Building Neuro-Inclusive Community, Strengthening Mental Health: The Autism After 21 Utah Project

Authors

Sumiko T. Martinez, Madison House Autism FoundationFollow
Anna Smyth, Thrive UtahFollow
Ann C. Carrick, Madison House Autism FoundationFollow

Abstract

Over two decades of research shows strong positive relationships are a consistently powerful indicator of wellbeing and resilience. However, the U.S. Surgeon General notes that loneliness and isolation is an epidemic in the U.S., and that it is exacerbated for individuals with physical and mental disabilities as well as those with isolating economic or environmental situations. A recent review shows that many autistic adults in particular face challenges in finding the connections they want and need. They also often have compounding mental health conditions, such as depression and mental illness, lower incomes, isolating home environments due to a lack of resources, and significantly higher incidence of suicide deaths compared to non-autistic adults. However, there is still very little research on autistic adults, especially research that focuses on their wellbeing and that brings in their first-hand perspective.

The current Autism After 21 Utah (AA21 Utah) study addresses these gaps and reveals some positive news about Utah’s readiness to build more neuro-inclusive communities to facilitate friendship and belonging, as well as some challenges that autistic adults are currently struggling with in social relationships and finding resources. The researchers surveyed 133 autistic adults, family members, and community leaders across Utah regarding needs and barriers to greater community inclusion. Twenty-four participants also volunteered to be interviewed for more in-depth perspectives; eight of the interviewees and half of the survey respondents were self-advocates. Friendship and belonging were ranked as the second-greatest unmet need for community inclusion among autistic adults and their families. Forty-three percent of participants indicated that friendship and belonging were lacking from their lives. The AA21 Utah study advocates for a community-based approach to inclusion and suggests strategies for improving autistic adults’ access to friendship and belonging. Further research is needed to determine the best methods for ensuring social belonging and friendship for autistic adults and individuals with I/DD. The AA21 Utah study researchers plan to address these methods in upcoming phases of the project.

Plain Language Summary

Research shows that strong social bonds are important for health and happiness. However, a lot of people in the U.S. are lonely. It is worse for people with disabilities. Research shows that many autistic adults do not have the social bonds they want and need. They also often face struggles with mental health, being stuck at home, and low support. There is not enough research on autistic adults and their well-being. There is also not enough autism research that includes the voices of autistic adults.

The Autism After 21 Utah study is research focused on autistic adult wellbeing. The research looks at the needs and wants of autistic adults in their local area. Topics include friendship and social belonging, housing, local inclusion, and more. One hundred thirty-three autistic adults, family members, and local leaders in Utah were involved. They filled out a survey. Twenty-four people also volunteered to be interviewed; eight of the interviewees and half of the survey-takers were autistic adults. Friendship and belonging were ranked as the second-greatest need among autistic adults. Forty-three percent said that friendship and belonging were lacking in their lives. This research shows a greater need for inclusion. This report shows some next steps for supporting autistic adults’ access to friendship and belonging. Further research is needed to find the best methods for supporting inclusion for autistic adults. This study’s team plans to look at ideas in the next steps of the project.

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Recommended Citation

Martinez, Sumiko T.; Smyth, Anna; and Carrick, Ann C. (2024) "Building Neuro-Inclusive Community, Strengthening Mental Health: The Autism After 21 Utah Project," Developmental Disabilities Network Journal: Vol. 4: Iss. 1, Article 5.
DOI: 10.59620/2694-1104.1098
Available at: https://digitalcommons.usu.edu/ddnj/vol4/iss1/5