them argue than to just ignore me.



You got it.



Why should anyone be ruled by ignorance or misunderstanding?



I did not come here simply because this placed looked good, and the NTs who know me as I really am are very well aware I am far from ret*d.



In my own case, it was the only way to get a diagnosis at all.



No need to throw your hands up! Just come on in and sit for a while.



Finally, some true peace of mind.

I apologise for my simple words. I'm not very knowledgeable in psychology. I'm just trying to explain how I feel.

I'm not trying to convince my family of anything. I told my mother that I was. She didn't challenge or deny it simply because she doesn't understand anything about AS or Autism.

Self-diagnosing myself wasn't about anyone but me. It was about all the pieces of my life falling into place and my past experiences making sense to me like they never have, realising for the first time in my life who and what I really am, stepping back, taking a deep breath and feeling like I have finally come home.

Yes, the realisation that I'm not the only one like this, hit me from seeing my reflection in other people's words. But we are all unique at the same time.

There is nothing wrong with socialising with people who have some of the same characteristics and similar experiences, supporting each other and helping each other makes life easier to live. And yes its wonderful to feel like I belong. But that is not the reason I self-diagnosed myself with AS. I did it because this is really who I am and this is helping me to realise my strengths and weaknesses so I can learn, grow and hopefully become a better human being... Live a happier life.

Belonging is great... Understanding yourself is priceless!

I've been diagnosed but in my self dx days when I found out about Asperger's it was like not only did I find one other person like me but hundreds, even thousands like me. Before that I did not know a single soul like me. So having this explanation for my oddities, my very slow development was such a relief for me. There was a sense of belonging, finally, to a group of people. Though through the years I've notice that we're still different but we do go through the same things and it's just so great to share things with people that we can't always share with our friends or family.

Yep. That, and I work in the neurological field and could no longer deny what was obvious as hell to me (tried for years).

~Kate

I did not start considering that I might be autistic until random people on the Internet started suggesting I might have it or even "insulted" me by calling me an Aspie. Before then, I was a weird, quiet kid who was often sent to counseling by my schools because I was so quiet and so weird they thought I had a psychiatric problem. In fact, at 14 I was given a grant to attend a private high school based on high test scores, but then the school refused to accept me my sophomore year unless my mother sent me to a professional psychiatrist. I would randomly burst into tears, barely talked to the other students, and had a great deal of trouble getting to classes on time or remembering due dates for papers. My mother decided to put me in public school rather than get me evaluated.

The earliest school reports on my progress have me reading at a college level by the 3rd grade, yet not playing with other students and engaging in odd behaviors like sucking on coins or compulsively drawing on my desk. I still do not have a professional diagnosis, but my roommate recently was diagnosed and I'm trying to make arrangements because I've often had difficulty progressing through school and holding down a job, and I think a diagnosis could get my foot in the door for skills training or more helpful kinds of therapy.

The mental situation for me is clouded by the fact that my family is very crazy and it's hard to tell if I'm aloof and unemotional because I was abused or because of an innate problem.

Last edited by Sholf on 11 Apr 2010, 9:52 pm, edited 3 times in total.

Mine turned out to be correct. It came from thinking:
I do not connect to people, and I have very little idea of how to deal with them, as I have no soical intuition. Environments that don't bother most people cause me pain. Ten-year-olds are more organised me. Getting anything done is a struggle because I have trouble moving from one thing to another. I become interested in things in ways that most people don't seem to. I am way behind my age-based peers in certain areas despite being intellectually gifted. Something is going on here, and this something is causing problems.

I tried to find out what the something was, and when I found AS, it fit. I subsequently spent some time researching other possible conditions in case it was something else.

Well, in my case, I don't. I think maybe I've mentioned having autistic traits at one other mental health related forum. Maybe. Otherwise, I haven't had reason to. I haven't yet run into a situation where I thought mentioning it to someone else would help with understanding. Seeing myself as partly autistic is for my own benefit.



I think self-diagnosis is a bit of a misnomer. We aren't trying to do a diagnosis. It's not about trying to put a psychiatric label on ourselves.

It's about self understanding.

The main reason homosexuals don't "self diagnosis" and those with autistic traits do is because one brain difference is considered a disorder, and the other isn't. I can call myself a geek, and it's not a "self-diagnosis", it's simply a self description.

Those who self diagnosis I think are just looking for self understanding, and happen to find it with a diagnostic label rather than some other kind of label.

That's what's true for me, except that I don't say that I have autism or Asperger's. I have traits, and used to be more autistic than I am now. I'm pretty sure I don't qualify for a diagnosis based on current stuff, and I'm not even going to try to guess as far as the past.

But the reason I'm here is because the label fits well enough for me to think this place has something to offer me. I don't need the certification of a psychiatrist (or other diagnostic professional) for that to be true.

I actually stumbled upon the DX information while looking up info on my brother. A friend mentioned that he acted similar to another AS kid she knew, so I thought I ought to know more about this condition that he very possibly, in the mildest sense of the word, could have. What I found floored me. I don't think anyone has been able to explain me as well as Asperger did forty three years before I was born.

So that's how I came to the self diagnosis idea. Since then I have received an informal DX from an actual practising shrink, but nothing firm. It was more of a series of conversations with someone who would know, not something I could take with me on paper.

I've noticed, it seems every year or so there's a whole thing about the formal DX versus the home DX. I sincerely hope this isn't another one of those wars.

Haha, I seriously am not trying to start a war. These are some very good responses.



It looks like the main reason people identify with Asperger's is that it describes who they are pretty well. It's not just about finding a group that will take them in, but is also about understanding oneself and knowing that other people have the same quirks they do.