@26pglt@mastodon.au
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26pglt

@26pglt@mastodon.au

Small furry creature, lives in the garden. Always curious. she/her
Naarm, Wurundjeri land #AutisticElder #sociologist The map is not the territory. Where we look from & our #ToolsToThinkWith determine what we see. We can choose kindness. ⭐️ = I hear you. Avatar: Winged rabbit wearing blue trousers from an Ivy Wallace book. Banner: Japanese bronze Buddha wearing a green crochet beret w a lorikeet feather in it. On each side a vase of nasturtiums w orange flowers reaching across to touch.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

26pglt, to actuallyautistic
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Reading through links in this resource from @mykola. Plenty good stuff here, on challenges, gaslighting, trauma & shame. Essay on neurodiversity as queerness is interesting too.

Our experience looks so much different from the inside 😎🙏
Thx @Susan60
@actuallyautistic

https://coda.io/@mykola-bilokonsky/public-neurodiversity-support-center/so-someone-told-you-you-might-be-autistic-huh-105

26pglt, to actuallyautistic
@26pglt@mastodon.au avatar

Study finds that believing neurodivergence is ‘natural’ is related to greater well being. Concludes that believing in nd as a reified category can be a good thing, even tho in similar situations it’s usually not

Or maybe it’s just knowing that others have experiences like ours that is protective! Understanding this as based on shared experience rather than a reified category works just fine @actuallyautistic

https://psyche.co/ideas/essentialism-is-insidious-but-it-can-also-be-helpful

26pglt,
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@liquid_clear @actuallyautistic I hope you don't really think being nd for you means being fucked for life. Can't tell if you're joking. Either way, I reckon you're fine just as you are 💜

26pglt,
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@GreenRoc @actuallyautistic one million times with you on this 💜💜💜

26pglt, to random
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Another person’s perceptual experience may not be the same as ours.

This is Fundamental to understanding the experience of folks. I always assumed everyone perceived the way I do & I’m just a sook who can’t cope. This is not true! I am sooo glad my partner now understands this.

Same applies to information processing & seeing patterns. I thought everyone can see what I do. They don’t. We’re ok.

https://aeon.co/essays/the-moral-imperative-to-learn-from-diverse-phenomenal-experiences

26pglt,
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This one 👆is for us, folks. @actuallyautistic

26pglt,
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@Pagan_Animist @theaardvark @actuallyautistic

It’s bleeding obvious once it’s put this way, innit. I struggled all my life to understand my differences w sensory &information processing, thinking of each bit as a different issue & me as sooky &broken. Framing as neurodivergence over the past 15yr (since my early 50s) has been a revelation. Reframing is slow work & there’s a lot to grieve for, but through it all the company of nd peers is THE BEST THING.

russellmcormond, to actuallyautistic
@russellmcormond@fosstodon.org avatar

Introduction is: "Whenever I mention my feelings on ABA, someone always asks me for alternatives to ABA."

https://neurodivergentrebel.substack.com/p/alternatives-to-aba-if-not-aba-then

I really want to know why people think that is a valid question?
ABA is not about helping the person be themselves or have a better life, but to try to “convert” them to be more like other people to make those other people feel more comfortable with their beliefs.

@actuallyautistic

26pglt,
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@Susan60 @JoBlakely @russellmcormond @actuallyautistic

Family counseling based on ‘we all need to learn to be kinder to each other’ gave us useful tools when our undx nd family was struggling 30yr ago. Available dx for my daughter then were BPD or ODD (bc girls aren’t autistic, right?) & I was determined to keep her away from that.

Now we see that almost every woman in our fam over at least 4 generations is autistic & we’re all much happier!

26pglt,
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@Susan60 @JoBlakely @russellmcormond @actuallyautistic Have to add, the brothers & sons in our family are nd or autistic also but they were always bleeding obvious 😂. It’s just that when my mum was parenting in the 1940s & 50s, autism in boys was a shameful secret & all the mother’s fault. No fun for that generation of undx, unsupported autistic mothers. They raised many damaged kids.

I’m SO GLAD that intergenerational trauma can stop here.❤️‍🩹

26pglt,
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@roknrol @Susan60 @JoBlakely @russellmcormond @actuallyautistic

Yup, a tricky one.

Almost everyone who has an autistic neurotype will experience trauma from a lifetime of gaslighting & acculturation, so how can we even know what nd is without trauma? All trauma survivors are our kin.

Similar issues in schizophrenia research, w impossibility of finding pple who’ve been dx but not used medication. Our concepts are too clunky.

26pglt,
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@roknrol @Susan60 @JoBlakely @russellmcormond @actuallyautistic

Every lens we can use to understand this will show us some things while obscuring others. For me, context (material situation, culture, history), trauma & neurodivergence are most helpful atm. The more eyes we can see through, the better.

Any understanding we create is only a map. The raft is not the shore, & all that

26pglt,
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@sahat @roknrol @nellie_m @Susan60 @JoBlakely @russellmcormond @actuallyautistic 💔

libroraptor, to tinnitus
@libroraptor@mastodon.nz avatar

I've heard tinnitus for years, maybe decades. It's just been almost completely fixed by my physiotherapist who has been releasing a pinched nerve in my neck to address a different set of problems. Neither of us had any idea that nerve pinches could cause tinnitus but there turns out to be lots of literature on tinnitus caused in the temporomandibular joint nerve especially.

Neither did my GPs or audiologists know about this.

Maybe this'll help someone.

26pglt,
@26pglt@mastodon.au avatar

@libroraptor thank you! Mine is relentless & varies in pitch & volume with many things. Has certainly been worse when concurrent with neck problems (which are pretty much my normal). Anything that helps us understand & relieve this exhausting condition is important

26pglt, to Autism
@26pglt@mastodon.au avatar

https://podcasts.apple.com/au/podcast/neurodiving/id1715030329

Someone mentioned this here a few days ago - thank you!

Neurodiving, a podcast by two neurodivergent philosophy scholars, about the politics of research. I have Lots of Opinions about it - esp re the dodgy research methods (correlation plus speculation equals publication) that pass as normal in some biomed & psych fields, & the importance of funding models & institutional environments in determining who & what gets funded (& where are the in this conversation! Analysing these aspects of the situation is what we do!! 😫) - BUT overall it's excellent. Start from the beginning.

This website from ep1 looks triffic
https://aucademy.co.uk/

@actuallyautistic
@Susan60 you may enjoy this

26pglt,
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@Susan60 @actuallyautistic 😂 let's catch up for a debrief

26pglt,
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@Susan60 @actuallyautistic

There's so much good stuff on that website! On physical health & 'all the things' 🤯❤️‍🩹

26pglt, to random
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On the funding & politics of support for autistic people in Australia.

Cruel and irresponsible myths about the NDIS are treating autistic Australians as villains. This must stop https://www.theguardian.com/australia-news/commentisfree/2023/dec/06/autistic-australians-must-stop-being-treated-as-villains-in-cruel-and-irresponsible-myths-about-the-ndis?CMP=Share_iOSApp_Other

26pglt, to actuallyautistics
@26pglt@mastodon.au avatar

More on autism as identity: this, on what it means for us as partners, as parents, & as living invisibly. 😭😭😭😭😭😭😭❤️‍🩹

From Neuroclastic via @Susan60 @actuallyautistics

https://neuroclastic.com/the-identity-theory-of-autism-values-are-not-opinions-to-autistics-we-are-our-values/

26pglt,
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@farah @GuyDudeman @Susan60 @StrassenKatze @actuallyautistics Thanks Farah, this is really good

26pglt,
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@GuyDudeman @farah @Susan60 @StrassenKatze @actuallyautistics

Hi everyone, thank you all for this discussion. It’s clear that for lots of us for whom self dx has been a way to make sense of ourselves & even find others like us with whom we can create supportive community, to see someone question the validity of our dx can feel very hurtful & triggering. Especially when we have been gaslit about our experiences all our lives. ….

26pglt,
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@GuyDudeman @farah @Susan60 @StrassenKatze @actuallyautistics

….The video Farah posted above was brilliant.

Guy, I felt challenged too by your initial post, but as an undx person who is years into this journey & with a solid career in relevant research behind me I feel very comfortable with my own diagnostic status & am aware of its politics. I read you as coming from a place of goodwill & am interested to hear your view. For me….

26pglt,
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@farah @GuyDudeman @Susan60 @StrassenKatze @actuallyautistics

..being able to see how a situation looks from different points of view is the best gift there is & I am grateful for your input & willingness to listen.

It is very easy for us to hurt each other with antagonism using a medium like this. We all learned that while using Ex. What I love about this platform is that most of us are here with goodwill & we take time to listen.

26pglt,
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@farah @GuyDudeman @Susan60 @StrassenKatze @actuallyautistics

…. We have created a safe space here for nd folk to listen to, learn from & support each other. Nt folk are welcome! Our ground rules are respectful listening, plain speaking & kindness. Am so grateful for this.

26pglt,
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@GuyDudeman @farah @Susan60 @StrassenKatze @actuallyautistics Thanks Guy. This is how we human 💜

26pglt,
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@nellie_m @GuyDudeman @Susan60 @farah @StrassenKatze @actuallyautistics
I love your site Nellie! Thanks for compiling all this in one place. I look forward to the day those quiz tests are updated to correct false assumptions (like that autistic people have no empathy or 'theory of mind' & we are all little white boys obsessed with vehicles) & reflect current research (that shows it is often researchers & treating professionals who demonstrate those deficits, more than we do). And redesigned so the questions mean the same thing to the people answering as they do to those who write them! Some of them make research-methods-nerd me squirm. They could be so much better if written by researchers who are also autistic.

But while they're the best we've got, & these clunky concepts are our , we can use them to find our communities. Yay us

26pglt,
@26pglt@mastodon.au avatar

@nellie_m @GuyDudeman @Susan60 @farah @StrassenKatze @actuallyautistics Thank you!

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