After a concerned mother reached out to researchers at UNC about the impact of the war in Ukraine on children with autism, a team at the Frank Porter Graham Child Development Institute created a toolkit of evidence-based resources to help children cope.
Kara Hume is an associate professor in the School of Education and director of the National Clearinghouse on Autism Evidence and Practice. Hume is also the faculty fellow at the UNC Frank Porter Graham Child Development Institute who came up with the idea for the resource packs, which she dubbed “timely toolkits.”
“We need to be extra thoughtful for this population that might struggle with the sensory experiences in a different way, the social experiences in a different way, the routine in a different way, that some of the blanket resources that are developed may not be as helpful as we would hope,” she said.
For the most recent toolkit, the team received a request from Danna Summers, a psychologist from Kazakhstan, about the experiences that families she knew were having regarding the war in Ukraine.
Summers, who has a five-year-old son with autism, had friends and colleagues in Ukraine when the war initially started.
She saw a post online saying that children with autism were having issues trying to cope as they were going into shelters in Ukraine and contacted Hume’s team to see if they could provide potential resources.
“We also have these evidence-based practice modules,” Ann Sam, an advanced research scientist at the Child Development Institute, said. “And so we’ve kind of been known for that dissemination of information.”
Sam said the research team has a more extensive program known as the Autism Focused Intervention Resources and Modules that distributes information about evidence-based practices for students with autism.
Hume said it’s difficult to know how the resources are getting to Ukraine.
“So we really worked around the initial development and then have passed the materials on to colleagues in Russia, in Bulgaria, in Ukraine, who are then sharing,” Hume said. “We've heard on social media and with families that they know, so it's kind of like an organic spread through avenues that, local to those regions, families and professionals have access to.”
Summers shared with the team that a psychologist from Ukraine who had to relocate to Germany said she was grateful that individuals have a starting point for materials and resources to help children and families feel more grounded in new routines during this time of transition.
Hume said the biggest challenge she faced when creating the toolkit was not having the first-hand experience of living with autism or being in a war-torn country.
“And so really, that's where we relied on all of the professionals and families from these regions that could share with us what were the biggest fears, what were their experiences, what they could bring with them, what materials they had access to, so that we created materials that were really contextually relevant and actually possible for families to implement,” Hume said.
Hume said she thought these toolkits are helping people to be more thoughtful when significant events are impacting people worldwide, like COVID-19 or displacement due to war.
She was the lead author on the timely toolkit the group created in March 2020, when the COVID-19 pandemic began.
Jessica Steinbrenner is an assistant professor in the Department of Allied Health Sciences and a faculty fellow at the Child Development Institute.
Steinbrenner said the team was mindful that people would most likely access the resources on their phones. They also focus on offering comfort within the resources.
“While this was a specific request from Ukraine and Russia, we made it pretty general, knowing that there is war and displacement in a lot of other areas of the world at all times,” Steinbrenner said.
The UNC community can help by continuing to communicate with the research group about the needs of the community and how the team can be responsive to those needs, Hume said.
For the future, the team has talked about creating resources to help autistic individuals understand school violence and school shootings.
“We’re definitely passionate about making sure that our work makes it out into the real world,” Steinbrenner said.
CORRECTION: An earlier version of this article introduced Danna Summers as a "psychologist in Russia." She is a psychologist from Kazakhstan who currently resides in the the state of Washington. The Daily Tar Heel apologizes for this error.
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