Archive | March, 2010

NIH to study recovered autistics

10 Mar

A clinical trial has been started to study and compare autistics (children to young adults) who have “remitted” autism. These are people who would be called “recovered” by the autism parent community.

The trial can be found on clinicaltrials.gov The purpose of the trial is given as:

Autism is defined as a lifelong pervasive developmental disability, as such, symptom recovery is considered rare. Reports by Lovaas and McEachin, Smith & Lovaas and more recently by Cohen, Amerine-Dickens, & Smith, Smith Groen et al. and Sutera Pandey et al suggest that intensive behavioral intervention programs during preschool years may result in improvement to the point where some children no longer meet criteria for autism by the time they reach school age. Similarly, there are a large number of anecdotal reports of children with autism who, following intensive biomedical intervention (e.g., gluten/casein free diets, vitamin supplements, chelation), are indistinguishable from their typically developing peers. The goal of the current research is to characterize the behavioral and biological profiles of children with autism who show significant symptom reduction such that they no longer meet criteria for autism (Remitted Autism [REM-AUT]) and to contrast them with a group of children who continue to meet criteria for autism (AUT) and to typically developing (TD) group of children. Examining whether neurobiological and neurobehavioral symptoms commonly reported in autism are as frequent and severe in children who have responded to treatment is an important first step in determining what factors may contribute to symptom remission in autism. In addition, understanding how children with remitted autism compare to typically developing children will help us better understand whether symptom improvement is through remediation (normalization of function) or compensation (achieving the same behavioral/adaptive outcome but through an alternative process)

Three groups will be compared: “remitted autism” (REM-AUT), “autism” (AUTISM) and “typically developing” (TD).

The inclusion criteria are given below. As you can imagine, the criteria are extensive for the “remitted” group.

Remitted Autism (REM-AUT) Group:

1. Diagnosis of autism prior to symptom improvement
1. valid administration of ADI and/or ADOS with accompanying interpretive report yielding an autism diagnosis
OR
2. clinical/developmental evaluation including a detailed review of the child’s history and direct observation of current behavioral functioning resulting in a documented diagnosis of autism by a child developmental specialist experienced with autism spectrum disorders such as a developmental pediatrician, developmental psychologist, child clinical psychologist, or a child psychiatrist
3. measure of cognitive ability from within 1 year of initial autism diagnosis
4. objective measure indicative of prominent autism symptoms using a recognized and standardized assessment of autism symptoms such as the Social Responsiveness Scale (SRS), Childhood Autism Rating Scale (CARS), or the Modified Checklist for Autism in Toddlers (MCHAT) or video tapes of assessments
5. initial diagnosis of autism prior to age 6
AND
6. Medical, educational, treatment record review by PDN branch clinicians to confirm diagnostic impressions including a detailed description of child’s behaviors that support an autism diagnosis
7. The final decision for meeting diagnostic and treatment history inclusion criteria is based on PDN branch staff review of the case
8. Treatment history: all participants must have received adequate treatment intervention for their autism symptoms. Participant medical and treatment records will be carefully reviewed to ascertain their treatment history

2. Current functioning:

a. Parent report and report of at least one professional that child is no longer autistic

3. At screening visit (after meeting initial eligibility), will not meet criteria for autism
1. Must not meet criteria for autism per overall clinical impression based on information collected from administration of the ADOS, current ADI-R symptoms, and other clinical observations made the assessment.
2. Teacher/informant report of autism symptoms (such as results from the SRS) not indicative of autism diagnosis
3. Minimum improvement of symptoms required from group assignment: approximately 2 point CGI severity of illness change (or equivalent) based on PDN impression of change in illness severity from initial diagnosis (estimated based on review of past medical records) and current functioning
OR
4. Current assessment of functional impairment due to autism symptoms using a standardized assessment measure such as the Developmental Disability-Children’s Global Assessment Scale will reflect adequate functioning in all areas and/or a clinically significant improvement in functioning, consistent with common psychiatric treatment definitions for treatment response

4. Able to participate in study procedures.

AUTISM Group:

1. Diagnosis of autism following the same criteria as described above
2. Treatment history: all study participants must have received adequate treatment intervention. Treatment history will be matched to treatment provided to children in the REM-AUT group.
3. Screening visit (after meeting initial eligibility): will meet criteria for autistic disorder using the same diagnostic process described for the REM-AUT group above
4. Matched to REM-AUT group on IQ, age of diagnosis, and treatment history. IQ matching between the AUT and REM-AUT groups will be based on pretreatment estimates of cognitive level obtained from the medical record review.
5. Able to participate in study procedures.

TD Group:

1. IQ matched to a sub-sample of children in the REM-AUT group with normal range intellectual functioning. IQ matching between the TD and REM-AUT groups will be based on current intellectual functioning at the time of study participation.
2. Able to participate in study procedures.

EXCLUSION CRITERIA:

All groups: May not be pregnant or have a known genetic disorder, mitochondrial disease, history of birth trauma, or current uncontrolled seizures

TD Group:

1. Current diagnosis or significant history of pervasive developmental disorder, language delay or disorder (except articulation), attention or learning issues, or major psychiatric condition.
2. Prematurity at birth less than 36 weeks gestation); or birth weight significantly below normal for gestational age (SGA- small for gestational age).

This is a study that should be done, in my opinion. I will note that this study has supposedly been one of the key pieces being sought by multiple parent groups. I will further note that I have not seen any of them mention this study. Quite the opposite, in fact. I see comments occasionally on blogs about how their frustration that such a study is not being performed. Perhaps I missed it, but I am curious why their leadership doesn’t make a big deal out of this.

An open letter to Jenny McCarthy

9 Mar

Dear Jenny McCarthy,

You start a recent HuffPo post by stating:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

I simply don’t believe you. Let me explain why.

Firstly and least importantly is your track record as a celebrity parent. You used to claim that you were an indigo mum and your son a crystal child. Indeed you used to participate heavily in the online Indigo community but most of those web pages have disappeared from the web over the last few years. Who’s afraid of the truth there Ms McCarthy? Were you worried those beliefs were just _too_ kooky?

Secondly and much more importantly is your track record as a health advocate. You and your boyfriend have lied about the makeup of vaccines, claiming that they contain antifreeze for example, in order to scaremonger.

Regarding these hundreds of recovered children I have one simple question…where are they? According to Generation Rescue there should be hundreds of recovered children (someone from GR once claimed thousands) and yet I have never seen one – and that includes your own child Ms McCarthy. Your own child that has a very strong doubt over his own autism diagnosis.

It’s easy Ms McCarthy, all you have to do is get onoe of these hundreds of children and do a proper science led case study on them. Have it published in a decent journal and then the scientific community will listen to you. The leadership of GR have known this for _years_ – why has it never been done?

How do you establish that these hundreds of autistic children have not recovered via non biomed means? Helt et al report that autistic children have a recovery rate of between 3 and 25%. And guess what, when I asked her, Helt told me:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

…

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

You go on to say:

Corner one of the hundreds of doctors who specialize in autism recovery, and they’ll tell you stories of dozens of kids in their practice who no longer have autism. Ask them to speak to the press and they’ll run for the door.

I bet they will. They have no answers to the serious scientific issues surrounding autism and instead peddle items like foot detox or urine injection therapy.

You then say:

Who’s afraid of autism recovery? Perhaps it’s the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition.

I donlt think anyone is _afraid_ of autism recovery Ms McCarthy but I’ll tell you what some of us _are_ afraid of and thats someone with a big mouth and not a lot of science behind her relating horror stories about vaccines and singing the praises of doctors who have no idea what they’re doing.

You then ask about the MMR, which I believe you blamed for your sons autism:

Even with the MMR, studies only compare kids who have otherwise been fully vaccinated. Is that really an honest way to evaluate the issue?

You are wrong Ms McCarthy, clinical studies have looked at the MMR belief and found it wanting. During the Autism Omnibus, Stephen Bustin spent over 1500 hours looking at the only work that alleged an MMR connection autism and found it seriously wanting. Get someone who knows about science to explain it to you.

You say:

How do you say vaccines don’t injure kids, when a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children?

I say: _who_ says that? I don’t know anyone who claims vaccines are 100% safe. You’re creating a strawman of enormous proportions to deflect from the reality of your crackpot ideas about autism. Like _all_ medical proceedures, vaccination carries some risk. Nobody claims they don’t.

You then say:

In the recent case of Dr. Andrew Wakefield, why did the press constantly report that his 1998 study said the MMR caused autism when anyone could read the study and know that it didn’t?

Quite possibly because during a press conference given _about_ the paper in question Andrew Wakefield needlessly made claims that linked MMR to autism causation.

…the work certainly raises a question mark over MMR vaccine, but it is, there is no proven link as such and we are seeking to establish whether there is a genuine causal association between the MMR and this syndrome or not. It is our suspicion that there may well be…

is just one amongst many.

Ms McCarthy I find it deeply amusing that directly underneath your closing line:

Who’s afraid of the truth? Usually the people it would hurt the most.

is a lovely graphical link to all of your turgid books. It seems to this autism parent that you have as much to lose in terms of finance as well as credibility as those you name.

The absolute truth is that you don’t understand the science Ms McCarthy. You have well and truly missed the boat on the MMR vaccine, you have no science that establishes any aspect of autism to any aspect of vaccination. All you have is a big mouth and lots of money to spend getting it out there in front of people. I absolutely assure you, you do not speak for the autism community. You speak for the anti-vaccine community and them alone.

Lawsuit against alternative medical practitioners Usman and Rossignal

5 Mar

A lawsuit has been filed in Chicago claiming that a child has been harmed by the treatments prescribed by Dr. Dan Rossignol and Dr. Anju Usman.

This is being reported in a story, Father of 7-year-old autistic boy says treatment harmed son. (also now on the Chicago Tribune’s website)

Doctor’s Data has also been named:

Coman also alleged that Doctor’s Data Inc., the St. Charles laboratory that performed the tests Usman and Rossignol used to justify these treatments, was negligent for using an “improper method” of testing.

We here at LeftBrainRightBrain have commented many times about the concept of “challenge” testing to “prove” heavy metal toxicity.

The suit spotlights a test often used to diagnose metal poisoning in children with autism. To conduct the test, doctors give children a chelation drug that forces the body to let go of some of the metals that exist in everyone – healthy or sick – in trace amounts. Those metals show up in urine, which is sent to a lab for screening.

In the case of Coman’s son, Doctor’s Data then compared those drug-provoked results to a reference range calculated for people who had never been given a chelation drug. Based on this apples-to-oranges comparison, Coman’s son was found to have elevated levels of lead, aluminum, tin and mercury – some with results Doctor’s Data listed in the “90% range of metal contamination,” according to the lawsuit.

According to the story, there are no comments from Doctor’s Data, Dr. Rossignol’s office nor Dr. Usman’s office.

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

5 Mar

There is a bill in congress to ban seclusion and restraints in schools. It has been passed by the House (as bill 4247)and will go on to the Senate and, hopefully, the President. Below is a press release from the Autistic Self Advocacy Network (ASAN).

    Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities, said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion, said Durbin-Westby. We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion.”

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

My congressperson voted yes.

I note that Dan Burton, congressman from Illinois and vaccine critic, voted against the bill. Mr. Burton has been called “one of the foremost champions of autistic causes in Congress.” I find this nay vote very troubling. On the other hand, Congresswoman Maloney, also a vaccine critic, voted yea. The vote was very much a democrat vs. republican divide, which may explain the two congresspeople above.

Vaccines Don’t Cause Autism

4 Mar

That’s the title of an article at Smithsonian.com. The introduction spells out one of the dilemmas that face skeptics to the “vaccines cause autism” story:

It’s rare in science and science writing to make definitive statements, particularly about causation. We like to add what I call “wishy washy” words like “may” and “probably” and “perhaps.”

It’s the “you can’t prove a negative” thing. Can someone say that in all of history, for every person, vaccines have not caused autism through some mechanism not yet described? No. But, is there “overwhelming evidence”?

So when scientists or science writers make definitive statements like “vaccines don’t cause autism” and “vaccines save lives,” it’s because we have overwhelming evidence to back it up.

I expect that soon the author, Sarah Zielinski, will see what happens to blogs that dare make such bold statements. Links to the embarrassingly bad “fourteen studies” website will be posted. Comments that “only one vaccine and one ingredient” will be trotted out by people who lack the courage to acknowledge that the studies clear that vaccine (MMR) and that ingredient (thimerosal). “Too many too soon” will be spouted as though this is some real hypothesis rather than a mere slogan.

Ms. Zielinski finishes with:

Vaccines work. They don’t cause autism. Now, perhaps, scientists can spend their resources on figuring out what does instead of wasting them on a debunked theory.

And that is where the frustration comes in. Groups like SafeMinds and Generation Rescue, while they claim to be interested in environmental causes of autism, really only care about vaccines.

Sorry for yet another vaccine story, but it is nice to see people coming down with hard, clear statements. Real people use strong language all the time. Those pushing the vaccine-causation story use language that is completely unsupported by the facts.

Sometime scientists need to speak like regular people, as Sarah Zielinski has just done.

UK Advertising Standards Authority Rules on Options Institute

3 Mar

The Kaufmans ran an Ad in the regional press over here which read:

AUTISM RECOVERY 2 Hours to change your child’s life With American Autism expert Raun K. Kaufman, himself fully recovered from Autism. Free Public Lectures

ASA recieved 2 complaints on the adverts (no, neither were me) and investigated based on the following:

1. Two readers believed the ad was misleading because it implied that autism was a temporary condition, which was curable.

2. One of the readers also believed the ad was misleading because it implied The Autism Treatment Center of America’s programme would be effective within two hours.

3. The ASA challenged whether the testimonials were genuine.

Points 2 and 3 were not upheld which meant ASA were satisfied that point 2 referred to the length of time the lectures went on for and that the testimonials in point 3 were genuine.

However, point 1 was upheld:

The ASA noted the ad referred to “AUTISM RECOVERY” and considered that the word recovery was likely to be understood by readers to mean that OIF were offering a treatment or “cure” for autism. We also noted OIF’s acknowledgment that results of the programme varied.

We noted we had not seen full copies of the three earlier studies on The Son-Rise Program to which OIF had referred. However, we understood from the summaries provided that none of those studies assessed whether the programme could cure Autism. We noted the discussion paper described how the principles of The Son-Rise Program were compatible with a more general understanding of autism and autistic behaviour, established through research carried out over the last 50 years. We also noted, however, that that paper did not assess the efficacy of The Son-Rise Program itself, but suggested that further independent research into the programme was needed. We therefore considered that the studies and discussion paper were not sufficient to support the efficacy claim made for The Son-Rise Program.

We noted two studies were currently being conducted on The Son-Rise Program, but considered that, whatever the initial observations might be, because the results of the studies were as yet unknown, unpublished research did not substantiate the claim. Because we had not seen robust scientific evidence to support the claim of recovery from autism, we concluded that the ad was misleading.

On this point, the ad breached CAP Code clauses 3.1 (Substantiation), 7.1 (Truthfulness) and 50.1 (Health and beauty products and therapies – general).

New national autism strategy launched in UK

3 Mar

Download:

1) Equality Impact Assessment

2) Fulfilling and rewarding lives – The full strategy

Its a fairly momentous day for autism in the UK. The gvmt has finally launched its national autism strategy and placed adults at the heart of it. The first step:

…the Department of Health is funding a study to explore rates of autism in a representative samples of adults in England and build on the small-scale study which began in 2008 to help identify a suitable way for improving the accuracy of estimating prevalence in the adult population.

I think this is a commendable first step. Accurately estimating prevalence is vital to any strategy. It should also be noted that the strategy is ensuring adults across the entire spectrum are included:

In addition, the Department of Health, as set out in Valuing People Now (2009), is committed to establishing a new three-year Public Health Observatory (PHO) in relation to people with learning disabilities. The work of this new PHO will include the collation of existing data on the prevalence of people with autism who also have a learning disability, what services they access, and the quality of those services.

The best place to get a grasp on the entire strategy is with the Executive Summary starting on page 6. The first point reads:

The Government’s vision is that ‘All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream
public services to treat them fairly as individuals, helping them make the most of their talents.

I tend to be skeptical of government strategies but I very much like how this one came about (autistic adults were included as part of the consultation) and the goals it sets out – i.e. recognising that autism is a lifelong thing and trying to set out how to make things better for adults with autism. I hope its successful.

One reason why I vaccinate

3 Mar

I know this isn’t at all autism related, but this story just keeps bugging me.

South Bend couple loses baby to pertussis

The story is heartbreaking. A couple has fertility problems and tries for years to have a baby.

But the couple’s desire to have children soon turned to heartache as Katie suffered miscarriage after miscarriage.

“We started to think that it would never happen,” Craig said during a recent interview at the family’s home.Katie later went to see a specialist in Chicago and was diagnosed with a rare blood clot disorder that doctors said was affecting her ability to carry a baby to full term. She was prescribed medication.

Finally, after five years, Katie became pregnant with a baby girl that far surpassed previous pregnancy terms.

They finally have a baby, only to lose her at one month from pertussis.

Days later, pertussis tests came back positive.The diagnosis blindsided the family. How could Callie have contracted the illness? She had been far too young to yet be immunized against the bacterial infection. Series of shots against pertussis do not begin until infants are 2 months old.

The couple had also kept outside family and friends away while Callie was home in an effort to protect her from sickness. She had been home from the hospital only 2 1/2 weeks.

St. Joseph County coroner Dr. Michael O’Connell confirmed to The Tribune that Callie likely died of an infectious-type illness such as pertussis, but he said conclusive tests will not be complete for several more weeks.

These sorts of stories are very difficult to discuss. This family is going through pain beyond anything in my experience and I certainly don’t want to add to that. But this story is a real example of one reason I vaccinate myself and my family. I can’t imagine thinking that I or one of my family had passed on an infectious disease to a family with an infant or someone else vulnerable.

DSM V and Rett Syndrome

2 Mar

Sullivan recently posted about the proposed changes to the DSM V that would include dropping Aspergers and PDD-NOS. However, whats not so widely realised is that the changes also encompass Rett Syndrome, proposing dropping it entirely.

Rett was originally included in the DSM because it was a disorder with autistic features of an unknown cause. Now that the genetic cause has been identified, the rationale for removing Rett is that it is more its own distinct entity. Another reason pertains to the transient nature of autism features in Rett patients.

However, this may be a very short sighted move. RSRT scientific advisory board member and Rett Syndrome researcher Huda Zoghbi , M.D. discussed the reasons for this on the Rett blog:

I actually do not agree with this approach. I think the approach should be to see what clinically fulfills criteria for autism. I would be in favor of a more precise categorization and dividing DSM V into two types: DSM V A and B. One would be used for syndromic autism and one would be non-syndromic autism. There would be genetic etiologies for both syndromic and non-syndromic. Currently most of the known genetic causes are for syndromic autism but in time, as we do more sophisticated sequencing and we study patients with simplex autism (one case in a family, with no features other than classic autism) we will find etiologies for non-syndromic as well. In my view this would be a much more useful distinction. Bottom-line: having a known genetic cause should not eliminate a disorder from DSM V.

Whats not widely known about Rett is that not all females with a diagnosis of Rett have an identified mutation. Conversely there are females with MECP2 mutations who do not have Rett Syndrome symptoms. Removing Rett from the DSM V seems to be cutting these females off from autism entirely.

The DSM V could be a huge clinical step forward but not at the expense of cutting off people from the support and services they need.

Parental Vaccine Safety Concerns in 2009

1 Mar

A paper in today’s issue of pediatrics looks at vaccine safety concerns amongst parents. The paper

Parental Vaccine Safety Concerns in 2009
by
Gary L. Freed, Sarah J. Clark, Amy T. Butchart, Dianne C. Singer, and Matthew M. Davis. All of the University of Michigan.

the abstract states:

OBJECTIVE: Vaccine safety concerns can diminish parents’ willingness to vaccinate their children. The objective of this study was to characterize the current prevalence of parental vaccine refusal and specific vaccine safety concerns and to determine whether such concerns were more common in specific population groups.

METHODS: In January 2009, as part of a larger study of parents and nonparents, 2521 online surveys were sent to a nationally representative sample of parents of children who were aged ?17 years. The main outcome measures were parental opinions on vaccine safety and whether the parent had ever refused a vaccine that a doctor recommended for his or her child.

RESULTS: The response rate was 62%. Most parents agreed that vaccines protect their child(ren) from diseases; however, more than half of the respondents also expressed concerns regarding serious adverse effects. Overall, 11.5% of the parents had refused at least 1 recommended vaccine. Women were more likely to be concerned about serious adverse effects, to believe that some vaccines cause autism, and to have ever refused a vaccine for their child(ren). Hispanic parents were more likely than white or black parents to report that they generally follow their doctor’s recommendations about vaccines for their children and less likely to have ever refused a vaccine. Hispanic parents were also more likely to be concerned about serious adverse effects of vaccines and to believe that some vaccines cause autism.

CONCLUSIONS: Although parents overwhelmingly share the belief that vaccines are a good way to protect their children from disease, these same parents express concerns regarding the potential adverse effects and especially seem to question the safety of newer vaccines. Although information is available to address many vaccine safety concerns, such information is not reaching many parents in an effective or convincing manner. Pediatrics 2010;125:654–659

The study was a survey of households with children. They contacted extra Hispanic and African-American households to get better statistics on those groups. But they normalized the data to account for this “oversampling”.

Table 3 shows that 11.5% of parents have rejected at least one recommended vaccine. Most listed the HPV (human papillomavirus) as the rejected vaccine. HPV is new, and is given to teenage girls to prevent a viral infection known to be a cause of cervical cancer. (click to enlarge)

Parental Vaccine Refusal

Table 4 shows parental attitudes for a number of vaccines. Reasons for rejecting vaccines vary from “I would rather my child got this disease” to “I personally know someone who experienced a harmful adverse event”. (click to enlarge)

Parent experiences and attitudes on childhood vaccines

The survey explored the views of parents on the autism/vaccine question:

One current specific immunization safety concern has been the spurious association of vaccines with autism. Although peer-reviewed original scientific research and multiple expert committees that have reviewed all available data on this issue have failed to show any association between vaccines and autism, anecdotally the concern continues to affect parents. Our study indicates that a disturbingly high proportion of parents, >1 in 5, continue to believe that some vaccines cause autism in otherwise healthy children. This finding indicates that current public health education campaigns on this issue have not been effective in allaying the concerns of many parents. Officials must attempt to develop more effective and targeted education campaigns that focus directly on this issue if their goal is to match parents’ level of concern with the available scientific evidence. Recently, the use of newer social marketing techniques have been suggested as potential strategies to address vaccine safety concerns.

>1 in 5 believe the “vaccines cause autism” story. Amazing. I’m sure that will be seen as a both a victory and a challenge to the groups pushing that message.

I hate to say it, but someone needs to. This study may be the most valuable study the trial lawyers working on autism/vaccine cases have seen. Much more so than the bad science of the Geiers or the speculation in Medical Hypotheses. Where this will be valuable will be in helping select a jury that is as sympathetic to their cause as possible.

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