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KU project to aid young women with autism in mapping health resources in community

Thu, 04/07/2022

LAWRENCE — Transitioning to life after high school is a monumental time in young people’s lives, as they move on to college, enter the workforce, leave home and begin adult life. But for young people with autism, that time can be especially fraught, as supports and programs in place to support them in school often end. A University of Kansas researcher has won a grant to help develop a program specifically designed to help autistic young women build their social networks, enhance self-determination and digitally map community resources to improve their physical health and well-being.

Google map of Lawrence area.Jenn Bumble, incoming assistant research professor in the KU Center on Developmental Disabilities at the KU Life Span Institute, earned a one-year, $42,000 grant from the Autism Intervention Research Network on Physical Health, known as AIR-P. The AIR-P Scholars Program focuses on launching the next generation of researchers seeking to promote the health and well-being of autistic individuals across the lifespan. KUCDD is a collaborating research entity of AIR-P. The grant will fund initial research on Mapping My Health, a novel intervention that combines community asset mapping and self-determination instruction to help autistic young women.

Autistic adolescents often have supports throughout their school careers as they plan for continuing education, employment and community living, but this planning rarely addresses health care. This means many youths are leaving the K-12 school system with limited knowledge of community health assets or effective strategies to achieve their health and wellness goals.

“We too often leave out the health aspect of transition. We focus on college or careers, which are important, but health and well-being are vital as well,” Bumble said. “Autistic young women 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 for co-occurring health conditions.”

Mapping My Health will address that shortfall with a digital and community-based approach. Bumble 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 into Google My Maps to chart what is available in their community. Mapping My Health brings MAPS together with the Self-Determined Learning Model of Instruction, a strengths-based approach developed at KUCDD, that enables young people with disabilities to set and go after goals and teaches the skills necessary to achieve them. Participants will use their maps to set goals for health areas needing additional support, create action plans to achieve their goals and self-evaluate their progress as they learn more about themselves and community assets.

This summer, the research team – including faculty members Sheida Raley and Karrie Shogren as well as doctoral 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, they will work with family and community partners to learn more about health, well-being, health outcomes and services available in their community.

“Mapping My Health is all about helping young people map out what’s available in their community and learning who can support them in meeting their goals,” Bumble said. “The program is also inclusive, leveraging peers without autism to provide peer-mediated supports 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 board will provide guidance and enhance the feasibility, relevance and accessibility of Mapping My Health. Participants will share their findings about available services, coverage gaps and more with the board and community members, health care providers, family members, policymakers and others.

At the conclusion of the program, Bumble said researchers will share their findings with the goal of securing more funding to scale the program up to be available across the state and region and to make the Mapping My Health curriculum more widely available to schools and communities.

As young people with autism often struggle with social connections, a primary goal of Mapping My Health is to improve connections for the young women with family, friends, co-workers, service providers and others to promote positive health outcomes.

“When most of us make health decisions, it’s not on our own or just with our doctor, it’s often with a circle of support,” Bumble said. “Participants will be empowered as experts on their own health experiences as they move through a process of reflection, investigation, planning and action to improve their own health and the health of their 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. That will fit hand-in-hand with programs aimed at improving the interconnected areas of education, careers and community living.

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



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