Dissociation in Autism Spectrum Disorders Survey

Post Reply New Topic

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 htt ps://gatech.co1.qualtrics.co m/jfe/form/SV_9SQdCfxfwmRP6tf (note that the link has been "broken" in two places so that it will actually post) 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 (678) 778-9560 or [email protected] or contact Dr. Christopher Stanzione at (404) 894-2680 or [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 (including for the autism screening measure). 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.

Thank you for your consideration!

(Alex has approved me recruiting for this study here, and a mod has confirmed this)

Welcome, Katherine.

That sounds like an interesting study. I had no idea what my dissociative episodes even were until talked about at my autism diagnosis, and I'm fascinated about what the relationship is.

One question. Is the survey open to people outside the USA? The linked page doesn't mention any restriction, but I wasn't sure whether whether differing diagnostic criteria might be an issue, so I thought it best to ask first.

Hi! Thank you for the welcome.

Yes, this survey is open to any adult who has or suspects that they have an autism spectrum disorder! We're interested in the full range of experiences associated with autism, so we'd love a variety of responses.

Is there further explanation available for these symptoms inside or outside the survey?

The specifics of my ignorance...

Is this different from alexithymia? Just emotionally, in a tactile sense or something else?

Like being in a pseudo dream-like state? Feeling like it's unreal, but knowing otherwise or feeling and not knowing? or either one?

Like personality, gender identity or something else?

I'm curious on the distinction between these.

The study ends with an explanation of different types of dissociation and open ended questions about how you experience dissociation. If you have questions about dissociation after taking the survey (or if you have questions and don't want to participate in the study), you're welcome to PM me and ask! I don't want to give too much detail before you take the survey because I don't want to potentially bias how people answer the measures.

I will say that one of the things that we're looking at is if there's a clear difference between alexithymia and depersonalization (a specific type of dissociation which can involve difficulty recognizing and interpreting emotions) and if alexithymia predicts depersonalization and / or dissociation in general.
Additionally, yes, when I say "feeling like your environment is unreal," I'm referring to feeling like you're in a dream state or that your environment is staged or otherwise not as it should be. I am not using that phrase to indicate a delusional belief that the world is not real. It's the feeling in the absence of belief (or, more accurately, feeling with preserved reality testing) which indicates dissociation.
As for confusion about who one is, that can refer to many things! That's one of the points that I'll leave open to interpretation so as not to potentially bias answers.


I'll expand a bit more on this because I realize it might be a bit tricky to grasp. I'll start with a more extreme example. Some people get what are called psychogenic non-epileptic seizures, seizures which are not associated with epilepsy or other abnormal brain activity but instead are the result of extreme stress that the individual can't process or handle. The individual is not faking or choosing to have seizures; they're so upset that their brain is creating a seizure as a way of expressing that and drawing their attention to the fact that something important isn't being acknowledged. This is called a conversion symptom. Similarly extreme examples can include someone being unable to hear, see, or use a limb because of emotional distress. When the stress is processed, the symptom goes away. Less extreme but more common is emotional stress manifesting as somatic symptoms such as headaches, stomach pain, itchiness, or other physiological symptoms that can range from mild to severe. The mechanism behind this is a form of dissociation.

Sometimes, it can be hard to differentiate between actual physiological health symptoms and somatic or conversion symptoms. For this reason, the study contains a measure that asks about symptoms that are commonly dissociative, especially when found together, and does not ask whether these symptoms might have a physiological cause. This does mean that it will sometimes capture actual health symptoms, and that's ok! Because we're looking at trends and not individual data, what's important is that everything is reported as accurately as possible so that we can consider interpretations in a complete context.

I hope that this helps!

I lack the creativity to have dissociative episodes.

There are probably some autistic people who’ve had their creativity knocked out by those seeking utter conformity.

Thank you Katherine for the clarifications.

Dissociation isn't related to creativity. Absorption into fantasy often correlates with dissociation, but they seem to have different underlying mechanisms.

Also, to be clear, this study is open to any autistic adult regardless of whether or not you dissociate. What percentage of adults with autism dissociate is important information, which means that the reverse -- what percentage of autistic adults don't dissociate -- is just as meaningful.


You're welcome! Thank you for your interest!

Here's a direct link for anyone who's struggling to copy and edit the one from the top post:
Dissociation in Autism Spectrum Disorders Survey

Thanks

Thank you for posting the link!

The survey will be open for the remainder of the summer. If more people would be interested in participating, I would appreciate it!

Bumping again!

Did the study.

I like how it states in the preamble: "The psychological risks may include mild distress or boredom."

BTW, I didn't find it boring.

Thank you for your participation!

Haha, we're supposed to come up with a risk for every single study just to be sure that we're not missing anything. I'm glad that you found the study worthwhile!

Another bump! I'll probably keep bumping once a week in case new people might notice that way.