Separate forum/community for autistic adults ?

And thanks for your clarification, too.

I appreciate the "old timers" taking time out to explain this to "noobs" like me.  I must admit, many of the events have seemed very confusing without knowing the context.

I do get the impression, as you suggest. that the NAS treats the forum as an inconvenient afterthought.  The outdated technology and lack of trained counsellors is poor in my opinion for a charity that is the primary first contact point for people on the spectrum and their carers (at my diagnosis, NAS literature was the only thing I was offered!).  With it being so common that autistic people dislike the telephone, it isn't difficult to see why the forum would be a more comfortable place for people on the spectrum to come for help.

I don't begrudge offering what little help I can here - but only because people like you, CC and many others have done the same for me.  I certainly don't do it out of any loyalty to the NAS.  I have never even considered becoming a member of the organisation, as I realised very early on that adults, particularly those with a late daignosis, are largely invisible to them.

When I get the usual e-mails from the NAS, my usual response is to skim through it, then think "really, that's it?!", and in the bin it goes.  I don't want to hear about "autism aware" concerts at the other end of the country and that I can't afford - that really doesn't help to make my day dealing with an "autism unaware" society any easier.

Thanks for clarification.

There's no question there are causes of conflict between adults with autism and parents seeking help - there has been one in the last day or so, a parent using terminology what got an abrasive reaction from someone with autism not liking being so described. But this has been happening quite often for five years - I'm one of the longest on here.

Over the last three months however the friction has been between long established members and the moderators, who seem to be making a big issue out of moderators' rights. One or several of the moderators are on the autistic spectrum and seemed to be hurt by almost anything, and that drove up the tension.

The way CC was very obviously picked on and publicly humiliated has been the major flashpoint. Although I was suspended because, coming to his defence, I made general comments about heavy handed moderation, somehow it was explained as:

"because of a complaint from another member around derogatory terms which had been used either towards or about her and which we needed to review. The intention is not to over-moderate or unnecessarily police, but we do have a duty of care of all our users/moderators and the language which was used (though I accept you meant no offence by it) was offensive to her and she felt publicly demeaned by it".

I asked them to clarify what I said in general about the moderation being school ma'amish, and the moderation needed to be able to cope with likely tensions, but I never got any clarification. I assume the person who complained was a moderator, but I've no information to that effect.

CC's infringement seems to have been an interpretation of intent rather than a reality.

There having been previous public humiliations over little things, the suspensions of CC and myself caused a panic. Everyone now feels the site is toxic. Everyone has gone. The online forum is barely active at all.

And I don't think NAS cares. I don't think NAS ever had any idea how it works, and they probably think it will magically recover in a few weeks - which it might. But, there's an awful lot of distrust and feelings of betrayal.

My apologies if my post gave the impression of placing the blame, or all of the onus for a solution, on those of us with autism (or parents, or even moderators) - that was not my intent.

I just don't see how we'll find a long term solution to the current stand-off without acknowledging that some autistic behaviour might be offputting to some non-autistic users, or that some parental attitudes can be frustrating for older autistic people.  In neither case do I think that the behaviour in question is pre-meditated or intended to cause any discomfort - hence blame does not seem appropriate attributed to either party.

However, it does appear to me that the 'flash points' I indicated are precisely where the intervention of moderators is most likely, as I have also seen elsewhere online.  I was simply trying to make the case for why I think a separate adults area might mitigate that friction a little, as well as just making the site more functional for everybody that uses it.

I've only become active here recently, so I don't have the benefit of having seen the previous dynamic at work.  It's quite possible that some of the people who are no longer members were precisely the people who helped maintain the previous harmony, and that without them, we may need to look for other solutions besides just "turning back the clock" - in other words, returning to the previous moderation policy may not be the panacea that some people expect, because the community itself has changed in some way.

At the same time, I am perfectly aware of the negative impact that heavy handed moderation can have on a site too - a light touch is preferable on any forum.  My own preference would be for moderators to be made up of regular forum members - the model used by the sites I frequent that I consider most approachable.  But that is not always possible - it is a burden that not everyone is comfortable with at the very least.

My own personal opinion about recent events, based only on my short membership of the forum, is that the moderators here are more likely poorly trained, and struggling to know what to do when a confrontation arises, rather than being heavy handed for political reasons.

If another users reports a post as having offended them, moderators are obliged to act, and I haven't seen any evidence to indicate that they are spontaneously intervening in threads where they have not been explicitly asked to by another site user.

I certainly agree that the situation with CC could have been handled a lot better.  Moderators should always make sure that both parties involved in a dispute know exactly what is being done, and should not post publicly about pending cases unless there are very strong mitigating circumstances.  It would seem that CC was poorly informed about what was happening, and felt that he was being blamed for something to which no blame should have been attributed.  Whether through policy or naivety, I do not want to see that repeated, and I certainly think that some lessons urgently need to be learned by the people who administrate the site.

Except that the forum flourished for five years. A lot of the parents' section questions were answered by adults with autism. A few parents comnforted other parents.

Yes there was friction due to the misunderstandings and prejudices you describe, but it mostly got sorted quite tactfully and discretely between members and moderators. Ocasionally there were really big flareups and the odd fiery regular disappeared, apparently amicably.

That is until three months ago when very intrusive moderation was introduced. Now almost all the regulars have 'left'.

Maybe it will recover with new regulars, and perhaps in future a higher proportion of parents. But they will need to be accommodating with the level of moderation now in effect.

However I do think it most unfortunate that some people on the spectrum are keen to place all blame on the behaviours of people with autism.

None of us are trained counsellors and none of us get stress counselling. We each of us only exist in here under our profile names, we have no means of communicating outside this forum. Any distress caused to individuals, and being able to comfort each other, has had to be addressed in public.

We have repeatedly asked for some sort of support and privacy and it has been refused. This whole on-line community has developed out of goodwill of the participants.

The goodwill has gone. Was that all down to the foibles of people with autism?

A lot of good points there from Technophobe.  I'd certainly be in favour of PMs - it's healthy for a forum community that not everything is spoken in public, just as in real life.

I have used a fair few forums over the years, mostly computer programming sites, and have been a volunteer moderator on a couple of them.  Fortunately, I had very little confrontation to deal with as a moderator, but when it does happen, I can assure people that it is not a comfortable position to find oneself in.  Outright "trolling" is actually not a major problem; community peer pressure usually deals adequately with that if a forum is healthy.  Rather it is issues where one can see both sides, but an immovable object has just met an irresistible force - i.e. entrenched but polar opposite opinions, honestly held in good faith by both parties.

Unfortunately, on this and other sites shared by autistic people and carers/parents we have a situation where such differences of opinions is likely to happen for a couple of specific reasons..

Firstly, some parents of young autistic children (particularly if they have extreme traits such as being non-verbal), and some autistic adults (particularly those that believe in a particularly absolute form of 'neurodiversity') are never going to see eye to eye about certain issues.  This is not only a problem here - this fault line seems to exist across the western world, and I have seen its manifestations on most other autism forums, including those that cater only to one cohort or the other.

I do understand why 'cure vs. diversity' is such an emotive and divisive issue, but I also believe that discussing such things should not come before helping with a person's immediate crisis if they are obviously in distress.

Personally, I have been a little shocked at how quickly some parents are "shot down" for expressing opinions, or using language, inconsistent with neurodiversity.  Our society's accepted wisdom about autism is shockingly innaccurate, and apart from those of us who are touched by it personally, there is little incentive for a anyone to ever learn the truth.  I believed most of the same misconceptions about autism myself until only few months before my diagnosis, as I'm sure many other late diagnosed adults did.  As the aphorism says - let he who is without sin cast the first stone.

IMHO, insisting that people be better informed about autism before using the forum is also missing the point of the site (another opinion I have seen expressed recently.)  This place exists so that people can get informed about autism - insisting on prior knowledge would set up a paradox where people can't get informed because they're not informed enough!

The second major 'flash point' that I see is that autistic people are unfortunately prone to rubbing non-autistic people up the wrong way, and vice versa.  After all, certain social differences are one of the hallmarks of autism.  Although the internet is a great way for many autistic people to communicate, we shouldn't delude ourselves that our social deficits magically disappear the moment we go on-line

So, a forum that is inclusive of  autistic people must find a way to deal with different ways of being social - and that is probably always going to mean relaxing some common social expectations that people on the spectrum might find challenging and would otherwise exclude them.

But I don't see how you can do that and still expect non-autistic people not to be offended occasionally by our often more literal and blunt way of expressing ourselves.  The level of public awareness of autism is sadly too poor for our behaviour not to seem at least a little surprising to people who have never experienced it before.  And I can't stress enough that, rightly or wrongly, the NAS is many people's first point of contact following a diagnosis - so it is very common to have little or no experience of dealing with autistic people in their 'natural habitat' when first coming here.

That's why I believe there needs to be at least a separate section on the forum where people are forewarned that "here be aspies", and there's some kind of indication to think twice before taking offence.  Conversely, it would be understood that in the 'parents and carers' section, moderation might be applied more strictly, in order to avoid compounding the distress of parents/carers discovering their loved one's autism for the first time.

Not that parents/carers should be unwelcome in the 'autistic adults' zone, or should be shunned by those of us on the spectrum.  We do have plenty of good advice about living on the spectrum that may benefit parents and their children - we lived through it, after all.  And maybe their autistic children would grow up to come here and give the old-timers some advice occasionally.  I've met autistic teenagers who are far more wise about being autistic than I am!

OK, here are a few more things I forgot to mention:

(a) How about having a Personal Message facility on the forum? Most other forums have this.

(b) Can't think of a (b) just now...

Trogluddite said:

@ Bob C

You asked about other web-communities that folks use.

I've joined two other sites where I read and post, and I feel that they are quite good examples of some of the issues with finding a community where one can feel comfortable.

AspieVillage.  This is a really nice, quite small and close knit community specifically for adults on the spectrum.  I love it to bits, and the people are great.  But that can also be it's weakness - the fewer people there are on a forum, the less likely it is that you will find someone who shares the same experience that you wish to share.  The few other UK base sites that I looked into seem similar in this respect, and it took me a while to settle on AspieVillage as the one where I felt most at home.

WrongPlanet.  Exactly the opposite problem.  It is very comprehensive, but used by so many people that several people can add new posts in the time that it takes me to write just one - the sheer quantity of posts can be very overwhelming.  As with several other sites I looked at, it is also dominated by users from the USA - so posts relating to UK specifics (e.g. disability law etc.) tend to be marginalised and hard to find.

As I mentioned before, I think we need to recognise that for many people, when they or a loved one first receives a diagnosis, the NAS site is the first resource that professionals will point them towards.  Getting a diagnosis can be confusing and frightening for some people, and sometimes people are looking for help with an imminent crisis - neither of which are the best time to be trawling the internet for an alternative.

Ideally, I feel that folks should be able to come here, and easily identify a "sub-forum" where they are likely to find people in a similar situation to themselves.  It is very difficult sometimes to think of a search string that will isolate only those posts pertinent to a given situation (the word "adult" can easily show up in a post about the education of children, for example) - and it would be wrong to assume that all users have extensive experience of using internet forums.

Hope you find this feedback useful.

Only just 'found' this thread. The briefest way to respond, for me, is to say that I agree pretty much 100% with Trogluddite's comments (in both posts).  

I'll go on to say that, in my opinion, an 'adults only' section should be set up, where over 18s only can join and where the odd bit of swearing won;t bring instant condemnation. The forum could set up some kind of filter, where certain words get published either as strings of asterisks or as alternative words. This should be reserved for the few really strong swear words, in my opinion. Using words like 'ar*e' of sh1t shouldn't be deemed beyond the pale, not on a forum for over 18s only anyway.

I am a member of several vintage motorcycle forums (one of my 'special interests'). It is interesting to notice how each forum has its own distint character. My favourite has exactly the bad language filtering system I've described above (the *** typre), and minimal moderation. The mods only step in when somebody clicks on the 'Report this post' button, or when they see for themselves that something obviously offensive has been published. As far as I know (it has never happened to me), they them contact the offender directly, propose a solution (eg: the offender contacts the offendee to make amends, and if the offendee accepts, the matter is closed. Or, if the offender refuses or the offendee still feels aggrieved [and presumably if the mods consider that sense of aggreievement reasonable in the circumstances], the offender is suspended from the forum. I think one or two people have been suspended for several months, and I believe that n very rare occasions - when people have uses race-hate for example - they have been banned permanently).

It seems to work, is my point. That forum is effectively self-moderating. There are oneor two members who like the look of their own tying and have massive egos, and tend to belittle others when they get the chance. I'd love it if they were barred, but in practice, other members pick them up and keep them in check.

Changing tack here: It seems in the ature of forums that people go to them when they have problems. Nobody writes in to say how everything is going along just about OK.  They use forums either to seek help, or in the hope that they might be able to provide help. The same process works on review sites - they are packed with negative reviews but that doesn't mean everyone has had terrible experiences at such and such a restaurant, or with such and such a product. There could be a vast majority out there who never even think about finding a review site becasue they've never had any problem.  Same kind of thing goes for forums. If they don't welcome people who only visit seeking help / advice / support etc, they will shrink and die, or become cliques where a handful of old-hands bang on ad infinitum.

Back to the point (I think):- I do not think any alternative forum exists which would fulfil the rold of providing a forum for adults with ASd.

I do think the NAS ought to provide such a service - I'd find it rather astounding if the NAS thought otherwise, in fact.  

Running a good forum probably takes a lot of time and effort. Users of forums should ask whether they'd like totake on the role of moderator before being too harshly critical of those who are already doing that job (especially if the existing mods are volunteers. Not sure what the situation is on this forum - maybe should be told?).

Finally apologies for typos, I'm too lazy to go back and correct them just now!

Inglewood

Two ticks

You might find our own NAS Policy of interest

It is a PDF download!

www.autism.org.uk/.../Recruitment and Selection Policy.ashx

Hi Pentadactyl

I don't think you have sidestepped the issues at all.

I agree we should be ready to ask these such fundamental questions again.

Just one point

You touch on resources "would it be useful to have NAS staff dedicated to providing answers or guiding discussion?" which is very pertinent. This is an issue for all our advisory services and the Helpline. Having paid staff to meet every enquiry and demand in every media including Social Media would cost an enormouse amount .. which we would have to fundraise for. So we are looking at how we can build up, train and support volunteers to provide a level of information and support across channels. This is part of the NAS volunteer strategy but it does not happen overnight.

We have always had volunteer moderators but we don't ask them to offer "expert" advice as its outside their remit... and a big responsibility. Whether we we should develop the moderator role in that direction OR provide direct "help and advice" in other ways is part of this discussion.

Will make sure your other points are folded into the discussion.

Bob

Having Mild Aspergers myself and currently not working, I have learned that some companies have The Two Ticks accreditation, which garauntees people with disabilities an interview as long as they meet the minimum requirements for a job.

Tonight Ive done a search on the internet and found a list which I have gone through and listed the ones that I may want to work for so I can keep an eye out for jobs they may advertise.

Is there a section on this website about the Two Ticks scheme I that I and others could reference futher, and in the future, as I would find it very helpful when researching jobs and possible employers?

Hi Bob,

I agree with 'Longman' in that this forum appears to be largely used by people seeking advice regarding often complex issues which are rarely, if ever (at least in my experience) discussed anywhere else. These people appear unassuming and, I believe, genuinely feel that this is their best hope at recieving a useful answer.

The real question is "What is the NAS' view of the purpose and future of these forums?". You must ask yourselves the following questions:

- How does the public (or at least general visitors to these forums) view the forums?
    - does this view match the NAS' view
    - Should the public's view change or does the NAS need to review?
- What is their experience of the forums (i.e. do they get what they visited for)?
    - How do we facilitate this if they do not get what the want?
    - Do they want what they actually need?
    - How do we promote them getting what they need?
- Do we want to retain them:
    - What is the general post count for new users?
    - How can we retain users?
    - Do we want to retain users (for example; would this increase forum costs (negative), increase the forum's profile (positive) or be used to increase the forum revenue (positive)?
- Does the user experience and/or user retention meet the NAS' requirements or vision for the forums?

As an example: if the forum is used (and you wish it to be used) as a 'go-to' site for those with ASD or those supporting them and answering their questions, would it be useful to have NAS staff dedicated to providing answers or guiding discussion?


To give my opinions to the proposed questions directly:

1). Either the site guides it's community or the community guides the site. Internet discussion board popularity waxes and wains over time, but you must decide first what values the site has been founded on and how these could attract and maintain community/user base (if one is wanted/needed).

2). The NAS should not see this as just 'another' online community/forum. It should attempt to give it a purpose or goal.

3). No, regardless of the final decision a dedicated moderation team will be required to ensure that the forum does not either disintigrate or become filled with advertising. Where community moderation is to occur, there must be both safeguards and (more likely) some form of incentive to retain them.

4). In addition to the above, who, for example, would be permitted to post in an 'under 18s' forum (i.e. would under 18s giving advice to under 18s be a desirable outcome)?


I think I've sidestepped what you were actually asking here, but I hope the above is of interest.

Hi MatBucks

Just want to quickly acknowledge your contribution and then take some time to reflect on your points (with the folks here) .. and there are some good ones. Having more clarity regarding the rules is something I think we should definately work on.. for example.

I hope other members will find your post equally stimulating

Bob

PS: Curious .. I have sent a mesage to Aspie Village and Im waiting for a reply

Thanks "curious"

Thats really useful

Bob

Bob C said:

Thanks for those reviews Trogluddite

Aspie Village has been around a while I think. Currently we don't list this in directory of other communities (below). We usually ask if they are happy to be included. Do you have a contact there?

community.autism.org.uk/communities

Keep the ideas coming .. 

FYI  Im looking at some new technology for the Community and will explore how it might support the sort of inside but separate concept.

Regards

Bob

 

 

Aspie Village: No email address given, but the 'contact form' for Aspie  Village is at aspievillage.uk/memberlist.php

Autscape has a chat list and annual conference http://www.autscape.org/ email info@autscape.org

ASD Forum is also UK based, quite slow going. www.asd-forum.org.uk/.../ email moderators@asd-forum.org.uk

Thanks for those reviews Trogluddite

Aspie Village has been around a while I think. Currently we don't list this in directory of other communities (below). We usually ask if they are happy to be included. Do you have a contact there?

community.autism.org.uk/communities

Keep the ideas coming .. 

FYI  Im looking at some new technology for the Community and will explore how it might support the sort of inside but separate concept.

Regards

Bob

@ Bob C

You asked about other web-communities that folks use.

I've joined two other sites where I read and post, and I feel that they are quite good examples of some of the issues with finding a community where one can feel comfortable.

AspieVillage.  This is a really nice, quite small and close knit community specifically for adults on the spectrum.  I love it to bits, and the people are great.  But that can also be it's weakness - the fewer people there are on a forum, the less likely it is that you will find someone who shares the same experience that you wish to share.  The few other UK base sites that I looked into seem similar in this respect, and it took me a while to settle on AspieVillage as the one where I felt most at home.

WrongPlanet.  Exactly the opposite problem.  It is very comprehensive, but used by so many people that several people can add new posts in the time that it takes me to write just one - the sheer quantity of posts can be very overwhelming.  As with several other sites I looked at, it is also dominated by users from the USA - so posts relating to UK specifics (e.g. disability law etc.) tend to be marginalised and hard to find.

As I mentioned before, I think we need to recognise that for many people, when they or a loved one first receives a diagnosis, the NAS site is the first resource that professionals will point them towards.  Getting a diagnosis can be confusing and frightening for some people, and sometimes people are looking for help with an imminent crisis - neither of which are the best time to be trawling the internet for an alternative.

Ideally, I feel that folks should be able to come here, and easily identify a "sub-forum" where they are likely to find people in a similar situation to themselves.  It is very difficult sometimes to think of a search string that will isolate only those posts pertinent to a given situation (the word "adult" can easily show up in a post about the education of children, for example) - and it would be wrong to assume that all users have extensive experience of using internet forums.

Hope you find this feedback useful.

Seems I cannot post anymore. If so I'm quitting my membersip of NAS

Hi Bob C Mod

I don't think there is much on the net specifically for Adults with Autism. There is lots for parents and carers of children with Autism. But have personally found very little and I have looked and looked over the last year since having had the diagnosis. I am so frustrated that there is so little support out there. Naturally it is different for parents are concerned about the schooling and behaviour and we can't learn from their inputs. I benefit from online forums as such as can safely say here what I wouldn't say if i went to an actual group.  Not that I write too much as such, just easier to say some things in written word than verbally.  But there is so little support out there and even NAS is often more about parents experience with children so 'I' end up feeling redundant as in it supposed to be for all of us.  It a difficult question in some respects because i know from myself am too shy.  Coffee and chat sessions are pointless for me. I have even gone to the adult partnership board in my town as am used to what happening and find more parents etc go than adults with ASD so feedback be not accurate at all. Sorry just an opportunity to rant there I have said it there as when they were doing the audit i realised it was parents answering questions that wasn't the experience of adults but of children and so i think altered the answer...

I would really want more to be done to show support towards adults and older adults. It was nice to read a comment that one parent is teaching her son about his autism because one day he will have to advocate for himself.  As adults we have struggled with all of this and by chance if we are lucky drop on people who will help us as indivudals as such. 

sorry am just going off on one I think.  It is important to keep everyone who uses this website together to allow easy browsing for when they are finding out or have a specific question themselves. But please, rather than concentrate on 'services' for parents with children there is a lot out there, can we have more help please... Specially when one is newish to all this. Even there are more books for parents and children than for the adult with autism to learn about it for themeves. 

sorry it a niggle for me as was one of my first posts on here when i 'came back' last year.

Although the debate keeps coming up, am a bit puzzled by its resurrection at this point in time.

You only have to read many forum postings to realise it is seen as a 'problem page' or 'agony aunt' site. It isn't being used as a forum much of the time, though a small group, mostly adults on the spectrum try to engage in topical discussions.

What has struck me is a lack of parents engaging in topical discussions. They consistently come on with a problem - any answers? Sometimes other parents respond, sometimes the adults feel they should try to help if the question goes unanswered. But I don't see much sign of parents engaging in topical discussions any more. They used to.

It has been suggested in the past that the adults on the spectrum 'put off' parents using the site, and if the adults were syphoned off into a separate forum, more parents would use the site again. Let's face it NAS is a big parents' group, and there is resentment of adults on the spectrum using the site. Lets shove the adults somewhere out the way.....

But there isn't a shortage of parents coming on, its just that the parents don't seem to want a chatty discussion group anymore, and I'm not convinced it is because the adult auties put them off. Maybe you can demonstrate it is the case, but this has been raised before and the proof hasn't been forthcoming.

The other major groups coming on here are adults who cannot get a diagnosis, parents of children who cannot get a diagnosis or statemeting, adults and parents of adults where PIP assessments are letting people down, and serious incidents arising in schools. These aren't discussion forum topics. They are people who cannot get answers from the Help Line, or anywhere else, and they come to the forum, often in desperation seeking that help. And NAS does nothing about it - apart from suggesting they use the help line or the website

In my view what kills the forum is not whether the adults need to be shoved off somewhere else so the parents can have the forum all to themselves (not that that isn't my suspicion that bubbles away below the surface).

The fact remains, and NAS can prevaricate all it likes, whatever the reasons, the Help Line isn't providing resolution and desperate people come on here instead.

If you want a solution sort out the Help Line. Don't blame the forum, and dont play the guilt trip/blame culture on the adults with autism!

Thanks Asparagus and Trogluddite for kicking this off.

It would be interesting to know whether there are any other forums or communities that serve the needs of adults (late diagnosis or older). It's a while since we have researched other communities. It is an area we are keen to address you can read more hear about the Autism and Maturity Project here:

www.autism.org.uk/.../ageing.aspx

What we are keen to do as the NAS is to provide services where there are gaps and not try and replicate services provided elsewhere. So if there is a gap for online forums for this group we should consider ways to help.

Thanks for points abou pros and cons of separation or not

Bob