Autistic Twitter makes me doubt I'm autistic

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firemonkey
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20 Oct 2022, 7:19 am

I think it's the number of people you get there doing things like getting degrees,PhDs, book deals, great jobs etc while supposedly having incredibly severe sensory and other autistic symptoms at the same time. I get the impression from there that the very smallest of things can cause a heightened sensory reaction . I struggle to identify with a lot of that. I don't have extreme sensory reactions to the smallest of things.

I don't think I've ever experienced 'burn out' apart from maybe the period that lead to my first psych admission. That might be explained though by the fact I'm quite avoidant. I live a rather low level lifestyle. The aim being to minimise stress ; stress being my psychological equivalent of Superman's kryptonite. My usual day involves eating,drinking, internet and TV. That sums up over 90% of the time I'm awake.

Then there's masking. I'll start by admitting I have a far less than expert level of knowledge re what is 'masking'. My simple minded description of it would be 'behaving in a way that makes me seem less autistic'. For better or for worse WYSIWYG with me. I think the nearest I get to it bis 'I'd prefer x ,but accept y if it's more convenient/less hassle for the other person or persons.



klanka
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20 Oct 2022, 9:04 am

Those people seem to have a lesser degree of autism than the average



lostonearth35
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20 Oct 2022, 9:20 am

I'm high-masking autistic, and I spend 98% of my day on the internet, playing video games on my Switch, drawing or doodling, or working on arts and crafts. I'm lucky I don't have problems with some everyday adult things like doing laundry, taking out the garbage, or cooking my own meals. But then again there a lot of adult NTs who don't even bother doing that.



Edna3362
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20 Oct 2022, 9:42 am

They sound privileged than "High functioning" in my case.


By privileged, they can 'afford' to have said sensitivities and whatever additional issues while achieving said achievements (additional privacy and safe spaces, having healthcare in general, any interventions involved and are available)

And said achievements also happen because of the same privilege (PhDs/courses are expensive, accessing even free ones requires access to computers and the internet, economic health means better employment opportunities and more compensated work, etc.)

I can be less than "severe" or even be flat out NT, and work as trice as hard and still wouldn't achieve as much because of being too bound to the same location (can't abandon my mom alone), same cultures (crab mentality) and same dynamics (ones that do not allow growth). Even moving is a privilege.


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firemonkey
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20 Oct 2022, 9:53 am

lostonearth35 wrote:
I'm high-masking autistic, and I spend 98% of my day on the internet, playing video games on my Switch, drawing or doodling, or working on arts and crafts. I'm lucky I don't have problems with some everyday adult things like doing laundry, taking out the garbage, or cooking my own meals. But then again there a lot of adult NTs who don't even bother doing that.


I wish I could do arts and crafts, including drawing, but I have zero ability at such things. It would be pushing the limits of my ability to say I draw as well as a 7 year old.



firemonkey
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20 Oct 2022, 10:36 am

I'm very much bound to where I am, because of a poor sense of direction and fear of getting lost. I have what I call my 'safe zone'. Even that's been drastically reduced, as a result of the falls I had and lower back pain. There just seems to be this insurmountable gap between the people I mentioned and me. Are they 'privileged'? To be honest ,I don't know. Does the fact quite a few have made radio and TV appearances to talk about disability suggest they are?

I'm definitely not one of the in-crowd there. Not part of the circle jerk of mutual backslapping and admiration.There's also a fanaticism re attitudes towards those who are NT. Some ,without a doubt, are the autistic equivalent of political firebrands.



rse92
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20 Oct 2022, 3:28 pm

I have been pretty successful, professionally and in other aspects. i also mask like hell.

Over a ten year period I lost everything, and i have been to hell and back. Much it was caused or exacerbated by my (undiagnosed) autism and its comorbidities. I have earned everything back in the last nine years, and it's only because I didn't quit and didn't accept being down and out for the rest of my days.

It's a struggle for all autistic people.



Merboy
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20 Oct 2022, 4:10 pm

I went back into education in my 30s and did quite well, although I didn't have a job or any other responsibilities and struggled with my MH, including having an eating disorder. But I also find some of the autistic people on twitter hard to relate to. I got my autism diagnosis a few years ago and I still haven't managed to work, also find it difficult to connect to people on a deeper level.

For me seeing autistics that manage to work, have relationships and children can be quite difficult sometimes, but I'm learning accept that we're all different. Maybe autistics who are popular on twitter tend to be more outgoing? I actually find Wrong Planet a bit more relatable.


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firemonkey
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20 Oct 2022, 6:14 pm

WP is much more relatable for me.
As for further education ..... I've been very avoidant when it comes to that i.e I have, over the years, brushed aside more than a few suggestions to do a college course. My care coordinator put that down to 'bullying related trauma' when I recently opened up about my experiences of being bullied.

Work (I've never had a paid job) has always been a thorny issue. I'm definitely more brain than brawn, but not up to coping with the stress of a high powered , competitive, white collar job. On the other hand I don't have the manual and practical skills to do well at a blue collar job. I'm basically totally 'f***** both ways.



kraftiekortie
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20 Oct 2022, 6:35 pm

I have a job. Not much sensory sensitivity.

But I’m not a professional—I’m an office clerk. I’m not a “high-flyer.”

I bet some of those people who post in “autistic Reddit” are not autistic at all.



Mountain Goat
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20 Oct 2022, 7:25 pm

Picture a computer, and lets say you know nothing about the electronics of it. You cut through just one or maybe two of the circuit board tracks which act like wires. You do not know what will work and what will not work. You go to switch it on. All may seem to work ok until you go to do a specific task that required the electrical circuit you have just cut to perform correctly, but now the computer can't do that task.

Now picture the human brain while it is growing (Developing). As it grows and develops, one specific brain area is like that computer circuit board that has been cut, so if the humans development system notices this in time, it compensates its growth to other areas of the brain instead so in one small area the brain may not function but in other areas it has amplified function (Hyper sensitivity) or it develops a very high IQ in that specific area as the growth went that way instead of developing the area that did not work.
This is autism, and it plays out in a great many ways.

To some extent when people can say "We are all autistic" it maybe true in one way because it is almost impossible to find anyone who is 100% autistic or 100% allistic because those extremes either way are so rare that on the one side 100% autistic will have no brain function whatsoever because all brain connections would not make it where the person would be dead at birth, and to the other extreme, we have someone whos brain is so perfectly formed that every single brain connection is there and they can do everything without any restrictions. Even the most allistic person we may meet will have something somewhere they may not be able to do even if it is a very minor thing indeed!

BUT what we class as autism, is that the individual has enough traits that causes them to have difficulty in their lives or their perception of life will be significently different due to their traits.
These traits are either caused by the missing brain connections where when the individual tries to do something requiring that connection and their brain shuts down (Think of one of the old computers that has a virus or an issue so if one tries to do something it says "Windows is shutting down" right when one was trying to do something!) Or the computer may go crazy and start repeatedly printing out random stuff at flat out speed which would be like a meltdown.

Now I mentioned that according to what I found out that even most NT's one can find the odd trait BUT it would usually be a mild trait and before one assumes that all those who have not been assessed are Allistic (Some say NT's though allistic is a better term for those who are not on the spectrum), remember that thr majority of the population has not been assessed, and only those on the spectrum who were not able to mask their traits effectively tended to be put forwards for assessment unless they happened to find someone who knew a bit about autism and masking who was able to put them forwards to be assessed. Most who mask well only find out later in life when they crash as masking is like running ones brain doing more than one task at a time continually which is why they tend to mentally burnout and crash.
Those who don't mask and are on the spectrum are a lot easier to pick out from a young age.
A study I heard of where an expert psycologyst went right around the world with the help of local assessors, assessed large study groups of random people and found to their surprize that wherever they went that they had a constant 6% of the people they assessed were found to be classed as being autistic.
This goes to show that at least 4% may never know and also shows how many mask so are never found out.

But regardless of this, the spectrum itself is so broad in its traits that indicate that someone is on the spectrum, that there is no one common denominating trait that all those on the spectrum have. Other conditions are easier to diagnose as they share a common condition or trait, but autism by nature is a condition that does not do this, so the assessment is based upon finding traits and if there are enough traits, OR if some traits significently make ones life difficult in some way, it indicates to the assessor that the person has issues due to autism. It does take someone that knows what they are looking for and a very careful look at the results of the assessment before one is classed as being autistic.
There is also a term known as BAP or broad autism phenominum which is where the individual shows many traits but not quite enough for them to be classed as autistic so they sit right in the middle between having autism and not having autism. These people can be in a difficult situation where they may need help but may not get the help they need.

Those on the spectrum obviously fall into different catagories, as some need expert daily help. Others can manage with no help and can live good lives with very little assistance other than a brief check on rare occasions if needed to see that all is ok.

Like I mentioned before in the computer example, where a missing brain connection can cause one individual significent issues, while cause another only rare occasional issues depending on which connection or connections do not make it.



IsabellaLinton
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20 Oct 2022, 8:58 pm

Firemonkey,

I remember your posts when you were waiting for ASD diagnosis and you definitely seemed to meet the criteria. That was confirmed in your assessment. I think the reason you might not "feel it" as acutely as others describe is because you are home all day not having to deal with the sensory-social aspects of working full-time or fending for yourself in society. Your home environment is tailored to your needs as best as possible, which can be considered a type of accommodation. You don't have to deal with other people's environments or other people's routines and expectations. When you do go out you have the aid and support of your step daughter who acts as an advocate and helps you with difficult transitions.

I can feel the same way when I'm home, but when I step foot outside on my own it's a whole different story.



firemonkey
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20 Oct 2022, 10:02 pm

I can't disagree with what you've said.I fully admit that I've been sheltered somewhat from life's storms.



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21 Oct 2022, 9:15 am

Twitter -- and other social media platforms -- are intrinsically biased in favor of successful Internet personalities/influencers and their fans. Most interaction on Twitter, and on most other major social media platforms, takes place in comment threads on posts by successful Internet personalities.

Obviously, other factors being equal, successful autistic Internet personalities are likely to be among the least disabled autistic people (although there are a few exceptions to this).

The autistic community on Twitter, such as it is, revolves around the Twitter accounts of successful autistic Internet personalities. Given Twitter's structure and algorithms, it simply cannot be any other way.

This is very different from old-fashioned message boards like Wrong Planet, where anyone capable of reading and typing, no matter how disabled otherwise, can start a thread that other people will see and comment on if the thread is interesting enough. Here on Wrong Planet, the popularity of an individual poster plays no intrinsic structural, algorithmic role.

The autistic community in general, what little we have of one, revolves too much around cliques of successful Internet personalities.

This is one of the reasons why I keep saying that the autistic community needs to become more organized. (See Longterm visions for the autistic community.) If we were more organized, the community's leadership would be more accountable, and people other than just the successful Internet personalities would have more of a voice.


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21 Oct 2022, 11:05 am

firemonkey wrote:
I think it's the number of people you get there doing things like getting degrees,PhDs, book deals, great jobs etc while supposedly having incredibly severe sensory and other autistic symptoms at the same time. I get the impression from there that the very smallest of things can cause a heightened sensory reaction. I struggle to identify with a lot of that. I don't have extreme sensory reactions to the smallest of things.


Some people do have sensory issues and some people don't. That in and of itself doesn't mean your or their diagnoses are any less valid. I do have some sensory issues, but they are not debilitating for me. That's just me though. Some people have it a lot worse. I'm also an autistic person with a PhD. It's not like having a PhD is a pure reflection of intelligence though. It's more like a threshold measure saying that a person can work really hard and long on some very specific area of research. It makes sense to me that special interests play into this pretty well. I'm not the only autistic person in my field.

firemonkey wrote:
I don't think I've ever experienced 'burn out' apart from maybe the period that lead to my first psych admission. That might be explained though by the fact I'm quite avoidant. I live a rather low level lifestyle. The aim being to minimise stress; stress being my psychological equivalent of Superman's kryptonite. My usual day involves eating,drinking, internet and TV. That sums up over 90% of the time I'm awake.


I mean, that sounds like a good life to me. Honestly, if I was offered that as an option, I would have taken it. When I started my journey into academia though I was fresh out of a very unstable living situation. The people in my life who had supported me up until age 19 were suddenly unable to care for me any longer, and I had scant resources to care for myself. I tried my hand at a bunch of service industry jobs but I'm s**t with people, so I never got promoted and was badly underemployed and unable to make ends meet. I had no safety net, so I felt like I had to grow, to fight and to climb, just to get to a place I could relax. I knew there was one thing I was good at for sure, university/grad-level coursework, especially research. So I went for that and have had a lot better luck with decent pay as a scientist. It turns out that there is a LOT of stuff you have to do in academia before you get to a point where you can coast though. I think that's part of why it's common for people who go for this type of career to experience burnout, even if they are not autistic. I feel some burnout, I'm just not in a situation where stopping working is an option though. There's no one in my life who could take care of me if I fell to pieces, so I have to stick it out in survival mode and hope for the best. :lol:

firemonkey wrote:
Then there's masking. I'll start by admitting I have a far less than expert level of knowledge re what is 'masking'. My simple minded description of it would be 'behaving in a way that makes me seem less autistic'. For better or for worse WYSIWYG with me. I think the nearest I get to it bis 'I'd prefer x ,but accept y if it's more convenient/less hassle for the other person or persons.


I'm going to be honest, I get really confused by people on social media doing those "mask-on" "mask-off" videos. If I am masking, I've internalized it enough that I can't switch on and off at random. I know not to stim when people are looking because it bothers them. That's about it. for that exact reason though, I'd be so afraid of filming myself stimming and showing it to the world. I wouldn't want to face that judgement. I personally would feel too exposed.

In fact, to me, that's the thing I can't relate to among autistic people on social media (YouTube, twitter, TikTok, etc.). It's how directly and confidently they talk to the camera as they show off their autistic-ness. Growing up I was always trying to hide my sensory issues. I was always making up lies to hide my face blindness or my inability to give a care about gossip. I learned that this made me abnormal and people would tease me for it. I would just avoid situations that could get me into trouble, not dive into those situations head first and announce my differences. I would never have had the courage to ask others to change what they are doing to accomodate me. It seems the other way around for a lot of people on social media. Maybe their way is better though. Maybe I should be more confident. Maybe I have internalized ableism. Maybe I should self-advocate more.



firemonkey
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21 Oct 2022, 11:28 am

I was surprised to see that I have 320 followers on Twitter. They mainly consist of psychologists,psychiatrists,other mental health workers, labour party members, autistic people, trans and trans friendly people, people with SMI
On FB I have 245 'friends'. 85% of those coming from high IQ groups on FB.

I don't have the self confidence to be an internet personality, but have spent the last 24 years or so finding and passing on info via the RSS feeds I have. Mainly, but not exclusively, about mental illness/mental health. It doesn't get anything like the recognition that successful internet personalities get, but I firmly believe I'm doing as much in my low key way to help others.

Then there's the 'minimum effort and knowledge required to help scientists' World community grid. I've been doing that since 2005. They give you virtual badges to acknowledge the help you've given, which is nice. I currently have the following badges.

10 year badge for mapping cancer markers, 2 year badge for openpandemics-Covid 19,2 year badge for microbiome immunity project,5 year badge fightaids@home, 1 year badge fightaids@home-phase 2, 1 year badge outsmart ebola together, 1 year badge Go fight against malaria, 2 year badge Help cure Muscular Dystrophy - Phase 2, 1 year badge help fight childhood cancer,1 year badge help conquer cancer,2 year badge Human proteome folding - Phase 2,