Research participation opportunities

In an accompanying PDF I have listed studies that are currently seeking children (both female and male) with Emotional of Behavioral Disorders (especially autism spectrum disorders) as participants (some include adults, as well) that are registered with ClinicalTrials.gov, a service of the US National Institutes of Health (NIH). The studies have diverse purposes: They may be observing different events (whether overt behavior or neurochemical activity) or they may be testing different therapies (ranging from behavioral to medical methods). Many are sponsored at least in part by the NIH, but some have funding from universities or even private industries. Because of its affiliation with NIH, ClincialTrials.gov is more likely to represent medically oriented studies and studies that use rigorous scientific methods (i.e., randomized clinical trials or RCTs), but this is not exclusively the case. Readers should examine the studies carefully.

The list is not exhaustive (I used “autism” in the search, so there are many more studies that could be located by using other terms), and I’ve provided only some of the data about each study in the table, but you can learn a fair bit about individual studies. For example, one can learn about study number NCT00198107 that is entitled “Evaluating the Effectiveness of Aripiprazole and D-Cycloserine to Treat Symptoms Associated With Autism.” It focuses on individuals with Autistic Disorders and examines an intervention (in this case, comparing drugs called Aripiprazole D-cycloserine to placebo in a randomized design with double-blind (Subject, Caregiver, Investigator, Outcomes Assessor) | Primary Purpose: procedures. The study began 1-Sep-05 and will end 1-Sep-11 (making it odd that it is still listed as open, no?).

To locate additional information about a particular study, copy the NCT ID number, go to ClinicalTrials.gov, and enter that number into the search box. Download the PDF here (10 pages).

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Is environment > genetics in cause of Autism?

New research by Joachim F. Hallmayer and colleagues released on 4 July 2011 raises questions about how strong a role genetic factors play in causing Autism. A large and careful twin study by Professor Hallmayer’s Stanford University team conducted with the support of the US National Institutes of Health (NIH) found that other factors known as the “shared environment” also influence susceptibility to Autism to a greater degree than previous research had indicated.

In genetics research, outcomes such as Autism can be caused by (a) genes, (b) shared environmental factors, (c) non-shared environmental factors, and (d) various interactions among these first three factors. (Technically, there is also “error,” a factor which is included to allow for some slippage is the relationships among these four.) Genes, of course, can be the same or different; in monozygotic or dizygotic twins they are all the same or 50% the same, respectively. The shared environment for monozygotic twins begins in the womb where they share the same placenta. After they are born, monozygotic twins are more likely to have more shared experiences (e.g., they are more likely to be dressed in matching outfits) than dizygotic twins, so they have a slightly greater shared environment than their dizygotic peer. Non-shared environments are the unique experiences people have; for twins, this factor is pretty minor, and it carries little power or weight. But, back to the chase….

In contrast, for example, to a famous study by A. Bailey and colleagues from 1995 that showed a very high heritability for Autism (92% of monozygotic twins were concordant for Autism but only 10% of dizygotic twins were concordant), the present study found that genetic heritability accounted for only 37% of the variance in Autism and shared environment factors accounted for 55% of Autism disorders. The findings hold whether Autism is diagnosed more strictly or more broadly; when Professor Hallmayer’s team examined Autism Spectrum Disorder cases rather than more narrowly defined cases, the percentages went up to 38% genetic and 58% shared environment contributions.
Continue reading ‘Is environment > genetics in cause of Autism?’

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Cog mod for PTSD

In the Journal of Behavior Therapy and Experimental Psychiatry, Joanna Kowalik and colleagues reported that their review of studies on the use of cognitivie behavioral therapy for treating posttraumatic stress disorder (PTSD) revealed that cog-mod appears effective in changing raters’ responses on some of the widely used scales of the Child Behavior Checklist. However, the results of their literature review are not as powerful as one might hope, given the small number of studies and substantial variability in the studies themselves.

Abstract

Background and objectives There is no clear gold standard treatment for childhood posttraumatic stress disorder (PTSD). An annotated bibliography and meta-analysis were used to examine the efficacy of cognitive behavioral therapy (CBT) in the treatment of pediatric PTSD as measured by outcome data from the Child Behavior Checklist (CBCL).

Method A literature search produced 21 studies; of these, 10 utilized the CBCL but only eight were both 1) randomized; and 2) reported pre- and post-intervention scores.

Results The annotated bibliography revealed efficacy in general of CBT for pediatric PTSD. Using four indices of the CBCL, the meta-analysis identified statistically significant effect sizes for three of the four scales: Total Problems (TP; ?.327; p = .003), Internalizing (INT; ?.314; p = .001), and Externalizing (EXT; ?.192; p = .040). The results for TP and INT were reliable as indicated by the fail-safe N and rank correlation tests. The effect size for the Total Competence (TCOMP; ?.054; p = .620) index did not reach statistical significance.

Limitations Limitations included methodological inconsistencies across studies and lack of a randomized control group design, yielding few studies for meta-analysis.

Conclusions The efficacy of CBT in the treatment of pediatric PTSD was supported by the annotated bibliography and meta-analysis, contributing to best practices data. CBT addressed internalizing signs and symptoms (as measured by the CBCL) such as anxiety and depression more robustly than it did externalizing symptoms such as aggression and rule-breaking behavior, consistent with its purpose as a therapeutic intervention.

Because they are integrating so few studies it is very difficult to have a sensitive meta-analysis in this case. However, that Professor Kowalik and her collaborators found differences at all is encouraging. I hope they’ll continue to follow this literature. Also, I hope researchers will be using other measures of outcomes and that those other measures will be examined in future integrative literature reviews, too.

Kowalik, J., Weller, J., Venter, J., & Drachman, D. (2011). Cognitive behavioral therapy for the treatment of pediatric posttraumatic stress disorder: A review and meta-analysis. Journal of Behavior Therapy and Experimental Psychiatry, 42, 405-413. doi:10.1016/j.jbtep.2011.02.002

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FC goes to MIT

According to Robert T. Carroll at the Skeptic’s Dictionary, several people associated with facilitated communication have been working with Professor Rosalind W. Picard of the Affective Computing research group at the Massachusetts Institute of Technology (MIT) Media Lab. In “Facilitated Communication Infiltrates MIT’s Media Lab,” Mr. Carroll reports about Professor Picard’s connections with supporters of what he says is now called “supported typing.”

Why would MIT’s Media Lab be involved with something that is clearly a discredited pseudoscience?

MIT’s Media Lab’s involvement with FC goes back several years.

A private FC conference occurred in May 2008 involving Douglas Biklen, Head of the FC Institute, Rosalind Picard, Head of the MIT Affective Computing Group, Margaret Bauman of the Massachusetts General Ladders Program (a long time FC advocate; she tried to get the New England Center to use FC in the early 1990s; she just got $29 Million from Nancy Lurie Marks a major, major FC supporter), Martha Herbert of Harvard Medical (supports the view that autism is a movement disorder, justifying FC)…That meeting seems to have been designed to establish liaisons between FC advocates in the Media Lab, the Ladders Program at Massachusetts General, the Syracuse FC Institute [now the Institute on Communication and Inclusion], and the University of Buenos Aires (i.e., Daniel Orlievsky), and cannot be unconnected to this upcoming event in July.

Mr. Carroll has much more on this. Given the problems with FC, one must wonder what a prestigious institution such as MIT would gain from such a connection. Is it possible that the researchers are legitimately investigating FC?

What about other developments from this lab? How valuable are they? One can’t dismiss them simply by association. Does this bracelet that seems to capture galvanic skin response and feed it wirelessly to computers actually have much value? Tracking GSR across time does look interesting to me. What clinical applications might emerge? Will they be beneficial?

You can read Facilitated Communication Infiltrates MIT’s Media Lab in its entirety on the Skeptic’s Dictionary.

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Virginia campaign promotes action agenda

The Campaign for Children’s Mental Health outlined an agenda for improving mental health policy for children and youths in the US commonwealth of Virginia on 14 June 2011. The “Action Agenda” expresses the need for Govenor Bob McDonnell to exert leadership in three policy areas so that the problems of 100,000 minors with mental health issues are addressed:

  • Children with mental health disorders and their families need to have a full array of high quality treatment and support services in their own communities, no matter where in Virginia they reside.
  • Children with serious mental health disorders who require public sector services need to have access to the same array of services regardless of payment source or custody status in order to maximize the impact of and curb inappropriate use of public dollars in the treatment system.
  • Children with mental health disorders and their families should be recognized and included as experts on their own and their children’s treatment needs.

Visit the 1 in 5 Website (see it over in the sidebar, too) and download the full statement of the Action Agenda.

I am very glad to have and I hope others will join me in signing a petition to support this effort. Isn’t it great to have this effort right here in Virginia? Do you have similar efforts in the area where you live?

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50 Cent’s anti-bullying book

According to the Publishers Weekly, rap artist 50 Cent is writing a book with an anti-bullying theme.

50 Cent, whose book Playground was bought by Razorbill publisher Ben Schrank, will address the topic of bullying in novel format; the book is planned to be a first person fictional account and the title will be edited by Laura Arnold. Marc Gerald at the Agency Group brokered the world rights deal, and Playground is scheduled for January 2012.

Other news reports indicate that the novel will be aimed at the young-adult market and that it draws on Mr. Cent’s personal experiences as a youth. The lead character is a 13-year old “who finds redemption as he faces what he’s done.”

Here’s the link to the Publishers Weekly story; the quote is at the bottom of it. In an interesting twist, as I searched for the original press release I found that the blog on Mr. Cent’s Web site quotes a story from MTV about the book. Here’s a link to that post. I would have thought that the rapper’s site would have had the authoritative source…?

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EBD historic foundations

Many readers of EBD Blog will probably be interested in a three-part series about the history of behavior disorders that is currently appearing in the Journal of Emotional and Behavioral Disorders. As editor Doug Chaney noted in an e-mail message recently, the series was

Written by Drs. Kaff, Teagarden, and Zabel at Kansas State University. They interviewed the founding leaders of the field of emotional/behavioral disorders over the past two years as part of the Janus Oral History Project, which is sponsored by the Midwest Symposium for Leadership in Behavior Disorders (MSLBD). MSLBD is an independent, non-profit organization that supports and fosters leadership in the field of EBD and has held an annual conference focusing on research and practice in EBD over the past 25 years. The central purpose of the Janus Oral History Project (JOHP) is to: (a) record and analyze the professional experiences of leaders in the field of special education, (b) preserve their first-hand perspectives on past and present knowledge and practice, and (c) offer informed forecasts on potential future issues and challenges to the field.

Thanks to the publisher of JEBD, MSLBD, and other associated with the project (here, here!) these valuable looks at the foundational period of the study of EBD are available for free on the Internet. They are worthwhile resources for scholars and students as well as interested lay readers. Here’s a link to the first installment. Watch for subsequent installments.

Kaff, M. S., Teagarden, J. M., & Zabel, R. H. (2011). An oral history of first-generation leaders in education of children with emotional/behavioral disorders, part 1: The accidental special educator. Journal of Emotional and Behavioral Disorders, 19(2).

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CCBD 2011 conference call for papers

The Council for Children with Behavior Disorders of the Council for Exceptional Children has issued a call for proposals for its pending conference scheduled for the fall of 2011. The meeting is slated for 22-24 September in New Orleans (LA, US). Here’s is the announcement.

Facing the Future – Building on the Past: Celebrating CCBD’s 50th Anniversary
September 22-24, 2011 New Orleans, LA
Join us this in New Orleans this Fall for a professional conference highlighting effective practices for continuing to improve outcomes for challenging students. The conference has been developed for professionals, students and parents who have an interest in education, mental health, juvenile justice or related fields.

For conference information including the call for proposals, registration, hotel reservations and marketing opportunities:

Call for proposals open now on line until June 1.

Featured topics will include:
· Assessment
· Autism Spectrum Disorders
· Bullying, Aggression & Safe Schools
· Classroom Management
· Collaboration & Co-teaching
· Dropout Prevention & Preparing for Adult Life (Transition)
· Early Intervention
· Ethical Issues in the Schools
· Juvenile Justice
· Law & Legal Issues
· Leadership – Making a Difference in Schools
· Professional Development
· Research – Current & Future Directions
· School-based Mental Health
· Social Emotional Learning
· Special Education in Alternative/Special Schools
· Teaching Core Academics

Additional information about the conference will be posted later at this site.

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New review of early intervention in Autism from Pediatrics

Zachary Warren and colleagues from Vanderbilt University published a review of 34 studies of early intervention efforts with children who have Autism in Pediatrics in April of 2011. The authors interpret their results as providing tempered supported for the the early intervention methods often described as “UCLA,” “Lovaas–based,” “EIBI,” or the “Early Start Denver Model.” Here is the abstract.

A Systematic Review of Early Intensive Intervention for Autism Spectrum Disorders
by
Zachary Warren, Melissa L. McPheeters, Nila Sathe, Jennifer H. Foss-Feig, Allison Glasser and Jeremy Veenstra-VanderWeele

CONTEXT: Early intensive behavioral and developmental interventions for young children with autism spectrum disorders (ASDs) may enhance developmental outcomes.

OBJECTIVE: To systematically review evidence regarding such interventions for children aged 12 and younger with ASDs.

METHODS: We searched Medline, PsycINFO, and ERIC (Education Resources Information Center) from 2000 to May 2010. Two reviewers independently assessed studies against predetermined inclusion/ exclusion criteria. Two reviewers independently extracted data regarding participant and intervention characteristics, assessment techniques, and outcomes and assigned overall quality and strength-of evidence ratings using predetermined criteria.

RESULTS: Thirty-four unique studies met inclusion criteria. Seventeen studies were case series; 2 were randomized controlled trials. We rated 1 study as good quality, 10 as fair quality, and 23 as poor quality. The strength of the evidence overall ranged from insufficient to low. Studies of University of California Los Angeles/Lovaas–based interventions and variants reported clinically significant gains in language and cognitive skills in some children, as did 1 randomized controlled trial of an early intensive developmental intervention approach (the Early Start Denver Model). Specific parent-training approaches yielded gains in short-term language function and some challenging behaviors. Data suggest that subgroups of children displayed more prominent gains across studies, but participant characteristics associated with greater gains are not well understood.

CONCLUSIONS: Studies of Lovaas-based approaches and early intensive behavioral intervention variants and the Early Start Denver Model resulted in some improvements in cognitive performance, language skills, and adaptive behavior skills in some young children with ASDs, although the literature is limited by methodologic concerns.

Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-VaderWeele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127, e1303–e1311. Published online Apr 4, 2011; DOI: 10.1542/peds.2011-0426

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Secretin still does not help

Shanthi Krishnaswami and colleagues examined the research about the effects of using secretin as a theraputic agent for the treatment of Autism. They found that there were none of the seven randomized controlled trials showed beneficial effects and, therefore, concluded that secretin does not merit consideration as a therapy. Their finding, which employs rigorous methods, is consistent with earlier analyses that examined more preliminary research and which I have reported previously (as far back as the 1990s).

A Systematic Review of Secretin for Children With Autism Spectrum Disorders
by
Shanthi Krishnaswami, Melissa L. McPheeters and Jeremy Veenstra-VanderWeele

CONTEXT: As many as 1 in every 110 children in the United States has an autism spectrum disorder (ASD). Secretin is 1 of many medical treatments studied for treating the symptoms of ASDs, but there is currently no consensus regarding which interventions are most effective.

OBJECTIVE: To systematically review evidence regarding the use of secretin in children with ASDs who are aged 12 years and younger.

METHODS: We searched the Medline, PsycINFO, and ERIC (Education Resources Information Center) databases from 2000 to May 2010 and reference lists of included articles. Two reviewers independently assessed each study against predetermined inclusion/exclusion criteria. Two reviewers independently extracted data regarding participant and intervention characteristics, assessment techniques, and outcomes and assigned overall quality and strength-of-evidence ratings on the basis of predetermined criteria.

RESULTS: Evidence from 7 randomized controlled trials supports a lack of effectiveness of secretin for the treatment of ASD symptoms including language and communication impairment, symptom severity, and cognitive and social skill deficits. No studies have resulted in significantly greater improvements in measures of language, cognition, or autistic symptoms when compared with placebo; study authors who reported improvement over time did so equally for both the intervention and placebo groups.

CONCLUSIONS: Secretin has been studied extensively in multiple randomized controlled trials, and there is clear evidence that it lacks benefit. The studies of secretin included in this review uniformly point to a lack of significant impact of secretin in the treatment of ASD symptoms. Given the high strength of evidence for a lack of effectiveness, secretin as a treatment approach for ASDs warrants no further study.

Krishnaswami, S., McPHeeters, M. L., & Veenstra-VanderWeele, J. (2011). A systematic review of secretin for children with autism spectrum disorders. Pediatrics, 127, 1322-1325. DOI 10.1542/peds.2011-0428

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Autism awareness

World Autism Awareness Day is upon us. Check on it!

While you’re thinking about the topic, learn a lot by watching Fred Volkmar’s presentation about interventions for Autism: “Treatments for Autism: Overview of Model Programs.”


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Altering Autism insurance coverage legislation in VA

Writing in the Richmond Times Dispatch, Olympia Meola reported on potential changes in support for insurance coverage for therapy for children with Autism in the Commonwealth of Virginia in the US. Under the headline “McDonnell will try to amend autism bill,” Ms. Meola described developments in Governor Robert “Bob” McDonnell’s plans for altering recent legislation requiring insurance payments for treatment.

Gov. Bob McDonnell is expected today to reveal proposed changes to a bill requiring insurance coverage of autism treatments, and some could be substantial alterations to what the General Assembly passed.

Conversations were continuing as of Tuesday between the governor’s office, lawmakers and interested parties about possible changes to a measure that would require coverage of autistic children ages 2 to 6.

Advocates of the bill said some significant tweaks could be “deal breakers.”

The amendments floated in the past week range in scope, from technical to more substantial, including changes in who could supervise treatment and when the law would take effect, according to those familiar with the proposals.

Link to Ms. Meola’s story.

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