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Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine

20 May

The father-son team of Mark and David Geier have been charged with violations of medical practice. Mark Geier is a physician and his son, David, holds a bachelor of arts degree. Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine is the most recent post by Kathleen Seidel of Neurodiversity.com. This follows the suspension of Dr. Mark Geier (Maryland Medical Board Suspends Dr. Mark Geier’s License).

Ms. Seidel’s post follows her practice of a very thorough, well linked discussion of the topic. Here is her first paragraph (without links):

On Monday, May 16, 2011, the Maryland Board of Physicians charged Dr. Mark Geier with numerous violations of the Maryland Medical Practice Act, and charged his son, David Geier, with practicing medicine without a license. The charges come three weeks after the Board summarily suspended Dr. Geier’s license to practice medicine, in order to prevent harm to the many autistic children entrusted to his care. The suspension was upheld by a subsequent order issued by the Board on May 12, one day after a hearing at which Dr. Geier protested the suspension and submitted affidavits of support from the parents of seven of his patients. These included a statement from James B. Adams, Ph.D., a professor of engineering at Arizona State University who, like Dr. and Mr. Geier, has frequently exceeded the bounds of his academic specialty to conduct medical research premised on the discredited hypothesis that autism is a consequence of vaccine injury.

It is well worth the time to read the entire post: Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine

NICHD Brain and Tissue Bank

19 May

Thinking about death is just no fun. Plain and simple. It isn’t fun to plan ahead for a future where you or a loved one is no longer here. Many of us avoid planning for death because it is so hard to think about. But we should face those fears. Depending on your circumstances, you may either be a person being supported, or you may be supporting others. Obviously, some form of financial planning is key, especially within the disability community. Shannon Rosa discussed this topic at The Thinking Person’s Guide to Autism.

But there are other things to think about too. When Eric Courchesne spoke at IMFAR, he started out by noting how there are very, very few sources of postmortem brain tissue. There are really only a few dozen. According to the NICHD (National Center for Child Health and Human Development), here’s what’s in the brain bank:

Autism = 43
Autism-Pending = 10
Autism suspected = 8
Pervasive developmental disorder = 1
Unaffected autism relatives = 3

ASD related:

Rett = 10
Asperger = 4
Angelman = 5
Epilepsy/seizures = 61
Tuberous Sclerosis = 34

That’s it. And this has to serve:

Number of researchers who have received tissue = 72
total autism tissue samples distributed =>1,500
total control tissue samples distributed for autism reearch = >2000
Number of autism papers that utilized NICHD tissue = 82
Number of autism abstracts that utilized NICHD tissue = 103

If you want more information, go to www.btbank.org. There you can register yourself or your minor child as a tissue donor.

OK, it isn’t the way any of us want to contribute to autism science. But just look: there are 43 autism cases available. That’s it. We all know about the diversity of the autism population. 43 is a pitifully small number.

Tissue needs to be collected within 24 hours. Let’s face it, no one wants to have to face the decision of whether to donate a loved one’s tissue in that time of immense grief. Plan ahead. register

Interviews from IMFAR: Alex Plank brings the conference to the public

18 May

One of the unexpected joys of attending the IMFAR conference this year was meeting Alex Plank of Wrong Planet. I plan on writing more about Alex soon, but for the moment, let me bring you some of the interviews he did. His team is the same one that brought us the press conference. That was no small effort. They were up most of the night getting that out so fast. As you will see, Alex takes videography very seriously. As such, I would recommend playing these full screen or going to YouTube and playing them in a larger format that is afforded by out column size. It’s quality work. I love the way he’s working with various locations in these interviews.

John Robison at Imfar

David Mandell at IMFAR 2011

Clara Lajonchere, VP of Clinical Programs at IMFAR

Peter Bell of Autism Speaks – IMFAR Interview in San Diego

Geraldine Dawson Interview

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey

13 May

I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.

For those who have read this blog for some time, it will come as no surprise that I have a keen interest in autism research. In my writing I have often analyzed data from public datasets like the California Department of Developmental Services data. A while back there was a lot of attention placed on the National Survey of Children’s Health. The big news was the announcement of an autism prevalence of about 1%, and a notion that these data pointed to a very high “recovery” rate from autism. I took a look at the recovery rate question. I also looked for a what other information we might gather from the survey, including debunking the idea that 80% of parents of autistic kids divorce.

One of the big news stories from last year’s IMFAR was the announcement that autism does not result in a high divorce rate. The team presenting at IMFAR were much more rigorous in their analysis than the report of raw data that I did. But I have to say that when I read the IMFAR abstract I thought, good to see that team make this fact known. I also thought to myself: I’m asking the right questions of the data I am analyzing.

I also know how to give a presentation at a conference, having done so many times in the past. But conferences don’t let people present using a pseudonym. This was somewhat frustrating, as I have been looking at data from the National Household Education Surveys Program (NHES) and found some very interesting results. Once people took it upon themselves to out me, that was no longer an obstacle, so I submitted an abstract for IMFAR 2011:

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
M. J. Carey
Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.

Objectives:
1. Compare educational placements and perceived educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder. Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

The crude administrative prevalence is quite high at 1 in 65 (1.5%). Notably higher than the 1% value in the last CDC prevalence estimate and the estimate from the NSCH from the same year. As you can see, this is not where I placed the emphasis in this abstract.

What struck me when I looked at these data was the evidence for how broad the spectrum is. Most students are on an IEP. Students with parent-reported autism are in non-graded environments more, and are not getting as high grades. But, there are also a large fraction whose grades are high and there is a small, but notable, group whose parents have expectations of college and beyond.

One major question is how realistic are these parent expectations? How well do these students really do on transition out of school? Another presentation at IMFAR looks into that. This is by Prof. Shattuck’s group at Washington University at St. Louis. To be very clear, I had nothing to do with this study and didn’t even know it was in the works. Prof. Shattuck’s work is far more rigorous than the abstract I submitted, but I’m encouraged to be asking good questions at least. Here is his abstract:

110.096 75 The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD. J. L. Taylor*1 and P. Shattuck2, (1)Vanderbilt Kennedy Center, (2)Washington University

Background: There is considerable variability in post-high school outcomes of young adults with ASD. Underemployment is common, and many young adults continuing living with their parents or in supported settings after leaving high school. Research examining predictors of independence among adults with ASD has focused on characteristics of the adult that are difficult to change, such as early language or IQ. The present study focused on one malleable factor that is related to adult outcomes in typically developing individuals: parental expectations.

Objectives: This study had two objectives: 1) to describe parents’ expectations for the post-high school educational, occupational, and residential outcomes of their son or daughter with ASD; and 2) to determine the correspondence between parental expectations and outcomes.

Methods: This study used data from waves 1 and 4 of the National Longitudinal Transition Study 2 (NLTS2), a nationally representative, 10-year longitudinal survey of adolescents in special education. Participants for this study included 390 parents whose son or daughter had received a diagnosis of ASD through the school system and had exited high school by wave 4.
Parental expectations were assessed at wave 1, while youth were still in high school, with the following questions: “How likely do you think it is that (youth) will:” 1.) “graduate from a 4-year college;” 2.) “eventually will get a paid job;” 3.) “eventually live away from home on (his/her) own without supervision.” The son or daughter’s educational activities, current living arrangement, and work status were measured at wave 4. Severity of impairment (conversational ability, social communication, mental skills) was statistically controlled in all analyses.

Results: One-quarter (27%) of parents expected that their son or daughter would graduate from a 4-year college, 88% expected that their son or daughter would work for pay, and one-half expected that he or she would live outside the home without supports. Family income was not independently related to parents’ expectations that their son or daughter would attain a 4-year degree or live outside of the home without supports. Families with higher incomes were more likely to expect that their son or daughter would work for pay, B=.08, p.10. Parental expectations did, however, predict the likelihood that youth would be working for pay, OR=6.05, p<.01.

Conclusions: For many parents of youth with ASD, expectations for their son or daughter’s post-high school living arrangements and education may not be realized. Expectations for paid employment, however, may increase the likelihood of post-high school employment.

Again, for emphasis: “Only 39% of youth whose parents said they “definitely would” graduate from a 4-year college were currently enrolled or had graduated; 45% of youth whose parents said the “definitely would” live away from home independently were currently doing so”.

The question is: how can we achieve the goal where more autistics make the transition from school to adulthood and employment or college? I don’t expect all to make that transition, but I feel strongly that we can do a lot better as a society than we are now.

note–I originally posted this last month when the Abstracts for IMFAR 2011 were first put online. Unfortunately, they were online by mistake. There was an embargo still in place. I pull the article then and am re posting it now that the embargo is lifted. Friday at 9am, I will be standing in front of the poster.

Video of IMFAR Press Conference (with thank to WrongPlanet)

13 May

Alex Plank is at IMFAR with a video team and they taped the press conference. Mr. Plank runs the Wrong Planet website (where you can see this and many other great videos).

The press conference was just over 1 hour. You can skip around to find parts that may interest you.

Here is a rundown of the press conference, and the slides:

Introduction 1: Dana Marnane of Autism Speaks
Introduction 2: David Amaral of U.C. Davis
Panelist 1: Antonio Hardan of Stanford slides
Panelist 2: Irva Hertz-Picciotto of U.C. Davis (slides)
Panelist 3: David Mandell of U. Penn slides and more slides
Panelist 4: Eric Courchesne of U.C. San Diego. (slides)

Blogging IMFAR

12 May

I’m currently attending IMFAR. I’m taking notes and hope to get posts out quickly. I’d strongly recommend following Shannon Rosa. She’s tweeting and live blogging the conference. She’s on twitter and The Thinking Person’s Guide to Autism.

So what do parents really think causes autism?

12 May

According to the MIND institute, presenting at IMFAR:

The two most common causes of autism cited among all parents was an environmental cause (51%) and/or a genetic cause (51%). Vaccines (22%) were the third most commonly believed etiological factor, followed by 20% of parents who did not know or have a guess as to what may cause autism.

This is an interesting set of results to me. I’m frequently told that the overwhelming majority of parents believe vaccines cause autism. Turns out less than a quarter do.

Also of interest was the following statement:

Vaccines are commonly cited as a cause by parents in all ethnic groups despite a clear lack of scientific evidence demonstrating a relationship between autism and either the measles, mumps, rubella (MMR) vaccine, or thimerosal containing vaccines

Wasn’t that long ago that autism anti-vaxxer supermo Rick Rollens was basically in charge of MIND. How times have changed.

IMFAR 2011: the press conference (part 1)

11 May

The International Meeting for Autism Research starts tomorrow. There are some preliminary sessions ongoing today, including the press conference.

For the press conference, a small group of researchers were singled out and gave advance summaries of their work. David Amaral of U.C. Davis is the president of INSAR (the International Society for Autism Research) and hosted the press conference.

Eric Courchesne, Antonio Hardan, David Mandell, and Irva Hertz-Picciotto gave presentations and answered questions from the panel. Marsha Mailick Seltzer was also listed in the press book and was available, but did not give a presentation.

Amaral gave an introduction. This is the 10th IMFAR, and they returned to San Diego, where the first conference was held. The fist conference had 250 attendees. This one will have about 2,000. He stressed the focus on research into causes and treatment, the wide range of studies including environmental causation, and the strong passion and excitement of the researchers.

Eric Courchesne discussed some very exciting work his team is presenting. The first abstract highlighted was: Abnormally Accelerated Development of Higher-Order Long-Distance Cerebral Tracts In ASD Infants and Toddlers. They are looking ath the neural underpinnings of autism. They studied 39 ASD and 23 non-ASD children, aged 12-40 months through MRI. This is the largest diffusion tensor MRI study in autism so far. They were able to identify children so young due to the recent methodologies put out in Pediatrics.

They found a number of interesting results. They looked at specific bundles of of nerves involved in long-range connectivity within the brain. Connectivity between the temperal lobe and limbic system (e.g. amygdala) are different amongst autistics from very early on. They looked at a measure called “fractional anisotropy”, or FA. For young autistics, FA is high. FA grows with time (it is a measure of maturity), but it grows slower than for non ASD kids. Result–FA is high for young (<30 month old) children, but low for older autistics. This is consistent with earlier work showing lower maturity (FA) for older autistics.

During questions, there was much dicussion of other aspects of Dr. Courchesne's research. There is a 2x increase in brain cells in the frontal cortex in very young autistics. This points to causation, at least for a large group, in very early events. There is also evidence from post mortem studies giving genetic evidence of dysregulation of functions that regularte cell number, cell migration, patternng of the brain, left/right brain symmetry and other factors of the brain. Not only are there differences in genetic expression and genetic pathways, but they are age dependent.

This brings up an important point for future research efforts. Researchers need to be aware that so many factors could be age dependent. Also, this gives some insight into possible developmental trajectories that the brain may undergoe. It was posited that the

The idea that FA starts out higher is new and presents a possible mechanism for different brain development in autistics. It was posited that the early structure of the autistic brain could result in the different developmental path.

On a related topic in the questions, I believe it was from David Amaral, it was noted that "precocious" brain growth is associated with regression. While it is known that large head diameters are common amongst autistics, changes in brain growth are observable as early in 4-6 months of age, well before the regression occurs.

And that's just the first person in the panel! I will get to the rest of the press conference shortly.

When the science fails you, turn to the legal option

10 May

A news conference today will confirm that autism/anti-vaccine groups have lost the scientific battle for the idea that vaccines cause autism as they turn to the legal battle instead.

…a new report in a New York law school journal, the Pace Environmental Law Review, could reignite the often-inflammatory debate over the issue. Based on a sampling of cases in which plaintiffs won settlements or awards in vaccine court, the authors found that many of the victims demonstrated evidence of autism – even though, perhaps as a legal tactic, their lawsuits emphasized other injuries.

Readers of this site might be forgiven for looking and yawning – here we go again. This is nothing but re-hash of already discussed material. But lets look at the main claim of this issue:

Of the 170 cases the report’s authors examined, 32, or 19 percent, provided documented evidence of autism or autism-like symptoms. The evidence in some cases included findings by the court that the children had autism, “autism-like symptoms” or “symptoms and behavior consistent with autism.” In other situations, third-party medical, educational or other court records confirmed an autistic disorder.

The report – at least in this news story – doesn’t seem to mention how many children were compensated for having autism. As we all kow ‘autism like symptoms’ or ‘symptoms and behavior consistent with autism.’ might be just that – but they are not autism. If they were I’m sure the court would’ve reported it.

And thats not all. Nobody seems to be giving an estimate for how many of these kids actual autism (not autism-like symptoms etc) was actually caused by an actual vaccine.

And thats *still* not all. One of the most problematic issues for this new ‘line of attack’ is this.

Daubert. This is the standard of science that should be used in legal cases. When Daubert is applied, the bottom line is that the best science must be applied. In _none_ of these cases was Daubert applied. In fact, in only one instance was Daubert applied – the Autism Omnibus hearings. And as we all know, they failed.

So here we have a fairly desperate roll of the dice. Eschewing science completely, the autism/anti-vaxxers have decided to turn their attention to the law. By muddying the legal waters, they are attempting to make it appear as if autism by any other name has been compensated in at least 19% of the cases they looked at.

The truth is, it hasn’t. The truth is that in no cases I can see has a case been established scientifically to show vaccines cause autism.

Prevalence of Autism Spectrum Disorders in a Total Population Sample

9 May

A long-awaited study of autism prevalence in Korea came out today in the American Journal of Psychiatry. Most of the information we have about autism prevalence comes from the US, the UK and Europe, so many were looking at this as the “Korean Study”. It is that, and very much more.

The title of the study is Prevalence of Autism Spectrum Disorders in a Total Population Sample. I expect the study will be gathering quite a lot of press as the results are quite remarkable. For one thing, the autism prevalence is estimated at 2.64%. That’s right, over double the current estimates in the United States and the U.K.. For another thing, most of the prevalence is for autistic students who were previously unidentified and unsupported.

Unfortunately, I was unable to obtain permission to review the article pre-embargo for discussion here on the Left Brain/Right Brain blog. Instead, I wrote about this for the Autism Science Foundation as Prevalence of Autism Spectrum Disorders in a Total Population Sample. There you will find a more thorough review of the paper, complete with questions and answers with team member Roy Richard Grinker of George Washington University. The study was led by Dr. Young Shin Kim of Yale, and includes an international team:

Young Shin Kim, M.D., Ph.D., Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D. , Eric Fombonne, M.D. Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D. ,Soo-Jeong Kim, M.D., Young-Key Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D., Roy Richard Grinker, Ph.D.

Again, the full post can be found at the Autism Science Foundation blog.

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