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in reply to Matthew | The Autistic Coach

The myth that autistic people have no empathy and are emotionally cold.

This is one of the biggest reasons autistic people don't realise they're autistic, because we know that many of us can be hyper empathetic, and have big emotions.

Some autistic people do struggle to understand why other people feel the way they do, and some of us can seem unaffected or unfeeling, but often that's because allistic people misinterpret our body language, facial expression and tone of voice.

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in reply to Zumbador

I experience this most often and furiously when NTs expect some kind of social behaviour, rituals, beeing proactive about potential needs, that gives them the gut feeling that we "care" for them

As we dont recognice this, they get the feeling we dont care for them

Its for example when we are expected to proactively bring a bottle of water to someone to show our care, when they talk about hot weather

@theautisticcoach @actuallyautistic

in reply to Laberpferd

Another one is accepting a statement at face value.

Someone falls, you ask them if they're OK, they say they are, and you believe them and don't understand that you're supposed to understand they're not telling the truth.

One that I'm always bumping into is not realising that someone finds a certain topic of conversation upsetting. If it's pointed out to me, I totally understand why, but I often miss the context clues.

in reply to Zumbador

@Zumbador ...and here we have reason number 651 that I think I might be on the spectrum. I understand exactly what you're talking about here, and it's a source of great frustration for me.

ActuallyAutistic group reshared this.

in reply to Zumbador

@Zumbador

And the fact that some of us are so overwhelmed in the face of someone’s pain that we shut down, appearing unfeeling & cold.

in reply to Verđandi K. Soldusty

@Soldusty @Zumbador

I remember bumping into a woman in the supermarket years ago when I was visibly pregnant with my second child. Not a friend, but an acquaintance, a nice woman. She had 2 kids and had been pregnant with her third, due a similar time to me, but had just lost the pregnancy. I said hello and kept walking. I didn’t follow up with a phone call, visit or card. I felt crippled. And the fact that I still, not beat myself up, but feel bad & sad about it, says something.

in reply to Looking for explanations…

@Susan60 @Zumbador
I've not had to deal with something like that but if people have a serious long term or terminal illness or disease & load me up with the facts I'm just numb & can find zero words or anything.
I ended up ghosting someone years ago when they offered to have me come visit so I could just enjoy some company a nice cup of tea & the distraction of her gorgeous dog as I was dealing with my mum's death. It didn't help that we didn't seem to have much in common & after a couple of visits talk was about her & coping with her condition so I clammed up. To make it more awkward I was also painfully aware that all or a vast amount of my attention was on & for the dog.
I just couldn't go back after that. Me doing that & ghosting them will always haunt me.
in reply to Verđandi K. Soldusty

@Soldusty @Zumbador

I’ve done that type of thing. For me it’s been people whom I’ve know in one job, not had much in common with, & ghosted once I’ve moved to another job. Feel awkward if not really bad about it.

Much sadder was a friend whom I really liked & valued, but neither I nor my partner took to her then new partner. I let that friendship lapse, and still miss her.

in reply to Looking for explanations…

@Susan60 @Soldusty

It's twice happened to me that a friend needed me to say something to help them be able to tell me that they were having relationship problems. And I fumbled it both times and didn't know how to help them.

Both times I could tell they wanted to find a way to tell me they weren't fine. They asked me a question that seemed benign, but was really an opening to ask them "actually, you're not really OK, I can tell".

But I didn't know how to do that and just froze, and then the moment passed. Both times they drifted away from me and the friendship fizzled and I can understand why.

I understood how they felt, but I couldn't get myself to say what they needed to hear.
I'm not sure why.

in reply to Zumbador

@Zumbador @Soldusty

I think these are occasions where we need to say, “I don’t know what to say” or “I want to offer comfort/support, but I don’t know how.” Easy to say in hindsight with an old head on my shoulders! But I think that for us, rehearsing that answer is useful.

in reply to Looking for explanations…

@Susan60 @Zumbador
I think that's very true. I just hope that I am able to try & get those or similar words out as I'm not sure I could. I'm sure that a lot of us struggle with it & all we can do is try & hopefully not beat ourselves up too much if we fail.
in reply to Matthew | The Autistic Coach

That the prototypical or "average" person with autism is like the guy on TBBT. The majority of people with ASD are nonverbal (without years of intervention), and require a huge amount of care (again, many can become independent with significant intervention, but many probably cannot).
in reply to Different Than

@guyjantic While I agree with the assessment that Sheldon's a bad stereotype, I'd like to know your source on that most of us autistic folk are non-verbal without severe interventions, and incapable of being independent?

While I need support (mainly monetary since I can't work at all), it's not to the level of needing 24/7 care in a home, and I'm not fully sure I am an outlier there.

in reply to Antonius Marie ⚧

@melindrea It's from when I was fresh out of grad school and had been studying (not my main thing) autism etc. as part of a clinical rotation I was doing. I did another deep dive or two around... IDK, 2010? Something like that.

I'd need to get back into the literature to find the rates of these things again, at this point.

in reply to Different Than

@guyjantic @melindrea
The problem with all these rates and percentages, is that they are based on known autistics. In other words, those who have been diagnosed and also, in the worst case scenarios, often on those who are institutionalised. Given that it is highly possible that the majority of autistics are undiagnosed, often very adept at masking and even probably unaware that they are autistic, then such statistics are hardly reliable, or indicative of the population.
in reply to Kevin Davy

@pathfinder @melindrea We can only know what we can know. If nobody knows what's going on, then nobody knows what's going on (including you and everyone else). The reason the stats exist is because some people (many of them also autistic, I've learned) make it their life's work to try to understand these things.

Not knowing everything doesn't mean we know nothing, and we never know everything. It certainly seems, from recent journalism, anyway, that autism might have been underdiagnosed for decades, which isn't surprising at all. If that changes the proportions we estimate of autistic people who are verbal vs. not, then it changes.

in reply to Different Than

@guyjantic @melindrea
Stats like this are at best an indicator of what could be the shape of things. My pet hate is people assuming that they are the shape of things. As always, accuracy requires representative sample and population modelling. Given that not only has autism always been vastly undiagnosed and that even today it still is, the modelling that takes place is always going to be highly questionable.
in reply to Kevin Davy

@pathfinder @guyjantic @melindrea
.
I just realized something, that if the proportion of Autistics to Allistics never changed at all in reality, diagnoses would rise as Allistics evolve and get more Allistic (like what people call the Overton Window, the enshittification).
😳😀😇
in reply to Kevin Davy

@pathfinder @melindrea You've touched on something I think a lot of scientists (and I think maybe especially social scientists) think we understand: we will never truly know anything. That doesn't mean we know nothing, because there is higher and lower confidence in what we (think we?) know, but certainty just isn't on the table at all, and it never will be. So when a scientist of any kind says they know X or Y, they are almost certainly, in their head, aware that that knowledge will change at some point as new information is gleaned.

I actually get a little annoyed at conferences, sometimes, when I hear the rare presenter give a talk seeming like they are actually truly certain about what their data means. I don't think we can ever be certain. However, we have to live and make decisions, so we proceed as if our understanding of the current scientific state of a certain field were certainty, and we try to be ready to pivot when the evidence demands it, because what else can we do?

in reply to Different Than

@guyjantic @melindrea
Very true. Proper scientific understanding of truth, is that it's simply the best explanation to date. As opposed to, carved in stone, as many in the general population often think. My point is that given the limited and probably unrepresentative sampling, more care should be taken with any of the results.
in reply to Kevin Davy

@pathfinder @guyjantic @melindrea I'm in my 60s, had a successful career, although significant (to me) difficulties in certain ways all my life that I was able to mask very well. I realized a year or two ago that I might be autistic, after I learned something about it. I was just diagnosed as autistic this year. It's a whole spectrum.
in reply to Kevin Davy

@pathfinder @guyjantic @melindrea
Yes! I'm a software developer, working with software developers, and — although I'm not not qualified to splash diagnoses around — my A-dar pings itself to death every time I go into the office.
in reply to Kevin Davy

@pathfinder @nddev @melindrea I knew a mathematician in grad school. He knew I was studying clinical psych. We talked once and he said, "I just came from the annual Math Department holiday party... what is it in psychology when two or three people come to a party, stand in a corner for two or three hours, don't make eye contact with anyone, then leave?"

I think I took a long time to answer.

in reply to Kevin Davy

@pathfinder @nddev @melindrea That's what I thought, too. His description made these colleagues sound quite miserable, though of course from a thirdhand account I have no idea what their experience really was.
in reply to Different Than

@guyjantic @nddev @melindrea
That's because they probably were miserable. Office small talk, office politics, loud, forced and about as spontaneous as a military band, does anyone really enjoy them?
in reply to Kevin Davy

@pathfinder @guyjantic @nddev @melindrea
Or were they kindred spirits who found each other, Enjoyed a conversation together with no eye contact & went home having had a thoroughly good time, even if it didn’t appear that way to anyone else?
in reply to Kevin Davy

@pathfinder @guyjantic @nddev @melindrea I learned the other day apparently we’re only supposed to do eye contact for about 2-3 seconds every so many minutes 😆
in reply to Different Than

@guyjantic @melindrea yeah, there has been lots of progress on the diagnostic criteria (and understanding etc) for autism, esp. compared to pre-DSM-5.
When I was born the recommended course was internment. For my early teens it had become "trade school." By the time I completed graduate studies my special interest was a highly-prized skill, and now the profession is revisiting diagnostics emitted for the past 70 years against new criteria.
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This entry was edited (7 months ago)
in reply to Different Than

@guyjantic
Average?

I think you underestimate howany people are autistic and verbal.

Women are getting diagnosed in their thirties now, and men are afraid to get diagnosed.

@theautisticcoach @actuallyautistic

in reply to Jon Quass

@jonquass It's possible the estimates have changed. My information is research-based and at this point at least 15 years old (maybe more like 20).
in reply to Different Than

@guyjantic @jonquass Yeah, that's way too old for autism research. They were saying a ton of stuff that wasn't even close to true back then.
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Kevin Davy
@melindrea @guyjantic
Or even, if like me, you did have a speech delay, but otherwise didn't fit into the criteria of the day, or the stereotypes of who could be autistic, you wouldn't have been found out either.
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Kevin Davy
@Tooden @melindrea
Indeed. When I first went to school, I was probably more classically autistic. Speech delay, no eye contact, poor, to non-existent, social skills. And yet, it being the 60's and because I was clearly intelligent, autism wasn't even looked into. The model for what autism is, even though vastly better now, has never been fit for purpose and won't be until we are the ones who determine it.
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Kevin Davy
@guyjantic @matthewtoad43 @punishmenthurts @melindrea
As someone who likes to describe himself as a minimal speaker, not because I can't speak, but because I rarely see the need. I like to point out, that I'm always speaking, you just have to learn to listen.
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Different Than
@matthewtoad43 @punishmenthurts @pathfinder @melindrea Some friends in grad school who worked almost exclusively with autistic kids reminded me more than once that nonverbal doesn't mean "non-communicating," and even people who don't always speak are almost always communicating. Lessons I try to remember.
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Kevin Davy
@syllusg @Tooden @melindrea
Although, given how committed so-called experts are to their views, hardly surprising. I think it's only slow awareness by those willing to look beyond those views and pressure from the autistic community that have ever changed and are changing them now.
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Looking for explanations…

@guyjantic @melindrea @ideogram
It’s up to you, but most autistic people don’t use the person first, “I have autism” approach. From what I’ve read, most of us feel that autism is too significant to be an add-on. Our different neurology & perspectives influences everything we do, say, feel, witness etc. Plus the “have/has autism” feels like an excuse and sounds like an illness that might vary in severity and can be recovered from. I am autistic, and always will be, whether or not I appear so to others.

OTOH, that’s not always apparent in people who are high masking &/or people who are AuADHD. I feel that my autistic traits are sometimes moderated by my ADHD traits & vice versa, but while that might make me appear more “normal”, it can be quite confusing on the inside!

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Different Than
@melindrea @ideogram Thanks for this description. It was fascinating. And I still never know whether to use "has autism" or "is autistic."
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Antonius Marie ⚧

@ideogram
During my evaluation (which was done with very good people, so I have absolutely no complaints there), the psychologist doing my tests was expecting to find autism, but it was also his job to make sure he had paperwork to back it up. Anyways, he told me that there were two specific instances during it where he went from "I trust that the patient is autistic, but I have nothing apart from gut instinct to pin it on" to "yep, patient is autistic".

First: There was some kind of figure with lots of lines/figures/whatnot that I was supposed to remember and draw from memory. I drew it in the only way that made sense to me: bit by bit, start from one side and moving to the other. ... apparently most allistic people start by making the *largest* shape and then build out from there.

Second: Definition of words. We had a bunch of rather complicated words ("what does 'palliative' mean?", though of course in Swedish). And I knew most of them which in itself isn't a sign of anything more than being very well-read. But I defined them in a precise, dictionary-like, *formal* way. Which he said he'd seen a lot in autistic people.

(we also had the autistic vs "have autism" convo, because of course he used the "have autism" due to the perspective he's at, and I explained why I prefer and use "I'm autistic" over "I have autism" unless I need to explicitly talk about the diagnosis)

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ideogram
@melindrea
I recognise what you say about the way of speaking in a semi formal manner. I'm always amazed that allistic people always speak in the same way, in the same accent. I am often quite formal but also do different versions of myself or emphasizing different accents I have.
@guyjantic @pa @theautisticcoach @actuallyautistic
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Antonius Marie ⚧

@guyjantic @pa
Yes. While this is not true for every evaluator/etc ... For instance the cousin of my nieces--she's gotten some diagnosis (exact ones irrelevant), her younger sister is autistic (including some serious developmental issues), but she realised at some point that she's pretty sure she's autistic.

She, in her late teens, got an evaluator who gave her some toys "so you're not bored", and in the end denied the diagnosis because she (again, in her late teens, near adult) didn't behave like a five year old boy.

Not all people working with autism still hold that thought ... but enough of them that it's sometimes a lottery on whether you'll get help or someone that projects all of their bias on you.

You can't be autistic because ...
- you can keen eye contact (Yeah, but I generally don't, I'm just really good at faking it)
- You have a spouse (yep, and me and him spend a lot of time just existing in each other's company--he's not non-speaking ... but he doesn't speak much unless there's some specific topics)
- You can and do talk (yep ... but want to hear something fun? The way I talk is fairly common among autistic folks: I am precise, semi-formal, trying to ensure maximum correctness)
- You have empathy (a lot of us do, even the ones claimed to not have ... it's just that *our* way of communicating doesn't always mesh with allistic people--we don't make the right faces, or the right mouth noises, for allistic people to recognise it as what they call empathy)

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Different Than
@pa @melindrea This seems entirely reasonable to me. In the last 20-30 years we've learned that lots of populations we thought we understood were much larger because of things like this. I think one issue might be that autism is generally (still) studied as a childhood disorder. Nobody thinks it just goes away, but the DSM classifying it in Disorders of Childhood reflected psychiatric thinking for decades, and I suspect it biased people toward ignoring it in adults, so maybe kids who "passed" for a while then just got forgotten; they missed the window of opportunity where someone might have noticed and diagnosed them. Now I suppose there are at least some people casting a wider net and seeing the larger numbers.
in reply to Matthew | The Autistic Coach

that communication failures with neurotypicals aren’t our fault because we are a minority. Communication failures involve two people.
in reply to cybervegan

@cybervegan It's a pat response that seems technically true but is actually not. Autism, like any other unique human flavor, is made by tweaking some of the dials on characteristics all humans have. Yes, we all have the dials. no, they aren't all tweaked to "autism."
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Different Than
re: CW sexual assault reference

Sensitive content

in reply to Different Than

@pa @melindrea I study sexual assault/aggression. FWIW in my field this has happened repeatedly (note: I am not making any connection here except in the way prevalence/incidence estimates evolve over time). Until the 1970s or 80s the idea of juvenile sex offenders was treated as basically ludicrous, which led to decades (centuries? millennia?) of children being hurt because nobody could seem to fathom the concept. As soon as anyone started asking the right questions we discovered way more sex offenders than we knew about previously.

The same dynamic happened with female sex offenders, male victims, female juvenile sex offenders, developmentally disabled sex offenders, gay/lesbian sex offenders...

I keep thinking at some point people in all fields will suddenly realize that humans gonna hume, but it seems to be a slow process.

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