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Autistic Adult Research Study

C

CommunityAutismResearcher

New Member
Hi! My name is Samara and I am a PhD student at UCLA who does research in the autistic community to learn about their experiences and help represent their best interests in research.

We are looking for volunteers to take a survey about their experiences with research as an autistic adult as a part of a voluntary UCLA survey: Autistic Adults' Perceptions of Research

Contact us, Samara Wolpe, Ingrid Tien, and Dr. Jeffrey Wood, at [email protected].
 
To be clear. It is an online form that I have to fill in and not via online video chat or something right?
Just follow the link and fill in the form?
 
CommunityAutismResearcher said:
Hi! My name is Samara and I am a PhD student at UCLA who does research in the autistic community to learn about their experiences and help represent their best interests in research.
Click to expand...
You should realize that such surveys will skew ASD1.
ASD2s like my 35yo son are not interested in academic participation.
ASD3s like my almost 29yo daughter are oblivious to computers & the internet and are preliterate [a type of non-verbal].
 
Crossbreed said:
You should realize that such surveys will skew ASD1.
ASD2s like my 35yo son are not interested in academic participation.
ASD3s like my almost 29yo daughter are oblivious to computers & the internet and are preliterate [a type of non-verbal].
Click to expand...
From the information given I assumed the research was targeted towards adults who were diagnosed later in life.
We are looking for volunteers to take a survey about their experiences with research as an autistic adult
But I might have misunderstood. If it is true it would actually be better if it was filled in by people with ASD1.
If not, is there a way you think people with ASD 2 and 3 could participate in this survey? Or would it be better to point out in the study that it is skewed for ASD1?
 
I do not see a distinction between late diagnosis (which is almost always ASD1) or aged-out school-diagnosis (which would include 2s & 3s).
kenaij said:
Or would it be better to point out in the study that it is skewed for ASD1?
Click to expand...
As long as they realize that 2s & 3s will be severely underrepresented, this survey could help with issues like employment & continuing education (among 1s).
 
Crossbreed said:
I do not see a distinction between late diagnosis (which is almost always ASD1) or aged-out school-diagnosis (which would include 2s & 3s).

As long as they realize that 2s & 3s will be severely underrepresented, this survey could help with issues like employment & continuing education (among 1s).
Click to expand...
I originally did not understand your point correctly, but think I do now.
 
Crossbreed said:
You should realize that such surveys will skew ASD1.
ASD2s like my 35yo son are not interested in academic participation.
ASD3s like my almost 29yo daughter are oblivious to computers & the internet and are preliterate [a type of non-verbal].
Click to expand...
You bring up an excellent point, research methods like surveys are inherantly self-limiting. However, I use different methods (e.g. facilitated interviews) to work with individuals with differing verbal abilities and modes of communication.
 
kenaij said:
From the information given I assumed the research was targeted towards adults who were diagnosed later in life.
We are looking for volunteers to take a survey about their experiences with research as an autistic adult
But I might have misunderstood. If it is true it would actually be better if it was filled in by people with ASD1.
If not, is there a way you think people with ASD 2 and 3 could participate in this survey? Or would it be better to point out in the study that it is skewed for ASD1?
Click to expand...
Anyone who is an autistic adult (over the age of 18) is eligible to participate.
 
Crossbreed said:
I do not see a distinction between late diagnosis (which is almost always ASD1) or aged-out school-diagnosis (which would include 2s & 3s).

As long as they realize that 2s & 3s will be severely underrepresented, this survey could help with issues like employment & continuing education (among 1s).
Click to expand...
Anyone who is an autistic adult (over the age of 18) is eligible to participate. Late diagnosis and self-identification would be eligible as well.
 
Research on the research. Interesting. A good idea actually. I've been on autism forums about 12 years and believe we average about 2-3 a month. Though most are well intentioned I also think most are simply going to be read by a professor once and never actually used for anything. So really, in about 90% of the cases we are simply helping people mostly NT get their degree. End of story.

And only a handful, you could count on one hand of the 400-500 I've seen, at least offered a voucher for a coffee and donut. ;)
 
Tom said:
Research on the research. Interesting. A good idea actually. I've been on autism forums about 12 years and believe we average about 2-3 a month. Though most are well intentioned I also think most are simply going to be read by a professor once and never actually used for anything. So really, in about 90% of the cases we are simply helping people mostly NT get their degree. End of story.

And only a handful, you could count on one hand of the 400-500 I've seen, at least offered a voucher for a coffee and donut. ;)
Click to expand...
You make a great point. I wish I could take everyone who takes this survey out to lunch! Unfortunately, I'm just a grad student and we are underfunded :( I may be getting my degree as a NT, but I hope to use that degree to lend credibility to underrepresented voices of the autistic community. I also hope to use this study to help design future research according to the feedback we receive about what the autistic community wants to see from us.

P.S. Thanks for doing the survey anyway :)
 
welcome to af.png
 
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