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

Acedia
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01 May 2014, 5:11 pm

Two questions.

Do you feel that self-diagnosed auties and aspies dictate this forum??
And are there pervasive narratives that dominate on this forum?

It seems they have the most pervasive influence on this forum, and dictate the direction of it. If someone disagrees with them, or has a somewhat critical view of self-diagnosis, then it always causes a huge furore. On here there seem to be tacit narratives you just have to accept -

*All self-diagnoses are correct
*Autism Speaks is a terrible organisation
*Parents of LFA people are speaking on behalf of spectrumites and are taking away their voice

The above are obviously broad and simplistic, but you get the gist. I don't think I'm a particularly controversial poster, but I dissent from these narratives, well mostly; not a fan of Autism Speaks.

I'm expecting a high no vote. And the usual replies of psychiatry being fallible.



starkid
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01 May 2014, 5:47 pm

Two different questions but we're only allowed one answer.


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Acedia
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01 May 2014, 5:56 pm

starkid wrote:
Two different questions but we're only allowed one answer.


:) You're right, you can post your second and different answer.



Callista
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01 May 2014, 6:28 pm

Who was it... Simon Baron-Cohen?--somebody like that, essentially said that about 90% of autism self-diagnoses are correct. I tend to agree: Not all, but most, are correct.

I have on occasion seen someone come here and I did not think they had autism. For example, they're nerdy NTs who can socialize fine and don't get stuck on one activity. Or they're people with social anxiety and OCD. When I told those people that those weren't autistic traits they were describing, nobody jumped down my throat about it. So, no, I don't think you have to accept that all self-diagnoses are valid. I think you do have to accept that some are, and you have to treat self-diagnosed people with respect. Think logically here: What happens when someone with autism can't get services? They can't get a diagnosis. They have to do the best they can with what they have. That means doing their own research. If we could all get services without having to worry about stigma, there'd be no self-diagnosed autistics. That there are, says much more about the resources we have available than about any particular desire to be self-diagnosed.

Autism Speaks IS a terrible organization. That doesn't mean that everyone who works for them is a terrible person. However, they have done a lot to hurt us--both children and adults, mild and severe. They've presented autism as a tragedy, a threat, and a foreign invasion that's worse than cancer and AIDS and dying in a car accident. They've legitimized the murder of children with disabilities. But if someone were to come here and say, Hey, they're actually okay--yeah, I'd tell them I think they're wrong and that Autism Speaks is a terrible excuse for an autism charity. But it's not some kind of litmus test for staying.

The parents of LFA children are just as much a part of the autism community as the parents of HFA children. Perhaps more so, considering that many severely disabled autistic kids are non-verbal and can't type and so their parents, and others who read their behavior, are the only representatives they have. That's how I see parents of non-verbal children: I see them as representatives for their children, people who are here because they want to learn and because they want to share experiences. I do not see them as the core of the autism community, because they are not: Their children, and the HFA children, and the autistic adults, are. (As are all the people who've been labeled HFA and LFA at various times, and people who can't be categorized.)

Do we want to include family members? Heck yeah. They're interpreters. They fight for us when we're young and vulnerable and can't navigate the system for ourselves. But the point of it all is to secure respect and equality for autistic people--and when parents want that, they're great allies. Allies are the people who, when we speak for ourselves, will hold up a megaphone so that people can hear us--and that's whether we speak by biting a hated therapist or by writing eloquent essays. Or both. Lord knows there have been some therapists I wish I could've bitten.


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01 May 2014, 6:40 pm

Beautifully said Callista.


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skibum
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01 May 2014, 6:42 pm

And to answer both of your questions Acedia, I would have to say no to both. I don't think either one of those things are true.

As far as your short list.

1. As members of this forum it is not our place to judge whether or not someone's diagnosis is correct no matter how that diagnosis came about. We are here to support one another and that is all. None of us is qualified to judge another's diagnosis here on WP. And most people who come to a conclusion of a self diagnosis have done so after months and even years of research and looking into it. So with the limited knowledge of what we know about each other here we cannot decide that sort of thing for each other. We can answer specific questions and state our opinions based on what people tell us about themselves but that is all we can do.

2. As far as the narratives, don't know what you mean but I have not noticed what I think you have noticed.

3. As Callista stated so well, some parents, hopefully most, are advocates. Some parents are not so wonderful. But a blanket statement like that is not merited here.


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Last edited by skibum on 01 May 2014, 8:19 pm, edited 1 time in total.

Acedia
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01 May 2014, 7:04 pm

Callista wrote:
Who was it... Simon Baron-Cohen?--somebody like that, essentially said that about 90% of autism self-diagnoses are correct.


You agree with professionals when they say things you like - he also hypothesised the extreme male brain theory which is fairly unpopular on this board. Isn't that confirmation bias?

Also Francesca Happe and Uta Frith have questioned the usefulness of the Autism Spectrum Quotient he devised.

Quote:
In 2001 he developed the Autism Spectrum Quotient, a set of fifty questions that can be used to help determine whether or not an adult exhibits symptoms of autism.[15] Neuroscientist Francesca Happé questions whether the questionnaires produce objective enough results to be useful, as they rely on the subject's self-evaluation rather than independent observations.[14] Psychologist Uta Frith agrees, and notes that "rigorous studies are still missing".


http://en.wikipedia.org/wiki/Simon_Baro ... m_research

Quote:
Think logically here: What happens when someone with autism can't get services? They can't get a diagnosis.


Look how uneven the distribution of autism in the U.S is. Clearly there is a bias in the kind of person who seeks a diagnosis. I agree that psychiatry has to improve to ensure those who are being missed are diagnosed. But this is a fault of how flawed the entire system is.

Quote:
I do not see them as the core of the autism community, because they are not: Their children, and the HFA children, and the autistic adults, are. (As are all the people who've been labeled HFA and LFA at various times, and people who can't be categorized.)


Also we aren't a collective, as you can see we disagree. So there is no solidarity. How do we represent their voice any more than the parents? And the LFA presence on here is small.

---



Acedia
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01 May 2014, 7:12 pm

skibum wrote:
And to answer both of your questions Acedia, I would have to say no to both. I don't think either one of those things are true.

We can answer specific questions and state our opinions based on what people tell us about themselves but that is all we can do.


It's those opinions that rile people. And I'm not saying people shouldn't enquire or seek support. But that we are allowed to disagree without causing so much upset. That's all.



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01 May 2014, 7:58 pm

Dude, this is a remarkably hostile and aggressively argumentative question/poll.


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KingdomOfRats
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01 May 2014, 8:22 pm

1401b wrote:
Dude, this is a remarkably hostile and aggressively argumentative question/poll.

am getting that feeling as well 1401b.

Quote:
Also we aren't a collective, as you can see we disagree. So there is no solidarity. How do we represent their voice any more than the parents? And the LFA presence on here is small.

am the only LFA on here, but that doesnt mean parents shoud represent what we want,there are quite a few LFAs who attend self advocacy groups so am not the only LFA adult who campaigns for our own voice.
have rarely known a parent accept many of us are not like their young still developing child and they think they have the right to abuse and nastily judge us, have a look in the parents of severely autistic kids thread on the parents forum, see the replies to mine from one parent;she was privately asked to apologise by mods but carried on and she ended up triggering severe challenging behavior of mine-which caused a needed day out the next day to be cancelled due to risk assessment.

am all for both aspies and parents trying to understand and advocate for us as long as they stop basing how we live on how they think they woud feel in the same situation as we have very different mental capacities,social understanding, views, demands,overall understanding,and interests etc.


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skibum
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01 May 2014, 8:24 pm

What are you really upset about? I have a feeling there is something else you are feeling with which you are driving this thread. Are you angry or upset about something specific?


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Acedia
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01 May 2014, 8:56 pm

skibum wrote:
What are you really upset about? I have a feeling there is something else you are feeling with which you are driving this thread. Are you angry or upset about something specific?


No, my posting history has been filled with such questions. I'm exploring this question because I feel that there is a pervasive narrative that governs this forum, or particularly the main boards. I haven't voted in this thread, but I see two yes votes, and interestingly I don't see any concurrent replies.

I'm wondering if this scares away people who might want to contribute, but don't. We always talk about making this an hospitable place, but it seems to flow in one direction. I rarely see much dissenting views, except in the politics board, which is unrelated to autism, but there are people who stay out of there because they don't like it. Same with Love and Dating - I have mocked that board a bit, but the controversial opinions don't actually bother me, even if I don't agree with them.



Last edited by Acedia on 01 May 2014, 8:59 pm, edited 1 time in total.

daydreamer84
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01 May 2014, 8:58 pm

I think those are the politically correct stances (and yes, I definitely believe there is a such thing as PC) on this forum and yes, I think those opinions dominate here.

As for the parents of kids with LFA and individuals thus afflicted, there are some people with LFA, including the famous Carly Fleischmann, who have expressed the view that they want to be cured and would try a cure if it came along. Then there are parents of children who currently have no means to communicate and must be advocates for their children. Some of these parents are in favour of a cure for their children or at-least a partial cure, they'd like their children to be able to communicate and connect with them. These views are under-represented and sometimes suppressed on this forum.

Quote form Carly:
"If I could tell people one thing about autism it would be that I don’t want to be this way….”

linkCarly

*Of course there are many people with ASD who can communicate and are against a cure, including those with LFA and I think if such a cure came along it would create ethical issues and I don't believe anyone should be forced into taking a cure , for example. I do think the other side of this issue is suppressed on the forum but my view on this particular one is more nuanced, not either extreme.



Last edited by daydreamer84 on 01 May 2014, 9:21 pm, edited 2 times in total.

Lumi
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01 May 2014, 9:07 pm

No comment


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daydreamer84
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01 May 2014, 9:12 pm

skibum wrote:
1. As members of this forum it is not our place to judge whether or not someone's diagnosis is correct no matter how that diagnosis came about. We are here to support one another and that is all. None of us is qualified to judge another's diagnosis here on WP.


I don't agree with people saying to a member here "you don't have ASD" unless a member has asked for an opinion on their personal case. However, it is fair to question the practice of self-diagnosis and to discuss that practice in a general way. This is not just an emotional support forum but a discussion forum about ASD. People claiming to have the disorder without a professional diagnosis is an issue related to ASD. I do think threads about self-diagnosis get locked or disappear too quickly, when people start having a heated argument and get upset but no rules appear to have been broken.