KU project to help young women with autism map health resources in the community

LAWRENCE — The transition to life after high school is a monumental stage in the lives of young people, as they enter college, enter the workforce, leave home and begin adult life. But for young people with autism, this time can be particularly difficult, as the supports and programs in place to support them at school often come to an end. A University of Kansas researcher has won a grant to help develop a program specifically designed to help young women with autism build their social networks, improve their self-determination, and digitally map community resources to improve their physical health and well-being.

Jenn Bumble, incoming assistant research professor at the KU Center on Developmental Disabilities at the KU Life Span Institute, was awarded a one-year, $42,000 grant from the Physical Health Autism Intervention Research Network, known as the AIR-P. The AIR-P Fellowship Program aims to launch the next generation of researchers seeking to promote the health and well-being of people with autism across the lifespan. KUCDD is a collaborating research entity of AIR-P. The grant will fund initial research on Mapping My Health, a new intervention that combines community asset mapping and teaching self-determination to help young women with autism.

Teens with autism often receive support throughout their school careers as they plan for further education, employment, and community life, but this planning rarely involves health care. This means that many young people leave the K-12 school system with limited knowledge of community health assets or effective strategies to achieve their health and wellness goals.

“Too often we ignore the health aspect of the transition. We focus on college or careers, which are important, but health and wellness are also vital,” Bumble said. “Young women with autism are an understudied and underserved group in the autistic community. They often go undiagnosed or receive delayed diagnoses, which can impact their social communication support needs and put them at risk. to concurrent health problems.

Mapping My Health will fill this gap with a digital and community-based approach. Bumble has created a digital intervention called Mapping Assets for Postschool Success. Known as MAPS, the program works with young people to document community assets such as service providers, community organizations, employers and other supports in Google My Maps to map what is available in their community. . Mapping My Health combines MAPS with the Self-Determined Learning Model, a strengths-based approach developed at KUCDD, which empowers young people with disabilities to set and achieve goals and teaches the skills needed to achieve them. Participants will use their maps to set goals for health areas that need additional support, create action plans to reach their goals, and self-assess their progress as they learn more about themselves and the community assets.

This summer, the research team – including faculty members Sheida Raley and Karrie Shogren as well as PhD student Jessie Kiblen – will work alongside 24 young women with and without autism and take pre- and post-tests to measure changes in their social networks, self-determination, and physical health and well-being. Half of the total sample will receive the Mapping My Health intervention. Those who do will not only map their digital assets, but work with family and community partners to learn more about health, wellbeing, health outcomes and available services in their community.

“Mapping My Health is about helping young people map out what’s available in their community and learning who can help them achieve their goals,” Bumble said. “The program is also inclusive, relying on non-autistic peers to provide peer support as they all move through the mapping process together.”

The research team will work with a community advisory board, led by an autistic co-researcher. The council will provide advice and improve the feasibility, relevance and accessibility of Mapping My Health. Participants will share their findings on available services, coverage gaps and more with the board and community members, healthcare providers, family members, policy makers and others.

Upon completion of the program, Bumble said the researchers will share their findings with the goal of securing more funding to expand the program to be available statewide and regionwide and to make the Mapping My Health program more widely available to schools and communities.

As young people with autism often struggle to make social connections, one of the main goals of Mapping My Health is to improve young women’s connections with family, friends, co-workers, service providers and others to promote positive health outcomes.

“When most of us make health decisions, it’s not by ourselves or just with our doctor, it’s often with a circle of support,” Bumble said. “Participants will be empowered as experts in their own health experiences as they move forward in a process of reflection, inquiry, planning and action to improve their own health and that of their loved ones. communities.”

The project will also engage families, preparing them to support the asset mapping process and apply it to other areas of community life after the intervention. This will go hand in hand with programs aimed at improving the interconnected areas of education, careers and community life.

Picture: A Google My Maps screenshot of the University of Kansas campus and surrounding Lawrence. Credit: Google.com/maps.

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