Wednesday, May 5, 2010

autism hub: RIP???

I see that the website linking a collection of blogs written by hatemongers and/or desperate parents of relatively severe autistic children (Kristina Chew, Susan Senator and "CASDOK" belonging to this group) who have been exploited by this movement and engage in denial and reaction formation as to the state of their children, has taken a hiatus indefinitely. Could this mean the beginning of the end of the hub in particular and (wishful thinking) the neurodiversity movement in general? Socrates of the new republic blog has written about this and I will defer to this oversexed yet wise blogger who is far more knowledgeable than myself about the internal politics of the possibly defunct hub of which he was a member in good standing as to the explanations and the specifics. The most celebrated anti-neurodiversity blogger, John Best has given his take on the matter.

The neurodiversity movement started from modest beginnings going back to Jim Sinclair's ANI and Judith Singer's diatribes about how Asperger's should not be considered a disability. Thanks in part to the internet and the possible influence of Ari Ne'eman's family and the vulnerability of certain parents they have grown by leaps and bounds over the past 15 years or so. Could it be that they have gotten too big for their britches?

As the movement has flourished, they have actually become somewhat mainstream. They conned autism speaks into giving them half a million dollars using Laurent Mottron and Michelle Dawson as their front man/woman. They conned the Obama administration into appointing Ari Ne'eman to the national disability council though when the guys who wear the white hats fought back against the black hats, this appointment was held up. Then they turned around and conned Barack Obama and Kathleen Sebelieus into appointing him to the IACC. This was in spite of the fact that they lobbied against the combating autism act when it was being debated in congress which the IACC grew out of. The IACC has as its goals funding of scientific research with the intent of curing and preventing autism, goals that Ne'eman and the rest of his disciples have adamantly opposed.

However, one must remember the fall and decline of the Roman Empire. When neurodiversity grew by leaps and bounds and as more people joined, there was discord. Different persons had different takes. The personality clashes overrode the political agreement. The autism hub in large part by linking to these blogs contributed to the perverse message of the propagandists but with growth, there was lack of harmony. Perhaps that is what contributed to the demise of the hub, I really don't know. Again, I will defer to Socrates or perhaps another insider who might care to blog about it.

Of course the sad part is that the blogs are still there and this will make it harder for me to access the information I need to write about these people, but I will have to do my best. The hub was one of the first websites I would log onto after waking up in the morning after my orange juice and shower and a cursory read of the L.A. times. I had become an addict. Hopefully I won't go through withdrawal, but I will miss the hub with a certain nostalgia. Of course my guess it will come back with a different administrator other than Dave Seidel and my quasi neighbor Hollywood jaded. It makes me think of the song by the Who with the lyrics Meet the New Boss, same as the old boss. I suspect it will come back and nothing will change, but only time will tell.

More importantly, could these personality conflicts be the tip of an iceberg. To date there has been a relative dearth of coverage of the ND movement in the popular media. This could change on a dime given their success in conning one of the largest private sector autism charitable foundations as well as the federal government. It would be a twist in the knickers of most parents if they had heard of the neurodiversity movement, if they had seen the bullying and the hateful rhetoric of its adherents towards the parents of these children. As the ND movement grows, the hub's demise (whether temporary or permanent) might be chump change in the grand scheme of things. When persons who have given money to autism speaks hear about the things that Laurent, Morton and Michelle have said, they might boycott the walks in unison, depleting the treasury of AS who won't be able to give Geraldine another 600 grand plus in compensation for a given year. They might actually have to terminate Laurent's funding. Morton might get her funding terminated by the federal government and no longer be able to review articles for peer review. Michelle might have to beg Canada post to give her the old job she had back.

When people hear about what Ne'eman says, there will be a backlash of people writing their congressman and senators. They might even find out about Stephen Shore's closet anti-cure philosophy. neurodiversity might be forced out of the IACC or perhaps the IACC won't be reauthorized by congress when that comes up.

Or ND might sabotage itself. They might not even need to have ignorant and apathetic parents of these kids who want to help their kids fight back against these people. The personality conflicts might do it for them. This all might mean the beginning of the end of ND.

Of course I realize that the discontented child cries for toasted snow as the old Arab proverb goes, but a guy can dream, can't he?

39 comments:

Autismo said...

Sorry to piss on your parade, it's been taken over and and lives here now.

jonathan said...

Tread lightly, Socrates. Dave and HJ and Amanda might sue your ass.

SM69 said...

Wow, Interesting to read all these developments, it's like a small (tiny) world collapsing on itself. Interestingly, a smaller (still) version of this seems to have developed in the Biomed /DAN/Biomed side of autism. Geier and Geier, turning against others with their paper on Cobalt toxicity (MB12) and a hard hit back at them in return. Now all parents who have experienced adverse reaction to MB12 seems to speaking out more clearly for the first time ever with a little more critical sense. So there do all these mini revolutions lead us? Hopefully to a fairer and better place, though I have some doubts. Chaos will continue to reign until issues are sorted and they are many to deal with and it will still take time. Perhaps someone though will have the clarity to ask for clam and serenity when the issues we all face are in fact very similar and need our fullest energy and sanity.

The author said...

Pigs might fly as well.

Are you part of the inner Autism Speaks heirarchy that you speak with authority or are you making it up as you go along?

I do know there are academic departments who shun Autism Speaks funding because it compromises them, nuff said.

Kent Adams said...

Jonathan, you should do something about pointing out that Socrates and myself should deserve some credit for bucking the trend and suffering the bullying of the Hub, as former insiders. You've never acknowledged that but I think if you want to be fair you should. We three want what is best for autistic people, even if at times we wonder into areas that we later come to realize are not best for autistic people.

Autismo said...

Dear Mr Mitchell,

We have been unable to find an email address for you.

We are writing to ask if you would like to be considered for inclusion in the Autism Hub?

If so please contact us here autismoHub+admin@gmail.com

Warmest regards,

Autismo.

jonathan said...

No, I am not a part of autism speaks. I am not sure you are referring to in your post, author, unless you are talking about my statements of Laurent and Mottron and company and their association with autism speaks. Using the term "conned" is nicer than suggesting that Mottron was awarded the grant through autism speaks being unethical, claiming that they regarded autism as a disease to be cured and prevented and advertising this in their fundraisers and then supporting someone who is as antithetical to their stated goals to solicit fund raising as Mottron and his coauthors of various studies are. There can be no other explanation for his funding. I suspect the former rather than the latter because I do believe that the people who support autism speaks do have some good but misguided intentions and they are vulnerable people exploited by Mottron's dubious claims that his research can result in educational improvements for autistics, reduced unemployment and even improved parenting strategies as stated on the AS website given the rationale for his grant.

What academics refuse AS funding based on principle? Mottron is certainly not one of them. It is unlikely that your good pal SBC is one either, as he cheerfully accepted funding from the predecessor of AS, Cure autism Now when your other friend Matthew Belmonte worked in his group as a postdoctoral fellow?

lurker said...

I would have doubted that the hub or something like it would have stayed away permanently. I think what's going on now is reorganization by those who currently have the grip on power, including by those associated with the hub. I bet they're sorting out who among them are going along with their crafted strategies, which they need to sustain their lies on any level against our cogent backlash, and also may be marginalizing those who aren't going with the program enough in unsympathetically promoting their agenda with brutal manipulation. I don't think they still depend as much on spreading their message the way they had, now that they have such influence with Ne'eman and even others.

MJ said...

I have to wonder if this is an attempt to clean up the image of ND as a result of the movement attempting to go more mainstream. The Hub might have been a unifying point, but the opinions on it were a liability to the movement as a whole.

Foresam said...

Autismo,
I would like to join the Autism Hub. Please send me an application, bettwice33@juno.com

Walt said...

Yeah, you're absolutely right. The ND movement is FILLED with discord.
Unlike here.
Seriously, how many of John Best's absurdly childish insult comments have you approved? If that's what you want your web site to be about, fine. But it's a little silly if you then want to raise a point about the online behavior of others.

The author said...

The reason you will not find a reply to comments from Laurent Mottron, or SBC for that matter is that they are bound not so much by there funders, as by the rules of there own academic institutions to refrain from bringing them into disrepute by engaging in anything that lowers the standard of academic debate.

I am unfortunately bound by the same obligations to refrain from suggesting that my school either supports or does not support any particular viewpoint beyond what is acknowledged in there own publicity.

That is why you won't get anybody talking directly about there institutions funders.

If you want evidence of who AS does and does not support you will have to go to there records and draw your own conclusions from who is not there.

jonathan said...

Walt, a number of John Best's more over-the-top comments have been rejected here. Of course, the persons reading this site have no way of knowing what I have not approved by John Best.

As far as I know, no one has spoken out against, persons who were abusive to me on the internet. Ari Ne'eman has accepted donations from persons who have abused and libeled me for his organization.

I have publically stated before, and now I will say again for your benefit, I have never condoned or approved of a lot of John Best's behavior and tactics. However, I understand his contempt and anger towards the neurodiversity movement and I don't blame him one bit. You apparently have not read the comments here very carefully, I have, on occasion, urged Best to tone down his rhetoric. However, I realize it is hard for someone with a severely autistic child who can't even speak not to reach their breaking point when having to read the vermin of the vicious ND hatemongers who sully the internet daily with their rhetoric.

To borrow from "Joseph" you are comparing apples with hurricanes.

Roger Kulp said...

I was sent an article from

this website,but I can't find it on their site.It's a fairly accurate article,about how people with both autism,and other serious medical problems are not able to be tken seriously by most doctors.

A perception is forming among those with autism,family caregivers,and medical professionals who specialize in autism spectrum disorders (or ASD)
that the healthcare system as it is currently constructed far too often provides inadequate medical care for those on the autism spectrum.The tight-knit medical community specialized in treating those with ASD says delayed or denied healthcare no only compounds medical problems and
prolongs suffering, but it could also escalate the healthcare costs
associated with people on the autism spectrum.

"I have heard medical practitioners refer to us as 'autism patients,'
whether or not the reason for coming in to see a healthcare provider has anything to do with autism," says Paula C. Durbin-Westby, a member of the
board of directors for the Autistic Self Advocacy Network.


Yes ASAN.I have never heard of Ms. Durbi,but that blew me away.This seems to be a complete 180 from everything Ne'eman,and ASAN has said about autism in the last few years.

The article goes on to give a basicoutline of Margaret Bauman,and the LADDERS program,and we come to:

Even experienced medical professionals can easily allow ASD to mask medical symptoms, she says.

"Up to this point, people have perceived that aggression and self-injurious behavior is just part of autism,"says Bauman."Then[the patient with ASD]ends up at a psychiatrist and is on a pile of psychotropics or antidepressants. Because we have this interdisciplinary team, we've been
able to see that what we really have is a nonverbal person who has poor sensory processing, so they can't vocalize pain or discomfort very well.We go to great lengths to work these [patients] up for all kinds of medical issues."



ASAN,and LADDERS seem to be on the same page here.The article also says what I have about people with autism,and serious medical issues being neglected or abused by mainstream doctors,whoforce families to turn to quack treatment out of desperation.

If ASAN,and some people in the neurodiversaity movement have begun to see the error of their ways,maybe we should all call a truce for now.I know my own position has softened of late.

Noone could be happier than I am to see the antivaxers eating their own,in the post-Wakefield era, maybe it's because I had a DAN! doctor dump me because I had too many medical problems for him to treat,but he did find the multiple MTHFR mutations in me and my mother,as well as the folate/MB12 responsive anemia, something there is real science linking to autism,so yes SM69,there are those on the spectrum who really do need MB12,and can benefit from it,but giving it to everybody with an autism dignosis makes about as much sense as giving us all antiseizure meds.

Walt said...

Jonathan,

Of course I have no way of knowing exactly what comments of Best's you deemed unworthy of inclusion onto a comment page (although, having viewed his own site I can reasonably wager a guess as to their nature). That is really beside the point. It's not what you keep out but what you let in. You have decided to make editorial decisions as to what sort of commentary is acceptable or not on your blog. Clearly, you have decided that at least some of Best's infantile insults and taunting are appropriate for your site.
And that's fine. Where would the internet be without those two things?
But, having then allowed this level of discourse on your site, it's a bit much for you to turn around and complain about the civility of other people's sites.
And to cap it off, in your response to me in which you halfway excuse Best's online behavior, you refer to other unnamed human beings as "vermin."
"Vermin?" Really?
I challenge you to go back and read the line from your own post "the vermin of the vicious ND hatemongers who sully the internet daily with their rhetoric" and NOT see the irony staring back at you.

Jake Crosby said...

"autism hub: RIP???"

We can only hope...

Anonymous said...

Let's hope that group of blogs just disappear. They offer nothing but instructions on how to systematically make sure your kid has a joke of an education and ends up in a residential dump. I truly hope new parents of diagnosed children stay far away from blogs such as Senator's if they want their kids to have a chance at all.

jonathan said...

Walt I was not referring to them as vermins, only their hateful rhetoric as vermin, there is a difference. I try to avoid attacking them as people, though I will concede I have not always been perfect. But I will continue to dispute the hateful and malicious rhetoric of personswho say that people who want to help their kids are only trying to deliberately abort autistic fetuses and say that I and others who long for a cure are responsible for the murder of autistic children.

Joseph said...

What happened was that many of the members saw the Hub not only as an aggregator, but as a community. So if a different Hub author was trolling your blog or abusing you verbally, this was considered a Hub issue, requiring the involvement of the administrator (Dave), and ideally also requiring the support of other Hub bloggers.

I can see why that would be difficult to sustain, so the "community" dissolved.

Autismo Hub may not have that issue, because that's clearly "just an aggregator", but then that's also why traffic from Autismo is marginal.

Socrates said...

Perhaps it's time the Hub was put back up. Time for a clearly defined structure and membership. Time for it to become community property. Time for one member, one vote for the inclusion/exclusion of blogs. One member, one vote for all substantive issues surrounding it's running.

Just who the hell are Dave and hj to take it upon themselves to trash an organisation that's been running for years.

The author said...

Socrates you are a naughty boy.

Kent Adams said...

@ Joseph

"So if a different Hub author was trolling your blog or abusing you verbally, this was considered a Hub issue, requiring the involvement of the administrator (Dave), and ideally also requiring the support of other Hub bloggers."

Nice idea, but not the truth. In 2009 a hub blogger published my personal phone number and called me at home and hung up the phone on me. I brought it to Dave's attention and he dismissed it, Socrates is aware of this because he intervened. I thought the hub membership should know there was someone on the list cyberstalking and Seidel threatened me with expulsion if I did and claimed that publishing my personal details on the hub was not cyberstalking. So there was no community for me, just harassment.

Socrates said...

Kent's main offence has be to Call Out Dumbasses.

It makes him very unpopular. He's difficult to dismess as well - on the Spectrum, with a classicaly autistic child.

He has earned his place in the Forum.

btw...

Larry Arnold has just published a post stating the bleedin' obvious: Amanda isn't and never was a lfa.

Perhaps after his brave entry into the sea of bullshit that is the Amanda Baggs Controversy, those that set themselves up as our Leaders (Dave/HJ/Kev etc)will follow suit.

But know of course, the Elven Queen has change the debate. Functioning levels are just soo 20th Century.

This is a courageous move for Larry and he deserves our support in what will be the inevitable consequences for him.

Foresam said...

Walt,
Everything that is written on the Autism Hub of Insanity is dishonest. That makes them all fair game for any remarks that sane people care to make about their deception.

What you refer to as infantile, the rest of us call humor. I appreciate the fact that it's not funny to the mental cases towards whom it is directed.

Autismo said...

Sorry L.,

I missed you're comment. Surely you don't mean to suggest that Neurodiversity's Great and Wise Holy Fool is guilty of hypocrisy?

Walt said...

Best,

You say the "rest of us" but I suspect the truth is actually "no one else." Of course I might be wrong and someone (or everyone) else here on this site might find your commentary formula-- unsupported assertion followed by insult, repeat-- to be hilarious. If so, let them speak up here and I will stand corrected.

Foresam said...

Walt,
Are you trying to tell us that Neuroinsanity has something useful to say!!!

There are people who can deprogram brainwashed victims like you. Please seek help and come back when you can appreciate the manner in which you've been victimized by these psychopaths. I'm rooting for ya.

JediKnight2 said...

I must have knocked some sense into them.

JediKnight2 said...

It's not like I'm ever given credit for anything I do. I'm the one who's affected more than most of the people on the autistic spectrum, yet they could care less because in their minds, I'm SUPPOSED to be more like them 'culturally'.

Kent Adams said...

In case anyone is interested, here is the smoking gun about Amanda Baggs. This is the beginning of her transferring herself (diagnosed as schizophrenic) into an autistic. She wrote this in 1997 on a google board:

Many children (mostly autistic) at my school use those picture card things. Everything in the room is labeled with them, and they have schedule boards with velcro on them to attach the pictures. When they want to do something, they point to the picture (often with a lot of (coaxing). My school's pretty neat actually. It's special-ed for ages
7?-22. There are maybe forty students, of all kinds of problems (I'm in the high-functioning class, recovering from schizophrenia). I get to
work with one of the autistic girls once a week, and I really enjoy it. I want to do things like that professionally, eventually. Once I get out
of this school and back to college...

Link tinyurl.com/34hml94

I'm afraid that she has stolen from the developmental disability community with funds meant to serve our community, our children.

The author said...

Well what do you know, it seems I am going to get my 15 minutes of fame to debate with Laurent Mottron next month IRL ... That's going to be interesting .

It's a funny old world sometimes.

Foresam said...

Larry,
You better practice up on how to win your point when you won't be allowed to delete comments that are too tough for you to deal with.

The author said...

Well Laurent Mottron will be sandwiched between me and Dinah Murray, and I will kick off first.

I would not have been asked to this event were it not for the fact that scientists, including those funded by Autism Speaks did not think I have something important to say.

I'm not censoring you, it the people higher up, we illuminati, have to bow to our drakonian masters :)

Foresam said...

Larry,
You were invited because they know you will agree with their dishonesty regarding mercury and autism.

The rest of the discussion is merely misdirection.

Kent Adams said...

Jonathan,

I have a tip for you. Recently, Autistic Bitch from Hell, slipped up and identified herself as Meg Evans. See this link: http://groups.google.com/group/alt.support.autism/msg/83974c620835ebf2

Meg Evans is an attorney living in Ohio and serving on the board of directors for ASAN.

There are a couple of important aspects to this. Meg, as ABFH, has been giving what is called "astro-turfing" support on her blog for ASAN, creating an assumption that ASAN's support is broader than it is. This is considered widely unethical for charities to do.

The second important aspect to this is that ABFH is misrepresenting herself as an autistic person. If you look at ASAN's board of directors statements, they say "she was identified as autistic in childhood" but Meg, ABFH, has told me that a doctor mentioned it in the 1960's to her parents but she has no real diagnosis. Somehow, in Ohio, they were so far advanced in screening for autistic disorder many years before autistic disorder was even added to the DSM. ASAN is misrepresenting Ms. Evans and giving the impression she has a diagnosis when she does not, they are just relying on some conversation she alleges took place when she was a very young child. Mr. Ne'eman has turned down requests from autistic people, with official diagnosis, to serve on the board of directors before Meg Evans was appointed. This would seem to be contradictory to ASAN's own mission statement to empower and represent autistic people. He has by-passed autistic people in favor of non-autistic people with the flimsy evidence of an allege conversation that took place between doctor and parent long before autism was added as a diagnosis and in a doctors office far removed from academies that were only experimentally understanding what autism was is. This to me is highly dubious. She managed to raise two children, attended a very prestigious law school, Case Western, and suddenly found herself identifying with autism in 2004-2005, giving links to Aspergian beliefs, which as we know include a racist overtone in these beliefs, certainly not inclusive of those with autistic disorder or even common traits of Asperger's Syndrome.

Ms. Evans has stated in the past that those of us that go to support groups for our Asperger's Syndrome are somehow atypical of AS because we seek community and strength of belonging within a group of like minded and disorder folks. Here she lambasts against those of us that go to support groups: http://autisticbfh.tripod.com/support.html She has written on her blog that she thinks those of us that go to these support groups are not a good sample of people with AS because we are more "needy", certainly not representative of the completely independent diaspora of those with AS.

Ms. Evans, self diagnosed, should stop astro-turfing and ASAN should answer why they rejected autistic people with diagnosis from serving in favor of those with no diagnosis and the misrepresentation they are giving to the wider mainstream media as a result.

jonathan said...

interesting tip, Kent, however, your link does not seem to work when I try it.

Kent Adams said...

See if this link works: http://alturl.com/q5s8

jonathan said...

yes, thanks that link, seems to work. I read the post by Bob Badour, interesting.

Anonymous said...

Casdok, Chew, Senator.....all parents who have placed their kids in homes and are dumb enough to follow the other Hub bloggers who could give a crap about their kids. These blogger mothers appear to care more about publicizing themselves than anything else. Attention seekers is all they are.