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

KingdomOfRats
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02 May 2014, 8:10 pm

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.


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skibum
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02 May 2014, 8:58 pm

I think that whether you are self diagnosed, professionally diagnosed or unofficially diagnosed you should be allowed to say it. If you are self diagnosed and you say that you are, everyone will know that you might not be objective or you might not understand the depth of clinical definitions or you might be 100% accurate. If you say you are clinically diagnosed all people can know is that it was done by someone who has a white coat. So with that in mind, people should just say what they are. If you ask a self diagnosed person to say he has BAP that is wrong. He was not diagnosed to have BAP. He self diagnosed himself and that is exactly what he is saying. All of the things that go in hand with that, like things that were mentioned above, will be assumed. If he says he was clinically diagnosed than we should assume whatever goes with being clinically diagnosed. Asking people to lie about what they have done or how they came to their conclusions does not do any good. All it does is invalidate people's experiences. Now if someone is self diagnosed and says so no one says that you have to treat him as if he is the all time expert on the Autism. You treat him as someone who has studied and come to conclusions about the state of his life on his own. And he could be wrong but that is part of the territory of saying "I am self diagnosed." And people who are most likely know that and accept it. But even if you were clinically diagnosed you can still be wrong.


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btbnnyr
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02 May 2014, 9:12 pm

I didn't see posts in this thread about people shouldn't say that they are self-diagnosed.
My posts were about people not saying that they have autism when only they diagnosed themselves with autism.


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skibum
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02 May 2014, 9:36 pm

Maybe we could even take it one step further and say no one should be allowed to say they have Autism. Because a lot of diagnosed people have it wrong too.

Maybe the terminology should be as follows:
I have been clinically diagnosed with Autism Spectrum Disorder
I am self diagnosed as Autism Spectrum Disorder
I am unofficially diagnosed by people who are expertly knowledgeable in the Autism Spectrum Disorder field.

That way there is no room for confusion or ambiguity.


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wozeree
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02 May 2014, 9:42 pm

KingdomOfRats wrote:
wozeree wrote:
KingdomOfRats wrote:
btbnnyr wrote:
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.

exactly,have explained this often on here and elsewhere, its below or beyond seventy that says whether someone is HFA or LFA, our inteligence
affects our basic functioning and presentation of autism but it doesnt automaticaly mean someone lacks smarts;or in the opposite direction; lacking social abilities and hygeine skills is not what LFA means either.

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, parents dont speak for those of us under the LFA spectrum;they may advocate but they arent our voice-they will never understand what its like to be us, they just know what its like to be a parent which is a very different view of autism.

carly is just one of many LFAs,who is to say her beliefs of her autism havent been flavoured by her parents attitudes? mine was a belief of self hatred for being a burden on everyone until had reached well into adulthood and had been pro cure up to that point;that belief was purely because had learned it from parents and those around self as well as society in general.


This really confuses me. My IQ is higher than yours, but you seem at least as smart as me - and often much wiser.

hi wozeree!
smarts and IQ are different beasts.
on the NHS/SS intelectual disability service user panel am on-every person has smarts,one lady for example has moderate downs but is very smart in horoscope type stuff to the point of being like savantism.

for self,it probably comes from having seen the adult world from toddler age,with mums alcoholism and the violence it triggered plus dads trigger happy physical abuse for all behaviors and impairments of mine, am a lot more open minded about the world in that sense.


Hi KoR :D

What I think is that whoever came up with this idea of IQ, really needs to rethink it. By their standards Ted Bundy was a genius and you have a low IQ. Makes no sense!



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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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.