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

Hi turnsignal,

I have tried to email you regarding your feedback but I haven't heard back, did you receive it?

As no participant has come further, I'm locking the thread for now. Happy to review this over email. 

Best wishes,
Anil 

Hi longman

turnsignal said:

[Note to moderator: I am a NAS member with AS seeking accounts from my fellow participants about a past/historic event.]

I show above a quotation from my first post of this thread. It gives my reason for starting the thread, i.e. to seek accounts from others who were in the "ASD group" of the LES study.

What was the point of airing this on a public forum if you wanted it to be participants' eyes only?

In answer to the first and second points within your question:

1) I have no choice other than to make a public appeal because (according to normal practice) the LES study's participants were not given each others' contact details; so I can't (initially) contact them, other than publicly!

2) I have never said that this thread is "participants eyes only".

NOW OP pipes up she doesn't want any comment from outsiders, just her fellow participants.

These are two mistaken suppositions you've made - I have never said that that I don't "want any comment [in the thread] from outsiders".

I was interested to read your analysis of the LES study's report though I dissent from your opinion that the report is badly written. You asked for the LES study to be assessed by the NAS Information Team which is a very different action than you adding your comments to this thread.

...it might occur to OP firstly that fellow participants are ... regular guinea pigs ... and may not be likely participants in this forum.

In answer to the two points within your statement:

1) I know that my fellow participants were "regular guinea pigs" (being on one of the institutions' databases as such - as was I) but it remains the case that I don't have their contact details.

2) They might or might not be members of the NAS Community forum but I hoped some would be and I think that was a rational hope! I was a participant in the study's "ASD group" and I'm an FM of the NAS Community - so why wouldn't others have both those two characteristics? I think maybe the thread's not elicited accounts because other LES study participants are members of online forums older than the NAS Community.

The participants with autism were already there it seems...

Can you clarify this point please, I don't understand it - where were the participants with autism already?

This thread has been running for ages, with much concern about its content.

There cannot have been "much concern" because there's been only two posters other than myself. The concern of the two of you may have been "deep" but there hasn't been "much" overall!

[The OP posted] a thread that vaguely attempted to anonymise people and institutions actually quite easily recognised...

Nothing I've posted here on the forum would allow anyone other than people who actually participated in the LES study to recognise its Investigators or its Institutions.

You posted the names of the two institutions in two posts in the thread; I've asked for those to be censored!

longman said:

...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 the fundamental problem is, why this is being done.

Hi longman

A huge proportion of the autism research by universities (funded by the State and charities) is "basic research" having no discernable advantage to people with autism - so it's unfair to single-out this study for criticism on that point!

I think the LES study's stated objective had scientifically more value to society (and potentially to people with autism) than much other autism research. I am troubled by elements of its methods.

Regards

I confess to be somewhat puzzled by OPs responses. What was the point of airing this on a public forum if you wanted it to be participants' eyes only?

The participants with autism were already there it seems - the comparison group was found by advertising in the press. So it might occur to OP firstly that fellow participants are an identifiable group in their own right (undergoing treatment in the same place, or regular guinea pigs), and may not be likely participants in this forum. Certainly none spoke up on here.

This thread has been running for ages, with much concern about its content. NOW OP pipes up she doesn't want any comment from outsiders, just her fellow participants.

NAS Moderator this thread should be locked. I think the forum has been abused by OP, firstly to post a thread that vaguely attempted to anonymise people and institutions actually quite easily recognised, and then came back appealing for help. I do feel there were hidden agendas here that shouldn't have used this forum.

Hi turnsignal

The NAS information team agree with you and don't feel they're best placed to look into this further. Research Autism may be a better option should you wish to pursue concerns at some point.

thanks,
Anil 

longman said:

I wasn't happy that while viewing the document there was an image of a scowling face at the top. That worries me if I was using a safe link or my computer has now been compromised.

...is this a restricted access document ... and should the link have been posted?

Hi longman

The paper has been made available by the study's investigators to be read publicly online. The website on which it appears, www.academia.edu is an outlet recognised by academics for that purpose - it isn't a "rogue" website.

I don't see a "scowling face" when viewing the paper. I think the likeliest explanation is that you're running a security application which is giving you a falsely positive alert which you could safely dismiss. Is there some elaborative text with the "scowling face"? If your application is suggesting, "Don't alert me about this problem with this website again" my feeling is you'd be safe to Accept it.

Regards

Anil A - Mod said:

Hi Longman,

I can try and flag this with our information team to look into further.

Hi Anil

I'm this thread's OP and I was a participant in the LES study. As I described originally, in posting on this forum my purpose is to evoke accounts of their experiences from my fellow participants for comparison - regrettably, that is yet to happen!

Academic research undergoes several stages of examination by its associated institutions internally and in any event - to qualify for the Data Protection Act's Research Exemptions - "must not cause or be likely to cause substantial distress" to the study's participants (http://www.bris.ac.uk/secretary/dataprotection/research/guidelines.html).

Whilst "longman"'s anxiety about aspects of the LES study demonstrates commendable social responsibility on his part, with respect it is for a study's participants primarily to decide how to pursue any grievance held (i.e. ahead of onlookers). Normally, appropriate destinations for expressions of dissatisfaction are: the most relevant Research Ethics Committee (REC); the Information Commissioner's Office (ICO); the Civil Courts.

I was a participant in the LES study and for the time being I consider it inappropriate that the NAS Information Team attend to it!

Regards

Hi Longman,

I can try and flag this with our information team to look into further. 

thanks,
Anil 

Am giving this a nudge, although the weekend is only just over, but would NAS please look into this. There are so many things I find wrong with the research paper in the link.

We should have some say, as people on the spectrum, as to how we are treated when we volunteer for research.

Until Saturday I had simply the original posters claims about the study, which were difficult to understand. Reading the report I'm horrified.

It is muddled and poorly justified. It is not clear why the research is being conducted this way, and there are so many variables not addressed - not least how the scenario would have affected someone on the spectrum's state of mind.

But the business of the video, which appears superfluous, needs answers. And I'm still puzzled about the scoly face that appeared when I was reading it - is this a restricted access document? If so how did OP get it and should the link have been posted?

Lastly I think we should be told more about research. People o the spectrum aren't mere laboratory rats. Autism shouldn't preclude us having civil rights.

And for any snidey professionals out there, who may think outsiders don't have a right to know what they are up to, I'm a retired lecturer with research supervision qualifications, so I know bad research when I see it.

I also wanted to come back on the scenario.

A lot of universities and colleges have installed mock-up accident and emergency mobile suites. I know because I got roped in to help when one being loaded where I used to work went squint of the opening coming off the loader. As a reward I got treated to a preview.

These suites have a two-way mirror so that what students do in the facility can be monitored and discussed after as part of an assessment. They are training suites. The students being trained consent to be videoed.

What greatly worries me is someone suggested using this suite for the current autism study, and oh by the way, there's an added advantage, you can video the proceedings.....

In other words was video used just because it was available rather than because it was research justified?

And did participants give consent to being videoed?

There are really serious research ethics issues here. This study needs to be challenged.

There clearly isn't enough regulation and monitoring of autism research.

I do feel we need more research accountability where autism is concerned.

Is this research for research's sake? Or is it productive?

The scenario concerns me greatly:

It isn't a normal everyday situation. It would in all probability cause someone on the spectrum to experience confusion and sensory overload, but it is their recall and empathy that are being tested.

What steps were taken to exclude or control other factors - such as sensory overload, or variations in the degree and traits of autism of those participants?

Why was this videoed? Possibly it helped the interviewer understand what the test subjects actually did, relative to their interview responses, but is that really necessary for the research outcome?

Recalling previous discussions around this posting, was the use of video covered in the consent form? Was the disposal of video covered? Was the video only used to inform the interviewer, or was it used in other contexts such as teaching?

I wasn't happy that while viewing the document there was an image of a scowling face at the top. That worries me if I was using a safe link or my computer has now been compromised.

I think NAS should ask the Research Directors at Royal Holloway and City University to explain.

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.

My fellow participants in the LES study may be interested to read its Final Report, which is online here:

http://www.academia.edu/2230012/Recall_of_a_live_and_personally_experienced_eyewitness_event_by_adults_with_autism_spectrum_disorder

Seems to me that if you agreed to allow your responses to be recorded on video, and you agreed for that to be for ONE research study, the one you were on.....it is highly irregular if the researchers then pressed you for permission to use it in other studies.

If you didn't complete a consent form, this research shouldn't have been undertaken. If you signed a consent form you are entitled to a copy.

The significance of Questions 4, 5 and 6, and Question 8 still puzzle me, as an observer on this forum (having no involvement with the study). Perhaps the questions are too cryptic and to leading, for others who were involved to respond. They may have the same reasons as you gave to question 7.

My question to NAS Moderators - are you able to take up with the research team concerned why there was no consent form used, as would appear to be the case here?

Categorically, no research should be undertaken without a consent form. If this research was carried out under the auspices of a University, that question needs to be addressed to that University's Vice Chancellor. And until the matter is investigated all such research within that institution ought to be suspended.

But that's just my opinion.

To be honest university vice-chancellors seldom know what is going on in their universities, whether it is the quality of the research or the correct procedures, or the confidentiality and ethics - and for the astronomic salaries and perks involved, that's the real shame on universities.

To encourage my fellow participants in the LES study to give their accounts, I'm posting answers concerning my own experience - first!

1. Did you agree ... to be video-recorded? Yes

...[to be used by] how many research studies? 1

2. ...[that being] only by the LES study or only by a different planned study? LES study

3. Were you [on-the-day of your participation] given a copy of the LES study’s Consent Form ...? No

4. On the outward journey, how many minutes were taken...? 11 minutes

5. ...did anyone tell you surprising information about the First Aid task or about the room where you did it? No

6. Have you ever [received unprompted contact] since, about [the different] planned study? No

7. Were you contacted later in the year 2012 ... asking if the videoed interview with you could be re-used...? Yes I was contacted and I didn't agree because it would've diminished my medical confidentiality.

8. At the end of the year 2012, ... a study ... required participants to watch a video drama clip which depicted a mother supervising her adult daughter embarking upon a train journey... Did you take part in this study? Yes

Also, as Longman says, how can any respondents guarantee your own identity and purposes?  It would have been far better to use a forum with a private messagine facility asking people to contact you that way.

Each participant should have confidentiality. Therefore issues might arise if different participants had to disclose to other participants what they experienced. Obviously you can ask them to do so voluntarily. But I think you need to consider carefully what you are trying to achieve by this.

People may be reluctant to disclose their experience to you (and publicly on this forum). They don't know your intentions. And they may feel they don't want to disclose their experience in public. The same ethics arise here as with conventional research. What happens to their disclosures? And even though they have a username here their information might identify them.

Are your motives purely research on the process of being a test subject in research. You could research that by asking a research group to involve you to look at that aspect in future research.

If you are seeking evidence that the research in the specific case where you were a participant wasn't correctly carried out, this isn't the way to do it.

Anil A - Mod said:

Turnsignal, have you had no luck in contacting the original researchers? 

I have done so already, but that didn't (and couldn't) elicit the information I'm seeking here!

There are several "interested parties" associated with each autism/psychology research study that takes place, e.g. its Principal Investigator, its Co-Investigators, its approval-granting Research Ethics Committee(s), its government agency or charity funder.

Of all those "interested parties", it is the experiences of the "interested party" culturally closest to me that I'm seeking - specifically my fellow participants. Members of each of the other parties will have different perceptions; I'm not seeking those in this thread.

Turnsignal, have you had no luck in contacting the original researchers?