Dr. Wendy Chung, Principal Investigator of SPARK

Date Published: April 3, 2020

I want to thank the families who took the time to share how COVID-19 has affected their daily lives. It’s clear that there have been disruptions; however, we were happy to see that many of you shared strategies that have been working for you and your family. If you follow us on social media, you can find some of these strategies. We’re sharing tips daily throughout the month of April using the hashtag, #SPARKstrong. Even though we are geographically distant, we are together in spirit. And, we’re stronger together.

When you joined SPARK, we promised to work with you to build the largest community of people dedicated to advancing autism research. You and the thousands of families in SPARK continue to provide valuable information on a scale that was not previously possible. Over 8,000 SPARK participants responded to the short Coronavirus survey that launched on March 20.

Through the survey, we hoped to hear how families have been affected by COVID-19. We wanted to know about the disruption of services and school closures and how you were faring with mental, emotional, and physical health.

The survey respondents were predominantly female parents, 93 percent, or guardians of school-age children, most of whom were boys, 80 percent. The average age of children was 12 years.

We learned that most families were severely affected by COVID-19 and that parents of children under the age of 5 reported more severe disruptions in their child’s ASD-related services compared to school-age children or dependent adults.

Fifty five percent of the respondents were from large metro areas, with urban families reporting a modest increase in severe impact or disruption versus rural families. Although respondents were almost equally divided among the Northeast, South, Midwest, and Western regions of the United States, families living in the Northeast reported experiencing the most disruptions related to services and daily life.

Positive Results

Families reported enjoying extra family time due to social distancing and focusing on hobbies, limiting social media and news, and exploring mindfulness activities like breathing exercises, yoga, meditation, and prayer. Some families have embraced the chaos and are focusing on what can be controlled one day at a time. Some families reported that online school worked better for their child. One parent said that their child responded well to a slower pace of learning and seemed calmer and less anxious.

Challenges

Some families reported that they are struggling with the upheaval. Almost all schools are closed, which means that, in some cases, they no longer have access to services their child received at school. Some families reported that online schooling was difficult for their children. Parents reported issues with juggling work and a lack of childcare options, as well as lack of training in specialized services that their children received elsewhere. Many parents reported that their child has experienced anxiety, meltdowns, or aggressive behaviors as a result of disruptions in their routine.

The bottom line is that families are feeling that their lives are very disrupted. Together, we will pull through, and I challenge you all to share your tips and tricks using #SPARKstrong so that we can all learn from each other.

See more findings from the survey in PDF format or PNG format. A similar survey for adults who have autism was launched on March 30. A report of those findings will be forthcoming.

Read another statement on COVID-19 here.