A team at the University of North Carolina at Chapel Hill has answered a call for help from Ukraine, developing and publishing a set of resources to help families and others who care for autistic children and youth cope with the violence and uncertainty of war.
The team, led by Kara Hume, Ph.D., associate professor in the UNC School of Education, developed a compilation of easy-to-use resources — accessible online to families and professionals — to provide support for children and youth with autism during times of uncertainty, conflict, and upheaval.
“We hope the resources make it a tiny bit easier for a family or professional to pull up some quick, ready-made tools that can provide some bit of a routine that could be calming or soothing to someone in a time of stress,” said Hume, a researcher and practitioner who has worked for almost 30 years with children and young adults on the autism spectrum.
“We know this is just a small way to offer support at a great distance, but we wanted to be as responsive as possible to their requests so we developed what we could as quickly as we could,” said Hume, who also serves as director of the National Clearinghouse on Autism Evidence and Practice and as a faculty fellow at UNC’s Frank Porter Graham Child Development Institute (FPG), which hosts the materials.
The resources have been translated into Ukrainian and Russian languages, distributed in those and surrounding countries by local professionals, families, and self-advocates, and are downloadable in PDF format.
The materials represent the second major “Timely Toolkit” developed by the team, which included researchers, staff, and students from FPG, UNC’s Department of Allied Health Sciences, and the UNC School of Education. At the outset of the COVID-19 pandemic, the team produced a widely used Timely Toolkit to support autistic individuals and families, which has been downloaded almost 300,000 times and translated into 10 languages.
Designed for use in any conflict area
While the resources were developed for immediate use by families and caregivers affected by the war in Ukraine, they are designed to be of service throughout the world. The team developed the resources and materials so that they may be useful to individuals anywhere experiencing war and displacement.
Jessica Steinbrenner, Ph.D., CCC-SLP, associate professor in the UNC Department of Allied Health Sciences, said that people in Ukraine — and any place where there is war and displacement — are living in uncertainty and fear, with their day-to-day life markedly changed and their routines different and potentially unpredictable.
“Many autistic children and adults struggle with change and benefit from routine,” Steinbrenner said. “The resources we developed are an effort to provide some supports, guided by evidence-based practices, to address the fact that change is inevitable, and routine may not be possible in the same ways it once was.”
Answering a call for help
The project was launched after a psychologist with close ties to Ukraine along with an autistic self-advocate who is also a parent of an autistic child in that country, reached out to Ann Sam, Ph.D., an advanced research scientist at FPG, asking for help creating resources for families and professionals dealing with the effects of war and displacement, which have resulted in challenges for autistic children.
“After the resources were developed and before posting, they were reviewed by the team in Ukraine,” said Sam. “We want to make sure the needs of families and autistic children are centered, and the resources can hopefully be helpful to those impacted.”
The toolkit includes three categories of resources: social narratives, visual supports, and coping strategies. Social narratives explain in simple language what is happening or what will happen. The social narratives use words and pictures to support comprehension and reduce the child’s sense of being overwhelmed. By helping to clarify what is coming, caregivers can increase predictability and offer a sense of control for children with autism.
The visual supports provide templates for daily routines and “choice boards,” and offer step-by-step instructions for scenarios such as what to do if hurt and several daily living skills. Visual supports can promote understanding and provide structure, even in the midst of a chaotic and uncertain time.
The third resource offers coping strategies since trauma can impact mental and physical health and contribute to challenges with communication and self-regulation. Again, using words and images, the offerings provide calming routines, yoga poses, and mindfulness techniques, among other ways that children and families can deal with the unimaginable stress they are facing.