Adults with autism in Utah are facing an invisible crisis due to a shortage of services in the state, according to a recent report. While public schools provide necessary support for children and teens with autism, there is a lack of adequate services for adults who have aged out of the system. The report, titled the Autism After 21 Utah Project, aims to highlight the everyday obstacles faced by adults with autism and propose solutions.
Sumiko Martinez, state director of autism and one of the authors of the report, emphasized the additional barriers neurodivergent individuals and people with autism face in their daily lives. The goal of the project is to collect data from autistic individuals, their family members, and community leaders to identify service gaps and collaborate with local and state leaders to address them. Currently, services for adults with autism are mostly concentrated along the Wasatch Front, leaving many individuals in rural parts of the state without access to much-needed support.
Some families interviewed for the report shared their experience of having to separate their households, with one parent and a child living along the Wasatch Front during the week to access services. This puts a significant financial and emotional burden on families who want to remain in their communities but cannot access the necessary support services.
Additionally, the report highlights the challenge of a constant churn of providers in some areas, making it difficult for adults with autism to develop long-lasting relationships with healthcare and mental health professionals. One recommendation put forth by Martinez is for cities and towns to collaborate with professional associations and incentivize providers to stay in rural areas.
The report also sheds light on the most common needs expressed by survey respondents, including housing, a sense of belonging, and friendship. Contrary to the common stigma that autistic individuals are less social, the study emphasizes that people with autism, both children and adults, have social needs and desire friendships and a sense of community. The broader community must consider how to meet these needs in different ways.
To address housing needs, the report suggests the development of neuroinclusive living spaces designed with sensory needs in mind. Inclusive housing units could include easily accessible tablets in common areas where residents can request assistance with various services and amenities. Additionally, sensory-friendly amenities could be located near one another, such as fitness classes and healthcare facilities, while reducing noise pollution and fluorescent lighting to create more accommodating environments.
The report also calls attention to the fact that there are approximately 32,000 individuals with intellectual and developmental disabilities in Utah who live with caregivers aged 60 or older. The lack of sufficient services puts these individuals at risk if their caregivers become unable to provide care. The crisis around services for adults with autism continues to grow, yet it remains largely invisible to the public eye.
Advocates emphasize that raising awareness and understanding about autism is crucial. Many people assume that autism is only visible in children, leaving adults who do not fit the stereotypical image without access to essential services in areas such as education, employment, and healthcare. To improve this situation, government agencies, particularly police departments, could hire individuals trained to assist people with autism.
While finding solutions may not be straightforward, consultants involved in the report stress the importance of policymakers and business leaders being open to input from constituents and employees with autism. The needs of the autistic community are diverse, so the best approach involves asking questions and deeply listening to different perspectives.
Overall, the report highlights the shortage of services for adults with autism in Utah, particularly in rural areas, and offers recommendations for improving access to support. It emphasizes the social and housing needs of autistic individuals and calls for greater awareness, understanding, and inclusivity. The crisis remains largely invisible, and it is crucial to address the gaps to ensure that adults with autism can fully participate in their communities.
