I thank my God you're OK and posting, Longman, I was *faecal matter* scared we were going to lose you. I think we need to band together and present a united front, because you're right - we only have each other to rely on. The last thing we should do is withdraw, although we must also recognise that sometimes we need to, temporarily.
I don't know about anyone else, but the last thing that I need is a new mummy and daddy. I get resentful when I am spoken to like a naughty child (I had one from the mods too) or patronised, and if anyone wants to say something critical of me, they have my private contact details, they do NOT have to make a public exhibition of us, it's the online equivalent of the Stocks.
I also get a bit taxed by the sort of people who come on here and report us for the things we say. I thought we were all supposed to be adults, and as everyone points out, we might not like what people say but we don't deny their right to say it. Mods like to give their 'dressing downs' in public at us, and I do not conceded that they have any right to missuse their 'power' that way, and yet are slow, almost reluctant, to do the vital job of protecting the vulnerable.
I like what Electra and Longman say above, and if 'socks says anything at all, it's what we all think - someone there at NAS is not 'getting' it, and that's staggeringly unbelievable!
Is this just indicative of how much the NAS avoids imvolving us in the daily business?
If on there fora we are going to discuss autism and being autistic then there is no way not to rattle cages, be pushy or critical. Life is difficult for autistic people we ar3 discriminated against, suffer from a lack of employment opportunties, a lack of appropriate support and face countless barriers relating to education, health and housing.
Valid points made are not addressed. For instance posters are often advised by the Mods to look at parts of the website or to call the helpline. The helpline is not answered and leaving a message gets no response even if you are in crisis. Parts of the website are out of date and links are broken and so don't offer a useful resource.
It comes down to what the NAS want these fora to be - a cosy sanitised place where we discuss how we like to make cupcakes or a place where we can air our views, seek honest advice and get support from our peers. Does the NAS care more about presenting a certain public image than it does about us? And if it does then maybe drop the "National' from the name, because it won't represent the interests of me or any autistic person that i know.
This is me trying not to post any more but I cannot not reply to recombinantsocks.
Recombinantsocks your assessment of things is exactly right and we all need to take a balanced view. If I could quote from the article in "Your Autism Magazine", opening paragraph:
"What is the online Community? The Community is a safe, online space where people can talk about autism, share their experiences, questions and thoughts. it works because the discussion is between the members themselves. When you make a post you can be pretty sure there will be several people who will have experienced something like you. So it's support from others with direct experience which people find hugely valuable."
I read that as a good crystallization of what you are defending. what has saddened me is the increasingly overbearing interruptions from the Mods, who are nowhere in evidence in the quoted paragraph.
They appear later in the article: "We have clear rules around what is and what is not acceptable. Members can report anything they think breaches the rules. We have a wonderful team of volunteers (some of whom are on the spectrum) that read posts and act on any reports from members".
Are they really acting on reports from members? Or trying to make the forum into something that belies the first paragraph?
I'm trying very hard not to take any moral high ground. I'm just trying to step back a bit and consider whether maybe I have been over pushy, over critical, rude or irrelevant (and yes I have been all of those things at times - but I mean whether I've really overdone it). So I'm still reading posts, just trying (despite these two contradictory messages), to stay out the way for a bit.
If Bob "Mindfulness" Chase is right, then with my absence, things will balance out again, and the forum may become lively and interesting once again. I might then feel able to come back, and try to conform with the new forum, and not rattle cages.
But Bob has, I feel, made a very unwise move by introducing us to the complaints form. I'm seriously considering using it myself.
We didn't arrive on this forum through our tact and diplomacy. We have limited ability to see each others' points of view, we tend to be somewhat rigid in our thinking.
The forum is useful and it would be a shame to throw the baby out with the bathwater. Everyone could perhaps examine the moral high ground they are standing on and try (hard) to think if the other side has a point of view. The mods and myself and everyone have to do this from time to time. We all manage to say the wrong thing from time to time, we constantly turn molehills into mountains and the result is that the forum tends to be combative and bad tempered at times.
Longman, there is perhaps a grain oif truth in what the moderators have said. You have been overwhelmed, it appears to me, by the hopeless state of affairs in providing for autistic people. It seems hopeles and pointless but that tells me that we should fight on, examine what we are doing, change and adapt our tactics to make progress rather than complain about the futility of it. If everything seems pointless and futile then it tells me that you have lost your optimism and perhaps need to rethink.
Mods: I think that some of the criticism has a grain of truth behind it. Some of the input from the mods is not tailored to the situation and there have been occasions where I have wondered if the standard email template for situation X has actually helped. Also responding with authority and stamping down on transgressions won't work with a bunch of autistic people who are disrespectful of such an approach. It can just make things worse.
CC: this doesn't have to be a battle of us against anyone. How do you think the mods felt when you used the language you used? They are trying to do a difficult job and didn't get where they are by their diplomacy.
Electra, I agree that Longman shouldn't go. There is no need for anyone to leave and nobody wants anyone to leave. That is actually the easy option. It is perhaps harder to actually stay and make it work but that is perhaps the better response.
None of this is ad hominem, I may be critical of what people say but I don't think anyone has been bad. Longman has a wealth of knowledge and experience, we all have experience to contribute and help each other with. Can we get back to the business of helping each other?
Please?
Longman you will be a huge loss to this forum. You care about the people who post here and your erudition and insight are rare things. I have never found any of your posts in the slightest bit offensive or rude. On the contrary you have been restrained and logical.
I would agree that the NAS wants a forum where we all look like happy inmates, don't push any boundaries or rattle any cages.
At a recent meeting of my autistic peer discussion group I did suggest to people there that they used this forum. The suggestion was met by gales of laughter and almost the whole group saying that they have joined the forum at some point or other and left as they could not toe the line imposed by moderators.
I feel that my time here is also drawing to a close. What should be a safe and welcoming place for the views of autistic people is anything but. Dare to act like anything but a grateful disabled person and its made plain that they find you offensive.
I need to break my intended silence owing to the above exchange. I had resolved to stay silent for the time being and just read posts. Not that bad an idea - I feel I do tend to dominate things a bit, and maybe give other people a chance... nice to sit back and watch the dynamics of others.
I'm obliged though to classic codger for speaking up in my defence, and the repost by Bob_C mod makes it difficult for me to keep quiet when others are in trouble.
I suspect, either as a consequence of the Digital services Manager's article in "Your Autism Magazine" Winter 2015 p41, or part and parcel with it, that NAS wants the forum to be squeaky clean, as NAS clearly wants the forum to be more public ("and someone is discussing their love of cupcake baking" a post I obviously missed).
I can understand NAS's concern that maybe some of us are not appreciative enough and often irreverent, though I think the over-policing runs a high risk of scaring too many people away. Forums don't work well if the participants feel they cannot express themselves for fear of a reprimand.
I got two particular reprimands. One was on the thread about an adult trying to get a diagnosis under General Chat. It is true I'm very uncomfortable about the frequency with which the moderators keep referring people to the website, when as I keep pointing out, the website doesn't contain any relevant information. I do look at the website when this happens. I made a comment about the keepers coming to change my straw... etc. which contained both my frustration with this policy, and my feeling stemming from the article, that we are just on show for people to gawp at.
Fair enough Avi Mod gave me a reprimand for this three days later on 10th November- "Hi Longman, we value your input, however the tone of some of your recent posts is coming across quite critical and judgemental"
However it was apparent to me from subsequent posts that that upset people. I'm broad shouldered I think. Fair enough if Mods feel I was rude. But Mods need to think long term about what messages they are sending out. Will people go along with it?
The other reprimand the same day was on the thread "I haven't said this in years but please would you help me with my CBT" under living on the spectrum, posted by felineaut. A swear word used by another poster had been rectified, and I was astonished enough to comment. Consequently Avi Mod reprimanded me.
OK the Mods want a clean non-critical room. There are ways of going about this change. Treating us like little children (well some of us are on the spectrum and must expect to be treated as less than adult), which I also felt was the drift of the article, in my view is unwise tactics.
I therefore decided to stay off the forum for the time being (this posting an exception) It is not that I feel vilified (but thanks classic codger for speaking up), or excluded. It is just I cannot be reconciled with the new squeaky clean forum.
I will be overjoyed if everyone else is able to conform with this new image, and everything goes swimmingly again. Just its not my thing. My feelings don't matter here. But I am having trouble continuing when I risk being reprimanded for my critical tone.
Also to Bob_C Mod. This is a forum to support parents of people on the spectrum and people on the spectrum. When you talk of very serious accusations which you have to look into, that does confirm to me that my time on this forum is over.
Don't worry about me. I feel sorry for everyone else. Squeaky clean it seems it will have to be from now on.
Hello classic codger
I read your post and am greatly concerned that you believe a member of the community (longman) has been “vilified” and “attacked” in a “vicious” way by our moderators. This is a very serious accusation which I have looked into. I cannot, however, find any evidence that, in my opinion, would justify your assertions. I would invite you to bring to my attention any evidence you have of this behaviour in a formal complaint so that it might be properly investigated.
Should any of our volunteer moderators, or NAS staff, be found to have behaved improperly we will take steps to correct this and issue an apology if deemed necessary.
Regarding delays in removing reported posts.
The Community is moderated by unpaid volunteers some of whom have autism. We have recently had some volunteers move on and we have been recruiting more to ensure daily moderation. We are not always able to respond as quickly as we would like but with new moderators we hope to improve this. Moderators try their hardest, with support of the Community Manager, to apply rules wisely. We do not pretend to get this right all the time.
Bob Chase, Digital Services Manager:
You can request an NAS Complaint Form by emailing socialmedia@nas.org.uk
I agree, the moderators are on to us like a shot if anyone uses a 'swear word', one that can be heard on the BBC most days of the week. But they are slow at removing requests for help with research which have the potential to do us real harm for the reasons already pointed out.
Ad-hoc survey requests are banned for very good reasons. The debate about taking part or not is invalid. It's perfectly OK to piut your own safety and privacy ar risk, if you choose, but it is most definitley not OK to encourage others to do the same. The rule is 'no surveys' but with the caveat that valid requests can be made through the NAS. There isn't much point in having a rule if everyone isn't going to abide by it.
Longman was, in my opinion, vilified because he got so thoroughly wound-up by the slow reactions of moderators. Like me, he reported several of such occurences, and like me he got fed up with them being allowed to remain for periods of time, even though they are a clear breach of the rules. His information to such posters is always valid because when it comes to academia, it would be rude and insulting to suggest he doesn't know what he's talking about.
I thought that the moderators' unwarranted attack on him was going to cause harm, and it appears to have done so because he isn't posting. I cannot imagine how vicious someone would have to be to not care that he feels excluded from our community. I've been told by a moderator that 'they're in charge so I should shut up'.
Way to encourage free speech and inclusion, moderators. That's my view.
And all this starts because these know-nothing, alleged 'students' ignore a very important rule. I cannot for the life of me understand why anyone would think that the diagnostic process is ever going to be informed by the desparately poor attempts of some struggling student to get their degree. Even less, given the quackery that surrounds 'aids and treatment' for autism, do I understand the tolerance for blatant marketing 'surveys'.
Those who say 'I don't see the harm' haven't 'got' the idea of 'phishing', have no way to verify that the poster is even genuine, and haven't bothered to read what the very experienced and knowledgable Longman says about these 'surveys'. I would suggest that if they did, then perhaps they would increase their understanding and be able to see their fundamental error in reasoning. For all others, if you want to know WHY the NAS made this rule, ask!
Electra also makes these points, very well, I thought, and so does 'socks. The point, surely, is that the NAS should be quicker to invalidate these posts when they are reported. Their delays just fuel the fire.
This forum rule does not stop you from participating in research. I think that if you go to http://researchautism.net/ you will find ways to participate.
If you think there are no hazards in such questionnaires then consider a psychology student who posts a survey, finds some results and then recalls and applies their findings through the next 40 years of dealing with autistic people and their families. They believed that the survey was scientifically valid but actually it was half baked with inadequate sample sizes from a skewed sample of people who happened upon the forum on a wet Monday evening? Can you see the problem with that?
Those seeking to do projects and theses with little preparation may decide that this forum is an easy place to conatc people who are autistic or have relatives who are. They cannot possibly know, and neither can we, the level of insight or knowledge that is possessed by the participants. Online people can be anyone, i can say i'm a six foot Iranian hairdresser and you would have no way of knowing if i was or was not. Doing research with data gained in this way is poor practice.
People doing this research are doing it to get a qualification. Whether you think it prestigious or not is irrelevant, its their goal. I have not made any 'derogatory comments' and resent you saying that i have. I have merely taken the seemingly outrageous step of not believing everything I'm told and not taking people at face value. I have not insulted anyone.
I don't feel judged or objectified. Research is constantly done on autistic people and we see little benefit from it, yet we are expected to be a compliant source of data for research projects and the like and be pathetically grateful for their intere4st in us. Many of us struggle daily with problems such as inability to sleep or be free from anxiety but these problems are never addressed by researchers.
Furthermore asking for help with such surveys is against the rules of this forum and anyone using the forum must abide by its rules. It is that and not my 'resentment' that means that this forum is not a place for researchers to seek participants in surveys.
It would be poor methodology if they were gathering data from the posts on here directly. Appealing for voluntary contributions to a survey through a national specialist organisation's forum is actually not poor methodology at all. They have identified that this forum hosts people who know a great deal about autism and are able to give an insightful view. This in no way indicates being unprepared, but even if they were that is irrelevant to the fact that many people would appreciate being given the option.
Personal data is not collected in these surveys. Only age, gender, and other relevant factors. Not your name and address.
If these people were in this for their own selfish gain they would take a qualification like Law or Economics, degrees such as this are hardly the ticket to big money! We don't know them and have no cause whatsoever to make derogatory comments on their motives. I think the real issue here is your other statement - mining our lives for information. If you resent this, that's fair enough, perhaps you feel judged or objectified which, in my opinion, is misdirected but that's your business. However, your resentment does not form a reasonable basis for excluding others from having the opportunity to participate freely.
As Longman has pointed out many times people who ask here for help in getting data for their academic work are usually the least prepared and sometimes the least able scholars. Using an open forum to get data is not good research methodology or a good way of keeping personal data safe.
And though people asking for responses purport to be trying to help us, often the work is of questionable use and when all is said and done they are mining our lives and our personal experiences to get data for an academic qualification. Its this qualification that is their real goal and any focus on autism is incidental.
Hi recombinantsocks. Thanks for your response, it's great to hear another user's perspective.
This forum should facilitate a sensible number of responses should these surveys be more freely allowed. Even if it does not, it isn't our problem as we are not the people needing the data. We are, however, the people who would ultimately benefit from the advances that could be made on the back of data collection.
While I do understand your point about vulnerable users, I find this type of hard line approach to totally contradict the values of fostering independence and freedom of choice. Safeguarding is one thing, censorship on the basis of disability is another...
I am unsure how even the worst designed of surveys could actively endanger a person, perhaps you could offer a realistic scenario, or better yet an example of when this has occurred?
Again, misleading results are not our problem. We are not teaching these researchers our data collection values. We are being offered the option to participate. I would say that a few informed responses would not actually yield misleading results any more than, for example, surveying people online through any other forum. Perhaps they are after qualitative data? Even quantitative data can be collected accurately through a small set of responses if questions are well structured. But we digress, as we are not the ones researching...
No, the fact that I don't get it does not make it wrong. It does suggest a certain amount of obscurity though, especially as I'm not the only user to raise the issue -- perhaps you could explain some of these real reasons that others understand in a bit more detail, aside from the vulnerability risk (which you have already highlighted)? I'm sure I'm just missing the obvious, happy to be educated by others with a greater understanding.
I had understood that by commenting on here and sharing my feelings, I am potentially making my representation to NAS known? I'm sure, as you suggest, moderators are present on the forum.
It is one thing to enforce sensible guidelines, as the hardworking admins do, but quite another to react with disproportionate negativity to a reasonable request and the discussion of others.
Survey Monkey is fine if you have access to a sensible number of people to invite to participate.
There are vulnerable people who visit the site with severe learning difficulties. The rules have been designed to make this a safe place for such people.
Genuine, well designed and operated surveys are not dangerous but the rules of the forum are designed to screen the good from the bad.
Limited opinions are no better than asking the man next to you in the pub. It is likely to yield coompletely unrepresentative and misleading results.
If you want to change the rules of the forum then please make your representations to NAS.
The fact that you don't get it doesn't mean that the current rules are wrong. I think it means that you haven't really understood why the rules are there. There are real reasons that a number of us on the forum do get it and why the majority of these surveys should not be approved by the moderators.
The rules don't prohibit surveys, but they do require permission and approval from NAS...
6. If you are looking for people to take part in research studies, surveys or media work then visit out page about research and participation to find out how to contact us. Do not use the Community to make these requests without permission and approval from the NAS.
Survey monkey is a valid research method used to augment understanding in many areas of study up to phd level.
It is not up to us to undermine their research methods, merely participate or not as we wish.
To assume that the vulnerable members of this group are unable to consent to participate is insulting. These are people who live independent lives, who do not need to have reasonable opportunities excluded from them.
Surveys only keep personal info to verify such information as age, gender, culture. This is not dangerous.
The limited opinions they receive will be better than none at all.
I don't get the problem, we should surely embrace the development of understanding in this area. Or at the very least be given the option to decide if we want to participate in each survey. To exclude people on the basis of NAS not authorising each individual survey surely goes against the principle of a forum open to contributions and input from everyone. Could there not be a specific section of the forum just for people who are researching to post on?
The forum is supposed to be for the benefit of sufferers and people trying to help sufferers. Vulnerable adults are amongst the participants. These surveys may try to obtain personal information and they generally won't have been authorised by the institutions as the methods employed won't yield valid, representative opinions about anything so there won't be any benefit to the forum members. The surveys are liable to be used to perpetuate unfounded views and prejudices about autism. The students need to understand that it is bad science and that they need to go away and study some more about statistics and scientific methods. They won't get any real facts from the survey, they will get a very limited set of opinions from a small set of people who don't statistically represent a broad and balanced view of life with autism.
It isn't a massive deal but there are real risks and genuine reasons why they should be encouraged to go away and learn to be better scientists.
