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COLUMBIA, Mo. – According to the latest data from the Centers for Disease Control and Prevention, one in 45 children is diagnosed with autism. As these children age, experiences such as leaving school, finding jobs and living alone can be stressful for adolescents with autism as well as their caregivers. Researchers from the University of Missouri have conducted the first study analyzing the perspectives of adolescents with autism to identify challenges as they “age out” of services. The researchers say these findings highlight the need for social workers and providers to assist children with autism as they transition to adulthood.
“The challenges of living independently, gaining employment, attaining postsecondary education and building social relationships are greater for adolescents and young adults with autism,” said Nancy Cheak-Zamora, assistant professor of health sciences in the MU School of Health Professions. “It is vital that professionals are prepared to assist with the transition, and that they have insight into adolescent and caregiver experiences during the difficult time of transitioning to adulthood.”
Cheak-Zamora, Jennifer First, a doctoral candidate in the MU School of Social Work, and Michelle Teti, associate professor of health sciences, analyzed the reported experiences of adolescents with autism and their caregivers. They identified main themes of stress impacting families: challenges in accessing services, difficulties with adapting to transition changes, and managing multiple responsibilities and higher education challenges.
One of the study participants, a caregiver named Mary, related how the autism center in her community offered no support once children with autism leave. She said that she wishes that services would increase during this period; once children reach a certain age, it is difficult to find help. Caregivers and adolescents also reported a variety of strategies to cope with the stress of transitioning to adulthood with autism. Main themes included: accessing community support; receiving support from friends, family and teachers; and creating opportunities for self-determination, such as making independent choices and setting goals.
“For families who are experiencing a lack of available services for their adolescent with ASD, social workers can collaborate in forming family groups that advocate for more services for individuals living with autism into adulthood,” First said. “Social workers should assist families with the coordination of essential services such as medical treatment, mental health supports, independent living, respite care, college support and enhanced vocational support.”
“A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder,” was published in the Journal of Family Social Work. Funding for the project was obtained from the Health Resources and Services Administration, Maternal and Child Health Bureau (H6MMC11059).
Cheak-Zamora also works with the MU Thompson Center for Autism and Neurodevelopmental Disorders, a national leader in confronting the challenges of autism and other developmental conditions through its collaborative research, training and service programs.