Published on 12, July, 2020
Every now and then, a researcher, usually post-grad asks about information from us on the Spectrum. There used to be rules that you couldn’t ask for this on this forum, YET IT GOES ON STILL.
In post grad work there are many ethical considerations. This flirts with the line.
I appreciate the sentiment but the ends do not justify the means.
It's very likely that they might have just accidentally overlooked the specific rule about posting on the forum. A lot of people won't read the forum rules in detail before joining because they don't think they will be breaking the rules. I actually don't understand why this forum has restrictions about posting research advertisements given their study has already passed either the ERC or IRB. I suppose moderators might worry about fake advertisements that could potentially cause harm, but real studies, with an ethics approval number, university affiliation, and contact information of the principle investigator should be eligible to advertise almost anywhere from their ethical approval, and most places are fine with it (e.g., facebook, their university website, flyers on walls, etc), so it is an easy thing to overlook when people post on a forum that has a specific rule about no study adverts. I do wish that the NAS or forum would have a place that does have information about research study opportunities. Perhaps a separate webpage or sub-forum, so those who are interested in participating could easily look up the information, and those that do not like to bothered by adverts won't have to be annoyed by them. It will also make it much easier to researcher to follow the rules, as it will be very apparent that they need to post in a restricted section.
Requests for research participants are allowed, but only at the discretion of the NAS moderation team, and researchers should obtain this permission before posting. As this is a website for autistic people, other members may have impairments which make it difficult for them to assess the trustworthiness of requests, or they may lack the knowledge necessary to confirm the bona-fides of a research project. Hence the NAS prefers to vet them for the protection of users, as do many other autism support sites. To be fair, this forum isn't plagued by research requests as much as some of the others that I use, but being battered with requests from every psychology/neurology/sociology undergraduate needing a thesis for their degree who thinks that on-line questionnaires are a lazy way to collect data can get very annoying sometimes, and it is remarkable how many of them are blissfully unaware of the consequent self-selection bias.
However, despite my somewhat cynical comment earlier, I do participate in research myself; but only when I have satisfied myself not only that the research meets formal ethical standards, but also that the research is guided by the genuine needs of autistic people. There is plenty of research out there which meets formal ethical standards but is hamstrung by stereotypical assumptions about autistic people or obvious selection biases (e.g. taking a behaviourist rather than cognitive approach, exclusion of non-verbal autistic people, etc.)
If you're keen to participate, a good organisation to link up with might be Autistica, who distribute funding according to policy determined with the participation of autistic people. Their Discover Network allows you to sign up to be e-mailed whenever there's an opportunity to be a research subject. I wouldn't be against your suggestion of a specific spot in the forums here for those kinds of requests, either.
Thanks for the information about Autistica and their Discover Network!