Harm and undermining of the self diagnosed on WP

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QuiversWhiskers
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21 Jan 2015, 8:54 pm

I think these discussions of validity are good. It's a reminder to those of us who think we are or might be autistic to be cautious of confirmation bias and our own limits of understanding.



Norny
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21 Jan 2015, 9:11 pm

I don't think WP is a good diagnostic tool.


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L_Holmes
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21 Jan 2015, 10:30 pm

I agree with The_Walrus, I feel like the, "only a qualified professional can make a diagnosis" response is very unhelpful. At least for me, when I joined WP, I was not expecting anyone to give me a diagnosis. I already knew that nobody here could do that, that should be pretty obvious. I don't think that most people who join are expecting that either.

WP isn't a diagnostic tool, but it can give people a better idea of whether or not they have good reason to seek an evaluation. I joined because it allowed me to, rather than just reread the DSM and the countless online lists of traits that may or may not be really accurate, actually ask people who do have a diagnosis and would therefore probably know a lot about autism.

Mostly, I wanted to see if I would be able to relate to the people here and vice versa, which I couldn't really do in real life, regardless of whether I saw a professional about it (unless the professional was autistic). I think WP is very good for that (as long as people aren't saying, in essence, "Go see a professional, then come back." That's not literally what they're saying, but I think it may seem like that to some.)


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vickygleitz
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21 Jan 2015, 10:49 pm

If I had been tested 12 years ago, there is no way that I would have been diagnosed. I WAS diagnosed 8 years ago and I dismissed the diagnosis because the experts KNEW that Autistic people had no empathy and were incapable of REAL HUMAN love [ ah, good ole Lovas] and I knew that I loved deeply and could not help but feeling others' pain.

If I had been misdiagnosed 12 years ago, and if the "experts" were still claiming that Autistic people were incapable of empathy, I would STILL be Autistic. Maybe I would not lay claim to the label, but I would still "know my own," AND know myself as well, except for when people told me that I had no right to "self-diagnose." Then I would feel hurt and confused and alone. Since feeling hurt and alone and confused seems to be a fairly common Autistic issue, maybe none of us should say things that will only make others feel worse.



B19
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21 Jan 2015, 11:12 pm

Yes Vicky your empathy is one of your strongest characteristics, I can see what you are saying very clearly.



ASPartOfMe
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22 Jan 2015, 5:32 am

Fnord wrote:
ASPartOfMe wrote:
The same you are fakers, excuse makers, everybody is a little shy, deal with it an other invalidation accusations from family, friends and some professionals just how it is for a lot of professionally diagnosed also. With the professionally diagnosed you can add moocher, it s a fake disease, so overdiagnosed and other reasons why you don't have it . Self diagnoses is just another excuse for bullies to pounce. There are legitimate reasons to question the validity of self diagnosis, fear of what the NT's might think is not one of them
It is if those NTs have influence or direct control over your employment. Imagine getting a supervisor who believes that all asthmatics are faking, that all epileptics are trying to get on disability, and that all aspies are just whining, complaining little pansies who just want to be coddled and paid for doing virtually nothing. If it was just your word against theirs, you would be out on the street in very short order (if you were ever hired in the first place); but with an official diagnosis of a disability, you would have a legal basis to fight any discrimination or harassment, or at least get a good parking space near the door.


What I am saying in most cases with this type of person it won't matter if you are self diagnosed or professionally diagnosed they are going to think that of you anyway and fire you, more likely they won't hire you in the first place. In YouTube and Blog comments I have read which is a lot, the fake disease/overdiagnosed comments have traditionally far outnumbered complaints about self diagnosis. For a few weeks after Seinfeld (which was technically not self diagnosis but was perceived that way) self diagnosis had a lot more prominence but the prominent theme was High Functioning is not real Autism. Bullies don't care about the word they use, it is just a technique to invalidate you so they can enjoy seeing you squirm. That is why changing the name of words used to insult such as ret*d and Aspie is ineffective.


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dianthus
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22 Jan 2015, 11:06 pm

I basically just feel a lot of dread and anxiety about posting here now. I don't want to put myself up as a target for any criticism, attack, interrogation, misunderstandings, insinuation, insults, debate, arguments, etc. Even if it doesn't happen to me, seeing it happen to other people is very stressful for me.

It's not just the self-diagnosis discussions, it happens across the board. There is something else here that bothers me a lot more than the criticism of self-diagnosis...that is the rampant dissing of things like spiritual beliefs and paranormal experiences.

But as for the comments against self-diagnosis in particular...it has put me in a very weird place emotionally because I feel like I just don't belong here anymore. I understand that according to the forum policy I am welcome to post and participate. But I don't feel welcome to actually talk about having any autistic impairments, or for that matter, any other kind of impairments or problems I have in life. Because now I feel like people are going to be judging me or resenting me for talking about myself and my own problems right alongside people who have been diagnosed.

Up until the recent discussions about self-diagnosis, and up until I came to the conclusion to diagnose myself, I felt comfortable just posting here about my autistic traits and impairments. Say for instance if people were talking about sensory problems, I felt comfortable just chiming in with my own experiences. But NOW I feel like whatever I say about myself is going to be judged as less valid or genuine because I don't have an official diagnosis. I feel like people will assume that I'm exaggerating my symptoms, or seeking attention or whatever other idea people have about it. I feel like I won't be taken seriously.

The irony is, that this is probably the biggest deterrent for me in seeking a diagnosis to begin with. I fear that I just won't be taken seriously. Actually it's not so much that I fear it, as I just know it's the most likely outcome, considering the way things are. So the recent discussions here have pretty much just cemented my understanding of how life works. For people like me, there is no help available for anything, no services, no appropriate counseling or therapy, no support, no understanding, nothing.

This forum was the one and only meager support that I had for my autistic impairments. And because I have a lot of difficulty just finding the normal social supports that most people find in friendship, family, community, marriage, etc. I really NEED a place like this forum. But I do NOT need the stress and anxiety that comes with posting here. I do not need to be around the debates, arguments, attacks, or general rudeness that goes on here. And the way some of those folks act is downright territorial, so maybe they need this place more than I do. Fine, have it.



androbot01
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22 Jan 2015, 11:30 pm

^That's really a shame. As I said earlier, I think WP should be more supportive of the undiagnosed as a lot of adults have been missed. I got to a point where I attempted suicide and that is how I got my diagnosis.
There does seem to be a cult of the diagnosed here. I don't know why.



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23 Jan 2015, 1:22 am

... oh well


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Last edited by tall-p on 23 Jan 2015, 1:29 am, edited 1 time in total.

Rocket123
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23 Jan 2015, 1:23 am

Norny wrote:
I don't think WP is a good diagnostic tool.

I would guess that anyone who frequents WP and posts semi-regularly probably has something "abnormal" going on (by "abnormal" I simply mean different than what is deemed normal). What precisely? Who knows. So, in that regard, I think WP is very inclusive. As that old Apple commercial says, "...Here's to the crazy ones. The misfits..." Welcome to WP.



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23 Jan 2015, 1:41 am

To an extent, I tend to think that anyone on the spectrum, by the time they have reached adulthood (if not before) has been exposed to so much emotional and psychological stress in a continued way over time, and that these experiences, (particularly if you are a person who is hypersensitive to others' distress, and your own) result in living in a state of sub-clinical PTSD, where triggers (anything resembling the past emotional and psychological forms of abuse, verbal putdowns etc) can invoke that feeling of being very unsafe and all the anxiety that goes with the sense of invalidation and disrespect.

This is what makes it feel unsafe when the dissing breaks out. In my first year on WP, I never gave a thought to whether a poster was diagnosed or not, unless they were specifically posting about it - that had nothing to do with whether I thought their comments were valid or not. And in your case, Dianthus, I was often in awe of how in a few words you could often cut to the core of an issue, and present an overview of it that put the whole thing in greater and wider perspective for me. You seem to possess an instinctive wisdom and sensibility that is finely tuned.

After the "harmful" era - so recently concluded - I had many of the feelings you describe, and just bringing up threads made me feel anxious for a while, and then there was a short period when some of the more aggressive posters started to post things like "that's just the way I am", which is no doubt true, though sometimes with the apparent unstated implication that "there's nothing I can do about it, so you have to just accept it" - which seemed to suggest compulsion on their part, though I tend to think that choice still operates and that some of these comments were belated self-justification after some members left.

Things do seem to be more considerate now, some people do realise that they went too far (from PMs I have received) and geniunely regret any harm they may have caused. Others seem to have a naturally terse abrupt manner which was there before the harmful era and will continue, though they usually favour forums other than GAD, which is why I mainly post here.

Emotional and verbal abuse is experienced as a threat, to one's well being and peace of mind, and is a definite trigger to the subclinical PTSD symptoms, and because immediate support and validation lessens the effect of triggering, perhaps the best strategy is to contact a member who can offer immediate s and v as soon as harm is recognised or felt. I never mind receiving PMs like this, and I hope the people I would send them too - the ones whose safety has been demonstrated over time in their posts - will not mind receiving them from me if the situation arises, because that sick anxious feeling is awful. A sort of buddy system may be helpful in making this a safer place. I would choose my "buddies" not on whether they are diagnosed by professional others or not, but on their consistent demonstration of respect, courtesy, goodwill and qualities like that, and have a history of insightfulness in their posts. They are my safety net here, more than the mods really, who have their hands full.