Where’s Autism in the Aspen Ideas?

Over the past four days at the Aspen Ideas Festival I watched Lu Chuan‘s movie, City of Life and Death, about the massacre of the people of Nanjing,  heard the wonderfully inspirational Jane Shaw talk about Our Moral Imagination, saw a film clip of Lixin Fan’s Last Train Home, a documentary about migrant workers trying to get home to see their families and Louie Psihoyos‘ latest, yet to be named, documentary about  “an unlikely team of activists who come together to solve humanities biggest problem… ”  I have heard about the evolving interface between mankind and machines, the evolution of design and why theatre and the arts matter.

The most interesting sessions have been those that talk about either values or the arts.  Leigh Hafrey’s discussion What is “Values-Based Leadership?” and Jane Shaw’s Our Moral Imagination as well as  Elaine Pagels, Who Wrote the Book of Revelation – and Why Do People Still Read it?   and Theater That Matters with Anna Deavere Smith, Julie Taymor, Gregory Mosher, and Oskar Eustis were all provocative and interesting.

As much as I have enjoyed this year’s festival, I was saddened to see there was not a single presentation that had anything to do with autism.  In fact the word “autism” was only spoken once in the many sessions I attended and that was in reply to a question asked during the presentation by NPR entitled, “A Fish Tale”: Is Lying Okay?  The NPR journalist who covers neurology, Jon Hamilton said, “People with autism have a terrible time lying, which is why they have trouble in society.”  There were some mutterings of surprise in the audience and then everyone moved on.  In fact the conclusion of that presentation seemed to be that lying is necessary and therefore part of our evolution as a species, which seemed like an amazingly bad idea.  It makes me all the more hopeful that Henry Markram’s Intense World Theory for Autism is correct.

Enjoy this photo montage of the highlights.  When I began taking photographs of Pervez Musharraf, I was actually followed by two secret service, lending a cloak and dagger feel to the whole adventure!

Pervez Musharraf

Barbra Streisand

Katie Couric

Jane Shaw – Dean of Grace Cathedral

Louie Psihoyos – Director of Academy Award Winning Documenary, The Cove

Emma (my favorite “important person”).

 

37 responses to “Where’s Autism in the Aspen Ideas?

  1. What do you think it would take to include autism in such an event? Because it seems a natural fit, for when I think of creative thinking and new ideas, I naturally think of autism. I wish we could leave behind the medical, the epidemic, the “defect” perception that needs to be “cured” and embrace the holistic side of autism. I mean, how often do you hear “think out of the box” muttered? Good grief, our kids are the original out-of-the-boxers. So many speak of thinking out of the box as an ideal, why can’t people see our kids are the living embodiment of that very ideal!

    • I think the autism = tragedy model is so embedded in the general perception regarding autism, the program directors have a difficult time persuading their various sponsors that this issue has anything “new” to contribute to the subject. I have been trying for two years now to get them to do something on autism, but have hit a wall each and every time. But I have some ideas and will be writing about them in future posts. I loved this comment. One of the questions I want to throw out is this: if you could put together a panel of speakers who would they be and what would the discussion be about specifically? Would love to know, Charlotte, so please comment back or shoot me an email.

      • I’d actually love to have a discussion that addresses autism “across the life span” and look at all the variations of how this manifests using the many autistic advocates who speak about autism today. For example, not everyone is going to be a Temple Grandin, and it’s unfair to somehow subject our children to the pressure of being a ‘certain way’ including becoming visible autistic advocates. So I’m seeing a good percentage of ‘secret agent ambassadors’ — those who choose not to disclose their autism to the public but who are still willing to share their life trajectories and how they’ve navigated the strengths and challenges of autism.

        • Hi Jane, so if you could plan a panel of speakers and presenters, who would you have and what would they talk about. You’ve mentioned the across a life time thought, but can you be specific? Who exactly would you like to see and hear from?
          I’m trying to get a wide variety of ideas, before putting together a proposal. Go for the ideal! Would love to hear your thoughts.

      • Wow! You don’t ask for much, do you! 🙂 I will indeed be thinking about your question and will send you an email with my thoughts. I will say now that my first, “out of the box” idea made me wish I was a film director! Details to follow!

        • Okay, so that was a total tease!!! I read that and thought – oh, oh a film, you’re talking my thoughts exactly. This is what I’ve been thinking about too! How better to captivate people, get them to think and perhaps change their views, or at the very least, engage them in beginning a conversation. Someone said to me, well it’s good your involved in the conversation and I said, “What conversation? It hasn’t even begun yet. That’s the conversation I’m interested in hearing, the one that involved Autistics!

          • And a tease I am! 🙂 Actually I am work and on an iPad so my freedom to write my thoughts are severely impaired at the moment but I want to buy a video camera and do a documentary and Include Gareeth! 🙂

    • I totally agree. I find it ironic that we throw around sentences like, “once you’ve met one child with autism, you’ve met ONE child with autism” yet we can’t help but look at statistics and then trying to force-fit our kiddos into any one of the various boxes.

      Also: tragedy sells. Hate it but true.

  2. The notion that autistic people have a terrible time lying and that’s why we have such a hard time in society is absolutely moronic. I know in some social skills programs they do teach lying as a social skill and that to me is just a sad commentary on society. Why we have a difficult time in society is much more complicated than being bad liars.

    I could lie if I choose to I think but I believe truth is binary and there are not degrees of truth. All those lies people label as white in order to excuse telling them are just a slippery slope in the devaluation of honesty in society. That my view of this is patholigized as an example of black and white thinking is even more aggravating to me.

    The default setting in my brain no matter how much I learn about human behaviour remains set to literal so I always initially react as if something is literal and true only to find out a surprising amount of time that it was neither. Despite having an IQ that can’t be measured I wind up feeling quite often and can’t help but think in a word where people said what was true and meant what they said how much easier life would be not just for autistic people but everyone.

    A number of years ago I started an active campaign to influence the people in my life to view truth in a binary way and I actually did a few neurologically typical converts. I admit they were people who already had high morals and valued honesty but they still would justify a white lie. They just hadn’t put much thought into the overall impact that such socially justified lies have..

    People come to me a lot for my opinion. I always remind those I think might not quite be prepared for the unvarnished opinion I might supply of my position on truth and a surprising number of times the answer back was that’s exactly why they were coming to me. Of all the people they could think of I was the one person they could rely on for a truthful opinion and that’s what was wanted.

    In the social skills examples it is often a shopping situation. When your friend asks if this pair of pants makes their posterior look huge you are supposedly supposed to say that it doesn’t. If they actually are a friend isn’t that a ridiculous reply? They will buy an unflattering pair of pants partially on your opinion and look hideous in public. How is that friendship? Is it really the autistic population that is flawed in this regard?

    • Gareeth! I LOVE this comment from you. And to address the last first, YES! What kind of friend allows you to go out into public wearing something hideous that accentuates your large behind?
      I was appalled with the Lying session and the light way in which it was presented as though it were all just great fun and wasn’t this interesting, but not so interesting that we should treat it seriously. I think the way we neurotypicals lie is hugely problematic and one could argue that it effects every aspect of ALL our lives, from foreign policy to domestic policy to our court system etc.
      So let me put the question to you, if you could put together a panel of speakers who would present and discuss something autism related, who would be on the panel, or if you don’t want to name names, what would the topic(s) be and what types of people would be on it? If you could set up a whole series of sessions, what would they be? What would you want the mainstream public and press hear and learn about autism? If you want to email me instead of commenting here, do: emmashopeblog@gmail.com

  3. I don’t mind commenting here. I think I would want to address some of the longstanding myths about what it means to be autistic that still harm the autistic population. You mentioned one of them recently as far as empathy goes but there are many others.

    I would want the mainstream press and society in general to understand that if they didn’t view autism as a tragedy they might be open to realizing that some of how we think actually could be valuable. A society with more people like myself wouldn’t necessarily be a horrible thing I don’t think.

    I would want them to realize that not being able to do something isn’t the same as not wanting to do something. It isn’t a choice. Under extreme stress I become non-verbal and the number of patronizing remarks like “Oh are we not talking today?” doesn’t help much. That’s just one example of course.

    I would want it understood that you don’t cure autism by eliminating autistic behaviour. Those behaviours have a function for the most part and if you eliminate them all you might just wind up with something closer to programmed flesh and blood robot than the autistic human you started with.

    I would want it understood that obsessions and perseverations are not necessarily a bad thing. If two people share some of those the possibility for a connection exists.

    I would want them realize the impact they have on existing autistic people when terms like epidemic and tragedy are used and how we feel about the fact that one of the primary goals of one of the most visible autism group in North America is the development of a prenatal test so people like us could be prevented.

    I would want them to realize that autism is by it’s very nature developmental and pervasive. No matter how high functioning someone may wind up seeming there are still areas that they could use support in throughout that life span to maximize their ability to be a useful and productive member of society and artificial cut off points for that help based not on the degree of impairment the actual causes but on how you score on an IQ test don’t serve anyone’s best interest.

    On the pervasive side of things I would want people to realize that if autism could be cured you would also be curing that person of being them. There is no non-autistic me. Autism by it’s very nature shapes how you see and interact with the world and that shapes the person you become.

    There’s probably more but that’s all that comes to mind at the moment.

  4. Two sessions:

    Film: Wretches and Jabberers. Have Larry and Tracy there, and maybe Doug Biklen. Larry and Tracy will bring typing helpers, so that makes it cool. Sometimes they bring their international friends. This is a good show. They know how to do this.

    Another separate panel: Markram v Simon Baron-Cohen. Have a Representative who is the person who invented or is the CEO of Autism Speaks, to be fair, maybe… v. Ari Ne’eman representing Autistic Self Advocacy Network. Temple Grandin, because, famous and cool. Have me too, of course. Cool but not famous. Six people, balanced. I am not vs Temple Grandin but I am like, real life, you could meet me, I could be a lot of people’s kids grown up. So that is the balance.

    Tada! Two awesome sessions for Autism.

  5. Or wait, another one could be Autistic Artists. You can have Amy who is a Poet, Larry who is a painter, etc. If they wanted it like this I could think this out. Musician…

    • Yup, this is good too. I like the idea of presenting them with a wide range of different ideas, covering everything from policy to the arts to science, education. I’m also thinking there’s a huge opportunity here to discuss society’s values and how this is being completely overlooked when it comes to autism.

  6. Okay, kinda feel like I am listening in on a conversation but really, really like what you said about the idea of discussing society’s values. Very important.

  7. All wonderful ideas! I will be first in line to buy a ticket! :O) Thanks to Gareeth for pointing out how idiotic that statement about lying was. I gasped out loud when I read he had said that….yes, there are so many myths out there that need to be debunked! You are all very inspirational!

  8. It is a devastatingly debilitating disability not to be able to lie “properly,” of course. Imagine the unfair disadvantage such a one would have in trying to go into politics. Impossible. Might as well not be a full citizen!

    • Oh but I don’t want to take this comment down. I completely agree because even if a politician doesn’t actually lie, there is so much dishonesty in with holding and repressing things, which is also a kind of lying. But our society feeds that beast as well with it’s crazy standards and ideas about what a politician should be and how they should behave. Look at the whole I never inhaled. That was classic politicalese.

  9. Wait, don’t post that one. It’s unkind. I take it back. Probably some political operatives do not lie even though they are able. It just does not seem like a majority stance. OK over and out for now.

  10. I’m actually a she not that it matters. My name was the alien name I made for myself as a child (a combination of GARgoyle and teeth- not quite sure why I thought an alien would have big teeth but….) When the internet came around it seemed the only logical name to use on it as well. (The lack of imagination is one I missed from my initial list) I lined up my marbles and coins when I was young nicely meeting the criteria for playing “wrong” what observers never can see is what goes on in the mind of the observed at that time.

    As far as what Ibby said about the the devastatingly debilitating disability and politics goes – sadly politics is one of my passions but I gave up trying to be involved on any formal organized level because the amount of deception and lies involved in even the mundane aspects of that job would quite literally make me ill. People who know me well pretty well laid it out that the most I could hope for was a life in the back room as a “policy wonk” or speech writer but ethically I couldn’t see writing policy I knew would be nothing more than a platform to get elected on, or a speech for someone who would lie.

  11. One of the main reasons I would want to be there myself explaining some things myself, and maybe ideally with you yourself Ariane, in that second one I made where it is a panel of all society, (Markram vs SBC to start) is because I think it is VITAL to show how researchers and fundraisers/policy folk and Autistic adults and families of younger children are not natural enemies–in other words, it is downright unnatural how they are currently being put at odds and failing to work together–and we can construct a better world in which things are the way they ought to be. And by the way, society members without children, or all different kinds of children, are also good allies. I do believe this is exactly the kind of social problem the Aspen Institute would care to be involved in solving.

  12. Gareeth– that name is cool. Love the explanation! I think you might enjoy NGO work because you don’t have to lie, you can be for real, being passionately involved with a very particular individual cause in politics such like Ari Ne’eman with ASAN. He never has to lie, because he just says the same things in a narrow range, and nobody expects him to do otherwise. I believe this is the case with much work of that sort. Isn’t it weird how moral and emotional things really can quite literally make us ill, and cause pain? I think people don’t know how literally we mean “literally” sometimes. Literally!

  13. Well I am on the board of a non-profit but it is unpaid. So far Canada doesn’t have a position similar to Ari’s. I did respite care for 24 years and I did care about that but now physically that is beyond me. I didn’t have to lie to do that either and although it was underpaid for my level of education I felt it was important work and had value beyond the dollars and cents. Was also a field where having some type of “disability” yourself can be considered an asset.

  14. Pingback: It Finally Happened! | Aspen Post

  15. Here is one of the panel members I would select: http://www.youtube.com/watch?v=JnylM1hl2jc
    Another would be E from Third Glance
    Laura Nagel
    AspieKid
    I’d select aspies and auties from different areas of expertise.

  16. Link probably didn’t work, sorry.

  17. I apologize Gareeth…..in my comment I should have said I gasped out loud when Jon Hamilton said that comment about lying…not “he”….as I didn’t mean you. 🙂 I love your comments and have found you to be very inspiring! 🙂

  18. Pingback: City of Life and Death | EZ Entertain - Greatest Flicks Of All Time

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