Comparative studies in “autism”

I have an irritating (according to some) tendency to play “devil’s advocate” in discussions about many things. I think this dates back to my junior year in high school when I learned the pleasures of debate in a philosophy class (gotta love the Jesuits!). More than anything, it was the admonition that some things were beyond debate – for example, abortion (remember: Jesuits) – that got me hooked. Nothing, as far as I’m concerned, is beyond discussion or debate.

Which has led me into a life of “comparison.” Comparative religion. Comparative politics. (It was, in fact, in a comparative politics class that I met my wife of 21 years.) My reading list over the years reflects this believe, as I make it a point to read books that discuss different aspects of a question or dilemma. Atheism / Religion. War / Peace. Republican / Democrat. Gun Control / NRA (and, of course, Ted Nugent ;-). Democracy / Communism / Fascism / …ism.

As I have become more and more of a comparative person I’ve also realized that I don’t have much tolerance for fundamentalism, which makes sense since fundamentalism is – by definition – “strict adherence to [a] set of basic ideas or principles”. For one thing, you can’t have a meaningful discussion with fundamentalists: they know what they know and believe what they believe and don’t really listen to what you are saying except to figure out which pre-fabbed counterargument they will use (sometimes they don’t even try that hard). The worst thing, though, is that there is no opportunity for true learning or growth for either me or the fundamentalist.

It seems inevitable, then, that I find myself thinking about autism in comparative terms and being frustrated at the level of fundamentalism that permeates all sides of the discussions and debates surrounding autism. The proverbial straw* that has brought this far enough to the front of my brain to write about was the recent departure of Michael Boll and his Autism Podcast from the Autism Hub.

To be fair, I haven’t listened to the Autism Podcast in quite some time. (Truth be told, I don’t listen to any podcasts – embarrassing, I know.) But in the wake of the dust-up surrounding Michael’s interview with Rick Rollens, I figured I should take a look through his archives to get an idea of what he has produced over the years.

What I found was an impressive collection of podcasts and interviews with people from many different backgrounds, perspectives, and thoughts on autism. Michael seems to be someone who is interested in learning all he can so that he can better understand the issues, and sharing the source of his learning so that others can do the same. My kind of guy.

But that most recent interview (which, again, I have not listened to) really got the ire up on the Hub. You can see the basics of that ire in the comments to the interview, but it went much deeper than that. As a member of the Hub, I kept up with the discussion about the interview on the Hub’s mailing list.

Though there are a lot of nuances to all the discussion, what it basically came down to was, “How dare he interview someone who is so against everything we stand for, not call him to task for it, and then have the audacity to actually publish it on the Hub? Never mind all the good things (ie, things we agree with) he has posted over the years, he spoke with someone who doesn’t share our beliefs, and shared those beliefs with the world, so he must not share them either.” Fundamentalism at its ugliest.

When I moved this site to this self-hosted location earlier this year, I also redesigned it so that it showed a wide variety of feeds and links. Yes, the sidebar includes a feed from Age of Autism (another group that is sinking quickly into fundamentalism) in addition to the link to the Hub, as well as links to neurodiversity AND bio-med autism parents.

At the time, I actually considered resigning from the Hub. Not because I don’t believe in the stated purpose of the Hub, because I do. But I knew then that I had some things I wanted to write about that would raise the hackles of some of the more “hard-core” members of the hub. Because as much as I agree with what the Hub is trying to do, I don’t always agree with how it is done. (There are, in fact, several Hub blogs I don’t read because of their incredible viciousness toward those who don’t agree with them.)

There are many topics in autism making headlines these days that generate seemingly endless, and amazingly opposite, reactions from people (Peet vs. McCarthy, anyone?). It is not my intent to turn 29 Marbles into a “comparative autism” blog, but I have the feeling I’ll be writing more along those lines in the future. I’m looking forward to some good conversations.

* Obviously not enough to make me write about this before, there has been at least one (anonymous) call for me to be removed from the Hub because of my “deference to … a loon.” To be honest, I’m surprised there haven’t been more. I’m sure there will be more in the future. And if it is the will of the Hub to remove me, I’ll respect that decision. But given a choice, I choose to stay.

19 thoughts on “Comparative studies in “autism”

  1. Club 166

    Well, comparing this post to others you’ve made… 🙂

    I think that having a variety of views out there that are well examined is a good thing (my Jesuit education didn’t come until undergrad). There is a fine line, though, sometimes between examining differing points of view and publicizing those points of view without any examination at all.

    I considered my reaction for a while before weighing in on the “Autism podcast” thing, but finally decided that the problem was that line had been crossed, and that “The Hub” was not a proper venue for the unexamined publication of certain points of view.

    I believe that “The Hub” is strong enough (and intelligent enough) to see the difference, and tolerate reasoned discussion of diverse viewpoints. But in the end that is just my opinion, and I don’t own “The Hub”.

    Joe

    Reply
  2. CS

    “Though there are a lot of nuances to all the discussion, what it basically came down to was, “How dare he interview someone who is so against everything we stand for, not call him to task for it, and then have the audacity to actually publish it on the Hub? Never mind all the good things (ie, things we agree with) he has posted over the years, he spoke with someone who doesn’t share our beliefs, and shared those beliefs with the world, so he must not share them either.” Fundamentalism at its ugliest.”

    Either you are speaking from ignorance and haven’t been following the podcast for the entire time its been on the Hub or you are purposely mischaracterizing the reaction. I don’t remember anyone saying because of this one podcast, it should be removed. I remember many of us stating it was a long established pattern for more than a year.

    To me the question is this: “Can autistic people have one safe place to go without hearing about our deficits”? The rest of the blogosphere is open and certainly concerned with our deficits.

    Let me give a hypothetical analogy here:

    Let’s say there is an NAACP Hub that had as its mantra the promotion of the acceptance and advancement of African-Americans. One non-black member of the Hub consistently posted unchallenged interviews from people like David Duke (for many of us we see no difference because David Duke and Rick Rollens, Laura Schriebner and countless others call us defective trainwrecks and speak to those that view autism only as something to be rid of) on there and he constantly talked about how the superiority of whites and the hub member never challenged it. Could that NAACP Hub member be “ACCUSED” of violating the spirit and views of the NAACP Hub? If the other Hub members protested the fact that nearly all of the interviews on the podcast were from people that viewed being black as a “bad thing” could they be accused of “fundamentalism”? Would you tell them they had to have their dignity challenged everytime they visited their safe place on the blogosphere?

    Brett, you’ve written glowing comments about a man that was personally responsible for abusing an autistic person on the Hub, but no one said anything to you about it. Perhaps what you viewed as fundamentalism is our fight for dignity and you found this ugly. Perhaps it is time to move on because you may not be comfortable, truly comfortable with self-love advocacy as Malcolm X put it. Perhaps you can support us in some ways but you draw the line at certain points that some of us do not. As long as there is a power discrepancy between autistic people and non-autistic people, there will be a need for “ugly fundamentalism” (your characterization, not mine) in protecting and expanding the dignity and opportunities for autistic people.

    Reply
  3. CS

    By the way, I offer you this challenge. Find any personal comment on any podcast where Mr. Boll speaks of the need of accepting autistic people for who they are.

    Reply
  4. Leila

    Very interesting point. As a Hub reader (and not blogger) I also cringe at some signs of fundamentalism, however, the Hub does have a profile and guidelines for the blogs it promotes. It’s not indiscriminate. The podcast blog does an amazing service BUT, like Club 166 already said, it is promoting ideas that are against the core Hub values without any critical counterpoint. It was obviously sticking out like a sore thumb…

    That said, I disagree with CS when he says that the Hub should not talk about the deficits of autism. This is exactly the stereotype that critics of the Hub mention all the time. Dude, come on. The deficits exist and need to be acknowledged, but the difference between the Hub and mercury blogs is HOW we face those problems. Here we’re looking for ways to improve lives of autistic people with respect, love, acceptance, and using effective teaching tools and relationship changes, rather than woo biomed treatments.

    Reply
  5. Brett Post author

    CS,

    You make some good points. I especially like the analogy to an NAACP Hub, it puts the question in terms people not familiar with autism and neurodiversity can relate to.

    While “fundamentalism” may be too strong of a word, what you describe is a self- (group-) imposed filtering of ideas that the group, and its members, don’t want to hear. Which is fine, if the purpose of the Hub includes that filtering of ideas.

    You ask, “Can autistic people have one safe place to go without hearing about our deficits?” The answer, of course, is yes. Not only can they, I believe they should.

    I guess I just didn’t realize that the Hub is that place.

    Reply
  6. Brett Post author

    CS,

    You say I’ve “written glowing comments about a man that was personally responsible for abusing an autistic person on the Hub.” If you can point me to the post where I’ve made those comments I’ll definitely re-look at what I’ve said.

    Reply
  7. Brett Post author

    Joe,

    I think part of what bothered me about the reaction to the interview was that there was not any reasoned discussion about the viewpoints in the interview, or the interview itself. Rather, the reaction was one of, “What is this doing on the Hub?”

    Having given it a bit more thought, I realize that the real problem with this particular interview is that the subject of the interview, and the topic, have been discussed in great length among the Hub members. The result of these past discussions was a “decision” that the subject and topic were “wrong” and not deserving of any further discussion or consideration.

    Like the “pro-choice” view of abortion in a debate at a Jesuit high school, some things are apparently, in the view of the Hub membership, just not open for debate and shouldn’t even be mentioned. Which is fine if, as CS describes, the Hub is a “safe haven” for autistics with content meant primarily for consumption by Hub members.

    But it is not fine if the goal is to help the rest of the world better understand what autism is and what it means to individuals and society as a whole.

    Reply
  8. Brett Post author

    Leila,

    Thanks for the comments. It’s nice to hear an “outside” voice, someone who is interested in what the Hub has to say but who isn’t invested in it as a blogger.

    Reply
  9. Ed

    I think discussion should be encouraged with some understanding that the content of that discussion does not limit the views of autistic people who have traditionally had so few opportunities to voice what we believe.

    If there needs to be some fundamental guidelines that help to ensure that our voice is provided a place within our own advocacy, at this point in time I want to help ensure that.

    David Duke’s voice and the voice of so many other’s of the same mind, is an oppressive voice that NAACP member’s are accustomed to being fearful of. They haven’t been given the same rights and opportunities to voice what they think as advocates for their own defense. Therefore to say that they have the right to speak up against their oppression when they have been taught accurately that doing so would cause bad consequence’s, is actually what promotes the continuation of what prevents their rights from being exercised.

    I don’t think anyone can claim that communication deficits or difficulties need to be accepted within part of how autistic advocacy is promoted when they are at the same time involved with allowing for the oppression of our voice.

    Reply
  10. cs

    Leila,

    Everyone has deficits but that shouldn’t be restricted to just autistics.

    As far as woo and mercury talk is concerned, I’ll defer to Joel’s post as I agree with him. If the anti woo blogs is the common ground you have with the Hub, great! But that has little to do with autistic self advocacy, and this may be what makes you feel uncomfortable with some blogs.

    Reply
  11. Leila

    CS, we all have a tendency to perseverate on our favorite subjects… But again, as a reader, I like to see a variety of issues being discussed. The self-advocacy part is greatly represented by folks such as Amanda, Joel and Bev, but the autism science is also fascinating to many. Rejecting bad science that hurts autistic people IS advocacy. Some autistic adults may not be interested in research on autism as much as the self-advocacy alone, but that doesn’t mean ALL autistic adults do not wanna talk about it. In any case, there’s a long list of blogs in the hub and I don’t see why they all have to talk about the same thing.

    Reply
  12. CS

    Leila,

    I whole heartedly agree “Rejecting bad science that hurts autistic people IS advocacy.” I have nearly a million youtube views to show I agree. I didn’t mean to imply that it wasn’t advocacy, but I’m afraid, and I’ll have to agree with Larry and Joel in their sentiments concerning the topic of vaccines. Good science, done the proper way isn’t always good for autistics either.

    “but that doesn’t mean ALL autistic adults do not wanna talk about it.”

    I agree, and refer to my million youtube hits on the subject as an example that certainly bolsters your statement.

    “The self-advocacy part is greatly represented by folks such as Amanda, Joel and Bev, “, I agree and I’m happy that some of them have included my videos on their webpages because they are very popular bloggers.

    Others of us though don’t have the communication style that appeals to a large number of readers. Some of us are a bit more “feral” as Larry put it once concerning his own style at times. I’m glad we are included as well, though some might think that our style is a bit harsh, perhaps even lacking in an acceptable mode of “social” writing.

    “there’s a long list of blogs in the hub and I don’t see why they all have to talk about the same thing.”

    I didn’t mean to imply that they should.

    I try to read all the blogs, especially the ones by other autistic members on the site. I assume that most of them work as hard as I do at accommodating the majority’s communication style.

    Brett said:

    “If you can point me to the post where I’ve made those comments I’ll definitely re-look at what I’ve said.”

    Brett, I’ll let the person who told me do that because if I do, I’ll be betraying their confidence. However, if that person asks me to, I will. I’m not sure they feel very safe to be able to come forward.

    Reply
  13. CS

    I especially like what Joel stated here:

    “I’m worried even about some people associated with “our side” in the blogosphere and internet as a whole – as I read their writings and talk to them, I find that they may be less concerned with neurodiversity and disability rights than scientific correctness – that they wouldn’t be opposed to what I, and many other autistics, would consider “unethical treatment” if that treatment’s development met the requirements of rigorous scientific work. Such “friends” are no friends of mine.”

    I also especially liked what Ed wrote here:

    “I think discussion should be encouraged with some understanding that the content of that discussion does not limit the views of autistic people who have traditionally had so few opportunities to voice what we believe.”

    Ed by the way is someone I personally would add to the list you gave, but I don’t think Ed would consider himself a “popular” blogger but he has a lot of damn good things to say and certainly says them in a polite manner that I wish I could emulate at times without having to reject my own communication style.

    Reply
  14. Club 166

    …Like the “pro-choice” view of abortion in a debate at a Jesuit high school, some things are apparently, in the view of the Hub membership, just not open for debate and shouldn’t even be mentioned. …

    Rather than compare some of the stuff Boll presented as being analogous to abortion, I would compare it to someone coming into an Astronomy forum and repeatedly putting forward a heliocentric view of the universe.

    It’s not that everyone collectively said something is off limits, it’s that those things HAVE been considered several times in the past, the fallacies behind such arguments have been considered several times in the past, and there is a collective feeling that they shouldn’t have to be reconsidered over and over again.

    Lay on top of that the ethical considerations of human dignity for all (including autistics), and I think that most people would feel that throwing the same hurtful things out there repeatedly provides no furthering of understanding. It just serves to propagate ideas that at their core disrespect (autistic) individuals.

    Joe

    Reply
  15. hj

    “As a member of the Hub, I kept up with the discussion about the interview on the Hub’s mailing list.”

    Brett: Why didn’t you comment at the time?

    Reply
  16. Kassiane

    It was ROLLINS, of Tsunami fame. I mean, can you get much more offensive?

    This isn’t the first time that Autism Podcast interviewed, uncritically, someone who has basically told people like me to die in a fire.

    For comparison, when I was interviewed I felt like I was constantly defending my right to be who I am. It was subtle but it was there. Just sayin’…

    We don’t all have to agree on everything, but basic dignity, that isn’t such a stretch is it? If that means that Rick Rollins isn’t granted a platform, so what? How many places are Amanda, Joel, Larry, Ms Clark, me, and other autistic advocates ridiculed, hated, doubted, and flat out not welcome?

    Reply
  17. CS

    “While “fundamentalism” may be too strong of a word, what you describe is a self- (group-) imposed filtering of ideas that the group, and its members, don’t want to hear. ”

    Brett, I promise you my web browser works on sites not related to the Hub.

    Reply
  18. Alex Plank

    I agree with Kassiane’s take on Rollens (spelled with an e). He’s an incredibly offensive person to interview for multiple reasons.

    By the way, podcasts are so 2006 that you shouldn’t be embarrassed. 😛

    Reply
  19. Amanda

    Strange to see myself being described as someone with a more acceptable communication style. I’m so often described as angry, negative, whatever. Some people see me as that though, and some can’t even imagine how to see me that way. I don’t know what the difference is between the two sets of people, but some will swear up and down I’m nasty and angry and all kinds of vile, and the rest can’t see that in me at all.

    I can’t even tell what the difference is. I can be raging mad and get told how cool and collected my writing is, and I can be totally calm and be told that I’m being horribly mean and vicious and intolerant.

    As such, I can’t even tell if I’m one of those bloggers Brett can’t even read anymore or not, because I have no clue if he gets that weird illusion of vicious intolerance off me or not.

    So I wouldn’t say I have a writing style that’s taken consistently as civil and acceptable. But I can’t say what makes people take it in some other way.

    I’d refer people to my post “I’m the monster you met on the internet,” but I can’t because my blog is down right now.

    Anyway, Brett, if you want to question various viewpoints, that seems fine to me. But I’m seeing the next post you made, and it’s not even a critique of a position. It’s a critique of a phantom. You’ve known a lot of people for a long time who hold the views you’re critiquing, and I am stunned that you view us in such a simplistic way.

    Maybe it’s because some impression you got has scared you away from actually reading people in depth.

    Maybe the people you see as intolerant to everyone else, aren’t actually, maybe that’s just your impression.

    Maybe you haven’t come close enough to shatter that impression.

    I don’t know.

    I just know it’s really weird to see you, who have had long conversations with so many of us about these exact issues, revert to describing outright caricatures of our views as if they are fact. And then resorting to the “well it’s the logical conclusion of this view” thing if it turns out you were wrong. It’s of course very hard to argue about that, because the “extension” is out in the air. Maybe our views take a dip downward and avoid that extension altogether.

    As far as someone’s comment about deficits goes..

    …I don’t think there’s anything wrong with talking about stuff we have trouble doing. I talk about those things all the time, and I don’t see anyone complaining about that. It’s all in how you view them, not in mentioning them, I guess.

    But this whole thing is utterly confusing to me. Especially watching someone I thought knew us better, represent us the way he is. It’s just strange.

    Reply

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