SPARK, the largest study of autism families in the U.S., announces findings on effects of COVID-19

NEW YORK, April 3, 2020 /PRNewswire/ -- When COVID-19 arrived in New York, Dr. Wendy Chung, principal investigator of the SPARK study and a physician in New York City, knew that this was a singular moment in time. She wanted to understand how the pandemic was affecting families with autism across the country — in real time — and then share what she found with the community. She sent SPARK study participants a quick but important survey. SPARK, the largest study of autism families in the United States, was designed to allow for this kind of rapid data collection and sharing of information.

"SPARK provides the infrastructure for the autism community to learn from each other and immediately share those lessons learned, even at times as challenging as this coronavirus crisis," says Chung. "We are learning at the community level, and scientists are partnering with us to understand the fundamental differences in the mind, brain, and behavior of individuals with autism. Even though we are apart in space, we are together in spirit."

Before SPARK, many families had never participated in autism research, and scientists struggled to find participants for their studies. SPARK fills this gap with over 230,000 participants currently enrolled, and counting. To date, SPARK has matched over 65,000 families with 60 outside studies on topics like services and treatment patterns, anxiety, and social skills. Importantly, SPARK also maintains, and is still recruiting for, the largest genetic data set of autism families to date. The purpose of this data set is to identify genes that are linked to autism. SPARK is currently analyzing DNA data from approximately 30,000 people who have autism and will share the findings sometime this year.

To learn how COVID-19 is affecting the autism community, on March 20, SPARK launched a massive online survey to almost 70,000 families, and within two weeks, received responses from over 8,000. The results show that many families are coming up with innovative and successful strategies to navigate therapies, education, and daily life, whereas others are struggling to handle the new challenges.

For example, over 2,200 families said that telehealth appointments for autism-related services were working well. Online school was also beneficial for some children, with parents citing that their child experienced less anxiety and social pressure. One parent reported that her child had problems at school, such as not having a good friend and not communicating well; however, at home, her child seemed happier and calmer. Families also noted that online classes allowed for a slower pace of learning. Many families shared that maintaining a schedule and structure to their child's day was crucial for avoiding meltdowns.

Online services and school were important for maintaining a routine, but families also responded with suggestions on how to stay busy, active, and engaged outside of the virtual clinic and classroom. Families stressed that mindfulness-related activities were helpful, with hundreds recommending breathing exercises, yoga, prayer, and meditation. Keeping in touch with family and friends through social media, texting, and video chatting also proved to be beneficial when in-person meetups were not possible due to social distancing.

Some families were able to manage therapies and school from home, while others found it challenging. Being at home has disrupted the vital link to the important network of professionals upon which families rely. Over 75 percent of families found that their child's ASD services or therapies were moderately to severely disrupted due to COVID-19, with families who have children under the age of 5 reporting the most disruptions. Families who live in the Northeast were the most affected by disruptions. Urban families reported a modest increase in severe impact or disruption versus rural families. Regarding services, one parent is coping by asking their therapist to provide specific instructions on what activities and skills to do at home during this time to help maintain a regular schedule.

Over 70 percent of families felt moderately to severely stressed or overwhelmed by the disruption in their child's services or therapies. One parent stated that they were struggling to perform the tasks for their son that a team of people normally do for him. They stated that it's overwhelming and so far, not very effective.

For school-aged children, over 98 percent of their schools were closed, with over 80 percent of families citing disruptions in crucial services that their child received at school. Parents are worried about their child losing hard-won progress and skills that had been gained during the school year. To help children with online learning, one parent suggested that teachers send a pre-recorded activity or lesson featuring their teacher that could be viewed by the child.

SPARK will continue to survey the community over time to learn more about specific topics and to get information out to the community as the situation changes. SPARK will also be sharing tips and strategies for success throughout the month of April on its social media channels using the hashtag, #SPARKstrong. Families can also share their own tips with the community by posting them on Facebook, Twitter, or Instagram using the same hashtag.

SPARK will share findings from a similar survey that was sent on March 30 to adults who have autism.

Anyone interested in learning more about the findings from the survey that was sent to families can download the attached infographic.

To learn more about SPARK or to join online, please visit www.SPARKforAutism.org. Enrollment is open to anyone living in the U.S. with a professional diagnosis of autism.

About SPARK
SPARK is a national online autism research initiative that connects people who have a professional diagnosis of autism and their biological family members with research opportunities to advance our understanding of autism. SPARK's goal is to not only better understand autism, but also accelerate the development of new treatments and supports.

Registration for SPARK can be done entirely online in the convenience of one's home and at no cost. DNA is collected with saliva kits that are shipped directly to participants. Once the SPARK participant's family has returned their saliva samples, participants receive a $50 Amazon.com gift card code. If SPARK researchers identify a gene change that is linked to autism, this information is returned to families at no cost. SPARK also shares individualized reports with families based on their responses to certain surveys.

For researchers, SPARK provides a large, well-characterized cohort of genetic, medical and behavioral data. Using the information that SPARK participants share, the study also helps researchers to find participants who are appropriate for their studies. These studies may involve completing an online questionnaire about autism services or visiting a research center for a study on autism and anxiety.

SPARK has partnered with 31 clinical sites across the country, as well as autism organizations, service providers, and key influencers to help educate the public about SPARK and to recruit participants. Through these strategic partnerships, SPARK hopes to reach and engage a diverse and large number of individuals and families that are affected by autism. To find a SPARK clinical site or to enroll in the study, please visit www.SPARKforAutism.org.

SPARK is entirely funded by the Simons Foundation Autism Research Initiative, or SFARI, a scientific initiative within the Simons Foundation's suite of programs.

About Simons Foundation Autism Research Initiative

Launched in 2003, SFARI is a scientific initiative within the Simons Foundation's suite of programs. SFARI's mission is to improve the understanding, diagnosis, and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance. In 2007, SFARI issued its first request for applications, its goal being to attract top researchers to the field of autism research. Today, with a budget of approximately $78 million per year, SFARI supports more than 250 investigators. Since its launch, the initiative has provided or committed more than $480 million in external research support to more than 480 investigators in the United States and abroad.

SOURCE Simons Foundation

Related Links

www.simonsfoundation.org

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