Tuesday, June 5, 2007

Ride the invisible bus

I am not a leader of any sort and I’m a lousy follower. I think of myself as more of a getter-out-of-the-way, but then I can’t seem to stay out, I’m always coming back to put my two cents in.

I know that everyone is already loaded down with too many analogies and metaphors, but I can only tell you how I’ve been thinking about the recent Hub discussions in this way: Somebody started talking about who should be driving the bus. Everyone agrees more or less that autistic people get to drive; this is an autistic bus we are talking about. (Unless it’s really a neurodiverse bus, and that’s a separate issue.)

The first problem for me is that I don’t see the bus. I see people in cars, on bikes, in chairs, on foot and even on horseback all moving in approximately the same direction. At some points we diverge and then come back together; some veer off on other paths, but mostly we are headed in the same general direction. We are each driving our individual vehicles, sporting the bumper stickers with which we most identify. On the way, we do our best to find other vehicles to join us. If there was a bus, I missed it.

The second problem is that I find myself getting nervous when people aren’t what I consider “nice”. A funny thing happens though, over a couple of days, I find myself making excuses for the mean, rude or insulting statements of some, while continuing to hold others accountable for similar indiscretions. I start to realize that 1) I am not the Autistic Miss Manners of the internet –it’s really none of my business how anyone expresses him or herself; and 2) I’ve formed a lot of opinions about people whom I’ve never met, based on the judgments I’ve made which have more to do with their writing styles than anything else.

Someone made a remark that seemed rude to others, who then made more insulting statements and the whole thing snowballed out of control before the actual discussion of the issues even got underway. Now a person who is an experienced and knowledgeable activist wants nothing more to do with the rest of us. And others are talking about leaving not only the Hub, but the whole neurodiversity "movement" as well. Everywhere these discussions continue, I see the same thing over and over: I didn’t mean this, you don’t understand that, “a failure to communicate”. And I believe all of it. I really believe that no one meant any harm or offense.

I try (and often fail) not to generalize about autistics, but one thing the DSM seems to have right is that we all have “different” ways of communication, both expressive and receptive. Not that NTs don’t have plenty of misunderstandings, but from what I’ve seen, I’m not the only autistic person who has to say things in several different ways to have even a hope of getting my point across. This is one reason I sometimes prefer pictures to words.

And even knowing all this, I forget sometimes, that I might not be seeing the big picture, I might be missing the “gist” of what’s being said. I get hung up on details, often concerning the use of language. And that’s not even wrong, it’s the way my mind works.

In addition to having what I see as an identifiably autistic communication style, I also admit to being a specialized thinker. I am not a generalist, by any means. I will never be able to do what Diva does or what Kathleen does; I don’t have that kind of drive about collecting and analyzing the types of information they do. I’ll never be as eloquent as Andrea or as smart as Amanda or as unswervingly compassionate as Joel. No matter how much I sometimes wish I were, I’ll never be an Autistic Bitch From Hell. And Larry is so unique I can’t even put a name on the many ways I’ll never be like him.

And I’m fine with that. I think it is a strength of our community, if you want to call it that. I do what I do and when I try to do something else it sometimes works less well. One of the things I do, though, is less than helpful and that is avoiding conflict. Duck and cover, stuff is flying and I don't want any of it to land on me. I can't afford to get fed up with other autistic people and true allies to the point I want to say I'm done with advocacy and neurodiversity altogether. There are too many actual enemies of autistics out there, people I must fight whether or not I like it. Sometimes conflict is necessary. Sometimes repeating oneself ad nauseum is necessary. It's not really possible to be an activist of any sort and not participate in what's going on in the community of like-minded persons.
So point me to the bus. I won't drive it-- I hate driving almost as much as I hate conflict--but I won't sit in the back either. I'll do what I do, and hope its enough, knowing there are many competent autistic people also doing what they do best. I want it to be a red double-decker. The NT allies can drive the top level. It's good to have them on board.


  1. I don't see the bus either. I'm just a mom but I read the hub every day. I just can't seem to figure out what the problem is? If I knew what was objectionable I would do my best to support what was wanted by autistic members but I just don't understand what was done, or not done, and was it done by parents or someone else?

    There's no point really I'm trying to make. After a couple of days of silent reading I'm trying to ask anyone who I think might know what's going on if they could enlighten me.

  2. Excellent post. My sentiments exactly.

  3. Thanks for this and more than glad to be a fellow traveler. Just let me know if I don't seem to know how to read the map.

  4. Mum -
    The last thing I want to do is stir up any more controversy, so here is the briefest version:
    A Hub member commented that he felt that the Hub was becoming NT-centric, and was concerned that this may have a negative impact on the Hub's ability to accurately represent autistic advocacy viewpoints. Many people offered opinions on the topic. Some did not agree with each other, and bad feelings were the result. It's unfortunate. Hopefully good will come of it.

  5. My vehicle is in PARK right next to mumkeekingsane above.


    Karen in CA

  6. Thanks,Bev. Um, about the double decker...do all us NT parents have to sit up top or can we sit wherever we want (so long as we aren't trying to drive, I mean)? ;-) I'm great at watching for street signs and landmarks and such.

  7. At the risk of starting more contention.... :-)

    I never saw a bus either. I think everyone has a car. There might be a "race" in some people's minds, so they might go out and get their whatever "turbo-charged" or they might get a new paint job or new wheels, or tinker with the spark plugs in order to make their car more likely to "win"...

    But maybe the guy who is getting an alignment, doesn't realize that at that moment the wider world is only intersted in declaring the prettiest car to be the "winner"... or the guy who's polishing his chrome in order to win the beauty contest doesn't realize that it's about fuel efficiency and the "winner" will be the one who uses the least amount of fuel to get to 65 mph and maintain that for 57 miles...

    see the criteria for who "wins" is in the eye of the beholder. There may be a general sort of standard out there in big wide world of public opinion, but it's also changeable, this week is beauty, next week it's speed.

    So... if we all "get on one bus" and accept the orthodoxy of the one driving that bus.... what if the bus turns out to be heading the wrong way or it's burning to much fuel and whatever and is seen as a "loser" by the wider world?

    Isn't it better if we all choose to race our own car (motorcycle, rickshaw, tennis shoes)? That way if we look over and see that the NYT is declaring the guy with the shiny car the "winner" by interviewing the guy with the shiny car and acting like he's the "winner" and gets to speak for "autistics"... we can decide if we better start shining up our motorcycles so that the NYT will interview us next time...

    OR we can say, "shiny is not what it's about" and work hard to communicate that it's really about fuel efficiency, and do our best to win in the "fuel efficiency category".

    If there are NT's who keep winning, well, guess what???

    We can admit that they system currently is favoring declaring the NTs (who all seem to be driving gray Volvos and favor nice looking rims) are winners.

    We can choose to try to get our our gray Volvos or maybe we'll see if a gray Lada will be adequate, and we'll try to get some nice rims because that's what's "winning" the attention of the NYT (Boston Globe LA Times, NBC, ABC, BBC...) this week.

    Or we can try to offer the wider world something much better than the gray Volvo drivers have.

    There is no central governor who says what is right and what is wrong. So we all compete.

    What we have going for the autistics is that it is currently understood that minorities should speak for themselves.

    120 years ago, it was not understood that women in the US should speak for themselves, right? But look what "minorities" have working on their side.

    Other than that, autistics probably aren't going to win in the "charm" contest, they might win in the "beauty" contest, they probably aren't going to win in the "money" contest, ....

    Autistics without their own autistic kids are probably not going to "win" as fast as the autistics with their own autistic kids, because on currently successful tactic is to say, "but you don't have an autistic kid! what do you know?"

    Amanda and Michelle deal with that accusation, for example. Phil Schwartz and I don't.

    Phil Schwartz and I fail because we are "Asperger's" merely Asperger's, not so credible compared to "classic autistics" like Amanda and Michelle.

    Amanda wins out over Michelle in the weird NT defined "who is really autistic" contest, because Amanda can never "passes for normal" in person, while Michelle can once in a blue moon, maybe.

    But Amanda looses out to someone else who can't write in standard English, so that when they read Amanda she seems less autistic than someone who writes in an unstandard way, that is IF the criteria for who is really autistic is based on how not-normal their writing is.

    Someone who doesn't want to write might win out over someone who writes...

    And all these weird criteria change all the time. There are "clubs" that would let me in and keep out Amanda, and visa versa.

    All we can hope for is that all of our efforts make a difference "where the rubber meets the road". We can yell at someone, "buff up the chrome buddy, here comes the NYT reporter!" and that might not even be what the NYT reporter is looking for.

    Autism Diva speaks in the third person and is cranky. Does the NYT reporter really want to talk to that kind of persona?

    Probably not. But maybe if they were desperate they'd talk to Autism Diva because she graduated from UCD.

    Autism Diva has one of those cars with the daisy's painted on the outside and barbie doll bodies wired to the bumper or whatever... someone could yell at her to get her act together and get a gray Volvo, but Autism Diva doesn't think that's a good idea for her.

    So? She aint driving the bus, don't wanna drive the bus and ain't gettin on someone else's bus.

    Amanda has a great "car" whatever it is, and it's "winning" right now. Thank goodness!!!

    Kev's hub is a rough collection of cars that help draw attention to each other, the hub increases each blog's traffic.

    He has some rules for inclusion in the hub and can't let everyone in because there isn't enough room, literally.

    Anyone is welcome to create another hub and another hub... that would be great!!!

    What's that saying, a rising tide lifts all boats?

    If there's one car that is crashing into other cars, NT driven cars or autistic driven cars, then maybe we better tell that car to knock it off or we will pretend the driver is no longer in the race...

    That doesn't keep that driver from actually being in the race, though does it?

    He's still in the race. There's just a consensus among some drivers that the aggressive driver is not really in the race and that consensus could be wrong.

    If we all keep driving our own vehicle and try not to crash into others' that will be good. But we might crash into others,... so do we get out of the race now? Or fix the car and get back in the race?

    Autism Speaks has this big ol' shiny, pretty bus, but there are like 2 or 3 drivers and they keep fighting with each other and grabbing the wheel from each other. (smirk) We might just overtake them... in the race, right?

  8. Obviously my battered old land rover wins neither the prettiness nor the speedy stakes, leaking whenever it rains, and holding up the traffic with a top speed barely up to 60 mph.

    But I tell you this much, if you want to take off, off road, neither speed nor prettiness is an asset cos if you're worried about your paint getting scratched,or your resale value, you won't be going anywhere tough. And when you are stuck in a ditch are you going to pass up the opportunity to be towed out by a battered old landie, because that could damage your street cred?

  9. Or maybe its less of a race and more of a critical mass type of deal.

  10. niksmom,
    I wouldn't want to be one of those people who say only certain people can sit in certain spots on the bus! On the other hand, if you choose to leave the prime seats to autistics, this would, I'm sure be viewed favorably by most of us.

    Any pointing out of potholes and roadsigns is appreciated. Be advised, though, that we might not always heed the advice. If autistic X drives the bus into a stream and floods the engine, I hope you won't yell at him or anything, but will help us get it running again. We all make mistakes. Autistic Y will drive next, and may be more willing to take adverse road conditions into consideration.

  11. ""I am not a leader of any sort and I’m a lousy follower"

    Ditto and I'm riding one of those trike motor bikes with the big handles!

  12. Camille,

    Race? Competition? No way, I'm out of here! I was thinking more "convoy". Breaker, breaker one nine curebie in a plain brown wrapper).

    As far as the interviews, I think it would be ideal if the "winners", when they are NT, point the media toward autistic writers they may not have been aware of. As in, " why don't you ask the real experts?" or something of that nature. This is what I think a true ally would do, one who is really intending to serve as opposed to grabbing attention or taking over.

    And if the interviewer then calls a cranky third-person-speaking expert, well I for one would be happy to be represented by such a thinker. Of course, she would then mention the names of some others who might, at the next occasion for interviews, let the media see that autistics, quite remarkably, are not all identical.

    "Or we can try to offer the wider world something much better than the gray Volvo drivers have."

    Absolutely. Unfortunately, most people don't see what's important and are not likely to in a society which so values prestige and material possessions. All we can do is keep talking and those who have the ears to hear it eventually will.

    If we could just catch up with the curebie bus, would it really matter if we did it as a group, as individuals separately, as autistics or autistics and friends?

    If we have a bus at that point, the driver may be less important than the person "riding shotgun". They call it that for a reason, you know :)

  13. Larry,
    In a ditch, I will choose the Land Rover over the Volvo any day. I don't have "cred" to start with, so what's the difference? And you are very right about this being more of an off road event. Something more rugged than a bus is needed.

    The Critical Mass link was great. Sounds like a very apt analogy. All we need is a bit more mass (we've got the critical part down, by any definition).

  14. "We are each driving our individual vehicles,"

    Nicely said. Which is why I say "Siamo tutti autisti," which can mean either "We are all autistic," or "We are all drivers," or both. I was thinking exactly along the line you describe when, several months ago I picked the tag-line for my blog. It's a dumb tag line, because it only makes sense in Italian, and it is not even very correct Italian, but it's nice to see that at least the concept has popped into other minds than mine.

  15. Bev,

    Thanks for the kind response. I'm just thinking in terms of a race because we do seem to be under some time pressure. I'm also thinking that there is a randomness to what constitutes a "win" and there is a prize, to me it's the prize of getting the word out to a larger and larger audience (Horton hears a who... "we are here, we are HERE, we are HERE!")

    To some extent a well placed person in a current autism organization can silence us by saying to an influential editor, for instance, "don't listen to those neurodiversity nuts." The editors are "gatekeepers." They are really called that in media studies.

    So, since we want all those autisics out there to hear a message that they aren't so likely to hear from the neighborhood ice-cream salesman, things about acceptance and diversity and hope, we need to get our voices into the media.

    Fortunately, blogs are a pretty efficient way to influence the media, and can influence those who happen to read the blogs directly.

    The NYT found me and a few others on the AutAdvo group, but the reporter had to join the group to find us, and she did.

    But we can make it easier for reporters to find us or our message with websites and blogs.

    We can also write paper letters to editors and make phone calls and go visit school principals and that sort of thing.

    My blog gets over 700 visits a day, it seems that most of them land there accidently after searching for something on google or Yahoo! Some people read my blog off of other sites where it's "syndicated" not something I arranged, it's partly a spam kind of thing, but my blog is propogated that way onto other web pages.

    I learned much of what I know about autism advocacy from Amanda Baggs, and Michelle Dawson and a few others. I always try to mention that if I can. I'd make a lousy poster girl for autism advocacy and really don't want to be that. I'd rather stand behind AB or MIchelle and shove them into the limelight, though I have my perseverations and like to talk about quackery more than they might want to, and I say things that are much less scientific than Michelle does and much more cranky than AB does.

    Anyway... eventually if all those autistics out there who haven't heard of neurodiversity and autistic advocacy do hear of it, then there would be a greater mass of voices.

    The big thing, to me though, is not scoring points with ideology, it's about getting people to take care of autistic people better (not drug them, tie them up, yell at them, shock them...) and for everyone to get more understanding, and to even get the right services for autistics based on an understanding of what they usually need that might not be obvous now.

  16. Camille,

    So much of what you say resonates deeply with me. Getting the message into the mainstream, I believe this should be our immediate priority, and Amanda and Michelle are excellent ambassadors.
    But they can't be the only ones! Every one of us can burn out, and its neither fair nor necessary that they carry the load alone. I think it's going to take a lot of voices to get through to a world where people think they already know all they need to know about autism.

    I would love to see something like A2P2 get some attention. Row upon row of autistic adults of all varieties, this is something I think people need to see.

    I am working on a number of projects IRL right now, including organizing a local informational event. All I need is an "alternative" type location to host it and am making the rounds this week. As a last resort, I'll apply for a city permit to make it an outdoor event.

    I don't want to be a poster person or a bus driver either. But I can be the ice cream salesman who hands out the napkins. Now, where can I get a printer to add a clever and thought provoking message to these napkins? Ice cream is good. I like ice cream? Doesn't everybody?

  17. Great post Bev. I agree about the differing modes of transportation. A bus is much too simple. The things I have been reading lately are getting very personal and detracting from the issues that we are all here to address in some way or other.

    Autism is complicated and I don't think it can be bad to explore things from every angle. It opens a dialog about the pros and cons of each issue. It allows for the quacks to be exposed.

    I also agree with what you said about people's different areas of focus and communication styles being a strength to our community. If there is one thing that seems common to many autistic people, it is 'thinking outside of the box'. The box is small. We can cover a lot of ground if we each occupy our unique spaces outside of it.

  18. Yeah, Michelle and Amanda don't want to be the only two, not by a long shot.

    They are the ones I usually push into the limelight if I have a chance. There would be no harm if others emphasized their own work or pointed to what others besides Michelle and Amanda have to say. But right now Michelle and Amanda have an imprimature on them, they have already been approved by UNIVERSITIES AND EXPERTS.

    That gives them gravitas that many others don't have yet.

  19. Awwww--that's sweet (to provide a place for we (us?) NTs on the top level. One thought--you probably already know this, but there's no steering wheel up there! Just a ride. (:

  20. Double parentheses, Anon? That's not very NT, now is it?


    As for extra steering wheels, no...that's just twisted!

    see this:


  21. Regarding the spotlight sort of thing, when CNN approached me about doing an hour-long special about me, I said that I was willing to be filmed for part of it if they still wanted to do it (at a conference they're going to be at at the same time I am anyway), but that I'd prefer they did not make me the focus of it, and have more autistic people's voices out there.

    So I recommended a really cool family I know to them, hopefully they'll be able to film them.

  22. idk, do we autistics tend to be more opinionated than NTs? Might that be the source of in-fighting or conflicts amongst us? Yes, we are all individuals, but it's hard to stand united if we're being dysfunctional about it. Do we tend to be more dysfunctional than NTs? I think these are legitimate questions, even though perhaps they might not be politically correct.

    With a disjointed front, how can we claim our own narrative? And with NTs being in the majority, they already hold the advantage. And then we end up with "Autism Speaks", wherein its really NTs second-guessing and _speaking_ about us, but often not really representing us. It should be renamed: NT Blabs. Or: Caregivers of Autistics Comiserate. ...or something like that.

    But I think maybe it's just to admit we auties have a difficult time getting our act together.

    Next steps?

  23. Hmmm... ...we aren't particularly the easiest persons to get along with, even amongst ourselves. Plus, we are the minority, _and_ we don't tend to have "the gift of gab" or charisma, so, is it a small wonder our voices are being drowned out by commiserating NT curebie majority patents of children on the spectrum?


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