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Autism Risk and low birth weight newborns

19 Oct

A recent article in the journal Pediatrics has gathered a lot of news coverage this week. Prevalence of Autism Spectrum Disorder in Adolescents Born Weighing<2000 Grams

Here is the abstract:

Objective: To estimate the diagnostic prevalence of autism spectrum disorders (ASDs) in a low birth weight (LBW) cohort.

Methods: Participants belonged to a regional birth cohort of infants (N = 1105) born weighing <2000 g between October 1, 1984, and July 3, 1989, and followed up by periodic assessments to 21 years of age. At 16 years (n = 623), adolescents were screened for ASD using a wide net (previous professional diagnosis of an ASD or a score above a liberal cutoff on the Social Communication Questionnaire or the Autism Spectrum Symptoms Questionnaire). At 21 years (n = 189), 60% of screen positives and 24% of screen negatives were assessed for diagnoses of ASD by the Autism Diagnostic Observation Schedule or the Autism Diagnostic Interview–Revised.

Results: Samples retained at ages 16 and 21 years were representative of samples assessed at earlier ages except for lower levels of social risk. Of positive screens, 11 of 70 had ASD; of negative screens, 3 of 119 had ASD. The fractions of the 2 screening groups with ASD (14.3% in screen-positives and 2.5% in screen negatives) were weighted by fractions of screen-positives and screen-negatives among the adolescents (18.8% and 81.2%, respectively). This calculation produced an estimated prevalence rate of ASD in the entire cohort of 5% (31 of 623).

Conclusions: The diagnostic prevalence of ASD in this LBW preterm cohort was higher than that reported by the Centers for Disease Control and Prevention for 8-year-olds in the general US population in 2006.

The idea that low birth wieght might increase risk of autism isn’t new, but this is a different design: following a low birthweight cohort into adulthood.

The paper, and definitely the media coverage, has some limitiations. A great discussion of this paper and the media coverage can be found at The Biology Files in an article by Emily Willingham: Autism and low birthweight: study–and quote–limitations It’s written much better than I could do, an whatever I’d write at this point would just be a distillation of it.

This is different from the risk of autism due to premature birth, something the media mixed up on occasion and that Emily Willingham discusses in her article.

There are certainly some concerns about how the 5% figure was derived, and one can’t really make a direct comparison between a closely watched cohort at adulthood to the prevalence of 8 year olds based on record review (as in the CDC prevalence estimates). However, the idea that low birth weight is a risk factor is worth investigation.

ASF Founding Board Member Dr. Paul Offit Elected to the Institute of Medicine

19 Oct

Dr. Paul Offit, founding board member of the Autism Science Foundation, has been elected to the Institute of Medicine.

From the Autism Science Foundation Blog:

Autism Science Foundation Founding Board Member Dr. Paul Offit has been elected to the Institute of Medicine (IOM) at the Academy of Natural Sciences. For three decades, Dr. Offit has been a leading researcher in the fields of virology and immunology, and a well-respected and outspoken voice on the science, safety and value of childhood vaccinations. He is also one of the most public faces of the scientific consensus that vaccines have no association with autism.

The IOM is part of the National Academies:

The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public.

Established in 1970, the IOM is the health arm of the National Academy of Sciences, which was chartered under President Abraham Lincoln in 1863. Nearly 150 years later, the National Academy of Sciences has expanded into what is collectively known as the National Academies, which comprises the National Academy of Sciences, the National Academy of Engineering, the National Research Council, and the IOM.

Also elected this year is autism researcher Dr. Daniel Geshwind:

Daniel H. Geschwind, M.D., Ph.D., Gordon and Virginia MacDonald Distinguished Professor, departments of neurology, psychiatry, and human genetics, and director, program in neurogenetics and Center for Autism Research and Treatment, Semel Institute, David Geffen School of Medicine, University of California, Los Angeles

The Wakefield Rehabilitation? Not really.

18 Oct

Reading about Andrew Wakefield gets old and tiring. I’m sure that isn’t news to readers here. Writing about Andew Wakefield gets very tiring. Who wants to keep reminding him/her self about a man who has caused so much harm to both the autism communities and public health in general? Who wants to read about dishonesty and unethical behavior?

I can only imagine that Brian Deer must want to put his award on a shelf and move on.

Which all begs the question: why do I think people reading Left Brain/Right Brain might want to read about him again? Because in this case it isn’t about Mr. Wakefield. Rather it is about his supporters. People who put aside the proved charges of dishonesty and unethical behavior. People such as Kent Heckenlively of the Age of Autism blog who are looking for The Wakefield Rehabilitation. It’s about how and why authors cite previous literature, and not reading too much into citations.

Beyond the hopes of those supporting Andrew Wakefield, there is some good research here and a bit of information about how and why people cite certain papers in the scientific literature.

First, how is Mr. Wakefield being “rehabilitated”? Answer: his papers were recently cited in a recent study. Seriously, something that small. That’s how hard people have to look for validation for Mr. Wakefield. A few citations and he’s on the road to rehabilitation.

The new paper isn’t by just any team, though. The study, recently out in PLoS One is Impaired Carbohydrate Digestion and Transport and Mucosal Dysbiosis in the Intestines of Children with Autism and Gastrointestinal Disturbances. The study is a follow-on to the PLoS One paper by Hornig et al., Lack of association between measles virus vaccine and autism with enteropathy: a case-control study.

Why is that important? “Lack of association…” is the paper which definitively put an end to the Wakefield MMR hypothesis. The team tried, with meticulous attention to detail, to replicate the most important factors of various Wakefield MMR-autism papers. They studied children with autism and gastro-intestinal complaints. They restricted their study to children who had demonstrated clear need for endoscopy (one major difference from the Wakefield studies). They were very careful about correctly reporting the patient histories (another major difference). They tested intestinal biopsy samples for measles virus (similar to as study by the Wakefield team), but were very careful to avoid contamination (unlike the Wakefield studies). The recent study used multiple laboratories to test for measles virus (Wakefield used two: his own and the O’Leary laboratory). Unlike Mr. Wakefield, the recent study reported on results from all the laboratories (Mr. Wakefield neglected to mention the results from his own laboratory which were contradictory to his theory).

Hornig et al. wrote:

The work reported here eliminates the remaining support for the hypothesis that ASD with GI complaints is related to MMR exposure. We found no relationship between the timing of MMR and the onset of either GI complaints or autism. We also could not confirm previous work linking the presence of MV RNA in GI tract to ASD with GI complaints.

About as clear a conclusion as I’ve ever seen. “The work reported here eliminates the remaining support for the hypothesis that ASD with GI complaints is related to MMR exposure.”

So, what about the new paper and the citations? Well, members of the team that produced the Hornig et al. study did further research on the tissue samples taken. Brent L. Williams heads up the author list on the new study.

Here is the (highly technical) abstract from the new study by Williams et al.:

Gastrointestinal disturbances are commonly reported in children with autism, complicate clinical management, and may contribute to behavioral impairment. Reports of deficiencies in disaccharidase enzymatic activity and of beneficial responses to probiotic and dietary therapies led us to survey gene expression and the mucoepithelial microbiota in intestinal biopsies from children with autism and gastrointestinal disease and children with gastrointestinal disease alone. Ileal transcripts encoding disaccharidases and hexose transporters were deficient in children with autism, indicating impairment of the primary pathway for carbohydrate digestion and transport in enterocytes. Deficient expression of these enzymes and transporters was associated with expression of the intestinal transcription factor, CDX2. Metagenomic analysis of intestinal bacteria revealed compositional dysbiosis manifest as decreases in Bacteroidetes, increases in the ratio of Firmicutes to Bacteroidetes, and increases in Betaproteobacteria. Expression levels of disaccharidases and transporters were associated with the abundance of affected bacterial phylotypes. These results indicate a relationship between human intestinal gene expression and bacterial community structure and may provide insights into the pathophysiology of gastrointestinal disturbances in children with autism.

If this were really about the autistics and not about Andrew Wakefield, those claiming that there is something different about the GI disturbances in autistics should be extatic. Here is a top notch team pointing to a possible real difference. In the kids tested, the genes were expressing enzymes and transporters–i.e. the genes are performing differently–for autistic kids. Also, they are seeing differences in the bacteria in the autistic kids.

Not only that, but these kids benefited from dietary intervention, although it isn’t specific to the autistic kids: “Beneficial effects of dietary intervention on GI disturbances were reported for all AUT-GI and Control-GI subjects with FA.”

But, it apparently isn’t about the autistics or the research when it comes to the Age of Autism. It’s about rehabilitating Andrew Wakefield’s reputation. (With apologies in advance–the image that comes to mind is a team that has been performing CPR on his reputation for years now. It’s time to move on.)

The important piece of this study, according to Mr. Heckenlively, is that they cite some of Andrew Wakefield’s papers. In particular:

Wakefield AJ, Anthony A, Murch SH, Thomson M, Montgomery SM, et al. (2000) Enterocolitis in children with developmental disorders. Am J Gastroenterol 95: 2285–2295.

Wakefield AJ, Ashwood P, Limb K, Anthony A (2005) The significance of ileo-colonic lymphoid nodular hyperplasia in children with autistic spectrum disorder. Eur J Gastroenterol Hepatol 17: 827–836

Ashwood P, Anthony A, Torrente F, Wakefield AJ (2004) Spontaneous mucosal lymphocyte cytokine profiles in children with autism and gastrointestinal symptoms: mucosal immune activation and reduced counter regulatory interleukin-10. J Clin Immunol 24: 664–673.

Mr. Heckenlively appears to have built a nice straw man argument in which every thing Mr. Wakefield has done is now discredited. Somehow citing a paper by Mr. Wakefield then becomes some sort of a statement that everything he did was actually right. Both sides of that argument are false. The authors should cite what is in the literature. By citing, say, the Ashwood (2004) paper, they aren’t saying that, say, the 1998 Wakefield Lancet paper is now “rehabilitated’.

Notice that the authors didn’t cite the 1998 Lancet paper. One big reason: it’s been retracted. Which begs the question, why are the authors citing Wakefield et al. (2000)? The paper in the American Journal of Gastroenterology has also been been retracted:

On 28 January 2010, the UK General Medical Council’s Fitness to Practice Panel raised concerns about a paper published in the Lancet by Dr Wakefi eld et al. (1). The main issues were that the patient sample collected was likely to be biased and that the statement in the paper, that the study had local ethics committee approval, was false. Th ere was also the possibility of a serious conflict of interest in the interpretation of the data. Th e Lancet has now retracted this paper (1). Th is paper in the American Journal of Gastroenterology (AJG) (2) also includes the 12 patients in the original Lancet article and therefore we retract this AJG paper from the public record.

One really shouldn’t cite things that have been retracted from the public record. So, is there some message that Williams et al. are trying to send us? Are they saying that Andrew Wakefield was correct all along? Hardly. That paper was retracted in May of 2011, the same time that Impaired Carbohydrate Digestion and Transport and Mucosal Dysbiosis in the Intestines of Children with Autism and Gastrointestinal Disturbances was submitted to PLoS One. The authors weren’t aware of the retraction. Says a lot about how closely they follow Andrew Wakefield, don’t it?

Apparently, the authors have contacted PLoS about the citation, and it will be corrected to notify readers of the retraction. That is the right thing to do. It isn’t a statement about Mr. Wakefield’s research, other than this paper was retracted.

Authors can’t control the message bloggers may try to create from their research (heck, one of the authors, Ian Lipkin, consulted on the recent movie “Contagion”, a main character is a blogger whose message is unscientific and irresponsible). From what I’ve heard, the authors are still very clear on the message of their first PLoS paper: “The work reported here eliminates the remaining support for the hypothesis that ASD with GI complaints is related to MMR exposure. ”

I think the point was made pretty clearly. Mr. Heckenlively in his excitement read way too much into this new paper. Not surprisingly, he just goes on and on making more mistakes. Consider this paragraph:

Isn’t Dr. Wakefield supposed to be some super-villain, leading all of us gullible parents to believe that vaccines aren’t quite as safe as sugar water? Didn’t he make up fake diseases? So, after being stripped of his license to practice medicine in the U. K., it turns out there really is something called autistic entercolitis and ileo-colonic lymphoid nodular hyperplasia in children with autism. At least Dr. W. Ian Lipkin seems to think so.

Wow. All this is extrapolated from a single sentence in the introduction of the paper: “Macroscopic and histological observations in ASD include findings of ileo-colonic lymphoid nodular hyperplasia, enterocolitis, gastritis, and esophagitis [2], [3], [4], [5], [6], [7].”

What does that sentence mean? Simple interpretation: others have reported these findings. Not “we confirm that these findings are real”. Given that reference [3] (a retracted Wakefield paper) may be removed or noted to be retracted, the only support for “enterocolitis” will be gone from the paper.

Mr. Heckenlively wrote “Although this study used a relatively small sample of gut biopsies from children with autism (Hey, isn’t that what Wakefield got in trouble for? Or is my memory failing me?),”

Mr. Heckenlively, your memory is failing you. The findings of the General Medical Council are easily found online.

Let me remind you of some of that document:

The Panel concluded that Dr Wakefield’s shortcomings and the aggravating factors in this case including in broad terms the wide-ranging transgressions relating to every aspect of his research; his disregard for the clinical interests of vulnerable patients; his failure to heed the warnings he received in relation to the potential conflicts of interest associated with his Legal Aid Board funding; his failure to disclose the patent; his dishonesty and the compounding of that dishonesty in relation to the drafting of the Lancet paper; and his subsequent representations about it, all played out against a background of research involving such major public health implications, could not be addressed by any conditions on his registration. In addition, the Panel considered that his actions relating to the taking of blood at the party exemplifies a fundamental failure in the ethical standards expected of a medical practitioner. It concluded that conditional registration would not mark the seriousness of such fundamental failings in his duty as a doctor

and

The Panel made findings of transgressions in many aspects of Dr Wakefield’s research. It made findings of dishonesty in regard to his writing of a scientific paper that had major implications for public health, and with regard to his subsequent representations to a scientific body and to colleagues. He was dishonest in respect of the LAB funds secured for research as well as being misleading. Furthermore he was in breach of his duty to manage finances as well as to account for funds that he did not need to the donor of those funds. In causing blood samples to be taken from children at a birthday party, he callously disregarded the pain and distress young children might suffer and behaved in a way which brought the profession into disrepute.

Mr. Heckelively also poses the question: “Didn’t he [Andrew Wakefield] make up fake diseases?”

That would be “autistic enterocolitis”, a term Andrew Wakefield coined and a condition which still, 13 years later, doesn’t have support. Autistic enterocolitis is not just any and all GI disturbances in autistics. Enterocolitis is “…an inflammation of the colon and small intestine”. Note the “and”, there. Even more important, the PLoSOne paper is not about inflammation at all.

Mr. Heckenlively finishes with the rather hopeful, wishful thinking statement: “But if a big shot scientist like Dr. W. Ian Lipkin is quoting Dr. Andrew Wakefield as a reliable source, maybe the rest of the world will soon be doing the same thing.”

Again, wow. Here we have Ian Lipkin, one of the team that just put an end to the Wakefield-MMR hypothesis. Again, let’s remind ourselves, Ian Lipkin is part of the team which wrote: “The work reported here eliminates the remaining support for the hypothesis that ASD with GI complaints is related to MMR exposure.” There is such a major disconnect between that statement (which, yes, Dr. Lipkin stands by) and what Mr. Heckenlively wrote that I am just left in amazement.

This isn’t a story about rehabilitation. This is a story about diversion. Diversion of attention away from important subjects in autism. These include the medical treatment of major health problems. How does one treat something like bowel problems in individuals with communication and/or sensory difficulties? That’s a big question that gets lost in this whole “Andrew Wakefield” discussion. Research like this new paper is important in that respect: is there something specific to kids with autism, regression and GI disease? Leave aside any discussion about GI being linked to the regression, how do you treat it? I, for one, am glad to see something come out of this research project than just the “MMR doesn’t cause autism and GI disease” conclusion. Instead of trying to read the tea leaves of this paper and try to recoup the damage Andrew Wakefield did to his reputation, why don’t we just read the paper in the context of what this might tell us about the health problems of autistics?

Landlord finds mentally disabled people locked in basement; 3 arrested

18 Oct

This from CNN: Landlord finds mentally disabled people locked in basement; 3 arrested

This is one of those stories where I have to take some time before writing any more.
Here is video from a CNN affiliate:

http://cdn.abclocal.go.com/static/flash/embeddedPlayer/swf/otvEmLoader.swf?version=&station=wpvi&section=&mediaId=8395245&cdnRoot=http://cdn.abclocal.go.com&webRoot=http://abclocal.go.com&configPath=/util/&site=

TACONY – October 17, 2011 (WPVI) — Philadelphia police say alleged kidnapping ringleader Linda Ann Weston had at least 50 social security numbers in her possession when she was arrested this weekend.

They say Weston could have been holding the four adults for a decade or more.

EmpowHER autism blogger…still failing

14 Oct

I recently wrote about a series of rather unfactual articles on EmpowHER, EmpowHer blogs the autism vaccine story…and fails. I checked back on her discussion. Here’s part of her latest comment:

Actually, most of the transmission of whooping cough to newborns is from their vaccinated parents and siblings. The vaccine has been found to only last 3 years so because people are vaccinated repeatedly through childhood and teens, it wears off at a time they are childbearing. In the past, the majority of people had whooping cough as children so they developed life-long immunity to it so could not infect their own children and in the past, most mother’s who had had whooping cough, also breast fed which meant their babies were protected from whooping cough during the vulnerable newborn phase.

Let’s take a look at this, shall we?

Does a pertussis infection give a person “lifelong” immunity? No. Does a vaccine give only 3 years of immunity? No. A journal article (first one on my search for “immunity from pertussis”) states otherwise:

Duration of immunity against pertussis after natural infection or vaccination.
Wendelboe AM, Van Rie A, Salmaso S, Englund JA.
Source

Department of Epidemiology, University of North Carolina-Chapel Hill, Chapel Hill, NC 27599, USA. awendelboe@unc.edu
Abstract

Despite decades of high vaccination coverage, pertussis has remained endemic and reemerged as a public health problem in many countries in the past 2 decades. Waning of vaccine-induced immunity has been cited as one of the reasons for the observed epidemiologic trend. A review of the published data on duration of immunity reveals estimates that infection-acquired immunity against pertussis disease wanes after 4-20 years and protective immunity after vaccination wanes after 4-12 years. Further research into the rate of waning of vaccine-acquired immunity will help determine the optimal timing and frequency of booster immunizations and their role in pertussis control.

So, if we subject people to an infection rather than a vaccination, they might get roughly double the immunity time. Infection comes at the cost of weeks or months of painful coughing, potential permanent harm or death.

The first website in my simple and quick search was the New York state health department.

Neither vaccination nor natural infection with pertussis guarantees lifelong protective immunity against pertussis. Since immunity decreases after five to ten years from the last pertussis vaccine dose, older children, adolescents and adults are at risk of becoming infected with pertussis and need vaccination.

What about “in the past, most mother’s who had had whooping cough, also breast fed which meant their babies were protected from whooping cough during the vulnerable newborn phase.”

Well, yes and no. Protected, yes. As well as being vaccinated? No. Completely protected? No. Whooping cough resulted in a death rate of 4.5/1000 infants in the U.S. in 1900, a year when I expect breast feeding was near 100%.

EmpowHER claims that:

EmpowHER.com provides credible, evidence-based health content from over 400 world-class health care professionals, experts and providers.

Perhaps they could hire writers who would spend 30 seconds doing a simple web search to back up their unfounded claims. Not much to ask from “world class” “experts”.

Seriously, who allowed this comment to go through “Also, the vaccines don’t technically immunize, they change the presentation of the disease.”

Seriously wrong. EmpowHER can, and should, do much better.

Defending alternative medicine and autism: the charges against Anju Usman

14 Oct

In Illinois charges DAN doctor with unethical behavior, LBRB writer Ken Reibel discussed the case recently brought against alternative medical practitioner Dr. Anju Usman. These charges follow on a civil suit brought by the parent of an autistic child seen by Dr. Usman. This charges in this case will require that Dr. Usman defend many of the common practices in alternative medicine.

The complaint is:

DEPARTMENT OF FINANCIAL AND PROFESSIONAL REGULATION of the State of Illinois,

v.

ANJUM I. USMAN, M.D.

No. 200904994

One short paragraph in the complaint sums up a big piece of where this suit has the possibility to strongly influence how alternative medicine “treats” autism: None of the treatments described above has been proven to influence the course of autism.

Here is a section of count 1:

17. Hair analysis does not provide a basis for the diagnosis of heavy metal toxicity.
18. Provoked urine testing does not provide a basis for the diagnosis of heavy metal toxicity. The American College of Medical Toxicology has determined that provoked testing has not be scientifically validated, has no demonstrated benefit and may be harmful when used for assessing patients for metal poisoning.
19. Porphyrin testing does not provide a reliable basis for the diagnosis of heavy metal toxicity.
20. Although chelation therapy is FDA-approved for treating lead poisoning, it should not be used unless a non-provoked blood (not urine) test shows an extremely high level of lead.
21. Respondent did not obtain a confirmatory blood lead test or record any source of lead exposure.
22. The record contains no basis for concluding that chelation therapy was appropriate.
23. The record does not contain adequate infonlled consent for any of the prescribed nonstandard tests or treatments. The consent fonns used did not accurately present the risks and/or benefits of tests and treatments. Although it mentioned experimental drug use, these were not administered as part of a proper experimental protocol.
24. The informed consent form states that chelation therapy “is considered controversial for the generalized treatment of chronic low or high level lead toxicity, mercury toxicity, or for other heavy metal toxicities, either acute or chronic.” This statement is misleading because there is a clear scientific consensus that it is inappropriate for treating lead toxicity without demonstrating that toxicity exists and that the level is very high.
25. Throughout the treatment period, Respondent made statements to AC’s mother that the prescribed treatments had positive clinical benefits for children with autism, despite the lack of empirical research supporting Respondent’s position.
26. The record does not document any reason why AC should have received unproven treatments.
27. Spironolactone, which is potentially dangerous, was prescribed without justification.
28. Despite a nonnal selenium level, Respondent repeatedly and unnecessarily prescribed selenium supplements and continued to do so even when AC eventually showed a high level.
29. That Respondent abused the physician/patient relationship by taking unfair advantage of a patient’s vulnerability in that Respondent utilized unproven drugs and medicine to treat AC, a pediatric patient diagnosed with autism.
30. That the foregoing acts and/or omissions of Respondent are grounds for revocation or suspension of a Certificate of Registration pursuant to 225 Illinois Compiled Statutes (2002), Section 60122(A)(20), relying on the Rules for the Administration of the Medical Practice Act, Illinois Administrative Code Title 68, Section 1285.240(b)(1 )(C), and (2) (C).

There are many methods by which “heavy metal toxicity” is diagnosed by alternative medical practitioners. These methods are not demonstrated to be accurate, and are not accepted by actual medical toxicologists. These include hair analysis, provoked urine testing and porphyrin testing.

A prime example is provoked urine testing. A thorough discussion can be found here. A provoked urine test involves giving an individual a chelator and then testing the urine for heavy metals. Everyone (every thing, every animal) has some level of mercury. A chelator will force the body to excrete some level of the heavy metals inside, so it is no surprise that the levels obtained are “elevated”. The problem is that there is no standard by which one can compare the provoked urine to determine if the person actually has heavy metal poisoning.

The method is also called “challenge” testing. The American College of Medical Toxicologists have a position statement on this:

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.

More quotes from the complaint:

From Count III

That Respondent made false or misleading statements regarding the efficacy or value of the medicine, treatment, or remedy prescribed by Respondent in the treatment of any disease or other condition of the body in that Respondent made false or misleading statements regarding the efficacy of chelation therapy in the treatment of autism.

From Count V

29. That Respondent engaged in a pattern of practice or other behavior that demonstrates incapacity or incompetence to practice in that Respondent:
a. Repeatedly prescribed and administered unproven and medically unnecessary treatments to AC despite the lack of empirical research demonstrating the effectiveness of the prescribed treatment plans; and
b. Demonstrated extreme departure from rational medical judgment in the care and treatment of AC.

This isn’t a criminal complaint. Rather it is an ethics or “professional regulation” complaint. The disciplinary action called for if the case is proven involves Dr. Usman’s license:

WHEREFORE, based on these allegations, the Department of Financial and Professional Regulation of the State of Illinois, by Laura E. Forester, its Chief of Medical Prosecutions, prays that the Physician and Surgeon license of ANJUM I. USMAN, M.D., be revoked, suspended, placed on probation or otherwise disciplined.

EmpowHer blogs the autism vaccine story…and fails

12 Oct

Empowher is a blogging network that bills itself as “Improving Health. Changing Lives”. EmpowHER.com “facts” include this statement:

EmpowHER.com provides credible, evidence-based health content from over 400 world-class health care professionals, experts and providers.

Unfortunately, their recent autism coverage has not been credible nor evidence-based. It is not “improving health”. I am referring to a number of articles by Joanna Karpasea-Jones. Here is a list of some recent articles. Even from the titles you can probably guess the slant these stories have taken:

An Introduction to Autism and its Prevalence
Autism’s Theoretical Causes: Diet and Dietary Deficiency: An Editorial
Autism’s Theoretical Causes: Mercury Amalgam Fillings and Anti-D Injections: An Editorial
Autism’s Theoretical Causes: Diet and Dietary Deficiency: An Editorial
Autism’s Theoretical Causes: Genetics and Metabolism–An Editorial
Autism’s Theoretical Causes, Ultrasound Scans: An Editorial

A short example of the problems that plague Ms. Jones’ analysis can be found on her website, Vaccine Awareness Network, where the top article listed on the main page is “Neurotoxic effects of postnatal thimerosal are mouse strain dependent.”

This was a study by Maddy Hornig, Ian Lipkin and D. Chian from 2004. It was dubbed the “rain mouse” study at the time and was touted as an demonstration that thimerosal might cause autism. A few years later, researchers at the MIND Institute tried to replicate the study. They tried hard. They used 10 times as much thimerosal as Prof. Hornig’s group. They couldn’t recreate the results. They concluded, “Considered together the present results do not indicate pervasive developmental neurotoxicity following vaccine-level thimerosal injections in SJL mice, and provide little if any support for the hypothesis that thimerosal exposure contributes to the etiology of neurodevelopmental disorders. ”

In other words, “Neurotoxic effects of postnatal thimerosal are mouse strain dependent” is a study which has been superseded by a more recent study.

When people give you the Hornig study and don’t mention the MIND Institute study, it’s time to be suspicious.

The articles by Joanna Karpasea-Jones are full of examples like this. Old studies which support her idea are presented. Other studies, old and new, which clearly don’t support the idea of vaccine causation are just not mentioned.

There is another recent article on EmpowHer by Dr. Daemon Jones “Vaccinations: Do They Support or Harm the Health of Our Children?” Dr. Jones is a naturopath, so you likely won’t be surprised that her article is very non-specific and presents statements like “This debate will continue in the medical community until there is more concrete data for one side than the other.”

I have news for Dr. Jones: this isn’t a debate in the medical community. This is a debate amongst bloggers like those on EmpowHER who don’t keep up with current research.

On EmpowHer you can vote for each article. You are given three choices: this article (1) Improved my health (2) changed my life and (3) saved my life. You can’t vote, say, “this article is tired old ideas which were discarded years ago” or, “Doesn’t anyone at EmpowHER check the facts of the articles?”

Sonic the Hedgehog and Autism

11 Oct

A lot of abstracts come out each day in autism research. Some are controversial. A few make big advances. Many make small advances. One can never tell what one will learn by following the flow of abstracts.

For example. Did you know there is a “Sonic Hedgehog” protein? (Sonic the Hedgehog being a character from video games). A researcher in Saudi Arabia proposes that it might be involved in autism etiology:

Relationship Between Sonic Hedgehog Protein, Brain-Derived Neurotrophic Factor and Oxidative Stress in Autism Spectrum Disorders.

This probably isn’t one of the “big advances” papers. But, something new, at least to me.

Who should lead the autism rights movement?

8 Oct

An article up on the Washington Times Communities poses the question: Who should lead the autism rights movement? The article cites an amazing discussion that has been going on at The Thinking Person’s Guide to Autism.

If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

Frankly, I think a leader/follower idea isn’t right anyway. Part of this is my own personal bias. I am always suspicious of people who want to lead. Especially people who are absolutely sure of their positions and never waiver from them. That’s just a recipe for disaster. I shy away from people who don’t understand that just because someone doesn’t want to lead, that doesn’t mean that he/she wants to follow. I run from people who are too enamored with leadership and power.

One comment out of the TPGTA series that has resonated with a number of people came from one of Zoe’s posts: “It goes like this: ‘Some parents just want disabled children to speak and disabled adults to shut up.'”

It pretty well sums up much of the divide, and much of the question of “who should lead”. Autism is a spectrum. There is are divisions between adults and parents, and the degree of challenge the autistic faces. Not all “high functioning” autistics are self-advocates. Not all “low functioning” autistics are not self advocates. (and, yes, I hate those “functioning” terms). We need people to advocate for the rights of all on the spectrum. We need advocates who have experiences relevant to the various parts of the spectrum.

That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

There are many things that parents like myself–parents of young children with great challenges–should realize. This, of course, in my own humble opinion. I’ll list only a few.

It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

A common theme I read is from parents writing, “self-advocates are not as disabled as my kid. They can’t relate.” I really dislike the “more disabled than” idea, but accepting that–we parents aren’t as disabled as our kids either. Self advocates can have an understanding of our kids just as we can. Self advocates may have different priorities than our kids. And that’s where being allies comes into play. We support their priorities, they support those of our kids.

Whatever your goal for your kid, improvement, cure, recovery, education…whatever it is, isn’t “becoming capable of self-advocacy” a laudable goal for any kid, disabled or not?

Being an autistic self-advocate (or an autistic non-self-advocate) doesn’t make someone right, nice, friendly, or likeable. Just like being a parent doesn’t make one right, nice, friendly or likeable. No one is saying you have to accept whatever a self-advocate has to say, just like self-advocates don’t have to accept what parents have to say.

The thing about writing a piece like this is that it is sure to annoy someone. Many someones. As Ari Ne’eman wrote in his piece for TTPGTA: “As far as I’m concerned, if we’re uncomfortable, we’re making progress and we shouldn’t stop.”

Back to the idea of leadership. With the passing of Steve Jobs this week, I’ve heard his address to Stanford Graduates a number of times on the radio. One paragraph keeps standing out in my mind:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

He didn’t say, “find someone to follow” or “be a leader and find some people to follow you”. He said, “Don’t be trapped by dogma — which is living with the results of other people’s thinking.”

We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.

A very bad week for the XMRV causes disease idea

5 Oct

I opened a recent article with the statment: “Xenotropic murine leukemia virus-related virus (XMRV) has been suggested as linked to chronic fatigue syndrome and autism. This has been rather controversial in both cases.”

The story gets more tangled. The lead researcher promoting the idea has been fired. The Science Insider blog (affiliated with the journal Science) has an article: Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy. Trine Tsuderous at the Chicago Tribune has an article: High-profile 2009 chronic fatigue syndrome study in dispute: Lead researcher fired as journal, institute investigate alleged figure manipulation.

Yes, Judy Mikovits has been released from her post at WPI. The Institute has released a statement on their facebook page:

The Whittemore Peterson Institute is announcing the departure of Dr. Judy Mikovits from WPI. We wish to thank her for her previous work and commitment. The WPI remains committed to a comprehensive research program. Our research team and program remains active, and our lab open to authorized employees. We will continue the critical work of finding answers to M.E. and related diseases.We will use the opportunity created by the departure of Dr. Mikovits to do a full evaluation of our research lab and current research projects. WPI is dedicated to the highest standards in research and patient care, and to advocating for the patients, families and caregivers we exist to serve.

What happened? One big piece of this can be found on the ERV blog as XMRV and chronic fatigue syndrome: For your enjoyment– A magic trick. It really is worth going over there and reading through the discussion.

I am going to take two pieces of data, from two independent experiments, establishing ‘proof’ of two different concepts, presented in to different formats and to different events…

Yes, two figures were presented at different times–and with different interpretations. But, in the end, they were only one dataset.

As ERV points out in the comments section of her article:

As RRM stated, Im sure there is a TOTALLY REASONABLE explanation for this. Im SURE it wasnt intentional. But even if it were that damn post doc again– what does this say about QC at the WPI? What does this say about their standards? What does this say about how carefully and how critically Mikovits is looking at her own work?

The discovery of the two-figures-which-are-one and the release of researcher Mikovits from WPI comes after a huge blow to the science behind the proposed link between XMRV and Chronic Fatigue syndrome. From Science Insider:

The issue came to a head with the recent publication by Science of the nine-lab study. The so-called Blood Working Group, which included the labs run by Mikovits and Ruscetti, failed to reliably find XMRV or other gammaretroviruses in blinded samples from people who previously had tested positive for these viruses. Both Mikovits and Ruscetti co-authored the paper, which invalidated their own assays for XMRV.

Why bring this up on an autism blog? Because XMRV has been proposed as being linked to autism. More recent studies fail to find a link (e.g. PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism).

How did the XMRV/autism discussion get started? Well, as David Kirby wrote a few years ago:

As Dr. Mikovits explained to a television news program in Nevada, “It is not in the paper and not reported, but we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism. It certainly won’t be all, because there are genetic defects that result in autism. But there are also the environmental effects; there is always the hypothesis that, ‘My child was fine and then they got sick, and then they got autism.'”

So, the XMRV/autism story got started with unpublished data by the now fired Mikovits, who claimed that she found XMRV in the blood of autistic children.

For those who remember David Kirby, the idea of him taking extremely weak evidence and creating a sensationalist story out of it is not surprising. Acting without apparent regard for the harm he could be causing, Mr. Kirby linked XMRV to autism through vaccines. Classic David Kirby:

The discovery raises more questions than it answers. What, exactly, is it about immunization that might switch on XMRV viral expression? Could the effect of heavy metals upon cytokine balances be at play? Where did this retrovirus come from, and how did it apparently become so prevalent in children with autism? Did these children inherit the virus from a parent, or was there some other unexplained route of transmission? Why has the NIH said nothing about XMRV in association with autism, and did Dr. Insel know about these findings without sharing them with the IACC?

Mr. Kirby’s style is well represented in the above paragraphs. Pose sensationalist, unsupported ideas as questions. Gives him the chance to put his ideas out there while keeping himself at a distance from the statements.

Now that the XMRV research by Dr. Mikovits is in serious doubt, will David Kirby retract his article on the subject? Will he at least put out an article which informs his readers of the current state of research? Or will he quietly move on to his new project (Death at SeaWorld – Shamu and the Dark Side of Killer Whales in Captivity) without regard for the harm he has caused to the autism community?

I single out Mr. Kirby as an example of the sort of messenger who has promoted ideas like XMRV and autism or XMRV and chronic fatigue. The mercury-causation idea fell apart, but no word from people who promoted it a great deal (like David Kirby). What will happen now that XMRV and autism and XMRV and chronic fatigue are falling apart?

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