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Parents vs. the Science? Ask Geraldine Dawson and Autism Speaks.

Reach out By J.B. Handley

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.

My hope comes from a letter, written almost a year ago, that an AoA reader pointed out to me. A letter buried in the feedback to the National Vaccine Advisory Committee that I never noticed and have been unable to find anywhere online, except buried in a lengthy pdf document (HERE). So, for the first time I know of, the letter, written by Autism Speaks Chief Science Officer Geraldine Dawson, is printed below in its entirety so it can be found on the web.

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.” 

Appendix: complete letter from Autism Speaks to the NVAC

January 25, 2009

National Vaccine Advisory Committee
National Vaccine Program Office
U.S. Department of Health and Human Services
200 Independence Avenue SW, Room 443‐H
Washington, DC 20201
 
Dear Members of the National Vaccine Advisory Committee:
 
This letter concerns the Center for Disease Control and Prevention’s (CDC) Immunization Safety Office (ISO) draft scientific agenda that identifies vaccine safety issues for scientific study over the next five years. We understand that the draft agenda is currently being reviewed by the National Vaccine Advisory Committee (NVAC), which  is responsible for coordinating and ensuring collaboration among the Federal agencies involved in vaccine and immunization activities, including the National Institutes of Health. The committee has requested input from community stakeholders in three broad areas: (1) concerns about vaccines and immunization safety, (2) comments on what values and factors are considered most important in prioritizing scientific research, and (3) what scientific issues should be included in the ISO scientific agenda. We will address each of these areas below.
 
Concerns about vaccines and immunization safety
 
As the nation’s largest autism advocacy organization whose mission is to promote autism awareness, increase services, and fund biomedical research on the causes, prevention, treatments, and cure for autism, Autism Speaks has a strong stake in the priorities set forth in the ISO scientific agenda on vaccine research. 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. Indeed, recent research suggests that approximately 28% of parents in the general population feel doubtful about vaccines, with close to 20% choosing to delay or refuse vaccinations for their child (Gust et al., Pediatrics, 2008). The percentage of parents who are delaying or refusing to vaccinate their children means that the U.S. is alarmingly below the recommended 85‐90% “herd immunity” levels that are an important component of protecting our society against communicable diseases.

As outlined in Autism Speaks’ policy statement posted on our website (see
http://www.autismspeaks.org/policy_statements.php), we are “committed to the health and well‐being of all children. As such, we support the programs that ensure the public health, including an effective and safe immunization program designed to prevent major diseases.” 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. Studies reveal that the key issue identified as contributing to parental willingness to have their child vaccinated is having a trusting relationship with the medical community, including their own physician (Benin et al., Pediatrics, 2006). Autism Speaks’ position is that the most effective means of establishing trust between the general public and the medical community is to directly and immediately address the on‐going questions that parents have regarding the safety of vaccines. Even though studies addressing safety require time and resources, the willingness of the government to quickly address these questions will install a sense of trust, respect, collaboration, and transparency. 
 
Values and factors considered most important in prioritizing scientific research
 
We believe that the question of whether immunization is associated with an increased risk for ASD is of extremely high priority. We reference here the criteria with which the CDC itself establishes priorities for research, as described in the draft scientific agenda: 
 
Criteria for prioritization (see pg. 42, CDC ISO draft scientific agenda):
 
1. Clinical severity of the adverse event in terms of seriousness and duration. 

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). 
 
 2. Biological plausibility
 
The causes of ASD remain poorly understood, but it is generally agreed that both genetic and environmental factors play a role in the etiology of ASD. It is well established that there are connections between the immune system and brain development, with neuroimmune interactions persisting throughout the lifespan. 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. Among the immune abnormalities found to be associated with ASD are abnormal cytokine profiles, decreased lymphocyte numbers, decreased T cell mitogen response, and an imbalance of immunoglobulin levels (Ashwood et al., J. Leukocyte Biology, 2006;). Abnormalities in the expression of immune‐related molecules such as cytokines in the brain and cerebral spinal fluid have been documented in individuals with ASD, suggesting that ASD is associated with chronic neuroinflammation (Vargus et al. Annuls of Neurology, 2005; Zimmerman et al. Pediatric Neurology, 2005). Other studies highlight the impact of maternal immune challenge on the fetal brain and potential pathological consequences on brain and behavioral development (Patterson, Behavioral Brain Research, 2008). 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 (Pessah et al., Neurotoxicology, 2008).  The question of whether the genetic and immune vulnerabilities contribute to increased risk for adverse effects of vaccines, including fever, seizures, and ASD, has not been well studied.

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.
 
3. Population exposed to the vaccine
  
The vaccines of concern are recommended for all children below the age of two years. 

4. Level of public concern
 
Studies show that when parents are unsure or refuse to vaccinate, the most common reason for parents’ doubt about vaccines is a concern about safety and adverse effects (Gust et al., Pediatrics, 2008).  Cases of measles in England and Walesa, where there is a high level of parental concern about the safety of the MMR vaccine, are the highest in 13 years (Kmietosicz, British Medical Journal, 2008). Clearly, it is crucial that parental concerns are addressed so that confidence in the safety of vaccines can be increased.

5. Feasibility of designing and implementing study
 
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 (e.g. Guerra et al., Pediatrics, 2009). Studies of infant siblings of children with ASD, who are at higher risk for developing the disorder, offer an opportunity for studying gene‐environment interactions. The National Children’s Study is examining the influences of a wide range of environmental and genetic factors on risk for health outcomes. This resource can provide another means for studying whether vaccines are associated with increased risk for neurodevelopmental disorders in subsamples of the general population.
 
6. Adequacy of current scientific knowledge
 
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. This limits information on non‐acute events, such as neurocognitive sequelae, whose onset may be delayed. Information that is essential for determining background incidence of adverse events is not readily available. The calculation of age‐specific adverse event rates is not possible, for example. It is crucial that the quality of data in VAERS be improved. Specific questions regarding the prevalence of seizures, loss of language, regression, ASD, and other neurocognitive outcomes need to be added. Standard adverse effect recording needs to extend beyond the traditional 4 week time period. This will require improvements in the VAERS infrastructure; currently, less than 20 percent of reports to VAERS are electronic, making data management and analysis difficult. The inclusion of a full family medical history in the VAERS would allow identification of subgroups that may be genetically or medically vulnerable to adverse effects of vaccines. Ideally, collection of biomaterials, including DNA, would allow the VAERS to identify genetically vulnerable subgroups. 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.
 
 7. Potential to influence clinical practice/vaccination policy
 
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. Ideally, by continuing to conduct rigorous scientific research that addresses parents’ ongoing questions about vaccine safety, parents will develop increased confidence in the medical community and vaccines, be more likely to have their child vaccinated, and improve health outcomes for all children. 
 
Scientific issues that we believe should be included in the ISO scientific agenda 
 
The following are questions, many of which are currently included in the ISO scientific agenda, which we view as high priority:
 
1. Is exposure to thimerosal associated with increased risk for ASD?

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.
 
2. Is immunization associated with increased risk for neurological sequelae in children with certain metabolic conditions, including mitochondrial disorders?

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). 
 
3. Is the combination measles, mumps, rubella, varicella (MMRV) vaccine associated with increased risk for febrile seizures and if so, are there other clinically important sequelae? 
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 (Saemundsen et al., Epilepsia, 2008). In February 2008, the Federal Advisory Committee on Immunization Practices reversed its previous position of recommending the MMRV over MMR and Varicella vaccines (CDC, MMWR, 2008). Simultaneous vaccination is not well studied at the time of licensure. As pointed out in the ISO report, under the current infrastructure, prelicensure studies do not assess safety of two unlicensed vaccines administered simultaneously. 
 
4. What are the potentially clinically important outcomes related to post‐immunization fever?

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. 
 
5. What is the relationship between specific rare genetic mutations associated with ASD and risk for serious adverse effects of vaccination?

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. 
 
6. Finally, there are four special populations which we view as high priority for assessing the risk of serious adverse effects of vaccinations: 
 
a. Premature and low birth weight infants. There has been an increase in the number of premature and low birth weight infants in the US. Furthermore, prematurity has been found to be a risk factor for ASD (Limperopoulos et al., Pediatrics, 2008). There is a need to understand the immune response and prevalence and nature of vaccine adverse events after vaccination in infants who were born prematurely or with low birth weight.
 
b. Pregnant women. As noted in the ISO report, pregnant women are usually excluded from vaccine trials and data on vaccine safety during pregnancy are lacking. ACIP recommends that pregnant women routinely get vaccinated from influenza. What are the risks? The offspring of women who experience infection during pregnancy have an increased risk for ASD and schizophrenia (Brown, et al. Archives of General Psychiatry, 2004). Evidence indicates that the maternal immune response, rather than infection of the fetus, is responsible for the increased incidence of schizophrenia and ASD in offspring of mothers who experience infections during pregnancy (Patterson, Neuropsychopharmacology, 2005). The effects of maternal immune activation via influenza vaccination during pregnancy on the offspring of vaccinated women are presently unknown. 
 
c. Children with inborn errors of metabolism. Children with metabolic diseases are at higher risk of health complications from diseases that are prevented by immunizations (Brady, Pediatrics, 2006; Kinsley, Pediatrics, 2006). However, as noted above, 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.
 
d. Infant siblings of children with ASD. Siblings of children with ASD are at much higher risk for ASD than the general population. Estimates of risk rates range from 3‐7%, with recent prospective studies reporting even higher rates (Bryson et al., J. Autism Devel. Disorders, 2007). Are infant siblings at higher risk for adverse effects of vaccination? This question is of great concern to parents of children with ASD; a recent report indicates a disturbing trend of reduced uptake of vaccination in younger siblings of children with ASD (Kuwaik et al., Pediatrics, 2008). Approximately 73% of parents were reported to refuse to vaccinate their younger siblings with the MMR vaccine, for example. Thus, it is crucial that questions regarding the safety of vaccines for younger siblings be addressed. 
 
Autism Speaks believes that a fruitful strategy for moving forward would be to establish a working group comprised of key representatives of the stakeholder, medical, and scientific communities and the federal agencies involved in vaccine safety research. The goal would be to work collaboratively to review and prioritize the scientific questions that need to be addressed in light of the most recent scientific findings and public concerns.  Issues to be addressed include what scientific questions can be feasibly addressed given current knowledge, resources, and infrastructure and what are the additional resources that are needed to address questions of high priority? Discussion and consensus regarding how results of scientific studies should be interpreted and inform future public policy and practice would also be helpful.
 
We greatly appreciate the opportunity to provide input on the CDC ISO draft scientific agenda for vaccine safety research. In this letter, Autism Speaks has described significant concerns and remaining questions about vaccine safety we consider to be most important, not only for the CDC’s scientific agenda, but for the federal government as a whole. The past decade has witnessed increased polarization and diminished respect and trust between the autism parent community and the medical establishment. As a result, families of children with ASD and the general public are suffering the consequences of parents’ lack of confidence in our nation’s vaccine program.  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. 
 
Sincerely,
 
Geraldine Dawson, Ph.D.
Chief Science Officer
Autism Speaks 
 
 
 
 




 

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Geraldine Dawson has just been named a "Rock Star of Science." I'm not sure what that is. It sounds sort of good.

The following “big picture” is essential to the entire discussion involving autism and vaccines. The importance and seriousness of the following is not to be underestimated. (This is an addition to my prior post.)

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. The answer is common sense and simple, and there is no way around this.

Also consider: The vaccines (viruses and bacteria) are altered and unnatural; AND the disease/infection process is fundamentally different as well (via injection). This is all very significant, in keeping with everything else that can be/has been said.Understanding that autism meets the definition of a disintegration and contraction of being and experience is very helpful in understanding, preventing, and treating this disorder. The increasing numbers of vaccines and the rising rates of disorders involving mind/emotion/body are of very serious concern.

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? Also consider, all of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. Life is fragile, as it is delicately and precisely regulated and balanced. Artificially reconfigured/replaced sensory experience (including pollution, toxins, processed foods, television, vaccines, etc., etc.) is making us increasingly unconscious and reactive in various and unpredictable ways. We are becoming more inanimate.

The reconfiguration, replacement, and loss of sensory experience (and feeling) includes toxins, vaccines, lack of exercise, processed foods, television, etc., etc. This is making us increasingly unconscious and reactive in various and unpredictable ways; and this involves sensory processing disorders as well.

Autism is a disintegration, contraction, and detachment of being and experience (including consciousness). This also meets the definition/description of anxiety, depression, cancer, obesity, sleep disorders, and the experience of television. The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? Moreover, all of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function, and worse. We are becoming more inanimate. The natural and integrated extensiveness of being and experience go hand in hand, as the disintegration, contraction, and detachment of being and experience go hand in hand as well.

The great revelation of art (including music) is that the world requires and involves man; although science has been slow to recognize this; for the danger of technology is that it is creating a world of experience that is toxic and foreign to the self where man is neither truly involved nor required. By pervasively and fundamentally changing our various sensory experiences (including the range of feeling thereof), the self’s ability to represent and form a consistent, comprehensive, and relatively extensive approximation of sense is being compromised; whereby sense and feeling [increasingly] cannot be properly experienced, utilized, and understood as the expression and extension of the self’s desire; and it is not only our loss of language that we face. (Consciousness and language involve the ability to represent, form, and experience comprehensive approximations of experience in general; and this includes art and music as well.) The reconfiguration (i.e., disintegration, alteration, reduction, and/or replacement) of sensory experience in general (including range of feeling) is progressively involving a disintegration and contraction of being and experience (including thought). This is evident in (and includes) sleep disorders, depression, anxiety, autism, obesity, and the experience of television. (Clearly, obesity involves a disintegration, contraction, and detachment of being/experience; and it is associated with increased risk of death from all causes.)

Moreover, there is no true difference between what is foreign/unnatural and toxic. Artificially reconfigured sensory experience (including pollution, processed foods, television, etc.) makes the self increasingly unconscious (and reactive) in unpredictable ways. The disintegration, alteration, reduction, and replacement of sensory experience and feeling involve the loss of the instincts; as the self is disconnected and detached from what is natural and truly sustaining. The disintegration and contraction (and this includes detachment) of being and experience go hand in hand. Being and experience are becoming excessively (and increasingly) unconscious and less animate. Finally, in reference to sleep disorders, it is important that dreams involve a fundamental integration and spreading of being and experience at the mid-range of feeling between thought and sense, in conjunction with the natural extensiveness and interactivity of being and experience.

In both depression and anxiety, the emotional disintegration and contraction of being and experience involves increased feeling at the emotional center of the self. In anxiety, this is consistent with excessive concern, the reduction in the desirability of experience, emotional imbalance (or variability), bodily aches and pains (i.e., emotional disintegration), the mind “going blank”, panic attacks (involving a sort of generalized paralysis and loss of experience), etc. Comparatively (and similarly), in depression, there is a contraction, detachment, disintegration, and loss of being and experience that also involves a loss of emotion. The loss of desire in both depression and anxiety involves a significant reduction in the comprehensiveness and consistency of both intention and concern as they relate to experience in general; and this has the dream-like effect of reducing thought, emotion, and memory, including the desirability and totality of experience as well.
------
Vaccines as SIGNIFICANTLY reconfigured/toxic sensory experience:

Here is yet more information as to why the effects of the vaccines (or the reactions by the body thereto) would NOT necessarily be predictable or uniform.

Visually, the universal experience of the body is one of visual transparency (i.e., invisibility). Accordingly, when our bodies are visually distinguishable (or visible), then each of our visible experiences of the body (and of everything else for that matter) must necessarily be different (or unique); and individuals are then visually distinguishable as well. Since all of our bodies are visually transparent (or invisible), each of our bodies (considered individually) must necessarily be different when visible. Since the experience of the body is both visible and invisible, the visible experience of the body is necessarily changing (or inconstant), unique, and finite. The disintegration of the visual experience when an object is close to the eyes is demonstrative of the relationship between visibility and invisibility. The visible appearance of the body (including that of experience in general) is relatively unique, finite, and limited. (This conclusion is also in keeping with the fact that thought and vision are necessarily different.) The thoughtful understanding of the visible is properly understood as variable and finite in relation to the totality of experience, including that of the body.

Thoughts and emotions are differentiated feelings. Our thoughts, emotions, and feelings are largely (or often) indiscernible to others in keeping with the fact that the body is transparent (or invisible inside the eye).

The following translates into a toxic/diseased/damaged body, consistent with a disintegration, contraction, and detachment of being and experience (including consciousness and emotion):

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. The answer is common sense and simple, and there is no way around this.

NOTE: Emotion is manifest (and differentiated) as sensory experience and feeling.

Also, the brain is really thought, and not the visual pictures of the brain. The very words "brain" and "thought" are both thoughts, and they are therefore more closely allied than thought and vision.
------

Sleep Disorders and Autism:

Here is a recent dialogue between myself and Lindsay M. Oberman, Ph.D. on the topic of autism. It is very relevant and important to the discussion at hand.

Hi Lindsay. You are very welcome. You said previously:
"I have heard anecdotally that people with ASD get less sleep, and perhaps that could also explain the increased, but not stable connectivity that we are seeing in the ASD brain."

My reply to her:
Sleep (and dreams) add to the integrated extensiveness of being, experience, and thought, thereby improving attention and memory.
Indeed, dreams make thought more like sensory experience in general, thereby improving both memory and understanding.

The increased connectivity is understood as reducing what would otherwise be the balanced/stable and integrated extensiveness of their thought and experience.
----------

Autism is a disintegration, contraction, and detachment of being, experience, and consciousness.
----------

Toxicity/Disease, Autism, and Memory:

What will it take to understand how serious autism is? Indeed, autism is a disintegration, contraction, and detachment of being, experience, and consciousness.

Moreover, in helping the autistic child, it is important to understand what memory is and does. The problem regarding the impairment/loss of memory in autism is very serious.

The following will provide an expanded and accurate description and understanding of memory that will be of considerable benefit/use:

Memory integrates experience and is necessary for the improved integration of a greater totality of experience; and here lies its connection with the advancement of consciousness. Memory increases (or adds to) the extensiveness, desirability, predictability, and intentionality of experience. Memory is an aid with regard to the extensiveness of intentionality in regard to experience. The loss (or reduction) in both memory and the intentionality of experience that occurs in the dream helps to explain why we are basically (or significantly) without the use of our body therein.

The generally disordered/improper/reduced functioning of memory in autism is of very serious concern.

In follow-up to my last post, the following “big picture” is also essential to this entire discussion on autism and vaccines. The importance and seriousness of the following is not to be underestimated:

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. The answer is common sense and simple, and there is no way around this.

Also consider: The vaccines (viruses and bacteria) are altered and unnatural; AND the disease/infection process is fundamentally different as well (via injection). This is all very significant, in keeping with everything else that can be/has been said.Understanding that autism meets the definition of a disintegration and contraction of being and experience is very helpful in understanding, preventing, and treating this disorder. The increasing numbers of vaccines and the rising rates of disorders involving mind/emotion/body are of very serious concern.

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? Also consider, all of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. Life is fragile, as it is delicately and precisely regulated and balanced. Artificially reconfigured/replaced sensory experience (including pollution, toxins, processed foods, television, vaccines, etc., etc.) is making us increasingly unconscious and reactive in various and unpredictable ways. We are becoming more inanimate.

The reconfiguration, replacement, and loss of sensory experience (and feeling) includes toxins, vaccines, lack of exercise, processed foods, television, etc., etc. This is making us increasingly unconscious and reactive in various and unpredictable ways; and this involves sensory processing disorders as well.

Autism is a disintegration, contraction, and detachment of being and experience (including consciousness). This also meets the definition/description of anxiety, depression, cancer, obesity, sleep disorders, and the experience of television. The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? Moreover, all of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function, and worse. We are becoming more inanimate. The natural and integrated extensiveness of being and experience go hand in hand, as the disintegration, contraction, and detachment of being and experience go hand in hand as well.

The great revelation of art (including music) is that the world requires and involves man; although science has been slow to recognize this; for the danger of technology is that it is creating a world of experience that is toxic and foreign to the self where man is neither truly involved nor required. By pervasively and fundamentally changing our various sensory experiences (including the range of feeling thereof), the self’s ability to represent and form a consistent, comprehensive, and relatively extensive approximation of sense is being compromised; whereby sense and feeling [increasingly] cannot be properly experienced, utilized, and understood as the expression and extension of the self’s desire; and it is not only our loss of language that we face. (Consciousness and language involve the ability to represent, form, and experience comprehensive approximations of experience in general; and this includes art and music as well.) The reconfiguration (i.e., disintegration, alteration, reduction, and/or replacement) of sensory experience in general (including range of feeling) is progressively involving a disintegration and contraction of being and experience (including thought). This is evident in (and includes) sleep disorders, depression, anxiety, autism, obesity, and the experience of television. (Clearly, obesity involves a disintegration, contraction, and detachment of being/experience; and it is associated with increased risk of death from all causes.)

Moreover, there is no true difference between what is foreign/unnatural and toxic. Artificially reconfigured sensory experience (including pollution, processed foods, television, etc.) makes the self increasingly unconscious (and reactive) in unpredictable ways. The disintegration, alteration, reduction, and replacement of sensory experience and feeling involve the loss of the instincts; as the self is disconnected and detached from what is natural and truly sustaining. The disintegration and contraction (and this includes detachment) of being and experience go hand in hand. Being and experience are becoming excessively (and increasingly) unconscious and less animate. Finally, in reference to sleep disorders, it is important that dreams involve a fundamental integration and spreading of being and experience at the mid-range of feeling between thought and sense, in conjunction with the natural extensiveness and interactivity of being and experience.

In both depression and anxiety, the emotional disintegration and contraction of being and experience involves increased feeling at the emotional center of the self. In anxiety, this is consistent with excessive concern, the reduction in the desirability of experience, emotional imbalance (or variability), bodily aches and pains (i.e., emotional disintegration), the mind “going blank”, panic attacks (involving a sort of generalized paralysis and loss of experience), etc. Comparatively (and similarly), in depression, there is a contraction, detachment, disintegration, and loss of being and experience that also involves a loss of emotion. The loss of desire in both depression and anxiety involves a significant reduction in the comprehensiveness and consistency of both intention and concern as they relate to experience in general; and this has the dream-like effect of reducing thought, emotion, and memory, including the desirability and totality of experience as well.
------
Vaccines as SIGNIFICANTLY reconfigured/toxic sensory experience:

Here is yet more information as to why the effects of the vaccines (or the reactions by the body thereto) would NOT necessarily be predictable or uniform.

Visually, the universal experience of the body is one of visual transparency (i.e., invisibility). Accordingly, when our bodies are visually distinguishable (or visible), then each of our visible experiences of the body (and of everything else for that matter) must necessarily be different (or unique); and individuals are then visually distinguishable as well. Since all of our bodies are visually transparent (or invisible), each of our bodies (considered individually) must necessarily be different when visible. Since the experience of the body is both visible and invisible, the visible experience of the body is necessarily changing (or inconstant), unique, and finite. The disintegration of the visual experience when an object is close to the eyes is demonstrative of the relationship between visibility and invisibility. The visible appearance of the body (including that of experience in general) is relatively unique, finite, and limited. (This conclusion is also in keeping with the fact that thought and vision are necessarily different.) The thoughtful understanding of the visible is properly understood as variable and finite in relation to the totality of experience, including that of the body.

Thoughts and emotions are differentiated feelings. Our thoughts, emotions, and feelings are largely (or often) indiscernible to others in keeping with the fact that the body is transparent (or invisible inside the eye).

The following translates into a toxic/diseased/damaged body, consistent with a disintegration, contraction, and detachment of being and experience (including consciousness and emotion):

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. The answer is common sense and simple, and there is no way around this.

NOTE: Emotion is manifest (and differentiated) as sensory experience and feeling.

Also, the brain is really thought, and not the visual pictures of the brain. The very words "brain" and "thought" are both thoughts, and they are therefore more closely allied than thought and vision.
------

Sleep Disorders and Autism:

Here is a recent dialogue between myself and Lindsay M. Oberman, Ph.D. on the topic of autism. It is very relevant and important to the discussion at hand.

Hi Lindsay. You are very welcome. You said previously:
"I have heard anecdotally that people with ASD get less sleep, and perhaps that could also explain the increased, but not stable connectivity that we are seeing in the ASD brain."

My reply to her:
Sleep (and dreams) add to the integrated extensiveness of being, experience, and thought, thereby improving attention and memory.
Indeed, dreams make thought more like sensory experience in general, thereby improving both memory and understanding.

The increased connectivity is understood as reducing what would otherwise be the balanced/stable and integrated extensiveness of their thought and experience.
----------

Autism is a disintegration, contraction, and detachment of being, experience, and consciousness.
----------

Toxicity/Disease, Autism, and Memory:

What will it take to understand how serious autism is? Indeed, autism is a disintegration, contraction, and detachment of being, experience, and consciousness.

Moreover, in helping the autistic child, it is important to understand what memory is and does. The problem regarding the impairment/loss of memory in autism is very serious.

The following will provide an expanded and accurate description and understanding of memory that will be of considerable benefit/use:

Memory integrates experience and is necessary for the improved integration of a greater totality of experience; and here lies its connection with the advancement of consciousness. Memory increases (or adds to) the extensiveness, desirability, predictability, and intentionality of experience. Memory is an aid with regard to the extensiveness of intentionality in regard to experience. The loss (or reduction) in both memory and the intentionality of experience that occurs in the dream helps to explain why we are basically (or significantly) without the use of our body therein.

The generally disordered/improper/reduced functioning of memory in autism is of very serious concern.

Hi Geraldine. The following "big picture" is essential to this entire discussion. Indeed, the importance, seriousness, and significance of the following is not to be underestimated. (Closely consider the following in addition to my prior post please.)

1) A Better Understanding of Vaccines and Autism

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. The answer is common sense and simple, and there is no way around this.

Also consider: The vaccines (viruses and bacteria) are altered and unnatural; AND the disease/infection process is fundamentally different as well (via injection). This is all very significant, in keeping with everything else that can be/has been said.Understanding that autism meets the definition of a disintegration and contraction of being and experience is very helpful in understanding, preventing, and treating this disorder. The increasing numbers of vaccines and the rising rates of disorders involving mind/emotion/body are of very serious concern.

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? Also consider, all of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. Life is fragile, as it is delicately and precisely regulated and balanced. Artificially reconfigured/replaced sensory experience (including pollution, toxins, processed foods, television, vaccines, etc., etc.) is making us increasingly unconscious and reactive in various and unpredictable ways. We are becoming more inanimate.

The reconfiguration, replacement, and loss of sensory experience (and feeling) includes toxins, vaccines, lack of exercise, processed foods, television, etc., etc. This is making us increasingly unconscious and reactive in various and unpredictable ways; and this involves sensory processing disorders as well.

Autism is a disintegration, contraction, and detachment of being and experience (including consciousness). This also meets the definition/description of anxiety, depression, cancer, obesity, sleep disorders, and the experience of television. The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? Moreover, all of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function, and worse. We are becoming more inanimate. The natural and integrated extensiveness of being and experience go hand in hand, as the disintegration, contraction, and detachment of being and experience go hand in hand as well.

The great revelation of art (including music) is that the world requires and involves man; although science has been slow to recognize this; for the danger of technology is that it is creating a world of experience that is toxic and foreign to the self where man is neither truly involved nor required. By pervasively and fundamentally changing our various sensory experiences (including the range of feeling thereof), the self’s ability to represent and form a consistent, comprehensive, and relatively extensive approximation of sense is being compromised; whereby sense and feeling [increasingly] cannot be properly experienced, utilized, and understood as the expression and extension of the self’s desire; and it is not only our loss of language that we face. (Consciousness and language involve the ability to represent, form, and experience comprehensive approximations of experience in general; and this includes art and music as well.) The reconfiguration (i.e., disintegration, alteration, reduction, and/or replacement) of sensory experience in general (including range of feeling) is progressively involving a disintegration and contraction of being and experience (including thought). This is evident in (and includes) sleep disorders, depression, anxiety, autism, obesity, and the experience of television. (Clearly, obesity involves a disintegration, contraction, and detachment of being/experience; and it is associated with increased risk of death from all causes.)

Moreover, there is no true difference between what is foreign/unnatural and toxic. Artificially reconfigured sensory experience (including pollution, processed foods, television, etc.) makes the self increasingly unconscious (and reactive) in unpredictable ways. The disintegration, alteration, reduction, and replacement of sensory experience and feeling involve the loss of the instincts; as the self is disconnected and detached from what is natural and truly sustaining. The disintegration and contraction (and this includes detachment) of being and experience go hand in hand. Being and experience are becoming excessively (and increasingly) unconscious and less animate. Finally, in reference to sleep disorders, it is important that dreams involve a fundamental integration and spreading of being and experience at the mid-range of feeling between thought and sense, in conjunction with the natural extensiveness and interactivity of being and experience.

In both depression and anxiety, the emotional disintegration and contraction of being and experience involves increased feeling at the emotional center of the self. In anxiety, this is consistent with excessive concern, the reduction in the desirability of experience, emotional imbalance (or variability), bodily aches and pains (i.e., emotional disintegration), the mind “going blank”, panic attacks (involving a sort of generalized paralysis and loss of experience), etc. Comparatively (and similarly), in depression, there is a contraction, detachment, disintegration, and loss of being and experience that also involves a loss of emotion. The loss of desire in both depression and anxiety involves a significant reduction in the comprehensiveness and consistency of both intention and concern as they relate to experience in general; and this has the dream-like effect of reducing thought, emotion, and memory, including the desirability and totality of experience as well.

2) Toxicity/Disease, Autism, and Memory

What will it take to understand how serious autism is? Indeed, autism is a disintegration, contraction, and detachment of being, experience, and consciousness.

Moreover, in helping the autistic child, it is important to understand what memory is and does. The problem regarding the impairment/loss of memory in autism is very serious.

The following will provide an expanded and accurate description and understanding of memory that will be of considerable benefit/use:

Memory integrates experience and is necessary for the improved integration of a greater totality of experience; and here lies its connection with the advancement of consciousness. Memory increases (or adds to) the extensiveness, desirability, predictability, and intentionality of experience. Memory is an aid with regard to the extensiveness of intentionality in regard to experience. The loss (or reduction) in both memory and the intentionality of experience that occurs in the dream helps to explain why we are basically (or significantly) without the use of our body therein.

The generally disordered/improper/reduced functioning of memory in autism is of very serious concern.

3) Sleep Disorders and Autism

Here is a recent dialogue between myself and Lindsay M. Oberman, Ph.D. on the topic of autism. It is very relevant and important to the discussion at hand.

Hi Lindsay. You are very welcome. You said previously:
"I have heard anecdotally that people with ASD get less sleep, and perhaps that could also explain the increased, but not stable connectivity that we are seeing in the ASD brain."

My reply to her:
Sleep (and dreams) add to the integrated extensiveness of being, experience, and thought, thereby improving attention and memory.
Indeed, dreams make thought more like sensory experience in general, thereby improving both memory and understanding.

The increased connectivity is understood as reducing what would otherwise be the balanced/stable and integrated extensiveness of their thought and experience.
----------

Autism is a disintegration, contraction, and detachment of being, experience, and consciousness.

4) Vaccines as SIGNIFICANTLY reconfigured/toxic sensory experience

Here is yet more information as to why the effects of the vaccines (or the reactions by the body thereto) would NOT necessarily be predictable or uniform.

Visually, the universal experience of the body is one of visual transparency (i.e., invisibility). Accordingly, when our bodies are visually distinguishable (or visible), then each of our visible experiences of the body (and of everything else for that matter) must necessarily be different (or unique); and individuals are then visually distinguishable as well. Since all of our bodies are visually transparent (or invisible), each of our bodies (considered individually) must necessarily be different when visible. Since the experience of the body is both visible and invisible, the visible experience of the body is necessarily changing (or inconstant), unique, and finite. The disintegration of the visual experience when an object is close to the eyes is demonstrative of the relationship between visibility and invisibility. The visible appearance of the body (including that of experience in general) is relatively unique, finite, and limited. (This conclusion is also in keeping with the fact that thought and vision are necessarily different.) The thoughtful understanding of the visible is properly understood as variable and finite in relation to the totality of experience, including that of the body.

Thoughts and emotions are differentiated feelings. Our thoughts, emotions, and feelings are largely (or often) indiscernible to others in keeping with the fact that the body is transparent (or invisible inside the eye).

The following translates into a toxic/diseased/damaged body, consistent with a disintegration, contraction, and detachment of being and experience (including consciousness and emotion):

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via immune responses/antibodies), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function. The answer is common sense and simple, and there is no way around this.

NOTE: Emotion is manifest (and differentiated) as sensory experience and feeling.

Also, the brain is really thought, and not the visual pictures of the brain. The very words "brain" and "thought" are both thoughts, and they are therefore more closely allied than thought and vision.

The following is essential to understanding the “big picture” and biology of autism.

The fact that autism is a disintegration, contraction, and detachment of being, experience, and consciousness is consistent with toxicity/damage/disorder.

The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via antibodies/immune responses), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function.

Autism also involves a disintegration, contraction, and detachment of memory, feeling, thought, and emotion. Importantly, autism may be usefully understood as involving BIOLOGICAL toxicity/disorder/damage that relates to, involves, or pertains to thought, feeling, and emotion.

Christie,

Like A mom, my son too had a comprehensive genetic screening done through Childrens Hospital Boston. The results of my sons blood tests came back "normal" per the lab report. He even tested negative for autism which was listed among the 60+ conditons they tested for. There are many possible scenarios to explain these behaviors besides attributing it soley to inheritance.

So why do kids regress after a period of normal development? Could it be due to an immune dysfunction, mitchondrial toxicity/dysfunction, enzyme deficiency, metabolic disorder or a purine or urea cycle disorder, environmental stressors or a combination of the above?

It would be helpful if our kids were screened for the aforementioned conditons (at least run a metabolic test) before they received the autism dx which is not the currently case. Knowing the underlying cause could make all the difference in the world to the kids in terms of treatment.

Genetics.. Sigh. We continue to pursue the newest tests for all three girls. We've been doing genetics testing, fully paid by insurance I might add, since 1997. My girls have very pretty chromosomes...

Christie, I can only suggest that you speak to a geneticist/epidemiologist as we did for the correct numbers regarding purely genetic ASD diagnoses.

There is no need for you to speculate about our daughter's lab work: She had an extensive battery of tests, including genetics. All was negative except for very high levels of mercury and elevated testosterone and androgen levels.

Anyone with ASD can get a complete genetic workup and recommendations after the results are in from a geneticist. Their professional association passed guidelines for just that either last year or the year before.

Good luck.

John Gilmore said:

Autism Speaks still has the former worldwide Risperdal marketing manager, Peter Bell, in a key executive position. And as far as I am concerned Mr. Bell has a lot of questions to answer about what he knew, and when, about the side-effects of Risperdal and Janssen's efforts to keep that information from the public.

---------------------

Thanks John for posting this comment. I had no idea Peter Bell had been employed by the Pharmaceutical industry - but it's right there in his Autism Speaks bio- he worked in marketing for McNeil- a member of the Johnson and Johnson family- who happens to also make Risperdal. That makes his comments when Risperdal was approved for autism use in 2006 even more interesting and disturbing considering, as you say, the horrible side effects of that drug. And does that drug make kids with autism more prone to excessive uncontrollable anger that can lead to unimaginable violence? I bet Sky Walker's family and now young Michael Crisafulli's families would like to know that since they both reportedly had been given Risperdal.

Bell seemed quite pleased in 2006 when Risperdal was approved for use in autism.

Quote:

"It signals that the pharmaceutical industry is looking at autism as a future market."


Nov 2006

http://nursing.yale.edu/News/Press/157

Health insurers often limit prescription-drug coverage to uses of medications specified in the FDA's approvals, which define how companies can market a treatment. Previously, risperidone was only approved for use as an antipsychotic and patients with autism did not receive coverage. "Insurance companies had argued that efficacy was not proven," said Peter Bell, president and chief executive officer of Cure Autism Now, an advocacy group which funds autism research. "Now that risperidone is approved for autism, this won't happen."

"Having FDA approval means physicians will have clear instructions on the label for how to use risperidone for autism symptoms. And this means a lot to patients, and their families," said Bell.

And:

Also Nov 2006

http://articles.latimes.com/2006/nov/20/health/he-autismdrug20

According to Peter Bell, president and chief executive of Cure Autism Now, a national organization committed to accelerating the pace of autism research, the approval is "an extremely positive sign."

It signals, Bell said, that the pharmaceutical industry is looking at autism as a future market.

"Risperdal is not going to cure every child, and it's not going be appropriate for all," Bell said, "but when used appropriately it could make a significant difference in a child's life."

This is an amazing letter!!!

Thanks, JB, I too have seen faint glimmers of hope from AS over the past year. I help run a small local non-profit and have often thought AS just got too big too fast. As small as we are, we almost failed a few times due to personalities and agendas that take on a life of their own. I really think AS "got away from" the Wrights - - they had enough money to prevent a collapse, but it will take some time to turn this ship back into an organization that fulfills their original intent. It's a classic mirror of what's going on the autism community at large, I am hopefull reason and truth will prevail.

Stan, what is genetic anymore? Generational vaccines ruin our DNA, Retroviruses like XMRV and bacteria do as well..and then overlay that on IMMUNE genetics, or mother transferred mitochondrial mutations. I think that is the combo of genetic links they should look at...in fact, I wouuld like to offer a thought to a study. If we have anyone now with a grandparent, a parent and a child who have similar biochemistry, or even shadows of autism, why aren't we studying the biological considerations of that? Perhaps we will find subtle mutations. And or, if they were exposed to an area where there were GENERATIONS of mercury exposures, or what have you, I think personally in my family, it was a combo of vaccine generation DNA mixups, TOXINS like mercury and pesticides, LYME borreliosis, and last but not least, the fact my mother and father lived in southern Utah and were exposed to uranium test experiments when they let off NUKES in the fifties. And or, the fact that some of our grandparents were also experimented on in WW2, Korea and Vietnam wars with experimental vaccines, toxins, and depleted uranium.

Stan, Ive had two friends die of AIDS, their life partners totally unaffected by the disease, never got it. The two friends that did die, died because of something or someone they came into contact with. Had there had been no contact, there would have been no AIDS.

What was it Laurie Anderson said in her song? It's not the bullet that kills you , it's the hole.

Stan wrote:
"What is it about him that made him susceptible when so many others were not? What's so special - so unique - about my kid? The answer lies in genetics. We must study the environmental factors but we'll never know the answer to the questions that have troubled my wife and me for over 15 years if we don't continue studying genetics, too. "

Stan, the genetics of your child could indeed be a factor. But not necessarily.

It could well be that what makes the difference is a combination of environmental factors, e.g. a viral infection in combination with one or more vaccines; a certain combination of vaccines or vaccine ingredients (e.g. aluminum in one vaccine, thimerosal in another?); or perhaps a certain level of exposure to a toxin (lead, or environmental mercury perhaps) prior to receipt of certain vaccines; possibly a vaccine in combination with some type of commensal, parasitic, or symbiotic microbes (keep in mind our bodies actually contain MORE microbe cells than human cells with our own dna); or possibly some nutritional shortfall--just not enough of a certain vitamin or mineral in combination with a vaccine or a particular infection; or maybe exposure to some chemical that affected the blood brain barrier (eg aspartame or msg) in combination with an environmental toxin exposure. Or it could be due to an allergy--which often likely result, not from genetics, but from prior exposure and sensitization.

I strongly suspect the spectrum of autism is the result of a combination of environmental exposures to heavy metals, along with a reduced ability to excrete toxins (due possibly to tylenol, antibiotics, stress, poor nutrition) and/or coincident viral/bacterial infections. (The only way to even begin to determine what such coincident factors might be would be to actually examine many, many kids, take very careful natural histories, and look for any and all patterns.)

My main point, however, is that just because your child had a reaction to a vaccine when most kids did not, does not apriori indicate that genetics MUST be the missing factor. Every child has a unique set of environmental exposures, a unique microbial fauna, unique nutritional status, as well as unique genetics. And if recent findings about epigenetics are correct, then synergistic environmental exposures also significantly affect how one's genes are expressed--which, to me, suggests the answer is environment, environment, environment.

JMO

@ A Mom: Actually, the most recent reviews I've read have numbers around 15%, regarding the cases that have been shown to be genetic, an article has come out about a previously unstudied section of the genome associated with an additional 3-4% of cases, getting us up to 18%, which, yes, is still a minority, but my point is 1) it's a lot more than 5% and 2) that we are still learning what genes are associated and I believe, in time, the minority will become the majority. (needless to say, though I will not go so far to say it absolutely wasn't a trigger for your child's autism, I do not agree with your assessment that the vast majority of autistic children are vaccine injured)

We don't yet know what causes autism but many agree that environmentl factors are at play. If that's the case, I'd like to know why my son reacted to whichever toxin, chemical, pollutant or vaccine while 99% of kids (most or at least many of whom were exposed to the same stuff) did not. My son was diagnosed back when the statistics indicated that one in 5,000 to 10,000 kids was affected and I remember wondering how we had won that unfortunate lottery. I still wonder. What is it about my son that caused him to react to something that had no impact on the vast majority of American children? What is it about him that made him susceptible when so many others were not? What's so special - so unique - about my kid? The answer lies in genetics. We must study the environmental factors but we'll never know the answer to the questions that have troubled my wife and me for over 15 years if we don't continue studying genetics, too.

Have grant apps been rejected? Did anyone apply for grant money for these studies? The money does not fall out of trees. One criticism is that our community is not grant savvy. You have to play the game to win.

I'll believe it when I see it in action as opposed to words. I'll believe it when Shih and Dawson start funneling money to the studies we've been demanding for years and publicizing the results, instead of gingerly suggesting that someone else look into a feasibility study of how to do a study. I just cleaned out a pile of papers and came across the book of conference proceedings from my first DAN conference in 2005. It is now five years later, and the science has come even farther, but AS still isn't even up to speed with where researchers and docs were back then in dealing with issues of methylation, environmental toxicity, digestive disease, and the many available tests and treatments that could be helping children. All that fundraising, all those pathetic "awareness" TV spots and billboards, when they could have been actually helping people become aware of treatments that work. They've decided to be political animals, to tread softly, to not rock the boat, but if they want to do something about the autism epidemic they are going to have to do more than pay whispering lip service to the obvious problem. Until then, IMHO they along with the AAP are Vichy and we are the Resistance.

"The best way to control the opposition is to lead it ourselves."
— Vladimir Ilyich Lenin

Apparently AS believes it too.

As much as I dispise some of the actions of Autism Speaks, I know by experience of being in the polital trenches for 8 years that politics is indeed a blood sport. And money speaks the loudest of all in the politcal arena.

As much as some of the things they have done in the past disgust me, I will swallow my pride if it means one of my adult fellows on teh Spectrum will no longer sit behind closed doors, ignored due to being moderate to high fuctioning, while thier mind rots.

For after seven years, I am being heard and Autism Speaks and other organizations are working on advocating for adult supports for the higher fuctioning. Which means we may have more of a chance to be a part of the world and have our own lives.

If it mans at long last adult supports will finally become available, and teh higher fuctioning are no longer being denied the services they so desperately need to suceed because (they just aren't autistic enough), I will swallow my distaste. For I know this quest of mine is far bigger than me. And the stakes are far to high for me to get picky.

So, is Singer's daughter one of those less than 5% of all ASD diagnoses that is purely genetic? Was there bias in AS against the other 95% of the 1.5 million whose ASD is NOT purely genetic because of her influence, along with the "influence" from pharma?

I don't think too much is going to be done as long as the scientific advisory board is what it is - people who, for whatever reason, do not want to help the VAST majority of people with ASD - our vaccine injured children.

I am sure the Wrights wish they had done many things differently.

I'm thinking about a quote by Alison Singer when she was with AS some years ago, that was printed on the front page of the Wall Street Journal. Something about how autism's not caused by anything parents do wrong, except for having bad genes. After a great deal of grief she did come out with a statement in which she backpedaled somewhat, but it was buried on the AS website for a few days and then was gone. How many people, I couldn't help but wonder, ever saw the retraction, compared with the number of people who read the front page of the Wall Street Journal?

Dadvocate speaks of agreeing to disagree, and treating others with respect. I know that it was a long time ago, but it's not something that I can ever forget. Standing on a public sidewalk, politely asking people if they'd like information about vaccine safety, and being told by the local chapter president of AS that if I didn't leave I would be arrested. Also something I cannot easily forget -- being told by the heads of every local 'support' organization that my words would be censored should I attempt, on their internet forums, to speak of what happened to me. “Yes, we believe you, Robin. We just don't care.” I'm sorry, those weren't the exact words that were used. The exact words of the vice president of my local chapter of the ASA were “I believe you but I'm not going to write off a whole group of people just because YOU happen to have issues with them.” He might as well have spoken the obvious. “I will not write off this really lucrative network of support simply because you happen to have issues with them. And never mind that if you're right, then what they are doing is completely at odds with what is best for people on the spectrum. We don't care. Because they really bring in a LOT of money.” Please don't talk to me about respect. Maybe I'm on the spectrum after all, because I honestly can't say that I understand what the word means, if respectfully is how I've been treated.

I did contact the parent organization of AS by letter to explain to them what had happened to me, and I had documentation to back up what I was saying, and their response was a resounding nada. I personally cannot ever support the organization without a personal apology from someone within the organization. As far as I am concerned, until that happens, I cannot see them as anything but complicit with the vaccine makers and the public health officials who want only to silence anyone who threatens the vaccine industry and their livelihood.

That being said, I understand that few others seem to feel that what they did to me should warrant viewing them with any less respect. However, I think it's clear to many that the leaders of the organization speak out of both sides of their mouths. What matters more to me than a letter that's been buried where few will ever see it are the things they say when the cameras are pointed in their direction. Forget about the thuggish behavior they engage in when the cameras aren't, if it's too disturbing for you.

I feel on this subject that there are within this huge organization it's self many opinions on the topic of vaccines. Due to it's very public courting of federal and state politicans to get the Autism Insurance Bill passed, I feel as though they are desperately trying to not "rock the boat" while the debate for the bill is still going on. THey are toeing the line, trying not to alienate political allies till this is decided.

What happens after that is anyone's guess. It would be my hope that they would at least advocate for a more open-minded dialoge on the subject of vaccines instead of automaticly closing the doors on the subject. That they advocate that all possible causes be researched and considered when searching for the cause.

Should they take that step, and take it pubicly, they will gain my respect. Right now, the jury is out where my thoughts are concerned about this organization. It is my hope that they USE the millions of dollars they have gained through brilliant fundraising campaigns over the years for agressive research into vaccines and other possible causes.

As well as invest into adult services at long last! Because we are still getting left out in the cold. And the fact that they have the money to be able to pay for, design, and run adult supports that would actually work and yet continously only focus on the children really galls me! Children grow up! And a large number of us are turning adults and graduating this year! Get on this allready!!

No organization is perfect but I think the scale that Autism Speaks brings to advocacy efforts, especially on isssues where there is broad agreement in our community (safety, community based lifespan supports, insurance coverage for ABA, etc) does represent great progress from the past diffused efforts by smaller, well-meaning, but ineffective groups.

This weekend, AoA's own Kim Stagliano sat on a panel in Connecticut with Peter Bell of AS. The event was hosted by Congressman Jim Hines. Hines said the same thing I've been hearing time and time again from legislators and policy people for well over a decade:
"Rifts are counterproductive says Congressman Jim Himes, regarding opposing factions within the autism community. Setting policy in Washington is effective when the goals are clear. One consistent intensity can make the difference between help or hindrance."
I thought Bell's comments were good too.
http://www.examiner.com/x-3565-Autism--Parenting-Examiner~y2010m1d23-Autism-Speaks-initiative-with-Congress-Jim-Himes-of-Connecticut?cid=channel-rss-Family_and_Parenting

I'm for agreeing to disagree with one another. Doing so with passion (but respect) is good for progress. However, because one organization does this that or the other thing you disagree with is no reason in my mind not to work together with them on issues of agreement.

Grassroots efforts are all well and good but getting real policy change (rather than platitudes) is a blood sport. My direct experience on insurance and many other issues is that, like it or not, hiring effective (and expensive) lobbyists is the way the game is played if you want to win. Opposition is entrenced and very well funded.

Amen to John Gilmore. There comes a time when lack of desire for coordination and collaboration should be seen for what it really is perhaps. That being that AS, when they came forward with their legislative initiatives wanted to do one thing, be the hero that folks then would donate to. Unfortunately due to their lack of education on what each states direct needs sets are, even in those states where legislation has passed, not many children with ASD are getting their needs met via those legislative efforts.

However the problem comes down to the damage control that has to be done afterward. Then also who is there in the states directly to support families living with autism daily?

A walk happens, money leaves, and who is there to tell a family what to do in a crisis, what to do when your child elopes, what to do when they are expelled from school, or who to seek help from when you loose your job and home? That is not AS at this point.

Yes as a parent that worked hard for years for ASA that has since become a sinking ship, our family needs a national ASD organization. But we need an organization that will take the money raised and not spend it on overhead, expensive fundraisers, nor on "experts" that have short lived fame.

We need local support, we need local funding, we need someone to listen on a daily basis that knows in each state what is present to assist families and individuals living with ASD.

Autism Speaks may consider themselves the voice of the ASD community, but I don't see them listening to, or what is more important, supporting the ASD community on the frontline.

JB,
A lot can change in a year and sometimes nothing changes. In AS's case, some of the people have left, but that doesn't seemed to have changed the overall direction of AS.

In the political and science seas of austism, they still are pumping out water with leaky hoses in an old wooden ship without much course correction and no stars to steer by. No hurricane or Typhoon seems to have blown them off the course of self-destruction.

They have done a terrific job fundraising, but any other direction has floundered. They have done nothing to help parents out of the financial eddy that does nothing but drain parents. They have done nothing for changing state health plans. They have raised their sails and high-tailed it out of any controversial issues (ex. IACC, AAP).

They just hide in the fog and hope the pirates (insert your appropriate anology here) don't find them.

I can go on with the story, but I believe you get the point. I'm not on board that AS ship - never will be.

can autism speaks please run a new commercial with the right porportion numbers it still says 1 out of 166...have autism even my child now 12 with autism knows that it has changed to 1:110...we need the truth..not politics..candace

This is why I've always hoped that since AS likes genetic research so much, they might shift focus to epi-genetics...therein, I believe, we will find the smoking gun.

Whether this is all a year out of date matters not to me, it is surely progress. An open minder scientific view is surely going to come to the same conclusions that many of us have, that is that autism results from an environmental insult impacting upon a child who is already damaged or is subject to a predisposing condition. When I put forward that hypothesis to the wealthy founder of Autism Speaks some years ago she did not seem willing to accept those conclusions. I say Geraldine Dawson please go for it, whatever it is we want to know. There will be no satisfaction in proving that it is vaccine damage as it is virtually beyond repair for our kids but it may save many thousands of other kids who are unknowingly predisposed to harm from vaccine materials.

Tony Bateson, Oxford, UK

I would be hopeful that AS is moving in the right direction if this letter weren't a year old and no where to be found on AS's website, in their promo materials or condensed and in the form of a media release and/or full page ad in USA Today stating "Autism Speaks demands answers from our government". The content is on the money, but if it's buried under a rock and AS doesn't publicly stand behind it, what good is it?

Hi JB,

Perhaps Dawson will be able to push a post-Alison Singer Autism Speaks in the direction of supporting policies that respond in a coherent way to the some of the obvious, but vigorously denied, realities of the Autism epidemic. That would be a good thing.

Yet that is far from the only issue with Autism Speaks.

They are incredibly inefficient with all their money, not just their research funds,

They adamantly refuse to recognize or co-operate with any other autism related organizations. For example, here in NY a coalition of organizations has been working together for several years to get autism insurance reform passed here. That coalition includes every national and local autism membership organization, except Autism Speaks, who refuses to participate despite multiple overtures.

We are make great strides in moving our bill forward, A6888/S6123. Our bill has none of the flaws of the cookie cutter AS insurance bills: no annual spending caps, no age limits, no review boards stacked with opponents to anything that will help our kids. AFTER the statewide coalition began the effort to move this bill forward Autism Speaks had introduced their woefully inadequate cookie-cutter bill. We are moving our bill forward with volunteers, they are using 6-figure lobbyists. But much of our time has been wasted dealing with Autism Speak's basic political incompetence. Despite their lobbyists, AS has made some incredibly stupid political blunders which has rendered their bill impossible to pass. That's AS.

Autism Speaks still has the former worldwide Risperdal marketing manager, Peter Bell, in a key executive position. And as far as I am concerned Mr. Bell has a lot of questions to answer about what he knew, and when, about the side-effects of Risperdal and Janssen's efforts to keep that information from the public.

Autism Speaks is what it is: a very centralized, corporate fundraising machine run by and for careerists. It is very good at raising money and spending it. I can't help but think that a fraction of that money used by other organizations would have produced massively more results than we have seen from AS.

I remember reading that letter and feeling that AS had turned a corner. And then they released

http://www.autismspeaks.org/science/science_news/geri_dawson_vaccines_autism_interview.php

which references
http://www.autismspeaks.org/press/science_strategic_plan_announced.php

JB
it looks like Autism Speaks are moving slowly in the right direction, what makes me sure of this is the UK Autism Speaks renaming themsleves to Autistica (with a tag line of Science in the service of autism).
Their "what causes Autism page" is sad and depressing

http://www.autistica.org.uk/about_autism/causes.php

1) No one knows exactly why but the brain develops differently in people with autism.

2) Finding the causes of autism is one of the most challenging areas of medical science.

3) The absence of a clear understanding about what causes autism makes finding effective therapies very difficult.

4) It is now widely accepted by scientists that a predisposition to autism is inherited with the underlying genetic cause of up to 40% of autism cases having now been identified.

5) It is not clear why a genetic predisposition affects some family members and not others.

6) Improved detection, identification and diagnosis of autism means that we now estimate that 1 in 100 people has an autism spectrum disorder.

7) There are currently no biological tests to confirm a diagnosis of autism. Identification of the condition is at present based solely on observed behaviours.

8) Research is also taking place to establish the part played, if any, by environmental factors either prenatally or after a child is born.

9) Autism is no longer attributed, as it once was, to lack of affection in the child's mother.


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