Andrew Wakefield’s many statements that MMR causes autism

8 May

One of the themes that has grown in the past couple of years that Andrew Wakefield never said MMR causes autism. Rather, the story goes, he was a cautious researcher who merely reported what parents told him and called for more research to be done.

Here is an example by Mr. Dan Olmsted of the Age of Autism blog:

That Early Report – which appeared in 1998 in the Lancet, Britain’s other leading medical journal – noted that in eight of the 12 children (including Thomas’s), parents linked the onset of symptoms to the MMR shot, and it called for more research to see if a link in fact existed. It said no link to the MMR was established by the simple case series report.

Despite that cautious approach, the report and its aftermath sparked a firestorm that, fueled by Deer, ultimately led to Wakefield losing his medical license and to the Lancet retracting the report. Yet thousands of parents continue to support Wakefield and describe the same sequence of shot and symptoms as parents in the original case series. Mainstream media, medical groups, public health officials and pharmaceutical companies say any link has been discredited.

For those who have actually followed the Wakefield/MMR story, the idea that Mr. Wakefield’s approach could be described as “cautious” is difficult to swallow. The idea that the “firestorm” was fueled by Mr. Deer is an odd assertion at the best. Mr. Wakefield’s now-retracted Lancet paper was published coincident with an anything-but-cautious press conference in February 1998. Mr. Deer started reporting in the story in February of 2004. But this is off topic. Mr. Wakefield is repeatedly cited as merely calling “for more research to see if a link existed”.

Mr. Olmsted is not the only one to use the “only called for more research” theme. Dr. Bob Sears, for example, stated:

1. Dr. Wakefield’s study never claimed there was a link between the MMR and autism – it only suggested a possible correlation between the MMR vaccine triggering intestinal inflammation which seems to occur in some children with autism. He basically called for MORE research to be done on this.

To be fair, the “only called for more research” theme goes back quite a way. Here is a news story from 2003.

The problem for Mr. Wakefield’s supporters is that Mr. Wakefield did not limit his discussion to the Lancet. As already noted, he held a press conference to announce his results and has made many more statements over the years. More to the point, Mr. Wakefield *did* say that the MMR causes autism.

Here is a collection of Mr. Wakefield’s statements which range from suggesting a possibility that the MMR causes autism to outright claiming that he “has shown” that the use of the MMR vaccine causes autism.

Mr. Wakefield’s patent application states clearly and unequivocally that the MMR vaccines has “been shown” to cause “pervasive developmental disorder”:

“It has now also been shown that use of the MMR vaccine (which is taken to include live attentuated measles vaccine virus, measles virus, mumps vaccine virus and rubella vaccine virus, and wild strains of the aforementioned viruses) results in ileal lymphoid nodular hyperplasia, chronic colitis and pervasive developmental disorder including autism (RBD), in some infants.”

And also

I have also found that regressive behavioral disorder (RBD) in children is associated with measles, mumps and rubella vaccination.

More examples include:

In the 1998 Lancet paper (now retracted), the MMR is referred to as one of the “the apparent precipitating events”

In sworn testimony in a congressional hearing Mr. Wakefield states that an “environmental insult” (previously discussed at length as vaccination) “in many children, clearly, the subset of autistics, it leads to gut infection and damage…”

So finally, in summary, we have an environmental insult in perhaps a genetically susceptible child. The problem is that if you go to Sweden now, autism affects over 1.2 percent of the pediatric population. So if there is a genetic background, it is clearly widely distributed within the population. We believe that in many children, clearly, the subset of autistics, it leads to gut infection and damage; that leads to an ingress, an impaired metabolism, degradation of these chemicals from the gut which then get through and impact upon the brain.

In the video for the press conference for his (now retracted) 1998 Lancet paper, Mr. Wakefield stated that the single (monovalent) vaccines are “safer than the polyvalent”. How can they be safer if there isn’t a proven link to autism?

My opinion, again, is that the monovalent, the single vaccines, measles, mumps and rubella, are likely in this context to be safer than the polyvalent vaccine.

and his feeling is that “the risk of this particular syndrome developing is related to the combined vaccine…”:

Again, this was very contentious and you would not get consensus from all members of the group on this, but that is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR, rather than the single vaccines.

From the Power of One Idea” rally, Washington DC, April 21, 2002. Mr. Wakefield informs the public that public health officials have failed and “Among the reasons for this failure is the fact that they are faced with the prospect that they themselves may be responsible for the epidemic”:

We are in the midst of an international epidemic. Those responsible for investigating and dealing with this epidemic have failed. Among the reasons for this failure is the fact that they are faced with the prospect that they themselves may be responsible for the epidemic.

Therefore, in their efforts to exonerate themselves they are an impediment to progress. I believe that public health officials know there is a problem; they are, however, willing to deny the problem and accept the loss of an unknown number of children on the basis that the success of public health policy – mandatory vaccination – by necessity involves sacrifice.

Neither I, nor my colleagues subscribe to the belief that any child is expendable. History has encountered and dealt with such beliefs.

You, the parent’s and children, are the source of the inspiration and strength for our endeavours; our quest for truth through science – a science that is compassionate, uncompromising and uncompromised.

I do not mean to stir you to mutiny, but be assured that armed with this science it is in your power to force this issue, in your pediatricians office, in Congress, in the Law Courts.

Keep faith with your instincts. They have served you well.

From a news story (Shame on officials who say MMR is safe) in 2001, Mr. Wakefield is quoted discussing how there are “long-term adverse reactions that I believe we are now seeing”.

Our new paper is not anti-vaccine. It is about the safest way in which to deliver these vaccines to children in order to protect them against acute infectious disease and against the long-term adverse reactions that I believe we are now seeing

From a BBC news program in 2002. The regression following MMR is referred to as “not a coincidence”:

WAKEFIELD: .. these children received not one dose but three doses of the MMR vaccine, and what we see in many of these children is a double hit phenomenon. They regress after the first dose and then they regress further after the second dose. This child did not receive his first MMR vaccine until he was 4 years 3 months of age. He then deteriorated into autism, a disintegrative disorder. He then received his second dose at 9 years of age and disintegrated catastrophically. He became incontinent of faeces and urine and he lost all his residual skills. This is not coincidence.

This is not to be considered an exhaustive list. I won’t be surprised if more quotes from Mr. Wakefield are in the media. But these should suffice: Mr. Wakefield has, repeatedly, stated that MMR causes autism.

Services for adults with an autism spectrum disorder

7 May

Paul Shattuck is one of those people I greatly admire. He and his group ask important questions in areas which are generally given low levels of attention. Regular readers to Left Brain/Right Brain will (I hope) recognize that improving the research base for knowledge about autistic adults is a high priority of mine. I can’t say as I was exactly pleased to see the abstract below, as it points out the lack of knowledge that we have. But I was pleased to see this topic highlighted. The study (which I have not seen in full yet) is Services for adults with an autism spectrum disorder.

The need for useful evidence about services is increasing as larger numbers of children identified with an autism spectrum disorder (ASD) age toward adulthood. The objective of this review was to characterize the topical and methodological aspects of research on services for supporting success in work, education, and social participation among adults with an ASD and to propose recommendations for moving this area of research forward. We reviewed the literature published in English from 2000 to 2010 and found that the evidence base about services for adults with an ASD is underdeveloped and can be considered a field of inquiry that is relatively unformed. Extant research does not reflect the demographic or impairment heterogeneity of the population, the range of services that adults with autism require to function with purposeful lives in the community, and the need for coordination across service systems and sectors. Future studies must examine issues related to cost and efficiency, given the broader sociopolitical and economic context of service provision. Further, future research needs to consider how demographic and impairment heterogeneity have implications for building an evidence base that will have greater external validity.

It is amazing that after a decade of intense focus on autism research, we know so little. I greatly appreciate Prof. Shattuck’s team taking the time to review the literature. It’s time to put some major effort into filling in these knowledge gaps.

Minnesota funds Somali autism prevalence study

3 May

From the Minnesota Daily: U to research rate of autism in Somali community.

Parents and others in Minnesota’s Somali community are concerned about the prevalence of autism in children. Now, for the first time, state funds will go to researching autism in that community.

The health and human services omnibus bill Gov. Mark Dayton signed Friday allocates $200,000 to the Minnesota Department of Health to work with the University of Minnesota on the research.

The Somali community in Minnesota has been discussed a great deal online due to the apparently high prevalence rates there.

Parental socioeconomic status and risk of offspring autism spectrum disorders in a Swedish population-based study.

2 May

In many autism prevalence studies, higher socio-economic status (SES) for the parents is correlated with higher autism rates in the children of those families. While a conclusive reason for this has not been shown, it has been conjectured that the SES variability could be due to social influences such as access to care.

A recent study from Sweden shows the opposite. In this study, lower income families and children of parents with manual occupations show higher autism prevalence:

OBJECTIVE:
Epidemiological studies in the United States consistently find autism spectrum disorders (ASD) to be overrepresented in high socioeconomic status (SES) families. These findings starkly contrast with SES gradients of many health conditions, and may result from SES inequalities in access to services. We hypothesized that prenatal measures of low, not high, parental SES would be associated with an increased risk of offspring ASD, once biases in case ascertainment are minimized.

METHOD:
We tested this hypothesis in a population-based study in Sweden, a country that has free universal healthcare, routine screening for developmental problems, and thorough protocols for diagnoses of ASD. In a case-control study nested in a total population cohort of children aged 0 to 17 years living in Stockholm County between 2001 and 2007 (N = 589,114), we matched ASD cases (n = 4,709) by age and sex to 10 randomly selected controls. We retrieved parental SES measures collected at time of birth by record linkage.

RESULTS:
Children of families with lower income, and of parents with manual occupations (OR = 1.4, 95% CI = 1.3-1.6) were at higher risk of ASD. No important relationships with parental education were observed. These associations were present after accounting for parental ages, migration status, parity, psychiatric service use, maternal smoking during pregnancy, and birth characteristics; and regardless of comorbid intellectual disability.

CONCLUSIONS:
Lower, not higher, socioeconomic status was associated with an increased risk of ASD. Studies finding the opposite may be underestimating the burden of ASD in lower SES groups.

I haven’t been able to view the full study yet, so I am not sure what influences the authors may be implicated. What they do suggest is that the autism prevalence in lower SES groups may be underestimated in many prevalence estimates. I don’t think this will come as a surprise to many who consider the lower prevalence in the lower SES groups to be an indication of social factors at play.

Twitter Chat with autism experts Wednesday at 1 p.m. ET

2 May

USA Today has an article discussing an autism chat on Twitter scheduled for tomorrow (Wednesday) at 1pm Eastern Time. The article is copied below (with apologies to USA Today): Chat with autism experts Wednesday at 1 p.m. ET.

Questions about autism science, causes, support? Join our live chat with health reporter @LizSzabo as she talks with experts, families at 1 p.m. Wednesday May 2.

The USA’s top experts will weigh in, including: Dr. David Amaral of the University of California-Davis MIND Institute; Dr. Sarah Paterson of Children’s Hospital of Philadelphia; Dr. Sarah Spence of Children’s Hospital Boston; Alison Singer of the Autism Science Foundation, Dr. Alycia Halladay, Autism Speaks‘ Director for Environmental Research, and Lisa Goring, Autism Speaks’ vice president of family services.
Bring your questions and follow #autismchat.
New to Twitter chatting?
Here’s how to get started.

1) Create an account at Twitter.com.

2) Search for our reporter under @LizSzabo and start following the account.

3) On Wednesday at 1 p.m. ET, visit Twitter.com and search for #autismchat. Save your search and you will be able to view real-time results of the chat.

4) To join the conversation, tweet your question or comment and include the hashtag #autismchat in your tweet. Make sure the entire question or comment, including hashtag, is 140 characters or less.

5) Refresh your page. You will be able to see your question appear in the conversation.
Want to get your question in early? Tweet @LizSzabo using #autismchat anytime before the chat.

Jenny McCarthy, less brash but the same message

1 May

Jenny McCarthy and her organization, Generation Rescue, have toned down on the vaccine message in the past few years. Gone is the Generation Rescue “favorite” vaccine schedule (which left kids unprotected against most vaccine preventable diseases). It’s been four years since the “Green Our Vaccines” rally, and there isn’t even a discussion of a followup. Mostly, there hasn’t been that much vaccine talk from Ms. McCarthy in the press for the past few years. Autism Awareness month (April) was for three years running the launch date for Jenny McCarthy autism books.

From the article “Jenny McCarthy: ‘I’m Taking Baby Steps’ with New Romance” in Parade:

The biggest hurdle is the CDC not recognizing it as an epidemic. There is no such thing as a genetic epidemic. I know there is an environmental trigger that they won’t agree with right now but time will tell. I am just ready for them to call it an epidemic so people can take it seriously.

“I know there is an environmental trigger that they won’t agree with right now…” Not quite the old days with Jenny McCarthy shouting “Bullshit” at the head of the AAP on the Larry King show. Or telling a crowd at a TACA picnic where Barbara Walters can put her microphone (hint, it wasn’t a polite suggestion). It’s more of a “wink and a nod” now. But does anyone have a doubt as to what the “environmental trigger” Ms. McCarthy is referring to?

Ms. McCarthy is in the news for another topic: botox. In Jenny McCarthy: Botox Helps Maintain Youthful Look, ABC news had a single picture with the caption: Jenny McCarthy isn’t afraid to admit she uses botox to keep her youthful glow. McCarthy told Life & Style magazine that ‘I get Botox in my forehead. I just have my doctor do a little shot.’

Yes. Botox. From Wikipedia: “Botulinum toxin is a protein produced by the bacterium Clostridium botulinum and is the most powerful neurotoxin yet discovered”

Don’t worry. She just gets “a little shot”.

The MA State Senate: Please Stop Painful Electric Shocks on Students at JRC in Massachusetts!

30 Apr

A petition is hosted on Change.org: The MA State Senate: Please Stop Painful Electric Shocks on Students at JRC in Massachusetts! The Judge Rotenberg Center uses electric shocks as part of their program for some of the students in their care. The JRC is not allowed to use these aversives on new students, but still continues with students whose programs included them before the order (see Left Brain/Right Brain story: Judge Rotenberg Center banned from shocking new admissions)

The Change.org petition was created by a former JRC employee.

Hi, my name is Gregory Miller. I used to work at a school in Massachusetts named The Judge Rotenberg Center (JRC) where we used powerfully painful electric shock devices (45 – 91 milliamps, at 66 volts) on students to control their behaviors. These devices are much stronger than police stun guns (1-4 milliamps). Unlike stun guns, the electrodes most commonly used at school are spaced 3 – 4 inches apart so that the electrical volts passing through the flesh create the maximum amount of pain with those amps and volts. The United Nations is aware of JRC, has called these shocks at JRC “torture”, and says that “The prohibition of torture is absolute.” Please see the attached video of a student named Andre getting shocked at JRC, covered by Fox News.

Historically, the JRC has been very careful about what information is allowed to be seen by outsiders. Case in point, the video included in the court case which is reported in the video Mr. Miller references (and embedded below). The JRC fought to keep that video from being used in court (see Left Brain/Right Brain story Judge Rotenberg Center: Teen tied and shocked for hours; mom calls it “torture”).

Here is the news video mentioned above. Be forwarned: it is painful to watch. Nothing like what Andre McCollins had to go through.

Mr. McCollins was strapped down, face down, and repeatedly shocked while screaming repeatedly “no” and “help me”.

You can hear the attorney say, “that was shock number 16 or 17, out of 31 that day”. You can see the JRC attorney explaining that “the treatment plan was followed”. Is that really justification for what went on? Not for me. At about 2:10 into the video, you can see him shocked again while at a workstation. The shocks have been called equivalent to a bee sting by JRC personnel. That doesn’t seem like an accurate description to what happened to Mr. mcCollins.

Pharmacologic Treatment of Repetitive Behaviors in Autism Spectrum Disorders: Evidence of Publication Bias.

27 Apr

I had hoped to read this article and have a good review in place when the embargo lifted. Time is working against me and I just haven’t had the resources to apply to this. But I shouldn’t let that stop me from highlighting this study: Pharmacologic Treatment of Repetitive Behaviors in Autism Spectrum Disorders: Evidence of Publication Bias. The full paper is available free on the Pediatrics website.

Selective serotonin reuptake inhibitors (SSRIs) are a class of drugs used most often to treat depression. They are also used off-label for treating anxiety and, also, autism symptoms. A study carried out in 2009 showed that one drug frequently prescribed to autistics, Citalopram, was no different than placebo in reducing repetitive behaviors (Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior: citalopram ineffective in children with autism.) The study results came as a bit of a surprise to many and was a minor news story for that week.

Publication bias “is the tendency of researchers, editors, and pharmaceutical companies to handle the reporting of experimental results that are positive (i.e. showing a significant finding) differently from results that are negative (i.e. supporting the null hypothesis) or inconclusive, leading to bias in the overall published literature.”

A recent study looked at previous publications (and one unpublished study) and claims that there is publication bias involved in reporting on SSRI’s and repetitive behaviors in autism:

OBJECTIVE:
The goal of this study was to examine the efficacy of serotonin receptor inhibitors (SRIs) for the treatment of repetitive behaviors in autism spectrum disorders (ASD).
METHODS:
Two reviewers searched PubMed and Clinicaltrials.gov for randomized, double-blind, placebo-controlled trials evaluating the efficacy of SRIs for repetitive behaviors in ASD. Our primary outcome was mean improvement in ratings scales of repetitive behavior. Publication bias was assessed by using a funnel plot, the Egger’s test, and a meta-regression of sample size and effect size.
RESULTS:
Our search identified 5 published and 5 unpublished but completed trials eligible for meta-analysis. Meta-analysis of 5 published and 1 unpublished trial (which provided data) demonstrated a small but significant effect of SRI for the treatment of repetitive behaviors in ASD (standardized mean difference: 0.22 [95% confidence interval: 0.07-0.37], z score = 2.87, P < .005). There was significant evidence of publication bias in all analyses. When Duval and Tweedie's trim and fill method was used to adjust for the effect of publication bias, there was no longer a significant benefit of SRI for the treatment of repetitive behaviors in ASD (standardized mean difference: 0.12 [95% confidence interval: -0.02 to 0.27]). Secondary analyses demonstrated no significant effect of type of medication, patient age, method of analysis, trial design, or trial duration on reported SRI efficacy.
CONCLUSIONS:
Meta-analysis of the published literature suggests a small but significant effect of SRI in the treatment of repetitive behaviors in ASD. This effect may be attributable to selective publication of trial results. Without timely, transparent, and complete disclosure of trial results, it remains difficult to determine the efficacy of available medications.

Autism Science Foundation to host online chat with Jill Locke tomorrow (Friday)

26 Apr

Jill Locke is a researcher (a post-doc) at the Center for Autism Research at the U. Pennsylvania. Here is her biography from the CAR website:

Dr. Locke is a post-doctoral research fellow at the Center for Autism Research. She completed her doctorate degree in Educational Psychology at the University of California, Los Angeles. Jill worked with Dr. Connie Kasari at the UCLA Center for Autism Research and Treatment where she contributed to multiple randomized controlled treatment trials that examined the effects of targeted social skills interventions on the peer relationships and social networks of elementary-aged children with autism in the Los Angeles public schools. She created a social skills assessment tool using the Q-Sort methodology for her dissertation that investigated the differences in teachers’ and classroom aides’ perceptions of social competence in children with and without autism spectrum disorders as well as how these perceptions related to teacher-student and peer relationships.

Jill’s research interests are in social skills training and friendship/relationship development in children and adolescents with autism. She is also interested in exploring the ways in which treatment gains in intervention programs are generalized and sustained over time as well as the delivery to and sustainability of evidence-based practices in community settings.

She will be participating in a live chat on the Autism Science Foundation’s Facebook page tomorrow (Friday, April 27) at 12 noon Eastern time.

If you want an idea of what these online chats look like, transcripts are online for last week’s chat with Stephen Shore, Marcus Center Autism Research Dr. Celine Saulnier, and Yale Autism Scientist Dr. Kevin Pelphrey.

Todd W., running for a good cause

26 Apr

Todd W. of Harpocrates Speaks is a frequent author of articles and commenter in online discussions involving questions of vaccines and vaccines and autism.

In his article, Help Me, Interwebz! You’re My Only Hope!, he tells us that he is participating in a run to raise money for medical research. In specific, he’s helping to raise money for a new type of vaccine adjuvant:

The VIC is researching the use of a laser as a vaccine adjuvant. Basically, adjuvants allow vaccines to use fewer antigens by increasing the body’s immune response. In the U.S., we use aluminum salts (e.g., aluminum hydroxide, aluminum phosphate, and aluminum potassium sulfate) as adjuvants. Because there are some individuals who question the safety of these adjuvants (largely based on false information), the laser adjuvant may induce a similar boosted immune response without the concerns associated with aluminum. It also has the potential to reduce even the current minor side effects associated with aluminum adjuvants, like local soreness and swelling. The VIC researchers have completed animal studies and are ready to move on to human trials. Although the initial research focuses on influenza and hepatitis B vaccines, there is potential for this technology to be applied to a much wider range of vaccines. In the end, this could hopefully make for more effective and safer vaccines, as well as improve overall immunization rates among those worried about ingredients like aluminum.

Todd W. has details on how to contribute in his article, but if you want the short version:

You can be a part of this innovative research by supporting my flight through the zombie-infested wilderness of Amesbury by going to this page and making a donation. If you would rather make a gift by mail, make your check payable to:

Massachusetts General Hospital
Development Office
165 Cambridge Street, Suite 600
Boston, MA 02114

Make sure to put “Todd’s Zombie Run” in the memo line or in a note with your donation. All gifts will go to support these two projects and are 100% tax deductible.