Re: New member

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The new member requesting participation in a survey here was approved by Cornflake in this thread:

viewtopic.php?t=426274&p=9656706#p9656706

Being autistic isn’t a requirement to engage in worthwhile research on the topic.

Edit: This was a response to a post that’s been deleted.

Last edited by TwilightPrincess on 02 Apr 2025, 3:59 pm, edited 1 time in total.

No one is forced to participate in any surveys. It's optional.

The “New Member” deleted their post, as well they should.

{redacted}

Last edited by Cornflake on 02 Apr 2025, 4:02 pm, edited 1 time in total.: Redacted a personal attack

They did not delete their post. Your posts were moved to a separate thread.

Source? (preferably one that’s relevant to this situation)

You seem to be making a lot of assumptions based on insufficient evidence. Did you engage with any of their research?

Viable research can be done by people of any neurotype. What matters is the methods they employ. If we solely relied on research by autistics, I think it would greatly hinder progress because there’d be a lot less of it.

Thank you for your comments. I completely understand the perspective that autism research should be conducted by autistic people, particularly in light of the history of autism research and the harm that has often been caused. I also really appreciate your encouragement to engage with the research itself—I hope doing so will offer a fuller picture of my project and its intentions.

My first publication is available for free here: https://www.nature.com/articles/s44271-024-00142-0

It’s an interview study with 16 autistic adults aged 40+, focused on how they define quality of life and their experiences of ageing. The paper includes detailed information about our recruitment process, the interview questions, our alignment with the neurodiversity paradigm and the results.

The current study is an online questionnaire about quality of life. It combines existing validated survey items with new questions developed directly from the interviews. We also sought feedback from autistic adults on the clarity and wording of the new questions.

For both projects, we’ve been fortunate to have an autistic researcher as part of the team and as a co-author. She has been involved at every stage—including analysis and publication of the first study, and in developing the current survey.

Is this approach perfect? Absolutely not. There are inherent limitations in having a non-autistic researcher lead the project. But I’m doing my best to approach this work with respect and in collaboration with autistic people, within the scope and constraints of my PhD.

If you have any questions about the project, let me know. Otherwise I will leave this explanation here and step back so others can continue the conversation as they wish.

PhD_autistic_adults, I have no problem with you performing research here. In reality, you may even have a condition called Asperger's Syndrome. Many smart Aspies actually go off to college and get advanced degrees.

I also have no problem with legitimate research taking place here...

...as long as it is done in a respectful manner...

...and doesn't misrepresent anyone's Autism status...including the researcher's.


So, I see no reason to protest this request but, since I don't live in UK, Germany or Luxembourg I'll just wish you luck and move along.

Thank you! and also for your response on my "new member" post.