I’ve done a lot of thinking over the last couple of days. I’m trying to get my head around the events and make some kind of sense out of them before I make any decisions on my own future association with neurodiversity and in particular the Hub.
I’ve read and re-read a lot of the threads and comments that preceded and also followed mine and I have come to a few conclusions that have not made me happy in any way but I intend to speak my mind.
The first conclusion that I have come to is that Larry is a pseudo intellectual poseur. I’ve looked carefully at what he has written both now and in the past and applied his own criteria to his words and actions. I find him duplicitous – dishonest and narcissistic.
This does matter. Larry makes some strong allegations. It is these allegations and his subsequent behaviour that led me to my conclusions about him.
A prime example of Larry’s purposeful misinterpretation lies in this comment in which Larry berates me thusly:
…the battle is not being fought or won on the scientific front it is a political battle, and economic one, about education, welfare, employment rights, housing, you name it. Scientists are a small cog in a much larger machine and the media is where the battlefield lies. NT’s are not the heroes in this battle either.
I was very puzzled by these words as the post Larry was referencing made no claim that the science of autism was ‘the battle’. I also found his comment that ‘NT’s are not the heroes in this battle either’ bizarre as I don’t think I’d even brought neurology into the post. Larry had built himself a couple of strawmen which he could make himself look clever with by taking down. This was just needless narcissism.
Next, Larry made a post on his own blog in which he states:
…I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan “nothing about us without usâ€
I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.
Furthermore, that although there are ‘good parents’ who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line “but you can speak for yourself my child cannot†they run the risk of effectively taking our voice away, because we are the ones with the condition?
I tried to engage Larry on his blog about why I believed he was right and wrong (something I still believe). He is right that there should be ‘nothing about them without them’. He then infers that there is a problem associated with this statement originating from some parent blogs in the Hub. He then goes on to expand on his comment on my blog about how vaccines/mercury/science is not the main fight. He closes by saying that ‘the message’ should come from ‘us’ not ‘them’ (parents).
All of this was couched in Larry’s usual pontificating prose style. At no point did Larry ever mention any specific examples of these parent blogs he was so concerned about. He makes no explanation or examples of blogs in the Hub that abuse the notion of ‘nothing about us without us’.
I was concerned about this enough to want to write my own blog entry about it and try and get as many views as possible, particularly from autistic people.
During the course of the comments I read some of the statements Larry had made on Steve’s blog – a harmless enough post Steve had made promoting a few of the things going on. This was Larry’s first comment:
I happen to believe in the promotion of the case of autism from an autistic viewpoint contra mundum and in spite of everybody. This is Cosa Nostra, our thing, autism advocacy will only ever be advanced by ourselves speaking for ourselves and so I don’t go a bundle on NT’s even if they are on our side, being promoted to hero status.
Again, Larry seems to be building strawmen for himself to knock down. No where in Steve’s post did he advance an opinion that promoting the case of autism should _not_ be made primarily by autistic people. Nowhere did Steve refer to anyone as a hero.
I left that whole post taken aback by the use of the phrase ‘cosa nostra, our thing’. It seemed to me that Larry was claiming that Neurodiversity was solely the province of autistic people. This opinion was reinforced when Larry followed up his first comment on Steve’s blog with this:
Your blog which I have commented on talks about parents, it seems to me that neurodiversity has been hijacked.
Now I was genuinely alarmed. Firstly by the thought that autistic people might think that parents on the Hub was hijacking the issue of neurodiversity but even more so by Larry’s obvious and growing inference that neurodiversity was strictly something to do with autistic people and no one else.
That bothered me a lot. It is most certainly not what I thought neurodiversity was and most certainly not how I had had neurodiversity explained to me.
It was at this point that I first began to suspect that there was considerably less to Larry than I had ever thought. However, I asked in my next comment if autistic people would tell me their thoughts. They were pretty much in line with my thinking. Four commenters who are autistic essentially said that autistic people should lead but they were very happy with how the Hub worked.
So now I was perplexed. What was _really_ going on here?
Larry’s next few comments were about his personal history with the disability movement and how it evolved. They seemed to be an exercise in meaningless verbiage.
I still had no idea why Larry felt that neurodiversity was solely something that belonged to autistic people or what specific thing(s) had happened to make him think parents were taking over the agenda. The opinions of the other autistic people who had posted seemed to reflect my bewilderment. In short, everybody agreed – as they always had – that the agenda of autism advocacy should be set by autistic people.
Larry’s next comment simply added to the strawmen.
What is worrying is when the outside world, the press will seek out non autistic representatives of this blog world to represent what neurodiversity is about.
The autism hub is not the be all and the end all of neurodiversity anymore than the aut-advo list is the sum total of autistic self advocacy.
Again, it is clear from the first quote that Larry firmly believes that neurodiversity is the sole province of autistic people. His second quote is a total strawman – who ever claimed that the Hub was the be all and end all of neurodiversity?
By this point I was getting frustrated and increasingly annoyed at Larry’s evasion. His further comments only served to increase that annoyance:
As far as neurodiversity not being an autistic only thing, that is a comment I have been making for sometime with my dyslexic hat on.
This is at direct odds with Larry’s previous statements such as : _”What is worrying is when the outside world, the press will seek out *non autistic representatives of this blog world to represent what neurodiversity is about*.”_
It was becoming increasingly clear to me that Larry was being evasive and dishonest when representing his own opinions. I had made the point numerous times by this time that Larry was failing to take into account the fact that neurodiversity was _not_ solely about autism, that there were lots of other ways of not being NT and also that there were plenty of bloggers on the Hub that were both autistic _and_ parents.
All in all, I asked Larry about eight times to provide examples of what he was talking about e.g. where bloggers on the Hub that he knew were definitely NT were trying to wrest the agenda away from autistic people. He never did.
There was plenty more bloviating passages of prose about the history of the disability movement but that was about it. There was – after I pinned him down – an admission that:
neurodiversity does not belong exclusively to autistics it is an evolving culture
Which was a great relief to hear.
However, I’d reached a pretty firm conclusion by this time on what Larry’s motivations were based on his words and deeds. He is an attention seeker who is annoyed that he isn’t the story. Throughout this entire episode he has made accusations that he is unable to backup, he has switched positions when exposed in his illogic and has demonstrated a nasty tendency to turn neurodiversity into The Larry Arnold Show.
The final straw for me was when he told me that the work that some of us had done with mercury/vaccines was actually misrepresenting autistic people and/or neurodiversity.
Since than I have been inundated with email, primarily from autistic people, telling me that my suspicions are correct. Larry like to ensure that Larry is the show. These are people who have known Larry online I’ve also heard from one person that Larry comes from a philosophical perspective that likes to blow things up and then see whats still standing to work with. That isn’t a philosophical perspective, thats just stupid.
Lets boil down Larry’s actions and words into a nutshell. He invented a problem and then couldn’t back up his claims. The guiding principles of the Hub are laid out on its homepage. If Larry or anyone else can show me where there is a growing cadre of parents abusing those ideals then we can act. Until then, the only issue is how Larry deals with his tendency to overblow nothings into somethings in order to bask in the attention.
Think I’m being too harsh? Well, I’m just emulating Larry and trying his trick of pretending everything is a pseudo-intellectual exercise in destructive philosophy.
Larry once said:
As for what people consider people to be, the evidence is in the actions not the protestations of innocence.
Which I’m guessing is his way of saying ‘actions speak louder than words’.
This parent blogged about the Judge Rotenberg Center.
This parent blogged every time an autistic child was murdered.
This parent blogged when quacks abused autistic people.
This parent blogged when autism was misrepresented in the media.
Those were this parents actions. I’m not sure what Larry’s were.
NT Parents cannot be leaders when it comes to autism advocacy. Did they ever want to be? Were they trying to be? No. I’ve seen nothing that would indicate they were.
The events of the last few days will have an impact. This was played out – and will continue to be so played out – against the backdrop of the web. The web was the enabler that brought autistic people and the parents of autistic people together. As this plays out, the web will record everything. Parents who ‘found’ neurodiversity via the web will find this too.
Right now we stand at a crossroads of opportunity. Right. Now.
Autistic people have had a horrendous time in the past. I know as much from reading the emails and blogs of those who survived it. They have been let down by parent organisations time and again.
But that was the past. At some point autistic people who do not trust parents are going to have to start. We are not those same people who let you down. We came to autism advocacy via the words of autistic people. We did not come via parent led organisations. You call the shots. We get it. Continually harping on what parents have done to you in the past is pointless in this respect. A non-autistic parent being interviewed about a website he created is not a threat to you or your autonomy. Please stop living in the past and try to see the opportunity of right now. Again, we do not want to lead you, we want to support you.
What do you want? An opportunity to wield the power of both autistic and non-autistic people? Or do you want to carry on putting your hands over your eyes, ears and mouths and reminiscing about ‘the bad old days’? Has it really got so bad that now you actually have the opportunity to use this power that you have to invent factions where none exist in order to escape the responsibility of using it? Now that you are very close to getting what you say you’ve always wanted from parents are you worried about accepting the mantle?
Parents are not perfect. We are much newer to this than you. Even those of us who, like me, are not NT but are not autistic either, and who have fought our own battles through the decades are not spat out of an allies-factory somewhere, ready made with all the right answers and actions. We *will* screw up. We *will* get it wrong. We need you to guide us in these times. If you want to lead, then act like leaders.
And the last thing we need is vainglorious challenges to our non-existent actions when you are unable to point out exactly what it is we’ve apparently done. This world we cohabit in is difficult enough without having phantoms to fight.
I would also urge some of you autistic people to be very careful of your own neurobigotry. One person has said that my actions are a total overreaction. Maybe. However, my own neurology makes this impossible for me to avoid sometimes. Would this person be happy with me if I said that their actions were totally antisocial? Or if I said that their inability to perceive a differing neurology indicates their lack of theory of mind? Or would I be accused of ableism? This person also said I should make every effort to separate the message from the personalities involved. I have. My neurological make up makes that very, very difficult to do but if I want to try and pass as normal I can sometimes do it. However, I was surprised to hear such encouragement to assume normalcy from someone I always considered a strong advocate for being who you are at all times.
This entry will solve nothing. Its not intended to. Its merely me letting off steam. I still have no idea about what neurodiversity is anymore or my role (if any) in that movement. I still have no idea what to do with the Hub. However people can rest assured Larry will have no role in deciding its future.
Left Brain Right Brain 
I’m disturbed by this whole issue, Kevin; I don’t like conflict of this nature… and I’ve basically shied away from it in order not to end up getting too anxious.
However, I’m happy to see Hub parent input in the whole discussion on autism; I’m also glad that there is a forum for autistics to contribute serious input too. I’d hate to see that disappear.
I did not wish to pursue it because I am behind with my academic work, and as I have posted on my own blog your persistance was only pushing me to say things that would upset the status quo even more.
I have now lost faith in the hub, I think I was right because the evidence is coming out in the accusations against me because I upset a cosy apple cart.
please remove me from the hub, I do not want to be part of it, I wish to be free to comment without being associated with it.
I resign.
You have no idea how relieved I am that you finally came to this conclusion. Neurotype be dammed, you’re still a lot more intelligent than this postmodernist. And I don’t care if I sound harsh, period. This adds just another reason why I believe postmodernist/structuralists do little more than hamper genuine progressive activism.
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In addition-I think the clashing of egos is natural in any group, that there inevitably will be more, the only question is how to deal with future conflicts before it goes out of hand again. This is most likely only the tip of the iceberg and to be expected. As neurologically different as autstics may be, I think it’s naive to think that any of us should act any differently. Politics is not a polite or rational activity, no matter who is involved.
I do wish that Larry would re-consider, and stick around. His (rather skewed and veering, to tell the truth) point of view on things has provoked some good thoughts in my head which I think might not have occurred, otherwise.
Yup, he’s right weird, and so am I, and so are we all.
As long as we keep up good manners, we can be as weird as we like, I think, and still do productive communication with each other.
Civil rights movements have always benefitted from support/advocacy of other groups.
Where’s the problem?
I’m sorry this is all happening. It seems to have escalated so fast. I wonder if Larry could be given more time to expand on his viewpoints after he’s caught up with his academic work. It’s difficult to get really into one thing when one is behind with another.
It seems to me that the Hub is not the whole and end of neurodiversity- but its focus is on autism who are participating in the wider idea and movement. If you are only reading the HUb and think that is all there is, then you will certainly get teh idea at neurodiversity is just about accepting autism- this is the autism corner. It would be like going over the freezer section of the grocery store and thinking all food must be frozen.
I find it surprising that Larry is offended thatother people might be offended or interpret his words as abrasive, and would wish to respond to them as they see fit. He’s had no trouble responding to other people’s words as he sees fit.
Dissenting voices are valuable, even if they make you stop and think about where you are and what you are thining about and why.
I do think that some of what Larry said did have some truth, although I’m terrified to say that because I can’t produce reams of documentation right now and worry about what I’ll be called. The fact that I’m worried shows that non-autistics do have some power here, rightfully or wrongfully (I’m not saying anything evil is going on as far as anyone having power, nor am I saying anything should change in this particular instance, nor am I even saying who has the power – please don’t add to my words here, although please do not think this disclaimer applies to everything I say on any topic either).
There certainly has been a lot of comments in the first few days that are basically, “I [a non-autistic person] have just as much right to lead the community as an autistic person because I have a kid am and doing a good thing” and “Autistic people don’t want to lead themselves, and couldn’t do it anyhow.” That’s far worse than the stuff Larry said, bad as it may be. There’s a real problem here.
No, it isn’t about who can blog on the hub. That has little to do with the issue, and, once again, I don’t have a problem with the hub. But I do have problems with some of the comments I’ve seen from people I thought were allies. (I also had a problem with Larry’s comments, so don’t think I’m just picking on parents)
I’ve also had plenty of people try dismissing my (and others’) concerns with trite phrases like “identity politics” and “ego”.
Yet others have said that the way we’ve fought prejudice in the world for the last 200 years is all wrong, since most of these movements had the people most affected by them at the helm. Several comments, ignorant of history and the realities of the power dynamic, have suggested that non-minority members should have led these groups. I don’t even think the mercury militia would say that the NAACP shouldn’t be run by blacks alone, although certainly they would agree that parents need to be listened as much as autistic people and that autistic people can’t (or don’t want to) lead.
Yet others have said that autistics are not ready for self-advocacy, essentially. That is too close to the cry of the white American southerner in the 1960s when the issue of civil rights was being discussed.
I’ve seen plenty of comments along the lines of “Why can’t we just get along.” That’s a noble statement, and I certainly do want us to get along with everyone. But we can’t compromise our core principles and hand over all the power we’ve managed to get (little though it is) just because not doing so might upset someone we consider an ally.
Can I provide citations on this? Unfortunately, I didn’t think to write down comment numbers and locations – next time I will. Of course I’m willing to admit I can’t find them right now, and hopefully that is better than simply spurting out accusations but not being able to admit that you don’t have evidence. But these are real problems that came out in the middle of this stuff. Whether this battle was justified or not, it’s left things that I think as a community we need to deal with. Autistic people need to figure out if I’m full of shit or not, and our allies need to take their cues from them (which shouldn’t be a problem if they are true allies). If most autistic people disagree with me, than our allies generally should ignore me in this area. I’ll be upset, but I won’t be thinking that it was anything but us willfully giving up any small amount of power we’ve gained over the years. That’s fine. But they shouldn’t dismiss what I’m saying because they don’t like it (and I don’t think our true allies – many of which are on the hub – will).
Once again (I hate having to write 50 disclaimers in each post, but it seems that people make assumptions if I don’t – heck, sometimes the do if I do), this isn’t directed at the hub. It’s bigger than that. It’s also not what Larry is saying, but rather does include some of the things he said without including everything.
I still think Larry’s motivation was bad. I don’t think he should have started what he did if he didn’t have time to finish it.
It’s like Larry can be as rude as he wants but everyone else needs to bow to his need for respect. Mike Stanton explained some of the problem on Larry’s blog. Larry see’s the hub as something it’s not.
Joel, I didn’t see the posts where parents said autistics are not ready to lead themselves. I still think there’s a big problem with assuming that people are non-autistic if they are not willing to “out themselves.” The NAACP might have people who look exactly white, more white that I look, and those people might be considered black because of how that works in the US. You know, the one drop rule.
I don’t appreciate what Larry did over all. He was unreasoning and mean.
Yes, he made points that need to be discussed. Right now, I think he’s made it much harder to discuss them than was necessary.
I don’t think Kev’s reaction was about his “ego.” I think it was the reaction that Larry wanted. If Larry exactly wanted that reaction (hurt and confusion) is Kev to blame for having it? Does Larry get to sit back and say, “What? What? I didn’t do anything,” like a bully?
That is based on my mind-reading of Larry. Mind-reading doesn’t really work. I could be wrong, I realize that.
Kev, I don’t think you need to reconsider your role in “neurodiversity” or anything else. I don’t think you had done anything wrong that needed to be changed.
If there are parents who are slowly shifting toward a point of view that is too NT-parent-centered, then they should starting shifting back to a view that is more autistic advocacy centered. And I think it would be good if more people knew about Larry and Ballastexistenz, and Muskie and Joel’s and jypsy’s (and other’s) history in dealing with disability rights and autism advocacy, etc.
There are some key points that they, the “old timers” know that are getting lost in the mass of new discussions, it seems to me. I’m not an old timer.
People need to know about: Autistic People against Neuroleptic Abuse APANA, http://apana.org.uk/ Because some parents on the hub are apparently talking about giving their kids neuroleptics, which they have the right to do, obviously, but talking about it in front of people who have been harmed by those same neuroleptics is kind of hurtful, or maybe it’s dangerous or stupid or something else, I don’t know I don’t have experience in this area. I’m trying to facilitate or something.
Maybe there are articles on autistics.org that would give people a bigger feeling for the history of autistic self-advocacy? We can’t make people read them, but encouraging “newbies” to read them might be helpful.
Ms Clark: One thing you said that I’ve seen over and over again was basically that anyone could be autistic, we don’t know.
That’s true. I’d agree. But if you aren’t willing to identify as autistic, it’s only reasonable to assume you are not. I’m not going to give Mr. Best a key part of the advocacy movement because he *might* be autistic, anymore than I’m going to give any non-identifying parent the same weight as an identifying person.
I’m pretty loose on my definition of “autistic” – I’m not going to require documentation or anything else. But it’s not too much to say “If you’re going to pretend to be non-autistic, then you shouldn’t expect us to treat you as if you are autistic.”
To stick my neck out again- I’ve found Joel’s comments more interesting and insightful, and indeed helpful to my understanding of the issues in hand, than Larry’s. There was effort to provide clearly communicated reasons and logical explanation for his points. I may not agree, but at least I feel more secure in my understanding of what he is saying and why.
Joeymom:
I saw effort in Larry’s replies as well. I did not see, however, the same results for the effort. I in fact saw a pattern I’m all too familiar with of trying to keep up with too many threads of language at once and losing a lot of them by necessity, then getting the pressure upped and upped and upped by other people, making things fall apart further, but masked by the fact that he was producing words at all.
I don’t think it’s productive to compare Joel and Larry on that basis. I do think that Joel is explaining in many ways the background behind what Larry is saying. It’s good to tell him that’s a good thing. But it doesn’t mean anything bad about Larry that Larry was unable to do the same. I’ve been in Larry’s position before, and I’ve been castigated for “not providing solutions just providing problems” or “not explaining why you think that way”, when I was working all I could just to say the things I did say, under increasing pressure and hostility (which makes it harder to communicate, not easier). And it sucks.
And by the way I can’t explain a lot of the reasons for what I think of all this at the moment either. It doesn’t mean they’re not there. I can’t even explain half of what I think in general, let alone the reasons, let alone with citations. And not even just about this at the moment.
I can remember a time though when I was mentioning something I’d read in several. It was at a time when I had speed-read upwards of 50 library books in the course of a week, had them all go into the back of my head, but had no foreground. A person started telling me I had to back myself up, that I couldn’t just say I read it in a book.
I tried to say that I was having language trouble and recall trouble and that I had read it but that I couldn’t remember where.
I was accused then of wanting special privileges for being autistic, of being unwilling to back myself up, and also of making up having read what I’d read. She became increasingly hostile, and put on more pressure, which made it harder to respond. Meanwhile any protestations on my part were seen as wanting special treatment.
Took me a long time but I did find tons of quotes from books. Proved her wrong.
But that wasn’t the point.
The point was that when I was immediately unable to do something, I was judged harshly and unfairly, and then when I said this was harsh and unfair I was told I was just being held to the same standards everyone else was and ought to be grateful to be treated as an “equal” (they thought “identical” was “equal”).
I read the statements above of Larry and I don’t see contradictions. I see what he was trying to say, in a complex situation under pressure, and how saying “autistic people” in one context was taken as implying a whole lot more than it did. I don’t see things unfounded, I see foundations unexplained. (And I know some of the foundations, and I can’t explain them either right now, but they do exist and I know what he’s talking about often.) I see attempts at pointing where some of the foundations are, dismissed as pointless posturing. (When I know the same foundations and they are neither pointless nor posturing nor many of the other ugly things said about them.)
I’ve also been subject to the “I asked you _____ times and you didn’t answer thing,” when I was trying to come up with words around one thing and didn’t have the energy or capability of coming up with the answer to every question, or even at times when I didn’t see the question. And then people reading into things, the fact that I took long to answer. Or even reading into the timing of my answer if I finally gave it, even if the timing was based more on “I have finished something else so now I can concentrate on this.”
These things are frustrating to deal with from any angle but they are not the evil they’re being portrayed as here.
(And if you look closely you can see language problems and leaving-context-out problems aplenty even in my reply.
)
Joel said: “If most autistic people disagree with me, than our allies generally should ignore me in this area. I’ll be upset, but I won’t be thinking that it was anything but us willfully giving up any small amount of power we’ve gained over the years. That’s fine. But they shouldn’t dismiss what I’m saying because they don’t like it (and I don’t think our true allies – many of which are on the hub – will).”
Sorry Joel. I don’t mean to single you out, however, I find your choice of words very interesting.
For example, “power”, “allies”, “giving up”. A somewhat militant choice of words, I would say.
Lastly, and respectfully, I believe Larry’s ego can be evidenced by his constant reminder to us about the breadth of his academic workload.
For fucks sake, you would rather I failed at University than I did not take up all my time with a content analysis of what I find annoying in the hub?
I see you all for what you are now!
People really are determined to make an enemy out of me aren’t they?
Camille knows my mind better than I do? NOT.
It really is a case of agree with me all the time or you are not my friend it seems. When I agree with people, or say things they agree with here, it is fine, the moment I say something unpopular or contraversial I am demonised in the same way as the mercury mob.
There is no way I will ever align myself with this blogging community again, this has gone beyond reasonable argument.
Fortunately the hub is only a small part of the autistic presence on the internet.
I think this is all about ego’s never mind mine, you are all full of it, fine when your egos are massaged but oh so eager to find a scapegoat when things are challenged.
You expect me to remain calm in the face of this onslaught. Well sorry I do not exist for your benefit either as a convenient punchbag.
You want me to change my mind, it’s not going to happen, you are pushing further away from the hub.
I shall doubtless find another centre, but not this one ever again.
I hope when this all blows over you are thoroughly disgusted with yourselves for the slight you are doing to advocacy as a whole. Disagreement OK, but I no longer see that I see wholesale character assasination and ad hominem attacks on me.
Joel,
I want to acknowledge you for the slam, it was well delivered.
In response to something you said along the lines of “it’ll be rather like putting white men in charge of the NAACPâ€, I wrote the post below.
“I have seen racial analogies used a number of times over the past few days, the above quote is indicative. I personally believe that the acceptance of blacks within the United States has not come as far as it should have in the past forty years. While the NAACP appears to be well run and responsible for much of the progress that has been made; I will only hesitantly ask if the less than stellar progress might in a way be attributable to a lack of diversity in the leadership of the advocacy groups supporting the movement.
In the business community there are thousands of very talented individuals, they run diverse organizations and produce amazing results year after year. I have often wondered what a person such as Jack Welch, former president of GE, (just to pick a name) would be able to accomplish for any movement or cause. I wonder if he would be rejected because of his skin color???
Factionalism does not appear to work very well. Just another point of view to consider.â€
At the time it I thought it was an interesting idea, then I read this portion your post on Kevin’s blog.
“Yet others have said that the way we’ve fought prejudice in the world for the last 200 years is all wrong, since most of these movements had the people most affected by them at the helm. Several comments, ignorant of history and the realities of the power dynamic, have suggested that non-minority members should have led these groups. I don’t even think the mercury militia would say that the NAACP shouldn’t be run by blacks alone, although certainly they would agree that parents need to be listened as much as autistic people and that autistic people can’t (or don’t want to) lead.â€
Thank you for setting me straight. Now I see that it was only my ignorance of history and the realities of the power dynamic that allowed me to entertain such a thought. Heaven forbid; a white person leading a cause for people who are black, what kind of a world would that be? I thought it might be a good place but I am sorry that I forgot that only blacks can speak for blacks, or whites speak for whites, as you say even the mercury militia would know that. So much for even hesitantly posing questions.
“Lastly, and respectfully, I believe Larry’s ego can be evidenced by his constant reminder to us about the breadth of his academic workload.”
I don’t think that is ego.
I think that is him saying he’s behind with his work… he *is* studying…
” Well sorry I do not exist for your benefit either as a convenient punchbag.”
Well, said. Now who have *you* used for a punchbag here?
I understand you made some good points. I also understand that you said some cruel and vicious things. Do you deny that?
I wanted to see you explain some of the things you said and instead you said that you were too busy. Fine. Or it’s like Amanda said you can’t formulate an explanation right now. Fine.
I wish you well. I do not consider you an enemy or any such thing. I hope you can come to see that blowing things up is not always a good way to see what is left standing as someone says that you do. Or maybe that friend of yours can’t read your mind, either.
If Larry has to provide specific examples of what he is talking about, it will cause more divisiveness and hurt feelings. I think his point has been made, and people are thinking about it, and there is no need for anyone to start pointing fingers at certain people and quoting from their blogs.
Larry, I respect that you are willing to confront anyone, autistic or non-autistic, on difficult issues, but your method of doing it is, in my view, so unnecessarily harsh that people have a hard time taking in what you are actually saying. I think your methods tend to discourage some people who are doing what they can, in the way they can do it, to improve things for autistic people. I think this is a negative result, even if you do see their efforts as a continuation of the medical model of disability.
For those who feel like their comfortable corner of the internet has been invaded by unpleasantness, I submit that the purpose of this exercise is not to provide non-autistic parents (like me) with warm fuzzy feelings, even though it does do that at times. Finding a sense of community of like-minded people is a good feeling but, ultimately, this is not about us, it is about autistic people.
I disagree with the people who think that the quality of a person’s blog or internet advocacy is the measure of their right to make objections. There are plenty of autistic advocates who would not measure up to that standard, whose work IRL is just as important and exposes them to more personal risk. They have just as much right to criticize how internet advocacy is carried out as bloggers, or more skilled bloggers, do.
The Autism Hub is a great project, Kev has done an outstanding job, and Larry should continue to participate. That’s my opinion for what it’s worth (I’m sure most of the hub bloggers have no idea who I am).
I have every confidence that people like Kev, Estee, and Kristina will work their way through this with very little difficulty. Camille has done it several times already. I think people are taking this way too personally right now.
Kev, one question I take away from your post is this — how can a person stand up for himself and protest a loss of power (or a perceived loss of power) without being viewed as an attention-seeking narcissist? I’m asking that as a serious advocacy question.
I don’t see where Larry has said anything cruel and vicious….
I can only say that from knowing Larry for over 8 years that hes got more insight into grassroots disability rights than a lot of you here who are being so critical of him…. I think Amanda and Joel know the score on these types of situtations involving Parents and the power struggles autistics seem to find themselves inadvertantly embroiled in…
Kev,,,, what you have said is really bad and without conscience,,,, I am wondering if you are even NT as you come off somewhat autistic…
Well anyway I am not a writer but Mike S. knows me and so do Joel and Amanda where we all got our start on the fledling group alt.support.autism so many years ago… things really haven’t changed that much since then as far as the arguments that used to go on with Parents and autistics…
never the less keep in mind that I do believe that Larry has the highest intentions by being critical….
Some companys do take inventory from time to time,,,,, some take group inventorys to see if they are delivering the right sort of production for there target recipents or whatever…
Never the less the main issues will always be like Larry says that autistics have a Voice and that they can effectively advocate for themselfs and their issues against discrimination
Good to see you here Vicky.
I’m really appreciating at the moment the existence of people who’ve known Larry for long enough to know full well he’s not the monster he’s being painted as here.
Because the twisted descriptions I’m reading bear no resemblance to Larry, with or without his faults. And I think it’s very telling that nobody who’s known him long, whatever else they think of him, believes this crap about his every move being some showoff stunt rather than something with real substance. And I was beginning to think I was losing my mind reading these descriptions that bear no resemblance at all to Larry but that people are so sure of.
“I have often wondered what a person such as Jack Welch, former president of GE, (just to pick a name) would be able to accomplish for any movement or cause. I wonder if he would be rejected because of his skin color???”
Because apparently there are no black people capable of leading civil rights movements well? Look, this issue isn’t about rejecting people “because of skin color.” It’s about acknowledging that movements intended for oppressed groups really ought to be led by members of those groups–which is not to say that there isn’t a place for others within those movements, just that ideally they should not be in charge of setting the agenda or publically vocalizing it. Many women’s organizations have male allies working for them, but they are not the public face of the organization, nor are they soley responsible for the organization’s major decisions. Certainly allies should participate in these movements–but good allies don’t try to be in charge.
“Now I see that it was only my ignorance of history and the realities of the power dynamic that allowed me to entertain such a thought. Heaven forbid; a white person leading a cause for people who are black, what kind of a world would that be?”
I’m sorry, but anyone who believes that a white person actually can represent black people with regards to race-related issues in today’s society really is ignorant of power relations. It would be wonderful if skin color or neurological makeup didn’t matter at all, but in the real world things aren’t so simple and as such oppressed groups need to advocate for themselves.
Another Voice:
Is your statement intended to be taken seriously, or was your intention to insult me through sarcasm? If the second, please know that it’s not appreciated or indeed even appropriate.
Bones:
“Ally” comes to me via way of Phil Schwartz, who is one of the least warlike people I know – and probably one of the best autistics around at getting along with people outside the autistic community. I believe he got the word from the gay community.
As for power, that’s a major issue, and saying it’s militant doesn’t change that. I am really worried when people in the movement don’t recognize their own power or that there is power dynamics at work (and, yes, this can go both ways – equally, a prominent autistic can say or do things that hurt a lot of others, which someone else wouldn’t be able to do even if they said or did the same thing).
I would like to apologize to Larry, Joel, and anyone else whom I may have offended in my previous post. Unfortunately, my words don’t always adequately represent what’s tooling around in my thick head.
Joel, I was merely attempting to point out that your choice of words (intended or otherwise) is rather indicative of the way we, as humans, tend to see things. That is, we see the world (generally) and our problems (specifically) in an us-vs-them mentality – in some degree or another.
Larry, I don’t know you from Adam, and my comment was stupid. Period.
To the rest of you out there, I apologize because my comments offered no substantial value to what is a legitimate problem. I should heed my Father’s advice and keep my mouth shut, and my eyes and ears open.
I’ll chalk it up to a lapse in judgment, but I am sorry.
Anne – the answer to your question is that if people want to make accusations then they need to be able to point to their evidence. Its that simple. Larry provided none. After repeated requests to clarify he failed to do so. My conclusion is that there is none and that Larry simply enjoys the attention of being a drama queen.
_”Kev,,,, what you have said is really bad and without conscience,,,, I am wondering if you are even NT as you come off somewhat autistic…”_
_”never the less keep in mind that I do believe that Larry has the highest intentions by being critical….”_
So, if I understand you, its OK for Larry to be critical but no one else can? Sorry, but that is crap. As someone once said – you can’t make an omlette without breaking a few eggs. But I guess it was different for that person.
I further don’t care how long people have known Larry. His behaviour on this subject is egotistical, self-aggrandising and ultimately pointless.
Just to reiterate. The point that Larry now claims to be making _was never in any doubt_ . No one thought otherwise. However, that never stopped Larry from name-calling, making accusations of hijacking, exclusionary behaviour etc.
Larry did not make a rhetorical point. If he had – no problem. What he _did_ was make a series of accusations against people without any evidence whatsoever. Where I come from that’s called ‘lying’. You encapsulate the rhetorical point nicely:
This was never questioned by anyone. It was never in any doubt. However, that didn’t stop Larry from showboating and lying. I have no time or respect for that.
Everything raised here are issues that I think about constantly when I write about autism. From the start, I have made it clear, I’m “just a mother” and not autistic, and a parent in my position has constantly to ask herself, who am I representing, and how am I doing it, and can I really do any sort of decent job at it? (And then I start to think about the very question of what representation is, another can of worms.) I think the questions raised here about who can speak for whom; about whose voice has (most or more) authority are crucial and need to be talked about, and that no answers will be immediate. But we need to have the discussion and I think we might all be able to agree (somewhat) that it’s a sign of how these issues are maturing and developing, that we can be talking about them.
And I think we can’t forget, that everyone will be disabled someday, and that people might have disabilities and diagnoses that they have yet to write about, or are not even aware of. And that sometimes, through writing about something else—autism, here—more understanding of these other disablities and dianoses emerges.
Joel,
Yes, I was being sarcastic, and I apologize. I took your comments as demeaning and I just reacted.
Good luck to all in bringing some resolution to this current debate, I sincerely hope that you arrive at a suitable common direction.
I am not autistic, although I do have autistic family members. So maybe I shouldn’t comment at all on this. But I am going to.
I feel hurt and confused, reading all these comments, and very unhappy. I thought that the Hub, and Kev, and Larry, represented different facets of the same ideals…that autistic persons are not damaged, or worthless, or poisoned, but people who, while they may have various problems, are worthy of respect. I never felt that one group was trying to take over and be the “heroes”.
It seemed to me that each group, the parents, and the autistic persons themselves, were working together to obtain the things needed to function in society…therapies that were HELPFUL, not HARMFUL, respect, and a voice. But I guess I was wrong.
Kev, to me, while representing a parent’s view, always respected the voices of those who have autism and are able to speak for themselves. He never tried to speak for those persons…he only speaks for his daughter.
I usually like Larry’s comments; they were generally thought provoking. But his comments this time seem to have a different tenor, and they, more than any, cut me deeply. Whether he is too busy to find the words to say or just too exasperated that he is not being understood, I don’t know. I won’t pretend to know. But I didn’t feel he was trying to debate a point (and, in fact, a very important point) but rather bludgeon his viewpoint alone as the only one that counted. Please note that I am not saying that is what he was trying to do, but how the debate came across to me. I am NOT an autistic adult, I can’t speak as one. I DO, as needed, act as a voice for one who can’t talk.
Kev…please don’t give up your work. I really appreciate the work you do. Sorry this is so long, but the fingers ran along with the tears.
Kevin,
Though I may disagree with you on occasion, I have generally enjoyed your blog.
You have your objections to what Larry has said — or rather your interpretations of what he has said. That’s fine. I have often had difficulty understanding Larry, just as many have difficulty understanding me. You’re welcome to your viewpoint, in any event, and I know you’re more than capable of methodically addressing the substance of your objections (a skill which has always been maddeningly elusive to me), without resorting to character assassination.
But I am not remotely interested in your estimate of Larry’s character or worth.
From my years of exposure in many forums, I am well aware that Larry has done far more in terms of real nuts-and-bolts advocacy than you or I could begin to shake a stick at.
If his message got lost in the many layers of translation from his mind to yours, you are not to be damned for that — but neither is he. I know all too well how difficult it can be, as one of radically different development and perspective, to distill my thoughts into a string of words that the average person might find both tangible and palatable. Often, it is quite literally impossible. But I will not, for one second, be led to believe that such difficulty invalidates any given point of view, be it my own or someone else’s.
If I can’t match my words to your brain, that may be lamentable or even tragic, but it is not a crime. Perhaps there simply cannot be any translation between Larry’s way of being and your own. But I-know-you-know that doesn’t make his way of being “wrong.”
And the same is true of expression. There is a time to be blunt, a time to smooth out the nuances, and a time to simply walk away. But rarely do any two people agree precisely on “what time it is” And even when ability permits (a rare and precious commodity for many of us on the spectrum), we ALL fail in our responsibility to recognize what to say, and when, and how. Being a part of the majority in terms of developmental profile does not absolve you of such responsibility, any more than being part of a tiny marginalized minority absolves us of our part in the equation. But if bluntness is all a person can muster — and if the intricate business of smoothing ruffled feathers is beyond that person’s skills — does that automatically render their viewpoint as being bereft, that of a “pseudo intellectual poseur” (or worse — what have the mercury/epidemic zealots called you lately?), and therefore, to be declared unworthy even of a moment’s attention, much less any shred of dignity?
Well, this is ballooning into a rant, which is hardly what I had in mind. But perhaps this would be a good time to contemplate how it is that those of us who are labeled “incompetent” are then — in defiance of any sane logic — perpetually saddled with the full weight of accountability for any and every misunderstanding … and maybe reflect that, while we all love to think we are willing to “meet others half-way,” rarely is there any tangible agreement on just how far “half-way” really is. If one never has to compromise with anyone other than those with whom one is already in lock-step (neurologically or otherwise), well that’s certainly convenient, but it hardly expands one’s communication or negotiation skills.
On the other hand, we, as autistics, are almost never afforded that convenience …
You do the math.
_”You have your objections to what Larry has said—or rather your interpretations of what he has said. “_
No, I don’t, I have objections to all the bits that Larry left out. You know – the actual content that makes up _his_ objections.
How many times do I have to repeat this?
Larry’s point that ‘nothing about us without us’ is absolutely 100% correct.
However, _my_ point is that this was never questioned or in any doubt. Larry built himself a few strawmen and knocked them down, calling people names along the way and insinuating serious wrong doing.
He has set this train in motion and neither you, or he, or anyone else, should be remotely surprised when his honesty and motives are called into question as a result. I do not give a toss how much excellent work he has done in the past _that_ is not in question either.
On _this_ issue, at _this_ time he _has_ been dishonest, duplicitous, unnecessarily divisive, rude and a drama queen.
If you, or he have an issue with that I strongly suggest you take it up with him.
I have known Larry, and a lot of people have said what I think about the whole Larry thing. I like Larry, and I think Larry has done some good advocacy.
I agree with some of what Larry said, and disagree with other parts. I most certainly disagree with the way he said it, even if I do agree with some of his points.
Please let me speak about what I think about Larry for myself. It’s more complicated than anything I’ve seen posted about my view.
Sorry, just now getting back to this part of the threads…
Amanda- ok, that makes sense. Increased pressure due to the initial response is causing a problem with being able to communicate. Adding on to that that Larry says he has academic responsibilities to attend to (as do I, for that matter), the result is we’re left with only the words he has posted.
And therin lies the danger of online forums, for everyone. Typos left uncorrected. Assertions left without explanation. Time lost between an initial post an the realization that you didn’t express yourself exactly the way you intended. You end up having to explain and apologize for something you didn’t even really intend to say, or intended to say differently.
So I’ll go back to being surprised that Larry appears to be offended that other people are offended. That might be my first reaction as well, if no offense was actually intended (what are you offended for? I didn’t think that would offend anybody like THAT), but at some point you have to take a deep breath and explain yourself. And even then, people may stay offended. You can’t control that. The question becomes, can you and them all get past that moment, and get back to the point?
When an autistic person seems to so clearly object to my presence in an autism-based community, then yes, I’m going to sit up, take notice; and even think, “am I really welcome here?” because I DO care about what autistics are saying, and thnking, and feeling. I AM an outsider, doing my best to support my own autistic child, who CANNOT speak for himself yet. As his parent, I need a better idea of what he wants me to say on his behalf. Ditto for my non-autistic son, who also cannot yet speak for himself…
_”Please let me speak about what I think about Larry for myself. It’s more complicated than anything I’ve seen posted about my view.”_
Absolutely. Who would deny you that?
…and yet, a quick trawl around the Hub blogs today where this is still being discussed reveals that Larry is _still_ doing his same old drama queen tricks.
I’ve heard people say – including larry – that he has a finite amount of time and processing ability to deal with this.
An yet, he has plenty of time to carry on making (as far as I can tell) utterly baseless insinuations about the hub and how nasty it is. He even compared it to EoH on ABFH’s blog.
_”And yet we STILL HAVE NO EVIDENCE OF WHAT HE’S TALKING ABOUT”_ and _still_ people are saying ‘oh, he has a point’. Does he? What is it? Where is it evidenced? I want names and links. Larry has had a whole weekend to address this and _still can’t_.
What conclusion can we take from that? Poor, poor Larry – no time to backup even the most basic of points (but plenty of time to carry on making stuff up). And here the nasty old icepick assassin is cruelly being horrible to him.
And if Larry can’t manage it then someone else, please, feel free to step up. Before Larry’s comments on Steve’s blog, what posts made by parents on the Hub led you to believe that anyone wanted to wrest the agenda from autistic people?
Parents, spouses, siblings, children, grandparents of ASD individuals are not “outsiders”.
In the racial equality movements, people were considered “stakeholders”, if they were married to a person in the particular ethnic group.
I am not Jewish, but my children are. As their father, I have complete moral authority to speak on their behalf regarding all things, including things regarding their Jewish nature. If they had an ASD, I would have the complete moral authority to speak on their behalf regarding ASD issues, irrespective of my own ASD status.
I irks me (somewhat) to hear ASD individuals talk about “my people” and presume for themselves moral authority to speak for ASDs they are not related to and have not met, while at the same time refusing to grant moral authority to parents of ASD individuals to speak on behalf of their ASD children. I don’t have a particular individual(s) in mind, so don’t anyone take offense.
If ASD individuals in a particular ASD advocacy group don’t “like” the presence and participation in that group of parents, spouses, siblings, children, grandparents of ASD individuals, they should consider their participation carefully and consider forming an ASD advocacy group that better fits what they think they want and need.
Parents of ASD children are here because they want what is “best” for their children, and don’t know what that is. They are trying to learn what that is, so they can help their children as they grow.
As this whole thing started with Larry’s reaction to one of my posts (though I don’t think was directed specifically towards me), I feel somewhat central to this whole thing. Maybe I shouldn’t, but I do.
In my commentary on this, I talked about my opinion that the discussion seems to be centering on two things (not the semantics of the discussion, not the “players” in the discussion, not the tone of the discussion, but the real discussion; the part that has great value). I identified Advocacy and Leadership as being of importance.
I feel that Larry’s position on advocacy is off-base. I feel that parents have a stronger moral obligation to advocate for their children (regardless of neurological makeup) than members of a group have to advocate for their co-members. By saying so, I am simply making the point that, strictly from a standpoint of advocacy, this is one area that parents’ contributions do fit into the Autism Hub. Advocacy can also take other important forms. One such form is providing thoughtful analysis of the science of autism causation, done in an effort to spare autistic children from undergoing unnecessary, invasive, sometimes harmful treatments. This, in my view, also falls under the category of advocacy. Larry’s experience in advocacy falls in another area, one that is equally valid, and I want to make sure he, and others who mainly focus on that perspective, are aware that other equally valid forms of advocacy exist.
The next thing is leadership. Larry and Joel have both come out strongly on the side that leadership can only be provided by autistic people on the issue of autism advocacy. I have seen slight shades of disagreement on this topic, mainly revolving around how helpful non-autistics can be in leadership. In other words, this seems to me to have become an argument of degrees, not one of absolute yes or no. Everybody who is commenting says yes to this one. If all can agree that while there are shades of disagreement on the leadership issue, but in an overall sense it is a slam-dunk, maybe we can set this one aside for a moment.
It is difficult to establish leadership in the context of an RSS Feed – all participants write what they feel, hit the “Publish” button, and there it is. One way I feel leadership could be applied in our situation is for autistic adults, when seeing something written by parents that they feel is a harmful, naive, or otherwise undesirable attitude, they could contact the blogger and let their feelings be known. Perhaps they could also follow a pattern of “Blogging Against Disablism”, in which a blogging community is asked to adress a specific issue ona given day – a great way to provide focus on issues important to autistic adults. These things could be positive leadership actions that could get the Hub moving in a great direction (not that I don’t feel it is great already) without exclusionary principles.
I also believe that a third crucial element is Fellowship. I look forward to that being restored among all parties.
OK, Joel has outed me as “peaceful” :-).
So let me use a bit of peaceful native language from the US state where I was born (NJ):
Fuhgeddaboudit.
Kev, Larry has resigned from the Hub. It is time to stop this. Don’t waste any more time on it. It’s even less productive than arguing with John Best Jr.
Larry *did* have a couple valid points underneath the torrent of emotional $#!+ that has flown back and forth both from him and from those who have taken personal umbrage at how he said what he said.
Joel has been making those very points and asking the right questions about them. So has Amanda. If you can’t objectively hear anything Larry is saying at this point, then listen to the same points as articulated by Joel and Amanda.
One point: who determines the agenda of a movement that relies on non-native-population allies that are necessarily greater in number than their own? The gay community, the African-American community, and others have had to grapple with such demographics, and have managed more or less to do so. The answer is that it must be the native population of the community itself that determines the agenda: in our case, autistic self-advocates. Nonautistic allies have a critical role too, often a make-or-break role in what gets accomplished, but it is a different role. It is not agenda-setting.
At the risk of tooting my own horn, I think everyone needs to go reread and think about the points discussed in allies.html in order to level-reset.
Has the work of calling out the lies of the mercury militia and the quack practitioners and labs hijacked the broader agenda of autistic self-advocacy to the detriment of other vital concerns? I personally don’t think so, but *the question needs to be examined on its own merits*, not on the basis of ego and umbrage-taking.
Are the media going to seek interviews with the nonautistic parent Hub bloggers rather than the autistic bloggers? If that is the case, then the right thing for the nonautistic parent Hub bloggers who get contacted by the media to do is to insist that they be joined on conference calls with the media and in interview by autistic fellow Hub bloggers, to get the media’s audience (especially families new to a diagnosis) a better, fuller picture of what the movement is about.
Are we not calling out other issues enough — the dangers of neuroleptic drugs, for example? Valid point — one raised by Amanda. More need to join her.
The Hub is a public forum. It is *not* a social “virtual living room”.
These are all valid points. Larry, Joel, Amanda, and others have raised them. We need to discuss them without the needless oscillating volt-amperes of ego and umbrage-taken I’ve seen over the last couple of days.
So Kev, Diva, Larry, everyone, please — regarding the ego and umbrage stuff — fuhgeddaboudit.
Let’s get on with addressing the substantive questions that remain once we stop getting distracted by the ego $#!+.
And get back to doing the important constructive work the Hub has been doing overall, *regardless* of the room for improvement that thorough answers to those questions might reveal.
There’s nothing those who want to silence autistic self-advocacy and acceptance of neurodiversity would like to see more than for our voices to go away. If we self-destruct, we hand that to them on a silver platter. Let’s not do that.
Kev, I have limited processing time as well. I cannot write probably 90% of the things that I want to write. And yet I am perfectly capable of writing comments in a pointless argument that should never have happened in the first place. This does not make me manipulative, it’s just part of being autistic for me, you never know which part of which ability will be online at which time.
Autistic people are not as simple as you seem to want us to be at the moment — as I’m sure, the rest of the time, you know. Not having the ability to form words around one thing does not mean not having the ability to form words around another. It’s just convenient when mad at someone for your mind to simplify things so that the person looks as bad as possible. But it’s not necessarily reality.
You are right: The comments he made are about things that should never have been up for debate in the first place. So then why the big reaction? Why is everyone storming around ranting at each other, if he only said the obvious? If he was wrong, isn’t the answer to disprove him, rather than launch a nasty attack on his character? If he was right, what would the problem be with being redundant once in awhile, saying something people already knew?
Amanda wrote:
“I’ve been in Larry’s position before, and I’ve been castigated for “not providing solutions just providing problems†or “not explaining why you think that wayâ€, when I was working all I could just to say the things I did say, under increasing pressure and hostility (which makes it harder to communicate, not easier).”
There is a rather large assumption there that Larry is in the same position. What if that is not so? The history does not appear to support that.
“Took me a long time but I did find tons of quotes from books. Proved her wrong.
But that wasn’t the point.”
Actually that is the point, so please do take the time to find the quotes that Larry referred to way back in the beginning that supported his position.
Kevin,
You have far too much invested in “proving” that Larry’s position has no merit.
And yet, the more you write about him here, the more I want to be absolutely certain of giving him a full hearing.
Pardon me for a minute, this may just be my reaction having been abused in a setting that used words like “fellowship” to say “Don’t express disagreement with those in power” (those in power were not necessarily those with official titles). Anyone who disagreed with those leaders was “breaking fellowship” or whatever else. It’s a very dangerous word indeed.
I’ve found that fellowship happens if people truly are on the same team. If they aren’t, nothing will force it – telling people to fellowship when there is a problem is, IMHO, a mark of a cult often-times, at least from the experience I’ve lived.
I have plenty of non-autistic friends (yes, I recognize the irony in this phrasing) who I have fellowship with. But it’s not because we ignored problems or made some sort of superhuman effort to like each other dispite having completely different aims.
No, it’s not the point. I’m not going to run around looking for everything Larry was referring to. If he wants to refer to them and is able, he will. I may have some guesses what’s been going on for him, but I’m not telepathic or The Voice of Larry or somesuch. And there are more important things in life than a flamewar.
(And if this seems rude, it’s partly… I can’t write anything I want to write right now. I can write these comments. I can’t go chasing down the entire blogosphere for things. Now is one of the worst times for me to do that. I do have other things that are more important and no that’s not arrogance or something or trying to be better than anyone it’s just the truth.)
If not for Autism Hub, would the word “neurodiversity” even be part of the lexicon?
Yes. It’s been around for ages, and I think I saw it in online dictionaries and vocabulary-building pages and such before the Autism Hub existed.
(This is what a lot of people seem to lack is sense of history. It was referenced in Jane Meyerding’s Thoughts on Finding Myself Differently Brained and attributed to Judy Singer who at the time wasn’t sure if she had coined it or not, but now claims definitively to have done so.)
Joel-
I did not realize that the word fellowship had such negative connotations for you. Rest assured, I am not using it in a negative way.
Set that aside for a moment, though, and look at the rest of my point. I am stating that just about everyone agrees with your position that autistics should lead autism-related advocacy efforts.
I am not “ignoring problems”, I am proposing solutions. I am not “making superhuman efforts to like” anyone, nor do I feel most of us have “completely different aims”, when looked at in a broad sense.
If we are to move past the discussion stage and get on to activity, are my suggestions of how the autistic members (and readers) of the Hub can offer leadership worthy of consideration? Does anyone else have any?
Also please understand that I don’t feel answering this question is up to you, Joel – it really is posed to everyone in this debate.
Well, yes, ballastexistenz, I know the word existed long ago – I should have specified that I was thinking of the popular lexicon. Only making the point that, in my opinion, Kev has been an extraordinarily effective friend to autistics by amplifying their voices.
I’m sure he has been, or something like that anyway. Just not sure… never sure in these situations what point is of say thing about okay this person done a good thing then okay yes but okay not sure what long things come to attach to that to mean more than the words. (Sorry for words late night thing does have meaning maybe not clear.)