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Autism CRN

From the syllabus: Document discussion questions or open questions for each reading assignment. Write 3 things gained from class.
Classpoints of 4/17/07
Dan Gillette - AutismSpeaks
  1. Disappointed Dan didn't really give a short talk. I realize he was there to see more where Autism Speak's money was going, but I still would have liked to have heard his take on the more political side of things. We've talked a lot about the medical/diagnosis/therapy side of things and about the technological side, but very little about the politics. I think Dan could have really offered some interesting insights on where he things the biggest battles (both within and outside the community) are currently.
  2. Really, really like Rachel's superhero drawings. She has some real talent. I'd love to see her put together a e-book or PDF or something like that for free distribution by AutismSpeaks or another organization.
  3. Look into Gs Autism Walk Team
Classpoints of 4/10/07
Roy Q. Sanders - Marcus Insitiute
  1. Autism: treating syndrome/symptoms rather than treating disease.
  2. Syndromes: big collection of symptoms that people have decided to lump together and call something. Like ADHD may be 12-16 different things, but people have lumped them into ADHD.
  3. Number of confounding factors. Trying one medicine/intervention at a time just isn't feasible. Must try multiple things. Very difficult for drs, parents, and kids.

Classpoints of 4/3/07
Dr. Marshalyn Yeargin-Allsopp, CDC
  1. Amazed at sheer amount of data that CDC collects. Even with just 8-10 sites/states. I can't imagine the filtering. Wonder how much "dirty data" had to be hand manipulated, validated, etc?
  2. Good point about getting data from other sources. Like CDC going to school systems rather than reinventing the wheel and trying to collect all that data again from parents/kids.
  3. It's a nice trick to avoid the diagnosis problem: "We just collect the data after the diagnosis from teh school system. The doctor's in the local community make the diagnosis". Very neat for experimental methods, but still presents a problem
  4. Can't believe JAMA didn't want to publish originally.

Classpoints of 3/27/07
Michelle Ivey visit - absent at conference in SLC

Classpoints of 3/20/07
Spring Break!

Classpoints of 3/13/07
Matthew Goodwin - Groden Center
  1. Interesting to note how small monitoring vest is. Must hug very tightly. Wonder if pressure is calming like TG described.
  2. Idea of investigating biofeedback is a great one. Wonder how often children tear up vest (either deliberately or unintentionally) in course of day (or period of monitoring)
  3. Specifically looked at heartrate and "arousal". What other metrics might be useful for determining "arousal". Blood oxygen? GSR?

Classpoints of 3/6/07
Visit to Marcus Institute
  1. Idea of "therapy room". Never heard of this concept before. Didn't want to ask about what "therapy" meant in this context.
  2. Very impressive facility: ratio of students to teachers, classroom size per student, playground thought and design, etc... Wonder what the bill to the education system is?
  3. Struck by the huge keyring of clickers and how cumbersome it was. There were about 10 clickers on one carabiner and it was huge. How do teachers learn which clicker is for which behavior or do they have to stop and check each one?

Classpoints of 2/28/07
  1. "ABC" Antecedent, Behavior, Consequence when recording incidents in special ed. classrooms
  2. Discrete Trial Training: Prevent wrong answers. "Errorless training". Some children don't know that "No" is a negative reinforcement.
  3. Adding science modules on DT Trainer as project.

Classpoints of 2/20/07
  1. Andrea: communication/Comp Sci. PhD at Northwestern. Play w/ Sam system for imaginative play
  2. "Sam" deliberately ambiguous so child can relate on some level. I agree w/ this decision in spite of the huge class discussion.
  3. Fascinating experiment when she lets the child play WOZ and control sam. What could be done w/ letting kids "generate content"?

  1. Authorable Virtual Peers for Autism Spectrum Disorders (Tartaro & Cassell)
  2. Challenges in Evaluating Psychosocial Interventions for Autistic Spectrum Disorders (Lord, et al.)
  3. Treatment Integrity: A Review of Intervention Studies Conducted w/ Children w/ Autism (Wheeler, et al.) Article details experimental design flaws in autism research. Very few studies report on treatment variables in studies. How do you measure whether treatments are performed correctly or not? This article basically points out that treatment integrity (or at least reporting on it) isn't a requirement for publication in major journals. So two parts: what are independent variables in the intervention/experiment and how were they sure that the intervention was carried out correctly.
  4. Interventions for Young Children with Autism (Levy, et al.)
  5. Narrative Ability in Autism (Losh)

Classpoints of 2/13/07
  1. Scott Bales: Thinks that high functioning autism and Asperger's are different. Kanners: under-emotional, compartmentalize somewhat (Einstein). Asperger's overly-emotional, little ability to compartmentalize (Thomas Jefferson).
  2. "It's not normal to be friendly to someone with Asperger's. If someone is, you have to question their motives." - SB
  3. Sean Young: 50% of aspies pursue higher ed but only 3% live independently - Ntl. Autistic ... Great Britian 2001 study.
  4. Harder to socialize over IM because so much info is scraped out. Are people using sarcasm, etc? Better to use small groups or common interests.

  1. Last of TG: Ok, very tired of this book. ENOUGH WITH THE COWS ALREADY!!
  2. Chapter: Born on a Blue Day: Fascinating. First chapter of book by man with Aspergers. About how he visualizes numbers. He uses numbers and how he responds to them emotionally. Certain numbers feel fuzzy, sad, imposing, red, blue, etc. What I found most fascinating was his drawn description of of the multiplication problem 53x131. He drew two abstract shapes representing 53 and 131 and the space between them allowed him to compute the answer, 6943. So, my question is if this is a different "language"? Can (or DO) other ppl. with Aspergers compute (or visualize or whatever) the problem this same way? Could you give another person the abstract shapes and they solve the same problem? So, when doing typical math, there's a logical, concrete way of solving that problem that anyone can follow. But I don't see how the Asperger's way of "doing math" would translate person-to-person. But that could be my lack of understanding.
  3. Article: Three Diagnostic Approaches to Asperger Syndrome: Implications for Research

Three Classpoints 2/6/07
  1. "The plural of antecdote is NOT data."
  2. M-Chat study at GSU/Robins 3629 children -> 14 ASD
  3. PlayMotion - variety of games, prelingual, spelling, full body motion. Can you speed up and slow down things like soccer or volleyball? Maybe for kids w/ motor impairments?

  1. Article: Characteristics of Infantile Autism: This is what I would call a large "survey" article discussing a number of studies and the general methods that many people try to use to facilitate earlier and earlier dectection. The article lists family home videos, early screening devices, and parent report. I found this article very useful as a high-level overview type of article, but many of the study descriptions in it, I found to be annoyingly incomplete. But I suppose that for a survey article, that is the point. It's a starting point for digging deeper into the specific studies.
  2. Article: Childhood Autism Rating Scale and Autism Behavior Checklist Correspondence and Conflicts with DSM-IV Criteria in Diagnosis of Autism: Basically, two different diagnostic implements, CARS and ABC. Tested kids already diagnosed as autistic or w/ other developmental delays. Used scales to try to differentiate developmental delays from autism. ABC had unacceptably high false negative rate. (in class, GSU Diana Robbins said she knew of no one who used ABC). ABC was obviously a very outdated classification scale as one of the things someone could be diagnosed as was "deaf/blind" which I found mind boggling. Mixing sensory disabilities and developmental disabilities was the first sign that it was a fairly worthless scale.
  3. Article: Detecting Autism Early (Scientific American Mind) General gist: two different researchers are working on finding a blood test for autism. Looking at a variety of indicators: proteins, antibodies, etc. One of the researchers is starting a large scale trial at UC Irvine's MIND institute with 900 children diagnosed w/ autism, 450 typical kids, and 450 with other developmental delays. Other scientists speculate that there won't be a "test" for autism, but it could perhaps separate those that are at-risk from those that are not at-risk.
  4. TG Chapters 7-8. Very annoyed with this section of the book. If I had wanted a book on cattle processing or cattle slaughter, I would have bought a book on that subject. There were few connections between autism and her life, like she's been drawing in the rest of the book. While those connections may be tenuous in other chapters, they were nonexistent in this one (until the "update" section at the end of the chapter). I realize that she feels an affinity with animals, but good grief! I could barely make it through this chapter. And I wonder if autistic people (as a whole) would like being compared to cattle.

Class points of 1/30/07
  1. Implication that people who are autistic are good at certain skills but also the reciprocal of that that people who are good at certain skills are autistic.
  2. Rosa's comparison of autism to other "us against them" type "-isms": racism, sexism, ageism, etc. Very compelling.
  3. Differences in communication systems. Gillian's point that she "communicates" with her dog everyday but we expect more from human communication.

  1. Finished K-S book. Think it's a great resource for parents who need a nontechnical guide or need an overall primer after a new diagnosis. But the more I read, the more I think her biases come through. In Ch. 8, she continually harps on flourescent lighting (in a chapter entitled "Community Life" of all places!). This seems to be based on nothing more than Temple Grandin's conversations with her and her own personal experience. On the basis of this she advocates outlawing flourescent lighting! I personally found this approach (more attention to things she has experience with) really, really annoying.
  2. So the K-S book seems to rely overly much (in my opinion) on the books written by high functioning adults such as TG and others. While this is almost certainly due to lack of insight into what other, lower functioning people experience, I think that it might do a disservice to all individuals with Autism.

Class points of 1/23/07
  1. sprats acronym from Bob: senses, perceptions, reactions, abilities, thinking, systems
  2. problem of matching autistic person to a mentor who can find skills at an early age and use that as a "hook" to enable further learning. Further: Problem of finding the one thing that inspires your child (e.g. Thomas the Tank, engines, etc). How to leverage that over time?
  3. Gregory's point about "ethics" (for lack of a better word) of offering ideal treatments in books like K-S did. And his point that doing what she said would entail 40+ hours a week of one-on-one therapy. And how much guilt saying things like that brings to the parents who may have other children, jobs, aging parents, etc.

  1. Still finding Temple Grandin book disorienting. Very much her experiences. How much weight can we lend to one person's (of about 5 peoples') experiences in defining an entire class of people? Seems very risky and seems to be how both TG and K-S are presenting information.
  2. In treatment section of K-S book, she talks about "holding therapy" as something of a hocus-pocus therapy but then goes on to talk about "deep pressure" therapy being different and psysiologically based. I never saw where she discussed "deep pressure". Maybe I missed it.
  3. Found K-S treatment section to be overwhelming. Would a parent actually have time to read and research all the links for different treatments?

Class points of 1/16/07
  1. The Woman Who Thinks Like a Cow - BBC Documentary on YouTube - TG biographic piece to watch later
  2. Comparison between caring for autistic children and older adults. "Aging in place" idea for both.
  3. Struck by Gregory's example of "one teachable moment" when the one time he misidentified something was the one time his son was receptive to that information and learned it.

Parts 1-4 of "Autism is a World" on YouTube.
Thoughts about "Autism is a World":
  1. Other disabilities in play.
  2. Facilitated communication by letter instead of word or concept.
  3. Different caretakers for different "moods" - great idea! never would have thought of that.
  4. Ethics of encouraging compulsive behaviors (gambling, drinking) in someone who may be more prone to compulsive actions
  5. Syracuse University Conference:of educators and people w/ autism
  6. How to reconcile adult mind with non-adult capabilities in many different areas: someone who can take college level classes but can't drive or dress themselves.
  7. Years ago estimated that 75% of people on spectrum were mentally retarded. What is current estimate?

Thoughts on "Thinking in Pictures":
  1. Writing style is a bit disorienting. Trying to piece together background and timeline from little snippets. No concept of "bigger picture" of her life and how her life unfolded. Would have been useful to have an orientation chapter.
  2. Seems like her chain of visual thinking (symbols and childhood memory snippets) would be extremely fragmented. Never thought before about putting symbols to abstract concepts. Except maybe when my brother was 2 and asked me to explain what patience was. But even that's not the same as a pictorial symbol attached to the word "patience".

Thoughts on ASD:
  1. Very good laypersons guide.
  2. A bit loose with statistics and summarizing studies (e.g. pp.29 and following where talking about a study that "found" that the increase in autism couldn't be attributed to the changes in autism diagnosis standards, statistical anomalies, or to a population influx. Well HOW did it justify those claims??)
  3. In trying to present everything, it gives a bit of a scattershot approach. But good suggestions for practical things parents can do (e.g. keep a notebook of child's information, video tape because it presents more information, etc.)

Class points of 1/09/07
  1. I was surprised at the number of people in such a small class that had family members or friends with autism or some other developmental disability. There were sisters, cousins, friends, sons, etc.
  2. Problem of designing for autism is same as designing for any disability. How to include most? Most "bang for buck" when designing.
  3. Lack of any one "problem" to concentrate on for "fixing" autism.

Last modified 24 April 2007 at 9:56 am by Valerie Henderson