Archive | August, 2011

Why is Autism Speaks sponsoring a conference featuring Andrew Wakefield?

18 Aug

It’s no secret that the National Autism Association is a staunch supporter of Andrew Wakefield. Mr. Wakefield, of course, is the researcher whose work on MMR and autistic children promoted the vaccine/autism link. Mr. Wakefield’s work was fraught with ethical lapses and research fraud. In short, from my perspective, Mr. Wakefield may rank as the person who has caused the most harm within the autism communities in recent decades.

Check the speaker list for the upcoming NAA conference. I’ll draw your attention to two points. First, Andrew Wakefield is scheduled to speak. Second, Autism Speaks is listed as a sponsor of the conference, sharing space with an HBOT company and a mail-order medical laboratory.

Mr. Wakefield is scheduled to speak about his next book. He has been involved with a family in Arizona who are battling child protective services. Here is the blurb on his upcoming talk:

Hoping for Perpetual Sunshine

This presentation is the subject of a new book coming out the spring of 2012. It deals with the hazards of pursuing a diagnosis of Munchausen Syndrome by Proxy (MSBP) in children with an Autistic Spectrum Disorder (ASD), particularly those with gastrointestinal (GI) disease and/or dysfunction. Specifically, it reviews the symptomatic presentation of GI disorders and, the frequency and nature of GI disease in affected children. It discusses the history of MSBP and briefly reviews alleged cases involving “factitious” GI symptoms. The main part of the talk will describe the experience of one family, deconstructing the evidence against the parents and their alleged fabrication of their children’s health issues, in order to identify not only the shortcomings of the diagnosis itself, but also the systematic problems that arise out of institutionalized ignorance. Deficiencies on the part of Social Services, Child Protective Services, the judiciary, and the medical profession, are identified and analyzed in respect of the published science on the presentation, pathogenesis, and treatment of autism.

Autism Speaks has a choice in where to spend their money and where to spend their reputation. Sponsoring a conference which brings Andrew Wakefield to speak to a segment of the autism community is not a wise choice, in my opinion.

Study Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

16 Aug

It is known that the chances of having an autistic child are higher for families who already have an autistic child. This is the “recurrence risk”. In the past, the recurrence risk has been estimated at between 3 and 10%. A study just out (and discussed somewhat yesterday) puts the risk at something closer to 20% (18.7%). This is a fairly large study, where they monitored the baby siblings in families with an autistic child. They were watching these baby sibs and testing them to see which ones had an autism spectrum disorder (ASD). This makes this study much more powerful in that they are much less likely to miss any ASD baby sibs.

Here is the abstract:

OBJECTIVE: The recurrence risk of autism spectrum disorders (ASD) is estimated to be between 3% and 10%, but previous research was limited by small sample sizes and biases related to ascertainment, reporting, and stoppage factors. This study used prospective methods to obtain an updated estimate of sibling recurrence risk for ASD.
METHODS: A prospective longitudinal study of infants at risk for ASD was conducted by a multisite international network, the Baby Siblings Research Consortium. Infants (n=664) with an older biological sibling with ASD were followed from early in life to 36 months, when they were classified as having or not having ASD. An ASD classification required surpassing the cutoff of the Autism Diagnostic Observation Schedule and receiving a clinical diagnosis from an expert clinician.
RESULTS: A total of 18.7% of the infants developed ASD. Infant gender and the presence of >1 older affected sibling were significant predictors of ASD outcome, and there was an almost threefold increase in risk for male subjects and an additional twofold increase in risk if there was >1 older affected sibling. The age of the infant at study enrollment, the gender and functioning level of the infant’s older sibling, and other demographic factors did not predict ASD outcome.
CONCLUSIONS: The sibling recurrence rate of ASD is higher than suggested by previous estimates. The size of the current sample and prospective nature of data collection minimized many limitations of previous studies of sibling recurrence. Clinical implications, including genetic counseling, are discussed.

The full paper is free online.

Since this was already presented here and elsewhere, I’ll point out a few findings that I found interesting:

1) 41% of the baby sibs received autistic disorder diagnoses. The remaining 59% received PDD-NOS diagnoses.
2) The recurrence risk did not depend on the “functioning status” or “severity” of the autism for the first child. They used ADOS and IQ scores to measure “severity”.
3) the gender of the first autistic child does not increase the recurrence risk. So, if a family has an autistic daughter, the recurrence risk is the same as if the autistic child is a son. My recollection is that previous studies indicated a high recurrence risk if the older sibling was a daughter.

Autism Baby Siblings Study: recurrence risk 19%

15 Aug

Results of the MIND Institute’s baby sibling study have been published in the journal Pediatrics. The study puts the recurrence risk of autism at 19%. In other words, a family with one autistic child has, on average, a 19% chance that a subsequent child will be autistic. The study authors stress that the risk may be higher in some families and lower in others.

More discussion can be found in various news outlets carrying the story, including

http://m.heraldextra.com/news/science/health-med-fit/article_a90c6549-3444-5b6a-800a-85aba7234914.html

Subsequent births in families of children with disabilities: using demographic data to examine parents’ reproductive patterns.

14 Aug

A team at Vanderbilt University has looked into the question of whether families with disabled children are more or less likely to have more kids. They studied families with children with Down Syndrome and Spina Bifida. The reasons for this was that they could track these directly from the birth records. Disabilities like autism or intellectual disability are not diagnosed until later in life and, thus, would not be in the birth records.

The researchers found that this group of parents were more likely to have one ore more addtional children than parents whose children did not have these disabilities. We can speculate as to the reasons for this. An obvious speculation is the desire to have more siblings who can help nurture the disabled sibling in childhood, and the desire to have additional siblings to help advocate for the disabled sibling after the parents pass.

I would be very interested in whether this tendency for subsequent children would be true for families with an autistic child. There is a very different set of circumstances there. The recurrence risk for autism (or ASD’s) is high, about 20%. Also, there is no prenatal test as there is with Down Syndrome or Spina Bifidia. The counter argument is that given that autism is not diagnosed until later in life (3 years or older is not uncomon), the family might have made the decision to have subsequent children before learning of the child’s disability, or, at least, the specific nature of the disability.

Subsequent births in families of children with disabilities: using demographic data to examine parents’ reproductive patterns.

Abstract

The authors determined family reproductive patterns after the birth of a child with (vs. without) a disability. Using Tennessee birth records, the authors examined families of children with Down syndrome (N=1,123), spina bifida (N=368), and population group (N=734,189). Families of children with Down syndrome and with spina bifida were more likely to have subsequent children and larger family sizes than the population group. When a 1st-born target child was born, 28.8% of families had a 2nd child in the population group compared with 37.1% and 45.7% when the child had spina bifida or Down syndrome, respectively. Families of children with disabilities were more likely to have subsequent children regardless of maternal race, marital status, and educational level.

A week of bad news

12 Aug

The past week has been a busy one. For me, personally, as you might have surmised from the lack of posts for a few days. But, in terms of news stories, specifically bad news stories, it has been busy.

Consider this one: Karen McCarron Seeks New Trial, Convicted of Killing Autistic Daughter. This article by Kristina Chew discusses a news story: Convicted child killer petitions court for new trial.

The story of Katie McCarron was discussed a great deal around the time that I was coming online to look for information. Here’s how the Star summarizes the story:

Five years ago, Karen McCarron, an Illinois pathologist, suffocated her three-year-daughter Katherine “Katie” McCarron with a plastic bag in her mother’s house. McCarron then drove the body of her daughter back home and put her to bed as if she were asleep. She was found guilty of killing Katie in 2008, sentenced to 36 years in prison and is incarcerated at the Dwight Correctional Center.

It is just a horrible story of a beautiful little girl who should be growing up. Back when this story broke, it affected many, including Kev and others on the Autism Hub, a great deal. He wrote about the story (see articles under the category Katie)and ended up in communication with Katie’s grandfather, Mike McCarron. Mike responded to the Autism Hub (From Mike McCarron to the Autism Hub).

Mike, I wish your family peace. I wish I had more to offer.

In another news story discussed by Kristina, Mother Kills Self, Autistic Son, In Despair Over School Placement, Kristina writes:

On August 2, the bodies of psychiatrist Margaret Jensvold and her 13-year-old, Ben Barnhard, were found in their home in Kensington, Maryland, an upper-middle class suburb of Washington, D.C. Jensvold, a Johns Hopkins-educated psychiatrist specializing in women’s health who worked at Kaiser Permanente, had left a note:

“School – can’t deal with school system,” the letter began, Jensvold’s sister, Susan Slaughter, told The Associated Press.

And later: “Debt is bleeding me. Strangled by debt.”

The story was carried by Forbes as Md. mom who killed son agonized over school costs.

A third story came out just over a week ago discusses the case of the death of Jawara Henry. The Wall Street Journal carried the story as Supervisor Is Charged in Death of Patient. The story opens with:

A supervisor at a state-run psychiatric center on Staten Island was charged Wednesday in the death last year of an autistic patient undergoing treatment at the facility, authorities said.

Erik Stanley, of Middletown, N.J., used excessive force when he subdued Jawara Henry on Dec. 4, 2010, at the South Beach Psychiatric Center, suffocating the patient with pressure on his neck and torso, Staten Island prosecutors said.

I find these stories obviously very troubling. I also find them very difficult to write about. How can we balance the need to discuss these stories and make it clear that these deaths were all needless, while keeping respect for those directly affected? A writer can try to inform. A writer can express personal outrage. A writer can also use other people’s tragedy for his/her own purposes. It is that third level that slows me down in responding to these stories.

What can I say? There is no reason for Katie McCarron, Margaret Jensvold, Ben Barnhard or Jawara Henry to be dead. There is no excuse, no rationale which explains these events. I wish their families well. I wish them peace. I hope for justice.

California suspends Mark Geier’s medical license

10 Aug

California is the fifth state to suspend the medical license of a Maryland physician who chemically castrates disabled children. Mark Geier, who operates ASD Centers, is still licensed in six other states: Hawaii, Florida, Missouri, New Jersey, Kentucky and Illinois.

The St. Louis Post-Dispatch reports that Illinois has scheduled a preliminary hearing on Geier’s license for Aug. 22. The story hints that the Missouri Healing Arts Board may be investigating Geier as well:

A doctor who is disciplined in another state is also subject to discipline in Missouri and Illinois. A spokesman for the Missouri healing arts board would not confirm an investigation of Geier, whose license is active.

Mark Geier and his son, David, reportedly received a standing ovation from anti-vaccine activists at May’s cult-like AutismOne conference. But few in the movement have publicly defended their actions.

Four other states have suspended or revoked Geier’s privileges since April 27, when his home state of Maryland 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.

The Association of Autism Diagnosis With Socioeconomic Status

4 Aug

The CDC’ autism prevalence estimates are probably the most quoted values. Not too long ago, the estimate was 1 in 166. Then 1 in 150. About a year ago, the estimate was revised to 1 in 100.

But, these numbers are estimates. And, more importantly, these estimates spam a wide range. Autism prevalence estimates vary by state and by ethnicity.

The state with the highest prevalence estimate is New Jersey. A team in New Jersey has analyzed the most recent data for the relationship on factors such as race/ethnicity and household income.

What did they find? Kids from high income families are twice as likely to get an autism designation as kids from less affluent areas.

The prevalence estimate in wealthy areas? 17 per 1000. Or 1 in 59.

Here is the abstract:

Background: In 2007 the Centers for Disease Control and Prevention (CDC) reported a higher prevalence of autism spectrum disorder (ASD) in New Jersey, one of the wealthiest states in the United States, than in other surveillance regions. Objective: To examine the association of socioeconomic status (SES) with ASD prevalence. Methods: Information on eight-year-olds with ASD from four counties was abstracted from school and medical records. US Census 2000 provided population and median household income data. Results: 586 children with ASD were identified: autism prevalence was 10.2/1000, higher in boys than girls (16 vs. 4/1000); higher in white and Asian non-Hispanics than in black non-Hispanics and Hispanics (12.5, 14.0, 9.0, and 8.5/1000, respectively); and higher (17.2/1000 (95% CI 14.0-21.1)) in tracts with median income >US$90,000 than in tracts with median income ?US$30,000 (7.1 (95% CI 5.7-8.9)). Number of professional evaluations was higher, and age at diagnosis younger, in higher income tracts (p < .001), but both measures spanned a wide overlapping range in all SES levels. In multivariable models race/ethnicity did not predict ASD, but the prevalence ratio was 2.2 (95% CI 1.5-3.1) when comparing highest with lowest income tracts. Conclusions: In the US state of New Jersey, ASD prevalence is higher in wealthier census tracts, perhaps due to differential access to pediatric and developmental services.

Listeners prefer the laughs of children with autism to those of typically developing children.

4 Aug

When you see a paper with a title like that, you have to read the abstract. OK, I have to. I didn’t expect this to be profound. It is interesting, though. Right up the the last ( and in my opinion unfortunate) sentence.

The purpose of this study was to investigate the impact of laugh sounds produced by 8- to 10-year-old children with and without autism on naïve listeners, and to evaluate if listeners could distinguish between the laughs of the two groups. Results showed that listeners rated the laughs of children with autism more positively than the laughs of typically developing children, and that they were slightly above chance levels at judging which group produced the laugh. A subset of participants who reported listening for “uncontrolled” or “longer” laughs were significantly better at discriminating between the laughs of the two groups. Our results suggest that the laughs of children with autism have the potential to promote the formation of relationships.

Scientific fraud in the UK: The time has come for regulation

3 Aug

In a recent article in the Guardian, Brian Deer poses the question of whether regulation needs to be applied to scientific research. The article, Scientific fraud in the UK: The time has come for regulation, Mr. Deer states:

Fellows of the Royal Society aren’t supposed to shriek. But that’s what one did at a public meeting recently when I leapt onto my hobbyhorse: fraud in science. The establishment don’t want to know. An FRS in the audience – a professor of structural biology – practically vaulted across the room in full cry. What got this guy’s goat was my suggestion that scientists are no more trustworthy than restaurant managers or athletes.

Restaurant kitchens are checked because some of them are dirty. Athletes are drug-tested because some of them cheat. Old people’s homes, hospitals and centres for the disabled are subjected to random inspections. But oh-so-lofty scientists plough on unperturbed by the darker suspicions of our time.

Mr. Deer’s article mentions a just release UK Government report “Peer review in scientific publications” Here is the final paragraph from the summary for that report:

Finally, we found that the integrity of the peer-review process can only ever be as robust as the integrity of the people involved. Ethical and scientific misconduct—such as in the Wakefield case—damages peer review and science as a whole. Although it is not the role of peer review to police research integrity and identify fraud or misconduct, it does, on occasion, identify suspicious cases. While there is guidance in place for journal editors when ethical misconduct is suspected, we found the general oversight of research integrity in the UK to be unsatisfactory. We note that the UK Research Integrity Futures Working Group report recently made sensible recommendations about the way forward for research integrity in the UK, which have not been adopted. We recommend that the Government revisit the recommendation that the UK should have an oversight body for research integrity that provides “advice and support to research employers and assurance to research funders”, across all disciplines. Furthermore, while employers must take responsibility for the integrity of their employees’ research, we recommend that there be an external regulator overseeing research integrity. We also recommend that all UK research institutions have a specific member of staff leading on research integrity.

I find it odd that they are focusing on peer-review, which seems to me to be a narrow field of research integrity. That said, the report is recommending that “an oversight body for research integrity” be formed.

Back to Mr. Deer’s article. He quotes a Dr. David Taylor on why such oversight might not be needed:

“It is important to recognise that in the long term it matters little if published material is inaccurate, incompetent or even fraudulent, since the advance of the scientific canon only uses that material which turns out to fit the gradually emerging jigsaw,” is how Dr David Taylor, a former executive at AstraZeneca, expressed this tenet in a recent submission to the House of Commons science and technology committee, which publishes a report today.

I think that Dr. Taylor is taking a rather idealistic view of research. Yes, there is a self-correcting nature to research. Those results which are wrong will not be replicated and will, over time, fade.

But, how much time does it take for the self-correction? Autism research provides, unfortunately, a great example of the persistence of poor level, even fraudulent, research. For example, the concept of an epidemic caused by vaccines, either through the MMR vaccine or through thimerosal, was promoted by research which ran the gamut from reasonable speculation to outright fraud. One of the prime examples of research fraud which the committee cited in the report is on the MMR/autism hypothesis.

The problem is that while we wait for this “self correction”, real people suffer the consequences. Aside from the mental anguish it has caused, the vaccine/autism epidemic idea has spawned an industry of alternative medicine practitioners and treatments. These treatments run the gamut from worthless/harmless to powerful medicine and potentially dangerous.

Researchers, especially those who are publicly funded and/or publish, hold a public trust. Certainly, researchers hold a trust to use public funds wisely. Unfortunately, published research, even bad published research, is used to promote non-science agendas. The term “tobacco science” gets thrown around a lot, but the fact is that sometimes journal publications are less about reporting results as making a political or business statement. This happens for both “big pharma” and for “little pharma“. The harm from research fraud, or even just heavily biased research, is not limited to medicine. But I would posit that the most harm is done in the area of medical research.

As an American, I will be only an observer in if/how the UK pursues regulation of research integrity. However, the damage from research fraud knows no boundaries. I don’t know if there is an optimal solution which reduces the damage of research fraud through regulation while still promoting the freedom of self-direction for researcher. Is there a need? I’d say yes. Taking the Wakefield affair as an example, there may be few examples of really damaging fraudulent research, but the damage of even these few examples can be very great.

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.

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