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

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

Lifelong nature lover & autistic.

@sentient_water

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

@actuallyautistic @neurodiversity

@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.

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

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

@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'.

@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.

@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.

@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! 😒

@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.

@robrecht @Aerliss @Autistrain @neurodiversity & have zero lived experience & have been basing their science on repeatedly disproven myths about autism.

@robrecht @sentient_water @Aerliss @Autistrain @neurodiversity

It is completely avoidable. Medical professionals are humans and thus have varied capabilities in terms of written communication. Many are perfectly capable of writing in clear and non-pathologizing language. Those who are not as capable can make use of support from co-authors.

Doctors are afforded enormous privilege and can choose to make use of that privilege to “do no harm” as they have pledged. When they do not, we can and should hold them accountable, by making clear the harm they cause and demanding change.

I hope your pain abates. Until you are able to communicate your ideas without intense sarcasm, you will also be causing harm. We can and should hold each other accountable.

@GTMLosAngeles @robrecht @Aerliss @Autistrain @neurodiversity I very much support co research but it needs to be equitable. I can name lots of #ActuallyAutistic psychologists, scientists & researchers who are producing incredible research but they are almost never referred to by NTs.

I was told at the start of my M.Sc. in autism that "some of the best research on autism was being done by autistic people" they then only taught us about NT researchers such as Simon Baron-Cohen who once said

"The autistic is lacking some essential part of being human.". He's the NT world expert.

@sentient_water

On SBC, I would add that in the most famous piece of research he is involved on autism, the title is a reference to monkeys... This guy is completely not worth a penny.

@GTMLosAngeles @robrecht @Aerliss @neurodiversity

@Autistrain @GTMLosAngeles @robrecht @Aerliss @neurodiversity An absolute turd of a man

The final straw was Spectrum 5K, where he was given £3,000,000 to collect & analyse the DNA of 5k autistic people (to help with our poorly tummies & such).

Then when asked in an interview if that data could be used for eugenics he basically replied he wasn't gonna do any eugenics but he couldn't guarantee someone else might not. Zero fucks given.

@Autistrain @GTMLosAngeles @robrecht @Aerliss @neurodiversity I might start compiling a list of his theories that have been proven wrong but are still taken as gospel by many.

He's done immeasurable harm to autistics.

@sentient_water @GTMLosAngeles @robrecht @Aerliss @Autistrain @neurodiversity I would love to hear more about your Masters in Autism. I'm strongly considering applying to one in September.

@niamhgarvey @GTMLosAngeles @robrecht @Aerliss @Autistrain @neurodiversity It was great to be back in education & the first year was very positive. Then as I began to understand more (I enrolled only a month after receiving my dx) I began to see the harmful myths that did not correlate with my lived experience.

I had a wonderful cohort in the first year. I was the only male on the course & the other students were nearly all mothers of autistic kids & worked in education.

I gave press interviews on behalf of the course & university. I delivered training to university staff. I even delivered a session in my second year.

It was also about this time that I was doing a module on multi agency safeguarding of vulnerable adults & when reading the required texts I made the horrible discovery that I was being both exploited, disregarded & effectively ignored if anything I said disagreed with NT cannon.

That second year broke me & I never fully recovered the optimism, hope & enthusiasm I had for the field.

If you're considering going to study autism at university I should warn you, you'll be battling myths & stereotypes all the way. Unless you find an excellent course.

The final straw came when I experienced total autistic burnout & a worsening of my physical disability. The tutor suggested I press pause & come back to it. I was sent a form to do this. Filled it out & returned it.

They had sent me the form that would unequivocally remove me from the course. A year I'd spent five grand on.

They refused to award me a Post graduate certificate that I had already passed & paid for until I paid for some horrendous module that truly broke me.

During the middle of lockdown, completely isolated & now with no support from the university, organisations or anyone else I had to fight for the qualification I had undeniably earned. It was taken to an independent advocate & nearly all of my complaints were upheld. Though by this point I was completely broken by the experience. Meanwhile everyone (who wasn't autistic) continued to have fairly lucrative careers in the Autism Industrial Complex.

I was effectively dead to them. I'm still completely & totally isolated. I can't turn to anyone here because it's rife with nepotism & revolving door & merely the mention of certain people causes me to feel sad, angry, overwhelmed & trapped.

I'm not suggesting you would have the same experience & I sincerely hope you don't but that's a small fraction of the fallout from my M.Sc. Believe it or not there's worse parts.

So even though I have no academic support network, or colleagues, or income I still devote a significant amount of my time to studying, discussing & thinking about autism.

It was during this that I was introduced to the concept of "mate crime" I was then given repeated brutal examples of what it actually meant from people I trusted implicitly.

I have hope for my future career but I don't think it can happen where I currently live. In short my opinion is you already know more about autism than any "expert" save yourself the money & start your own business. Or write a book.

@sentient_water @GTMLosAngeles @robrecht @Aerliss @Autistrain @neurodiversity wow. This was not the response I was expecting and I am deeply grateful for your honesty. There's a lot to process here and I will take my time with it.

My reason for wanting to do the Masters is to get involved in neuroaffirnative research. The book I am writing at present has truly highlighted the shortage of this research.

@niamhgarvey @GTMLosAngeles @robrecht @Aerliss @Autistrain @neurodiversity Yeah sorry it wasn't as positive as I would have liked. I did make some great friends too & I felt amazing for a long time.

Can I ask what university you're considering studying at? I admire anyone who can make a go of it & we definitely need more autistic people in these places.

@sentient_water @GTMLosAngeles @robrecht @Aerliss @Autistrain @neurodiversity I did a 2 year taught Diploma in University College Cork. The Masters is a follow up to this but is in a different university, Mary Immaculate in Limerick (unfortunate name I know) Ireland. It is run in conjunction with The Middletown Centre for Autism which I find brilliant so I feel positive about the course.

@niamhgarvey
The Middletown Center for Autism makes great things! You're lucky if you can do this master.

It's not the same at a university not far from where I live. They give a diploma to everyone and the work is just bad. I couldn't finish the read of one student work. It was too much to read entirely.

@sentient_water @GTMLosAngeles @robrecht @Aerliss @neurodiversity

@Autistrain @sentient_water @GTMLosAngeles @robrecht @Aerliss @neurodiversity I had opposite, I learnt so much from the others in the Diploma. Was during the Diploma that I realised I was autistic myself.
@robrecht @Aerliss @Autistrain @neurodiversity You describe yourself in your bio as an advocate. Who are you advocating for exactly?

@sentient_water @Aerliss @Autistrain

Autists.

And part of that is combatting misinformation. And the biggest subdivision of that part in recent times has been providing push back against people who are too negative about doctors and psych professionals.

Because they're far from perfect and no one should put blind trust in them, but there is such a thing as taking it too far.

@robrecht @Aerliss @Autistrain Good.

Well perhaps listen to autistics when they tell you stigmatizing language & bad science is causing them suffering.

I am very much a supporter of good science but I will not blindly support someone because they're a doctor.

You can do good science & still be respectful.

@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

@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...

@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...

@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?

@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...

@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.

@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.

@mnl

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...

@mnl

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.

@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.

@mnl

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.

@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.

@mnl

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.

@mnl

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

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

@mnl

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

No harm, no disorder.
Harm, disorder.

Some autists experience harm.
Others do not.

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

@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?

@mnl

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

@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).

@mnl

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

@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:

@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....

@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...

@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.

@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

@mnl

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

@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.

@mnl

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

@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.

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

@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 :)