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Public Feedback

How can I do better?
Hi! I want this to be the best possible resource on neurodiversity that it can be. If you have any feedback for me, positive or negative, please let me know using the public feedback form below. I’ll do my best to reply to people in the “response” column, but I can’t promise I’ll reply to everyone depending on how busy this gets.
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I’d love to see more content on neurodiversity and trauma!
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@yavieniv on twt
afaik plurality/multiplicity counts as neurodivergency and yet it is something neglected in many ND narratives/spaces. still I guess it would be good to reach to plural community first on what they (i’m a singlet, so i’m coming from an ally perspective) think. afaik places like @TpaNonprofit and hashtag #pluralgang on twt are good starters.
Thank you for this, that’s a great point!
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emilyroseogrady618@gmail.com
Have you ever heard of the double empathy problem? I think you might find this Ted Talk interesting. As an autistic person I found this talk very helpful. https://www.ted.com/talks/jac_den_houting_why_everything_you_know_about_autism_is_wrong/transcript?language=en
Yes, and I think having an essay on the site about double empathy would be great!
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jen.demesquita@gmail.com
While the term “time blindness” is commonly used to refer to the time perception issues suffered by us ADHD folx, it is a bit of an ableist term. It appropriates ‘blindness’ from the low vision/blind community and frames it as something inherently negative. Something more descriptive and neutral like “time obliviousness” “difficulty perceiving time” or the like would be more inclusive
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hanibal.lector13@gmail.com
Just want leave a comment about the survey. Currently ‘scoring’ is shown as either binary or 1-10. For many (most) ND’s the level we experience things at varies over different periods of time or in different environments. Being asked to choose a specific figure (even a typical one) may prove difficult if not impossible for the respondent (& like me end up taking a best guess). I also noted a comment on the scaled 1-10 ‘most of your answers should probably fall between 4-6 unless you experience something significantly differently than the general population.’ For many of us 1 or 10 are insufficient extremes. secondly & I’m very this, we are being asked to gauge knowledge of the general population which inability as almost a definition of autism. I have no idea what the general population do or think so how can that question be answered. I don’t see much on personal circumstances - this has big effect on me. I don’t work see many people live on my own (recently widowed) have sufficent money for my needs, own my own home. this means I’m largely in control of my environment so general anxiety is kept down. flip all that on it’s head & it would very high indeed. This bias needs taking into account. Finally please, no ‘people tell you that you are…’ type questions, people don’t talk to me - no ’you go the restaraunt & …’ type questions - I don’t do that, how can I answer that. maybe you’ve had all this or similar for others but just in case you haven’t.
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For OCD, could there be less heteronormative and cisnormative resources on sexual orientation OCD? I found OCDLA to be very helpful in demystifying symptoms and types of OCD, but I feel there needs to be a shift in language and perception of “HOCD” as it is commonly known in mental health/ND spaces (which says, 4 paragraphs in on the OCDLA site, “it is not exclusive to heterosexuals.” So.... why is the site still centring the term “HOCD” then, when sexual orientation OCD is a more inclusive term?). This misleading name deferred my realization that my OCD was back in a different form, triggered by the transphobic rhetoric and legislature happening across the US and the UK. This label also paints a picture that cisgender heterosexual people are more likely to be plagued by sexual orientation OCD when, as an example, if you are gay and come out, you are far more likely to receive messages like “are you SURE this isn’t because of trauma/your parents/a phase/etc.” which can send more LGBTQ+ individuals predisposed to OCD into having sexual orientation OCD rather than cisgender heterosexual people who do not deal with these seeds of doubt being planted in your mind by a bigoted society. There should be perhaps a resource for sexual orientation OCD made by and created for LGBTQ+ individuals, as despite how helpful OCDLA is, I don’t think they should be a source someone should go to for sexual orientation OCD, as long as there aren’t substantial edits made to their resources on “HOCD”. I also feel the framing of sexual orientation OCD to be insufficient as well. As a trans person suffering from “sexual orientation OCD”, the thing is, being trans is not a sexual orientation which makes the label somewhat inaccurate (although I do have OCD spirals around my sexual orientation, I have them with my gender identity too! These labels make things very muddy very fast.). Sexual orientation is who you’re attracted to, and gender identity is what you identify as—wildly different things. This is why the terminology has shifted over from “transsexual” to “transgender,” because while both are valid terms for people to identify with, transsexual can make people new to the concept conflate it with something similar to homosexual. OCDLA seems to have made this mistake, and in their site says “some people obsess that they are secretly bisexual, or that they are secretly transsexual or transgendered.” in their blog post called “HOCD: 30 Things You Need To Know.” This should raise some red flags and bring into question their usefulness as a resource as 1) gender identity is separate from sexual orientation, although they sometimes might intertwine and 2) transgender is an adjective (e.g. “Jane is a transgender woman” could also be “Jane is a young woman” as they are both adjectives). I hope this doesn’t seem purely libel thrown at OCDLA nor do I think it is not an invaluable resource for many. I just think that it is imperfect, as all things are, and feel that there should be more visibility around LGBTQ+ individuals who already suffer from the stigma of their identities and should not have to deal with additional stigma and a lack of resources where they seek mental health treatment, especially when OCD centres around shame. I really enjoyed that essay on Neurodivergence As Queerness and hope you could bring on more LGBTQ+ voices and their perspectives on neurodiversity, especially centring OCD when there has been a dearth of resources. I would suggest to bring a transgender guest on specifically, as there has been a wave of transphobic rhetoric these past few years which may trigger many trans people’s “sexual orientation OCD.”
TL;DR I think OCDLA should still be a recommended resource, with caveats. There should be efforts to include and centre LGBTQ+ individuals on discussions on OCD. This space so far has a good track record of uplifting LGBTQ+ voices and I hope that could continue with trying to uplift LGBTQ+ voices and how they fit into treatment on OCD in a sea of cisnormativity and heteronormativity. If there is a piece on LGBTQ+ identities and how that might interact with OCD, I hope this feedback illustrates why it would be paramount to commission a trans writer (particularly those who are further marginalized by class, race, and ones impacted by transmisogyny) as transgender individuals seem to not be included or heard by the current paradigm of “sexual orientation OCD” at all. This video by the International OCD Foundation which has multiple LGBTQ+ individuals on the panel is a good place to start (https://www.youtube.com/watch?v=MYeJwwp1AhQ&list=PLx2UyPr4U3GIpn8ClhUfjG1wmIND7wKJs&index=19), alongside consulting with other LGBTQ+ people on this subject.
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I was looking for resources about the combination of Autism and Adhd. Social media posts seem to focus on one at the time OR they are about the overlap, about how to know whether you’re both. But I was looking for advice on how to organise my life. Some specific tips have helped me a lot, but others are completely unnecessary because I’m both, and then there’s a gap, also precisely because I’m both. But maybe my question is way to specific. Thanks a lot for this website!
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Rod
I’m an autistic person and tried to read that main “How to talk about autism” article. There is a lot wrong in that from the start. First of all, “autism” and “autistic” are not and should be not written with a capital A because they are not that kind of noun like someone’s name. There is nothing “very special” about it to deserve a capital; it’s a health condition like diabetes, cancer, covid or any other. Second, please stop with the “person first” idiocy. That’s being extremely touchy-feely. I’m autistic, you are autistic, period. You won’t revolutionize language by being pedantic. Third, that “no non-Autistic person can understand” is pretty ridiculous. I discovered my condition late in life and was very much helped by people who were not autistic and understood it much better than I did, but I spent my whole life confused as to what I have and simply could not understand it. Show some respect! I fully respect those people and think very clearly they know a lot better than I do. Then I stopped reading because you’re coming from too many wrong premises.
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tallus@gmail.com
Disable the right-click hijacking so links can be opened in the background. It’s not get to have to deal with the distraction/forced context switch.
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It would be nice if there was a search function (or if there is one, for it to be easier to find!)
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email
None
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Bug Report
Your website seems to disable scrolling via keyboard keys, forcing the use of mouse. I would appreciate it if you fixed this usability issue.
All of these comments about the UX, I wish I could change it but I can’t. It’s the platform that I’m hosting on.
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Your document ‘Creating an Autistic-Friendly Workplace’ is fantastic! I’ve been trying to cite a permalink, , but this fails to load (on both Chrome and Firefox), with the error “Unexpected token < in JSON at position 0”. Is this something that’s easily fixed? (No problem if it isn’t, would just hate to lose this valuable resource - is there a backup anywhere else, e.g. Github?)
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