The third and final installment from the Autism Society of Wisconsin conference is the Saturday afternoon keynote by Eric Courchesne, director of the UCSD Autism Center of Excellence. His talk was called "The Neural Origins of Autism: Evidence of Prenatal and Early Postnatal Brain Growth Abnormalities."
[Note - I'll be calling him by his first name, as I did with Paula Kluth and Temple Grandin, though in each case the more formal choice would be the title "Dr."]
In contrast to Temple Grandin's wide-ranging themes, Eric's presentation built a thesis. He started by referring to a 2009 report from the Information Centre of the UK’s National Health Service that found an ASD rate of 1 in 100 among adults in England, using modern diagnostic standards. This converges with the 1 in 110 rate for children in the US as published by the CDC this past December... in other words, he was taking the stance that the autism "epidemic" has much more to do with diagnostic changes than with a true rise in the condition. (The England study has been somewhat controversial, and Eric was careful to caution that it needs to be replicated before we can give it too much weight.) Come to think of it, Temple hinted at a similar position in her presentation: "Geeks and nerds have always been here... Who do you think made the first stone spear? It wasn't all the yakety-yaks around the campfire!"
Eric went on to point out that until recently, much of the brain-scan research in autism has been done with adults. But if you want brain research to illuminate the "why," you need to start much earlier, back to the age at which atuism first begins to be apparent. So he and his wife, fellow researcher Karen Pierce, have been working on brain studies with little tykes.
One set of results focuses on brain size. It's well-established that people with ASD have unusually large brain size. Courchesne et al (2003) looked children with autism or PDD-NOS and traced their head circumference (HC) records back to infancy. The findings: birth HC of the infants with ASD was smaller than the norm, but shot up to a mean at the 84th percentile by 6-14 months. The children with autism had a greater increase in HC than the ones with PDD-NOS. [This rings true for our Joy, by the way. Her head was at the 70th percentile shortly after birth, 95th percentile by six months, above the 97th by 9 months, and has never gone below that figure since. Rose had a sizable head too, 90th percentile at 12 months, but back to the 82nd percentile by 2 years of age.] Anyway, Eric listed 7 other studies in support of this finding, starting with Dementieva et al 2005.
The next work he described involved doing sleep-MRIs on one-year-olds. To get the right group of little ones to scan, Eric and Karen have set up a network of primary care physicians who do a screener at age 12 months to identify children who show early signs of ASD. Those identified as at-risk then become potential research participants. This network & screening impresses me as a two-in-one coup, by the way -- not only does it serve the research, but it gets the kids screened! I've learned via LEND that there is surprising hesitation in the pediatric community when it comes to implementing standardized developmental screening, whether for autism or just in general.
Anyway. Not only are these MRIs confirming large brain size in children with ASDs (particularly frontal & temporal lobes) but are also showing that autistic-tyke brains are responding differently to normal speech, with activation on the "wrong" side of the brain.
So where are these brain overgrowths coming from? Is it more brain-cells, or something else? Cadaver research on small children can be a hard thing to think about because there's always a tragedy underlying, but generous research donations by bereaved families has allowed some study that actually counts brain cells -- with the astonishing result that the brains of children with ASD had an average of 55% abnormal increase in the actual number of cells!
AND. Eric drove this home hard. Almost all brain cells are generated PRE-NATALLY, second & third trimester. The overgrowth in numbers of brain cells cannot be caused by vaccines.
So why don't symptoms show till later? He showed a fascinating slide illustrating human frontal cortex development. Even though newborns have all their brain cells, those cells are small and have few connections. But between the ages of 6 months and two years, the cells themselves grow and circuit formation goes wild. At that point, the difference in number of brain cells and how they connect begins to really matter.
Eric's lab is currently studying the layers of the cerebral cortex, a process that he expects will lead to identification of genes that are implicated in layering defects. He spoke of his hope that within 6 or 7 years, that the understanding of the brain-basis of autism will jump by leaps and bounds. As he made this prediction, he became choked with emotion... "I have tremendous hope," he said.
When Eric talks about the importance of brain-based autism studies, he also speaks very strongly about the massive waste of research dollars that have been poured into the generally-discredited vaccine causality hypothesis. This infuriates him. And it's not just a casual opinion with him. It's very personal. You see, as he climbed the steps to the stage, he had to support himself with his arms because his legs don't work quite right. He had polio when he was four years old, in the last epidemic wave before polio was essentially wiped out.
By vaccines.
He got a standing ovation at the end of his presentation.
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Note: sorry that my referencing of particular papers fell off after the first bit of the presentation. I thought I took better notes than that, but apparently not. Please be assured, though, that every one of the findings was backed by peer-reviewed, published articles, and that Eric took great care to mention the extent to which his work has been replicated. Unlike, and he made this point very clearly, the work of a certain Andrew Wakefield, recently retracted by the Lancet.
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Thus endeth my conference reporting. I hope you can see why it seemed important to me to share all three of these presentations! Thank you for hanging with me. I think that as LEND winds down, we'll be returning to our usual Joy-based programming here on Elvis Sightings.
Showing posts with label conference. Show all posts
Showing posts with label conference. Show all posts
Wednesday, April 7, 2010
Tuesday, April 6, 2010
Conference Report, Part 2: Temple Grandin
Before the Autism Society of Wisconsin conference slips entirely out of sight in the rear-view mirror, I want to report (as promised) on the second keynote, Temple Grandin. [Note - I'll be calling her by her first name, as I did with Paula Kluth and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]
Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...
The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.
Here are some nuggets from the presentation:
Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).
My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)
She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)
Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.
One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.
Our project is for our child to be successful.
Yes.
Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...
The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.
Here are some nuggets from the presentation:
Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).
My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)
She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)
Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.
One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.
Our project is for our child to be successful.
Yes.
Friday, March 26, 2010
Conference Report, Part 1: Paula Kluth
I almost feel like I should say "Didja miss me?" yet again. It's been a very full week since returning from the Autism Society of Wisconsin (ASW) conference a week ago Friday. Many spinning plates, and per usual many are Joy-related, from conversations about inclusion at church to the fact that we've got her IEP meeting this afternoon to plan for kindergarten in the fall.
But I promised some conference-reportage!
One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]
Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.
One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!
Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...
Really, who among us wants someone to come along and try to "change our behavior" anyway??
But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"
So, what does seem to help? In very broad strokes:
Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!
For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.
Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:
For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.
But I promised some conference-reportage!
One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]
Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.
One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!
Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...
- someone drags me away?
- someone enforces an immediate negative consequence?
- someone yells at me enough?
Really, who among us wants someone to come along and try to "change our behavior" anyway??
But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"
So, what does seem to help? In very broad strokes:
- Being surrounded by people who care
- having meaningful social relationships
- being in a comfortable setting
- having an engaging curriculum (driven by novelty and joy, as opposed to "death by sight-words")
Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!
For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.
Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:
Some kind of help is the kind of help
That helping's all about
And some kind of help is the kind of help
We all can do without!
For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.
Sunday, March 21, 2010
Back from a Conference
Didja miss me?
I guess I didn't tell you where I was going, or even that I was going! I just spent the past three days in Green Bay, Wisconsin at the Autism Society of Wisconsin (ASW) annual conference.
JoyDad got to have single-dad duty for those three days. He did great. Rose was weepy the day before I left, but once I was gone she carried on in fine form. I understand that Joy was a little bit of a handful, which I like to think may have had something to do with missing me. Maybe?
When I got home last night, though, she was in a cheerful and chatty mood. We sang Old MacDonald, and she gave me some gorgeous "oink, oink" (you know, the snorty-thing with the cute wrinkled up nose) and a "neigh" or two, and some nice tiger roars.
What, you don't have a tiger on your farm? Well, our farm has a nice noisy one!
The conference was rich and full. I think there are three blog-posts coming here, one for each of the keynoters, 'cause they hit a trifecta of excellence:
Stay tuned!
I guess I didn't tell you where I was going, or even that I was going! I just spent the past three days in Green Bay, Wisconsin at the Autism Society of Wisconsin (ASW) annual conference.
JoyDad got to have single-dad duty for those three days. He did great. Rose was weepy the day before I left, but once I was gone she carried on in fine form. I understand that Joy was a little bit of a handful, which I like to think may have had something to do with missing me. Maybe?
When I got home last night, though, she was in a cheerful and chatty mood. We sang Old MacDonald, and she gave me some gorgeous "oink, oink" (you know, the snorty-thing with the cute wrinkled up nose) and a "neigh" or two, and some nice tiger roars.
What, you don't have a tiger on your farm? Well, our farm has a nice noisy one!
The conference was rich and full. I think there are three blog-posts coming here, one for each of the keynoters, 'cause they hit a trifecta of excellence:
- Paula Kluth, who gave a daylong workshop called The Problem With Behavior Problems
- Temple Grandin (I felt like such a fan-girl... I got to meet her! She autographed a book for me! Swoon!)
- Eric Courchesne, neurological researcher, on the state of the art in autism brain research and implications for what does (and does not) cause autism
Stay tuned!
Saturday, July 18, 2009
Library Conference
I'm back again -- didja miss me?
I didn't mean to take quite this long to post, but between last weekend's conferencing, the regular daily plate-spinning, and the bounty of the plantation (have frozen umpteen quarts of green-beans, and canned 10 quarts of applesauce and a double-recipe of cherry jam since last we spoke), my poor blog has gone sliding down the priorities.
However. The library conference needs reporting!
Though the pickings were a little slim for my data-library specialty, I did manage to find relevant vendors in the exhibit hall and useful sessions to attend. I also, wonder of wonders, connected up with EVERY ONE of the people-meetings I'd arranged. It really felt in some ways like another reunion weekend, except instead of college friends, it was high school buddies, a housemate from my post-college years in Mennonite Voluntary Service, a college-library colleague whom I hadn't seen since JoyDad & I made our last cross-country move 11 years ago, a data-librarian colleague from social-science data conferences. (Yes, they have those. Who knew?) And then the wonderful hospitality of UncleDO & AuntLO, who treated me to a grilled-out dinner on their rooftop deck Saturday night, with a spectacular sunset and view of the twinkling city skyline as the darkness fell. Ahhh.
The very last session I attended at the conference was something just for me. It was a session called "Serving Students Along the Autism Spectrum." The program was aimed particularly at school libraries, but it sounded to me as if the attendees represented a broad range of libraries -- and also that some of the more coordinated efforts are happening in the public libraries! Which makes sense, because school libraries are often deemed expendable in budget-cutting times, and we're surely in budget-slashing times these days... many school librarians are just trying to keep their heads above water. But I digress. At any rate, the number of attendees caught the presenters off guard, to the point that they ran out of handout packets!
The session itself had a "what is autism" training component to it, but also had a school librarian describing her own work with students on the spectrum, and representatives from the Chicago Public Library talking about their recent system-wide efforts to orient staff and acquire/create autism-related materials. The CPL is a big system, and I was impressed at how broad their staff-awareness efforts sounded, though at this point it would be hard to guess it from their web site. They also spoke of "inclusion kits" that they're making available for check-out, though it's not yet a completed work -- the kits are social-story materials aimed at particular situations like using the library or using the CTA public transit system.
The school librarian who spoke was interesting. She had a speaking style that was simultaneously animated, with big gestures, but slowly spoken and with huge emphasis on what felt like almost every point, practically every other word. I actually found it annoying to listen to, but then thought "hey, she's showing us what she thinks works when she communicates with young'uns on the spectrum in her library!" Which put a different cast on it. Kind of like how Barney is totally annoying for adults, but little ones lap it up...
A few random good points:
The presenters pointed out an award-winning set of resources for libraries, put together by Scotch Plains Public Library and Fanwood Memorial Library, both of New Jersey (where the oft-quoted autism prevalence number is 1 in 94.) The program is called Libraries and Autism: We're Connected, and consists of a 20-minute training video for library staff, a PowerPoint training presentation, recommendations for autism-related materials for library collections, a printed tool with Boardmaker-type icons for library-users with autism to communicate with staff, a social-story tool called This is my Library, links and logos. The panel wanted to rope these people into the conference session, but discovered that they'd be receiving an award at the conference during the same time slot!
I was impressed with the video.(It looks like two parts, but Part 1 is actually the complete presentation, 20 minutes long. Part 2 repeats the last 10 minutes of Part 1 - strange. I figured it out! Part 1 & Part 2 are ten-minute YouTube segments, OR you can click on the video player and play the whole 20-minute video from the library server.) It was very reassuring, low-key, professional. Participants in the video were clearly on the spectrum themselves, not just actors (2 kids, one adult).
Several nice points in the training video:
And there was more. As I said, I was quite impressed. I'd be interested to hear reviews from a spectrum perspective, to fill in what I might be missing.
One quibble I have with the materials is some discomfort with the logo. There's that darn puzzle-piece thing again. It's not so bad when the puzzle-pieces are connected to the books in the image -- when the libraries are part of the puzzle of life, and we're all in it together trying to figure out how to do things right, that's positive. But they use the puzzle-piece part of the logo separately too, and the whole implication that people on the spectrum themselves are puzzles to figure out... bleah.
The recommended links on the site also rather bend over backward to be fair-and-balanced about vaccines. On the other hand, the blog recommendations are much more neurodiversity oriented: LeftBrain/RightBrain, Autism Hub, and more.
Well, it's taken me long enough to get this together, I'll just post now. Am hoping to get back to my more regularly scheduled programming once the beans and cherries and apples start to slow down!
I didn't mean to take quite this long to post, but between last weekend's conferencing, the regular daily plate-spinning, and the bounty of the plantation (have frozen umpteen quarts of green-beans, and canned 10 quarts of applesauce and a double-recipe of cherry jam since last we spoke), my poor blog has gone sliding down the priorities.
However. The library conference needs reporting!
Though the pickings were a little slim for my data-library specialty, I did manage to find relevant vendors in the exhibit hall and useful sessions to attend. I also, wonder of wonders, connected up with EVERY ONE of the people-meetings I'd arranged. It really felt in some ways like another reunion weekend, except instead of college friends, it was high school buddies, a housemate from my post-college years in Mennonite Voluntary Service, a college-library colleague whom I hadn't seen since JoyDad & I made our last cross-country move 11 years ago, a data-librarian colleague from social-science data conferences. (Yes, they have those. Who knew?) And then the wonderful hospitality of UncleDO & AuntLO, who treated me to a grilled-out dinner on their rooftop deck Saturday night, with a spectacular sunset and view of the twinkling city skyline as the darkness fell. Ahhh.
The very last session I attended at the conference was something just for me. It was a session called "Serving Students Along the Autism Spectrum." The program was aimed particularly at school libraries, but it sounded to me as if the attendees represented a broad range of libraries -- and also that some of the more coordinated efforts are happening in the public libraries! Which makes sense, because school libraries are often deemed expendable in budget-cutting times, and we're surely in budget-slashing times these days... many school librarians are just trying to keep their heads above water. But I digress. At any rate, the number of attendees caught the presenters off guard, to the point that they ran out of handout packets!
The session itself had a "what is autism" training component to it, but also had a school librarian describing her own work with students on the spectrum, and representatives from the Chicago Public Library talking about their recent system-wide efforts to orient staff and acquire/create autism-related materials. The CPL is a big system, and I was impressed at how broad their staff-awareness efforts sounded, though at this point it would be hard to guess it from their web site. They also spoke of "inclusion kits" that they're making available for check-out, though it's not yet a completed work -- the kits are social-story materials aimed at particular situations like using the library or using the CTA public transit system.
The school librarian who spoke was interesting. She had a speaking style that was simultaneously animated, with big gestures, but slowly spoken and with huge emphasis on what felt like almost every point, practically every other word. I actually found it annoying to listen to, but then thought "hey, she's showing us what she thinks works when she communicates with young'uns on the spectrum in her library!" Which put a different cast on it. Kind of like how Barney is totally annoying for adults, but little ones lap it up...
A few random good points:
- On the school library side of things, there was a good point made about keeping the library in mind when it comes to IEPs (filing away for future).
- On libraries in general, one of the presenters spoke about how libraries can be a natural match for people with autism. It's generally a quiet place; it's generally predictable, with rules for how things go; there are usually safe-feeling nooks and crannies; and there are BOOKS! There are COMPUTERS! You can learn as much as you like about your all-consuming interest!
- An audience member asked for recommendations for story-time books for kids on the spectrum. The responder gave some examples of books with rhythmic cadences and rhymes, repeated patterns, interesting pictures -- and the audience member pointed out that those are all things that make good read-alouds for any kid. YESSS!
The presenters pointed out an award-winning set of resources for libraries, put together by Scotch Plains Public Library and Fanwood Memorial Library, both of New Jersey (where the oft-quoted autism prevalence number is 1 in 94.) The program is called Libraries and Autism: We're Connected, and consists of a 20-minute training video for library staff, a PowerPoint training presentation, recommendations for autism-related materials for library collections, a printed tool with Boardmaker-type icons for library-users with autism to communicate with staff, a social-story tool called This is my Library, links and logos. The panel wanted to rope these people into the conference session, but discovered that they'd be receiving an award at the conference during the same time slot!I was impressed with the video.
Several nice points in the training video:
- They use the quote "If you've met one person with autism, you've met one person with autism." Nice!
- They recommend people-first language (person with autism). I know that's got its own level of controversy, but it fit well into the people-first emphasis of the video overall (e.g. The tips in this video are really quite universal... any encounter with ANY library user should involve a receptive smile and personal words of welcome...)
- One particularly useful conversation tip for de-escalating uncomfortable situations involved asking common social questions to help library users with autism to get on-script and decrease anxiety levels
- Good point that if there's a caregiver present, that caregiver is not automatically an intermediary -- library staff should communicate as directly with the person as possible
- Library staff can be ambassadors to the community, by how they respond to situations involving autism! If the staff is low-key and accepting about flapping or vocal stims, for example, it sends an important message to other people nearby that this is not cause for alarm.
- The video pointed out the people on the spectrum can make excellent library employees and volunteers. (Oh yeah!)
And there was more. As I said, I was quite impressed. I'd be interested to hear reviews from a spectrum perspective, to fill in what I might be missing.
One quibble I have with the materials is some discomfort with the logo. There's that darn puzzle-piece thing again. It's not so bad when the puzzle-pieces are connected to the books in the image -- when the libraries are part of the puzzle of life, and we're all in it together trying to figure out how to do things right, that's positive. But they use the puzzle-piece part of the logo separately too, and the whole implication that people on the spectrum themselves are puzzles to figure out... bleah.
The recommended links on the site also rather bend over backward to be fair-and-balanced about vaccines. On the other hand, the blog recommendations are much more neurodiversity oriented: LeftBrain/RightBrain, Autism Hub, and more.
Well, it's taken me long enough to get this together, I'll just post now. Am hoping to get back to my more regularly scheduled programming once the beans and cherries and apples start to slow down!
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