Archive | June, 2011

The White House Blog: Meeting the Needs of People with Autism

17 Jun

Below is a post from the White House blog by Kathleen Sebelius. It dates from April 25, but I thought it worth presenting here. Given that this from a government website, I feel OK copying it in whole here.

Helping every American with autism achieve their full potential is one of this administration’s top priorities. At the U.S. Department of Health and Human Services, we continue to strive to meet the complex needs of all people with Autism Spectrum Disorders (ASD) and their families. While there is no cure, early intervention is critical and can greatly improve a child’s development.

Perhaps the biggest step we’ve taken to support those affected by autism and their families happened over a year ago, with the signing of the Affordable Care Act. Now, new insurance plans are required to cover autism screening and developmental assessments for children at no cost to parents. Insurers will also no longer be allowed to deny children coverage for a pre-existing condition such as ASD or to set arbitrary lifetime or annual limits on benefits.

Also, thanks to the new law, young adults are allowed to stay on their family health insurance until they turn 26. For a young adult with autism spectrum disorder and their family, that means peace of mind. It means more flexibility, more options, and more opportunity to reach their full potential.

Ultimately, there is more support for Americans with autism than ever before. This means more promise of new breakthroughs that will help us understand autism even better. But in order to continue meeting the needs of people with autism, the Combating Autism Act must be fully reauthorized. We still have a long way to go. Working collaboratively with important partners, the Affordable Care Act and the Combating Autism Act will allow us to continue important research and develop and refine vital treatments.

There are still many unknowns. However, one thing is certain. We will continue to work harder than ever to find solutions and provide support to individuals with ASD and their families. Together, we can help reduce disparities and allow everyone to actualize their greatest potential.

http://www.whitehouse.gov/sites/all/modules/swftools/shared/flash_media_player/player5x2.swf

Mark Geier: My therapy is unconventional, but it works

17 Jun

Dr. Mark Geier is appealing the suspension of his medical license. The license suspension order includes (as summarized by Kathleen Seidel at Neurodiversity.com):

• In six out of nine of these cases, the board determined that the children were misdiagnosed with precocious puberty. Children were diagnosed with precocious puberty without the benefit of a physical examination; some were too old to qualify for the diagnosis.

• Medical records and medical necessity letters prepared by Dr. and Mr. Geier indicated that children were diagnosed not only with precocious puberty, but also with pituitary dysfunction, insomnia, aggression, mitochondrial disorder, metabolic dysfunction, and “heavy metal toxicity” when neither test results nor parent reports suggested anything of the sort.

• In one case, the only record of the diagnosis of precocious puberty was a code number entered onto a standing order for lab tests. In another, no note was made in the medical records of the date the child began treatment with Lupron. Yet another patient’s file contained no indication that Dr. Geier reviewed any of the results of the numerous, burdensome diagnostic tests he had ordered.

• The order describes claims submitted to at least one insurance company for a psychiatric interview and “prolonged evaluation and management” services that were never rendered.

• The order further describes an occasion when David Geier, who is not licensed to practice medicine, conducted a medical evaluation and diagnostic tests, made diagnoses, and recommended treatments for an autistic boy in Dr. Geier’s absence.

• Additionally, the Board determined that Dr. Geier misrepresented his qualifications as a geneticist, and misrepresented the ability of his Institutional Review Board to conduct oversight of his research.

Dr. Geier has taken his case to the public in an opinion piece in the Baltimore Sun: Autism doctor: My therapy is unconventional, but it works. He certainly has the right to present his case to the Sun, and while I would not have published the letter were I editor, the Sun is within its rights to host the letter. I am within my rights to comment on the letter, and I took that opportunity in the comments as you will see (complete with typos) if you follow the link.

Dr. Geeir opens with a simple statment “If there’s a single statement that everyone who works in the field of autism can agree on, it’s that there is so much that we still don’t know.” This is incomplete: there is much we do know. We know that the theories Dr. Geier has proposed are wrong. We know that the rise in autism is not due to mercury. Certain tests should be performed before a child is diagnosed with precocious puberty. Tests which the charges indicate Dr. Geier failed to do on many occasions. We know that treatment for precocious puberty should stop at an age when puberty is expected. Dr. Geier is charged with initiating and/or continuing treatment in children too old to be diagnosed with precocious puberty.

Dr. Geier has published many papers in the literature, this is true. These papers have been widely criticized by researchers. Not because the ideas are unconventional, but because the ideas are ill founded and the experimental methods are poor. Dr. Geier has been described as “intellectually dishonest” for his work as an expert witness. The Institute of Medicine has referred to Dr. Geier’s papers as suffering from “serious methodological flaws and their analytic methods were nontransparent, making their results uninterpretable”

There is much we do not know. On thing we do know: we deserve better than Mark Geier

Perhaps it is the frustration of having read the recent article by the Geiers in the new “autism science digest”. Perhaps it is the fact that I listened to a podcast interview with the Geiers in preparing my recent response to the article. Perhaps it is just the years of reading bad science and waiting for someone to act against these people, but my patience is worn rather thin, as you will see in the comments.

AutismOne throws their support behind the Geiers in “Autism Science Digest”

16 Jun

When news came out about the legal troubles Mark and David Geier are facing, there was some hope expressed that maybe, just maybe, some of the groups that have supported the father/son team would take the chance to distance themselves. The Generation Rescue/Autism One conference was at that time still in the future, and the Geiers were scheduled to speak. Dr. Mark Geier had his license suspended for the “therapy” he was planning to tout at AutismOne, and that David Geier was facing the charge of practicing medicine without a license.

As we have seen, the optimism was ill founded. The Geiers presented their talk at AutismOne. And, as it turns out, AutismOne had already in-press their new magazine, the “Autism Science Digest”, which included an article by the Geiers. Someone forwarded it to me and it is frankly painful to read.

It is a nice glossy advertisement for the Geiers and their testosterone/autism theory. I don’t throw that out lightly. It is pseudo-science generated to promote an idea. and idea which really doesn’t stand up to real science.

For example, they present the article like a science study, complete with references. It makes it seem as though what they say is backed up by legitimate science. But citations do not make a study. Especially when they are misused.

It is difficult to describe the Geier hypothesis. This is for two reasons. First, it is hard to accept that they actually believe their own work, it is so bad. Second, it has morphed dramatically over the few years of its existence.

Let me explain. When they first proposed their idea that testosterone was somehow important, they claimed that testosterone was binding mercury in the brain, rendering it difficult to remove through chelation. If you listen to Lisa Sykes talk about the Geiers (the Rev. Sykes being a major spokesperson for the Geiers over the years), she tells how David Geier told her, “We figured something new out…..we think we can get rid of the mercury by lowering the testosterone”.

By the way, the Rev. Sykes mentions that she tested her child for testosterone. The range was 0 to 25 and her kid was “at the top of the range”. Not above it. At the top. As in, high but within normal.

If you listen to the Geiers speak now (and, again, I find this painful to do), they are still pushing the idea that mercury is the main causation factor in autism. But, here’s the shift with Lupron, they are downplaying the idea that is part of a chelation protocol. It’s all about reducing testosterone.

Is anyone surprised that if you change the testosterone levels in a person you will see changes in behavior? Does this have anything to do with autism? Does it have anything to do with mercury?

The Geier article relies heavily on the work of Dr. Simon Baron-Cohen’s group. They cite Dr. Baron-Cohen’s group 5 times in their article. It makes the article look legitimate. The first paragraph states, “In fact, ASD’s have even been described as the result of an “extreme male brain” by psychologist Dr. Simon Baron-Cohen”.

At this point, it is worth recalling what Dr. Baron-Cohen had to say about the work the Geiers are doing:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

“The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” he said.

Some how “fills me with horror” was not included in the Geier article.

Dr. Baron-Cohen’s theories include the idea that fetal testosterone levels affect the development of the brain. This is a prenatal process. The Geier notion is that autistics have high testosterone levels (even though they have documented cases of children they treated who do not have high levels). It is intellectually (and otherwise) very dishonest to claim that the work of Dr. Baron-Cohen in any way supports the Geier’s application of the drug Lupron to autistic children.

It isn’t just Dr. Baron-Cohen’s work that is misused to sell this therapy. The Geier’s write, “”Also, some investigators have found that leuprolide acetate administration resulted in improvements in cognition” ( Bryan et al. , 2010)”

Here is the abstract for Bryan, et al.:

Down-regulation of serum gonadotropins is as effective as estrogen replacement at improving menopause-associated cognitive deficits.
Bryan KJ, Mudd JC, Richardson SL, Chang J, Lee HG, Zhu X, Smith MA, Casadesus G.
Source

Department of Neurosciences, Case Western Reserve University, Cleveland, Ohio, USA.
Abstract

Declining levels of estrogen in women result in increases in gonadotropins such as luteinizing hormone (LH) through loss of feedback inhibition. LH, like estrogen, is modulated by hormone replacement therapy. However, the role of post-menopausal gonadotropin increases on cognition has not been evaluated. Here, we demonstrate that the down-regulation of ovariectomy-driven LH elevations using the gonadotropin releasing hormone super-analogue, leuprolide acetate, improves cognitive function in the Morris water maze and Y-maze tests in the absence of E2. Furthermore, our data suggest that these effects are independent of the modulation of estrogen receptors alpha and beta, or activation of CYP19 and StAR, associated with the production of endogenous E2. Importantly, pathways associated with improved cognition such as CaMKII and GluR1-Ser831 are up-regulated by leuprolide treatment but not by chronic long-term E2 replacement suggesting independent cognition-modulating properties. Our findings suggest that down-regulation of gonadotropins is as effective as E2 in modulating cognition but likely acts through different molecular mechanisms. These findings provide a potential novel protective strategy to treat menopause/age-related cognitive decline and/or prevent the development of AD.

The short version: the authors removed the ovaries from mice, putting them into a menopause state. They found that these mice decline cognitively, but that they can treat this with a leuprolide acetate (a drug similar to lupron).

Yes, somehow the animal model for autism to the Geiers are post-menopausal mice.

This study has nothing to do with improving cognition in children, or autistic children in particular. Don’t take my word for it. I contacted one of the researchers who wrote the paper:

Well… The principle of gonadotropins working on cognition in menopausal women or patients with AD has nothing to do with autism nor with improving cognition via the depletion of gonadal steroids such as testosterone or estrogen. For example, we know that when women that are in reproductive age (and men to a lesser extend) are given leuprolide their cognition is impaired, indicating that gonadal steroids are important for cognition. However, we have shown that after menopause, gonadal steroids can be by-passed by downregulating gonadotropins to improve cognition.

If you want the message in a single sentence:

The beneficial effects of leuprolide on cognition in ovariectomized (menopausal) female mice has nothing to do with the treatment of autism in children.

Another study the Geiers cite: “Increased marble-burying behavior in ethanol-withdrawal state: Modulation by gonadotropin-releasing hormone agonist”

No, I am not kidding. It is a study about alcoholic mice burying marbles. Here’s the abstract:

A characteristic behavior in alcohol abstinence state indicates the possibility of obsessive–compulsive behavior in alcoholics. Ethanol is known to reduce hypothalamic synthesis, release, and mRNA expression of gonadotropin-releasing hormone (GnRH) that modulates serotonergic, dopaminergic, and glutamatergic systems, which experience adaptive changes on chronic exposure to ethanol. Such changes are also evident in obsessive–compulsive disorder. Therefore, it was proposed to investigate the effect of ethanol-withdrawal on marble-burying behavior in mice, particularly because it simulates some aspects of obsessive–compulsive behavior; further, the influence of GnRH agonist was studied on the same. Ethanol-withdrawal state was induced after its chronic administration, and marble-burying behavior was observed at 0, 6, 24, 48, and 96 h interval. Further, the influence of leuprolide—a GnRH agonist (50–600 ?g/kg, s.c.) or fluoxetine (5–30 mg/kg, i.p.) was investigated on ethanol-withdrawal-induced changes in marble-burying behavior. The results indicated that ethanol-withdrawal led to a gradual increase in marble-burying behavior upto 48 h with peak at 24 h interval. Administration of leuprolide (100–600 ?g/kg, s.c.), 30 min prior to 24 h interval, dose dependently reduced ethanol-withdrawal-induced increase in marble-burying behavior, and this effect was comparable to that of fluoxetine (15 and 30 mg/kg, i.p.). Further, twice daily administration of leuprolide (50 ?g/kg, s.c), concomitant with ethanol, prevented the gradual increase in marble-burying behavior after ethanol-withdrawal and this effect was comparable to fluoxetine (5 mg/kg, i.p.). In conclusion, ethanol-withdrawal on chronic administration increases marble-burying behavior in mice; its development and expression is attenuated by leuprolide.

The researchers gave mice alcohol over a long period. When they made the mice stop, cold turkey, they exhibited behaviors such as burying marbles. While the mice are going through the first stages of withdrawl, the researchers gave them a lupron like drug and found that the mice didn’t bury marbles as much.

Once again, who finds this to be a valid animal model for autism? Is your child an alcoholic, marble-burying mouse?

But you don’t see this if you just read the article. What you read is, “similarly, other investigators have used an anti-androgen medication called leuprolide acetate, which reduces the production of male hormones, in the treatment of anxiety, hyperexcitability, depression, impaired social interaction, and obsessive compulsive behaviors in laboratory animal species”.

The Geiers have obviously felt the need to respond to the criticism that they are using a drug used for chemical castration. They write

Finally, the administration of anti-androgen medications to individuals diagnosed with an ASD is not intended to deprive the individual of their sexuality nor to alter their normal developmental trajectory, but rather to regularize a process that was proceeding in an abnormal fashion and producing adverse effects and, thereby, improve the health of the patient and reduce the clinical symptoms associated with abnormally elevated androgen levels.

Here is an example patient from the patent application the Geiers submitted (US20070254314A1: Methods of treating autism and autism spectrum disorders):

Laboratory analyses did not reveal elevated levels of mercury or elevated levels of at least one androgen. Specifically, undetectable levels of mercury were present in Child D’s urine and minimal levels of mercury were in Child D’s blood (1.5 ?g/L, reference range=0.0-14.9 ?g/L). Additionally, analyses of Child D’s blood androgen metabolites revealed a serum testosterone=153 ng/dL (age- and sex-adjusted LabCorp reference range=0-350 ng/dL) and serum/plasma DHEA=291 ng/dL (age- and sex-adjusted LabCorp reference range=183-383 ng/dL) within their respective reference ranges.
After extensive discussions with his parents concerning the risks, benefits, and alternative treatments available, a decision was made to place Child D on a course of LUPRON® therapy.

Yes, Child D has testosterone well within the normal level. And, yet, the child was treated with Lupron. How, exactly, does this fit with improving “…the health of the patient and reduce the clinical symptoms associated with abnormally elevated androgen levels”?

Also, in the Autism Science Digest article itself, the authors note:

The child underwent antiandrogen therapy until the age of 13, when he entered puberty at an age typical of his sibling

Age 13 is within the normal range to start puberty. So is 9. Why did they delay this child 4 years? As of age 9, the child was not in central precocious puberty.

The Geiers make this comment in their recent article:

Two months prior to his 9th birthday, he was given a test dose of leuprolide acetate. After administration, he went outside and began to swing on a tire swing using his feet to push – a neurotypical behavior never seen before.

Dramatic, isn’t it? First shot, and the kid goes outside and uses the swing for the first time. This caught my eye, because they mention swinging in their patent. In the patent they note, “Within a few days of the second shot of LUPRON DEPOT®, Child X learned to swing by himself using leg timing for propulsion”

I’m betting that this is the same kid. If so, did the kid get his first shot and go outside and start swinging, or did he go a few days after his second shot?

One issue the Geiers (and others) have faced is inflation of credentials. David Geier, for example, listed himself as a “diagnostician” to get on the Maryland Autism Commission. The Autism Science Digest article is no different. Mr. Geier gives as his credentials that he “Has been a research scientist at the National Institutes of Health in the laboratory of Biochemical Genetics.”

Take a moment, if you will, and think what that statement means to you, ” research scientist at the National Institutes of Health in the laboratory of Biochemical Genetics”. I ask you to do this before we see what his job really was.

We can read Mr. Geier’s resume here, which lists his experience including:

I. T. R. A. Summer Fellow Appointment at The National Institutes of Mental Health (under Laboratory Chief [Redacted] of The Laboratory of Biochemical Genetics)
Projects:
(1) Protein Gel and Phage Research

That was in the summer of 1998. That’s the summer before he entered college, if I read the rest of his resume correctly. At this point I have to do something I rarely do, point out my own credentials. I’ve been a summer intern. I’ve been a research scientist. I’ve been a research scientist supervising summer interns. While I find the work of my summer interns has been valuable and of high quality, they weren’t “research scientists” in the way that is clearly implied in the article. Sure, it would have taken more space to write, “He was an intern the summer of his freshman year at the NIH”, but it would have made his position much more clear.

Dr. Mark Geier lists as part of his credentials, “His extensive research has resulted in him being invited to address the Institute of Medicine at the U.S. National Academy of Sciences on six occasions.” I find it remarkable that he uses this to build credibility, given the fact that the IOM clearly was not impressed by his work.

Let’s look at what the Institutes of Medicine had to say about the Geiers’ research:

The first was an ecological study (Geier and Geier, 2004a) that reported a potential positive correlation between the number of doses of measles-containing vaccine and the cases of autism reported to the special education system in the 1980s. The second was a study of passive reporting data by the same authors (Geier and Geier, 2003c) that reported a positive correlation between autism reports in the Vaccine Adverse Events Reporting System (VAERS) and estimated administered doses of MMR. However, these two studies are characterized by serious methodological flaws and their analytic methods were nontransparent, making their results uninterpretable, and therefore noncontributory with respect to causality (see text for full discussion).

It isn’t news that the Geiers are poor scientists. It isn’t news that the Geiers have been called out for their ethical lapses multiple times over the years. It is fairly recent news that the Geiers have actually faced charges. And, yet, AutismOne and Generation Rescue continue to support this team by inviting them to speak at conferences and giving them space in their magazines to promote the same bad medicine that has cost Dr. Geier his license.

Dr. Geier has lost his license to practice medicine. To which I can only say, what took so long? What do they have to do to lose the support of the alternative medical community?

Online Release of 2009 IACC Portfolio Analysis Report

16 Jun

Below is the latest email announcement from the Interagency Autism Coordinating Committee (IACC). This is the committee which sets out the strategic plan for autism research funding in the United States. The IACC has published the latest portfolio analysis of autism research. Also, members of the IACC participated in the IMFAR (International Meeting for Autism Research) conference. This includes Tom Insel, director of the National Institute of Mental Health (NIMH) and the chair of the IACC.

On behalf of the Interagency Autism Coordinating Committee (IACC), The Office of Autism Research Coordination (OARC) is pleased to announce that the 2009 IACC Autism Spectrum Disorder Portfolio Analysis Report is now posted online on the IACC website. This report provides a comprehensive analysis of the 2009 autism spectrum disorder (ASD) research portfolios of U.S. Federal agencies and private organizations as well as an overview of progress being made in implementation of the IACC Strategic Plan for Autism Spectrum Disorder Research. In the near future, the IACC/OARC will be releasing a comprehensive listing of the individual projects related to each question and objective of the Strategic Plan containing detailed descriptive and funding information.

In addition to the 2009 Portfolio Analysis Report, please see the two latest articles about recent activities of the IACC:

· 2011 International Meeting For Autism Research Features Opening Address from IACC Chairman Insel and Contributions from IACC Members

– Click here for Dr. Insel’s slides from IMFAR, which contain information about NIH’s implementation of the IACC Strategic Plan

· IACC Members Participate in White House Autism Awareness Month Conference

– Links to video footage from the meeting, Secretary Sebelius’ speech and President Obama’s April proclamation can be found at the end of the article

The IACC and OARC greatly appreciate the contributions of each agency and organization that participated in the development of the 2009 IACC ASD Portfolio Analysis Report. Thank you!

Sincerely,

The Office of Autism Research Coordination

NIH Research Matters: Study Undermines XMRV Connection to Human Disease

15 Jun

Study Undermines XMRV Connection to Human Disease is an article up on the U.S. National Institutes of Health “Research Matters” site. xenotropic murine leukemia virus-related virus (XMRV) has recently been hypothesized to be involved in chronic fatigue syndrome, prostate cancer and, as you guess from the discussion here at Left Brain/Right Brain, autism.

The discussion below (copied in whole from the NIH website) does not touch on autism, but does give some insight into how the false-positive link to prostate cancer came about, and how the link to chronic fatigue syndrome is not standing up to scrutiny.

The retrovirus previously tied to prostate cancer and chronic fatigue syndrome (CFS) is unlikely to be responsible for either, according to new research. The virus appears to have arisen in the laboratory. The association with human disease was probably due to contamination of samples.


Transmission electron micrograph of round virus particles.
XMRV particles, as visualized by transmission electron microscopy. Photo by Dr. Ila R. Singh, University of Utah

The xenotropic murine leukemia virus-related virus (XMRV) was first found in samples from a human prostate tumor in 2006. It was reported to be present in 6% to 27% of human prostate cancers. A study in 2009 also found XMRV in the blood of 67% of people with CFS. However, these results were challenged by several studies that failed to detect XMRV in samples from people with prostate cancer or CFS.

A research team led by Dr. Vinay Pathak of NIH’s National Cancer Institute (NCI) set out to investigate whether XMRV could have originated in the laboratory. When studying cancer, researchers often graft human tumors onto mice to create what are called xenografts. The scientists examined the process used to create the xenografts as well as the subsequent procedures that led to the identification of XMRV.

In the online edition of Science on June 2, 2011, the researchers reported that the initial prostate tumor xenografts didn’t contain XMRV, but that later tumors derived from them did. The virus appears to have infected the human tumor cells while they were in mice.

Closely related murine leukemia viruses are known to cause cancers and other diseases in mice. In the laboratory, these viruses can infect cells from other species, including humans. The team did a genetic search in the strains of mice previously used for xenografting the prostate tumor cells. They detected 2 previously undescribed viruses, which they dubbed PreXMRV-1 and PreXMRV-2. Genetic comparison of the PreXMRV-1 and PreXMRV-2 sequences revealed that each has a long stretch of DNA that’s nearly identical to XMRV.

The scientists postulate that genetic recombination between these 2 viruses generated XMRV while human prostate tumor cells were being grown in a mouse. The recombination—a common outcome when cells are infected by 2 or more viruses—likely occurred sometime between 1993 and 1996. The recombined virus then infected the human tumor cells.

Another report in the same issue of Science failed to find an association between XMRV and CFS, even in the same patients from the 2009 study. The research team found evidence of sequences from the 2 mouse viruses in commercial laboratory reagents. They concluded that the previous results likely stemmed from laboratory contamination.

“After the reports of XMRV in human prostate cancer, and later of XMRV in people with CFS, retrovirologists all over the world were excited to explore its role in human infection and disease,” Pathak says. “The results published today are not what we would have expected, but due to the time and resources dedicated to the understanding of this virus by researchers at NCI and NIH as well as others, scientists can now concentrate on identifying the real causes of these diseases.”

“Taken together, these results essentially close the door on XMRV as a cause of human disease,” says coauthor Dr. John Coffin, special advisor to the NCI director and a professor at Tufts University School of Medicine. Some evidence still suggests that these diseases may stem from viruses, but not from XMRV.

Dads and Grads

15 Jun

June is the season of graduations. It is also the time for Father’s Day (at least in the U.S.), which occurs this Sunday. Around this time we see a lot of ads for “Dads and Grads”, mostly by people selling greeting cards and presents.

I’d like to send out congratulations to the grads out there. I’d like to send out a good word to fellow Dads out there. I hope Sunday is a great day for you.

I’d really like to take the opportunity to single out: autistic grads and autistic dads. Autistic grads: congratulations. I was reminded of the “dads and grads” season by the story of an autistic graduate who is absolutely one of my heroes. I’ve never met the person, but that person inspires me in ways I never knew possible. Autistic dads: I’ve “met” some of you online, here and elsewhere. I’ve spoken to some of you on the phone and in person. I wish you all an especially good father’s day.

Autistic moms: sorry I missed a message for Mother’s Day. Completely an oversight on my part as you are also a great inspiration to me.

Use of school recess time in the education and treatment of children with autism spectrum disorders: A systematic review

14 Jun

Use of school recess time in the education and treatment of children with autism spectrum disorders: A systematic review is, as you will see, a small study on what is a relatively unstudied area: recess as part of the educational day for autistic students. This caught my eye for a simple reason: I think a lot about recess. I think about special education kids, kids who are working really hard, who need the break that recess provides as much or more than anyone.

Here is the abstract:

School recess is an opportunity to include students with autism spectrum disorders (ASD) with their typically developing peers and is a setting in which instruction can occur. However, the educational opportunities for children with ASD within recess are often overlooked and recess time is being reduced or eliminated in the United States. This review involved a systematic search and analysis of 15 studies that utilized recess to implement academic, social, or behavioral interventions for students with ASD. Each identified study that met pre-determined inclusion criteria was analyzed and summarized in terms of: (a) participant characteristics, (b) intervention procedures, (c) dependent variables, and (d) intervention outcomes. This review has three main aims: (a) to evaluate and synthesize the evidence-base, (b) to inform and guide teachers interested in utilizing recess time for educational purposes, and (c) to stimulate and guide future research in this area. Results demonstrate that recess time can indeed be used to teach target behaviors to students with ASD.

Here is the first part of the conclusion

Systematic search procedures identified 15 studies that used recess time to deliver intervention to preschool and elementary school students with ASD. Summaries of the studies revealed that a variety of different interventions have targeted a range of behaviors including challenging behavior, social skills, play, and communication. The most common dependent variables were social skills, and the most common intervention component involved typically developing peers serving as models of target behavior or as therapists with an active role in prompting and reinforcing target behaviors (e.g., McGee et al., 1992). Overall, the existing literature base is perhaps best described as limited given the paucity of studies and the relatively low number of participants (N = 46). However, despite these limitations several important points do emerge.

Baseline levels of dependent variables across the included studies demonstrate that, prior to intervention, students with ASD engaged in high levels of stereotypy and challenging behavior and low levels of appropriate play and social interaction. Therefore, unlike typically developing students who benefit simply by being given access to recess (e.g., Pellegrini & Smith, 1993), students with ASD may need additional supports in order to benefit form educational and social opportunities on the playground ([Lang et al., 2009a], [Lang et al., 2009b] and [Lang et al., 2009c]). Consequently, if a student lacks the skills necessary to meaningfully participate in recess, goals and objectives related to recess should be included in their individualized education plans.

OK, even as a review, where they pool data from multiple other studies, this is small: 46 participants.

The authors note that (a) recess is important for kids, especially younger children and (b) recess time seems to be declining in general (possibly due to the no child left behind laws in the U.S.).

I really have to pose the question: how much is recess valuable precisely because it is self-directed time? How do you define if “a student lacks the skills necessary to meaningfully participate in recess”? If a typical child spends recess in a corner of the playground reading a book or doing homework, is that a meaningful participation in recess? If an autistic kid needs that time to blow off steam in some other way, is that “meaningful”? Who defines “appropriate play”? If a child, say, spends recess screaming–is that “inappropriate play” or is that a sign that the classroom environment may be overstressing the child? Sure, if a student has the desire, but not the skills, to use recess for social interaction, let’s see about supporting that. If a child enjoys working on play skills, again. But I have a bit of a reservation about making recess into more time for work.

Disabled Children: A Legal Handbook

13 Jun

This for UK parents only but if you are such – its free for PDF download from here

Recording IEP meetings, part 2

13 Jun

Last December I wrote about my search for a good recorder for IEP meetings. I’ve had a little experience since, and I thought I would offer that.

I have now used 2 solutions. First, an iPod touch. Second, a Tascam DR-05.

The iPod touch was much more useful than I expected. It was handy. I had to put it in the corner of a fairly large room (in order to be near a power outlet) and I still got reasonable clarity. There are no settings on the iPod touch, just start and stop. What bugs me is that once the screen turns off, there is no feedback that the recording is going on. Also, I tend to fidget with the iPod during meetings (looking at pictures of my kid primarily). Not ideal if it is the recorder.

I’d like to say that the second solution, the DR-05, came after much comparison of features and quality. Instead, it came from a brief visit to the local Guitar Center. The staff were friendly, but unable to tell me anything that wasn’t obvious (like price, size, number of microphones, memory…).

Here are some features that work well for me with the DR-05:

A lot of space using the least compressed mp3 format (about 12 hours). I am paranoid of running out of storage. I also dread the fatigue of listening to over compressed sound for hours while transcribing. If I could feel comfortable about capacity, I’d use .wav format files.

Easy controls. Once the basic settings are in place (such as mp3 vs. wav, audio levels, etc.), the DR-05 is very easy to use. Push the on button and it boots in about 5 seconds. Hit record once to see levels. Hit again to start. Hit stop to finish. The only thing that worries me is the possibility of leaving the recording in the initial pause state where you check the levels. This brings up the next feature I like:

A little red light that shows it is recording. This is what bothered me about the iPod. I worry about getting to the end of a meeting and finding that the recording stopped for some reason and I didn’t know. With the DR-05, this isn’t a problem.

The DR-05 is a not the smallest recorder, and not the cheapest (at about US$100). The buttons are easy to use for me, and that beats a smaller size. Without the batteries it feels like a cheap plastic shell. Yes, much of the heft of the device is 2 AA batteries.

I put fresh batteries in before a meeting, so I can’t speak to the battery life other than it is more than sufficient.

Recordings can be transferred by a USB cable. Also, you can listen directly to the DR-05 with headphones (or with the built in, tiny and quiet speaker. I’d not recommend that for transcription, though). There is a feature to loop or to go back a set period of time (between 5 and 30 seconds, user settable) which makes transcriptions easier.

The sound quality was reasonable. I have to see if there are any important statements missed in the noise.

I considered using a netbook, with or without an external mic. This has the advantage that I already own them. But it seemed cumbersome and, well, a bit odd. The Tascam is big enough without being obtrusive. The iPod was OK, and I expect most smart-phones would do the job. I just find the worries I listed above to be enough to warrant spending the $100 on the dedicated recorder.

ACTION ALERT: What Does Community Mean To You? Let Medicaid Know!

11 Jun

Here is an action alert from the Autistic Self Advocacy Network (ASAN)

What does community mean to you? For some people, this question doesn’t mean much but for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications. Last year, the State of Missouri attempted to use Medicaid dollars allocated to serving individuals with disabilities in the community for the construction of group homes on the grounds of an institution. The Center for Medicare and Medicaid Services (CMS) quite rightly refused to allow Missouri to use Medicaid HCBS funding for this plan, as the purpose of the HCBS program is to help people avoid institutionalization, not to support settings that further segregate people from their communities.

Now our friends at CMS are trying to put in place strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from occurring in the future. CMS has proposed regulations which would prevent HCBS dollars going to institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is an unprecedented opportunity for the disability community to support a real minimum standard for community living.

We need your help to make these standards a reality. CMS’ proposed rulemaking (available here) is only open for comments for four more days (it closes this Tuesday, June 14th at 5 PM) and we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.

Here’s what you can do:

1. Write in to CMS and tell them that you SUPPORT the proposed rulemaking by going to: http://www.regulations.gov/#!submitComment;D=CMS-2009-0071-0302

2. Don’t hesitate to add in your thoughts about what Community should mean and make suggestions about things that CMS could add to their proposed rulemaking. If you’re looking for ideas, don’t hesitate to use ASAN’s comments as an example. You can feel free to use our language if it makes it easier. Our comments are available here: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=153

3. Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too – the more people who write in – be they people with disabilities, parents, professionals or just supportive allies – the stronger our position will be. Help us get the word out!

Remember to write in by THIS TUESDAY June 14th at 5 PM. This is a critical opportunity to have our voices heard and we shouldn’t let it pass us by. Remember, Nothing About Us, Without Us!

Regards,
The Autistic Self Advocacy Network

← Older Entries
Newer Entries →