This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Thursday, September 23, 2010

The Federal Vaccine Injury Compensation Program Has Awarded Damages for Autism Caused by Vaccines

When the VICP awarded compensation to the family of Hannah Poling, conceding the point that vaccines had caused her "autistic-like" symptoms, the story was picked up by the news and many people heard about it.  What many people did not hear is that it was not the first case, nor has it been the last, in which the VICP has awarded damages for autism being caused by vaccines.  Her case got more attention for several reasons, one of which is that her parents were in a particularity good position to follow up on what happened to her and to get her story out there- her mother is an attorney and her father is a neurologist.  Autism can happen to anyone, and sometimes it happens in families that are in a good position to bring more attention to it.  The fact that her father is a neurologist is part of why she was awarded compensation- he knew what testing she needed to document what happened to her, most families do not have that advantage, and are at the mercy of pediatricians and ER doctors to know this and to take the lead, which they rarely do.  Hannah Poling's case was originally going to be used as one of the test cases in the Autism Omnibus Proceedings (A sort of "class action" suit in federal Vaccine Court), before it was decided that her case would stand alone.  Despite the claims that her case is unique because of the connection with mitochondrial disease, it was a challenge to find another test case to replace hers in the OAP that did NOT involve mitochondrial disease or dysfunction, as this is actually very common among people with autism.

Vaccine Case: An Exception or a Precedent?  CBS News report about the Hannah Poling case
Case Study: Autism and Vaccines a TIME Magazine Report

The Case of Bailey Banks

Another case was announced in 2009, that of a child named Bailey Banks (the case had actually been won in 2007). The official ruling can be viewed here.  The basics of the case are explained in this article from TIME magazine.   To quote from the article:

"In the case, the parents of Bailey Banks, now 10, argued that their son had a seizure 16 days after his first MMR, in 2000. That, they said, led to Acute Disseminated Encephalomyelitis (ADEM), a rare neurological disease, which in turn led to PDD.

The first question for the court, then, was whether Bailey had Acute Disseminated Encephalomyelitis, and its answer was yes, based on medical records. It then addressed the question of whether the MMR vaccine can cause ADEM, and here there was precedent: Two previous vaccine cases, in 1994 and 2001, had led to decisions that ADEM can be caused by natural measles, mumps, and rubella infections, as well as by measles, mumps, and rubella vaccines. In Bailey’s case, the court ruled, the MMR had indeed caused his Acute Disseminated Encephalomyelitis."

As the court said in its decision,, that “Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD. Additionally, this chain of causation was not too remote, but was rather a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.”

Of the reports in the media about this case, two main questions were used to cast doubt on the relevance of this case to the question of whether vaccines can cause autism.  One is questioning whether the MMR can in fact cause ADEM, and the other being whether PDD-NOS is autism or not.  On page 7 of the package insert for the MMR vaccine, ADEM is listed as one of the known adverse reactions.  The website for the National Institute of Neurological Disorders and Stroke has more information about ADEM, what it is and what causes it, including this "ADEM often follows viral or bacterial infections, or less often, vaccination for measles, mumps, or rubella.".  

The idea that PDD-NOS is not autism is ridiculous in itself and makes no sense if you are familiar with Autism Spectrum.  Autism (sometimes called Classical Autism or Full-Criteria Autism) is one of the disorders that falls under the umbrella of the Pervasive Developmental Disorders, a spectrum of disorders that also includes PDD-NOS, which stands for Pervasive Developmental Disorder- Not Otherwise Specified.  PPD-NOS and Asperger's Syndrome are considered forms of Autism Spectrum Disorder.  Honestly, the semantics of  "the spectrum" are a nightmare, and do cause a lot of confusion.  Recently, the DSM-5 lumped Asperger's Syndrome in with Autism rather than having it be it's own diagnosis.  This confusion comes from ongoing attempts to make sense of something that is poorly understood, nothing more.  From the CDC's page on Autism Spectrum Disorder "A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder." 

More on ADEM can be found in these studies:

More on Bailey Banks' case can found in these articles:

Vaccines – Litigation: Child with PDD-NOS (Autism Spectrum Disorder) Compensated for Damage from the MMR Vaccine  (from the TACA website)
This article from the Huffington Post discusses some of the politics of the vaccine court and the outcome of this ruling.
And this article from the site Age of Autism includes some of the details of the case, including medical details and testimony from expert witnesses.
Another Autism Case Wins In Vaccine Court

The Case of Elias Tembenis

Harry and Gina Tembenis, Elias' parents, originally filed in Federal Vaccine Court for compensation for their son Elias' autism and seizure disorder, which was caused by his DTaP vaccine, as part of the Omnibus Autism Proceedings. Like many families, they withdrew his case from the OAP to have it decided on it's own.  While they did win their case, and the family is being awarded compensation, it is not much of a victory as Elias died of his injuries at the age of 7 before the case was settled.  This report by CBS News called "The Search For Safer Vaccines" gives more information about his case and it's significance.  The ruling can be viewed here.

Julia's Case

Julia's case was conceded by the government, which means that when they (DHHS) took a look at her case they "settled out of court", conceding that the her brain injury was caused by the MMR, and awarded her family compensation.  DHHS (The Department of Health and Human Services) is the "defendant" in vaccine court and can choose to settle rather than have the case heard in vaccine court. These cases are then sealed (even when the families want the cases to be public record). To read more about Julia's story, and her mom's experience of filing in VICP, you can see her mom's blog here.  Julia did not have an autism diagnosis at the time of the proceedings in Vaccne Court, partly because her mother felt (as do many parents who file in Vaccine Court) that their case is is more likely to be won if they do not bring the word "autism" into it.  Julia was diagnosed with PDD-NOS after the proceedings. 

A quote from her mom about the diagnosis:

“Anyway, I'm having mixed feelings about it. Glad for the extra opportunities for her, but more aggravated than ever with those who say vaccines don't cause Autism. When I get her case report from the Vaccine Injury Compensation Program - anyone interested is welcome to read it. Vaccines do cause brain injuries which lead to autism - all I have to say. I have living proof.”

83 Canaries

In 2011 the paper "Unanswered Questions From The Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury" appeared in the Pace Environmental Law Review (the full text of the paper can be downloaded from that link).  You can watch a press conference that was held when this paper was released here.  Some of the findings of the paper are discussed in more detail, and a number of families tell their own stories.  After the ruling in favor of Hannah Poling, in which it was claimed that her case was the first and only one in which a child had been awarded damages for vaccines having caused autism, some researchers began to look around to see if this was actually true.  It was found that there were over 1300 cases in which children had been awarded damages by the VICP for neurological damage caused by vaccines.  Many of these cases were sealed, so they were only able to follow up on fewer than 200 of these 1300 cases.  They found 83 cases in which the compensated child had autism, which is 40% of the cases that they were able to consider.  Even if this were all the cases among the 1300, it results in a rate of autism 3 times higher than that of the general population.

More on this paper and it's findings can be found in this news article "Investigators Find Clear Vaccine-Autism Link Based on Government Data":

"The Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) held a press conference in front of the U.S. Court of Federal Claims to release a study linking vaccine injury to autism. For over 20 years, the federal government has denied a vaccine-autism link, while at the same time its Vaccine Injury Compensation Program has been awarding damages for vaccine injury to children with brain damage, seizures and autism.

The government has asserted that it "does not track" autism among the vaccine-injured. Based on this preliminary investigation, the evidence suggests that autism is at least three times more prevalent among vaccine-injured children than among children in the general population.

The study found 83 cases of acknowledged brain damage from vaccines that include autism, a disorder that affects social interaction, language and behavior. Using publicly available information, the investigation shows that the program has been compensating cases of vaccine-induced brain damage associated with autism for more than twenty years. This investigation suggests that officials at HHS, the Department of Justice and the Court of Federal Claims may have been aware of this association but failed to disclose it."

83 Canaries
Video of Congressional Briefing on the Vaccine Injury Compensation Program
Vaccine Court Awards Millions to Two Children with Autism (these cases appear to have been decided after the investigation published in PACE Law Review).
Vaccines, Autism and Brain Damage: What's in a Name? (CBS report)
Learning From a Previous Autism-Vaccine Case?
Vaccine Watch: A Third Vaccine Court Case (CBS report)
This video explains in detail how "Vaccine Court" works, which is not actually a court at all and does not include the legal protections that American citizens normally have in actual court
CDC Failing to Investigate Vaccine Injuries