cross-posted from: https://hexbear.net/post/2441630

Definitely check this out.

I'm interested in their repository of data for Autistic people.

Thoughts on the interview?

Listen to it for an hour while you're doing other things.

cross-posted from: https://hexbear.net/post/2438415

Check it out.

Highly recommended podcast, though a bit liberal.

Hosts are well-worth it and have their radical moments.

@ashinadash@hexbear.net

cross-posted from: https://hexbear.net/post/2355483

There's really four parts, but give it a read-through.

who else has the forbidding and incomputable Pile of Mail 💀

mood: currently opening mail 1 week to 4 months old because I know there's a $7 check in it somewhere that'll pay for gas money for my friend to drag my ass around town and to the pot shop

I'm crossposting this widely because every single person with a noise sensitivity who previously tried noise-canceling headphones and found them not useful should know: it might be time to give the technology another shot.

This is a plug for a product. I'm not getting paid for it. I'm actually broke and couchsurfing and unable to work (until now maybe????) due to noise sensitivity, so if this info changes your life, I will put my tip jar in my profile after I post this :)

The story

I got a pair of Sony WH-CH720N for Christmas this year.

I had noise-canceling headphones on my wish list, but very low down, as previously I'd tried a couple pairs, including the expensive and highly-rated Bose QC III, and found them very lacking.

My experience with older headphones: the noise canceling was pretty good, but they caused a pressure sensation on my ears which I can only describe as like having a piece of meat behind saran wrap pressed against my eardrum. They also used to be a lot heavier than the WH-CH720N is. Both these factors made them very hard to wear for any length of time (for me) and greatly limited their usefulness.

So, I put the Sony model on my wish list more because I need a solution for wireless-from-my-laptop Zoom calls and don't have one, and less for the noise canceling feature.

My experience

I'm really impressed with these headphones, especially at the $99 price point.

The noise canceling feature isn't an absolute miracle, but it's very very good, equal or better to the Bose QC III which retailed for more than 3x the price back when it was new.

The weird ear pressure sensation is drastically better than with older noise canceling headphones. It's not nonexistent, and it does tend to flare up with certain bass sounds (like people stomping on hardwood floors), but it's waaaaaaaay better than older models I've tried, to the point where I can wear the Sony model for hours without fatigue from ear pressure.

The WH-CH720N headphones are not durable. They do seem a bit delicate. This is their weak point. But they are very lightweight!! This makes it much easier to wear them for extended periods. If you need to carry them around, maybe there is some kind of headphone case that can be found? I will be looking, and if I find one, will post in the comments on the orig post at lemmy dot ml slash c slash autistic_adults.

So anyway. Hopefully this helps somebody out.

Personally, my noise sensitivity is destroying my life - keeping me penniless and semi-homeless due to inability to work - and getting these 'phones for Christmas changed my entire idea of how noise canceling tech might help me out of this situation, after previous disappointing experiences.

What is this??? I know some of you have experienced it, because on very rare occasion it's come up in the past on other autism discussion groups I've been a part of. Sometimes somebody will make a post about burnout and say something like "the knowledge just fell out of my head" when talking about trying to work/think about complex topics while burnt out.

In my case, once I get too burnt out from overstimulation or nonstop social exposure, I get cognitive effects that last for days or weeks afterwards. In some sense, I get "dumber." But this isn't that, exactly, though I'm sure it's related.

Background, and an example: I do web & software development for work. I also live in a place which is a poor fit for my sensitivities, so I've been in chronic burnout for years, and I'm pushed further into acute high-intensity (as in, I become "lower functioning") burnout a few times a year.

I find that once I pass a certain point in burnout, I get to the point where I need to do a complex task, such as some web dev work, or for another example, filling out a bunch of government forms to keep some critical benefit or another flowing while I figure this all out. And I get inertia. But the inertia feels different than the usual inertia. The only way I can describe it is that it feels like in order to do the task, it's going to "rope in" knowledge of so many related things, that my brain realizes it's going to become overloaded and just sort of freezes up and deadlocks at the prospect.

These are tasks that require a good deal of focus and thinking, but which are well within my ability when I'm able to meet my sensory needs.

Anyway ... just wanted to make a thread for speculation and chatting about this, I guess. What is it? Demand avoidance? Conditioned response? Creepily accurate emotional representation of some kind of actual brain overload failure condition??

This study is unique in considering difficulty initiating tasks of any type in real life settings, and by gathering qualitative data directly from autistic people. Four face-to-face and 2 online (text) focus groups were conducted with 32 autistic adults (19 female, 8 male, and 5 other), aged 23–64 who were able to express their internal experiences in words.

[...] Participants described difficulty starting, stopping and changing activities that was not within their conscious control. While difficulty with planning was common, a subset of participants described a profound impairment in initiating even simple actions more suggestive of a movement disorder. Prompting and compatible activity in the environment promoted action, while mental health difficulties and stress exacerbated difficulties. Inertia had pervasive effects on participants’ day-to-day activities and wellbeing.

As someone facing homelessness myself due to issues beyond my control, I just wanted people to know they're not alone.

These conditions are real, and people's misunderstanding - and willful refusal to understand - wrecks lives.

I hope you can get to a safe place where you can exist in your own skin in peace.

I suspect this probably varies across the entire population to some degree, but for me it feels like my senses and my mind aren't fully "bound together" properly when I wake up, and it takes a while of being conscious, QUIETLY, for them to come together and be functioning right. This process takes far longer if I'm in a state of serious/chronic burnout, up to several hours.

If I skip it and jump directly into activity, things usually stabilize quicker, but in a crappy muddled way, and much of my day can be off, I feel dumber, forget things, lower threshold for confusion/distress from random events, etc.

I've been lurking/participating in forums for people on the spectrum long enough that I see "issues with being perceived" type posts pop up every so often. This is relieving to me because I have issues like that, and they are difficult for anyone who doesn't experience them to understand. So it's nice not to feel alone in that way.

I have noticed a definite pattern after months of reading every one of these posts I came across. I think there are two forms of "my desire not to be perceived is causing me distress / avoidance / ineffective behavior" and would like people's thoughts on this.

1. Some people fear being perceived, or have a great deal of what they very clearly understand as anxiety around being perceived. I have a little of this going on but it's by far the lesser portion of my issues being perceived.*

2. Other people seem to have much more trouble with the cognitive load of being perceived. This is the much bigger problem for me. Once another human being is in the same space, some part of me becomes continuously aware of their presence, and devotes a non-negligible amount of energy & mental bandwidth processing ... things ... related to that. It's often enough to make me less effective at what I'm trying to do. This can eventually lead to anxiety, but I'm fairly sure the primary emotion here is not anxiety but... avoidance? exhaustion? at the processing demand required to exist in the same space with others. It is also a much larger issue when I am already burnt out or tired. But the end result is the same as if the culprit were simply "anxiety:" I'll avoid doing things I need to do if the cost seems too much.

I think part of the "cognitive load" issue I just described is in fact directly related to my executive dysfunction. Human beings doing things nearby are one of the most distracting stimuli to me (I'm diagnosed ADHD as well). So if I'm trying to do a task, and somebody shows up nearby, even if they aren't interacting with me, it's quite possible for my ability to perform at the task to get noticeably worse once they are there.

As you can imagine, experiencing this enough times leads to emotions, which leads to a "complex" as they liked to call it in the 70s. In my case, I'm fully convinced there are both biological reasons for my bullshit - after all, I get mesmerized by televisions too, something is clearly going on - and conditioned responses that aren't helpful. Would be nice if I could keep a shrink long enough to get some CBT for the latter, but that's not how it works in the USA if you're poor.

Anyway I would love to hear any other thoughts or experiences having to do with Being Perceived as it applies to us!

...

* If you're the type of person who occasionally hurries to get around a corner before someone walking a ways behind you can round their corner and continue having you in sight, or if you're the type of person who will occasionally beat a hasty retreat when someone is arriving who has nothing to do with you, you probably understand this type of perception anxiety to some degree.

I encourage anyone who wants to see more traffic, and has the resources to do so, to create a throwaway account and confess some personal shit on here!! chances are if you do, somebody else out there will end up feeling less alone. that's exactly what I'm doing 😃

before realizing I'm on the spectrum I've been to some support groups for other conditions as well as going thru DBT, and one thing I realized is that sometimes it's cool to have a space to just put your stuff on the table, and everybody else has done so to some extent as well, and you can approach each other as human beings with less pretense because they already know your stuff unlike everyone in "real life" who you're trying to impress.

anyway. try it out! and then ghost the account in a few days/weeks/months, or don't.

but we all know adults on the spectrum have basically no resources. getting some traffic going here could turn this into one.

Self-determination Theory (SDT) is… — a model, a macro theory, of human motivation.

Interesting article (granted with perhaps a bit of academic idealism) with a number of interesting links branching off.

Time to dust this one off again:

Let's say your husband or wife has a friend who will be coming to your city for two weeks on business. This friend writes to you and your spouse, asking if you can put him up while he's in town. Has this person committed a gross violation of etiquette? Whether you answer yes or no may speak to whether you're an Asker or a Guesser--the two personality types described in a three-year-old Web comment that has lately taken on a second life as a full-on blog meme.

(not my blog, just came across it)

Normally I tend to write massive walls of text, but it's Tuesday morning, I just woke up, and the drunks I live with - my friends, who give me this place to stay, as I ended up here after losing my home due to autistic burnout - are already partying. And I'm just so fucking sick of it. The nonstop chaos. Adults in their 30s, 40s, and even their parents in their 60s and 70s acting like idiot frat boys. The inability to maintain a sleep cycle, or ever know who the fuck will be in the house. Not knowing if the bathroom was suddenly "cleaned" at 2am due to a puke scene like something out of The Exorcist, or whether it was just because some drunk got a wild hair and decided to remove all the towels in the middle of the night.

There is so much more, of course, including the usual NT bullshit of blaming me for my problems when in reality, I know what I need to do in order to be healthy, and I'm consistently blocked from it by people who have devoted their lives to substance abuse.

The worst part of it all is watching their kids get the short end, because their parents are more concerned with being drunk than with being present. I love those kids. And there's very little I can do about it - doubly so because their drunk parents leave me so fucking burned out that I just don't have the energy.

As for me personally, I've been stuck like this for four years. I've almost built a way out - slowly and painfully collected all the gear so I can work from my car (I do remote tech, but am completely unable to think at the house). My car is so close to exploding in a million pieces it's not even funny, so that's the next challenge. All the gear works, but if that car dies I'm right back to square one with no safety valve to get the fuck away from these people.

I guess this became a wall of text, but my main intent was to kick off a vent thread for anyone who's been in this situation.

Since I found out about my autism in 2009, at age 40, I struggled to find older people who I could relate to that had mental disorders.

I also feel like late-diagnosed autism is not well understood by the medical community. I keep witnessing more and more adults who are diagnosed even at age 60 (who work in science news reporting, of all fields!).

With autism, age is so focused on children in the medical research funding. But schizophrenia learning is often focused on adults: "symptoms generally start in the mid- to late 20s, though it can start later, up to the mid-30s. Schizophrenia is considered early onset when it starts before the age of 18."

It's an interesting time period in autism right now. Since I became active on the topic in 2009, I keep hearing story after story on social media about people not getting diagnosed with autism until age 40, 50, etc. Again: diagnosed with autism even at age 60

Terry A Davis and I have a lot in common: https://en.wikipedia.org/wiki/Terry_A._Davis

1. I was born in 1969 too. Just a couple months older.

2. I learned programming on a Commodore 64 and published social media software.

3. He worked at "Ticketmaster as a programmer for VAX machines" - I had a VAX/VMS system at my high school and got a job with a pentagon contractor based on them also having a VAX system at age 16.

4. I became an expert in operating systems and wrote books about them in the early 1990's.

5. I have traveled and lived as a digital nomad since 1999, I've lived all over the USA states he was spending time in.

After 2017, he struggled with periods of homelessness and incarceration. In 2018, he was struck by a train and died at the age of 48.

I have never had hallucinations of any kind. And his interest in religion strikes me as someone who would have really benefited from a 1970 lecture by Joseph Campbell: Joseph Campbell - Inward Journey: Schizophrenia and Mythology

I've lived in the Middle East for years, lived in several Islamic nations, experienced different views of religion. Dr. John Weir Perry is a reference. As Joseph Campbell is pointing out in that lecture, religion itself is a form of Schizophrenia. I think Terry A Davis is exactly the kind of person who would have benefited from having that knowledge, and even translating it to Arizona (where he lived) areas of mythology - like Navajo teaching. I do not subscribe to any one religion as "correct" any more than films, songs, fiction. I think James Joyce combined with Marshall McLuhan and Neil Postman are an excellent set of teachers about how to understand mythology (religion) stories and not get caught up in the specifics of Middle East interpretations. The Navajo Pollen Path I consider better than what I've seen in most Bible/Torah/Quran teaching.

Terry A Davis's visions of inner voices also fits a lot with the fiction and meta writings of Phillip K. Dick. PKD was very good with metaphors and I think well understood what Joseph Campbell was saying about the psychology of religion. It would not surprise me at all if PKD knew of the 1970 lecture by Campbell in his lifetime.

Autism brain can get latched on technical issues and have no awareness of just how much people with different attitudes about art and entertainment, like Rock Stars making music, do things different.

I've had to think of analogies of the situation. Like criticizing the maintenance cost or oil leak of an exotic sports car. And not realizing it's all about the 'hand crafted' nature and not about practicality.

On the Reddit adult autism community people have shared experiences about drinking. For some autistic people it helps, others say it causes them problems.

I haven't drank heavy since New Years, but I had to drink to reset my brain over my social interpretation mistake.

I just got too worked up over the style and fashion of a art-centered creative project. And I really regret how I didn't realize the social situation. I really regret that I worried about a problem taking so long to be fixed when I haven't found a single other person who cares about it. Stupid brain. Social things like this can be so confusing some times, I didn't even realize it.

Street vendor food. wildly different social conversions and standards people have I don't have troubles with those, but "Rock Star" culture in business/workplace and music/entertainment/art cultures can confuse me. I get bewildered why people would let Harvey Weinstein get away with so much for so many years. That kind of "Rock Star" culture and how people have different standards for what they consider normal.... bewildering. Rock Star politicians, I've never seen the appeal of wearing clothing with a politician on it. I have such a hard time seeing these situations, my mind doesn't go there. But I can be that way about actual rock stars, art, so the problem I am having I am just shifting my mind to interpret the whole situation that way.

But I feel so dumb and stupid for not recognizing it earlier.

"Nobody realizes that some people expend tremendous energy merely to be normal." - Blanche Balain, quoted/popularized by Albert Camus around September 1, 1943