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Senate HELP Committee to discuss Combating Autism Reauthorization Act September 7

2 Aug

Slated for committee discussion: the Combating Autism Reauthorization Act: Executive Session – S. 958, the Children’s Hospital GME Support Reauthorization Act of 2011, S. 1094, the Combating Autism Reauthorization Act

10am Eastern time, and it looks like the hearing will be live web-cast.

Here is the agenda:

• S. 958, the Children’s Hospital GME Support Reauthorization Act of 2011

• S. 1094, the Combating Autism Reauthorization Act

• Any Nominations Cleared for Action

The Combating Autism Act is set to sunset September 30th.

Congress delays hearing on autism bill

2 Aug

The Santa Monica Dispatch is reporting that committee hearings on the Combating Autism Reauthorization Act have been pushed off to September:

e U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has just announced that it is postponing a meeting on the Combating Autism Reauthorization Act (CARA) until September 7. The meeting had been scheduled for this Wednesday August 3, but Congress is apparently so exhausted by its represensible behavior during the debt ceiling debate that it’s giving itself a five-week recess. With pay.

http://www.santamonicadispatch.com/2011/08/congress-delays-hearing-in-autism-bill/

The Combating Autism Act reinstated the Interagency Autism Coordinating Committee (IACC) which creates a strategic plan for autism research in the US. More importantly, the CAA authorizes congress to appropriate money for autism specific research.

The CAA is set to end (sunset) on September 30. This leaves very little time from committee hearing to any potential vote by the legislature.

Ancestry of pink disease (infantile acrodynia) identified as a risk factor for autism spectrum disorders

30 Jul

One of the arguments for the mercury-causes-autism hypothesis is that there are subgroups more susceptible to harm from mercury exposures. It is argued that pink disease gives an example for such a susceptibility group.

Pink disease was a reaction to a teething powder which contained mercury. About 1 in 500 children exposed to the powder reacted with pink disease. Two points are important to keep in mind. First, the levels of mercury exposure from the powder were far greater than from vaccines. Second, the exposures were not the same for all children. Some parents would use more teething powder at a time. Some might use it for longer times. This makes it impossible to claim a susceptibility group as the children who showed signs of pink disease could very likely be the ones who had higher levels of mercury exposure.

In a paper just released, a team of researchers interviewed people who had a history of pink disease. Since that teething powder has been gone for decades, these individuals are now old enough to be grandparents.

This is, at best, a very strange paper. Consider these questions:

1) why aren’t they reporting a high autism prevalence in the people who had very high mercury exposures and who showed signs of pink disease? If there is a genetic susceptibility, why isn’t it seen in those with the greatest exposures?

2) why isn’t there a report of high autism prevalence in the children, just the grandchildren? My guess is that the response from some will be that the grandchildren received higher doses of mercury in vaccines than did their parents. Which again would beg the question of where is the high rate of autism in those exposed to the teething powders, especially those who developed pink disease.

The conclusions of this paper have some major logical hurdles to overcome, to say the least. And this is even before the methods are addressed. For example, this all hinges on reports by the grandparents. Not on an actual prevalence measure of the decendents.

If is already well established that the rise in mercury exposures from childhood vaccines was not the cause of the rise in autism prevalence estimates. It has always been clear that autism is not similar to mercury poisoning symptoms. The mercury hypothesis has been harmful, both to public health and the autism communities The time for papers which pose intriguing questions on this subject has past. Studies with weak methods and poor logic are irresponsible in today’s world.

Here is the pubmed link:
Ancestry of pink disease (infantile acrodynia) identified as a risk factor for autism spectrum disorders.

Here is the abstract:

Pink disease (infantile acrodynia) was especially prevalent in the first half of the 20th century. Primarily attributed to exposure to mercury (Hg) commonly found in teething powders, the condition was developed by approximately 1 in 500 exposed children. The differential risk factor was identified as an idiosyncratic sensitivity to Hg. Autism spectrum disorders (ASD) have also been postulated to be produced by Hg. Analogous to the pink disease experience, Hg exposure is widespread yet only a fraction of exposed children develop an ASD, suggesting sensitivity to Hg may also be present in children with an ASD. The objective of this study was to test the hypothesis that individuals with a known hypersensitivity to Hg (pink disease survivors) may be more likely to have descendants with an ASD. Five hundred and twenty-two participants who had previously been diagnosed with pink disease completed a survey on the health outcomes of their descendants. The prevalence rates of ASD and a variety of other clinical conditions diagnosed in childhood (attention deficit hyperactivity disorder, epilepsy, Fragile X syndrome, and Down syndrome) were compared to well-established general population prevalence rates. The results showed the prevalence rate of ASD among the grandchildren of pink disease survivors (1 in 22) to be significantly higher than the comparable general population prevalence rate (1 in 160). The results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD.

Lack of association between autism and four heavy metal regulatory genes

30 Jul

One question that has been discussed for some time is the hypothesized role of mercury as a potential cause of autism. The basic idea is that administrative prevalences of autism went up coincident with increases in mercury exposure from vaccines. Plus, it was asserted that autism symptoms are similar to the symptoms of mercury poisoning (they aren’t).

Part of the mercury model held that there could be a genetic susceptibility to mercury in a subset of children.

Researchers at Vanderbilt University have explored the question by testing autistics for genes involved in how the body processes mercury. They did not find any link between the four genes they screened and autism.

Of course one could argue that some other gene or genes are important. One would then need to explain why mercury exposure from vaccines does not increase the risk of autism.

The paper:
Lack of association between autism and four heavy metal regulatory genes.

Here’s the abstract.

Neurotoxicology. 2011 Jul 20. [Epub ahead of print]
Lack of association between autism and four heavy metal regulatory genes.
Owens SE, Summar ML, Ryckman KK, Haines JL, Reiss S, Summar SR, Aschner M.
Source
Department of Pediatric Toxicology, Vanderbilt University School of Medicine, Nashville, TN, USA.
Abstract
Autism is a common neurodevelopmental disorder with genetic and environmental components. Though unproven, genetic susceptibility to high mercury (Hg) body burden has been suggested as an autism risk factor in a subset of children. We hypothesized that exposure to “safe” Hg levels could be implicated in the etiology of autism if genetic susceptibility altered Hg’s metabolism or intracellular compartmentalization. Genetic sequences of four genes implicated in the transport and response to Hg were screened for variation and association with autism. LAT1 and DMT1 function in Hg transport, and Hg exposure induces MTF1 and MT1a. We identified and characterized 74 variants in MT1a, DMT1, LAT1 and MTF1. Polymorphisms identified through screening 48 unrelated individuals from the general and autistic populations were evaluated for differences in allele frequencies using Fisher’s exact test. Three variants with suggestive p-values <0.1 and four variants with significant p-values <0.05 were followed-up with TaqMan genotyping in a larger cohort of 204 patients and 323 control samples. The pedigree disequilibrium test was used to examine linkage and association. Analysis failed to show association with autism for any variant evaluated in both the initial screening set and the expanded cohort, suggesting that variations in the ability of the four genes studied to process and transport Hg may not play a significant role in the etiology of autism.

Percutaneous endoscopic gastrostomy and gastro-oesophageal reflux in neurologically impaired children

29 Jul

A large amount of what goes into a doctor’s decision making process is based on the communication between doctor and patient. How can you tell if someone has heartburn if you don’t understand the ways that person is communicating? Or, to put it more generally, how does the medical system appropriately serve those with difficulty communicating or with sensory issues?

This recent paper, Percutaneous endoscopic gastrostomy and gastro-oesophageal reflux in neurologically impaired children (full paper online), while not specific to autism, shows that with a lot of extra work, one can get valuable diagnostic information.

Here is the abstract:

Abstract

AIM:To investigate the effects of percutaneous endoscopic gastrostomy (PEG) feeding on gastro-oesophageal reflux (GOR) in a group of these children using combined intraluminal pH and multiple intraluminal impedance (pH/MII).

METHODS: Ten neurologically impaired children underwent 12 h combined pH/MII procedures at least 1 d before and at least 12 d after PEG placement.

METHODS: Prior to PEG placement (pre-PEG) a total of 183 GOR episodes were detected, 156 (85.2%) were non-acidic. After PEG placement (post-PEG) a total of 355 episodes were detected, 182 (51.3%) were non-acidic. The total number of distal acid reflux events statistically significantly increased post-PEG placement (pre-PEG total 27, post-PEG total 173, P = 0.028) and the mean distal pH decreased by 1.1 units. The distal reflux index therefore also significantly increased post-PEG [pre-PEG 0.25 (0-2), post-PEG 2.95 (0-40)]. Average proximal pH was lower post-PEG but the within subject difference was not statistically significant (P = 0.058). Median number of non-acid GOR, average reflux height, total acid clearance time and total bolus clearance time were all lower pre-PEG, but not statistically significant.

CONCLUSION: PEG placement increases GOR episodes in neurologically impaired children.

It is a small study. They place feeding tubes in the children and measure acid events (GOR). The feeding tubes increase the number of acid events.

Gastrointestinal disease has been a major topic within the autism communities for some time. While most of the discussion tends to focus upon whether this is highly prevalent and whether this is somehow linked to autism causation, much less time has been focused upon the actual diagnosis and treatment. Doctors will need extra time and effort in order to make the diagnoses and treat individuals where communication is limited.

Mark Geier: under scrutiny in more states

29 Jul

In Home Autism doctor here under scrutiny, The St. Louis Post Dispatch discusses investigations ongoing in Illinois:

A autism doctor who operates clinics in St. Peters and Springfield, Ill., has been suspended in two states for alleged mistreatment of children.

Dr. Mark Geier has been accused of misdiagnosing children with early puberty and treating them with high doses of Lupron, a drug used to suppress the hormone testosterone.

A hearing will be held on August 22nd to consider Dr. Geier’s license in the state of Illinois.

The Post Dispatch notes that Dr. Geier’s hypotheses and methods are far from generally accepted:

Dr. John Constantino, a psychiatry professor and leading autism researcher at Washington University, said Geier “understands the tools of science but has applied them in questionable ways” to justify specific treatments.

“There is currently no scientific evidence to support the clinical use of Lupron to treat autism in anything other than carefully conducted research trials,” Constantino said.

Autism News Beat in Castration doctor’s license now suspended in four states notes:

Dr. Mark Geier, the Maryland physician who chemically castrates disabled children, is still licensed to practice medicine in seven states, down from eleven. Four states have suspended or revoked his privileges since April 27, when his home state took action against him. Washington followed on May 26, then Virginia on June 9. On June 29, Indiana issued an emergency 90-day suspension, citing the Maryland action.

Onset patterns in autism: correspondence between home video and parent report

27 Jul

Regression is a major topic in autism. Children who lose abilities at a very young age. In Onset patterns in autism: correspondence between home video and parent report, Sally Ozonoff, Ph.D. and a team of researchers at the U.C. Davis MIND Institute looked at the developmental trajectories of children, autistic and non autistic. They reviewed home videos of the children to map those trajectories. They monitored social communication as a function of time.

What they found was even more complex than expected. Instead of finding that some children show low levels of social communication from very early in life. A second group has early high levels of social communication, followed by significant decreases over time (regression). But, there was a third group: a group which was more typical in development followed by not regression, but a plateau in progress in social communication.

The numbers of children in the study are small (53 autistic children), making it unlikely to get a precise idea of what fraction of the children follow each trajectory. According to the IMFAR abstract for this study:

Bayesian Information Criteria were used to select the number of trajectories that best fit the data. There was strong support from coded home video for 3 onset trajectories. The first “early onset” trajectory (n = 20) displayed low rates of social-communication behavior at all ages. The second “regression” trajectory (n = 20) displayed high levels of social-communication behavior early in life and significantly declined over time. The third “plateau” trajectory (n = 12) was similar to the typical children early in life but did not progress as expected. There was no support for a mixed (early signs + regression) trajectory.

Here is the abstract for the published paper:

OBJECTIVE:
The onset of autism is usually conceptualized as occurring in one of two patterns, early onset or regressive. This study examined the number and shape of trajectories of symptom onset evident in coded home movies of children with autism and examined their correspondence with parent report of onset.

METHOD:
Four social-communicative behaviors were coded from the home video of children with autism (n = 52) or typical development (n = 23). All home videos from 6 through 24 months of age were coded (3199 segments). Latent class modeling was used to characterize trajectories and determine the optimal number needed to describe the coded home video. These trajectories were then compared with parent reports of onset patterns, as defined by the Autism Diagnostic Interview-Revised.

RESULTS:
A three-trajectory model best fit the data from the participants with autism. One trajectory displayed low levels of social-communication across time. A second trajectory displayed high levels of social-communication early in life, followed by a significant decrease over time. A third trajectory displayed initial levels of behavior that were similar to the typically developing group but little progress in social-communication with age. There was poor correspondence between home video-based trajectories and parent report of onset.

CONCLUSIONS:
More than two onset categories may be needed to describe the ways in which symptoms emerge in children with autism. There is low agreement between parent report and home video, suggesting that methods for improving parent report of early development must be developed.

The last statement in the results is obviously intriguing. “There was poor correspondence between home video-based trajectories and parent report of onset.”

Here is the segment of the IMFAR abstract:

There was poor correspondence between parent report and home video classifications (kappa = .11, p = .30). Only 9 of 20 participants whose home video displayed clear evidence of a major decline in social-communication behavior were reported to have had a regression by parents. Only 8 of 20 participants with evidence of early delays in social-communication on video were reported to demonstrate an early onset pattern by parents. Of the 10 whose parents described a plateau, only 3 had home video consistent with this pattern.

So, none of the three groups were able to correctly recall the trajectory. Not the parents of kids who regressed. Not the parents of kids who plateaued. Not the parents of kids who had early onset autism.

As parents we’d like to see ourselves as the experts of our children. And, frankly, we are. No one else knows them like we do. But that doesn’t make us infallible.

The study was presented at IMFAR and Shannon Rosa wrote about it for The Thinking Person’s Guide to Autism.

Another manufactured controversy

26 Jul

People are mad at Brian Deer. Really mad. His work uncovered a number of facts behind Andrew Wakefield’s research and business interests. These facts, these actions by Mr. Wakefield, led to many of the problems Mr. Wakefield has suffered in recent years. It is understandable that people are mad at Brian Deer. Andrew Wakefield is rather important to the groups who believe that vaccines caused an epidemic of autism. Mr. Wakefield is the researcher who took the parent’s hypothesis and put it into a prestigious medical journal. Mr. Wakefield has good credentials, and demeanor which makes for excellent TV footage. It is difficult to listen to him and think, “here is a man who lied to the world, caused a fear of the MMR vaccine and vaccines in general, and hid not only his faulty research, but other ethical lapses and shortcuts taken along the way”.

Difficult, but not impossible. The U.K.’s General Medical Council decided that contrary to what Mr. Wakefield had to say in his defense, he had misrepresented his work, he had taken many ethical shortcuts. While the GMC wasn’t interested in the vaccine fears promoted by the faulty, even fraudulent research, the GMC did find Mr. Wakefield guilty of ethics violations, research misconduct and dishonesty and had him struck off the U.K.’s medical register.

And, yes, it was the facts that led to the downfall of Mr. Wakefield. But, that doesn’t shield the messenger. In this case, Mr. Deer. Well, he was more than the messenger. He uncovered the facts as well as presented them.

One thing Mr. Wakefield’s supporters are mad about is the fact that Mr. Deer interviewed one parent using a pseudonym. He presented himself as “Brian Lawrence”, not “Brian Deer”. This is not news, having been in the press for at least 7 years. Much more to the point, it isn’t even a controversy, as I’ll show below. But, it is blog fodder. Apparently enough for Dan Olmsted of the Age of Autism to put out 3, count them 3, articles on the subject.

Since AoA have discussed Mr. Wakefield and Mr. Deer on their blog, it is not surprising that people came here looking to see if there would be a response to Mr. Olmsted’s pieces. There was a time when I read the Age of Autism blog, so perhaps, just perhaps, I was aware of the articles. In a comment on my piece, My comment to the IACC, I got the following

Jim Thompson, frequent commenter here, wrote:

Sullivan:

It seems that your interests parallel those on AoA with a major exception. Have you read this?

See “I was visited yesterday, Friday 28th November 2003 by Brian Lawrence…” at http://www.ageofautism.com/201…..dical.html

I used to get a lot of comments like that. Thread-jacking comments pointing me to one blog or another where some heated discussion was supposedly going on. I pulled the comment this time. In this case I felt it justified. The article it was attached to had nothing to do with the subject of the comment. In fact, to be blunt, I found it both ironic and insulting that the comment was attached to that piece.

Yes, my piece asking for research into better medical care for autistics is so like rehashing the “Brian Deer used a pseudonym” argument. If anything, this serves to show the differences between the Age of Autism and Left Brain/Right Brain. Differences which are becoming more pronounced with time. I’m pushing for a better future. They are rehashing their failures of the past.

Believe me, when I first heard that Brian Deer used a pseudonym in order to obtain an interview, I looked into the question. I asked a simple question: can a journalist lie to a source and if so, when?

The answer is, yes, a journalist can lie. As to when: there are two criteria that must be met. First, there must be a pressing need for the public to obtain the information. Second, the information is not expected to be obtainable by straightforward means.

Let’s consider the news investigation into Mr. Wakefield’s research. It is clear that there was a pressing need for the public to know whether the details were being accurately presented. Mr. Wakefield’s research was creating a fear of vaccines in general, and the MMR in specific. The vaccination rates were dropping to dangerously low levels, presenting a public health hazard. An investigation into the research, even if it required suberterfuge, was warranted, as long as the second criterion was met: there must be a valid expectation that the information would be obtainable by straightforward means.

OK, so point one is met. Let’s look at point two. Mr. Olmsted gives us insight into that question himself:

Deer had written a number of critical articles about parents’ claims of vaccine injury, and if he gave his real name, he doubtless feared, Child 2’s mother would not agree to talk to him. Once she checked his blog, she would be more likely to kick him out of the family home than sit still for what turned into a six-hour inquisition.

Mr. Deer is also described by Mr. Olmsted as being considered at the time of the interview as “a journalist notoriously hostile to people who claimed that vaccines had injured their children. ”

Clearly, the second point is met as well: the information was not expected to be obtainable by straightforward means

Mr. Olmsted is, no doubt, quite aware of the ethics of such methods. The Society of Professional Journalists have the following rules (emphasis added):

Journalists should:
— Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.
— Diligently seek out subjects of news stories to give them the opportunity to respond to allegations of wrongdoing.
— Identify sources whenever feasible. The public is entitled to as much information as possible on sources’ reliability.
— Always question sources’ motives before promising anonymity. Clarify conditions attached to any promise made in exchange for information. Keep promises.
— Make certain that headlines, news teases and promotional material, photos, video, audio, graphics, sound bites and quotations do not misrepresent. They should not oversimplify or highlight incidents out of context.
— Never distort the content of news photos or video. Image enhancement for technical clarity is always permissible. Label montages and photo illustrations.
— Avoid misleading re-enactments or staged news events. If re-enactment is necessary to tell a story, label it.
— Avoid undercover or other surreptitious methods of gathering information except when traditional open methods will not yield information vital to the public. Use of such methods should be explained as part of the story
— Never plagiarize.
— Tell the story of the diversity and magnitude of the human experience boldly, even when it is unpopular to do so.
— Examine their own cultural values and avoid imposing those values on others.
— Avoid stereotyping by race, gender, age, religion, ethnicity, geography, sexual orientation, disability, physical appearance or social status.
— Support the open exchange of views, even views they find repugnant.
— Give voice to the voiceless; official and unofficial sources of information can be equally valid.
— Distinguish between advocacy and news reporting. Analysis and commentary should be labeled and not misrepresent fact or context.
— Distinguish news from advertising and shun hybrids that blur the lines between the two.
— Recognize a special obligation to ensure that the public’s business is conducted in the open and that government records are open to inspection.

As an aside: consider the rules above and Mr. Olmsted’s reporting on autism. “Distinguish between advocacy and news reporting”. “Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.” and more…

Back to the question of whether it is permissible to use “surreptitious methods of gathering information” in obtaining a story. Aside from these being the published rules of the Society of Professional Journalists, Mr. Olmsted is likely well aware of the method. Back when he was at UPE, Mr. Olmted’s journalism partner on what may have been his real intro into medical news reporting (a series on Lariam) was a gentleman named Mark Benjamin. Mr. Olmsted included Mr. Benjamin in the dedication of his book, “The Age of Autism”.

I believe that this is the same Mark Benjamin who went on to write a series for Salon.com called “Getting straight with God“, a “four-part investigation into the Christian netherworld of “reparative therapy,” a disputed practice to convert gays and lesbians into heterosexuals. ”

How did Mark Benjamin, a straight man, obtain the information he needed for the story? ” I told Harley I was gay, although I am straight and married. I used a fake name. ”

He flat out admits, he lied:

When I arrived in Levy’s office, I was asked to fill out roughly 15 pages of questions about myself and my family. Mostly the questions centered on how I got along with my folks. In a section about my problems, I wrote “possible homosexuality.” The fact is, I’m straight, I’m married to a woman, and I have a 3-year-old daughter and a son due in October. I wrote on the form that that I was married with a kid. But I lied and said I was also living a secret life, that I harbored homosexual urges.

This is why I’m calling this out as a manufactured controversy. Brian Deer interviewed someone using a pseudonym. He misrepresented himself. It happens in journalism. It not only happens, it is clearly allowed under specific circumstances. As a journalist, a journalist whose colleagues have used the same techniques, Mr. Olmsted should be quite aware of this.

et

Thoughtful House changes name and focus

21 Jul

Thoughtful House. The name is probably indelibly linked to Andrew Wakefield. Under his tenure there as director, Thoughtful House took on a focus of Dr. Wakefield: vaccines, the gut-brain connection and the like.

The focus was strong, as shown by their early conferences. The speaker list for the first conference was described by Mr. Wakefield as:

Our meeting brought together a faculty of nationally and internationally acclaimed speakers who have not only demonstrated their capacity to adapt to the changing landscape of CDDs, but who have also driven the pace of this change though their innovation, their professional integrity, their compassion, and sometimes their own personal tragedy.

The group was heavily weighted towards the vaccine-causation hypothesis.

Mark Blaxill is a proponent of the mercury hypothesis, member of SafeMinds and writer for the Age of Autism blog. Andrew Wakefield has since been demonstrated to have been unethical in his treatment of disabled children, and unethical in his research. Dr. Elizabeth Mumper is one of the leaders of the DAN movement, founder of the Rimland Center for Integrative Medicine. David Kirby is the author of Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, a book promoting the idea that thimerosal in vaccines caused an autism epidemic. Dr. Arthur Krigsman is an American gastroenterologist who took on the Wakefield theory of gut-brain interaction. Doreen Granpeesheh is the head of CARD. Dr. Paul Ashwood is a researcher at the MIND Institute.

Not surprising with Mr. Wakefield as director, the clinical focus was weighted towards gastro-intestinal investigations.

If you are interested in receiving treatment at Thoughtful House, please call us (512-732-8400) or e-mail us (info@thoughtfulhouse.org) to request a patient packet. Our physicians will meet weekly to determine whether the completed packets indicate that a child would be best served by starting treatment with Dr. Arthur Krigsman, a gastroenterologist, or Drs. Jepson or Kartzinel. Parents will then be notified of the physicians’ opinion. Patients who are referred to Dr. Krigsman will have to complete blood and stool testing and an abdominal X-ray. Once the results are received at Thoughtful House, if warranted, an appointment for a phone consultation and an endoscopy will be made. Patients who do not have symptoms of gastrointestinal disease will be referred to either Dr. Kartzinel or Dr. Jepson, as per the parents’ request. While we prefer to see patients in our offices, we understand that this is sometimes not financially or logistically possible and appointments can be made for phone consultations. (A minimum of one visit per year is required.)

The “Wayback Machine” doesn’t seem to link to old versions of the Thoughtful House research projects page. In the past, they had projects ongoing on vaccines (the “monkey studies”, for example), HBOT and horse-riding therapy. Research funded at Thoughtful House by the Ted Lindsay Foundation took on a decidedly vaccine-causation focus:

Research funded by the Ted Lindsay Foundation at Thoughtful House breaks down into three
broad categories:
• What is causing autism; are vaccines or vaccine components to blame?
• What is the mechanism of damage in autism?
• How do we treat this damage and reverse autism?

But, there has been a shift. Thoughtful House is no more. It happened a while ago. OK, it is still there in that a building and many of the same people are there, but the name changed to the Johnson Center for Child Health and Development in honor of “Betty Wold Johnson in recognition of her ongoing generous support of this community and her exceptional commitment to philanthropy”.

And, very importantly, the focus has changed somewhat.

The Mission Statement for the Johnson Center is clear:

The mission of The Johnson Center for Child Health and Development is to advance the understanding of childhood development through clinical care, research, and education.

No mention of gastro-intestinal problems or investigations are mentioned on the FAQ. Gone are the graphs from “fightingautism.org” showing the rise in Special Education autism counts.

Gone too are some of the staff of Thoughtful House:

Andrew Wakefield left Thoughtful House in Feb. 2010. He now appears to be essentially self employed under the name “Strategic Autism Initiative“.

A google search of the Johnson Center website for “wakefield” gives no hits. Maybe I made a mistake somehow. Maybe his name just isn’t there anymore, even as history.

Dr. Arthur Krigsman, a gastroenterologist, left Thoughtful House a little earlier than Mr. Wakefield. He is reportedly currently running private practices in New York and Austin Texas (near Thoughtful House).

Dr. Bryan Jepson joined Thoughtful House about 2005, along with Dr. Krigsman. He also wrote a book on alternative medical treatments for autism, with a forward by Jenny McCarthy. Dr. Jepson is now is director of the Integrative Sports and Wellness Medical Center in Austin. Autism is only mentioned in his bio, but not in the focus of the clinic itself:

Being involved in this clinic will allow him to combine his passion for integrative medicine with his love of sports and fitness. His role at the center will be to supervise the provision of services and to provide higher level pain, injury, and disease management techniques when required.

Dr. Jerry Kartzinel (once the Thoughtful House medical director of paediatric services) is still active in the alt-med side of treating autism, from his home base in Southern California. No mention on his website bio is given to his time at Thoughtful House, from which he resigned in 2007.

The Johnson Center research page now lists four projects. None of which is vaccine-causation focused:

Identification of Biomarkers in Autism Spectrum Disorder (ASD) using Genomic, Proteomic and Metabolomic Profiling: A Case-Control Study

Elemental Diet in the Treatment of Children Diagnosed with Autism Presenting with Gastrointestinal Abnormalities (ongoing)

Bone Mineral Density in Boys Diagnosed with Autism Spectrum Disorder (on-going)

A Retrospective Analysis of Dietary and Nutrient Status of Children with Autism in an Outpatient Setting (ongoing)

The Johnson Center is a much toned down version of its former Thoughful House identity. As I wrote earlier, Generation Rescue also seems to be backing away from its former self. Sure, there are still the rather shrill voices of vaccine-causation, but I have to say that 2011 is a much different year than 2006, when I first came online in the autism communities. Heck, there’s been a shift since 2009. I’m glad to see the Johnson Center make this move. An apology would be nice, but I’m not holding my breath on that one.

‘Wandering’ Diagnosis Gets Green Light

20 Jul

This from the good people at Disability Scoop: ‘Wandering’ Diagnosis Gets Green Light.

Starting this fall, wandering will be added to the list of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions.

The addition comes after a federal committee gave the final go-ahead on a proposal to make wandering a secondary classification that could be applied to individuals with developmental disabilities or other diagnoses.

The concept of a code for doctors to use as a classification for autistics and those with other conditions came to the forefront in the last year. The IACC held meetings on wandering and various autism groups pushed for, and against, adding the code to the ICD-9.