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Rule Clarification? What is Research?

SpectralGardener

So I posted information from a self-research project in another post. Because I thought other Autistic people might think it was interesting and i wanted to get some other autistic opinions about it and because I thought other autistic people who had bounced around the mental health system for years without real answers until they found autism might resonate with some of this. Or also might resonate that finding out about autism provided some answers but opened a whole new pandoras box of other unanswered questions and I was sharing some of what I found spoke to me when I went looking for some of those answers from my specific perspective and experience. I was surprised to see my first post to the community flagged for a rule that felt like it only halfway described what I was doing and so I wasn't sure where we draw the line, or if several additional lines could be added for more clarity in the future?

Rule 14: No research requests. We do not allow research requests in the Online Community. Direct research requests should be submitted to our Research team at research@nas.org.uk. This rule ensures that privacy and ethical standards are followed. 

I understand how it may have looked like a research project and by some definitions it is but I'm not sure exactly how we are defining "research". It is s a very broad term that covers everything from chaos theory (which I am fascinated by) to a community poll of everyones favorite sock color. So in that sense how do we define what constitutes a research request in this forum?

community.autism.org.uk/.../late-self-diagnosed-mislabeled-in-usa-mental-health-system

I am not a professional researcher who was looking for professional collaboration, i'm an autistic pattern recognizer who was looking to show patterns I noticed to other autistic individuals in one of my special interests which lately has become cognitive science, this was not for a research institution but a personal passion project. I am an ecologist so I am very systems literate so it likely came of as a professional research project.

It was a self-exploration and learning process as a very logic brain minded person. I did a deep dive and performed a series of meta-analyses between cognitive science and the feedback loop dynamics of a wide range of other sciences and found very interesting results when I looked at recursive feedback loop mathematical formulas and what appear to be possibly overlooked or vastly underused fibonacci tied constants. Some are used for certain highly specific applications across a range of heavily siloed sciences but as far as I can tell nobody was plugged all of the constants i looked at into all of the formulas in the ways I have and all I can say is I have been flabbergasted and astounded by the results which have not been formally tested yet as I am still compiling my data into something cohesive. Yet so far across dozens of tests to break the patterns it has just built a more cohesive message that PHI, sqrt13 and 13^13 govern attractor dynamics at certain phase shift intervals at a foundational quantum mechanics level and I am beginning to identify constants for sub-phases within them. What started as a cognitive science research project appears to have turned into something much bigger than initially planned if professional collaboration came from it but that is not and never was my goal. I simply wanted a better roadmap for my brain than the DSM metrics that failed to see me as a late diagnosed adult in my journey to not only help myself but others who also looked for answers in a system that forgot they existed. If my work passed the muster of more rigorous and advanced scientific modeling than I have the tools for myself it would be very exciting and potentially hugely impactful in better predictive scientific modeling. Still too early in the process to know and it deals in a lot of fields that are not my line of work but have long been special interests of mine.

If this is too potentially controversial because it deals with out cognition I understand and can find other avenues for exploring my passions, this is just one of the places I thought of looking because most people around me look at me with a blank stare when I talk about this stuff but I thought there might be some other autistic people on here who wanted to geek out about weird science and were also not afraid to ask the deeper meaning questions that challenge "neurotypical" comfort levels.

  • My personal take. This is a case of a mod skiming the post and getting it wrong. You declared yourself a scientists in your post. Sprinkeled a lot of technical terms in your post (which was some what 'wall of textish') and posted a link and the mod just asumed 'university reserch study.'

    If personal reserch on autism is covered by rule 14 then any kind of question like "hey autistic people do you also experence X." would be banned as a consequence. My understanding is rule 14 applies to academic / industiral / goverment reserch studies. Not some bloke indulging their curiostity. But maybe the mods can clarify?

  • I read your original post earlier and considered it fitting under the rule. I think part of the difference between 'favourite colour socks poll' and this is that it is directly relating to autism, and the rule is in place to ensure that people who want to collect data on autism or autistic people cannot use this forum as a recruiting ground without ensuring their various requirements (e.g. data privacy, ethics consideration/approval) are met. Particularly as the status of being autistic is categorised as medical information and therefore a special characteristic under GDPR in the UK. 

    I have seen you around the forum and am aware that you are not intending this to be exploitative, but these are still important considerations, even for 'personal passion project' particularly if you are considering publishing at any point. Also, allowing passion projects can quickly become a slippery slope, when is a project 'official' enough to be considered research? Does a dissertation count? What about an EPQ? What if it's ungraded but is still schoolwork? So any kind of data collection I would consider a research project, and yes that does include opinions with the status that they are autistic. 

    But as Bunny said, it isn't our opinion or definition that matters, it is that of the mods. And I agree with them here. 

  • in reply to Bunny

    Thanks for your response, I do see the misunderstanding and it really comes down to that I really wasn't sure how we were defining "research collaboration" requests and if there were specific exemptions. I have been in a rushed unmasking process because of persistent pressure to "perform" after I essentially hit a wall of perpetual autistic burnout after a years long buildup to this point. I feel better than ever internally because it feels like I am finally living authentically on the outside but it was such a sudden shift in my personality that those around me are worried something is wrong with me.

    I honestly was a bit frustrated to have to explain the intent behind my first attempt to reach out to the broader autistic community. It also didn't feel like it met the spirit of what the research project prohibition rule was intended for but honestly I wasn't sure because it felt the rule was a bit broad-reaching and maybe not specific enough? I have edited my post to reflect a more level headed and more clear tone hopefully.

  • I suggest emailing the community manager to discuss the matter privately:

    CommunityManager@nas.org.uk

    Upon reading your earlier thread, my own interpretation - rightly or wrongly - is that you seemed to be asking for contributions from others to potentially incorporate into an opinion piece, which you intend to share with a wider audience over time. You prefaced that by seemingly acknowledging that this might not be appropriate:

    “I'd love to hear other autistic experiences and perspectives on these topics if this is appropriate? I have written an 8 page opinion peice that goes into more detail and I hope to start adding citations of empirical evidence to make the case for better diagnostic models with a better understanding of cognition.”

    However, neither my interpretation nor anyone else’s here is as important as that of the mods and community manager, which is why I’m suggesting that you discuss it privately with them.

    In my opinion, they’re just doing their best to try and protect our vulnerable community (including in accordance with their legal obligations), and I personally fully support that.

    If there’s been some kind of misunderstanding, then you can hopefully resolve it with them directly.