|(R to L) Alison, Shannon,|
and a Furry Blue Monster
The Autism Science Foundation (www.autismsciencefoundation.org) has accomplished so much in such a short period of time. Tell us about some of the achievements that have really made you proud.
Well, first of all, we couldn’t do any of this without the incredible support of our amazingly dedicated donors, volunteers, board members, social media friends and staff. They make it all possible. We have been so fortunate to have so many vocal and active supporters. We are also extremely grateful for the tremendous outpouring of support we’ve gotten from the autism research community, the NIH (National Institutes of Health), the CDC (Centers for Disease Control & Prevention), and the AAP (American Academy of Pediatrics), and for the warm welcome we got from other autism advocacy groups, many of which we now work with collaboratively.
What I am most proud of is that we starting funding science in our first year of operations and have increased our funding levels each year. In just two years we have funded just under half a million dollars in grants. Our funds support pre and post doctoral fellows who work with established research mentors, investigating the causes of autism and developing new treatments. These grants are already producing results, including a new mouse model of autism and a new intervention strategy that utilizes the recess period at school to work on social skills.
I’m also very proud of the educational programs and conferences we are supporting to help disseminate autism research to families and schools so that new evidence based research can be put into practice to help real people. I love our Science and Sandwiches program which brings small, informal groups of scientists together with parents and individuals with autism to share ideas. It’s critical for these stakeholder groups to work together and share information. I also love our IMFAR scholarship program that sends stakeholders like parents, siblings, individuals with autism, special education teachers, student researchers, journalists and others to the International Meeting for Autism Research.* These opportunities to bring diverse stakeholder groups together to discuss ways to increase the pace and relevance of research is really critical.
I am also extremely proud of the amazing people who work with me every day at the Autism Science Foundation; Jonathan, Dawn, Max and Ben. They really make great things happen for all our families. But maybe what I am most proud of is when someone, who shall remain nameless but who has run organizations and is in a position to know, asked me how many people work at the Autism Science Foundation and then guessed 30-40. I almost fell over. We get a lot of work done because it’s a labor of love.
What’s ahead for ASF? Any new programs planned for the future?
We are planning to increase our funding levels again this year for pre and post doctoral fellowships and we hope to offer even more IMFAR scholarships in 2012 to get more stakeholders to that important meeting. We are always looking for ways to break down research barriers and involve more families and scientists in autism research. We are working with the IAN project (Interactive Autism Network) to create more opportunities for students to utilize the IAN database for their research and we are looking at ways to encourage more families to participate in clinical trials and tissue donation.
This fall we are sponsoring two educational symposia; one in New York and one in California. The NY conference is for teachers and will focus on helping them understand and implement new evidence-based interventions that are designed to be used in schools. The California conference will be aimed at parents and will focus on family issues and assistive technologies.
We are working with other autism advocacy groups to prevent and protect children with autism who wander and also to eliminate harmful restraint and seclusion practices. The first step in achieving these public policy goals is often collecting data about the issue and so ASF organized a coalition of advocacy groups to gather rigorous data on wandering. The next step is to use the data to effect change.
I’m also very proud of our social media efforts. We have vibrant, active Facebook, Twitter, LinkedIn, and YouTube communities that provide great support and information for families. And also we’ll be relaunching our web site in early fall; it will have a tremendous amount of autism science information and will be a real resource for many different autism stakeholders. I’m really excited about the new website; the beta site looks absolutely fabulous.
Why was the Autism Science Foundation (ASF) founded? What gaps will it fill?
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 were thrilled when after only five months of operations [in 2009] we were already able to release our first request for scientific grant proposals. Our first round of grants supported graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders. The grants provided funding for them to begin their research and thus their careers in this field. This is really a critical part of the process. [At the 2009] IACC Scientific Workshops, the concept of recruiting young, energetic scientists with new ideas into the field was highlighted as a critical priority.
How do ASF efforts differ from organizations such as the Boston Autism Consortium or the M.I.N.D. Institute?
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 Research 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.
What areas of autism research is the ASF currently supporting?
In our current RFA 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.
Autism research funding is sometimes criticized for helping future generations at the expense of the existing autism community. Will the ASF be putting energies into community support, outreach, or education?
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.
What kinds of conversations have you had with members of the Neurodiversity community? What concerns have they voiced to you?
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. 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.
Why do you think scientifically refuted claims of autism causes and cures still appeal to some parents?
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.
If you could communicate one message about autism to those outside our community, what would it be?
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 six 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.
* note from the editors: Shannon Rosa was the recipient of one of the IMFAR grants in 2011. Please visit www.autismsciencefoundation.org for more information, or to apply for a grant next year.