Saturday, June 2, 2007


photo credit- Isaac Mao

For followers of the blogs on the Autism Hub, one would have to have been asleep over the last several days to have missed it's mini identity crisis. Larry Arnold touched things off with his Animal Farm posting, in which he made the good point that autism advocacy should be led by autistics (although I am hard pressed to see where anyone on the Hub has suggested otherwise). He also seemed to want to rail against non-autistic adults of autistic children, seemingly for the twin crimes of drawing attention away from autistic adults, as well as hijacking the neurodiversity movement.

My first reaction was "What?", while my next reaction was more like, "WTF?" I mean, I'm accustomed to getting attacked for offending believers in "cures" for autism, but was initially blindsided by reading this in a space I consider "friendly" territory. But I figured that this was just a passing thing, and as I have followed Arnold's blog for some time, and have gained much from reading his insights, didn't think too much about it.

Then this mini crisis continued when Larry posted another time, and Kevin Leitch, having the integrity of the hub questioned, did some public soul searching on his blog.

I've held off on commenting on any of these postings, though I started a few times and then stopped. On the one hand Larry seems to have raised a few legitimate points, namely that autistics should be the ones setting the agenda for what they think is necessary, and that autistics should be in positions of power in organizations that purport to represent them.

On the other hand, I felt a little like Larry opened the door to the family room, threw in a grenade, then quickly exited. I don't mind people forcefully arguing their views, even when it makes me uncomfortable. But I felt that when Larry started making accusations regarding all the bad things parents of autistics on the Hub had been doing, but then not backing it up with specifics, that that was rather unfair. How was one supposed to respond? I'm sorry for all the bad things I've done, even though I don't really know that I'm part of the evil cabal you're referring to?

Larry seemed to repeat a couple times that more attention was being paid not only to issues he felt irrelevant (mercury poisoning theory), but also people he felt irrelevant (non-autistic parents). I'm not sure how this was determined (response counts, number of posts, some web traffic meter?).

So I started thinking. Well, what's the solution to this? Should Kevin limit the number or ratio of non-autistics he lets on the Hub? Should some of us get the hook for not being relevant enough? Do I, as a non-autistic, have to submit all of my posts to the central committee for clearance before I hit the publish button?

After thinking about this for a couple of days, here is what I think.

I don't know why Larry thinks that he and other autistics aren't payed attention to enough on the Hub. I read every post that every person puts up there. I don't comment as much on posts made by autistic persons, but I think that has been because there is a sense inside of me of a)not wanting, as a non-autistic, to hijack their post, and b)being less likely to question what they say about being autistic, because, hey, they're autistic and I'm not, so if they say something is a certain way, then it probably is.

As for my own blog, I freely admit that I'm not the greatest writer in the world. Decades of scientific education tend to beat creative writing skills out of you. But a long time ago I fancied myself a bit of a writer, and I'm trying to revive that part of myself. I have yet to find a consistent voice that runs thru all of my posts. I am a non-autistic parent of an autistic child. I don't think I should have to apologize for that. I have never tried to represent myself as a leader of anything autistic, and any advocacy I have done is primarily on the behalf of my son, as well as trying to create better understanding in the world that he will inhabit.

My writing may be spotty at times, and my topics may occasionally not be acceptable to all. But I don't have the time to worry about trying to censor myself so that I can get by the central committee censors. So if that is what is going to happen on the Hub, then I'm afraid that Kevin is going to give me the axe.

I've really enjoyed being on the Hub. I thought I had died and gone to heaven when I got the e-mail that I was being included. It was also nice to see my web stats go up. There are a lot of nice people that I've cyber-met thru the Hub, and I've considered it one of the prime sources of reliable information regarding autism on the web. Sure, some people (both autistic as well as not) on the Hub blog about things that are non-autism related at times. But I've enjoyed the humor, the pathos, the scholarship, and even the minor disagreements that have occurred. I'm not quite sure how I feel at the moment, but do know that I will continue blogging, whether I am considered a 'good parent' that is allowed to remain on the Hub, or not.

It seems just a bit ironic, that recently many were making fun of those on the EoH group for taking to task their own members who didn't have kids that were severely affected enough. Now we seem to have those on the Hub who would seem to be doing a similar thing, lashing out at those on the Hub who weren't toeing the line as they saw it enough.

I don't mind when someone breaks some eggs, but I do mind when the eggs seem to be blindly thrown at other's houses, and not used to make an omelette. I'm a bit player on the Hub, and easily dismissed. But I think that people like Kevin and Estee have been done a severe disservice, and deserve better.


Joeymom said...

I like your writing. You're one of the reasons I asked to be on the Hub. I sincerely hope that the views of one person, autistic or otherwise, does not hijack and tear apart a good thing like the Hub. Even if we get booted (and hey, if you got booted, there no way I'd be allowed to stay- I'm an even smaller player!) I'll be here and reading about Buddy Boy and Sweet Pea!


Anonymous said...

"But I think that people like Kevin and Estee have been done a severe disservice, and deserve better."

I'm an autistic man and I completely agree with you. I rarely comment on the blogs in the Hub, but felt I needed to add my voice on this topic.

I do agree that autistic voices should be the loudest and most represented, however, I disagree with Larry's premise that somehow our voices are not being heard because of the composition of "The Hub". That is a ridiculous statement which cannot be backed up with any fact.

I want our NT allies to know that I for one am grateful and appreciate the advocacy from the parents on the Hub.

Thank you.


Club 166 said...

Part of the reason I didn't respond off the start was that I wanted to make sure that it wasn't just my ego getting in the way. And partly I didn't want to be part of publicly taking on someone that's autistic on a forum regarding autism.

But I finally decided that if I respected autistics as whole people (and I feel I do), then to not say anything would also be condescending ("Oh the poor autistic guy can't really be held responsible for what he says").

I just hate to see what I consider a very good thing (the Hub) get torn apart without fully discussing it.

Daisy said...

Hub or no hub, I will keep reading your thoughtful posts.

daedalus2u said...

I think Larry is completely off base on this. Just as Larry feels that non-ASDs can't speak for all ASDs, some ASDs feel that Larry can't speak for them. That is certainly how I feel, and I feel that I am on the spectrum with Asperger's.

I think it is very important to have parents of ASD children involved. Ultimately everything we do, we do for our children, for all children. It is today's children that will be the adults of tomorrow. The world that we make will be their world in a heartbeat.

As a parent, I want what is "best" for my children. I believe that every parent wants that. I know that I don't know exactly what that is. I don't know if my children are on the spectrum. I think they are, but I have a different view of what the spectrum is than most everyone else. I think that everyone is on the spectrum, even the most NT person you can find.

I hadn't read the comments on the Autism Hub until just now, and I am quite upset.

I think Larry's comments were completely off base, and very insulting and hurtful to Kev and others. I think Larry's behavior is shameful. ND doesn't "belong" to ASDs. NTs are certainly a part of ND. How can a group be open to diversity and not contain the most abundant type? It can't.

If Larry wants to start up his own group, he is more than welcome to. He can apply any criteria to the group that he wants to.

All of us are ND. "Nothing about us without us" applies to the NTs in the ND group too.

I just read Larry's blog about breaking eggs to make an omlette and posted this reply.

"Better than breaking the eggs and making an omlette, is letting the eggs hatch and having a flock of birds.

Breaking the eggs is to liquidate their value today.

Letting them hatch is to leave a better world for tomorrow."

I don't think that Larry appreciates how important it is to prepare the world for our children. That means not breaking some eggs to grow new chickens to replenish the flock.

I am too tired to continue right now.

kristina said...

And then what about those of us who break the eggs, maybe separate whites from yolks (a skill I perfected while trying to learn my mother's chiffon cake technique), and make a cake (cupcakes, if Charlie has his way)?

I'm always happy, glad, and expecting to defer to autistic adults' voices. It is a privilege to me to be able to blog in such a community and what I have learned is infinite. I think it is something of a dance that we parents of autistic children engage in, as we try to figure out just the right balance of us "speaking for" our children, and then stepping aside.

I also think that one does not know what the diagnosis of some of us parents might or could be, whether we know it or not?

I'm Chinese American, and Chinese American, American, Chinese, Taiwanese, South Asian (=Indian), African American, Irish American, German and many more persons of many ethnic and racial identities have taught me much about Asian American literature.

I hope we can keep allowing for neurodiversities of all kinds.

Anonymous said...

What I posted to my blog last night:

What I wrote last night on my blog, reposted here:

I’m still dealing with asthma problems and those are my top priority at the moment. It’s been difficult to turn my ideas into words lately, except in direct response to others, and even that is incomplete. But a few things:

Working within an organization and critiquing its power structures, even harshly, are not mutually exclusive.

Communities that can’t handle dissenters aren’t real communities, but can certainly grow into them if they learn to handle dissent by doing something other than a Chicken Little routine.

Good allies don’t threaten to cut off their support every time they hear something that makes them uncomfortable.

Conflict won’t destroy a community, but thinking it will just might. So will incessant pettiness.

Critiquing the priorities and power of a group that someone belongs to might just be a sign they care about that group, not a sign that they are evil incarnate or “infighting” or all that crap.

Critiquing power structures that benefit certain people above others is not the same thing as saying these are bad people who must go away and leave us alone and that we don’t appreciate them.

Having impure motives doesn’t make someone wrong or wholly evil or to be castigated for those motives while ignoring some of their real points, focusing entirely on speculating about people’s motives is a good way to avoid issues though.

At the same time, it’s not always our job to reassure you that you’re not evil and awful and stuff. At some point just decide that as axiomatic and move on to something constructive like figuring out what’s right and wrong and trying to do what’s right.

Disagreeing on how things should be done doesn’t mean people can’t work together or that the entire community is falling apart at the seams.

Sometimes a person’s disagreement comes out forcefully because they’ve been hiding it for a long time, knowing what kind of reaction they’d get if they said anything. Doesn’t make it less valid.

Anyone who thinks the web is or should be a comfortable safe place like their living room hasn’t been paying attention. (Edited to add: Anyone who thinks everyone even has a living room, or that everyone’s living room is comfortable and safe, hasn’t been paying attention either.)

Communities aren’t about liking each other, they’re about bothering to do things for and/or with each other even if you don’t like them. Likewise advocacy involves sometimes gritting your teeth and doing things alongside people you don’t like, rather than sitting there grumbling about why you don’t like them (and by “don’t like” I’m talking personality conflicts here). Even if they’re grumbling pettily about you.

Just because someone agrees with you on one issue doesn’t mean they have to agree with you on everything.

Nobody has a right to be comfortable, for certain values of ‘comfortable’ anyway. Your feelings being hurt shouldn’t determine large-scale political stuff.

Someone disagreeing with you doesn’t suddenly mean they’ve taken every single stance against you that is possible to take, it just means they’ve taken at least one stance that might conflict with some things you believe in.

Disagreement won’t tear apart a community. “You’re with us or against us” thinking will. Responding to disagreement in a Chicken Little sort of manner will. The sort of thinking that gives rise to “You’re with us or against us” and “The sky is falling” was in existence before the dissenter in question ever opened his mouth, and is a serious problem that needs to be worked on if you want your community to last. And the very existence, magnitude, and nature of the reaction he got, proves he had a point, and you don’t have to agree with him (or anyone else) 100% to notice that.

This sort of thing is too petty and stupid to make lasting enemies over (although some people sure seem to be trying, and it ain’t Larry who seems to be trying the hardest to make enemies here), and it’s why the autistic community doesn’t stand a chance until people move beyond petty personality conflicts and into shared principles.

I’ve seen this all before. I’m not at my most articulate right now, I’ve mostly been struggling with breathing all day in between trying to comment sometimes. But all I’m struck by is how Larry saying one little thing seems to have set off something that already existed within this community and that was just waiting to ignite. And that thing that existed worries me a whole lot more than anything Larry said. Don’t see dissent as a threat, see it as a source of strength. Don’t issue with-us-or-against-us ultimatums and lash out and bicker yourselves to death about who said what. Otherwise you’re doomed even if you never do get open dissent of this nature again: If this community is that fragile it’ll be ineffective in ever getting things done.

Breathing trouble has a funny way of shaping one’s priorities really fast. And I know that I would rather not literally waste my breath trashing people I’m mad at on a petty personal level and feeding the flames. I’d rather respond to the parts of this that I can find that are constructive and get on with trying to do the right thing. I have limited energy and I’m not going to waste it either lashing out at people or coddling and reassuring people who as a whole have some combination of more air, more energy, and more political power than I have at the moment. They can do that for themselves. You can turn this into a constructive discussion to make this community stronger. Or deal with the consequences of not doing so. It’s your choice. I have to go to bed.

Club 166 said...

Please see my response to Amanda on her blog.


mysamiam said...

"WTF" too? Okay, I don't ever use that word, but geeesh! You are a fabulous writer. I have loved the HUB and have requested several times in the last two years to join, but have never heard back, and would have been as excited as you to be accepted. Dang, I didn't know Kev was in downtime from all of this too. Keep writing. I have learned to not read some peoples blogs anymore for that very similar reason. Even though I have been gutless and didn't leave a comment. I love reading what you have to say. Keep it up, and thanks for drawing my attention to this!

bigwhitehat said...

Is this really an identity crisis?

I think it is less of a problem than it seems.

I have no problem with groups of any kind being exclusive or inclusive. But those groups need to be one way or the other depending on their purpose.

So, what is the purpose of the Hub? "Autism Hub is a central point to find blogs about autism from autistic people, parents and professionals."

Sums it up for me. Perhaps Larry should make his own web group. I might even read their stuff.

Anonymous said...

I use to belong to about 2 years or so ago. I got so tired of the camps "mercury", "militancy" - political, "therapy" etc etc etc.

A couple of things finally happened. One someone got my email addy, emailed me and when I refused to become militant.. slammed me. My dh and I weren't impressed.

Then there was the "must be nice you can get those services". Those services are for all of SW Ont and a minimum of 1hr away - one way. This guy lived downtown Toronto. I live in no-man's land. Yet I'd been offering suggestions and support to anyone who asked. Spent more time on that bb than I should have.

Last was the parent that said "when IBI/ABA was here he stopped watching the movies on fast forward. Now that they are gone he's back to it". ????? As a parent why are you letting him.

I tossed up my hands and gave up.

I have a few ASD online parent friends. Mostly we discuss books, life in general, not ASD. I finally started a blog at the insistance of one of my friends

I refuse to ever join a clique again. You cannot pls everyone and I am who I am, I do what I do for my children. Anyone is welcome to come over and read my blog.

Just remember as the header says "A place to post what I wish.. if you don't like it.. make your own". Cause I delete rude replies.


mark john said...

cbd for sale, cbd legal shop, cbd near me, cbd premium, cbd hemp oil, cbd capsules, cbd oil

Akasuki said...,, world vision, sponsor a child in india, sponsor a child

Yarley said...