Rule 13: the last nail in NAS's coffin?

Had to Google it...

Crawfish.

Iain said:

You are right about Conspiracy.
Elvis used to post on here before He " Disappeared ".

I hear he works down the chip shop now...

Cod in a trap

I can only apologise for this rule being introduced. I think it was my health thread thread which is one of the reasons why they did this though I was grateful for the help given by the lovely members and that put my mind at ease so thanks for that. I am sorry though if I'm one of the reasons for this rule being introduced.

I'm guessing the mods aren't autistic as calling and seeing a GP is one of the most stressful things for a lot of us and to me it makes sense checking with people who understand here first. I saw my GP today and had a meltdown it was horrible and very scary experience. 

I'm glad of this site as we're all more less in the same boat and it's reassuring that we can look out for each other.

Yes, I agree.  I think you have just described the status quo in this place ie..collectively, we all seem to generally keep on the "right side" of the fandangled "liability" line by some sort of inherent and collective "reasonableness" threshold.

I think we need to remember this is an open forum. Anyone in the world with Internet can access these pages. Self governance would not include or protect those who were not registered members.

They have a duty of care towards the users, some people may see the rule as a bit harsh but I'm sure there are vulnerable visitors to these pages at times. The other part of me says "let's use common sense" but this means different things to different people.

I mean there are methods of group governance that don't require consensus. Democracy is one. They are not with out there problems but it's not imposable per se.

I can't make up my mind whether you are trying to insult me or not, so I will assume not. If you can tell me where the "easy money" is, my accountant would like to hear from you. Many of my clients are self-funding and I try to charge a reasonable fee commensurate with the work involved. I make a living, and by some standards, I am "comfortably off" in that I don't have to worry about where my next meal is coming from. It is probably easier work than fruit picking or stacking shelves, I agree. But my plumber's hourly rate is possibly better than mine when one takes into account the unpaid research, the re-drafting of reports, and the time spent quoting for work that does not materialise.

Certainly, my profession has an expectation of "evidence-based practice " - there should be no difference between "expert opinion" and evidence. Regarding your comment  "they have their qualifications, the learning is over and now it's time to cash in." I don't know if you are of this, but most professions require evidence of "continuing professional development" to retain a practising qualification.

Regarding posting "in the wrong place"  I think it is about journalism vs journals. A journalist is looking for a headline. "Boffins find a cure for Von Garleheimer's Disease" is a far more eye-grabbing headline than " New Research into alphawhatsidase agonist shows promise in increasing longevity for some Von Garleheimer's Disease patients sometime in the next ten years."  The press and social media often over-simplify and over-generalise. Many years ago I took a two-day course on appraising medical papers, etc. and got completely confused by the statistician talking about sample size, confidence intervals etc. and not to rely on just the p values. I can just about manage Huff's "How to Lie with Statistics". Written in 1954 it is still in print, and well worth a read.

Edward Jenner was an apothecary (a medical practitioner) and later trained as a surgeon at St George's under John Hunter, before setting up in practice in 1772. [Wikepedia]

Edison was an autodidact, and was self-schooled after a teacher referred to him as "addled" and "unteachable."  There is a strong probability that he was neurodivergent, probably ADHD. He started work at 13 as a newspaper seller. His only recorded further education was a chemistry course at the Cooper Union. You also need to consider the role played by Westinghouse in the debate.

Anarchy would be inevitable if "we, the people of NAS" were required to reach a consensus on what our own rules should be.  Our church is too broad = blessing and a curse in equal measure.

Ok well self governance in the spcific sence or writing our own rules.

I think that, by definition, self-governance would NOT require the MODS.......moreover, I believe that members self restraint and care that I see in 95% if all posts suggest that self governance is already alive and kicking on this place.  Long may it remain so - please!

It's a little hard to follow your prose. But what I picked up is you think some sort of self governance is an option? The mods don't seem open to that so far.

Incidentally if you want my opinion on pharmacology there probably are a lot of dopamine reuptake inhibitors that could be viable antidepressants but are now banned because they debuted as designer drugs long before the medical establishment got around to properly assessing their safety and efficacy. And of course once a drug has been made a controlled substance no pharmaceutical company is really interested in paying for clinical studies.

as far as I’m aware there is only one dopamine reuptake inhibitor that is license for use in the UK and its use as an anti-depressant is off label. This is partly because dopamine reuptake inhibitor are a lot more work for doctors. It’s a lot easier to get addicted to them. But of course doctors already prescribe highly addictive substances like morphine all the time, it’s just that they have to do a lot more work monitoring and supervising their patients when they do so. Pretty much all dopamine reuptake inhibitors are potentially addictive; the archetypal dopamine Reuptake inhibitor is cocain. But for people for whom other antidepressants have been ineffective some of these dopamine reuptake inhibitors  might offer real relief and therapeutic benefits. If administered under strict and highly controlled medical supervision.

You know the motto of the Royal Society translates into English as take nobody’s word for it. Science is supposed to be about evidence and testing and experiments are supposed to be replicated and verified. But the reality is a lot of scientists trade on their  reputation these  days and most of the time replicating other peoples work is seen as a waste of resources.

on the other hand it’s frustrating to have arguments with people who think that they understand the ‘evidence’ but their evidence is based on a lack of understanding.  The whole joke about the guy who thinks he’s disproved The speed of light as a intrinsic physical limit by talking about a  bullet going half the speed of light  fired from a bullet that going half the speed of light.

individuals have to have enough background knowledge to actually be able to understand the evidence before they can be led by the evidence. most people lack the patience to dig into matters to that extent. but that doesn’t stop them arguing and it’s these individuals who become the tinfoil hat wearing conspiracy theorists.

In fairness that sort of data mining would apply equally to this forum which is open to everyone to see. I have the same no identifying information rule on my forum this one has. But you can’t keep everything about your life secret and say much at all. Particularly if you’re trying to share personal experience.

The possibility that someone can reconstruct identifying information from lots of small individually not identifying details is as just as much a risk here as anywhere else.

See my film night experiment...

In fairness to me, I will sign up for your BB simply because I like that format, and having prior admin experience of running one of those for a while I might have something to offer if you develop a need, but it won't be quite as quick as you want..

On my first attempt, I needed to select a user name, and supply other data, and that gave me pause to consider whether I should keep to this I.D. and remain instantly recogniseable or whether I should start again with a different I.D. partly to give people (whether they think they like me or not) a second crack at evaluating me, and also because I like to make it hard for "bad actors" to follow me about the internet, as should you all. (IMHO) 

It is possible to operate an internet "speak easy" quite successfully, particularly,  if you use the PHBB "groups" feature so that distressing opinions and content (or even conduct) can be hidden from casual inspection by idiots or busybodies, but be warned, the admin of such places can be quite time consuming and challenging, and it pays nothing..

So the professionals will bail, rather than face a bit of competition? 

The good ones of course, who actually know right from wrong and are genuinely in it to help, rather than for the easy money (and it is easy money compared to what most non-professionals have to go though, I've spent time on both sides of the economic/social divide, so I know.) will stick around of course...

In a society where only "professionals" are allowed to speak or do we would miss out on a lot of invention. 

No traditional vaccines for a start! As Mr Jenner was not a "professional".

In the battle of the currents Edison was the "professional" and Nikola Tesla the "quack" but back in those (more self reliant) days, everyday people made up their own minds, rather than routinely outsourcing their thinking to "professionals".

There's nothing more frustrating in life than to have the solution to a problem but be ignored, and being a member of a professional class should indicate that the certificate holder is more likely to provide viable solutions, but out in the real world, based on our own experiences, it is clear that many of us a lot of us have our doubts.

The discussion in my "Interesting article?" strikes to the heart of the matter for me.

As someone who does think for himself, and perhaps much more importantly isn't afraid to try testing my opinions, I've formed a solid but unprofessional opinion that evidence trumps "expert opinion" almost every time. There's a poster in that thread who seems to be claiming that the value of information is invalidated by simply being presented in the "wrong" place from his perspective. 

When I did carry out a professional role, I noted that most of my fellow professionals hated on the clients, who would have already worked the problem for themselves, seeing them as "troublesome" .  I found this (very prevalent) attitude divisive and created a "them and us" attitude towards the clients (who of course were paying for our services) I on the the other hand found it engaging that the clients were trying to do some of my work for me, and enjoyed either watching or helping them resolve their issue and get on with their lives, rather than being worried about any "threat". 

All I know is that when I was genuinely in the grip of the suicide monster, and actually moving towards taking effective action, it wasn't some professional that saved my ass, it was an accidental combination of street drugs, taken in an effort to gain a "short break" that worked way better than I could ever have expected!

Because I'm not a "professional" my (lifesaving, to me) "discovery" will only ever be investigated by other people like myself,  who have been either failed by proffessionals, or simply are excluded from access by circumstance, and only if I am allowed to publish my experience! 

Rule 13 in reality, like many such rules will protect some people from their own stupidity or the stupidity of others, (eloquence is often mistaken for correctness) and unfortunately herd others into the hands of unscrupulous professionals who are really only in it for the money, they have their qualifications, the learning is over and now it's time to cash in.

Professional classes are great in a culture of excellence but an absolute liability in a culture of compliance would be my observatibn.

The goal is to only let you post anything that does not upset "the narrative". As is being rolled out across the internet.

The whole point about Autism is that we are NEURODIVERSE, which means that on some occasions our thinking will conflict with the narrative that everyone else believes.

I've been genuinely surprised how few "conspiracy theorists" there actually are in our cohort...

Wait until they roll out "Social Credit" scoring, some people here are in for a big surprise!

Given the portfolio of providers they manage, I wonder how they balance their interests as service providers with representing service users. We have the potential for a conflict of interest.

you know, in my life I have had many passions, for different subjects, some I have studied for many years, others less. I've always read up on so many things. I know several languages ​​and dialects, I don' t count them but there are so many, not so much English as you will notice :) I understood that in me something was different than in others, but not what!

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I have memories of when I was very young, some very early.

At the age of 4, something changed in me.

I began to understand that I have deficits, but not why.

So I started to change those deficits wherever I could and I partially succeeded.
I have a lot of defects including ADHD , alexithymia and others and still others including dysgraphia.

I arrive in 2001 to listen to Giorgio Nardone and the genius Paul Watzlawick.

I think I have social phobia.
But specialists don't find I have it.
I hypothesize an avoidant personality disorder, in psychology you change your cluster and it's not easy to treat.
But I don't have it.

Basically, despite having an IQ beyond the GIfetd level, I can't do normal things.

My father asks me what I have.
I tell him that I haven't figured it out yet.

I spend years studying about myself what my deficits consist of.

Just by chance in a forum I am compared to an Asperger who writes like me and thinks similar to me.

He writes to me in public that according to him I have something else.

I reply that I have no medical findings.

So you can't claim to be like him.

It was now 2010.
In 2012 a psychiatry specialist (which was one of my favorite subjects) relates to me: Asperger from DSM 4th.

I continue for years to help others with my condition, assuming I have no diagnoses from people truly qualified in autism.

But in the forums I receive thousands of attestations of similarity to their diagnosis.

Still another 9 years pass during which I become part of scientific research by experts with thousands of validated publications.

I have a diagnosis after 9 months time.
I take the diagnosis to the general practitioner who at first does not seem to understand me but issues a certification for me to be evaluated by other different medical commissions.

I have after another 2 years the call for the first visit, then the other one.

I'm at the end of my strength and I go to my general practitioner to ask to stop things there.

I ask to be excluded from the assessments (We give a percentage of disability and therefore money based on the severity)
In doing so I basically give up the money, the recognized diagnosis and future visits.

The doctor then calls the director of the evaluation commissions.

Feeling that I refused an evaluation that also involved money for adaptive therapies, he praised me.

And he urges me to go to them.

He is amazed by my frankness and fairness.

With immense effort I await views 1 and then the second where he asks me what he has.

I ask to read the doctors' reports and I explain very quickly what it consists of.

In summary I get a percentage of 75% (The average is 42%).

My doctor is not smiling for the first time and I see him getting angry.

They gave you the minimum possible, you were 100% entitled.

Having studied law , I know my rights , but I will not sue for the next 6 months .

Because I'm exhausted and I don't feel like doing any more visits, and the years have been too many.

They give me a minimum check and I write in the request to make use of the right of law 68 which gives job opportunities.

Now in three years they have not assisted me at all, and I have no cure for my major depression, and to improve my social skills.
I have nothing, just a check for over 300 euros.

I asked to give up the money to have a job at my level.

They do nothing.

The difficulties for us autistics, if they are not comorbid with anything else, are purely of communication.

I find support from my general practitioner because in the meantime he was informed about what it consisted of. I find support from three specialized psychiatrists.

Which tell me not to take any medication in my case.

Now and in fact I'm without any real support.

What do I do?

I wanted to ask it here.

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Here I have noticed that people are of a high quality profile, they are over average in their IQ.

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I often read wonderful posts.

They are written by very smart people.

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I understand what you wrote and I sympathize with you.

As an alexithmic, I can still understand some things and what you write is not at all far from the factual truth of the situations of autistic over 18s.
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As for writing, I understand that too. §§ And I understand that in an autistic forum, being careful about how to formalize a post is a real problem.

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This aspect should be evaluated
§I understand that NAS has objective reasons to protect itself.

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We must try to understand together with the moderators how to overcome this obstacle.

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But I advise you not to start thinking negatively.
§On the rest I'm used to it because you can't recommend almost anything with us.

You're out of the forum right away if you do.

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I know: Italy is thought of as if it were the place where the rules are lacking or not respected.

In some places they are peremptory.

It is not allowed to transgress them at all

not even people are listened to in the forums because even in mine, which I started years ago, there are clear ways of not listening.


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On the rule of writing medical advice, perhaps what and how to do for us should be clarified, because otherwise, and with all the goodwill of the way, we would be wrong.
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In the Italian forums I posted the sentences written in one of my national languages ​​(there is one official one but for example there are several others, as well as 17 dialects.

My parents spoke both French and German as a second language!


In addition to other languages ​​and dialects.

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I wrote technically perfect posts in an aseptic way and asked questions instead of defining a sensation, I put question marks at the end of each sentence.

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IN 5 years they have banned many of my virtual friends.

While I have never received the ban, I am still an active user.

But I haven't written to him for years.

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Label ... for a diagnosis from us they write but what are you doing now with a label?

I once replied...

I wrote that even on delicate garments, the label to wash it appears unless you want to ruin it.

If you don't understand fundamental things, you won't be able to help anyone.

A label can help.

Of course: we are not the label!

But it is essential for us to make progress if used well.

And attention: To progress as autistic by not aping neurotypical people, because we are autistic, and we don't have autism as they write.

It would be like writing we are (verb to be) and we don't have (verb to have).

It really makes a difference.

Because we are not wrong, we are neurologically different.

This message never gets across the media.

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As for spam or flags, in my case I may have made a mistake in communicating... I apologize for that.

For the rest I don't know what will happen: I only know that waiting is stressful.

Waiting for a decision, on posts that I no longer see.

I would pay attention to the spam and flag reporting system, it should be re-evaluated by the site.

However, I will never contest a decision, but I will take note of it, at most you won't see me here.

After removing the ifs and buts, I thank you for being able to interact or read with you.