Recruiting Autistic Adults for Online Study on Sticky Thinking & Mental Health

[AvaTiger23]

Hello,

My name is Ava. Elliot Gavin Keenan and I are two autistic researchers and are recruiting autistic adults for our online survey study examining sticky or repetitive thinking, stimming (repetitive behaviors), and mental health in autistic adults. To participate, you must be age 18+, could be from anywhere in the world, and identify as autistic. This study was approved by UCLA North General IRB (IRB#22-000321).

This study is unfunded and ran entirely by two autistic researchers.

While there is no compensation for this study, we are hoping that results from this study will inform our understanding of the relationships between sticky thinking, stimming, and mental health outcomes in hopes of informing mental health therapies for conditions such as depression or anxiety.

Involvement includes two 30 minute online surveys that will be taken 2 weeks apart. To participate, please contact Elliot Gavin Keenan at [email protected] directly. If you have questions, you can also email Elliot or ask me.

Also, please share this if you have the capacity to! Much appreciated to everyone who wants to participate.

I have attached the link to the research study flyer if you would like to see it or share it. This is the link to the flyer: https://drive.google.com/file/d/1a03NdWUiBtLTOLqwl4ivYGCfyQL_XuZM/view?usp=sharing

Also, here's a link to the study information sheet: https://drive.google.com/file/d/1WmmYr9ehdCwTImgvoN5h5Fjo0R8N-No_/view?usp=sharing

Again, if you would like to participate or have questions, please email Elliot at [email protected]

So appreciative of any and all support on this project. If there are any questions, feel free to reach out to Elliot or DM me.

 

[Streetwise]

If you know any neurotypical researchers give them this message id participate in studies IF i knew researchers were going to regularly communicate on a forum but researchers regularly come once or twice then completely disappear,we get at least four or five requests every month yours has been the best example of info needed

 

[AvaTiger23]

I'm confused about what you're asking but I'm happy to answer any questions.

I have not disappeared because that's not the right way to deal with potential participants. Apologies, I have not used a forum in awhile.

 

[AvaTiger23]

I'm confused about what you're asking but I'm happy to answer any questions.

I have not disappeared because that's the right way to deal with potential participants. Apologies, I have not used a forum in awhile

If you know any neurotypical researchers give them this message id participate in studies IF i knew researchers were going to regularly communicate on a forum but researchers regularly come once or twice then completely disappear,we get at least four or five requests every month yours has been the best example of info needed

 

[AvaTiger23]

Also we'll taken about the neurotypical researchers that show up and then disappear. I actually have approached several about that and this reaffirms that they need to know this.

If you know any neurotypical researchers give them this message id participate in studies IF i knew researchers were going to regularly communicate on a forum but researchers regularly come once or twice then completely disappear,we get at least four or five requests every month yours has been the best example of info needed

 

[Streetwise]

Also we'll taken about the neurotypical researchers that show up and then disappear. I actually have approached several about that and this reaffirms that they need to know this.

Thats all i was asking for if youre not neurotypical its a message to be given to them

 

[AvaTiger23]

Got it and will do.

 

[Atrapa Almas]

As you probably know, the autism spectrum includes people who just have some autistic traits, people who dont need treatment or accomodations, people who has double excepcionality and have others conditions as being gifted, ADHD,.... And on top of that here you could also find psychopaths who are bored, depressive people, paranoids, forum trolls...

And just by saying "I consider myself Autist" you are including them in a study that will be used to define treatment on people who need help?

Really?

I am an engineer and I would not design a new way to build bridges under the experiences and ideas of anonimous people of a engineering forum who claim to have experience about bridges...

What if someone pass your contact to Autism Speaks so parents and co-workers can participate pretending to be Autists (with their best intentions of helping autists to be more normal)?

If you say that you are autists I may belive on you, but your boss must be NT ... or there is something missing here. This make no scientific sense.

Or you just need to publish something?

Im curious.

 

[AvaTiger23]

Part of the study design is a measure of autism characteristics or symptoms, so people who don't meet criteria at a certain threshold will be screened out during analysis. So, yes you're right. However, we cannot expect everyone to provide detailed documentation or be honest with that so we will determine who makes the cutoff afterwards. You're right that it is a weakness of an online study. But, usually in studies like this you screen for autism. That's what we're doing. Does that help answer your question?

As you probably know, the autism spectrum includes people who just have some autistic traits, people who dont need treatment or accomodations, people who has double excepcionality and have others conditions as being gifted, ADHD,.... And on top of that here you could also find psychopaths who are bored, depressive people, paranoids, forum trolls...

And just by saying "I consider myself Autist" you are including them in a study that will be used to define treatment on people who need help?

Really?

I am an engineer and I would not design a new way to build bridges under the experiences and ideas of anonimous people of a engineering forum who claim to have experience about bridges...

What if someone pass your contact to Autism Speaks so parents and co-workers can participate pretending to be Autists (with their best intentions of helping autists to be more normal)?

If you say that you are autists I may belive on you, but your boss must be NT ... or there is something missing here. This make no scientific sense.

Or you just need to publish something?

Im curious.

 

[AvaTiger23]

We are using validated measures during this study. They definitely aren't perfect and we already have a lot to say about it and it's flaws. But, this is the best way to do a study like this unless you are going to interview 200 people and have them get documentation which could be expensive.

Part of the study design is a measure of autism characteristics or symptoms, so people who don't meet criteria at a certain threshold will be screened out during analysis. So, yes you're right. However, we cannot expect everyone to provide detailed documentation or be honest with that so we will determine who makes the cutoff afterwards. You're right that it is a weakness of an online study. But, usually in studies like this you screen for autism. That's what we're doing. Does that help answer your question?

 

[Atrapa Almas]

So this is the best way, because a better way would be expensive. Rings a bell. The same happens when companys save money on maintenance, all is great untill some machine blows killing someone. No maintenance is the cheapest best way to do maintenance.

That logic necesary needs that the cost of the accidents are not included in the economical equation. So if you think that this way of doing your survey is good I guess that the cost for Autists that would take a bad treatment based on the cheap survey is not taked into account. They will have to firm some legal paper to become responsibles of the future consecuences of this cheapness.
Yes, you answered my question. Thanks.

If you disclosure a part of that filters you are going to apply to all those who will join the study, you could save a lot of time of many people who will participate just to be discarted.

Just if you want to consider that ethic part on your cheap study that will be used to thread people unethicaly.

As I dont need treatment I think I will pass.

 

[AvaTiger23]

This is also a correlational quantitative study examining the relationships between constructs. So, they'll be a lot of work to take this further following this. We might follow it up with more studies that do what you say.

We are using validated measures during this study. They definitely aren't perfect and we already have a lot to say about it and it's flaws. But, this is the best way to do a study like this unless you are going to interview 200 people and have them get documentation which could be expensive.

 

[Tom]

I'm definitely guilty of sticky thinking.

 

[Streetwise]

also a therapist could pay me instead of thinking they can use