Joel’s website and blog have both moved.
His website is now http://www.thiswayoflife.org/
His blog is not http://www.thiswayoflife.org/blog/
I haven’t updated my links yet, but people should. Particularly a lot of people have linked to this page:
http://www.thiswayoflife.org/murder.html
The old Geocities site will not be updated so it’s important to update that link. (Again, not that I’ve got around to it yet.)
His current blog post, You Can be Autistic or a Professional, but Not Both also interests me. It’s about how when autistic people are professionals, non-autistic people in autism circles are more likely to view auties as just “talking from their own personal experience” and discounting any particular expertise they actually had to learn.
That’s a lot like what happens to Michelle Dawson. Never mind that she’s an autism researcher with an interest in ethics, people still think she’s speaking only from personal experience as an autistic person, and still try to paint the issue in terms of what kind of autistic person she is (or is not).
And while I’m not a professional, I do have a particular interest in certain areas of ethics, politics, and history. I’ve known a few autistic people very well, and a lot of autistic people at least a little. I’ve read any book that I can get my hands on by an autistic person. I’ve known autistic people from all over the so-called spectrum in any number of settings. I’ve participated in advocacy efforts within the disability rights movement, the psychiatric survivor/ex-patient movement, and the autistic community. While I’m not officially recognized for any of this, it accumulates into a wide-ranging bunch of knowledge that sits in the back of my head and informs everything I do.
Yet when I talk about autism or disability rights in general, people quickly reduce everything I’m saying to a product of my own experience and only my own experience. They brush aside and ignore all that other experience and the wide variety of worldviews I’ve been exposed to, and assume that every ethical discussion I get into is rooted in my experience and mine alone, or even my real or imagined neurotype in the so-called spectrum and mine alone, rather than my opinions having any merit for other reasons.
So it’s not just professionals we don’t get to be. It’s anything that acknowledges our ability to gain significant knowledge from outside our own experiences. And people say we are the ones who can’t take others’ perspectives.
Ballastexistenz 
This is tangential as usual, but while you may not be officially a professional, I find you to be sort of a journalist of some kind, in the best sense of the idea that blogs are producing the ‘new independent journalism’ or whatever. You research stuff (apparently through both voracious reading and real-life observation), you have ideas that look at things in surprising ways, you write, you raise people’s awareness. It should be obvious to any reader that this is not just someone’s random thoughts and feelings (as my blog is). This and your other sites are serious professional writing, and the closest word I can find is journalism.
Off to read Joel’s post, now.
I do put out information, but as Larry pointed out recently, the autistic community would be kidding ourselves to believe that (a) we’re saying anything particularly new, or (b) we’ve got a lot of exposure beyond a fairly close-knit community.
Even in areas of the autism community that are different from the ones we generally inhabit, we and our ideas are unfamiliar to a lot of people. And most autistic people in the world have never heard of us. We’re a small Internet-based community.
Not that this negates what we’re doing, but it puts the size of what’s going on here in perspective. There are a lot of autistic people with a lot of ideas and talent, but that’s still only a small and relatively uninfluential number at the moment.
Well it seems to me there are autistic professionals and professional autistics, and the professional autistics probably get listened to more.
Some people manage to be both, I guess Temple G is both a professional in her own right in a non autistic field and a professional autistic on the circuit.
There are some autistics whom I fear are professionals only because they are autistic, and others who are professional in there outlook and not particularly autistic in there profession.
Me I would like to be a professional in autistic education, which is why I am doing the degree,
However I am currently annoyed at this upcoming study weekend that they have chosen a “profesional autistic” to do the zoo exhibit part. I am hoping I will be able to be subversive at the study weekend if I can avoid melting down, and to distribute some useful links for the other attendees to our blogworld, neurodiversity, autistics.org etc.
My DVD is an attempt to reach a wider world than the blog world, but I don’t think it has a lot of chance right now, with sales in 10’s rather than hundreds, and all the while the spam of those who are less proffessional in there production, but more so in the distribution will overwhelm my voice in that world.
Makes me wonder how the Stephen Shores of this world make it. What has he got that I don’t have?
Maybe nothing being said here is new but there are things that it takes a long time to “get”, like in that “mourning has broken” article where he kept saying he understood a little bit of something but he “didn’t get it yet” until finally he woke up.
Unfortunately, it’s true that the audience is small… Although at least you have been on NPR…
How many of us are in a position to do something about increasing awareness? My professional life is outside of the autistic community, so I do get the chance to pass these infomation and web-sites to others outside, but… not being an influential or connected person, this is a very small impact, if any. (Also, because I don’t necessarily seem all that autistic to people who don’t know me closely, I had to decide whether or not I was going to tell people that I had a personal reason invested in this. As was already pointed out, this is a much bigger dilemma for people in some other fields than it was for me.)
I was thinking about parallels with the immigrant rights / immigration reform movement, which is another area where I try (admittedly in small ways) to help raise awareness. It’s not enough for immigrants to say “we need a chance, we need to be treated as people.” In order to influence more of the american people, there would have to be people in the crowd who ‘look like they can vote’ (that means, white and black faces, not mestizo or asian), saying “these people, my neighbors, deserve fair laws and decent treatment”. This is a sad reality, and so far I don’t see it happening, I don’t see many of us native-born americans stepping up to support the immigrants.
So in the same way I wonder how much will people listen to autistics saying “we are people, we deserve the chance to exist and contribute to society”? But on the other hand would it betray some tenet of self-advocacy to attempt to get big-name NTs (Sigourney Weaver???) to help make awareness? The pro-cure groups have all kinds of big-name support… what can be done to compete with that?
But we shouldn’t have to depend on others to confirm that we are people, no more than immigrants should.
Sadly, that tendency — of folks wanting to believe a non-disabled professional has more authority than the people who actually live with the disability — is rooted in, once again, medicalization. Because folks still look at autism and other disabilities as pathological conditions and not human conditions, they as a matter of course believe that the people with the most experience trying to “fix” the conditions are the ones who know what they’re talking about.
Let’s say you have . . . I dunno . . . appendicitis. Something most folks agree needs to be fixed — pronto. If you were to go on about your daily life insisting that you were cool with your appendicitis, that you didn’t want it fixed, and that, because you live with appendicitis and have read articles on it, you have as much experience in the area of appendicitis as a surgeon who removes appendices, and that you are as qualified to speak on behalf of people with appendicitis; you’d come off as a loon. Or at least someone in terrible denial.
Unfortunately, a lot of people — a whole lot of people — still see autism as something frightening, pathological, and to be avoided or excised immediately. And I blame cure machines and pity-sucking “news” specials for that. For the past few years I’ve participated in a “walk” for the Leukemia-Lymphoma Society. I think I’m boycotting it this year. Not because leuk is something I’m fond of, but because it seems all conditions are being lumped together and blurred with the impulse to “make it go away”. I can’t be a part of the misconstruction anymore.
There’s also, I think, a tendency to not only view us in medicalized ways in general, but use the particular ways we’re medicalized to discount our opinions.
That’s where you get:
“That’s just autistic black and white thinking.”
“Autistic people lack empathy, so it’s clear why they would take this awful stance and not understand the plight of parents and/or ‘LFAs’.”
“Stop perseverating.”
In situations where a non-disabled person would not be told these things.
There’s also more than a little of the divide-and-conquer mentality in the “Speak only for yourself, from personal experience, avoid broad political opinions” idea. It makes it possible for non-autistic people to control the political ideas about autism while claiming not to be political, and for autistic people (if we follow that pattern) to have no effective defense because all we can say is “That isn’t right for me.” (This reflects broader trends in society as well, though, towards making everything individual and personal and pseudo-apolitical.)
“There’s also more than a little of the divide-and-conquer mentality in the “Speak only for yourself, from personal experience, avoid broad political opinions” idea. It makes it possible for non-autistic people to control the political ideas about autism while claiming not to be political, and for autistic people (if we follow that pattern) to have no effective defense because all we can say is “That isn’t right for me.” (This reflects broader trends in society as well, though, towards making everything individual and personal and pseudo-apolitical.)”
This dismissing people, because they are just individuals, happens among autistics and other “patient” (sorry don’t know the right name) groups too though. I so often find I pipe up to say, “Well I don’t have that experience” to be brushed off as some sort of exception, or told I’ve been brainwashed – because the person I’m disagreeing with claims to have way more experience than me. It’s as bad as saying “I’m right because I am a Doctor”. In the internet – in my experience – like-minded people congregate, so to disagree with the main theme is unpopular. So I feel quite scared to post at times.
Yet, oddly when I ask for the vastly experienced person to provide evidence for their claim, it is so often just a bunch of anecdotes or stuff that an outsider cannot check. And they are outraged I should doubt them!
This is not just among autistics – I’ve had such experiences in the area of mental illness. But it seems worse among autistics, because of that phenomenon mentioned by Laurentius – the professional autistics – who use their position to make sweeping generalisations.
There are some things that only some people can do, such as large scale surveys and studies, because only they have access to data and resources for this. For example, showing that mercury doesn’t cause autism – it doesn’t matter that loads and loads of parents who insist mercury caused their child’s autism. This is something to be decided by epidemiological studies. Such studies can be flawed, but at least the methods and assumptions are explicit.
I’m rambling on a bit. It’s provocative and stimulating to read different viewpoints. Having experience can give insights and motivation – but it’s only a starting point.
Hopefully, you won’t mind me posting here, since I’m not autistic myself but a parent of a three year old boy. I’ve wandered over from one of the boards that Amanda(a.k.a. gtto) frequents because I’ve become increasingly frustrated by something very similar to what you’re discussing. In my case, and in the case of any parent who challenges the “autism is a parent’s worst nightmare” scenario, we are almost always given one of several “scripted” responses (Yes, NTs have scripted language too, but they usually think they’re being original)along the lines of “Well, you can’t understand what that poor mother is going through because your child is so high functioning” or “You can’t understand what that poor mother is going through because your child is so low functioning you have no choice but to accept his autism”. If we even get close to criticizing another parent, we are immediately pounced upon and shamed into silence. The general notion is “if you haven’t walked in this particular person’s shoes, you have no right to comment on anything he/she says or does, no right to criticize the mother who publicly admits to having thoughts of killing her autistic daughter and certainly no right to question the parents who found her story to be an act of courage and an inspiration to us all.” Inevitably, it is the rights of the parents to freedom of expression that trumps the rights of the children to be treated with dignity and respect. I have such a hard time understanding this position. It seems to be beyond my comprehension. The bottom line through all of this, whether you’re autistic or NT, if you’re not saying what the majority of people within the (parent dominated) autism community want to hear, then you have no right to say it. They will always find some way to discredit you-even if you have a whole lot of letters after your name.
Yeah, as a matter of fact the whole thing about “Who gets to call themselves autistic?” that popped up recently was initiated by an autistic person, and, as Frustrated points out, one who pretty much holds the prevailing opinions in the autism community.
What I often get is, “It doesn’t matter if you’ve read up on sociology and stuff, you’re still only talking about your own experiences, or you still only should talk about your own experiences.” (Whether from parents, auties, whoever.) If I was just taking my experiences and broadening them to include everyone, I’d understand that, but that’s rarely what I’m doing.
DVD? I missed that.
From where I sit, the blog community, and the tens of people buying your DVD add up to more than their numbers. If I pass a single insight on to a couple of people, who then pass it on to a couple of other people… that’s 5, or maybe 7, people whose view of the world is a little changed, and whose trajectory is a little changed. Such things multiply up, often invisibly – until suddenly the world looks slightly different.
It’s got its own website
http://shiningcityvisions.com/
However it has been turned down by the conventional publishers of autism material in the States and over hear.
I suppose I shouldn’t grumble, the substance of it, the text was on the AWARES site http://www.awares.org/conferences/show_paper.asp?section=000100010001&conferenceCode=000200010009&id=23&full_paper=1
The DVD though is much more “entertaining” if that is the correct way to speak about it, in that I have tried to be more than a talking head and the circumstancial setting of the DVD is a mis en scene and narrative in itself, as someone has said of my cryptic posts elsewhere my own “Da Vinci code”
Larry is there no way of getting the films in .wmp or something, by download, for a cheaper price? The exchange rate with the dollar is terrible for us… and only one is available in US format.