Wednesday, March 31, 2010

An Open Letter to ASAN Regarding Its Honesty and Integrity

To the Autistic Self Advocacy Network (ASAN):

I would like to request clarification on the matter of the Cat in a Dog's World blog and its affiliation to an ASAN Chapter Director. In particular, I would like to know the following:

  1. Is ASAN aware that ASAN leaders are blogging pseudonymously in support of ASAN and its policies?
  2. Does ASAN condone or encourage this practice?
  3. If ASAN does not condone or encourage this practice, would ASAN be willing to speak out publicly against this practice and remind its leaders that they are expected to conduct themselves with honesty, openness and integrity at all times?

This is not a small matter for ASAN. Undisclosed pseudonymous blogging in support of ASAN and its policies reflects poorly on both the individual and the organization. This practice, to put it quite simply, is dishonest. I am willing to accept that the original intentions were simply a question of poor judgment, but the indications are that the individual involved wishes to continue this practice even after being made aware of its unethical nature. Furthermore, ASAN's silence on the matter makes it unclear if the organization itself understands the consequences of these actions.

I look forward to ASAN's reply regarding these questions and concerns.


Alan Griswold


jypsy said...

I could answer, from what I've learned in the past couple of days when I voiced these same concerns about ethics & accountability with ASAN, but I won't. I am not ASAN and you are not asking me. Thank you for asking, and for sharing my concerns. I hope you get a reply (an honest, open & thorough reply) and I hope you find it much less offensive than the one(s) I got.

Someone else, who is also not ASAN, tried unsuccessfully to comment here, you'll find his comment over here

s0_wespeakforourselves said...

I suppose the dishonesty would be a kind of astroturfing. But aren't the very people who are leaders in an organisation like ASAN also likely to have personal opinions. Any given opinion may or may not coincide with ASAN positions, but it is likely that most would more or less align with ASAN's.

I would expect that people who are members of ASAN would have opinions. I would also expect that someone in an activist group or self-advocacy group would be likely to express those opinions.

What would be dishonest would be troll-like tactics (even if not trolling), for example posing as someone opposed to a group which one participates in for the purpose of discrediting the group or the real position. I don't see that.

I think, as with all political posts, one should acknowledge who one is (xyr on-line identity). That said, even multiple identities, if not used for deceptive purposes would be acceptable.

I suppose if the advocacy position were being debated as directly relevant to the advocacy group itself, then perhaps that's a different issue. But that doesn't preclude individuals from having individual views.

- s0

Anonymous said...

Cat in a Dog's World is not an anonymous blog.

Anonymous said...

I'm not involved with ASAN; I'm just an interested observer in online Autistic affairs, and have been for many years. I wanted to fill in some of the details, since I witnessed it all, and am aware of much of the background.

Cat in a Dog's World is a popular blog among the Autistic community which deals with disability rights issues. Sarah is well known in online circles, and has always been associated with the blog. She does not blog anonymously. Some time after she began blogging, she became involved with ASAN in a leadership capacity. It was well known, and never a secret, that the ASAN leader known as Sarah, (in connection with her last name), was the same Sarah blogging at Cat in a Dog's World. Recently, someone, who is well-known in Autistic circles, and sympathetic to Autistic concerns, published Sarah's full name in connection with the blog. Sarah asked that person to please delete the posting. The reason she gave was that she worried that associating her last name with the blog would associate her family with the blog. Although she personally stands behind the material in her blog, she's aware that some of the content is controversial. She felt that family members, who were searching for jobs, might suffer from the association, since employers routinely perform web-searches on prospective employees. (In her connection with ASAN, her last name is clearly divulged, and it is no secret that she is autistic). It was clear that Sarah wasn't demanding complicity in some sort of secrecy cover-up, and that she wasn't asking for anything beyond one favor from a sympathetic party. After the request was made, it appears that the intent was misinterpreted, with a subsequent breakdown in communication and goodwill. Many of the publicly posted online communications have now been deleted. And the story appears to have been blown out of proportion. An objective assessment of the situation reveals that the situation was not as serious as people are now making it out to be.

Alan Griswold said...

I do not understand the comment from Anonymous (10:38). I'm willing to be corrected, but my understanding is that a reader of the Cat in a Dog's World blog would not have an expectation that the author is actually an ASAN Chapter Director (and apparently the author wants to keep it that way). As such, it is not okay for the author to write in support of ASAN, ASAN personnel or ASAN policies. Full disclosure is required here - anything else would be misleading.

Furthermore, the real question here is ASAN's stance towards its leaders posting under other, undisclosed guises. ASAN's position towards this practice seems to be ambiguous, or at the very least, unclarified. I would like for ASAN to clarify its position.

Jannalou said...

The second Anon has given one side of the story but not the full story; the misinterpretation occurred specifically because of the involvement of ASAN and the history of ASAN with the person who made the post in question. Things escalated because nobody who was directly involved was taking time to think before posting responses, and the messages wound up being deleted.

As I said many times in the discussion about the situation, if the information is public, the posts don't need to be deleted. If the information is private, then it should be deleted. As it now stands, there was no point in deleting the posts in question, since there has now been a post made to with the exact same details in it (first and last name of the individual, link to the blog in question). This post can't be deleted, as usenet is basically "out there" forever.

Jannalou said...


I think you have tackled the issue right at its meat, and that is the point that was trying to be put through over the course of the discussion about the request and the posts. Unfortunately, the people who thought the post should be deleted did not seem to understand the points being raised (basically the same as your points here), and turned to scare tactics in order to get the post deleted. (There has been a statement made that the scare tactics were merely comments made in the heat of the moment, but as I said elsewhere, people were not taking the time to think before they posted, and that is what resulted in the unfortunate deletion of several posts.)

I want to be fair to everyone involved, but it seems that there is much backstory (that I am not altogether clear on as yet) in which ASAN plays a rather unsavoury role. While I am sympathetic to the ASAN leader involved in this situation on a personal level, the involvement of ASAN leadership (to my understanding, on a peripheral level) is undesirable.

Anonymous said...

I am the same person who posted both anonymous comments, and yes Jannalou, there is more background to this story. While it's debatable how much of that background is related to this issue, there clearly is a "history" between ASAN and the individual of whom the request was made by Sarah. I would not agree that it constitutes another "side." It's just further background which may or may not be relevant, and doing it justice in writing would be beyond the scope of a comment such as this.

Addressing Alan: I've been an occasional reader of the Cat in a Dog's World blog, and I don't recall ever reading anything there about ASAN. On the other hand, I do recall much material on the subject of Autistic rights, disability rights, woman's rights, etc., as well as more general observations of the type normally seen in a blog.

My understanding is that Sarah was not intent on deceiving her readers into believing that she was someone other than the Sarah named on ASAN's websites; she just wanted to shield her family from her blog, as explained in my previous comment.

Clay said...

I've looked over past blog posts, (for this year, anyway), and see no evidence that this was ever a "gossip blog" before this.

Opinions are like assholes, everybody's got one.

People may think they know what happened, they may be swayed by old friendships and loyalties, but there are only two people who know the whole story.

The rest is only internet chatter and gossip.

Alan Griswold said...

Responding to Anonymous:

I am a fairly regular reader of the Cat in a Dog's World blog (which by the way I generally enjoy and would like to see continue - albeit with full disclosure). This episode started over comments posted to a blog entry specifically in support of Ari Ne'eman and specifically mentioning (in glowing terms) his work through ASAN. Under those circumstances, a reader needs to be informed that the blog author is in fact an ASAN Chapter Director. It makes a difference!

I accept that there was no original intent to deceive. But after the problem became known, there was also no attempt to fully disclose. And this is where I get confused about ASAN's policy. I would think that after this incident happened, ASAN would want to make clear to its leadership and to the outside world that if ASAN leaders wish to make statements in support of ASAN, ASAN personnel or ASAN policy, then those leaders need to fully disclose who they are. But so far, ASAN has remained disturbingly silent on this issue. ASAN does not seem to realize it has a serious integrity problem here.

Bob Badour said...
This comment has been removed by a blog administrator.
Bob Badour said...

Fact: Sarah has chosen to delete or make inaccessible any inculpatory material instead of modifying it to properly identify herself--choosing censorship over disclosure.

Clay said...

Fact: Bob Badour is a braying jackass who really needs to get a life! MYOB!

Socrates said...

And I'd just like to say (non-anonymously)...

wtf is going on?

Y'all wanna keep your eyes on the prize and take this bickering of teh interwebs.

I've yet to meet anyone who can communicate with Michelle in anything resembling a conventional manner.

Any attempt to engage with her in any modality other than as a subservient proselyte is futile.

She is aggressive, confrontational, takes pedantry to hypernovic extremes - and appears to be pathologically paranoid.

And it's about time she and her supporters had a taste of their own medicine...

Alison Cummins said...


None of that means she's wrong. Even if she were all of those things (which she is not) she is also very smart.

And none of that means that ASAN leaders should be behaving in ways that leave them open to the appearance of sock-puppetry.

Socrates said...

I agree, she is indeed very intelligent and very good at her job.

But the talents and skills that make a good academic are woefully inadequate in the political arena.

Autism advocacy is at it's heart a political movement based on an emotional/spiritual foundation of the sanctity of human life - not an offshoot nor fruiting body of "Science".

The razor sharp instruments of Academia are quickly dulled by the battle-scarred hides of the Advocates.

jypsy said...

This discussion/debate should be about the points raised, not the personalities involved. It really doesn't matter who the pseudonymous blog owner(s) is/are and/or which of us raises the ethical concerns we see with that. The questions are:

1. Is ASAN aware that ASAN leaders are blogging pseudonymously in support of ASAN and its policies?
2. Does ASAN condone or encourage this practice?
3. If ASAN does not condone or encourage this practice, would ASAN be willing to speak out publicly against this practice and remind its leaders that they are expected to conduct themselves with honesty, openness and integrity at all times?

Socrates said...

The personalities of the people involved are the issue when the Great Debate/One-Woman's-War degenerates in to pointless muckslinging exercise which is damaging to all of our interests.

AutSqueek's politicos must by jumping with joy.

Y'all just do their dirty work for them.

Clay said...

I took down the ASAN logo from my blog while I was uncertain who was in the wrong.

It's back up.

I commented here earlier that only two people know exactly what happened. I left out that one of them is always misinterpreting what has been said.

I proved that on the Countering AoA blog that dealt with Ari's nomination. Both Michelle and jypsy are well aware of this. You just don't get to say, "in other words", and then turn whatever someone else says inside out and upside down.

That doesn't work for me.

The author said...

Well I am known to comment under various pseudonymia, but most people are aware of who I am, and my full name appears on my blog.

I have also been a board member and am currently a council member of the National Autistic Society in the UK.

That does not mean that what I say represents the NAS. Indeed it doesn't as that is against the terms of the NAS and the board for it's councillors and trustees, as corporate opinions are expressed by the publicity people who are paid to do that.

In the meantime individual trustees and councillors have a variety of sometimes mutually exclusive individual opinions, and thus it is in any organisation that has a governing board, there is concensus opinion which is different from the individuals who contribute to the concensus.

At times I have been openly critical of the NAS too, as is my right as an individual member of that organisation to question policy.

I don't really see what the problem is here and I have no idea what astroturfing is, other than some abominable US practice where an artificial surface is preferred to natural grass, which is everything which is wrong with sport in my opinion when it is no longer played on grass. (oh the atavist I am)

The author said...

And as for St Michelle, I will give her praise when it is due (and I do) and criticism when it is due (and I do) and both are deserving in somewhat equal measure as she is severely skewing the disability rights pitch with her off piste false characterisations of people who espouse the social model of disability and thus alienating potential allies who are as much pro ethics and autism rights as she is.

jypsy said...


Please be fair. I asked you (2 or 3 times) what you were saying and your reply was "There's a reason why people use analogies, in this case, spelling it out wouldn't be diplomatic. Mine was an apt analogy, but not all are."

I never commented there on what you said, I only asked what you meant and you refused to tell me. I get that "I only say what I mean, and I only mean what I say." but when the analogy is not understood, and you won't explain it, your meaning is totally lost.

I made no assumption there of what you were saying because I did not know what you were saying.

I did not, however, misunderstand your recent comments to me. Of course you weren't referring to me -- I was trying to point out that you were needlessly dragging other people into the conversation and I was trying to keep the focus on the point at hand. What I didn't understand was how you followed a comment "I'm sure X regrets....and wishes.." with "I can't really speak for X.." It looked to me like you *were* speaking for X when you informed me you were *sure* they "regretted" and "wished" stuff.

Please (everyone) hold *me* accountable for what *I* say.a

Jannalou said...

I agree with jypsy. Stick to the questions at hand.

If you want to talk specifically about Michelle, you have your own blogs (I just read Socrates' latest blog post) and there's always TMoB if you want to try to "get into it" with her.

Bob Badour said...
This comment has been removed by a blog administrator.
Anonymous said...

still the same person here who made the other anonymous comments.

@Alan: yes, I haven't read CiaDW recently, and I believe you when you say that she did post an open letter about Ari. Considering that this is something new - she is not in the habit of making statements about ASAN on her blog, which I can attest to - I have no reason to believe that this could not or would not have been resolved internally. While the ethical issues being raised are valid, it did not need to come to this. And when you consider this in the greater scheme, it's not as serious as everyone is making it out to be.

Funny how everything is interpreted as some official statement from ASAN, but when Sarah closes her blog, (as she has done), it's not seen as a statement from ASAN that they acknowledge the problem. It seems they're damned, whatever they do. Under the circumstances, their silence is understandable. I don't imagine any statement from them would satisfy certain people. Personally, I believe that this particular issue that's gotten everyone flamed up is rather insignificant in the greater scheme of things. In a few years, it won't matter what statement ASAN has or hasn't made.

The author said...

The question is very much whether my comments would subject the NAS to liability, I and other councillors have been reminded about this before. If I do disclose my connection with them in such a context it needs to be clear that I am expressing my opinions and not those of the body with whom I share a governing, not a representative role unless I merely repeating a previously agreed statement.

That is the difference, governance is one thing, and representation another, and if the public fail to realise that, then it is the public who are at fault.

In any event the dispute here surely is not with the corporate body of ASAN, but one of it's board, and that is a difference.

As for Ari, this in no way can bring discredit on him, as his role will not be to represent ASAN on the Disability Council, but the Disability Council's perspective in general as I understand it.

There is as I have stated before a difference in roles between advisory bodies, representative bodies and advisory bodies as with the case of John Elder Robison and Autism Squeaks.

The author said...

And it is all a storm in a teacup in any event because regardless of anyones connection with anything, the measure of truth is in what they say, affiliation neither makes it correct nor incorrect.

Take the Profumo scandal, whilst it was fairly obvious "that he would say that wouldn't he". The propensity of an individual to deny there guilt and the incentive to do so would have failed to establish there guilt were they in fact innocent.

Bob Badour said...


You post misinformation from a position of hiding. How much credence do you expect anyone to lend you?

You earlier made a statement about Sarah in defense of her that directly contradicts her own stated position on the matter. You stated her relationship to ASAN had been publicly disclosed, and she stated it had not.

I agree nothing had to come to this. However, the very methods by which Sarah sought to resolve the problem internally made all this inevitable. She had more than one option by which she could safely proselytize for Ari while disclosing her connection to ASAN. Instead of opting to disclose, she chose to censor.

Nobody has interpreted Sarah's letter or her censorship as anything official from ASAN. However, ASAN's continued silence on the matter speaks volumes.

The author,

The issue of liability matters to NAS. I am sure it matters to ASAN too. However, that is not the issue here, and it matters not one whit to the public. When the public are harmed, they do not care what organizations do to avoid the consequences of their actions or inactions. The public cares about the harm.

It is unethical for an office-holder within an organization to proselytize for the organization or for its leadership while disguised as a third party.

Why should autistics not receive the same protections afforded... Canadians let's say:

Clay said...

I'm going to post here essentially the same as I posted on the New Republic:

I formerly was a fan and sycophant of Michelle. (bleat)

At the very beginning of this, I stated that I had been a supporter of Michelle's before ASAN even existed, and hadn't changed my mind. Then she decided to block every "member/supporter/leader" of ASAN on twitter in a petulant and pedantic interpretation of "anywhere in the vicinity" of ASAN.

That was irrational. It was an insult. He wouldn't like me bringing it up, but Charles was very hurt by this. He lost a friend (and who the Hell hasn't?) over this. When I protested, on TMoB, I was declared irrelevant, as what I said didn't suit her preferences.

I've "taken on" several well-known autistics, because of what I considered as unfounded attacks on her. It wasn't appreciated, I guess, and "irrelevant" in her current crusade. No more.

I'm basically against all this internet chatter of the subject, it seems more like rubbing salt in wounds, but maybe all these things need to be said.

Bob Badour said...


I fail to see how what you wrote is even remotely relevant to the current issue.

Are you not still fighting the last war?

The author said...

Let me put it a different way. This blog post appears to be an attack on ASAN.

However the question I am going to put is this, incase there is a hidden agenda here against Ari Neeman, and attempt at guilt by association intended to further destabilise his position vis a vis the disability council appointment he has yet to be confirmed in.

Given a choice say between Michael John Carley, Temple Grandin, and Ari Neeman for that position, who would you prefer?

Of those three I consider Ari, for all his youth, and his faults, best qualified.

Clay said...
This comment has been removed by the author.
Clay said...

@ jypsy - With all respect, I'll attempt to answer your questions.

The expression "beating a dead horse" is really a well-known one. It's practically a "trademark" for Jerry Newport, who used it frequently.

I used it to refer to the many times M has brought the subject up on TMoB, has "spread the pain around" by attempting to apply pressure by whatever means available. It has become tiresome.

When you asked me about my saying "I'm sure X regrets...", I clarified that to mean, "I believe that X regrets." (And I'm pretty sure I'm right about that.) ;-)

Alan Griswold said...

There seems to be a lot of discussion here not relevant to the original post. To be perfectly honest, I couldn't care less about all that.

What I do care about is ASAN's integrity. The irony is that I'm prone to being supportive of ASAN - I've appreciated some of its past efforts and I would generally like to see it succeed in becoming a voice in support of some of the many diverse interests of autistic individuals. That's why it is important that ASAN be known as an above board organization.

You know, my three questions are actually softball questions. They are easily answered, and can be done so in a way that puts ASAN in good stead and on firm footing going forward. I'm not sure why ASAN seems not to want to step up to the plate and hit it out of the park.

jypsy said...

With all due respect, that was not the term you used.

"When you asked me about my saying "I'm sure X regrets...", I clarified that to mean, "I believe that X regrets." (And I'm pretty sure I'm right about that.) ;-)"

I have no idea what you are referring to. I never asked and, consequently, you never clarified anything previously, because ASAN officially shut down any discussion of the issues being discussed here in this blog post, immediately before that comment of yours. I was forbidden from asking you about it there and if someone has contacted you privately, it was not me.

Bob Badour said...

The author,

It is not an attack on ASAN; it is a demand on ASAN. Constituents have a right to make demands on those who would represent them.

Whether I consider Ari an appropriate choice will depend largely on how he responds to the demand (and whether he had any past involvement in unethical behaviour that hasn't yet come to light.)


"Then how come I never heard of you before this?"

What sort of arrogance makes you think you have heard of every autistic? Do you suffer a delusion whereby you think you know every voter too?

"and some people are one."

It is redundant both to demonstrate it and to state it.

While I don't set the terms of debate, I certainly have as much right as anyone to point out weak, irrelevant sophistries offered by those who would prefer to distract than to resolve. Your sophistry reflects poorly on you.

My name is Bob Badour. I have never presented myself as a Sam or as anyone else, and I don't participate anywhere with anonymity.

The facts speak for themselves and demand a reply from ASAN.

Clay said...

@ Alan - Back in January, I posted an article about Ari, and added a supportive commentary:

Should I have said somewhere in that comment that I was a member of the ASAN List, to avoid any confusion, or accusation of misrepresentation?

On, I've signed 600 petitions, or added my name to their causes. Should I have stipulated that I am an autistic, to avoid being considered "guilty" of something?

I have sent no letter to the Senate regarding Ari's nomination, but mostly because I lacked the time OR inclination to do so. But if I had, what would I have been "guilty" of?

@ jypsy -
"With all due respect, that was not the term you used."

The term I used was "flogging", meaning the same thing as "beating".

"I have no idea what you are referring to. I never asked and, consequently, you never clarified anything previously, because ASAN officially shut down any discussion of the issues being discussed here in this blog post, immediately before that comment of yours. I was forbidden from asking you about it there and if someone has contacted you privately, it was not me."

I had said, "At least she didn't go on and on for months about it."
You misunderstood that to mean you. I replied that I wasn't referring to you, I was actually referring to M.

I don't know what you mean by "anyone contacting me privately", but will agree that you didn't.
Does that clear up any misunderstanding?

Bob Badour said...

Yeah, what Alan said!

"What I do care about is ASAN's integrity. The irony is that I'm prone to being supportive of ASAN"

Clay said...

@ Bob Badour - Speaking only for myself, you don't get to make any demands, and we don't need you as a "constituent". I've been around the autistic community for 10+ years, and as I've never heard of you, you're a nobody. You're a totally unquantified entity, as much as any anonymous poster.

Bob Badour said...


This time I think your sophistry speaks for itself. I will leave it to anybody reading to judge what it says about your character.

Unless you hold some office or seek to advocate for autistics or to represent autistics, you have no constituents, and I am pleased not to be a constituent of yours.

jypsy said...

With apologies to Alan (If I was allowed to discuss this on ASAN's list I would.)

Clay, you said
"but you're whipping that horse to death." (a live, not dead horse)
You didn't mean "give up" and/or "accept things" by that (you insist) so what were you saying?

""At least she didn't go on and on for months about it."
You misunderstood that to mean you. I replied that I wasn't referring to you,"

Allow me to repeat my earlier comment here:
"I did not, however, misunderstand your recent comments to me. Of course you weren't referring to me -- I was trying to point out that you were needlessly dragging other people into the conversation and I was trying to keep the focus on the point at hand."

"I don't know what you mean by "anyone contacting me privately", but will agree that you didn't."

I mean, you just told a tale -
"When you asked me about my saying "I'm sure X regrets...", I clarified that to mean, "I believe that X regrets." (And I'm pretty sure I'm right about that.) ;-)"
- that never happened. Where, before the statement I just quoted from here", did you clarify? It didn't happen on the list because I wasn't allowed to continue that conversation. It didn't happen privately, we've both just confirmed that. Where did my asking and your clarifying happen?

Clay said...

@ jypsy - The analogy of the horse doesn't really depend on whether or not he's alive or dead. At one point, I said that the horse was "ignoring" it. In either case, the whipping of it is an exercise in futility.

I certainly didn't mean to "tell a tale". When you asked me, I amended my statement "I'm sure X regrets" to mean "I believe that X regrets", though I may not have used that exact wording. I just tried to laboriously check what I had said, but found that Yahoo Groups is presently down for a scheduled outage. My apologies for any misunderstandings caused.

jypsy said...

"When you asked me, I amended my statement "I'm sure X regrets" to mean "I believe that X regrets", though I may not have used that exact wording. I just tried to laboriously check what I had said, but found that Yahoo Groups is presently down for a scheduled outage."

So you're telling me that
a)I asked you there (on the ASAN list) or
b)that you went back, just now (after my "8:02 AM" comment here) and edited your March 30th post on ASAN's list?

As to "an exercise in futility." -- what did you mean in saying that if not that she should "give up" and/or "accept things". You were/are so offended that it was interpreted that way.

Clay said...

@ jypsy - I assure you that I did not "go back and edit" my comment there, and I don't believe that's possible. One can only delete a message, after it's posted, to my knowledge.

I never said or implied that she should "give up", but there are other ways of dealing with things other than acting like a demented banshee, intent on destruction.

jypsy said...

I've been "around the autistic community" even longer than you and not only have I "heard of" Bob, I've met him more than once. He doesn't need me to "qualify" him any more than Michelle needs me to "defend" her.

jypsy said...

Then you're saying I asked you on the list and you "amended my statement "I'm sure X regrets" to mean "I believe that X regrets", though I may not have used that exact wording." on the list?

The author said...

Bob, no organisation is perfect and never can be.

Clay, I know who Bob is, just because you do not does not make him any less valid a commentator than you.

I am concerned that this dispute is playing into the hands of our enemies and I think there is less dispute as to who they are.

I have read my Machiavelli, and my Hobbes, I have been involved with the sordid world of politics for a long time. There is a right place for internal disputes and a wrong place.

What have we to lose if our enemies block Ari's appointment, think on that.

Clay said...

@ jypsy - Just got access to the post:

You said:
I did not "go on and on for months about" anything. I saw no regret expressed for anything said to me.

And I answered:
"See how EASILY misunderstandings occur among our lot? ;-)
I wasn't referring to you. I can't really speak for Sarah, but it seemed to me that's where she was."

That is equivalent to "I believe that X regrets..."
Further, I believe that would have prompted S to reply, if the thread hadn't just been shut down minutes before I posted that.
(I hadn't seen that yet, when I posted it.)

Clay said...

@ The Author -
"Clay, I know who Bob is, just because you do not does not make him any less valid a commentator than you."

I'll believe both you and jypsy. But that doesn't mean he has any right to demand anything. His opinion that he does, still counts for nothing.

And I'll agree with you that this discussion is destructive to our goals. Refer back to my first comment here.

jypsy said...

So, Clay, I never asked did I? You kept saying you clarified your statement when I asked you about it.

The very first thing I said about it I said here, this morning when I said:
"What I didn't understand was how you followed a comment "I'm sure X regrets....and wishes.." with "I can't really speak for X.." It looked to me like you *were* speaking for X when you informed me you were *sure* they "regretted" and "wished" stuff."

You gave no indication (to me) in that post that you were correcting or clarifying your earlier post. Like I said, I saw you speaking for someone in one post then claiming you couldn't really do it in the next (though you just had) and was confused. Perhaps in the same way you kept calling my statement "I saw no regret expressed for anything said to me." a 'question' (something I has "asked")

I'm very easily Googleable is someone felt they wanted to write to express regrets. ASAN leadership wrote me just 10 days ago seeking, and getting, information from me, they have my email.

Bob Badour said...


By your logic, autistics have no right to demand "Nothing about us without us" or ethical treatment or anything else for that matter. I reject that on principle.

The author,

I agree with respect to perfection. Perfection is a direction and not a destination. Even though our institutions will never reach perfection, history has shown failure to keep our institutions on the right course leads to great harm.

Institutions grow and evolve. On the right course, they improve. On the wrong course, they falter or worse they turn on people. Sometimes the process is messy and ugly. However, the process must happen and must happen in public view.

Ethics serve a purpose, and there are important reasons why institutions codify them as the present events highlight so well. Perhaps more than any other group, autistics need very clear guidelines, rules and codes of ethics for our institutions.

Absent any clear guidelines, I believe Sarah made a perfectly honest and perfectly autistic mistake. Without the necessary guidance, she then compounded that mistake beyond all reason.

ASAN is a very new institution. This is only the first of many crises it will face if it is to become an enduring and effective institution for autistic advocacy.

If Ari engages in, condones or fails to condemn unethical behaviour, we have more to lose by his appointment than we have to gain. If his modus operandi is to deceive the public and to silence criticism, he is unfit for any appointment. A cult of personality serves nobody but the leader.

Is he seeking an appointment in the public service to serve us? Or are we to serve him?

ASAN can put this to rest quickly and easily. As Alan already noted, his questions are softball questions.

The author said...

This getting to appear as if it is a fight between a Canadian gang of Dawsonistas vs a Yankee gang of Asanites.

Flogging a dead horse does have another possible meaning in British English, that is to sell one, (possibly for petfood)

If criticism of ASAN is in order, then so is criticism of Michelle Dawson who deludedly believes herself to be more perfect than she is, thus creating a huge obstacle to discourse and co-operation.

As for ASAN, would we want to the rather sinisterly named GRASP, to be taking this appointment instead?

There are actually quite sound reasons for some people to be anonymous in the blog world, as in the real world they lose there jobs over it.

Whether or not that is the case in the case in question is not particularly relevant, as blogging is in effect an extention of journalism, whereby it is long established practice to adopt a byline in sympathy with the contents of ones "column"

I mean just who is this "old moore" making all those predictions in his almanac? no wonder he is pseudonymous :)

Clay said...

The author said:
"This getting to appear as if it is a fight between a Canadian gang of Dawsonistas vs a Yankee gang of Asanites."

Close, but it seems that there's at least one Canadian who is now a former Dawsonista. I happen to agree with her reasons for switching. This was poorly handled, in many ways.

Bob Badour said...

The author,

I suppose, if one looks at people and personalities instead of substantive issues, it would get to appear that way.

Criticism of Michelle abounds. I suggest you can find any number of other venues to criticize her. In fact, she, herself, provides one at TMoB.

I am aware of the reasons people use pseudonyms. No ASAN director at either the national/international or chapter/affiliate level remains anonymous or pseudonymous. These directors have more than one way they can proselytize for ASAN/Ari while preserving pseudonymity at other sites and disclosing their relationship.

It is also a long established journalistic tradition to disclose any potentially perceived conflicts of interest.

mollyisfree said...

I really don't understand the reason for "Bob Badour's" repetition of the user's full name. It is clear that Cat in a Dog's World did not want her name posted. She asked that it be removed. (Michelle had it up by mistake and went back into her open blog and cleared her entire comment just to be sure it was gone.)

If someone expresses a clear intent to remove the name, why?? put it back up? That's just plain malicious and serves no useful purpose. It is hateful.

It really doesn't appear that Cat in a Dog's World is more than a local organizer in ASAN. (Maybe not, but Cat in a Dog's World would be the one to clarify that.) But it doesn't really matter as far as the topic of the "Open Letter" is concerned because her position is very clear and very open by virtue of the Cat in a Dog's World blog.

If someone; anyone; wanted to know the relationship between Cat in a Dog's World and ASAN, that person would do the obvious: They would read her blog. There is nothing duplicitous about that.

Still, the particular affiliation of Cat in a Dog's World with ASAN is no reason for publicly stalking Sarah. That is malicious and mean-spirited for the sake of being malicious and mean spirited.

Clay said...

mollyisfree said:
"I really don't understand the reason for "Bob Badour's" repetition of the user's full name."

Exactly, this was one of the reasons I was so angry with him.

"That is malicious and mean-spirited for the sake of being malicious and mean spirited."

And the other reason was that I thought he was this "surreptitious sam" character who had sounded exactly like him. I can be wrong sometimes, but in my opinion, both of them are low-lifes.

Alan Griswold said...

I agree with mollyisfree's sentiment about the use here of the full name of the Cat in a Dog's World author. In fact, Mr. Badour's comment put me in a very awkward position - I do not like to censor comments on this blog, but the use of that person's full name struck me as particularly gratuitous and unnecessary. I'm still not sure I did the right thing in letting it stand.

Let me remind everyone, once again, that the subject of the original post is ASAN and ASAN's policy. That subject can be discussed maturely without needless reference to personalities and personality conflicts.

Jannalou said...

I'll let Bob speak to his motives in stating the full name of the blog author in question.

I still haven't seen any kind of response to the questions raised in this post. Does ASAN not care about policy and perception?

s0_wespeakforourselves said...

(quoting Bob Badour:

Fact: During the discussion of her request to delete the comment, seemingly out of nowhere with no specific provocation, Sarah accused Michelle of harassment.

Fact: When Michelle predictably reacted by withdrawing in fear deleting all mention of Sarah or Cat in a Dog's World, Sarah expressed delight in the outcome.

Sarah asked that the name be deleted and did nothing more than react when it didn't happen immediately. It was taken down and "fact" Sarah naturally was grateful this happened.

I don't find any of this difficult to understand. Sadly, neither does Bob Badour, as the entire purpose of the post appears to be a personal attack.

Yes, the question is "why??"

Clay said...

Jannalou said:

"I still haven't seen any kind of response to the questions raised in this post."

I tried to answer that in my comment where I discussed my post about "An Article about Ari." My commentary was favorable to him. Should I have stipulated that I am a member of the ASAN List? What difference does it make, and who gives a rat's patootie?

"Does ASAN not care about policy and perception?"

I'm sure ASAN is aware of the situation, but feels it is their right to set their own policy, and
rightfully disregards any demands for explanation. Anything they say would only leave them open for further misinterpretation, because everyone has opinions, whether or not they are informed opinions.

All of this is only gossip.

Bob Badour said...

Sarah's full name is public knowledge. She has it published on ASAN's website. I used her name in reference to her office at ASAN UCLA, and I fail to see how any objection to doing so is legitimate.

Jannalou said...

Clay, you aren't (to my knowledge) a leader within ASAN. As such, you have nothing to disclose. The question has to do with ASAN leaders promoting ASAN without disclosing their connection to ASAN. Which isn't a big deal if they are using their real names and you can find those names on the web site, but is a big deal if they are posting anonymously (or pseudo-anonymously).

Bob, The problem is that Sarah didn't want her full name associated with her personal blog, and you completely buggered that up with your comment here and your post on ASA.

Jannalou said...

Oh, also, gossip would primarily be speculating. I have seen some speculation, but mostly just confusion and questions and some attempts to get the facts (that are public knowledge) straight. The confusion can't be sorted out without someone who actually knows what's going on coming and explaining things. I am not seeing how that would make things worse.

Bob Badour said...

No, Jannalou, Sarah buggered it up when she wrote an article on her blog proselytizing for ASAN and its national leadership. From that moment forward, the link between her blog and her name and her office at ASAN became a matter of public interest.

Bob Badour said...

Sometimes things seem to converge. I wrote a response, Autism: Respect Long Overdue, to a Huffington Post article, Autism: Time for Civility. My response references Alan's Open Letter here.

Clay said...

@ Bob Badour - What, you just wanted more witnesses to your assholity of publishing the blogger's full name?

A pox on you, pisspot!

Bob Badour said...

Once again, Clay, your sophistry speaks for itself.

Clay said...

@ Bob Badour - It's not a claim I ever made, punk!

Bob Badour said...

With my apologies to Alan for cluttering this thread even more, someone took exception to my "perfectly autistic mistake" remark. Since I don't have a livejournal account, I will respond to the criticism here where I made the remark in the 1st place.

I agree it would be wrong to infantalize, condescend or patronize. It would be wrong not to hold an autistic accountable for his or her actions.

However, I have held Sarah and ASAN to account, and I disagree that what I said infantalizes, condescends or patronizes.

A blind person won't wave back, and a deaf person won't turn and acknowledge you when you call their name. Ordinarily, we find such behaviour rude, but we make allowances for the blind and the deaf.

A deaf person might disrupt a meeting by making a loud noise and doing nothing immediately to stop it. Perhaps an audible alarm on a PDA, for example. The deaf person might even disrupt a couple meetings.

I would call that a perfectly deaf mistake, and I would make some allowance for it. However, at some point, I would expect the deaf person to take whatever extraordinary measures are needed to prevent it from happening again.

If I refused to make any allowance and just banned the deaf person from any future meetings after the 1st or 2nd disruption, I would make the meetings inaccessible to the deaf and would prevent the deaf from participating.

Autistics--especially younger autistics--have difficulty seeing things from different perspectives. It's entirely possible Sarah just hasn't seen things from our perspectives, yet. I was in my 30's before I could take dual perspective at all, really.

I am not ready to conclude 'intentional deceit' on the part of Sarah for failing to see the need to disclose--just as I would not be ready to conclude 'intentional disruption' on the part of the deaf person for failing to hear the alarm. I disagree that the specific disability makes autistics foolish or corrupt.

As far as institutions go, ASAN is all new and shiny. It hasn't had time yet to flesh things out, and it will need to flesh a lot of things out. Because it is an organization of, by and for autistics, it will need to take extraordinary measures to prevent 'perfectly autistic mistakes'.

Thus far, I don't see ASAN taking any measures except hiding, which saddens me.

Clay said...

BB said:
"However, I have held Sarah and ASAN to account,"

What "saddens" me is that some fool thinks he's in a position to judge either. Lots of Aspies have such unfounded arrogance.

Jannalou said...

Clay, I think we all get it by now: you don't like Bob.

However, I do think that in a democracy everyone is allowed to judge the people who we have elected to represent us. Now, anyone who doesn't care enough to actually vote, they don't get to complain. But anyone who simply takes leadership without an election, well... anyone they claim to represent should be allowed to speak their mind and criticize them at any time.

In other words, a lobby group claims to speak for a minority. Anyone who is in that minority should feel free to raise concerns about that representation at any time.

Sarah said...
This comment has been removed by the author.
Alan Griswold said...


Thanks for taking the time to comment here. I know this last week has not been a pleasant experience for you, and I realize not everyone has been polite to you, including in the discussion here on this blog, and for that I apologize.

Although I'm glad that you recognize the difficulties raised by your original post in support of Mr. Ne'eman and that you have taken some steps to alleviate those difficulties, I would still ask that you reconsider the wisdom of continuing forward with in essence two online personalities. For one, confusing and difficult situations - like the one you just experienced - could continue to arise in the future. But just as importantly, my belief is that you will be far more effective as an integrated whole. My experience with your writing is that you are articulate and thoughtful, and I think that by being simply and openly yourself, you can become a positive influence for both ASAN and the autistic community at large.

And to return to the point of my open letter to ASAN, whatever steps you yourself may have taken to address your personal responsibility, they do not address ASAN's stance as an organization on this issue. I have been getting the impression that ASAN does not see your incident as a big deal - an approach that would certainly not reflect well on ASAN. And I know there are others who are concerned that ASAN is too often willing to place political expediency above ethical behavior. I would prefer to hear from ASAN myself, and this is why I have asked it to clarify its policy. So far, ASAN has made the choice not to do so. Maybe you can use your influence within ASAN to help the organization change its mind.

farmwifetwo said...

I seem to have missed the story, but I will address the "letter" issue.

Last week a Conservative MP in Canada got called to the "carpet" because someone was posting letters to the editor in her riding about how wonderful she was.

Who wrote them is unknown. The name on them was the MP's maiden name.

It is not illegal... it is unprofessional and undermines the writer and the organization they represent. And as Ari's nomination has been put on hold... damage has been done.

I don't think Ari is the best person in this case. There are too many "politics" and he doesn't seem to be able to address them in "autism-land" so I'd have issues that he can address them within a large committee.

But it's just my opinion and since I don't live in the USA... It doesn't count in the end.

Jannalou said...

Actually, it was the MP's staff and family who were writing the letters. One of the staff members signed using her married name (she uses her maiden name professionally) (I could have the last name thing backwards).

I don't know if Ari is the right person for the job either, and I have reservations for the way ASAN is conducting itself (or not) at the moment. But hey, I'm Canadian and not autistic, so it only marginally affects me.

Julian said...

Autistics--especially younger autistics--have difficulty seeing things from different perspectives.

Really? You think that this is a problem specific to autistic people? Seriously?

I'm not saying this to mock you. I guess I'm just genuinely surprised that someone could believe this, given all the social drama and flamewars I've seen conducted online by non-autistic people, for what seemed to be very similar reasons. If non-autistics had that much more of this elusive quantity of "understanding how their behaviour is viewed by others," I'd think the world would be a much more peaceful place. In fact, one of the reasons I'm having so much trouble understanding what exactly is going on here is because it's so similar to so many community dramas I've seen instigated and carried on by non-autistic people, with all the alliances and taking sides and crap. So much for ideas of autistic specialness in the matter of this stuff, I guess.

In any case, it seems rather "aspie supremacist" to ask the autistic community in general to take sides on an issue in which not all of us are even capable of understanding the social politics and layers of if-you-defend-that-person-you-can't-be-my-friend involved. I didn't understand this stuff in elementary school and I don't understand it any better as an adult.

jypsy said...

How much of the public discussion surrounding this (like here, here, (and the ones in between), here, here and a bunch here) would exist if we had been allowed to discuss this privately on ASAN's (private) "discussion" list I wonder...
(ASAN's only official word there, the day before this blog post: "We're closing this thread. No more on this topic please.")

Bob Badour said...


Thank you for showing the courage to come here and share your perspective. I appreciate that. I really do.

Thank you, too, for taking steps to rectify the disclosure problem.

I don't think anyone would contend that the steps you have taken are inadequate. Quite the contrary, my concern is they go overboard.

You were sufficiently moved by Ari and by ASAN's message to create a chapter. That shows a lot of initiative and is very commendable. In fact, I commend you for it. Thank you!

Everyone expects you to support and to promote ASAN and its leadership. In fact, even if you had minor reservations about Ari, people will expect you to promote Ari's appointment to the National Council on Disability due to the benefits it would give ASAN and your chapter.

And there's the rub. The public expects to have the information needed to evaluate your credibility. We like to judge for ourselves.

When a mother brags up her son, we like to know it's his mother because mothers have a different perspective on their sons than the rest of the world. If she hides that tidbit of information and we later find out, we feel tricked, cheated or used. Likewise for insiders in political groups.

I don't believe anyone has any objection to you promoting Ari or ASAN. We expect you to. We would find it strange if you did not.

We only ever asked that you disclose your relationship to ASAN when you do. I, for one, would be much happier if you added one tidbit of information to disclose than if you deleted lots of useful content.

It's possible to disclose without breaking pseudonymity, and it's possible to present disclosure in a positive light. You could even take a lesson from Victor Kiam: "I liked ASAN so much, I started a chapter!"

Bob Badour said...


Yes, it is a problem specific to autistics. Sometimes, NTs are self-absorbed, defensive or grinding an axe where they ignore or deny each other's perspectives. The disability I refer to is entirely different. NTs have an inherent ability to consider other people's perspectives--even when they choose not to use it.

I was in my 30's before I could take dual perspective at all. While I get better at it with time, I am far from good at it. My nephews were better at seeing other people's perspectives at 6 or 7 years old than I am today approaching 45. I watched them express insights as young children that I didn't pick up on until well into adulthood.

Call it "theory of mind" if you like or something else if you don't, but it is a very real disability for a significant number of autistics. Autistic self-advocacy groups can not exclude autistics with difficulties in this area any more than they can exclude autistics who don't recognize faces or who have no interest in Star Trek.

If you look at Sarah's comment above, she shows no awareness of the disclosure issue and interprets the issue as an embargo on any promotion of ASAN or its leaders.

I don't know what help or guidance ASAN has given Sarah on the matter, if any. I can only see that whatever help or guidance was given failed to change her mental model--as have several attempts by myself and others.

At the same time, I am confident if someone recommended a mechanic to Sarah and she took a car to the mechanic for what turned out to be an expensive repair, she would feel tricked or cheated if she later found out the recommendation came from the mechanic's mother. If she doesn't drive, replace "mechanic" with "plumber" or some other expense she might have.

I don't understand sides either. The only side I really have is my own. However, I will speak up if I see someone doing something that harms another person or other people.

Bob Badour said...


The more I look into this issue, the more I notice ASAN prefers secrecy and has the habit of cutting off any dialog.

One of ASAN's national directors privately declared me an enemy and cut off any dialog because I raised questions and made suggestions that would have obviated this entire debacle.

If the issue had been resolved on ASAN's private list, I would never have even heard of it. I reject secrecy and would never subscribe to a private list.

Before this whole thing started, I considered ASAN a terrific group doing great things for autistics and Ari a tremendous asset to the autistic community. I found his appointment to the NCD heartening. It saddens me to say: The more I have looked into this issue and the more I have interacted with ASAN, the more ASAN appears like a cult of personality and Ari unworthy of my trust, the public trust or any trust.

Clay said...

@ Bad Bob - Are you a Glenn Beck aficionado? 'Cause you sound just like him!

Sarah said...
This comment has been removed by the author.
Bob Badour said...

"I also think that any analogy which compares the situation to one where money is changing hands is inherently flawed."


"I acknowledge that the post supporting Ari was a mistake given my position"

"I am aware of the disclosure issue"

Then why didn't you say that the first time? Why say the post was a mistake instead of it was a mistake not to disclose?

"So I don't see how this analogy holds up."

I think the analogy holds up just fine.

If the hypothetical mother reacted by saying: "Well, I'll just never talk about my son again," I would conclude she was being melodramatic and manipulative. I'm trying to give you the benefit of the doubt.

Bob Badour said...

P.S. I want to add that whether Sarah has difficulty seeing other perspectives isn't even the point. The point is many autistics do, and if ASAN is to succeed at making an enduring autistic institution, ASAN has to accommodate those autistics.

I think it reflects poorly on ASAN to abandon Sarah here to defend herself when it ASAN needs to step up and take care of business.

Socrates said...

Are any of you actually ASAN members? After all, if you want to change things you're not going to do it by screeching from the sidelines.

Sarah said...
This comment has been removed by the author.
Sarah said...

Sarah said...
This comment has been removed by the author.
jypsy said...

IMHO, I think direction on what you should or shouldn't be doing, in relation to your blog and ASAN, should be coming from ASAN, not commenters here or elsewhere.

Sarah said...
This comment has been removed by the author.
Socrates said...

No, you're right. You can't win. There aim is to destroy ASAN.

Bob Badour said...


I owe you an apology. This isn't about you. Alan's original post is not about you. More than anyone, I posted things that might cause you to think this is about you. For that, I am sorry.

I apologize to everyone else too.

Events preceding Alan's letter and leading up to Alan's letter were about you and about other people too. Those events caused Alan to raise his questions, but the questions he raised are not about you.

I only enumerated the facts that seemed to lead up to Alan's questions because anonymous individual(s) showed up here posting lies and contradictions. I am sure they are good and loyal friends of you and/or ASAN; however, they were writing whatever they found expedient with no regard whatsoever for what actually happened. I stuck a stake in the ground to keep the discussion from wandering too far.

I tried to include all the relevant facts, and I think I succeeded. I tried not to include any irrelevant facts, and while I am sure I included some, I think I did "not too bad". I apologize for any I did include.

You urge me to take what you write at face value. You will understand me better if you realize I already do that. If anything, I read too literally. I don't read between the lines, and I don't write there either.

I did not reply to your comment to prove you wrong, or to embarrass you, or to force you to do anything. I am sorry if I gave you that impression. I replied to your comment out of genuine concern for your understanding of the issue so that it can inform your decisions now and in the future.

Out of that same concern, I will say I re-framed your perspective in the mechanic analogy to that of the public in the disclosure issue. In the disclosure issue, you were in the place of the mother--the one recommending. The mother received no money either.

While I do not often read your blog, I have found it useful in the past. I think it is a valuable resource. Even if you decide to stop adding to it, I hope you keep it online. I would feel sad if you removed it or made it "members only".

If you do add to it, expect the traffic to grow exponentially for a while. Even if it does not grow, 200 people times 365 days is significant exposure every year it stays up.

Don't worry about satisfying me. Regarding the events that led up to Alan's questions, I cannot say I am happy with the outcome, but I am satisfied. I fully understand that I took something away from you--your pseudonymity. It was the last thing I wanted to do--really a last resort. I would have preferred you give it away or do what was necessary to keep it ethically. That didn't happen, and you paid a price. I am satisfied that you settled the account in full with that price.

I seem to recall you are a student, and looking at my watch, I see it is exam season. I think your boyfriend is right. I suggest you leave this whole situation aside for a while, relax, and focus on your studies.

Bob Badour said...


No, I am not an ASAN member, and Ari is not an AutismSpeaks member. I think we both disagree with you about changing things.

I cannot remember whether I ever donated money to ASAN. I might have. If my financial situation were different, I can say I would have made several donations to ASAN for sure.

Given my limited means, I generally prefer to spend my money directly where I think it can do the most good. I have donated money to at least 2 causes first drawn to my attention by ASAN.

In any case, I disagree that I have to earn the right to demand ethical behaviour from anyone.

Sarah said...
This comment has been removed by the author.
Clay said...

Bob Badour said:

I apologize to everyone else too.

I'm glad to accept your apology, Bob, and I'm sure that Sarah would even more graciously accept it, once she's able to climb down from the wall.

She just said what I was thinking while reading your apologia, that if you now agree that it was wrong for you to publish her full name, it would be nice if you deleted that comment or two where you did.

If you did that, man, I would shake hands with you.

Sarah said...
This comment has been removed by the author.
Bob Badour said...

Because this is Alan's blog, he ultimately has full editorial control so he can do whatever he sees fit.

I think the facts need to remain where they are, and I have no means to edit them. If Alan can change Sarah's last name to the letter P, I certainly have no objection to that. That way when someone googles Sarah's full name, they won't immediately land here where the events are spelled out so bluntly.

In any case, her pseudonymity is gone because her name remains connected to her blog on usenet where it is archived and indexed by google groups.

The thread seemed to go in the direction it did because I found it necessary to enumerate the facts and because I did not accurately predict your perspective on the matter. I just figured, since your pseudonymity was gone in any case, no reason remained to censor myself.

Retracting an accusation of harassment after the accused already deleted scores of messages is specious. Taking away your pseudonymity gave me no pleasure. It was clear you were using your pseudonymity to justify and to rationalize horrible behaviour harmful to others, and you could not be trusted with it anymore.

If anyone advised you to make the harassment accusation, they advised you poorly. If you came up with it on your own, hopefully you won't repeat that mistake.

Sarah said...
This comment has been removed by the author.
Clay said...

Bad Bob said:
"I think the facts need to remain where they are, and I have no means to edit them."

I think we've established that your thinking is shit. And as for editing, shall we take you as a liar or a complete ignoranus? I could delete any and every one of my posts here, and so can can anyone else, because there's a garbage can icon next to the date stamp of every post you make.

Did you not know that? Everyone understands the value of a gesture, and deleting those couple posts would be a validation that you really had no malicious intent by posting her full name.

If you don't have the decency to do it, I ask Mr Griswold to do it for you. Just as you judge others' actions, many of us believe that "malicious" was your intent.

Alan Griswold said...

The only thing I can do is delete a comment (I have no ability to edit its contents). I will delete Bob's comment if he requests. If he wants an edited version to appear, he will need to post that himself (but it will not appear in the same time sequence as the original).

Bob Badour said...


Autism gives you no license to harm people. If you cannot respond in a timely manner to undo the harm, I can only suggest you learn to disengage before you do anything harmful.

You did not accuse any single person of online harassment. You accused everyone involved--including Michelle and especially Michelle because her comment on your blog was the spark that got things going and because much of the discussion happened on her comment list.


I am aware of the delete icon. I thought my explanation was simple and clear. The facts need to remain where they are--at least until ASAN speaks to them and answers Alan's questions.


If you are willing, I ask that the facts remain where they are until ASAN speaks to those facts--either here or on their public website.

Bob Badour said...

I want to repeat: This is not about Sarah.

Obviously, there are things that ASAN Chapter Directors can say but only in their own name disclaiming that they speak for ASAN.

Obviously, there are things that ASAN Chapter Directors can say requiring public disclosure of their relationship to ASAN.

I expect there are things that require both disclosure and disclaimer.

As jypsy mentioned recently, ultimately, it is up to ASAN to provide their Chapter Directors, like Sarah, clear guidance on what requires disclaimer and what requires disclosure. I find it shameful that ASAN continues to leave their Chapter Directors hanging in the wind on these important issues and the public scratching our heads over apparent ethical lapses.

Quite frankly, I find that ASAN does not make reasonable and suitable accommodations for a disability I share with one of their disabled Chapter Directors.

Clay said...

Bob Badour said...

I want to repeat: This is not about Sarah.

Right. It's about you, setting yourself up as some sort of Judge to tell us what your "findings" are. Being as you're a nobody and all, you don't get to decide what needs to be done.

You were being malicious when you put her full name there, and you are still being malicious. And pigheaded. And full of yourself! Your arrogance is astounding.

Bob Badour said...

Once again, Clay, the base level of your rhetoric speaks for itself and reflects more on you than anybody else.

Sarah said...
This comment has been removed by the author.
Bob Badour said...
This comment has been removed by a blog administrator.
Bob Badour said...

For anyone interested, I represent that I am the individual living at the following address:

Civic Address;
Bob Badour
38883 Western Rd - Rte 2
Rosebank, PEI, Canada

Mailing Address:
Bob Badour
38883 Western Rd - Rte 2
RR 1
Alberton, PE, CA, C0B 1B0

Bob Badour said...

This whole thing is about ASAN--not about Sarah and not about me.

Please, let's return the focus to what is important.

almandite said...

"This whole thing is about ASAN--not about Sarah and not about me."

Your comments contradict themselves. You make this very much about Sarah. Further, you have blown things way, way out of proportion. See the earlier (VERY earlier) comments on this thread for a reasoned description of events. Sarah has stated that no legal action was threatened--as the one accused of making the threat, I'd imagine she'd know better than you.

"I do not address this to Sarah Pripas; she does not welcome my correspondence.

I note a change in tone in Sarah's recent comment. It appears to re-draft history in support of a frivolous legal allegation of harassment, and I choose to govern myself accordingly."

It does no such thing. It attempts to explain her frustration with and experience of the situation, which is intensely personal to her, as it should be. Perhaps you should ask her directly if there has been a change in tone, if that concerns you, before you begin spewing legalese, redefining the situation, and being an incredible hypocrite and bully by re-framing the discussion in such a way that you--you!--come off as the victim! The distortions of fact here are incredible. You like the word sophistry, but it cannot be applied more aptly than in this instance. Bravo, sir.

"I do not want her to express any opinion about any decision I may rightfully make, as her apparent allegation makes any reasoned reply impossible. I find her behavior threatening and harassing."

The irony is sweet.

"The facts, as I listed them on April 1, 2010, are true. I did not address them to Sarah, and I have never asked for her reply."

You fail to understand: the facts are ABOUT her. That makes this her business. If the facts are intended in a defamatory manner, as you have given every indication they are, then she has every right to respond accordingly. That's not threatening or harassment. That's self defense.

"The facts, as listed on April 1, 2010, have been posted in public for several days. Most of the witnesses--including Sarah Pripas--have already seen the statements and have had opportunity to challenge their veracity here. I find it noteworthy that all witnesses have chosen not to do so."

A false statement. They have been challenged, discussed, explained, and argued over for 107 comments. You have repeatedly been offered explanations. Similarly, your points have been acknowledged and steps have been taken to address them. That the steps are insufficient in your view is a cause for further discussion, not this chicanery.

"I have the right to state truth even if the truth reflects poorly on someone."

You do not have the right to twist the facts so that they reflect poorly on someone. Which is what, intentionally or not, you did. You did this by inserting your interpretation into your list of "facts", rendering the list biased and not objective and strongly suggesting a certain reading. Sarah has the right to object to that. When she has, you have dismissed her, chastised her, and otherwise attempted to censor here--as seen in your latest comments--just as you accuse her of doing!

"Sarah's most recent comment exactly describes the above activity then calls my word use an "accusation" and a "personal attack". My statement was truthful."

Your "facts" were accusative, whether they were intended to be or not. Many personal attacks have occurred. I suggest you try to take Sarah's perspective about this for a moment, in order to understand why she might feel attacked. As your latest comment is a pretty clear accusation, which are generally considered "attacks" in the internet world, that shouldn't be hard to do.

Jesus. If it's not about her, and not about you, then stop talking about either! Talk about ASAN, as you purported to be interested in doing.

Stephanie Lynn Keil said...

I am not a member of ASAN and probably never will be. This recent drama certainly isn't the only thing about them I find unethical and it only gives me more incentive not to support them.

I am almost to the point where I feel I just shouldn't take ASAN seriously at all: they have proven nothing to me. In fact, I have been harassed, multiple times, by ASAN supporters.

ASAN has a tendency to make itself sound much more important and powerful than it really is and that all high-functioning autistic people support them. In reality, few people outside of this close-knit online internet community seem to have heard of them. If I go to any autistic society in my state (South Carolina) I don't think anyone will know what "ASAN" is.

Although I have to wonder how many of them are truly "autistic" given that, from my experience, ASAN, or at least some (many?) of its members supports "self-diagnosis."

I've heard that some of them are afraid to be seen and have their names disclosed because they are "self-diagnosed" with an ASD.

No, I definitely don't think this is why Sarah was concealing her full name but I have suspicions about others.

Sarah said...

Thanks, almandite; I have consistently found your analysis of the situation to be entirely accurate.

I would appreciate it if Alan would in some way step in to keep this thread from further degenerating into a discussion of me, which I believe that his original post was not intended to do.

Bob Badour said...


You have made an explicit false accusation of libel--yet another serious tort--directed at me.

Do not address any comment or message to me in private or in public. I find your vexing and vexatious accusation threatening and harassing.

I note that someone identified as almandite, who operates a blog, appears on that blog to be a friend of Sarah's. Sarah and her friends appear to be conducting systematic harassment using frivolous and vexatious legal threats. Stop now.

Bob Badour said...

I find ASAN's official silence and unofficial harassment here unconscionable.

Sarah said...
This comment has been removed by the author.
Clay said...

Bad Bob said:
"I find ASAN's official silence and unofficial harassment here unconscionable."

You're nobody to "judge" anything. Go find your ass.

Bob Badour said...

I repeat: I find ASAN's official silence and unofficial harassment here unconscionable.

Amanda said...

"layers of if-you-defend-that-person-you-can't-be-my-friend"

...that. Exactly. Most of the complex layers of strange power dynamics, strings attached no matter what opinion you take, etc., is way over my head.

From the parts I understand though I don't think I am on anyone's "side", although I notice that if you have one opinion then another side will call you a mindless sycophant, and vice versa.

I will likely never be a member of ASAN. The way I operate on political issues around disability is I generally will find a different group to temporarily help out with for each aim I feel like working on. It's possible to get a whole lot done without being a permanent part of many groups if any at all. I operate this way because groups tend to eventually feel like a trap -- places where people demand you follow their opinions Or Else, and where both subtle and obvious kinds of groupthink are everywhere. Not that groupthink is impossible outside of formal groups but inside them it seems to become more intense.

And yet by staying mostly on the outside of the actual groups but working with them if necessary I have managed quite a lot both online and offline in both autism-specific and disability-general advocacy. The only group I'm part of is AASPIRE but that's a research group. But yes it's totally possible to not be part of ASAN and yet not simply be on the sidelines. I have gone to my state house, coauthored a paper with the aim of getting communication devices to as many autistic people as possible, and a lot more.


Amanda said...

There's a lot I don't approve of about ASAN. I have had problems with it since before I heard of what was happening with Michelle. As for individual people within ASAN they like any organization range from people I really approve of and people I really don't. Ari is a mix of the two.

However I think what Autism Speaks is trying to do to him is terrible and is just the same old crap about how nobody but nonautistic people are autistic enough to represent the interests of autistic people. Which is both ridiculous and unethical. Just because it happens to someone I have some problems with doesn't make it right and doesn't mean I am going to go join the ranks of autism speaks by saying he shouldn't have the position. (And in my ability to separate those two issues from each other I feel quite different from most people on any side of this clusterfuck.)

I have defended Michelle before. I didn't do it because I'm a mindless groupie, I did it because her communication style makes sense to me on many levels. I do believe she's been wronged (this doesn't mean I want to block Ari's nomination or that I am oblivious to when she gets things wrong). I also think she's wrong about a lot of people's communication with her meaning "Michelle is an ogre" (this doesn't make m, or just too scared to say soe an ASAN supporter or someone who believes she's an ogre, nor does it make me automatically take everyone else's side but hers when things come up where she gets into conflicts... in fact I think her tendency to misread people on matters like that makes her an easy target because people will think she's just overreacting, just as Ari's shortcomings make him and ASAN an easy target when people want to make a nasty power play against the autistic community).

I am just confused about the thing with Sarah. It just looks like people firing shots at each other in circles.

I'll shut up now that I may well have alienated every side. :-P. But seriously there are more than two or three possible points of view here. And the parts where no matter what your point of view people will do the "If you defend this person then we can't be friends" thing really is aggravating and confusing especially when you can see right and wrong in all positions including your own.

But bottom line I really do think the most important thing is that some asshats are likely to try to use this against us. And having criticisms of ASAN or Ari should not mean you have to support the crap being done to him. The trouble is that if people aren't careful our attempts at criticism from within will be used to manipulate our emotions until we don't defend someone from a completely unfair attack because we happen to feel strongly about his other actions. And so then Autism Speaks wins and we all lose. It wouldn't be like this if people's criticism and defenses against criticism weren't so damned all or nothing (and no that's not an autistic thing it's an Internet thing), and wasn't done in such a way that it becomes way too intensely divisive... it's really possible to criticize and respond to criticism without people acting like the whole world hangs on being right. If people could just rein in their fricking egos...

Clay said...

@ Amanda - A well-considered post. Reminds me of how much I like you and what you write. Like you, I see flaws on both sides. Ari will probably learn something from this, but it seems that Michelle will probably keep on misunderstanding. I'm really sorry about that, because I like her too. Those gifts they have that make them stand out are not lining up very well between them.

I agree with you that the important thing is that some asshats are likely to use this against us, and that's why I'm so angry at someone I never heard of before for making it easier for them.

Bob Badour said...


Thank you for raising some substantive points. I think you spent far too much time discussing Michelle and Sarah, though, because this is not about either of them. At one level, this isn't even about Ari. It's about ASAN. Only because Ari is the founding and current President of ASAN and because ASAN's buck stops at his desk does it become about Ari.

I suggest your comments about mindless sycophants are inappropriate. Doing a quick scan over the comments here, I find quite a list of people who neither post mindlessly nor suggest that others do: Alan Griswold, jypsy, The author, Jannalou, farmwifetwo, Sarah, and myself. (Note that it was a quick scan so I am not interested in quibbles, and I apologize to anyone I missed.)

I would include you on the above list too; except, your comment does tend to suggest mindless sycophancy in others--just not in you. I find your suggestion only serves to lend credence to cranks and trolls.

I especially object to the "vice-versa", because I don't see Alan--or anyone else who demands answers from ASAN--behaving that way or making that suggestion.

I also reject the idea that the issue here is about ego. It's not about Sarah. It's not about Michelle. I already apologized for my part in letting Sarah think it was about her. It's about ASAN, and corporations have neither brains nor psyches. No good comes from anthropomorphizing ASAN to stretch the ego concept over it.

I know ego is not an issue in my case, and I see no reason to suggest it is the case among most of the commenters here. Your suggestion that ego is relevant only distracts from the substantive issues.

Likewise, I find your comments about Autism Speaks irrelevant because nobody here, as far as I know, advocates for their position or even remotely agrees with them on method or goal.

Let's get this discussion back on track instead of running it off even further into the ditch.

I suggest that your method of working serially with different groups is exactly how most autistic self-advocates will operate. After all, focus is a strength among many autistics and maintaining affiliations is just an annoying distraction for many of us. I would say that's all the more reason autistic groups, like ASAN, need to listen to all autistics for guidance and not just to a select group of insiders. Any autistic group that pretends to be by and for us needs to be by and for all of us.

"All or nothing" thinking is not even an online thing. It is an anxiety thing.

Given your work with AASPIRE and given AASPIRE's close association with ASAN, I assume ASAN's ethical behaviour will have special significance to you.

If Ari is not trustworthy, I don't want him in a position of power or leadership. We stand to lose more than we gain in that situation. The longer this drags on and the more ASAN withdraws into secrecy, the less trustworthy Ari looks.

I will have more to say later. (I've been fasting for some blood work, and I will be more coherent after I get that done and eat something.)

Bob Badour said...


I think you have your answer. Meg Evans, Secretary of the Autistic Self Advocacy Network, promotes Ari Ne'eman without disclosing her relationship. When questioned, she chooses evidence destruction over disclosure.

Amanda said...

Bob, I was saying the only parts of this I understood. I didn't accuse anyone of being a mindless sycophant, I said there are people on both of the major sides making such accusations about anyone on the other side. I've seen it from both. I unfortunately have only been able to see parts of this discussion and I read them all over the place so I don't know where they are. But I have definitely seen accusations that both anyone supporting either side are just doing so mindlessly.

My own point about it being possible to hold opinions that aren't on either major side of this, isn't an accusation of mindlessness, it's an observation that things tend to get unnecessarily polarized into two sides in discussions like this. I font know the mechanism of why it happens nor do I pretend to but it does.

My reasons for discussing people (I think I mostly mentioned Michelle and Ari -- I mentioned Sarah exactly once and that was to say I haven't been able to parse WTF is going on there other than lots of people extremely pissed at each other... I used her name as a shorthand for the blog thing and didn't discuss her at all)... was to point out that my opinions of them are complex (I.e. not mindlessly supporting either of them) and have nothing to do with my opinions of what actually happened. Sometimes it takes up a lot of space to note that an opinion of someone is complex. I notice you didn't say I discussed Ari too much even though I discussed him more than Sarah and didn't really discuss Sarah at all.

Anyway as far as I'm concerned the biggest issue is not ASAN's behavior but rather not letting this kind of conflict affect opposition to what Autism Speaks is doing to Ari's nomination. Autism Speaks is not on the side of any autistic person ultimately and they are a bigger threat than anything ASAN could possibly do wrong even if they turn out to be corrupt on every level and in every person who works for them. ASAN simply doesn't have the power Autism Speaks does and as such the conflict about them while potentially important (and I do think they have sometimes wronged people) is as Larry said a tempest in a teapot in comparison.

Anyway I am not merely responding to the thread on this post. I am responding to everything I have read everywhere on the multiple conflicts going on at the moment (which mostly look like clusterfucks of combinations of people actually wronging each other, and people misunderstanding, acting on grudges, etc). So just because I write about something that didn't happen here doesn't mean it didn't happen. Actually correct that -- I'm not writing about everything I've read. I'm writing about everything I could understand. There are parts I didn't understand and I said so.


Amanda said...

Again when I wrote about personalities it was not because I had them confused with the important things. It was to show my opinions of what people are doing and saying as personalities (which I then elaborate on a bit) are both complex (neither wholly positive or negative, to fend off charges of having an opinion because I thought someone was infallible), and unrelated to my opinions of the actual issues. I have zero control over the length of my writing, it is short or long as it comes out and I can do nothing to change it. If you (anyone) continue to mistake length for importance after I have pointed this out I'll just have to figure Ive done my best to explain and you don't want to get it or something (been an issue before).

And in my opinion the most important threat to the well being of autistics is Autism Speaks. It is also important to figure out ethical issues with ASAN. But not as important. And it is absolutely and incredibly important not to let problems with ASAN or Ari himself (and believe me I have more problems there than have ever been discussed in this whole big mess) mean that we are willing to stand by and allow Autism Speaks to pull the same scummy shit on him that it would pull on any autistic who attained that much power and didn't agree with them. "Theyre not autistic" and "Theyre not autistic enough" are age old tactics that predate the discovery of autism altogether that are used to silence people. And we shouldn't allow them to silence Ari just because some of us don't like him or ASAN on eitherpersonal or ethical levels. And that was my whole point, the rest is details. And I really have seen people say they were willing to stand by and let this happen to us (and possibly end up with someone absolutely terrible appointed instead) just because of their side on this conflict which isn't mindless either (not accusing anyone of that and not being that myself) but it's wrong, and involves losing site of the power realities. If you're not doing that then I'm not talking about you.

Lastly please don't read things into what I write that I didn't explicitly write there. Chances are if I meant it I would have written it.

Bob Badour said...

"I didn't accuse anyone of being a mindless sycophant"

And I didn't accuse you of doing so.

"I said there are people on both of the major sides making such accusations about anyone on the other side."

And I contradicted you because nobody looking for answers from ASAN here has done so.

"I've seen it from both."

Really? Who among those asking for answers here has done so, and what were the exact words they used to do so?

"But I have definitely seen accusations that both anyone supporting either side are just doing so mindlessly."

It hasn't happened here or anywhere I've posted. I don't read minds. I have no idea what trolls you may have seen or imagined elsewhere. Let's not bring them into the discussion here.

"other than lots of people extremely pissed at each other"

Other than Clay, I don't recall much anger.

"I notice you didn't say I discussed Ari too much"

Once one removes all the irrelevancies regarding Michelle and Autism Speaks, you said nothing about Ari. Of the people mentioned, Ari is the only one relevant, and he's only relevant as the founding and current President of ASAN.

This is about ASAN after all.

"Autism Speaks is doing"

Once again, you go on about Autism Speaks. It's not relevant here. It has nothing, whatsoever, to do with the questions Alan raises.

Let's try to get the discussion back on track.

As Larry said, the conflicts among individuals are a tempest in a teapot. But in my view, Alan's questions go to the heart of whether ASAN deserves any of our support in the first place.

As Alan pointed out, his questions are softball questions any ethical organization could easily hit out of the park.

"Anyway I am not merely responding to the thread on this post."

That is a mistake and merely distracts from the very core issue Alan raised in his blog post.

Whether the personalities are simple or complex or positive or negative is entirely irrelevant to the core ethical issue raised by Alan with his questions.

Let's get the discussion back on track.

"It is also important to figure out ethical issues with ASAN. But not as important."

I will not allow some Autism Speaks bogey man to scare me into supporting a despot in any way shape or form. Given what I have seen recently, I find Ari the greater risk.

It doesn't matter whether one supports Stalin against the Nazi threat or Hitler against the Communist threat. It's a mistake I won't repeat.

When I start contacting Senators and the White House to let them know I don't want Ari representing me as an autistic, as a disabled person or as a taxpayer, the reasons I give will have nothing to do with the reasons Autism Speaks gives. My reasons will have much greater relevance.

"Lastly please don't read things into what I write that I didn't explicitly write there."

You will understand me much better when you realize I already read everything very literally. I find it ironic that you read things into what I write--turning "tends to suggest" into "accuses" for example--then chastise me for reading into your words when I did no such thing.

I neither read between the lines nor write there.

Let's get this discussion back on track. I don't think your follow-up said a single relevant thing.

jypsy said...
This comment has been removed by the author.
jypsy said...

That Canadian Conservative Minister mentioned in the comments here (Helena Guergis) is apparently about to resign (unclear whether she's "jumping" or "being pushed")

(deleted my previous message so I could repost it here edited to read "Minister" instead of "MP")

Bob Badour said...


Please delete my "Facts" posts and any other posts that fully name the ASAN Chapter Co-director/Co-coordinator named therein.

Now that evidence implicates the Secretary of the ASAN, details surrounding a lesser office-holder or affiliate serve no useful purpose.

Because I don't have a blogger account, I cannot delete them myself.

Thank you,

Alan Griswold said...

Okay, Bob. At your request, I have deleted your comments wherein you use the full name of the ASAN Chapter Co-Director. If I appear to have missed any, please let me know.

Bob Badour said...

Thanks Alan, you caught all my direct uses. Clay and almandite might want to examine their posts for instances where they quoted me.

Clay said...

@ Bob Badour - Yes, I've removed the one instance where I copied your use of the full name, and so almandite's otherwise excellent response is the only one remaining, I believe.

There are still those instances on ASA that you could remove. I appreciate your finally seeing the error of your ways, though I'm not sure that you completely understand the assholity of them, as you are now off on some other kick.

Maybe you'd like to see Jonathan Mitchell appointed instead?

Bob Badour said...


Error of my ways?

Breaking pseudonymity was no error. Knowing about political sock puppetry is the public interest and needs to be public knowledge. Neither did I err by posting the facts here. I only erred by doing so in a way that let some individuals think this was about them when it is not.

You would better spend your time convincing your friends of the error of their ways before they face any consequences than to waste time whining about them after the fact.

I also suggest you mind what you say lest I find a need to publicize the facts again--as is my right.