Mastodawn

Autistrain Jan 1, 2024

I saw that a study says that #actuallyAutistic don't like going outside in nature. Well, nature is a must for our mental health! I love the botanical garden. It provides good visual stimming.

The other point is that I hike quite a lot and being in nature is vital for my anxiety.

It's another good example of how we are misunderstood. It's another example of how we are seen as a deficit. It's totally dehumanizing us. We are human with human needs. It's not because somes don't understand our cognition that we aren't fully human.

@actuallyautistic @neurodiversity

Semi Sentient AI Cooling Water Jan 1, 2024

@Autistrain @actuallyautistic @neurodiversity Was the study conducted by allistics by any chance?

Lifelong nature lover & autistic.

Autistrain Jan 1, 2024

@sentient_water

I read it yesterday and don't remember clearly. To do some sarcasm, I could answer “I assume”.

@actuallyautistic @neurodiversity

Aerliss Jan 1, 2024

@Autistrain @sentient_water @neurodiversity could you poke through your browser history to see if you can find it again? I've spent some time on various search engines, including Google scholar, but using the word "nature" throws up a lot of "the nature of x in autism" type articles.

Semi Sentient AI Cooling Water Jan 2, 2024

@Aerliss @Autistrain @neurodiversity This isn't the one I'm talking about but it illustrates the same point.

https://www.sciencedaily.com/releases/2014/01/140131130630.htm

Autistic brains create more information at rest, study show

New research finds that the brains of autistic children generate more information at rest -- a 42 percent increase on average. The study offers a scientific explanation for the most typical characteristic of autism -- withdrawal into one's own inner world. The excess production of information may explain a child's detachment from their environment.

ScienceDaily

Aerliss Jan 2, 2024

@sentient_water @Autistrain @neurodiversity thank you! You're a star. I'll have a read over my next cup of tea.

Semi Sentient AI Cooling Water Jan 2, 2024

@Aerliss @Autistrain @neurodiversity Found this other one too. Where the fact that we have more neurons in our prefrontal cortex is still pathologized!

https://www.spectrumnews.org/news/autism-brains-have-too-many-neurons-study-suggests/

Autism brains have too many neurons, study suggests

Children with autism have an abnormally large number of neurons in the prefrontal cortex, a brain region important for abstract thinking…

Spectrum | Autism Research News

Semi Sentient AI Cooling Water Jan 2, 2024

@Aerliss @Autistrain @neurodiversity This seems to be like saying your computer is broken because it's got too much RAM & memory.

Robbert van Eijndhoven Jan 2, 2024

@sentient_water @Aerliss @Autistrain @neurodiversity

It really isn't.

Brain development comes in two phases.

From birth through childhood, the amount of neurons people have increases steadily, forming pathways based on our experiences and sensations.

But from puberty to maturity, the number of neurons decreases through a process called synaptic pruning, where the pathways get trimmed down in order to get rid of 'cross wiring' and synaptic 'dead ends'.

Robbert van Eijndhoven Jan 2, 2024

@sentient_water @Aerliss @Autistrain @neurodiversity

Having more neurons, therefore, doesn't make you smarter.

It's less like having more RAM and more (but not exactly) like having the RAM connected with multiple cables, so that your RAM keeps getting conflicting or fragmented inputs because the signals don't all take the same route and don't all arrive when they're expected to.

Semi Sentient AI Cooling Water Jan 2, 2024

@robrecht @Aerliss @Autistrain @neurodiversity I don't think the paper or me said it made you "smarter" in case you missed the start of this thread it's about how nearly all studies of autism view every single aspect of being autistic through a medicalised, pathologized lens.

Robbert van Eijndhoven Jan 2, 2024

@sentient_water @Aerliss @Autistrain @neurodiversity

I'm sorry in advance at the sheer nastiness of this response, but I threw out my back earlier today and it hurts enough that I feel nauseous, so I'm in a terrible mood:

Oh, gee, a medical study by medical doctors medicalises things? Golly how absolutely awful.

Damn experts and their narrow field of focus! When the fire safety inspector wrote a report on my apartment block it said absolutely nothing about my interior decorating choices! 😒

Robbert van Eijndhoven Jan 2, 2024

@sentient_water @Aerliss @Autistrain @neurodiversity

Again, I'm sorry, but this is unavoidable. If a group of neurologists does research into autism, they're going to focus on the neurological aspects of autism.

And that's going to involve a lot of medical jargon, because they're doctors (and/or professors) of medicine.

Ferrous Jan 3, 2024

@robrecht
The point is that there's a very consistent pattern in autism research of *assuming* autistic differences are deficits, or somehow automatically wrong.

@petercrosbie put together a great piece about this here a few years ago:
https://www.autism-advantage.com/autistics-less-biased.-researchers.html

@sentient_water @Aerliss @Autistrain @neurodiversity

Autistics: less biased. Researchers?

The Autism Advantage. Cognitive fallacies and biases in research with autistic subjects. Are researchers more biased than autists?

@robrecht
There's a very recent paper here showing how this keeps happening in verbal fluency research, and how looking at it in terms of #monotropism (or just generally identifying and questioning implicit assumptions) allows for completely different interpretations of the same data.

https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.3071
@petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Robbert van Eijndhoven Jan 3, 2024

@ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Thing is, Fergus...

This actually kinda highlights my issue.

Most medical autism research is focussed on ASD, the diagnosable mental health disorder that occurs in some autists.

Monotropism is a theory (with it's own flaws) regarding the autistic neurotype, including those for whom it doesn't lead to a disorder...

And...

Robbert van Eijndhoven Jan 3, 2024

@ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

I understand why people who identify with the autistic neurotype are not best pleased with the way medical research pathologises autism, I really do. I don't like it either.

But at the same time... A lot of the time they /aren't/ pathologising autism the neurotype, they're pathologising ASD, the mental disorder, which legitimately is a pathology.

This distinction is important to me because...

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity I'm not sure how adding the word "disorder" to something actually makes it a disorder.

If someone frames my love of computers as "specific routine and becomes disturbed at the slightest change" and says "hah, disorder!", is it now fair to frame it as a pathology?

Robbert van Eijndhoven Jan 3, 2024

@mnl @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Good question. The answer, really, is 'it depends'. If you do actually become disturbed at the slightest change in a way that causes you discomfort and affects you even when you don't want it to and you wish it didn't, but you have no way to prevent it, then yes, that's what constitutes a disorder.

And...

Robbert van Eijndhoven Jan 3, 2024

@mnl @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

A large part of the issue there, then, isn't that that's what psychology/psychiatry considers a disorder, but the perception that having a disorder is some kind of personal failing.

And that's not a perception that is caused by psychologists and psychiatrists, but by the general public as a whole.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

so is my focus on computers a disorder, because physicians said so, and i just shouldn't be ashamed of it because it's not a personal failing, or is the situation more nuanced maybe?

You could replace "computers" with being gay, as well.

Robbert van Eijndhoven Jan 3, 2024

Let me respond with an anecdote:

I was diagnosed with Asperger's Syndrome in 2001, at the age of 16. I spent five years telling myself and everyone else that would listen that the diagnosis was bullshit and there was nothing wrong with me, it was society that was bad.

Then I spent a year at home with autistic burnout... And the people surrounding me cared enough to remove all pressure from me.

I had no goals except the ones I set for myself and no demands from outside.

And...

Robbert van Eijndhoven Jan 3, 2024

I still had all these issues.

Issues that couldn't possibly be coming from society, because the people I cared about were intentionally providing a wall between me and any interaction with society I didn't personally seek out.

That was what awoke me to the notion that half of the stuff I was saying about how what was causing me issues was just 'who I am and that's fine' was me trying to avoid acknowledging there was a problem.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht what where the issues? because to me most of the diagnostic criteria for ASD seem to be "the world doesn't like what you're doing" much more so than "this thing causes you harm on its own".

Even things like sensory sensitivities, which surely are things that I would like to not have, how much are they a "disorder" vs. the sign of a disordered environment.

I am bipolar and while that's part of my neurotype, I much more easily see the disorder part there.

Robbert van Eijndhoven Jan 3, 2024

One example: I had executive dysfunction for things outside my special interest. Even for goals I set for myself and was deeply passionate about pursuing.

I used to blame my executive dysfunction on people making me do stuff I didn't want, but turns out that I couldn't get myself to do that stuff even when I actively wanted to.

And my special interest is stories, which sucked when the thing I wanted to do was keep my room clean so I wouldn't be embarrassed to invite my girlfriend over.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht but that's not a criteria for autism. I totally put many of my ADHD traits squarely unde "disorder", and I'm very glad that I can take a pill to make it "order".

Not making eye contact/talking about cool shit/rocking back and forth? Not harming me very much, yet pathologized.

Robbert van Eijndhoven Jan 3, 2024

That's because the criteria for ASD are not the same as the full symptomology of ASD.

The criteria are just the basic indicators that everyone with ASD has in common. Anything else can vary widely between people with ASD (and even more so when taking into account autists who don't have ASD).

That's why it's a spectrum.

Androcat Jan 3, 2024

It's like Rick Deckard says about Replicants: If they're a benefit, they're not my problem.

If you don't suffer any harm from your neurochemical makeup, it is not a disorder.

But if you do suffer harm, it IS a disorder. Very simple.

A good example from another field is Ehlers Danlos syndrome (EDS). In a nutshell it is characterized as "hypermobility that causes harm". Plenty of people have hypermobility, but do not suffer harm. It's not a pathology unless both elements are present.

And, I believe autists who need help should be helped.

You gotta remember: Pathology is not something that lessens a person's worth. It is not something that should be eradicated. It's just a property of a person that means the person needs care or assistance.

The toxic notion that pathology is bad has roots in eugenicist beliefs, which were prevalent right up to the 1970s, but which should be demolished at sight.

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

mnl mnl mnl mnl mnl Jan 3, 2024

@androcat @robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity if i get bullied, and i suffer harm from my difference, is it a disorder?

Androcat Jan 3, 2024

On the part of the bullies, probably a personality disorder.

But are you really not getting the point I made?

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

mnl mnl mnl mnl mnl Jan 3, 2024

@androcat @robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

I don't think I am, no...

Androcat Jan 3, 2024

No harm, no disorder.
Harm, disorder.

Some autists experience harm.
Others do not.

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

mnl mnl mnl mnl mnl Jan 3, 2024

@androcat @robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity so being bullied would make it a disorder, not being bullied wouldn't? am i following correctly?

Androcat Jan 3, 2024

Being bullied is an external factor. I don't understand why you are fixating on that.

Being unable to cope with stuff like bills, taxes, doctor's appointments is a harm.

Meltdowns are a harm.

Do you understand now?

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

mnl mnl mnl mnl mnl Jan 3, 2024

@androcat @robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Most the of the ASD criteria are not having trouble coping with bills, though. They're all about "abnormal behaviour" (special interests, communication, sensory differences).

Androcat Jan 3, 2024

Sure, anxiety is a separate thing.

But there are plenty of people who manage OK with communication and relationships.
If they do not suffer harm, they do not have the disorder.

But others do spend a lot of time anguishing over what other people mean, what other people expect, feeling misunderstood or rejected.

That is harm, hence it is a disorder.

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

So... There's really only two ASD criteria that have anything to do with behaviour.

There's A. which is (paraphrased) difficulties maintaining social relationships even though you do want to maintain them. And B. which is (paraphrased) some kind of repetition in action or thought that you keep doing even when you don't necessarily want to.

The other criteria have nothing to with behaviour. They are:

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

(All paraphrased to make them simpler to understand)

C: It has been this way since early childhood, not something that you developed later.

D: It's causing you significant harm.

E: It's not caused by some other condition that you may (also) have.

That last one's kinda important too, because it's where a lot of anti-psychiatry stuff comes from.

You see....

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

In order to diagnose ASD, they first have to rule out anything else that could they suspect could also be causing your issues.

That's where a lot of the 'I was misdiagnosed!' stuff comes from.

If you're clinically depressed, for instance, they first have to treat the depression. They can only diagnose ASD if the issues persist after that's under control.

But...

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

If someone quits their treatment for depression because it's not solving /all/ their issues then the psych can't diagnose autism, because the depression persists and that might still be the cause of the issues, so they'll try treatment for a different condition that involves depression.

Of course, a big part of this problem is with the psych not explaining this adequately.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity I'm not sure where you see "but you do want to maintain them" and "you do not want to keep doing this activity / thinking these thoughts" show up at least in my naive reading of https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

In any case, we agree on the meaning of disorder, I personally think that a lot of the things perceived by society at large as a disorder really isn't for me, if left to my own devices.

Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD | CDC

Learn about the standardized criteria used to help diagnose autism spectrum disorder (ASD).

Centers for Disease Control and Prevention

Androcat Jan 3, 2024

This might be obvious, but I should point out that nobody here is claiming that you personally have a disorder.
Just that some people benefit from assistance, because they do have a disorder == experience harm from the properties of their neurological composition.

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

mnl mnl mnl mnl mnl Jan 3, 2024

@androcat @robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity what I think the general debate about this is getting at is that society tends to frame not wanting to do X (say, having small talk or talking about things more literally) as an actual harmful thing when it is mostly harmful because people say it's harmful. And that extends to the medical field as well. Say, framing autistic sense of justice as a "inflexible Moral rules" to cite a famous example.

Androcat Jan 3, 2024

I think that's probably one undercurrent in the discourse, and it definitely has merit.

But no single undercurrent of the discourse is the end-all-be-all - there's plenty of theses and antitheses in there.

The synthesis is some sort of list of "x, but y, but z, but..."

@robrecht @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Yeah, that's because I'm sorta cheating and including the meaning of criterion D. early in A. B.

Mainly because a lot of people focus so much on criteria A. and B. that they forget (or ignore) criterion D. exists.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity and even though I'm an adult and was able to "escape" the label (which I'm glad to because i grew up in France in the 80s/90s), there's plenty of people in authority in my life that decide what is normal or isn't, say police or managers at work, with non trivial impacts on my life. Anyway, not sure where I'm going with this, but I do much more align with the non pathologizing view of autism.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity give actual disordered things like executive function disorder or sensory sensitivities or obsessive compulsive disorder the disorder name instead of blanketing such a wide spectrum with it, it can only help treatment as well.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity and with that I'm ejecting from the conversation, thanks for the nice talk!

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Alright. Have a good one! Sorry for the reply I gave after you said you were ejecting, didn't see that until after I'd made it.

Thanks for the interesting conversation :)

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht yeah even among autistics it easy to misread debates in 500 character posts as arguments and not conversations, but also at times I'm tired/forget to put a "not arguing/genuinely curious" label up front...

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

No, the bullying is immaterial.

If you had an uncontrollable fear of loud noises, because the house you grew up in was near to a factory that produced a lot of loud noises and you were sensitive to loud noises, that would still be a disorder even though no one intentionally harmed you.

That uncontrollable fear, not the sensitivity to noise itself, would be the disorder, though.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

So why then are things like "repetitive motor movements/rigid adherence to routines/extreme adherence to routines" disorders more so than "this person reacts differently than I think they should".

We're not framing someone being sad after their parents died as a "grief spectrum disorder".

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

There actually /is/ a disorder that involves continuing to feel the full force of grief way past the point where the person experiencing it wants to. (Prolonged Grief Disorder)

As for the question: It's a disorder when the movements or adherence to routine get in the way of you doing what you want.

Or... If they get in the way if you doing what your parents want, if you're a minor.

Because...

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

One thing a lot of new faces in the autism community don't get when they go along with the insistence by old hands that others don't get to say whether we're 'disabled' doesn't refer to psychs so much. It refers to parents.

Because in many places parents have complete control over their kids and so psychs legally have to go along with what the -parents- think is normal and healthy for their kid to do.

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

(Note: It DOES also refer to psychs, don't get me wrong.

But it refers most of all and most often to parents who decide their child is disabled because they don't act the way the parent wants and the psych can explain a thousand times to them that their kid is a perfectly normal autist and their behaviour, so long as it doesn't hurt others or themselves, is fine, they still won't listen.)

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity I'm very fine with the disability label, but I frame that as very different than disorder. In fact my "order" (the thing that is not harmful to me) is what causes my disability, say because k ask too many questions when I don't understand something, or because work settings are usually an assault on my hearing, or because dogs barking disrupt me to meltdown. Those disable me and need accomodation.

Robbert van Eijndhoven Jan 3, 2024

The irony of that is that the whole reason mental health professionals use 'disorder' is that it doesn't have quite the negative connotations as disability' has for most people.

I'm fine with 'disorder' because to me it's better than 'disability', because 'disability' was the word when I was diagnosed and, if I understand it, you're fine with disability because it has less negative load for you, but not fine with 'disorder', because that is the word used now.

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht I'm fine with it because it better frames what helps me: making things such that my "order" is not disabled by external factors. Bipolar and ADHD however I'm fine calling disorders, because indeed I can take a pill and I'm fine, and it's (mostly) a thing I can fix by myself. Sensory stuff similarly, I can just wear earplugs. If work forbids me from using headphones or Police singles me out because of it, then I'm being disabled.

negative connotations I actually dgaf (if I ever did)

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht I have enough privilege and can pass well enough that I tend to be openly out about my various diagnoses and my substance abuse in the past, because that's a way if giving back and helping deconstruct the stigma.

Telling friends or even colleagues who appreciate me "people with x/who are x can look just like me" I think does a lot for awareness.

Androcat Jan 3, 2024

Also, there was a nazi doctor who used "diagnostic criteria" to decide which children should be exterminated.

And that heritage lives on in Autism Speaks, and other proponents of ABA and similar crap.

So, yeah, there are good reasons why many are concerned.

@mnl @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Robbert van Eijndhoven Jan 3, 2024

@androcat @mnl @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Yes, absolutely.

The great irony of the history of autism research is that the two fathers of the field are two austrians, one a jewish doctor who avoided the Holocaust and cared about the autistic kids he worked with (Kanner) and the other an out-and-proud Nazi who sent any autists with a co-morbid intellectual disability to the gas vans (Asperger).

And yet...

Robbert van Eijndhoven Jan 3, 2024

@androcat @mnl @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

For many years people lionised Asperger and poo-poo-ed Kanner because Asperger's writing on autism was less focussed on intellectual disability and more on what autists could achieve, while Kanner focussed on the challenges they faced.

No one acknowledged that this was because Asperger only kept the ones with the high IQs around and had the others gassed and Kanner wanted to help all autists equally.

Robbert van Eijndhoven Jan 3, 2024

@mnl @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

No. But if your feelings regarding getting bullied continue to cause you harm long after the actual bullying has stopped, there might be a disorder.

(Although the disorder in question would be PTSD, not autism and while autism makes you more susceptible to developing PTSD, PTSD is not itself an Autism Spectrum Disorder).

mnl mnl mnl mnl mnl Jan 3, 2024

@robrecht @androcat @ferrous @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Sure, yet focusing too much on a single activity (to pick one out), is a diagnostic criteria for ASD, when uh... "too much" is defined by the clinician, and can easily be used to frame what I consider very much "ordered" behaviour to be stamped as a pathology.

To me that makes a very big difference.

Ferrous Jan 3, 2024

@androcat @mnl @robrecht @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

My problem with this is that the term 'disorder' inherently makes it about the individual.

You seem to be wanting to apply something very like the social model of disability to 'disorders' but I don't see how the two are compatible. I feel like you're combining incompatible paradigms here!

Like if I'm in a society where being bisexual causes me harm, that doesn't mean that the label of 'personality disorder' fits!

Robbert van Eijndhoven Jan 3, 2024

@ferrous @androcat @mnl @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

This isn't Androcat wanting to apply something. This is the current accepted best practice in mental healthcare.

A disorder IS about the individual. In the sense that it isn't a disorder unless it stems FROM the individual and AFFECTS the individual.

If being bisexual causes you harm because the society you're in is homo- (or bi-)phobic, that's not a disorder.

But...

Robbert van Eijndhoven Jan 3, 2024

@ferrous @androcat @mnl @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

If internalising the values of that society causes you to hate yourself and that causes severe harm to your mental health (as it most assuredly would), then THAT is a disorder.

Not the bisexuality, not the phobic nature of society, not even sharing those views despite being bisexual, but the unhealthy self-image is the disorder and the 'treatment' is learning to love yourself as you are.

Robbert van Eijndhoven Jan 3, 2024

@ferrous @androcat @mnl @petercrosbie @sentient_water @Aerliss @Autistrain @neurodiversity

Now... Would an intensely phobic society at large think that hating yourself to the point of (mental) self-harm because you're bisexual is a disorder? Probably not, they would feel that that is a natural feeling that bisexuals deserve to have..

But that's not how psychologists and psychiatrists see it. (Not any more at least. Things used to be worse.)

Aerliss Jan 3, 2024

@robrecht @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity "but that's not how psychologists and psychiatrists see it"

You're wanting to have these neat little boxes where words mean different things in different contexts and never the twain shall meet. But research papers don't exist in a vacuum. Popular understanding of terms don't exist in a vacuum. Regulations & government support systems aren't created in a vacuum. Everything bleeds across the lines. 1/?

Aerliss Jan 3, 2024

@robrecht @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity
Science communicators need to do better. Just saying "that's not what we mean" over & over will not help. ASD is a pathologised term and it is inextricable from "autism" in the public consciousness because autism is in the name. "People with ASD have deficit A" isn't even true of ALL people with an ASD diagnosis, but papers are either written that way, or not explicit enough and get reported that way 2/?

Aerliss Jan 3, 2024

@robrecht @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity Saying "it's only a dysfunction if the autistic person feels it is a dysfunction" doesn't do a thing. Larger society can't hear it. All society hears is "autistic people have dysfunction A", or at best "autistic people with trait A are dysfunctional." 3/?

Aerliss Jan 3, 2024

@robrecht @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity Why? Because that's how it's written down. Research papers pathologise and generalise. Famously, the paper on how autistic people are honest framed it as "too honest". Not "too honest if it causes them harm" but simply "too honest".

Just telling autistics "eugh, you're getting it wrong" won't solve the problems you're seeing, in part because it's not just autistics, it's society & law makers too. 4/4

Robbert van Eijndhoven Jan 3, 2024

@Aerliss @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity

It's funny that you said 'famously' there, because it's indeed famous in some discussions surrounding good science communication... Specifically on how the media will run away with what you write,

The research paper in question never actually used the phrase 'too honest'.

Almost all the reporting on it did, though, to the point that people now think that the research paper itself said it.

You see...

Aerliss Jan 3, 2024

@robrecht @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity "or reported that way".

You're going back to "but that's not what we said". Cool. But if what is said is not what is heard it's a problem. If it happens once, that's maybe a problem on the listener's side. Happens repeatedly maybe still the listener but they aren't going to change so the speaker needs to.

Researchers need to understand that it's not just their colleagues reading their papers.

Robbert van Eijndhoven Jan 3, 2024

@Aerliss @ferrous @androcat @mnl @petercrosbie @sentient_water @Autistrain @neurodiversity

From the use of 'we', you seem to be under the mistaken impression that I'm a researcher.

Ironically, the reason why I know that journalists are often the ones responsible for twisting things out of context is that I studied to be one (though I never finished my bachelors, because of autistic burnout).