@nellie_m@autisticpri.de cover
@nellie_m@autisticpri.de avatar

nellie_m

@[email protected]

It almost feels a bit exotic but - no, I never had an account on that “birdsite”, even though I like birds. Simply came here and loved it! When the server I first signed up on was shut down, I set up this little instance of one.
Chicken keeper, dog lover, photo enthusiast without decent camera, would-be-smallholder-if-only-I-had-more-time, ex-beekeeper, seed saver, writer, publisher. Curious, enthusiastic, believe in the power of kindness.
#nelliepic

-> June 18th is Autistic Pride Day

This profile is from a federated server and may be incomplete. View on remote instance

pathfinder , to ActuallyAutistic group
@pathfinder@beige.party avatar

@actuallyautistic

It's day.

Pride, is both a celebration and an affirmation of our existence. It is the latter for me that is all important. As someone who very late in life realised I was autistic, I had spent a lifetime knowing only that I was different, but not how. It was a hole in me that I couldn't fill, a sense of something missing, a lack that always felt more about how broken I was than anything. As a consequence it became something to hide, to mask and to be ashamed of. It was my dirty, dark secret and the core of my existence. The knowledge that no matter what, I was wrong and always would be.

Realising I was autistic, filled that hole. It taught me to see the difference as, if not always positive, at least natural and normal. I was never broken, I was just trying to function in the world in the way that was right for me. A world, that in so many ways, was hostile to that, unforgiving about difference and those who stood out too far. I had, in fact, been simply trying my best with the tools that I had, the tools that came naturally to me, even if no one else ever saw that.

Having a day to remember this. To remember the past and the pain and the blind struggle. To remember how far I've come and how much I've learnt and have yet to learn (because finally I can). To be able to stand out and say "yes, I am", is important not just for us, but others walking this path. For too long being autistic was a dark and terrible secret. For too long its truth has been hidden behind ignorance and misinformation. That is what days like this are for and why they are so important. To show the world that autism and being autistic, is nothing to hide and nothing to fear. Happy pride day everyone.


nellie_m ,
@nellie_m@autisticpri.de avatar

@DoctorDisco @pathfinder @actuallyautistic

Quentin Crisp once said something like (paraphrasing): you can’t be proud of being gay as if it were an achievement because it’s not something you’ve done - but you can be proud of not being ashamed of being gay.

And that’s how I understand all the pride days.

chevalier26 , to ActuallyAutistic group
@chevalier26@mastodon.social avatar

@actuallyautistic How do y’all deal with people who say that autism doesn’t even exist, and that it “suddenly” cropped up over the past few generations because people have been “mentally coddled”? Somewhat in the same vein as “there is a diagnosis epidemic” but much more extreme.

nellie_m ,
@nellie_m@autisticpri.de avatar

@chevalier26 @actuallyautistic

how do you deal with people who believe that the earth is flat?

I guess that’s a case of „shrug and move on“.

Some people just know everything, and arguing is simply a waste of precious life time.

chevalier26 , to ActuallyAutistic group
@chevalier26@mastodon.social avatar

@actuallyautistic I’m in shock right now and feel like I could burst into tears…my parents and I are out at lunch, and my mom just asked me out of the blue, “what gives you joy?” And I said, “why are you asking me that?” She essentially responded by telling me that to her, I showed no evidence that I had any joy in my life, and that there is nothing that makes me happy.

I’m at a loss for words.

nellie_m ,
@nellie_m@autisticpri.de avatar

@adelinej @chevalier26

Apologies for going somewhat off-topic, but if someone posts to the @actuallyautistic group, please don’t remove that reference in your reply.

Groups actively push replies to the accounts following them. It’s the only way for small instances (like mine) to get to see comments by accounts they don’t follow, and maybe their server never even federated with yet.

I learn so much from these threads and would like not to miss any of your thoughts!💛

nellie_m ,
@nellie_m@autisticpri.de avatar

@chevalier26 @james @actuallyautistic

My mum is allistic, my dad is autistic. They’ve been together for a long time, and each one has shaped the other partner’s behaviour in the relationship.

They’re both different people if I meet them 1:1.

(I should add they’re in their 80s and have no clue what autism is, and I’m not going to break it to them. It doesn’t help that they both grew up in dysfunctional families and were heavily traumatised as kids.)

nellie_m ,
@nellie_m@autisticpri.de avatar

@Susan60 @chevalier26 @james @actuallyautistic

I don’t think I’ve ever seen them happy together.

Coming from dysfunctional families, both traumatised from growing up between bombings, starvation and old-school educational ideas, all they wanted was peace and a happy family life, but they never learned how to do that.

So they couldn’t give it to us kids, either. If you don’t get to know healthy, you can’t return to it even when conditions become more favourable.

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

yes, all of this is very much okay of course. I sometimes even make replies a DM for that reason.

1/4

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

And as I’m on a single user instance, I sit pretty much on a desert island. I’ll see your post if I follow you, but very often not a single reply.

Groups are a great way to let everyone in a conversation read all the replies. Just be aware of that 🙂 and by all means, use visibility options 💛

4/4

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

Mastodon does not backfill threads. Unless a comment already reached your server, you’ll never get to see it. (this is why so often 10 people give the same answer - they never saw the other 9!)

3/4

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

However, I do feel that a lot of people don’t understand that Mastodon doesn’t work like you describe:

“I’m usually fine if people find my comment via the original post’s comment list”

My point was: they won’t, unless at least 1 person on their server follows that account and so that server “knows” about it.

Please read that again.
2/4

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

Here’s an example to illustrate this. A post from a pretty popular account with more than 7k followers. One screenshot shows the original page in the browser. I’m not logged in and can’t interact, but I can see all public and unlisted comments. There are a fair few, and it’s got lots of boosts and favs.

The other shows the comments I can see from my account: exactly zero. My server knows about 1 boost, no favs.

as described in post

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

are valid, and using visibility options is a good thing.

I also didn’t mean you specifically in my explanation. What I do hope is that maybe it was useful for some in understanding the side effects of removing the group tag.

The group only boosts to members. I often only fav and don’t boost group posts as that would reach all my followers outside of the group, too, and they’re often too personal for that.

nellie_m ,
@nellie_m@autisticpri.de avatar

@AnAutieAtUni @adelinej @chevalier26 @actuallyautistic

Kudos to you for using this manual workaround for this flaw of Mastodon’s, it really wasn’t designed for small servers. Rochko himself opened a github issue in 2016 and it hasn’t been worked on since, in spite of people offering him ideas and time.

I hope it didn’t come off as disrespectful and oppressive when I asked to please keep the tag. And I did say all those reasons

1/2

catswhocode , to ActuallyAutistic group
@catswhocode@mastodon.art avatar

@actuallyautistic Do you ever question whether or not you're autistic? I do in part because some of the traits I have can also be attributed to my brain injury, so I don't know if it's one or both

nellie_m ,
@nellie_m@autisticpri.de avatar

@pathfinder @pa @catswhocode @actuallyautistic

I don’t fully agree with the „never ends“ 😉 but for the first few years, I certainly had impostor syndrome, too. It’s so typical, it should be included in the list, at least for late discovered autistics.

And I won’t ever get tired of sharing Alice Watson’s fabulous collection of resources.

https://codeberg.org/alicewatson/asd-self-dx/src/branch/main

spika , to ActuallyAutistic group
@spika@neurodifferent.me avatar

How do you guys handle friends who have the sort of sense of humor where they "play fight" over trivial things for fun?

I find this sooooo triggering because I can't tell when good fun turns into abuse and controlling behavior so any hint of it even in good fun is really upsetting.

@actuallyautistic

nellie_m ,
@nellie_m@autisticpri.de avatar

@spika @actuallyautistic @pathfinder

I hate it.

It’s testing limits. Add some alcohol and you may very well witness how bar fights evolve.

I’ve seen it mostly with males and I don’t know whether it’s a great ape species thing (bonobo males do a lot of 1:1 aggression, while chimpanzee males form gangs) or cultural. Probably both, and an internalised competitive patriarchal structure certainly doesn’t help.

I avoid such company.

melindrea , to ActuallyAutistic group
@melindrea@beige.party avatar

Reading wikipedia on autism for Reasons (tm).

I don't get it. Why is it so important that we don't stim? Like, there are some that are contextually inappropriate (loud noises when it might disturb others, for instance), but outside of those few things ... what's the problem with hand flapping, body wiggling, hair twirling, vocalizing in repetitive ways when it's not distracting/disturbing, etc, etc, etc?

Bah, humbug >.< @actuallyautistic

nellie_m ,
@nellie_m@autisticpri.de avatar

@pathfinder @melindrea @actuallyautistic

I think small talk is an NT stim. It makes them feel better. Alleviates their unease. Social contact like that boosts their brain opioids - they’re basically what makes us feel loved / loving.

Weather talk (or what the Buddha called „well gossip“) is meaningless to us; maybe because our brain opioid levels don’t go down when we’re alone.

Zumbador , to ActuallyAutistic group
@Zumbador@mefi.social avatar

@actuallyautistic
I'm visiting family, and wow am I deep in autistic denial territory.

Some of my younger relatives have approached me, asking about neurodivergence because I've been so open about my experience as a late realised autistic person. They're wondering about themselves and their parents.

The older people though, are unable to have that conversation. There are jokey, sidelong half acknowledgements that "there might be something going on" with them, but otherwise it's High Masking At All Times.

What I find difficult to deal with is the rather toxic judgemental attitudes.

So-and-so relative is "so picky about his food, he thinks it makes him important" or "how ridiculous, he doesn't like the too bright light in the bathroom" and all the while I can see them struggling to deal with the exact same difficulties they're judging in others.

It's so ingrained, I don't know if there's a way for them to find self acceptance.

nellie_m ,
@nellie_m@autisticpri.de avatar

@JoBlakely @punishmenthurts @axnxcamr @Zumbador @actuallyautistic

SAME.

I never doubted myself. I’ve often been confused why what I think is obvious doesn’t work with most people. I still don’t really get that. But I never wanted to be that way. Dr. Tony Atwood said about neurotypical people: „They are irrational! They are emotional!” And I realised that before discovering I’m autistic I spent a lot of my energy trying…

1/2

nellie_m ,
@nellie_m@autisticpri.de avatar

@JoBlakely @punishmenthurts @axnxcamr @Zumbador @actuallyautistic

…to change that in the people around me. As if giving them facts and good arguments would make them more rational. I see now that that’s impossible, and it’s sad to give up hope but also much less exhausting and frustrating to not have to try so hard anymore.

2/2

nellie_m ,
@nellie_m@autisticpri.de avatar

@Zumbador @dpnash @actuallyautistic

I was born in the sixties, and until I was 48 I basically thought autism meant people who sit in a corner, staring blankly into space, rocking mechanically and with no capacity to communicate at all. Who on being spoken to wouldn’t even show a sign that they noticed your presence. Probably drooling, too!

So my journey of self-discovery was quite a trip, but today I think of autism as a badge of honour that says „not broken“ and I wear it with pride 💛

Richard_Littler , to ActuallyAutistic group
@Richard_Littler@mastodon.social avatar

It's summertime and, as is the tradition, all my neighbours' kids are outside screaming/shrieking relentlessly in a pitch that only dogs (and, as it turns out, autistics) can hear.
'Tis the season of the almighty noise-cancelling headphone.


@actuallyautistic

nellie_m ,
@nellie_m@autisticpri.de avatar

@Richard_Littler @actuallyautistic

Plus, it’s National Lawn Mower Day. Like every other Saturday.

catswhocode , to ActuallyAutistic group
@catswhocode@mastodon.art avatar

@actuallyautistic I'm curious, has anyone ever interpreted your infodumping as bragging? That happened to me on here a while ago - I was just talking about some trips I had taken or something, and the other person thought I was showing off 🙄 I think they were neurotypical.

nellie_m ,
@nellie_m@autisticpri.de avatar

@Zumbador @miaoue @catswhocode @actuallyautistic

So familiar.

When I started reading about Asperger’s 15 years ago they still said autistic kids had “Little Professor Syndrome”. Which is both true and unkind.

It’s so odd that most people past a certain age seem to lose all curiosity and refuse to learn new things. Reject all things new and unfamiliar.

And then they shame us for staying interested in the wonders of the world, and call it a “delayed development”.

nellie_m , to ActuallyAutistic group
@nellie_m@autisticpri.de avatar

@actuallyautistic

PSA: This

🤗

very obviously is the „so happy I’m flapping hands“ emoji 🤗

😁

Zumbador , to ActuallyAutistic group
@Zumbador@mefi.social avatar

@actuallyautistic

Here's something that causes friction between me and my family.

Someone asks me to make a decision about something I don't have a strong preference, but they want me to have a preference.

"do you want x or y? "

Saying "I don't care" comes across as rude, and even softening it as "I don't really have a preference" or turning it back to them by saying "what do you think?" isn't appreciated. They want me to care.

I understand that they want me to choose so they don't have to do that emotional labour. That's fair. But often when I do choose (at random), they try to change my mind, and then I'm back to square one because I don't really care, and I don't want to lie!

A honest answer would be "I'm depressed, I don't want to exist. Putting on a polite face is taking up all my effort, expecting me to actually care is beyond my capacity"

But that's too heavy for most interactions.

I'm not sure what I'm asking for here, just writing it out.

nellie_m ,
@nellie_m@autisticpri.de avatar

@Zumbador @alicemcalicepants @roknrol @actuallyautistic

humans are way too complicated to live with.

Which is why I loved having a dog companion, and now she’s gone and I can no longer afford it, I’ll rather stay by myself.

nellie_m ,
@nellie_m@autisticpri.de avatar

@dl2jml @Zumbador @actuallyautistic

The myth that autistic people lack empathy goes back to Simon Baron-Cohen, has done a lot of damage and has also been disproven.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6959478/

nellie_m ,
@nellie_m@autisticpri.de avatar

@dl2jml @Zumbador @actuallyautistic

that’s a good point.

nellie_m ,
@nellie_m@autisticpri.de avatar

@dl2jml @Zumbador @actuallyautistic

You’re right in that there are cultural differences between autistics and non-autistics, but it goes both ways.

It’s called the „Double Empathy Problem“.

Turns out, in all-autistic settings, we don’t find relating more difficult than allistics in all-allistic settings 🙂

nellie_m ,
@nellie_m@autisticpri.de avatar

@Tooden @Zumbador @alicemcalicepants @roknrol @actuallyautistic

Thank you 💛

The average life expectancy for her breed is less than ten years, and she lived to be fourteen and a bit, so I’m really very grateful for that. All good. My dogs live on in my heart and that’s something I can’t ever lose 💛

nellie_m ,
@nellie_m@autisticpri.de avatar

@Zumbador @actuallyautistic

Did you ever read Kate Fox, “Watching the English”?

It’s very entertaining, and very enlightening.

And I think your answer might be right there in your question: seems it’s a cultural thing, only you’re becoming aware of it.

nellie_m ,
@nellie_m@autisticpri.de avatar

@Zumbador @actuallyautistic

there are some interesting passages about people who live in this culture but are from a different background. How they’re culturally “bilingual” and can almost switch personalities but being fluent in both they know both are sort of a game.

It’s such a great book, like a manual for the hidden rules and assumptions within the English culture that are usually taken for granted, and I truly wish she’d write one for all the other countries 🙂

JeremyMallin , to ActuallyAutistic group
@JeremyMallin@autistics.life avatar

Does anyone ever consider learning sign language not because they can't speak, but just because sometimes they don't want to? Or don't feel up to it?
@actuallyautistic

nellie_m ,
@nellie_m@autisticpri.de avatar

@JeremyMallin @actuallyautistic @pathfinder

I wanted to study it at one time because I was intrigued by how powerful it is. It has a pretty different grammar, so for deaf people who grew up signing, ours is in fact a foreign language.

Spoken language is linear. Everything you describe can only be lined up one after the other.

Sign language can describe several things at once. In space and time, so it’s four-dimensional. Not an easy thing to learn.

punishmenthurts , to ActuallyAutistic group
@punishmenthurts@neurodifferent.me avatar


@actuallyautistic
.
I don’t know about you, but my self diagnosis was anything but fast or easy. It was sixty year goddam treasure hunt where anyone who knew or could have known anything made a point of keeping it a secret.
.
No matter the troubles I was having, the messaging from family (who absolutely all knew) and doctors and psychologists was all NT conformism:You are Normal. We are All the Same.
.
Self diagnosis is about as easy as a salmon finding its breeding spot after a thousand miles of white water. It’s an against all odds kind of deal, at least for us olds.
.
Neurotypes are the biggest secret in the world, because We are All the Same, they say. They don’t like self diagnosis because it’s when we win the game of Hide and Seek, we are Kicking the Can when we self discover, winning the game.
.
😈❤️

nellie_m ,
@nellie_m@autisticpri.de avatar

@punishmenthurts @actuallyautistic @pathfinder

yes, self-realising that I’m autistic was quite the trip for me, too.

But I’m glad I took it.

Because the best place to arrive at is home.

✨💛✨

LehtoriTuomo , to ActuallyAutistic group
@LehtoriTuomo@mementomori.social avatar

I've been trying to understand what it means that an autistic brain is bombarded with so much information. We spent some time at our summer cottage and I think I got some insight in this.

Instead of seeing the lake in front of my eyes, everywhere I looked I saw a detail. Its size would vary but it would still be a detail. A swan there, its partner there, no leaves on that tree yet, what a cool pattern on the small waves, what does it look like when I move my eyes this way, or that way, a car on the opposite shore, the shadow of the tree, I wonder what seagulls those are etc. A new detail with every single glance.

At the same time my attention tried to keep track of the dog and listened to birds singing and bumblebees flying around.

Now I wonder what it feels like just to see the lake.

@actuallyautistic

nellie_m ,
@nellie_m@autisticpri.de avatar

@melindrea @roknrol @LehtoriTuomo @actuallyautistic

I think both ways make sense, just in different situations.

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