Posts Tagged ‘autism treatment’

By Alison Singer

This afternoon, the U.S. Court of Federal Claims (i.e. Vaccine Court) issued its decision on whether thimerosal-containing vaccines can cause autism.  The decision, handed down by three Special Masters, was a resounding “NO!”.

From King: “This case is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories…based upon all the evidence that I have reviewed, I find that it is extremely unlikely that Jordan’s autism was in any way causally connected to his thimerosal-containing vaccines. In short, this is a case in which the evidence is so one-sided that any nuances in the interpretation of the causation case law would make no difference to the outcome of the case.

From Dwyer: “In an effort to render irrelevant the numerous epidemiological studies of ASD and TCVs (thimerosal containing vaccines) that show no connection between the two, they contend that their children have a form of ASD involving regression that differs from all other forms biologically and behaviorally. World-class experts in the field testified that the distinctions they drew between forms of ASD were artificial, and that they had never heard of the “clearly regressive” form of autism about which petitioners’ epidemiologist testified. Finally, the causal mechanism petitioners proposed would produce, not ASD, but neuronal death,and eventually patient death as well. The witnesses setting forth this improbable sequence of cause and effect were outclassed in every respect by the impressive assembly of true experts in their respective fields who testified on behalf of respondent.

From Dwyer: “Petitioners propose effects from mercury in [vaccines] that do not resemble mercury’s known effects in the brain, either behaviorally or at the cellular level. To prevail, they must show that the exquisitely small amounts of mercury in [vaccines] that reach the brain can produce devastating effects that far larger amounts experienced prenatally or postnatally from other sources do not.”  

The special master also dismissed claims that some groups of children are unusually susceptible to the effects of mercury. “The only evidence that these children are unusually sensitive is the fact of their [autism] itself.”

This whole process began back in 2002 when the Special Masters from the Vaccine Court createdan omnibus proceeding for handling the claims that alleged that vaccines were associated with autism. Today’s ruling focuses on whether thimoerosal-containing vaccines can cause autism. Last August, the court ruled that thimerosal in combination with MMR vaccine could not cause autism.

There are two key points to keep in mind today. First, the special masters are not scientists and they did not answer a scientific question today. The science has been in for some time now in and it’s quite clear. Vaccines do not cause autism.  We have multiple studies (www.autismsciencefoundation.org/autismandvaccines.html) that have been done looking at whether or not thimerosal, at the level contained in vaccines, causes autism and again, looking at hundreds of thousands of children on several different continents by several different investigators and different populations of children. Children who received thimerosal in vaccines as compared to those who received lesser quantities of thimerosal in vaccines or no thimerosal in vaccines all had the same risk of autism. And frankly, the amount of mercury one is exposed to in the environment or even breast milk as compared to what’s in vaccines would argue against vaccines being causative.

Secondly, when you look at the history of vaccine court, this court hasn’t always come down on the side of the science. The standard of evidence bar is purposely set very low in vaccine court. The court was designed to compensate victims of vaccine injury, which of course is very real. The standard of evidence is biologic plausibility, rather than scientific evidence. In other words, you don’t have to prove that thimerosal actually causes autism, only that it might. One of the goals of the legislation creating the vaccine court in 1986 was to be generous with compensation because there are people who have very real, very serious adverse reactions to vaccines and they should be compensated.  And if you look at other rulings, this court tends to err on the side of overcompensating to avoid a big spillover into civil courts. Another goal of the vaccine court is too avoid massive civil litigation that could put us back where we were in the early 1980s where companies were exiting the vaccine manufacturing business over fear of litigation.

I can understand wanting to find a reason for why your child was diagnosed with autism. As a mother, it’s hard to accept the idea that your child is going to struggle and have all these challenges.  It’s natural to want to blame someone or something. Believe me, I’ve been there. We love our children so much and we just want to do everything possible to help them. I can understand parents who are upset and angry and just want to know how this could have possibly happened, and I feel for the families who filed in vaccine court because they are clearly in a lot of pain. But they need to look at the data. You can’t be so focused on anger that you lose sight of what the science is saying because that’s not in the best interest of the kids.  At the Autism Science Foundation we always encourage parents to look at the science and make decisions based on the science.  And this is what the special masters did. They looked at the data.

And I want to stress one more point; this is really not an issue over which parents and scientists disagree. Parents have access to the studies on the internet and we know how to read. The studies are very clear. The vast majority of families have come to the same conclusions as the special masters. It’s not a scientists vs. layperson or scientist vs parents issue.  Everyone is coming to the same conclusion, except a small, vocal minority of parents who just don’t want to believe what the data clearly show.  And frankly it scares me to see children with autism being put at risk by therapies that have grown out of the incorrect vaccine hypothesis, like heavy metal chelation, that have no evidence of efficacy and can do real harm, especially when they divert time and energy away from therapies like Applied Behavior Analysis which have been proven to help our kids.

Hopefully after today’s ruling, we can put this issue behind us and move forward and direct our scarce autism research dollars to studies that will provide new information about what causes autism and how best to treat it.

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By Justine van der Leun 

The subject of autism is one that often ignites a fiery debate, namely because so much remains unknown about the illness. Doctors, parents, caregivers and even people living with autism are sharply divided on everything from the causes to the possibility of a cure to the correct course of treatment. The most recent autism-related bombshell? The February 2, 2010, retraction by the medical journal The Lancet of a paper it published in 1998 alleging a connection between the measles, mumps and rubella vaccine (MMR) and autism. The claims made in the study, which led to a significant drop in vaccination rates for children, were determined to be false.

While most experts agree that there is a genetic component to autism, many other questions remain. To get two different medical viewpoints on the major issues, we conducted separate interviews with Paul Offit, M.D., chief of infectious diseases at the Children’s Hospital of Philadelphia and author of “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure” and Geri Dawson, M.D., chief medical officer of Autism Speaks, an autism advocacy organization.

AOL Health: How do you define autism?

Paul Offit: Autism is a problem with speech and language and communication. It’s a neurological condition probably existent from birth.

Geri Dawson: Autism is a neurodevelopmental disorder characterized by different areas of social interaction and communication. Individuals often have preoccupations, a restricted range of behaviors, stereotypical or ritualistic behaviors like hand flapping or are overly focused on a range of behavior.

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The Autism Science Foundation announced today that it had awarded doctoral training fellowships to six pre-doctoral students committed to pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders.  In all, $180,000 in grants will be distributed to student/mentor teams conducting research in autism treatment, biomarkers, animal models, and epidemiology.

“We are thrilled to be funding grants after only ten months of fundraising and operations,” said Autism Science Foundation co-founder Karen London.  “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

“Too much time has been spent looking backwards at the now debunked theory that vaccines caused autism,” said Alison Singer, president of the Autism Science Foundation. “We need to regroup; we need to look forward and invest in discovering biomarkers that can lead to earlier diagnosis, in animal models that can illuminate biological pathways, and in treatments that target the most debilitating aspects of autism. This round of grants is aimed in that direction.”

Grant applications were reviewed by members of the Autism Science Foundation’s Scientific Advisory Board (SAB) as well as by outside scientific experts in specific subject areas. Grants were also reviewed by ASF’s Stakeholder Review Committee, comprised of parents, individuals with autism, a special education teacher and other stakeholders.

The following projects were selected for funding (student/mentor):

  • Sarita Austin/Dr. Rhea Paul; Yale Child Study Center:  
    Enhancing Understanding and Use of Conversational Rules in School-Aged Speakers with Autism Spectrum Disorder
  • Karen Burner/Dr. Sara Jane Webb; University of Washington, Seattle:
    Observational and Electrophysiological Assessments of Temperament in Infants at Risk for Autism Spectrum Disorders
  •  Rhonda Charles/Dr. Joseph Buxbaum; Mount Sinai School of Medicine:
    A Preclinical Model for Determining the Role of AVPR1A in Autism Spectrum Disorders
  • Sarah Hannigen/Dr. Mark Strauss; University of Pittsburgh:
    Defining High and Low Risk Expression of Emotion in Infants at Risk for Autism
  • Matthew Maenner/Dr. Maureen Durkin; University of Wisconsin, Madison:
    Phenotypic Heterogeneity and Early Identification of ASD in the United States

  • Michael Sidorov/Dr. Mark Bear; MIT:
    Investigation of Postnatal Drug Intervention’s Potential in Rescuing the Symptoms of Fragile X Syndrome in Adult Mice

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Wired Magazine  (November 2009) has published a cover story and several additional sidebar stories on the anti vaccine crusade.  They all well worth reading.

Cover Story: An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All http://www.wired.com/magazine/2009/10/ff_waronscience/

The MisInformants: Prominent Voices in the AntiVaccine Crusade (list includes Jenny McCarthy, Jim Carrey, Joe Lieberman, Robert F Kennedy Jr, Don Imus, and MSNBC’s Joe Scarborough) http://www.wired.com/magazine/2009/10/ff_waronscience_misinformants

What’s the Real Story on the Vaccine Debate. Learn More (calls out disguised anti-vaccine websites, and provides links to reputable information on CDC and NIH websites) http://www.wired.com/magazine/2009/10/ff_waronscience_reading

How to Win an Argument About Vaccines (sets out myths and facts) http://www.wired.com/magazine/2009/10/ff_waronscience_argument

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This week’s show focused on the new study in Pediatrics indicating autism prevalence rates are now 1 in 91. Autism Science Foundation President Alison Singer discusses the data, describes what the autism community really needs, and answers the question of whether autism is caused by vaccines.

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by Shannon Des Roches Rosa

Autism Science Foundation president Alison Singer is well known in the autism community for her formative role at Autism Speaks and for leaving Autism Speaks to found the Autism Science Foundation.  

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ASAT has resumed publication of its quarterly newsletter, Science in Autism Treatment.  Parents can often be enticed and distracted by the myriad of alternative autism treatments that have been put forth, many of which lack evidence of efficacy. Often, these treatments run counter to effective approaches and may deplete precious resources.  We believe that ASAT’s free e-newsletter may help families make informed choices about autism treatments. Newsletter recipients will stay informed of up-to-date science-based treatments, read about ASAT’s response to inaccuracies about autism treatment in the media, and learn how science can be used to inform decision making.

The new issue can be found at www.asatonline.org/pdf/summer2009.pdf. Individuals can sign up for the newsletter by using the following link www.asatonline.org/signup.

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By Alison Singer
President, Autism Science Foundation

This post is in response to Marc Rosen’s examiner.com post “Why Autistic People Don’t Like Autism Speaks”. http://www.examiner.com/x-21742-Long-Island-Autism-Examiner~y2009m9d7-Why-autistic-people-dont-like-Autism-Speaks#comments. I am posting here because of the 1000 character limit at examiner.com.

In  his blog post, Marc Rosen writes, “Another huge reason why autistics hate Autism Speaks is their film ‘Autism Every Day’, in which they film their then-Executive Vice President, Alison Tepper Singer, saying that when her daughter was first diagnosed, she seriously contemplated driving her car, with her autistic daughter inside, off a bridge… By her own admission, apparently, she would have preferred to murder her own child than to have an autistic child.”

The film Autism Every Day was produced several years ago, and I still get questions about what I meant by my comments, particularly the comment about  contemplating driving off the George Washington Bridge rather than put my daughter in a school for kids with autism. Everything I said in the Autism Every Day video was an honest reflection of how I felt at the time. When I went to see the schools that the New York State Department of Health recommended for my daughter Jodie, I was sick to my stomach. It was out love for her that I would never let her be in a place like that. It brought back very difficult memories of when my brother was institutionalized when we were kids. I certainly don’t want to kill my daughter. I love my daughter and am incredibly proud of her and of all the progress she has worked so hard to make. I am part of this community because of my love for her. The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did. If I had the film to do over again, I would certainly try to make that point more clearly than I did. I certainly did not mean to offend anyone or suggest that Jodie’s life (or anyone else’s) was not valued.

After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options. This was at the start of our journey. When Jodie was diagnosed, I didn’t know what to do. I called the New York State Department of Health, said that the neurologist thought she should go to a special education preschool, and asked them to give me some names. Given the lengthy waiting lists at most schools, try to imagine the type of state supported school that has an opening in March. Fortunately, after this terrible day I connected with other parents in my town and found a great special education preschool where Jodie thrived. We had to wait a year for a spot to open, so before she started we did a home ABA program. That therapy also helped her tremendously. I had no idea these options even existed on my fateful “school visit” day. But the truth is that after I visited the state schools that day I pulled my car over to the side of the road and really did think about whether we would all be better off if I just drove the car off the bridge with the two of us in it, and whether that might spare her the suffering that my brother experienced in Willowbrook. Those thoughts were not rational, although those feelings were real. I am not the only mother to ever experience those desperate thoughts. Fortunately, it didn’t last very long and after a few minutes I drove home. Many parents called and emailed me after they saw the film and said they had experienced the same moments of desperation. Please know that those feelings stem from love and desperation. We love our children.

I have spent a lot of time in the last year or so speaking with members of the neurodiversity community and have learned a lot from these conversations. These relationships have been very productive for me, and I have a much better of sense of the issues now. I have changed my behavior and rhetoric in response to some of the very good points people have made, and continue to speak frequently with many of the leaders of the neurodiversity community. There is still one big issue, however, on which we disagree. I do still feel that genetics research is the best chance we have for understanding the mechanism of action of autism and creating targeted therapeutics. This remains as a sticking point in my relationships with many of the leaders of the neurodiversity movement, although I do think that we have tried to be friends and continue to talk about this issue. I also don’t think that a belief in the importance of genetics research detracts from my eagerness to support research into supports and services and expansion of funding for this critical area. I have been extremely vocal on that issue at the IACC meetings.

I also think a lot of these issues stem from the heterogeneity of the autism diagnosis. I truly pray for the day to come when my daughter can blog or self advocate. She still has a long way to go in overcoming significant cognitive challenges. But I look at the type of work that Dr. Mark Baer is doing at MIT and am really hopeful that Jodie and other kids like her will someday be able to benefit from that type of research.

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