Asperger's Research Study

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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!

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

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

Pretty much my reaction - so few bother.

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/).

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.

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.

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.

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.

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.