Autism is a Spectrum
September 17, 2022 10:49 AM Subscribe
Love this. I also like the visual of a color wheel. Another term you'll hear is "spiky profile," because strengths and weaknesses often have much wider gaps than in the neurotypical population.
I'm in the 3rd percentile for some skills and 99th for others. I like to ask people, what functioning level is an autistic who has screaming meltdowns, isn't allowed to use the stove for safety reasons, and who can't complete basic hygiene tasks on their own? What functioning level is an autistic who has a thriving friend group, is getting their PhD, and has won awards for their writing? Because I'm both.*
*In the interest of transparency, I don't have screaming meltdowns anymore, but only because I have a partner who can instantly recognize the signs and immediately help me escape whatever situation is causing the meltdown. A whole lot of "functioning" is very environmental. In academic settings I'm considered extremely intelligent. When ordering food for takeout my developmental disability is so obvious that people talk to me like they're worried about me being outside of the house alone.
posted by brook horse at 11:17 AM on September 17, 2022 [101 favorites]
I'm in the 3rd percentile for some skills and 99th for others. I like to ask people, what functioning level is an autistic who has screaming meltdowns, isn't allowed to use the stove for safety reasons, and who can't complete basic hygiene tasks on their own? What functioning level is an autistic who has a thriving friend group, is getting their PhD, and has won awards for their writing? Because I'm both.*
*In the interest of transparency, I don't have screaming meltdowns anymore, but only because I have a partner who can instantly recognize the signs and immediately help me escape whatever situation is causing the meltdown. A whole lot of "functioning" is very environmental. In academic settings I'm considered extremely intelligent. When ordering food for takeout my developmental disability is so obvious that people talk to me like they're worried about me being outside of the house alone.
posted by brook horse at 11:17 AM on September 17, 2022 [101 favorites]
Thanks very much for this. I had net seen it before and it completely re-wrote my thinking. She was 100% right I was thinking gradient even though I know better.
posted by Uncle at 11:23 AM on September 17, 2022 [7 favorites]
posted by Uncle at 11:23 AM on September 17, 2022 [7 favorites]
I've been using a couple of metaphors for describing aspects of autism to others, both also going into the idea of "the spectrum" and the potential inherent in that framing.
One of them uses spectrometry and spectroscopy, like how we can figure out what elements and chemicals are in a star, or a planet's atmosphere. This is useful I think for talking about "is someone autistic if they do X." It's not that one particular trait, like eye contact avoidance (using a stellar example, say, a hydrogen response) suggests you probably have an autistic brain, or stimming (carbon-something), or whatever, it's that you've got responses in all of these things, and clustered in such-and-such a way. And then you take a leap and say, okay, the responses we're seeing in this spectrum does not mean that you fit some narrow profile of the one kind of autistic planet, but that you might fit into the category of autistic planet, of which there are many kinds. I think it's mostly a good internal tool for someone starting to explore if they are autistic.
The one I'm really excited about, and have been working on for awhile trying to understand more of the math so I can make it a little crunchier, is something to do with signal frequencies and Fourier transformations. I think there's a lot of easy potential there to help describe masking as like.. literal-metaphorical signal masking. It helps talk about "but you don't LOOK autistic". Like.. no, I don't, because I'm putting a tremendous amount of energy into increasing neurotypical signals that flatten out the peaks and bring up the troughs so that I "sound" like what you're expecting to "hear". And the times when you, oh, woah, you're quite a lot right now, those are the times I either can't quite smooth out the signal enough, or I've just completely tapped out and you're getting the raw output.
I think there are still some problems with these, because it's difficult to make sure you're not looking for clues, or trying to hard to make a pattern fit. But they've been useful for me as I work to figure out what all of this means for me and my brain.
posted by curious nu at 12:25 PM on September 17, 2022 [17 favorites]
One of them uses spectrometry and spectroscopy, like how we can figure out what elements and chemicals are in a star, or a planet's atmosphere. This is useful I think for talking about "is someone autistic if they do X." It's not that one particular trait, like eye contact avoidance (using a stellar example, say, a hydrogen response) suggests you probably have an autistic brain, or stimming (carbon-something), or whatever, it's that you've got responses in all of these things, and clustered in such-and-such a way. And then you take a leap and say, okay, the responses we're seeing in this spectrum does not mean that you fit some narrow profile of the one kind of autistic planet, but that you might fit into the category of autistic planet, of which there are many kinds. I think it's mostly a good internal tool for someone starting to explore if they are autistic.
The one I'm really excited about, and have been working on for awhile trying to understand more of the math so I can make it a little crunchier, is something to do with signal frequencies and Fourier transformations. I think there's a lot of easy potential there to help describe masking as like.. literal-metaphorical signal masking. It helps talk about "but you don't LOOK autistic". Like.. no, I don't, because I'm putting a tremendous amount of energy into increasing neurotypical signals that flatten out the peaks and bring up the troughs so that I "sound" like what you're expecting to "hear". And the times when you, oh, woah, you're quite a lot right now, those are the times I either can't quite smooth out the signal enough, or I've just completely tapped out and you're getting the raw output.
I think there are still some problems with these, because it's difficult to make sure you're not looking for clues, or trying to hard to make a pattern fit. But they've been useful for me as I work to figure out what all of this means for me and my brain.
posted by curious nu at 12:25 PM on September 17, 2022 [17 favorites]
I do.... Just a million times better with a partner. The routine and stability. The dedication to, maybe not mask exactly but to care more about doing the dishes, laundry, the cleaning. Plus getting out of the house and socializing. It's a huge difference, to the point where all my previous girlfriends wonder how I survived on my own, lol. I wonder what my life would have been like if I had.. a robot chef and keeper, or a personal assistant. It's hard to do it alone.
posted by Jacen at 12:44 PM on September 17, 2022 [12 favorites]
posted by Jacen at 12:44 PM on September 17, 2022 [12 favorites]
@brook horse THANK YOU for this turn of phrase "A whole lot of "functioning" is very environmental."
Beautifully crystallizes a lot of what has been frustrating me for years when talking about what we're now calling "neurodivergent."
"You don't look autistic*" I know, because I'm putting a lot of resources into masking
OR (better): I know, because I'm getting the supports I need to compensate for things that are exhausting and challenging otherwise.
*Or neurodivergent, which I'm using as a broader term.
posted by SaharaRose at 12:52 PM on September 17, 2022 [14 favorites]
Beautifully crystallizes a lot of what has been frustrating me for years when talking about what we're now calling "neurodivergent."
"You don't look autistic*" I know, because I'm putting a lot of resources into masking
OR (better): I know, because I'm getting the supports I need to compensate for things that are exhausting and challenging otherwise.
*Or neurodivergent, which I'm using as a broader term.
posted by SaharaRose at 12:52 PM on September 17, 2022 [14 favorites]
One of them uses spectrometry and spectroscopy
Yes, this is what I was thinking about: a spectrogram of sorts.
posted by Halloween Jack at 1:02 PM on September 17, 2022
Yes, this is what I was thinking about: a spectrogram of sorts.
posted by Halloween Jack at 1:02 PM on September 17, 2022
And here's the classic counterpoint discussing the sadly prevalent and highly under diagnosed Allistic Spectrum Disorder
posted by Jacen at 1:09 PM on September 17, 2022 [14 favorites]
posted by Jacen at 1:09 PM on September 17, 2022 [14 favorites]
That spectroscopy metaphor is inspired, curious nu.
You might be able to achieve some of the goals you’re reaching for with Fourier analysis with spectroscopy by talking in terms of emission lines and absorption lines, because stars will have very bright lines in their spectra when some of their elements get really hot, the emission lines, and very dark lines as well, the absorption lines, because their light has to pass through gas in cooler outer parts and surrounding and intervening gas before we can observe it, which kind of captures some of the amazing brilliancies and confounding blanknesses of individual autistic people
posted by jamjam at 1:11 PM on September 17, 2022
You might be able to achieve some of the goals you’re reaching for with Fourier analysis with spectroscopy by talking in terms of emission lines and absorption lines, because stars will have very bright lines in their spectra when some of their elements get really hot, the emission lines, and very dark lines as well, the absorption lines, because their light has to pass through gas in cooler outer parts and surrounding and intervening gas before we can observe it, which kind of captures some of the amazing brilliancies and confounding blanknesses of individual autistic people
posted by jamjam at 1:11 PM on September 17, 2022
A whole lot of "functioning" is very environmental.
Yes. Yes it is.
To pick just one example: I'm the same person I was 25 years ago; but 25 years ago I worked in a quiet office with large desks and a culture of quiet, and HVAC systems were not that common, and nobody had the wherewithal to watch videos on public transport (with or without earphones)... and I had *no idea* how badly noise affected me.
posted by ManyLeggedCreature at 2:00 PM on September 17, 2022 [31 favorites]
Yes. Yes it is.
To pick just one example: I'm the same person I was 25 years ago; but 25 years ago I worked in a quiet office with large desks and a culture of quiet, and HVAC systems were not that common, and nobody had the wherewithal to watch videos on public transport (with or without earphones)... and I had *no idea* how badly noise affected me.
posted by ManyLeggedCreature at 2:00 PM on September 17, 2022 [31 favorites]
i have come to suspect, very strongly, that i am neurodivergent. so much so, that i've sought out a psychologist for assessment. i've mentioned this to some friends, who have had very strong reactions - "YOU can't be autistic! you're too outgoing. my brother is autistic and you are nothing like him, he really struggles."
another said, "i work with the severely disabled, you aren't disabled at all, you have none of the difficulties they experience!"
it made me feel terrible. it was as though they were accusing me of trying to get away with something. even my therapist is hesitant about it. but the more i learn about it, the more it makes sense. it would just answer SO many questions. this article really sums it up, so clearly and succinctly.
another friend was a lot more open-minded - "oh yeah, you're definitely an aspie. like me. it isn't always obvious and nobody is the same. that's why they call it a spectrum!"
i agree. it's not a gradient, and we shouldn't think of it that way.
thank you for sharing this.
posted by lapolla at 3:52 PM on September 17, 2022 [14 favorites]
another said, "i work with the severely disabled, you aren't disabled at all, you have none of the difficulties they experience!"
it made me feel terrible. it was as though they were accusing me of trying to get away with something. even my therapist is hesitant about it. but the more i learn about it, the more it makes sense. it would just answer SO many questions. this article really sums it up, so clearly and succinctly.
another friend was a lot more open-minded - "oh yeah, you're definitely an aspie. like me. it isn't always obvious and nobody is the same. that's why they call it a spectrum!"
i agree. it's not a gradient, and we shouldn't think of it that way.
thank you for sharing this.
posted by lapolla at 3:52 PM on September 17, 2022 [14 favorites]
The one I'm really excited about, and have been working on for awhile trying to understand more of the math so I can make it a little crunchier, is something to do with signal frequencies and Fourier transformations. I think there's a lot of easy potential there to help describe masking as like.. literal-metaphorical signal masking. It helps talk about "but you don't LOOK autistic". Like.. no, I don't, because I'm putting a tremendous amount of energy into increasing neurotypical signals that flatten out the peaks and bring up the troughs so that I "sound" like what you're expecting to "hear". And the times when you, oh, woah, you're quite a lot right now, those are the times I either can't quite smooth out the signal enough, or I've just completely tapped out and you're getting the raw output.
Ah, now you got me thinking about masking in terms of altering signals to avoid consequences for being, mm, "overheard"--by predators, for example, or competitors. I'm very sleepy and minimally brain right this sec, but I did SO MUCH animal signaling theory during my diss. Animal signaling is not a perfect parallel obviously but... if you look at communication in terms of senders, signals, and receivers, you can assign individual costs to both controlling the signals you encode and send and also to decoding and interpreting signals you receive from other people. If you do that, the asymmetries in the cost of communication between both autistic and allistic people and also between individuals become pretty easy to explain. This is of course especially true because signals tend to decay across time and space, and the more degraded any signal is, the more energy it takes to decode them. So you can model, say, the auditory processing issues that are so common in neurodivergent people as a heightened inability to parse signals that are degraded even a little bit by, say, crosstalk ...
anyway I'm both capable of handling shit like that and also standing for forty minutes in my kitchen trying to figure out how to start doing the dishes. (real example! last night!) I also had sobbing public meltdowns well into adolescence and as an adult mostly only stopped having them by carefully limiting the situations I put myself in. Once in college I had a meltdown because I'd tried baklava in the car and there wasn't a place to wash my hands and I was sticky and everything was therefore extremely bad.
I can fix that one by caching hand sanitizer around my person. Becoming an adult who could control more of my world helped tremendously: I have always found that the more control I have over my environment, the more effectively I can inhabit my Competent Self. And I'm very lucky in that I can get away with a lot of control in my career and that my spouse and I (and often, housemate) can kludge together a more or less functional household between us. (I don't think I've lived with a neurotypical person since roughly 2011.) Because everyone in the house has different strengths and weaknesses, between us we can usually work out how to achieve goals one piece at a time.
posted by sciatrix at 4:19 PM on September 17, 2022 [18 favorites]
Ah, now you got me thinking about masking in terms of altering signals to avoid consequences for being, mm, "overheard"--by predators, for example, or competitors. I'm very sleepy and minimally brain right this sec, but I did SO MUCH animal signaling theory during my diss. Animal signaling is not a perfect parallel obviously but... if you look at communication in terms of senders, signals, and receivers, you can assign individual costs to both controlling the signals you encode and send and also to decoding and interpreting signals you receive from other people. If you do that, the asymmetries in the cost of communication between both autistic and allistic people and also between individuals become pretty easy to explain. This is of course especially true because signals tend to decay across time and space, and the more degraded any signal is, the more energy it takes to decode them. So you can model, say, the auditory processing issues that are so common in neurodivergent people as a heightened inability to parse signals that are degraded even a little bit by, say, crosstalk ...
anyway I'm both capable of handling shit like that and also standing for forty minutes in my kitchen trying to figure out how to start doing the dishes. (real example! last night!) I also had sobbing public meltdowns well into adolescence and as an adult mostly only stopped having them by carefully limiting the situations I put myself in. Once in college I had a meltdown because I'd tried baklava in the car and there wasn't a place to wash my hands and I was sticky and everything was therefore extremely bad.
I can fix that one by caching hand sanitizer around my person. Becoming an adult who could control more of my world helped tremendously: I have always found that the more control I have over my environment, the more effectively I can inhabit my Competent Self. And I'm very lucky in that I can get away with a lot of control in my career and that my spouse and I (and often, housemate) can kludge together a more or less functional household between us. (I don't think I've lived with a neurotypical person since roughly 2011.) Because everyone in the house has different strengths and weaknesses, between us we can usually work out how to achieve goals one piece at a time.
posted by sciatrix at 4:19 PM on September 17, 2022 [18 favorites]
Ahhh… as a person on the spectrum even I tend to think of it as a hokey Homeland Security-esque guide to conditions. Like “Today I’m Green—staying alert for aspie behaviors—but yesterday I was Yellow and bored a coworker to tears talking about the Max Headroom 80s TV show.”
posted by infinitewindow at 4:45 PM on September 17, 2022 [3 favorites]
posted by infinitewindow at 4:45 PM on September 17, 2022 [3 favorites]
If the author cited her sources, I’d be more impressed.
posted by Ideefixe at 4:54 PM on September 17, 2022 [1 favorite]
posted by Ideefixe at 4:54 PM on September 17, 2022 [1 favorite]
Why?
I mean that very sincerely: for the first thing, the peer reviewed literature on autism contains some absolutely incredible garbage, speaking as someone who has been moving into the neuroscience end of the field. It's a space that is incredibly unfriendly to anyone who conceptualizes themselves as autistic: the literature is usually pretty dehumanizing, the perspectives of autistic people are often ignored, and I have spoken to at least six other diagnosed autistics in academia who fled from working on autism because reading the literature was so dehumanizing.
Two: the argument in the linked article is, as much as anything else, an argument that incorporates the perspectives and described experiences of autistic activists of a variety of needs and abilities. The commentary from speakers who aren't the author are linked and cited in the text. From the perspective of describing the lived experience of many people in one's community, are academic citations really the relevant metric?
posted by sciatrix at 5:42 PM on September 17, 2022 [33 favorites]
I mean that very sincerely: for the first thing, the peer reviewed literature on autism contains some absolutely incredible garbage, speaking as someone who has been moving into the neuroscience end of the field. It's a space that is incredibly unfriendly to anyone who conceptualizes themselves as autistic: the literature is usually pretty dehumanizing, the perspectives of autistic people are often ignored, and I have spoken to at least six other diagnosed autistics in academia who fled from working on autism because reading the literature was so dehumanizing.
Two: the argument in the linked article is, as much as anything else, an argument that incorporates the perspectives and described experiences of autistic activists of a variety of needs and abilities. The commentary from speakers who aren't the author are linked and cited in the text. From the perspective of describing the lived experience of many people in one's community, are academic citations really the relevant metric?
posted by sciatrix at 5:42 PM on September 17, 2022 [33 favorites]
That was extremely enlightening. I've been struggling a long time to figure out if I am on the autism spectrum vs merely having a number of overlapping traits due to ADHD. The article was the clearest way I've heard differences in presentation explained.
Like, if I use her illustration of the boxes of traits and their corresponding colors:
I'm a medium amount of blue & teal
I'm a lot green & yellow
I'm extremely orange
I'm somewhat red
I'm a little reddish-black
So definitely a rainbow and not "blue" or "red".
posted by Serene Empress Dork at 6:34 PM on September 17, 2022 [3 favorites]
Like, if I use her illustration of the boxes of traits and their corresponding colors:
I'm a medium amount of blue & teal
I'm a lot green & yellow
I'm extremely orange
I'm somewhat red
I'm a little reddish-black
So definitely a rainbow and not "blue" or "red".
posted by Serene Empress Dork at 6:34 PM on September 17, 2022 [3 favorites]
Until the DSM-5 was published in 2013, they didn't think you could have both Autism and ADHD. Now they recognize that having one makes a comorbid diagnosis for the other more likely.
posted by Chrysopoeia at 7:27 PM on September 17, 2022 [14 favorites]
posted by Chrysopoeia at 7:27 PM on September 17, 2022 [14 favorites]
I thought this was going to be the colour wheel article, but although it's tackling a similar problem it has a different approach. It's really helpful for improving my understanding of the struggles autistic people in my life are dealing with, thank you.
The particularly useful part to me is backed up by what MeFites have said here too - that people judge the severity of a disability by how much it inconveniences them, not by how much it affects the person with the disability. Which is pretty fucked up now that I think about it. But still in line with what we know about hierarchical societies, I suppose.
posted by harriet vane at 7:35 PM on September 17, 2022 [16 favorites]
The particularly useful part to me is backed up by what MeFites have said here too - that people judge the severity of a disability by how much it inconveniences them, not by how much it affects the person with the disability. Which is pretty fucked up now that I think about it. But still in line with what we know about hierarchical societies, I suppose.
posted by harriet vane at 7:35 PM on September 17, 2022 [16 favorites]
I’m in the autism field despite the fact that doing so is rubbing salt into my trauma, and I can confirm this absolutely reflects the current literature. I’m busy doing research so I don’t have time to do a lit review, but search Google Scholar for autism spiky profile or autism heterogeneity and you’ll get loads of stuff.
Not that I think it’s necessary given the overwhelming amount of autistic adults describing their own experiences. But the literature very much supports this as well.
posted by brook horse at 8:40 PM on September 17, 2022 [13 favorites]
Not that I think it’s necessary given the overwhelming amount of autistic adults describing their own experiences. But the literature very much supports this as well.
posted by brook horse at 8:40 PM on September 17, 2022 [13 favorites]
Very cool. I hadn't read this article yet
I really need to crack into my copy of "We're not broken" by Eric Garcia.
posted by PistachioRoux at 10:21 PM on September 17, 2022
I really need to crack into my copy of "We're not broken" by Eric Garcia.
posted by PistachioRoux at 10:21 PM on September 17, 2022
Thanks for sharing this!
I also thought it would be the usual "linear vs colour wheel" argument but this makes so much more sense.
i have come to suspect, very strongly, that i am neurodivergent.
lapolla, I recently came to the realisation that I am autistic.
You might find this useful, Here is a resource document the university of Washington Autism Center put together to help you decide if you need to be formally diagnosed, and to learn more about autism.
posted by Zumbador at 11:35 PM on September 17, 2022 [5 favorites]
I also thought it would be the usual "linear vs colour wheel" argument but this makes so much more sense.
i have come to suspect, very strongly, that i am neurodivergent.
lapolla, I recently came to the realisation that I am autistic.
You might find this useful, Here is a resource document the university of Washington Autism Center put together to help you decide if you need to be formally diagnosed, and to learn more about autism.
posted by Zumbador at 11:35 PM on September 17, 2022 [5 favorites]
A whole lot of "functioning" is very environmental.
Context and history is always important.
posted by Pouteria at 11:58 PM on September 17, 2022 [4 favorites]
Context and history is always important.
posted by Pouteria at 11:58 PM on September 17, 2022 [4 favorites]
Like sands through the hourglass such are the days of our lives. Now sand falling through the hourglass tends to make a conical shape based on the angle of repose of the material. But the sand is not spherical or even cubical cow-like, more random crystals. Then there is environment and conscious will that can effect the shape of the pile. There are fractures where the base collapses, there are preferred directions of the falling distribution of the incoming tick-tocks of incremental change. The pile ends up looking more like a lone mountain with ridges and valleys. It's still a mountainous pile, but all jagged on the edges.
Flip that inside out so that the source of the pile is on the inside and the pile wraps around almost spherical, but not. It looks more like one of those spikey dog chew toys, or the rollers on that back-rub thingy, or a curled up hedgehog.
Now take that up another dimension or few and you get a classical hypersphere in a hyptercube where the freedom of movement inside is tiny yet the area is huge. A multi-dimensional spikey dog chew toy.
What people match on and communicate via is rotation of these individual hypersperes and a sort of least-squares-difference-match of alligning spikes. This difference is also congruent to Impedance Mismatch and Shared Experience (aka. Compression Dictionaries).
Ease of Allistic as it were is less spikey and more just spherical. All the other 'spectrums' or 'experience' or any other thing... those make the spikes.
Now it doesn't matter that much which dimensions align with which. Opposites can attract. It may be easier or harder to rotate this spikey hypersphere to match close enough. There may be one spike somewhere that through rotations minimizes the other non-matching spike differences. There may be different spikes in different places but more spikes of equal magnitude in other places, there may be cracks where something collapsed.
We're all in all along all spectrums and that range can be circled by means of e**(iπ) + 1= 0. It's all circular.
Now if you rotate and project back down... and look from the bottom of the hourglass... that projection...
Lipstick on butts. We're all unique snowflakes/assholes.
posted by zengargoyle at 7:24 AM on September 18, 2022 [2 favorites]
Flip that inside out so that the source of the pile is on the inside and the pile wraps around almost spherical, but not. It looks more like one of those spikey dog chew toys, or the rollers on that back-rub thingy, or a curled up hedgehog.
Now take that up another dimension or few and you get a classical hypersphere in a hyptercube where the freedom of movement inside is tiny yet the area is huge. A multi-dimensional spikey dog chew toy.
What people match on and communicate via is rotation of these individual hypersperes and a sort of least-squares-difference-match of alligning spikes. This difference is also congruent to Impedance Mismatch and Shared Experience (aka. Compression Dictionaries).
Ease of Allistic as it were is less spikey and more just spherical. All the other 'spectrums' or 'experience' or any other thing... those make the spikes.
Now it doesn't matter that much which dimensions align with which. Opposites can attract. It may be easier or harder to rotate this spikey hypersphere to match close enough. There may be one spike somewhere that through rotations minimizes the other non-matching spike differences. There may be different spikes in different places but more spikes of equal magnitude in other places, there may be cracks where something collapsed.
We're all in all along all spectrums and that range can be circled by means of e**(iπ) + 1= 0. It's all circular.
Now if you rotate and project back down... and look from the bottom of the hourglass... that projection...
Lipstick on butts. We're all unique snowflakes/assholes.
posted by zengargoyle at 7:24 AM on September 18, 2022 [2 favorites]
Thanks for sharing this. I've got a recently diagnosed kid and need to wrap my head around stuff.
posted by Harald74 at 8:14 AM on September 18, 2022 [1 favorite]
posted by Harald74 at 8:14 AM on September 18, 2022 [1 favorite]
This is such an insightful and helpful article. I was diagnosed with depression 10 years ago, and then with ADHD five years ago. Two of my kids are autistic. I’m now fairly certain that I am autistic as well and I’m waiting on an appointment to start the neuro-psych testing to confirm it. I might share this article with everyone I meet from now on.
posted by wabbittwax at 8:56 AM on September 18, 2022 [10 favorites]
posted by wabbittwax at 8:56 AM on September 18, 2022 [10 favorites]
zumbador thank you for that link. looks very helpful.
last night, i went down the rabbit hole of taking allllllllll the online tests i could find. wow.
NEURDIVERGENCE, FTW!
i have my first appointment for assessment on Tuesday. here's hoping that the doctor is good at what he does, and helps. i have been on a real journey of self-discovery over the past 2-1/2 years = diagnosed with social anxiety and panic disorder, and discovering via a DNA test that my dad was not my biological father. now, this. weeeeeeeeeeeeeeeeee!
ya know what? rather than this knowledge being traumatic, it has been really helpful. enlightening. like fitting the pieces of a puzzle together. that satisfying almost silent little click.
for those of you on your own journeys,good luck and i wish you the best ♥
posted by lapolla at 3:55 PM on September 18, 2022 [12 favorites]
last night, i went down the rabbit hole of taking allllllllll the online tests i could find. wow.
NEURDIVERGENCE, FTW!
i have my first appointment for assessment on Tuesday. here's hoping that the doctor is good at what he does, and helps. i have been on a real journey of self-discovery over the past 2-1/2 years = diagnosed with social anxiety and panic disorder, and discovering via a DNA test that my dad was not my biological father. now, this. weeeeeeeeeeeeeeeeee!
ya know what? rather than this knowledge being traumatic, it has been really helpful. enlightening. like fitting the pieces of a puzzle together. that satisfying almost silent little click.
for those of you on your own journeys,good luck and i wish you the best ♥
posted by lapolla at 3:55 PM on September 18, 2022 [12 favorites]
last night, i went down the rabbit hole of taking allllllllll the online tests i could find.
I kind of think that spending a night taking all the online tests should in itself be considered an indicator. ;)
posted by heatherlogan at 6:44 PM on September 18, 2022 [6 favorites]
I kind of think that spending a night taking all the online tests should in itself be considered an indicator. ;)
posted by heatherlogan at 6:44 PM on September 18, 2022 [6 favorites]
lapolla, I'm so happy for you! ❤️❤️❤️❤️
I am going through the same process myself, although I have chosen not to be formally diagnosed.
It's so amazing to find this way of thinking about myself that makes sense of just about everything about myself that previously didn't make sense to me.
I keep having these light bulb moments, thinking back over my life. "oh, that's why I did that."
posted by Zumbador at 9:04 PM on September 18, 2022 [5 favorites]
I am going through the same process myself, although I have chosen not to be formally diagnosed.
It's so amazing to find this way of thinking about myself that makes sense of just about everything about myself that previously didn't make sense to me.
I keep having these light bulb moments, thinking back over my life. "oh, that's why I did that."
posted by Zumbador at 9:04 PM on September 18, 2022 [5 favorites]
I always used to think I was autistic because I had social difficulties and lack of eye contact but that has completely changed over the last decade but now they are diagnosing me with it and I'm not sure I identify with autism any more ... Part of the reason the psychiatrist I see want to say I have it is because I went through a phase of challenging various social taboos but this wasn't due to a lack of understanding if that makes sense. Does this sound valid?
posted by an opinicus at 9:48 AM on September 20, 2022
posted by an opinicus at 9:48 AM on September 20, 2022
I went through a phase of challenging various social taboos but this wasn't due to a lack of understanding if that makes sense.
One of the topics of discussion that's been going around autistic Twitter recently is that many of us recognize and understand such things, we just don't agree with them or choose to cooperate. One example (there have been many, this is just the first one I was able to find again):
One of the topics of discussion that's been going around autistic Twitter recently is that many of us recognize and understand such things, we just don't agree with them or choose to cooperate. One example (there have been many, this is just the first one I was able to find again):
@AutisticCallum_:posted by Lexica at 10:32 AM on September 20, 2022 [10 favorites]
Society: “autistic people do not understand hierarchies”.
Me: *knows that hierarchies exist and understands how they operate, but doesn’t value them and doesn’t believe any human is: a) more important than another; or b) should mistreat/exploit those “lower down” the hierarchy*.
Man, I’m relating hard to that anti-hierarchy sentiment. That is pretty much exactly how I feel about them. It has always befuddled people who tried to exercise any authority over me.
posted by wabbittwax at 11:00 AM on September 20, 2022 [1 favorite]
posted by wabbittwax at 11:00 AM on September 20, 2022 [1 favorite]
I believe in hierarchies of competence. Because although it seems completely axiomatic to me that no human being is inherently more valuable than any other, it is demonstrably the case that all of us have different skill sets from our peers; from which it seems to me to follow that when groups of us work together to get stuff done, the people who know more, understand more and/or have more experience with whatever that stuff is should have more say over what gets done and how than those with less. Expertise is real, and failing to value it is how we end up with fucknuckles like Jacob Rees-Mogg being given the opportunity to destroy the livelihoods of millions of others.
I do not believe that having more experience purely at being in charge of stuff should, in and of itself, entitle anybody to a spot near the top of any hierarchy. Because that's the kind of positive feedback loop that winds up creating kings and billionaire CEOs, and those have proved to be on the whole socially toxic.
Further, it seems to me that one of the primary duties of anybody in the upper reaches of any hierarchy ought to be to spread their skills downward through it, so as to make their own position redundant as quickly as possible.
I am perfectly happy to defer to the authority of somebody more competent than me when engaged in e.g. extinguishing a structure fire. Getting face down on the ground for no better reason than that some self-aggrandizing little jobsworth in fancy dress demands that I do, not so much. That, I would bitterly resent and do only under duress.
posted by flabdablet at 12:03 PM on September 20, 2022 [7 favorites]
I do not believe that having more experience purely at being in charge of stuff should, in and of itself, entitle anybody to a spot near the top of any hierarchy. Because that's the kind of positive feedback loop that winds up creating kings and billionaire CEOs, and those have proved to be on the whole socially toxic.
Further, it seems to me that one of the primary duties of anybody in the upper reaches of any hierarchy ought to be to spread their skills downward through it, so as to make their own position redundant as quickly as possible.
I am perfectly happy to defer to the authority of somebody more competent than me when engaged in e.g. extinguishing a structure fire. Getting face down on the ground for no better reason than that some self-aggrandizing little jobsworth in fancy dress demands that I do, not so much. That, I would bitterly resent and do only under duress.
posted by flabdablet at 12:03 PM on September 20, 2022 [7 favorites]
It's one of my light bulb moments, remembering that the moment I became aware of my lack of awareness of hierarchy at my teaching job many years ago. Long before I knew I am autistic.
I understood the hierarchy in theory, could tell you who was higher than me and how that should influence my behaviour.
But it was just something I understood in theory. It did not come naturally to me and I was always doing stuff that I would only afterwards realise was probably seen as disrespectful.
Like so many other social cues, the hierarchy and how to act in relation to it, is something that people around me can sense automatically without trying to, and I just didn't pick up on.
In my case it coincides with a lack of respect for an arbitrary hierarchy, but I don't think that lack of respect is the cause so much as my inability to read people.
I don't think I have an innate sense of justice because I'm autistic? I certainly have a pretty rigid idea of what's acceptable and maybe that can look like a sense of justice if I happen to have the "right" principles?
posted by Zumbador at 1:09 PM on September 20, 2022 [1 favorite]
I understood the hierarchy in theory, could tell you who was higher than me and how that should influence my behaviour.
But it was just something I understood in theory. It did not come naturally to me and I was always doing stuff that I would only afterwards realise was probably seen as disrespectful.
Like so many other social cues, the hierarchy and how to act in relation to it, is something that people around me can sense automatically without trying to, and I just didn't pick up on.
In my case it coincides with a lack of respect for an arbitrary hierarchy, but I don't think that lack of respect is the cause so much as my inability to read people.
I don't think I have an innate sense of justice because I'm autistic? I certainly have a pretty rigid idea of what's acceptable and maybe that can look like a sense of justice if I happen to have the "right" principles?
posted by Zumbador at 1:09 PM on September 20, 2022 [1 favorite]
I always figured the rigid ideas of justice came from the fact that understanding and predicting human behavior for autistic people often means forming explicit mental models of what the rules are -- or should be. When you're making a concept explicit to yourself, that often invites a much deeper and more three dimensional understanding of what that concept is.
(I do think it's also... I think autistic people generally are worse about intuiting unfamiliar cultural rules or unspoken expectations. At the same time, once you've largely encountered a rule in the context of being scolded for violating it, looking for reasons that the rule is actually bullshit and the people who keep being aggressive about you breaking it are assholes becomes REALLY inviting. If you can marshal a good reason that the rule sucks, you might be able to convince the other person to get off your back.
Which is to say, small disparities in learning can crystallize into larger differences in outlook and strategy, which can lead to different conclusions about how we should behave to one another. At the same time, divergent strategies can also be equally successful, such that they're not immediately obvious from evaluating outcomes.)
I was leading a journal club the other day for my undergrads, actually, in which I'm trying to teach them about the genetic mouse models we're working with on behavioral experiments... which are, essentially, mirrors of one another. One variant is a deletion of a region of DNA, and the other is a duplication of the same region. In humans, autism is frequently associated with both variants, and so is ADHD, so one of my students asked me: is it possible that one might be associated with more inattentive ADHD and might one be more likely to be found in the hyperactive subtype? (I currently have no idea but am intending to check.)
So that lead us into a pretty gratifying discussion of spiky variants and deficits of wildly varying levels at different skills. I dropped that old "meatloaf at the joints" quip, the one I swear is older than the DSM-V--but that's who everyone cites it to these days! I keep thinking it must be a Jim Sinclair -ism but I can't find it. And I had quite a good time nudging them to think about how gene functions in the Mendelian sense can be predicted once you know what a protein actually does, and then broke it to them that we have very little idea what some of the ones in our region of study even do.
posted by sciatrix at 6:39 PM on September 20, 2022 [3 favorites]
(I do think it's also... I think autistic people generally are worse about intuiting unfamiliar cultural rules or unspoken expectations. At the same time, once you've largely encountered a rule in the context of being scolded for violating it, looking for reasons that the rule is actually bullshit and the people who keep being aggressive about you breaking it are assholes becomes REALLY inviting. If you can marshal a good reason that the rule sucks, you might be able to convince the other person to get off your back.
Which is to say, small disparities in learning can crystallize into larger differences in outlook and strategy, which can lead to different conclusions about how we should behave to one another. At the same time, divergent strategies can also be equally successful, such that they're not immediately obvious from evaluating outcomes.)
I was leading a journal club the other day for my undergrads, actually, in which I'm trying to teach them about the genetic mouse models we're working with on behavioral experiments... which are, essentially, mirrors of one another. One variant is a deletion of a region of DNA, and the other is a duplication of the same region. In humans, autism is frequently associated with both variants, and so is ADHD, so one of my students asked me: is it possible that one might be associated with more inattentive ADHD and might one be more likely to be found in the hyperactive subtype? (I currently have no idea but am intending to check.)
So that lead us into a pretty gratifying discussion of spiky variants and deficits of wildly varying levels at different skills. I dropped that old "meatloaf at the joints" quip, the one I swear is older than the DSM-V--but that's who everyone cites it to these days! I keep thinking it must be a Jim Sinclair -ism but I can't find it. And I had quite a good time nudging them to think about how gene functions in the Mendelian sense can be predicted once you know what a protein actually does, and then broke it to them that we have very little idea what some of the ones in our region of study even do.
posted by sciatrix at 6:39 PM on September 20, 2022 [3 favorites]
When you're making a concept explicit to yourself, that often invites a much deeper and more three dimensional understanding of what that concept is.
This rings true.
Also for the phenomenon of having to start at the detail level conceptually, and work my way up the conceptual tree, as it were, to grasp more complex concepts.
Most people seem to intuit the meaning without having to dig down to the roots. Or they think they do, but when you ask them to unpack the deeper meaning they flounder, because they have never needed to think about it.
posted by Zumbador at 9:07 PM on September 20, 2022 [2 favorites]
This rings true.
Also for the phenomenon of having to start at the detail level conceptually, and work my way up the conceptual tree, as it were, to grasp more complex concepts.
Most people seem to intuit the meaning without having to dig down to the roots. Or they think they do, but when you ask them to unpack the deeper meaning they flounder, because they have never needed to think about it.
posted by Zumbador at 9:07 PM on September 20, 2022 [2 favorites]
The single most valuable thing I learned from having gone mad is that feeling that a thing is so - even feeling it to what feels like the very core of the soul - is in no way a guarantee that the thing genuinely is so.
It seems likely to me that people who have not actually had to deal with existing in states of consciousness considered unusual by their peers would never have been forced to accept this disconcerting truth. And it is disconcerting. Quite horribly so. It completely cuts the legs out from under complacency, and complacency is a hell of a drug.
start at the detail level conceptually, and work my way up the conceptual tree, as it were, to grasp more complex concepts
Seems to me that this is pretty much the only way any complex concept actually gets properly grasped. Trying to do it by starting with some broad abstraction and then successively refining the details invites being swamped by confirmation bias and wonky metaphor at every step, to the point where there can arise an almost complete loss of the ability to grasp the bleedin' obvious.
And when you've got a large community of people most of whom think broadly the same way and most of whom do work habitually in top-down abstraction and metaphor, that inability to grasp the bleedin' obvious can pretty easy become taken for "common sense".
posted by flabdablet at 9:29 PM on September 20, 2022 [2 favorites]
It seems likely to me that people who have not actually had to deal with existing in states of consciousness considered unusual by their peers would never have been forced to accept this disconcerting truth. And it is disconcerting. Quite horribly so. It completely cuts the legs out from under complacency, and complacency is a hell of a drug.
start at the detail level conceptually, and work my way up the conceptual tree, as it were, to grasp more complex concepts
Seems to me that this is pretty much the only way any complex concept actually gets properly grasped. Trying to do it by starting with some broad abstraction and then successively refining the details invites being swamped by confirmation bias and wonky metaphor at every step, to the point where there can arise an almost complete loss of the ability to grasp the bleedin' obvious.
And when you've got a large community of people most of whom think broadly the same way and most of whom do work habitually in top-down abstraction and metaphor, that inability to grasp the bleedin' obvious can pretty easy become taken for "common sense".
posted by flabdablet at 9:29 PM on September 20, 2022 [2 favorites]
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Also pretty sure it's at least as deserving of a yearly front page appearance as the traditional cat scan and caps lock day posts.
Thanks, aniola.
posted by flabdablet at 11:04 AM on September 17, 2022 [13 favorites]