The world has been living through a global emergency since the coronavirus pandemic took hold early last year, and autism families have been hit particularly hard. People with autism thrive on routine and predictability, which are precisely what was lost amid COVID-19. While I know autism families to be among the most resilient people on the planet, this past year has tested us in ways we never imagined.
But periods of crisis often lead to our most profound periods of growth. At the Autism Science Foundation, we have stepped up to support autism families and researchers in new ways during the pandemic, and in the process gleaned lessons we are already implementing to strengthen connection, advance research and embrace ingenuity.
Here are just a few:
Science is essential. At ASF, we like to point out that science is our middle name, and there’s a reason for that: We know the power it has to change lives. Science is helping us find a way out of the pandemic and it’s also helping us continue to learn more about the root causes of autism—and make discoveries that can make a real difference in the lives of people with autism.
Autism researchers deserve credit for the way they have stepped up in the past year, and their passion for their work has impressively shined through during this period of crisis. Rather than throw up their hands in despair, these dedicated scientists showed creativity and resilience as they adapted existing research projects to align with new safety standards. They also took initiative to identify and study the most urgent issues facing autism families during the pandemic, including the validity of new online autism assessments and the mental health consequences of the pandemic on people with autism, with the goal of easing their struggles. I am proud of the way ASF has supported these efforts through our ongoing COVID-19 research grants.
Yet despite some notable silver linings, the reality is that the pandemic was and remains a challenging period for autism research. Like all of us, autism researchers were under incredible stress this past year. Early career researchers are in a particularly vulnerable position right now, as their long-term job security and career development became more at-risk. In a recently published study on the impact of the pandemic on early career autism researchers—overseen in part by ASF Chief Science Officer Dr. Alycia Halladay—all but one participant in an online survey said their research was negatively impacted by the pandemic; 85% also said the pandemic resulted in a loss of productivity. The truth is, we don’t yet know what the overall long-term impact of the pandemic might be on autism research, but we at ASF remain committed to partnering with these dedicated scientists so they are able to continue and expand their important work.
Autism families are tough—but we’re not invincible. The strength of the autism community is something I have known for years, but during the pandemic it’s been proven to me in ways I never before imagined. I am constantly amazed to see how determined parents step up time and again to fiercely advocate for their children. As we begin to find our way out of this coronavirus crisis, I am proud of the way autism families have reached out for help and adapted under scary circumstances — and it’s an honor for ASF to be a resource for them. As a mother of a child with profound autism, I empathize with their struggles because I also live them.
I am also a realist and am keenly aware of the intense stress autism families have been under for more than a year. As we all worried about staying safe amid a deadly virus, basic safety protocols, like mask-wearing and social distancing, were all-but-impossible for many people with an ASD to navigate. Going on lockdown caused an abrupt change in routine, which was devastating for so many autistic people who need a predictable routine to stay on track. Many people with autism have also struggled with the limitations of telehealth, and it was heartbreaking to hear stories of children who began to regress without in-person treatments.
Yet on the flip side, the pandemic also shined a light on some issues that have long needed addressing. The pandemic has alleviated but also exacerbated issues relating to access to services in families with ASD. While some assessments can be done virtually, others absolutely require in-person assessments and making sure those with specific needs receive the right services has been challenging. It has also highlighted some of the issues surrounding access for those with diverse racial and ethnic backgrounds. While some virtual assessments have addressed needs in rural communities, the lack of access to internet and mobile devices in some communities prohibits use of these online resources. ASF has provided COVID Research Grants to help both understand and address these disparities.
The power of technology to connect and heal. Although technology can never fully replace the significance of a face-to-face interaction, we quickly learned last year that it can play an important role in easing isolation when in-person meetups are impossible.
Last September, ASF’s annual Day of Learning became a virtual event for the first time and beautifully illustrated how technology could lead to new ways to foster connection. The virtual format allowed more than 900 people from all over the world to take part in the event, a new record. On April 22, 2021, ASF will again host a virtual Day of Learning and—even though we greatly miss seeing everyone in person—we are excited that this new format enables us to include even more people in our discussions of the most important issues facing the autism community. Some of the scheduled presentations include “The Impact of COVID-19 on Autism Families” from Dr. Pam Feliciano of Simons Foundation Autism Research Initiative and “Rethinking ASD Assessment in the Pandemic and Beyond” from Dr. Lonnie Zwaigenbaum of the University of Alberta, Canada.
The virtual Days of Learning are just one of the ways we have been able to pivot and help families and scientists in the past year. In an effort to ease the isolation felt by so many, ASF partnered with Autism Navigator to create a “virtual community” for families to connect with one another, as well as with clinicians and therapists to support their children’s learning and development. We also hosted webinars for families to address challenges including distance learning, telehealth and disruptive behavior, and collaborated with Els for Autism to launch a program to support the pandemic-related needs of siblings of people with autism. Additionally, we provided a grant to PEERbots, a nonprofit organization that develops social robot puppet software to greatly ease the provision of telehealth for children, particularly those with an ASD.
As we settle into spring and more people around the world get vaccinated, we are hopeful that pandemic-related stresses will ease and normalcy will begin to return. But we all know the pandemic has in some ways changed us forever. We are determined to use this crisis as a learning opportunity that will help us forge a new path forward, and we aim to use these pandemic lessons to support autism families and researchers in even more enlightened ways in the months and years to come.