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During 2012, did you take part in ASD research at a London university?

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[Note to moderator: I am a NAS member with AS seeking accounts from my fellow participants about a past/historic event. I've removed all references to identities of researchers and institutions. To be libellous, a statement must be both damaging and UNTRUE; so long as answers to this post from fellow participants are TRUE, they won't be libellous.]

In Summer 2012, a study was held at some premises of a northern London university. First, the study asked each participant (guided by the study’s Assistant) to provide First Aid to a mannequin which represented an imaginary casualty in a fantasy road accident. Later on, each participant was interviewed by the Principal Investigator about the First Aid given. In this post, I’ll call the study by the acronym LES.

I was one of the participants in the LES study. If you were also a participant in it, I’d like to know your answers to the few questions below - please number your answers correspondingly. From your answers, I hope to gain a sense of how my experience in the study was or wasn’t typical.

1. If choosing to take part in the LES study, participants were required to be interviewed later in the day about doing the First Aid task. Did you agree for the interview with you, furthermore, to be video-recorded? Yes/No

If yes, in how many research studies did you agree for that video to be used? 1 / 2 / 3+

2. If you agreed for the video to be used by only 1 study, was that only by the LES study (during which it was recorded) or only by a different planned study? LES study / planned study

3. Were you given a copy of the LES study’s Consent Form to take home with you? Yes/No

4. The room in which you did the First Aid task was located away from the main research laboratory/offices. On the outward journey, how many minutes were taken by you and the Assistant to get to it?

5. Between being interviewed (about doing the First Aid task) and your departure from the university, did anyone tell you surprising information about the First Aid task or about the room where you did it? Yes/No

If yes, what was the surprising information told to you?

6. The LES study’s Consent Form very briefly mentioned a different planned study by the same Principal Investigator. Have you ever been contacted since about that planned study? Yes/No

If yes, what were you told or asked about it?

7. Were you contacted later in the year 2012 by the LES study’s Assistant (whom had guided you in the First Aid task), asking if the videoed interview with you could be re-used in a new study of her own? Yes/No

If yes, did you agree or not agree to her request and what were your reasons?

8. At the end of the year 2012, the LES study’s Principal Investigator held (at the same university), a study which required participants to watch a video drama clip which depicted a mother supervising her adult daughter embarking upon a train journey; in the drama, next the mother hired a decoy taxi. Did you take part in this study? Yes/No

 

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  • Well the abstract and introduction plunge straight into a rather hectic description without any background or context - doesn't give much opportunity to feel confident the researcher is adequately trained academically. 

    It would appear there have only been two previous studies of this sort, and those were passive observation by children, but that doesn't emerge until page 4. Nor is it immediately obvious until after that point that this is about recall. The research is addressing whether activities participated in are better recalled the activities passively observed. So we are into the murky depths of empathy and understanding what others think (self and other).

    There seems to be a current obsession with empathy and memory, but somewhere there needs to be an explanation why this is necessary or productive. Is memory connected to the causes? The explanation starts about page 6. There follows a discussion of different sorts of tests, not unlike the triangles on a recent TV documentary on autism. Countless tests have been undertaken to understand the empathic thinking process.../.but Why?

    Lovely line on page 9 "the purpose of the present study is to extend this to-date inconsistent work on monitoring the source of actions and the self-enactment effect in autism using a live eyewitness scenario". OK so this is ground breaking research, but to what end?

    To discussants on the NAS forum, to what extent do you feel that you have trouble with your "source of actions" and your "self-enactment effect"? Do you fell this would help you understand autism?

    Herewith at page 11, when I'm hardly grasping the point, we come to method. Eighteen diagnosed ASD participants (16 male) were compared to 18 (15 male) recruited through newspaper adverts, who did the AQ test and proved non-autistic. Why 18 of each is not explained.

    Each had to go into an accident treatment environment with a manikin kitted out as an accident victim, read the instructions and do the checks prescribed, like checking pockets. Why would this be a normal scenario for people with no background in it - most would likely be apprehensive - what exactly does performing this prove?

    Page 12 reveals they wdere videoed through a two way mirror. Were they told they were being videoed? Was that part of the consent? We don't know.

    They then did distraction tasks for an hour before being interviewed, to see what they recalled. The paper then discusses and analyses.

    For research at Royal Holloway and City University London, I'd expect to see a better written paper.

    But the fundamental problem is why this is being done.

Reply

  • Well the abstract and introduction plunge straight into a rather hectic description without any background or context - doesn't give much opportunity to feel confident the researcher is adequately trained academically. 

    It would appear there have only been two previous studies of this sort, and those were passive observation by children, but that doesn't emerge until page 4. Nor is it immediately obvious until after that point that this is about recall. The research is addressing whether activities participated in are better recalled the activities passively observed. So we are into the murky depths of empathy and understanding what others think (self and other).

    There seems to be a current obsession with empathy and memory, but somewhere there needs to be an explanation why this is necessary or productive. Is memory connected to the causes? The explanation starts about page 6. There follows a discussion of different sorts of tests, not unlike the triangles on a recent TV documentary on autism. Countless tests have been undertaken to understand the empathic thinking process.../.but Why?

    Lovely line on page 9 "the purpose of the present study is to extend this to-date inconsistent work on monitoring the source of actions and the self-enactment effect in autism using a live eyewitness scenario". OK so this is ground breaking research, but to what end?

    To discussants on the NAS forum, to what extent do you feel that you have trouble with your "source of actions" and your "self-enactment effect"? Do you fell this would help you understand autism?

    Herewith at page 11, when I'm hardly grasping the point, we come to method. Eighteen diagnosed ASD participants (16 male) were compared to 18 (15 male) recruited through newspaper adverts, who did the AQ test and proved non-autistic. Why 18 of each is not explained.

    Each had to go into an accident treatment environment with a manikin kitted out as an accident victim, read the instructions and do the checks prescribed, like checking pockets. Why would this be a normal scenario for people with no background in it - most would likely be apprehensive - what exactly does performing this prove?

    Page 12 reveals they wdere videoed through a two way mirror. Were they told they were being videoed? Was that part of the consent? We don't know.

    They then did distraction tasks for an hour before being interviewed, to see what they recalled. The paper then discusses and analyses.

    For research at Royal Holloway and City University London, I'd expect to see a better written paper.

    But the fundamental problem is why this is being done.

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