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older and elderly autistic adults

NAS49652
over 5 years ago

I'm a researcher but also a parent of two autistic adults.  I'm conducting a research study as part of my post-graduate degree focusing on older and elderly autistic adults, in particular the support they receive once they reach retirement age; where they are living; who's advocating for them; and just how safe are they.  I'm interested in hearing families' views and experiences and if anyone is happy to share this information with me please reply to this post.  Thank you.  

Parents
  • over 5 years ago

    I have two comments:

    1). To who posted this thread. I think for research studies, it would be *necessary* to post the information of the principal investigator/lab, name of university, the research ethics code, and contact info of the researcher when asked. This is how we know that the research is genuine. Many university psychology studies have a system called SONA where people can sign up for posted studies, and all the information mentioned above will be on there. If you look at www.callforparticipants.com you will see that each experiment will say the university hosting it as well as it's ethics approval information. I can understand starting the thread as an unofficial way to see who is interested, but there is no reason not to give this information when asked, that just seems a bit dodgy. 

    2). To people who have commented that this is a violation of the rules. If the question was posted as "I'm interested in hearing more about the experiences of autistic adults here, in particular what support do you receive once you reach retirement age, where are you living, if you have someone advocating for you, or anyone in your family taking care if you" - basically without the first two sentences saying that "I'm a researcher", then there will be no one saying that they are breaking the rules. How come that first sentence makes so much of a difference?

Reply
  • over 5 years ago

    I have two comments:

    1). To who posted this thread. I think for research studies, it would be *necessary* to post the information of the principal investigator/lab, name of university, the research ethics code, and contact info of the researcher when asked. This is how we know that the research is genuine. Many university psychology studies have a system called SONA where people can sign up for posted studies, and all the information mentioned above will be on there. If you look at www.callforparticipants.com you will see that each experiment will say the university hosting it as well as it's ethics approval information. I can understand starting the thread as an unofficial way to see who is interested, but there is no reason not to give this information when asked, that just seems a bit dodgy. 

    2). To people who have commented that this is a violation of the rules. If the question was posted as "I'm interested in hearing more about the experiences of autistic adults here, in particular what support do you receive once you reach retirement age, where are you living, if you have someone advocating for you, or anyone in your family taking care if you" - basically without the first two sentences saying that "I'm a researcher", then there will be no one saying that they are breaking the rules. How come that first sentence makes so much of a difference?

Children
  • over 5 years ago in reply to qwerty

    The sentence about being a researcher is irrelevant to me, take that out and it is still asking for experiences without any information or validation for the request. 

  • over 5 years ago in reply to qwerty

    yes a very autistic and legalistic exact reply.

    At least all avenues get considered on a blog like this!

  • over 5 years ago in reply to qwerty
    Martian Tom said:
    I think this post would probably fall under Rule 8 of our Community Rules
    Martian Tom said:
    Someone else may be able to clarify the Rule.

    The post didn't start like that, though.  I saw the words 'researcher' and 'research', posted by someone anonymously and with no other information.  Maybe it was jumping the gun - my focusing on the details rather than the broader picture, if you like - but stuff like this has been posted before.  The other thing is, it was posted 4 months ago with no further input from the OP.  Maybe that was because there were no replies, of course.  Maybe, too, if the mods had considered it a violation of the rules then, they would have deleted it - in which case, perhaps it isn't a violation.  

    NAS49652 said:
    i’m sorry I ever posted here, it was never my intention cause any upset, it was merely a post to gage an interest nothing more.

    As far as I'm concerned, you haven't caused any upset.  I was just pointing something out, that's all.  I say again - I think this is very worthwhile research, and I'd be interested in contributing, too.  Some of the other replies may already have given you an indication of general experiences.