Monthly Archive for September, 2006

School’s in

One can learn how the school year’s starting for some teachers of students with disabilities by reading blogs. Over on liquidwafflegirl, Jill has a couple of notes about what it’s like during the beginning of the school year for a teacher of students with Emotional and Behavioral Disorders. One can follow along with the trials and tribulations she’s experiencing.

On TeachingLizzie, Beth is documenting her first year of teaching. As one might expect, she’s had some good days, but she’s run into a rough spot or two.

If there’s a theme to these posts, it appears to be behavior management concerns. I can understand, as I recall how important it was to get things right on that score…and how difficult it is to do so when working with students who have been assigned to you because of their difficult behavior. Taking the longer view—putting a strong management system in place and implementing it calmly and faithfully; knowing that it will bring about change over time, that learning how to behave takes time, doesn’t happen in an instant—isn’t easy. Sadly, sometimes I forgot this and sank into the same spots where the kids were: Only able to see the immediate situation, I’d engage in a battle of wills. But those strong, consistent, persistent, and positive management systems do work. I’m hoping that things will go well in these classrooms.

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LEAs will pay

Under the headline “Judging Autism,” the Richmond (VA, US) Style Weekly has a feature about two recent cases in which US District Court Judge Robert E. Payne found that local education agencies have failed to provide free and appropriate education for children with autism and should be responsible for the costs of their schooling at private facilities. Brandon Walters uses the second case about James Peterson as the launch point for examining the causes and consequences of these two cases (see previous EBD Blog posts on the first case regarding Reid Tutwiler here and here).

Linda and Karl Peterson may have won in court, but they say victory eludes them. They still don’t know how, or for how long, their 12-year-old son, James, will be able to stay in the private school he attends. It costs $30,000 a year.James Peterson has autism, a developmental disability that significantly impedes a child’s capacity to communicate, talk and socially interact with others.

In late August, U.S. District Judge Robert E. Payne ruled that Peterson didn’t receive what federal law entitles every child under the Individuals with Disabilities Education Act: a free and appropriate public education in the least-restrictive environment.

There is a bit of misinformation in the article. Mr. lllllll reported “that there are more children diagnosed with autism than any other disability,” which is not accurate. According to the most recent (2003) Annual Report, 2,365 children between ages 6 and 21 were identified as having autism by schools in Virginia; this is fewer children than the number identified as having Learning Disabilities (155,373), Speech-language Impairments (77,330), Mental Retardation (13,630), Emotional Disturbance (12,503), Multiple Disabilities (2,413), and Other Health Impairments (16,103).

Link Mr. Walters’ story.

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Hard decisions

This American Life, a radio show from WBEZ aired by many NPR stations in the US, carried a story about a family living with autism. One of twin sons, Ben, has autism. The story recounts the family’s life and how, ultimately, the parents decided to have Ben live in Oconomowoc Developmental Training Center. The Royko family’s account of their lives is both moving and informative.

David Royko, Ben’s father, has published some accounts of their lives in magazines and on a Web site. In one of the accounts, he described what it has been like to visit Ben at the training center, and his feelings about life after Ben moved there. Here’s a snippet:

As for Karen and I, we miss Ben every day, sometimes achingly so, but at the same time, every day without the tsunami of autism saturating the life of our family feels like a vacation. That Ben is doing well allows us to truly enjoy our new life. If anything good has come from life with autism, it is a profound appreciation for the every-day–a sense of the ordinary feeling extraordinary. Even having a cold for the past week has been almost enjoyable because now, a cold is just a cold, not a reason for panic (Ben gets cold>gets cranky>won’t eat or drink the stuff with his meds>sleep goes completely wacky>behavior spirals out of control, etcetera, et-freaking-cetera). The other day, someone asked us if we’d gotten used to this new life yet, and I said, “No, and I hope we never do.”

Link to a streaming MP3 of broadcast; the segment about the Royko family starts about 37+ min into hour. At the This American Life Web site there are also copies for sale. Link to Mr. Royko’s page where one can find links to articles he’s written about the family’s life with autism. By the way, the first segment of the show from This American Life takes a historic look at Harry Harlow’s research with monkeys and the second describes the life of a child who was lived in an Romanian orphanage for more than 7 years. It’s worth hearing, too.

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Data’s value

Over on The Life that Chose Me Dick has lots of good posts. Dick, who’s both a parent of a child with disabilities and a teacher of students with disabilities, has two recents posts about the value of collecting data about individuals’ behavior that are well worth reading. They illustrate the utility of having data to make decisions and foster communication. Check out his Why I am Such a Data Hound and Perils of Data Collection.

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Soap gets in my eyes

Over at Soapy Water molly_g has been documenting the joys and travails of having a child who “didn’t come out of the cookie cutter.” “The Kid,” as she calls him, is going on 7 years old (I think) and having a difficult go at this time, behaving aggressively and experiencing what molly_g calls “a seasonal disorder.” There are issues of many stripes in this story (medication, insurance, etc.), and now she’s struggling with the schools about appropriate placement. It’s a story the deserves following and molly_g and The Kid deserve support. Go read “Rock bottom” and the rest of the entries recounting the story.

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Secretin does not work

It’s been almost a year since I updated a Web page about secretin as a treatment for autism, and it deserves an update. When I originally wrote the page in the late 1990s, there had been a study suggeting that there might be beneficial effects; I was intrigued and wanted to learn about it because I thought I might use single-subject research methods to examine the effects across a range of dependent variables.

What I learned at that time made me skeptical, however. What I learned when I subsequently revised the page has confirmed my reservations about using secretin therapeutically. Professor Peter Sturmey of Queens College (City University of New York) reviewed the research on secretin and found that it has not been shown to have benefits.

1: Res Dev Disabil. 2005 Jan-Feb;26(1):87-97.

Secretin is an ineffective treatment for pervasive developmental disabilities: a review of 15 double-blind randomized controlled trials.

Sturmey P.

Department of Psychology, Queens College and The Graduate Center, The City University of New York, CUNY, Flushing, NY 112367, USA. psturmey@aol.com

In 1998, Horvath et al. [Horvath, K., Stefanatos, G., Sokolski, K. N., Wachtel, R., Nabors, L., & Tildon, J. T. (1998). Improved social and language skills after secretin administration in patients with autism spectrum disorders. Journal of the Association of the Academy of Minority Physicians, 9, 9-15] reported an uncontrolled trial of secretin with three participants with autism, which apparently resulted in significant behavioral improvement. Subsequently, secretin was widely used. Sandler et al. [Sandler, A. D., Sutton, K. A., SeWeese, J., Girardi, M. A., Sheppard, V., & Bodfish, J. W. (1999). Lack of benefit of a single dose of synthetic human secretin in the treatment of autism and pervasive and developmental disorder. The New England Journal of Medicine, 341, 1801-1806] reported the first double-blind trial of secretin with negative results. This article is a review of 15 double-blind trials of secretin. Almost none of the studies reported any significant effects and none concluded that secretin was effective. Transient effects of secretin, including both minor benefits and behavioral deterioration were reported, probably due to multiple statistical tests. Four papers reported data on differential responding in sub-groups of participants, including those with gastrointestinal symptoms. These effects were not replicable. At this time there is no robust evidence that secretin is an effective treatment for pervasive developmental disorders.

Evidence such as this does not appear to have detered people from recommending secretin. As a Google search reveals, the Internet is alive with recommendations for it.

Most of the recommendations seem predicated on personal experience rather than science. This is probably the most difficult kind of false evidence to discount. When people have seen something with their own eyes, it’s hard for them to accept contradictory evidence. The problem, of course, is they may not have seen what they saw had they not expected it: “I wouldn’t have seen it if I didn’t believe it.”

This problem revives my interest in conducting research on secretin. I’d like to study whether (a) child behavior and (b) adults’ reports of child behavior change when children with autism are given placebo or secretin. My hunch is that the child behavior will not change, but that some adults will report improvement, even when the child receives placebo.

Link to the Pub Med abstract of Professor Sturmey’s review (same content as quoted here). Link to contact information for Professor Sturmey.

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Miss Dennis’ new job

Over on Your Mama’s Mad Tedious, Miss Dennis reported that she’s started her new teaching job. She providing itinerate services for students with autism. We’ll be monitoring her progress with interest. Link to Miss Dennis’ post about the new job.

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Paternal age and autism

Older fathers are more likely to have children who have autism than younger men, according to a study by Abraham Reichenberg and colleagues, writing in the Archives of General Psychiatry. The study, which examined a large number of births in Israel over a 6-year period, revealed that men 40 years or older were nearly 6 times more likely to father autistic children than than men younger than 30. The finding holds even when maternal age is taken into account

According to news reports, there is another interesting twist to this study. The sex ratio differs for the autistic children of older fathers. Whereas the overall ratio is usually about 6:1 (boys:girls), for older fathers the ratio is closer to 1:1.

These results point to a genetic component in autism. With replication and refinement, the nature of the possible genetic component and the extent to which it accounts for autism’s causes will become clearer. Is it a true lead? With what does it interact? What accounts for autism among children born of younger fathers?

Advancing Paternal Age and Autism

Abraham Reichenberg, PhD; Raz Gross, MD, MPH; Mark Weiser, MD; Michealine Bresnahan, PhD; Jeremy Silverman, PhD; Susan Harlap, MBBS; Jonathan Rabinowitz, PhD; Cory Shulman, PhD; Dolores Malaspina, MD; Gad Lubin, MD; Haim Y. Knobler, MD; Michael Davidson, MD; Ezra Susser, MD, DrPH

Arch Gen Psychiatry.2006;63:1026-1032.

Context Maternal and paternal ages are associated with neurodevelopmental disorders.

Objective To examine the relationship between advancing paternal age at birth of offspring and their risk of autism spectrum disorder (ASD).

Design Historical population-based cohort study.
Setting Identification of ASD cases from the Israeli draft board medical registry.

Participants We conducted a study of Jewish persons born in Israel during 6 consecutive years. Virtually all men and about three quarters of women in this cohort underwent draft board assessment at age 17 years. Paternal age at birth was obtained for most of the cohort; maternal age was obtained for a smaller subset. We used the smaller subset (n=132271) with data on both paternal and maternal age for the primary analysis and the larger subset (n=318506) with data on paternal but not maternal age for sensitivity analyses.

Main Outcome Measures Information on persons coded as having International Classification of Diseases, 10th Revision ASD was obtained from the registry. The registry identified 110 cases of ASD (incidence, 8.3 cases per 10000 persons), mainly autism, in the smaller subset with complete parental age data.
Results There was a significant monotonic association between advancing paternal age and risk of ASD. Offspring of men 40 years or older were 5.75 times (95% confidence interval, 2.65-12.46; P< .001) more likely to have ASD compared with offspring of men younger than 30 years, after controlling for year of birth, socioeconomic status, and maternal age. Advancing maternal age showed no association with ASD after adjusting for paternal age. Sensitivity analyses indicated that these findings were not the result of bias due to missing data on maternal age.

Conclusions Advanced paternal age was associated with increased risk of ASD. Possible biological mechanisms include de novo mutations associated with advancing age or alterations in genetic imprinting.

Link to the abstract, to coverage by Thomas Maugh of the Los Angeles Times, to coverage by the BBC, and to related coverage via Google.

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