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AspergerStudy
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28 Nov 2022, 8:35 pm

Hello WrongPlanet group members,

My name is Stephanie Soukar and I am a medical student working on a research project that looks at how people write about Asperger’s syndrome in online forums since its removal from the DSM-5 and how they feel about this change. We want to read old forum posts to see what the conversation has been like on WrongPlanet since the change. I am working with Professor Ariel Cascio, who does research on autistic identity and neurodiversity (you can find this research here: https://arielcascio.wordpress.com/archives/ ). We wanted to announce our presence on this forum as we look for information that could help us answer our research question, so that you’ll know that we are here and we aren’t just “lurking” without introducing ourselves.

Please feel free to reply with any questions or thoughts you may have about this study. Advice on any particular discussion threads that address this topic are also welcome.

Thank you!



Last edited by Cornflake on 29 Nov 2022, 5:36 am, edited 1 time in total.: Added a URL

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28 Nov 2022, 8:42 pm

I have seen research projects posted before and they are frowned upon unless approved by Admin.

You should either post in the Moderator Attention thread asking for permission HERE

Or contact the Admin Cornflake via PM HERE

Good Luck :D


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29 Nov 2022, 5:38 am

^ Already done - Stephanie is one of the very rare researchers who ask first. :thumright:


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29 Nov 2022, 9:11 am

Cornflake wrote:
^ Already done - Stephanie is one of the very rare researchers who ask first. :thumright:



Image


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Don't be so eager to be offended. The narcissism of small differences leads to the most boring kind of conformity.


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29 Nov 2022, 11:07 am

:lol: Pretty much my reaction - so few bother.


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29 Nov 2022, 2:23 pm

AspergerStudy, I hope you will tell us (perhaps in this thread?) when your study is over and what you found (either with a summary here or steer us to it on https://arielcascio.wordpress.com/archives/).


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30 Nov 2022, 12:19 pm

Stephanie Soukar and Ariel Cascio. Welcome to the site and as far as I am concerned, this is an open online site and free to both Aspies and non-Aspies alike.

In my personal opinion, Asperger's Syndrome is a unique personality type and lumping it together with other groups will lose the ability to understand HOW ASPIES CAME TO BECOME ASPIES. Humans are much more complex than anything that has ever existed on this planet and probably almost anywhere else in the universe. We have multiple brains structured within ourselves. Jill Bolte Taylor in her book Whole Brain Living has come the closest in defining the construct of the human brain but she has not yet understood that Asperger's Syndrome is the same as Aphasia.


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AspergerStudy
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06 Dec 2022, 2:14 pm

Thank you everyone!

Yes, we are happy to post the results in this thread and will post them on the wordpress too.

You might also be interested in a research poster we published on a literature review we did on this topic. We can't post links yet, but if you scroll down the page linked in our first post, it's the poster with the first author named Bharadwaj.



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06 Dec 2022, 2:30 pm

I am actually grateful that I was diagnosed in 2014 after the removal from the DSM. The reason is that everyone assumes that I am much higher functioning than I actually am because of my physical appearance and my ability to speak and do ADLS. What people don't realize is that severity can take many different forms and there are areas that I am extremely and debilitatingly severe in that people can't obviously see. No one actually sees me when I am struggling because I cannot be around people when I am. So no one realizes how severely I struggle in certain areas. In fact, four out of the six areas that are tested for Autism severity, I tested in the highest severity categories. It's just that the two areas that people can actually visibly see, I tested less severe. So everyone automatically assumes that I have Asperger's and when I ask for help and services and accommodations that I need to survive, I often get told that I am too high functioning because I only have Asperger's. But even if they look at my actual diagnostic report, they still deny me because they say, I look like I only have Asperger's. So I can't get the help I need. But now that people don't use Asperger's anymore, it will be more likely that people who fall in the category that I fall into, might hopefully have an easier time getting the help and support that they need.


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08 Dec 2022, 9:53 am

Personally, I find the terms aspie or Aspergers highly offensive since Hans Asperger was a Nazi who murdered Autistic people if they weren’t ‘high functioning’ enough. Same goes for functioning labels. In my 30 years teaching experience working with thousands of Autistic young people in the uk, we prefer identity first language and nobody refers to themselves by the outdated term Aspergers anymore, nor is our brain type a syndrome or disorder and we are disabled by society designed for neurotypicals. I understand that years ago the older generation drew comfort from receiving a diagnosis of Aspergers that may have enabled them to access support or gain understanding and ownership of their difference so for them it may be hard to start calling themselves Autistic but once people are educated as regards the origin of the term, most would rather not name themselves after a Nazi that tried to erase us.



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10 Dec 2022, 8:39 am

I'd rather resist current Nazis than worry about cancelling old ones. I'm just glad that we have had a fairly well-known name, and think it is absurd to try to re-train everybody. I also don't care much about the DSM. It is more like a chronicle of fashion than hard fact. An accurate diagnosis for most people would have percentages of various disorders, but usually simple minds are trying to decide which one is 100%. A completely ignored factor in any evaluation is the basic predisposition to xenophobia, sexuality, IQ, EQ, and other factors strongly influenced by genetics that affect the expression of disorders. The worst therapist I ever had was trying to memorize her lessons, and the best was barely trained - I call her work remedial parenting.



AspergerStudy
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05 Feb 2024, 5:25 pm

Hello WrongPlanet group members,
This is Ariel Cascio. I am taking over from Stephanie because Stephanie graduated. Congratulations to Stephanie! I am writing to give you an update on the project. We wrote a paper and plan to submit it to a journal. We cannot share the full paper in public until a journal publishes it, but we wanted to share with you what we found and what we plan to say about it. We can share the draft in private. If you want to read it, please email me at [email protected].
We found 31 threads about the DSM-5 removing Asperger’s syndrome. We compared them to three ideas that social scientists have proposed to explain what happens when a diagnosis “disappears.” Here are the ideas and some quotes that we think match them.
The first idea is that Asperger’s could be “transient.” This means that doctors only make a diagnosis at certain times in history because of bigger social issues. Later, people stop talking about that diagnosis. We wanted to know if users talked about Asperger’s as outdated. Some posts we think fit this idea said that there is a lack of “fixed boundaries” between Asperger’s and autism and that Asperger's existed "so that parents would consent to getting their children an ASD diagnosis” because there was less stigma with Asperger’s than with ASD.
The second idea we used is that Asperger’s could be a “diagnosis you have to fight to get.” This means that people try to get diagnoses that are hard to get. We wanted to know if users talked about worry that they will lose services if they do not have an Asperger’s diagnosis. Some posts we think fit this idea said that the DSM-5 change is like being told “part of their identity no longer existed” and that without it they are “barely eligible for services.” One post said “Aspergers was removed because it was felt that it was being overdiagnosed” and insurance did not want to pay.
The third idea we used is called “demedicalization.” This means that something that used to be a medical label no longer is. We wanted to know if posters still talked about Asperger’s, but not as a medical diagnosis. Some posts that we think fit this idea said, “screw the DSM”, “I mean, it's not true unless it's on paper, right? People suck,” and “call yourself whatever you like.”
We also know that some people do not like to use names related to Nazi scientists. We wanted to know if posters do not like using the name Asperger’s because Hans Asperger helped the Nazi party. We found many ideas about it on Wrongplanet. Some posts said the name was OK because Asperger was the “First Autism Advocate” who tried to save autistic children from the Nazis. Some posters said they “eliminated my Aspie identity when the proof came in [about what Asperger did].” Posts described it as “a time of shock, the pain of unwanted change” when they learned about it. Some posters said that the community has claimed the term, so that Asperger’s means “belonging to a group” and “in no way makes me think of some dusty old man.”
We found posts that fit with all four ideas. We conclude that Asperger’s is not “transient” because WrongPlanet posts still talk about it. We show that there are both posts that talk about it as a diagnosis you have to fight to get AND posts that talk about it as an identity that does not need a diagnosis. We argue that WrongPlanet is an example of a place where both ideas co-exist. These points are important because there were a lot of papers published about the change before it happened, but very few after. We hope we can publish our paper to show how people still talk about Asperger’s. We hope our paper will help doctors, teachers, and policymakers learn about this complex issue.
We would love to hear what you think.
Thank you!
Ariel



What_in_the_what_now
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05 Feb 2024, 7:49 pm

Is there some proof you are who you say you are?

A medical student indicates an undergraduate I dont like the idea of exploiting



AspergerStudy
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06 Feb 2024, 8:25 am

I'm happy to provide whatever proof might work. I suppose the easiest way might be if you email me at [email protected], I could reply to confirm that I'm really the same person posting here. Would that help? And/or if mods have any other verification procedures, I'm happy to go through them, just let me know.
Thank you,
Ariel



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06 Feb 2024, 8:48 am

Since you probably read my opinions elsewhere I won’t repeat them here.

I would add one should look at a number of Autistic spaces. Wrong Planet has a mostly live and let live attitude about the usage of “Aspergers” and “Aspie”.

X on the other hand has a mostly hostile towards the usage of those words.

Things change over time even in the same space. I joined this forum in 2013 when Aspegers ceased to be a medical diagnosis. Members at that time were adamant about keeping those names. From 2014-2016 it was a highly contentious issue with members feeling strongly for and against.


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06 Feb 2024, 12:54 pm

Last night we finished watching our way through Doctor Who season 12.

It starts with "Spyfall: Part One"




and finishes on "The Timeless Children"



What can I say?
Jodie Whittaker is a wonderful Doctor
○ All of her episodes I've seen so far, perhaps especially this season, are wonderful
○ And I really like the new Doctor Who theme music:


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