Autism Science Foundation president Alison Singer is well known in the autism community for her formative role at Autism Speaks, for her controversial participation in their Autism Every Day video, and for leaving Autism Speaks to found the Autism Science Foundation.
She a role model for autism parents struggling to balance advocacy with positivity and work with family, especially those who tirelessly investigate ways to help our children lead fulfilling lives, actively respect neurodiversity, and continue to educate ourselves and others about autism perspectives and attitudes.
Read on to learn about the founding and goals of the Autism Science Foundation, how "We [at The ASF] are really going to follow the science and not let the politics trump the science," why she thinks parents support questionable autism cures and causes, how her relationship with the Neurodiversity community has evolved, and what our primary message about autism should be.
SR: Why was the Autism Science Foundation (ASF) founded? What gaps will it fill?
AS: The Autism Science Foundation’s mission is to support autism research by providing funding and other support to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. We also provide information about autism to the general public and work hard to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
ASF adheres to rigorous scientific standards. We believe that outstanding research is the greatest gift we can offer our families. Every research dollar needs to count. We are thrilled that after only five months of operations we have already released our first request for scientific grant proposals. Our first round of grants will support graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders. The grants will provide funding for them to begin their research and thus their careers in this field. This is really a critical part of the process. Just last week at the IACC (Interagency Autism Coordinating Committee) Scientific Workshops the concept of recruiting young, energetic scientists with new ideas into the field was highlighted as a critical priority.
SR: How will the ASF efforts differ from those of organizations like the Boston Autism Consortium or the M.I.N.D. Institute?
AS: ASF is committed to supporting outstanding science and scientists but we don’t do research ourselves. We have great respect for the work being done at the MIND Institute, by the Boston Autism Consortium and by other centers and universities across the country and around the world. As a public charity, our focus is on raising money from the public to support the type of work being done by these groups and other groups that are taking a scientific approach to understanding what causes autism and to developing new treatments for kids, teens, adults, and senior citizens. Raising money is not easy, especially in the current economic climate. Our families are often tapped out because they have huge expenses for therapy that are not covered by insurance. Our goal is to broaden the base of donors so that we are able to provide more funds to scientists and support their research efforts.
That said, the response from the parent community has been extremely supportive. The response from the scientific community has also been very supportive. People are just very enthusiastic about the idea that we are really going to follow the science and not let the politics trump the science.
ASF is also very committed to sharing and disseminating information about autism research and treatments. Our website has a very popular “Autism Headlines” section where we post the latest news about autism research. Our “Autism Science” section publishes links to the latest studies and provides commentary and analysis from the investigators themselves. We also run a bi-monthly program called “Science and Sandwiches” that brings scientists and family members together to talk about research. These have been great opportunities for information to flow in both directions. It’s critical for scientists to hear from families as well as for families to understand the latest research discoveries. The information that scientists glean can’t help families if families don’t know about it.
SR: Does the ASF plan to support research into the heterogeneity of autism, i.e., on whether individuals at opposite ends of the autism spectrum should be given the same label?
AS: In our current RFA (request for applications) we are inviting applications in all areas of related basic and clinical research. We are particularly interested in human behavior across the lifespan, which would include language, learning, communication, social function, epilepsy, sleep, repetitive disorders and caregiving. Caregiving is a critical area for us to understand better. We know our families are highly stressed and we need to find betters way to understand how we can support families so that they can support their members with disabilities. We are also interested in neurobiology (anatomy, development, neuroimaging), neuropathology, human genetics/genomics, pharmacology, immunology, molecular and cellular mechanisms, and studies employing model organisms and systems.
SR: Autism research funding is sometimes criticized for helping future generations at the expense of existing in-need children and adults, like your daughter and my son. Will the ASF be putting energies into community support, outreach, or education?
AS: Our focus is on research and on research dissemination. There are lots of groups that do wonderful work in community support, education, and lobbying and we will work with them to help support their efforts whenever we can by partnering in local events. But the focus of our organization will be on raising the funds necessary to make meaningful advances in research.
SR: The Neurodiversity community has been critical of both the ASF and your own diplomacy efforts. What concerns have they voiced to you?
AS: 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. Genetics research is not about creating a prenatal test and eliminating people with autism from the planet. It’s about understanding the pathways that cause the most disabling symptoms of autism and figuring out how to develop treatments that provide relief from these debilitating symptoms [emphasis mine SR]. Our belief in the importance of genetics research in no way detracts from our 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 and so many kids like her still have a long way to go in overcoming significant cognitive and behavioral challenges. I realize that concepts like self determination are important for certain individuals with autism, but right now in our family we are still working on preventing our daughter from banging her head against the wall and hurting herself, or running out of the house into traffic and getting run over by a car. Issues like preventing pain and protecting safety are still front and center for many of our families.
SR: Why do you think scientifically refuted claims of autism causes (vaccinations) and cures (chelation, etc.) find such a wide audience?
AS: I think it’s because parents love their children so much. It’s very hard to accept that your child is going to struggle and have these tremendous challenges. It’s natural to want to blame someone or something. Believe me, I've been there. But parents 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. And the science is clear in the case of vaccines and autism. Vaccines don’t cause autism. 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 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 have to ask new questions and try to find out what really is causing autism.
It also scares me to see children with autism being put at risk by therapies that have no evidence of efficacy and can do real harm, especially when they divert time and energy away from proven therapies like Applied Behavior Analysis. One thing I find so interesting in our community is the huge placebo effect in so many treatment clinical trials. Parents say the kids are benefiting from treatment, but often the parents of the kids on placebo report even better outcomes. Again, I think this is because we love our kids so much and want them to improve. But this is why it’s important to have rigorous, double blind, placebo controlled testing of various interventions.
SR: If you could communicate one message about autism to those outside our community, what would it be?
AS: The message I constantly try to communicate is that our family members can learn and improve. They can make meaningful progress at all ages. The learning window does not magically close at age 5, 13, or 21. My brother with autism, for example, wasn’t toilet trained until he was in his thirties but now is able to participate in a program delivering Meals on Wheels to homebound senior citizens. He is a contributing member of our community, but he wouldn’t have had that opportunity if we had given up on teaching him new skills. Likewise, my daughter Jodie is doing things now that we never would have expected. It has taken 6 years to teach her to ride a bike, but she’s almost there. Jodie has benefited tremendously from applied behavioral analysis therapy. She has learned to have some actual functional, communicative speech. She's able to make her wants and needs known. That's really a breakthrough. And as her speech has improved, so have some of her most difficult behaviors. We owe so much to the amazing teachers and therapists who work with her.
Those who need resolution regarding Alison Singer's statement in the 2006 Autism Every Day video, in which she "contemplated driving off the George Washington Bridge rather than put my daughter in a school for kids with autism," should read Ms. Singer's own thoughts on the matter. It is my hope that we can listen to and take action on what she has to say now, and move forward, rather than clinging to old resentments which in no way benefit our children, peers, or families.
To see how Shannon Des Roches Rosa's attitudes about autism have changed over the past six years, sift through the 2,000 blog posts at www.Squidalicious.com. To see how she supports and advocates for local families of children with special needs, visit The Can I Sit With You? project.
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