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App to help young people with autism learn about their bodies

03 Dec 2021

ACCESS-ABILITY is an innovation project that set out to develop materials to help young people with autism spectrum disorder access comprehensive sexuality education (CSE). Ms. Jovanka Brajovic Grigorijevic and Ms. Irena Spirkovska are part of the UNFPA North Macedonia team that is developing a platform for educators and families to teach visual lessons for young people living with disabilities, helping them better understand their bodies and their rights. 
 
“The initial concept was to adapt content that was available in North Macedonia,” said Ms. Brajovic Grigorijevic. “We looked at digital formats to customize the content based on the level of functionality of the young person with autism.”
 
The idea was the beginning of a journey that is still unfolding as the project engages educators and families to refine the learning tools. Months of careful research and planning were needed to tailor the content to levels of functionality they imagined. Before the pandemic, the team went to an innovation boot camp in 2019 and worked with experts to improve the idea.
 
“We are not strong on IT and we saw it as a risk for us to engage a local vendor to work on software solutions,” Ms. Spirkovska said. “Software development is especially complicated when none of us are experts in the field.”
 
At the boot camp a team from innovation at headquarters offered the North Macedonia office the digital solutions they were looking for, using a software package entitled YouthCONNECT. “All the functionalities envisaged could be provided through the digital health class option on YouthCONNECT that we discussed with developers,” she said. 
 
Before the pandemic, the team conducted focus groups with civil society representatives, parents, special educators and caregivers. Ms. Brajovic Grigorijevic said finding the right stakeholders was not easy because many cases of autism go undetected in North Macedonia. “Autism is detected only in the cases of lower functionality.”
 
Globally, it is estimated that 1 in 160 children has a form of autism. Ms. Spirkovska said individuals who are lower on the scale of functionality need access to better information to learn about their bodies. 
 
The platform they are developing has sections to help educators support young people as they learn about their body parts. “Young people with autism worry about their private body parts,” Ms. Brajovic Grigorijevic said. “They worry about public and private space. What actions can be done in public and what can be done in private?”
 
Ms. Spirkovska said families in the focus groups talked about anxiety when it comes to undressing or showing body parts. Through the discussions, they learned that some families didn't know how to support their child and were eager for information that related to their circumstances. 
 
Ms. Brajovic Grigorijevic said the goal of each lesson on the platform is to open a conversation and ultimately defuse anxiety. “The lessons help young people reduce their level of stress on sensitive subjects.”
 
The tool has chapters about private space and changes to adolescent bodies as they go through puberty. “When they don’t have reliable information to understand what's happening with them,” Ms. Spirkovska said, “it can add stress to period anxiety and it can lead to a sense of not being accepted by their peers.”
 
The team have encountered a wider tendency to overlook the sexuality and needs of people living with disability among health workers and policymakers.
 
“The sexual and reproductive health of persons living with disability is not the first thing that comes to mind when you speak about the needs of persons with special needs,” she said. “These are biological processes that happen to everyone, including people living with disabilities.” 
 
Ms. Brajovic Grigorijevic feels there is entrenched public resistance to comprehensive sexuality education in North Macedonia that has delayed the development of adequate resources. While the Ministry of Education is doing its best to produce education materials, the gap has left communities without guidance or tools to support adolescents with autism. “Parents and caregivers often do not have any resources or even a school curriculum,” she said. 
 
A central challenge was repeatedly making the case that people living with disabilities are sexually active. “They are not asexual,” she said. “There is a perception that they do not have that kind of emotion. They do think about sex.”
 
The project hopes to transform cultural dynamics and perceptions of people with autism. Through partners on the community level, the specially designed materials can be a teaching tool for the care of people living with disabilities and autism. She said the group of educators and families they consulted were enthusiastic about the potential. “The people who work with young people with autism see the value and benefit straight away.”
 
The lessons will cover different kinds of relationships, LGBTQI+ rights, gender identity and healthy, positive relationships. The black and white drawings help young people see the difference between healthy and unhealthy relationships and talks about how to recognize and identify abusive behavior or violence.

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A concept sketch for the North Macedonia innovation team’s 'Digital Storytellers' project. © UNFPA EECARO

Ms. Brajovic Grigorijevic said these complex subjects are what make the resource comprehensive. “To disregard these aspects and focus on the act of sex itself is far too narrow,” she insisted. “Some conservative groups are even against teaching young people about different gender identities.”
 
Ms. Spirkovska said resistance is part of the path to progress, but the feedback that mattered most was from the parents of autistic children. “Those families are very close to their children; they live with them on a daily basis.”
 
When it’s launched in 2022, ACCESS-ABILITY will be a learning platform for family members and caregivers to better respond to challenges. “They need to know how to react when their child is distressed,” said Ms. Spirkovska. “They need tools for what to say and what to do with autistic children.”
 
Ms. Brajovic Grigorijevic said the platform can have life-changing impacts for young people on the spectrum. “It will provide knowledge for them to cope with the changes and processes that are happening in their bodies,” she said. “It can help them reach their potential in every aspect of their lives.”
 
While the team is focused on the final parts of the development, they are already focused on wider uses. “It can be used beyond North Macedonia,” Ms. Spirkovska said. “It can be translated into different languages and used in other countries.”
 
The North Macedonia office has been approached by global colleagues who are interested in the resources being translated and made available for country-specific or even regional adaptations. 
 
Ms. Spirkovska said she is proud that their innovation will meet the unique needs of young people living with disabilities. “These issues are increasingly visible,” she said. “With the impacts of the pandemic, it's urgent for us to develop solutions for young people to access the right support, especially those living with disabilities.”
 
 
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