Archive by Author

Autism does not cause divorce

19 May

A new study at IMFAR reports:

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

This is the first scientific study (I believe) that has actually addressed this question. We can of course all recall the utterly unfounded scare stories of 80% put about by know-nothings such as Jenny McCarthy who said on an episode of Oprah:

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

and which autism organisation was that? You might not be amazed to discover its the equally know-nothing bunch at the National Autism Association.

NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.

Get a clue NAA – maybe you should’ve done the research before letting rent-a-gob loose on the Oprah show.

Vaccine gestapo song lyrics–fact or fiction?

18 May

I don’t do polls as a rule, but it’s time to test some boundaries. Below are song lyrics. I’d like honest answers:

a) Sullivan made these up
b) Someone else made them up as a spoof on vaccine-refusers
c) These are serious lyrics and will be used in an upcoming vaccine choice rally

They have swastikas on their shoulders
They’re such patriotic soldiers
They’re like a militia in Montana
They’re a government agency in Atlanta

Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo! Vaccine gestapo!

They’re a medical military priesthood
Just like Adolf they preach the greater good
Consciencious objectors are just little snot
Why don’t you quit complaining and go get your shots

Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo! Vaccine gestapo!

can we see your papers
Have you had all your shots?
your papers please, your papers please
Have you had all your shots?
They’re got a one track mind of domination
They say vaccines are your obligation
If a bad reaction turns you into a vegetable,
They’ll sneer and tell you you’re expendable

Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo!

Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

17 May

One of the topics that comes up over and over online is “The Amish don’t vaccinate” and “the Amish don’t have autism”. Both statements are incorrect. The Amish have no religious prohibition against vaccination and they do have autism.

The question of autism amongst the Amish has been studied and is being presented at the IMFAR autism conference this week. The paper,
Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish, demonstrates a preliminary prevalence of 1 in 271 as the prevalence of autism amongst Amish children in two Amish communities: Holmes County, Ohio and Elkhart-Lagrange County, Indiana.

J. L. Robinson , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
L. Nations , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
N. Suslowitz , Center for Human Genetics Research, Vanderbilt University, Nashville, TN
M. L. Cuccaro , Human Genetics, University of Miami School of Medicine, Miami, FL
J. Haines , Center for Human Genetics Research, Vanderbilt University, Nashville, TN
M. Pericak-Vance , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
Background:

The prevalence rate of Autism Spectrum Disorders (ASD) appears to be steadily increasing. The latest report from the Center for Disease Control estimates the rate of ASD is 1 in 91 children (Kogan, 2009), up from 1 in 150 in 2007. Understanding the seeming changes in ASD prevalence require careful exploration of genetic and environmental factors. A method that has proven useful in dissecting the etiology of complex diseases is the study of isolated populations. One population isolate that has been studied extensively is the Amish, with well over 250 genetic studies. Expanding studies of autism to the Amish may provide important information about etiology. A crucial first step in this process is a feasibility study to determine ASD prevalence rates in this population.

Objectives:

This study presents preliminary data on the estimated prevalence of ASD among the Amish in two Amish dominant counties as part of a larger epidemiological study. All children between ages 3 to 21 in those counties will be screened for the presence of an ASD.

Methods:

Screening occurred in, two of the largest Amish communities in the United States. Trained clinicians ascertained door to door using a published Amish Directory as a guide. Families were approached and asked to participate in a brief interview regarding their children. Two primary screening instruments were used: the Social Communication Questionnaire (SCQ) and the DSM-IV-TR Checklist (a tool created by the authors). A Vaccination History and a brief family history including questions specific to the ASD phenotype were also taken. Children screening positive on either the SCQ or DSM-IV-TR Checklist were seen for a more comprehensive clinical evaluation by two licensed psychologists. This evaluation included the Autism Diagnostic Observational Schedule (ADOS) and Autism Diagnostic Interview (ADI).

Results:

From September 2008 to October 2009, 1899 Amish children were screened in the two Amish communities. A total of 25 children screened positive for ASD on either the SCQ or the DSM-IV-TR checklist. A total of 14 screened positive for ASD on both screeners. Of those 25 children, 14 were evaluated and seven children were confirmed as having a diagnosis of ASD using the ADI and/or ADOS, and clinical judgment. Interestingly, four of the seven only met ASD criteria on the ADOS but not the ADI. Three of the four who were not diagnosed by the ADI only missed criteria on the Behavioral Domain, which may be attributable to the reporting style of Amish caregivers.

Conclusions:

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

Storm in a teacup

15 May

A piece from the Philadelphia Inquirer demonstrates how various vaccine scares begin.

Using powerful new DNA technology, Delwart’s San Francisco team detected fragments of a pig virus in GlaxoSmithKline’s Rotarix, which protects babies from a diarrhea-causing infection. The pig virus is common in pork products and is not known to cause disease in animals or humans.

We expected to reassure; we ended up not reassuring,” Delwart, a virologist with the Blood Systems Research Institute, said this week. “We ended up creating quite a bit of a storm.

Yet of course the usual suspects used this total non-entity of a story to further their own anti-vaccine agenda:

This “is an important wake-up call for industry and government,” said Barbara Loe Fisher, president of the National Vaccine Information Center.

How exactly isn’t explained. This is after all a story where a vaccine carries a component that *is not known to cause disease* . Neither the FDA or the European Health Agency said the vaccines containing the component shouldn’t be used. As Paul Offit said:

“You could apply this new technology to things gummed by a 6-month-old – a Cheeto, a piece of apple – and find much worse” microbes than the pig virus, Offit said. “How does it help to find things that are not known to be harmful? It’s like taking thimerosal out of vaccines. Has that made vaccines safer? No.”

Or more dangerous.

We *have* to start getting over our collective heebie-jeebies every time something perfectly safe is found in a vaccine and start realising that the people who are advocating that we _do_ have an attack of the heebie-jeebies are those who have a single item agenda – promoting anti-vaccineism.

Mirror Neurons theory of autism refuted by fMRI study

14 May

Mirror neurons come up a lot in autism research. Perhaps the mirror neuron theory is, as one researcher put it, exaggerated with little evidence to support it.

This is discussed in the Simons Foundation sfari blog. Also, the authors have made a video to discuss the mirror neuron theory and their recent experiment (again, I found this on the sfari blog). I apologize that it is not closed captioned.

http://vimeo.com/moogaloop.swf?clip_id=11711513&server=vimeo.com&show_title=0&show_byline=0&show_portrait=0&color=6854a1&fullscreen=1

Normal Movement Selectivity in Autism from Simons Foundation on Vimeo.

I don’t want to just rephrase what has been said in these two presentations, so I will refer you to the sfari blog and the video from the researchers.

International Meeting for Autism Research abstracts are online

14 May

INSAR, the International Society for Autism Research, hosts a conference each year. IMFAR, the International Meeting for Autism Research is the largest autism conference held.

IMFAR is being held in Philadelphia, Pennsylvania (US) this year, May 20 to May 22nd. The conference abstracts give you an idea for the latest research trends.

You can search the program online. Alternatively, you can download the program or the abstracts as pdf’s.

Autistic researcher Michelle Dawson is listed as the anchor author on a study, Perception in Autism, 2006 – 2009: Updating the Enhanced Perceptual Functioning Model.

Dr. Lisa Croen from Kaiser Permanente has a paper on whether maternal infections are linked to autism. Maternal Infection During Pregnancy and Risk of Autism Spectrum Disorders. They find an increased risk due to bacterial infections in the second half , similar to results from a recent paper from Denmark.

Dr. Gail Windham’s group has a study, Autism and Distribution of Hazardous Air Pollutants at Birth in Southern California. This is a follow on to their study of Hazardous Air Pollutants in Northern California (Autism Spectrum Disorders in Relation to Distribution of Hazardous Air Pollutants in the San Francisco Bay Area) which is often cited in support for the mercury-causation hypothesis. The conclusion to the news study states: ” Examining HAPs in another region of California with higher concentrations and larger numbers did not replicate the original results. Metals as a group were not associated, but instead aromatic solvents yielded the highest risks”

Prof. David Mandell of the University of Pennsylvania has large number of papers. I follow his work since one of his areas involves under-represented groups such as minorities and adults. For example, one of his papers is Services Utilized by Adults with Autism Spectrum Disorders.

There are a number of papers discussing regression. For example, about 33% of autistic children underwent some form of regression in this study. Dr. Swedo’s team at NIMH looked closer at regression in autistic children in Regression Histories in Young Children with Autism: Timing and Associations Out of 185 children whose parents were interviewed:

Among the 80 cases with significant regression, parents of 26 children indicated physical illness/medical issues may have been related to loss of skills, and 21 responses indicated an associated psychosocial stressor (in 7 of these cases, both illness and psychosocial stressors were reported). However, only 8 reports clearly indicated a sudden loss of skills. Five of the 8 cases with sudden loss included both loss of language loss and social engagement/responsiveness. Two of the sudden loss cases were reported to be associated with a physical illness/medical issue and 3 were reported to be associated with a psychosocial stressor (with 1 reported to have both).

Obviously, there is more. Much more. I’m still working my way through the program book. D’oC will be attending IMFAR and blogging here at LeftBrainRightBrain with support from the Autism Science Foundation.

US Court of Appeals denies vaccine court case

14 May

The first of the vaccine court autism cases has been denied by the United States Court of Appeals, Federal Circuit. The Vaccine court (or, more accurately, the U.S. Court of Federal Claims) grouped the autism claims into an “Omnibus”, something like a class action case, where evidence to prove vaccines cause autism was presented in a few “test cases”, rather than hearing all the cases individually. The Omnibus Autism Proceeding heard six test cases, three on the theory that the MMR vaccine causes autism and three on the theory that thimerosal (a mercury containing perservative) causes autism.

The appeals decision is for the test case of Yates Hazelhurst, one of the MMR test cases. The case was summarized by the Special Master who decided the case:

[P]etitioners assert that the measles component of the MMR vaccine causes an immune dysfunction that impairs the vaccinee’s ability to clear the measles virus. Unable to properly clear the measles virus from the body, the vaccinee experiences measles virus persistence which leads to chronic inflammation in the gastrointestinal system and, in turn, chronic inflammation in the brain. Petitioners argue that the inflammation in the brain causes neurological damage that manifests as autism.

The Special Master (essentially the Judge in the vaccine court) denied the claim. The family appealed to the Court of Federal Claims, who upheld the decision. The recent decision is from the United States Court of Appeals, Federal Circuit, making this the second appeal affirming the original decision.

The family appealed on the basis, as the appeals judge put it:

On appeal to this court, the Hazlehursts argue that the special master improperly relied on certain evidence that should have been excluded and disregarded other evidence that should have been considered.

The MMR theory for autism causation relies on the notion that the measles virus from the vaccine persists in the guts of children. This, in turn relies on research by Dr. Andrew Wakefield’s team and in particular, the Unigenetics laboratory. The government brought in a witness, Dr. Stephen Bustin, to refute the validity of the results from the Unigenetics lab. Dr. Bustin’s testimony and level of expertise were very clear in showing that the Unigenetics results were faulty.

The special master found that Dr. Wakefield’s work had been largely discredited within the scientific community and that none of the studies indicating the presence of measles virus in autistic children had been successfully replicated by an accredited laboratory independent of Dr. Wakefield or Unigenetics. In particular, the special master found that Dr. Wakefield’s early 1990s research on persistent measles infections was reviewed by the Medical Research Council of the United Kingdom and found to lack important controls and sufficiently specific reagents for detecting measles virus. She also found that Dr. Wakefield’s subsequent research was dismissed by the scientific community as methodologically unsound. In that regard, she noted that 10 of 12 co-authors on Dr. Wakefield’s controversial 1998 article in the medical journal The Lancet subsequently retracted their support for the article’s conclusion that there is a potential causal link between the MMR vaccine and autism.

The Special Masters allowed the petititioners (including the Hazelhursts) time to rebut Dr. Bustin’s testimony, through cross examination and through documentation from the UK MMR litigation. The petitioners did not avail themselves of this opportunity.

Over objection, the government sought to introduce Dr. Bustin’s reports and testimony regarding the Unigenetics laboratory, which, by that time, had gone out of business.[ 2 ] The special master in the Cedillo case provisionally admitted the evidence. The three special masters in the omnibus proceeding then deferred decision on whether to rely on that evidence and stated that they would “favorably consider joining in a request” by the petitioners “for the release of relevant reports” from the UK litigation. The record remained open for more than a year following the Cedillo hearing to afford the petitioners sufficient time to present rebuttal evidence, to conduct additional cross-examination of Dr. Bustin, and to obtain documents from the British court. However, none of the petitioners recalled Dr. Bustin for further questioning or applied for access to any of the materials from the UK litigation.

The Hazelhurst’s argued that evidence should have been allowed that was not. In particular, they argued that some unpublished results demonstrate the persistent measles theory.

The special master further concluded that the unpublished and preliminary findings of the Walker group should not be accorded significant weight. She observed that Dr. Hepner had declined to “draw any conclusions about the biological significance” of the investigators’ findings and had testified that negative controls were not included with each experimental run. The special master also noted that the petitioners’ experts based their opinions on the characteristics of the “wild-type” measles virus, as opposed to the vaccine-strain measles virus, which is far less virulent and replicates poorly in the human body.

In the end, the appeals judge ruled that there was no reason to overturn the original decision:

Because we find no error in the special master’s consideration of the evidence, we also find no error in her decision to discount Dr. Corbier’s opinion that the MMR vaccine caused Yates’s autism. By Dr. Corbier’s own admission, his opinion depended heavily on the reliability of the scientific studies purporting to show measles virus persistence in autistic children.

Compensation under the Vaccine Act is limited to those individuals whose injuries or deaths can be linked causally, either by a Table Injury presumption or by a preponderance of “causation-in-fact” evidence, to a listed vaccine. The special master concluded that the Hazlehursts’ evidence failed to demonstrate the necessary causal link, and the petitioners have not identified any reversible error in the special master’s decision reaching that conclusion.

The petitioners now have the choice of appealing to the U.S. Supreme Court. As noted above, the Supreme Court hears cases which help define laws and this does not appear to be such a case. It would seem unlikely, then, that the Court would agree to hear this case. If so, this is the end of the appeals for the Hazelhurst’s in their case against the U.S. government. The next step would, then, be to take their case to civil court against the vaccine manufacturers. Such cases have not been successful so far. Civil cases require a higher level of evidence and expertise than the vaccine court. Having failed in the Federal Court, where the rules are more favorable to the petitioners, it would seem a difficult battle to win the case in civil court.

Byrd and Melanie Billings

13 May

Byrd and Melanie Billings were adoptive parents. They took care of disabled children, including autistic children. New stories vary on how many kids the Billings’ had, but one states that they had 16 kids, 12 of whom were adopted. Many of their children were disabled, including autism and Down syndrome.

I’m am in awe of these people.

Unfortunately the way I’ve heard about this family is through tragedy. Apparently a small group (seven men and a woman) entered their home and murdered them. Their children were present. This happened last year, but some of the people involved in this murder have decided to cooperate in return for lower sentences.

Byrd and Melanie Billings Murder: Teen Pleads in Fla. Slaying of Wealthy, Adoptive Parents

More here: Billings suspect enters plea of no contest

Here is video from last year, talking about the case. But it talks about the family as well.

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf

An older sibling plans to care for the 13 children.

Mike Stanton Speaks

13 May

The following is taken from a piece from Secondary Education.

A leading expert on autism has said that mainstream schools should re-evaluate how they respond to children with Autistic Spectrum Disorder (ASD).

According to Mike Stanton, a teacher at the George Hastwell School in Cumbria, which caters for children with severe learning difficulties, many schools often treat autism as a behavioural problem rather than a communication problem.

Instead of viewing difficult students’ actions as “challenging behaviour”, he encourages teachers to take a different attitude and consider what lies behind the situation.

By trying to understand why the pupil is reacting in a certain way, Mr Stanton thinks that the problem of strained relationships between teachers and autistic children – sometimes caused when the child is asked to do something they do not want to – could be avoided.

“There’s a thin line between fight and flight in autistic children,” he said.

Mr Stanton told us this “fine balance” can be more sensitively addressed in the classroom by looking at two principal ASD issues: time and space.

Unstructured time and social interaction are difficult for autistic children, he says, but strategies can be implemented to make these easier. For example, providing respite from the hustle and bustle of the school in the form of a quiet room, or structured, quiet activities such as playing chess.

Beth Reid, policy manager for the National Autistic Society, agrees that there are basic things that can be done, such as changing the ways in which autistic children are spoken to.

For example, as people with ASD can often take things literally, teachers can avoid using complicated, metaphorical language. She told us: “We can be more aware of the environment that they are sensitive to.”

However, Mr Stanton feels that beyond the school gates, services and provisions should be put in place to more effectively tackle barriers such as a lack of teacher training, and the examination system.

He said: “Mainstream schools operate under the burden of Ofsted inspections and exams. To change this, schools should be able test competencies, instead of having to implement stressful exams.”

Mr Stanton believes that the government should do more to reward schools that take on less-able children. He continues: “It is wrong that a school which takes children no one wants can be classed as a ‘failing school’.”

Furthermore, Mr Stanton claims that much of the research done into teaching autistic children is not getting through to educational establishments because the researchers themselves are using the wrong tactics.

“Teachers are bombarded by new initiatives and people telling them to change their approach,” he told us. “If the people doing the research could go into schools and find out what they need help with and what they can change, then that might work.”

Despite this, Mr Stanton says that things are gradually changing for the better, referring specifically to the Restorative Practices programme. Although not autism-specific, the programme’s approach has been found to be highly effective. Instead of attributing blame, it focuses on repairing relationships. By asking children questions like “what happened?” and “how did you feel?” a more co-operative response is elicited than if they feel accused.

Training for the programme is currently taking place in special needs schools across the country, and in some mainstream schools. However, a significant lack of awareness still exists about ASD.

Ms Reid continued: “I know of schools that are doing excellent work but I still hear of establishments that don’t think autism exists and perceive it as naughtiness.”

Mr Stanton added: “There is still a huge amount of ignorance surrounding ASD and people often don’t take it seriously.

“There is not enough respite provided for autistic children, and not enough trained staff. Also, those who are trained are overworked.”

Nature Fubar

13 May

Nature, the usually reputable Science magazine have launched a Scitable Autism section and with it screwed up their usual impeccable attention to detail.

Who for example thought it necessary to put:

Determining the cause of — and the cure for — autism is crucial for our society

I wonder. And who thought it necessary to link to no less than three anti-vaccine links on the home page of this….blog? Wiki? Two links to Autism Speaks whose controllers recently attended a DAN! conference and one link to ARI itself.

Its a ridiculous and desperately sad state of affairs when even Nature, that bastion of good science resorts to scaremongering about autism and promoting an anti-vaccine viewpoint.