It's been a rough year for the anti-vaccine movement.
In February, three federal judges ruled in three separate cases that there is no association between vaccines and autism.
In April, Alison Singer resigned(blog.centerforautism.com) from her role as executive vice president of Autism Speaks, the nation's largest private supporter of autism research, citing a disagreement with the organization's decision to continue to fund research into a possible link between vaccines and autism despite mounting evidence that vaccinations do not cause autism spectrum disorders.
Singer announced that she instead would put her efforts into the newly founded Autism Science Foundation(www.autismsciencefoundation.org), along with co-founder Karen London. Both women are parents of children with autism.
Singer, the president of the new organization, has an economics degree from Yale and an master's degree in business administration from Harvard Business School. No stranger to the media spotlight from her time as a spokeswoman for Autism Speaks, she previously spent 14 years as a producer at NBC and CNBC.
AAFP News Now recently talked with Singer about the new foundation, the need for new research into the causes of autism, the need for parent education about vaccines and related topics.
Q: You had been with Autism Speaks since it started in 2005. Was it hard to leave, and what triggered that decision?
A: Autism Speaks is a great organization, and I am really proud of all the work that we did while I was there and the work that Autism Speaks continues to do. I think the work they have done increasing awareness of autism around the globe and creating a more compassionate community for kids with autism to live in is incredibly important. They've really changed the landscape, and I think that the work they do in legislative advocacy, going state by state in trying to get insurance coverage for medically necessary treatments for autism is critical. You know, our children are routinely discriminated against because insurance doesn't cover evidence-based, medically necessary treatments, and now they're working to get a federal law. So Autism Speaks does a lot of wonderful work.
I disagreed with their philosophy with regard to continuing to fund research that really has already been done, which is looking at whether the measles, mumps, rubella vaccine causes autism or whether thimerosal is related to autism. Those questions have been asked and answered, the data are clear and convincing, and we really need not put additional research funds into asking the same questions. We don't have an unlimited pot of money with which to fund autism research. We can't continue to ask questions for which we already know the answers. We need to look in new areas. That's the only way we're going to get new information and useful information for our families.
Q: Have you always thought that more research was needed in other areas, or did that evolve as more studies failing to link vaccinations to autism were published and decisions supporting those findings were handed down in the courts?
A: I think families were right to ask that the vaccine studies be done in the late '90s and the early part of this decade, but our public health community really responded to that. And we now have dozens of studies that are looking at vaccines and vaccine components, all of which have yielded the same answer that, no, vaccines do not cause autism. I think we owe it to our families, we owe it to people with autism to fund studies that are likely to yield new information. If you keep asking the same question, you're going to get the same answer. We really owe it to our family members to ask new questions and try to find out what really is causing autism.
Q: You've been the target of some harsh criticism on some of the autism blogs. Has this been a difficult position for you to take, given where you came from?
A: I think any time that you take a public stand, you are opening yourself up to the potential for criticism, but I feel very strongly, because of the fact that I have an older brother with autism and I have a daughter with autism, that the greatest gift we can offer our family members is research. But that research really has to be focused on questions that have not been answered and on finding new information. I think sometimes criticism is to be expected, but I'm focused on the truth and the data. And if people want to criticize a focus on the truth and the data, then that's certainly their right.
Q: You mentioned some of your family issues. How much of a focus will your new foundation put on genetic research?
A: I think we know that genetics is an important area of study. We know that autism is a genetic disorder, and we know this because of the twin studies. Scientists have shown that in identical twins there is an 80 to 90 percent chance that if one twin has autism, the other twin also is going to have autism spectrum disorder. And for non-identical twins, fraternal twins, there's between a 3 and 10 percent chance that both twins would have autism spectrum disorder, which is the same as regular siblings. So we know there is a strong genetic component, but because it's not 100 percent concordance in identical twins, we also know there are some environmental triggers that are involved with autism, and we need to focus on what those environmental triggers should be. The point is that probably the best-studied potential environmental trigger is vaccines, and vaccines have been shown not to be causative with regard to autism, and we need to turn our attention to other potential environmental triggers.
Q: How is fundraising going, and are you getting any support from the health care industry or vaccine manufacturers? Where is that coming from?
A: The response from the parent community has been extremely supportive. People are very enthusiastic about the idea of an organization that is going to focus on cutting edge research that is really going to yield new information for their families. The response from the scientific community has been very supportive. I think again people are very enthusiastic about the idea that we are really going to follow the science and not let the politics trump the science.
Q: How soon will you be awarding grants? Where are you at on that?
A: We are hopeful that we will be able to start putting some money into the field by the end of this year. At this point, we're still hoping to issue our first request for proposals in the early part of the fall and start to make some funding placements by the end of this year.
Q: Going back to the vaccine question, what do you say now to parents who still think their children's autism was triggered or caused by vaccines?
A: I can understand wanting to have a reason, to need to point to some reason why your child was diagnosed with autism. Believe me, I've been there. We love our children so much, and we just want to do everything possible to help our children. I can understand parents who are upset and angry and just want to know why did this happen to their child and what can they do to help their children. 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 really not in the best interest of the kids. I would encourage parents to look at the science and make decisions based on the science.
Q: We've seen outbreaks of measles and Haemophilus influenzae type b in the past year, including a few deaths, and some vaccination rates have dropped. What do you think needs to be done in terms of vaccine safety education and countering the message of the anti-vaccine groups?
A: I think parents need to understand that when they withhold vaccinations from their children, they are doing absolutely nothing to reduce the chance that that child will be diagnosed with autism. But they are absolutely increasing the chance that their child could contract an infectious disease for which there is a vaccine. I think it's really important that parents understand that they are taking a big risk if they're not vaccinating their children. I also think it's really the responsibility of physicians to do everything they possibly can to help parents understand why children need to be vaccinated and why the vaccine schedule from the Centers for Disease Control is the way it is. It's designed to protect children at the times that they're most vulnerable to infectious diseases. Studies show that parents do make those decisions based on what their pediatricians or family physicians are telling them. It's really critical that physicians take that extra time to talk to families and answer their questions because what they say makes a difference.