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Two Questions
Yes 28%  28%  [ 7 ]
No 60%  60%  [ 15 ]
Possibly 12%  12%  [ 3 ]
Total votes : 25

btbnnyr
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02 May 2014, 9:47 pm

I don't care about the terminology.
I care about the process of diagnosis, and I don't think that self-diagnosis is complete enough to say that one has autism due to lack of observation and analysis from outside own mind.
Professional diagnosis is not perfect either, but it usually includes self-report + clinical report from outside + early childhood history from outside, while self-diagnosis lacks two of three.


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skibum
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02 May 2014, 9:53 pm

btbnnyr wrote:
I don't care about the terminology.
I care about the process of diagnosis, and I don't think that self-diagnosis is complete enough to say that one has autism due to lack of observation and analysis from outside own mind.
Professional diagnosis is not perfect either, but it usually includes self-report + clinical report from outside + early childhood history from outside, while self-diagnosis lacks two of three.
Oh, I see what you mean. It would be really good if the process could be changed to really be thorough and consistent.


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btbnnyr
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02 May 2014, 10:04 pm

The professional diagnostic process can lead to misdiagnosis either by not diagnosing autistic people with autism or diagnosing non-autistic people with autism, and both probably happen at rates that are difficult to know at this time.
It is not an ideal system or even in my opinion a particularly good system, but it is what is currently available with our level of knowledege and technology.
Although it is not ideal, it at least covers three major things that need to be taken into account when making an ASD diagnosis.
In the future, the system will improve as knowledge and technology improve to cover more major things and perhaps decrease the importance of current measures like self-report and clinical report and childhood history report, all of which are highly subjective.
Unlike professional diagnosis, self-diagnosis only covers one thing, self-report, so no matter how much someone knows about autism or the brain or oneself, the process of self-diagnosis is still fundamentally incomplete.


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skibum
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02 May 2014, 10:09 pm

btbnnyr wrote:
The professional diagnostic process can lead to misdiagnosis either by not diagnosing autistic people with autism or diagnosing non-autistic people with autism, and both probably happen at rates that are difficult to know at this time.
It is not an ideal system or even in my opinion a particularly good system, but it is what is currently available with our level of knowledege and technology.
Although it is not ideal, it at least covers three major things that need to be taken into account when making an ASD diagnosis.
In the future, the system will improve as knowledge and technology improve to cover more major things and perhaps decrease the importance of current measures like self-report and clinical report and childhood history report, all of which are highly subjective.
Unlike professional diagnosis, self-diagnosis only covers one thing, self-report, so no matter how much someone knows about autism or the brain or oneself, the process of self-diagnosis is still fundamentally incomplete.
I understand what you are saying now. It definitely makes sense to me now. Thank you for taking the time to continue to have this conversation with me so that I could come to an understanding of what you meant. I had not understood before. Sometimes it takes me a while and you have to really explain to me. I appreciate that. But I see exactly what you mean now and I see that what you are saying about the diagnostic process is correct. I will be curious to see how it evolves in the future. Hopefully it will get better.


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daydreamer84
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02 May 2014, 10:46 pm

KingdomOfRats wrote:
daydreamer84 wrote:
KingdomOfRats wrote:
as for the original topic,we have had two extremely contrversial infamous members here in the past; droopy and john best jr ,they were allowed free speech of their beliefs as long as they stuck to the rules, the community just got on with it;that isnt the close minded view of WP being given in the OP.
its not the fault of wrong planet for having more popular beliefs as some groups naturaly have a lot more representation


I don't know, I think there is too much censorship on WP. I think sometimes unpopular opinions do get suppressed, like threads about self-diagnosis and over/mis-diagnosis getting locked before anyone breaks any rules.

it might be different now compared to back then daydreamer,and it probably depends on what moderator is on at the time as they all operate a bit differently with their ethics,but those two [droopy,JBJ] were/are full on anti autism and profound pro curists,one of which publicaly bullied amanda baggs often....eventualy....they got banned along with all their eventual sockpuppets,we have also had one member fataly shoot their neighbours and themselves after getting wound up by members who publicaly bullied him on his spelling,WP mods are the same as us they have the added barrier of being autistic to some degree,they can make mistakes and theres a thin line between what is under moderation,what is in the middle and what is over moderation.

itd be nice to have all opinions aired,if we all just spoke with respect in mind of others differences, obviously itd never happen but maybe if we had one board on here where it was only accessible by agreeing to a disclaimer and any bullshterry towards others such as saying all LFAs need curing or HFAs dont have real autism woud be banned from that board,however;saying they wish their own child with LFA was cured or they believe their aspie child or themselves dont have autism is a different thing.
its nice to learn about different views but also help others to understand what its like from different views as well,but because of the nature of autism and anxiety people here can think theyre always right and get wound up to easy.


I am completely against anyone being bullied, abused or insulted on WP and I think that kind of behaviour should be stopped by mods.

*Also, you're right that it can be a hard judgement call to make for mods, when to stop a thread. It's just that in the past I think some threads were stopped that didn't need to be just because they were controversial and people were starting to get would up but not attacking each other.



Last edited by daydreamer84 on 02 May 2014, 10:51 pm, edited 2 times in total.

daydreamer84
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02 May 2014, 10:47 pm

btbnnyr wrote:
I don't care about the terminology.
I care about the process of diagnosis, and I don't think that self-diagnosis is complete enough to say that one has autism due to lack of observation and analysis from outside own mind.
Professional diagnosis is not perfect either, but it usually includes self-report + clinical report from outside + early childhood history from outside, while self-diagnosis lacks two of three.



btbnnyr wrote:
The professional diagnostic process can lead to misdiagnosis either by not diagnosing autistic people with autism or diagnosing non-autistic people with autism, and both probably happen at rates that are difficult to know at this time.
It is not an ideal system or even in my opinion a particularly good system, but it is what is currently available with our level of knowledege and technology.
Although it is not ideal, it at least covers three major things that need to be taken into account when making an ASD diagnosis.
In the future, the system will improve as knowledge and technology improve to cover more major things and perhaps decrease the importance of current measures like self-report and clinical report and childhood history report, all of which are highly subjective.
Unlike professional diagnosis, self-diagnosis only covers one thing, self-report, so no matter how much someone knows about autism or the brain or oneself, the process of self-diagnosis is still fundamentally incomplete.


strongly agree.



Dan_Undiagnosed
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03 May 2014, 8:46 pm

I've been fairly open with my self diagnosis, hence the username. Most other people I come across here though in the threads claim to have diagnosis. So no, I don't think the discussion here is directed by what I see as a minority. I haven't seen self dx'ed people aggressively defending their self dx either. Maybe I'm just not following the right threads.



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04 May 2014, 3:13 am

1. No.

2. Yes.

But not necessarily the narratives you're thinking of.


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Acedia
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05 May 2014, 8:59 pm

Who_Am_I wrote:
But not necessarily the narratives you're thinking of.


Interesting, which narratives are you thinking of?



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06 May 2014, 2:01 am

I fail to see how anyone here "governs" the forum; we are entitled to read or not read any posts we choose; if you don't want to read long posts from self-diagnosed/suspected aspies who are just looking for answers, that's your right; why should they not have an equal right to ask their questions?

Obviously not all self-diagnosers are correct, however, as Skibum said, we do not have the authority to dictate who's wrong and who's not here on the forums; if we did, there would be no need for proper assessments. You say it's the expected norm that we all accept such self-diagnosers as 100% valid, but that's not true. I've seen many "have I got Asperger's" posters who received straightforward, logical advice such as, "I'm not sure, but you don't sound like you have AS because...." Not everyone always assumes that every self-diagnoser is correct, however, for those who have come to the forum as self-diagnosed and who aren't looking for answers or validation of their self-diagnosis, it's simply a matter of respect that we acknowledge their status and treat them like anyone else. There is no reason to ostracize or be unkind to someone simply because they don't have access to the resources for a diagnosis that they need. It took me over two years to find a place I could afford to do my test for me, but in that interim, my lack of funding and resources did not make my symptoms and struggles any less legitimate.

Can you give an example of an instance in which Autism Speaks actually did something effective for the autistic community, rather than for the parents who are "suffering" as a result of raising us and who just want to jab us with a needle and cure us? (Not saying all parents of autistics are like this, pretty much just the ones who believe in Autism Speaks, because it offers the propaganda they're looking for.) Can you find a person who agrees that Autism Speaks is a good idea who is also in favour of autistic rights and equality? There's a logical reason the majority of people around here hate that organisation, and it has nothing to do with "bandwagon appeal".


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Last edited by StarTrekker on 06 May 2014, 2:18 am, edited 1 time in total.

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06 May 2014, 2:17 am

Callista wrote:
These are people who have either autism or a problem that's severe enough to make them consider autism as an explanation. When they can't get help--because they can't pay, because the stigma is too risky, because their parents don't believe in psychology--they need to start with some kind of working hypothesis if they want to try to help themselves as best they can. That's what self-diagnosis is. Those people are having a hard enough time as it is, without professionally diagnosed people lording it over them, as though being lucky enough to have access to medical care made a person somehow a more valid part of the autism community. Like it or not, lack of access to services is a problem we as a community have, and need to address; we can't just ignore it by pretending that self-diagnosed people are just being overly dramatic or something.


Beautifully said Callista, couldn't have put it better myself.


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Acedia
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06 May 2014, 2:38 am

StarTrekker wrote:
I fail to see how anyone here "governs" the forum; we are entitled to read or not read any posts we choose; if you don't want to read long posts from self-diagnosed/suspected aspies who are just looking for answers, that's your right; why should they not have an equal right to ask their questions?


I don't think you've read my posts. I'm okay with people enquiring and seeking support - page 1. But I am critical of self-diagnosis, at times. Because I've read far too many threads, and even people recently diagnosed, that mention they display hardly any of the symptomatology. Or they mention things that don't really have anything to do with being on the spectrum. I can understand and respect ignorance, but it seems to be the same mistakes over and over again. I think there are people out there who think autism is being shy with a few personality traits.

So I point out that many do wrongly self-diagnose, and this is often considered controversial or rude. And it does cause upset. There's no denying that self-diagnosed posters are quite "active" on here, and often react too sensitively.

StarTrekker wrote:
Can you give an example of an instance in which Autism Speaks actually did something effective for the autistic community, rather than for the parents who are "suffering" as a result of raising us and who just want to jab us with a needle and cure us?


Can you give me an example where I said I support Autism Speaks? Not a fan - OP. But it's one example of a pervasive narrative. And we don't speak collectively for LFA, or anyone with autism. Many of us disagree, and have our own opinions. I don't view a cure as a bad thing at all. Because autism causes a lot of grief. And not just because of intolerance from others.

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06 May 2014, 3:23 am

I think of it this way. I self diagnosed with borderline personality disorder before. It was heavily implied I had it, but I was never formally diagnosed. All of the BPD people always accepted me. It was in their view that if you think you have this horrible illness, you should try to identify it and get help.

I have self diagnosed with OCD before and I do indeed think I have it. I was formally diagnosed with this.

This along with PTSD, Bipolar, so on. But I was eventually formally diagnosed with those, too. On every single forum that I was on, not one person felt insulted that I felt like I had Bipolar or anything else. Why? Because I took it seriously and they could see my distress and my obvious symptoms.

The people on here who self-diagnose seem to do so because they are in distress. A lot of us can't get a formal diagnosis for various reasons (often financial). I say if the traits fit, and you get along with other aspies, it may be extremely helpful to self diagnose and attempt to "self help". Self diagnosis is often a vehicle for formal diagnosis, anyways. For those of us that have been misdiagnosed and are on the spectrum, it can be helpful to self diagnose (if you've done enough research). I was told time and time again I was not autistic, and yet I knew I was. I just had suspicions at first. It took me a year to actually dissect my thoughts and determine my objective problems. I then went and had the testing done.

I personally did not self diagnose until right before my test. Up until then, I made absolutely sure that I had the traits and was being as objective as possible. I find many others here are the exact same way as me. If I didn't find the non-profit center who diagnose me, I would not be diagnosed even though I am autistic as it would have been too expensive.

It's important to remember that if you have access to crappy mental health care, you probably will be misdiagnosed. Unless you have fictitious disorder, I believe a lot of people on here don't just impulsively make a diagnosis. They go through logical steps and really understand themselves before even attempting it. A lot of mental health professionals insisted I was wrong about myself and told me to stop trying to self diagnose, even though I was way more correct than they would ever be. This is because I listened to myself and didn't jump to conclusions.