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.

  • Peter, this is a general observation and not aimed at you personally.  I do not know you, I do not what security you have on your server, and I have no way of finding out. Even if you are legit (which I have no reason to doubt)  it does not mean that one of yours users might not be "dodgy".   > The same aplies here.<   Even if one uses a "disposable" email address and logs in using a secure bowser and / or a VPN, there is data for mining.

    I did some training on preventing internet child abuse, and the police officer showed us how he had been able to "profile" his teenage neice, with her and her parents permission. All I will say is that it involved cross-referencing social media, a name here, a location there ... She replied to a message from the nice teenage boy who contacted her online, and it was her uncle. Scary!

  • I think the point is that anyone can post anything here.  We have no way of telling whether a poster is an "expert" or some sort of conspiracy theorist with an agenda. I usually look at the poster's profile, but often they are blank or at best uninformative, and in any case, they can be fiction. If I claimed to have a PhD in Ontological Serendipity (which I don't) there is no way you could tell if I were lying.

    The net is a jungle, and one needs to fact-check everything.  That is why I try to post references to peer-reviewed literature, at least a name and date which can be checked on Google Scholar, even if you don't have access to PUBMED or other "academic" sites. Believe nothing without checking.

    Whether or not a poster adds a disclaimer after posting a consignment of bovine excrement is irrelevant if someone out there believes it.

  • Saved me a lot of typing there, Number. hear, hear, etc.

  • Such an interesting point you make there, when you consider that the cure is worse than the disease, when one has to mask in order to have a genuine-interaction..

  • Personally I'm not easily offended, unless it's something profoundly negative and/or aggressive . I was recommended by my GP to visit this site, and for that I thank him too. I understand from previous threads that a GP can't make a formal diagnosis but the one I spoke to seemed very understanding and knowledgeable about the subject, at least from my 'novice' point of view. The openness of everyone on here is what makes it so helpful and I'd hate for any kind of 'censorship' to deny people that opportunity to share freely. When we have to walk on eggshells it almost becomes a form of masking in itself. Hopefully common sense prevails. There is an obvious level of intelligence amongst those posting here regularly that tells me nobody would get away with bad advice or disrespectful comments for very long before being held to account anyway. As I've discovered, often to my detriment, the very nature of autism can mean a lack of verbal filtering, but if I'd known before what I know now then I'd probably still be in a relationship instead of finding myself alone again at 58 years old. As I've said before, putting a label on it doesn't change the fact that I have a disorder but it does mean that I can now ask the right question to the right people and get honest answers from those that can relate to what I'm experiencing. To lose that now would be a real wrench.

  • Pleasure. I'm also a newcomer to the site. § It's called an autistic condition, at least this term is used by us. Then I wouldn't be able to write to you from here. § I'll tell you no! I'll explain. medical advice .And not even in a nihilistic advice, if for example a literature devoid of ethics were recommended (example: how to die, none of us would do it I set an impossible extreme example, given that we are good and correct people). §Let's put ourselves in the perspective of a forum. Which accepts us with a diagnosis of autism, but also with other types of problems (a very long speech that I don't do) and with questions aimed at understanding oneself. § A medical advice is when a user writes not Ethically to use a drug, make a diagnosis without the title of a specific degree, when you try to interrupt a therapy, when you use, for your personal reasons or malice, interactional methods of doing nothing prescribed by a doctor or do not write a very simple sentence of the according to my opinion and of the own experiences. That it is not helpful without overstepping unstable boundaries in very fragile people. You praise therapies not shared by the scientific world. it was published in SCIENCE for example. There is a not fine line between informing and medically advising. § I write that here in Italy it is perfectly normal and right (sorry if I have already written it); call peremptorily and if repeated the call this leads immediately to the Ban (exclusion forever from the forum)§ To say that NAS, perhaps with a rule number 13 protects itself from legal actions not wanted by NAS, is the least I can do.§ Question ... but have you ever wondered why NAS Forum in this case should immediately regulate something with a rule 13? I studied 5 years of logic at school. I could describe hundreds of pages of this subject to you, I won't I will use only one answer: it is not that if they did it it means that they were not protected? In perfect good faith they accepted the comments of users who in the best case could also be wrong. I also wrote that I could have unintentionally made a mistake in answering here in the thread. §This is possible! §I'll give you an example, in one of our regions we have a Governor called Luca Zaia. He is super good. He does a hundred things for example, but he can also make some mistakes. He is well liked by people because he admits he is wrong when he is wrong. He is rarely wrong too. Isn't it normal to have a regulation? Why is it so annoying to have a regulation that fills a potential lack in the regulation itself? Isn't it good? Let us ask ourselves really why there are all these hesitations to a rule if anything. § A rule provides for impositions. But impositions allow the site to exist. If they are violated? The site that suffers? I am writing to you myself that maybe in six days I'll be here longer because I unintentionally wrote something wrong here in the thread. I'm not sure I'm biased. If you don't see me it will be because of this thing. If it happens it will only be my fault, not the site and whoever manages it, but only mine. I accept this. And I wish you all the best for a good continuation. I will never write that the site was wrong. If anything, I hope that the site will remain without me. I am here now, I may not be there soon. My intention is to write it in a super serene way. Don't complain. In my opinion, anyone who complains about these things is doing it wrong.

    I will have for this another flag (?)

    Which I won't oppose because it becomes stressful for me to find excuses and it always repeats itself.

    My apologies to everyone if I have offended your sensibilities, it is not my intent, I am very sensitive too, and I would greatly appreciate it if that were the case.

    Thank you

  • As a newcomer to the site I have learned so much that has helped me to rationalise my 'condition', if I can call it that, through what I've always assumed to be perfectly acceptable open discussion. I have also had certain literature recommended to me, which has also been a great help. Does this constitute medical advice? You could argue it either way.

    Thank you to everyone who has given advice freely thus far...just in case that river gets dammed sometime soon. As several people have already said, this is almost certainly driven by fear of litigation, and therefore somewhat understandable if regrettable.

  • Don't worry it happens to most of us at times. Akismet (the spam fighting bot) can be very sensitive.

    Having a post flagged automatically doesn't mean you have written anything wrong. Just submit the appeal and the post should be restored in a day or two.

  • Happened to me too.
    It does it automatically.
    Perhaps this should be evaluated better.
    
    Instead, the discussion is turning around a rule that is present in all the forums of the world.
    
    And it's right according to my experience.
    Like it or not, it's right.
    
    §
    The NAS is useful for us autistics, it just can't accommodate our mistakes or abuse in posts.
    
    This I would find incorrect in their regard.
    §
    
    Since they have a lot of posts to go through, let's not rush them because they are human beings, and have the time necessities to go through posts.
    
    §
    Having said that, I may have to leave it if I have written two posts considered wrong, in spite of myself.
    
    My intentions are always oriented towards maximum respect and honesty.
    
    I can be wrong: I don't speak English and format badly.
    
    
    Or I may be incomprehensible.
    
    But here I put it into account and I'm really sorry to give him extra work.
    
    §
    
    The forum is useful let's not oppose it!
    
    
    You write very well.
    
    
    Unfortunately here I can not write posts at my level and are not of quality
    
    
    If it loses you it will be a serious problem for the NAS.
    
    Stay here.
    
    Thank you
  • In fairness that’s true of any new thing. Once upon a time NAS was a bunch of unknown people. Any new thing needs it’s first few members to just take the plunge and join in without there being a track record go on.

    in terms of personal information all i could  collect Beyond any other forum user would be  email addresses, and passwords. And you could make a new email address and password if you want to just for the site.

    l actually strictly speaking I don’t have access to the plaintext passwords either only the hashes. Although come to think of it I can see peoples IP addresses as The forum admin

  • With the greatest respect, because you are anonymous on here, nobody knows who you are. I imagine they are being cautious like me.

  • I think maybe together we can find a useful way to stick to the rules and write with prudence on some topics.
    
    You have the decidedly greater experience of seniority compared to me who have been here for a very short time.
    
    It's not okay to ask to delay a post by 24 hours, ok.
    
    But a useful way to write better being in the forum is can propose.
    
    Maybe by opening a special thread only on suggestions on what seems wrong or not very functional to you.
    
    
    My feeling is that by copying some regulations of important Italian forums, additional rules can be avoided.
    
    I write to copy some rules to avoid having to rewrite regulations from scratch or change them into additional rules.
    §
    
    I think we can vote for the best ones if we want to make a new regulation that appeals to the majority of us.
    
    Maybe one thing can give a sense of annoyance: these are the impositions.
    
    
    But what if we shared a guideline on how to orient ourselves to write freely while maintaining impeccable ethics?
    
    I find myself writing about topics that we would not be discussing.
    
    As you would immediately receive a recall.
    Or a ban .
    
    What I may have understood from my poor English is that we should be careful not to infer specific medical and legal spheres.
    
    I am also displaced because here it has not been discussed as an argument.
    
    One tends to write in a very aseptic way.
    
    Here in a way that I find more empathetic than us.
    
    By signing up here I noticed that you are much more empathetic and emotional than us.
    
    I find it important.
    
    In general, I read you and perceive that you direct a lot of heart and feelings with respect to us.
    
    Our forums are colder, I don't know how to explain it.
  • They will Peter.
    I will.

  • Personally I think giving up on advocacy (or at least advocacy for adults) because other areas have taken off is a cop out. But if that's what they want they should consider passing on the role of being the secretariat for the The All Party Parliamentary Group on Autism on to a different autism charity more focused on advocacy.

  • As for me I really don't know why I bother. I go to all the work of adding a forum. No one uses it. People clearly are upset about this, but no one is upset enough to spend 30 seconds registering on the forum I made. ... it's not as if I was presenting an either or choice ... sigh.

  • Respectfully that's as clear as mud. Define the difference between peer support and advice please.

    And the suggestion that people concerned should contact a mod is totally unrealistic given the average turn around time on that is about 24 hours sometimes more.

  • I've long been an advocate of hospital based walk in diagnostic wards / clinics. However I don't think they need to be GP only. I think it's quite useful to rotate doctors from specialist departments into a diagnostic ward from time to time. So there is no need to do 3 referrals one after the other to decide if something is neurological or endocrinological etc. But of course funding new wards costs money.

  • It might just be a good idea for mods to add a disclaimer to their existing script, rather than censor the only real nexus to the world of autism that exists, rather than limiting us to small-talk..

  • Well I believe that the bulk of autism support and furtherment, had been coming from the parents of autists in the 90s onwards, but as that generation wanes we find that autistic society is losing a staunch fragment of itself that is not being replaced..

  • Well " Bang " Goe's that question.