At this point in time, 8.45 on a Friday morning, there are 475 guests, and just one active member - me.
The most I usually see in here is about 250, so we are nearly double the norm.
Yet as I keep pointing out posts are very few at the moment, so what is it people are looking at? Clearly not current posts.
I'd say there's something unusual going on.
There are a number of possible reasons that I can think of for why the forum has gone quiet.
There are surges at times in the academic year when children/students are confronted with new school/college.Seasonal variation happens in all sorts of activities as people do different activities, and are affected differently by the four seasons etc. Also, statistically, just as buses arrive all together, there will be random luctuations in activity.
People can get exhausted with the relentless flow of suffering that presents itself through the different threads. The same old stories of missed diagnosis, inappropriate and inadequate treatment and lack of resources for adult sufferers, unmanagable children and uncomprehending parents can simply be wearing after a while. People may well leave the forum when they are getting more grief than benefit from participation.
We can also be very critical and negative at times. I ended up with diagnosis and participating on the forum because my managers felt I was relentlessly negative and critical of them. Sometimes that negativity surfaces in the threads and I suspect that newcomers (and forum veterans) can be put off by posts that don't offer encouragement and assistance but, instead, point out the difficulties and pitfalls of a given course of action. Sometimes this negativity results from the mental states that we are prone to get ourselves into. I suspect that the compassion fatigue, that I for one have experienced, may sometimes colour our ability to remain optimistic.
There is also a notable absence of professional input. We are largely left to our own devices and it can be the blind leading the blind at times. The advice given, although given with best intentions and in good faith, sometimes may not be current best practice. Sometimes we are working things out in our own minds as we write and I think people should try and bear this in mind and make constructive comments rather than trying to knock each other down. If we had more positive guidance rather than control from the moderators then the forum might grow and we might be able to promote more best practice and deliver more assistance to more people.
I agree with TC who says that we should not divide the forum up, the sharing of experience between people who have grown up with autism and those who are trying to bring up the next generation and who are often unknowingly affected themselves must be a benefit.
I don't think there is a single problem with a single solution. The variety and wealth of knowledge and experience must be nurtured and cultivated.
Thanks for taking it up True Colors. I'm trying not to be a one sided participant in this exchange. I may have misjudged the mods' intentions, or over-reacted.
This thread needs as many people's reactions, responses, objections or support as possible to get a workable outcome.
I don't think it is necessarily just the older ones who provide answers. I'm always amazed how much insight the younger contributors have, and providing support has always been across the ages on here.
I'm holding back hoping more people will contribute.
Hi Longman,
I agree it is not easy to be certain what the mood of the Community is. The number of posts goes up and down over time. We have not received or been made aware of (by the mods) any particular concerns (other than here) being expressed. I don't see any evidence of a "massive" loss of trust.
Of course people may just be disengaging without telling us why .. but I suspect this is just a lull that sometimes happens. I am not in denial that we should work to improve the Community but neither should we jump to conclusions.
Best regards; Bob
PS: Glad you are posting again
============
Taking up previous points...
I think you guys are raising questions that are of real concern some of which we have discussed internally but not openly with community members.
The community is certainly recognised as an important service among the many the charity offers. The reality is that need outstrips capacity in almost every area. The irony is that the more successful we are at raising awareness the more we are called upon for help.
I can understand why but it’s easy to think (and I don’t think you think this way) that the NAS has unlimited resources to deploy to meet every need. Of course we actually have earn or fundraise for everything we do and then prioritise. What we do try and do is be creative about how to provide support in particular. For example in regard to support, we looking at ways to recruit and train many more volunteers over the next few years.
Peer to Peer support plays an important role. One where NAS can facilitate without incurring significant costs. Our Parent to Parent support line is an example along with this online community. This benefits the advice givers, who are moved to help, and the recipients who know they are talking to someone with authentic experience.
What might be happening is that our (necessarily) low level of direct support (from mods and or helpliners) is seen as insufficient to the expressed need and that this is perceived as inadequate by long term members who may feel they are shouldering the load with little support. I can understand this and, if true, this is an area that needs acknowledging and addressing. I can see that some advice and support for members who may feel overburdened would be worthwhile?
Yes our paid helpline staff are well trained and supported and do have supervision. They do sometimes refer people to the website, but this is more often part of an in depth discussion. We also have some specialist advisors but the numbers of cases they can deal with each year is limited. We would, of course, love to have enough staff to answer all the calls, emails, community posts and social media questions in depth.
As I have said already the community does need a re-think. How we meet the calls for help and advice and support community members who offer it must be part of this.
Bob
Thanks for explaining that and I've scanned the blog and will have another look later.
Thing is though its not just me who needs reassuring. I started posting again at the weekend - you may have noticed. But the forum is deadly quiet. We've gone from some recent growth in activity to several days lull.
My only awareness of this forum is what I read, I've no other means of finding out (which of course makes this an odd community as we only exist in so far as we chat in here).
So I cannot really attempt to guess what is going on and present. My notion is there is a massive loss of trust, and people are waiting for some kind of reassurance, which your previous explanatory message went some way towards addressing, but there is still this deathly hush.
But as I say, it may be entirely in my imagination. Perhaps others may want to comment on this posting and tell me I'm talking nonsense.......
Hi Longman
The "N Users and N Guests online" refers to members (users) logged in and people (guests) actively viewing the pages ("lurkers") at any one time.
The posts are ALL indexed by Google so that they are findable and readable. This is a kind of hidden benefit of the community. Many thousands of people have read the posts without ever once posting. I would not say thay are waiting but benefitting from reading the threads created over all these years.
By the way our Helpline and Supporter Care Manager Kellie Hains has just written a blog (scroll down) about the helpline. I thought you would find it interesting.
www.autism.org.uk/.../blog-information.aspx
B
Hi Bob,
I think some good news would be really meanigful at the present time.
The forum has its low points when few people post, but usually this is accompanied by low numbers of "guests", indicative of holidays and such like.
I never quite know what the numbers of onlookers means. Are they actually reading the forum posts, or is the number only an indication of the numbers on the communuity pages, or just on the NAS site at all?
The thing is when I logged on just now there were 265 "on" but only one (new) member and there has been only one posting overnight (unusually low).
The numbers of posters, some clearly distraught, are still coming in.
I guess there are at least 265 people out there waiting for reassurance.
Longman raises a very important point. This forum serves different needs.
a) It is a chat-room but it is mainly discussion about the problems of living with autism, there are some discussions of music, and other interests but these tend to flounder as we tend to have more differences in these things than things in common. The thing we have in common is the autism and most people, particularly those who come on the forum, are struggling with some aspect of that.
b) It is a frontline support and asssistance forum for people who are often desperate. People can find it easier to get going on here using written, anonymous communication than they have managed when dealing with GPs and all of the other professionals that get involved. It is traumatic and stressful to be exposed to the torrent of systematic failure of the so-called systems that washes up on the forum. Longman raises some valid points about the impact of that on the untrained forum member.
This thread has actually revealed a lot of issues that I was only vaguely aware of. I think we have had thoughtful and revealing feedback from NAS and I am more reassured that the issues that have been festering are going to get dealt with. It seems to me that the moderators and ourselves perhaps need more backup from the helpline staff who, hopefully, have more formal training and current knowledge of what can be done to help than we have sometimes. I am aware that my knowledge is sometimes that of the well intending amateur but I am also aware that we can only do our best so I try not to get too involved in individual's issues. Keeping this balance is not always easy, particularly when it is clear that the people asking for help are in very real and dire straits.
I agree Bob C-Mod has summarised the main concerns, but I feel there is something more crucial here. I do wonder if NAS realises what we've got here.
Daily people post on this forum with significant concerns, distress and helplessness. They usually get answers from forum members sharing their insight and experience and re-assurance.
I greatly appreciate KatJackKev's reassurance to me that my attempts help - I feel dreadfully inadequate most of the time. I think it worth quoting KatJackKev's last sentence:
"You may get it wrong, so might anyone, but often when people reach out in desperation it is cathartic just to have that communication with someone who is trying to help, which is what the forum offers".
For some reason we get lots of people posting desperate for help. If they are coming to the forum for this, is the forum taking the brunt of help requests?
I don't know what happens on the help line. For all I know they are referred to the website, the same way as the Mods do here. But preasumably your helpline operators are trained - we aren't. Presumably your helpline operators get stress counselling, we don't.
Although activity in the last fortnight has plummetted, in the normal way of things this forum is very busy, with people sharing their insight and helping others, and it is reassuring that it is recovering, with the regulars once again offering help to others.
You talk about starter sites and oldies and newbies as if all this forum is is a chat room. It was strange to read in the article that a typical posting was someone discussing baking cupcakes.
What goes on in this forum is the front line in autism help. And you plain just don't know it.
That sounds like an accurate summary to me Bob - especially agree when with the sentiment that we all debate because we care - this is, as you say, far better than indifference.
Longman - you may feel that your advice is just your personal theory, but that devalues insights which you have gained from your own experience, reflection and research. Obviously no advice can be perfect for everyone but I don't think you should worry about offering your insights. Peer support is valuable because it is tailored to the situation, it is ungoverned by the strict principles that approved, generic medical advice must adhere to, and it comes from a reflective inside perspective. You may get it wrong, so might anyone, but often when people reach out in desperation it is cathartic just to have that communication with someone who is trying to help, which is what this forum offers.xx
Hi Everyone,
I wrote this before seeing longmans post above. I wanted to respond properly to the issues raised and engage in the discussion. Apologies to KatJackKev for using this thread. Hope it's OK.
Resources are always an issue but we have been busy on the website and will launch a mobile friendly site in early December. Our dilemma is making sure we don't have so much information on the site we cannot possibly keep it up to date but provide enough that is easy to find. Research with users has shown up this issue which we are trying to address. We do have a content team and I am always happy to forward comments about the information on the website to them . but I can't guarantee it will be acted upon. B
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I’d like to refer back to some sentiments posted a little earlier on in this thread which I thought were very thoughtful. Recombinantsocks wrote “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”. Wise words which I will do my best to take on board.
I believe we all want to make the Community the most useful it can be for as wide a range of members as possible. Wouldn’t it be so much worse if we were indifferent? Having this debate, as difficult as it is, does means we care about the Community.
So let me try and summarise what I am hearing from participants in this thread and please do correct me if I have missed something or not expressed these well. I’m trying to capture this in descriptive but non-loaded statements. Sorry if I get this wrong in places.
Some members feel that we (the NAS) are deliberately trying to change the culture of the Community. That we want to purge “difficult members” and “sanitise” discussion so that we can promote a “public image” of the Community as an inoffensive place rather than one where “we can air our views and seek honest advice and get support from our peers”. There is a feeling that “robust” and discussion which autistic people may prefer is unwelcome in the Community.
Some members are feeling that the moderators are interfering unduly in conversations and are “overbearing” and have been inappropriately critical and not consistent in their application of the rules.
There is also concern that the moderator’s responses are not sufficiently tailored to the situation and that they overuse standard template responses and too frequently refer users to the website. It is mentioned that the website sometimes does not have relevant information.
There is a worry that directing people to call or email the Helpline is unhelpful or disingenuous when getting though is difficult and replies take a long time.
Lastly there is a feeling that Community Manager(s) have failed to sufficiently involve Community members in discussion over the development of the community and issues.
I hope this is a reasonable summary, please let me know if not.
I will now do my best not go into a defensive mode because I think some valid points are being made Equally, I hope providing some background information will help to clarify why things as are they are.
I would also like (further on) to discuss how to engage better with Community members so that we can jointly work to improve the Community. Some good ideas have already been put forward and we are very open to ways in which we can re-jig the forum to better meet members’ needs.
I have to honestly say we have no “agenda” or “policy” to “sanitise” the Community for any publicity gain. It is true that the Community was originally conceived as “starter” Community where people who have never joined an online community before could feel safe and either stay or go on to join others. This is why we list other communities on the Community home page.
When the Community was setup, few other (starter) sites existed like this and we felt the NAS had a role to play here. What we may see happening is a conflict between this “starter community” concept and the fact that the community is now over five years old and has to cope with both “newbies” and “oldies”. (If you will forgive the terms)
To maintain the safe space we ask the volunteer moderators to apply the rules objectively. Our autistic moderators are particularly diligent at this. My suspicion is that this approach may feel restrictive to long-term members, who may expect a more nuanced response. There is certainly no conspiracy to focus on particular individuals.
I’d like to discuss how we might address this tension. As has already been suggested, perhaps we need a specific area where more robust views can be expressed. Signposting this to members and adding a warning. I am open to ideas.
Regarding concerns about the level of support moderators can offer, and its relevance. This has been a challenge for us from the outset and is one I know many other communities share. While our moderators receive training and support from the Community Manager and often consult on responses, they are not trained autism advisors like the Helpline team.
They have to work through dozens of posts every day and have only a short time in which to respond where they think they can and where it is useful. So they use templates and referrals to the website as the first option but can refer posts to our Helpline team for advice. But of course, here is the catch, our Helpline team are doing a sterling job answering lots of calls, emails, social media posts and requests from moderators. But they have finite capacity. We are constantly fundraising to improve this situation and we are training volunteers to help but it takes time to build capacity and maintain quality. And of course, all the time the demand is rising.
In addition, our policy is to let peers/members answer questions rather than have moderators “jump-in” all the time. Where there is no response after a while we do our best to come in with a helpful suggestion but I agree this is often limited in its scope.
Regarding missing some posts that breach rules. Yes, this does happen sometimes especially when we have had fewer moderators available due to sickness or breaks. We are currently building the team up again so that we have good cover on every day. Even so there may be times when this happens.
After five years, it’s time to take a fresh look at our Community. The technology itself is looking outdated and, for example, is not very usable on a smart phone. We have set aside some resources next financial year to make improvements.
We clearly also need to do better engaging Community members in decisions about the Community. I have some ideas on this but would welcome suggestions from participants in this thread. There is a sense of belonging and ownership which should, and I hope can be, harnessed given the right vehicle and goodwill.
One Community is not right for everyone and never can be. I still think we have a role as a safe place for ‘newbies’… where they can benefit from having knowledgeable and compassionate ‘oldies’. We perhaps need to work on the needs of longer term members too. When one of these leaves, it is a loss to the Community.
Best Wishes
Bob Chase
Please don't worry KatJackKev, debate is always useful on here. I'm sorry this thread got diverted over the reprimands arising on other threads.
I'm guilty of being very research-ethics minded about student surveys. Some very good points have been made in the debate, and I need to think about whether I charge in too quickly. It has been interesting to wait and see who else comments.
The debate also exercised my concern about the Mods not immediately stopping surveys. I feel personally it is not a good idea to disclose personal details, especially about children, on student surveys, because there isn't enough control over access to the raw data collected. So I feel, as clearly do others, that the longer the survey monkey link remains open, there is a risk people thinking the research is real front-line research, may be tempted to respond. But maybe I'm being too "bull in a china shop" about this.
I'm glad my advice was helpful. Trouble is I really worrry about giving advice - usually if there isn't any ready response from other parents, I try to offer something. Thing is these are my theories based on my experiences and experience of working with students on the spectrum and one or two other contexts.
The trouble is there is an acute lack of helpful information. I've already got into trouble for criticising the NAS site and the Mods referring people to it - maybe I've just got to learn to live with the fact NAS probably hasn't the resources to upgrade. But there must be productive research somewhere that provides helpful material. I do read around before replying but it only reminds me how little is out there.
The very obvious thing about this forum is so many people, almost every day, facing real crises, and finding no resolution from the system. It is good that the forum is able to provide this through peer support.
I just get very frustrated by the Mods referring people to the website, as if the peer support isn't adequate, or they disagree - as if they are saying don't waste your time listening to these idiots, the facts are on the website. So what is the point of the forum?
It might be valid intervention if there was stuff on the website, but there really isn't anything that helps so very many questions raised here. One obvious example is melt-downs versus "challenging behaviour" as far as the website goes. The NAS website has nothing I can find on meltdowns - yet it is one of the commonest postings. Maybe there is, but if so it needs to be findable.
However my current resolution is to try not to let this get to me, just try to live with the lack of information, and do my best, like everyone else here, to offer some support and consolation.
Just caught up with this. I'm new here, but for what it's worth Longman, your advice to me about my son has been insightful and invaluable - things are much better because you can offer insights which other support services haven't been able to. So thank you for that, it would be a shame if you were to stop.
The point made about a forum where many members are naturally rigid in their views is a really good one. I know I'm guilty of this, and having taken a few days to think, my view has changed a bit. Although I still disagree with many of the original points that doesn't make them invalid - the important thing about a forum is that it should be a place where everyone feels safe. So if others don't feel safe with online surveys and research, regardless of my personal opinion, their feelings are more important - because their need for safety is more necessary than my want to participate in these.
I'm sorry to have started a debate, it wasn't my intention to cause trouble, merely to give my view.
Regarding the mods issue, I don't feel I've been here long enough to comment except to say that diplomacy is probably the key skill all mods should possess! No-one should feel vilified, even if that was not the intention.
I'd like to make peace please
Me again, breaking my own temporary rule.
I agree with Recombinantsocks that we ought to reflect. My strategy has been to try to take time off, and let others have their say, and maybe let a new dynamics development, in case I've been just too over intrusive. Believe me I've been reflecting.
But there is an underlying problem here, which I was considering addressing via the complaints form.
NAS clearly wants to make changes - the article and the changed moderator tactics came about simultaneously. But I feel they should have tried to make changes with us on board. Not like parents telling off naughty children.
They could, for example, have made a general request for a less critical atmosphere from some of us, without naming names. They could have given us another mechanism through which to address growing concerns.
Instead they suddenly went for public reprimands - not just me - getting two in one day, but others as well. The Rules clearly say that "if these rules are broken the members of the community team will discuss this with the offender and try to resolve it. That in my understanding means write to me personally.
The effect of what they did was very striking. I went quiet, as I've explained. Quite a number of other posters got very agitated, and rightly so. What the Mods did to me, and some others, totally undermined community confidence.
I'm grateful to classic codger for speaking up on my behalf, but I venture that in part this was a reaction to the very real and conspicuous downturn in community activity. Everyone seems to have been stunned by what happened.
The matter was made ten times worse when the Digital Services Manager took up classic codger sharply in public for daring to cast aspersions on the Moderators, and suggesting he use the complaints form. I suggest the Digital services Manager should categorically not have responded publicly in the way he did.
Things might have settled down and resolved themselves but I'm pretty certain the Digital services Manager's posting came over as paternalistic and bullying. And really put a big dampner on things.
This is a community. A community that includes vulnerable people, and people in crisis. It needs to be handled sensitively. Communities like this need tactful handling because these public dressings down hit everybody, not just those they are aimed at.
What is not helping either is the sudden silence - very much lowered presence of the moderators. That just leaves the feeling that the reprimands could start up any minute. It isn't restoring confidence.
The moderators must now give reassurances and restore confidence. I don't personally know how to do that without doing more harm than good.
YL raises an interesting question. Could the mods keep to nudging and reminding rather than reprimanding and sanctioning?
I think the other coment I would direct towards ourselves. Do we need help in remembering to try and identify solutions rather than just identifying problems? For example, there has been plenty of criticism of the mods on this thread but have there been enough suggestions of alternatives and examples of how they should have approached issues? We don't take criticism well and we don't want a new mummy or daddy but exactly what is it that we do want from the mods? This is something that I have got into trouble at work with. I am good at vociferously criticising situations, bosses etc but less good at saying what I would rather see happen.
Thank you, True Colours and yes, I did feel upset enough to leave. I am also humbled that you might have missed me if I had, so I thank you for that too.
Dancing Queen, again I am humbled by your supportive words, especially as you include my favourite characters. It's very nice to hear that sometimes, the things we say make sense to someone.
I think the idea for a section solely given over to the 'mature autistics' is a good one. For my part, I do sometimes forget that struggling parents see these posts, and young people too, so I agree that there's a certain readership who are sensitive to the kind of robust interchanges that we need. A timely reminder that different people come on here with different needs, and perhaps the NAS should consider more useful ways, such as different sections, to enable people to contact and talk with the most appropriate others. A private message facility would be nice, too!
