Saturday, February 26, 2005

Autism and mainstreaming: beyond the 3rd grade

The New York Times > Health > As Autistic Children Grow, So Does Social Gap

I've been thinking about this article throughout the day. Here's the article, I've comments below. Emphases mine. The author is writing about kids with generally above average IQ and very low "EQ" (social skills). All have been diagnosed as having autism, presumably Aspergers in some cases.
... these high-functioning children face a host of new problems as they approach adolescence, when social interactions become more complicated. Parents, educators, researchers and clinicians all say that the majority of such children become conspicuous in the third grade and are bullied or ostracized by the time they reach middle school.

Dr. Sandra L. Harris of Rutgers University, a pioneering educator and researcher in autism, said advances might have fed false hopes. "The intellectual skills of some of these children may lead people to expect more than is possible socially," Dr. Harris said. "They miss so much nuance that it can't be fixed in a 100-percent way. That was the hope. Now we know it's more elusive than that."

Christine Grogan, the director of a school for autistic children in Paramus, N.J., urges educators to be cautious about what they promise parents, adding, "There are many people in the field giving false hope" about whether remaining in the mainstream is realistic for more than a tiny number of children over the long haul.

Virtually nothing in the social arena comes naturally to autistic children. They must be taught how to have a conversation. To show empathy by asking questions. To resist arcane topics that do not interest others. Not to talk too loudly or to stand too close to the other person. To master the vocabularies of sports and flirting.

Even those with I.Q.'s above average struggle to read body language or to imagine what other people are thinking. If they learn a joke, they may tell it a dozen times. They are too literal-minded to understand white lies and too rule-bound to understand they should not tattle. They overreact to routine teasing and invite ridicule by carrying their books over their heads or accepting a dare to kiss a girl...

...Autism experts say that social skills training is the new frontier and that the burden has shifted from special schools and one-on-one settings to public schools because of the stunning increase in autistic children now able to attend.

Catherine Lord, a researcher at the University of Michigan and the primary author of a federal report on educational strategies for autistic children, said that many school districts are "still debating whether social development is even considered an educational objective," although social deficiencies are a hallmark of the disorder. Dr. Lord encourages parents to insist on having specific social skills spelled out in a child's individual education plan, mandated by federal law, and to call in a lawyer if necessary.

A few districts are using novel techniques, like the Montecito Union School, near the University of California, Santa Barbara, where graduate students from its Autism Research and Training Center help autistic children integrate at recess, an especially vulnerable time.

On a larger scale four districts in the New York region use a curriculum designed by Michelle Dunn, a pediatric neuropsychologist at Albert Einstein College of Medicine, which combines social skills groups for autistic children with schoolwide attention to the need for tolerance and trains school staff members to continue the curriculum on their own...

...Many educators who champion the behavioral techniques that made widespread mainstreaming possible are lowering their expectations. Bridget Taylor, a behavioral researcher who is the director of another school in Paramus, said she now tells parents of kindergartners ready for a regular classroom that "over time it's not necessarily a realistic placement."

Gary S. Mayerson, a New York lawyer who represents families seeking services for autistic children, says none of the options are ideal. Schools for learning disabilities rarely offer sufficient academic challenge. And private schools can choose which children to accept or to expel.

I don't have the time to put my comments into a coherent paragraph, but here are some thoughts:
  1. When I read the description of these kid's school life it's hard not to think of Larry Summers, President of Harvard. Or the kids I knew at Caltech. Or a heck of a lot of electrical engineers. Of course those comments don't remind me of my childhood, heaven forefend.

  2. Despite what I just wrote in #1, although nerdliness has a certain facile resemblance to autism, that doesn't mean they share the same pathophysiology. A person who's never had an interest in piano may play just as poorly as someone who's quite unable to learn. The difference is the first person may learn to play, even if they don't enjoy the process.

  3. There do exist communities that will support persons with high IQs and very low EQs (emotional intelligence quotient); but you usually have to be over 18 to join up and capacity is limited. At the other extreme LD schools may not be able to handle the academic range of many of these kids; even worse, LD schools are often under heavy political assault with perpetual underfunding and high rates of teacher burnout.

  4. It's hard to know what the best political solution is, but my hunch is that it's around redoing what an LD school is about and building a stronger political support structure for the abused LD world. Perhaps there's a way to harness the energy of the autism community; many of the parents of children with high IQ autism may be somewhat nerdly* but they are not themselves autistic; they function well enough to have both power and money. There might be a way to leverage those talents to refactor LD schools to serve a broader community.

  5. Adult life with high functioning autism may be far more agreeable than high school life. Even for people who don't have autism or Asperger's, high school can be pretty difficult -- adult life has more niches and opportunities than adolescence provides. So the challenge for parents (like we need more challenges) is to somehow get the kids through high school in one piece. I think this is much harder in the US than elsewhere, I think Americans have produced a uniquely intense and socially demanding high shool environment.
*In our household "nerdly" is an attribute, not a defect.

Wednesday, February 23, 2005

Reading tutors: Upper Midwest Branch of the International Dyslexia Association


I wrote Learning Circle asking for a list of tutors who use their teaching materials. Oddly enough they don't keep such a list. They suggested I visit an affiliate site of the International Dyslexia Association. Our Minnesota (midwest) affiliate does have a tutor referral service and I'll report on how that goes.

Tuesday, February 22, 2005

ADOS-G instrument for autism diagnosis

About the ADOS Exam

This web site is designed for researchers exchanging genetic materials for basic autism research. It includes a fairly technical but complete description of the currently favored method for "diagnosing" autism. I expect this test has a significant error rate.
The Autism Diagnostic Observation Schedule -Generic (ADOS-G) is a semi-structured assessment of communication, social interaction and play or imaginative use of materials for individuals suspected of having autism or other pervasive developmental disorders (PDD).

Sunday, February 20, 2005

Summer reading group in Twin Cities area?

I'm looking to join or start a summer reading group in the Twin Cities (Minneapolis St. Paul) area. It would be for children ages 7-9 reading at the early first grade level with significant reading delay. I'm willing to hire a tutor.

If you know of such a group, or would like to join one, please email me at:

Thursday, February 17, 2005

Saint Paul Public Schools Parent Portal

Campus Parent Portal Login

Our school district has launched a "parent portal". (The "portal" word annoys me for historical reasons, but it's reasonably descriptive). It's supposed to allow us to track our children's progress. It will be interest to see if there's any useful data beyond the lunch bill.

Sunday, February 13, 2005

Phonetic alphabet chart -- from earobics

Cognitive Concepts - Resources

Free to download and print.

Why Clifford Phonics software is not educational, and Earobics is not entertaining Software: Clifford the Big Red Dog: Phonics

We have a pretty good collection of pre-school through grade one "educational software". Clifford Phonics is one of the better examples; that's why I'm picking on it here. We also own Earobics, a niche market package for phonemic awareness training. I've watched our children work with both, and it finally dawned on me why mass market "educational software" has only marginal educational value.

It's the market, stupid.

Take Clifford Phonics. Sure it teaches bits of phonics and reading, but it teaches it in an ad hoc way without any kind of consistent progression model. Worst of all in the incessant music. I watched my son using it during a rhyming word exercise. He's supposed to hear two words, then pick an object that rhymes with them. Great idea, except one of his challenges is isolating sounds and retaining them in short-term memory -- and all the sounds in Clifford Phonics are surrounded by a loud and incessant musical background. It's like trying to find a lost object while wearing psychedelic eyeglasses.

Nice pictures. Catchy music. Lousy education for a child that needs education. Fun for a (younger) child who has no disabilities, and no real need for the software either.

On the other hand, consider Earobics. Dull as dishwater. Weak production values. Boring. But it's structured, it isolates sounds, it has a good progression model.

The Clifford Phonics people aren't dumb. Their reading consultants probably know it's of marginal or no value to a child who really needs help. The Earobic folks aren't dumb either, but they know Earobics can't invest in fancy production values.

Why does this happen? That's the way markets work. Clifford Phonics, and its ilk, are products for the large and wealthy "edutainment" market. This is a market made up of fairly well off adults who need to entertain their children and like the non-violent aspects of this software and the reinforcement of respect for learning. Any educational component is relatively minor, but it's not important anyway. The vast majority of these kids will inherit their parents facility for learning and the software is of minimal value and minimal harm.

Earobics and its kin are markets for a the small and relatively poor education market.

The same phenomena operates, by the way, with advertiser driven health education web sites. People who really need health education in diabetes, cystic fibrosis, multiple sclerosis are a small minority, and their disease often means they don't have a lot of cash to attract advertisors. The market with money has different medical interests: weight loss, cosmetic surgery, exercise programs, life extension, back pain (everyone gets that) and self-diagnosis (usually of exotic disorders). The huge expansion in internet health sites in the late 90s was all driven by advertising dollars, and they focused on entertainment and production values -- not services and education.

Could edutainment software also be educational? In theory yes. They could make the music optional, they could enable parents to control what parts of the program kids could use, they could implement progression and monitoring but keep it optional. The problem is all these things increase costs and don't help one bit with the target market. That's not a formula for staying in business.

Could truly educational software develop better production values? I think there's more hope here. If the open source community starts getting into the game business, then the production frameworks used for entertainment software would be available for use in true educational software. A company could focus on its core competencies and narrow revenue streams, while parents and outsiders could donate the work to add production values on an open source base. It's not easy, but I don't see any market forces actively pushing against this option.

Otherwise, we'll be stuck with two unsatisfactory choices: entertaining software that's not truly educational, and educational software that's really boring.

Saturday, February 12, 2005

Project Read -- from Bloomington Minnesota

Welcome to Project Read

Beth is the sister of our friend Jane. She teaches in Cleveland and focuses on children who can't read. She's fully up to date and reading research; in their systematic structured phonemic based program they teach the vast majority of their non-reading students to read -- with perhaps 1 in 50 resorting to a "word recognition" program. Her thought on schools that are still oriented to "whole language" was "get out now".

Talking to her is like finding water in the desert (kudos to Bob for insisting we bother her). The big surprise though was that the program favored by her school district comes from our back yard -- the place I go to work every day -- Bloomington Minnesota.

Here's some text from the Project Read web site (emphases mine w/ some corrections to their web typos):
Project Read©/Language Circle© is a research based mainstream language arts program for students who need a systematic learning experience with direct teaching of concepts and skills through multisensory techniques.

Project Read© has five curriculum strands:
  • Phonology
  • Linguistics
  • Reading Comprehension – Report & Story Form
  • Literature Connection
  • Written Expression
... Project Read©/Language Circle© is designed to be delivered in the regular classroom or by special education, chapter one, and reading teachers who work with children or adolescents with language learning problems. Project Read© is recommended as an early intervention program for grades one through six, but is equally effective with adolescents and adults.

Project Read©/Language Circle© is cost effective. The cost per Project Read student is about 10% of the cost of funding a special education "pull out" program. Project Read's principles of systematic learning, direct concept teaching, and multisensory strategies reach the alternative instructional needs of students, thereby reducing the number of students referred for special services.

Wednesday, February 09, 2005

The neurophysiology of autism

The New York Times > Health > Focus Narrows in Search for Autism's Cause

The hypotheses:

1. Autism is a disorder of connections between functional components of the brain leading to an inability to integrate cerebral subunits.

2. Some of the subunits function well in isolation. This can lead to a strength of focus and an understanding of the detail.

3. Subunit isolation is associated with an excess of white matter and with inflammation. It is not known whether the inflammation is related to the fundamental cause or if it is a secondary response. It is also not known if the inflammation is helpful, harmful or irrelevant.

Sunday, February 06, 2005

Faughnan Reading and Spelling database

I'm engaged in a small project to see if I can help integrate the diverse approaches that our son's school is taking to teaching him reading.

The research I read, and the opinions of leading reading researchers, currently favor an integrated, structured and coordinated approach to teaching reading that spans home, schools, special education, tutors and aides and regular classrooms. The current research paradigm is that the bulk of effort should focus on phonemic education; it's an open question as to what value "whole word"/"whole language"/word-recognition approaches add to this. Certainly our son's educators believe strongly that the whole language approach (Edmark, etc) brings some additional value. In the absense of research, and in the absence of individualized prescriptions (functional MRI, genome analysis, etc) expert opinion has to be credited.

I think it is true of every organization, not just a school, that coordination and integration is extremely challenging. In a school, where a class is a compromise between the needs of the one, the needs of the many, and funding this challenge takes on another meaning. Integration may not occur on a time scale that will be meaningful to our special needs reader.

We are, for better but more likely for worse, trying to take on some of that integration role. To that end I am compiling a word database (currently Microsoft Access 2000) that relates different word lists used by my son's varied teachers (Fry, Dolch, and top 100) to his spelling assignments and to his knowledge (read, spell). I'll probably add sample sentences too. Words will be associated with phonemic attributes (isPhonemic, etc).

The goal is to use this to track his progress, to try somehow to coordinate what he's being taught at school, and to generated some exercises to complement his homework. As a side-effect it also contains the above lists (based on the linked sources, at least one word appeared twice in a single source, suggesting a bug on data entry).

A published version of the access database is here. As I work on it I'll add reports, views, documentation etc. If anyone has a particular interest in this database, or would like other formats (FileMaker for Macintosh, Excel, tab delimited) or reports please email me at