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Why won’t the government fund vaccine/autism research?

15 Jul

This question gets brought up a lot by some parent advocates. The are informed by groups promoting the idea of vaccine causation that the government is blocking this work. The evidence points strongly away from vaccines as a primary cause of autism, and investment in this area doesn’t seem wise. At least that’s the viewpoint of the majority of parents (including myself), autistics and researchers. But some remain unconvinced and want vaccine/autism research performed. And they are upset that none of this work is being performed.

Here’s a different question: why are the groups who promote the idea that vaccines cause autism failing to inform their members that, yes, indeed vaccine/autism research is being performed?

Or, to put it simply: vaccine/autism research is being performed and it’s being funded by the government. But you wouldn’t know that if you read, say, the Age of Autism blog, Generation Rescue’s website, SafeMinds’ website, or the other groups advocating for this research. If you are interested in vaccine/autism research and you are reading about these projects for the first time here, ask yourself “why have these orgs not informed me of this?”.

As noted here recently, Tom Insel discussed an upcoming vaccine/autism study. Already commissioned, performed and in the publication stage. That announcement was in April. What was the response from the community that has pleaded for vaccine/autism research? For the first few months: Silence. In July, SafeMinds finally put out an article showing that they were “worried” about this study. I don’t see much discussion of this announcement from other groups or outlets.

I’m not surprised by this. I’ve noted before that work on areas such as vaccines, mercury, environmental risk factor research and GI dysfunction don’t get discussed by the groups that are focused on these topics. I’ve covered the research in these areas more than they have.

So let’s get back to what other work is going on in vaccines and autism. Let’s start with the simple question: how would you find out? One place is the IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool. That could use updating, but it is an easily searchable database. Another place is NIH Reporter. It’s less easy to use than the Portfolio Analysis Tool and includes all of NIH. I.e. it covers non autism topics and doesn’t include projects being done outside of NIH (say, by Autism Speaks or other private funders). But, search Reporter for autism and vaccines or mercury and what do you get? Quite a number hits. Let’s consider a few.

How about:

There’s a study by Ian Lipkin’s group at Columbia titled: GENE-ENVIRONMENT INTERACTIONS IN AN AUTISM BIRTH COHORT.

There’s a study by Gene Sackett’s group, A PRIMATE MODEL OF GUT, IMMUNE, AND CNS RESPONSE TO CHILDHOOD VACCINES. This appears to be a follow on project to the Laura Hewitson studies that were discussed a great deal online a few years ago.

Isaac Pessah’s group at the UC Davis MIND Institute has a project NEURODEVELOPMENTAL TOXICOLOGY OF AUTISM. Prof. Pessah also had a multiyear project ENVIROMENTAL FACTORS IN THE ETIOLOGY OF AUTISM

Judy Van de Water’s group at UC Davis MIND Institute has a project IMMUNOLOGICAL SUSCEPTIBILITY OF AUTISM.

The Lewin Group study (which I believe is the one mentioned by Tom Insel) STUDY OF HEALTH OUTCOMES IN CHILDREN WITH AUTISM AND THEIR FAMILIES. (Just a note–see how this has been publicly available information for a year?)

There’s the CHARGE study, which is looking at a large array of potential environmental risk factors, including specifically mentioning mercury. THE CHARGE STUDY: CHILDHOOD AUTISM RISKS FROM GENETICS AND THE ENVIRONMENT

Here’s a 2014 grant to Ray Palmer, well known to the groups promoting mercury as a cause of autism, PRENATAL TIMING OF HEAVY METAL EXPOSURES FROM AUTISTIC AND NON-AUTISTIC CHILDREN.

The EPIDEMIOLOGICAL RESEARCH ON AUTISM IN JAMAICA – PHASE II project is continuing (hence the Phase II) and includes work on mercury.

There are more projects. Some I left out because they are older. But I think the point is made and is very clear: vaccine/autism and mercury/autism research are being funded.

And that is without even discussing how research on the biology of autism feeds into all etiological questions. Whether it’s vaccine, genetics or what have you, if you understand the biology, you have a better chance of understanding the cause. (when I searched NIH Reporter with the terms Autism and Immune, I got 25 pages of hits. Sure, not all are on-topic, but that’s 25 pages, 606 topics).

Here are the full abstracts–with emphasis added by me–for the NIH Reporter projects mentioned above.

GENE-ENVIRONMENT INTERACTIONS IN AN AUTISM BIRTH COHORT.

Abstract Text:
Reports of increasing prevalence of autism spectrum disorders (ASDs), a set of highly genetic conditions, are intensifying interest in the role of environmental exposures, including infectious, immune, and toxic factors. Retrospective studies exploring associations between environmental factors and ASDs are compromised by selection bias, small sample sizes, possibly invalid diagnosis, and absence of biologic measures. This prospective study will employ an unselected birth cohort of 75,500 in which cases are ascertained through screening of the entire population, diagnoses established using uniform procedures, extensive histories and clinical data obtained, and biologic samples collected serially throughout pregnancy and early childhood. The application of high throughput laboratory assays to derive maximal information from developmentally-influenced, finite, and nonrenewable biologic samples, and inclusion of early screening and diagnostic assessments, will permit an unprecedented, rich view of the longitudinal trajectory and nascent signs and symptoms of ASDs, facilitate discovery of biomarkers, and afford unique insights into the role of gene:environment interactions in ASD pathogenesis. Specific aims are to: (1) establish the autism Birth Cohort (ABC) through ascertainment of cases of autism spectrum disorder (ASD, N=150-233) and selection of controls (N-1000) from the Norway Mothers and Child (MoBa) cohort; (2) examine biologic pathways that may predispose to ASD, through evaluation of immune, endocrine, and neuroregulatory factors in mothers during early gestation or at birth and in children, at birth or 30 months postnatal; (3) identify environmental factors that may be directly or indirectly associated with ASD, including pre- or postnatal infection, vaccination, very low birth weight or other obstetric risk factors in which infections are implicated, dietary and/or environmental exposure to methylmercury; (4) describe the natural history of clinical, anthropometric, and neurobehavioral features of ASD; and (5) explore genotypic influences that may be directly or indirectly associated with ASD by testing associations of ASD and/or its endophenotypes with family history of autoimmune disease or selected candidate genes, and investigating conditional gene-environment effects using antecedent factors found to influence ASD risk.

NIH Spending Category:
autism; Brain Disorders; Clinical Research; Genetics; Immunization; Mental Health; Mental Retardation (Intellectual and Developmental Disabilities (IDD)); Neurosciences; Pediatric; Prevention; vaccine Related

Project Terms:
autism spectrum disorder; Autistic Disorder; Autoimmune Diseases; base; Biological Assay; Biological Markers; Birth; Candidate Disease Gene; case control; Child; Clinical; Clinical Data; cohort; Cohort Studies; Collaborations; Collection; Confusion; Control Groups; design; Development; Diagnosis; Diagnostic; Discipline of obstetrics; Disease; disorder risk; Drops; early childhood; Endocrine; endophenotype; Environment; Environmental Exposure; Environmental Risk Factor; Epidemic; Epidemiologic Studies; Evaluation; Exposure to; Family history of; gene environment interaction; Genes; Genetic; Hereditary Disease; Immune; immune function; Infection; insight; interest; Investigation; Laboratories; Life; Measles; Measures; member; Mercury; Methylmercury Compounds; Mothers; Mumps; Natural History; Nested Case-Control Study; neurobehavioral; Neurodevelopmental Disorder; Norway; novel; Pathogenesis; Pathway interactions; Phase; Population; postnatal; Pregnancy; prenatal; Prevalence; Procedures; prospective; Prospective Studies; Recording of previous events; Relative (related person); Reporting; Research; Research Design; Retrospective Studies; Risk Factors; Role; Rubella; Sample Size; Sampling; Screening procedure; Selection Bias; Signs and Symptoms; Specimen; Testing; Vaccination; Vaccines; Vacuum; Very Low Birth Weight Infant

A PRIMATE MODEL OF GUT, IMMUNE, AND CNS RESPONSE TO CHILDHOOD VACCINES.

Abstract Text:
This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. Primary support for the subproject and the subproject’s principal investigator may have been provided by other sources, including other NIH sources. The Total Cost listed for the subproject likely represents the estimated amount of Center infrastructure utilized by the subproject, not direct funding provided by the NCRR grant to the subproject or subproject staff. Diagnoses of childhood developmental disorders involving autism-spectrum symptoms are increasing, estimated to affect 1 in 100 children in the United States. Childhood Vaccines have been hypothesized to be contributory factors to this increase. The childhood vaccine regimen has an experimentally unstudied potential for cumulative and synergistic toxicities and possible immunologic interference to normal development. A prior study developed a primate model to assess neurodevelopmental consequences of the 1994-1999 pediatric thimerosal vaccine regimen (1994-1999). Significant neurodevelopmental deficits were evident for vaccinated animals in survival reflexes and standardized cognitive tests, and exposed animals developed gastrointestinal inflammation associated with focal transmural colitis, lymphoid hyperplasia, and syncytia.

NIH Spending Category:
autism; Brain Disorders; Cancer; Digestive Diseases; Immunization; Lymphoma; Mental Health; Mental Retardation (Intellectual and Developmental Disabilities (IDD)); Pediatric; Rare Diseases; vaccine Related

Project Terms:
Affect; Animals; Autistic Disorder; Child; Childhood; Cognitive; Colitis; cost; Development; developmental disease/disorder; Diagnosis; Funding; gastrointestinal; Giant Cells; Grant; Immune; Immunologics; Inflammation; lymphoid hyperplasia; Modeling; National Center for Research Resources; Neurodevelopmental Deficit; Primates; Principal Investigator; Reflex action; Regimen; Research; Research Infrastructure; Resources; response; Source; Symptoms; Testing; Thimerosal; Toxic effect; United States; United States National Institutes of Health; Vaccinated; Vaccines

NEURODEVELOPMENTAL TOXICOLOGY OF AUTISM

Abstract Text:
The long range goal is to determine if exposure to environmental toxicants early in development contributes to the etiology of neurodevelopmental disorders such as autism. A related goal is to determine whether susceptibility to autoimmune disease increases the neurotoxicity of environmental contaminants and increases the risk for developing disorders such as autism. Understanding how exposure to environmental toxicants may contribute to the etiology of neurodevelopmental disorders is important so that the exposure risks can be identified and minimized. If immune system dysfunction is found to increase the risk of exposure to environmental toxicants, then exposure limits to toxic substances can be lowered, and children with immune system dysfunction who may be at increase risk can be identified and protected. The specific aims are to expose mouse strains with low (C57BL/6J) or high (SJL mice) susceptibility to autoimmunity perinatally to either methylmercury (MeHg), polychlorinated biphenyl 95 (PCB 95) or polybrominated diphenyl ether 47 (BDE 47). We will then compare the effects of toxicant exposure between these mouse strains on brain development, complex social behaviors, and immune system function. The hypothesis is that perinatal exposure to each of these toxic substances will impair brain development and behavior, and that suscepbility to autoimmune disease will increase the neuro- and immunotoxicity of these agents. We will also explore a potentially new model of autism in mice injected prenatally with unique autoantibodies isolated from the serum of mothers who have given birth to two more more autistic children. Brain development will be examined histologically using stereological procedures and immunohistochemistry. Complex social behaviors will be studied using behavioral testing procedures established in our laboratory that measure social recognition, social interaction and social communication in mice. Immune system status will be established by measuring cytokines, chemokines, immunoglobulins, and quantifying immune system response to antigenic stimulation. In addition, seizure susceptibility will be measured in toxicant-exposed mice as well as measures of synaptic excitibility and plasticity in hippocampal brain slices. These studies will provide critical new information on the role of the immune system and its interaction with environmental contaminants in autism and other neurodevelopmental disorders.

NIH Spending Category:
autism; Autoimmune Disease; Behavioral and Social Science; Brain Disorders; Epilepsy; Mental Health; Mental Retardation (Intellectual and Developmental Disabilities (IDD)); Neurodegenerative; Neurosciences; Pediatric; Perinatal Period – Conditions Originating in Perinatal Period

Project Terms:
Age; Animal Testing; Antibodies; Anxiety; autistic Children; Autistic Disorder; Autoantibodies; Autoimmune Diseases; Autoimmune Process; Autoimmunity; Behavior; behavior test; Behavioral; Biological Assay; Birth; Brain; CCL2 gene; CCL3 gene; CCL4 gene; Cerebellum; chemokine; Chemokine (C-C Motif) Ligand 4; Child; Complex; cytokine; density; Development; developmental disease/disorder; developmental neurotoxicity; Disease; Environmental Pollution; Enzyme-Linked Immunosorbent Assay; Etiology; Exposure to; fetal; Fibroblast Growth Factor; Flurothyl; Fright; Glutamate Receptor; Goals; Granulocyte-Macrophage Colony-Stimulating Factor; Hippocampus (Brain); Histologic; Homer 1; human TNF protein; IL8 gene; Immune response; Immune system; Immune System and Related Disorders; Immunoglobulin A; Immunoglobulin G; Immunoglobulin M; Immunoglobulins; Immunohistochemistry; Immunophilins; immunotoxicity; In Vitro; in vivo; Infection; Interferon Type II; Interleukin-10; Interleukin-17; Interleukin-4; Interleukin-5; Interleukin-6; Kindling (Neurology); Laboratories; Learning; Leptin; link protein; Long-Term Potentiation; Measures; Memory; Metabotropic Glutamate Receptors; Methods; Methylmercury Compounds; Mitogens; Modeling; Mothers; mouse model; Mouse Strains; Mus; N-Methylaspartate; neurobehavioral disorder; neurodevelopment; Neurodevelopmental Disorder; Neurologic; Neuronal Injury; Neurons; neurotoxicity; offspring; Pentylenetetrazole; Perinatal; Perinatal Exposure; phenyl ether; Plasma; Poisons; Polychlorinated Biphenyls; postnatal; Predisposition; pregnant; prenatal; prenatal exposure; Preparation; Principal Investigator; Procedures; programs; Proteins; RANTES; receptor; receptor function; repaired; Research Design; Research Personnel; research study; response; Risk; Role; Ryanodine Receptor Calcium Release Channel; Ryanodine Receptors; Seizures; sensory gating; Sensory Motor Performances; Serological; Serum; Signal Pathway; Signal Transduction; SJL Mouse; SJL/J Mouse; Slice; Small Inducible Cytokine A3; social; Social Behavior; social communication; Social Interaction; Source; Splenocyte; Structure; Synapses; synaptotagmin; System; T-Cell Proliferation; Testing; Tetanus; Tetanus Toxoid; Tetanus vaccine; Toxic Environmental Substances; toxicant; Toxicant exposure; Toxicology; Tumor Necrosis Factor-alpha; Vascular Endothelial Growth Factors; Western Blotting; Work; Xenobiotics

IMMUNOLOGICAL SUSCEPTIBILITY OF AUTISM.
Abstract Text:
Recent studies indicate that immune function in children with autism spectrum disorder (ASD) is profoundly altered compared to developmentally healthy controls. There is a strong interface between the immune system and the neurologic network, and successful neurodevelopment is contingent upon a successful interaction between these two systems. We have identified several aspects of immune dysfunction in patients with autism compared with typically developing controls. These include a reduced response to vaccine antigens of bacterial origin, altered cytokine levels in plasma and upon stimulation of PBMC, increased levels of leptin in patients with early onset autism, and autoantibodies to brain antigens. This wide and complex variety of immune anomalies noted in our first funding period is in keeping with the broad range of phenotypes encompassed by the autism spectrum. Thus, we will build upon our earlier findings of both serologic and cellular changes in immune function. While our studies in the previous project period were aimed at a broad analysis of immune function in patients with autism, the current proposal will address the mechanisms responsible for the numerous alterations in immune homeostasis uncovered in our earlier studies. Therefore, our primary focus will be on the mechanisms responsible for such anomalies in immune function through an in depth analysis of cellular immune function. Our overall hypothesis is that patients with autism have a fundamental defect at the cellular level that ultimately leads to abnormalities in immune function and heightened susceptibility to environmental triggers. To examine this, we propose to: (1) examine longitudinally the serologic profile of children with ASD to ascertain whether the various immune changes noted in our first studies are maintained and/or deteriorating further; (2) determine which immune cell population(s) plays a critical role in the immune dysfunction seen in patients with autism; and (3) fully characterize the autoantibody response in a subpopulation of children with ASD and some mothers of children with ASD. It must be noted that due to the highly heterogeneous nature of autism, there will potentially be immunologic differences that relate to sub-groups of patients with autism. Therefore, we will carefully define the study groups based on our current data to include children with early onset autism, children with delayed onset/regressive autism, general population controls, and children with developmental disorders without ASD. The studies will be performed on CHARGE subjects formerly analyzed by our laboratory (CHARGE-BACK study). This will allow us to extend our prior studies longitudinally to determine if the immune dysregulation, such as increased leptin levels in the early onset patients, remains over time. The following aims address both the serologic and cellular aspects of immune function in patients with autism.

NIH Spending Category:
autism; Brain Disorders; Mental Health; Mental Retardation (Intellectual and Developmental Disabilities (IDD)); Neurosciences; Pediatric

Project Terms:
Address; Age; anti-IgM; Antibodies; Antigens; autism spectrum disorder; autistic Children; Autistic Disorder; Autoantibodies; B-Lymphocytes; Back; base; Behavior; Blood Cells; Brain; calcium indicator; Calcium Signaling; Cell Culture Techniques; Cell physiology; Cell Proliferation; Cell surface; Cells; Child; Color; Complex; Cultured Cells; cytokine; Data; Defect; Development; developmental disease/disorder; Digestion; Disease; Dose; Dyes; early onset; Environmental Health; Etiology; fetal; Flow Cytometry; Flu virus; Frequencies (time pattern); Funding; Gel; General Population; HLA-DR Antigens; Homeostasis; Human; IgE; Immune; immune function; Immune system; Immune System Diseases; Immunoglobulin A; Immunoglobulin G; Immunoglobulin M; Immunologics; Label; Laboratories; Lasers; Leptin; Maps; Mercury; Microarray Analysis; Mitogens; Modeling; Mothers; Mus; Nature; neurodevelopment; Neurologic; Oligonucleotides; Pathogenesis; Pathology; Patients; Pattern; Peptides; Peripheral Blood Mononuclear Cell; Phenotype; Plasma; Play; Poly I-C; Population; Population Control; Predisposition; Pregnancy; Principal Investigator; Production; programs; Reagent; research study; response; RNA; Role; Serological; Serum; Source; Spectrometry, Mass, Matrix-Assisted Laser Desorption-Ionization; Staining method; Stains; System; T-Lymphocyte; Testing; Time; TNFSF5 gene; Tube; Up-Regulation (Physiology); Upper arm; vaccine Antigen; Xenobiotics

STUDY OF HEALTH OUTCOMES IN CHILDREN WITH AUTISM AND THEIR FAMILIES

Abstract Text:
This contract modification is to extend and supplement Contract HHSN271201000033C, consistent with the scope of work of “Study of Health Outcomes in Children with autism and Their Families¿ in order to access the currently validated database developed under the contract to provide for further analysis . Autism Spectrum Disorder (ASD) is a significant public health concern, with an estimated prevalence of 1 in 88 children in the United States. Much of the research to date has focused on the core social and communication deficits of ASD, but there are anecdotes and some survey data suggesting that the rate of comorbid health conditions may also be elevated in this population. Furthermore, despite several large-scale epidemiological studies that have assessed but not found any potential association between ASD and vaccinations, public concerns persist about such a causal link. At least partly as a consequence, health officials in the United States have reported an increased rate of vaccine refusal in the general population. The Study of Health Outcomes in Children with autism and their Families was begun two years ago. Under this contract, the Contractor analyzed a large dataset of retrospective commercial health plan claims of 46,236 children with ASD, their parents and siblings, and a comparison cohort of children and family members. They successfully completed the analyses requested in the original statement of work, which included a study of the validity of ASD diagnoses in the claims data, and descriptions of health outcomes and health care utilization of the ASD cohort, their family members, and the comparison cohorts.

NIH Spending Category:
autism; Brain Disorders; Immunization; Intellectual and Developmental Disabilities (IDD); Mental Health; Pediatric; Prevention; vaccine Related

Project Terms:
Anecdotes; autism spectrum disorder; Autistic Disorder; Child; cohort; Contractor; Contracts; Data; Data Set; Databases; Diagnosis; Epidemiologic Studies; Family; Family member; General Population; Health; health care service utilization; Health Planning; Link; Modification; Outcome; Parents; Population; Prevalence; public health medicine (field); Recording of previous events; Reporting; Research; Siblings; social communication; Surveys; United States; Vaccination; Vaccines; Work

CORE D: MOLECULAR GENOMICS CORE

Core 4 is the Molecular Core. It serves as the central resource for the projects that isolate and process RNA on Affymetrix microarrays, and for performing RT-PCR confirmation of the microarray data for those projects. The UCD Affymetrix Core Facility is run by Dr. Jeffrey Gregg and is equipped with fluidics stations, hybridization ovens, and the new scanner required to scan the human Affymetrix U133 2.0PLUS arrays. Preliminary data from the previous CHARGE study has shown that there are changes in gene expression in the blood of children with autism compared to control children in the general population (GP) and to control children with mental retardation and developmental delay (MR/DD). The blood genomic profile in children with autism without regression (A) was different from controls, autism spectrum disorder (ASD) and different from children with autism with regression (A-R). In addition, there is a group of regulated genes in most children with A, A-R and with ASD that are expressed by natural killer (NK) cells in peripheral blood, suggesting an abnormality in this cell type that is common to all types of autism. These NK-cell related genes are expressed by all of the autism phenotypes including A, A-R and ASD, and hence may point to common pathways that underlie the common language and behavioral abnormalities in all three disorders. This core will be utilized by the projects as follows. Project #1: Aim #1: Perform genomic (RNA expression on microarrays) studies on blood from children with autism in the 4-9 year old range, and compare to the blood genomic profiles we have obtained in children with autism in the 2-5 year old age range. Aim #2. Compare gene expression as a function of blood metal levels in both age groups in A, A-R, ASD, MR/DD and GP groups. Aim #3. Examine genomic profiles in pregnant mothers who have previously given birth to an autistic child to determine if there is a specific genomic profile that correlates with whether the mother’s fetus is destined to develop autism. Project #2. Aim #1. Describe the gene expression profiles in the blood using specific white blood cell subsets including NK cells for children with autism without regression, autism with regression, and ASD children compared to GP and delayed children. Aim #2. Examine gene expression following stimulation or activation of specific white blood cell subsets of A, A-R, ASD, MR/DD and GP children with: low level mercury; immune cell stimulation/activation with vaccine antigens and cell-specific mitogens; and xenobiotics. Project #3. Compare gene expression profiles in the blood of children with autism to the blood of experimental animals exposed to toxicants including organic mercury, PCB 95, and PBDE 47 (Project #3).

NIH Spending Category:
autism; Biotechnology; Brain Disorders; Genetics; Mental Health; Mental Retardation (Intellectual and Developmental Disabilities (IDD)); Pediatric

Project Terms:
5 year old; 9 year old; Accounting; Age; age group; Animals; autism spectrum disorder; autistic Children; Autistic Disorder; Autoantibodies; base; Behavioral; Birth; Blood; Blood specimen; cell type; Cells; chemokine; Child; Core Facility; cytokine; Data; Developmental Delay Disorders; Disease; Environmental Health; Fetus; Gene Expression; General Population; Genes; Genetic; Genetic Transcription; Genome; Genomics; Human; Immune; immune function; Inherited; Language; Leukocytes; Mental Retardation; Mentally Disabled Persons; Mercury; Metals; Mitogens; Molecular; Molecular Profiling; Mothers; Natural Killer Cells; Pathway interactions; Patients; pentabromodiphenyl ether; peripheral blood; Phenotype; Polychlorinated Biphenyls; Population Group; pregnant; Principal Investigator; Process; programs; Resources; Reverse Transcriptase Polymerase Chain Reaction; RNA Processing; Running; Scanning; Subgroup; Surveys; Toxic Environmental Substances; toxicant; vaccine Antigen; Xenobiotics

THE CHARGE STUDY: CHILDHOOD AUTISM RISKS FROM GENETICS AND THE ENVIRONMENT

Abstract Text:
DESCRIPTION (provided by applicant): Few rigorous epidemiologic studies have addressed the environmental causes and biologic underpinnings of autism spectrum disorder (ASD). The CHARGE (Childhood autism Risks from Genetics and Environment) Study is a large, population-based case-control investigation of environmental risk factors, broadly defined, in relation to ASD and developmental delay without ASD symptoms, with referents from the general population. Fieldwork began in 2003, and by now CHARGE has published widely on exposures such as air pollution, mercury, flame retardants, maternal nutritional status in the peri-conception, untreated fever during pregnancy, mitochondrial dysfunction, candidate genes, a wide array of functional immune markers in both the child and the mother, and maternal metabolic conditions including obesity and diabetes. This last finding is notable, given the epidemic of obesity and type 2 diabetes that has occurred in parallel with the steady rise in ASD over the last few decades. Moreover, an emerging literature implicates several endocrine disrupting chemicals as contributing to obesity and metabolic dysregulation, including hyperinsulinemia, and to neurodevelopmental disorders as well. This project therefore builds upon these observations in several ways. First, obesity and type 2 or gestational diabetes will be examined in a larger sample, and glucose challenge test (GCT) results for the first time, to determine associations not only with development of ASD and intellectual impairment in the children, but also with specific speech and language delays, behavioral phenotypes such as attention deficits or hyperactivity, and gene expression. Second, these maternal metabolic conditions will be evaluated for associations with markers of both metabolic and immune dysregulation to be measured in neonatal bloodspots. Third, the predictive value of neonatal bloodspot markers for a later diagnosis of ASD or other child developmental and behavioral outcomes will be assessed. Fourth, the maternal metabolic conditions will be analyzed for potential links with upstream exposures to phthalates and anti- bacterial compounds, ubiquitous chemicals in common household products. Finally, this project will examine how gene variants that play a role in biochemical pathways relevant to the processes under study may influence susceptibility of the mother, the neonate or the child. To ensure adequate power for this analysis of gene-environment interaction, the sample size will be increased to 2400 children. This project addresses several goals set by the NIH Interagency autism Coordinating Committee: 1) to discover environmental factors contributing to ASD, particularly in the prenatal period, 2) to understand biological mechanisms for ASD risk, including gene-by-environment interactions, and 3) to identify children at risk for ASD at earlier time points. Results of this detailed inquir into early exposures, maternal pathophysiology and prognostic markers in the newborn will set the stage for developing prevention strategies.

Public Health Relevance Statement:
PUBLIC HEALTH RELEVANCE: This project addresses several issues of direct public health relevance, and the science to be produced will lead to benefits in a wide cross-section of the U.S. population. Because obesity is reaching epidemic proportions and other metabolic conditions such as Type 2 diabetes, gestational diabetes, and dyslipidemia are rising steeply, understanding environmental causes has tremendous public health potential for moving us closer to effective prevention strategies. If environmental chemicals used in common household products do prove to adversely affect body weight, measures can be taken to either reformulate those products, removing them from the market, or to educate consumers on how to avoid them. Similarly, steady increases in ASD might be curbed if the postulated causal pathway is supported by the evidence.

NIH Spending Category:
autism; Behavioral and Social Science; Brain Disorders; Clinical Research; Diabetes; Genetic Testing; Genetics; Intellectual and Developmental Disabilities (IDD); Mental Health; Neurosciences; Nutrition; Obesity; Pediatric; Perinatal Period – Conditions Originating in Perinatal Period; Prevention

Project Terms:
Address; Affect; Age; aged; Air Pollution; Anti-Bacterial Agents; Attention; autism spectrum disorder; Autistic Disorder; Behavior; Behavioral; Biochemical Pathway; Biological; Biological Markers; blood glucose regulation; Body Weights and Measures; C-Peptide; Candidate Disease Gene; case control; CCL2 gene; chemical association; Chemicals; Child; Childhood; Conceptions; cytokine; Data; Development; Developmental Delay Disorders; Diabetes Mellitus; Diagnosis; disorder risk; Dyslipidemias; Endocrine Disruptors; Ensure; Environment; environmental chemical; Environmental Risk Factor; Epidemic; Epidemiologic Studies; ESR1 gene; Exposure to; Fever; Flame Retardants; Functional disorder; gene environment interaction; Gene Expression; General Population; Genes; Genetic Risk; Gestational Diabetes; Glucose; glucose metabolism; Goals; high risk; Household; Household Products; human TNF protein; Hyperactive behavior; Hyperinsulinism; Hypertension induced by pregnancy; Immune; immune function; Immunologic Markers; Impairment; inattention; Inflammation; Inflammatory; Insulin Resistance; insulin sensitivity; interest; Interleukin-6; Investigation; Language Delays; Lead; Leptin; Link; Literature; Marketing; Maternal Exposure; Measures; mercury; Metabolic; Metabolic Marker; Metabolism; mitochondrial dysfunction; Mothers; Neonatal; neonate; neurodevelopment; Neurodevelopmental Disorder; Newborn Infant; Non-Insulin-Dependent Diabetes Mellitus; Nutritional status; Obesity; Outcome; Pathway interactions; Phenotype; phthalates; Play; Population; population based; PPARG gene; Predictive Value; Predisposition; Pregnancy; prenatal; Prevention strategy; Process; prognostic; Prognostic Marker; public health medicine (field); public health relevance; Publishing; Regulation; Risk; Role; RORA gene; RPL10 gene; Sample Size; Sampling; Science; Self Care; Speech Delay; Staging; Symptoms; Test Result; Time; Triclosan; Tumor Necrosis Factor-alpha; United States National Institutes of Health; Variant; Variation (Genetics)

PRENATAL TIMING OF HEAVY METAL EXPOSURES FROM AUTISTIC AND NON-AUTISTIC CHILDREN

DESCRIPTION (provided by applicant): Little is known about the etiology or risk factors for autism, a disease affecting 1 in 50 children in the U.S. While genetic and environmental factors are thought to act together, the specific mechanisms are not known and the measurement of environmental risk factors during critical periods of neurodevelopment has been lacking. This case-control study seeks to apply a novel dental biomarker of early life metal exposure, including in utero, to identify risk factors for ASD. Beyond looking at exposure intensity, we will be able to identify differences in exposure timing between cases and controls. This will allow us to identify critical windows when exposure, even at low levels, increases the risk of ASD. Using the proposed biomarker, we will directly assess fetal exposure, and will not rely on maternal biomarkers which may only provide an indirect measure of fetal exposure to metals. This work will have substantial impact on epidemiologic investigations of the relation of early life chemical exposures to ASD and other neurodevelopmental disorders as it can be used to objectively reconstruct both exposure intensity and timing.

Public Health Relevance Statement:
PUBLIC HEALTH RELEVANCE: Little is known about the causes of autism. This proposal seeks to apply a novel dental biomarker of early life metal exposure, including in utero, to identify risk factors for ASD. Beyond looking at exposure intensity, our application is novel in that we will be able to identify differences in exposure timing between cases and controls. This will allow us to identify critical windows when exposure, even at low levels, increases the risk of ASD.

Project Terms:
Accounting; Address; Affect; Aluminum; analytical method; Animals; Apatites; Arsenic; autism spectrum disorder; autistic Children; Autistic Disorder; Binding (Molecular Function); Biological; Biological Markers; bone; Cadmium; Calcified; Calcium; case control; Case-Control Studies; Chemical Exposure; Chemicals; Child; Childhood; Chromium; critical period; Data; deciduous tooth; Dental; Dentin; Development; Disease; early life exposure; Elements; Environment; Environmental Exposure; Environmental Risk Factor; Epidemic; Epidemiologic Studies; Etiology; Exposure to; fetal; Fetus; Genes; Genetic; Health; Heavy Metals; Human; Immune system; in utero; Investigation; Lead; Life; Literature; longitudinal design; Manganese; Measurement; Measures; mercury; Metal exposure; Metals; Methodology; Methods; mineralization; Mothers; neurodevelopment; Neurodevelopmental Disorder; Nickel; novel; Perinatal; Perinatal Exposure; Play; postnatal; Predisposition; Pregnancy; prenatal; Property; prospective; public health relevance; Recording of previous events; repository; Risk; Risk Factors; Role; Sampling; skeletal; Staging; Time; Tissues; Tooth structure; Toxic Environmental Substances; toxicant; Toxicant exposure; Work

Same old Jenny

27 Jun

Jenny McCarthy is back in the news. It appears that The View is not renewing her contract. In fact, there seems to be quite a shakeup at The View with many people leaving.

Jenny McCarthy is responding to this news, discussing fellow View host Sherri Shephard as picked up by Fox News.

“If Sherri goes … I go too,” McCarthy tweeted Thursday from her verified account, adding “#sisters,” followed by another tweet: “My View will be changing too. As will with many hard working folks. Thanks to everyone at the show for your dedication and an amazing year.”

Interesting spin there–instead of being released, she’s framing it as Jenny McCarthy, ready to take a stand and quit her job for her “sister”. Right. One thing I’ve learned over the years watching Jenny McCarthy, she’s good at spinning things to make herself look good.

She’s been a bit of a chameleon when it comes to her opinions. When it comes to autism, she started out with a new-age type “indigo child” approach. Then she took on the “vaccines cause autism” thing, which really catapulted her back into the public eye. Then the vaccine thing became a liability and she got quiet, finally posting an op-ed distancing herself from her previous views*. And, now, we see that the “View” she’s had for the past year was, well, just for “The View”. New job, new View. Will that involve autism, vaccines or something new? We don’t know. We just know that leaving the show means she can change her views.

Same old Jenny.


By Matt Carey

*Jenny McCarthy in her op-ed:
“I’ve never told anyone to not vaccinate.”

I don’t know if that’s true or not. I know she fueled a movement away from vaccines. For example, she wrote on Oprah Winfrey’s website in 2007, “But if I had another child, I would not vaccinate.” Yep, she has technical truth. She didn’t say, “you don’t vaccinate”. She just put herself out there as a leader of a community and said, “I won’t vaccinate”.

You know what word you won’t find in her Op-Ed? Autism. She doesn’t even approach the question that made her famous and that put so much fear in parents. It’s a very politically crafted article, in my opinion.

Jenny McCarthy on Larry King Live:

We’re scared. I mean moms and pregnant women are coming up to me on the street going, I don’t know what to do. I don’t know what to do. And I don’t know what to tell them, because I am surely not going to tell anyone to vaccinate. But if I had another child, there’s no way in hell.

She won’t tell someone *not* to vaccinate, but she “surely” won’t tell some one to vaccinate.

And later on Larry King Live

KING: Isn’t the problem here, Jenny, that people sometimes listen with one ear are going to panic. And not vaccine at all?

MCCARTHY: Probably. But guess what? It’s not my fault. The reason why they’re not vaccinating is because the vaccines are not safe. Make a better product and then parents will vaccinate.

Right. She gives people incorrect information about the safety of vaccines, they get scared and don’t vaccinate, but it’s not her fault because she’s on record saying (but not acting) she’s pro vaccine.

Another time on Larry King Live

MCCARTHY: We get that they’re saving lives, but the increase is ridiculous, you guys. Look, it’s plain and simple. It’s bull (EXPLETIVE DELETED).

KARP: No, it’s not.

MCCARTHY: Too many shots too soon.

(CROSS TALK)

MCCARTHY: My son died in front of me due to a vaccine injury. And there are many — every week I get a picture of a dead child.

KING: You lost a son?

MCCARTHY: Evan died in front of me for two minutes, cardiac arrest. Every week, I get a picture sent to me of a child that died following a vaccination.

What are parents supposed to think when they hear her say that vaccines kill, and that there are “too many, too soon”? Seriously, if there are “too many” vaccines, are parents supposed to say, “Jenny McCarthy is pro-vaccine. I’ll vaccinate my kid!” Too many means some vaccines shouldn’t be given which means, don’t vaccinate with those vaccines.

But, Jenny McCarthy doesn’t want you to think that’s what she said.

Small groups band together to attempt to derail autism research funding

21 May

The law that sets in place the structure to steer autism research is up for renewal this year. Public Law 109-406 was introduced as The Combating Autism Act in 2006. It was reauthorized in 2011. And it is up for reauthorization again this year.

The law authorizes congress to appropriate $190,000,000 per year for autism research. But there are those who would like to scuttle this effort.

A number of groups have banded together to form the “Autism Policy Reform Coalition” to oppose continuing with the law funding autism research. From The Hill:

But an upstart group known as the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.

Who are the “Autism Policy Reform Coalition”? Readers to Left Brain/Right Brain will likely recognize many of these groups. And quickly put together the link that ties them together. In case you haven’t already guess it, yes, it’s vaccines. With science against them on vaccines, they are trying to legislate their views into existence.

Many of these groups are very small. Well funded, but small. None has a truly large membership. Most if not all do not allow for their leadership to be selected by a vote of membership. In fact, for most it seems one can not join them as a member, so it’s difficult to understand how they claim to represent a large part of the autism communities. As far as I know, none have an autistic in any prominent position, much less as a leader. And yet they purport to represent the “autism community”.

While many of these groups have toned down their public statements on vaccines over the years, they are still heavily invested in the idea. One marker of their support for the idea and their lack of scientific rigor is their support for Andrew Wakefield. Mr. Wakefield is the disgraced former academic surgeon who lost his medical license for unethical behavior and whose work attempting to link the MMR vaccine with autism was declared one of the great science frauds by Time Magazine. Much more, his work has been shown to be wrong (for one example, here).

Here are the groups in the Autism Policy Coalition:

Autism is Medical

Appears to be involved with Andrew Wakefield and the failed vaccine-causation notion. They are relatively new having just received 501(c)(3) status this year.

Defending Academic Integrity and Research Foundation
Again, a new group. They appear to be in place in large part to give financial assistance to Andrew Wakefield’s lawsuit against Brian Deer and the BMJ (replacing the “Doctor Wakefield Justice Fund”).

Here’s a recent Facebook page post

D.A.I.R. Foundation is committed to integrity in academics and research and exists to support scientists, doctors, and researchers working in the best interest of the public health whose efforts have come under intense and unfair scrutiny.

At the heart of this is Dr. Andy Wakefield whose work challenged special interest groups who responded with opposition and injustice. The Weston A Price Foundation awarded Dr. Wakefield the prestigious Integrity in Science award at the 2013 Wise Traditions Conference where he was also keynote speaker at the banquet. The DAIR Foundation Fundraiser seeks to provide legal support for Dr Wakefield and others in similar situations. We welcome your support. Tickets are tax deductible and attendees receive cocktails, dinner from a Paleo-style buffet, and a copy of Dr Wakefield’s latest book. Dr. Wakefield will speak to dinner guests about his research and his documentary movie.

To purchase tickets visit the DAIR Foundation website and click on the envelope icon next to the text Orlando Fundraiser Event

It is unclear how one would become a member, voting or not, of DAIR, nor how their leadership is selected.

Generation Rescue

Generation Rescue is currently run by Jenny McCarthy, who has been very vocal in her support of the vaccine/autism link. When Andrew Wakefield lost his job at Thoughtful House, Generation Rescue stepped up with a $100,000 donation to his “Strategic Autism Initiative”.

Generation Rescue’s founder wrote:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

I can not find from their website whether one can join as a member (voting or not) or how their leadership is selected.

National Autism Association

Recently ran into controversy over a fundraiser for their stance on vaccines. Supporter of Andrew Wakefield. They state on their website:

The National Autism Association believes:
Vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.

One can become a dues-paying member of the NAA. Their most recent IRS form 990 shows that they took in $4,775 in dues. That would be fewer than 150 dues paying members at their $35 tier.

I can not see how leadership is selected; whether the membership is allowed to vote in open elections.

SafeMinds

One of the first organizations formed around the idea that vaccines cause autism. In specific, SafeMinds is focused on thimerosal in vaccines. The leadership has many of the same people over the past decade and I can’t see where one could join and whether if members are allowed, if they are allowed to vote for leadership.

Talk About Curing Autism

Another org that is strongly behind the vaccine-autism link.
(and here). It’s unclear if or how one would become a voting member. The leadership has been largely unchanged since founding.

The Thinking Mom’s Revolution

While I’m very fond of blogs, I don’t see them as organizations. Again, where does one join or vote for leadership? How does this blog count membership? Facebook likes?

I believe every one of the above groups considers Andrew Wakefield to be a hero, ignoring his proved ethical lapses (he was stripped of his medical license and the fact that his ideas on vaccines and autism have been shown to be wrong (e.g. Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study to select one of many)

I am a public member to the IACC, which was set up by the reathorization in 2011. All views above (and anywhere) are my own. While there are certainly things I would hope could be done differently in the way the U.S. manages autism research, handing control over to a few small groups so they can push a failed agenda on vaccines is not the direction we should go. Scuttling the reauthorization because support is not going into further research on this failed idea is also not the direction we need to take. Not at all.

It’s very telling that these groups for the most part hide or downplay their position on vaccines. The NAA, for example, recently ran into controversy about their stance and lost a fundraising opportunity with the national restaurant chain Chilis. The NAA leadership paid lip service to effect that the statements on their website are old views, but those statements remain. They know this position is a liability in public. But rather than accept that the view is a liability for good reason, they chose to downplay their views.

I don’t know if many in the legislature are giving them a serious listen, but I hope not. These groups do not represent the autism communities. They certainly are not showing an effective leadership, working to scuttle a law and lose hundreds of millions of dollars in funding if their own failed ideas are not supported.


By Matt Carey

Jenny McCarthy tries to position herself as in the “grey area” on vaccines

16 Apr

Jenny McCarthy seems a bit angry at bloggers. She’s written an op-ed for the Chicago Sun Times Jenny McCarthy: The gray area on vaccines. She’s not antivaccine, she wants us to know.

Well, Jenny, I don’t call you antivaccine. I call you irresponsible. And I stand by that. Mostly for your promotion of autism “therapies” which range from useless to abusive. Will you be speaking at the AutismOne conference this year? If so, will you speak out on forcing disabled children to drink diluted bleach solutions or undergo repeated diluted bleach solution enemas? Really, it’s time to grow a spine and stop lending your name to nonsense.

Back to vaccines, here’s what you say now:

For my child, I asked for a schedule that would allow one shot per visit instead of the multiple shots they were and still are giving infants.

But only a few short years ago you told us you wouldn’t vaccinate if you had another child. A very different statement. What are young parents supposed to listen to? “I’m pro vaccine” or “I wouldn’t vaccinate my child”.

Irresponsible.

You hide behind straw-man arguments, even now:

I believe in the importance of a vaccine program and I believe parents have the right to choose one poke per visit. I’ve never told anyone to not vaccinate. Should a child with the flu receive six vaccines in one doctor visit? Should a child with a compromised immune system be treated the same way as a robust, healthy child? Shouldn’t a child with a family history of vaccine reactions have a different plan? Or at least the right to ask questions?

Parents have the right to pick their schedule. You know that. You said that in your “Green Our Vaccines” rally (3:20). The schedule is “recommended”. Children need to be vaccinated to attend school, but no one checks when they got their vaccines. Why do children need to be vaccinated? Well, for one thing, those children with compromised immune systems you talk about. They are at high risk for infectious diseases. They are not treated the same as other children, either by their pediatricians (yes, I’m calling you out on a straw man there) nor in school, where we are expected to help protect them.

Here’s what I call irresponsible: scaring people about vaccines with your ill founded opinions. Telling people that you wouldn’t vaccinate your baby, but claiming to be “pro vaccine”.

KING: Jenny, will you agree that some cases have nothing to do with vaccines, which makes it more puzzling?

MCCARTHY: Absolutely. You know, environmental toxins play a role. Viruses play a role. Those are all triggers. But vaccines play the largest role right now and something needs to be done. You know, testing these kids for immune issues, you know, that would help so much, changing the schedule. You know, I don’t understand — as a precautionary measure, why don’t they do this?

So, vaccines play the largest role right now? Based on what data? I’ve seen your “studies” and they are junk. Do you still believe that “vaccines play the largest role”? The evidence is even more against you now. You had a chance to clarify your position on autism and vaccines in your op-ed and you avoided it.

Here are more scary statements, without evidence:

But I believe that’s — it’s an infection and/or toxins and/or funguses on top of vaccines that push children into this neurological downslide which we call autism.

Here you are with Mr. Carrey:

MCCARTHY: Go back to 1989 schedule when shots were only 10 and the MMR was on that list. I don’t know what happened in 1990, there was no plague that was killing children that we had to triple the amount of vaccines.

CARREY: What happened back in 1989 that warranted 26 more vaccines?

MCCARTHY: Greed.

CARREY: Are all of them absolutely necessary?

KING: Because they want to make money?

MCCARTHY: Of course.

Vaccines are only necessary because people want to make money. That’s “pro vaccine”? More to the point, that’s responsible? Sure, let’s go back to the time when Hib infections caused lasting harm or even death. Let’s go back to the 1980′s. The vaccine is just there to feed greed, right?

Irresponsible.

I can go on and on with various irresponsible quotes of yours. Again, your statement that you would not vaccinate if you had another child is probably the most irresponsible when it comes to vaccines. Here’s what the founder of your autism organization had to say about his team’s efforts:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

You once shouted down someone saying that vaccines were beneficial, shouting “bullshit” on Larry King live. When you have the guts to distance yourself from the above statement, perhaps I’ll agree that you have guts. That you mean what you say. For now, it’s just Jenny McCarthy, putting her name in the press, yet again. Jenny McCarthy, selectively quoting herself to make herself seem responsible.


By Matt Carey

Jenny’s McCarthy’s vaccine narrative called into question

16 Jan

Jenny McCarthy is the face of vaccine rejectionism in America. The story she tells of how her son, Evan, became autistic after his MMR shot is arguably the origin myth for the anti-vaccine movement, and the legions of  “Warrior Mothers” who follow her. Now, a competing narrative from someone else close to Evan calls the myth into question.

“I have such tremendous guilt for not speaking up when I knew something wasn’t right,” says Joyce Bulifant, Evan’s paternal grandmother. “But I was afraid of Jenny, and didn’t want to be the interfering mother-in-law. I was more concerned about me than taking care of Evan.” She agreed to speak with AutismNewsBeat.

McCarthy’s many critics have pointed to her numerous contradictions. She told Oprah Winfrey, for example, and there is “no doubt in my mind” that the MMR vaccine caused her son Evan’s autism. But she has also written that Evan showed signs of delay by six months – one year before the shot.

“I don’t think she’s very fond of me, but I love her because she is Evan’s mother. It makes me sad that we don’t have a true relationship,” says Bulifant. “That makes me very sad.”

The elf on the shelf

Bulifant is no stranger to Hollywood. The Virginia native has been acting for more than 50 years, and is well known for playing Murray Slaughter’s wife, Marie, on the Mary Tyler Moore Show. She was also a regular on The Match Game, and appeared in Airplane! (1980). She lives in Palm Springs with her fourth husband, actor and composer Roger Perry. Joyce has 15 grandchildren, and they all call her LaLa. When she speaks of Evan, who was born in May, 2002, it’s easy to imagine he is the favorite.

“Evan was here for Thanksgiving, and he left a note on my fridge that I just can’t take down. It reads ‘Dear LaLa, I hope that you love me so much. Thanks, Evan. I love you to the moon and back.

P.S., the Elf is in the freezer with turkey.”

The elf is a small, felt doll that sits on a shelf.

“He used to be afraid of the Elf on the Shelf, but last year he started moving it around the house, hiding it in different places and making it reappear. He said it had magical powers,” says Bulifant. “I love playing magic with him. He’s so very dear. It’s like he has a sixth sense that I don’t have.”

That sixth sense sparks her sense of wonder. “I am dyslexic and so is my son (Evan’s father, John),” she says. “We do compensate when we don’t have all the typical skills. The compensation part fascinates me. T

o me Evan is magical and wonderful and I love him to death.”

Bulifant’s conversation is sprinkled with sweet and simple stories about the boy she loves.  One time at L.A.’s Getty Museum, she said, Bulifant and Evan were throwing quarters into a fountain to make a wish

“I wish you would always love me,” said Evan.

“I wish you would always love me,” she said.

“LaLa, that’s my wish!”

Bulifant said she was concerned about Evan’s months before his first birthday.

“I remember Christmas, 2002 (age seven months). I was bathing him in the sink, and trying to get him to giggle and respond to me, but he seemed detached. My family was a little concerned but I didn’t say anything to Jenny because I know children develop at different times. But I was concerned.”

And then there was the incident in the park, another example of how difficult it is to see autism in a loved one.

“We took him to the park, and he started running away from us. We called, but he didn’t even turn around. We wondered if his hearing was impaired,” sh

e says. “That didn’t seem right. So I was testing him in the car seat on the way home. ‘Where is your nose? Where are your ears?’ I asked Evan. He didn’t respond, and I wondered what was going on. Then, when we pulled up in the driveway, Evan suddenly pointed

to h

is mouth and said ‘mouth’, and then he pointed to his ears and said ‘ears.’ It was like he was saying ‘Silly gramma, I know where my mouth and my ears are!’”

Joyce has been active in dyslexia education and advocacy for years, and she called on her research contacts for help. “By the time Evan was 18 months old, I was convinced he had autism,” she says.

Bulifant was wary of approaching McCarthy, who had written two books by that time that made it clear she didn’t appreciate parenting advice from others.

“She wrote ‘I don’t want anyone telling me what to do as a mother,’” says Bulifant. “I was trying to be a good mother-in-law and a good grandmother at the same time. I don’t think I even said anything to John. Everything I read pointed to autism.”

One day, while John was off directing in North Carolina, and Bulifant was staying at Jenny’s Los Angeles home, the “Good Grandmother” spoke up, and asked the nanny about Evan’s development. The nanny reacted defensively.

“I want to ask you something. Have you noticed that Evan doesn’t always connect with me?“ asked Bulifant.

“Jenny is a wonderful mother and he always connects with me.”

“He does watch a lot of television, ” said Bulifant, “and I’m wondering if that means he’s not used to interacting.”

“Evan is fine and always interacts with me. “

Bulifant retreated. “I thought maybe I was just me being a silly grandmother.”

She and her husband left the house for a few hours, and when they came back nobody was home.

“I was terrified that something had happened to Evan.” Then John called, and said that Jenny was “very upset “about the conversation with the nanny.

“You just can’t say anything about Evan,” John continued. “She gets very upset.” He said McCarthy would not come back home until Bulifant and her husband left the house.

Which they did.

Back home, Bulifant wrote a letter of apology to McCarthy. “Jenny wrote back saying ‘You shouldn’t have said anything to the nanny. You should have said it to me.’ And she was right, I should have. I was just afraid. I didn’t want to be the interfering mother-in-law.

“It was very wrong, and that is something I have to live with,” says Bulifant.

McCarthy has told a similar story:

Others had noticed something different about Evan, too. “My mother-in-law said, ‘He doesn’t really show affection,’ and I threw her out of the house,” Jenny says. “I went to a play gym, and the woman [there] said, ‘Does your son have a brain problem?’ … [I said], ‘How dare you say something about my child? I love him. He’s perfect. You can’t say that about a child.’ I just had no idea.”

Bulifant says that after being “thrown out of the house,” she and McCarthy have only spoken a few times, and for the last two years have communicated only through occasional texts.

Seizures and celebrity

Evan’s autism, and Bulifant’s collision with McCarthy’s “strong personality” created another issue. It’s what she calls her “moral problem” for not speaking up sooner about McCarthy’s well-publicized anti-vaccine views. “I know enough about Evan that if I spoke up sooner, more kids would be vaccinated, and fewer would have died or gotten very sick. We’ve seen cases of measles in Texas, and whooping cough killed ten children in California. It breaks my heart. That’s the biggest moral issue in my whole life,” she says.

Vaccines are at the center of McCarthy’s shifting narrative. In one version she says “the soul was gone from Evan’s eyes” shortly after the boy’s MMR vaccine. Here is what she told Oprah in September, 2007:

“Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.”

McCarthy’s narrative also includes two seizure episodes suffered by Evan, leading to an autism diagnosis. In Belly Laughs, she wrote Evan was diagnosed with a febrile seizure at 2 ½, and three weeks later, he suffered seizures which led to a cardiac arrest, and a diagnosis of epilepsy. By this telling, stereotypical autistic behaviors followed.

Bulifant says the first seizure came in the spring of 2004. Oddly, the news triggered in her a sense of relief.

“I knew that seizures are associated with autism, and that Evan would finally get the diagnosis he needed and finally get help. I wasn’t alarmed.”

The second seizure occurred the evening before Easter Sunday, in Bulifant’s home. “I had an Easter basket for Evan,” she says.

“It was the night before Easter. Evan was so tired that he fell into my arms. I laid him on his bed and took off his shoes and when I looked at him I saw his little eyes rolled into the back of his head. I yelled for John to come quickly. We called 911. John held Evan’s hand and said ‘Don’t worry, you are in a safe place.”

Paramedics arrived. “Jenny was a mess. I now know what ‘wringing you hands mean’, because that’s what I was doing.” The EMTs “bagged” the boy because his breathing was shallow, says Bulifant, then took him to the local emergency room. Jenny rode in the ambulance. Anxious hours followed in the waiting room while doctors stabilized Evan and then allowed family to visit.

Evan’s first words were “Look at that air conditioning vent.”

Jenny and John left Palm Springs with Evan and drove straight to Cedars Sinai Hospital in LA, where he was diagnosed with epilepsy. Joyce felt like screaming – “No, it’s autism!” She had had enough.

“I said to John ‘I now insist that you go to UCLA to see a neurologist.’” By McCarthy’s telling, it took the neurologist 20 minutes to arrive at a diagnosis.

A September, 2007 People Magazine article is typical of how McCarthy tells the story:

This was another seizure, she thought, “but this one is different. He’s not convulsing.” Instead, “foam was coming out of his mouth, (and) and after a few minutes, I felt his heart stop,” she said.

When the paramedics arrived, she told them about Evan’s heart. “They looked at me like I was crazy. I don’t know why,” she said. Only, as they discovered for themselves, the child’s heart was no longer beating, so they administered CPR.

“Why, God? Why me … Why? Why? Why?” McCarthy recalled thinking in those desperate moments, but then, she said, an inner voice came over her. “Everything’s going to come out okay.”

Because there was no pediatric hospital near her parents’ home, Evan and McCarthy drove three hours back to Los Angeles, during which time Evan suffered several more seizures.

Dramatic effect

Another unfortunate dimension to McCarthy’s assault on children’s health is her endorsement of unproven, costly, and potentially harmful alternative therapies for autism. She is front and center at the annual AutismOne conference, where speakers have recommended bleach enemas and chemical castration. Her charitable foundation, Generation Rescue, actively promotes  “a wealth of biomedical therapies that treat the underlying issues of autism inside the body.” These include chelation, hyperbaric oxygen, anti-fungals, anti-virals, and cannabis.

When asked what she thinks of the autism cure industry that Jenny has captained, Bulifant demurs. “I think there is value in eating right and exercise for all children,” she says, her voice trailing off.

But what about telling autistic children they are vaccine injured, or that the soul has been sucked from their eyes? Jenny and her angry mob, as she has called her followers, regularly describe their children as train wrecks, zombies, and worse.

“Jenny says things for dramatic effect,” says Bulifant “I don’t understand that type of thinking. Evan is incredible. One of our favorite things to do is to go looking for lizards. He spots them where I can never see them. I ask him ‘How did you even begin to see that?’”

Still, Bulifant doesn’t hesitate to describe McCarthy as “a very good mother, very caring and trying to do the best for Evan,” adding “I don’t know why she says those things.” She describes her son as good father, and regrets how John has been portrayed as distant and uncaring.

“John never spoke up when Jenny said unkind things about him. I asked him why, and he said it would turn into another ‘Hollywood he said – she said’, and that he wanted to be a gentleman about it, and didn’t want to hurt Evan.”

Does she worry that Evan may one day think he lost his soul to autism?

“I hope that Evan never realizes the things have been said about him. I just don’t want him to ever be hurt. I don’t know if he will ever realize what has been said about him. I hope not.”

Bulifant tries to expose her magical grandson to the arts whenever possible. “I took him to see Billy Elliot, and he loved that. His little mind is working all the time. ”But those bonding opportunities have dwindled since McCarthy moved to the Chicago suburb of Geneva last year. Now, Bulifant watches The View to see new pictures of Evan, and to hear the latest stories.

She says Jenny is doing well on The View.

_____________________

Update from Joyce Bulifant:
I understand and have great empathy for parents of autistic children who want to know the reason for their children’s autism. They understandably latch onto anything they can find as a reason. That might be what Jenny did when Dr. Wakefield gave incorrect information about vaccines. I don’t think she did this maliciously. She just needed a reason.
If people know Evan showed signs of autism before his MMR vaccine, parents wouldn’t be afraid to vaccinate their children, thereby saving lives and much suffering.

Celebrities and seizures: Evan’s grandmother speaks out

12 Jan

Jenny McCarthy is the face of vaccine rejectionism in America. The story she tells of how her son, Evan, became autistic after his MMR shot is arguably the origin myth for the anti-vaccine movement, and the legions of “Warrior
Mothers
” who follow her. Now, a competing narrative from someone else close to Evan calls the myth into question. “I have such tremendous guilt for not speaking up when I knew something wasn’t right,” says Joyce Bulifant, Evan’s paternal grandmother.

“But I was afraid of Jenny, and didn’t want to be the interfering mother-in-law. I was more concerned about me than taking care of Evan.” She agreed to speak with AutismNewsBeat.

McCarthy’s many critics have pointed to her numerous contradictions. She told Oprah Winfrey, for example, and there is “no doubt in my mind” that the MMR vaccine caused her son Evan’s autism. But she has also written that Evan showed signs of delay by six months – one year before the shot. “I don’t think she’s very fond of me, but I love her because she is Evan’s mother. It makes me sad that we don’t have a true relationship,” says Bulifant. “That makes me very sad.”

- more at
autismnewsbeat.com

No, the thimerosal in the flu vaccine does not explain why autism rates did not go down

6 Oct

Surprisingly enough, there are still people promoting the idea that the rise in autism diagnoses observed over the last decades was caused by thimerosal in vaccines. The original argument was this–vaccines were added to the vaccine schedule in the 1990′s and with them the infant exposure to thimerosal increased. Concurrent with this rise in infant thimerosal exposure was a rise in autism diagnoses. Add to this a poorly concocted argument that autism resembles mercury intoxication and you have the basis for the mercury hypothesis.

Thimerosal was phased out of infant vaccines over 10 years ago. Thus, if the thimerosal hypothesis were true, reported autism rates should be declining by now. As far back as 2005 David Kirby (whose book “Evidence of Harm” played a major role in promoting the mercury hypothesis) acknowledged this point in a statement

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

It’s 2013. Autism rates in California have not declined. Not in Special Education. Not in the CDDS roles. And, yes, we are six years past the 2007 deadline that David Kirby gave us.

To be specific, let’s use the same method that David Kirby and others used to claim a thimerosal induced autism epidemic in the 1990′s (namely the California DDS client count–which not a good method, by the way). Autism “rates” have gone up by over 150% since thimerosal was phased out of infant vaccines. The age 3-5 bracket had about 4000 children in 2003 and is currently over 10,000.

CDDS 3-5

So we have more kids in California receiving services under the autism label than when thimerosal was in vaccines.

This is but one in a huge list of reasons why the thimerosal hypothesis doesn’t work.

But let’s go back in time a bit. Not so long ago one would hear proposals that we go back to the vaccine schedule of the early 1980′s when, it is claimed, the autism rate was 1 in 10,000. Fewer vaccines, less thimerosal, less autism. So goes the logic.

Generation Rescue, in fact, used to recommend the 1983 schedule as one of their alternative schedules

Turn back the clock
Comment: This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”

Does it make sense to go back to the 1983 schedule? No. Why? OK a lot of reasons, but let’s focus on the fact that infants were exposed to more thimerosal in the 1980′s than today. Infant vaccines have no or only trace amounts of thimerosal.  So if thimerosal were the (or even a single) primary cause of autism risk, we would see autism rates lower today. To not only 1990′s levels, but to something like 1980′s reported levels. Assuming that the reported rates in the 1980′s were an accurate count of how many autistics there were then (a bad assumption but it’s the one they use).

To recap–Infant thimerosal exposure from vaccines peaked at nearly 200 micrograms in the 1990′s, up from about 100 micrograms in the 1980′s and is now less than 10 micrograms. And autism rates have not declined at all. Much less to 1980′s levels.

Once anyone says this the instant answer is that there is still thimerosal in some influenza vaccines. This, they say, is why autism rates have not declined. (note that thimerosal containing vaccines, including influenza vaccines, are banned in California for infants and pregnant women…and autism “rates” have continued to climb here).  

For completeness sake, let’s consider a kid who gets the maximum exposure to thimerosal from vaccines. I.e. a non California kid.  A kid who turns 6 months (the earliest age they will give a flu vaccine to a kid) during the flu season.  That kid will get 2 vaccines in the first year (6 and 7 months) then another influenza vaccine each year thereafter. Each with 25 micrograms of mercury from thimerosal. How does the thimerosal exposure compare to the 1983 schedule?  Take a look for yourself (exposures in micrograms of mercury from thimerosal):

1983 schedule 2013 schedule
DPT Inluenza
2 months 25
4 months 25
6 months 25 25
7 months 25
Total by 1 year 75 50
18 months 25 25
Total by 2 years 100 75
30 Months 25
Total by 3 years 100 100

So by age 3, the exposures are the same.  Except that the kid of today gets the thimerosal later and more spread out over time.  As an aside–most people who talk about the rise in thimerosal exposure during the 1990′s neglect to point out that the cumulative exposure in the 1980′s was already 100 micrograms. I.e. the “safe” level was significant.

If thimerosal were the driving force behind the rise in autism diagnoses, we should be back to 1983 levels, misrepresented by those claiming an epidemic as 1 in 10,000.  Instead we are at 1-2%.  The “rates” didn’t go down.

By this point the proponents of thimerosal are basically screaming, “you are forgetting the vaccines recommended to pregnant women!” No, I just put that off until now.  Sure, the influenza vaccine is recommended for pregnant women, but as the CDC notes:

Prior to 2009, influenza vaccination levels among pregnant women were generally low (~15%) (5,9).

So, from about 2000 to 2009 there wasn’t a big increase (or even a large part of the population) getting influenza vaccines while pregnant, nor were their children getting exposures higher than those in the 1983 schedule.

Take a look at that graph for California administrative autism prevalence again. Between 2002 (after the drawdown of thimerosal in vaccines) and 2012 the autism count doubled. Thimerosal exposure was down. A lot. Below 1990′s “epidemic” levels. Back to the 1983 “worked for kids then” levels. But autism “rates” continue to climb.

The people still pushing the idea that thimerosal is a (or even the) primary cause of autism are not unintelligent. We are talking about college educated people. Ivy league schools. A former journalist, an intellectual property expert and more. There is no math above. It’s all quite simple and straightforward. It uses the exact same logic and methodology they used to promote the idea that mercury causes autism. This is where intellectual honesty and basic integrity should kick in and get people to suck it up, admit their mistakes and start repairing the harm they have caused.

I’m not holding my breath.

By Matt Carey

Jenny McCarthy, shilling for big tobacco

10 Aug

Not my usual style for an article title, I know, but I couldn’t think of any other way to say this.  Jenny McCarthy is now advertising for Blu e-cigarettes. Blu is owned by Lorillard, a major tobacco company.

“All the fun and none of the guilt of having a cigarette”, she says in one video. Yes, children, smoking is fun. And sexy.  Smoke an e-cigarette and you can get a date.

Fun and sexy.  Anyone else feel like we are watching an episode of Mad Men (a show about advertising in the 1960′s)?

image

After her stance on vaccines, Jenny McCarthy wouldn’t promote something that is toxic, right? Of course the health aspects have been tested, right?

Here’s a bit from the Blu FAQ.

Is blu better for me than traditional cigarettes?

blu liquid is made in the U.S. with domestic and imported ingredients by Johnson Creek Enterprises in Hartland Wisconsin; we maintain an organization that inspects product lines at all facilities daily. blu simulates the smoking experience without the tobacco smoke, ash and smell associated with traditional tobacco cigarettes. blu should not be used as a quit smoking device as it has not been approved by the FDA as a cessation device. blu eCigs are not a smoking cessation product and have not been evaluated by the Food and Drug Administration, nor are they intended to treat, prevent or cure any disease or condition.

Did you catch where they address the question of whether the health risks are reduced in e-cigarettes? That’s right, they didn’t. They didn’t point out that there are no safety studies.  You know, long term health outcomes of the sort that Jenny McCarthy says are lacking in vaccine research making such research in her view — yes — tobacco science.

What’s in the “smoke juice” used in Blu? I didn’t find it easily on their website, but here’s what the manufacturer of the liquid says

Johnson Creek Original Smoke Juice is happy to furnish our ingredient list! In fact, we list our ingredients right on the bottle. USP Grade Propylene Glycol (not in Red Oak Smoke Juice Recipe) USP Grade Vegetable Glycerin USP Grade Glycerol USP Grade Deionized water USP Grade Nicotine (except in Zero Nicotine recipe) Natural Flavors Artificial flavors USP Grade Citric Acid

Propylene Glycol“. That’s a form of antifreeze. A form that has been approved by the FDA for some food uses. Ms. McCarthy and her team falsely claimed that vaccines contain “antifreeze”. It’s scary in vaccines but OK in an e-cigarette. Is propylene glycol scary? No. But there is heavy irony in her promoting a product using an antifreeze after using this term (falsely) as a scare tactic about vaccines.

Edit to add: The Blu website does include the ingredients and Propylene Glycol isn’t in them.

Ingredients: blu™ flavor cartridges are propylene glycol-free with six (6) key ingredients: distilled water, nicotine (when applicable), FCC grade vegetable glycerin, natural flavors, artificial flavors, and citric acid.

I’m so glad that they use high grade (USP Grade) nicotine. Only the best, right?

Here’s the proposition 65 warning on the Blu website;

| CALIFORNIA PROPOSITION 65 – Warning: This product contains nicotine, a chemical known to the state of California to cause birth defects or other reproductive harm.

I seem to recall Jenny McCarthy telling the story of how she locked herself in a hotel room so she could quit smoking when she learned she was pregnant. She believed that tobacco ingredients were harmful then. Now she’s selling a nicotine delivery system.

Jenny MCarthy is not new to promoting toxins. Back in her vaccine campaign heyday she touted the benefits of botox. In 2008 she only got a little bit (every two months). Now she’s “Team Botox“.

I will say, her move to promote e-cigarettes was unexpected. Which is different from saying I’m surprised. If someone had said, “do you think Jenny McCarthy would accept money to promote an e-cigarette nicotine delivery system”, I’d have said yes. Jenny McCarthy may not be consistent on her stories and beliefs, but she is consistent in promoting Jenny McCarthy and taking opportunities to make money.


By Matt Carey

Note–I posted an early draft of this article which contains errors. The original paragraph is below

“Propylene Glycol”. That would be the same substance used in vaccines that Ms. McCarthy and her team mislabelled “antifreeze”. It’s scary in vaccines but OK in an e-cigarette. Which do you think contains the greater exposure? (Hint, infants don’t carry packs of vaccines every day). Is propylene glycol scary? No. But there is heavy irony in her promoting a product using it after using this substance as a scare tactic about vaccines.

Jenny McCarthy angling for a spot on The View?

15 Jul

I don’t spend much time following celebrities. Jenny McCarthy was, for a time, an exception. She became the number one spokesperson for the idea that vaccines cause autism as well as for unproven and sometimes dangerous “therapies” for autism. She made a lot of money from autism, autism kept her name in the press and, as the money dried up, Ms. McCarthy quieted down on the topics that only a short time before she was so passionate about. Jenny McCarthy now makes news for topic like, “Jenny McCarthy ‘dating’ Donnie Wahlberg“.

New reports recently came out that Jenny McCarthy is being considered for a spot on the TV show “The View”. I saw a number of these sorts of news stories before I cancelled my news alerts. “Jenny McCarthy in talks with….for a job” They struck me as publicity and trial balloons. Attempts to get buzz going to help get the job.

If Jenny McCarthy’s publicity team are floating this as a trial balloon, they should have known the response they would get:

U.S. News and World Report: Jenny McCarthy’s Pseudoscience Has No Place on ‘The View

Slate: The View of Jenny McCarthy

Salon: Don’t put Jenny McCarthy on “The View” The “warrior mother” is dangerous for television

Atlantic: Destabilizing the Jenny McCarthy Public-Health Industrial Complex

Most discussions focus on Jenny McCarthy’s views on vaccines. She adheres to the idea that vaccines cause autism. It’s good to point out this stance but, as I’ll discuss below, I personally question why The View would be considering Jenny McCarthy given her unprofessional attitude and lack of integrity in regards to her visits on The View.

The vaccine stance has been a bit of a liability for Ms. McCarthy and her organization (Generation Rescue). They have toned down their message a great deal over recent years. Back at the time when Generation Rescue was founded, they were very upfront:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, and many other developmental delays are all misdiagnoses for mercury poisoning.

With the number 1 reason for “How was my child poisoned” being thimerosal in vaccines.

The founder of Jenny McCarthy’s autism charity famously wrote once:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

Generation Rescue both before and since Jenny McCarthy has had a focus on various “cures” for autism. They range from relatively harmless (homeopathy) to dangerous and clearly ill founded (Lupron), promoted at their parent conventions like AutismOne.

Jenny McCarthy not only promotes subjecting disabled children to dangerous therapies, she attacks those parents who don’t accept her advice in this regard.

What’s very interesting with the possible gig on The View is the fact that Jenny McCarthy has a very checkered past with that show. In her first autism book tour, the one person who had the guts to challenge Jenny McCarthy was Barbara Walters on The View. Jenny McCarthy was so angered by this that she reportedly told a rally of her supporters exactly where Barbara Walters could “stick her microphone”. (On a local autism news group, when some people proposed putting video of this event on YouTube they were discouraged from doing so. Even then people realized this was not a good move by Ms. McCarthy.)

In a later book, Jenny McCarthy told the story of her confrontation with Barbara Walters on The View, making herself into a brave “warrior” mom. Only, the story that she gave in the book was very different from the version she gave in a televised interview. In other words, at least one of the stories appears fabricated.

She also posited that Barbara Walters was jealous of Jenny McCarthy and that was the reason why Ms. Walters challenged her. Ms. McCarthy even “forgave” Ms. Walters for the incident. Barbara Walters acted like a journalist and asked Jenny McCarthy to back up her statements. Jenny McCarthy slammed Ms. Walters publicly and quite rudely. And Jenny McCarthy forgave Ms. Walters.

Seemed at the time, and still does, that Ms. McCarthy should have been apologizing, not forgiving.

In the time between the incident on The View and Ms. McCarthy offering “forgiveness”, Ms. Walters had published her biography. In it Ms. Walters disclosed that her sister was intellectually disabled. Jenny McCarthy then “understood” that Ms. Walters was jealous of the fact that she had recovered her son, while Ms. Walters’s sister did not have that opportunity. Forgiveness with a side order of condescension.

An interesting point in the “forgiveness” story. Jenny McCarthy didn’t offer forgiveness when Ms. Walters made the disclosure in her biography. No, Ms. McCarthy waited four months until her own book tour to make the statement. It doesn’t strike this observer as anything beyond a cheap publicity stunt by Ms. McCarthy.

Another interesting point is that it has since been reported that Jenny McCarthy’s “recovered” son needs a $100,000 per year school. So, tales of “forgiveness” because she had recovered her kid while Ms. Walters’s sister remained disabled her whole life fall rather flat.

I did find it interesting that when Jenny McCarthy returned years later to The View for another book tour, it was on a day when Barbara Walters was not present.

Barbara Walters is still active onscreen and behind the scenes at The View. Ms. Walters is a true pioneer of journalism. She didn’t last this long without a very thick skin, so I doubt any of the childish antics from Jenny McCarthy bother her personally. On the other hand, Ms. Walters has been able to see first hand how Jenny McCarthy puts integrity aside in favor of self promotion.

The View is not the sort of hard journalism that is the backbone of Ms. Walters’ legacy. But, one does wonder why Ms. Walters (co-producer and co-owner of The View) would take on Ms. McCarthy. Jenny McCarthy is not and never will be on par with Barbara Walters. Few of us are. But bringing Jenny McCarthy into The View would cheapen, just a bit, a lifetime of hard work and excellence by Ms. Walters.


By Matt Carey

Why does Jenny McCarthy need Miss Montana?

16 May

From the bottom of the ocean
To the mountains on the moon
Won’t you please come to Chicago
No one else can take your place

-Graham Nash, “Chicago”

* * *

The first autistic Miss America contestant is a cheerful 19-year-old with heart-breaking beauty and a refreshing message. She celebrates her autism, telling reporters and talk show hosts that “Being on the spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason,” and “It’s amazing how people don’t accept other people just because they’re different. Being different is not something to look down on, but to be embraced. People need to understand.”

She once told Jeff Probst “There is nothing wrong with being autistic,” and “My autism doesn’t define who I am, I define my autism.”

So why has Alexis Wineman accepted Jenny McCarthy’s invitation to join a “celebrity panel” at a notorious anti-vaccine conference, breaking gluten-free bread with people who compare autism to a death sentence, and something to be despised? One possible answer can be found in her interview published on Disability Scoop last October:

‘Socializing with my classmates, even when I wanted to, was awkward to say the least. I wouldn’t get their jokes half the time. I took everything so literally,’ she told the site.

Here’s what Alexis posted on her Facebook page in January, after receiving a phone call from McCarthy:

Could it be that Alexis is following mean girl McCarthy into the lavatory for a humiliating makeover? Does she literally believe that autistic children can be “rescued” with bleach enemas, chelation, and chemical castration, all of which are “treatments” promoted by other invited speakers the AutismOne conference?

Wineman grew up in Cut Bank, Montana, one square mile of treeless plain and 2,800 hopeful souls. After second grade, Alexis’s twin sister, Amanda skipped ahead into fourth, but not Alexis. “That’s enough to make anyone feel dumb. But I got called “retarded” a lot. I really hate that word,” Alexis told Glamour Magazine. Her behavior deteriorated.

“The meltdowns lasted hours and became more frequent,” says her mother, Kim Butterworth. “We’d have to grab and hold her; she’d be as stiff as a board. It was scary. And she started melting down at school. I’d get the call: ‘We’re having a problem.’”

At age 11 she was diagnosed with PDD-NOS, after the family consulted their pastor and a therapist. “I felt so alone growing up, and I still do at times,” she told a conference on autism at the Montana State University Billings last fall. “Nobody understood what I was going through. I separated myself from my classmates and spent most of my time alone. I stayed quiet to hide my speech problems. Due to these overwhelming and daily struggles, I looked at myself as a punching bag for others, and a burden to my family.”

Her turnaround came in high school, where Alexis ran cross country, joined the drama club, and became a cheerleader. At 18, she entered the Miss Montana contest and won.

Alexis Wineman

Alexis wears her celebrity well. “We cannot cure what is not a sickness,” Miss Montana said in the video shown at the pageant. “But we can begin to understand autism, and help those with the condition to unlock the potential that lies within all of us.”

McCarthy and her business partners disagree. The AutismOne conference is a veritable trade show of unproven and questionable autism “cures”, where the hiss of hyperbaric oxygen chambers lures the credulous, and Mr. Andrew Wakefield tells starry-eyed mothers that “recovery is possible.”

So why did McCarthy reach out to Alexis? Could the invitation be part of McCarthy’s 12-step anger recovery program? The nursing school drop out and ex-MTV host is desperate to shed her anti-vaccine past, which means dissing the “angry mob” she once bragged about. She told the AP in January that she hasn’t publicly commented on vaccines in four years (it was more like two years, but oh well). Her 2011 AutismOne keynote address barely mentioned vaccines. In her 2012 speech, she was introduced by a plaintiff’s attorney who told parents “the claim that mercury doesn’t cause autism is a lie,” but McCarthy herself stayed away from the V word. Meanwhile, when she speaks of Generation Rescue (“my foundation!”), she stresses assistance to parents.

All of which raises (not begs) a serious question: Is the anti-vaccine movement growing up? Can the acceptance-and-accommodation virus find willing hosts in McCarthy’s mob? Can Alexis Wineman from Cut Bank, Montana, attract enough autism parents, and generate enough buzz, to turn Generation Rescue into a responsible and respected advocacy group?

Does McCarthy need Miss Montana? Or is the invitation as dishonest and manipulative as it appears?

 

Cross-posted at AutismNewsBeat.com

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