For the first time ever, I’m more hopeful that Autism Speaks may be headed in the right direction. I don’t care too much for their advocacy. Yes, they have absolutely increased the awareness of autism. Yes, they have raised a war chest of funds to support autism research. Yes, they have positioned themselves as committed to the science of autism above all else. These are all good things.
But, I also feel Autism Speaks has really, really let down our kids. They turn a blind eye to stories of recovery, and I still don’t understand why. The have wasted boatloads of money on useless genetic research. And, when it comes to the dreaded “V” word – vaccines – Autism Speaks appears to behave more politically than scientifically. They seem to toe the line, never warning parents of vaccine risks, while trying hard not to alienate our community too much. Are they worried about alienating their donors? Damn straight.
I want Autism Speaks to be a great organization. I want them to end this senseless epidemic. I truly believe that Autism Speaks and the AAP are the only two organizations that can put an end to the autism epidemic, and the AAP is hopelessly devoted to vaccines.
Journalists and our opposition work very hard to portray the vaccine vs. autism debate as one that pits “Science” versus “Parents.” They pretend this debate is over and they want to ridicule our side and make it look like we are all flat-earthers. It’s why a letter like the one below is so refreshing. The next time a journalist, friend, or relative annoys you with their ignorance, just send them this link – the letter is filled with a remarkable number of nuggets, insights, and truths. All written by a PhD scientist, not a parent.
To make life easier for AoA readers, I have also included my Top 17 list of quotes from Autism Speaks’ letter to the Department of Health and Human Services National Vaccine Advisory Committee (NVAC). (It perhaps goes without saying that nearly one year after Dr. Dawson wrote this letter, our government has done nothing to address any of the great ideas included here):
Top 17 quotes from Autism Speaks’ Letter to the NVAC
1. “In the past several years, the prevalence of ASD has increased dramatically, underscoring the potential role of environmental factors in its etiology.”
2. “Recent studies point to a key role of the immune system in the biology of ASD, raising questions about the effects of the significant immune challenges associated with vaccinations, particularly when delivered in combination and early in life.”
3. “We believe that the question of whether immunization is associated with an increased risk for ASD is of extremely high priority.”
4. “Still other studies point toward subgroups of children with ASD with genetic vulnerabilities than can amplify the adverse effects of environmental exposures, including vaccinations, on brain development and function”
5. “There is a need to describe the nature and prevalence of vaccine adverse events in children with metabolic disorders and assess risk factors for these events.”
6. “As mentioned in the draft scientific agenda, many key questions have not yet been adequately addressed. Many of the studies to date have relied on data from the Vaccine Adverse Effects Reporting System (VAERS). While this system has clear strengths such as its broad coverage, it nevertheless has substantial limitations (Ellenberg and Braun, Drug Safety, 2002). Because the system relies on passive self‐report, a major limitation is under‐ reporting such that only a small fraction of adverse events are reported. Furthermore, events that occur weeks following vaccination are less likely to be reported than those that are proximal to the vaccination.”
7. “Many fundamental questions have not been addressed, such as whether the use of combination vaccines confers increased risk for adverse events and whether there are subgroups in the general population that are more vulnerable to serious adverse effects of vaccines, including ASD.”
8. “Research has shown that children with metabolic disorders, including mitochondrial disorders, may experience neurological decline when physiologically challenged. There have been reports of metabolic crisis after receiving vaccinations”
9. “As noted in the draft agenda, preliminary results from a VSD study underway found that children aged 12‐23 months who received MMRV vaccine were about 2 times more likely to have febrile seizures during the 7‐10 days after vaccination than children who received separate MMR and varicella vaccines at the same visit (CDC MMWR, 2008). In a population‐based study, there has been a report of an increased risk for ASD after infantile seizures during the first year of life”
10. “Studies that can address the current questions raised by parents are feasible. Clinical studies of individuals with ASD can address whether certain metabolic conditions associated with ASD are correlated with increased risk for serious adverse effects. Case‐control studies and randomized clinical trials can be conducted to address whether there are differences in adverse effects associated with a combination vaccine versus individually administered components”
11. “Fever after vaccination is common and can induce seizures in vulnerable children”
12. “For example, a recent study identified mutation in a sodium channel gene in children who developed encephalopathy after pertussis vaccines, suggesting that genetic factors may influence the risk for neurological deterioration after vaccination”
13. “Children with metabolic diseases are at higher risk of health complications from diseases that are prevented by immunizations”
14. “Such research could have wide‐ranging effects on clinical practice/vaccination policy. For example, it could allow pediatricians to identify subgroups of children who may benefit from a different vaccine schedule or for whom careful monitoring of adverse effects is warranted.”
15. “Over the past decade, parental concerns, both in the general population and the autism community, over the possible link between immunization and increased risk for autism spectrum disorders (ASD) have only increased despite concerted and persistent efforts by the medical community to reassure the public about the safety of vaccines.”
16. “It is Autism Speaks’ position that the best way to ensure that parents are confident in the safety of our vaccine program and, at the same time, protect the minority of children who may be at increased risk for serious adverse effects of vaccinations, is to foster collaborative, trusting relationships among the general public, the medical and scientific communities, and the federal government whose mandate it is to conduct research on the safety of vaccines.”
17. “Establishing and maintaining a trusting relationship and providing answers to parents’ questions cannot be achieved by one set of studies addressing one set of questions, but rather it will require an on‐going process of scientific discovery as medical science continues to uncover individual differences that predict differential responses to vaccines and other medical interventions. We need to embrace our obligation to address new questions with an open mind, adequate resources, and renewed commitment.”
January 25, 2009
National Vaccine Advisory Committee
As outlined in Autism Speaks’ policy statement posted on our website (see
ASDs are a group of severe developmental disabilities characterized by lifelong impairments in communication and social interaction. Many individuals with ASD never speak or live independently, have severe cognitive disabilities, and suffer a wide range of associated medical conditions. In the past several years, the prevalence of ASD has increased dramatically, underscoring the potential role of environmental factors in its etiology. Currently, ASD is a highly prevalent disorder, estimated to occur in 1 out of every 150 individuals. The total annual societal per capita costs of caring for and treating a person with ASD in the U.S. is estimated to be $3.2 million and approximately $35 billion of the entire birth cohort of people with ASD (Ganz, Archives of Pediatric and Adolescent Medicine, 2007).
In addition to abnormalities of the immune system, ASD has also been found to be associated with inherited metabolic diseases (Manzi et al. J. of Child Neurology, 2008), including mitochondrial disease (Weissman et al., PLoS ONE, 2008). There is a need to describe the nature and prevalence of vaccine adverse events in children with metabolic disorders and assess risk factors for these events.
4. Level of public concern
5. Feasibility of designing and implementing study
Some well‐designed studies that address whether thimerosal is associated with increased risk of neurocognitive impairments, such as Thompson et al. study (NEJM, 2007), excluded children with a diagnosis of ASD, as well as children who were born prematurely. Prematurity has been shown to be a risk factor for ASD (Limperopoulos et al., Pediatrics, 2008). Two studies are currently being conducted (VSD and CDC) examining whether thimerosal is associated with ASD, including regressive autism.
Research has shown that children with metabolic disorders, including mitochondrial disorders, may experience neurological decline when physiologically challenged. There have been reports of metabolic crisis after receiving vaccinations (Yang, Pediatric Neurology, 2006; Brady, Pediatrics, 2006; Kingsley, Pediatrics, 2006).
Fever after vaccination is common and can induce seizures in vulnerable children (Kohl, CID, 2004; Dale, ACIP Medicine, 2008; Brady, Pediatrics, 2006). As mentioned above, in a population‐based study, there has been a report of an increased risk for ASD after infantile seizures during the first year of life (Saemundsen eta l., Epilepsia, 2008). There have been anecdotal reports from parents of children with ASD that their child experienced high fever directly after immunization. There needs to be careful study of the pathophysiology and clinical consequences of fever after vaccination, including a possible association with ASD.
For example, a recent study identified mutation in a sodium channel gene in children who developed encephalopathy after pertussis vaccines, suggesting that genetic factors may influence the risk for neurological deterioration after vaccination (Berkovic, Lancet Neurology, 2006). In several studies, a susceptibility locus for ASD has been mapped near a cluster of voltage‐gated sodium channel genes on chromosome 2 (e.g. Shao et al., American J. of Human Genetics, 2002). Furthermore, mutations in SCN1A have been observed in ASD families (Weiss et al., Molecular Psychiatry, 2003). Research examining the association between ASD susceptibility genes, including SCN1A, and adverse effects of vaccination is clearly needed.