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

Today completes an important step for the National Autistic Society. Today with Rule 13 they complete the abdication of responsibility for supporting autistic adults reaching out for help.

You may remember in 2021 that the National Autistic Society closed its general helpline. There was a thread about it on this forum. As was pointed out at the time from that point onwards this forum became the only port of call at the National Autistic Society for help for people who did not qualify for one of the remaining helplines.

And the remaining helplines pertain to children in school, children leaving school and parents of autistic children. The National Autistic Society has become a defacto children’s charity leaving autistic adults out in the cold.

Now not content with refusing to help autistic adults they now seek to reduce autistic adults ability to help each other. I fully admit that a bunch of amateurs on an autistic support forum is a poor substitute for professional help. However the vast majority of those seeking such help now have nowhere to go professional or otherwise.

Some of you know that I also brought a lawsuit against an organisation for discrimination. I reached out to the citizens advice bureau and got no useful help. I reached out to the EASS and they said that they couldn’t help me because the other party would not engage with them. I wrote to established academics with a background in discrimination law and autism and they said they couldn’t help me.

Yes I rang that autism helpline back when it existed, back when I tried to get some justice and they said we can’t help you. But at least I spoke to someone who admitted that he was supposed to be able to help me. That helping me was what he was there for.

With regard to the law when you bring a case for discrimination most of the time legal aid is not available. This is in part because the majority of discrimination cases go through the small claims track which is intended to operate without lawyers.

Something similar applies to the health service. It’s very easy for autistic people to get sidelined in the health service particularly if they are bad at articulating their needs and concerns. Again I know this from personal experience.

At this point if autistic adults come to this forum or the loved ones of autistic adults come to this forum and say they are having difficulty with the law or discrimination or a medical issue rule 13 interpreted strictly means that we can provide no helpful advice other than pointing to sources of help that in fact do not exist.

For quite some time now I have run a website dedicated to helping autistic people defend their rights and oppose discrimination. I chose not to include a forum on that website because I was aware that policing it could involve a substantial amount of work. However this development has persuaded me to change my mind. So I’m announcing that areyoualien.uk now has a forum for autistic people. The focus of this forum like the website is advocating for autistic rights in government policy and the law and opposing discrimination. You are all very much welcome there.

Parents
  • Why isn't rule 13 an NAS disclaimer stating: "Any medical advices expressed or implied within this forum shall not be supported by the NAS."

    Perhaps with our collective unity against this current rule, they can be persuaded to take this above suggestion as forward thinking rather than placing yet more restrictive rules upon us as adult autistics.

  • SOMETHING has obviously happened with a Member that NAS has got the flack for.
    Due to Data protection we will never know.
    We can't shoot the messenger's.
    Clarification would certainly Help the rest of us though.

  • A simple disclaimer is all that is needed.

  • 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'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.

  • 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.

  • 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.

  • Really ?
    Was that before or after Burger KING ?

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

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

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

  • It will possibly have the effect that those of us with professional qualifications and relevant experience will move away, leaving the site to quacks and conspiracy theorists.

  • Woke ? 
    It is what it is.
    Nothing Woke about it.

  • It must be obvious from the outset for any member to understand that all unprofessional advice given on this forum --- is exactly that, and not condoned by the NAS --- simples :-)

  • But surely if Members are giviving Memberss advice then NAS is not culpible anyway.
    Tell you what, if you have a Headache i PROMISE  i will not mention Asprin.
    It's in the Bible my Friends... Rule 13... " Thought shall not help "

Reply
  • But surely if Members are giviving Memberss advice then NAS is not culpible anyway.
    Tell you what, if you have a Headache i PROMISE  i will not mention Asprin.
    It's in the Bible my Friends... Rule 13... " Thought shall not help "

Children
  • 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'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.

  • 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.

  • 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.

  • Really ?
    Was that before or after Burger KING ?

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

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

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

  • It will possibly have the effect that those of us with professional qualifications and relevant experience will move away, leaving the site to quacks and conspiracy theorists.

  • It must be obvious from the outset for any member to understand that all unprofessional advice given on this forum --- is exactly that, and not condoned by the NAS --- simples :-)