Archive by Author

The Geier story on testosterone shifts again

19 Apr

When Mark and David Geier first proposed using Lupron on autistic children, it was supposedly to help remove mercury from the brain. Their theory was that mercury and testosterone bound together in the brain and that this prevented chelators from being able to remove the mercury. They first approached the Rev. Lisa Sykes, whose son was one of their patients, with the idea. You can hear her discuss that encounter here.

The blurb for that video was:

The Reverend Lisa Sykes is the mother of a recovering autistic boy (Wesley) and an ordained minister, currently serving as Pastor for the Christ United Methodist Church in Richmond, Virginia. In this interview, Rev. Sykes discusses how she came to having her son treated using the Geiers’ “lupron” protocol to more effectively remove heavy metals by first lowering Wesley’s abnormally high testosterone levels.

In the video, Rev. Sykes quotes David Geier (Mark Geier’s non-doctor son and partner in his clinic and research) in the video as saying:

“Do you know, we’ve figured something out!”

“We think we can get rid of the mercury by lowering the testosterone”

As the Geiers and the Rev. Sykes have been major proponents of the failed mercury causation idea, this is not surprising.

The science behind the idea was bad. To the point of laughable, if it weren’t for the danger posed to disabled children.

Mr. Geier has since had his license to practice medicine suspended, in large part due his “Lupron protocol” and the way he misdiagnosed children with “precocious puberty” in order to prescribe Lupron.

The Geiers and Rev. Sykes have a new paper out: “An evaluation of the role and treatment of elevated male hormones in autism spectrum disorders.”

The word “mercury” doesn’t appear in the main body of the paper at all. Just in a citation to one of the Geier team early papers. But they do conclude:

Anti-androgen therapy should be considered as an effective means to significantly help improve clinical features of patients diagnosed with an ASD.

The paper was published in Acta Neurobiol Exp, a journal by the Neuroscience Society. The journal has an editor who is a proponent of the idea that vaccines cause autism and has a history of publishing low quality papers promoting the idea.

Frankly, I see this as an attempt by the Geiers to create a defense for their previous actions, those which resulted in Mark Geier’s license suspension. By distancing themselves from both the purported chelation idea and the precocious puberty idea they can create a justification for why they treated disabled children with a drug for which there was no clinically indicated need.

Suspension of Mark Geier is upheld

19 Apr

Mark Geier is a name well known in the autism world of alternative medicine as well as a major source of papers purporting to link autism to mercury. He had a medical practice, was licensed in multple states, presented repeatedly at autism parent alt-med conventions, and served as a witness for the vaccine court.

Mr. Geier’s license to practice medicine was suspended last year. Since then he has tried a few avenues to get his ability to practice reinstated, at least while he is pursuing appeals. The Maryland State Board of Physicians has denied his request and issued a (second) cease and desist order informing him to stop practicing medicine.

Mr. Geier and his son, David Geier, took a theory from Prof. Simon Baron-Cohen: the “extreme male brain” concept of autism. Where Prof. Baron-Cohen focused on the effects of fetal testosterone levels on brain development, the Geier team somehow arrived at the idea that autistics have mercury bound in to testosterone in their brains. One can read an analysis of this theory at A Photon in the Darkness, Miscellaneous Mercury Nonsense. As you can imagine from the title of that article, the autism/mercury/testosterone idea was an obviously bad idea from the start.

Unfortunately, the Geiers took this bad idea from theory to practice. They further hypothesized that these mercury/testosterone sheets prevented chelators from removing the mercury. So, they futher hypothesied, by reducing the amount of testosterone in the body, the mercury bound in these supposed mercury/testosterone sheets would be released allowing chelators to remove the mercury. Why lower levels of testosterone would lead to these supposed mercury/testosterone complexes breaking down is not well explained. Which is another way of saying it doesn’t make sense.

It is worth noting that these sheets, or matrices as the Geiers dubbed them, of mercury and testosterone do exist. In laboratories. After boiling mercury compounds in beakers of benzene. As Prometheus wrote back in 2006:

This is not a condition even remotely similar to anything found in living tissue – of any vertebrate species. In other words, it isn’t likely to happen in autistic children unless you dissolve them in hot benzene.

Basically every link in their logic chain was bad. But this did not stop the Geiers from applying Lupron as a treatment. The drugs for reducing testosterone production (such as Lupron) are expensive. Insurance doesn’t pay for Lupron to reduce testosterone levels in disabled children so that non-existent mercury/testosterone sheets will break down by some unexplained mechanism so that chelators can remove the mercury which is not really linked to autism. Probably because of the insurance angle, the Geier’s prescribed Lupron and similar drugs not for the supposed ability to help the chelating process, but to treat precocious puberty. Early onset of puberty.

According to the Maryland Board, based on records and testimony from patient’s parents, the Geiers failed to do the basic work involved in diagnosing precocious puberty and, in some cases, diagnosed precocious puberty in children who were old enough to be going through puberty.

Sound complicated? They were diagnosing precocious puberty without the proper tests in children who didn’t have it in order to prescribe drugs to reduce testosterone levels so that mercury/testosterone sheets which don’t exist in their brains will break down and allow a chelator to remove the mercury which doesn’t cause autism.

Lupron is not a mild drug. It reduces sex hormones and delays puberty. Children are supposed to go through puberty at a given time in their lives and delaying it comes at a cost. In addition the drug itself has side effects. From the recent decision upholding the suspension of Mr. Geier’s license:

Lupron treatment carries a very high risk of skin abscesses and infections, and it is contraindicated in patients with a history of seizures. Dr. Geier nevertheless prescribed it for Patient B, who had a history or uncontrolled seizures. Nor did Dr. Geier perform all of the necessary diagnostic procedures before prescribing Lupron. Nor did Dr. Geier physically examine Patient B until almost three years after he began prescribing for him. See Proposed Decision at 33, 37-38. This is only one example of the truly risky behavior that Dr. Geier engaged in with these patients.

Mr. Geier’s license to practice medicine was suspended last year by the Maryland Board of Medical Practice. He tried to defend himself in a series of actions since, with this action being the final word.

The Board “entirely agrees” with the a previous decision that allowing Mr. Geier to continue to practice medicine while awaiting the determination of formal charges raises the likelihood of serious harm to public health and safety:

The ALJ concluded that “allowing [Dr. Geier] to continue practicing medicine while formal charges are pending raises a substantial liltelihood of risk of serious harm to the public health, safety, or welfare.” The Board entirely agrees. For Dr. Geier to practice medicine at this time would constitute a danger to the patient community.(3)

The footnote (3) in the above statement was already quoted in this artice–look above to the paragraph on “Lupron treatment carries a very high risk…”

The Board repeated this position in their conclusion:

“I conclude that for all these reasons, the Patients’ health, safety or welfare was at risk of serious harm.. Further, the existence of all these problems throughout all the Records raises a substantial likelihood that the risk of serious harm to the Patients was also posed to many other children with autism treated by the Respondent. I find that this meets the necessary standard for summary suspension of the Respondent’s license: allowing him to continue practicing medicine while formal charges are pending raises a substantial likelihood of risk of serious harm to the public health, safety, or welfare,”

One very troubling argument made by Mr. Geier was that he was not required to have an Institutional Review Board for his research. One of the charges against Mr. Geier involved an IRB he instituted–where he, his son, his wife, a patient’s mother and other interested parties were members of the IRB. The Board did not address whether such a board was required, but did dismiss the charge based on the lack of evidence put forth by the State. More discussion on the IRB can be found at Neurodiversity.com in the article An Elusive Institute.

The Respondent argued both that he was not required by federal law to have an Internal Review Board and, that even if he was bound by such a requirement, the State failed to produce any evidence that his board operated in a flawed manner. The State did not dispute this argument in its response to the Motion. I agree with the Respondent that the State failed to produce sufficient evidence to survive a motion for judgment on the allegations related to an Internal Review Board. See COMAR 28.02.01.12E. C’ Md. Rule 2-519. I will recommend that this portion of the Motion be granted and further recommend that paragraphs 157 through 162 of the Order for Summary Suspension be dismissed.

The thought that somene (Mr. Geier in this case) believes that research could be performed on anyone, not just disabled children, without the protection of an IRB is frightening.

In what is to this reader the most ironic statement by Mr. Geier in this action:

Finally, Dr. Geier accuses the ALJ of establishing a new and unwarranted standard for the medical care of children with autism. Again, Dr. Geier fails to acknowledge that the ALJ relied to some extent on the testimony of his own expert witnesses, and on his own sworn statement, to make her findings regarding the standard of care and the deficiencies in Dr. Geier’s practice.

Yes. Dr. Geier accuses the ALJ of establishing a “new and unwarranted standard for the medical care of children with autism.” Mr. Geier, who while he may not have been the first to promote chelation for autism has been one of the primary proponents, Mr. Geier is part of the team who invented the idea of Lupron as a part of a chelation protocol. A “new and unwarranted standard for medical care of children with autism”.

In addition to this decision, and the cease and desist order, Mr. Geier’s licenses to practice have been suspended in California, New Jersey, Indiana, Florida, Ohio, Washington and Virgina.

The Maryland Board accepted James Adams (a materials scientist) as an expert on chelation, at the behest of Mr. Geier. The opinions offered by Mr. Adams differ from those of medical toxicologists (a group of physicians trained and in practice to treat poisoning):

The Respondent [Geier] testified in his sworn statement that he orders chelation therapy for hispatients on “various” schedules “every other day or a few days on and a few days off for a couple of months – three months.” State’s Ex, 8 at 34. Yet, the Respondent’s expert on chelation, Dr. Adams, testified credibly that patients need an even longer break between rounds of chelation: three days of chelation followed by eleven days off. Dr. Adams also testified that chelation therapy should only be initiated after a patient is given a short “challenge” dose of chelation to ensure that the patient actually needs the therapy. If administered to a patient who does not need it, chelation poses serious risks of injury to the brain and other organs. It is imperative, therefore, that a physician only administer chelation on a limited basis to the patients who actually need it. The Respondent not only skipped the challenge step necessary to ensure chelation was even necessary, but then went full force into chelation therapy on an intensive schedule (with an experimental drug.not FDA-approved for that purpose) without appropriate rest breaks. In several cases, moreover, the Respondent failed to regularly monitor the effects of chelation, and in two cases he prescribed it for patients that he knew he could not monitor.

The concept of a “challenge test” for diagnosing mercury intoxication is covered by the American College of Medical Toxicologists in American College of Medical Toxicology Position Statement on Post-Chelator Challenge Urinary Metal Testing. Who concluded:

“It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

I hope that the Maryland Board looks into this issue of challenge testing before ruling again on such issues.

Mr. Geier is scheduled to give a talk at a large annual autism-parent convention. Last year, after the first action suspending his license, he was reportedly given a standing ovation at this convention. This reader is at a loss to understand why.

Mayo Clinic to study adult prevalence and outcomes

18 Apr

A five year project was started this year to investigate the epidemiology and current status of adults in the U.S.. At present we have almost no data on adult outcomes. We have little data using on adult prevalence. Studies from the U.K. have reported a prevalence about 1.1% for autistic adults “…with learning disabilities living in private households and communal care establishments in Leicestershire, Lambeth and Sheffield”. This is slightly higher than reported in 2007. The studies were survey based. The survey was calibrated with testing of a subset of the population. However, the study did not involve direct testing of all individuals or record review of all individuals.

The U.K. study was an excellent first step to demonstrate, amongst other factors, the number of adult autistics and their living conditions.

There is nothing close to this in the United States. We can’t make real comparisons of prevalence between adults and children, for example. Not just because we don’t really have the data. Multiple studies have shown that when one tests adults, even those living in settings for the developmentally disabled, many autistics were unidentified before the study.

Here is the project description from the NIH Reporter website:

DESCRIPTION (provided by applicant): autism Spectrum Disorders (ASDs) are lifelong neurodevelopmental conditions with mostly unknown etiology that have a huge impact on affected individuals and their families, and are a major public health concern. This proposal, “autism Spectrum Disorder: Birth Cohort 1976-2000, Epidemiology and Adult Status,” in response to NIH Funding Opportunity Announcement (PA-10-158) describes an epidemiologic, population-based, large birth cohort study of ASDs. Significant gaps exist in the knowledge of ASD incidence and its possible rising trend. Detailed characterization (phenotype) of ASD incident cases and ASD subtypes [Autistic Disorder (AD), Asperger’s Syndrome (AS) and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS] is sparse, and potential risk factors (etiologies) are still unknown. Knowledge about adult outcomes of incident ASD cases identified in childhood is almost non-existent. ASD-associated medical costs are high, yet information to improve cost-effective medical management is lacking. A unique set of circumstances, including an already established population-based birth cohort of all children born 1976-2000 to mothers residing in Olmsted County, MN (N=43,934), access to complete, detailed school records for each child in the birth cohort (Independent School District ISD #535 – 41 public, private, home schooled), access to detailed medical records for every child in the birth cohort (Rochester Epidemiology Project-REP; NIH-AR30582), and the Olmsted County Healthcare Expenditure and Utilization Database (OCHEUD) provide the infrastructure to enable the successful completion of this project. This rigorous epidemiologic study involves an experienced multi-disciplinary research team, confirmation of the availability of documented behavioral symptoms of ASD from 1976 forward, with development of a detailed dictionary of descriptive phrases abstracted from medical/school records congruent with DSM-IV-TR criteria (pilot data) and a unique population-based birth cohort. [To help control for changes in special education laws and DSM criteria] this proposal will implement a systematic page by page review of medical and school records of all potential ASD cases regardless of initial school and medical classification and will apply the same uniform research criteria for ASD incident case identification (including DSM-IV-TR criteria), during the 37year study period. We will study the putative rise in incidence of ASD over 37 years, the possible role of certain risk factors on any incidence trend of ASD over time, the “shared risk” hypothesis by estimating the interaction between perinatal risk factors and family history (parents, siblings) of psychiatric disorders, assessing adult ASD current status and outcomes and cost effective medical management analyses. The knowledge achieved through this combined retrospective and prospective epidemiologic approach will substantially advance scientific/clinical knowledge about ASD

The methodology is similar to that of the CDC reports like the recent 1 in 88 study. The researchers will perform a records review. If the studies on children are any indication, many autistics will be identified through the records review.

This is not the same as a whole population study, where all individuals are screened and many tested for autism. Such a study was performed in Korea recently and resulted in a prevalence of 1 in 38, much higher than found elsewhere with non-whole population studies.

This begs the question of when someone will start a full-population study of adult autistics in the U.S. and, more importantly, what we might find from such a study.

Simons Foundation announces RFA for Explorer Awards

17 Apr

The Simons Foundation is a large source of funding for autism research. They have posted a RFA (request for application) for their Explorer Awards RFA

This award program is designed to enhance our existing support of autism research by providing timely resources to enable focused experiments highly relevant to our mission. A deeper understanding of the mechanisms underlying autism spectrum disorders or potential therapeutic approaches will require investigation at multiple levels, including but not limited to studies focused on gene discovery, molecular mechanisms, circuits, anatomy, and cognition and behavior. We will consider proposals at all of these levels.

The maximum budget is $60,000, including indirect costs for one (1) year, non-renewable.

The full RFA is on the Simons website: Explorer Awards RFA

Workshop report: Regression in autism

17 Apr

Simons Foundation has an article on their recent workshop on regression in autism. Here are the first two paragraphs:

A number of studies suggest that a subset of children with autism make significant social and language gains in the first year of life, and then experience a dramatic loss of skills. As infants, these children babble and make eye contact. However, those abilities suddenly disappear. This loss of skills is known as regression.

Some research suggests that these children may be a unique subgroup within the autism spectrum, distinct from those who show more gradual declines. The question of whether there is an abrupt change in only some children with autism has become an important topic for parents, clinicians and researchers.

Simons Foundation is the largest non government source of autism research funding. They are a private foundation. Their website and blog are great resources for those who follow autism research.

It is very tempting to pull a number of quotes from their article, but instead I’d encourage readers to go to the Simons website and read the article, regression in autism.

Autism Science Foundation interview with Celine Saulnier of the Marcus Autism Center

13 Apr

The Autism Science Foundation is hosting an interview with Celine Saulnier of the Marcus Autism Center today at 12 noon Eastern Time. The interview will be on the ASF Facebook page

Seafood Consumption and Blood Mercury Concentrations in Jamaican Children With and Without Autism Spectrum Disorders.

12 Apr

In yet another study on mercury and autism, a team from the University of Texas has investigated blood mercury levels in children with autism spectrum disorders (ASDs). In Seafood Consumption and Blood Mercury Concentrations in Jamaican Children With and Without Autism Spectrum Disorders they report that “After controlling for the child’s frequency of seafood consumption, maternal age, and parental education, we did not find a significant difference (P = 0.61) between blood mercury concentrations and ASDs. ”

“we did not find a significant difference between blood mercury concentrations and ASDs”

Here is the abstract:

Mercury is a toxic metal shown to have harmful effects on human health. Several studies have reported high blood mercury concentrations as a risk factor for autism spectrum disorders (ASDs), while other studies have reported no such association. The goal of this study was to investigate the association between blood mercury concentrations in children and ASDs. Moreover, we investigated the role of seafood consumption in relation to blood mercury concentrations in Jamaican children. Based on data for 65 sex- and age-matched pairs (2-8 years), we used a General Linear Model to test whether there is an association between blood mercury concentrations and ASDs. After controlling for the child’s frequency of seafood consumption, maternal age, and parental education, we did not find a significant difference (P = 0.61) between blood mercury concentrations and ASDs. However, in both cases and control groups, children who ate certain types of seafood (i.e., salt water fish, sardine, or mackerel fish) had significantly higher (all P < 0.05) geometric means blood mercury concentration which were about 3.5 times that of children living in the US or Canada. Our findings also indicate that Jamaican children with parents who both had education up to high school are at a higher risk of exposure to mercury compared to children with at least one parent who had education beyond high school. Based on our findings, we recommend additional education to Jamaican parents regarding potential hazards of elevated blood mercury concentrations, and its association with seafood consumption and type of seafood.

Members of this team have other work on autism in Jamaica. Last year they presented Paternal and Maternal Age Are Jointly Related to Autism Spectrum Disorders In Jamaican Children at IMFAR. which had goals of:

This study’s primary objectives were to investigate whether environmental exposures to mercury, lead, arsenic and cadmium play a role in autism. Additionally, we investigated other potential risk factors for autism, including maternal and paternal age

So we see that the recently released paper is part of the conclusion of that study, which was incomplete at the time of abstract submission for IMFAR. I believe this team is reporting again at IMFAR 2012.

Why bring this up? It’s a relatively small study on a topic that has been well covered in the past: autism risk and mercury exposure. Besides, do even supporters of the autism/mercury hypothesis think that blood levels of mercury are a good indicator to track? The answer is “yes” when blood levels might implicate mercury and “no” when blood levels do not (as is this case).

The mercury/autism hypothesis has a long history, but it is worth noting that there was a great deal of excitement a few years ago when a researcher claimed that by re-analyzing an existing dataset she could show a correlation between blood mercury levels and autism. Porf. DeSoto’s 2007 paper was Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set. The re-analysis was criticized (e.g. Autism Street’s A Tale Of Two Tails and A Photon in the Darkness’ Winter Potpourri). As noted, the re-analysis was also welcomed in some circles, including an article by Age of Autism’s Mark Blaxill: When Smart Scientists Make Stupid Mistakes:

This is an important and unexpected finding. It supports one of the central hypotheses at the heart of the autism-mercury controversy and suggests that the excretion deficit in autistic children might persist longer than anyone had guessed.

The idea that correlations between blood levels in autistics could be “an important…finding” was downplayed a great deal a few years later after Prof. Hertz-Picciotto’s team at the U.C. Davis MIND Institute came out with a study, Blood mercury concentrations in CHARGE Study children with and without autism. The MIND team concluded, “After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD compared with unaffected controls, and resembled those of nationally representative samples”. Key in that conclusion–“after accounting for dietary and other differences in Hg exposures”. This is something that was not done in the dataset that Prof. DeSoto re-analyzed.

Which led to a press release from Mr. Blaxill’s organization, SafeMinds: New California Study on Children’s Blood Mercury Levels Leaves Unanswered Questions About Mercury’s Role in Autism which downplayed any impact of the MIND study while somewhat ironically using DeSoto’s re-analysis for support. In other words, new research on blood-levels of mercury are not so important because we have older, uncontrolled, data which does say blood-levels are important.

More telling of the shift in support for blood mercury concentrations is this 2010 comment from Katie Wright at the Age of Autism:

Measuring random blood levels is a fruitless exercise, like testing ASD kids for grass allergies in the wintertime.

Don’t assume the door was closed on blood levels of mercury. In 2011 a paper was published, Theoretical aspects of autism: Causes—A review, which stated that there was evidence for a “metal metabolism disorder” in autistics and Supporting this relationship are reports documenting that heavy metals are increased in the blood and urine of autistic subjects”. This review was not surprisingly welcomed by groups promoting the idea that vaccines and/or mercury cause autism as well as criticized by many (for example)

So while, yes, these groups do welcome research indicating that blood levels of mercury are important in discussing autism research, they are also quite prepared to downplay using on blood-levels of mercury in studies which don’t support the mercury-causation idea.

Which is why one will not be surprised that research such as this new paper from Jamaica will have little impact on the mercury-causes-autism movement. Well, that and the fact that it is evidence against causation.

For those who claim that mercury testing should be done earlier–that testing autistic children is too late (“like testing ASD kids for grass allergies in the wintertime”) there is another study in process, one that was presented at IMFAR 2011. Prenatal and Neonatal Peripheral Blood Mercury Levels and Autism Spectrum Disorders which I don’t believe has been published yet. The conclusion from that study: “Levels of total mercury in serum collected from mothers during mid-pregnancy and in blood collected from infants at birth were not associated with risk of ASD.”

Mercury levels in pregnant women aren’t correlated to whether their children have autism. Mercury levels in newborns aren’t associated with autism risk. Blood levels in autistics are not correlated with their diagnosis. Add to this the fact that autism risk is not correlated to levels of mercury exposure from vaccines or immunoglobulins (e.g. Prenatal and Infant Exposure to Thimerosal From Vaccines and Immunoglobulins and Risk of Autism). And the fact that autism does not look like mercury intoxication. And that autism prevalence estimates continue to rise even after mercury was removed from vaccines. Why is there still support for this idea?

Autism Science Foundation fundraiser on Philanthroper

12 Apr

The Autism Science Foundation (ASF) is running a fundraiser on Philanthroper. These are short (1 day) fundraisers with small amounts ($1 to $10). Below is the text from the fundraiser.

https://philanthroper.com/deals/autism-science-foundation

“You can make a big difference with money placed in the right scientific hands.”

– Alison Singer, Autism Science Foundation

It’s Autism Awareness Month. We know a lot and a little about it. We know it’s a development disorder affecting about 1:88 people. We know it affects boys four times more than girls. We know it can make simple communication and social interactions impossibly difficult for those who have it.

We don’t know “the cause,” but we strongly suspect a large genetic component since identical twins will usually share a diagnosis.

We do know we need to learn more.

The Autism Science Foundation is a new group of parents and doctors united to fund the freshest, most exciting ideas to track down the causes of autism and develop evidence-based treatments.

And they’re really good at leveraging small grants to young, driven researchers – like doctoral students – to explore promising new ideas.

“That first grant can make a huge difference,” explains President Alison Singer. “That’s the money that’s dried up from the federal government. That’s what makes or breaks someone’s career.”

It’s a smart approach: don’t write the biggest checks, just try to write the most important ones. Fund a researcher just enough to explore an idea and gather preliminary data. Then, with this germinating seed of science, a researcher can apply for a larger grant somewhere else to continue the work.

And sometimes, most of the legwork of this research has been completed in the umbrella of another study – there’s just no way to see it through.

“You’ll have a student working on another grant who says, ‘wow, we should also be looking at this function, or this particular protein,'” explains Singer. “That only takes a little bit of extra money.”

Given the ASF’s focus on young, driven minds, it’s not surprising that they themselves are a hot startup in the world of autism nonprofits. Nor is it surprising that they’ve already funded successful research at Johns Hopkins.

That said, they can only do what they do by raising money.

“We run this foundation on a shoestring,” says Singer. “At the end of the year, and we write those grant checks and the treasury goes down to zero. The money does not do anyone any good sitting in Citibank.”

ASAN’s Ethical, Legal and Social Implications of Autism Research Symposium Goes Live

10 Apr

The Autistic Self Advocacy Network (ASAN) hosted a symposium on the Ethical, Legal and Social Implications of Autism Research recently. They are now making it available online. See the message below:

Dear Friends:

This week, the media reported that over $1 billion has been spent over the course of the last decade on autism research funding. During a time of constant budget cuts and increasing fiscal pressures on government, this is an astonishing sum. What have we purchased for this investment? How successful has the autism research agenda been in making the American dream a reality for Autistic people and our families? Has our society discussed the ethical, legal and social consequences of how autism research findings may be used? We think these questions are worth asking, and with your help, we think it is past time to get more people involved in the discussion.

Last December, the Autistic Self Advocacy Network joined with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics to hold a symposium on the Ethical, Legal and Social Implications (ELSI) of Autism Research. Supported by a grant from the Administration on Developmental Disabilities, the ASAN ELSI Symposium served as the launching point for a robust conversation about changing the way our society approaches autism research. From our partnership with federal research funders to get self-advocates on grant review panels to growing attention to ethical issues on topics like prenatal testing, self-determination in service-provision and more, the need to introduce values into our national autism research dialogue remains stronger than ever.

Over the course of the month of April, we will be releasing captioned videos of December’s ELSI Symposium. The first is already available on our YouTube channel. You can help us get the word out by watching it alone or with your friends and colleagues, sharing it on facebook and twitter, and starting to talk about these things in your own community. The time has come for our voices to be heard.

Nothing About Us, Without Us!
Ari Ne’eman
President
Autistic Self Advocacy Network

Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders

9 Apr

A study from the U.C. Davis MIND Institute was published today in the journal Pediatrics: Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders. The link is to the abstract, but the full paper is available free for download.

The paper is part of the CHARGE Study. (CHARGE: Childhood Autism Risks from Genetics and the Environment). The study looked for increased risk of a child being diagnosed autism if the mother had metabolic conditions during pregnancy. The metabolic conditions studied were diabetes, hypertension and obesity. They found a possibly heightened risk of autism for these pregnancies. I wrote a more in-depth summary which is available at the Autism Science Foundation blog .

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