selection effects on perceptions of autism

kellyclowers:

stimmyabby:

cptsdcarlosdevil:

autistech:

autistech:

i think the emphasis on social behaviors in autism is probably way overblown.

if you’re interacting with someone whose cognition and perceptions are unusual, you don’t have the opportunity to directly observe their cognition and perceptions. but you have lots of opportunity to directly observe their social behaviors. so if their cognition and perception have any sort of effect on their social behaviors, it’s going to look like whatever weird thing is going on with them is inherently social.

and that’s not the only bias we should expect if our model of autism derives primarily from the observations of clinicians.

imagine you’re a therapist of some kind, and an autistic person shows up in your office. what is there to notice about them?

there’s the way they greet you. they way they talk, their vocabulary and sentence structure. the awkward feeling when they respond in unexpected ways to your non-verbal social signals, or fail to take turns in conversation. the way they move, how they rock back and forth or flap their hands or make other repetitive movements. the way they tend to repeat everything you say. the way they keep talking about horticulture session after session despite your every attempt to change the topic. the way they cover their eyes and start yelling when you turn the lights on or forget to hide your yellow jacket, but don’t react at all to the sound of their mother calling their name from the doorway. the way they melt down when you ask to meet at a different time next week.

you see the same behavior patterns over and over in this certain group of clients. so autism appears to be a condition characterized by 1) social deficits in emotional reciprocity, nonverbal communication, and social participation in general; 2) repetitive movements and speech patterns, 3) unusual intense focus on highly restricted interests, 4) something really odd about how they react to sensory inputs from the environment, and 5) insistence on sameness or rigid adherence to ritualized behavior patterns.

i have blind-men-touching-an-elephant feels about this description of autism. or maybe even looking-for-your-keys-under-the-lamp-post,-even-though-that’s-not-where-you-dropped-them,-because-you-can-see-here,-and-over-where-you-dropped-them-it’s-all-dark feels.

…except like it’s not even an elephant but instead some kind of enormous dinosaur with parts that are way too high up to reach. if people try to figure out what it is by touching its feet, one person says “it’s a thing with claws”, and another person says “no, it’s a thing with feathers”, and a third person who’s very clever responds, “the underlying truth is that it’s a thing with both claws and feathers”. eventually everyone agrees that whatever the thing is, it has claws and/or feathers of various types and to varying degrees. (which just clears everything right up, yeah?)

when you can only touch its feet, there’s no way to draw a picture of anything like the real animal, because nearly all of it is out of reach. your drawing will be all feathers and claws, and no torso or tail or head or teeth. you’re not *wrong* that dinosaurs tend to have feathers and claws, but you’re missing the true shape of things anyway.

importantly, a dinosaur would have a hellofa time recognizing itself in your drawing. especially an unusually tall dinosaur, or a dinosaur with few feathers, or one who’s been filing their claws way down since age five.

autism is a cognitive/perceptual style that *impacts* socialization, movement, speech patterns, conversation topics, reactions to sensory inputs, and preferences about order and sameness. but *none* of those factors carves reality at its joints.

(you wanna know what i think autism *really* is now, right? well i’ll tell you this much: i don’t know. but i think i “weak central coherence” is a shockingly powerful working model for predicting my own experiences, even if i’m still confused.)

I agree with this post, which is why I am really sympathetic to Lynn Waterhouse’s theory that autism is actually many different underlying neurodivergences which happen to all look the same to therapists. (Analogy: fever. Fever is clearly a discrete thing, and many treatments help all kinds of fever, but sometimes you have a fever because you have a flu and sometimes you have a fever as a drug reaction and sometimes you have a fever because you have a tumor, and these are meaningfully and importantly different.)

Anyway, “weak central coherence” feels really inaccurate to describe my autism, but I resonate with Temple Grandin’s description of the verbal/logic autistic thinking style. 

if you’re interacting with someone whose cognition and perceptions are unusual, you don’t have the opportunity to directly observe their cognition and perceptions. but you have lots of opportunity to directly observe their social behaviors. so if their cognition and perception have any sort of effect on their social behaviors, it’s going to look like whatever weird thing is going on with them is inherently social.

I looked up
“weak central coherence”… doesn’t fit me at all. If anything I see the big picture more than the little details. I’m guessing it really is like
cptsdcarlosdevil said, an outward effect of multiple different underlying issues.

I finally went looking for something I remembered that’s very relevant: Don’t ever assume autism researchers know what they’re doing.

(Also, touching on some of the rest: What I just told someone who didn’t match current autism stereotypes, My sort of people, just as real as theirs.)

There does seem to be quite the variety of experiences getting pushed under one umbrella, based on some surface similarities as (often very oddly) described and interpreted from the outside. Important to keep in mind, and not assume that the map necessarily even has much to do with the territory.

selection effects on perceptions of autism

stimmyabby:

cptsdcarlosdevil:

autistech:

autistech:

i think the emphasis on social behaviors in autism is probably way overblown.

if you’re interacting with someone whose cognition and perceptions are unusual, you don’t have the opportunity to directly observe their cognition and perceptions. but you have lots of opportunity to directly observe their social behaviors. so if their cognition and perception have any sort of effect on their social behaviors, it’s going to look like whatever weird thing is going on with them is inherently social.

and that’s not the only bias we should expect if our model of autism derives primarily from the observations of clinicians.

imagine you’re a therapist of some kind, and an autistic person shows up in your office. what is there to notice about them?

there’s the way they greet you. they way they talk, their vocabulary and sentence structure. the awkward feeling when they respond in unexpected ways to your non-verbal social signals, or fail to take turns in conversation. the way they move, how they rock back and forth or flap their hands or make other repetitive movements. the way they tend to repeat everything you say. the way they keep talking about horticulture session after session despite your every attempt to change the topic. the way they cover their eyes and start yelling when you turn the lights on or forget to hide your yellow jacket, but don’t react at all to the sound of their mother calling their name from the doorway. the way they melt down when you ask to meet at a different time next week.

you see the same behavior patterns over and over in this certain group of clients. so autism appears to be a condition characterized by 1) social deficits in emotional reciprocity, nonverbal communication, and social participation in general; 2) repetitive movements and speech patterns, 3) unusual intense focus on highly restricted interests, 4) something really odd about how they react to sensory inputs from the environment, and 5) insistence on sameness or rigid adherence to ritualized behavior patterns.

i have blind-men-touching-an-elephant feels about this description of autism. or maybe even looking-for-your-keys-under-the-lamp-post,-even-though-that’s-not-where-you-dropped-them,-because-you-can-see-here,-and-over-where-you-dropped-them-it’s-all-dark feels.

…except like it’s not even an elephant but instead some kind of enormous dinosaur with parts that are way too high up to reach. if people try to figure out what it is by touching its feet, one person says “it’s a thing with claws”, and another person says “no, it’s a thing with feathers”, and a third person who’s very clever responds, “the underlying truth is that it’s a thing with both claws and feathers”. eventually everyone agrees that whatever the thing is, it has claws and/or feathers of various types and to varying degrees. (which just clears everything right up, yeah?)

when you can only touch its feet, there’s no way to draw a picture of anything like the real animal, because nearly all of it is out of reach. your drawing will be all feathers and claws, and no torso or tail or head or teeth. you’re not *wrong* that dinosaurs tend to have feathers and claws, but you’re missing the true shape of things anyway.

importantly, a dinosaur would have a hellofa time recognizing itself in your drawing. especially an unusually tall dinosaur, or a dinosaur with few feathers, or one who’s been filing their claws way down since age five.

autism is a cognitive/perceptual style that *impacts* socialization, movement, speech patterns, conversation topics, reactions to sensory inputs, and preferences about order and sameness. but *none* of those factors carves reality at its joints.

(you wanna know what i think autism *really* is now, right? well i’ll tell you this much: i don’t know. but i think i “weak central coherence” is a shockingly powerful working model for predicting my own experiences, even if i’m still confused.)

I agree with this post, which is why I am really sympathetic to Lynn Waterhouse’s theory that autism is actually many different underlying neurodivergences which happen to all look the same to therapists. (Analogy: fever. Fever is clearly a discrete thing, and many treatments help all kinds of fever, but sometimes you have a fever because you have a flu and sometimes you have a fever as a drug reaction and sometimes you have a fever because you have a tumor, and these are meaningfully and importantly different.)

Anyway, “weak central coherence” feels really inaccurate to describe my autism, but I resonate with Temple Grandin’s description of the verbal/logic autistic thinking style. 

if you’re interacting with someone whose cognition and perceptions are unusual, you don’t have the opportunity to directly observe their cognition and perceptions. but you have lots of opportunity to directly observe their social behaviors. so if their cognition and perception have any sort of effect on their social behaviors, it’s going to look like whatever weird thing is going on with them is inherently social.

in response to the ask about being a neat freak (/post/169904482919) – i’m the same! i have to wash the dishes as soon as i’m done cooking because washing one pan is less work than washing five if i let it pile up, i have to put everything back in its place or i’ll lose it, i have to write down my appointments so i remember to show up, i have to keep my living space tidy because i get very easily overwhelmed by visual/spatial clutter (i think it might be a sensory issue, i’m not sure?) [1/2]

actuallyadhd:

[2/2] until not that long ago i actually suspected i was autistic rather than having ADHD because the way i behave is often similar to having rigid routines and thinking patterns, but then i realised most of my ritual/‘neat-freak’ behaviours have a practical basis behind them – i think it’s mostly my way of managing executive dysfunction and a few other ADHD symptoms? 

(This post.)

I would add that it’s similar for a lot of autistic people: there are practical reasons for needing routines. Including working around lousy executive function. Seems like another one of those areas of overlap.

adhighdefinition:

jabberwockypie:

adhighdefinition:

“The name “Attention Deficit/Hyperactivity Disorder” misses one of the symptoms that is hardest to live with — emotional hypersensitivity.

When you think about ADHD hypersensitivity, you might think being sensitive to loud noises and scratchy labels in clothes. In many cases, the sensitivity also applies to our emotions. We cannot bear the pain of criticism; we are unable to brush off personal slights the way other people do.

So it’s not surprising that some adults with undiagnosed ADHD (like me) searching the Internet for answers about feeling emotionally overwhelmed think we have Borderline Personality Disorder (BPD).

The emotional symptoms of BPD are the cornerstone of the disorder. In fact, the new name for the condition is Emotionally Unstable Personality Disorder! So if you have undiagnosed ADHD and find that you suffer from persistent sadness, a mood disorder, and anxiety linked to your emotional hypersensitivity, a BPD diagnosis makes sense.

Instead of having these fluctuating feelings, when I’m emotionally overwhelmed, I withdraw into myself, the shutters come down. How could I have BPD and not display one of its key symptoms? I needed to ask an expert.

I saw a psychiatrist and he dismissed my self-diagnosis. Without the fluctuating emotions and the push/pull behavior, he confirmed that I didn’t have BPD. I wasn’t completely surprised, but I also felt that a diagnosis of mood disorders and anxiety that the psychiatrist handed out wasn’t correct.

I struggled on, trying to cope and taking SSRI medications until I had a breakdown and ended up in a hospital. Another psychiatrist I saw suggested that I might have ADHD. I thought she was mad. I had suicidal thoughts and had suffered an emotional collapse, so who cared if I found it difficult to sit still or concentrate? But then she explained how emotional hypersensitivity manifests itself in female adult sufferers of ADHD, and everything fell into place.”

(full article)

I’m curious as to how this relates to Rejection Sensitive Dysphoria, since she doesn’t use the term in the article, but it sounds related.

you’re right, it’s basically the same… RSD is just the fairly new term (in the world of ADHD) that is being used to describe how intense people with ADHD can experience emotions. it’s been around for a couple years now but not everyone has heard of it yet and more research needs to be done to validate its use. but as people get more educated, the term is used on an increasing level which is good!

I believe that most people with ADHD, myself included, can attest to the fact that it can have a big impact on one’s life (and sometimes even to the point of misdiagnosis or comorbidity, most commonly BPD or BD). the emotional component has always been part of the disorder but it has yet to make its way back into the DSM, sadly

autismserenity:

palpablenotion:

chitarra10:

So this was on the local news tonight.  A mother in a city about 20 minutes south of me has a 10y/o autistic son, and she said that because he’s autistic, she’s afraid he’s going to get hit by a car on the street because he “can’t think” and might just run out into the street without looking.  So she called some city officials and requested that they put up this sign in front of her home to warn drivers that there’s an autistic child in the area.  Within 3 days, they put this sign up just for her.

As an autistic person myself, this is just rubbing me an enormously wrong way.  I don’t like this.  At all.  In fact, I kinda hate it.  It just strikes me as one of those sympathy-addicted Autism Mom™ things that doesn’t take into account the humanity of their autistic kid.  Like she needs to announce to the world that she has no idea how to communicate with her own child, and rather than learning what kind of communication methods he needs as an autistic person, she just assumes that he’s just this unreachable burden she’s forced to bear, and is calling on the community to “help” her deal with this creature she can’t “control.”  And that lowers this poor boy to sub-human status.  Like she thinks they need their own personal “Deer Crossing” sign, but in her cause “Autistic Crossing.”  It just strikes me as so wrong.

What do you think?

the problem here is that all children will at one time or another run out into the street and you can get a city to put a “children at play” sign up to warn for any children playing or petition for a speed bump to be put into the neighbor hood, there are ways to do this without stigmatizing the “special needs” child (i, as an autistic child, did once run into the road in front of a car, and then i didn’t do it again because first, it scared me, second, it scared my parents, and third, i was punished for it, autistic children? are children, we all made mistakes and we do thoughtless things, like all children do)

also, if you’re so worried about your child and traffic and don’t care about what your yard and neighborhood looks like because that sign is a huge eye sore regardless, just put up a fence

The ableist idea that autistic people “can’t think” is so utterly horrifying, too.

Autism Parents™ are especially awful because they spend a lot of time promoting these ideas to one another.

One of the biggest concerns they push on each other is that their kids might just up and run into the street. There is an entire industry of kid leashes, trackers, etc. around it.

My first kid was autistic. In Autism Parent™ terms, we “had a runner.” Bc she started taking off from preschool and getting out the gates and down the stairs toward the street before anybody could notice/catch her.

Fortunately, none of us knew anything about autism at the time, and she wasn’t diagnosed, so the preschool just sat us down and said, “listen, we love your kid, you know that, she’s fantastic, we don’t have the resources she needs, but we would love to give you a referral to a great therapeutic preschool that would really be able to support her.” (Which she did go to, and freaking loved, fortunately.)

And like: in part BECAUSE I didn’t know anything about autism, (and in part because i get that kids are actually human beings, which should be a much more common concept), it was very fucking clear why she was “running.”

Her birth family was super dysfunctional; it wasn’t safe for her to acknowledge that at age three or four, while still living part time with her birth mom; and that created a lot of social anxiety and fear and stress and big feelings. And I’m sure there was all kinds of sensory shit going on that I didn’t know about. And that adds up to the seemingly-random need to flee.

And I think the same thing applies for any autistic kid, or adult, who has that urge to just take off. I definitely have that when I’m too triggered, ffs.

I don’t have it with sensory stuff, but only because I’m a fucking adult so I have the freedom to control a lot of my environment, and the knowledge of what helps, and safe quiet places to calmly go to when I need them.

I wish there were a program for Autism Parents™ that would teach THEM “social skills” like imagining that their kids are conscious human beings, and imagining how they themselves would feel in the kid’s situation. And like assuming that whatever their kid does or says might be reasonable and understandable, and trying to think of what that would mean.

Instead of the other way around – assuming that their kids are irrational-to-unthinking, and that there’s no meaning or value in what they say and do.

violent-darts:

myautisticjournal:

dangerously-human:

I think one of the things people don’t get about autism (or, probably, disability in general) is that it’s highly contextual. I can handle certain clothes in the right environment, at the right time of the month, and with enough sleep. I can talk to unfamiliar people when I’m around someone whose social energy I can sort of feed off of. I can break routine or ask for help if I’m taking care of someone else. But all of these things have a cost, you know? So if the surrounding elements aren’t exactly what I need, my ability to do the thing (and appear neurotypical doing it) is reduced or eliminated.

yES THIS IS IT.

On the day I got rid of my last wool sweater I was having such a bad day. I was so angry and cranky and short and unreasonable and impatient and then I finally noticed somehow that my arm itched and I took off the sweater. 

It is important to note that this sweater LOOKED fantastic. And I didn’t even parse it, consciously, as “scratchy”. I was not consciously aware that it had been bothering me. I actually loved this sweater. 

But I took it off and suddenly I was at least 50% calmer. I had 50% more patience, I hated people 50% less, I could think better. 

I have spent the last, like, six years learning to NOTICE when sensory processing hell is Fucking Me Over, so I can do something about it, instead of just … suffering all the consequences and not knowing why. 

This is also the story of why I do not wear socks, or shoes that cover my instep and my toes at the same time, if it is humanly possible to avoid it, and would actually rather up to a point have cold/wet/sore feet. 

I recently found out that I was diagnosed with Severe ADHD when I was only 18 months old. And I learned that the youngest age (on average ) is five years old.. (I’m doing a project in adhd and autism and stimming ) I dunno… I just think that’s pretty f***ing crazy

actuallyadhd:

From December 22 2017

Yeah, that’s really weird. Most of the things that are affected by ADHD aren’t even things typical children can do until they’re at least seven years old anyhow. Autism, on the other hand, can definitely be apparent from birth in some cases and by 18 months for sure.

If you can get more details about it, that would probably be really enlightening.

-J

No idea when that was, but there was maybe even more diagnostic overlap and confusion before professional views of autism expanded up into the ‘90s. Because ADHD was more on the radar as a possibility. (Some earlier discussion, at the end.)

I got dx’ed with the precursor to ADHD when I was maybe 3, based on things that would make people think autism now, with more labels added on later to cover what didn’t fit as ideas of ADHD changed. That didn’t used to be an uncommon thing, from talking to other people.

Mostly chiming in because that does sound awfully early for an ADHD dx.