As many will know, the Autism Hub has been put on hiatus. Many will also know why but if you don’t the reason extends to cyberbullying between a minority of members and their misogynistic attitudes to others on the Hub. The Admin team of the Hub had no choice but to put the Hub on hiatus as I see it.
BUT. I hope this is a temporary hiatus. The world needs a place like the Autism Hub, a place which has transformed itself from its first incarnation when I built it of a blog aggregator of blogs that followed a neurodiversity creed into something much more than that. It became an ideal, a banner which stood in lots of peoples minds – both autistic, NT and other forms of ND – as a force for good if I might be so simplistic. In a web that was covered with material about how awful autism was, it was refreshing to read material that challenged that simplistic view. And whether the blog was written from a standpoint of pure autism advocacy or a standpoint of tackling the antivax arm of autism (and all the flavours in between), refreshing it was and for me refreshing it remained.
One highlight was seeing autistic people and their NT allies presenting material under the banner of the Hub at San Diego University. Thats when I realised how much the Hub had changed beyond my own simplistic view of what it was.
By that time of course I had given up ownership and control of the Hub so the credit for that achievement did not lie with me but with the two current admins. It was they who oversaw the transition of the Hub into a flagship of ideas and I was thrilled to see it happen.
However, more than the admins, the formation of the Hub is made up of its members and they more than anyone dictate what the Hub should be. Sadly this meant for the Hub that some members took advantage of this liberty and thought that meant that in an effort to carve out their own identity it gave them free reign to abuse other Hub members.
And so we’re in the situation we are now where the actions of a few have impacted on something that gave great benefit to many. That abuse has led to a situation where the Hub cannot be administrated effectively without the current Admins effectively becoming full time unpaid administrators. Something that it neither fair nor feasible.
I don’t have any firm and fast idea about what to change or how but I do know that for Hub members, this is – as it ever has been – YOUR hub, powered by you for no ones financial gain and for all of our intellectual and moral gain. To lose it because of the actions of a few people goes beyond a shame and verges on tragedy. Do you really want to leave something – or see this something die – because we cannot deal with rogue members? Now is the time for all of us who are members to have full, frank and open talks about the FUTURE of the Hub, not to lament its golden past. So please – fellow members – lets talk.
Left Brain Right Brain 
I think it would be preferable that, if there are a number of people blogging with intelligence on issues connected with autism, then they should combine and produce a single daily news and opinion site, to which they all contribute.
At present, there is nothing like this on the web, and I find that very surprising.
There needs to be something of real quality, with a differentiation between news, analysis and opinion. Also an editorial team with real ability to regulate quality and integrity.
“for no ones financial gain and for all of our intellectual and moral gain.”
That’s laughable.
As is “golden past.”
The Hub should have a one member. one vote on the inclusion/exclusion of blogs.
It should have democratically elected admins, subject to annual elections – again, one member, one vote. Their names should be publicly available, and they should respond to enquiries.
It should have a clear and unambiguous code of conduct – with a formal and fair procedure for dealing with ‘rogue members’.
It should have a clearly defined and enforced policy geared towards enabling a free and frank exchange of views.
No comments should be moderated/deleted without a proper explanation of the reasons.
It should seek to represent a fair and balanced picture of the Autism community. No one interest group should be allowed to gain the whip hand.
In the meantime, it should be REINSTATED IMMEDIATELY! It is completely unreasonable that one or two burnt-out, disgruntled admins can trash the whole project.
[sarcasm] Oh, that will surely make them running back to take up the thankless job! [/sarcasm]
Create your own hub. Preferably one that is not a copycat, and that those who wish to not be on will be removed.
As one of the few non Anglo-Saxon members of the Hub, I’ve been particularly disconcerted by the hiatus in its operations. We did not get to share (nor probably to understand) the debate among American hubbers — and we did not foresee what was coming.
For us the Hub has been an invaluable window on the neurodiversity community and on the neurodiversity idea(l)s: living in a place like Italy, in which even the word “neurodiversity” is virtually unknown, LB/RB and the Hub have been the only way we had to free ourselves from the “Autism is a tragedy” rhetoric that is administered to us by everyone around us, from teachers to therapists, to other parents of the Autism associations.
So, even if I understand that the Hub has become more than an aggregator, the basic aggregator functions were so precious for us that we are at a loss now, havong lost them.
And even if I understand the difficulties the Admin Team is facing, I believe that the basic aggregator functions could have been preserved. And I hope that at least the basic operations can be restored soon: without the voices of the Hub bloggers we feel really onely, down here.
My two (devalued euro)cents.
Some of the blogs I read were the on the Hub. I applied to the Hub a couple times in the past year, but I never got on. I suppose I could have been bothered by this, but I’m facebook and online friends with many of those who are on the hub, and I never found the lack of membership to the hub to be something to be bothered by. I didn’t use the hub, past the initial visits to it, because I google-followed so many of the hub’s blogs, and I placed them on my blogroll. I found new blogs of interest by using the blogrolls of the blogs I read.
I think that a group blog to rival AoA’s is not a bad idea, but I don’t think it is a necessary thing, and I think many of us have found that remaining solo bloggers or having only a handful of bloggers to a blog allows a cohesiveness of ideals to guide the enterprise (especially if legal risks can be spread to anyone running the blog).
If the Hub doesn’t come back, then rather than being frustrated about it or disappointed, the hub members should act independently to add to their blogrolls those they find appealing and work to create a network of blogs that are accessible through each other, with each person, doing as we already do, showing where our interests lie by including a person’s blog on our blogrolls.
Could someone explain what is going on? The Hub is one of the most useful sites about autism. I enjoy reading the perspectives of its different posters.
AoA’s group blog is not a hobby project that people run in their spare times. I’m sure it’s funded fairly well. I also don’t think you want to run infomercials like AoA does.
The Hub’s administrator job is a thankless nightmare – as it stands. Ergo, for the Hub to come back, the administrator’s job would need to change substantially. I think the idea that the Hub is a community needs to be given up on, and the Hub site would need to be explicit about this: the administrator does not handle personal grievances.
Now this is something of a test post.
I do know that I have been “persona non grata” before
I guess I have been associating with the pharisees and tax collectors now.
I am not a homophobe, I a not a misogynist.
I happen to think that there are more sides to any dispute than are ever apparent on the surface, and I will not be persuaded(or bullied if you want to construe it thus)to have to associate only with whom it is approved I should associate with.
You all miss the reality of politics, the reality of social psychology the whole way that persuasion and conversion works, you ain’t gonna get nowhere by sending folks to Coventry.
I don’t care I already live there.
I don’t necessarily think a donation or ad supported site with paid administration is a bad thing. It’s a thankless task, and it’s a real pity that interpersonal conflict caused such problems.
Kev,
All things come to an end. Last decade it was forums. Then it was blogs. And in 2-3 years it will be a new group of people with whatever the “new” is.
When you read only from those who support what you believe your not hearing what others are thinking. Some hubbers wrote extensively on vaccines and for many vaccines and what caused autism is irrelevant. Some bloggers wrote about their life, their thoughts, their families. If the blogger had younger children, why would person with an older family be interested.
In the end, whatever your thoughts are, the bottom line will be, advocating for yourself or advocating for what a family member needs.
So the forums of yesterdays became inactive because their can’t be unity in something that effects so many in so many different ways. The autism hub and the neurodiversity group failed in the way the forums failed. In the end it’s not who you know or who you hang out with online, it whats you need in real life.
2-3 years and it will be something new. This is only the transition period til the new becomes the rage, and the cycle repeats itself, because the internet can’t be real life ever.
Best wishes across the pond!
Now I truly have a headache! When is all this fighting within our community going to stop?? I don’t even know whats going on but I can guess its another fight within the cure vs non-cure aspect of it all. Why do we have to pick a side? Why can’t we look at both sides? Why have I been called a hypocrite for posting my beliefs on both aspects of it all? This is a tragedy. I disagree and agree with both sides and my a** hurts from sitting on the fence, and my ears hurt from the screaming on both sides of the yard.
I’m curious: what, outside of community, is the goal of the Hub? Is it political? Personal? Spiritual? Beyond having a positive outlook, are there things the Hub community wants to achieve?
AofA is clearly all about furthering a very specific agenda on which all participants are agreed… And that (plus, of course, funding to pay staff, etc.) gives them the ability to maintain a unified voice and build a following.
I can’t help but feel that the Hub, like the Democratic party, has a general point of view – but is too disparate within itself to focus on an agenda or become something more professional or wide reaching.
I’m a bit worried that open-minded, non-judgmental blogging about autism is a nice idea, but not particularly impactful (is that a word?). I can say from my own experience that moderation is not attractive to the media (for example) – no one wants to hear that I honestly don’t know what causes autism! CNN (and everyone else) loves a good fight.
Lisa Rudy
Learn more about my new book:
Get Out, Explore, Have Fun:
How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities
@Donna… well said.
“AofA is clearly all about furthering a very specific agenda on which all participants are agreed”
Lisa, what do you see as AoA’s very specific agenda? Handley says it is “to bring the US vaccine program to its knees.”
Lisa Jo asked:
While some sense of community, to some degree, may have been a side effect, and there has certainly been some evolution, I don’t think simple “community” was ever the goal of the Autism Hub. Soon after Kev created the original Hub of about a dozen blogs, we discussed the goal, and together penned a description:
“The Autism Hub is a central point for blogs about autism from autistic people, family members, and students/professionals.”
and mission statement of the Hub:
“The Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include: empowerment/advocacy, acceptance, and a positive outlook.”
for all to read.
In the sense that the Hub should have a goal of community, I would argue that the goal has been, and should be, to eventually create community between autistic and non-autistic people in society at large – countering things anti-autistic along the way (dehumanization, inequality, doom and gloom rhetoric, treatment quackery, etc.).
ANB – who am I to argue with JB Handley about Age of Autism?!
Lisa
Do’c, that’s exactly why the Hub is such an essential thing to have on the internet.
To counter places like Autism Speak that are all about making autism seem depressing and tragic instead of something to understand and work with. I love reading parents of autistic children who don’t talk about it like it’s hopeless and miserable and don’t believe in chelating or other such things that are a bit dangerous and quacky. It’s nice to see the perspectives of people on the spectrum, countering the stereotypes and assumptions, and the perspective of professionals who are not giving out messages of misery. I think the Hub is essential. Especially for parents who will listen to the shrill cries and racket of Jenny McCarthy and Autism Speaks. We kind of need this here, even as a soft alternative things don’t have to be that way voice.
I also can’t think of a reason for “open-minded, non-judgmental blogging” about a movement that wants to bring the US vaccine program to its knees. So we finally agree on something. ; -)
There are far too many times when my attitude towards the autism blogosphere is one of “a pox on all of your houses”.Neither side gets it right as far as I’m concerned.Just as the antivaxer types are never going to acknowledge someone on the spectrum,who is a genius at progamming,most of the ND/Hub bloggers are never going to write about the everyday experiences of having seizures,GI disease,bipolar disoder,or chronic infections existing alongside autism,and greatly impacting its severity.The same autistic who may be very lucid,and able to create a four-star gourmet meal from scratch,and discuss the minutae of Beatles bootlegs in detail,may the next day be barely verbal,unable to tell you their name,head banging,and having severe seizures,or a flare of acute GI disease.Such dramatic swings back and forth are a reality for many on the spectrum,myself and my sister included,and one you rarely read about at The Hub.
It’s no secret that AOA,Generation Rescue,and their fellow travellers in the blogosphere are not about autism at all,any more than they are about finding the real causes of their children’s problems.They are all about shutting down the vaccine industry,plain and simple.But it is just as dishonest to ONLY talk about the positives of being on the spectrum,as too many neurodiversity types have done for far too long.There needs to be some balance in both the blogosphere,and from neurodiversity at large,where the bad is stressed as much as the good.For every call for jobs or acceptance of those on the spectrum,there needs to be one for proper healthcare for those with bokth autism and medical problems.There needs to be more voices saying yes we are sick,but it isn’t the vaccines.
To that end,I have tried to start a blog myself,but nobody ever read it.I have had a lot of medical issues this year,things I have not had since I was a little kid have been coming back,and I have been fighting regression again.Not a dramatic one from a severe infection,like I had in 2007,but a gradual,more insidious one,so blogging is not a big priority right now.
I do see some signs that things are improving,though.Unlike the antivaxers,there are those in ND who are flexible,and willing to change,and grow.Some are starting to admit that autism is not all that positive,but far too many bloggers still push the strident old “diffference not a disability” line,that I would like to see go the way of the VHS tape.
If the hub were to start up again,I would like to see some more realism injected into it,but realism is not the same as woo or weepy sentimentality.
Even the temporary loss of hub is highly unfortunate. There absolutely does need to be something to counter the nonsense out there. The Autism Hub did a good job of this. I really… really want the hub to overcome this hurdle. It was a good idea back when it was founded and is still a good idea now.
I would like to see the hub members:
1. Appoint a set of 5-6 officers to run the hub.
2. Establish a code of conduct in regards to bullying. And apply it to all hub members.
3. Make it clear that regulating a blog’s comments is the owners job. They can address trolls and non-hub bullies as they see fit.
4. Allow the variety of article types to continue. This diversity strengthened us.
5. Keep the loose, overaching theme of neurodiversity.
6. As long as one keeps within appropriate guidelines for bullies, allow for academic and intellectual freedom.
I sympathize with the admin position, and recognize all of the symptoms I have seen in other groups. Sometimes people get past this; sometimes they don’t. I am not a member of the Hub but been a shadow visitor and have found a lot of useful stuff from it.
Will miss you…but also hope you regroup some way.
It’s not pretty is it, but when anyone can aggregate a set of blogs together there is not official “in” or “out” there is no exercising of control.
To me this current spate started out as what almost seemed like a division on nationalist lines along the 49th parallel with the supporters of Michelle Dawson making accusations against the supporters of Ari Neeman. I’d be tempted to say it was more like team rivalry than advocacy.
Then there was a fall out on what seems to male chauvinist piggery versus radical feminism, with anyone missing in action being assumed to be guilty as charged for saying nothing.
You can’t have a group of bloggers as disparate as those on the hub without having some major fault lines somewhere. There isn’t a 39 articles or a nicene creed to sign up for.
Some people for whatever reason seem to have a profound mistrust of other advocates and it gets nasty and factional.
There’s no right side to pick to ride out the storm either, as I posted on my “blog damned if you do, and damned if you don’t”
I guess what is needed is a basic code of civility between bloggers, but if it is ok to vilify people from Autism Speaks, (as I have done, I own up) and it is ok to vilify Jenny McCarthy, and that has been done with reference to her status as a porn model, nothing that really has any bearing on ideology. Then it seems by extension, it is alright to vilify each other in similar ways.
No it ain’t all right. It’s about time we all came clean and stopped the personal attacks, on whoever. People have made some grave mistakes, and grave misjudgments all around. Time to let the dust settle and start flying again.
Uh, could all the brilliant insightful bloggers PLEASE stop deciding to retire their blogs?
It’s rather sad.
I hate to see their voices silenced.
The Hub may be down at the moment but as long as there are marvellous posts like this one by Larry Arnold it reminds us that the Hub does not exist to present an ideology or a finished moral and ethical position. It came into being to bring public attention to the alternative to the the doom and gloom laden media coverage that was once the norm. It is still out there. But it is no longer the dominant theme.
We need the Hub back so that when people google autism they find these posts by Larry, Amanda, Bev, Michelle, the LBRB team etc. They will not find a party line. But they ought to find differences honestly and respectfully argued. As I understand it the most recent problems arose because some Hub members were disrespectful and bullying to other members.
Larry quite rightly raises this point in his comment above. Do we need published guidelines, moderators and admins to keep us all in line? Have we sung our songs of innocence or can we return the Hub to its original state?
From afar, the disputes that brought the Hub to its halt seem puny, believe me. I find it difficult to understand what is the difference between, say, Michelle Dawson and Ari Neeman. From my point of view they both help in fostering the rights of autistic people — and to spread the word that autism is not a tragedy, is not an enemy that kidnapped my son, etc.
For us it’s as basic as that. And we need the voices we could find on the Hub — and their diversity. As Mike says:
“the Hub does not exist to present an ideology or a finished moral and ethical position. It came into being to bring public attention to the alternative to the the doom and gloom laden media coverage that was once the norm.”
Outside the Anglo-Saxon world it is STILL the norm. So we can’t afford the Hub, in its original function, to be silenced.
Speaking as a person who moderates an autism blog, I can say that while it is very rewarding it can also suddenly become a very time-consuming activity. Hardest of all is figuring out how to “moderate” increasingly angry interactions among individuals who are smart, well informed, and well intentioned.
To be honest, it’s a whole lot easier when you’re dealing with “trolls” – you can just block their names. Honest but seriously heated disagreement is much, much tougher. Hard to know where to draw the line, what counts as “abusive” versus “straight from the chest?”
Lisa
All I know is that I now have a dearth of opinions from some of the best minds, emotions and humor of autism out there. I can’t go from a parent talking about a challenge of the week; to a news event that is important in one corner of the world; to piecee that will be insightful AND incite-ful in the same breath—all within a few mouse clicks. It’s the cacophony of ideas and positions that I miss and I/we/they need it back.
I feel for admins that have to referee escalating wars, it has to be an impossible position to be put in. I suppose it’s too late to ask the slings and arrows be set aside, for the sanity of all. I’m probably not alone to say that I completely missed the controversy, whatever it was. I’d hate to think that something so apparently transient could take down an icon of the autism internet.
Gresham’s law in action.
It sucks big time.
So how do we move forward without volunteer administrators doing a thankless unpaid job?
Blogrolls. Add everybody from the Hub whose company you *want* to keep, to your blogroll. Then people who start at your blog, or any one of the others, can navigate through the blogrolls to the others that they used to read on the Hub. (And maybe to some new ones that they never noticed before.)
Let’s try it. It just might work.
@ Phil – Good suggestion, and I would add that there are a couple of blogs with very extensive blogrolls just for this purpose.
http://counteringageofautism.blogspot.com/ (See profile page)
http://embracingchaos.stephanieallencrist.com/ (Also resources list)
I highly recommend them both.
To notice all this things and changes happening to the Hub means a lot to me. It feels like loosing a dear friend. There is no such thing like this Hub anywhere on the internet. I wonder how this will go on…
Has there been made a listing with the blogs to appear on the new Hub yet?
The Hub is back — and with a radical reduction in the number and diversity of blogs.
It is at least ironic that a place that should promote respect for diversity would limit its own diversity.
IMO, this new Hub is way poorer than the old one — and one that is of limited help to us out here. I can only hope its place can be taken by something else — and the sooner the better.
P. S. Joel Smith seems to have gone offline, too. Sad days are these — we feel a lot more lonely now.
Angelo M. Buongiovanni,
I noticed that there were much fewer blogs in the hub now too. There is a statement on the webpage about that
including–
“For those who write blogs (that used to be listed) which were not selected during this first round of post-hiatus review, please consider submitting your blog for early consideration in the next round of review (see the about page for more on how to send submissions).”
Angelo, if you give me your url, I will add you to the blog directory I started today (linked through my name).
Kwombles,
click on his name next to his comment–http://www.montag.it/theratrace/
Sullivan,
Should it go under parent blog, blog by autistic individual, or autism information?
Kwombles,
I can’t access the link from my office — but I’ll be glad to see it as soon as I get back home — if you wish to add me to a directory, mine is a parent’s blog.
My comments, though, were not so much directed to the exclusion of my blog from the Hub (I write in Italian, I write also on other subjects, so it’s not out of this world to drop me off): what I find disturbing is the reduction of the number and diversity of voices of the Hub.
I’m writing this comment as Kev, not as the owner of LBRB – Sullivan may well have different ideas than me as may the other writers.
Speaking as me and me alone, I want to please ask the current Admins to consider restoring the blogs that have been removed.
who are the admins now?
David, the current admins quite understandably wish to remain anonymous. Given the amount of crap Dave and HJ had to contend with I can certainly agree with their position.
I tried for the last two years to get a hub/portable going. It proved quite difficult, though I have left the site operational and do maintain the server code with patches. I was going to give it another year to see if there was any hope at all.
The URL isn’t ideal, I’ve been told in sometimes angry msgs, but such is life. It works and I’d consider a different domain if there was sufficient interest.
http://www.autisticplace.com/
I would polish the site, visually, if it had traffic. I nice banner or something. There’s no commercial aim, just the goal of linking and aggregating to information.
If anyone does want an RSS feed added to the Autistic Place aggregator, send me the URL for the feed (not the general link) and I’ll have it up within a day or two.
It takes me a minute or two to add things, so I’ll do what I can to be responsive. I work from home, so it’s not a problem to update the listings two or three times a week.
cheers, Kev… just wondered.
can certainly understand their position as well… i was shocked at what happened, to be honest…
glad it’s back.
“Speaking as me and me alone, I want to please ask the current Admins to consider restoring the blogs that have been removed.”
There is no reason to assume that any consideration of adding blogs that used to appear on the Autism Hub is not already taking place. (See the news/updates page; “Where’s My Blog”?) The review group is serious about their process, there are many autism blogs to consider, and there are only so many “volunteer” hours in a week.
There were 4 additions today.
I understand that this is old, but I just wanted you to know that that autism hub, by the very miracle of it’s existence has actually stopped me from committing suicide several times, because I actually felt like somebody understood, that somebody was listening. Now I go to these blogs which are like ghost towns, most of them. They all have messages on them, saying various things which a reader like me couldn’t understand. I guess nobody thought that anybody outside of that inner circle would be reading. I thought you were all about inclusion.
All I can say is that, can any of you see beyond your own personal agendas for about five seconds, and realize that people actually read these things that weren’t you or your activism buddies? That hub, and by extension the entire movement that sprung up around it was more then any fault lines or any cyber bullies could have ever been. That place brought together information that touched lives.
So now I go on these places and see a bunch of fancy explanations for why brilliant people can’t showcase their views, if they’ve posted at all in the past years. I understand of course, as a disabled person that sometimes challenges that get in the way, but there is no explanation for almost the entire autism blogosphere that isn’t anti-vax propaganda to be just gone. All I can remember from that fight, from what I as a mere reader could decipher, was a bunch polar opposite views bouncing off each other and some person thinking it was okay to assault people over the internet. Cyber bullying is awful, but isn’t the sharing of ideas, even ones that you didn’t agree with, kind of the entire point of a place like the hub used to be?
But then again, who cares? it’s not like anyones gong to read this.
Well, I read it, R, because it came up in my inbox. It probably was received by the others who had already commented as well. If others haven’t commented to you, it’s probably because it brings up some uncomfortable memories of a bad moment in time. I also read the initial post again, and all the other comments. There were some excellent comments.
I have no idea who you are, but will hazard to guess that you’re on the spectrum somewhere, and as such, have difficulty with changes. Yeah, it was a tough time, people lost friends (or wrote them off) because they had sided with the “other” party. I know I lost friends out of the deal, and it was painful. And yet, we move on. Changes happen, and you just have to get used to it, or continue to suffer the loss.
And the Hub isn’t lost, it’s still there, and we also have the Autism Blogs Directory, and Autismo. Those three aggregators have something for everyone, believe me. Just look them up, visit them, and find your old favorites and look for new favorites. Sometimes, change can be good, and even when it isn’t, it’s inevitable. I’m an old Aspie, so trust me when I tell you, you need to be able to adapt to changes to get along. Any time spent grieving for the past or what was, is time wasted.