Study about communication between researchers and volunteers with autism

[autism_research]

Hello all,

I hope it's ok if I post this here: I've designed a study which is supposed to look at the interaction between people on the spectrum and autism researchers and whether things can be improved. I am looking for volunteers to complete a short online questionnaire about the communication between individuals with autism spectrum disorders and professionals who investigate autism and how this affects the research that is conducted. Previous surveys have shown that many people on the autism spectrum are unhappy with the way autism is researched or even feel left out and ignored by professionals. I would like to know more about the underlying dynamics that cause this apparent ‘rift’ between researchers and individuals with autism and if it is as deep as has been suggested. To this end I am planning to ask professionals who work in the field of autism research as well as individuals with a diagnosis on the autism spectrum to fill in this short questionnaire.

If you are interested in taking part in the survey please click the following link:
http://surveymonkey....ersity_research

If you have any questions, concerns or would simply like to know more don't hesitate to ask!

Many thanks!

 

[Aspergirl4hire]

Who are you?

EDIT: Yes, I took the survey, and University of Cambridge is certainly credible. But it's a good idea to introduce yourself here, rather than rely on an anonymous link.

Also, this isn't a quick survey. A thoughtful response would have taken more time than listed, and people should look at what they know about autism research and organize their thoughts first about what they'd like to see changed, and why, to make this go quicker.

This survey--which measures communication about autism with autism researchers--could be important, but it would have taken me close to 45 minutes, and more likely an hour, to have included everything I wanted to say. Setting my expectation at an unrealistic 10 minutes, and not providing a link or any ID to actually ask questions, is very poor practice. At best, it's thoughtless. At worst, I feel it's disrespectful.

 

[SignOfLazarus]

autism_research
Rules For Research Surveys | AspiesCentral.com

...sorry I don't see how this follows the set structure [in the post], so confused. It would probably be better received if it did.

 

[AsheSkyler]

Whoever said this'll take ten minutes didn't pay attention. You can't ask questions like that and expect it to be done in ten minutes.

 

[autism_research]

Hi all and thank you for all your contributions!

Who are you?

EDIT: Yes, I took the survey, and University of Cambridge is certainly credible. But it's a good idea to introduce yourself here, rather than rely on an anonymous link.

I'm sorry about that. My contact details are on the first page of the survey, so I thought it would be obvious, but I will keep this in mind for the future. I'm a PhD student at the University of Cambridge and my main interest is sensorimotor processing, but when discussing research interests with my volunteers I felt that they were often dissatisfied with the way the research was conducted which prompted me to design this survey.

Also, this isn't a quick survey. A thoughtful response would have taken more time than listed, and people should look at what they know about autism research and organize their thoughts first about what they'd like to see changed, and why, to make this go quicker.

This survey--which measures communication about autism with autism researchers--could be important, but it would have taken me close to 45 minutes, and more likely an hour, to have included everything I wanted to say. Setting my expectation at an unrealistic 10 minutes, and not providing a link or any ID to actually ask questions, is very poor practice. At best, it's thoughtless. At worst, I feel it's disrespectful.

Yes, I have had similar feedback before, but it is actually quite difficult to gauge the scale of the survey. The basic design of the questionnaire has simple yes/no responses which should not take longer than 10 minutes to complete. However if you would like to add more information/thoughts/comments in the text box below each question I can see how it can take an hour at best! This is why the information text on the first page specifies that the text boxes are optional and that "you may however wish to spend longer and there will be room to add your own comments and thoughts on each of the question should you so wish." If you have any suggestions on how to improve the instructions please do let me know.
I'm sorry to have come across as thoughtless or disrespectful - that was by no means intended and I have actually consulted quite a few people (including volunteers witrth ASD) about the structure and outline of the survey before putting it online. My email address is also on the first page of the survey, so any concerns/questions can be addressed this way (or via the forum of course as has been done). I am not sure what other mode of communication you would have liked to see?

Best wishes,
Jo

 

[Aspergirl4hire]

Hello all,

I hope it's ok if I post this here: I've designed a study which is supposed to look at the interaction between people on the spectrum and autism researchers and whether things can be improved. I am looking for volunteers to complete a short online questionnaire about the communication between individuals with autism spectrum disorders and professionals who investigate autism and how this affects the research that is conducted. Previous surveys have shown that many people on the autism spectrum are unhappy with the way autism is researched or even feel left out and ignored by professionals. I would like to know more about the underlying dynamics that cause this apparent ‘rift’ between researchers and individuals with autism and if it is as deep as has been suggested. To this end I am planning to ask professionals who work in the field of autism research as well as individuals with a diagnosis on the autism spectrum to fill in this short questionnaire.

If you are interested in taking part in the survey please click the following link:
http://surveymonkey....ersity_research

If you have any questions, concerns or would simply like to know more don't hesitate to ask!

Many thanks!

Hi all and thank you for all your contributions!



I'm sorry about that. My contact details are on the first page of the survey, so I thought it would be obvious, but I will keep this in mind for the future. I'm a PhD student at the University of Cambridge and my main interest is sensorimotor processing, but when discussing research interests with my volunteers I felt that they were often dissatisfied with the way the research was conducted which prompted me to design this survey.


Yes, I have had similar feedback before, but it is actually quite difficult to gauge the scale of the survey. The basic design of the questionnaire has simple yes/no responses which should not take longer than 10 minutes to complete. However if you would like to add more information/thoughts/comments in the text box below each question I can see how it can take an hour at best! This is why the information text on the first page specifies that the text boxes are optional and that "you may however wish to spend longer and there will be room to add your own comments and thoughts on each of the question should you so wish." If you have any suggestions on how to improve the instructions please do let me know.
I'm sorry to have come across as thoughtless or disrespectful - that was by no means intended and I have actually consulted quite a few people (including volunteers witrth ASD) about the structure and outline of the survey before putting it online. My email address is also on the first page of the survey, so any concerns/questions can be addressed this way (or via the forum of course as has been done). I am not sure what other mode of communication you would have liked to see?

Best wishes,
Jo

Fair question. I'll answer.

1. I think it would have been appropriate to have posted a question about survey protocol to the board, as others have. I don't see the relevance of asking people who aren't part of this community how to do post a question. Hiding your email after the click isn't good enough if you're going to ask us to contact you before the click.
   
2. There's no reason for anyone to click an anonymous link to find out who you are--this behavior looks like click-baiting and is often used to get people to sites with malware.
   
3. If you understand aspies at all, it should be evident that we will go into detail. If you were depending on yes/no questions to be sufficient, that, I feel, was naive. I also found that a thoughtful consideration of your yes/no questions produced misleading answers, depending on what you were trying to get at. Others may feel differently about it. I find it very frustrating to have it assumed that all I'm going to do is click yes/no especially when there's something to explain and I'm wired to explain--and I'm a participant-observer, to boot.
   
4. Finally--a number of researchers come here. It's very obvious when a researcher is coming with a genuine interest--they show it in the opening post, by observing the courtesies of introducing themselves and explaining why this community might care. I did that favor for you. I'd like to observe that usually it's the aspie who doesn't observe the social conventions.
5. You asked on the forum, I chose to answer on the forum. As I emphasized earlier, we are a community. Not a pool of easy-to-access research subjects who really only matter as "subjects." I felt the approach was as anonymous as an ad and really presumed on people who need some kind of voice in research and who don't get it. The approach reinforced that impression and is startlingly at odds with the ostensible purpose of the research.

And that is the mode of communication I would have liked to see.

EDIT: I've posted a question to the moderators regarding the survey protocol guidelines. If you were able to just log in, join, and "hope it's OK" then perhaps we need some discussion on our side.

 

[autism_research]

Hi Aspergirl4hire & thanks for your detailed reply!

Fair question. I'll answer.
I think it would have been appropriate to have posted a question about survey protocol to the board, as others have. I don't see the relevance of asking people who aren't part of this community how to do post a question. Hiding your email after the click isn't good enough if you're going to ask us to contact you before the click.

I did in fact message the User "Brent" and sent him the above text to ask whether I could post this in the forum. He said it would be fine.
I'm not entirely sure what you mean by "click", so I'm sorry if I'm not following you 100% here, but do you mean that one cannot see my email address anymore after the first page of the survey? That is certainly a valid point and I will try and see if I can include it somewhere on the form. Yet I guess as this conversation shows there are usually multiple ways of getting in touch even if one forgets to note down the email address after the first click.

There's no reason for anyone to click an anonymous link to find out who you are--this behavior looks like click-baiting and is often used to get people to sites with malware.

Good point - I'll be honest I hadn't thought of that! Then again there is simply no good way of preventing this sort of behaviour. I could just as easily make up a name, "introduce myself" and still produce a spam post. Still, I take your point and I'll remember to introduce myself in the initial post in the future.

If you understand aspies at all, it should be evident that we will go into detail. If you were depending on yes/no questions to be sufficient, that, I feel, was naive. I also found that a thoughtful consideration of your yes/no questions produced misleading answers, depending on what you were trying to get at. Others may feel differently about it. I find it very frustrating to have it assumed that all I'm going to do is click yes/no especially when there's something to explain and I'm wired to explain--and I'm a participant-observer, to boot.

I share your frustration and I am aware that yes/no responses can risk being very superficial and do not provide a very in-depth view of what might be going on, but in discussion with some other researchers we agreed that this would be the best way to obtain some quantitative data for statistical analysis. I am also not making any asusmptions about how individuals respond to the questionnaire - I was merely trying to set it up in a minimalist design so as to encourage people to tick at least the yes/no boxes while providing the option of spending some more time to add comments and thoughts on relevant questions. Maybe I should have made it clear that this might then take longer than 10 minutes - I will see if I can change this.

I tried to phrase my questions in the most neutral way I could, but I admit that this can be difficult. Questionnaires - I feel - are often a very crude way of addressing a research question, but they are still the best tool we have to contact a large, dispersed and very diverse global community.

Finally--a number of researchers come here. It's very obvious when a researcher is coming with a genuine interest--they show it in the opening post, by observing the courtesies of introducing themselves and explaining why this community might care. I did that favor for you. I'd like to observe that usually it's the aspie who doesn't observe the social conventions.
You asked on the forum, I chose to answer on the forum. As I emphasized earlier, we are a community. Not a pool of easy-to-access research subjects who really only matter as "subjects." I felt the approach was as anonymous as an ad and really presumed on people who need some kind of voice in research and who don't get it. The approach reinforced that impression and is startlingly at odds with the ostensible purpose of the research.
And that is the mode of communication I would have liked to see.

Thank you for posting the link to the research survey rules. I actually tried to look for a post like this when I joined, but only found the forum guidelines and so simply messaged one of the moderators. I guess the main bit that was missing is the introduction in the first post which I appreciate is important. I do care about not offending or intruding on online communities, so please accept my apologies if I have done so. Of course most researchers will approach online communities with a view to recruite subjects, but this doesn't (shouldn't?) mean that they don't care and simply view members as easy, anonymous "guinea pigs". And it is my hope that in the end both parties can benefit from the experience and exchange.