How do you keep up with all the new autism research? A quick search on PubMed using only the keywords “autism” results in 17,611 papers published in the last 5 years! The US Department of Health & Human Services Interagency Autism Coordinating Committee publishes the summary of advances highlighting the significant progress in the field but this comes out once a year. With multiple autism specific journals each publishing ~10 articles monthly, there is an extensive amount of research available. Even those of us whose jobs are in research are swamped by the amount of new work coming out weekly.
One of the strategies I have been using to get a handle on new research, particularly in areas where I am not an expert, is to look to organizations like the Autism Science Foundation and their social media research efforts. I am a big fan of ASF (see disclosure below) and hope that by knowing more about the organization, you too can benefit from their resources.
Autism Science Foundation was founded in 2009 to support autism research by providing funding and assistance to scientists and organizations facilitating autism research. For non-scientists, importantly, ASF is a leading organization in the dissemination of scientific research, through their Day of Learning Ted-style-talks, Blog, and Podcasts – all of which are available on their website and via the links below.
Alison Singer MBA is the Co-Founder and President of ASF and Alycia Halladay PhD is the Chief Science Officer. Both were gracious in answering questions about ASF and its scientific outreach.
Alison and Alycia, what are your goals for your ASF talks, blogs and podcasts?
Alison: The Day of Learning is one of my favorite days of the year. It’s our day to bring scientists together with families to share knowledge, ideas and also brownies.
Alycia: The Day of Learning talks give attendees the unique opportunity to hear a condensation of an important research topic in around 10 minutes, to ask questions, and interact with autism scientists in a smaller venue. Over the course of a day, participants get to hear summaries of about half a dozen different topics. But not everyone has the ability to come to NYC for an entire day. So the podcasts and blogs update the community on the most recent research and scientific findings. The goal is to make scientific findings accessible to the autism community. The pace of science is slow, but strides are being made and people don’t even realize it. For that reason, every year ASF publishes a year-end summary in autism research. It uniquely identifies the areas of science that have seen the most progress each year and puts those findings in the context of the bigger picture of autism. In this way, the community can actually understand what has been learned this year, and how it influences the overall understanding of ASDs.
Alison: Yes, one of my favorite parts of preparing for the day is working with the scientists to translate their talks from “science” into “English”.
Your ASF blog extends back to 2009. How do you choose what topics to write about?
Alycia: We focus on information that is important to the community. If there is a topic where the community disagrees, we don’t shy away from it, and in fact try to help separate out what is known from what is unknown and present multiple points of view. We also use social media to crowdsource topics of interest, we want to hear from you directly what you want to hear more about, what’s confusing, or elusive, or what is known about a particular topic? This can include topics the community naturally finds interesting, like interventions in educational settings, or ones that they may not initially value, like animal models or gene pathways.
Your Day of Learning started in 2014 and has now completed its 4th year! (The 2018 will be April 11 in New York NY.) What are some of the most memorable talks?
Alycia: I was attending the Day of Learning even before I started at the Autism Science Foundation, and I still remember Cathy Rice talking about the prevalence of autism and how difficult calculating that number is. It was right after the CDC prevalence numbers had been published, and the title of her talk was “Who Has Autism?” Right after she announced the title, our friend Paul Morris jumped up and said: “I do!” To me, that’s one of the best things about the Day of Learning. Not just the talks, but the way that the community is able to interact with researchers and have a conversation.
Alison: The most memorable talks have been the ones we crowdsourced on facebook and twitter. We solicit topics from the community for the Day of Learning. This year families asked us to focus on medical marijuana and sleep. Last year they wanted to hear about housing options, recurrence risk in grandchildren, and about helping people develop practical skills of daily living. Our community knows what it wants. It’s our job to bring it to them.
I am a huge fan of Alycia’s podcast, get my updates via twitter (@alisonsinger; @AHalladayASF) and listen while commuting. What do you see as unique about the podcast?
Alycia: Thanks Sara! Every week, almost a dozen new research studies come out with new and exciting findings, and even if the community all had access to the scientific journals (which they don’t), most people don’t have the time to read through them all. Our hope with the podcast is that these findings can be highlighted, explained, broken down into “why this is important” and tied to their contributions to the lives of people affected by autism.
Alison: The podcast is one of the best things we do and Alycia is absolutely the perfect person to do it. She is uniquely qualified to explain the scientific findings so that families can understand and implement them. She is too modest to mention that her podcast was named the top autism podcast of 2017 by Healthline! It’s an amazing resource!
Of the research that ASF has supported and reported on, what are you most excited about?
Alison: We focus on funding studies that will bring real value to real people. Our goal is to improve the lives of people with autism and we keep that thought in mind when we select projects to fund. We need to understand the underlying causes of autism so that we can create personalized interventions based on symptoms. And we need to subject all potential treatments to the rigor of clinical trials. Our families deserve to make decisions based on evidence and data.
Alycia: It’s really exciting to see an ASF fellow publish on a topic long after they have completed their ASF award. The story of how a junior level scientist goes on to develop their own research questions and take their findings one step further, is always the most exciting. Also, it has been especially exciting to see the new work being done in sex differences in autism. For decades, the difference in prevalence between males and females was noted but not explained, and females with autism were ignored. It’s gratifying to see scientists better understand females.
Thanks Alison and Alycia!
Disclosure
Sara Jane Webb has worked with mentees who received funding from Autism Science Foundation, including Veronica Kang and Ethan Gahr (undergraduate summer fellowships) and Karen Burner Barnes (graduate fellowship). “Way back” when I started in this field, I received one of my first grants from the National Alliance for Autism Research, an organization whose leadership included Alison Singer. I also review grants for and attend meetings sponsored by ASF.
Raphael Bernier (Director of the SCAC) and Bryan King (former Director of the SCAC) are on the ASF scientific advisory board.
