The coronavirus crisis has changed life as we know it. Over the past few months, the news has been full of grim headlines about the pandemic and those who are feeling the effects, including essential workers, the recently unemployed and students.
One group that isn’t being talked about as much are those with an autism spectrum disorder (ASD). With schools and programs closed and daily life turned on its head, individuals with autism have seen their cherished routines evaporate almost overnight, and their families are also experiencing tremendous stress.
Fortunately, the Autism Science Foundation is here to help. ASF was founded eleven years ago in Westchester County to support families struggling to raise children with autism and to fund scientific research to discover the causes of autism and develop new treatments. Over the past few weeks, ASF has created new programs specifically to support families and scientists during the Covid-19 crisis.
“This pandemic is unprecedented in our lifetime, and many individuals with ASDs and their families are struggling with challenges that they never could have imagined just a few weeks ago. It’s heartbreaking,” said Alison Singer, Co-Founder and President of ASF. “In lieu of our usual spring and summer activities, ASF has completely shifted gears so that we can put all our resources toward serving as a resource and advocate for families. There’s a lot of fear out there, much of it justified, and we need our families to know that they won’t be forgotten.”
ASF recently launched a resource portal for families all over the country. The pages have been shared thousands of times by universities and service centers.
“It’s also critical to our families that research about the causes of autism and to develop new treatments continues,” said ASF Chief Science Officer Dr. Alycia Halladay. “We recently launched a new funding mechanism called ‘Pivot Grants’ to help scientists manage changes in research projects due to the Covid-10 emergency.”
The funding is meant to support new costs encountered due to adaptations or modifications of an original research plan as a result of the current shutdown across research institutions.
Stick to the Science
ASF’s story begins in 2009. Scarsdale resident Singer had spent the past several years as an autism activist, working with a number of organizations, but she chose to start her own group after witnessing what she regarded as a troubling trend: increasing tolerance for the view that vaccines cause autism.
“At ASF, we don’t waste time paying lip service to ideas that have no scientific basis – the issues we seek to address are too important,” said Singer. “By 2009, dozens of studies had been completed and none showed any relationship between autism and vaccines. It was time to move on.”
ASF believes that good research is the greatest gift autism families can receive, and to that end, its operations are centered around providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Since its inception, ASF has committed several million dollars to autism research programs.
Grantees range from postdoctoral fellows to undergraduate researchers. Current initiatives include testing for pre-symptomatic biomarkers for autism, analyzing genetic sequences to uncover heritable causes of autism and analyzing baby talk to better understand brain development in autism. ASF also runs the Autism Sisters Project, which explores gender discrepancies in autism diagnoses.
“Autism is incredibly complex, and the fact is we don’t know where the perfect solution for autism will come from. This means we need advancements in a wide variety of sciences,” said Halladay. “Each day, dedicated researchers are asking the right questions and moving closer to breakthroughs, and we are very proud to have a hand in this vital work.”
Family Focus
For ASF, 2020 was shaping up to be a year like any other – and then the coronavirus crisis began. Business as usual went out the window, and now the organization is focused on updating its resource portal on a daily basis to meet the diverse and growing needs of the autism community.
ASF has compiled an exhaustive list of resources for individuals with ASDs and their families, ranging from teaching tools and behavior management strategies to advice on navigating the healthcare system. Every situation is unique, requiring ASF to take a multi-pronged approach.
For example, many students with autism are facing severe disruptions to their education, with their highly specialized programs being converted to distance learning models with barely a moment’s notice. For students with an IEP, it can be very difficult to meet their educational and therapeutic needs (like Occupational Therapy or Physical Therapy) without a therapist present. Others are missing out on the direct, often one-on-one instruction that can only come from a special education teacher.
Behavior management is another significant obstacle – with their lives turned upside down, many children with autism are acting out, especially when they do not understand the reasons for these drastic changes. Others are simply very bored.
Then there is health, both physical and mental. Many autism families are worrying about their child’s comorbid conditions, like seizure disorder, or the dreadful possibility that their child could be hospitalized during this crisis. Others have been forced to halt their child’s regular visits with their doctor or therapist.
Looking Ahead
The coronavirus crisis is an all-hands-on-deck situation, but it is difficult not to think about brighter days ahead. ASF has three NY-based events planned for the fall that will serve to both bring the community together and generate fundraising dollars: Dancing Stars of Westchester, Wall Street Rides FAR and the ASF Day of Learning.
Hosted by the Fred Astaire Dance Studios Mamaroneck, Dancing Stars of Westchester will pit prominent community members against one another in a friendly competition to see who has the best moves. The gala dinner and dancing event is set for October 3 at the Hampshire Country Club in Mamaroneck, and all proceeds will support ASF.
Wall Street Rides FAR is a charity bike ride that brings together riders of all skill levels to raise money for ASF while fostering community and taking in scenic views throughout Westchester. While the event was founded by Wall Streeters, it is open to all. This year’s event is also set for October 3 at Saxon Woods Park in White Plains.
“When my wife and I started the ride, we searched high and low for the ideal beneficiary,” said Bryan Harkins, co-founder of the ride. “Alison’s passion was apparent from our very first meeting with her, and we could not be prouder to support ASF.”
Meanwhile, the Day of Learning – ASF’s flagship annual event – is a TED-style science conference that brings autism scientists together with families to share the latest research and best practices for therapy. Originally scheduled for March, the event has been moved to September 22, 2020 and will be employing a virtual model for the first time. Topics this year include personalized behavioral interventions for adolescents with autism, CBD trials for individuals with autism and developing new terms to represent the breadth of the autism spectrum. Speakers from the Yale Child Study Center, the University of Pennsylvania, UCLA and Rutgers University will be participating.
“We are so fortunate to have great relationships with our communities, both locally in Westchester and within the autism community,” said Singer. “Dancing Stars of Westchester and Wall Street Rides FAR are outstanding community events and we are so grateful to be involved. Meanwhile, our Day of Learning is one of our biggest, most important days of the year, and after what will be an incredibly difficult year for the autism community, we see our role of facilitating discussion of key issues as more important than ever.”
But while there is much to look forward to, ASF’s current focus remains on the day-to-day realities of its families.
“At the end of the day, everything we do is about creating better outcomes for those with ASDs,” said Singer. “Sometimes that looks like funding research, but today it’s providing direct support to the community. We are in their corner, and we always will be.”
