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[Georgitta Joseph]

Hello everyone!
I am Georgitta Valiyamattam and I'm currently working as a Fulbright visiting researcher with Dr. Alan Beck and Dr. Marguerite O’Haire at Purdue University. As part of my Fulbright project, we are looking at the acceptability of various treatment options for autism spectrum disorder (ASD), among parents/caregivers of children with ASD, across ethnic groups in the US. The study involves a brief self-report online survey from parents/caregivers of children with ASD. Participants will also be entered into a drawing to win cash prizes.

The study has received IRB approval and we are looking forward to having as many parents/caregivers of children with ASD as possible, to participate in our study. Parents/caregivers must be above 18 yrs of age and have a child/children with ASD below 18yrs of age. The results of this study can provide important insights into understanding and improving treatment acceptability for ASD among multicultural population groups.

We look forward to having many of you participate in our study! We also hope that you will consider sharing this information so as to give others an opportunity to share their opinions and advance knowledge.

Please find below the link to participate in our study which also contains the information sheet for research participants. Please read the information sheet before you decide to proceed with the study. Please contact me at my email address [email protected] if you have any questions. Thanks in advance for your time and support in advancing autism research!

https://purdue.qualt0rics.com/jfe/form/SV_8IYCoF8M9mzifK5

 

[Ambi]

Just a word of advice - on this particular forum, you may want to also explain why your study is focused on what the parents/caregivers prefer rather than gleaning insights from what the individuals with Asperger's would themselves have preferred or found useful. I'm sure you've got reasons, but I think there would be a better response here if you explained that as well.

 

[Georgitta Joseph]

Hi, many thanks for your response! At this point we are focusing on parents/caregivers because for individuals below 18yrs of age, a parental consent would play an important role in enrolling the child/adolescent for a treatment procedure. However, we do place an equal value on the child/adolescent's opinion and assent and this aspect of treatment acceptability is something we will be focusing on in a subsequent study.

Please do feel free to ask for any further clarifications/ provide feedback!
Thanks!

 

[EstimatedProphet]

I answered the survey. Pretty straightforward stuff and took maybe 10 minutes.

Georgitta, I have a comment: I gave "wait and see" very negative ratings because 90 days is far too long and holding off on behavioral/animal therapy while tracking a baseline of behavior is unnecessary. Things don't change that fast. Were the proposal to track for 30-45 days, I'd have responded more positively.

I'm diagnosed with ASD as is my son, who is just shy of 4 years old. We are in the early stages of behavioral therapy and have also been tasked with tracking a baseline of meltdowns and repetitive behaviors [HIS meltdowns, not mine]. I'm really pleased with the results so far!

Also there's something about describing a treatment as "moderately cruel" that made me laugh out loud. "Don't worry, studies have shown this treatment is cruel, but only moderately so."

Good luck with your study.

 

[Georgitta Joseph]

Thanks so much for taking the survey and for your responses which did raise some very valid questions. When framing the wait and see period we went with 2 assumptions- first that a wait and see option of any duration is not recommended once autism is suspected or diagnosed which is the case assumed in this survey, and early intervention is the best; secondly though it is unadvisable parents and caregivers do use the wait and see method and the duration varies widely. Based on clinician feedback we put an approximate wait list period of 3 months. However, with the feedback we have received including your inputs, we are reconsidering specifying a time duration for the wait and see period (for both future studies and also the current study if possible considering the specifics of analyzing data validly).

Regarding the descriptions for treatment acceptability, we are using a standardized scale to achieve as valid results as possible from the research perspective. I do agree that all the options may not seem suitably framed as different people look at it from differing perspectives and this is one of the inherent limitations of social science research.

I am really happy that your son is progressing well and is benefitting from behavior therapy. There is absolutely no better thing than seeing a treatment working and progress being made, for both parents and clinicians and I'm so very happy for you!

Many thanks again for your response and for your insightful comments!

 

[EstimatedProphet]

Thanks so much for taking the survey and for your responses which did raise some very valid questions. When framing the wait and see period we went with 2 assumptions- first that a wait and see option of any duration is not recommended once autism is suspected or diagnosed which is the case assumed in this survey, and early intervention is the best; secondly though it is unadvisable parents and caregivers do use the wait and see method and the duration varies widely. Based on clinician feedback we put an approximate wait list period of 3 months. However, with the feedback we have received including your inputs, we are reconsidering specifying a time duration for the wait and see period (for both future studies and also the current study if possible considering the specifics of analyzing data validly).

Maybe you could change 90 days to "between three weeks and three months as advised and agreed to by the caregiver and parents" or some such.

Regarding the descriptions for treatment acceptability, we are using a standardized scale to achieve as valid results as possible from the research perspective. I do agree that all the options may not seem suitably framed as different people look at it from differing perspectives and this is one of the inherent limitations of social science research.

I was joking about that, but survey questions are tough (I'm in the research biz), and Lord knows people will define the same word differently.

Thanks for the kind words, and good luck with the survey.