“It’s a Spectrum” Doesn’t Mean What You Think
- Type: TiNe
- Development: l--l
- Attitude: Adaptive
But wouldn’t this now make autism an umbrella term? These traits (i.e. monotropic mindset, neuro-motor differences, sensory processing, etc) …could they not be caused by totally different neurological/biological mechanisms…? ..making them essentially different disorders? Or are all these varied spectrum traits emergent effects of the same/one ‘autism’ gene(s)/biochemistry/disorder… and thus making it appropriate to group them together under the same condition? And how do we know this?
It seems like “autism” in this article just means being neurodiverse… in some form. In other words, varying from ‘norm’ in any one of a dozen ways. Is that the jist of it? o.o
Also, pardon my ignorance.
- Type: NeFi
- Development: l--l
- Attitude: Seelie
You’re absolutely right. That’s exactly what it’s become, as is typical with psychology. It used to frustrate me to no end, but it helps that there’s a saying “If you’ve seen one person with autism, you’ve seen one person with autism,” so people are beginning to understand.
Maybe this adds to the picture. Introspection.
BUT, the medical dysfunction model (within which the study above is framed), is contentious. Ugh, it’s patronizing crap. Measuring degree of introspection has potential as a tool for identifying autists , but no, we’re not faulty. Geez, let me write an article “Allistics shown to have significantly reduced brain activity at rest.” “Allistics found to have compromised capacity for defining human trait: the ability to introspect.”
The documented history of autism has been written by (predominantly allistic) people observing behaviour from the outside. It’s akin to an ethnic frontier, in which ‘civilised’ explorers propose all sorts of dehumanising theories to account for ‘inferior’ cultural practices and/or physical traits.
Autism is part of the human experience. Autistic brains are human brains. Autistic bodies are human bodies. Autistic minds are human minds.
Auburn, I haven’t really answered your questions. I don’t quite know what you’re asking… we’re all navigating fields of ignorance. But, if you’re looking at Autism as a class of aberrant cognition, it isn’t. I believe it fits within the model you’re developing. The Autistic experience is a matter of amplitude.
I don’t really know where all the terms you mention fit in the picture, because they are questionable terms. To which lived experience(s) do they really apply? They are observer-centric, subject to observer-prejudice, flawed paradigms, dubious rationale. If I had access to this article I’m sure it would be interesting:
…and this piece is so well written, please, everyone, read it!
- This reply was modified 1 year, 1 month ago by Aux.
Oh, wait, Auburn. Yes, Autism is a form of Neurodivergence :p
Rondo, did you delete your post?
I received it via email and really enjoyed reading it. Gave me lots to think about. You have had experiences different to mine and the perspective from them is valuable. I think that was one of the most eloquent points made by the author of the last link. We each struggle to escape our neurocentric well and imagine what lies beyond and what may be the truth of others.
I think the neurodivergence paradigm has become a life-raft for a group that has been marginalised, excluded and misunderstood over time. It allows autistics to share a common language… to be able to parse our position and navigate. I’m grateful for the language, but I see from your misgivings, that it isn’t without pitfalls. When correcting a position, it is hard to know how far is too far, and I think in all likelyhood many advocates will go so far as to alienate some we wish to embrace. Still others will feel that they cannot go far enough. There is anger there, in the movement, some of it generations deep. And it is a human struggle to know how to let go of that anger and let wounds heal. Some will find that compassionate position sooner than others.
For myself, I wish to see autism accepted as a normal and valuable human neurotype. In a species with such neurological and cognitive diversity, I’d like to say we all have value. That we all belong. That our experiences are all part of the human experience. And under the old models, autists have been denied (ironically, yes) human autonomy. A model of neurodiversity, however, places us all somewhere on the same map. On this map there are clusters of ‘wells’; of neurological perspectives. They form sets and subsets within the terrain. Some could be described as cities, ghettos, towns or villages, some as lonely outposts or individual lighthouses, and we kind of need names to identify these places.
‘Neurotypical’ has, and will, be used in cutting riposte and even attack, in a fight for recognition as autists attempt to redress subjugation. I hope it moves quickly beyond this, to mutual acceptance; to greater healing. Having excised autistic experience (among many others), the dominant psyche is incomplete. Welcoming autistic experience back into the fold of ‘normal’, is an act of self-acceptance.
Rondo, I’m sorry to be unable to comment on your experience of the value of Theory of Mind in the critical circumstances you described. I don’t have the experience to know… far out of my depth. I will trust your self-knowledge.RuaModerator
- Type: NeTi
- Development: ll-l
- Attitude: Adaptive
So much to think about in your latest response! Yes, I did remove my post, but I will restore it (I was frustrated by my writing because while I felt almost certain that we were in agreement on the most important points, the body of my response felt too argumentative for my liking). But, I’m so glad it was useful to you!
(Aux was kind enough to provide my own post to me XD. So, for those who want to follow the thread chronologically, read this section in brackets right below this paragraph and pretend it was posted prior to Aux’s response above ^^(which it originally was). So, with very minimal edits to the beginning of the first and last paragraphs, as well as some inevitable typographical corrections, here was my response:)
[I’d like to chime in if that’s alright Aux. I wanted to first say that I 100% agree with the main thing I think you are saying, which is that Autism has a long and storied history within the human condition, and that these different neurochemistries enrich the human experience. I think that there have likely been many scientific, philosophical, artistic, mathematical breakthroughs throughout history that we would easily recognize as some form of Autistic achievement today, and I think there is a strong argument to be put forward that Autism has weathered the test of time and is a part of the human genome that might even be being selected for in an increasingly technological society.
With that being said, I can’t help but feel that this language of ”neurotypical” and ”neurodivergent” is deeply unhelpful, but perhaps I am not the target audience there. My own experience with Autistic individuals began when I was a child living in a house with an Autistic boy for over a year, and I learned a lot about how I had to mold my behavior so as not to disrupt him, never expecting that the opposite should occur. I distinctly remember he loved racing to the school bus each morning, delighting in his victories. I would always let him have those moments, because clearly they mattered much more to him (was my theory of mind here a disability?), and the one day that I won he became extremely upset, so I never did that again. For me, I don’t pretend to know what someone else is feeling, I can only intake as much data as possible, and then see what shape the pattern takes. However, the article you linked at the end seems like it would rather make me fool foolish/ashamed for attempting to understand an Autistic individual through such universal concepts as language, behaviors, and emotions; lacking a highly sophisticated brain-scanner though, what more is expected from a “neurotypical” in this regard? And, to add further to where I am coming from through my experience: when I worked in the ER there were certain Autistic individuals that the system knew immediately needed ”1:1” care, and though it wasn’t as much as I would have liked it to be, there was an understanding that they did have different needs. By watching one of our amazing triage staff work with Autistic individuals I learned a lot about what not to assume, and how to take things one step at a time and be constantly open to adjusting perspective (was my theory of mind here also a disability?).
Personally, I would take the saying, “If you’ve seen one person with autism, you’ve seen one person with autism,” even further: I don’t believe I’ve ever met a “neurotypical”, I’ve only met individual human beings that are all uniquely flawed and struggling. The same person who might make an ignorant comment to an Autistic person in the street might cry themselves to sleep every night, wishing they were dead but not knowing how to get there (does MDD and acute suicidality change one’s “neurotypical” status? As most human beings are not majorly depressed or suicidal, would this not qualify the individual for “neurotypical” status?). It seems to me there is something of a reverse-shaming mechanism inherent in the language of neurodivergent and neurotypical, whereby the ”script is flipped” and “allistic” individuals are being informed to feel as though they are fundamentally lacking in empathy or a real understanding of humanity (which includes Autistics). There seems to be an underlying resentment of the larger, non-Autistic society that is expressed by the writers of the first and last articles you linked, and I don’t think that kind of broadly shaming or resentful attitude is actually helpful towards bringing these two groups together in understanding (rather than a mutual labeling on both sides). I was told many things about myself by these writers that I feel to be untrue, and would never want to do the same to someone else, regardless of their Autistic status.
To show what I mean, I was told by the writer of the last article that this is my attitude as an allistic individual, ”A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.”]
But, I must say that your response brought home an understanding of the resentment I detected in the articles (and that the articles themselves did not accomplish for me). If I’m understanding it correctly, it seems like it would be frustrating beyond measure for an Autistic individual to be constantly expected to conform to allistic standards, when non-Autistic individuals (who are far more numerous and the dominating cultural force) could adapt themselves to Autistic individuals with much greater ease than the reverse, but they are simply ignorant of this or do not care. Yes, I think that awful dynamic must often feel like banging one’s head against a brick wall, and it would take a long time to get over how deeply unfair it is (if ever for some). Wow, ty once again for the response 🙂
Edit: Welp, nvm, you learn something new every day. Dunno how to restore that old post after another response is made, and I forgot to copy-paste it somewhere first! But, it reached you anyway so that’s good!Shelley LorraineParticipant
- Type: NeFi
- Development: ll--
- Attitude: Seelie
@Aux I’ve been hesitant to comment on this thread because I am trying to un-highlight my ASD diagnosis. It used to be a regular topic on my blog, but I’ve pulled all those posts and no longer blog about it. I am certainly neurodivergent, but am I really on the spectrum? Too many people laugh it off when I say I have a diagnosis, saying “lol, psychologists hand out ASD diagnoses these days like candy.” After a particularly stressful encounter with someone aggressively denying that I show any signs of an ASD, I decided to no longer advertise it. It’s too much stress for me and frankly, I have no idea if I was misdiagnosed. Telling people I have an ASD has done me no more good than not. And yet, ironically, the reason I sought out a psychologist was because friends and family kept suggesting that I am on the spectrum. Even a college professor took me aside and suggested it, adding that I was probably a bad fit for the teaching program I was in because of it.
It was (and still is) arbitrarily used as an insult against me when convenient and denied me when not, so I figured I’d at least like to know which it is so I can defend against one or the other. Nothing has changed now that I am diagnosed. If I’m in an argument and the other persons feelings are hurt, it’s suddenly because I have no empathy as an autistic. If i’m struggling with a sensory processing issue, I’m just exaggerating and probably making it up. It’s maddening 😩
I brought up the theory of mind thing to my psychologist as one of the primary considerations, imo, against my being on the spectrum. I *think* I have an excellent theory of mind. However, I didn’t used to. I remember quite clearly, and shamefully, the days before I could employ cognitive empathy. It’s something that developed when I was in high school. I don’t know what that signifies, but it is what it is. But anyway, my psychologist said that theory of mind in autistics is poorly understood and that many have a heightened sense of empathy, though they may struggle to show it. This I can relate to. I feel so much more than I am able to express.
I can only say, with confidence, that I am neurodiverse. Perhaps I have a myriad of symptoms that mimic ASD. Whatever they are, I have grown and adapted a lot since my more obvious socially-deviant days, so I really ought to take it as a compliment and testament to my self-growth that the outward expression of my supposed ASD is no longer obvious.
I also want to say that I really appreciate the links you’ve shared here, specially the one about a spectrum vs a gradient.
Thank you Rondo and Shelley!
That’s about it, Rondo, it runs deep! (And I’m very happy you found my reply helpful.)
While I don’t believe autism is a disease, it is a disability. Autists are at a grave disadvantage in navigating life, and much of that disadvantage is social. The failure of meaningful social connection isn’t just down to autists not learning the ‘right’ skills, there’s a split-second decision on the allistic side that the autist is not worth engaging with. Some research documented here:
Hmmm… whether it’s easier or not for allists to learn to bypass this unconscious prejudice, I don’t know. But I do know the cost of autistic masking (attempting to pass as socially typical). It’s exhausting. The energy expenditure is high and gets harder to sustain as time passes. Hello, nervous breakdowns aka Autistic burnout. The unremitting anxiety corrodes well-being. Levels of stress hormones – the underlying cause of many health disorders – are always high. Mental health problems, suicidal tendencies, become loyal companions. Not that you have to be autistic to suffer, but the autistic experience highlights the fragility of the human condition – call us the canaries in the coal mine! If your autists are sick, your society is inhumane, and everyone suffers. As I found so enlightening when I first started reading the words of other autists (paraphrased) I realised that life wasn’t hard because I was depressed and anxious… I was depressed and anxious because life was hard!
What does it all add up to? We die earlier, on average. Apparently 16 years younger, though that increases if there is also a cognitive disability involved. https://www.healthline.com/health-news/why-people-with-autism-die-at-younger-age#1
But I don’t see it as an us and them kind of war – I think we all need to treat ourselves with more compassion, find a way to communicate ideas (thank you internet!), slow down and just marvel at how wondrous a human life is. Look at the stars. Breathe.
I can send you a copy of your original post, Rondo. Thanks for sharing. 🙂
Oh, the things I could write about head-banging… because sometimes there is no way to verbalise the emotional and cognitive torment, and all that’s trapped inside has to be expressed, any way possible through movement and focus… the physical pain overwhelms the internal pain and all can become quiet for a time.
Shelley Lorraine, thanks for your voice, let me reply to you when I gather some more energy for writing. 🙂
Autism and Behaviorism
New Research Adds to an Already Compelling Case Against ABA
Autistic People. So, new Research. Different social skills, not broken ones. – Ann’s Autism BlogAnimalParticipant
- Type: SeFi
- Development: lll-
- Attitude: Unseelie
As a child my parents suspected I might be autistic. Here are a few reasons:
- I took things too literally. I heard my mother call me “you” and call herself “I,” so I called myself “you” and called her “I.”
- Before I could speak (which I did early), I memorized books. She would read to me and if she missed or replaced one word, I would react negatively.
- I had severe social issues for no clear reason. It lead to me having to leave the school due to violence against me when I was 12. But I had no clue what had happened. In retrospect, some of this was systemic racism against Jews, but my brother for instance did not have these problems. He learned to navigate culture with ease and I didn’t.
- Obsessive behaviors, repetitive responses, hyper focus at the expense of all else? Check.
- Oversensitive to stimuli: this is the understatement of the century. I have to wear earplugs at normal social events. I could blame this on Lyme “hyperacusis” but I’ve always been like this. Oversensitive in every way. HYPER sensitive to stimulus. But at the same time, I don’t get offended over words. So I’m not over sensitive in THAT way.
- Word finding problems. The truth of this is that I have no problem finding words that make sense to me, but my wording is socially unacceptable and different from how others word things. It can range from others being unable to read what I wrote, when it makes perfect sense to me; to others being infuriated and offended by all the supposed implications in my words that I was unaware of. “I say it like it is,” I defend myself. I didn’t see hidden implications at all, and this gets me in trouble. My husband helps me edit out implications and ‘how others might read’ what I wrote. I’ve worked EXTREMELY hard on this in order to write my books in English. The word finding does get harder when I’m sick, but this is because I lose the ability to quickly translate “Animal-speak” to “English.”
- As a consequence of the last paragraph, people often find my words offensive. I do much better in person because people can see on my facial expression that nothing changed and I had no idea something was mean.
- Passive aggression directed at me flies right over my head. One example is, as a kid, my aunt “forced a smile” and I told my mom “She’s so nice! She likes me!” but clearly she hated children and was forcing a dishonest smile. I have memorized these cues by now so I can tell the difference, but it comes from study, not innate ability. However, it does feel natural for me to read body language today, but I’m picking up INTRApersonal stuff (what that person is about) rather than INTERpersonal stuff (communication between them and other parties, myself included).
- In early school, before I got very sick at 16, I had an excellent memory. I never had to study and could just recite everything the teacher said, or everything I read in a history book. I was also a math wiz. I figured out complex music theory by myself at 10 or 11, and it was all math. I received outlandishly high scores when tested on this in a professional setting. Getting sick changed the ability to figure these things out. But the point is, I had savant abilities (in songwriting too, and world class musicians who my family knows were impressed by the songs I was writing at age 8-12)…. but socially I was a total flop.
On the other hand, I can watch events unfold over time and get a very strong sense of INTRApersonal things like someone’s hidden motives, how they behave in a group, the impact of their behavior on the people around them, the patterns of behavior that occur. I can guess exactly what will happen next once this person enters a relationship or a scene with someone else. I know how relationships will pan out, how compatible two people will be, whether it’s the right group for them etc. For this reason people have told me I’m psychic. But immediate interpersonal communication can fly over my head. It may be that these instances are not separate. Perhaps, since I miss the small implications of how someone speaks to me, I trained myself to watch what they actually do. And not to take words at face value, but to notice what that person is really about. In my writing, the attention to tone, body language and eyes reads very well. Although I have other issues with words, even when I was a horrible writer, people could picture the characters in my work and how they move, what they’re about… I was very good at conveying this. So why is it that I can pick up and convey subtleties in a person so organically and smoothly, and yet I can’t tell if their smile is genuine in real life? Or maybe I can by now? It’s very confusing. Anyway, I’ve managed to escape any diagnoses, although to be fair, I have not looked into this with a psychiatrist.
I don’t want anyone to be forced to adjust to me. I’d prefer if they get offended so I can modify my behavior to be more acceptable if I so choose. Events unfold naturally and I learn from them. To tip-toe around me would be to take my own power away. Now, I am not commenting on others when I say this. People who are more severe than me in particular ways may require more careful attention from others – but personally, I want the truth. You think I acted unacceptably? Thanks for letting me know! This teaches me something about the social world, and myself.
Thank you for sharing, Animal. I’d like to think that I can see the depth of effort (intention, energy and courage) in translating and telling your story. I wish I could respond in depth with my own thoughts and experience, but there’s not enough of me to compose something – I’m still wanting the right alignment of factors to give me the momentum to respond to Shelley Lorraine also!
Maybe it’s the ‘lazy’ option, but I want to share something from another autistic writer, something that I just read. Her words speak to me and I hope they speak to you too, in all your neurodivergent glory, @shelley-lorraine @Animal.
“Sometimes people tell me that I am the only Autistic adult they know. I tell them that I think they do know others, but those people haven’t disclosed to them, preferring to do their best to blend in as much as they can.
A tricky thing about being Autistic is that we are socialised to think it means we are so completely different that it’s going to be totally obvious. But in reality, there is nothing we experience or do as Autistic people that is outside what the normal experience of being human includes. It’s just that we experience things with more intensity and at higher frequency, and this influences our behaviour. For some of us this means we are easily noticed by others as being different. For some of us this is not the case, and we “hide in plain sight”.
The world we live in now is incredibly difficult for Autistic people because it has become so full on in sensory and social ways, and in order to blend in we have to push ourselves past what we can easily cope with to be included. Even the DSM, which is not an ideal tool in many ways, acknowledges that autism goes unidentified until a persons capacity to cope (ie mask) is exhausted.
So, when we begin our process of self discovery it’s really difficult to not have to go through thinking that maybe we are just making it all up because we aren’t that different than everyone else! And we aren’t. Until we look deeper. And that’s what has to happen.
People who become confident to self identify as Autistic, or to make themselves vulnerable to the medical, pathologising diagnostic assessment process, are remarkably resilient, in that we have come to a point of self understanding that is uncommon in humans, and are willing to talk about it. It’s like learning to see yourself in full colour instead of just black and white. Once you see the detail, the shades, the tones, the highlights, the nuances, you understand so much better, and you want to share that understanding with others.
The Autistic community is amazing in many ways, but it’s this that continually astounds me- we are are some of the strongest, most self aware, and most resilient people. We often apply our strength to doing what it takes to keep others around us happy instead of looking after our own needs though, and we are also some of the most self critical and self deprecating, simply because we’ve been socialised to doubt ourselves for being different. Which is ironic both because we are different, and we aren’t. It’s a really tough place to be, socially and internally.
One of my greatest wishes is that I could help people through the process of increased self understanding, but it’s one we all have to do for ourselves in our own ways. Sharing our stories certainly helps, and that’s why I and so many Autistic people make ourselves publicly vulnerable, but ultimately each Autistic person is on their own self discovery path.”
– Michelle Swan, autistic educator
Not sure if the video will work outside of Australia, but the article is worth a read. 🙂
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