Participate in a Study on Dissociation in Autism Spectrum Disorders

[Dissociation in ASD]

Hello! My name is Katherine. I'm an autistic adult and psychology student at the Georgia Institute of Technology. I've noticed that myself, many of my friends with autism, and many autistic individuals on social media report symptoms of dissociation. For example, many of us have experiences such as being unsure what we're feeling, feeling like our environment is unreal, being confused about who we are, or experiencing emotional stress as physiological stress. However, there's very little research on this topic. Working under Dr. Chris Stanzione, I've created a study to examine dissociative experiences in individuals with autism, and I would greatly appreciate if autistic adults here would be willing to consider participating and invite other autistic adults that they know to participate as well. Your responses will be completely anonymous.

The recruitment ad and survey link are below:

How do individuals on the autism spectrum experience dissociation, and what increases their risk of dissociation? Help us understand the link between autism and dissociation by participating in our study. You will fill out a survey which can be found at https://gatech.co1.qualtrics.com/jfe/form/SV_9SQdCfxfwmRP6tf and will take less than 45 minutes to complete. You will not be directly compensated for your participation, but results may improve our understanding of autism and lead to better treatment for the symptoms that autistic individuals report struggling with. To participate in this study, you must be 18+ years of age and diagnosed with or suspected to have an autism spectrum disorder. If you have any questions about this study, please message me here or contact me at [email protected] or contact Dr. Christopher Stanzione at [email protected].​

Please note that I did not write any of the individual measures being used in this study. They were chosen because they're our best options at this time, but I know that some of the instructions can be unclear. Keep in mind that you can skip any questions or parts of questions that you're unsure how to answer or would feel uncomfortable answering. You're also welcome to take breaks during the survey.

Thank you for your consideration!

 

[unreality]

Wow that was one looooong survey. I answered most of the pages but skipped the last half dozen pages. Sorry but that amount of questions was starting to upset me, giving me the impression that the real intent of the survey was to test peoples patience.

 

[Dissociation in ASD]

Wow that was one looooong survey. I answered most of the pages but skipped the last half dozen pages. Sorry but that amount of questions was starting to upset me, giving me the impression that the real intent of the survey was to test peoples patience.

Sorry about that! I know that different people have different tolerances for study lengths, and it was hard to balance including enough measures to capture all of the factors that we want to examine and the need to not tire out participants! That is one of the reasons that I wanted to make clear to people that they're welcome to skip any questions that they don't want to answer. What's most important for our analysis is that people complete the RAADS-R and the MID so that we can get an understanding of a possible relationship between autism and dissociation, and everything else is there to help us to understand what might cause or influence that relationship.

Thank you for your participation!

 

[Thinx]

Interesting research I have completed the questions and hope you get plenty of data. I like to think of dissociation as a skill...

 

[Dissociation in ASD]

Interesting research I have completed the questions and hope you get plenty of data. I like to think of dissociation as a skill...

Thank you for your participation! And yes, dissociation can absolutely be a helpful coping mechanism under the right circumstances and when not severe. One of the most interesting aspects of this research for me has been examining the open responses that people give and seeing how they view their dissociation. It can be disabling, but it also clearly helps some people to cope with an often very intense and confusing world. That's an aspect that I'd like to explore more at some point.

 

[SusanLR]

It's 3 am here now, but, will do it tomorrow.
This is interesting since I just had a discussion on dissociation with sensory overloads and meltdowns two days ago with my psychologist.

 

[WereBear]

Completed!

Made me think. Which I always enjoy!

 

[Larisa]

If I may point at some things that confused me in the questionaire
'I focus on details rather than the overall idea' - details matter to me, but after decades of sorting out the information in the society I learned to pick up the whole context (the details and the concept behind them) and I can tell that 'the overall idea' that contradicts 'the details' is mostly really bad and not thought-through idea.
The question about the food is rather strange because BOTH the consistency and the taste do matter to me, I can't (and never could) give up one of two.
The same applies to the clothes - I like what I wear and I won't wear what I don't like even if it feels comfortable.
I think in these two questions is the denial of my personal opinon about the taste of food and the look of the clothes - and that I have to agree food I find _tasty_ is not considered 'tasty' and the clothes I _like_ (including their appearance) is 'plain' or even 'ugly' by standarts of some authoritive figures - it really makes me experience dissociation right now.
'I am considered a compassionate type of person' - again: by whom? My close friends think so, other people would probably disagree.
It's all relatively: the society is not a perfect blend, there are different groups and individuals with their goals and interests and their resulting assessment of me based on them.

 

[Dissociation in ASD]

It's 3 am here now, but, will do it tomorrow.
This is interesting since I just had a discussion on dissociation with sensory overloads and meltdowns two days ago with my psychologist.

I hope that taking the survey goes well for you! I'm glad to hear that your psychologist is aware of and willing to discuss dissociation in autism. That's good, to know that this is on some clinicians' radars!

Completed!

Made me think. Which I always enjoy!

Thank you for your participation! I'm glad that you enjoyed the survey.

Hello
If I may name some things that confused me in the questionaire
'I focus on details rather than the overall idea' - details matter to me, but after decades of sotrting out the information in the society I learned to pick up the whole cotext (the details and the concept behind them) and I can tell that 'the overall idea' that contradicts 'the details' is mostly really bad and not thought-through idea.
Ite question about the food is rather strange because BOTH the consistance and the taste matter to me, I can't (and never could) give up one of two.
The same applies to the clothes - I like what I wear and I won't wear what I don't like even if it feels comfortable.
I think in these two questions is the denial of my personal opinon about the taste of food and the look of the clothes - and that I have to agree food I find _tasty_ is not considered 'tasty' and the clothes I _like_ (including their appearance) is 'plain' or even 'ugly' by standarts of some authoritive figures - it really weirds me out and makes me experience dissociation right now.

I have to admit, it never fails to amuse me that out of everything, it's always the autism screener that causes the most confusion and frustration. I agree that for something that's meant to explicitly be for autistic people, the RAADS-R really does drop the ball a bit on clarity and nuance.

 

[Larisa]

'When I'm upset I don't know if I am sad, frightened or angry'
It is implied that a person can only experience one emotion at time: OR sad, OR frightened OR angry. Why? It may be shift from one to another (depending on the situation) or several of them simultaneously.
For example: a collegue at work suddently snaps on me while we discussed our common work matters. I get confused, agitated and hurry away while thinking 'What happened? _I_ was perfectly logical (anger). But maybe I have missed some aspect? (fright). Not the first time I have (blaming myself, fear of repeating mistake)"
How should I describe my emotion to the outsider in that situation?
Think of it in the aspect of 'human feelings' and 'the tags in a human language': there is a human psyche and only after some milleniums humans started to name its most recognisable characteristics. Why such noticed characteristics should be mutually exclusive? They are noted at the peaks but the feelings are not discrete "peaks" of the psyche, they flow one into another between 'peaks'.
Ambivalence is considered a disturbing sign but it's perfectly natural to feel about things or people my relationships changed over the time (or the situation changed to make me reevalue my connection to them and their presence in my present).
For example: I sold the house my father started to build but never completed - I felt sadness about loosing a reminiscence about him AND I was greatly relieved and enjoyed to get rid of the costly possesion I couldn't afford to keep.

 

[the_tortoise]

I wish "can't understand the question/how to interpret the question" and "question requires two or more separate answers for each statement it contains" were both options....

And/or a comment box for any necessary explanations/qualifications (I know it could make it veeeeeery much harder to score, if you actually took the comment boxes into consideration....but maybe it would be worth it for accuracy?)

How are unanswered questions taken into account? How many unanswered questions before the survey input is inaccurate/unusable? (Started it and then abandoned the effort....not going to try again and finish if I will have so many unanswered questions that my survey data is useless.)

 

[Dissociation in ASD]

'When I'm upset I don't know if I am sad, frightened or angry'
It is implied that a person can only experience one emotion at time: OR sad, OR frightened OR angry. Why? It may be shift from one to another (depending on the situation) or several of them simultaneously.
For example: a collegue at work suddently snaps on me while we discussed our common work matters. I get confused, agitated and hurry away while thinking 'What happened? _I_ was perfectly logical (anger). But maybe I have missed some aspect? (fright). Not the first time I have (blaming myself, fear of repeating mistake)"
How should I describe my emotion to the outsider in that situation?
Think of it in the aspect of 'human feelings' and 'the tags in a human language': there is a human psyche and only after some milleniums humans started to name its most recognisable characteristics. Why such noticed characteristics should be mutually exclusive? They are noted at the peaks but the feelings are not discrete "peaks" of the psyche, they flow one into another between 'peaks'.
Ambivalence is considered a disturbing sign but it's perfectly natural to feel about things or people my relationships changed over the time (or the situation changed to make me reevalue my connection to them and their presence in my present).
For example: I sold the house my father started to build but never completed - I felt sadness about loosing a reminiscence about him AND I was greatly relieved and enjoyed to get rid of the costly possesion I couldn't afford to keep.

Technically, "or" is an operator which can be used to indicate one or a combination of choices. Not knowing if you're sad, frightened, or angry means that you don't know which, if any, of those feelings you're experiencing. It could mean that you're sad and not realizing it, but it could also mean that you're both sad and frightened and still can't tell if either of those emotions are in the mix. You could be sad, frightened, and angry and be unable to know for sure if you're feeling any of those emotions. In that case, you would know that you feel bad but be unable to work out the specifics of what kind of bad. What that question is really curious about is your ability to recognize and tease out your own emotions.

I wish "can't understand the question/how to interpret the question" and "question requires two or more separate answers for each statement it contains" were both options....

And/or a comment box for any necessary explanations/qualifications (I know it could make it veeeeeery much harder to score, if you actually took the comment boxes into consideration....but maybe it would be worth it for accuracy?)

How are unanswered questions taken into account? How many unanswered questions before the survey input is inaccurate/unusable? (Started it and then abandoned the effort....not going to try again and finish if I will have so many unanswered questions that my survey data is useless.)

I'm sorry that you're having trouble answering the questions! Unfortunately, yes, having comment boxes would make interpretation next to impossible. Because I didn't create any of the measures that we're using, I wouldn't know how to take qualifications into account when scoring the measures, and it's the scores that I need in order to see patterns across responses.

The most important aspects of the survey are the RAADS-R and MDI. If you made it through those, everything else that you answer is a bonus! The relationship between RAADS-R and MDI scores is how we're looking at our main question (rates and experiences of dissociation in ASD), and we're using the other measures to see how other factors (such as alexithymia or anxiety) influence that relationship.

If you did get through both the RAADS-R and MDI, please don't start again from the beginning unless you indicate in some way that I need to toss your old dataset to avoid duplicating your data. If you still have it open and can resume at whatever point you left off at, that's fine, and you can skip as many questions as you want! As for individual parts of questions, just do the best you can and skip whatever parts you really can't make heads or tails of, and I'll worry about if you've answered enough questions parts.

Do keep in mind that it's okay to give an imperfect answer. You can answer something in a way that feels technically untrue but is the best answer for you at this time, and that's perfectly fine.

 

[Larisa]

What that question is really curious about is your ability to recognize and tease out your own emotions.

I have been working with my psychologist for 11 years on that

 

[OlLiE]

I think the study is interesting, i have largely dissociated from my emotions and the environment around me, and enjoy being a logical process thinker. I embrace my own 'reality' which i consider superior to that of the here and now, instinct driven, cognitive dissociation and rationalisation thinkers. I interact with the world when i must and when i choose to, and build in enough time to recuperate from the frustration of having to tolerate and deal with inefficient and delusional people with little or no added value to justify their existence on earth.

I have accepted how i am and have found peace in accepting that my way of seeing and experiencing the world is no way inferior to 'normal' people and does not mean that i should be any less happy than others. I don't see how i am as a 'condition' and don't really want to see myself as a kind of 'test subject'. I am happy to potter on exactly the way i am . I'll think about filling in the questionnaire.

 

[Tom]

I am sorry, but I only do studies that offer free coffee and donuts.

 

[Dissociation in ASD]

View attachment 44963

I think the study is interesting, i have largely dissociated from my emotions and the environment around me, and enjoy being a logical process thinker. I embrace my own 'reality' which i consider superior to that of the here and now, instinct driven, cognitive dissociation and rationalisation thinkers. I interact with the world when i must and when i choose to, and build in enough time to recuperate from the frustration of having to tolerate and deal with inefficient and delusional people with little or no added value to justify their existence on earth.

I have accepted how i am and have found peace in accepting that my way of seeing and experiencing the world is no way inferior to 'normal' people and does not mean that i should be any less happy than others. I don't see how i am as a 'condition' and don't really want to see myself as a kind of 'test subject'. I am happy to potter on exactly the way i am . I'll think about filling in the questionnaire.

That's a valuable perspective! Part of looking at how dissociation is expressed in ASD includes looking at how it's experienced by the individual. As I said before, at the end of the study is an opportunity for participants to talk about how they view their dissociation, and quite a few people have expressed that dissociation is a helpful coping mechanism for them. The more people who express that view, the stronger a case I can make for it when talking about why dissociation might show up in ASD. Plus, it also justifies future research in that area with the end goal being to better understand how to differentiate between helpful and harmful manifestations of dissociation and how to utilize it for the better.

I am sorry, but I only do studies that offer free coffee and donuts.

My apologies, but I think that'd be a little hard to arrange!

 

[Butterfly88]

I'd take it but I also have PTSD so dissociation I have could be from that.

 

[onlything]

I'd take it but I also have PTSD so dissociation I have could be from that.

There's a possibility of checking the PTSD option so I'd say they're taking it into consideration.

 

[Butterfly88]

There's a possibility of checking the PTSD option so I'd say they're taking it into consideration.

Okay, thanks for the info.

 

[Dissociation in ASD]

I'd take it but I also have PTSD so dissociation I have could be from that.

There's a possibility of checking the PTSD option so I'd say they're taking it into consideration.

Yes, that's correct! Any autistic adult is welcome to participate. We want to know what factors make autistic adults more likely to dissociate and shape experiences of dissociation, and so a range of experiences, comorbid disorders, and risk factors is a good thing!