Two questions

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It's an awkward conversation. I'm gullible but I have trouble reconcilling the seemingly oppositional assertions that I have value and that society should actively pursue discoveries that would have screened me from living.
Especially since some of us seem to be struggling with issues of self value. This juxtaposition can be irking.

Some people say that they are not HFA, but that is because they are using their personal standards which are different from clinical/scientific standards for HFA, which are usually autism with IQ>70 or 80. Those standards don't say that you must have job, friends, or romantic relationship to be HFA, only that you have autism, and your IQ>70.

Than people should not be able to say that they have BAP either; Nor should they be able to say that they have Autistic traits unless they have a professional diagnosis for those as well.

I can actually see your point. Self diagnosis brings in subjective bias.

No, it doesn't mean that.

People can say that they have autistic traits, and they can talk about their traits here, and I take their autistic traits as seriously as I take mine, and I welcome them to do research studies comparing people with high and low autistic traits to see if behavioral traits can be related to brain functions and quantified to understand them in terms of brain functioning and ASD.

It is only saying that they have the disorder that is an issue when they have not been assessed by someone trained and qualified to assess them.

Ok, fair enough. I see your point and that is fair. Now in the case of someone like me. What do you honestly think?

I was evaluated for two years by a professional in the field of Autism but not in a clinical setting. My case was also openly discussed over that two year period by other professionals in the field also not in a clinical setting. I did not pay for any of this and it is not officially on record. And at the conclusion of this two year "field study" I was pulled aside and told for the first time in my life that I am on the Spectrum and that they could tell from the moment they saw me but decided to observe me for an extended period of time before letting me know. My actual life was observed every day for months over a two year period. Then I did my own research for 18 months and during that time I consulted the person who evaluated me every step of the way and he also consulted his colleagues. Then I was evaluated by a psychiatrist who has known me since I was born, but also not in a clinical setting. Again none of this was official nor was it done in the traditional clinical way. I have no paid paperwork for this. I don't have an official diagnosis. I was not evaluated in a clinical setting so it can be argued that I was self diagnosed. Anyone can argue with me that without the paper work since they don't know the people who evaluated me, they can't guarantee their qualifications even though I know full well what their qualifications are. So in that regard people can tell me, since I don't have an official diagnosis I can't say that I am on the Spectrum. But I would argue that I think that the thoroughness by which I was observed and evaluated would be just as good as spending some hours in a clinic talking to a total stranger and filling out tests.

But I totally understand your point and I agree with it. But I also think that because we don't know what self diagnosed people went through to come to their conclusions we can't make blanket statements. And because they probably can't get any real benefits anyway. the little life pleasure benefits that they would be denied just because of how they would be having to phrase things would just be cruel.

I really think that if you say that you self diagnosed than that is exactly what it means. People are intelligent enough to know that if someone says he is self diagnosed than he is not speaking as someone who has a clinical diagnosis. If someone claims to have a clinical diagnosis and does not then that is a problem. But if you say you are self diagnosed than it is fine for people to assume correctly that you possibly might not have Autism but you, by virtue of your own research and resources and by your own understandings, actually believe that you do. Than whatever you say on the subject can be viewed with the full knowledge that you believe you have Autism because of your own research but it is possible that you don't.

And if anyone is wondering why the psychiatrist did not diagnose me when I was little, the first reason is that I did not live with or near this person. So the person did not see me enough to do that. The person saw me regularly,every few years when we would visit but not as a patient. Secondly there was no Autism Spectrum diagnosis when I was growing up. It did not exist. Back then you had to be severely classic and super obvious in very stereotypical ways if you were going to get noticed. But even in the evaluation we did the person was able to tell me things they remembered I did as a young child that fit the criteria of the DSM 5.

Last edited by skibum on 02 May 2014, 2:50 am, edited 2 times in total.

I don't have an opinion on your case, and I am not qualified to have a professional opinion.

I am not interested in individual cases, but it is the culture of self-diagnosis that I am interested in, as I dont' think that ASD should be self-diagnosed based on subjective internal perceptions by people of themselves and matched to criteria that they may or may not understand or use correctly if they use them instead of using their personal standards and following their personal biases.

Oh, I see more clearly what you mean now and now I understand your position. It makes a lot of sense to me now and I certainly agree with your perspective.

There have been instances in the past where people were attacked for self diagnosing where it was their only option of making any kind of sense for the turmoil in their lives. I can see clearly now that you are not doing this at all but are simply stating something very logical that makes total sense.

Just a comment. I would think you would have to be quite good at perspective taking (seeing yourself, from another’s perspective) to assess whether or not you have deficits in social communication and social interaction, based upon DSM criteria. More so, because it is a development disorder, you would need to make this assessment based upon when you were a young child. It's not easy to do. Even for professionals, diagnosing adults is not a straightforward activity.

Do you feel that self-diagnosed auties and aspies dictate this forum??
No opinion "dictates" this forum

And are there pervasive narratives that dominate on this forum?
Yes there are

NT's are inferior, dumb, only care about their social ranking etc, look down on Autistics etc.
"Autism Speaks" obviously.
Autism a life long condition mostly genetic. The vaccines cause it view is evil.
Hyper sensory sensitivities (Every definition I have seen say Hypo and Hyper sensitivities)
The term "Aspie" has negative connotations (elitist, ableist,wannabee, faker)
Related to above DSM 5 was right to take away Aspergers as a diagnosis
The last two is recent. It was the opposite when I started here late last summer.

That is it for now do not have much time.

Ironically that is basically what my psychologist did when I went in for an assessment. I feel like what I walked out with was a "self-diagnosis" based on my own internal perceptions; the only test that I took was a 200 question one that I could have done myself online and gotten the same results. Admittedly, she saw how I appeared in person better than I could have, but after she diagnosed me, even she said "Do you think you have Asperger's? Only you know what it is like to be you."

I'm startled by the testing experiences of others on this forum, though -- loooong, expensive, sometimes weird and painful, and ultimately inconclusive.

I have read a few stories like yours and that is why I wish that people could be seen and observed the way that I was. I know that it's probably unrealistic that people could be and I was very very lucky to find out the way that I did. But sometimes I really wonder if a doctor who is just seeing you for a couple of hours and just has you fill out a test can really make an extremely thorough and accurate judgement. When I was being observed I did not know I was being observed. So he was able to see me in my most natural state interacting with others and with my environment over a very long period of time. He also got to know me personally and talked to me about all kinds of things over that time of initial observation.

I wonder if there is a way that the diagnostic process could be changed so that people can be observed in their natural interactions outside of a clinical setting. Maybe setting up a home camera to record how they are at home or giving them an audio recording device to wear so that conversations and "social" situations could be recorded over time for review. Or maybe having people keep blogs or diaries to give doctors a more thorough insight on their daily lives.

There is one narrative brought up in self-diagnosis threads about diagnosed autistic people wanting to be a special club of "real" autistics who want to exclude others like self-diagnosed people.

In the minds of most people who question self-diagnosis, I don't think that is true.
I am not interested in being in that club.
I am only interested in questioning self-diagnosis.

I think the fundamental problem is that Wrong Planet, like most internet forums, is mainly populated by people who have no real interest in logic or debating ideas properly.

In such environments, the majority viewpoint always wins. This is what you have observed in your descriptions of certain pervasive narratives.

Which would you prefer?
1. A forum on which everyone agreed with you, but was unable/uninterested in having a logical or thorough discussion with you
2. A forum on which everyone disagreed with you, but took the time to argue with you rationally and intelligently.

I'm guessing, that like me, you'd prefer the latter. In other words, I suspect its not really peoples beliefs that bother you, or the range of diagnoses/lack of diagnosis on here. But rather, its that fact that people don't engage with your beliefs and ideas in a logical or rational way.

Actually its the general lack of logic on here that makes me suspect many people of not being genuine AS . But then I'm not diagnosed myself so its really not my place to comment.

Why? This is not part of the diagnostic criteria.