It's always struck me that, as used, the term "neurodiversity" seems to be short for "neurocognitive diversity", which is a much smaller subset than the fullness of ways humans can be neurologically diverse.
Like it's really clear the term is not meant to include migraineurs and epileptics; people with conditions like prosopagnosia, aphantasia, synesthesia, amnesia, dementia, or Parkinson's; variant chronotypes; or any of the other weird and wild neurological conditions.
The term neurodivergence was quite deliberately deployed as a pushback against the conceptualization of certain conditions as psychiatric, instead of neurological. Autism and ADHD, of course, are in the DSM, putting them on the psych side of the neuro/psych divide, which now seems outdated and very wrong, given what we know about them today. I applaud that political use in that context, but...
As somebody on both sides of that line, I find myself uncomfortable with the terms "neurodiverse" and "neurodivergent". Insofar as I am neurocognitively unusual, I have a valid claim of inclusion. But insofar as I am neurologically unusual in ways that are not cognitive, the terms feel more erasing than embracing, more marginalizing than empowering.
This is not a call to broaden the definition of those terms. I do not want a movement of people with autism and ADHD to presume to speak for those of us with very unrelated conditions and quite different social challenges, or for that movement to pretend to be inclusive where it is not. Nor do I want to steal the thunder of a very important and valid political movement, diluting the focus on already marginalized peoples.
It's just the terminology turns out to be a bit of a problem.
@siderea@mariyadelano@actuallyautistic Honestly you are welcome. The community is not about gatekeeping and determining if a label or one of its definitions applies to you enough to be in our community and get support from each other. That support and respect will also not go away because you feel uncomfortable using a label for yourself. "We" try to never speak for "all of us", but we tend to advocate for inclusive environments for everyone.
@siderea@mariyadelano@actuallyautistic In that case I am sorry. I re-read your toots and now have no idea anymore about what you tried to say. I will not try to assume again.
I am also not exactly happy that you use that frustration of yours and aim it at me when I offer support and community. It rubs me the wrong way.
@siderea@mariyadelano@actuallyautistic This is a really interesting point and I've been kicking around the distinction between neuro and neurocognitive as it applies to "neurodiversity" all day, so thank you for posting this.
I agree with the way ND has a widely understood definition of primarily those two conditions as wide discourse seems to flatten nuance out of everything eventually.
Despite doing quite a lot of study on Parkinson's recently, for instance, it never occurred to me that it should be thought of as being under that umbrella.
Same with my own Aphantasia. It just sits in its own basket, away from everything else. But this is admittedly down to the systems-based approach of the medical system I grew up in, where each issue is discrete and able to be addressed absent context
Much like was said elsewhere, my extremely limited experience of discussions around Neurodiversity on here include and promote the voices of people with all sorts of conditions, but I can appreciate that the sheer weight of the big two would feel overwhelming, if not outright exclusionary
I'm not sure what to do with this awareness, other than keeping eyes and ears open as always, but it's definitely going to keep me pondering for a while, particularly in how to approach it personally and as I come into OT professionally
So, yeah. Thanks for sharing your experience and I apologise if I sound in any way patronising or overbearing, just wanted you to know it had stuck with me
@siderea@mariyadelano@actuallyautistic I gather its different, but there also is the difference - that I have not yet fully groked - between neurodiverse and neurodivergent.
But AFAIK one of these means "neurologically diverse", while the other mostly points towards autistic people.
Personally I prefer #neuroqueer, as it adds the queer sexual identity to the mix, and includes all neurologically diverse people.
@mariyadelano@actuallyautistic dyspraxia (clumsy, awful at sports, in primary school had constantly self-untying shoelaces, writing with large letters (were esp. absurdly large in primary school), pressing the pen to the paper abnormally strongly)
@cour13r5@mariyadelano as well as allowing that we might want to tick more than one box you usefully could have also included an option 'none of the above' for those who don't think they tick any of the other boxes.
Though when we communicate here clearly everyone should count it would also be instructive to know absolute as well as relative frequency in the #fediverse for each option.
I suspect we are overrepresented here compared to in the general population.
I have #SensoryProcessingDisorder. I consulted a therapist last year (at the age of 52) thinking I might be autistic. Based on our sessions he said he wasn't sure about that, but was 100% positive I have SPD.
@mariyadelano@actuallyautistic Never seen anyone mention diagraphia! Thirty years after diagnosis, my disgraphia has turned into a hobby of fountain pens and slow, intentional calligraphy. Also have diagnosed ADHD & OCD.
I'm AuDHD with dyscalculia, was a hyperlexic child (reading by 18 months on my own, over third grade level by 5). Smattering of anxiety disorder related as well (OCD & PTSD) and shall we say spicy depression.
@cherold I think under some conceptions they do, but they are more contested / people think they are symptoms rather than conditions. But all of this is complicated so I appreciate the specific details!
This poll got more answers than I could have possibly hoped for, and all of your comments have been even more fascinating.
I’ve got more than enough to write my piece so thank you all! I want to try and represent in a fair way all the nuanced questions and experiences you’ve shared with me. Stay tuned, I’ll share a link to the piece once it’s published (sometime in the next 7 days). ☺️☺️
Diagnosed as Autistic+ADD at the age of 48 - all questions about awkward social behaviour and difficulties in the educational system suddenly got answered after 3½ minutes in session with a psychiatrist with autism and ADHD as speciality.
@mariyadelano@actuallyautistic combined type ADHD, but mostly presenting as inattentive. No diagnosis, but starting to suspect I might also be autistic, although I’m probably closer to baseline neurotypical on that axis and I’m very high masking in any case.
@mariyadelano@actuallyautistic I'm autistic and ADHD as well as Migraine sufferer, dyspraxia and dysgraphia, aphantasia CPTSD and anxiety.
I don't use the term AuDHD because I don't understand it well enough and because autism defines me more than any of my other neuro diagnoses.
@mariyadelano I'm certified autistic, Bi-polar Tendancies, PTSD Symptoms(C-PTSD?), but I suspect I maybe Dyspraxic at my core, instead of all of the above. Environmentally caused PTSD from my nature/limberness being rejected since toddlerhood.
(my mom told me how I would suck my toes when I was a baby, I can still touch my face with my toes 46 years later). The shame and pain I felt when I bend so much more than typical people, emotionally and physically bend.
@actuallyautistic@mariyadelano I am self-dx autistic. Anyone saying self-dx is not valid can go sit and spin. I have misdiagnoses on my medical record that they refuse to remove, even though my psych agreed that she was wrong about them. So would I go get diagnosed and add another thing to my medical record? No thanks. Doctors already think poorly enough of me. I know that autism is correct, it’s incredibly obvious to me, and I am the only person who matters for this.
@mariyadelano@actuallyautistic Not sure how I would map my answer to your poll, but my daughter was diagnosed as Asperger's (before they folded that one into autistic spectrum disorder), and her issues were the same as mine, but I was never formally diagnosed, I was just considered a bright but socially clueless nerd who struggled with social situations.
@not2b@mariyadelano@actuallyautistic You could probably self identify as Autistic. The understanding of autism as a neurotype is very new. A lot of people from previous generations who would've been considered "quirky" or "eccentric" would likely fall under neurodivergent classifications today. I was never diagnosed, but when my kid was, the specialist assessing her straight up told me that the reason I saw her symptoms as "normal kid stuff" is because I'm likely also on the spectrum
@Vincarsi@mariyadelano@actuallyautistic Yes, I remember arguing to my wife that some of my daughter's problems were "normal", because she was like me. She did have issues I didn't have (and vice versa).
@Skyliting@mariyadelano@actuallyautistic the expanded definitions of those are so wide lately, "I'm not autistic but I'm neurodiverse" very very very often means you're at least a little bit autistic ❤️🩹 main question is how various things align or other conditions combine to affect your life and what to do about it!
@Skyliting@mariyadelano@actuallyautistic I fully understand that, but doctors suck. Ask 5 therapists to diagnose you and you'll get 10 answers (speaking from experience.)
I think if you take the RAADS test and arent in the neurotypical range, and you find autism-related advice to be particularly useful for you, and you're not speaking over others' experiences, then there's nothing wrong with saying you're on the autism spectrum.
@Skyliting@mariyadelano@actuallyautistic I'd stay silent about this except it took my AFAB partner over a decade of mental health work and nearly three decades of pain to have a doctor say "that sounds like autism" instead of a half dozen other terms, and she's made more psych progress in weeks than in previous years. AFAB people are massively underdiagnosed and insurance companies don't like conditions they can't throw pills or CBT at. You may enjoy "Unmasking Autism" as well ❤️🩹
@Skyliting@mariyadelano@actuallyautistic it should be noted that two of the most official, credentialed, hospital certified, insurance covered people my partner saw were:
a psychiatrist who said "your psychologist [down the hall] was right, you are very pretty" and then was completely unhelpful at his one job of understanding her history and prescribing appropriate medication and advice
a psychologist who, upon hearing of a death affecting someone near her, suggested talking to a psychic
And if you manage to find a psychiatrist who lived under a rock for the last 20 years, they will tell you that normally only males can have autism and you likely "just have borderline".
If they didn't live under a rock, they might do the same simply out of habit.
@Skyliting@mariyadelano@actuallyautistic the two therapists who helped her the most so far are just random licensed professionals who she happens to vibe with after much hunting, trial and error, and privilege, and we pay out of pocket for. In such a situation you can basically keep rolling the dice until you get a diagnosis you want, so it's not psychologically useful. What's useful is when someone helps you work through issues and practice a lifestyle and mentality that works better for you.
@wilbr@Skyliting@mariyadelano@actuallyautistic Look like my own story and we are so many with a similar experience! Like many others I got x diagnosis before a young psychiatrist finally suggested autism while I was 49.
this statement is the very secret entry ticket to an official self-diagnosis 😉
if all the autistics here who ever had that thought at the beginning of their journey of discovery raised their hands now, I bet pretty much all those hands would be up 😆
(“impostor syndrome”, very common because we take things seriously and want to be 250% sure)
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